«x: at! .4 ’ r
. 1.... I. V:

~¥35

1. ,i .Jﬁgh‘xﬂhvs.‘ .

.1: r

 

5;? Ln.
5., I, ‘

gaﬁmgiﬁnéﬂitai(#34323;an ﬁg 3% ‘ ., .... .. a . . 41?

2:1 . . ¢ . .: .. ‘

 

.2006

FROM CORPOREAL BANTUSTANS TO ABAKHUBAZEKILE:

 

LIBRARY
MIChIg, .1 State
University

 

 

 

This is to certify that the
dissertation entitled

DISABILITY AND IDENTITY IN SOUTH AFRICA FROM A

Doctoral

HUMAN RIGHTS PERSPECTIVE

presented by

MARTHA MARY LACLAVE

has been accepted towards fulﬁllment
of the requirements for the

degree in Medical AnthropologL

 

 

(L‘dvi Ox» cr/I

M@ Profe£sor’s SigHafure
5*- 10-— 05'

Date

MSU is an Afﬁrmative Action/Equal Opportunity Institution

- ~v——

PLACE IN RETURN BOX to remove this checkout from your record.
TO AVOID FINES return on or before date due.
MAY BE RECALLED with earlier due date if requested.

 

DATE DUE

DATE DUE

DATE DUE

 

DU!) 5031 05%?

 

0W 9 323.012

 

 

 

 

 

 

 

 

 

 

 

 

 

 

2/05 a/c'lﬁcmmommts

FROM CORPOREAL BANTUSTANS To ABAKHUBAZEKILE:
DISABILITY AND IDENTITY IN SOUTH AFRICA FROM
A HUMAN RIGHTS PERSPECTIVE
By

Martha Mary Laclave

A DISSERTATION
Submitted to
Michigan State University
in partial fulﬁllment of the requirements
for the degree of
DOCTOR OF PHILOSOPHY IN MEDICAL ANTHROPOLOGY
Department of Anthropology

2005

ABSTRACT
FROM CORPOREAL BANTUSTAN S TO ABAKHUBAZEKILE:
DISABILITY AND IDENTITY IN SOUTH AFRICA FROM
A HUMAN RIGHTS PERSPECTIVE
By
Martha Mary Laclave
This dissertation uses a human rights perspective to investigate the multiple
realities of disabled South Aﬁ‘icans active in the disability rights movement in the context
of rapid social change. Speciﬁcally, this dissertation investigates: (1) How disability is
deﬁned and organized in the context of democratization and human rights in South
Africa; and (2) The multiple ways disabled South Africans identify with their disability
toward an understanding of difference or political identity. The research on which it is
based departs from the more characteristic approaches to the study of disability in that it
includes people with multiple disability types (i.e., blindness, deafness, mobility
disabilities, mental disabilities, and other disabilities), and people with various ages of
disability onset. Although there are studies from the social sciences on disability, the
approaches used have not been able to critically pose how the disabled have become
marginalized in relation to a wider context nor have they considered the diversity and
tensions within the wider disability community outside of their speciﬁc disability type.
Trends in anthropological theory are assessed in terms of appropriateness to the research
sample. Theories of the body, embodiment, and social suffering are appraised against the
backdrop of semiotics, new social movements, and social justice. The struggle against

apartheid provided a revolutionary context for the disabled to mobilize, and during

negotiations and reconciliation in the early 19905 they were able to articulate and elevate

disability as a social issue rather than as an under-theorized or apolitical group to be
managed by charity, and the health and welfare sectors. Therefore, the treatment and
placement of the disabled in post-apartheid South Aﬁica becomes critical in the context

of the country's attempts at democratization and the metaphorical link of overcoming

difference.

Keywords: disability, identity, social movements, human rights and social justice,
lifecourse, social change, critical-interpretive anthropology, social

suffering, semiotics

Copyright by
MARTHA MARY LACLAVE
2005

DEDICATION

This dissertation is dedicated to my mother and father, Christine and Thomas Laclave.
Without their emotional, intellectual, and ﬁnancial support, this dissertation would not
have been possible.

ACKNOWLEDGMENTS

Thank you to all participants. This work belongs to you and all disabled South
Africans.

The South African Blind Workers Organization provided Braille services for
informed consent forms and contact cards. Their prompt response to my inquiries eased
my budget and made life easier while in the ﬁeld.

The National Archives of South Aﬁica in Pretoria and the South African History
Archive (at the University of the Witwatersrand in Johannesburg) aided in the access and
retrieval of documents important to Chapter Two in particular.

The Ofﬁce on the Status of Disabled Persons was instrumental in seeing my
arrival in South Africa. Their availability is a quality of good government. Thank you to
Colleen Howell for sharing drafts of the disability history project.

Thank you to Jacob Clirno, my friend and advisor. You provided me an
accessible space that allowed me to grow according to my needs and thought processes.
You are missed. I am thankful for my committee, Judy Pugh, Rita Gallin, Susan Peters,
and John Davis, Jr. Rita, you have made me a better writer.

A Special thank you to Shuaib Chalklen, Dominique Souchon, Naomi Janse Van
Vuuren, and Mark Beare. Your intellectual support and friendships have been sustaining.
Ben Williams and family, you are my township ambassadors and extended family.

Lastly, I am deeply grateful for the love, patience, and support of Oliver Giancola.

vi

TABLE OF CONTENTS

KEY TO ABBREVIATIONS .............................................. ix
PART I
CHAPTER ONE
Introduction ............................................................ 1
Nomenclature ..................................................... 4
The Disabled, Disabled People, People with Disabilities ............. 4
"Participants" ............................................... 5
Black and White ............................................ 5
Historical Chronology ............................................... 6
Setting .......................................................... 11

Theoretical Framework: A Human Rights Perspective
via Social Suffering and Critical-Interpretive Approaches in Anthropology . . . 12

Searches for Meaning: Selves and Identity ....................... 18
Social Movements .......................................... 21
Research Design and Methods ....................................... 23
Limitations and Contributions ....................................... 33
Limitations ................................................ 33
Contributions .............................................. 35
Chapter Summaries ............................................... 36
CHAPTER TWO
Corporeal Bantustans: Histories of the Disabled in South Africa Before 1980 ....... 39
Creating Dependence: Charity and Welfare ............................ 39
Deafness .................................................. 41
Blindness ................................................. 47
Mobility-Related Disabilities .................................. 51
Mental Disabilities .......................................... 55
Discussion: Corporeal Bantustans .................................... 59
CHAPTER THREE
Redeﬁning Engagement: The Disabled Organize ............................... 63
Living Change, Changing Meaning: 19808 Soweto ....................... 65
Transformation: The Movement at its Strongest ......................... 73
Participants in Change: DPSA Steps Up ......................... 73
Is DPSA the Movement? ..................................... 77
Current Assessment: Loss of Momentum ............................... 80
Self-Help? ................................................. 82
Discussion: Practice Between Condition and Action ...................... 83

vii

PART 11

CHAPTER FOUR
The Disabled Subject: Accessibility and Rights .............................. . 97
Lifecourse ...................................................... 98
Childhood, Parents, and Household ............................. 98
Education ................................................ 111
Primary and Secondary Education ....................... 111
College ............................................ 117
Initiation ................................................ 118
Gender, Relationships, and Sex .............................. 119
Comrades .......................................... 124
Everyday Encounters: Pity and Fear in Life's Lessons .................... 124
Tea with Soured Milk: Outings with Friends and Family ........... 125
Earning Potential: Adventures in Economics at Pick n'Pay .......... 129
Forcing Labor: Work, Mental Ability, and Intelligence ............ 130
Discussion: Social Suffering and Identity ............................. 132
CHAPTER FIVE
Emerging and Converging: Understanding Disability Identity and Selves .......... 138
Disability Onset ................................................. 138
Worlds and Identity .............................................. 157
Discussion: Do Type and Age Matter? ............................... 163
CHAPTER SIX
Finding Accessibility, Finding Reconciliation ................................ 166
Selves and Identity in Disability and Liberation ........................ 167
Discussion: Achieving Dignity ...................................... 174
PART 111
CHAPTER SEVEN
Conclusion ........................................................... 176
Medical Anthropology and Identity ............................ 179
Social Suffering vs. Social Struggle:
Everyday Subjugation and Collective Action ..................... 181
The Body/Embodiment Debate ............................... 183
Conceptual Tools in Semiotics ................................ 185
Research and Human Rights .................................. 186
Global Disability Rights .......................................... 187
Future Directions ................................................ 189
APPENDIX A ......................................................... 191
BIBLIOGRAPHY ...................................................... 193

viii

ANC

CODESA

DEAF SA

DICAG

DPI

DPO

DPSA

INDS

NP

NSM

OSDP

PADI

SANCB

SASL

SHAP

TABBA

KEY TO ABBREVIATIONS

African National Congress

Convention for a Democratic South Africa
Deaf Federation of South Africa

Disabled Children's Action Group

Disabled People's International

disabled people's organization

Disabled People South Africa

White Paper on an Integrated National Disability Strategy
National Party

New Social Movement theory

Ofﬁce on the Status of Disabled Persons
People for Awareness on Disability Issues
Reconstruction and Development Program
Rehabilitation International

Resource Mobilization theory

South African National Council for the Blind
South Aﬁ‘ican Sign Language

Self Help Association of Paraplegics of Soweto

Transvaal Association for Black Blind Adults

ix

PART I

CHAPTER ONE

INTRODUCTION

Only recently, and among a small group of scholars, has disability been included
in the discourse on race, gender, ethnicity, nationalism, and other identities. “This failure
to link the relationship of the disabled community to larger cultural patterns is analogous
to a failure to link such relationships as gender and ethnicity to contemporary structures
of power” (Raphael, Salovesh, Laclave 2001 :154). This dissertation uses a human rights
perspective to investigate the multiple realities of disabled South Aﬁ'icans active in the
disability rights movement in the context of rapid social change. Speciﬁcally, this
dissertation investigates: (1) How disability is deﬁned and organized in the context of
democratization and human rights in South Aﬁica; and (2) The multiple ways disabled
South Africans identify with their disability toward an understanding of difference or
political identity. The struggle against apartheid provided a revolutionary context for the
disabled to mobilize, and during negotiations and reconciliation in the early 19905 they
were able to articulate and elevate disability as a social issue rather than an under-
theorized or apolitical group to be managed by charity, and the health and welfare
sectors. Therefore, the treatment and placement of the disabled in the new South Africa
becomes critical in the context of post-apartheid South Africa's attempts at
democratization.

Since its ﬁrst free and democratic elections in April 1994, South Africa's
repressed majority has gained legitimacy and power, fostering and expanding its

discourse of change, empowerment, and non-discrimination. The transition to democracy

is a critical time for restructuring society and its institutions, where core concepts such as
racial identity and citizenship become redeﬁned. Though disabled people had begun to
organize themselves in the late 19805, it was not until the early 19905 that they, and the
organization Disabled People South Africa speciﬁcally, identiﬁed with the larger struggle
against apartheid. This was during proposed negotiations for a transition from
authoritarian rule to democracy, the process of democratization, and disabled people
worked to position disability on the national agenda. The strategic input of disabled
people during this time contributed to the rights-based and democratic goals of the "new"
South Africa. Components of democracy include universal franchise for all adult
citizens; local, provincial, and national elections; a constitution with a justiciable bill of
rights that guarantees the basic human rights of all citizens; free press; and revival of civil
society, to name a few (see Cherry 2000:4; Diamond 1992; Huntington 1991; Phillips
1991). These components of democracy need to be accountable to the pervasive methods
of coercion, hegemony, and control that exist in tension with these goals. The disabled
must continue to be absorbed in the discourse and practice of democracy as an issue of
identity rather than individual tragedy. In other words, disability needs to be understood
as a political identity rather than as a number of affected patients. Structures and services
that have worked in such a way as to perpetuate inequality during apartheid — for
example, policy, education, health and welfare, and employment — must now recognize
disability as difference. Understanding disability socially is a conceptual shift and had to
be included in the process of democratization in order to work toward human rights for

all.

The South African model of disability is a social model. Essential and critical
structures and ofﬁcial government mechanisms have been established largely by pressure
from disabled activists. A5 a result, disability is speciﬁcally mentioned in Chapter Two
of the Bill of Rights of the 1996 Constitution of South Africa. Disability also is
addressed nationally and ofﬁcially through an office in the Presidency (known as the
Office on the Status of Disabled Persons, or, OSDP) and in an outstanding document
(White Paper on an Integrated National Disability Strategy, or, INDS), both of which
work toward the inclusion and integration of the needs and participation of the disabled in
all government departments. This exemplary model of inclusion, how disability became
a social and political issue, is examined through the lives of activists past and present in
the South African disability rights movement. Their experiences are compounded by
elements of competing beliefs of disability (as charity objects, as needing to be "'ﬁxed,"
as somewhat in an awkward social category), race (in the effectiveness of mobilization
for disability rights), and larger social change (the end of apartheid and the legitimization
of the oppressed majority). Despite these hard-won rights, activists have a variety of
interpretations about their own disabilities ranging from rejection of their disability to the
embrace of it that positively deﬁnes them. A uniting element in these interpretations is
accessibility. Accessibility is a common term in disability circles and generally refers to
the physical environment (e.g., ensuring entrance to buildings by building a ramp for
wheelchairs, providing sign language interpreters). However, accessibility to these
participants also means acceptance, inclusion, and fulﬁllment of rights. This theme has
been deﬁning on an individual level in the creation of self and identity, and collectively

in the articulation of movement goals. This dissertation explores these interrelationships.

NOMENCLATURE
The Disabled, Disabled People, and People with Disabilities
This dissertation follows the American Anthropological Association's (AAA)
Manual of Style. It is based on the Chicago Manual ofStyle, 14th edition, 1993
(Grossman). Where a concern is not covered in the AAA guide, the Chicago guide is the
next reference for consultation. While other style manuals now advocate person ﬁrst
language, that is, a person with a disability or people with disabilities (as in the American
Psychological Associations Guidelines for Non-Handicapping Language), neither the
AAA Manual of Style nor the Chicago Manual of Style explicitly clarify or even mention
disability. Person ﬁrst language has been favored by disability activists, emphasizing the
person rather than the disability in an attempt to underscore their humanity.
Nevertheless, people with disabilities are gaining understanding and control of identity
and deﬁnition issues, they have begun to reject person ﬁrst language. The disabled have
entered the identity politics arena and argue that just as it is ridiculous to refer to a
woman as a "person who is a woman," for example, it is equally so to say a "person who
is disabled." Person ﬁrst language emphasizes the individual and his or her malady rather
than a political identity and public issue. Titchkosky (2001:135-136) identiﬁes two
interpretive moves with person ﬁrst language in relation to how the disabled have used
the term: "ﬁrst, it separates the individual from disability and, second, it circumscribes
disability as some-thing (bad) that is only understood in relation to its attachment to
individuals. While ironic, this is also political and, while political, its politics are
hidden." Hence, disabled and disability have become common terms used by disability

rights activists and are making their way into the discourse of policy makers and

healthcare professionals.1 I agree with the above arguments. However, people in this
study use both "disabled people" and "people with disabilities" as well as a number of
other terms, described in depth in Chapter Five. I use the disabled and people with
disabilities according to the above conditions.

"Participants "

The people interviewed, who shared their lives and allowed me to observe and
talk with them, provided the data for this study and deserve to be called "participants"
rather than "informants." While "informants" is the usual term used in anthropology, it
connotes a disengaged source of information. This study concerns activists in a
movement that is currently in a process of redeﬁnition. The material of this study is
useful to them and will potentially evolve into a movement discussion document. They
deserve to be called "participants" and I will use that term in this dissertation.

Black and White

In the South African context, "community" has been used interchangeably with

"race, ethnic group, nation," or "peoples" to maintain that "communities" must also
develop "separately" (Thornton and Rarnphele 1988:30). These terms are appropriately
qualiﬁed with quotations because they must be approached as interpretations rather than
as descriptions of reality. The history and usage of "ethnic group," "race," "tradition,"
"tribe," and other terms contribute to the discourse of domination in South Africa. The
portrayal of South Africans by missionaries, explorers, colonists, early historians, and
anthropologists gave the impression of bounded, static, unchanging social entities, oﬁen

reinforcing "tradition" and "inherited culture." "Tribes," for example, even during the

pre-colonial period, never existed with observable linguistic, cultural, political and

 

' See Linton (1998:8-33) for further discussion on the political uses of these terms.

economic boundaries (Skalnic 1988:72; see also Marks 1992:128 and Kuper 1969:479-
480 and 1975). Many of these terms are still debated in the social sciences. If
primordialism - “the idea that phenomena can be explained by reference to ‘ultimate’
causes, typically ‘race’ and ‘culture’” (Hammond-Tooke 1997:5) — was challenged by
postmodern theories surrounding the Other and identity, why do anthropologists continue
to refer to the Zulu, the Tsonga, the Ndebele, and other seemingly identiﬁable groupings
(Skalnik 1988:77-78)? While people may have an ethnic consciousness, an awareness of
being Zulu or Xhosa, or Sotho or Tswana, as Marks (1992:128) explains, "the
reinforcement, manipulation and construction of ethnic identities have been at the heart
of segregationist policies of the state before 1948 as they have been central to its
apartheid policies since." Hence, borrowing from Cherry (2000:63), I will use the term
"black" to include all "peOpIe of color," meaning those considered Colored, Indian, or
African in South Africa (see also Boonzaier 1988:64-65). Thornton (1996: 150)
accurately states, "South Africans have multiple identities in common contexts and
common identities in multiple contexts." This statement will be used throughout this
dissertation because it is a cogent reminder of the situation, aiding in the understanding of
portions of analysis.
HISTORICAL CHRONOLOGY

South Africa's colonial history essentially begins with the establishment of a
refreshment station in Table Bay by the Dutch East India Company, commonly known as
the VOC or Verenigde Oost-Indische Compagnie. Founded in 1602 to coordinate Dutch
trading expeditions to the East Indies, the VOC controlled all Dutch trade east of the

Cape of Good Hope (Saunders and Southey 2001 :60). The Dutch-Khoikhoi wars (1659 —

1660 and 1673 —— 1677) in the south-westem Cape ended with the Khoikhoi failing to
expel the Dutch from the area and Dutch expansion beyond the peninsula. Between 1795
and 1806, the British occupied the Cape partly due to bankruptcy of the Dutch colonial
administration. The Dutch formally ceded the Cape to Britain in 1814, providing
opportunity for the British to develop a colonial state and dominant power for the
remainder of the 19th century (Saunders and Southey 2001 :31).

Diamond and gold discovery in the late eighteenth century spurred further interest
in control. Wars between settlers and African peoples as well as between British and
Dutch and Afrikaner settlers ensued, forging deep political ﬁssures with very human
consequences. For example, the British military established concentration camps for
Boer women, children, families of surrendered Boers, and Aﬁ'icans who could or
provided assistance to Boer guerrillas beginning in 1900 during the South African War
(1899 — 1902) (also known as the Boer War).2 Tens of thousands died in these camps
from unsanitary and overcrowded conditions (Saunders and Southey 2001 :49; see also
Spies 1977).

The Union of South Africa came into being in 1910 and racial segregation
developed on a more comprehensive scale shortly thereafter, even before the election of
the National Party in 1948. An example of such actions is the Natives (Urban Areas) Act
of 1923 that established locations for Africans in urban areas. The thinking and

theorizing involved in devising or implementing racial segregation is also highlighted

 

2 Boer is Afrikaans for 'farmer.’ As per Saunders and Southey, the term referred to white farmers in the 18th
century, but in the 19"I century was used to refer to Afrikaners in general, or the white inhabitants of the
Voortrekker republics and those ﬁghting on the republican side of the South African War (2001 :27).
Further, "The term came to have derogatory connotations when used by non-Afrikaners. When used by
English-speakers, it suggested backwardness and lack of culture, and many blacks used it for any white
person associated with racism and apartheid" (Saunders and Southey 2001:27).

through the early history of anthropology in South Africa. There has been a relationship
between anthropologists and anthropological thinking of culture and society and the
creation and legitimization of apartheid (Gordon 1991). The early practice of
anthropology in South Africa from the 19205 — 19405 was divided between two
approaches, volkekunde (or cultural anthropology as per West 1988; or ethnology as per
Gordon and Spiegel 1993:84) and social anthropology. Volk is derived from ethnos
theory, which developed among German anthropologists of the pre-war period (Sharp
1988b:19; Gordon 1991:79-80). Ethnos theory conceives mankind as divided into volke
(nations, peoples), each volk having its own culture where people are ascribed to volk and
acquire volkspersoonlikheid or volk-personality (Sharp 1988b: 19). P. J. Coertze and
Werner Eiselen relied heavily on this theory in their vision for volkekunde in South
African universities, ultimately forming volkekunde as an indigenous South African
anthropology (Gordon 1991; Sharp 1981). All volkekunde professors were ardent
Nationalists and participated in formulating Broederbond “Native Policy” that later
became government policy (Gordon 1991 :82). The Afrikaner Broederbond was a secret
ﬁ‘aternity and under D. F. Malan supported the Puriﬁed National Party, mobilizing
Aﬁ'ikaner votes for the National Party in 1948. Afrikaner nationalism, as a political
philosophy with a speciﬁc history, precedes the concept or idea of volk (Sharp 1988az82-
84). As explained above, the portrayal of Aﬁ'icans by missionaries, explorers, colonists,
early historians, and anthropologists gave the impression of bounded and static groups.
The volk concept's contribution to Afrikaner nationalism masks class and other power
relations (see Nagengast 1994:118-119). Volk and ethnicity have conceptual and

effectual similarities. Alonso (1994:391) cogently explains:

In contrast to nationalism, ethnicity is partly an effect of the particularizing
projects of state formation, projects that produce hierarchized forms of imagining
peoplehood that are assigned varying degrees of social esteem and differential
privileges and prerogatives within a political community (see also Dominguez
1986; Norton 1984; Smith 1993; Williams 1991; Comaroff 1992).
The National Party could capitalize on volk as a conceptual component of Afrikaner
nationalism. Indeed, the words of Nelson Mandela (1961 :15) from underground remain

accurate:

To the Afrikaners the proclamation of a republican form of government

represented the ﬁnal triumph of their rancorous struggles against British

domination. It meant that the ﬁnal link with the British Crown had at last been
broken, that the sovereignty of the "volk" had at last been realized and could now
be enjoyed. But to the 10,000,000 Africans, and to the other non-white sections
of the population, the Republic was a form of government based only upon force
and fraud. Under it white supremacy, the savage suppression of the rights and
aspirations of the non-white peoples, would be practiced. To them, such a society
was totally unacceptable, and a campaign to give concrete expression to this
opposition was immediately started.

South Aﬁ'ica's legacy of apartheid is evident in almost every page of this
dissertation. The gravity and extent of apartheid has seared deep scars in the country and
people. In Afrikaans, 'apartheid' means 'apartness.’ The term refers to the policy adopted
by the National Party (NP) in the early 19405 and its broader application (Saunders and
Southey 2001 :12). 'Separate development,‘ in this instance is structural violence. It is
institutionalized oppression and dehumanization.

Apartheid legislation was implemented in an ad hoc manner (Saunders and
Southey2001 : 12). With a patchwork of laws established in the 19505, apartheid was at its
most developed stage in the 19605. Such legislation included the Prohibition of Mixed
Marriages Act (1949), Suppression of Communism Act (1950), Population Registration
Act (1950), Group Areas Act (1950), Bantu Authorities Act (1951), Bantu Education Act

(1953), Public Safety Act (1953), Separate Amenities Act (1953), and Criminal Law

Amendment Act (1953). Apartheid underwent reformulation in the late 19705 due to
international pressure and strong internal resistance (Saunders and Southey 2001 :13), and
economic hardships created more violence. Administering the network of apartheid laws
was becoming very costly during this time of recession (Thompson 1990:221).
Contributing to this changed state of affairs was a shortage in skilled labor, inﬂation, a
growing white poor, emigration of professional white people from South Africa, a
growing black population (Thompson 1990:221-222). In another respect, Aﬁ'ikaner
solidarity, key to electoral success of the National Party in the 19605, was becoming
divided (Thompson 1990223).

The 19805 were a decade of "reform" in South Africa where "development" and
upliftment were stressed for the "backward" sectors of the population (Sharp 1988b:9).
The dramatic nature of these changes was capped by the emergency years (1985 through
1990), which was essentially a civil war. One such "reform" enacted by the National
Party (NP) was their approval of a tricameral parliament as an integral part of the new
constitution proposed in 1984. In addition, a proposed tricameral parliament separated
government affairs into houses for whites, coloreds, and Indians. These developments
ampliﬁed unrest, especially in the townships, where people were still ignited ﬁ'om the
1976 riots. Violence related to the struggle was high, with 2,987 deaths and 45,000
detained during 1984 and 1987 (Manganyi and du Toit 1990:1-2). The ideas and
concepts of black consciousness, rising in the mid-to-late 19705 and growing in the
19805, became instrumental in freeing Africans from negative self-opinion. People in the
townships during the mid-19805 used civic organizations as a form of popular control and

direct democracy, reclaiming authority with the loss of state control (Cherry 2000;

10

Chabedi 2003:361). It is under these conditions of the township environment and
struggle for liberation that the Self Help Association of Paraplegics of Soweto (SHAP)
and the emerging disability rights movement is rooted.
SETTING

Research took place from November 2002 to October 2003, with two preliminary
exploratory ﬁeld trips in 1998 and 2000. A total of 15 months was spent in South Africa.
Research activities were focused in Johannesburg and Soweto in Gauteng province,
because they were segregated areas during apartheid. Johannesburg is the largest
metropolitan area in South Africa (City of Johannesburg 2003:9), growing from the
discovery of gold on the Witwatersrand in the 18805. During and after World War II,
tens of thousands of Africans searched for work in Johannesburg and lived in shanties
outside of the city (Saunders and Southey 2001:160). Adequate accommodation was not
provided because the government did not want to encourage permanent residence of
Africans so close to Johannesburg.3 Soweto is an acronym for South West Township,
depicting its coordinates in relation to Johannesburg, and not a name with "indigenous"
roots. Soweto is a product of segregationist planning and has been the grounds of
struggles for inﬂuence between the different tendencies in the Aﬁican opposition to
colonialism and apartheid. In the mid-to-late 19805 it was a political hotbed for deﬁance
campaigns. In this context, participation in disability-related organizations can reﬂect or
mediate such tensions, and indeed the South African disability rights movement has its

roots in Soweto. Organizations for the disabled in Johannesburg and Pretoria did not

 

3 Johannesburg and Soweto are approximately 15 kilometers away from each other.

11

reach Soweto and provided a spark for the disabled in the townships to mobilize in the
late 19705 and early 19805. 4

Gauteng is the smallest in area of South Africa's nine provinces, but the most
populated. In the year 2001, Gauteng included 8,837,178 residents, or 19.7 percent of
South Africa's population (Statistics South Aﬁ'ica 2003:6-7). The total p0pulation in
South Africa for that year was 44,819,778 (Statistics South Africa 2003:6). "Black
Aﬁicans" comprise 73.8 percent and 79 percent of the province and country, respectively
(Statistics South Aﬁica 2003:10, 12). Similarly, "Colored" are 3.8 percent and 8.9
percent; Indian or Asian 2.5 percent and 2.5 percent; and "White" 19.9 and 9.6 percent
(Statistics South Africa 2003:10, 12).5 Five percent, or 2,255,982 people, of South
Africa's population is disabled according to the 2001 South African census (Statistics
South Aﬁ‘ica 2003:39). Of that number, 331,611 people in Gauteng are disabled, visual
disabilities being the most common (91,304), followed closely by physical disabilities
(84,917), then hearing (39,318), emotional (37,847), multiple (35,067), intellectual
(32,970), and communication disabilities (10,188) (Statistics South Africa 2003:38-39).
Of South Africa's disabled people, 1.3 percent have visual disabilities; 1.2 physical
disabilities; 0.7 hearing disabilities; 0.6 emotional; 0.6 multiple; 0.5 intellectual; 0.2
communication (Statistics South Africa 2003:39).

THEORETICAL FRAMEWORK:

A HUMAN RIGHTS PERSPECTIVE VIA SOCIAL SUFFERING AND
CRITIAL-INTRERPRETIVE APPROACHES IN ANTHROPOLOGY

 

‘ "Township" is a colloquial term used in South Africa to describe the urban residential areas designated
under apartheid for Africans and these areas are still referred to as "townships."

5 For the 2001 Census, Statistics South Africa classiﬁed people by population group to monitor progress in
the move from apartheid-based descrimination. They note that "membership of a population group is now
based on self-perception and self-classiﬁcation, not a legal deﬁnition" (Statistics South Africa 2003:vii).

12

Human rights are internationally agreed values, standards or rules regulating the

conduct of states towards their own citizens and towards non-citizens. [Baehr

1 999: 1 ]

According to Messer, anthropologists have contributed to the efforts of human
rights in two critical ways (1993:221). First, anthropologists provide cross-cultural
research about what rights are and to whom they apply (Messer 1993:221). Second,
anthropologists have monitored compliance with human rights standards, and identiﬁed
and expanded on the incidences of human rights violations and abuses (Messer
1993:221). In his essay "On Torture, or Cruel, Inhuman, and Degrading Treatment,"
Asad analyzes Article 5 of the Universal Declaration of Human Rights and ﬁnds that new
ways of conceptualizing suffering are "universal in scope but particular in prescriptive
conten " (Asad 1997:285). To illustrate, Asad cites 8cm in saying that war is "the most
obvious analogue to torture" (Scarry 1985261), but furthers the argument by saying "that
the general concept of 'cruel, inhuman or degrading treatment or punishment' is not
applied to the normal conduct of war even though modern technological warfare involves
forms of suffering that are, in scope and kind, without precedent" (Asad 1997:297).
Anthropologists recognize how states use violence as a means of social control, reshaping
or maintaining social boundaries, creating or manipulating meaning, and silencing
resistance. These areas of investigation are broadened by a growing number of
anthropologists using a critical-interpretive approach to investigate social suffering.
Critical-interpretive anthropology attempts to bridge the impasse between the two
approaches. Interpretive approaches are meaning-centered and able to locate the social

Signiﬁcance of suffering as related to experience at the individual or micro level of

analysis. Critical perspectives are often informed by Marxist theories, political economy,

13

or world systems theory, and address more macro levels of analysis. Social suffering
concerns what political, economic, and institutional power does to people and, in so
doing, issues of human rights become more lucid (Kleinman, Das, Lock 1997:ix-xxvii).
Social suffering is the result of "the devastating injuries that social force inﬂicts on
human experience" (Kleinman, Das, and Lock 1996: ix-xxvii). It is the effect of social
violence that social orders, be they local, national, or global, inﬂict on people (Kleinman
1997:226). Kleinman expands this description to include "the responses to human
problems by the institutions of social policy and programs that are in principle organized
to ameliorate the problem" (1997:226). Investigating social suffering with the strengths
of the two approaches, critical and interpretive, upholds or buttresses a human rights
perspective.

Studying disability provides an opportunity to explore human rights. Violent
conﬂict, though not unique to South Africa, has been central to its modern history
(Beinart 1992:455). But political violence can be expressed indirectly, as through the
perpetuation of poverty. These are hidden violences of apartheid (Coovadia and Jinabhai
1990:98) manifested in deaths, illnesses, depressed quality of life, and disability. It
should not be too far of a stretch to say that control can be aided through the creation of
disabled bodies. Mechanisms of disablement are varied: poverty leads to disability;
"acciden " such as road violence; riots and participation in political activity, especially
during the 19805 in South Aﬁ‘ica; sports injuries; mining and other labor-related activity
are a few examples. All of these mechanisms are political. Disease from lack of medical
attention, malnutrition, lack of resources (such as clean water), and the diseases of

poverty all contribute to disability. An injury is not an accident, for "accident" connotes

14

a neutral event without respect to causation, intentionality, and predictability (Bijur
19959). Sports injuries can be differently applied to class. Mining and other industries
have killed and disabled thousands of workers. All of these examples have social
impacts.

I ﬁnd that disability in South Africa, as social suffering, is contested in terms of
identity. The disability rights movement and the transition to democracy in South Africa
reformed disability identity through a redeﬁned concept of accessibility. Disability
identity, in South Africa, is both informed by and contributes to the current discourse of
change in South Africa. Disability identity in this context embraces accessibility and
empowerment. Accessibility to these disabled participants means acceptance, inclusion,
and fulﬁllment of rights. Accessibility, in another sense, is what other identities demand:
the right to participate in a socially meaningful way, equality, non-discrimination, access
to education and employment, and other fundamental components of democracy. A
comparison with ethnicity helps illustrate these goals. Ethnicity, as deﬁned by Sharp
(1988az80), "is the pursuit of political goals — the acquisition or maintenance of power,
the mobilization of a following — through the idiom of cultural common-mess and
difference." Adam (1995:473) follows a similar deﬁnition and writes that ethnicity also
has been used to designate "a historical community of cultural similarities with a shared
sense of solidarity and belonging, memories and symbols or methods of descent" (see
also Smith 1986:22). Identities, of course, can be created, used, or responded to in
political ways by those in power. For example, there was a shift in the early 19605 in
South Africa from racial to cultural rhetoric, from race to ethnicity (Boonzaier 1988:65).

While this was simply a change in terminology for some people, there was a gradual

15

conceptual shift (Boonzaier 1988:65). Adam (1995:462) further explains that ethnicity
became more "saleable" and useful for the maintenance of apartheid (Bekker 1993:26).
Opposition groups or movements interpreted and used ethnicity in various ways to further
their cause and philosophy (e.g., the Inkatha Freedom Party attempts to mobilize Zulu
nationalism by harnessing various symbols and "traditions"). Identity can be used by
individuals, too, toward more accurate representation, as with the use of the term "black"
that I discussed above in "Nomenclature." Identity has also been used to better one's
economic status, but at a price. "Pass-whites" or "play-whites" in South Africa were light
skinned peOple living in white areas, but by birth considered "colored" (i.e., "mixed
race") generally, but were "passing for white" or "trying for white" officially according to
the Population Registration Act. Being considered white had advantages for
employment, access to better housing, and other resources. In this way, pass-whites were
located on the "remote boundary of the white race in constant danger of being expelled
from it" (Teppo 2004:94). Conversely, Teppo (2004294) explains, "it was dangerous for
a dubious-looking white to be seen as a pass-white". A pass-white could be uncovered at
any time by existing in such a fuzzy area. "Sometimes white-looking parents had darker
children, called 'throwbacks' who revealed a coloured family history" (Teppo 2004:95).
Identity, therefore, can be understood as a politically motivated, socio-emotional need
and is applicable to disability identity as a response to the forces that oppress and repress
the disabled.

Disability identity, like other identities such as race and gender, pursues political
goals, and is based on an expanded deﬁnition of accessibility that includes the removal of

physical, social, economic, political, and other barriers for meaningful participation in

16

society. This is made more complex because as Thornton accurately and simply
describes, "South Africans have multiple identities in common contexts, and common
identities in multiple contexts" (1996:150). Disabled people began to understand the
nature of being disabled in broader and more political ways with the disability rights
movement. They began questioning and rejecting the individual perspective of disability
as tragedy, and engaged with the larger struggle for human rights, most prominently in
the revolutionary context of the early 19905. Disabled people have learned to manage
their disability socially in ways similar to that of other identities, but can oﬁen ﬁght with,
resist, or embrace the meanings of disability to their existence. Their self or selves shift
in response to context, and can exist in tension or fusion, from one conveyed memory or
experience to another. In one sense, the struggle for disability identity is explained as no
different from, is similar to, has nothing to do with, or is informed by the struggle against
apartheid. In another sense, a disabled identity is accepted into the shuffle of selves,
rejecting a dominant discourse of disability as Othering. Hence, identity can also be a
dialectical and discursive relationship of the self and situated experience.

Given this, research design, method, and theory deviate from the more typical
works on social suffering. My perspective on human rights is inﬂuenced by the
participants' views and by spending time in South Africa. Duties to uphold human rights
are not only the responsibility of state parties, but individuals as well. This statement is
also what lends the African Charter on Human and Peoples' Rights (the Charter of
Banjul) its speciﬁc character (see Baehr 2001:80-82). To implement the Charter, the
African Commission on Human and Peoples' Rights serves to promote, rather than

protect, human rights (Baehr 2001 :81; Welch 1992:44, 49). Baehr (2001217) explains

l7

‘uu‘ '

that the differences between East and West were in their emphasis on the rights of society
as a whole versus a strengthening of international supervision. The differences between
the South and the North, however, is in the South's emphasis on the importance of the
right of self-determination, peoples' rights, and the duty toward society next to individual
rights (Baehr 2001217). Social suffering, although an attractive approach, is limited in
ways related to my perspective on human rights. While social suffering is the result of
social force on human experience (Kleinman, Das, and Lock 19962ix-xxvii), the
perspective detracts from participants' efforts at collective struggle. The following two
subsections outline my modiﬁcations to a social suffering perspective that is more
accountable to the realities and histories of the participants in this study.
Searches for Meaning: Selves and Identity

Identity as a politically motivated, socio-emotional need is applicable to disability
identity as a response to the forces that oppress and repress the disabled. But identity is
also a dialectical and discursive relationship of the self and situated experience. Identity
used to refer to ‘sameness’ and in psychology meant ‘selfsameness’ (Sbkefeld 19992
417). Csordas (1994:331) notes a trend in social psychology to isolate aspects of the self,
as in self-concept, self-image, self-awareness, self-esteem, for analytical purposes (Gecas
1982). In terms of semiotics, self means self-representations while self-experience refers
to the pre-cognitive; but the self in any of these distinctions remains culturally organized
(Ewing 1990). Cultural anthropologists, though, argue that 'selves' are culturally shaped
and inﬁnitely variable, hence the idea of 'shifting selves' (Ewing 1990:253-254). Ewing
argues: '

. . . that in all cultures people can be observed to project multiple, inconsistent
self-representations that are context-dependent and may shift rapidly. At any

18

particular moment a person usually experiences his or her articulated self as a

symbolic, timeless whole, but this self may quickly be displaced by another, quite

different "self," which is based on a different deﬁnition of the situation. The

person will often be unaware of these shifts and inconsistencies and may

experience wholeness and continuity despite their presence. [1990:251]
In light of this, she proposes that people manage inconsistency through semiotic
processes, through the construction of a series of self-representations based on "selected
cultural concepts of person and selected 'chains' of personal memories" (Ewing
1990:253). Further, "Each self-concept is experienced as whole and continuous, with its
own history and memories that emerge in a speciﬁc context, to be replaced by another
self-representation when the context changes" (Ewing 1990:253). This is counter to the
claim anthropologists make that the "experience of wholeness, continuity, and autonomy
that we normally associate with the 'self' is a culture-bound, Western notion that is not
applicable to most non-Westem cultures, where the self is experienced contextually and
rationally (Ewing 1990:253; see also Shweder and Boume 1984)."

There is a connection between anthropologists seeking selves and semiotics.
Rosaldo (1984:140-141) ﬁnds connections with self and identity, and further detaches

from a perceived bounded Western notion of self:

If culturally organized views of possibility and sense must ﬁgure centrally in the
acquisition of a sense of self — providing images in terms of which we
unselfconsciously connect ideas and actions - then culture makes a difference that
concerns not simply what we think but how we feel about and live our lives.
Affects, then, are no less cultural and no more private than beliefs. They are
instead, cognitions - or more aptly, perhaps, interpretations — always culturally
informed, in which the actor ﬁnds that body, self, and identity are immediately
involved.

In her ethnography, Craﬁing Selves: Power, Gender, and Discourses of Identity in a
Japanese Workplace, Kondo's general impression is of the self as register of the spatial

and aesthetic, ﬁnding tensions and contradictions between external constraint and internal

19

reality - both within the community she studied as well as within herself. Many of the
chapters in Devish’s (1993) account of Yaka healing and ontology are descriptions aimed
at sensory perception and emotional states, locating the signiﬁeds that contribute to
multiple levels of expression and expanding knowledge that account for affective and
bodily experience in therapeutic processes.

Further, I ﬁnd that anthropologists with a variety of foci discuss "meanings," be
they ﬁelds of meanings, locations or layers of meanings, bodily meanings, or hidden
meanings. The body produces meaning for use in understanding reality (DiGiacomo
1992; Sheper-Hughes and Lock 1987:19). But there are other ways anthropologists use
"meanings." Escobar (1992:408) ﬁnds that work on contemporary social movements
look to ﬁelds of meaning to ﬁnd dominant codes, and argues that conﬂict takes place in
meanings (see Melucci 1988). It is in ﬁelds of meaning where the movement takes place
(Burdick 19952369), or even to unearth tropes of nationalism (Alonso 19942386). In all
of these "locations" it seems that "meanings" have come to be the redeﬁnition of
"culture" without using or owning up to using the word as it is assumed that
anthropologists know what it is or can deﬁne it in a concrete, useful, or "meaningful"
way. Anthropologists do not rely on "public rituals, codiﬁed belief systems, and
sanctioned familial or communal structures" anymore for "capturing the distinctiveness
of a culture," as Marcus and Fischer argue (1986245). One avenue anthropologists have
taken is personhood as a unit of analysis (Marcus and Fischer 1986245) and l have done
that in Chapter 4 through an examination of the lifecourse and everyday life.
Anthropologists are concerned with meaning from the very beginning and are continuing

to develop and look toward meaning as empirical data. I pay close attention to the ways

20

people come to understand disability in their own lives and what it means to them, and
how or if these explanations are utilized to forward disability rights. The spaces to ﬁnd
such data are in rapidly shifting, context-dependent, and inconsistent narratives and
observations.

Semiotics examines how signs come to mean and have meaning (Tomaselli
1996:30). The catalyst or vehicle for meaning is in signifying practices. While a sign
stands for something else, it signiﬁes meaning. In other words, "Signs elicit other signs
in necklaces of signiﬁcation" (Tomaselli 1996:35). Semiotics offers conceptual tools,
and is not a theory in itself. Anthropologists have been using some of the tools, such as
metaphor and discourse. They acknowledge that discourse is the locus of power and
knowledge and therefore must be viewed as discontinuous and fragmented, the uses of
which are neither uniform nor stable (Foucault 1978). Semiotic tools enable
understanding of the pushes and expanding of discourse in a different way by not
separating the perforrnative aspects from discourse, and recognizing that discourse
includes the unsaid, silenced, and emotionally unavailable. These signs and codes are
what "make sense" to the people involved through the construction of counter ideology.
A disability identity, developed through participation in the movement, provided some of
the vision needed to break from an embodied social suffering.

Social Movements

Because this research involves the disability rights movement, contemporary
social movement theory is a logical direction. Two theoretical paradigms, the new social
movement approach and research mobilization perspective, dominates the study of social

movements (Canel 1997; Cohen 1984; Klandermans 1986; Melucci 1984; Salman 1990).

21

Both approaches examine social movements differently yet are compatible due to
attention to different levels of analysis. While a new social movement approach is
concerned with the "why" of social movements, resource mobilization is concerned with
the "how," the contextual and strategic of social movements. Social scientists have called
for an integration of the two approaches to better explain the logic that moves social
movements (Canel 1997; Escobar and Alvarez 1992).

New social movement theory emphasizes shared meanings and identity politics
rather than the politics of distribution and structure that characterize resource
mobilization theory (Zugman 2003: 154). Beginning in the early 19805, social movement
theorists postulated that new movements and organizations deal primarily with issues of
identity and meaning rather than traditional class-based organizations like unions or
political parties (Zugman 2003:154). Moving beyond economic and class-based sources
of conﬂict, emphasis is shifted to the constitution of new identities (Canel 19972201).
While new social movement theory has opened the reasoning of why people mobilize, it
does not sufﬁciently interrogate the strategies involved in mobilization. A major critique
of new social movement theory is its ﬂawed assumption that group identity is developed
prior to strategy (Canel 1997:202). "Identity develops only in the process of interaction
with other social forces, and organizational and strategic concerns are an integral part of
it" (Canel 1997:202).

While new social movement theory is good at developing general theoretical
postulates, it is weak in analyzing micro-contexts, a void accommodated by resource
mobilization theory. A critical distinction between social movements and social

movement organizations, or, preference for change and organized action for change (see

22

McCarthy and Zald 1977; Canel 19972211) contributes to the analysis of South Africa's
disability rights movement. This analytical distinction is accountable to the currently
reported loss of movement momentum. While a powerful organization became the voice
of the movement at the time of transformation to democracy in South Africa, its current
reputation suffers. More importantly, when participants assessed the current state of the
movement, they referred to the umbrella organization speciﬁcally. This transposition of
the movement to organization is explainable considering that a social movement
organization carries the movement message. Meaning is again addressed with regard to
social movements in this dissertation because social movements are one way to foster
identity.
RESEARCH DESIGN AND METHODS

This research departs ﬁ'om more characteristic approaches in medical
anthropology and disability studies in that it includes (1) people with multiple disability
types, (e.g., blindness, deaﬁiess, mobility, and other disabilities); and (2) people with
various ages of disability onset. Although I do not particularly like using the term "type"
with disability, disability type has been critical in maintaining and directing services, and
participants speak of disability type in relation to mobilizing. Ethnographic studies on
disability have examined disability in several ways. First, they have examined disability
qualitatively by cultural immersion; second, they have included international contexts,
ﬁlling in the void from the body of work that tends to focus on North American and
European contexts. International settings for disability research are needed because,
according to the United Nations (1986), approximately 80 percent of the world’s disabled

population lives in developing countries, and within those countries the disabled are last

23

on the list of social and economic initiatives. Third, ethnographic studies on disability
can focus on tensions within the disabled community, everyday coping, and the various
forms of oppression experienced.

Those anthropologists who have been able to describe the tensions within the
disabled community and everyday coping, however, fail to address what those actions
mean when considering the wider sociocultural context. How are such divisions created
or maintained? The people they study may be struggling with issues of identity; creating,
modifying, or recreating meaning through their lifetime and with community interaction;
or creating new practices to challenge the dependency forced upon them. Some of these
studies cannot answer how discourses emerge. The research design may be too narrow,
only including one type of disability (such as blindness or deafness). Disability then
becomes a small, speciﬁc sector of health or welfare that calls the attention of speciﬁc
professions or charities to remedy rather than the larger categorical identity and rights
issues it has become. Certainly, each disability type has its uniqueness and intricacies of
experience, but researchers need to assess how each type fares with other disabilities in
competition for resources and representation by organizations. Research in disability
studies, however, is also guilty of focusing on disability type. Disability studies is a
relatively new ﬁeld incorporating critical theory and the spirit of liberation. By placing
people with disabilities in wider social contexts, researchers hope to spur social change.
As with the literature on feminism and disability, it is also within disability studies that
people with disabilities are not placed within an individual model, targeted as "ill," or

reasons for telethons. Rather, people with disabilities are viewed as social agents.

24

The age of disability onset, the other characteristic form which this dissertation
departs ﬁom social science research on disability, is important to identify a range of
experiences and discover some of the thoughts and actions of the disabled in important
life events. People disabled at an early age often have choices made for them by parents
while those disabled after their social and economic positions are established face
redeﬁnition. One study with a representative sample was able to estimate the levels of
integration of a disabled person within the family. Schneider, Claasens, Kimmie,
Morgan, Naiker, Roberts, and McLaren (1999) found in South Africa that the age of
onset and the number of disabilities are the two most crucial variables in determining the
level of integration in an individual‘s family:

The earlier the onset and the greater the number of disabilities, the less integrated

the person is likely to be within their family. The later the onset and the less

number of disabilities, the more likely the disabled person is to be integrated
within their family. Of respondents with one disability 67% had a high level of
participation compared to 49% of those with three disabilities or more. Of
respondents with age of onset before two years of age, 41% had a high level of
participation compared to 66% of those with age of onset after 19 years of age.

These two factors override the effects of race, type of disability and sex in

determining level of integration. [1999231]

While the age of disability onset is important in terms of family integration, participants
traveled various trajectories in their understanding of disability in terms of personal and
political identity. Therefore, attention to the lifecourses of participants produced two
needed data components: insight into the personal changes participants experienced in
terms of identity, and the multiple ways the disabled experience oppression and
repression.

Attention to the lifecourse also structures "accounts of personhood and the quality

of experience in a culture" (Marcus and Fischer 1986261). The emphasis "is not on the

25

cultural construction of personhood, but the typical phases and events that each
individual passes through" (Marcus and Fischer 1986:61). Therefore, although many of
the life events vital to personhood are generally said to accept the disabled, they are
discussed more in terms of achieved experience or desired goals. The lifecourse also
offers a window into identity and representation, memories and experiences of
fundamental perceptions. By examining local concepts of 'person,’ 'individual,’ and 'self‘
a better understanding emerges of the promotion or restriction of access to personal and
subsistence security, responsibility for action, and deﬁnitions of conscionable behavior,
thereby contributing to human rights research (Messer 1993:241).

The lifecourse helped structure narratives and is a way to emphasize personhood
in ﬁnding typical phases and events participants experienced in relation to their able-
bodied peers (see Marcus and Fischer 1986:45-68). Disability often questions
personhood, and the issues of personhood are both implicit and explicit in the collected
narratives. The lifecourse and everyday life encounters with the able-bodied highlights
this unstable ground. The attention to lifecourse structures "accounts of personhood and
the quality of experience in a culture" (Marcus and Fischer 1986261). The emphasis "is
not on the cultural construction of personhood, but the typical phases and events that each
individual passes through" (Marcus and Fischer 1986:61). Therefore, although
participants reported that many of the life events vital to personhood are generally said to
include the disabled, their narratives described this more in terms of their achieved
experience and desired goals for all disabled people than common experience or
expectation. Everyday life experiences are covered in a separate section of this chapter

because they contribute to illustrating the practices participants used to combat negative

26

treatment based on their disability. These are everyday resistances practiced in the face
of those who treat them as objects. Everyday life becomes key in a social suffering
perspective. At once collective and individual, everyday life embodies the connectivity
of social suffering. Perhaps unique to the disabled, these everyday resistances can be
directed to family members who "don't get" disability.

Attention to the lifecourses of participants produced two needed data components:
insight into the personal changes participants experienced in terms of identity, and the
multiple ways the disabled experience oppression and repression. Lifecourses also
helped structure narratives and was a way to emphasize personhood in ﬁnding typical
phases and events participants experienced in relation to their able-bodied peers (see
Marcus and Fischer 1986:45-68). The age of disability onset becomes integral to
investigations of disability identity formation because chronic illnesses and disability at
different times in the life course force reevaluation of life choices. Those disabled since
childhood or at birth have many life choices made for them, such as career choices,
education, and marriageability. Those disabled during adulthood, or after their social and
economic position is well established, face a different constellation of challenges that
include navigating their environment with a now disabled body. Personhood often
changes with illness and the need to preserve a social self becomes integral not only to
persons affected (Luborski 1994; Nydegger 1986; Talle 1995; Udvardy and Cattell 1992)
but to their family and community. Personal support to those with chronic illness or
disability further illustrates these changes (Ben-Sira 1983; du Toit 1994; Fisher and
Galler 1988) and is dominated by interaction with the able-bodied and inaccessible

environments. Chapter Four describes the concrete differences in lifecourse expectations

27

with disability and where and how and if disabled South Aﬁ'icans are treated as their
able-bodied peers.

Contact with over ﬁfteen disability-related organizations in the Johannesburg and
Soweto areas during predissertation visits provided a solid sample of disabled people to
involve in this research. Organizers, members, and former members were approached for
interviews and 40 narratives were collected. Of the 40 participants, 17 are women and 23
are men. As for the ethnic or racial composition, the numbers can be related in several
ways. As the saying that will be repeated often in this dissertation goes, "South Africans
have multiple identities in common contexts, and common identities in multiple contexts"
(Thornton 19962150). One breakdown of the sample is that 24 participants are black, 13
are white, and three may be "other." The three in the "other" category are self-
descriptions. Another way to put it is in this South African way: 13 white, 27 non-white.

People with various disability types were approached, including d/Deafness,
blindness, mobility-related disabilities, and mental disabilities. Though I do not
particularly favor splitting the disabled by 'type,’ it is how people have been treated, as
discussed in depth in Chapter Two, and advocacy issues are largely spearheaded by
various organizations based on disability type. The Deaf and wheelchair users are often
loud organizers and the issues of other disabilities, especially mental disabilities, become
overlooked. People often have multiple types, such as the deafblindness or those with
cerebral palsy with speech and mobility related disabilities. Epilepsy and albinism are
also considered disabilities in South Africa. With albinism, although the pigmentation is

not a "medical" disability per se, vision and skin cancer are related concerns. Albinism

28

certainly exists as a cultural construct, a person with albinism is generally considered
"disabled." Nevertheless, the breakdown of participants is as follows.

Fifteen participants have mobility-related disabilities. Of these 15, six are female,
nine are male. They have varying ages of onset and mechanisms of injury, including car
crash injuries, sport injuries, shootings and stabbings, complications at birth, and polio.
Of the 15, two have cerebral palsy, but three participants in total have cerebral palsy.
Cerebral palsy could place them in a "men " category, but I favored their self-
descriptions regarding difficulty in accessibility. The two I categorize as having mobility
disabilities are also quadriplegic, while the other one identiﬁes her speech difﬁculties as
her primary disability. Rather than place the three in a medical typology according to
"cerebral palsy," I prefer to interpret their main concerns in terms of access. Participants
with mobility-related disabilities used wheelchairs or calipers and crutches.

Six participants are d/Deaf. This number also requires explanation. I say six
participants are d/Deaf because of that six, two are considered "culturally Deaf." I
capitalize the "D" in Deaf to differentiate between being deaf or having signiﬁcant
hearing loss and being culturally Deaf or the cultural experience of deafness.6 Cultural
Deafness relies less on auditory status because children of deaf adults (or CODAs), for
example, can be considered culturally Deaf. One participant who has worked extensively
with the deaf was not considered culturally Deaf by the other Deaf participants. She also

did not align herself in that manner. Of the four who are physically deaf, and claim that

 

6" Members of the deaf community and authors are not at all certain what that means and lack concrete
clariﬁcations in their communication and writing. Preston (1994: 13-14) writes: “For some, difference from
others is sufficient to merit cultural designation. Using difference as a criterion, however, bypasses an
important component of culture: those aspects which are shared within the group. Many writers have
emphasized the distinct language of deaf people. Yet equating language with culture overstates the
relationship and ultimately provides a circular deﬁnition of Deaf culture, ignoring the variations in sign
language ﬂuency and usage within the Deaf community. Other writers have become bogged down in the
issue of whether to describe the Deaf as a culture or a subculture.”

29

identity, and are therefore Deaf, two are female and two are male, three non-white, one
white. Their causes of deafness include meningitis, a mother having rubella during
pregnancy, other illnesses, and suspected sorcery. All were born deaf or became deaf by
the age of ten. Two interview methods were used with Deaf participants. My knowledge
of signed languages includes a working knowledge of American Sign Language and basic
South African Sign Language. In some cases interpreters were used while in other cases
total communication worked well.7 With participant observation and casual
conversation, sign language and total communication also worked well.

Of the eight blind participants, two are female and six are male, one is white. The
causes of blindness varied, some were born blind while others sustained gunshot wounds
or survived explosions that damaged the optic nerve. Braille copies of the informed
consent forms, audio tapes for those who are illiterate or could not read Braille, and a
contact card resembling a business card (with Braille overlay) were made available.

Two participants have epilepsy or are epileptic, and both are female.

Like the participant mentioned above who has cerebral palsy with good mobility
but speech complications, there are those who transcend categories. Another participant
is deafblind, and a third has learning disabilities but works in a ﬁeld of another disability
type and does not necessarily consider himself disabled.

The remaining six are able-bodied but have devoted much of their professional
and personal lives to disability. Two of these six are mothers who became advocates
when they had developmentally disabled children. One, as I mentioned, was bumped
from the Deaf category. Others are activists, usually parents, who represent those who

cannot represent themselves, (e.g., people with mental disabilities and children).

 

7 Total communication is a method that combines sign language, lip reading, and residual hearing.

30

Cognitive and developmental disabilities pose ethical dilemmas and methodological
challenges in any type of research. Edgerton (1993) and Angrosino (1992) have each
invested much of their careers in this greatly unexplored area. They have found new
ways of understanding the realities and experiences of people with difﬁculties in
expression and communication. Angrosino (1992) has found that the ethnographic
interview and narrative are qualitatively different with this population. The
anthropologist must not concentrate on what they say but on their abilities to create
culturally appropriate metaphors to convey their sense of identity (Angrosino 1992:172).
The question of informed consent, however, needs further clariﬁcation but the data from
these researchers aid in accounting for or exploring potential outcomes of the actions of
anthropologists. I chose to interview the people who spoke on their behalf as they are the
ones who mobilize others and participate in advocacy efforts. Those people generally
represented those with developmental disabilities such as autism and Down's syndrome.
Disabled or able-bodied participants had to have been active in disability related
organizations during some period of their lives. Organizations are important in this
research design for several reasons. First, knowing the history of organizations, if
organization membership and activity changed or is changing given the transition to
democracy is an important indication of wider social change. Second, participants
discussed their experiences with various organizations and highlighted tensions among
the disabled. Third, it is through organizations that the movement gained ground and
fought early battles. This is an important distinction because it locates tensions both
within the disability sector and movement efforts. A passage by Burdick (19952368)

clariﬁes this distinction:

31

Neglect by researchers of heterogeneity within targeted constituencies is
paralleled by an avoidance of differentiation among that part of the constituency
that is actually mobilized. This avoidance is clear in one of the chief current
sociological deﬁnition of a social movement as a collectivity of actors "sharing
the same beliefs and sense of belongingness."8
People, therefore, from various organizations were interviewed, as were people who have
left organizations. Pre-dissertation ﬁeld experience helped identify people and
organizations. Most participants referred me to people they thought would be good
participants for this project or mentioned people with whom they have cut ties, and those
people were also sought. Further, a range of organizations was approached based on the
population they serve, i.e., on disability type, to be more inclusive of various disabilities.
Forty narratives were collected. I understand narrative as research through
storytelling. In my use of the method, narratives are not limited to verbal storytelling.
Rather, storytelling includes, but is not limited to, ﬁeld notes, journals, oral history, and
observable behaviors. With rapport, asking, “what happened?” and following the themes
touched upon makes the meanings attached to events and experience more
understandable than interviews because participants would emphasize or shadow
contributing events to the narrative telling of their experiences. I feel my rapport with the
disabled was enhanced because I have adult onset hearing loss and learning disabilities.
My experience is suited to the project because it compensates for the unequal power
relationship between the disabled and the able-bodied (Stone and Priestley 1996:700;
Oliver 1992 and 1996). My rather large hearing aids mark me, and many people ask
what happened to me and this usually spurs the telling of their own disability experience.

My speech is very clear because my hearing loss is post-lingual (after the acquisition of

language skills) and I have some residual hearing. As part of participants' narratives, sit-

 

” Mario Diani, “The Concept of Social Movement,” in The Sociological Review (1992), pp. 2-23.

32

down interviews were audio taped and transcribed after leaving the ﬁeld using various
playback methods and ampliﬁcation technology to type the text of the interview. During
these interviews I asked participants about important life events. In this way the narrative
had some structure with regard to the lifecourse, but inevitably was interrupted for other
stories. I met with every participant at least once and interviews lasted one hour at the
minimum. Some interviews lasted more than three hours at one time, with short breaks.
I met with approximately twelve people more than once. Interviews were held in places
where the participant felt comfortable and was convenient for them. An enclosed room
was used for privacy in interviews with Deaf participants when signed languages were
used. Informed consent was obtained in an area where the participant felt comfortable to
ask questions. The informed consent form was put into accessible formats when needed.
The subjects’ rights to privacy will continue to be protected to the best of my abilities by
following prescribed anthropological methods according to the Principles of Professional
Responsibility adopted by the Council of the American Anthropological Association,
May 1971 (as amended through October 1990). The names of participants have been
changed in this dissertation.
LIMITATIONS AND CONTRIBUTIONS
Limitations

This study is limited to the experiences of activists. It is ﬁrrther limited to the
greater urban and township area in only one province. The rural context is not
investigated. Disabled South Africans still experience injustices, the worst of which is
abuse. There are incidents such as a 20-year old disabled man being hidden by relatives,

locked in a backroom of a house for four years (Malatji 2003); the l3-year old boy with

33

cerebral palsy with cigarette burns, knife gouges, needle marks, and rope marks around
his neck as a result of his parents trying to hang him (Cox 2002). This boy was also
punished with lock ups for entire weekends in outside squatter camp toilets without food
and had a steel pipe pushed up his anus (Cox 2002). There were hosts of other stories of
abuse in narratives from participants as well. The majority of disabled South Africans,
though, face high levels of exclusion based on gender, where disabled women are more
likely to be poor or destitute, malnourished, illiterate, and have a lesser chance of
founding a family than their able-bodied peers (South Africa 1997a24). More than 80
percent of black disabled children live in extreme poverty with poor access to appropriate
healthcare facilities and early childhood development opportunities (South Africa
1997a:5). People with severe intellectual or mental disabilities are often excluded from
development efforts, subject to abuse in institutions, and vulnerable in the justice system
because their testimonies are not taken seriously (South Africa 1997a:5-6). Elderly
disabled people, the rural disabled, disabled youth, disabled refugees, and people with
multiple disabilities are also identiﬁed in the White Paper on an Integrated National
Disability Strategy (INDS) as particularly susceptible to human rights violations and
neglect.

Activists have been able to change their lives through various means, but the
majority remains unmobilized. Those experiences are not explored in this dissertation,
but ideas about how their lives may have turned out or through the work they do serve as
indicators to the realities of other disabled South Africans. They, of course, have faced
discrimination. Examination of the life course was helpful in identifying some of the key

areas that reinforce their disability as exclusion. These are explored in Chapter Four and

34

involve accessibility in terms of employment, transportation, education, and the built
physical and social environment. 9
Contributions

This dissertation contributes to anthropology and disability studies. For
anthropology, it identiﬁes disability as a human rights issue, highlighting the fact that
disability is more than an individual tragedy. Rather, it is a status that is embedded and
shaped by larger political, economic, and social forces. The research demonstrates how
people with disabilities develop understanding and strategies to institute changes that
work in their collective interests. For medical anthropology, this research ﬁnds that the
disabled are often qualitatively different ﬁ'om those who are ill. Exploring the realities of
the disabled who do not feel they are ill reveals the inadequacies of traditional evaluation
methods where the lives of the disabled are viewed through diagnostic category. This
research contributes to disability studies by ﬁlling the void left by ethnographic ﬁeldwork
that tends to focus on North American and European contexts.

This research also serves as a record for disabled South Aﬁicans by reclaiming
their history. Because multiple disability types are included and the emphasis is not on
participants' treatment by authorities alone, disability as a political identity becomes a
unifying element, moving beyond the unique characteristics and needs of a disability type
that make up so much of the work and research on disability. This dissertation is another

account of the movement, but one where the disabled participated in its creation. In

 

9 For example, less than one percent of the disabled are employed — “People with disabilities
compromised [sic] less than one percent of South Africa’s workers sampled for the second annual
Commission for Employment Equity (CEE) report tabled yesterday” (Sowetan, April 23, 2003). “Besides
the fact that people with disabilities were poorly represented demographically at 0.9 percent in 2001, the
report noted that the data had been of a poor standard since very few employers managed to report on the
ﬂow of data, such as recruitment and termination of employment” (Sowetan, April 25, 2003).

35

another way this dissertation also ﬁlls a gap in South Africa's modern history. The
history of disabled South African's is signiﬁcant to ﬁrrther understanding of power,
coercion, domination, and hegemony in the workings of apartheid.
CHAPTER SUMMARIES

The three parts to this dissertation are intended to guide the reader through the
temporal and social changes in South Aﬁica. Part 11 contains Chapter Two and Chapter
Three. Chapter Two is a collection of critical histories of disabled people prior to 1980,
before disabled people organized more aggressively on their own behalf. The histories
are split by disability type given the way the disabled were treated, and in so doing the
apartheid imagination is highlighted. The created dependence of the disabled on the state
has a metaphorical link with bantustans (the former "homelands" or "reserves") and is
presented in the discussion. Against the backdrop of Chapter Two, Chapter Three
provides a chronology of the movement and a description of the historical moment that
ignited its major achievements. The chapter investigates the shift from self-help, as
characterized by the Self-Help Association of Paraplegics, Soweto (SHAP) and Disabled
People South Africa GDPSA), to a more rights-based philosophy. This shift occurred
only once the footholds of democracy were in place in the early 19905. Disabled people
and organizations had to participate in the country's transformation in order to elevate the
status of disabled people from one of charity to a rights-based inclusion of all citizens.
Individual organizations also had to change, and this transformation produced tensions
and factions that are characteristic of any movement. Chapter Three, therefore, covers
three time periods: the beginning of the movement in the 19805; the 19905 when the

movement was said to be at its strongest; and the current situation, after a decade of

36

democracy. In sum, Part I provides historical background to the treatment of the disabled
in South Africa (Chapter Two) and efforts made to change such treatment and gain more
accurate representation and appropriate resources (Chapter Three).

Part 11, Chapters Four, Five, and Six, present the situations of disabled activists
through the lifecourse, in everyday encounters, and in collective action. Through these
chapters an additional process is described: the various ways and the extent to which
disability is understood by participants as a politicized identity. Chapter Four
investigates personhood through the lifecourse. Participants' lifecourse and memories
and experiences bring forward the disabled subject. The injustices and questions of
personhood are highlighted and lead to a wider deﬁning of accessibility as equality
beyond just the provision of ramps and sign language interpreters. This is paired with
how people with disabilities articulate their treatment as objects when negotiating the
public arena and indicates rejection of able-bodied beliefs. This chapter also provides a
lengthy presentation of data on language. Language is highly politicized in South Aﬁica.
People can use several languages during the course of one day depending on where they
are and to whom they are speaking. Access to various places can be made easy or
difﬁcult based on language. Disability in the languages most frequently used by
participants is described, and illustrates how language functions in merging and dividing.
Some participants taught me the word abakhubazekile as a word that underscores
humanness with disability and as uniting to the movement. Abakhubazekile is an isiZulu
word black participants claim to have conjured that means "persons with disabilities."
This is signiﬁcant because it reappropriates the negative meanings of isiZulu words for

disability that mean people with disabilities are not human. At the same time, however,

37

not all participants are familiar with this word. In Chapter Five the age of disability onset
is further discussed after its brief introduction in Chapter Four by way of institutional
experiences in hospitals, rehabilitation facilities, and special schools. The actions or
practices and memories from the narratives are rich with complex and shifting
interpretations of disability acceptance. Processes of understanding disability and what it
means to individual participants are the thrust of this chapter. The concepts of shifting
selves and what this means to identity formation are introduced as it pertains to
understanding personal, political, and social change. Chapter Six extends the
examination of disability and identity by way of liberation philosophy. For some
participants disability is as integral to them as their gender and race. For others, their
disability identity shifts, is negotiated, or rejected.

Part III is Chapter Seven, the conclusion. Global disability rights efforts are
explained in terms of lessons learned from South Aﬁ'ica's labors and success. Future
directions are given that concern academic accountability with the inclusion of disability
into the identity politics arena. Plans to transform this dissertation into a movement

discussion document are also presented.

38

CHAPTER TWO

CORPOREAL BANTUSTAN S:
HISTORIES OF THE DISABLED IN SOUTH AFRICA BEFORE 1980

This chapter describes the context of disability prior to the 19805, before the
South African disability rights movement deﬁned its purpose and goals. The data come
from historical records and interviews and illustrate care for the disabled in the form of
institutions, sheltered and protected workshops, and segregated education. These
conditions still persist, but as the following chapters show, alternatives were created.
Rather than organize this chapter by special schools, institutions, adaptive technologies,
professional approaches and other areas of concentration, it is organized by disability
type. While various disabilities undeniably have different practical needs (for example,
accessible buildings, medications or therapies, or sign language interpreters), they are
only to a degree "medical." People with disabilities were, and to a large extent still are,
split into groups based on western medical categories and charity efforts targeting their
favorite " group." To a greater degree, personally and to social society, these needs are
accessibility based. In following chapters these histories help illustrate different
trajectories in the development of disability types, and how this was handled by the
movement. For this chapter, though, a parallel can be made with the metaphor of
bantustans and will be covered in the discussion. These histories concurrently identify
processes of relegating the disabled to the fringes of society and represent material to
include in a history of the movement or a reclaiming of history by the disabled and their
heritage.

CREATING DEPENDENCE: CHARITY AND WELFARE

39

Social and political intersections of nineteenth and early twentieth century South
Africa shaped the positioning of the disabled into disability types. ‘0 From these
intersections and forces vying for state control, something had to be done about the
disabled. Clergy from Europe, local authorities, well-to-do women with time on their
hands, people with medical training, and people wanting to "do something" for the
disabled began providing services and establishing places for their care. They effectively
carved a space separate from society to house or keep the disabled, occupying their time
with little hope for "rehabilitation." Often with various foci, these able-bodied people
navigated the political climate by harnessing scientiﬁc knowledge. Scientiﬁc racism
provided proof for the superiority of the "white race" and ﬂourished in the ﬁrst half of the
twentieth century. It was essential for the maintenance of apartheid through biological
determinism (Baldwin-Ragaven, de Gruchy, and London 1999:132). Disability was
embedded in this discourse. For example, in the nineteenth century, doctors' deﬁnitions
of insanity were close to social deﬁnitions, merely adding a diagnosis or label to the
belief (Deacon 2003:33), and black "lunatics" were thought less curable in the colony
than white "lunatics" (Deacon 2003222). Further, terms were applied based on race with
diagnoses following racial lines (Jones 2003).

Emphasis on various social impacts and estimated contributions of people with
disabilities traveled different routes. Given the data, though not comprehensive, different
interests were developed, it seems, based on the contributions people with disabilities
could make or, at the very least, be humbly allowed to exist. Since historical documents

mostly concern white welfare, blacks were left largely to develop separately according to

 

‘° The ﬁrst Dutch settlers anived in Cape Town in 1652. In 1806 the British occupied the Cape, an
incursion that lead to the Anglo-Boer War (1899-1902). The Union of South Africa came into being on
May 31, 1910 with four colonies: Cape, Natal, the South African Republic, and the Orange Free State.

40

the period and stage of apartheid legislation. Ethnographies were consulted, but they
were largely fruitless because anthropologists either did not see the disabled, excluded
them from participation, or the disabled were not there. For the deaf, education records
are available and demonstrate how the ﬁeld of education gauged the intelligence and
potentials of the deaf. For mobility-related disabilities, war, epidemics, and injury
somehow meant that the minds of those so affected were still intact. However, the
question of economic contributions loomed, and competition for labor was already high
between British, Afrikaner, and African workers. The blind, like those with mobility
disabilities, also perhaps had good intelligence, but could they ﬁll an occupational niche?
Mental disabilities have multiple issues that impinge on stability of performance based on
capacity, yet can pose a public threat. Fractured not only by perceptions of helplessness
by the able-bodied, the disabled were subject to existing fault lines as well. The
following histories are a more in-depth description of these states of disability.
Deafness

Much of what is known about d/Deaf history in South Africa is through the
establishment of schools for the deaf. This is not limiting because several issues have
their genesis in deaf schools and continue to this day. Education for the deaf has always
been controversial because it surrounds issues of language and comprehension.
Descriptive names such as "deaf and dumb" and "mute" demonstrate the level of
subjugation initiated by the hearing and make the deaf charity objects by questioning
their intelligence. Earlier pedagogies questioned whether the deaf could learn or have
meaningful and abstract thoughts without spoken language. Two approaches addressing

the development, quality of life, and education of deaf people competed during the late

41

18005: oralism and manual or sign language. The oralist approach seeks to utilize
residual hearing the deaf person may have to capture sounds, and together with reading
mouth or palatal formations, the deaf person makes guesses as to the spoken words or
phrases (known as lip reading or speech reading). One could argue that oralism aims to
make the deaf appear hearing, and therefore, more intelligent. Conversely, sign
language, now understood as a natural language with its own syntax and grammar, was
perceived as primitive, basic, and incapable of conveying complex concepts. This debate
of oralism — sign language still exists and other models have been implemented since.
One of many factors shaping deaf education in South Africa came from
international decision. The Milan Conference of 1880 was a gathering of hearing
educators for the deaf and effectively banned sign language as a medium of instruction
for the deaf. The German oral method was authorized as the ofﬁcial method for
educating the deaf. Two countries, the United States and Britain, opposed this
convention. According to Lang (2003:9-20), educators supporting sign language were
unable to attend the conference and the deaf were excluded from the vote (Lane
19842394). The oralism—sign language debate is made more complex in South Aﬁica by
religion and nationalism. From the establishment of the Union of South Africa in 1910
until 1948 with the election of the National Party, white schools were under provincial
control (Saunders and Southey 2001 :67), but blacks and whites were educated in schools
founded by missionary societies with a curriculum of vocational and manual training.
After British occupation of the Cape, teachers were recruited from England and Scotland,
and in 1939 a Department of Education was established (Saunders and Southey 2001267).

Mission schools and smaller farm and community schools were entitled to state subsidies

42

under certain conditions (Saunders and Southey 2001267). Private schools based on
religious principle were permitted as well.

The educational system parallels the general British ﬁamework of education, and
is evident in the development of schools for the deaf in South Africa. Irish Roman
Catholic sisters opened the ﬁrst school for the deaf in 1863 in Cape Town (Jones
19942698; Morgans 1999:53; Penn 1992:281). This was the Dominican School and was
later renamed the Grimley School for the Deaf and Dumb in 1874 (Simmons 1994:80).
Mother Prioress, who came from St. Mary's Institute for Female Deaf at Cabra in Dublin,
Ireland, initiated the school (Haycock 19362134). A5 for the medium of instruction, the
nuns introduced Irish Sign Language (ISL), thereby making this school the ﬁrst for
English-medium of instruction for deaf children (Simmons 1994:80). German nuns soon
followed, opening a school in King William's Town in the Eastern Cape (Simmons
1994:81; Penn 1992:281).ll The German sisters generally followed an oralist method,
but sign language was permitted and was based on British Sign Language (BSL)
(Simmons 1994:81). People within the Dutch Reformed Church, however, were
conﬂicted about whether to send their deaf family members to Holland for education, or,
to their dislike, to the Catholic Dominican School in Cape Town Van Reenen 1956).
These concerns were brought to the local leaders of the Dutch Reformed Church.
Therefore, in 1881 the De La Bat school opened in Worcester for white deaf children of
an Afrikaans background (Penn 1992:280-281). Afrikaans was the language of
instruction with English taught as a second language (Penn 1992:280). The British two-
handed alphabet was used along with signs that developed in that deaf community and

became known as the Worcester Sign System (Penn 19922280). Another Afrikaans-

 

” Simmons (1994) states that the school opened in 1884 while Penn (1992) cites 1877.

43

medium school did not open until the mid-19505.12 Tensions between the Roman
Catholic Church and the Dutch Reformed Church, and English and Afrikaans languages
were felt throughout in the Cape. The opening of the Worcester school reﬂects these
tensions and is an example of the move toward Christian National Education developed
in the 18805 based on Calvinism and Afrikaner nationalism (Saunders and Southey
2001 :67).
Though these schools are "officially" oralist, the German sisters in King William's
Town used signs based on BSL. What needs to be emphasized is that sign languages are
natural languages for the deaf. Regardless of teachers who refuse or who can not sign,
deaf children in deaf schools often sign in areas out of reach of authority. Another
example of clashes with sign language and oralism is that of the Worcester school. When
the school started at Worcester, the founder, de la Bat, intended to teach deaf children in
the oralist tradition but abandoned it for fmgerspelling and signs (Van Reenen 1956:7). '3
The school outlined the dangers of sign language in the development of the deaf:
This later method [signing], however, has three serious drawbacks, although it is
perhaps at the outset easier to master. Firstly it tends to make a deaf person
conspicuous, something of a curiosity, among a group of hearing people, and thus
underlines the fact that he is different and emphasizes his loneliness.
Furthermore, there must of necessity always be people unfamiliar with ﬁnger
spelling who, therefore, can understand him no better than he can them. Finally,
perhaps the gravest objection of all, the linguistic ability of the deaf who avail
themselves of this method must always remain extremely primitive. They will
speak and consequently write as they express themselves by this method — in

crude, rough-hewn language units. Man sit chair. This is language with little
grammar and no subtlety. [Van Reenen 1956:7]

 

'2 Van Reenen (1956) states the Transoranje School in Pretoria opened in 1955 while Penn (1992:280-281)
cites 1954.

‘3 F ingerspelling is the use of a manual alphabet, using the ﬁngers to represent letters. It is often used for
prOper names and for clariﬁcation in deaf communication.

44

The persuasive arguments in this passage are presented as linguistic fact. In Worcester's
professional opinion, it is the deaf person who must adapt to appear hearing, and
therefore, intelligent. Equating the deaf to a lower form of human further obj ectiﬁes
them, making their management necessary for not only for the betterment of the deaf, but
for the betterment of society.

Old de lat Bat retired in 1927 (Van Reenen 1956: 15). D. F. Malan, then Minister
of Education, and his secretary urged Gawie de la Bat to succeed his father (Van Reenen
1956:15).l4 The Rev. G. de la Bat, son of the founder, became principal of the Worcester
School for the Deaf and published a book in 1930 titled The Deaf Child in the Home in
which he provides guidelines for parents of deaf children. Under the topic "If The Child

Uses Signs," de la Bat suggests:

When a deaf child, in trying to give expression to his thoughts, makes use of
mimicry (imitation), and of natural signs of his own invention, or if he points to a
person or a desired object, immediately make use of the opportunity to SPEAK
the corresponding word to the child as distinctly as possible, repeating it several
times. Make sure that the child is WATCHING your lips. [de la Bat 1930]

This seemed to help him in his own mission: banning sign language. Although going
against the measure of his father, Gawie de la Bat tried to implement oralism. It was,
however, a tough task. The following account of this attempt illustrates the inequality,
disdain, and paternalistic view of Worcester teachers and administration toward "them":

It was no use trying to reform the senior pupils. A start had to be made with the
new arrivals. But, sure enough, within a term they too had been "contaminated"
by the signs of the rest. The new method pupils would have to be housed and
taught quite separately from the others. This speeded up the intention of moving
the deaf away from the central block to the edge of the town. But for seven years
"Meneer" [Mister] had to shuttle to and fro by car between his talker and his
signers! In 193 7, however, the ﬁrst deaf mute conﬁrmation class was examined

 

“ Daniel Francois Malan became Prime Minister in 1948 serving until 1954. He was instrumental in
forming the Puriﬁed National Party.

45

viva voce like the rest, and to-day, ofﬁcially, signs are banned at the School.
[Van Reenen 1956:7]

Apartheid education policies separated the education of black and white deaf
South Africans. In 1948 educational policy was reformulated along apartheid lines, and
in the 19505 churches and missions were to give up control of education. In addition, the
Bantu Education Act of 1953 initiated separate and inferior state controlled education for
blacks (Saunders and Southey 2001267). Penn asserts that by 1948, with the
fragmentation of educational policy, manual communication was deemed acceptable for
black deaf students, but anti-signing policy forced white deaf students into oralism
(1992:281). Anti-signing sentiments were almost certainly evident in white schools for
the deaf, but it does not mean that teachers in schools for the black deaf knew or used
sign language as a medium of instruction. Further, as the Worcester example
demonstrates, sign languages are often learned through peers. Some participants,
however, observed that despite formal oppression through apartheid legislation, sign
language in black deaf communities developed a richness and complexity that may have
been hampered among the white deaf communities.

To buttress this argument, there is great language movement during this time.
Moving north out of the Cape toward Johannesburg in the early 19005, a private school
was begun by British-born teacher Miss Jessica Davis (Simmons 1994:81). Dominican
sisters established a convent and school called St. Vincent's School for the Deaf and
joined Miss Davis' school in 1934 (Simmons 1994281; Penn 1992:281; Steinberg
1998:61). St. Vincent's may have been started by the school in King William's Town
because this school developed the St. Vincent Sign System that relied heavily on BSL

(Simmons 1994:81). Race and sign language intersect again because prior to 1937 both

46

white and non-white (meaning "colored" and Indian) deaf students were accommodated
at the Grimley School (Simmons 1994:80). Because the state introduced compulsory
education for all disabled children of European descent in 1937 (Simmons 1994:80),
these students were moved in 1937 to Wittebome with their ISL having been learned and
used at Grimley (Simmons 1994:80). The "colored" deaf community in Cape Town uses
this Wittebome Sign Language, which also is sometimes observed in the white deaf
community in the Cape Peninsula (Simmons 1994;80).’5 Indian and other Asian deaf
children attended the schools in Worcester and Wittebome, but the ﬁrst school for Indian
deaf children opened in Durban in 1969 (Simmons 1994:81). Thus, sign languages saw
life in non-white areas and contributes to the diversity of South African Sign Language.
Blindness

Though data and records concerning blindness and blind people are scarce for
nineteenth-century South Aﬁica, the deaf and blind were taught under the same roof for a
brief period. 16 In the years shortly after Worcester was established in 1881 there was one
blind pupil, but in 1891 Worcester educated a deaf woman (Van Reenen 1956214).17 In
the early 19005, however, the Cape Secretary for Education recommended that Worcester
have separate facilities for the blind and the deaf for departmental purposes (Van Reenen
1956215). Now separate from the deaf, the blind at Worcester were given training in

various trades. Sheltered work for the disabled remains a dubious "tradition." A

 

'5 Penn states that the ﬁrst school for black deaf was established in 1941. She does not explicitly name the
school but notes that it used the Paget German coding system (1992:281) which is not a sign language or
natural language for the deaf.

‘6 One reference is David Livingstone who noted in his 1859 diary that trachoma in southern Africa had
been recognized for many years (Malan 1988:343).

'7 Worcester-'5 jubilee publication describes: "During the ﬁrst ten years no blind pupils arrived, not counting
Daniel Simonis of Goudini, who came soon after the school opened but had 'neither the inclination nor the
courage' - and in fact not the mental ability - to stay longer than three months. But in 1891 came the ﬁrst
real blind pupil, lssie Schoeman, daughter of oom Jurie Schoeman, the Oudtshoom member of the
Legislative Council" (Van Reenen 1956:14).

47

distinction can be made here between sheltered work, protective work, and service
products. Sheltered workshops are designed for the more able disabled who can make a
product. These workshops pay a higher subsidy than protective workshops that are for
the more severely disabled, (i.e., mental disabilities and multiple disabilities). Protective
workshops essentially look after people rather than provide them with a livelihood or
sense of well-being from work. Service products, are known as workshops run by the
state, and are the worst in terms of morale and pay.

The work of Rev. Dr. Arthur W. Blaxall (1891—1970) proved to be a bit of a thorn
in the sides of at least two established orders: the charity ethos and racism. Blaxall came
from London and stayed in South Africa for over forty years. He was instrumental in
establishing the South African National Council for the Blind (SANCB), serving as its
chair until 1952 when he was appointed a vice-president for life (New Beacon 1971); he
also was the ﬁrst chair of the South African National Council for the Deaf (SAN CD).18
Both organizations were founded in 1929. Blaxall and his wife, Florence, recognized the
issues at hand: growing racist authority and its impacts on the disabled. He established
two organizations for blind non-European South Africans, the Athlone School for
Colored Blind in Cape Town and the Transvaal Society for the Care of Non-European
Blind, with its center at Ezenzeleni (the place where you care for yourself) in 1937
(Blaxall 1965232-43; New Beacon 1971). Florence, his wife, attempted to teach
deafblind people. Arthur Blaxall was not necessarily following the racist paradigm by

establishing separate facilities, and he thus was watched by the state. Blaxall was

 

‘3 The South African National Council for the Deaf was founded as an umbrella organization, indicating
that other organizations for the deaf were in existence. This organization was controlled by hearing white
people until the early 19905, when there was a shift toward control by the deaf. The organization has also
changed its name to the Deaf Federation of South Africa (DEAF SA).

48

charged under the Suppression of Communism Act and tried in Johannesburg in 1963,
but he left South Africa with Florence to retire in England a few months after the trial
(New Beacon 1971). Nevertheless, the Blaxall's legacy remained, and the disabled had
some exposure to the politics of disability.

This was especially true for non-whites. For example, some older participants
remark that the school in Cape Town was indeed for coloreds only, but they attended that
school because "Dr. Blaxall broke the rule and admitted blacks because they had nowhere
to go." Once out of school, however, there were no jobs for blind people, let alone black
blind people. Nevertheless, Ezenzeleni did have a sheltered workshop and some of the
graduates from Athlone went to Ezenzeleni as adults. While at Ezenzeleni they learned
knitting, basket weaving, cane work, and other crafts and skills thought suitable for the
blind. White blind people by that time were ﬁnding work as switchboard operators and
Ezenzeleni "quietly" also embarked on teaching the skills necessary for employment as a
switchboard operator. One participant remembers: "What used to happen is that when
they had new avenues for white people then we would take over where they left off."
Two participants and some of their classmates with secondary or high school education
traveled from Cape Town to the J oharmesburg and Soweto areas to become switchboard
operators. The older participants recall talking about the problems of suppression and the
noninvolvement of the blind into solving blind problems. They did not collectively act
on these obvious problems until the early 19705.

These participants formed a group in Soweto, growing to form the Transvaal
Association for Blind Black Adults (TABBA). They wanted projects that were oriented

to self-help. They recognized that the traditional plans "for the blind" only served to

49

occupy the time of blind people, often manufacturing products for the state. Their voice
as blind people was ignored, as specialists believed they knew what was best for their
development. TABBA consulted the South Aﬁican Blind Workers Organization in
Johannesburg but was told that blind organizations must affiliate with the SAN CB.19 By
this time Consolidated Circular No. 29 of 1966 called for the SANCB to segregate by
population group. In accordance, the SANCB had white services, an Indian division, a
colored division, and black people had a committee of black blind which some of the
participants served. The plan was that each division would become separate and self-
governing.

TABBA met on November 12, 1973 to deﬁne their mission. They decided that
they needed to do some research, to obtain some proof of the needs of black blind people
in the township. They went to pay points where people received their pensions to look
for blind people. They also used the radio and other media to connect with blind people.
By 1974 they began to apply to the SAN CB for affiliation but were rejected many times.
They believe the SAN CB responded by saying they already provided services and there
was nothing they could not provide. It was also rumored that perhaps the SAN CB
thought this group was formed by dissidents to discredit their work. The group, however,
was formed because the SANCB did not reach them. There were no black staff in the
townships and the efforts of SAN CB did not develop them.

TABBA worked out of a member's home, presenting their research in search of
support, visiting workshops and schools around the country to conduct further surveys,

and spreading their message. As one participant explained, TABBA was "quietly

 

'9 The South African Blind Workers Organization was established in 1946 and was mainly a white
organization until they opened their doors to all "races" in 1992.

50

conscientizing the people in charge [of workshops and schools] there you know.
Whether they are aware of the exploitation that is taking place, and that there was no
progress."
Mobility-Related Disabilities

Mobility disabilities can present a different set of circumstances for the state to
contend with than do other disabilities. Conﬂict, war, epidemics, and occupational injury
from mine work have a louder political element than other disabilities, though the
outcome of such events can also produce deafness, blindness, and mental disability. For
example, closed head trauma, or blindness or deafness from buckshot occurs from such
events. The critical differences generally lie in the mechanism of injury — giving life and
limb in conﬂict, for example, or important economic efforts, as in mine work, is
accompanied by general emphasis on state responsibility for the welfare of the injured.
What the state does to support its disabled veterans involves public scrutiny, whereas
other disabilities appear more neutral as to causation, its nature, and assessment of needs.
In this latter instance "special" can be read as "segregated," whereas the former involves
the best interests of the state in its decisions to enter war. Similarly, where commerce
and labor, colonial and imperial interests intersect, state interests must be preserved.

South Africa's long history of diamond and gold mining provided its massive state
revenue in the late 18905 and early 19005. Gold, in particular, sparked the Anglo-Boer
War (1899—1902), bringing the establishment of the Union of South Africa in 1910
(Saunders and Southey 2001 :79, 159).20 Essential to Britain, the gold indusz on the

Witwatersrand was under the governance of Paul Kruger, and both British imperialists

 

2° Historians have two general perspectives on the Anglo-Boer War: that it was fought for primarily
economic purposes or for Britain to protect its route to India (Saunders and Southey 20012159).

51

and mine-owners thought Kruger was unwilling to develop the mines (Saunders and
Southey 2001 : 159). To a certain extent industry must manage its workers who become
disabled, but the potential for injury is generally left to the worker as a gamble. The
Workmen's Compensation Act (Act 30 of 1941) transferred the cost from industry to the
State in the departments of welfare and health, and was largely ineffective in rural areas,
leaving rural families and communities to bear the burdens of disabilities and diseases
workers returning home incurred in urban workplaces (South Africa 1997b).
Compensation should have been the responsibility of the employers, according to the
White Paper for Social Welfare, General Notice 1108 of 1997. Another critical
difference is that mobility impairments from injury in the above scenarios occur after
one's social and economic endeavors are in place, unlike congenital disabilities.
Knowledge of their profession before injury is still intact, but whether these occupational
duties could still be performed was questioned. Beliefs about ability and plans to change
the political and economic machine of the workplace, and public acceptability are too
much for industry to handle given larger goals. Further, with sources of cheap and
replaceable labor (i.e., black males) injury simply meant replacing the damaged worker.

Perhaps the earliest example of the disabled being an economic drain in what was
to become South Africa was in the 16405. At that time, the hospital at Batavia cost the
Dutch East India Company ﬁrnds because it was "crowded with invalids, who often lie
there for months without doing any work, but withdrawing wages notwithstanding"
(Katzen 1969:189). The early records of mass disablement from the Anglo-Boer War
(1899 to 1902) involve what to do with disabled soldiers and prisoners of war. In

communications from the fort in Johannesburg to a Burgher camp in Natal, the Provost

52

Marshall writes of "a cripple": "This is a man with one leg and arm, a Quaker. He is
constantly causing unrest. Was a strong member of the Brocksma gang" (National
Archives of South Africa, "Mr. P. F. von Straten, A Cripple, Caused Unrest in
Johannesburg and Should Be Sent to a Refugee Camp", 1901). The response was to send
him to a Natal refugee camp because "We can hardly send such a cripple away as a
prisoner of war" (National Archives of South Africa, "Mr. P. F. von Straten, A Cripple,
Caused Unrest in Johannesburg and Should Be Sent to a Refugee Camp", 1901).
Because this "cripple" was a POW, a Quaker, and a member of the opposition, his status
as a disabled person afforded him a different measure of management.

Other wars would prompt organization to help disabled soldiers. Some recorded
efforts are the Lord Roberts' Memorial Fund for disabled soldiers and sailors
administered by the Soldiers' and Sailors' Help Society (National Archives of South
Africa, Lord Roberts Memorial Workshop). This society established workshops similar
to those for the blind and deaf. The 19205 saw disabled soldiers from World War I.
Cripple Care associations were born in the 19305 to help the disabled and were and, some
still argue, remain a charity organization.21 They started in the Cape to provide
rehabilitation, but new theories surrounding what to do with the disabled, people with
mobility disabilities in particular, were developing in Europe and America. Guthrie
(1961:308) explains that the object of rehabilitation is to cure or reduce disability so
people may return to work in the industry in which they are employed or, if that is not
reasonable, to enable them to ﬁnd alternative work in the same industry (N icoll
1941:501). These efforts, however, had to operate in an apartheid ﬁamework. The

following example illustrates one strategy. In 1955 the International Labor Organization

 

2‘ Cripple Care is now known as the Association for People with Physical Disabilities.

53

adopted recommendations to pursue vocational rehabilitation of the disabled with
attention to the following issues: training and placement of disabled people;
administrative organizations; cooperation between medical treatment and vocational
rehabilitation; locating more employment opportunities; sheltered work; and provisions
for disabled children and young people. The South Aﬁican government would not
conform to this as explained in a memorandum to the Governor—General of the ILO:
The principles contained in the Recommendation are acceptable and, in the main,
have been put into practice in the Union in respect of Europeans, but it has not yet
been found possible to extend the same facilities to all members of other races.
The Recommendation requires that vocational rehabilitation services should be
made available to all disabled persons and its acceptance would imply the
willingness of any government to take positive action to give full implementation
to its provisions.

Under existing circumstances there seems little likelihood that such action
in respect of all Non-Europeans will be taken in the near future, and it is
accordingly recommended that the Director-General of the International Labour
Organisation be advised that the laws in force in the Union cannot be said to be in
full conformity with the terms of the Recommendation and that at present action
to bring them into conformity is not contemplated. [National Archives of South

Africa, "ILO Recommendation (No 99) Concerning Vocational Rehabilition of
the Disabled, 1955"]

Shortly after this failure to comply with ILO recommendations throughout the Union, the
Department of Labor in 1957 started a pilot industrial rehabilitation center in
Johannesburg on an outpatient basis for men and women with less severe disabilities
(Guthrie 1961:308). They were provided with three months of treatment in the Sheltered
Employment Factory that included physical therapy and vocational counseling (Guthrie
1961 :308).

Although other workshops for injured workmen existed, such as the Workman's
Accident and Rehabilitation Center in Johannesburg, built in 1953 by the Rehabilitation

Association for Injured Workmen (Guthrie 1961:308), Welsh (1975:194) notes that

54

apartheid African hospitals, including institutions for the deaf and blind and old age
homes, had to be moved to the reserves with no new ones to be established in "white"
areas (Botha 1964217). Though medical treatment became the responsibility of the
provinces during the 19605, the central government became responsible once treatment
included rehabilitation or vocational training (McMurray 196122). Either way, black
disabled people were not eligible for such training as they were not considered citizens,
and primary health care on bantustans was nearly non-existent.
Mental Disabilities

Questioning the mental often means questioning the moral, be it 'race' or
disability. As mentioned above, various terms were applied based on race, and diagnoses
fell along racial lines (Jones 2003). While some authors discuss 'lunatics' (Terre Blanche
1999; Kruger 1980; Moyle 1987: Lea and Foster 1990211) and 'idiots' (Minde
1975a: 1716-1720), Deacon explains that nineteenth-century doctors' deﬁnitions of
insanity are close to social defrrritions, merely adding a diagnosis or label to the belief
(2003233). Most of the colonial 'insane' were cared for at home or in private boarding
houses, while asylurns were used to house the most desperate or most dangerous (Deacon
2003220, 22). An asylum provides a holding place and in the context of growing racism
in the colony, black 'lunatics' were thought less curable than whites (Deacon 2003 222).22
Delusions, however, characterized 'the insane' according to both doctors and lay people

(Deacon 2003234), and the content of the delusions reﬂected general social tensions. The

 

‘2 Lunatics' were at Robben Island in 1718 (Terre Blanche 1999; Kruger 1980) and 'idiots' were mentioned
during 1803 to 1806 (Minde 1975a21716-1720). A commission of inquiry in the Cape in 1852 investigated
'lunatics' cohabitating in the asylum on Robben Island (Lea and Foster 1990211). A classiﬁcatory system
seems to have been used because during this inquiry attempts at classifying 'lunatics' found a group of
female lunatics as 'the irnbeciles' and two 'idiotic' children (Lea and Foster 1990211). Lea and Foster
(1990211) say these women were exempt from hard labor and spent much of their time sewing (see also
Moyle 1987).

55

"Malay" (read Muslim) were perceived as a threat in Cape Town, and the white middle
class believed the 1882 smallpox epidemic was spread by Muslim burial practices
(Deacon 2003235). Trickery by the Malay was a theme found in the delusions of the
insane (Deacon 2003 :35). Thus, racist notions tended to color perceptions of mental
impairment.

As far as "care" for people with mental disabilities is concerned, the earliest
records are in the form of legislation in Natal and the Cape Colony. In 1868 Natal was
the ﬁrst area to make legal provision for the 'insane' or 'mentally unsound' by passing the
Custody of Lunatics Act (Lea and Foster 1990211). The Cape Colony followed with the
Lunacy Act No. 20 of 1879 (Lea and Foster 1990211). In June 1913, a Cape Town
society started providing for the protection and training of feebleminded persons (Minde
1975a21716-1720). Shortly thereafter the Mental Disorders Act No. 38 of 1916 provided
"for certiﬁcation, care and supervision of mental defectives and mentally disordered"
(Minde 1975a21716-1720). Changing the language a bit, the Mental Disorders Act of
1916 appointed a Commission of Mental Hygiene (Terre Blanche 1999; Minde 1975b)
and in 1920 the National Council for Mental Hygiene and for the Care of the Feeble-
Minded began (Terre Blanche 1999; Hurst and Lucas 1975; Vitus 1987). Mental
hygiene, however, can be read as racial hygiene (Swarts 1994) and is indicative of the
racial beliefs and tensions of the time. The Valkenberg Asylum was founded in 1891
(Terre Blanche 1999; Hurst and Lucas 1975) and was initially for whites only until a
"black side" was added in 1916 (Terre Blanche 1999; 1994). Mental institutions,

according to the Truth and Reconciliation Commission report (19982149), "did nothing to

56

foster mental health. Inmates were used as sources of income-producing labor and there
are (unproven) allegations that black patients were used as 'guinea pigs' in research."

Epilepsy is considered a disability in South Aﬁica and is usually categorized by
health authorities under mental disabilities. Scholars on mental health and medical
history do not typically include epilepsy in their research, perhaps treating epilepsy as a
special category or focusing on mental disability where epilepsy is only secondary. But
epilepsy in South Africa exists in an odd space in the early twentieth century, because a
distinction between 'sane' and otherwise uncontrollable epileptics meant separate
treatment. For this second type of epileptic, care was included in the Mental Disorders
Act (N o. 38 of 1916) and administered by the Department of the Interior. Plans for an
Epileptic Block and Cripples Home at the Lunatic Asylum in Pretoria were found in
documents dating to 1909 and 1910 with the Public Works Department in the Transvaal
and the Treasury (National Archives of South Africa, "Erection of Epileptic and Cripple
Home, Lunatic Asylum, Pretoria"). Most sane epileptics were probably cared for at
home, and the solution of what to do with them is similar to that of the deaf and blind:
send them to school.

The historical records show differences in approaches to sane epileptics. The
Secretary for Finance in 1936 communicated that not all epileptics require special
treatment in institutions or would they be prepared to accept it if provided (National
Archives of South Africa, "Special School for Epileptics at Kuils River Under Act 29 of
1928"). A proposal for a school for sane epileptic children by Mrs. Rev. J. P. Kriel of the
Parsonage involved much consultation with government departments, but communication

was exclusive to European children and made small estimates as to sane epileptic

57

children needing special education provision. Nonetheless, a representative for the Union
Department of Education notes:

I should point out that, generally, epileptic children should be required to attend
ordinary classes with normal children, unless their presence seriously disturbs the
ordinary education procedures, when they become candidates for special schools.
This happens when the ﬁts are of such intensity and frequency that they disturb
class teaching and exercise an undesirable psychological effect on the other
children. [National Archives of South Africa, "Special School for Epileptics at
Kuils River Under Act 29 of 1928]

The same ethos exists today.
Yet there is caution about assuming care. William Russell of the Ofﬁce of the
Commissioner for Mental Hygiene in 1936 explains in a letter that:
I am sure that there are in the community epileptics who are genuinely in need of
assistance and care, in a special institution or colony, apart from the mental
hospitals, but only some of the epileptics at present outside of institutions require
or would voluntarily accept this care. Although efforts to provide proper
treatment for those who really need it must naturally receive my support, I could
not approve of any movement which attempted to label all epileptics as a class
apart, and requiring special care and help from the State; such a policy would be
contrary to the interests of many epileptics themselves. . . . Also, I think we must
be careful not to launch any scheme which would place the epileptic at an
advantage over his normal fellows, by transforming a dread disease into an
economic asset. [National Archives of South Aﬁ'ica, "Special School for
Epileptics at Kuils River Under Act 29 of 1928]
Russell's department did assume responsibility for sane epileptics who are "unable,
because of their disease, to adjust satisfactorily to ordinary social situations, and who are
therefore in need of special assistance" (National Archives of South Africa, "Special
School for Epileptics at Kuils River Under Act 29 of 1928). The government's language
seems quite progressive for the 19305, but in letters requesting donations for the school,

Mrs. Rev. J. P. Kriel, the initiator of a school for sane epileptic children, uses language

that was perhaps more accurate of the general beliefs about epilepsy:

58

We are asking for help to make these bleak and empty lives fuller, richer and
more worth living. They are almost unwanted and avoided by most. Can we
form any idea of the effect upon them? Just the fact that they feel useless and in
the way makes them moody, restless, unhappy and retards or prevents any chance
that they may have of recovering. Their consciousness of their condition makes
them among the most lonely of people. [National Archives of South Africa,
"Special School for Epileptics at Kuils River Under Act 29 of 1928]

DISCUSSION:
CORPOREAL BANTUSTAN S

Bantustan policy was designed to maintain and strengthen white supremacy in
South Africa. Devised by Minister of Native Affairs (later Prime Minister) H. F.
Verwoerd and Secretary for Native Affairs Dr. W. M. Eiselen, the African reserves were
to be transformed into self-governing states, or bantustans. With the intention of having
the bantustans achieve full "independence," the policy was a token response to
international pressure on South Africa to give some political rights to Aﬁicans while
maintaining a master plan of apartheid. A series of acts implemented bantustan policy.
The Bantu Authorities Act of 1951 created a hierarchical system of authority in the
reserves where appointed chiefs and headmen played a key role. Territorial authorities
were set up for each of the so-called ethnic groups.23 Chiefs who did not cooperate in the
new system were deposed and replaced, while those who cooperated became clearly
identiﬁed as instruments of the state. The Promotion of Bantu Self-Govemment Act of
1959 recognized eight "national units" or "homelands" on ethnic grounds, providing for
self-govemment. An additional homeland in the Transvaal came later. Limited self-
govemment came for the largest homeland, the Transkei, in 1963. Beginning in 1976 the
bantustans were to transition from self—government to full "independence." An integral

part of apartheid, bantustan policy created a state without black or African South

 

2" The Xhosa posed a different situation and therefore had various authorities (Saunders and Southey
2001219).

59

Africans. Bantustans were recognized only by South Aﬁica and other independent
bantustans, receiving no international recognition. Africans essentially became
temporary residents of South Africa, subjected to pass laws, inﬂux controls, and forced
deportations. They were residents of the new states whether they lived in them or not.
The bantustans were, however, rural slums, totally dependent on South Africa.

Bantustan policy essentially questioned citizenship, divided by "type," and
depended on an illusion of "best-interest." The word "bantustan" remains pejorative.
Similarly, a corporeal bantustan as it relates to the disabled is not only in the physical
sense as in special schools and institutions or behind closed doors, but in a realm of
control reinforcing the inferior status of the disabled. Regardless of "race," many of the
disabled are cast into corporeal bantustans incorporating institutions, occupational niches
in workshops, or the protected environment of the home. Divided by disability type,
what is known as the individual model of disability (see Oliver 1983, 1990a, 1990b)
prevails in keeping them aside. Although labeled "special," the disabled are
"segregated." A general dichotomy, however, can be drawn from the above histories.
The white experience of disability is one of health and welfare with support from
organizations and the state. The lives of the disabled are run by the able—bodied,
professionals, and family members speaking who speak on their behalf and create the
conditions for their control through institutions. The disability experience of black South
Africans, however, is characterized by poverty, violence, and the system of apartheid.
Disability, however, remains bantustan.

Because the disabled are consistently considered as belonging to a social welfare

category [which has become the new term for "charity" (Coleridge 199624-6)], some

60

organizations of rehabilitation professionals and other specialists are created with the
seemingly wholehearted acceptance and desire for their help on the part of the disabled.
Thornton and Ramphele (1988232) ﬁnd that genuine representation of those affected is
overshadowed by the status of leaders (usually doctors, rehabilitation professionals, or
other health and welfare related workers) by virtue of their social visibility and
association with high education and economic status (Chambers 1983218). The decision-
making process lies with the able-bodied professionals rather than with the disabled.
This is consistent with what has been coined the individual model of disability. Oliver
makes a binary distinction between an individual model of disability and a social model
of disability (1983, 1990a). An individual model views disability as an individual
tragedy with psychological and medical aspects, but Oliver is cautious not to call the
individual model the medical model because in his view the medicalization of disability
is but one aspect or component of the individual model. I agree with this diagnosis.
Scholars in disability studies have equated the individual and medical models and
perhaps overstretched its boundaries. The success of the individual model is in creating a
population that is: dependent on the state; able to emotionally and ﬁnancially drain the
family; duped into believing that they need to be cured and are curable; and believed by
authorities to be uneducable and unemployable. The social model, conversely, views
society as creating and maintaining the inferior status of the disabled through its failure to
integrate and provide for the needs of the disabled. Blaxall's efforts, in the above section
on blindness, to somehow emancipate the blind from the bantustan of disability during
his tenure in South Aﬁica in the ﬁrst half of the last century is, I fear, one of the few

records of resistance to the racist and ableist ideology of the time. Blaxall recognized

61

what is now referred to as the social model of disability. As there were those who
rejected bantustan policy, there were those who rejected the individual model of
disability.

The next chapter concerns the clashes of the individual and social models in the
realm of the bantustan, corporeal and apartheid. The South African disability rights
movement is traced from the early days in Soweto during the 19805 to its current state.
Within the span of approximately twenty years, South Africa has experienced rapid social

change and disabled South Africans had to participate in these changes to elevate

disability as a social issue.

62

CHAPTER THREE

REDEFINING ENGAGEMENT: THE DISABLED ORGANIZE

The purpose of this chapter is twofold. First, it chronicles the South African
disability rights movement in context. Second, it highlights the importance of social and
political change in the potential for identity formation. The discussion is an analysis of
the movement in terms of an integrated approach to social movement research. New
social movement theory and resource mobilization theory approach social movements at
different but complementary levels of analysis (Canel 19972189; see also Cohen 1985),
and I will use Canel's (1997) assessment as an explanatory model. Such guidance
allowed me to see how meaning and identity could be mobilized, an essential component
germane to this study comprised of activists, but also seemingly lost by social suffering
theorists. Escobar (1992) and Burdick (1995) have called for a return to examining social
movements and to a rethinking and developing of aspects of political practice in
anthropological theory. Both recognize that, in the19805, anthropology focused on power
and everyday resistance, but that sociologists were actively developing social movement
theories. Meaning production is not lost on sociologists, and by using qualitative
methods such as narrative they are producing well-rounded assessments of social
movements [for examples see Zugman's (2003) work on Fuerza Unida and Gongaware's
(2003) work on Native American educational social movements]. Canel's model is
enhanced with attention to meaning production. This chapter, therefore, views social
movements as bringing about new social practices operating in part through the

constitution of spaces for the creation of meaning (Escobar 19922408).

63

As explained in Chapter One, the 19805 were a time of states of emergency and
unrest. The 1976 Soweto uprising was a result of schoolchildren protesting the use of
Afrikaans as a medium of instruction in schools. 2" This spurred riots throughout the
townships and lasted for months. The government's "total onslaught" was escalated and
ampliﬁed violence, widespread torture by security police, military occupation of the
V townships, mass detentions, mysterious deaths and disappearances of political activists,
and police immunity from prosecution for abuse. These efforts to suppress unrest forced
leaders in the liberation struggle to rethink their strategy because many of their fellow
leaders were either imprisoned or exiled from the 1976 uprising. The uprising
strengthened division in the National Party and Afrikaner community. While the uprising
caused some whites to call for reform, others believed a stricter reprimand was
appropriate to maintain white power. Nevertheless, the struggle during this time was
making it impossible for the government to maintain apartheid. It is against this
backdrop of intense conﬂict and impending change that disabled South African's began to
organize.

The South African disability rights movement began this transformation
essentially with the Self Help Association of Paraplegics of Soweto (SHAP) as an
income-generating project run for and by people with disabilities in the township. In so
doing, as with other social movements and collective action, "questions about daily life,
democracy, the state, and the redeﬁnition of political practice" (Escobar 19922408) were
recognized and people discovered their interrelations. This chapter covers three time

periods: (1) the beginnings of the South Aﬁican disability rights movement with SHAP,

 

2‘ The uprising began on 16 June and is now remembered as Youth Day. Evolved from Dutch and now one
of the eleven ofﬁcial languages, Afrikaans was the language of the government during apartheid and used
as an instrument of Afrikaner nationalism.

64

(2) the height of the movement, when participants describe it as at its strongest, through
the transformation to democracy in South Africa, and (3) the current state of the
movement.
LIVING CHANGE, CHANGING MEANING: 19805 SOWETO

SHAP was conceptualized by Friday Mavuso who gathered other disabled people
in Soweto to start an income-generating project. 25 Friday was a cult ﬁgure in the
township (OSDP/Howell) and possessed the street smarts and charisma necessary to
ensure the success of such an endeavor. The preliminary planning meetings included a
social worker with a sense of politics, but otherwise the participants were people mainly
from the township contacted from a list of paraplegics. They were conscious about
professional privilege, the efforts of well-meaning social workers, and others practicing
prescribed methods developed from a medical and charity ethos that had little application
in a place such as Soweto. Rehabilitation at the time had people lying in hospital beds for
sometimes years after injury. They knew they were not going to get jobs because of their
disability. Economic empowerment, therefore, became the critical component of SHAP's
ideology. Income generation was the primary goal and was not viewed as a rights
activity. SHAP was indeed working for the interests of economic and social
transformation.

Collective action is nourished through the daily production of alternative

frameworks of meaning, according to Melucci (19882248), "because conﬂict takes place

 

7’5 Friday Mandla Mavuso ( 1949-1995) was known in Soweto as a soccer player, a goalkeeper. He was shot
by an off-duty police ofﬁcer trying to settle a dispute, rendering Mavuso paraplegic. After six years at
Baragwanath Hospital and some failed business attempts selling ice cream and fruit, he gathered people to
form SHAP. I will refer to him as Friday because he is still referred to by ﬁrst name and 1 cannot see
myself calling him anything but "Friday." A majority of participants had stories to relate about Friday
touching their lives in positive ways and imparting that their disability should not deter them from
participating meaningfully in life.

65

principally on symbolic grounds, by challenging and upsetting the dominant codes upon
which social relationships are founded in high density informational systems" (cited in
Escobar 19922408). Escobar elaborates (Melucci 19882248) that "the mere existence of a
symbolic challenge is in itself a method of unmasking the dominant codes, a different
way of perceiving and narrring the world" (19922408). The perspective of SHAP
members at the time was that there is more pride of ownership with self-help, being more
of a cooperative than managed by a social worker or other able-bodied person in the
interest of charity or proﬁt. Sheltered workshops and protected workshops were
generally government funded. SHAP never took government money and promoted that
as a selling point. They were, as one participant says, "against the sheltered workshop
because the sheltered workshop didn't develop us." SHAPs plan was to build a factory
where people do not sit forever (and the less able-bodied involvement the better.) The
idea was to train people for six months and then place them in the open labor market.
They would tell people, "Be on your own, be independent. We will assist you, some
funding."

The "symbolic challenges" SHAP members found themselves in during the
organization's early days expanded the deﬁnition, impact, and effect of self-help. They
had practical needs, such as procuring and repairing wheelchairs, and solutions for living
with a disability. At this stage, "It was never like we are going to the street, ﬁght these
things, no, no, no." It was needs-based. However, as put by one SHAP member,

Before we formed DPSA, we wanted to show government that we needed -

because we were not manufacturing things there. We were contracted, by

companies. And in our own place, operating and ﬁxing things and then send them

back — to prove — given space, we can manage to do things on our own. That is
why — ideology around SHAP.

66

They were beginning to live a collectively deﬁned reality based on self-help that, because
it manipulated "symbols" of production and ability, began to transform their realities.

SHAP continued to challenge the structures that previously obj ectiﬁed or denied
the disabled proper service or representation and soon attracted disabled people from all
over the country. SHAP provided a useable model in the townships, where resources
were meager and tensions were high because of apartheid's policies of having such areas
"develop" on their own. New relationships were formed to accommodate the inﬂux of
people SHAP attracted. People coming from "homelands" and other areas would arrive
at the local police station in Soweto, looking for the man they saw on television. The
police then transported the newcomers to SHAP. A relationship with the Salvation Army
was fostered because the organization had an old-age home to accommodate people who
had come to SHAP but for whom was able to pay.

Others arriving at SHAP's doorstep were disabled youth, many of whom were
disabled during their high school years. People with disabilities have different
experiences with the education system, but there is a general trend of ignorance on the
part of schools about the ability and performance of people with disabilities. Rather than
having young people work at SHAP or go home to rural schools, SHAP would send them
to school, provide for them, and feed them. Two SHAP members were disabled during
high school and desperately wanted to ﬁnish. They attended adult education classes from
six o'clock to nine o'clock in the evening using Cripple Care transport. When school was
over sometimes the transport was late or did not come at all, forcing them to go to
people's homes nearby for safety and shelter. These people ended up forming a student

group at SHAP. The limited number of special schools in the township was one issue,

67

but this group did not want to attend special school. They wanted to be integrated, to
compete equally. They wanted to make the schools accessible.
I was doing the running around you know, to place students, the same students
from that group you know. We were doing peer counselling. Saturdays we
would go to [various areas] in the community, saw the people, counselled them
and said "Do you want to go back to school?" He says yes, give us the school
name, give us the principal, we go there, we ask for a meeting, and this person is
coming there. So we started demanding it. That’s how we started there. So we
placed a number of students.
The school's faculty, staff, and students would have been agreeable to lift the disabled
students in and out of the school building and classrooms and that happened, but SHAP
also built ramps in some of the schools. The schools acted out of sympathy, rather than
seeing accessible schools as 3 rights issue. Nevertheless, they pushed for their inclusion
and right to education.
Another need fulﬁlled by SHAP was taking people to Baragwanath Hospital.”5
Every Monday when SHAP employees and members requested, they were driven by the
service coordinator, also disabled, to the hospital. During these outings, the service
coordinator would teach them that they can ask the doctors questions about their
disability. The assistive devices available to blacks at the time were basic. Many
artiﬁcial limbs were fragile, yet heavy and bulky. SHAP took people to the orthopedic
workshop at Baragwanath on Thursdays, but also learned on their own how to repair
wheelchairs. In these ways, they were gaining a voice in their own care and learning
practical survival skills.

As SHAP began to grow, it inﬂuenced many organizations and became well

known. People would visit SHAP, wanting to know how it worked. With help from

 

2" Renamed Chris Hani Baragwanath Hospital in 1997, with 2,964 beds it is the largest acute hospital in the
world. It is the only public hospital serving approximately 3.5 million people in Soweto and provides half
of all the hospital services in southern Gauteng.

68

SHAP, similar self-help organizations formed, the strongest existing around Soweto.
This is important because of the nature of popular control in Soweto and the immediacy
of living in conﬂict. Such organizations are Zicabangeleni Self-Help Association of
Paraplegics which was founded in 1987 and was known as ZISHAP.27 Others include the
Tembisa Self-Help Association of the Disabled, the Alexandra Disability Movement,
SHADAX or the Self Help Association of the Disabled of Alexandra, and Itsoseng
Peoples Organization from Krugersdorp. Members of these and similar groups were
taught two key principles through workshops sponsored and conducted mainly through
people from SHAP: how to speak politically, and the functioning of organizational
structures. They learned they were organizations of disabled people conducting their own
affairs and all the new organizations wanted income-generating projects with factories.
Growth in the movement, which began to establish wider momentum around
disability issues, was the founding of Disabled People South Africa (DPSA) at the Fourth
Congress of People with Disabilities in 1984. Occupational therapists had been holding
congresses for rehabilitation professionals, individuals, and organizations for the disabled
to meet and discuss quality-of-life issues. It was at the 1984 congress that people from
SHAP, TABBA, and other disability organizations met with occupational therapists and
other medical professionals. This was quite a collection of experiences and perspectives
in one place. First, there were people with multiple disability types. Second, there were
black people and white people with disabilities. Third, there were professionals and able-

bodied people. This made for a matrix of representations. For many Africans it was also

 

27 ZISHAP is still in existence with the ofﬁcial name of Zicabangeleni Self-Help Association of People
with Disabilities. Still known as ZISHAP, it went through various names such as Zicabangeleni Self-Help
Association of Paraplegics, then Zicabangeleni Self-Help Association of the Physically Disabled, and to its
present name.

69

the ﬁrst time they ventured out of "their areas." "Quality-of-life" issues were put to the
side, however, when it was announced that DPSA would be an umbrella organization for
the self-help organizations with the objective of restoring dignity and empowering the
disabled through income-generating projects like SHAP. DPSA was housed at SHAP,
"in that 2020 structure." 28 They encouraged people to break away from organizations
such as Cripple Care and fostered the idea of independence from the state through
helping oneself.

As it expanded, SHAP leadership needed to ﬁgure out how to handle additional
sources of unequal, able-bodied dominated, and apartheid structures. They were
conscious of white privilege and professional dominance, and this awareness shaped how
SHAP organized. DPSA knew they would need representation, but a representation that
could work within larger frameworks dominated by apartheid. This meant having the
input of some white members. White disabled participants invited to DPSA leadership
understood that SHAP leaders had more experience and were the engine for the
movement, but also that their 'race' would provide something the black leaders could not
at the time. The white members of DPSA lent a public face and maneuvered white
dominated sectors, but felt comradeship based on a shared knowledge or experience of
repression as disabled, exploring these feelings more explicitly, together.

But at the same time there were inﬂuences from Zimbabwe and internationally
that touched DPSA. These developments helped to reﬁne DPSA to operate on a larger
scale. One such development was the outcome of the 14th Congress of Rehabilitation
International (R1) in Winnipeg, Canada. In 1980, this congress was attended by medical

professionals and activists. Dissension began to be felt in the mid-19705 among the

 

2" A 2020 is a prefabricated building for accommodation or storage.

70

Swedes, the Dutch, the Danes, and some British who felt that RI needed to be governed
by a larger proportion of people with disabilities, and these opinions and debates
continued into the 1980 conference (Groce 2002268). These groups were supported at the
congress by Canadian, Irish, and American organizations of people with disabilities
(Groce 2002268). "There was loud debate, backroom negotiations, an on-site newsletter
that was printed nightly by the activists and hushed discussions in the halls" (Groce
2002268). Some of the professionals believed that they knew what was best for disabled
people and argued that their detached perspective was valuable to the betterment of the
disabled (Groce 2002268). Others were deeply troubled that they could not see the
obvious problems or inequalities of the system they perpetuated (Groce 2002:68-69).
Still others were worried that their careers were in jeopardy (Groce 2002268-69). The
Swedish delegation at the congress proposed an amendment to RI's constitution, calling
for an immediate majority (at least 51 percent) of the voting delegates to be people with
disabilities (Groce 2002269). With some opposition, RI leadership agreed, but insisted
that the shift should be gradual as each representative's term ended (Groce 2002269). A
secret ballot voted down the amendment (Groce 2002269). This resulted in further
dissension and the birth of Disabled People's International (DPI), an organization that
would be run by people with disabilities. People who would be associated with SHAP
and DPSA attended the RI conference and returned to southern Africa inspired.

Further, the birth of DPI at the RI conference had a Zimbabwe connection when
Joshua Malinga became DPI's Chairman (Groce 2002269). The disabled in Zimbabwe
had started mobilizing before South Africa but had not achieved the mass movement that

those in South Africa would have. The disabled in Zimbabwe and South Africa teamed

71

together to raise consciousness and politicize disabled Africans throughout southern
Africa. The movements were effective in countries with a military-armed struggle (South
Africa, Zimbabwe, Zambia, Namibia, Mozambique). Many participants in the movement
agree that Zimbabwe added a new dimension by further politicizing the movement, yet
recognize that SHAP played an important part. DPSA's well-known slogan, "nothing
about us without us," coined by SHAP's founder Friday Mavuso, is echoed by disability
rights organizations internationally. Participants recall Friday saying, "If you want to talk
about disability, you must involve us." Professionals did not ask what people with
disabilities needed or how they could be assisted. One young participant says "They'd
just say for instance if you are disabled, even at homes you know, families speak to them,
they will buy you a sewing machine, as if he cannot speak for himself."

DPSA was in full operation, and the group adopted methods of operation
resembling other resistance movements of the time. The congresses of people with
disabilities became more lively and provided an opportunity to protest rather than debate
the pros and cons of speciﬁc catheters. At one such congress in Durban, there was a
protest against how government was handling disability grants. On a Friday during rush
hour they took to the streets and the riot police forced them to disperse (Rowland
20012electronic document). Memories of DPSA's regular meetings describe how

disability became translated, understood as political:

It was like, it was a time of real brotherhood-sisterhood, uh, of comradeship and
we of course addressed each other as "comrade." The chairman would be
"comrade Chair" or "corn Chair" and we spoke in, in, in a certain style of
speaking we would speak with "comrade." Not all the time, but a good deal of the
time. A lot of people confused that with supporting communism. The use of
"comrade" in Zimbabwe struggle in South Africa was a struggle, a struggle title of
respect of being together.

72

Indeed, identiﬁcation with the struggle would elevate DPSA as the mouthpiece of

the movement, really putting disability on the agenda of the coming government.
TRANSFORMATION: THE MOVEMENT AT ITS STRONGEST
Participants in Change: DPSA Steps Up

One participant estimates that at its strongest DPSA had 10,000 to 12,000
members. DPSA had established itself as the mouthpiece of the disability rights
movement and in the early 19905 was able to cast large advocacy campaigns. The early
19905 are characterized by violence and unrest on the doorstep to democracy, and thick
webs of politics had to be traversed. In 1991 various apartheid legislation was repealed,
namely the Native Lands Act, Separate Amenities Act, Group Areas Act, and Population
Registration Act. The Further Abolition of Racially-Based Measures Act removed racial
distinction in other laws. The National Peace Accord was signed by the AN C, the
government, the Inkatha Freedom Party (IFP), trade unions, and others in the same year.
By December, the Convention for a Democratic South Africa (CODESA), the negotiating
body to draw up a new constitution, met. 29 In 1992 the Record of Understanding
between the AN C and government broke a deadlock in negotiations, including the release
of more political prisoners.

A series of strategic involvement of DPSA on the behalf of all disabled South
Aﬁicans in this transformation ultimately won their rights. The years leading to free
elections in April 1994 were critical. Two developments in 1991 essentially began this

journey. The Disability Rights Unit of Lawyers for Human Rights and DPSA worked

 

29 CODESA ﬁrst met in December 1991, but with deadlocks on the number of votes needed to adopt the
new constitution, the NP wanting three-quarters of the vote and the ANC going no higher than 70 percent.
A second CODESA met in May 1992 in an effort to resolve this issue, but ended in disarray. A similar
negotiating body in 1993 was named the Multi-Party Negotiating Forum, not CODESA 3 as it was
perceived as a failure. See Saunders and Southey (2001:51-52) and Friedman (1993).

73

together on a charter of demands for disabled South Africans. They consulted disabled
people's organizations (DPOs), collecting input. The Disability Rights Charter of South
Africa was ﬁnalized and adopted by DPSA in December 1992. At the same time, people
with disabilities participated in CODESA.

DPSA had maintained itself as a non-aligned organization, but with the release of
Nelson Mandela from Robben Island and the legalization of the AN C and other
previously banned political parties in 1990, preliminary talks between the AN C and the
NP began, and DPSA reevaluated its stance on non-alignment. Although there had been
a few early SHAP members who were members of political organizations such as the
Azanian People's Organization (AZAPO), Friday and the majority of people at SHAP
were not affiliated with any organization or political party. 30 As DPSA grew from SHAP
and the township and wider into South Africa, however, afﬁliation may have proved
dangerous for staff in other areas. 3 1 By the early 19905, though, the ANC was
recognized as the government in waiting and DPSA leaders were also members of the
AN C.

In a more general sense there is a symbolic or ideological bond between DPSA
and the AN C.“2 It is at this time that DPSA identiﬁed itself with the larger struggle and
actively pursued engagement with the AN C. On March 24, 1993 the AN C and several of
its departments met with DPSA in Johannesburg to discuss issues affecting disabled

people (Mayibuye 1993222). At this meeting the Disability Rights Charter of South

 

3° AZAPO is the mass organization of the Black Consciousness Movement.

3' The political clash of the ANC, the National Party government, and the Inkatha Freedom Party in Natal is
one such example.
3’ See OSDP/Howell.

74

Africa was adopted by the AN C (Mayibuye 1993222). Also at this time, the AN C was
developing its Bill of Rights andm in a preliminary revised version, Article 9 states:

(1) There shall be no discrimination against disabled persons.

(2) Legislation shall provide for measures to promote the progressive opening

up of employment opportunities for disabled men and women, the removal of

obstacles to the enjoyment by them of public amenities and their integration into

all areas of life. [African National Congress 1993210]

There is a note to this article: "This addition is in line with recommendations by the
Disabled People of South Africa, which is actively promoting discussion amongst
disabled people on their future constitutional rights, and which points out that there are
nine million disabled people in our country" (African National Congress 1993210).

To reach all constituencies, DPSA held a summit in Johannesburg in 1994 for all
political organizations to ensure people with disabilities were in their political agendas
(OSDP/Howell). Because of poor response, especially by the ANC, DPSA approached
the AN C again to encourage a stronger engagement with disabled people. It was around
this time that people with disabilities were thinking of forming their own political party,
the Disability Front, after the disappointing outcome of the summit (OSDP/Howell). The
Disability Front did not emerge because people with disabilities already belonged to
various political parties and many DPSA members, who were voting for the ﬁrst time in
their lives, wanted to vote for the parties leading the liberation movement
(OSDP/Howell). In addition, the ANC, as a result of DPSA's persistence, proposed to
include at least two pe0ple with disabilities on its election list for the National Assembly
and deployment to parliament.

With the triumphant election of the AN C and in the process of demolishing

apartheid structures, disabled people became more active participants in the newly

75

inaugurated legitimate democratic government. People with disabilities are speciﬁcally
included in Chapter Two of the Bill of Rights to the 1996 Constitution of South Africa,
which is among the most liberal constitutions in the world. Another landmark in the
rights of disabled people was their inclusion in the new government's Reconstruction and
Development Program (RDP). A Gender Desk and Youth Desk were established within
this program, and a Disability Desk followed in 1995. When the RDP dissolved in 1996,
the Gender and Youth Desks remained as government programs, as did the Disability
Desk, in the Office of the Deputy Presidency. A Green Paper was drafted in 1995 on the
rights of the disabled as a guideline for disability's inclusion into all government
departments, and the need for a permanent ofﬁce to implement and monitor these
guidelines became the duty of the Disability Ofﬁce. 33 In November 1997 the Green
Paper was published as a White Paper on an Integrated National Disability Strategy
(INDS). The INDS is the culmination of an "extensive, consultative and participatory
policy formulation process" (South African Human Rights Commission 2002220). It is
premised on the 1996 Constitution of South Africa and largely informed by the United
Nations Standard Rules on the Equalization of Opportunities for People with Disabilities,
which were adopted by the UN General Assembly in 1993. The Disability Desk was
ofﬁcially established as the Ofﬁce on the Status of Disabled Persons (OSDP) on May 1,
1997 in the Deputy President's Ofﬁce, and in 1999 in the Office of the Presidency after
the second democratic elections. South Aﬁica also has a large number of disabled

Members of Parliament in comparison to other countries.

 

33 A Green Paper is a consultative document that offers opinions and poses questions to stimulate public

response and inform policy. It is not a government policy. After the Green Paper process, it can become
policy as a White Paper.

76

These landmarks essentially transformed South Aﬁica's individual model of
disability into a social model, integrating disability into government departments through
the INDS, the new Constitution squarely placing the disabled as citizens with equal rights
and better inclusion into new legislation where they had been previously neglected, and a
government ofﬁce in the Ofﬁce of the Presidency to monitor these new objectives.
Internationally, with the process towards the establishment of democracy in place, DPSA
became recognized as the national assembly of disabled South Africans and granted full
membership status in DPI (OSDP/Howell).34 This is important because DPI has Special
Consultative Status with the Economic and Social Council of the United Nations and is
well established in the international disability movement.

Is DPSA the movement?

While all participants agree that DPSA has been instrumental in putting people
with disabilities on the national agenda and the movement was at its strongest prior to
elections, for the most part, inevitably, the speciﬁc character of mobilization includes
some and excludes others (Fox and Starn 1997211). DPSA needed to exclude some
social workers and other "charity" workers based on professional paternalism; but they
also excluded other people with disabilities or kept them at arms length. Burdick
explains that current writings on social movements tend to assume that they are trying to
mobilize whole constituencies such as "women," "middle peasants," "cannery workers,"
and so on (19952366). The use of such language veils the fact that, in almost all cases,

the majority of people who belong to a movement's potential constituency remains

 

3‘ This is interesting because the European Economic Community announced its lifting of sanctions in
January 1993 and the UN lifted its sanctions, except for its arms and oil embargoes, in October 1993. DPI
was granted Special Consultative Status with the Economic and Social Council of the United Nations in
1981.

77

unmobilized (Burdick 19952367). While it is difﬁcult not to equate DPSA with the
disability rights movement, there is a vital difference. DPSA is an organization and as
either part of DPSA in name or participation, or, as separate and unafﬁliated with DPSA,
many new organizations emerged in South Africa during the 19805 and 19905, ﬁlling in
gaps left by DPSA. The actions of other DPOs are critical to understanding and
differentiating "the movement" and DPSA.

Large organizations based on disability type were generally for whites, as
explained in Chapter Two, but they also had to grapple with transformation. In 1981, the
South African National Council for the Blind (SANCB) decided to write race out of their
constitution, which was illegal at the time. By 1994 they decided to have their own
transformation evaluation to address remnants of racism in their organization. They now
have a national executive committee that is majority black, majority blind. This is not
surprising, because there were leaders in DPSA who were also afﬁliated with SAN CB.
Still, other organizations acted within an apartheid framework, creating a segregated
section for blacks. For example, the South Aﬁican National Epilepsy League opened
their ﬁrst workshop for colored people in 1983 and two for black people.35 There was,
however, resistance to apartheid in smaller ways and changes in the perception of people
with disabilities as less able to govern organizations. The South African National
Council for the Deaf began to include more deaf members on its executive committee in
1987 (Jones 19942689) and indicates a different kind of change. Before this time deaf

people were appointed only to subordinate committees (Jones 19942698). Until the 19905

 

3’ The South African National Epilepsy League was totally reorganized in 1982, after the death of its
national director in 1981. The organization changed from a national organization with decentralized
branches to one with a centralized national organization, but restructured again in 1987 with regional
branches. A second workshop for colored people was started in 1985, but closed in the late 19805 due to
ﬁnancial difﬁculty. They changed their name to Epilepsy South Africa in 2002.

78

the organization was controlled by hearing white people until the shift towards deaf
control. The situation of the deaf, however, remained the same: black deaf South
Africans were to sign in school while white deaf South Africans could not. By the 19905,
though, the South Aﬁ'ican National Council for the Deaf changed its name to the Deaf
Federation of South Africa (DEAF SA) and made a shift to actively promoting sign
language. Although a majority of the schools still held onto a tradition of oralism, St.
Vincent's in Johannesburg chose to defy apartheid policy by hiding black pupils in hostel
toilets when education authorities visited the school (Steinberg 1998:61). Through these
examples and in interviews people felt some kinship with the disability rights movement,
yet were not committed to that change or were kept at arms length by DPSA. This may
be because DPSA was perceived essentially as an ANC structure and there were those not
ready or willing to change.

Of course, there are factions in any movement. Those who did not change were
essentially tangents to DPSA. DPSA did represent some of the interests of other
disability types, but one critique echoed by many organizations is that DPSA remained
both for the black person and for those with mobility impairments. Many organizations
felt and still feel left out of DPSA purposefully and that their participation in the
movement is overlooked. Participants told me many examples of the tensions between
their organization and DPSA. Three examples are People for Awareness on Disability
Issues (PADI), Autism South Aﬁica, and the Disabled Children's Action Group
(DICAG). PADI started in 1987 with educational and life skills programs for children.
Founded and run by a woman with cerebral palsy, she had prior involvement with DPSA,

but her proposal for PADI was rejected by DPSA. PADI is still in existence and focuses

79

on employment equity training in the corporate sector and life skills training in rural
areas. Autism South Aﬁica was founded in 1989 by parents and professionals as a lobby
organization and has had difﬁculty with DPSA in getting autism-related issues on their
agenda. DICAG was set up in 1993 to promote the rights of black disabled children and
was part of DPSA, but branched off in 1997 due to DPSA's mismanagement.
CURRENT ASSESSMENTS: LOSS OF MOMENTUM

The consensus is that currently the movement has lost momentum. Although the
movement achieved many of its goals, participants believe that these goals have not been
maintained. Participants had a variety of reasons for this loss in momentum: a leadership
style that was insufﬁciently active, or a weak leadership, or the organization lost its main
activists to government positions without proper replacement, or many leaders died.
Some even said the movement has lost its spirit or that current problems are based on
apartheid hangovers on a personal level, or that individuals are caught up in "empire
building." The most frequent assessment of the movement is that it is fragmented, and
that organizations do not communicate with each other to establish a common agenda.
As for what the movements needs, participants identiﬁed the following: leadership in
order to institutionalize concepts, work together to common goals, refocusing and
advocacy, input to the development puzzle, pursue political advancement and self-
representation. Some understand that although there are fragments based on disability
type and tensions with organizations and DPSA, the best way forward may be for DPOs
to focus on what they do best.

Participants also shared various memories and current experiences about DPSA.

They generally believe that DPSA was good for the speciﬁc moment when it was part of

80

the wider liberation struggle. But as for their opinions on DPSA now, they unanimously
say it is not a cross-disability organization. Although another umbrella organization, the
South African Federal Council, was established to include all DPOs to act as a liaison to
government, some believed that OSDP only recognizes DPSA. Whether this is the case
or not, that is a belief. In addition, organization leaders feel DPSA does not work for
them. Some participants were called negative or were edged out of discussion for
bringing certain debates to the table.

There are organizations, old and new, that are not formal members as such, yet
work closely with DPSA (such as Epilepsy South Africa and Deafblind South Aﬁica).
There are those that receive no communication (Quadriplegic Association of South
Africa), or have no formal afﬁliation (for example, DEAFSA, the Miss Conﬁdence
pageant, and PADI). DPSA enjoys a reputation of having mobilized people during the
19805 and early 19905, but people are not able to explain what DPSA does now. DPSA
worked politically while other DPOS struggled to see how they would ﬁt in after change.
Other organizations that speak of the movement wanted change, but were not motivators
for change. The movement was led by DPSA. This is not to say that after 1994 DPOs
did not become active in pursuing goals within the new framework. They were ignited
and became better at pinpointng the departments responsible for their respective issues.
Many people have left DPSA and other DPOs because of disability politics. Their
reasons for leaving include DPSA not providing a secured contract for their employment,
that their chosen organization no long provides a real service, or the new leadership does
not account for their input. Participants also explained their devotion has contributed

enough and they now must spend time with their families and develop other interests.

81

For all of these reasons, OSDP called a legotla (gathering) in 2001 to refocus the
movement. Position papers on transport, education, economic empowerment, social
security, and access to justice were prepared (OSDP/Howell). OSDP has the tremendous
job of trying to put itself out of business by implementing disability into all government
departments. It is an ambitious model and will take time. A recent assessment of
whether government departments are integrating disability is bleak. Eighty-three percent
of government departments do not have disability policies and those that were found to
integrate or include the disabled were not translatable to strategies or programs that seek
to integrate the disabled into society (Research Dynamics South Aﬁica and Office on the
Status of Disabled Persons 20002vi). This lack of integration is an identiﬁed problem in
the disability sector and movement.

Self-Help?

In the early 19805 and up to the rise of DPSA, self-help associations were a
development activity to emancipate the disabled in the townships. They relied on donor
support and procuring work contracts for sustainability. "It's a wrong philosophy now. It
was okay in the apartheid days, but it doesn't work now. Consciousness-raising is not an
issue for them. Those who were encouraged by Friday, that was along time ago." SHAP
now resembles the very structure it was against: sheltered work. There were various
changes in leadership, but generally contracts to assemble or make various products came
from a white company that employed SHAP. Many people with SHAP's best interest in
mind have proposed changes without success. Some have given them models to phase
out the party who obtains contracts for SHAP because SHAP could do it on their own

now. This has provided reason for people associated with SHAP to leave, and they have.

82

SHAP has a reputation for the workers owning a part of the factory, but in reality it is in

the form of the workers promoting whom they want as a chairperson. For the past two

years, they have been enjoying a chairperson they chose and trust, but he faces

difﬁculties in implementing change with the board of directors. He, too, is disabled and

realizes the problems.
The problem, it’s, what I’ve experienced you know, the eleven months I have,
it’s, you know people out there are exploiting people with disability. Because
people with disability here has this mentality of you know uh thinking that we are
doing them a favor, they don’t deserve what they are working for. Like with me
here there are so many guys that didn’t want to form partnership with them
because of what they wanted to give me you know. What they wanted to give me,
they were going to exploit this organization you know. They were going to make
money out of this organization. At the end of the day they are the ones who are
beneﬁting and the organization does not get a thing. So why should I go and sign
a contract like that? You know.

SHAP currently has 400 people on its waiting list for training.

DISCUSSION:
PRACTICE BETWEEN CONDITION AND ACTION

New social movement theory (N SM) and resource mobilization theory (RM) seek
to explain the emergence and signiﬁcance of contemporary social movements in post-
industrial societies (Canel 19972189). Both NSM theorists and RM theorists reject
traditional theories that explained collective action with reference to structural
dislocations, economic crisis, and exploitation (Canel 19972190). These traditional
theories assumed that collective action in reversing such a condition was a simple, direct,
and unmediated process (Canel 19972190). NSM theorists and RM theorists agree that
the process of condition to action is discursive and mediated, but each theory identiﬁes
different conditions in this process. According to NSM theory, new actors are not class

actors because they are not ﬁghting traditional working-class struggles and their identity

83

is not constituted by their place in production (Canel 19972190). NSM theory critiques
Marxism's inability to understand new conﬂicts in modern society (Canel 19972190).
Marxism would postulate that economic logic provides unity for social transformation
(Canel‘19972189-190). While NSM theory developed in Europe, RM theory developed
in North America in response to Durkheim's view that collective action is "anomic and
irrational behavior resulting from rapid social change" (Canel 19972189). RM theorists
also question collective behavior theory for its functional basis emphasizing integration
(Canel 19972191). "RM theory proposed that the passage from condition to action was
contingent upon the availability of resources and changes in the opportunities for
collective action (Tilly 1978299)" (Canel 19972191).

NSM theorists emphasize discontinuity when comparing new movements with
traditional struggles and collective actors (Canel 19972198). New actors emerge because
of a growing intervention of steering mechanisms in the regulation of economic and
social life (Canel 19972202). A supposed lack. of material concerns encourages pursuit of
personal and collective identity (Zugman 20032173). Identity, then, is constituted at the
intersection of state and civil society (Canel 1997:202). NSM researchers focus on macro
levels of analyses to understand identity, but this comes at the expense of understanding
group decision-making and mobilization (Canel 1997:202). Conversely, RM theorists
focus on the continuity or relationship between the movement and the political system
(Canel 19972213). Affluence, prosperity, and growth of the welfare state contribute to
social movement activity in this perspective (Canel 19972206). RM focuses on the
political nature of new movements because they are conﬂicts over the allocation of goods

in the political market (Canel 19972190). Mobilization, according to RM, is "the process

84

by which a group assembles resources (material and/or non-material) and places them
under collective control for the explicit purpose of pursing the group's interests through
collective action" (Canel 19972207). RM, therefore, is more concerned with micro
processes. In sum, the two theories can be characterized as follows: NSM theory
addresses the "why" of social movement activity (struggle for meaning production,
communicative action), where RM targets the "how" of social movements (strategies,
decisions, resources, social networks). Social movements, however, possess aspects of
both continuity and discontinuity. Canel suggests a more eclectic approach to the two
paradigms. Such an integrated approach must account for the "structural constraints and
the range of possibilities available to social movements, but it must also examine how the
actors interact with their environment, manage resources, and devise strategies in order to
pursue their goals" (Canel 19972217).

In light of Canel's suggestion for a more eclectic, integrated approach, where the
micro and macro, how and why of movements are addressed, I suggest that there is a
connection between this model and semiotics, or making meaning in everyday life. Local
practices can conceptualize the dynamics of domination and resistance (Escobar
19922398; de Certeau 1984). Introducing some of de Certeau's terms is helpﬁrl here.
Ordinary people develop tactics, or the art of the weak, while the dominant elite employ
strategies. Strategies create their own space while tactics are the response of the
powerless. Escobar (19922398-399) highlights de Certeau's (1984) point that because
strategies organize space and knowledge that colonize the physical, social, and cultural
environments, those living within such environments are not passive receivers but 'users'

of the conditions. Hence, "as 'users' of these conditions, people effect multiple and

85

inﬁnitesimal transformations of dominant forms, in order to adapt them to their own
interests and partially subject them to their own rules" (Escobar 19922399). These
popular tactics effect 'anti-discipline' and 'art of making' that operates at the level of
everyday life (Escobar 19922399). These changes are important to the study of social
movements because they provide clues to the reasons, methods, and intersections of daily
life, resistance, and collective political activity.

Fiske (1990), inﬂuenced by de Certeau, proposes an ethnosemiotic approach to
the study of popular culture (Escobar 19922409—410) to gain insight into such domains.
Although developed by social scientists devoted to understanding popular culture,
semiotics can offer tools to explore the connectivity and creative uses between strategy
and tactics, domination and resistance, and practice in everyday life. Fiske examines how
people use the products of the culture industries (such as TV, music, videos, shopping
center, and the like) in a process of appropriation, rather than concentrating on the
dominant text itself (Escobar 19922409-410; Tomaselli 1996233-39). Tomaselli provides
an example of Fiske's understanding. "Television programs as inactive texts, for
example, are produced, distributed and broadcast by the television industry: while
activated texts are created both by their producers and by their audience (Fiske 1987214)"
(Tomaselli 1996233). The uses of such semiotics are cautioned with regard to Third
World actors. Escobar (19922409-410) warns of relating and reducing cultural
production to the uses of dominant products or texts because of the state's inability to
provide for the needs of the population. Socially signiﬁcant groups, nonetheless, exist in

the Third World and can represent alternative cultural possibilities (Escobar 19922410).

86

Further, as said in Chapter One, semiotics offers conceptual tools, and is not a
theory in itself. Anthropologists have been using some of the tools, such as metaphor and
discourse. They acknowledge that discourse is the locus of power and knowledge and
therefore must be viewed as discontinuous and fragmented, the uses of which are neither
uniform nor stable (Foucault 1978). Semiotic tools enable understanding of the pushes
and expanding of discourse in a different way by not separating the performative aspects
from discourse, and recognizing that discourse includes the unsaid, silenced, and
emotionally unavailable. These signs and codes are what "make sense" to the people
involved through the construction of counter ideology. A disability identity, developed
through participation in the movement, provided some of the vision needed to break from
an embodied social suffering. They are pushing the limits of embodiment. Therefore,
although embodiment is important in a social suffering approach, the epistemological
underpinnings are on grounds that distract collective struggle. Nordstrom and Martin
(199227) further illustrate this point:

When resistance is conﬁned to the level of cultural expression the task of

specifying the nature and form of opposition is often left to the anthropologist —

who, inspired with a critical spirit — discems the hidden meaning behind the
informant’s statements and practices. In contrast, when informants begin to
organize consciously, they specify their own understanding of structures of
domination and employ tactics that respond to local circumstances. [ . . . ]
organized social movements may ﬁnd enemies and allies in persons and places

that the anthropologist, embedded in a tradition of critical theory, would rarely
anticipate.

Such an understanding of the possibilities or potential for identity formation
through social movements is more accurate than a social suffering perspective to the
experiences of participants in two additional ways. Discursive identity may be perceived

as a matter of free choice in the postindustrial marketplace of identities and discourses

87

according to NSM theory (Zugman 20032172). It is important not to confuse or
categorize collective action based on popular and democratic distinctions in such an
example. "The popular subject is solely concerned with the politics of distribution, and
the democratic subject with identity and meaning" (Zugman 20032173). At the time of
the rise and strength of the disability rights movement in South Africa, the country was in
conﬂict and transition. Although the state could but would not provide for the black
population, let alone black disabled people, the struggle was both one of distribution and
humanity. This returns us to the argument of condition and action and the conceptual
tools of semiotics in order to more accurately analyze the movement than assuming the
disabled are simply just now ﬁnding a voice. The leaders of the South Aﬁican disability
rights movement knew they had to act aggressively at that time of change to elevate the
status of disability from one of charity and welfare to social and human right. The
second way semiotics and anthropology contributes to the understanding of social
movements is that identity develops in the process of interaction with other social forces
(Canel 19972202). Identity is a signifying practice. Disability identity, like other
identities such as race and gender, works for the pursuit of political goals, and it is based
on an expanded deﬁnition of accessibility that includes the removal of physical, social,
economic, political, and other barriers for meaningful participation in society. Many
social movement theorists assume that a given social group develops an identity ﬁrst and
then engages in strategic action (Canel 1997:202). It is more accurate to say that social
movements foster identity formation. Therefore, the following hows (micro view), and
whys (macro view) of the South African disability rights movement is given with

attention to meaning and strategy in the life of the movement.

88

Social movements do not exist only in their cultural dimension, but can assume
organizational forms (Melucci 19852813; Canel 19972200). Offe (19852830) and Melucci
(1980, 1985) describe such organizations and their actions as de-emphasizing traditional
structures that produce dichotomies of the leaders and the led, members and
nonmembers, private and public (Canel 19972201). As a social movement organization,
SHAP's conceptualization was possible for the following reasons. People in the
townships during the mid-19805 used civic organizations as a form of popular control and
direct democracy, reclaiming authority with the loss of state control (Cherry 2000;
Chabedi 20032361). This is one contributor to the possibility of an organization such as
SHAP. The ideas and concepts of black consciousness, rising in the mid-to-late 19705
and growing in the 19805, became instrumental in freeing Aﬁicans from negative self-
opinion. The 1976 Soweto uprising also disabled many people and the incidence of
disability from violence and poverty were escalating. The government during this time
was struggling to maintain apartheid, as described earlier in this chapter. Organizers of
TABBA and other people with disabilities were also acutely aware why organizations in
Johannesburg and Pretoria were not reaching them. Friday and the people he brought
together in the early days of SHAP was the necessary social network that provided
horizontal links for the promotion of group identity and solidarity (see Oberschall 1973;
Canel 19972207).

Where SHAP inspired others to start their own localized organizations, DPSA
organized self-help organizations to break away from more traditional "corporeal
bantustan" organizations. Although there is no single model for empowerment, in its

broadest sense "empowerment is the expansion of freedom of choice and action"

89

(Narayan 2002214). SHAP was founded on the self-help philosophy of economic
empowerment. Income generation was and remains SHAP'S primary goal. The concern
was not centrally identity-based, but achieved some new meaning to disability by
pursuing goals that were essentially practical. SHAP's interest was economic
empowerment as personal independence and ﬁ'eedom. SHAP itself was not primarily
concerned with challenging dominant structures and ideology, but DPSA would take up
that task. Beginning as an umbrella organization for the increasing number of self-help
organizations based on the SHAP model, DPSA would become the medium and message
of the movement. SHAP, as a base, could "facilitate mobilization by providing
precarious organizational bases from which more complex forms of organization can
develop" (Canel 19972207). The SHAP - DPSA relationship essentially provided a link
between micro and macro levels of organization for collective action.

A democratic-participatory organizational form is only one possible arrangement
for the emergence and articulation of a social movement, a point made by resource
mobilization theorists (Canel 19972211). The public and private roles in such an open
organization encourage everyday practice of the movement's principles (Canel 19972201 ),
but a similar practice, the struggle against apartheid, promoted everyday practice for
justice. To elevate disability, DPSA needed to be strategic on several issues. First, it had
to have some members who could navigate the terrain under apartheid, hence having
white members. But those people also needed to be disabled. Outside leaders can play a
role in mobilizing groups with low organization, power and resources, but theorists
disagree in how the role of leaders and masses initiate mobilization and sustain

movement activity (Canel 19972208). In its formative stages DPSA also met with

90

occupational therapists and other medical professionals, provided a forum for black
people with disabilities and white people with disabilities to exchange and communicate.
With such open participation there is a loose deﬁnition of who belongs to the movement
and diffuse roles encourage practice of the movements message by all (see Canel
19972201).

DPSA'S reevaluation of non-alignment with the legalizing of political parties in
1990 was a critical turning point for the movement. Pursuing engagement with the AN C
indicates recognition of disability as a political identity and, most importantly, the value
of the humanity of persons with disability in the democratizing of the state. This is a
critical strategic component missed in new social movement theory: social movements
are struggles for institutional reform as well as cultural phenomena (Canel 19972204).
Identiﬁcation with the larger struggle against apartheid is a part of understanding
disability identity formation and progress toward movement goals, but the strategic
component in the South African movement was in participating in the events during the
transition to democracy that ultimately won the disabled their rights.

Institutionalizing the movement's vision through the creation of OSDP was a ﬁght
won and, according to Melucci, social movements seek control of a ﬁeld of autonomy
vis-a-vis the political system (19852815; 19802220; Canel 19972200). So with rights won,
is DPSA still necessary? DPSA, as an umbrella organization, remains engaged in the
imagination of other DPOs. The establishment of OSDP and its design is a tremendous
goal achieved through the disability rights movement, but DPSA, as the social movement
organization, itself an integral component of the message, is still perceived as a

generative nexus for meaning if not direction. What is compelling is that when

91

participants were asked about the movement, they eventually talked about DPSA.
Conversations about the reported lapse in the movement evolved into a critical appraisal
of DPSA in its current state. Perhaps DPOs are critical because DPSA was responsible
for the articulation of movement goals. The distinction between social movement and
social movement organizations is helpful here. Social movements indicate a preference
for change while social movement organizations are organized action for change
(McCarthy and Zald 197721217-1218; Canel 19972211). As the social movement
organization, DPSA is itself an integral component of the movement message. Actions
of social movements are focused on cultural codes, as Melucci calls them, and the
movement can be a message or symbolic challenge to dominant patterns (19852801). As
informal networks such as SHAP and the early efforts of DPSA were instrumental to the
emergence of the movement, McCarthy and Zald (197721218) argue that in most cases
formal or complex social movement organizations become the carriers of the social
movement (Canel 19972211). Many DPOs felt and feel tangential to DPSA. While
DPSA considered them members, DPOs became uncertain of their status or only felt they
were fulﬁlling a supporting role. RM theorists "warn that the goals, strategies and
actions of social movement organizations are not always those of the social movement as
a whole" (Canel 19972212). South African DPOs certainly are feeling this disjuncture.
Central themes or dominant signs of the movement were created, changed,
modiﬁed, or in other words can be changed during its course by individual participants
and wider social change. The slogan "nothing about us without us," provides a good
example. The inﬂuence of the wider struggle against apartheid and ideas of black

consciousness inﬂuenced the application and meaning of this slogan. In terms of

92

semiotics, it is a trope or ﬁgure of speech that helps distinguish the importance of
disability in participants' lives and the uses of identity. The slogan effectively quashes
the authority of able-bodied people attempting to affect the realities of the disabled
without the input of the disabled. Therefore, disability in "nothing about us without us"
elevates the status of disability to that of other authorities. Another example is the
symbolic or ideological bond between DPSA and the AN C. This relationship
strengthened the goals and purpose of the disability rights movement, highlighting that
disabled people are part of the larger struggle. This is part of the collective identity of the
South Aﬁican disability rights movement. The collective identity of a social movement
"implies the unity of a shared sense that it is a coherent actor with shared ends, means
and ﬁelds of action, shared relationships, and shared emotional investments" (Gongaware
20032486; see also Jasper 1997; Melucci 1995, 1996). Regardless of whether participants
were part of DPSA at the time, disabled people began to feel a part of the fundamental
human rights of all people, the struggle against apartheid. Practice of justice overlapped
as DPSA also used practices common in the struggle against apartheid, such as marches
and the way meetings were held. Another important postulate in social movement theory
comes from NSM theorists and concerns meaning. They assert that the "creation of new
meanings and the reinterpretation of norms and values take place at the level of social
integration, not at the level of steering mechanisms (the state)" (Canel 19972199). While
the movement achieved many of its goals and elevated disability in the new South Africa
as a social issue to be integrated into all sectors of government, the meaning and

experience is not being felt on the ground.

93

But perhaps there are more reasons for a loss of love for DPSA and feelings of a
loss of movement momentum. As illustrated in Chapter Two, apartheid affected the
experience of disability: the white experience was one of health and welfare with support
from organizations and the state. The black experience of disability was characterized by
poverty, violence, and the system of apartheid. Corporeal bantustans, nonetheless,
contributed to embodied social suffering. The movement's contributions in redeﬁning a
disability identity mediated, borrowed, and manipulated this now legitimate discourse of
equality and non-discrimination in South Aﬁica. But there are subtleties in narratives
about "white" organizations and "black" organizations. Only one participant explicitly
says that DPSA remains for the black disabled person, but that black disabled people
need development too. The national ofﬁce of DEAF SA is generally observed to be white
while the provincial ofﬁce is black, though both are located in Johannesburg.
Organizations based on medical distinction have basically become a sort of interest group
or issue-based group according to disability type. For example, many of the organizers of
the Quadriplegic Association of South Africa wish it to remain for quadriplegics only,
while recognizing a need to include paraplegics and widen their nets to share resources
(such as information on wheelchairs and healthcare maintenance issues) and to advocate
together (on road accident prevention or improvement on removing physical barriers).
The critique by participants that DPSA is not cross-disability as they claim can often be
made about their own organizations. The promotion of awareness and the improvement
of the speciﬁc needs of a disability category or type, like deafness, epilepsy, quadriplegia,
or other disabilities, are the mandates of the organizations to which the participants

belonged. Their role, as representatives of their particular organizations, is to inform the

94

umbrella organization, DPSA in the past, and more currently, the Federal Council. It
must be noted, however, that the Federal Council has reduced much of its function as
national representative of all disability interests. Participants feel without a map or
resource to direct their concerns and propose relevant actions.

Another inﬂuence on perceived loss of movement momentum involves thoughts
on the disability community. Although the theme of accessibility, discussed in the next
chapter, is found in all narratives and provides a common thread, the "disability
community" was conveyed as fragmented. Much of what has been said about ‘hidden
transcripts’ (Scott 1990) and ‘imagined communities’ (Anderson 1990) has been
instrumental in rethinking the shifting nature of identity for political use and the making
of spaces for resistance. Much of this work, however, does not give proper attention to
the multiple possible readings of signs and processes of signiﬁcation that may ﬁlrther the
analysis of what happens when ‘offstage’ discourses or hidden transcripts become public.
"Community" divisions based on disability type are inﬂuenced both by
compartmentalized organizations, schools, and medical specialties and ontological
knowledge of one's own disability. For example, a variety of distinctions can be found
under the label "deaf." There are the hearing, hearing impaired, hard of hearing, deaf,
Deaf, and still more distinctions can be made. Most deaf parents have hearing children
(often referred to as CODAs, or children of deaf adults) and the hearing children can be
"culturally Deaf." CODAs can be multilingual, ﬂuent in sign language and various
spoken languages (such as isiZulu, isiXhosa, and English; or English and Afrikaans), and
they often act as the liaison and interpreter for their parents in hearing-deaf interactions.

Yet another component includes hearing people who aggressively and whole-heartedly

95

want to help the deaf. Their narratives had a vicarious or mimetic quality, a compulsion
to become the other. These people are usually recognized as "outside the Deaf
community." Deafblindness is now just beginning to be brought into the disability
politics arena in South Aﬁica. But among deafblind people there are further divisions:
those from a deaf background who become blind when they are older, as those with
Usher's syndrome; those who are congenitally deafblind, from Rubella, for example; and
then there are those from the blind community who became deafblind from injury and
age. Those from hearing blind backgrounds often become representatives in
communicating or teaching the wider public about deafblindness. Deafblind South
Aﬁica is a new organization started by white Deafblind people who attended special
school together, but contact black Deafblind people to train as facilitators and future
administrators.

Part One, in conclusion, has provided a history of disability and the disability
rights movement in South Africa. The treatment and placement of people with
disabilities during apartheid resulted in qualitatively different experiences of disability
yet the disabled were able to organize given the availability of a democratic discourse and
breakdown of the apartheid regime. Part Two explores the realities of participants
through the lifecourse and everyday life (Chapter Four), the experience of becoming
disabled and appropriation of meaning toward disability identity (Chapter Five), and the
connectivity of disability identity to a changed South Africa (Chapter Six). The above
presentation on language serves as an introduction to the ways the disabled are treated as
objects and identiﬁes one way the disabled have been able to articulate disability on their

own terms. This is the outline for the following chapter.

96

PART II

CHAPTER FOUR
THE DISABLED SUBJECT: ACCESSIBILITY AND RIGHTS
This chapter contains two sections. In the ﬁrst section, lifecourse, I present
participants' responses to questions about the people on whom they relied with the onset
of their disability and what decisions were made for them. These inquiries lead to many
stories about parents, childhood, and household; their schooling; and relationships.
Further questions were sometimes needed to clarify whether people with disabilities are
treated similarly to their able-bodied peers when it comes to important life events.
Through this reﬂexive storytelling many participants broke off on tangents, relating
experiences that happened at a different time and place. These tangents or inserts
describe when they were placed aside or belittled, and were often followed by techniques
to handle the encounter. Participants also recall events when they were not able to act
because they were too young or did not understand their unfair treatment was related to
their disability. The second section, everyday encounters, describes how people with
disabilities are treated as objects and navigate the public arena as adults. It is a collection
of portions from narratives that address common problems which at the very least
irritating and unnecessary encounters with the able-bodied. A closer reading indicates
able-bodied assumptions of human difference. Both sections identify the ways people
with disabilities are consistently, implicitly and explicitly, denied full and meaningful
participation in society. A deﬁnition of accessibility that is speciﬁc to South Aﬁicans

with disabilities will be composed from the two sections and presented in the discussion.

97

Disability often questions personhood, and the issues of personhood are both
implicit and explicit in the collected narratives. This unstable ground was evident in
narratives and participant-observation, and attention to the subject-obj ect relationship
helps determine how disability ﬁgures in participants' lives. The ways participants in this
study are created as "disabled" are paired with how they handle, make meaning of, or
signify their placement. As Das elucidates, contributions to the theory of the subject
argue that the experience of becoming a subject is linked in important ways to the
experience of subjugation (19972205; she references Butler 1997, Mohanty 1993).
Disability, as subject, as a social construction, can become challenged or modiﬁed in
everyday interaction with the able-bodied. The move from studying individuals with one
disability type to individuals oppressed and repressed by virtue of the social category of
disability becomes essential and more critical of able-bodied culture. It allows disability
to become Subject rather than objectiﬁed Other (see Peters 20002598-599) and locates
disability as a potential site for identity creation. What type of disability a participant has
in the following passages does not necessarily matter. Though there are language
differences and certain stigmas that each disability type carries, they remain under the
heading or topic "disabled." While participants conveyed that many of the life events
vital to able-bodied personhood are generally said to include the disabled, these events
are discussed more in terms of their achieved experience and desired goals for all
disabled people. This is particularly evident in their interpretation of accessibility as
acceptance, inclusion, and fulﬁllment of rights.

LIFECOURSE

Childhood, Parents, and Household

98

Parents played critical roles in deciding the futures of participants who were born
or disabled during their childhood years. Preparing disabled children to become active
adult citizens offers a window into decisions such as schooling and basic responsibilities,
and many participants described and analyzed their parent's actions. Thabo, who is blind,
said "My mother played 99 percent of what you see me being today." She taught him, for
example, how to dress properly and use good sitting and walking posture. Tumi, a
woman with cerebral palsy, speech impairment, and mobility disabilities, said that when
she was a child, people thought her parents were nasty because her mother made her do
chores, such as having her cook and iron. Tumi explained that these chores helped her to
become independent and that her mother was very fair in assessing her capabilities.
Mabel, who has cerebral palsy with mobility disabilities, was given the responsibility of
budgeting for groceries and checking their delivery to the house. These mothers were
doing what mothers do, teaching basic life skills to their children. They were also
providing basic mobility skills as in Thabo's case. 36 Nevertheless, many people
remember their parents being especially protective of them as children, because their
parents considered them fragile. Nombuso was raised by a single mother who did not let
him do things around the house, and he learned those skills at a residential school for the
blind. Nkeli's father did not want her to play with other children, she says, because he
was overprotective.

Mothers and other family members accommodated their disabled kin by making
the home more accessible. The standard house in the township is a four-room structure.

In the 19505, the Council for Scientiﬁc and Industrial Research and the National Building

 

3" Mobility skills for the blind develop a blind person's ability to navigate with safety and speed through the
environment. It is also commonly referred to as "orientation and mobility."

99

Research Institute devised a standard design for these low-cost, four-room houses. They
dominate Soweto's landscape. Joseph grew up in the township in a four-room house
shared with his brother, who slept on the couch in the sitting room, his grandmother,
grandfather, mother, two sisters, and their children, yet his mother made the small space
accessible. Stephen's parents made a separate room for him when he was paralyzed, but
he was not secluded. Ben also lived in a four-room house, but noted that there was no
ramp, a stoop in back, an outside toilet that did not ﬁt his wheelchair, a gate that was
difﬁcult to reach, and a shop down the bumpy dirt road that took effort to reach.

Fathers of disabled children, though, may leave, believing the disabled child is not
his because the disability does not run in his family, or a taboo was breeched. One
mother of an autistic son says it takes fathers much longer to accept their child's mental
disability, feeling that they have somehow failed. Indeed, the birth of a disabled child is
often startling to the family. Parents and family members must cope with shattered
expectations of a healthy baby, and raising him or her to be an active participant in
society. Researchers have long speculated that children born with deformity were taken
to the bush to die by their grandmothers, regarding the disability as a curse. Some of the
older participants noted this scenario. However, another hypothesis is that children with
disabilities were not given special treatment, letting them live as other children, but they
died because special attention was needed.

Domestic workers are a common addition in South Aﬁican households, for
families that can afford such assistance. Domestic workers comprise 11 percent of those
employed in the formal economy (Goldman 2003274; Grant 1997; Momburg 2003) and

they are usually black women. Two white disabled participants conveyed they have

100

"black mothers." Goldman (2003274) ﬁnds domestic workers are employed not only by
the afﬂuent middle class, but the white working class as well (Cock, Emdon and
Klugman 1990). This was true not only during apartheid but continues today. Goldman
(2003272) describes the context:

Arguably, while the political context in which nannydom occurs has changed

signiﬁcantly, overall, the post-apartheid domestic worker's lot has not changed

much. It is probably fair to say that even in the post-apartheid era, the oppressive

nature of domestic work continues to be hidden from public scrutiny and perhaps

is more subtle.
Whether hired as a nanny or those duties are assumed as part of "domestics' work," many
(now adult) white children describe a deep and meaningful connection to at least one
domestic worker (Goldman 20032165). Perhaps it is as simple as children inevitably
having attachment to a caring adult, as Goldman states (20032165-166). They have
already suffered disappointment — "the loss of their ﬁrst love object, to pregnancies, to
employment, to the mothers decision to employ a Childminder" (Goldman 20032165-
166)

A domestic worker employed in a household with a disabled child, however,
brings an additional emotional component because of the intimacy involved. For
example, disabled people may require lifting into a bath or assistance in dressing,
handing over their bodies in these situations. Perhaps domestic workers should be called
"caregivers," because able-bodied and disabled children fondly describe bathing, playing,
and other meaningful activities. However, calling a domestic worker a "caregiver" may
imply she has specialized skills, and cost and training then become sticky issues in hiring.

Some disabled children may need more care than others. Nonetheless, domestic workers

may be over burdened or purposefully overlooked as caregivers.

101

Mabel calls the domestic worker of her childhood her "black mother," and
explains "she was more my mother than my mother," ﬁnding needed comfort in the
domestic worker because her own mother "didn't know how to handle me." The life story
of another white woman, Josie, with cerebral palsy, describes her 50-years-plus
relationship with her black domestic worker-cum-attendant. Josie remembers when
Precious needed permission to live in a white household, but because Josie did not have a
permit for her, Josie would hide Precious from the police if she thought the police or
authorities were coming for inspection. During this long relationship Precious had a
daughter, Nokthula, and Josie refers to her as her black granddaughter. With no children
of her own and with such a strong relationship with Precious, Josie takes her grandmother
role very seriously.

Josie described one of the many events where, both as a disabled person and as a
grandmother to her attendant's child, she protects her attendant. The following passage is
about vacationing at Warmbaths, "a very Afrikaans area," with a water park:

Its taken us ages to get where we are. I mean when I was bringing up Nokthula,

my black granddaughter, we weren't allowed to go into places here. Because I

mean some of the places we went into they said, "You can come in and look at the

scenery, but you can’t drink tea here." So I said you can go to hell. I don’t want
your tea. And then Nokthula, we went to Wannbaths and Nokthula was anxious
to get into the water by one of the kiddies in the water — she was little! She was
two. And she was dying to get into that water, okay, but her mommy was with

me because she was helping me. Her mommy was my, my attendant. And then I

got a message from the manager to say that this little black kid had the audacity to

be in the water and she had white panties on. . . . So I said you can go to hell.

And they wouldn’t even allow Precious into the baths to put me into the water

because she was black. So I said ﬁne, I’m leaving out straight away, you can

stick your park up your jersey.

Josie is also very aware about what Nokthula's friends think. Nokthula's friends

acknowledge Josie as Nokthula's grandmother, but are generally cautious. These

102

experiences have anthropological import into studying family; but they also provide
insight into disabled peoples' lives. The disabled woman—caregiver relationship has been
given attention in feminist literature within disability studies. Hillyer Davis explains that
“For both the disabled woman and the caregiver, achieving these insights involves an
intensive, integrated, emotional, intellectual, and physical process of self-centering that
includes recognition of the reality of the problem and the experience of grief” (198423).
The story of Josie and Precious is one where the relationship is more equitable, perhaps
because of a shared responsibility for each other's well-being.

Disabled children learn early in the lifecourse that they are somehow different.
Participants able to access or afford medical attention, the white participants, tell early
childhood stories that involve hospital and rehabilitation experiences along with
residential school experiences. The periods of surgeries and therapy are conveyed as
memories of childhood tinted with hope of walking (with physical therapy or surgery) or
speaking (with speech therapy), of being able to have a better life. Mabel's childhood is
full of emotional bruises from medical experiences. Describing an incident in a
residential school for students with cerebral palsy, she recalled in the following excerpt:
M2 And then when I was in Standard 8, I needed some more surgery and it took a

whole term. The only problem with most of it was the aftercare stuff. You know,

I don’t know now, but at that stage you were in for like six weeks, in a plaster for

nine, you know. You know, long periods of time. Hectic stuff. And I can tell

you some grand stories about thinking I was going to die because nobody
informed me about anesthetics and stuff. My ﬁrst operation I was nine years old

and nobody sat with me and said, “This is what’s going to happen.”

ML: You mean that you’re going to come out of it, you are just going to sleep for
awhile?

M: Yes. They had put me on the trolley and they wheeled me away and I thought this
is it, I’m going to die. And they say, “Count backwards from nine” and you start
—- I’m going, bye! . . . So, um, ja. I think from a, the medical point of view I was

103

ML:

M:

ML:

M2

given the best. I really was. Um, the school specializing in cerebral palsy didn't
know exactly what to do. But they were learning and I was one of their guinea
pigs. And sure there were improvements, but each time I had surgery I had to
start from the beginning. [They told me] sit there, need to stand, and then, you
know, and it was a whole new, “I have a new body now.” And my perception
was I’m going to get up and walk. Because nobody geared me to the whole thing.

Ohhh.
Until I was 15 somebody said to me don’t expect to move or walk.
Okay, okay. Was it a shock or did you kind of ﬁgure it out by then?

Well 1 had become streetwise by then.

Another woman with cerebral palsy, Josie, understands how medicine has contributed to

her disability in a similar tone:

I’m born cerebral palsied, but um I’m now in a wheelchair as a result of being
mismanaged. Medically I’ve had loads of operations and most of them, in fact all
of them except maybe one, I’ve had about 30 ops altogether. Most of them have
gone wrong for me so I’m now in a wheelchair as a result of people cutting
muscles that they shouldn’t have cut and taking out things they shouldn’t have
taken out.

At such young ages both Mabel and Josie have extensive experience with medical

professionals and defy subjugation by characterizing themselves as rebels throughout

their lives.

J:

But I mean I’m, I’m, I’m blessed, really because I come from a family, I’m
adopted originally and um my father was amazing. He brought us all up single-
handedly because my mom died when I was seven, so it was a long time ago and
he was amazing because I have three brothers as well and he educated everybody
and he put the houses together and there was a roof over everybody’s head. But
lucky for me that I was a rebel because I fought against being mommy-coddled
otherwise I would never be where I am.

I’m not in this for the "Ach, shame" syndrome, you know. And when I do need
an "Ach, shame" I’d rather go to somebody whose eventually going to say, “So
what are you going to do about it?” I don’t need to be cloned into a group to be
identiﬁable. And that’s what makes me the rebel.

104

Knowing the life history of these two participants, special schools and medical treatment
are two contributors to their feelings of being outsiders and their struggle to demand
equal treatment. A common expression used by South Africans is, "shame." Whether
someone has died, stubbed a toe, lost a bet, or some other unfortunate occasion occurs, an
often-heard response is "shame." It is also used as a comment on the state of a disabled
person. An able-bodied person may see a disabled person and comment, "shame." This
word is used to acknowledge an unfortunate state, and the disabled are coming to reject
this application to their reality or state of being.

Narratives also showed that participants understanding of other disability types
can be based on misrepresentations. The Deaf are, for example, "rude with sign
language, can call you by what you are," and "do not associate with other disabilities."
An example of the ﬁrst comment refers to name signs, where a sign is created for a
person based on her or his characteristics, and the person is then known by this name
sign, rather than the given name ﬁngerspelled. The name Sign is the person's name, in
sign. Other comments from people with other disability types included "A lot of blind
people are very intellectual," and that "Epilepsy is scary because of seizures." In
summary, as a few participants echoed, "each disability sees itself as better than the
other."

To extend the argument for attention to meaning in anthropological research
generally and collective action speciﬁcally, a semiotic examination of language produces
yet another component of the disjuncture of the disabled and difference in disability
experience stemming from apartheid. Although South Aﬁica has eleven ofﬁcial

languages and other languages are used within its borders, many of the participants

105

discussed language, helping me understand how they use various terms. In isiZulu and
all other Bantu languages nouns are classiﬁed into various categories or noun classes
(Wilkes and Nkosi 1995). In isiZulu, classes one and two designate persons while classes
seven and eight designate objects. Classes seven and eight also contain personal and
impersonal deverbatives (Taljaard and Bosch 1988219). The personal deverbatives are
usually names of people who are known for their special qualities, some of which can no
longer be considered deverbatives, but are used nonetheless (Talj aard and Bosch
1988219). An example is isisebenzi, a worker. Classes nine and ten or the "animal
classes" are described this way because "the animals are usually only those that
traditionally were useful to man in one way or another" (Taljaard and Bosch 1988220-21).
Taljaard and Bosch explain that the people in the animal class are there "because of the
status they have attained in life," but a variety of other objects are also in this class
(1988:20-21). For example a girl is intombi; or inkosi (singular) or amakhosi (plural) is a
chief (Taljaard and Bosch 1988:20-21).

Many of the words described to me for various disabilities fall into classes seven
and eight, and designate material objects. The various disabilities were not in classes one
or two, the classes that designate persons, except for abakhubazekile. People explained
that people with disabilities are in the animal class or used the idiom that they are objects
or somehow related to the level or status of animals. They do not favor these terms,
explaining that the 'izi' or 'im' preﬁx means "some thing." It was explained that people
with disabilities are in an object class, a lower class description. One said it was an

ancient description to be called a word in an object class and that this started to change in

106

the 19805. Most said that these preﬁxes denote an object that is not human, an object, or
a thing. A few said that the preﬁx describes an animal or object.

The word people had the most to say about and rejected is isidalwa. The variety
of translations included "cripple," "disabled person," "disabled," "a creation," or "freak."
The most common response was "cripple," followed by "disabled person" or "disabled,"
yet all agreed that isidalwa is used in an object class. Isidalwa, however, elicited
responses surrounding the notion that people with disabilities are children of God. Able-
bodied people may be looked on favorably in God's eyes for helping the disabled. One
participant said that helping a disabled person is like a blessing, "You can even win the
lotto." Such a blessing works with an individual but not for family members because
they are obligated to take care of their disabled family member. It stimulates notions of
sympathy, charity, and pity.37 Another girder in this matrix is that an isidalwa is a
creation. A person with a disability is a different creation or a special and separate
person, or a different creation of God. One said, "It is something that was not supposed
to be," and this was echoed in almost all the responses about the word isidalwa in ﬁner
ways. Stigma attached to the meanings of segole (singular) and digole (plural) in Sesotho
are similar to that of isidalwa.

There is further classiﬁcation by disability type in isiZulu. Izixhwala, for example
is an object, "not human" meaning "physical disability." This includes people in
wheelchairs, on crutches, people with polio, and amputees; but not epileptics. Ihlanya,
"It's a mad case, a mad case. In Zulu it's bad, bad . . ." and it also means that the person

is uncontrollable. Isithulu basically means a quiet thing, because a deaf person cannot

 

37 Isidalwa is insulting in isiZulu and isiXhosa, but not in Ndebele where it is perceived as a more human
word and carries a different connotation.

107

speak. The belief is that deaf people are dumb or a reject, that because one cannot hear
they cannot learn, and are sub-human. Isinqekle was described as someone with a
mobility related disability. Taljaard and Bosch explain that this word means "a cripple"
and that nqekle is an ideophone meaning cracking or breaking (1988219-20). They also
list isishosha as a cripple, shosha being an ideophone for dragging oneself along on the
ground (Taljaard and Bosch 1988219-20). Both words are classiﬁed in the material
objects or noun classes seven and eight.

Impuputhe in isiZulu and imfama in isiXhosa are words for blind, blindness, or
blind person. It also means "feeling around" or "a fumbler." The belief is that people
who are blind touch everything and feel their physical surroundings. People who fumble
are not bright, because if you are bright there is no reason to be fumbling, as it was
explained. This was also described as being in an object class yet blind people using this
word explain that "if the person is blind." Like isiZulu and isiXhosa, people described
various disabilities in object classes. Sefoﬁt (singular) and difoﬁt (plural) in Sesotho have
a similar meaning to imfama in isiXhosa: "As you walk you are feeling around. I do not
like the term because it is not true. It doesn't mean that wherever you are you are just
feeling around your way, it's not true. But unfortunately, um, they prefer to call us that."

Abkhubazekile was translated most commonly as "persons with disabilities." This
is a signiﬁcant distinction because it reappropriates the meaning of isiZulu words that
mean people with disabilities are not human. It further breaks with disability type
because various disabilities can ﬁt within that term. People explained that "aba-" means
it is plural and in class two, or the person class. For many Africans with knowledge of

isiZulu or isiXhosa isidalwa was most frequently heard growing up. Other

108

interpretations of abakhubazekile included "person with a disability," "the disabled," and
"disabled community." Some participants only learned the word after they became
disabled and was used by both people with disabilities and the able-bodied. For others it
is used the most in meetings of people with disabilities, but is part of their everyday
vocabulary. Almost all people interviewed with knowledge of this word say they teach it
to others to replace isidalwa and the other object-class words. It is isiZulu and used by
the able-bodied and disabled, but home languages other than isiZulu can override the use
of abakhubazekile for words such as difoﬁt in Sesotho.

Abakhubazekile was known only to Aﬁican participants in this study. As for
Afrikaans, there are multiple ways of communicating about the disabled. People have
been choosing to use person ﬁrst-language in Afrikaans, but also use English terminology
because it is more accurate. With the word gestremde there is no distinction between
"disabled" and "impaired," and therefore it is difficult to make a distinction about what a
person would like to be called. Ligaamik gestremt means physically disabled or
physically impaired, ligaam meaning "body." Gestremde persoon is not the person-ﬁrst
variation. It merely means a disabled person rather than a person with a disability. One
could say, "I saw a gestremde, " meaning "I saw a disabled person," however. Verlam, on
the other hand, means "cannot walk." "If you are in a wheelchair and you cannot walk,
you are verlam." Krupel, meaning "cripple," is also common. It is possible to politicize
the difference between Deaf culture and deaf, as in loss of hearing, in Afrikaans. Die
Dowes or die dowes can and has made some use. In South African English there is a lot
of variation and it is politicized as well. People comfortably use both "disabled people"

and "people with disabilities."

109

As stated in Chapter Two, the disability experience of black South Africans is
characterized by poverty, violence, and the system of apartheid. Nine participants born
able-bodied were disabled between the ages of nine and seventeen, and four of them
attended special school. Four of them were disabled from violence, either being shot or
stabbed. The next section, education, also describes childhood and young adulthood
experiences. Of twelve participants disabled at birth (four white participants, eight black
participants), over half attended residential schools for the disabled. School was delayed
for some of the black participants because their parents did not know about special
schools, the children were not allowed in schools, or parents did not see how their
disabled child could attend school. Special schools for black children were also scarce.
The potential reasons why parents do not send their disabled children to school will have
to be answered by the parents. Nevertheless, participants socialized mainly through
residential schools for the disabled have a qualitatively different experience than those
who attended "normal" schools.

The individual model of disability can be seen in Mabel and Christine's example.
Segregated schools and experience with western, institutionalized medicine have
contributed to their desire to change and overcome their so-called individual tragedy. To
the majority of Aﬁicans, however, does the individual model apply? Whyte and Ingstad
explain that where infrastructure exists to only a limited degree that "disability as a
concept and an identity is not an explicit cultural construct. The meaning of impairment
must be understood in terms of cosmology and values and purposes of social life"
(1995210). But this is true of any culture. Aﬁicans were not untouched. Neither can it

be assumed, that we know our own concepts so well, nor that the medical and social

110

models are as encompassing. These models are about power, and the social model of
disability, although only somewhat successﬁrl, is needed for an inclusive society. In an
effort not to draw a circle around the Aﬁican experiences of disability so narrowly, it is
more productive to illustrate that South Aﬁican disability experiences are based on
sociopolitical, economic and other circumstances. The experiences are inﬂuenced by
cosmology and values, but the changes, meanings, decisions are also informed by living
in conﬂict. In other words, values and purposes of the disabled to social life are dynamic.
Education, as will be demonstrated in the following section, can be a locus of
empowerment. The experiences of special schools and normal schools show how
participants navigated that terrain and reinterpreed their experiences.
Education

Primary and Secondary Education

Many memories of childhood and early adulthood of participants emerged
through narrating their school experiences. Those disabled at birth, childhood, or early
teen years have traveled various trajectories. They either (1) were exposed to other
disabled children through special schools, (2) attended "normal" schools where they were
likely to be the only disabled student, or (3) did not attend school.

Two contributors to the variety of educational experiences of disabled South
Africans are the education system under apartheid and the "special needs" philosophy.
The Bantu Education Act of 1953 separated the ﬁnancing of education for Aﬁicans from
the state to direct tax paid by Aﬁicans, meaning less would be spent on their education
(Saunders and Southey 2001218; Kallaway 1984). The strategic idea behind Bantu

Education was that Africans do not belong in the European community above a level of

111

certain labor, and therefore education was deemed unnecessary beyond a certain level.
The act effectively took education out of the hands of churches and provincial authority
and placed it in a uniﬁed government department. Ideas of Black Consciousness
motivated the resistance in the 1976 Soweto uprising, and many (especially teenagers)
died and were injured by gunshot and other overt violence by security forces. People
interviewed were inevitably affected by this experience, their schools having been
destroyed during the uprising. In the 19805, there were 14 different ofﬁcial departments
responsible for education in various areas of the country (based on various bantustan
authority), but private schools began to implement non-racial education (Saunders and
Southey 2001267; Kallaway 1984; Hlatshwayo 2000). It was only in the 19905 that state
schools began to admit all students. The passing of the Schools Act of 1996 provided
equal access to education, yet there are still special schools. These schools generally do
not provide a comparable education and many graduates leave illiterate.

Those disabled during their teen years in the township had a difficult time, as
most schoolchildren in the township did, but the disabled had to cope with the onset of a
disability and continue with life. Special schools and organizations for the disabled,
structures set-up to aid the disabled, seemed more of a hindrance than help. For example,
the high school education of two SHAP members came to a halt when they were
disabled. After a few years, the two people pursued adult education classes from six
o‘clock to nine o‘clock in the evening. They had to use Cripple Care transport because
kombis would not stop for them, their wheelchairs and disabilities proving too
cumbersome.38 Sometimes Cripple Care's vehicles were late or did not come at all, and

the two people then had to approach nearby homes to stay for the night. These two

 

3" A kombi is a Volkswagen mini-bus and cheap form of transportation.

112

people ended up forming a student group at SHAP. Special schools being limited in the
township was one issue, but this group did not want to go to special school. They wanted
to be integrated, to compete equally. They wanted to make the schools accessible. As
described in the previous chapter, they created a relationship with the schools to make
them accessible. The schools allowed these changes (such as adding a ramp built by
SHAP), but did so out of pity and a charity frame of mind.

Another example of township unrest, education, and disability is Sipho's. He was
shot by security police in Soweto at age 17 and left blind from the bullets which are still
lodged in his head. A rehabilitation therapist told him he must go back to school. Sipho
was a good scholar but knew about the age limit; at age 18 he would be too old to be
admitted to the special school. She told him that in America the blind often attend
mainstream school. Sipho then went to a school, one where he was not known because
his previous school had been demolished during the uprising. He developed a way to
keep up with his assignments by using a typewriter and tape recorder. For eight months
he did this, but the principal expelled him, telling Sipho he was wasting his time. Sipho
was called in ﬁont of the school where his expulsion was announced to the school. Sipho
then stayed at home, but his classmates came to visit him and learned what happened.
They were angry, but there were additional problems with this principal molesting
children. The students went on strike and the principal was replaced. Sipho went back to
the therapist and together they went to the district inspector to tell him Sipho's story. The
district inspector said he must choose another school that he wanted to attend. Sipho did
and when the principal interviewed him, Sipho proposed his method of taking notes and

exams. He passed the interview and the principal called all the teachers into a meeting

113

and explained the plan. It worked and Sipho was successful, participating in sports and
the debating committee. Sipho exempliﬁes the need for appropriate understanding and
accessibility.

Schooling, however, is often determined by parents. Nkeli's overprotective father
wanted her to go to special school, but her mother objected. This produced a lot of
tension between the parents: "He went and packed my bags, and my mother packed her
bags." Her mother said if her daughter was leaving, then so was she. The mother felt
that the daughter can go to a normal school like everyone else. The father felt that the
school was going to help his daughter. "Then, the following day, I remember, father
started the car, pushed my bags into the boot and my mother, she started her car." Nkeli's
mother was going to return to her parent's home, and conveyed this to Nkeli's father.
Later, the father asked his daughter where she wanted to go to school. Nkeli replied and
it was a normal school near her home. The mother used to teach her what Nkeli's older
sister learned at school, and therefore Nkeli was prepared to keep up with her classmates
when she entered primary school. Nkeli knows that she could have ended up in a
sheltered workshop.

Another woman, with one leg, says her mother refused to send her to special
schools, but that it was hard because she was teased. While she was in school she
developed an interest in athletics, but she was told to just watch and support the athletes.
It was not until 1993, when Friday encouraged her in to participate in sports that she
pursued long distance running. She has since run the New York Marathon. She thinks

her mother made the right decision, because both knew parents would hide their disabled

114

children, and they in turn did not learn how to interact as adults, saying "They don't get
used to that society."

These experiences are from people growing up in the township. With hindsight,
they rarely question their right to education. Although the above examples are not the
full range of experience of apartheid education for disabled people living in the
townships, the examples speak to the ways in which the matrix of restriction on daily life
made an impact on the disabled and what participants did to push or carry on in a conﬂict
society. Generally, education is perceived as a way to give back to the townships, or, to
intercept a perceived lifecourse that resembles those of their parents or peers. For
example, some women work for a high school education, or college education, because
they do not want to become pregnant at an early age or otherwise forced to work the low-
paying jobs of their mothers. Education in ﬁelds like social work, law, or teaching
provides either a way to help township development, a better life for a graduate outside of
the township, or a mixture of both. Apartheid effectively restricted education, but for
disabled South Aﬁican's black or white, the situation is compounded by special schools.

As mentioned previously, many special schools are residential schools. There are
also "integrated" schools. Integrated in this sense means deaf and blind pupils, and often
pupils with other types of disabilities as well. There are also schools only for the deaf in
South Africa, but even those who are deaf who went to integrated schools have a bond
based on issues surrounding sign language and deaf education. Justice, deaf since age
ten, was taught sign language in primary school, but once he was in high school the
teachers could not sign. This school was in an integrated residential school, and he and

others who could sign taught their deaf classmates who could not sign. Sign language is

115

often learned by peers, and although black students were supposedly able to sign in
school where white students were not, teachers in the majority of schools did not, and
still do not, know how to sign. Schools for the deaf emphasizing sign language can feel
like more of a home because of communication ease and students may not want to return
to their parents for holiday breaks.

An older white woman with cerebral palsy started special residential school when
she was two years old. She would later rebel in her early twenties, noting that she was
labeled "special": "Special doctor, special physio therapist, special this, special that. I
was special but in a negative sense. Special in different and separate." This is where she
learned to be grateful, that people do not need to help. At such an early age she was
forced into a wheelchair by the school administrators so she could arrive to class on time
from the hostels, her crutches and calipers not allowing her to move fast enough.
Residential schools can be thought of as a total institution in the Goffrnan sense (1961).
In the case of residential schools, the total institution is a building and grounds were all
aspects of daily life are enclosed within its boundaries, accompanied by and perpetuating
an equally encompassing philosophy.

There is an underlying opinion by participants that those who attend special
schools have a difﬁcult time participating in mainstream society. Many participants
considered themselves "special school survivors" and when looking back on their
experiences are not sure how they survived. Those who attended normal school
explained that they learned to be outspoken because they could compete as an individual.
But this was true for both normal and special school students, with onset at birth or early

childhood and during their teen years. Some go so far as to call themselves the "liberated

116

disabled" because it was in school that they learned not so much about competing equally
with others, but about the injustices that they would be subjected to as adults after school.
College

Choices in advanced education are fraught with accessibility issues, often ending
in career changes. Before any organized university input into making a campus
accessible, many people were forced to change courses of study because of accessibility.
One woman on crutches was told she could only study logopedics because the faculty and
classrooms were located in the only "accessible" building. 39 There was a ramp, but it
was topped by two steps into the building. She says she did not know how to ﬁght then,
so she postponed advanced education. Another student who wanted to study science was
told to choose another ﬁeld, because he would not be able to reach the laboratory tables
or look into a microscope from his wheelchair. Other participants postponed their studies
because of negative high-school experiences, or because their disability care cost so
much that they could not afford tuition and accessible transport.

In one case, a black Deaf student was assigned an Afrikaans speaking and signing
interpreter. Although there are some similarities in signed languages used in South
Aﬁica, the interpreter used the two-handed alphabet while the student uses the one-
handed method. Speciﬁc information in class (such as names and dates that would be
communicated through ﬁngerspelling) was often lost. The student would miss classes in
order to go to the library with friends to catch up on what was lost in interpretation. It is
also difficult to take notes and follow an interpreter. No choice was given to him, and no

backup was provided when the interpreter did not show up. The INDS outlines the need

 

’9 Logopedics is the study and treatment of speech defects.

117

for interpreters and other accommodations at universities and technikons, but it is not
enforceable because it is only a guideline and not an act.
Initiation

Initiation happens not at physical maturity, but later, typically to announce
eligibility for marriage. It is more commonly practiced with males than females, usually
including a three-month seclusion during the winter on the mountain, stick ﬁghting,
circumcision, and other elements. In other words, it is physically demanding. Two blind
males talked about their initiations. One said that everything was done just as it should
be done, but care was taken. For example, when initiates were driven with sticks to the
river to wash, the leaders were careful not to harm him. But he did not stick ﬁght. At the
end of the ceremony a man came to him and said, "I give you a stick," and hit him on the
head with the stick before it was given. It was explained to him that the stick means he is
a man. Another had to craft his way onto the mountain because it is very uncommon for
a blind person to participate. He came during the night and talked to a traditional healer.
He participated in stick ﬁghting, hunting, and the other aspects of initiation, and now
returns to the mountain, taking up initiates, and leading them out of the initiation school.

Initiation of boys and girls into men and women has long been a practice in South
Africa, although it has changed given various social and political circumstances and some
have even abandoned the practice (see Gasa 2003). Many participants explain that
urbanization changed initiation practices, and today urban boys of a certain age go to
hospitals for circumcision. Recently, however, initiates have died or suffered serious
complications at the hand of self-proclaimed "traditional surgeons" who have turned this

rite of passage into a business. Boys have been abducted from their homes by

118

"traditional surgeons" who later demand money from the parents for their services (See
Maponya 2003; Maponya and Mabasa 2003). The importance, however, is in the
becoming of men and establishing a matured cohort of males who have learned how to
cope with the coming trials of life, and these aspects need to be maintained in the wake of
social forces. "Man" is a new personhood. For many, initiation still socially deﬁnes a
man. Turner's (1969; also see Van Gennep) analysis of ritual — the three-step process of
change in status where one is separated from his previous social status, moved into
liminality, and reintegrated with a new social status — is still applicable.

Both men said they are proud to be recognized as men. The most important
aspect of these initiation experiences is to feel accepted, to be a participant. "They
recognize me. They loved me, you know, the guys I went through it with." But what
about those who are refused this rite of passage? Discussion involved being seen as boys,
often teased, bullied, and called various names. One participant said that the feelings of
exclusion become internalized. One incident, however, was not so rewarding. I was told
a story about a man who uses calipers and crutches who worked for initiation and while
on the mountain his cohort's shack began to burn. He was forgotten and had to crawl out
of the ﬁre where his calipers and crutches were destroyed. The leaders and initiates could
only think of carrying him around, which would have embarrassed him. Instead, he
fashioned crutches from sticks, wanting to be independent. In this way, he was able to

claim his manhood on his own terms.

Gender, Relationships, and Sex
A vital part of personhood concerns gender, and the disabled are often seen as

asexual because of their illness or impairment. Disabled women, for example, face

119

suggestions that they are not really women (Fisher and Galler 19882177; Asch and Sacks
1983; Campling 1981; Fine and Asch 1981). One disabled woman grew up terriﬁed of
boys and men, saying her sexuality "wasn't there" for a long time and that it was not until
she recognized she had a body that she was really a woman. The wife of Bongani asked
him if he could have sex after he was diagnosed with epilepsy. For many, the issue of
sex becomes unstable ground. "People still have the impression of whether you can be
sexually active or not," says one woman with cerebral palsy. The able-bodied are easily
embarrassed and do not know how to approach touching disabled people, not wanting to
hurt or offend them at best. There are also beliefs that people with disabilities are
promiscuous, or that people who pursue the disabled in a sexual relationship are
promiscuous. As a teenager disabled during high school, Ben remarked: "Young. Boy.
Injured. Teasing up the girls, I couldn't do that — you know that stigma." In other words,
the onset of a disability brings gender expectations."O

Gender expectations impact prospects for long-term relationships. Through
marriage, individuals develop important components of their personhood (Udvardy and
Cattell 19922280). "Marriages create different pathways for women and men through
which to seek the same ultimate goal of monetary and food security, physical and social
support, inﬂuence in the affairs of younger kin and community members, and positions of
power" (Udvardy and Cattell 19922280). In South Africa's male-dominated society,
marriages are often unequal gendered hierarchies. Further, disabilities require people to
learn to be dependent in varying degrees based on the nature of the disability, the

environment, social support, and beliefs about disability. Some of the men who are

disabled and married able-bodied women faced difﬁculty from their in-laws. Their

 

4° See Gerschick 2000 for more discussion.

120

spouses' families believed that they would overburden their wives. Thabo is blind and
only after he installed an electrical extension in his mother-in-law's house while visiting
did she tell her daughter she married a "real man." Disabled men who married disabled
women faced similar concerns from in-laws. How will the two keep a household? Still,
other beliefs persisted, such as the belief that the children of a disabled union would be
disabled too, and a stigma that the disabled person could be a beggar and not proper
marriage material.

Like many "identities" experience, people with disabilities have opinions on
whether to marry a disabled person or an able-bodied person. Some are critical in saying
that marrying an able-bodied person is denying a culture of disability, while others think
it is practical. Who is going to change a light bulb if both people are in wheelchairs?
Henry was disabled as a teenager and remembers thinking, "Will someone love me?" His
ﬁrst girlﬁiend was in a wheelchair and said they would not be able to make it as a couple.
They thought they could hire people when needed, but then argued that they would not
have privacy. After that relationship, more dating, and living in his wheelchair, he
became "outspoken" and began to understand his disability differently. He saw "no
difference" with a wheelchair and began pursuing able-bodied women.

One older blind woman said in the past it was easy to date a blind person. She
says, "But now we are trying to shift away from that" because of wanting to live
interdependently. Another said people should date whomever they want and that a
successful relationship depends on how much love is felt for the other person. Some
blind participants said there is a preference for blind—blind marriage and that those

marriages last longer, but it is progressive for blind men to marry sighted women.

121

However, some did share stories of women taking advantage of their blind husbands.

The situation is qualitatively different for blind women. I was told, "If a woman becomes
blind married to a sighted man I can't think of such things." She went on to hint the
potential dangers he would inﬂict on her. If a married man becomes blind, she explains,
the partner "becomes disillusioned, or becomes distant, the relationship actually withers
away." There is the potential of relationship breakdown with the onset of a disability in a
marriage, for reasons such as the person becomes a burden, the person becomes a
different person, or that the person's disability may be considered contagious.

Another reason for instances of disabled—disabled marriages stems from growing
up in residential schools or special protected environments. For the deaf, sign language
provides a method of communication and deaf schools are a place for deaf people to
meet. In the United States at least 85 percent of the deaf marry the deaf, and deaf—
hearing unions are more susceptible to divorce (Nance and Kearsey 2004: 1081-1087). A
Deaf couple participating in this study met in an integrated school, and followed a trend
similar to the American example. Other people with disabilities may choose to marry
other disabled persons based on shared knowledge of disablement. But there is more to it
than simply shared knowledge. In her ﬁeldwork experience, Senturnbwe (19952160)
found blind Ugandan women more prone to blind—blind unions than blind men. While
education and rehabilitation factored heavily into the sample's pattern, blind women may
be attractive as a lover, but marriage is not socially acceptable because she would not be
a good housewife, leaving her status of "woman" unfulﬁlled (Senturnbwe 19952166-167).
She may mother children with a sighted lover, elevating her status because childlessness

evokes barrenness, but all the responsibility is shouldered by her and she may not be able

122

to afford the expenses (Sentumbwe 19952170). Hence, Sentumbwe found that blind
Ugandan women have sighted lovers, but blind husbands. A woman needs the ability to
prove her skills in an economic capacity to ever be considered marriage material.
Participants always brought up ﬁiendships in interviews. The area of ﬁiendship
in anthropology seems relatively new, though it is everywhere in our work, the ﬁeld
experience being comprised often of what we may consider "friendships" or at the very
least cordial acquaintances. There is, however, a lack of agreed upon and socially
acknowledged criteria for what makes a ﬁend (Allan 1996285). Perhaps our shakiness is
this regard is that, except in the last ten years or so, ethnographies concentrated on
kinship as the most important social relationship (Beer 199821912213). Perhaps our
interests were on ﬁnding political, economic, or other aspects, and that friendships came
in the form of "social networks" rather than "friendships." Nonetheless, people reported a
variety of experiences with their ﬁiends. Able-bodied or disabled, people described the
joys and annoyances of friends. Does disability provided a basis for ﬁiendship? It can
certainly play an important role in understanding one's disability regardless of the age of
disability onset. Education at special residential schools often creates cohorts of people
in which relationships can last a lifetime [See Becker's (1983) account of an aging cohort
of deaf people in‘the United States; and Fisher and Galler's (1988) account of lifelong
bonds forged in a polio ward and special school]. Able-bodied ﬁiends, however, are also
treasured. Sometimes able-bodied friends make comments such as "I don't see you as
disabled," and some participants felt disregarded because of such oversight. The friend's
lack of understanding that disability contributes to the individual's sense of person has a

prejudicial effect.

123

With regard to additional important life events, participants generally agreed that
the disabled are given proper funerals and weddings; and lobola, or bride-price, where
applicable, was also observed. This is signiﬁcant because with disability, personhood,
and self can be thrown into question for the individual and those perceiving that
individual and "the disabled." However, some older participants said that disabled people
were not supposed to have children.

In fact up to this day you know when you, when a disabled, when a pregnant

disabled person with a disability goes to the clinic you should hear the remarks of

the nurses. These are educated people, you know. They don't even want to know
whether you are married or not. They just want to know how can you and how
dare you and what type of man, you know.

Comrades

Comradeship is a special kind of ﬁiendship, one that embodies shared principles,
caring, and strong commitment. Those who had political involvement in the struggle
against apartheid and became disabled were asked about their comrades. Comrades often
came to the hospital to visit and take care of those disabled. Only one person who was
blinded explained that he withdrew a bit and became less active, but the comrades would
still come around and provide emotional support. Of the others, comradeship continues,
providing a special bond. For those heavily involved in the struggle, they were never
phased out when disabled, surviving as a unit together. Although those disabled say the
comrades did not understand the disability component as a parallel struggle, they
nonetheless continued to ﬁght.

EVERYDAY ENOUNTERS: PITY AND FEAR IN LIFE'S LESSONS

The life histories and memories of participants in the above section are paired

with more recent memories and common problems participants face as adults. The

124

section is divided into three areas that were common in narratives and illuminate the ﬁner
logic in interactions with the able-bodied. The ways the disabled are treated as objects is
evident in how the able-bodied friend, family member, or aid is addressed. Often a
family member serves as a go-between, and service-based employees address the able-
bodied companion rather than the person with the disability. However, participants were
very articulate about what was happening to them in these everyday interactions. They
have ways of approaching those who are undermining them and demand equal treatment.
These stories deserve attention, because they describe the practices South Africans with
disabilities use and make common a rights-based approach to their own self-
representation.
Tea with Soured Milk: Outings with Friends and Family
People with disabilities are often ignored or treated as something other than
ordinary when venturing into public spaces for typical services. The following is a very
common story regardless of disability type:
They stare, you know. And when I'm in the township, even today, when I walk
into a shabeen with my friend or somebody, they ask him you know, "Does he
drink, really?" 4‘ They don't ask me, you know. And I don't understand this. But
I've learned to come to terms — I used to be angry before. But now I've learned to
come to terms with it. Fortunately I have very supportive friends, myself. You
know if you ask me whether I am drinking tea or not then you say, "Ask him, not
me. He’s going to drink on his own behalf." You know, "Ask him whether he
wants to drink beer or not. Don’t talk to me." Things like that. Which is quite
good. I have very, very supportive friends.
Employees at restaurants, bars, movie theatres, check-out lines, and other establishments
with a service component often approach the able-bodied companion as the go-between

for the person with a disability. Not being recognized as a person able to speak for

oneself frustrates people with disabilities. They feel patronized or are purposefully

 

4' A shebeen is an informal bar.

125

ignored. Many people told story after story about turning the situation around and Mabel

provides an example:

M2

What is going to happen is my quality of life for the day must be fulﬁlled. And if
I have any choice in how it’s going to happen, I’m going to make it happen. So if
there’s weird things like, "Hello, I’m the customer here, why don’t you talk to
me?" I usually do it with a smile; and then, "Good luck to you." And I can get
bitchy enough for them to wake up; but if they don’t wake up at that point, you
know. Um, would be to movie houses where the guy who chose to ignore me —
well, that was his peril, because in the end he wanted to give me the whole house
free, you know, for the next movie. And I just made him squirm even more until
he, I was happy.

M and ML: [laugh]

M:

ML:

M2

On the other hand it’s not worth that kind of effort, you know, it’s um . . . what
have I achieved for myself? The point is that he’ll never forget me.

Yeah, that’s true.

But . . . I mean if I can spread the lesson and get lots of fun out of it as well — it’s
win-win for all of us. It’s good, you know. It doesn’t always happen.

Friends and family can determine the outcome of public encounters. Generally, the

support from those who understand disability turn the situation around or make

accommodation based on the disabled person's understanding. Sometimes disabled

people need an alternative support network of sorts in order to accomplish equal ground,

because the family fails to understand the needs of their disabled kin. Walter tells how a

core of able-bodied friends understands him, while Josie's family does not seem to " get

it."

W:

ML:

Um. You know what? I’ll tell you one thing. My friends, I have about ﬁve
friends. They are all able-bodied people. And uh . . . they treat me like them.
You know when I’m with them, they do forget that I have the disability and I also
forget when I’m with them that I have disability, you know.

You’re just friends.

126

ML:

ML:

ML:

ML:

ML:

ML:

Yeah. But you know the way they describes it, it’s they normally say to me you
know what Walter, when we are with you, there are these unique things that we
do with you. You know. We don’t do common things. Then I ask them what do
you mean when you say you don’t do common things? They say we know that
when we go into a building where there are no lifts, it’s only steps you know, we
know that you are not going to climb those steps like us.

Right.
We are going to climb that the unique way, you know.
[chuckles] the unique way.

Yeah! And we are going to climb them commonly because we do that on daily
basis, you know. And there are so many things. There are so many examples that
they did with, you know when I’m with them like the other one is a lawyer, this
other one, the two, they are managers and then this one is an accountant, this other
one is a director, you know.

Okay.

So when I’m with them they, they talk these things that makes sense to me, you
know. And they always encourages me. Actually they also play an important
role in my life, you know, like you know they have accepted me and you know
like . . . on Tuesday we went to watch the match at night, at eight, at Ellis Park.
And what happened there, it was so ironic, and I was not aware of that, you know.
Uh, we went into the stadium. I didn’t go to the place of people with disabilities.
I just told myself that I’m going to sit with my friends, you know. You know, it
was ﬁve of us, then when we enter the stadium you know there are so many
people that we enter the stadium — two of them, they will run you know and go
and-check the space, whether there are seats.

Five seats together.

Yeah. Then they will quickly come back and say no, there’s no space in this
tunnel. They will run to another target, and so I’ll be coming the other three, you
know. And they said no, there’s no space. They’ll come running to us and say go
straight.

The next one.

Yeah, to the next one until they ﬁnd the tunnel where there are seats. Then, what
did they do? This other one went there and booked ﬁve seats and this one was
standing at the entrance for us to see him.

To see where you were at, yeah.

127

ML:

ML:

ML:

Yeah, you know, then we went in, you know. Then, the two went in, then it’s me,
then the other two, I was in the middle of them. Then after the game I asked
them, why did they do that? They said no Walter, ﬁrst thing you know you
cannot run. So we had to make sure that we get the space for you. You must not
go into the tunnel and go back you know, it’s, it’s, you, eventually when you sit
down you will be exhausted and you are not going to enjoy the game. You know.
So I said wow, this guys, they know they

They fought together, ja.

Ja, you know. So, they, they really know me. So they, when I’m with them, I
feel encouraged, you know because I know, these people knows that there are
some things that I cannot do.

And they know what your best interests are.

Yes.

They don’t guess at what your best interests are.

They, they know it. You know. Like, you know when, whatever they do you

know, they make sure that I feel I’m with them. That’s why I enjoy their
company. Yeah. It’s, and with my family, too, you know, wow.

Josie, on the other hand, asked her father to drive her to a work-related appointment and

ended up in a ﬁght for understanding.

And I said to him one day will you drive me because I’ve got a couple of
appointments and I had to, I had to meet with a company and I had to go up a
ﬂight of stairs and my father said, “I’ll carry you,” and I said, “No you bloody
will wait! If I can’t get up the stairs then I just won’t go." And he said, “Don’t be
bloody stubborn!” So I said, “I am stubborn! That’s why I’m your daughter!”
And I locked my hands around the barrister so he couldn’t pick me up and he was
getting very agitated with me and getting all kind of red in the face. I said, “Dad,
we’re wasting time. I’ve got an appointment. Just let me get there the way I
know how to get there.” And I did. I was up.

Josie's family featured in another event:

They see me as a rebel, because they came here on a holiday, just before Nelson
Mandela was released and um they, I went with them to Sun City for a week and
my brother is an academic, he can’t relate to just ordinary, everyday things. I go
with them to Sun City and the host talks to him and not me and I said, “Excuse

me, I can tell you what I want,” and he just about shrivelled into the ground, and

128

he said, “How can you be so rude?” I said I’m being deﬁnite about what I want
and if he can’t talk to me, he needs to know. This is the way it is. He said, “Well
you’re just being obnoxious.”

Encounters like these essentially motivated Josie to seek relationships that were more
supportive than her own family. Like Mabel and participants from the previous

examples, Josie is aware of being purposefully ignored.

Earning Potential: Adventures in Economics at Pick n'Pay42
A cormnon judgment from the able-bodied occured at the grocery store and
concerned whether the disabled can afford what they are buying. The able-bodied
questioned their ability to work, where the money came from, who would employ a
disabled person, and if their resources were legitimate.

W2 So that’s why I always tell they don’t take me for granted like recently, last month
we went to town, with my wife to make the grocery and so on. Uh it’s a small
town and full of white people. And she was pushing the trolley. There are these
people following us. Standing in a queue you know if I look I see that oh it’s
about twenty, thirty people in ﬁont of me. I said, "I’m coming." I went to the
manager’s ofﬁce. "Can I please speak to the manager?" "What do you want?"
"Do you cater for people with disabilities in this store?" He said yes. I said, "No,
I’ve been waiting there for about ten minutes, nobody was looking at me, nobody
was willing to help me. So I need help, now." You know I demanded help. He
went out of his office. The ﬁrst thing he want to said, no, go to that lady who will
help you. I said "No, you go and tell her to help me." You know he wanted to
refuse. Then I said, "If you want to see your store on the ﬁrst page of the paper. .
. ." I said to him you know I threatened him, you don’t know who you are
messing with. Oh then I called my wife, she came you know and I hear these
people. They are talking Afrikaans. I know Aﬁikaans. [laughs] They don’t
know that I know Aﬁikaans.

ML: What do they say?
W2 How am I going to pay that? I’m going to pay it with cash or what? Because

ML: Oh how you are going to pay your groceries?

 

’2 Pick n'Pay is a popular grocery store chain.

129

W2 Yeah. Yeah. It was making something like 800 rand. When this lady’s ﬁnished I
ask her, do you take checks, do you accept checks or credit cards? And she said
no, we take both. Then I said okay, I’ll pay by check. Then I wrote out the
check. Then they ask themselves where does this guy get the money? Then I,
you know after that I ask them! I said "Don’t you think that I can work?" I said
you know some of you, I can run your business, your companies. You can give
me the responsibility to run your companies. And I said to them you want to
know what I’m doing? And they said to me "Yes!" [He tells them what he does]
Wow — they were so surprised. Then I walked out of the store. You know even
today they know me in that store. Every time I walk in that store there’s this
person who comes running to me, push the trolley, you know, just instruct, put
that one in, you know. You tend to be the president, that’s what I’m saying.

Another grocery shopping adventure involves Dumisani (who is blind), who ﬁnds
an employee at the store to take him around the shelves to gather his groceries. His
driver usually drops him off at the store and a woman who works there comes and asks
the driver if Dumisani can pay for groceries. When he shops with his sighted wife she
unpacks the groceries at the till and tells her husband to pay. The women who are
checking the groceries are usually shocked that a blind man is paying. These interactions
are very common, strenuous, and unnecessary. The disabled appear dependent and
unable to earn a living and, as in the previous sub-section, must explicitly ask for
attention and service.

Forcing Labor: Work, Mental Ability, and Intelligence

In work and other professional situations, the mental capacity of people with

disabilities is often questioned. At best they are patronized.

1 arranged to get a job at the railways which is way below what I ever thought,
um. And, ﬁrst I had to go through all these academic tests and I didn’t ﬁnish the
tests and didn’t know if I would have got it. And eventually they gave me an
interview. I get there and the guy looks at me and says, "Can you write?" And I
said, "I have a matric." And he says, "Ja, but can you write?" And I said, "I think
you have to for matric." You know. Cause be, "We want you to write numbers
so I want to see how you write." I had to literally write one to ten to show them.
It was the weirdest interview I’ve, now that I know what an interview is all about.
I then got this job and I was allocated a supervisor who was a colleague who sat

130

with me for two days and taught me. And my supervisor never spoke to me. She
spoke to my colleague, to tell me what to do. I don’t know what her issue was.
Now I’m 19 and I’m treated like a child of 15. Again, the same kind of setting, all
the girls in my — which is a huge ofﬁce of about twelve girls — most of them
Aﬁikaans, none of them spoke English and none of them spoke directly to me.
Cause if it speaks it’s going to cause an infection or something, you know. They
would speak to my colleague to give me a message. You know, that kind of
thing. So we’d have lunch breaks and they’d all go out and my colleague would
say to me, "Do you want anything?" Not "Do you want to come with us," but
"Do you want anything?" So again, I was sort of . . . put aside. And that’s howl
thought life was. You know. It’s very strange.

While family members are often an advocate or go-between for their child, such help or

assistance is not appropriate once they are adults with jobs. As an adult with cerebral

palsy and a speech impediment, Tumi explains that her mother is often contacted instead

of her:

That’s why my mom gets so upset when I’m doing a [project] and somebody
instead of contacting me they contact my mother. She goes, "She’s 25, she can
make her own decisions and if you want to be upset with my daughter, continue
doing what you are doing." Because I’m my own person.

Others have more positive experiences, such as Hendrik, who is blind. When he is in

meetings, the chairperson introduces everyone around the table to orient him to the

surroundings. Other disabled people must initiate accessibility and disability issues in

frank ways:

Yeah. So now I tell people that if you are, if you, if you don’t have disability, you
don’t know what you are missing. That’s what I normally tell people. They miss
something. I was invited by this [organization], you know to one of their
presentations and uh . . . before I made my speech there were this able-bodied
people. Now when they call me they go running to you know the front there and
see me walking so slow. Normally. Then, and I come there and I said, "You
know what good people? I don’t know if you see the difference between me and
the other speakers." Say bah! What was it? I said, "The other speakers were
running to come and make their speech because they wanted to ﬁnish as quick as
possible, you know and go and rest and enjoy their food. So with these people
with disabilities that’s why we don’t make mistakes." [We chuckle together.] We
don’t make mistakes! We, you know, you take your time! Each and everything
you are doing, you take your time to do it. So, that’s why. And each and

131

everything that we do, we do our outrnost because we take time to do it. So these
other people they are always in a hurry.

After many stories, we often discussed how tiresome it is to be the spokesperson for our
disabilities. Queen follows a routine when she is tired of the stereotypes of blindness.
After a presentation at a woman's conference, Queen was greeted by:
a black woman to congratulate me, you know your English is so good, where did
you learn it from? And I would say from my mom’s madam, you know, they
wouldn’t even get the gist of . . . because nothing comes to them that I can be
educated just as they are. 43 Just as they learned English in school I had learnt my
English there, but no, they had to ask me and I would say my mom’s madam.
And they really wouldn’t know it was an insult. Until I had to address them on
that at some stage. I said you know some of you I always kid you know where I
learned my English. And my short reply is my mom’s madam, you know,
because you don’t think I have a right to education. Do you know they all felt so
bad. . . . They’re very careful of me, too, you know. . . . when I just keep quiet
and say why should I dehumanise myself. I’m really not taking myself to this
level you know.
Assumptions about the mental capacity of the disabled are similar to racist belief, as
discussed in Chapter Two. These are additional examples of assumed difference. Some
people felt empowered when they started to work after their disablement; others felt as if
they were a token disabled person and found other work. Granted, there are people with
mental disabilities who do not have the capacity to perform certain tasks, but they are still
able to complete other tasks. Decisions to demonstrate mental ability, skills, and
accomplishments are needed and performed by the disabled, often to prove their worth.
Similar to the grocery-store experiences, production and ability are related to the sense of

person in that they can perform in many aspects of society.

DISCUSSION:
SOCIAL SUFFERING AND IDENTITY

 

’3 A madam is the female employer of a domestic worker.

132

Disability itself is not the origin of the oppression of the disabled. The treatment
of the disabled and creation and maintenance of barriers to meaningful participation in all
aspects of life are informed by able-bodied assumptions of difference fundamental to
what makes a person. Similarly, forms of oppression can create certain forms of
disability understanding. This chapter identiﬁed experiences and practices for
representation that call to be treated as human and living beings rather than objects, or
further, a somewhat different entity. The informing discourse is not only from
institutions speciﬁcally designed for the disabled in the bantustan sense, but from the
people and environments common to the able-bodied (such as grocery stores, the
household, and other realms).

Accessibility, as described in Chapter One, is what other identities demand: the
right to participate in a socially meaningful way, equality, non-discrimination, access to
education and employment, and other fundamental components of democracy. An
exploration of accessibility was a goal for this chapter and it was examined through the
lifecourse and everyday practices of participants. Several rights-based themes are evident
in the treatment of the disabled in the lifecourse. Were disabled children allowed to play
with other children and contribute to the household? Were they provided freedom to
attend school? Are accessible buildings and materials provided? Should the disabled
reproduce or even love? Who should the disabled pair with? Questions about ability to
learn, earn a living, and basically subsist emerged through the narratives in the everyday
encounters section. In these ways personhood is thrown into question. In a larger sense
there are bell-curve assumptions of fundamental difference that echoes a mind-frame of

speciation.

133

Although the next chapter addresses identify formation and the onset of disability,
a generalized outline of ways able-bodied discourse informs everyday life can be drawn
from the above presentation. The themes are signiﬁed meanings countering that of able-
bodied dominant discourse and ideology. Although the disability rights movement has
worked toward fundamental change in the areas of education, employment,
transportation, and other critical components for meaningful participation in society, the
disabled continue to struggle for access and meaning. In this regard, identity is a socio-
emotional need (Shaw 1994) and politically motivated. As I said in the introduction to
this chapter, many of the life events vital to personhood are generally said to accept the
disabled, but the experiences of participants is discussed more in terms of their achieved
experience and desired goals for all disabled people than common experience. Thabo
may have been accepted to college, but his efforts for advanced education was made
difﬁcult by an inﬂexible interpreter. Dumisani was able to go to initiation school as an
outcome of a crafty conversation with a healer, but most disabled boys are not able to do
so. These stories and experiences are exceptional. Participants have been, to a degree,
able to push their ways into spaces seemingly designed to bar them (for example, by
building ramps, fostering relationships that are based on an understanding of disability,
and demanding proper service).

What expands or retracts the potential for such appropriation of disability for
these South African participants? Appropriation occurs when an interpreter of a text is
open to its meanings and creates a personal meaning (Ricoeur 197623). Paul Ricoeur
uses the term 'appropriation' to identify the process readers of a text undergo that effects a

broadening of capacity for self-knowledge (1981250). Appropriation is a response to the

134

text rather than a remaking of the text in one's own perspective. As introduced in Chapter
Three, participation and engagement in a movement can foster identity formation. The
family, friends, and everyday navigation of the environment inﬂuence such components
of identity formation as well. Parental decisions on schooling, household accessibility,
educational experiences, and other aspects of the lifecourse are guided by able-bodied
ideology. Whether this ideology is technocratic, biomedical, community-based or
otherwise, the disabled for the most part do not ﬁt in. This can be seen as a response to
the text, their experiences informed by able-bodied ideology, but found inappropriate and
demeaning. It is appropriation because they are using that text to deﬁne their
requirements for meaningful participation in society by removing not only the physical
barriers, but the social, economic, political, and other barriers as well. It is their
deﬁnition of accessibility. That participants achieved these standards for themselves
should not be interpreted as luck, but an acted upon process of self-exanrination and the
production of a new way of thinking about their disability.

That disability is a politically motivated identity is not lost on the participants.
This is evidenced in the distinction people from the township make about two ways
disability can be handled. The ﬁrst way included those who understand disability identity
and those disabled who remain controlled by the able-bodied in oppressive ways.
Participants involved in shaping SHAP and TABBA, who pushed their ways into able-
bodied territory, and those participants who consider themselves "special school
survivors" (regardless of disability type or age of disability onset), indicated that they
were an accepted part of the scenery. These participants described how they were

"naughty" in school like their peers, participated in sports or other activities, or hung-out

135

"in the commrmity" with friends. These scenarios were described more frequently by
males than females, however. The young women, when they were children or
adolescents, stayed inside and contributed to household activities more than boys, but
they still had good ﬁiendships outside of the home.

The second way disability is handled in the township includes those unseen
disabled people, kept behind closed doors and hidden. A disabled family member may
only be known to that family. Stories of persons being taken out of doors to use a toilet
once or twice a day were related to me. Another experience of a family that I have
known for some years demonstrates the secrecy. I knew my friend had a disabled
brother. He told me this only because he knows I work in the ﬁeld of disability and
asked for some advice. The brother was a double amputee (of one arm, one leg) and a
diabetic. I had visited the family’s home in the township many times, but I did not know
the brother lived there. We usually had a nice drink in the sitting room, dining area,
kitchen, or back stoop. The brother was in the house the whole time, laying on a bed
alone. The following excerpt describes this dichotomy between the two ways of handling
disability in the township:

ML: Tell me that story about the man that’s in your community at home.

W2 Okay. Urn this guy, he, he was not being, he was not born being disabled. And
he was involved in an accident. So it’s about three houses from where I’m
staying. And uh he’s always sitting under a tree. You know and he always sees
me, you know when I go to my wife’s place, grandmother’s place, you know, by
passing you know. Sometimes I’m working with my whole family, my two kids
and my wife. He one day asked me, "Walter, tell me, uh why are you so
conﬁdent? I like you, I like your family, ah you know the way you are." It was
simple for me. I just say to him I’ve accepted my disability and I don’t want to
depend on anybody. I believe I have to take care of myself. And he said to me
what must he do, you know? The problem with people with disabilities he

explains that every time he asks you what can I do to, to stay focused? He’ll think
of you say to him go and apply for a disability grant. I say to him, "Look, it’s

136

very simple. Go out there, look for the job, you know, and work for yourself.

Then you will see. People will start to realise that you are also a human being.

But as long as you are sitting under a tree people will see you as a disabled

person." You know.

The above presentation and examination of the lifecourse and everyday life
allowed an opening of object/ subject distinctions. It provided an opportunity to more
carefully read assumptions of difference and identify a process of realization.
Accessibility will feature in the next two chapters in ways important to identity
formation. Though identity is a signifying practice or vehicle for meaning it does not
imply that meaning is static. The potential for multiple readings or interpretations can
increase in conﬂict and transitional societies. It can perhaps expand the potential for

appropriation. This is in addition to the above identiﬁed areas of participation in a

movement; family, ﬁiends, and everyday navigation of the environment; and lifecourse

experience.

137

CHAPTER FIVE

EMERGING AND CONVERGING:
UNDERSTANDING DISABILITY IDENTITY AND SELVES

The goal of this chapter is to ﬁrrther explore the ways in which disabled South
Africans come to understand their disability. Disability identity, like other identities such
as race and gender, works in pursuit of political goals, and is based on an expanded
deﬁnition of accessibility that includes the removal of physical, social, economic,
political, and other barriers for meaningful participation in society. Identity, therefore,
can be understood as a politically motivated, socio-emotional need and is applicable to
disability identity as a response to the forces that oppress and repress the disabled. This
chapter is divided into two sections. The ﬁrst section, disability onset, addresses
disability acceptance in terms of ontological security and disability identity. The second
section, worlds and identity, explores how encompassing disability can be and
contributes to a community of knowledge. Multiple identities and contexts can create or
foster ontological security, and the two sections address how disabled participants, when
confronted with these multiple identities and contexts, incorporate disability into their
narratives.

DISABILITY ONSET

Regardless of disability type or age of disability onset, disability identity, as a
way of knowing, has its own timeline and history in people's lives. Additional concepts
need introduction because they help clarify differences in anthropological and social
theories, and descriptions of participants' experiences of disability. Where embodiment
concerns the "existential grounds of culture," and attempts to collapse Cartesian

assumptions, ontology and epistemology contribute to these postulates. Generally,

138

ontology is the study of being and epistemology is the study of knowing. Inﬂuenced by
Foucault, ways of knowing are related to discourse. Foucault's 'order of things' are
essentially epistemological frameworks, concerning ontological assumptions. When
people become disabled they face a change in ontology, and epistemology becomes
reshufﬂed. People who become disabled, having had able-bodied knowledge prior to
disablement, grasp signs that are now signiﬁed differently.

The fundamental assertions about 'being' change for people who become disabled.
For example, the physical living space, a house or dwelling, "looks different." While it is
true that this signifying practice involves the body in some way — for example with
paralysis, the onset of seizures, gradual loss of sight — ontology may change, but
epistemology, or ways of knowing, is inﬂuenced through a new mediation or signifying
practice. Another way to explain the interplay of ontology, knowledge, identity, and self
is through Giddens' (19842375) use of the concept 'ontological security.’ Here, the
security of being requires maintenance of identity and self. In semiotics, reality can be
said to be an effect of the sign and that contested reality lies in sites of struggle. The
onset of a disability can fracture ontological security. For example, expected plans in the
lifecourse may be perceived as not feasible with the onset of a disability. Signs will be
signiﬁed differently, or challenged, or accepted with the onset of a disability. Identity
and self are signifying practices, and are impacted, compounded, and inﬂuenced by the
management of disability. The way society handles its disabled becomes critical.
Experiences in or with rehabilitation, special schools, communities, movement,
organizations, and relationships shape or inﬂuence how people make meaning of

disability in their lives. While disability identity, or rather a broader, inclusive meaning

139

of accessibility, has been instrumental to claiming disability, participants' ﬁelds of
meaning and making meaning are nonetheless shaped by such experiences.

As said in Chapter One, identity as a politically motivated, socio-emotional need
is applicable to disability identity as a response to the forces that oppress and repress the
disabled. But identity is also a dialectical and discursive relationship of the self and
situated experience. Identity used to refer to ‘sameness’ and in psychology meant
‘selfsameness’ (Sbkefeld 19992 417). Csordas (19942331) notes a trend in social
psychology to isolate aspects of the self, as in self-concept, self-irnage, self-awareness,
self-esteem, for analytical purposes (Gecas 1982). In terms of semiotics, self means self-
representations while self-experience refers to the pro-cognitive; but the self in any of
these distinctions remains culturally organized (Ewing 1990). Cultural anthropologists,
though, argue that 'selves' are culturally shaped and inﬁnitely variable, hence the idea of
'shifting selves' (Ewing 19902253-254). Ewing (19902251) argues:

. . . that in all cultures people can be observed to project multiple, inconsistent

self-representations that are context-dependent and may shift rapidly. At any

particular moment a person usually experiences his or her articulated self as a

symbolic, timeless whole, but this self may quickly be displaced by another, quite

different "self," which is based on a different deﬁnition of the situation. The
person will often be unaware of these shifts and inconsistencies and may
experience wholeness and continuity despite their presence.
In light of this, she proposes that people manage inconsistency through semiotic
processes, through the construction of a series of self-representations based on "selected
cultural concepts of person and selected 'chains' of personal memories" (Ewing
19902253). Further, "Each self-concept is experienced as whole and continuous, with its

own history and memories that emerge in a speciﬁc context, to be replaced by another

self-representation when the context changes" (Ewing 19902253). This is counter to the

140

claim anthropologists make that the "experience of wholeness, continuity, and autonomy
that we normally associate with the 'self’ is a culture-bound, Western notion that is not
applicable to most non-Westem cultures, where the Self is experienced contextually and
rationally" (Ewing 19902253, citing Shweder and Boume 1984).

There is a connection with anthropologists seeking selves, and with semiotics.
Rosaldo (1984:140-141) ﬁnds connections between self and identity, and further detaches
from a perceived bounded Western notion of self:

If culturally organized views of possibility and sense must ﬁgure centrally in the

acquisition of a sense of self — providing images in terms of which we

unselfconsciously connect ideas and actions — then culture makes a difference that
concerns not simply what we think but how we feel about and live our lives.

Affects, then, are no less cultural and no more private than beliefs. They are

instead, cognitions — or more aptly, perhaps, interpretations - always culturally

informed, in which the actor ﬁnds that body, self, and identity are immediately
involved.
How we feel, then, can be related to practice.

De Certeau's The Practice of Everyday Life is an examination of the creation of
anti-discipline. His analysis of the pedestrian speech act identiﬁes characteristics of
practice and the relationship between the forms used and the ways of using (de Certeau
1984298). If it can be said that the environment or 'spatial order,’ to use de Certeau's
term, "organizes an ensemble of possibilities (e.g., by a place in which one can move)
and interdictions (e.g., by a wall that prevents one from going further), then "the walker"
in this case "actualizes some of these possibilities" (de Certeau 1984298). "But he also
moves them about and he invents others, since the crossing, drifting away, or
improvisation of walking privilege, transform or abandon spatial elements. [. . .] In the

same way, the walker transforms each spatial signiﬁer into something else" (de Certeau

1984298). This is not just a walk in the park. The catalyst or vehicle for meaning is in

141

signifying practices. While a sign stands for something else, is signiﬁes meaning. In
other words, "Signs elicit other signs in necklaces of signiﬁcation" (Tomaselli 1996235).
A relationship is identiﬁed between the 'forrns used' and the 'ways of using' in de
Certeau's semiotics whose possibilities are limitless. The natures of this relationship are
evident in analyzing such pedestrian speech acts because they contain statements with
truth value (the necessary, impossible, possible, or contingent), epistemological value
(the certain, excluded, plausible, or questionable), or ethical or legal value (obligation,
forbidden, permitted, or optional) (de Certeau 1984299).

People were able to reﬂect on the moments after they were disabled:

I went through the ups and downs like anyone else: the hope, the expectations, the

"don't worry, go to the physio." . . . You raise expectation. No, no, I'm not going

to be a disabled person permanently, I'm going to walk. I'm still young, my

muscles are going to grow. And then that hope dies a bit.
Another man who was young when a battery explosion blinded him explained that he
could see "Something like six meters or so. And then it was gradually dying away until it
was completely dead like it is right now." The idiom of something dying was not
organically common in the narratives, but important because indeed becoming disabled is
like entering a new world, one that looks, smells, and feels familiar yet profoundly
different. This is a change in ontology. The fundamental assertions about 'being' change
for people who become disabled. Their home, for example, "looks different." How
people began to understand their new life as disabled played a role in their understanding
of how society and relationships work:

Staying in Soweto in this four-room house. Ohhh it was tough. House without a

ramp . . .. Stoop in the back, no ramp in the house. The outside toilet cannot

accommodate the wheelchair! Cannot ﬁt even the wheelchair. Then it began to
change and see then, the environment, I’d say— it’s not for me! This place is not

142

me, I don’t belong here. Then ha! Then when you go out of here, you can’t even
go to the sh0p! From here a gate . . ..

These are times when ontological security is in jeopardy. Signs are highly unstable in
their previous meanings, but there is a need to maintain or regain a sense of wholeness in
the face of conﬂict (Ewing 19902270). The newly disabled body does not afford security
for self-wholeness. This may be true more for those with a sudden disability onset, as
with an accident or overt violence than for those with disease characteristics that
gradually disable. Ewing explains, “One strategy for restoring [a] lost sense of
wholeness when faced with conﬂict is to create more adequate self-representations, a
process that requires an effort of synthesis and integration. Alternatively, most of us
simply get by with unexarnined inconsistency whenever possible” (19902270-271). This
process of synthesis and integration has its own timeline and will be covered more in the
following section, but engagement with some form of medicine or rehabilitation
contributes to gaining or inhibiting ontological security.

Sipho's story illustrates a change in his understanding through a disability identity
and gained accessibility. He is "just okay" with his disability. Sipho was embarrassed
about his blindness in the beginning. He was afraid and withdrawn, but though living
with it he became used to it. Rehabilitation gave him independence, learning to read
Braille and to use a cane strengthened him 2
S: It was very, it was different, because, I mean — and I will tell you something

Martha, after I lost sight I was, I was sort of embarrassed for people to see that

I’m blind now. You know, I wouldn’t like everybody to, especially the people

that, that knew me, the people that I grow with, you know. There was a little bit

of embarrassment that how are they going to look at me if I’m now blind. So
that’s why, that’s why I’m saying I was a little bit withdrawn, you know.

ML: Yeah.

143

ML:

ML:

ML:

I was afraid even to go out. You know going to the shops and so forth.

Did you grieve? Did you grieve at all, like a loss of your sight or anything like
this?

Um-hm. Yes, yes I did. I did. I did. I was, I mean when the doctor told me that
I can’t see anymore, I’m telling you, uh, it was very bad, if you can see, if you
could see me after that, after the doctor told me that I can’t see anymore, you
know.

Yeah.

Yeah. Yeah. But at any rate, what happened with that, I get used to it . . .
rehabilitation also helped a lot because I was taught how to read, how to go I
mean using a cane. I mean that independence.

Yeah.

Yeah. So it, it sort of strengthened you know my will power and conﬁdence, you
know. To say okay, I’m blind.

Rehabilitation was not so positive for all participants, delaying an understanding of their

situation. Sipho similarly sees change in South Africa generally, but like his blindness he

is just okay with the status. Another contributor to Sipho's understanding is that his

rehabilitation was through TABBA, the organization that grew out of a response to

SAN CB's neglect of service provision in the townships and Consolidated Circular No. 29

of 1966 which restricted SANCB's development of black blind people. TABBA was an

organization of and for the blind focusing on self-help rather than a service provision, but

operated in a way different ﬁ'om SHAP, which was self-help from more of an advocate

point of view. At the time of Sipho's disablement, TABBA would teach people

orientation and mobility skills from a blind perspective, and more so ﬁ'om a black blind

Sowetan perspective.

144

Being okay with a disability is one thing, naming oppression another. Contrast
the above story of rehabilitation with that of Francois. Francois is a trained activist in the
struggle against apartheid and was disabled in 1995. He relates:

F2 She [Francois' physical therapist] says like you move completely differently. She
said you used to move like a puppet, just trying to avoid the pain all the time like
you know move almost like in tiny movements. And then m . . . no, there,
there, I mean fuck - you know, I say I was released from hospital. Like released
from detention. I mean, you know. [laughs]

ML: 1 mean was it a similar feeling?
F: Exact [laughing] Absolutely!
ML: Was it a similar feeling?

F: It’s a completely similar feeling! No I mean fuck! At least in detention they
didn’t decide when I shat. [laughs] This is the one freedom you had! [laughs]
And they did this, because it suited their routine, of the hospital, your body’s
routine is to shit everyday. Their routine is to empty you out every two days. By
the time of having been in that place for ﬁve and a half months, I had to drink an
entire bottle of x-prep and eight senakots every night. I mean every night before
my emptying out. Because

ML: For the next morning.

F: Yeah. AndI got it from another medico, that came to one of their spinal days,
whatshisnarnes, about how to train your bowel. That your bowel is very trainable

M: Bowel programs.

F2 Yeah. Eat your bran and large volume enema of with a large volume fuck up.

But, once I’d taken my bran, and I did everything the guy said — you’re also not
supposed to do tea or coffee for some reason

ML: Water retaining, probably the caffeine."4

F: And uh . . . I’m saying I went to them with a medico they’d invited to this spinal
day and said listen, the dude says you’ve gotta shit everyday. They said no, no. It
will fuck up our routine. You can try that when you leave here. [laughs] And so

[laughs] I mean, you know, and so ja, the similarity of actually being scared, you
know.

 

’4 Caffeine is a diuretic, or draws water out, rather than retains water.

145

ML:

ML:

ML:

ML:

ML:

ML:

I mean surely when you’re in detention they, it’s a mind, it's a very controlling
thing.

Mmm.

It’s similar to rehab, isn’t it.

Yeah. I mean look, they switched off the lights. Um . . .
They what?

They switched off the lights.

Oh.

You know, the "lights off" time. Um, when you went to exercise with, and the
hospital wasn’t like that. I mean they decide when you eat, they serve you your

food. They decide when you have to go to gym, when you’re allowed to go and
play basketball.

[laughs] That seems to be like a little rite of passage they think is so important.

Mmm! Mmm, mmm. . . . You know the experience is the same, but I’m not
quite, I’m too much in trauma I mean I’m fuckin’, you know my folks said I was
like running this entire ward. You know, I was controlling everything that was
happening.

Yeah.

He [the doctor] said: they would call me when I was on call begging me to let
them give you more pain killers! And he said well, you didn’t manage to get me,
he said. I just told him —- simple. They didn’t believe that you’re trying your best.
Give him a saline injection. [laughs] So . . . what I discovered, I mean, okay, for
a while I was sheltered, because I was with my comrades, my family, a lot of, you
know - they would understand, have a general understanding of oppression, and,

and rights and equality and so on. And so I was sheltered for a while. I also had
my brain.

They were kind of advocates in a way.

Advocates, but supportive, like you know, ja, you know. "This is bullshit. Why
are people, you know people shouldn’t do that and you know, that’s wrong and" .
. . but . . . when you are being repressed, okay, people have a fuckin’ agenda on
you. And it’s a conscious agenda. When you’re being oppressed people are
fucking with you and they don’t even know it.

146

Francois' memories of detention and rehabilitation were "completely similar," and
sometimes it is difﬁcult to identify which experience he is referring to, detention or in-
hospital rehabilitation. In previous chapters I explained some of the histories of
institutions (Chapter Two), and discussed the impact of such institutions in the creation of
disability identity (Chapter Three and Chapter Four). Their relevance surfaces again in
relation to processes of appropriation, or possible readings of texts to broaden or
encourage a new mode of being. The text is not remade, but responded to (see Ricoeur
1981)
Ontological security can be inﬂuenced by other people, able-bodied or disabled.
In institutions such as the hospital where Francois and others spent so much time, able-
bodied ideology is perpetuated, and can even be encouraged because of a familiarity of
once being able-bodied. An able-bodied self may be preserved or exist in tension with
other self-components for years. Pieter provides an example of shifting selves in his
narrative, the torque of able-bodied and disabled identities surfacing and shifting. He
does not accept his disability, yet he is not trying to be able-bodied, existing somewhere
in between. His narrative is inconsistent with the interpretation of his wheelchair:
The ﬁrst few years I felt . . . awkward, sometimes embarrassed. And people saw
me the way I was. “You’re not changed?” and I said, “No — hang on a second,
this wheelchair can command attention.” This wheelchair can open doors. It’s
going to do it and I now exploit . . . the opportunities that this wheelchair allows
me. If people feel awkward in the chair that’s too bad. They must remain feeling
awkward. No, it’s not “too bad” — I would like them not to feel awkward — but, in
terms of a business negotiation tool, being in a wheelchair is a very strong tool.
In terms of a debt-collecting tool, it’s a very strong tool.

In this passage, Pieter, on the one hand conveys that his wheelchair gives him access and

advantage to participate in business exchanges, and on the other hand wants acceptance

147

regardless of the wheelchair. After long discussions about disability, I asked Pieter if he

would rather be able-bodied:

P2

ML:

P:

ML:

ML:

ML:

ML:

ML:

Would I rather be, would I rather be able-bodied? Yes.
Would you?

Clearly.

Why?

Do I — am I striving to be able-bodied? No. Would I rather be able-bodied? Yes
--—I want to be, I want to have the functions that I was born to have. I would like
to have retained them.

Mmm.

I was born to be able-bodied, but I was born able-bodied.

And so was 1.
I’ve lost some critical functions.

Sure.

Sure. I, I, if you gave me the choice to have them back . . . I’ll take them with
pleasure. I’ll take them without even blinking an eyelid — but, I live the life of a —
no, I don’t live the life of a quadriplegic ‘cause according to the book it’s
shocking rough, I don’t, I live a wonderful life. I . . . I have no problem. I, I live
a normal life.

You have an extraordinary life.

I, my disab — it’s doesn’t, I don’t consciously, I . . . look and say I’m, I’ve got a
disability. I seldom use the word “disabled” ‘cause it’s not a disablement here.
I’m not disabled. Um, and the day I become disabled — oh I dread that day. But I
live with this disability, but I, I often consciously don’t realize it. You just go
about your day and your wheelchair has just become part of me. It is my, my, my
mobility. Um, it’s detached occasionally to get into the boot and when I go for a
swim or whatever, but when I get out I need my chair, I’ll need to get to the next
place. Um, so . . . ja, I don’t consciously think about “okay, walk again, walk
again”. I don’t. It doesn’t cross my mind at all. It’s enough — today, tomorrow,
the next day. I will think a lot about that because I’m in a medical, spinal cord
injured conference.

148

ML:

ML:

ML:

ML:

ML:

ML:

You know what — disability - disability, disability is an attitude. Or
“disabled”, the word “disabled” — it’s actually just a person’s attitude. The able-
bodied person or mine. That able-bodied person could make me disabled or my
input. It’s not a tangible thing anymore.

It can come from within, or from, outside

Ja. It’s not a tangible thing anymore. The wheelchair doesn’t mean “oh,
disabled.” The wheelchair is, it’s the thing I use to get from A to B. Usually you
use your legs. Your hearing aids, that assists you to hear. That’s your assistive
device. It doesn’t mean that you’re hard of hearing. The hearing aid means you
can hear.

Well, no, it doesn’t — hearing aids aren’t that effective. I mean I, ja, I have the
auditory perception disorder. They’re not, you don’t hear like you used to.

Okay.
With the hearing aids.

Someone with hearing aids. I don’t say, “they’re deaf” or “they’re hard of
hearing.” I say they can hear. Someone with a cane, they can see.

But the moment I take this out, you see this is the part where I get so hung up on
is — you know I take these out before I even take off my shoes. I’m just more
comfortable, pretty much deaf.

Yeah.
You know. Urn, but . . . it’s a much deeper thing than that.

J a, ah, it can be, it can be very difficult. To become able-bodied again. There
would be lot of people that would, that wouldn’t allow me to, um. I don’t think
that’s such a good thing, um, to have gotten myself into that position.

I would really freak out if I, if I could hear like normal people. That would freak
me out and I don’t want it.

Ja, ja, no. I’m telling you, if you gave me the option, I will want to be able-
bodied. That’s it. But — it doesn’t mean I don’t want to be disabled. It’s, to have
a disability. 1, I don’t even notice my disability, ah, a lot of the time. I sometimes
I could . . . ja, ja, ja — I notice my personality. My personality, the way I behave,
is, I, I challenge myself on my behavior, more than anything else . . . than my
physical attributes. Why wouldn’t I remain calm, why didn’t I make that
decision? I’m changing the way I behave everyday, the decisions I make. And I
know a lot of people would just challenge their disability everyday. They don’t

149

have time for that, actually. Don’t have the time. And you know something

Martha, think about it, if maybe it’s because you’re so busy in the sector and so

am I, that we just get so deep into it and it keeps us away from challenging our,

our, our . . .

Disability and its associated meanings have multiplied. Pieter's narrative perhaps shifted
the most dynamically and dramatically of all the participants. He uses many of the
changed meanings of disability, disability as an attitude, for example, but must place
himself in multiple contexts. He is white, Afrikaner, quadriplegic, in the sector, and
other contexts. A disability identity surfaces when needed. His sense of self is informed
by a disability identity, and perhaps other identities and contexts, but generally remains
conﬂicted. In addition, people have been portrayed differently. There is a want or
preservation of able-bodied knowledge, but that knowledge is not always suitable or
accurate.

Learning the intimacy of ones disability is a progression for most people, where
disability's lessons are taught given his or her own timeline or learning curve. Though
the next chapter discusses the fusion of multiple identities and contexts, the point here is
to illustrate some of the ways participants are inﬂuenced by experience and can exist in
tension with previous knowledge. Semiotics can help sort out the qualities of experience
in narratives. De Certeau refers to 'style,’ a linguistic structure that exists on a symbolic
level (19842100). The symbolic level concerns "an individual's fundamental way of
being in the world" (do Certeau 19842100). The qualities of a symbol are unmotivated or
arbitrary, "having no obvious connection to the idea it represents except through
convention, what we take for granted" (Tomaselli 1996231). This is similar to Giddens'

use of ontology. In de Certeau's view, style connotes a singular (19842100). 'Use,' on the

other hand, deﬁnes social phenomena through communication as fact (de Certeau

150

19842100). While style and use both contribute to "ways of operating," style‘is processed
on symbolic terms and use refers to elements of a 'code' (de Certeau 19942100). Codes
are basically frameworks where signs make sense. Therefore, a style of use is a way of
being and a way of operating, according to de Certeau (1984: 100). I

Sipho came to terms with his blindness by relearning his environment and
relationships, he was disabled by being shot by security police while engaging in political
activity in the township on the eve of the 1976 Soweto uprising. He also participated in
the Truth and Reconciliation Commission (TRC) by giving a public testimony of his
experience, which to only an extent was healing. He had come to terms with his
blindness prior to his TRC experience, but understands that his lifecourse was greatly
changed. I asked Sipho if there has been change for people with disabilities since the
dispensation and the TRC. Here he refers to his TRC experience:

S: I don’t think that much has been, has changed. You know, disabled pe0ple were
not treated differently from other people, you know.

ML Mmm.
S: Yeah, we, in actual fact what the TRC has done, especially in the case of

reparations and so forth, it means they’ve just made an overall you know, an
overall

ML: Blanket, sort of. . .
S: Yeah, yeah. Kind of reparation you know?

ML: Ja.

S: They didn’t look at who is disabled in what way, what do you need, blahblahblah,

you know I mean it’s one of the things that I would say, the, the, the, the, the TRC
could not look at.

ML: Mmm. Mmm.

S2 Yeah. lmean . ..

151

ML:

ML:

ML:

ML:

ML:

ML:

ML:

ML:

ML:

Because they asked people, but people responded in many different ways about
what they thought they needed.

Yes. I mean, for me for instance I told them that I needed a big house, I told them
that I mean I would afford, I would afford a big house that okay my kids would
have, study rooms and so forth.

Yesss.

It was if I was normal, because I would work for that. It would be very easy for
me to get a job that I wanted.

Yeah. Yeah. You would have ﬁnished school, you would have

I had to ﬁnish school and do whatever what I wanted to. You know. I would
have a car, drive it myself, take my kids wherever I want. You know. I would
build them a house that they need, you know. You know. I mean such things.
I mean what did you see yourself doing?

Hmm?

What did you see yourself doing if you know if you hadn’t become, if you hadn’t
become blind?

I wanted to be a teacher.
Teacher.

Yes. I wanted to be a teacher. It was, I mean, I was a very good narrator, in
actual fact.

[chuckles] I can see that! Yeah!

[laughs] Yeah. So, I, you know even, even, even after, after, I mean during my
matric, we used to, we formed study groups where one would go and prepare
something.

Ah yes.
You know and then teach it, to, to, to, to the group, you know.

Yes.

They preferred me.

152

ML: [chuckles]

S: Yeah. I used to go and prepare — especially with history. I used to prepare

ML: Oh is that your subject?

S: Yeah, yeah, I was very good in history. Yes. Very, very good.

ML: Oh that’s great.

S: Yeah. And biology.

Sipho does not think the perceptions of people with disabilities have changed give the
wider events and changes in South Aﬁica. In his perspective, the TRC did not treat
people with disabilities differently, but perhaps should have. After more discussion about
South Aﬁica in general, he is just okay with how life has changed for everyone, like he is
okay with his blindness. His experience conveys a metonymy or evokes a whole through
connection (Wilden 19872198). Metonymy uses one signiﬁed to stand for another
signiﬁed in direct or close relation. Metonyms are based on indexical relationships
between the signﬁeds rather than symbolic and iconic qualities as with metaphors.
Another way to interpret this example is to say that Sipho's ways of knowing disability
and the political situation have become connected in a more or less equally weighted
manner.

For Francois, the experience of detention and rehabilitation are "completely
similar," and as noted above, seem the same experience. Of all the participants, I spent
the most time recording conversations with Francois. Hours of tape were recorded in
restaurants, coffeehouses, at my cottage, the commune where he lives, in cars on the way
to meetings, and other places. I have known Francois since 1998 and although he can be

very astute and cogent about what is happening to him in the personal-is-political sense,

153

he remains conﬂicted at times with his disability. There is more to his life story. He was
once asked to give a lecture to 120 occupational therapy students at Chris Hani
Baragwanath Hospital. He purposely leaves his crutches in his car. Once he is in front of
the Students he asks the lecturer in charge to go to his car to fetch them. While she is
gone he explains to the students that he was at a club the previous night and he needs a
volunteer. One student tiptoes to him and he instructs her to stand up with her arms out
in front of her. She does and he leaps out of his wheelchair and into her arms and says
"Last night I was dancing." After our laughter he tells me "And like, the initial miracle
shock comes over." He went on to explain to the class that for a long time it was the
occupational therapists and other rehabilitation specialists that inhibited him. "I said I
spent a whole year of my life mainly learning how to ultimately walk on one crutch.
Until I realised this is not my ambition in life." He said it is because the occupational
therapist did not teach him the proper way to use a chair that he can now dance. Through
this presentation a student whispered to a fellow student, "I wonder at what level his
[spinal] break is" as though he was not there. He responds:
I was facing the other way and I spun around and I stared at her. And I said, "Of
what possible use to you is that information?" And she drew herself up, put her
shoulders back, assumed a bit of height, and said, "It’s medical." And I thought
"You had your chance." And I was still thinking what I was going to say. And
then I just looked her up and down, and up and down and then while I’m thinking.

And then I just fastened on her breasts and said, "Yeah. It’s about as medical as
your bra size."

In one way, Francois understands how special disability knowledge and experience is, but
in another way, grieves. The following story of Francois' demonstrates to able-bodied

people that "help" can come in repressive forms.

154

ML:

ML:

ML:

ML:

ML:

. . . being left in the airplane for 20 minutes, and then somebody starts to push me
from the [wheel] chair, [so I] grabbed the guy's arm, twisted it, and the only judo
move I know, and dropped the fucker to the ﬂoor.

[laughs]

And I felt quite bad. This is quite an old guy. And then he’s lying there and he’s
just looking up at me, or kneeling there looking up at me and saying, “I was only
trying to help.” And you saw all the people, you know, crowded airport, all the
people looking you know, with a look on their face like “fucking ungrateful crip.”

Yeahhh.

But I had anticipated that. And I immediately yelled extremely loud “I thought I
was being mugged!”

[laughs]

This is somewhat energy consuming and could get dangerous. And I ﬁnally
worked out a way of doing this less violently. So I say I really appreciate that
you’re trying to help . . . but let me put it to you. If I saw that your zip was down
on your trousers and I said nothing to you, came right up to you - and then at this
point some action is needed - you lunge with your hand towards their crotch

[laughs]

and I just pulled it up [demonstrating the motion of zipping up].

[laughs]

The guy says, “No, no, no! No, no, no, no, no!” He was, “Mustn’t do that! No!”

1 said, “But, but I’m trying to help. I’m just trying to help.” He said, “No! No,
no, no!” I said, “But I want to help!”

F and ML: [laughs]

F:

He said, “No, no, no!”

F and ML: [laugh]

F2

They guy says, "What would you like me to do?" I say, “You must ask me ﬁrst.”
“Ahhhh!”

Much of Francois' narrative is devoted to such stories about making the able-bodied

understand. He is a great translator through the use of metonmy, stimulating the

155

indexical, or the existential relationship of the phenomenon depicted, the direct
connection of the signiﬁed. His narratives include many examples of metonymy,
evoking a whole thorough connection (see Wilden 19872198). To me, a disabled person,
Francois' stories have metonyms, but he translates them effectively to able-bodied people
who would have taken the meanings as metaphor. The essence of a metaphor is in
understanding experience in terms of another (Lakoff and Johnson 198025; see also
Chandler 2001). Metaphors express the unfamiliar or tenor in terms of the familiar, the
familiar being the vehicle with which to express the unfamiliar. Sipho’s narrative also
conveys metonymy, but applies it to himself and he has resolved some issues connected
to his disability to an extent. For Francois, this has not happened to such an extent.

Pieter's shifting narrative of being okay with his disability to wanting to be able-
bodied to not noticing his disability is an example of knowing his disability well, having
the 'style' perhaps, but he also has had experience of able-bodied knowledge that he
harnesses. The relatedness of style to things symbolic is not casual. De Certeau asserts
that the symbolic "connotes" a singular (1984: 100). Further, this is similar to Ewing's
ideas of shifting selves and illusion of wholeness. Metaphors express abstraction via
more well-deﬁned models or examples. In Pieter's case, the well-deﬁned model was
once stable, but through his experience of living with disability he is sorting this shaky
ground, over and over.

As will be explained in the next chapter, the narrations of other participants
conveyed a sense of greater ease with their disability than did Sipho, Francois, and Pieter.
The reasons for this are in the metonymic quality of their narratives. Metonyms stand for

things where they are regarded as belonging, in an ontological sense. As a trope, a

156

metonym is a word or phrase substituted for another in which it is closely related. An
example is "Soweto changed the political landscape." Soweto, referring to the 1976
uprising, substitutes the place for the event. Such substitutions are important when
looking at narratives as a whole. 15 the experience of disability expressed in terms of
something very closely related (metonym) or understood as resembling something else?
15 disability the same as the experience under apartheid, or is it similar (metaphor) to the
experience of apartheid? This is important because it demonstrates the reaches of
oppression, the ﬁght against repression, and the nature of meaning. Metonyms are said to
reference indexical relationships, where the connection is not arbitrary, but rather draws
attention to the thing to which it refers. An example is a weathervane indicating wind
direction (Tomaselli 1996:30). There is a cause and effect relationship. A metaphor
stimulates indexical and symbolic relationships. The symbolic relationship in metaphors
is not motivated, but arbitrary, and there is not obvious connection to the idea it
represents except through taken for granted convention (Tomaselli 1996231). These
modes of relationships emphasize the users' context. Although some semioticians may
argue that my application of semiotic tools is too general, not appropriate, or not
analytically correct, semiotics is nonetheless helpful. Whatever the application,
semiotics has helped me recognize the depths of meanings in narratives and their critical
practice.
WORLDS AND IDENTITY

Ontological security can be fostered in a variety of ways, such as Sipho's and

Francois' hospital and rehabilitation experiences. But inﬂuences to ontological security

can also lead to an embodied social suffering, and disability identity as a way out.

157

Participants' experiences in schools for the deaf provide a good example of institutions
wanting to "help," and even provide a lifelong cohort, "Deaf community," or alternative
family of sorts. Emma, who grew up in a school for the deaf, explains how she was
controlled by the hearing for most of her life. Once she graduated, she took a job in sign

language development, though she was taught signing was bad:

E2 My identity as a Deaf person was a bit shaky, at the time. I wasn’t sure about sign
language or when I worked there as a sign language development officer. And
my boss was a hearing person and he was the one to teach me. A hearing person,
to teach me, to accept myself. He always teased me because I tried very hard to
be like uh, how can I say, you know, accepting hearing culture, things like that.
And he taught me many things. And that is what brought out my Deaf identity.
And I have to thank him for that. At the time I didn’t really understand how and
what the connection was between sign language and English. I didn’t really
understand it and at the same time I did my Masters in linguistics so that’s howl
came to understand that sign language is a separate language from any spoken
language. So, and ja, that really brought out my identity.

ML: That was an empowering experience for you then.

E: Ja. In a way, ja. Ja. And I think people need to learn to accept themselves. I
grew up in the oralist mode and you know I was taken by my parents to speech
therapy, etcetera and then one day I just got a motto: I was born deaf, stayed deaf,
and I will die deaf. And I accepted that. So I’m a Deaf activist now. People look
at me and they think I’m funny or I’m this or that. You know in the past I’d get
so upset about it, but you know if they look at me ﬁrnny, it’s their problem. I’m
ﬁne with myself. Those who either grew up in the oral method or hard of hearing,
if they can just accept themselves. Then if they want to go into the deaf world, let
them go. If they want to go into the hearing world, then go.

Lindiwe had an experience similar to Emma's in that it took other people to
explain that sign language was her language. In addition, she travels hearing and deaf
worlds. An added component involves the reasons for her deaﬁress, but it became
secondary to her current feelings and objectives.

I did ask my mother and I asked some of my aunts why I was deaf because they

are very, . . . stories in the family. My auntie told me that I became deaf because I
was always very clever in hearing school. I was always number one in my class.

158

And my friends weren’t very clever, you know, they were perhaps number nine
and number ten. They [Lindiwe's aunties] believe that their mothers bewitched
me. So that I couldn’t be number one anymore. So they could take my place in
school. And you know they go to sangomas and people believe these kind of
things."5 My mother said you were just ill, you know. You fell ill, that’s it. So I
don’t know really what to believe. I’m Deaf, you see. 1 don’t need to investigate
the reason for it. I am Deaf. [ . . . ] I accept it and I’m happy to be Deaf. I have
a language which is sign language. I’m happy.
Like other people with disabilities, Deaf people understand accessibility is dependent
upon perceptions of the able-bodied. I asked Lindiwe and Justice if deafness is a
disability, as they are aware of the wider Deaf movement's ideas about deafness not being
a disability. Globally there is a movement for "Deaf culture." This means several things.
In the United States, the tensions within the Deaf community are based on whether
people embrace or reject sign language, and whether they identify themselves as Deaf,
deaf, hard of hearing, or hearing impaired. It has been my experience in the United
States that the Deaf community does not accept me as I am not prelingually deaf and sign
language is not my primary method of communication. In some Deaf communities I will
always be an outsider for these reasons. In South Africa, however, these distinctions
were not an issue. I would sign and learn local signs and signs in SASL. But people's
underlying treatment of me was based on experience of hearing loss and the feelings of
exclusion. The method of communication had little to do with acceptance, but the fact
that I embraced my disability was important. These issues were explicitly discussed, but

the Deaf in South Aﬁica have other deﬁning criteria. Lindiwe's response to whether

deafness is a disability:

1 think it's both. Um, a bit of both. I personally, if I'm with deaf people out there,
in meetings and when we have a conversations, I am not disabled. But once I am
with hearing people in the social environment, yes, I'm disabled. Because of the
communication barrier. But today, I have a sign language interpreter, I don't feel

 

4 . . . ,
5 A sangoma Is a dlvmer. There are also myangas, or healers.

159

disabled because we can all understand one another. So it's a bit of both: disabled
and what, not disabled. So I don't really know what answer to give you. I think a
bit of both.

Justice, who is involved with the deaf in Gauteng, says there are a variety of ideas about
deafness and disability. His response was that yes, deafness is a disability because of the
unfair treatment they experience, especially in terms of employment and education. For
many of the Deaf participants embracing sign language means claiming their deafness.
The situation of language medium for education, oralism, sign language, total
communication, or other methods, though, impacted the lives of the Deaf. Parents are
conﬂicted on how to handle their deaf children and often want them to go to oralist
schools because they do not know other methods exist, or they have difﬁculty coming to
terms with their child's deafness, wanting them to be productive adults through lip
reading and voicing. The control of hearing teachers and parents inculcated the idea that
sign language was bad. When Emma thinks of the deaf school experience she thinks of
oralism. Several issues collide in her narrative: hard of hearing and deaf distinctions,

and treatment by oralist teachers.

All my life when I grew up, it was in the school for the deaf. . . . And what I
have seen is that deaf or hard of hearing people who come to the school a little
late from a hearing school — the others would love teasing them. And that's
awful! I mean it's not nice the way in which they do that. If the deaf person
accepts sign language fully, then it's ﬁne. Same with the hard of hearing. Deaf
people seem to always assume that hard of hearing people are a little more
intelligent or clever because they can hear so they think that people who can hear
something should have more knowledge. . . . Then we look at the hard of hearing
children. The majority of them control the deaf. Because they speak well. The
teachers obviously sweet-talk them. And I see a very interesting thing: many hard
of hearing children are not bright. Their language skills are appalling. I mean
because they hear half and they see half signs, they don't really have a deﬁned
identity. Most of them, when they ﬁnish school, they can either choose whether
they want to go into the hearing world or into the deaf world. Some still just hang
around between the two. And those who choose to socialize with the deaf and be
part of the hearing world, I see they are ﬁne. Those who go into the hearing

160

world always tend to come back, whether it takes ten or twenty years they come
back . . . crawling. Those who hang around in between the two worlds certainly
do not belong in the Deaf world.

These "worlds," in adulthood, become more visible and deaf individuals have made
heavy decisions concerning their family and relationships. They often have to traverse
many realms. Justice explains that he lost his hearing at a young age and was taken to a
hospital with a creche for deaf children. I
J 2 So they took me there and I learned the basics of sign language. The following
year I moved to primary school for the deaf. From there it was a new
environment. But this is howl learned sign language. But, at home, there is no if

one family member who is ﬂuent in sign language. I can speak a bit with them,
sign and speak.

 

ML: But do you have almost like a larger family in Deaf culture?

J: I can say they’re both. Because I can move in both worlds, the hearing and the
deaf world.

Maneuvering the deaf and hearing worlds with more deft and security, however,
came with understanding sign language as their language. Justice explains that although
he did learn sign language earlier than many of his deaf peers, it was not until high school
that he deﬁned himself as Deaf. He saw that deaf people were being forced to choose
and study certain subjects and that they did not have a choice. Justice and his colleagues
came together to object to this and as a group still work towards Deaf rights as adults.
They are a group of friends with a bond based on teaching each other sign language and
questioning the authority of teachers, and later, deaf organizations. This group of black
Deaf people thinks of themselves as black Deaf intellectuals and has maintained a
network of friendship and advocacy.

Race is sorted in a unique way because of the nature of a somewhat closed

community or the "d/Deaf world."

161

ML:

Have things changed for deaf people since the end of apartheid?

I think, you know, yes. We, it has change, because I think our problem is that
many hearing parents of deaf people control them still. Like for example, again
you know at the time it was apartheid in this country. We had some against all
the black and white children got together, deaf children, and they used to
communicate although their parents would watch them and say, “You’re not
allowed to.” But I think many things have changed for the deaf in South Africa.

Similarly, Emma answered:

And:

My view is the Deaf community and the problems we encounter in terms of race
is inﬂuenced by the hearing community. I mean the deaf people come from all
different linguistic communities, right, so they come together in a school for the
deaf. And they'll say, "Ja, we're all deaf. We are the same." But still they have
that racism issue because of the inﬂuences from the outside. Many deaf people
won't agree with me and don't agree with me, but . . ..

My experience with my white English community was strongly oral, oralist
approach, so you know they had one sign for different things. I go to the black
community and I can see they have so many different signs. They’re illiterate!
But they use proper sign language, correct facial expressions, right syntax -
everything. But after apartheid, you know, the white community got on par with
that, especially the young kids, the children. Not the older deaf — please, not
them. Certainly not the white or the black deaf; but I look at the children and I
see they have really developed. But I think overall the teachers have never been
able to sign. It was the older deaf children in the school who would teach the
younger ones the signs. So that goes for all schools and have always. '

Defending the Deaf way becomes an exercise in self-representation and identity,

and at the same time is punctuated by the ever-present "race issue." The specialness of

the Deaf way is defended because of control by the hearing and their racist attitude. An

assumed wanting of unity or common understanding of deaf ways is inhibited by those in
control. Advocating language rights, the Deaf who were interviewed maintain that SASL

is an African language that does not just belong to the deaf, but to hearing people as well.

They do not just want a perceptual change in thinking about sign language, as some

162

"'-“.'- ‘_ .‘ .v't

 

alluded that the deaf are suspicious beings because of the nature of sign language being
primarily visual to the able-bodied, but they want SASL to belong to everybody.

DISCUSSION:
DO TYPE AND AGE MATTER?

In Chapter One I stressed that there is a need to include people with a variety of
ages of disability onset and disability types in this study. Now I state that the age of
onset and disability types do not factor heavily or at all in the South Aﬁican experience
of disability identity, at least among the participants in this study. This is vital.

Disability identity, as a social construct, is similar to other identities, such as gender and

 

ethnicity, and needs to given the same weight because all identities exist in relationship to
contemporary structures of power. Just as women were generally excluded from early
ethnography, the disabled were but continue to be ignored by anthropologists. I stressed
age of disability onset and disability type in the research design because those social
scientists focused on disability insist that disability type matters. That the age and type
does not ﬁgure signiﬁcantly to these participants or that they achieved the same insights
is exciting and signiﬁcant because it shows that those criteria do not limit disabled
peoples potential to understand disability socially and politically, and importantly, to act
collectively. It strengthens the argument that the political changes in South Aﬁica were
far reaching and that the movement could harness that discourse.

I problematize disability type because of the unequal treatment by social scientists
to disability type and their deﬁciency in possibly extending that argument to other
disability types or exploring whether disability could be an area of identity formation.
Deaﬁress has been intriguing to anthropologists, perhaps because of the ‘invisible’ nature

of the disability, the public but secretive beauty of signed languages, the close cohort

163

communities the deaf and their families create, or how the lack of hearing is socially
isolating. The ironic twist of anthropological studies on deafness is that it is not
elaborated in medical nor disability discourses. Deaf people are somehow sui generis.
Becker (1983) uses a life course perspective, interviewing old deaf people who
essentially created a cohort with fellow students from their deaf residential school and
maintaining those relationships throughout their lives. But what about those people who
are not prelingually deaf? Groce’s 1985 ethnography is the product of historical and
genetic research. For approximately 200 years a high prevalence of hereditary deafness
on the relatively isolated island of Martha’s Vineyard represented an important and
unique case: the deaf were not referred to as “the deaf”. Hearing people were bilingual in
English and Island sign language, adjusting the disabling environment for the integration
of deaf people and their families. One of Groce’s 80 year-old hearing informants
remembers her thoughts as a girl: “Oh, . . . those people weren’t handicapped. They were
just deaf” (Groce 198525). What about the people with other disabilities on Martha's
Vineyard at the time? Preston’s 1994 ethnography on CODAs is yet another perspective,
but he is more cunning in his abilities to ﬁnd a widely-held perception in American Deaf
communities that deafness is "not disabled."

Considering the age of disability onset was purposeful because of the differences
in experience with institutional and other loci of power. As I stated previously, people
disabled at a birth or a young age had critical life choices made for them and often
existed in segregated places and spaces. Those disabled as teenagers or adults had to
reevaluate their lives and conclude that segregated places were unacceptable. I was

concerned that perhaps people born with disabilities or disabled at an early age were

164

sheltered to the point of near total social seclusion. I was also concerned that people
disabled as teenagers or adults would dominate the leadership of the movement
organizations because of their previous able-bodied knowledge. I am relieved this is not

the case.

All; "'_.' a

 

165

CHAPTER SIX
FINDING ACCESSIBILITY, FINDING RECONCILIATION
This chapter, as the end of Part Two, concludes the discussion on selves and
identity. To summarize Chapter Four and Chapter Five, identity is a signifying practice,
but so too are selves. Disability identity, like other identities such as race and gender,
pursues political goals, and is based on an expanded deﬁnition of accessibility that
includes the removal of physical, social, economic, political, and other barriers for
meaningful participation in society. As I have often repeated, "South Africans have
multiple identities in common contexts, and common identities in multiple contexts"
(Thornton 19962150). Disability identity was initiated when the disability rights
movement began questioning and rejecting the individual perspective of disability as
tragedy, and engaged with the larger struggle for human rights, most prominently in the
revolutionary context of the early 19905. Participants came to understand their
disabilities through various identities and discourses. Their self or selves shift in
response to context, and can exist in tension or fusion, from one conveyed memory or
experience to another. In one sense, the struggle for disability identity is explained as no
different from, similar to, nothing to do with, or informed by the struggle against
apartheid. In another sense, a disabled identity is accepted into the shufﬂe of selves,
rejecting a dominant discourse of disability as Othering.
The previous chapter included excerpts of narratives where experience, self, and
identity surfaced and oscillated, where selves shifted and multiple identities were thought
of or referenced. Pieter's narratives were one such example. However, a greater number

of participants marry the experience of disability and other identities into a united

166

philosophy, where disability, regardless of the age of onset or disability type, brought not
only a new perspective, but a philosophy about society and how it should work. Only
two participants rejected their disability not because of a lack of understanding the
political nature of disability, but because accessibility was not embraced by people who
by example should. For the majority of the participants, however, this united or closely
related perspective of disability and other identities is something of a liberation
philosophy. This last section reiterates how social movements concerning disability can
engage other social forces, and argues that participation can foster identity formation.
The South Aﬁican disability rights movement pushed for the representation of disabled
people at a time of transition and democratization, when core concepts like citizenship
were redeﬁned. The link between accessibility and human rights is discussed below in
terms of the South Aﬁican Truth and Reconciliation Commission. The relationships of
participation, identity, selves, and philosophy are extended to discern how participants
made sense of human rights at various points in their narrative telling.
SELVES AND IDENTITY IN DISABILITY AND LIBERATION

While the disability rights movement participated in events leading to the
transition to democracy and put disability on the national agenda, one important event did
"nothing" for the disabled according to participants. The Truth and Reconciliation
Commission (TRC) provided a space for public memory and public discourse (Hamber
and Wilson 1999) with the added implications of displaying a public transfer of power
and justiﬁcation of a new moral order (Minow 2000). As a recovering of history for the
majority of people who suffered the apartheid regime, the efforts to make the TRC

hearing public was a partially healing event. Truth commissions, however, can have the

167

effect of a grand narrative effort to place atrocities in the past or as a monument of
history (F abri 1995; Minow 2000). Although narrative and memory are individually and
collectively important, the ardent desire for change through the mechanism of truth
commissions can mediate the realities of those victimized. Recalling Sipho's story from
the previous chapter, his experience was like everyone else's, but hampered the political
gravity.

The Human Rights Violations Committee (HRVC; one of the three TRC
committees) hearings were often televised or broadcast on radio and captured
representations of the disabled through this process. As an example of large-scale official
recording of human rights violations, the public broadcast of HRVC hearings was also a
display of victims and survivors. What may not be emphasized enough is that apartheid
created a disabled population. Acknowledging pain and loss of social actors is a political
act (Ramphele 19972101; see also Das 1997 and 2000) and although the TRC was
successful in this to an extent, the disabled still seem portrayed as belonging to a welfare
sector. There are many potential outcomes of the portrayal of the disabled in countries in
conﬂict or transition. Soldiers disabled in Nicaragua assumed new roles due to their
political importance as symbols of the revolution (Bruun 19952197). Sandinista war
heroes and disabled Contra soldiers ultimately became symbols and were used in terms of
propaganda yet they gained new status and further normalized the disabled body (Bruun
1995). The unit of government in Afghanistan responsible for the disabled is the
Ministry of Martyrs and Disabled. People with physical disabilities from political and
armed conﬂict gained attention and a medical professional approach to disability was

aggressively perused for the war injured at the expense of provisions for other disabled

168

 

people (Ministry of Martyrs and Disabled 2003). Overwhelmingly, participants believe
that the TRC had nothing to do with disability. In one way, the testimonies of the
disabled in the TRC perpetuate an individual model of disability as tragedy. Participants
responded that they, themselves, needed to be the ones who educate and demonstrate
through daily practice what disability is all about.

Again, accessibility to the disabled participants in this study means acceptance,
inclusion, and fulﬁllment of rights. But accessibility also weighed heavily in the
responses of a few participants who expressed a desire to be able-bodied. This scenario
was described with stories that would break off into other topics. For example, Queen
described a play she saw and relates it to her experience, connecting past and present

emotions to convey the tenor of the similarities:

Q: You know, that is a play which tells you of the ordinary person that was in the
struggle. Because somehow now you know some of us are not even recognised
because we didn’t go to exile or we were not jailed or what have you, but as far as
you were black you were part of the struggle because they were also for battles
you were ﬁghting. As I’m telling you now that I was raided at two o‘clock in the
morning simply because I was applying for a visa to have Zimbabwe — a disabled
Zimbabwean to come to South Africa! And I, you know, the, as a black person I
started exactly as any other black person with my disability. But that doesn’t
mean much because you know I didn’t march, I didn’t go and to i-toyi and, that is
the play in which is actually exposing some such things so . . .."

ML: But you still felt part of the struggle.

Q: I didn’t have an option! I was black! I didn’t have an option. I was black. I slept
on a dog mattress in a white house you know, and a dog blanket next to a cold
stove so you realize that these people weren’t even that well off and their dog
could go into the bedroom with them. And it was because of my pigmentation.

ML: Yeah, yeah.

Q: You see.

 

“Toyi-toyi is a protest dance and was often practiced during marches and demonstrations during the 19805.
Van Schalkwyk's (1994) research found that toyi-toying is a reclaiming of the right to occupy public space
and a way to participate in civil society.

169

Queen does not believe much has changed in South Africa since the end of apartheid.
Her blindness should not have mattered, in her opinion, to the resistance movement. Her
past experiences in trying to introduce TABBA and engage with some resistance leaders
during the 19705 were not taken seriously. Further, she was caught up in the disability
politics and organizational tensions when SHAP was in the process of deﬁning and
proposing how DPSA should work.

Ben is another participant whose frustrations with accessibility make him wish to
be able-bodied. Although shot by security police in Soweto in the 19805, he does not see
his disability as political, but something that "more or less just happened," and that was a
fact of life in the township. Ben says he is living "with it, I'm understanding it," about his
disability. Although he is successful, he says he has internalized these feelings of
displacement and that his success as a person with a disability is not acceptance. Both
Queen and Ben are certainly aware of their disabilities, and reject their perceived and real
unfair treatment. This, indeed, was an illusion of wholeness (Ewing 1990) to me. I was
very surprised to see a rejection of disability despite their long-terrn involvement and
good arguments on repression and oppression. On reading and re-reading narratives and
ﬁeldnotes, I did ﬁnd that their selves shifted in unique ways. The passage of Queen's
(above) locates or roots her rejection of her own disability to the unfairness and injustices
of being black and seeing little change in the country.

As meaning can change, it can also linger or grasp, have temporary uses or be
recycled. In Chapter Three I indicated that DPSA was a message, itself, of the disability
rights movement and that participants have held on to that message and participants are

now critical of that organization because although rights have been won, the attachment

170

of message and medium remains and the organization is looked to for action. The life of
that meaning remains and has not changed dramatically. Another example of a meaning
being used, maintained, recycled, or differently applied is with the DEAF SA march, held
on February 7, 2003 in all provinces. Their demands were for SASL to be recognized
and implemented as an official language in the education of deaf students, that SASL
become the ofﬁcial medium of instruction in all schools for the deaf, that all teachers of
the Deaf receive proper SASL training, and that the Department of Education accept
responsibility for developing SASL learning materials. The organizers in each province
delivered these demands in a memorandum to their respective Department of Education.
Education in SASL is believed to be a human right to Deaf South Africans. Some
participants in the march made the connection of the 1976 Soweto uprising, carrying
boards that said "Forced Oral Medium of Instruction Equals Soweto Uprising." This
comparison was readily understood. Deaf people and people with other disabilities
attended this march, myself included.

Meanings can also become secondary to experience and gained knowledge, being
replaced by new understanding. The narratives of people who accept their disability did
not devote much time to their early experiences of disability in their lives, regardless of
disability type or age of onset. These aspects became secondary to an understanding or
meaning of rights and accessibility, or included disability in their inventory of selves in a
dialectical and positive way. Lindiwe’s example, included in the previous chapter, told
how her family took her to a sangoma, and how her mother said she became ill. But
though involvement with the Deaf community and understanding sign language most of

all she is able to say, "I’m Deaf, you see. I don’t need to investigate the reason for it. [ . .

171

. ] I accept it and I’m happy to be Deaf. I have a language which is sign language. I’m
happy." Although selves and identities are signifying practices, this example shows how
identity is a socio-emotional need (Shaw 1994) and politically motivated. Selves, in their
narratives, were not an illusion of wholeness but a comprehensive understanding.
Inaccessibility is a source of frustration, but becomes empowering for self-representation.
Thandi says, "But being a disabled person has taught me many things. To be assertive, to
know who I am and to know what I want in life, you know." Another reported:

Actually, I always say to people you know I realized something. Before I became

disabled, I wasn't so fast in learning things but when I became a person with a, I

learned a lot of things, I learned a lot of you know environment, people, structure,

and whatever, and whatever.

Further, those who include disability in their selves used it positively to reinforce
their personhood with little doubt. Some participants equated their disability with their
gender. For example they agreed that they were as much disabled as they were female.
Participants also compared disability identity both implicitly and explicitly to tenets of
Black Consciousness. Tisetso, for example, had a quote from Steven Biko printed on a
sheet of paper and taped to her wall. It says, "The basic tenet of Black Consciousness is
that Blacks must reject value systems that reduce their dignity." I asked her if the
disabled are ﬁnding a voice through such inﬂuences. Her response was:

Yeah, I mean to a large extent it’s about identifying with the philosophy. Um . . .

and I think . . . for me it’s more for as a black person, um, than a disabled person I

think that maybe to, to identify with it. And certainly the principle that he, he

talks about certainly applied to you know, to any grouping that is you know is
under an oppressive system which is what disability is all about. I think that’s
how I separated you know when I say um identifying with it as a black person
that’s under South Aﬁica and racial discrimination but as a disabled person it’s
more broad and general as you were saying anywhere in the world. Because
anywhere in the world disabled people are oppressed you know so it is an

oppressive system, but it need not only be just for South Aﬁicans, um system with
its history. It’s a more generous thing.

172

Adeela, active in both the women's movement and the disability rights movement, takes
the same philOSOphy and applies it to her life:
Firstly at the individual level in terms of how do, how do I engage or how do I
allow society to engage me as a disabled woman, is that ﬁrstly I don't allow
society or any individual in society to engage me in an undermining way. I will
not tolerate that. Um, and people pick that up, that you know, that they're not
going to get anywhere of trying to undermine me anyway. Um and you've
constantly got to assert yourself. You know and let them know this is what's
acceptable and this is what's not acceptable. "
This is not metaphorical. Disability and gender are a united entity in this passage.
Tisetso's passage about Black Consciousness is not as metaphorical but makes a close
comparison to race, disability, and inequalities experienced globally. The following
passage has a metonymic quality, where one word or phrase is substituted for another to
which it is closely related.
Never say I'll never sit in a wheelchair. No, I'm not going to put a ramp. Provide.
It's something which has to be there. We do exist and we've been in existence, it's
just that the previous eh government did not recognize us. We've got abilities.
The experience of being black and disabled is closely related in the sentence "We do exist
and we've been in existence, it's just that the previous government did not recognize us."
The message conveyed is that both black people and disabled people were not recognized
by the apartheid government. I remember when I was ﬁrst in South Africa and never
heard people say the word "apartheid." It was conveyed as "then," "before," "the
previous government," "before the dispensation," "used to be," or "before elections."
That was in 1998. In 2000, a few people spoke the word. During my last trip I realized

more people were saying the word in conversations: "My daughter was born during

apartheid," or "I lived in Orlando East during apartheid."

173

Adella describes such processes of appropriation and making new meaning
elegantly and succinctly. Adella and other participants have gained a holistic
understanding through such experience that is empowering and accountable to acting in a
rights-based democracy.

As South Africans you know we've got to unlearn our own racism, and everything

that's been taught in terms of our difference and looking at difference ﬁrst and

classifying and judging people on the basis of their difference. So it's about you
know you've got to de-label yourself, right, and de-label how you view the world
is going, and so on. So on that level, the whole issue around valuing and
managing diversity is an important issue. And looking back at our achievements
over these ten years, uh we're probably the country that has achieved the greatest
amount of progress in terms of disability over the shortest period of time. And
you know it's very progressive stuff ranging from our constitution which is
considered the most progressive in the world, to a range of legislation. We've got

a very enabling environment here that you know outlaws discrimination on the

basis of disability.

DISCUSSION:
ACHIEVING DIGNITY

There are participants in this section whose stories appears elsewhere in this
dissertation, speciﬁcally in Chapter Four. There, they were telling stories about their
ﬁght for recognition and voicing their frustrations of being treated as objects.

Participants questioned assumptions of a different mental capacity, as in their ability to
learn English or calculate math equations, and such queries are essentially demonstrations
of signiﬁed meanings that are appropriations or remaking of texts also critical to the
success of a rights-based, democratic post-apartheid South Africa. In Chapter Four,
participants were telling stories with a beginning and end about an experience or
confrontation. But the portions of narratives in this chapter were taken from points in the

narratives where participants gave a comprehensive statement on their status as disabled.

174

It was a story of the lesson learned, or the philosophy drawn from experience. These
stories have no end, but are sustaining in their promise for change.

As I stated in Chapter One, anthropologists are concerned with meanings.
Conﬂict takes place in meanings (Escobar 19922408; citing Melucci 1988) and
movements take place in ﬁelds of meaning (Burdick 19952369). The organizational and
strategic components of social movement organizations essentially confront social forces.
It cannot be assumed that a given social group develops an identity ﬁrst and then engages
in strategic action (Canel 19972202). It was through the process of interaction with other
social forces that developed disability identity, where participants became involved in the
appropriation of new meaning. This everyday practice, where the examples in Chapter
Four are but a few, sustains the movement. It is achieved dignity and an exercise of

human rights.

175

PART HI

CHAPTER SEVEN
CONCLUSION

One of the goals of this dissertation was to show how disability is organized and
deﬁned in the context of democratization and human rights in South Africa, a
purposefully broad topic. South Africans are celebrating eleven years of democracy at
the time of writing. The disability rights movement, by engaging with the AN C, worked
and continues to works for the absorption of the disabled into the discourse of democracy
in the new South Africa. Indeed, the end of apartheid was instrumental in the
introduction and implementation of a social model of disability. Both the OSDP and
INDS work toward the implementation of the social model of disability. In practice,
however, there is a real concern that disability is last on the national agenda. That is,
although race targets are coming close to being met, gender lags behind and disability
may become addressed if any energy or resources are left. According to a recent report,
83 percent of government departments do not have disability policies and those that were
found to integrate or include the disabled were not translatable to strategies or programs
that seek to integrate the disabled into society (Research Dynamics South Aﬁica and
Ofﬁce on the Status of Disabled Persons 20002vi). This is but one problem identiﬁed in
the disability sector and movement. Neglect of disability in government departments
becomes personal and contributes to answering both the above goal and the second goal
of this dissertation: identifying and describing the multiple ways disabled South Aﬁicans

identify with their disability toward an understanding of difference or political identity.

176

Apartheid created a difference in the experiences of disability. Where the white
experience of disability had been inﬂuenced by medicine and welfare through special
schools and institutions sponsored by the state, the black experience of disability was and
is characterized through being the target of structural violence, including the maintenance
of poverty. What they have in common is living under able-bodied ideology. But the
process of understanding disability socially and politically is dependent on multiple
factors for these participants. Chapter Three described how the weakened apartheid state
and the disability rights movement pursued engagement with the ANC, helping elevate
disability as difference. Though social movements can provide a space for the practices
of the movement's message, identity can develop in the process of interaction with other
social forces (Canel 19972202). Although many of the movement's goals were achieved,
the meaning of disability as a social and political identity needs to continue at the level of
social integration (Canel 19972199). Including disability in the new South African
constitution, government representation in the form of disabled members of parliament,
the Office on the Status of Disabled Persons located in the Ofﬁce of the Presidency, and
the White Paper on an Integrated National Disability Strategy are achieved goals, but
widespread understanding of disability as seen by disability activists is not fully
actualized. This is evidenced by the continued struggle of disabled activists, the
descriptions of two types of disability in the township (those who participate in society
and those who live behind closed doors), lifecourse achievements expressed as desired
for all disabled persons rather than common experience, the worlds of disability, and

struggles in everyday life. Therefore, while medicine does play a role in the lives of the

177

disabled, experiences with the institution can be empowering or inhibiting (as described
in Chapter Five), and it is only one contributor to participants' understanding of disability.

The persistent and exigent theme of accessibility in the narratives of participants
points to the ways the disabled are subjugated in multiple ways. Accessibility, as
demonstrated in Chapter Three and Chapter Four, comes to mean acceptance, inclusion,
and fulﬁllment of rights. Chapter Five and Chapter Six introduced 'self’ and ﬁnding the
nature of selves, whether disability shifted or existed in tension with other identities, was
also critical to wider social change. Such research is better geared to assess the potential
impacts of implementing a social model of disability, a goal of the global disability rights
movement. Disabled South Africans continue to learn about their disability. On the one
hand, the disabled manage their disability in ways similar to that of other identities. On
the other hand, they ﬁght with that knowledge and experience or it exists in tension and
secondary or inferior to other identities held.

This dissertation makes ﬁve contributions and they are discussed below. The ﬁrst
contribution is the recognition of disability as a potential site for identity creation.
Medical anthropology is appraised in terms of the potential to misrepresent or alienate
people with disabilities. Second, although a social suffering perspective attempts to
bridge issues in medical anthropology and psychological anthropology, a feature I
welcome, it was not appropriate for this research without signiﬁcant changes. The
danger of the social suffering perspective is in its assumption of repression in the
aftermath of social forces. The participants in this study are or have been actively
engaged in a movement, creating and maintaining spaces for new meaning to their

realities and pushing for change. This discussion is presented below under Social

178

Suﬂering vs. Social Justice. Third, The Body/Embodiment Debate, provides a family
history of sorts to the social suffering perspective. Disability identity questions whether
either medical anthropology or psychological anthropology is needed for the study of
disability, and the debate is given below. Fourth, the importance of semiotics in the
analysis of this study contributes to a modiﬁed social suffering approach. I used
conceptual tools such as metonymy and appropriation to aid in understanding the nature
of meaning which was critical to this work. Fifth, disability is a human rights issue and
every research endeavor must include people with disabilities in their research.
Medical Anthropology and Identity

The standard dichotomy of ‘illness’ and ‘disease’ ignores disability. Indeed, if
“Disease refers to a malfunction of biological and/or psychological processes, while the
term illness refers to the psychosocial experience and meaning of perceived disease”
(Kleinman 1980272; original emphasis), disability is something else. Words like
‘chronic’ and ‘permanent,’ and phrases like ‘the outcome of illness’ and ‘those who don’t
get well’ are used to describe disability (Estroff 1993). Disability has been left behind
because it ﬁts into the far reaches of illness experience yet is qualitatively different to the
extent of exclusion from this axiom. Perhaps people with disabilities do not ﬁt well into
a research design, foiling the projection of data about them to the general population.

The majority of medical anthropologists focusing on ‘illness’ fail to recognize
that people in their research sample may not see themselves as such, but rather consider
themselves ‘disabled’ and part of a much wider community of disabled people. For
example, people identiﬁed with multiple sclerosis may be labeled as ‘ill’ by medical

professionals, but to themselves and to segments of the disabled community they are

179

often viewed as ‘disabled.’ Regardless, of whether or not the people they interview are
comfortable with this identity, medical anthropologists must recognize the potential for
chronicity [deﬁned by Estroff(1993) as the merging of identity with diagnosis] or
adherence to a disability identity. Perhaps a lot of people with disabilities exist in
between these categories.

In another respect, medical anthropology concerns itself with health and well-
being. In the 19905 medical anthropologists began in more earnest to investigate the
components of well-being. Bolton (1995) has found misuse in explanatory models uSed
by medical anthropologists. He maintains that the products for analyses from such
methods illustrate an over-reliance on text for interpretation to the extent that they discard
the emotional and cognitive rules involved in the process and production of such
ethnographic data. Braithwaite (1990) takes this argument a step further by locating the
strategies involved by people with emergent disabilities and identifying how they
navigate able-bodied discourse as a rich communicative space. As opposed to the mere
description of symptoms and the nature of the doctor-patient relationship, Taussig’s
(1980) example is one of how medicine can jeopardize patient self-understanding.
Helander (1995) accurately frnds how anthropologists misrepresent people with
disabilities. He critically explains that disabilities cannot be treated generally and their
deﬁnitions become largely useless because they focus on a single or limited type of
disability (such as disﬁgurement or paralysis). The experiences and personal meanings
of disability in everyday life were better served by seeing disability as a potential site for
identity formation. In the discussion to Chapter Five, I stated that the age and type did

not ﬁgure signiﬁcantly to participants and that they achieved the same insights. This is

180

exciting and signiﬁcant because it shows that those criteria do not limit disabled peoples
potential to understand disability socially and politically, and importantly, to act
collectively. The corporeal bantustan was not successful in keeping these participants
down and dependent.

Social Suﬁ’ering vs. Social Struggle: Everyday Subjugation and Collective Action

This dissertation also challenges the social suffering perspective in anthropology.

"Everyday violence" (cf. Scheper-Hughes 1992) has spurred interest in the workings of
violence and has evolved into the study of "social suffering" (cf. Das 2000; Kleinman,
Das, Lock 1996, 1997). Social suffering as an approach attempts to collapse the
dichotomies of individual and social levels of analysis, representation and experience,
and identiﬁes the connectivity of state and institutional power to everyday life. In this
way, suffering can be seen as at once collective and individual. Farmer (1992, 1997),
Ramphele (1997), Scheper-Hughes (1992, 1998), and Taussig (1987), for example,
understand violence and social suffering as embodied. They examine violence as a
complex construct with contradictory, ambiguous, unpredictable, and unexpected aspects.
The social suffering perspective, inspired by everyday accounts of subjugation and with
gained experiences by anthropologists using a social suffering perspective, contributes to
the literature on social justice, but in a peculiar way. As both critical and interpretive, a
social suffering perspective could use the concept of hegemony to explain social
suffering and highlight how people may not be able to advocate for change (e. g. Grarnsci
1971; Williams 1977, 1980). In this way, 'embodiement' seems similar to hegemony.
But, appropriation of symbols that once oppressed can become "co-opted in rebellion as a

source of identity," as Nordstrom and Martin note (199226; West 1988223; Williams

181

1980240). Nordstrom and Martin observe that the concept of hegemony is "a more ﬂuid
vision of the way power interacts with culture, not a simplistic model in which economic
elites plot to control their world" (199226). Further, inﬂuenced by Foucaultian concepts
of power and discourse, ethnographies became a collection of micro-analyses of power
and everyday resistance, and, perceived as unorganized or non-collective, the
anthropologist overlooking collective struggles for social justice (Burdick 19952361). In
other words:

When resistance is conﬁned to the level of cultural expression the task of

specifying the nature and form of oppression is often left to the anthropologist -

who, inspired with a cultural spirit — discerns the hidden meaning behind the
inforrnant's statements and practices. In contrast, when informants begin to
organize consciously, they specify their own understanding of structures of
domination and employ tactics that respond to local circumstances. [Nordstrom

and Martin 199227]

A social suffering perspective that attempts to draw a circle around experiences
and expressions in terms of discourse and calls it embodiment misses or is not
appropriate to the realities of participants in this study because participants are engaged
in a process of politicizing a disability identity in the context of transition,
democratization, and post-apartheid South Aﬁica. Theories of embodiment focus on how
bodily experience can mediate the ways in which people grasp and understand objects
and sites of meaning production (Csordas 1990), hence an emphasis on discourse. Given
this emphasis on meaning production, theories of embodiment further study of culture
and the self (Csordas 1990). Theories of embodiment emphasize the phenomenology of
perception, ontology, and semiotics (Merleau-Ponty 1962) as tools to frnd meaning and

change in meaning. But theories of embodiment, to me, and for use in a social suffering

perspective, come to emphasize the phenomenology of perception, ontology, and

182

semiotics as tools to ﬁnd meaning and change in meaning perhaps resulting from not
only the boay but also wider sociocultural forces.

The lens of social suffering is one way of negotiating the body—embodiment
debate (discussed below). Each approach involves basing analyses in empirical research,
yet beginning with different units of analysis. Anthropologists using a social suffering
perspective seem to focus on the ground of embodiment, using semiotics implicitly.
Nevertheless, social suffering as an approach no longer seems to be in a liminal space in
between medical and psychological, but may become the property of one or the other as
anthropologists redeﬁne, write, and publish.

The Body/Embodiment Debate

Anthropologists utilizing a social suffering approach have been inﬂuenced by
their backgrounds in medical anthropology and psychological anthropology. In recent
years, distinguishing between the two sub-disciplines has become difficult for several
reasons. One reason for such overlap is the common aims to represent human suffering
as it pertains to the body, experience, and inequality. Some of this conﬁrsion is also
owed to the far-reaching impact of Western Cartesian science on the development of each
sub-discipline (Lock and Scheper-Hughes 1990; Suérez-Orozco 1994). I agree with
Good (19922190) in his observation of the irony of anthropologists denying their support
to the mind-body dichotomy yet using “different forms of analysis of conditions such as
diabetes, on the one hand, and schizophrenia or depression, on the other.” The works of
both medical anthropology and psychological anthropology are successful in illustrating
power, coercion, domination, and structural inequalities; however, each sub-discipline

seems to hold onto different strands of "interpretation." It seems medical anthropologists

183

have spent more effort in developing theories of the body while psychological
anthropologists have focused on embodiment. Lock and Scheper-Hughes (in various
combinations and publications) and Good (1994) problematize the body and bodies and
begin to ﬁnd meaning. Some of these ‘bodies’ become conceptual lenses for
understanding experience (the body—self of the individual body, the social body as a
natural symbol) and have made contributions to interpretive anthropology (DiGiacomo
1992). Theories of embodiment are qualitatively different in that they focus on how
bodily experience can mediate the ways in which people grasp and understand objects
and sites of meaning production (Csordas 1990). Csordas' paradigm of embodiment is
based in psychological anthropology and leans strongly in the direction of
phenemonology (199025). “This approach to embodiment begins from the
methodological postulate that the body is not an object to be studied in relation to culture,
but is to be considered as the subject of culture, or in other words as the existential
ground of culture” (Csordas 199025). Given this emphasis on meaning production,
theories of embodiment further study of culture and the self (Csordas 1990). Theories of
embodiment emphasize the phenomenology of perception, ontology, and semiotics
(Merleau-Ponty 1962) as tools to ﬁnd meaning and change in meaning, perhaps resulting
from not only the body but also wider sociocultural forces.

The common footing for these anthropological interests may be with a critical-
interpretive approach, but epistemological underpinnings of body and body knowledge
are generally split by sub-discipline or teeter in between in a creative space. This
distinction goes beyond representation of the body: this distinction forges different

theories of sociocultural dimensions of power. An approach incorporating semiotics can

184

uncover how meaning, experience, and emotion can be inseparable from hegemony in not
owning the narratives of informants but rather through the wider discursive practice.
This wider discursive space is vital because although the social context of memory and
experience outweighs narrative telling, it is through narrative that meanings can be seen
as appropriated. As a way of generating meaning, memories are grounded in response to
historical contexts and become incorporated into ways of knowing.
Conceptual Tools in Semiotics

With a more developed understanding of semiotics, anthropologists using a social
suffering perspective can more accurately use semiotic conventions or tropes beyond
'metaphor.’ Lock and Scheper-Hughes deﬁne the task of critical-interpretive medical
anthropology as "ﬁrst, to describe the variety of metaphorical (conscious and
unconscious) about the body and associated narratives and then to show the social,
political and individual uses to which these conceptions are applied in practice"
(1990249-50). Although social suffering has expanded on a critical-interpretive approach,
anthropologists sometimes use metaphor in its literary sense, to get to the tenor of
seemingly unrelated descriptions of reality, the unfamiliar expressed in terms of the
familiar. I used this writing convention in Chapter Two, with corporeal bantustans. In
Chapter Five and Chapter Six I analyzed narratives with attention to modes of
relationships, or how participants characterized their experience of disability. In these
ways semiotics can be used more for analysis than writing, being more accurate to

participant's interpretations than to those of the anthropologist.

185

Research and Human Rights

Given the above explanations for greater attention to identity I am also inﬂuenced
by an African perspective to human rights. As stated in the introduction, anthropologists
have contributed to the efforts of human rights through cross-cultural research and
monitoring (Messer 19932221). I, too, am dedicated to the exploration and adoption of an
inclusive concept of rights that, as Farmer suggests (2005), conceptualizes pathologies of
power. But why do anthropologists continue to ignore disability? Disability and
disability identity has the potential to become its own sub-discipline in anthropology,
rather than a subsection of medical anthropology. Look what it has to offer — an abused
and underrepresented minority that is exotic and ‘other’! Understanding the sliding scale
of illness and disability avoids the trap of anthropologists using Western
conceptualizations of institutionalized or informal healing systems and focuses more on
experience, change, and knowledge. Accessibility is, after all, what all identities demand.
Better yet, disability must be included in any human research endeavor.

In the "soft sciences," disability is slowly being adopted in history, sociology,
media studies, literature, and the arts as a legitimate topic of study. Disability studies as a
ﬁeld has contributed to this growth with the establishment of an organization (Society for
Disability Studies), academic programs and courses, journals and other publications, and
conferences. There needs, however, to be a stronger push for disability's inclusion into
the "hard sciences," (e. g., statistics, biology, engineering, and the like) to integrate
disability and lessons of difference into their theories and practice. Disability, when
conceptualized as outside "normal," has played a role in teaching about physiological

difference, but it needs to be transferred into humanistic reality, perhaps to ﬁnd answers

186

to why there is such variation in human biology rather than to the ends of “ﬁxing”
disabled bodies. Research in sciences such as economics, business, and biology can
include disability. Simi Linton, in her book Claiming Disability (1998), makes an
observation that lives at the forefront of my mind as I critique any research ever since I
ﬁrst read it. To paraphrase, how can researchers whose studies do not include people
with disabilities in their samples claim that their ﬁndings are generalizable to the wider
population, especially when people with disabilities are often thought of as the world's
largest minority group (Linton 1998)? Instructors and professors of university courses on
sampling, research design, or quantitative methods can teach students entering the
research ﬁeld to include disabled people, or students using pre-existing data sets to
statistically equalize the balance. Or would this skew data too much? Including a
representative sample of disabled people in research sampling might challenge some
theories in science that researchers may not be willing to give up. As a human rights
issue, efforts need to be made by researchers not to perpetuate able-bodied ideology.
GLOBAL DISABILITY RIGHTS

Disability is not acted upon as a political identity in the wider international
disability rights movement. The international disability rights movement is the voice of
the North and takes a narrow approach to social change. It also fails to engage with big
development and civil society in meaningful ways. This is recognizable to disabled
South Aﬁicans active in their movement as they have experience of a revolutionary
context in which to direct change. They have been able to engage in dominant discourse,
evidenced through their perusal of political parties in the early 19905, participation in

constitutional negotiations (CODESA), the RDP, and other landmarks to democracy.

187

Two current developments illustrate how disability works globally. Although it was off
to a weak start, the African Decade of Persons with Disabilities (1999-2009) started as an
initiative of the Aﬁican Union and is currently in the process of making the movement
accountable to all people with disabilities and the conditions that both perpetuate poverty
and inhibit growth (Aﬁican Union N.d.). The goal is to facilitate DPOs and government
in'an inclusive dialogue for the betterment of civil society, one that is inclusive of the
disabled. Participants in the African Decade recognize that the essential infrastructure,
DPOs and development organizations, already exists, but is not used to maximize
political power. Another development, the proposed UN Convention on a
Comprehensive and Integral Convention to Promote and Protect the Rights and Dignity
of Persons with Disability, has been receiving a stimulated discussion from Africa as a
continent. The United Nations General Assembly, resolution 56/168 of 19 December
2001, established an Ad Hoc Committee
to consider proposals for a comprehensive and integral international convention to
promote and protect the rights and dignity of persons with disabilities, based on
the holistic approach in the work done in the ﬁelds of social development, human
rights and non-discrimination and taking into account the recommendations of the
Commission on Human Rights and the Commission for Social Development.
[United Nations 20012electronic document]
The Aﬁican Regional Consultative Conference held in Johannesburg in May 2003‘ was a
meeting of representatives of the disability sectors of various Aﬁican countries where
these two topics (the Aﬁican Decade and the proposed UN convention) were speciﬁc
topics or goals of the conference. Though the various countries were at different stages
of development as far as national disability strategies, all agreed that the global

movement did not represent them or recognize the relationship between disability and

poverty. Further, there was consensus about the need for a separate convention for the

188

disabled, rather than simply integrating disability into existing conventions. Here, too,
the impact of UN conventions were said to be failing Africa.

The weakness of the international disability rights movement is underscored by a
lack of understanding of disability as a political identity. This dissertation identiﬁed
disability as a potential location of identity, and how disability identity was created and
used in everyday life. Further, this dissertation described how disability as a human
rights issue was mobilized and forged a social model of disability, as demonstrated by
South Africa's disability rights movement. As a whole, the history and workings of the
South African disability rights movement provides an important model for other
countries to learn how to articulate and mobilize for rights. The model may not be
appropriate to all countries, but should serve as an example of what can be accomplished.

FUTURE DIRECTIONS

I asked every research participant what they thought this dissertation could do to
contribute to the movement, or how the information could be made more useful to
disabled South Africans. Some responded that whatever is done they would like a copy
and that whatever form the information took it should be made available in accessible
formats (e.g., Braille, audio tape, additional languages, and the like). Some thought about
it and contacted me later with ideas after their interviews. Others want OSDP to have a
copy and perhaps other relevant government departments should have a summary too.
Towards the end of ﬁeldwork the idea of a movement discussion document arose in an
interview. After more discussion with participants, this seems to be one appropriate
solution, and perhaps a helpful tool to spark a dialogue on a common agenda that was

identiﬁed as a current need of the movement. Therefore, this dissertation will evolve,

189

with the consultation of available participants, into a movement discussion document.
The dissertation as it appears for my degree requirements will also be distributed to those
who want a copy.

This dissertation is important to able-bodied readers as a "future direction"

because they are only that way, able-bodied, temporarily.

190

APPENDIX A

DISABILITY IDENTITY AND COMMUNITY FORMATION IN SOUTH AF RICA:
A HUMAN RIGHTS ISSUE

Department of Anthropology
Michigan State University

You are being asked to participate in a study examining the experiences of disability in
everyday life. Your opinion will be asked about people with disabilities, and if you have
a disability, how your life changed because of it. Concerns about disability as
experienced by you, family members or others are aims of this interview. The
information given to the researcher, Martha Laclave, will be used for completion of a
doctoral degree in medical anthropology.

Approximately 30 minutes to 1 hour of your time will be needed to participate in this
study.

Participation in this study is voluntary. You are free to decline, ask questions, or omit
anything you are uncomfortable with or do not understand at any time.

All information given to the researcher is conﬁdential; your name will not be released to
anyone and will not be published. You may request a copy of the research ﬁndings.

If you have any questions about this study, please contact the investigator:

Martha M. Laclave
Phone: 083-672-9900
Email: mlaclave@mweb.co.za or laclavem@msu.edu

If you have questions about your rights as a human subject of research, please contact:

Peter Vasilenko

University Committee on Research Involving Human Subjects
202 Olds Hall

Michigan State University

East Lansing, MI 48823

USA

Email: ecrihs@msu.edu

Tel: +01 517-355-2180

Fax: +01 517-353-2976

My advisor, Dr Judy Pugh, may also be contacted:

Department of Anthropology

191

Michigan State University

East Lansing, MI 48823
USA
Tel: +01 517-353-9634

 

The nature and general purpose of the research procedure and the known risks involved
have been explained to me by Martha Laclave.

I consent to the explained purpose and may withdraw from participating in this study at
any time.

Signature:

 

Date:

 

192

BIBLIOGRAPHY

Adam, Heribert
1995 The Politics of Ethnic Identity: Comparing South Aﬁica. Ethnic and Racial
Studies 18(3): 457-475.

African National Congress
1993 ANC Draft Bill of Rights. Preliminary Revised Version. Johannesburg: Center for
Development Studies. South African History Archive, Johannesburg, South
Africa.

African Union

N.d. Continental Plan of Action for the Aﬁican Decade of Persons with Disabilities
(1999-2009). Addis Ababa, Ethiopia: MCBS.

Allan, Graham
1996 Kinship and Friendship in Modern Britain. Oxford: Oxford University Press.

Alonso, Ana Maria

1994 The Politics of Space, Time and Substance: State Formation, Nationalism and
Ethnicity. Annual Review of Anthropology 232379-405.

American Anthropological Association
N.d. AAA Style Guide. Electronic document,
http://www.aaanet.org/pubs/style_guide.htrn, accessed August 21, 2004.

American Psychological Association
N.d. Guidelines for Non-Handicapping Language in APA Journals. Electronic
document, http2//www.apastyle.org/disabilities.htrnl, accessed September 7, 2004.

Anderson, Benedict

1990 Imagined Communities: Reﬂections on the Origin and Spread of Nationalism.
Revised Edition. New York: Verso.

Angrosino, Michael V.

1992 Metaphors of Stigma: How Deinstitutionalized Mentally Retarded Adults See
Themselves. Journal of Contemporary Ethnography 21(2)217 1-199.

Asad, Talal

1997 On Torture, or Cruel, Inhuman, and Degrading Treatment. In Social Suffering.
Arthur Kleinman, Veena Das, Margaret Lock, eds. Pp. 285-308. Berkeley:
University of California Press.

193

 

Asch, A., and L. Sacks
1983 Lives Without, Lives Within: Autobiographies of Blind Women and Men. Journal
of Visual Impairment and Blindness 77(6)2242-247.

Baehr, Peter R.
2001 Human Rights: Universality in Practice. New York: Palgrave.

Baldwin-Ragaven, Laurel, Jeanelle de Gruchy, Leslie London
1999 An Ambulance of the Wrong Color: Health Professionals, Human Rights and
Ethics in South Africa. Cape Town: University of Cape Town Press.

Becker, Gaylene

1983 Growing Old in Silence: Deaf People in Old Age. Berkeley: University of
California Press.

Beer, Bettina
1998 Freundschaft als Thema der Ethnologie. Zeitschrift ﬁlr Ethnologie 123:191-213.

Beinart, William
1992 Political and Collective Violence in Southern African Historiography. Journal of
Southern African Studies 18(3):455-486.

Bekker, Simon

1993 Ethnicity in Focus: The South African Case. Natal: University of Natal, Indicator
SA.

Ben-Sira, Zeev
1983 Loss, Stress and Readjustment: The Structure of Coping with Bereavement and
Disability. Social Science and Medicine 17(21)2l619-1623.

Bijur, Polly E.
1995 What's In a Name?2 Comments on the Use of the Term "Accident" and "Injury".
Injury Prevention 129-11.

Blaxall, A. W.
1965 Suspended Sentence. London: Hodder and Stoughton.

Bolton, Jonathan

1995 Medical Practice and Anthropological Bias. Social Science and Medicine
40(12):]655-1661.

Boonzaier, Emile

1988 'Race' and the Race Paradigm. In South African Keywords: The Uses and Abuses
of Political Concepts. Emile Boonzaier and John Sharp, eds. Pp. 58-67.
Johannesburg: David Philip.

194

Botha, M. C.
1964 Ons Stedelike Bantoebeleid Teen die Agterground van ons Landbeleid. Journal of
Racial Affairs 15217.

Braithwaite, Dawn 0.
1990 From Majority to Minority: An Analysis of Cultural Change from Ablebodied to
Disabled. International Journal of Intercultural Relations 142465-483.

Bruun, F rank Jarle
1995 Hero, Beggar, or Sports Star: Negotiating the Identity of the Disabled Person in
Nicaragua. In Disability and Culture. Benedicte Ingstad and Susan Reynolds
Whyte, eds. Pp. 196-209. Berkeley: University of California Press.

Burdick, John
1995 Uniting Theory and Practice in the Ethnography of Social Movements: Notes
Toward a Hopeﬁrl Realism. Dialectical Anthropology 202361-385.

Butler, Judith

1997 The Psychic Life of Power: Theories in Subjugation. Stanford: Stanford
University Press.

Campling, Jo
1981 Images of Ourselves: Women with Disabilities Talking. Boston: Routledge &
Kegan Paul.

Canel, Eduardo
1997 New Social Movement Theory and Resource Mobilization Theory: The Need for
Integration. In Community Power and Grassroots Democracy: The Transformation

of Social Life. Michael Kaufman and Haroldo Dilla Alfonso, eds. Pp. 189-221.
London: Zed Books.

Chabedi, Marks

2003 State Power, Violence, Crime and Everyday Life: A Case Study of Soweto in
Post-Apartheid South Africa. Social Identities 9(3):357-371.

Chambers, Robert
1983 Rural Development: Putting the Last First. London: Longman.

Chandler, Daniel
2001 Semiotics: The Basics. New York: Routledge.

Cherry, Janet Mary

2000 Kwazakele: The Politics of Transition in South Africa: An Eastern Cape Case
Study. Ph.D. dissertation, Rhodes University.

195

City of Johannesburg
2003 Annual Report on the City of Johannesburg: 2002/2003. Johannesburg: City of
Johannesburg.

Cock, J ., E. Emdon, B. Klugman
1990 The Care of the Apartheid Child: An Urban African Study. In Growing Up in a
Divided Society: The Context of Childhood in South Africa. S. Burman and P.
Reynolds, ed. Pp. Johannesburg: Ravan Press.

Cohen, Jean L.

1985 Strategy or Identity: New Theoretical Paradigms and Contemporary Social
Movements. Social Research 52(4)2663-716.

Comaroff, J.

1992 Of Totemism and Ethnicity. In Ethnography and the Historical Imagination. J.
Comaroff and J. Comaroff, eds. Pp. 49-67. Boulder: Westview.

Coleridge, Peter
1996 Disability, Liberation, and Development. Oxford: Oxfam.

Coovadia, H. M., and C. C. Jinabhai
1990 The Pestilence of Health Care: Black Death and Suffering Under White Rule. In
Repression and Resistance: Insider Accounts of Apartheid. Roben Cohen, Yvonne
G. Muthien, Abebe Zegeve, eds. Pp. 86-116. New York: Hans Zell Publishers.

Cox, Anna
2002 Boy Tells of Torture at His Parents' Hands. The Star, December 6.

Csordas, Thomas J.

1994 Self and Person. In Handbook of Psychological Anthropology. Philip K. Bock, ed.
Pp. 331-350. Westport, Connecticut: Greenwood Press.

1990 Embodiment as a Paradigm for Anthropology. Ethos 1825-47.

Das, Veena
2000 Violence and the Work of Time. In Signifying Identities: Anthropological

Perspectives on Boundaries and Contested Values. Anthony P. Cohen, ed. Pp. 59-
73. New York: Routledge.

1997 The Act of Witnessing: Violence, Poisonous Knowledge, and Subjectivity. In
Violence and Subjectivity. Veena Das, Arthur Kleinman, Marnphela Ramphele,
and Pamela Reynolds, eds. Pp. 205-225. Berkeley: University of California Press.

196

Deacon, Harriet
2003 Insanity, Institutions and Society: The Case of the Robben Island Lunatic
Asylum, 1846-1910. In The Conﬁnement of the Insane: International Perspectives,
1800-1965. Roy Porter and David Wright, eds. Pp. 20-39. Cambridge: Cambridge
University Press.

de Certeau, Michel
1984 The Practice of Everyday Life. Steven Rendall, trans. Berkeley: University of
California Press.

de la Bat, G.
1930 The Deaf Child in the Home. Worcester: Worcester Standard Electric Press, Ltd.

Devish, René
1993 Weaving the Threads of Life: The Khita Gyn-Eco-Logical Healing Cult Among
the Yaka. Chicago: University of Chicago Press.

Diamond, Larry (ed.)
1992 The Democratic Revolution: Struggles for Freedom and Pluralism in the
Developing World. New York: Freedom House.

Diani, Mario
1992 The Concept of Social Movement. The Sociological Review 2-23.

DiGiacomo, Susan M.
1992 Metaphor as Illness: Postmodern Dilemmas in the Representation of the Body,
Mind and Disorder. Medical Anthropology Quarterly 14:109-137.

Dominguez, V. R.

1986 People as Subject, People as Object: Selﬂrood and Peoplehood in Contemporary
Israel. Madison: University of Wisconsin Press.

du Toit, Brian

1994 Does the Road Get Lonelier?2 Aging in a Coloured Community in South Africa.
Journal of Aging Studies 8(4):357-374.

Edgerton, Robert B.

1993 The Cloak of Competence. Revised and Updated. Berkeley: University of
California Press.

Escobar, Arturo

1992 Culture, Practice and Politics: Anthropology and the Study of Social Movements.
Critique of Anthropology 12(4):395-432.

197

Escobar, Arturo, and S. Alvarez (eds)
1992 The Making of Social Movements in Latin America: Identity, Strategy and
Democracy. Boulder, Colorado: Westview Press.

Estroff, Sue E.
1993 Identity, Disability, and Schizophrenia: The Problem of Chronicity. In
Knowledge, Power, and Practice: The Anthropology of Medicine in Everyday
Life. Shirley Lindenbaurn and Margaret Lock, eds. Pp. 247-286. Berkeley:
University of California Press.

Ewing, Katherine P.

1990 The Illusion of Wholeness: Culture, Self, and the Experience of Inconsistency.
Ethos 18(3)2251-278.

F abri, Antonella
1995 Memories of Violence, Monuments of History. In The Labyrinth of Memory:
Ethnographic Journeys. Marea C. Teski and Jacob J. Clirno, eds. Pp. 141-158.
Westport, Connecticut: Bergin and Garvey.

Farmer, Paul

2005 Pathologies of Power: Health, Human Rights, and the New War on the Poor.
Berkeley: University of California Press.

1997 On Suffering and Structural Violence: A View From Below. In Social Suffering.
Arthur Kleinman, Veena Das, Margaret Lock, eds. Pp. 261 -283. Berkeley:
University of California Press.

1992 AIDS and Accusation: Haiti and the Geography of Blame. Berkeley: University
of California Press.

Fine, Michelle, and Adrienne Asch

1981 Disabled Women: Sexism Without the Pedestal. Journal of Sociology and Social
Welfare VIII(2)2233-248.

Fisher, Bernice, and Roberta Galler
1988 Friendship and Fairness: How Disability Affects Friendship Between Women. In

Women with Disabilities: Essays in Psychology, Culture, and Politics. Michelle
Fine and Adrienne Asch, eds. Pp. 172-194.

Fiske, John
1990 Ethnosemiotics: Some Personal and Theoretical Reﬂections. Cultural Studies
4(1): 85-99.

1987 Television Culture. New York.

198

Foucault, Michel
1978 The History of Sexuality: An Introduction, vol. 1. New York: Vintage Books.

Fox, Richard G., and Orin Starn
1997 Introduction. In Between Resistance and Revolution: Cultural Politics and Social
Protest. Richard G. Fox and Orin Starn, eds. Pp. 1-16. New Brunswick, New
Jersey: Rutgers University Press.

Friedman, Steven (ed.)
1993 The Long Journey. Johannesburg: Ravan Press.

Gasa, Nomoniso

2003 Initiation: Rite of Passage or the Unkindest Cut? The Sunday Independent,
August 3: 17.

Gecas, Viktor
1982 The Self-Concept. Annual Review of Sociology 821-33.

Gerschick, T. J.
2000 Towards a Theory of Disability and Gender. Signs 25(4): 1263-1269.

Giddens, Anthony

1984 The Constitution of Society: Outline of the Theory of Structuration. Berkeley:
University of California Press.

Goffrnan, Erving

1961 Asylums: Essays on the Social Situation of Mental Patients and Other Inmates.
New York: Doubleday Anchor.

Goldman, Sarron

2003 White Boyhood Under Apartheid: The Experience of Being Looked After by a
Black Nanny. Ph.D. dissertation, Department of Philosophy and Literature,
Department of Psychology, Pretoria University.

Gongaware, Timothy B.
2003 Collective Memories and Collective Identities: Maintaining Unity in Native

American Educational Social Movements. Journal of Contemporary Ethnography
32(5)2483-520.

Good, Byron J.

1994 Medicine, Rationality, and Experience: An Anthropological Perspective. New
York: Cambridge University Press.

1992 Culture and Psychopathology: Directions for Psychiatric Anthropology. In New

Directions in Psychological Anthropology. Theodore Schwartz, Geoffrey M.
White, Catherine A. Lutz, eds. Pp. 181-205.

199

 

Gordon, R. J.
1991 Serving the Volk with Volkekunde. In Knowledge and Power in South Africa.
Jonathan D. Jansen, ed. Pp. 79-97. Johannesburg: Skotaville Publishers.

Gordon, R. J. and A. D. Spiegel
1993 Southern Aﬁica Revisited. Annual Review of Anthropology 22283-105.

Gramsci, Antonio
1971 Selections from the Prison Notebooks. Quintin Hoare and Geoffrey Nowell
Smith, eds, trans. New York: International Publishers.

Grant, B.
1997 Domestic Workers: Employees or Servants? Agenda 35261-65.

Groce, Nora
2002 From Charity to Disability Rights: Global Initiatives of Rehabilitation
International 1922-2002. New York: Rehabilitation International.

1985 Everyone Here Spoke Sign Language: Hereditary Deaﬁress on Martha's Vineyard.
Cambridge: Harvard University Press.

Grossman, John (managing ed.)

1993 The Chicago Manual of Style. 14’h edition. Chicago: The University of Chicago
Press.

Guthrie, D. I.

1961 An Experiment in Industrial Rehabilitation. South African Medical Journal
15:306-310.

Hamber, Brandon, and Richard Wilson
1999 Closure Through Memory, Reparation and Revenge in Post-Conﬂict Societies.
Paper presented at the Traumatic Stress in South Africa Conference, Center for the
Study of Violence and Reconciliation in association with the African Society for
Traumatic Stress Studies. Johannesburg, 27-29 January 1999.

Hammond-Tooke, W. D.

1997 Imperfect Interpreters: South Africa's Anthropologists 1920 - 1990.
Johannesburg: Witwatersrand University Press.

Haycock, G. Sibley
1936 Notes on Deaf Education in South Aﬁica. The Teacher of the Deaf 34.

Helander, Bernhard

1995 Disability as Incurable Illness: Health, Process, and Personhood in Southern
Somalia. In Disability and Culture. Benedicte Ingstad and Susan Reynolds Whyte,
eds. Pp. 73-93. Berkeley: University of California Press.

200

Hillyer Davis, Barbara
1984 Women, Disability, and Feminism: Notes Toward a New Theory. Frontiers
VIII(1)21-5.

Hlatshwayo, Simphine
2000 Education and Independence: Education in South Aﬁica, 1658-1988. Westport,
Connecticut: Greenwood Press.

Huntington, Samuel
1991 The Third Wave: Democratization in the Late Twentieth Century. Norman:
University of Oklahoma Press.

Hurst, L. A. and M. B. Lucas

1975 South Aﬁica. In World History of Psychiatry. J. G. Howells, ed. Pp. 600-623.
New York: Brunner/Mazel.

Jasper, James M.
1997 The Art of Moral Protest: Culture, Biography and Creativity in Social
Movements. Chicago: University of Chicago Press.

Jones, Alan
1994 Deaf Awareness Programs in South Aﬁica. In The Deaf Way: Perspectives From
the International Conference on Deaf Culture. Carol J. Erting, Robert C. Johnson,
Dorothy L. Smith, Bruce D. Snider, eds. Pp. 698-701. Washington, D. C.:
Gallaudet University Press.

Jones, Tiffany F.
2003 Prospects of a Progressive Mental Health System in 19405 South Africa:
Hereditarianism, Behaviourism and Radical Therapies. Workshop on South Africa

in the 19405, Southern Aﬁican Research Center, Kingston, Canada, September
2003.

Kallaway, Peter

1984 Apartheid and Education: The Education of Black South Africans. Johannesburg:
Ravan Press.

Katzen, M. F.
1969 White Settlers and the Origin of a New Society, 1652-1778. In The Oxford

History of South Africa, vol. 1. Monica Wilson and Leonard Thompson, eds. Pp.
187-228. Oxford: Oxford University Press.

Klandermans, Bert

1986 New Social Movements and Resource Mobilization: The European and the

American Approach. International Journal of Mass Emergencies and Disasters
4213-38.

201

Kleinman, Arthur
1997 The Violences of Everyday Life: The Multiple Forms and Dynamics of Social
Violence. In Violence and Subjectivity. Veena Das, Arthur Kleinman, Mamphela
Ramphele, and Pamela Reynolds, eds. Pp. 226-241. Berkeley: University of
California Press.

1980 Patients and Healers in the Context of Culture: An Exploration of the Borderland
Between Anthropology, Medicine, and Psychiatry. Berkeley: University of
California Press.

Kleinman, Arthur, Veena Das, Margaret Lock
1997 Introduction. In Social Suffering. Arthur Kleinman, Veena Das, Margaret Lock,
eds. Pp. ix-xxvii. Berkeley: University of California Press.

1996 Introduction. Daedalus 125(1)2xi-xx.

Kondo, Dorinne K.
1990 Crafting Selves: Power, Gender, and Discourses of Identity in a Japanese
Workplace. Chicago: University of Chicago Press.

Kruger, A.
1980 Mental Health Law in South Africa. Durban: Butterworth.

Kuper, Leo
1975 Race, Class and Power: Ideology and Revolutionary Change in Plural Societies.
Chicago: Aldine Publishing.

1969 Ethnic and Racial Pluralism: Some Aspects of Polarization and Depluralization.
In Pluralism in Aﬁica. Leo Kuper and M. G. Smith, eds. Pp. 459-490. Berkeley:
University of California Press.

Lakoff, George, and Mark Johnson
1980 Metaphors We Live By. Chicago: University of Chicago Press.

Lane, Harlan
1984 When the Mind Hears: A History of the Deaf. New York: Random House.

Lang, Harry G.
2003 Perspectives on the History of Deaf Education. In Oxford Handbook of Deaf
Studies, Language, and Education. Marc Marshark and Patricia Elizabeth Spencer,
eds. Pp. 9-20. New York: Oxford University Press.

Lea, Susan and Don Foster, eds.

1990 Perspectives on Mental Handicap in South Aﬁica. Durban Butterworth-
Heinemann.

202

Linton, Simi
1998 Claiming Disability: Knowledge and Identity. New York: New York University
Press.

Lock, Margaret and Nancy Scheper-Hughes
1990 A Critical-Interpretive Approach in Medical Anthropology: Rituals and Routines
of Discipline and Dissent. In Medical Anthropology: Contemporary Theory and
Method. Carolyn F. Sargent and Thomas M. Johnson, eds. Pp. 47-72. Westport,
Connecticut: Praeger.

Luborsky, Mark R.
1994 The Cultural Adversity of Physical Disability: Erosion of Full Adult Personhood.
Journal of Aging Studies 8(3)2239-253.

Malan, Maris
1988 In Quest of Health: The South African Institute for Medical Research, 1912-1973.
Johannesburg: Lowry Publishers.

Malatji, Ngwako
2003 Disabled Son Locked Up in Parents' Home . . .. Sunday Sun, August 10.

Mandela, Nelson
1961 Out of the Strike. Aﬁica South in Exile 6(1):]5-23.

Manganyi, N. Chabani, and Andre du Toit
1990 The Time of the Comrades: Reﬂections on Political Commitment and
Professional Discourse in a Context of Political Violence. In Political Violence and
the Struggle in South Africa. N. Chabani Manganyi and André du Toit, eds. Pp. 1-
28. London: Macmillan Academic and Professional Ltd.

Maponya, Frank
2003 Initiaion Schools 'Cause for Concern'. Sowetan, July 4.

Maponya, Frank, and Sydwell Mabasa
2003 Boys Lose Manhood. Sowetan, July 162 1, 2.

Marcus, George E. and Michael M. J. Fischer

1986 Anthropology as Cultural Critique: An Experimental Moment in the Human
Sciences. Chicago: University of Chicago Press.

Marks, Shula
1992 The Origins of Ethnic Violence in South Africa. In Peace, Politics and Violence

in the New South Aﬁica. Norman Etherington, ed. Pp. 121-146. New York: Hans
Zell Publishers.

203

Mayibuye
1993 The ANC and the Rights of the Disabled. 4(7):21-22.

McCarthy, J. D., and M. N. Zald
1977 Resource Mobilization and Social Movements: A Partial Theory. American
Journal of Sociology 82(May)21212-1239.

McMurray, T. B.
1961 The Treatment and Rehabilitation of Traumatic Paraplegic Patients in South
Africa. South Aﬁican Medical Journal 35(1)21-3.

Melucci, Alberto

1996 Challenging Codes: Collective Action in the Information Age. New York:
Cambridge University Press.

1995 The Process of Collective Identity. In Social Movements and Culture. H. Johnston
and B. Klandermans, eds. Pp. 41-63. Minneapolis: University of Minnesota Press.

1988 Social Movements and the Democratization of Everyday Life. In Civil Society

and the State: New European Perspectives. John Keane, ed. Pp. 245-260. New
York: Verso.

1985 The Symbolic Challenge of Contemporary Movements. Social Research 23(4/5):
8 19-835.

1984 An End to Social Movements? Social Science Information 23(4/5)2819-835.

1980 The New Social Movements: A Theoretical Approach. Social Science
Information 19(2): 199-226.

Merleau-Ponty, M.
1962 Phenomenology of Perception. Colin Smith, trans. New York: Routledge.

Messer, Ellen
1993 Anthropology and Human Rights. Annual Review of Anthropology 22: 221-249.

Minde, M.
1975a History of Mental Health Services in South Africa, part IX: The Protection and
Care of the F eebleminded. South African Medical Journal 4921716-1720.

1975b History of Mental Health Services in South Africa, part VI: The Transvaal.
South African Medical Journal 492367-374.

Ministry of Martyrs and Disabled

2003 The Comprehensive National Disability Policy in Afghanistan. Kabul: Ministry of
Martyrs and Disabled.

204

Minow, Martha
2000 The Hope for Healing: What Can Truth Commissions Do? In Truth v. Justice:
The Morality of Truth Commissions. Robert I Rotberg and Dennis Thompson, eds.
Pp. 23 5-260. Princeton: Princeton University Press.

Momburg, E.
2003 SA Jobless Figure Now 4.8 m, says Survey. The Citizen: 4. (26 March)

Mohanty, J.
1993 The Status of the Subject in Foucault. In Foucault and the Critique of Institutions.
John Caputo and Mark Yount, eds. Pennsylvania State University Press.

Morgans, Helen
1999 Where Did South African Sign Language Originate? Language Matters 30:53-58.

Moyle, D.
1987 Drawing the Line: An Early History of Lunacy in South Africa. Unpublished BA
Hons dissertation, University of Cape Town.

Nagengast, Carole
1994 Violence, Terror, and the Crisis of the State. Annual Review of Anthropology
23:109-136.

Nance, Walter E., and Michael J. Kearsey
2004 Relevance of Connexin Deafness (DFNB l) to Human Evolution. American
Journal of Human Genetics 74(6): 1081-1087.

Narayan, Deepa (ed.)
2002 Empowerment and Poverty Reduction: A Sourcebook. Washington, D. D.: The
World Bank.

National Archives of South Africa
1901 "Mr. P. F. von Straten, A Cripple, Caused Unrest in Johannesburg and Should be
sent to a Refugee Camp." TAB, 000/00, PMO, LEER, Vol. No. 30, Sys 01, Ref.
PM2087/01, Part 1. National Archives of South Aﬁica, Pretoria, South Aﬁica.

N.d. "ILO Recommendation (N o 99) Concerning Vocational Rehabilitation of the
Disabled, 1955." Untitled paper, SAB, URU, LEER, Vol. No. 3572, Sys 01, Part
1. National Archives of South Africa, Pretoria, South Aﬁica.

N.d. "Erection of Epileptic and Cripple Home, Lunatic Asylum, Pretoria." Archived
material, National Archives of South Africa, Pretoria, South Aﬁica.

N.d. "Lord Roberts Memorial Workshop." Archived material, National Archives of
South Africa, Pretoria, South Africa.

205

N.d. "Special School for Epileptics at Kuils River Under Act 29 of 1928." E63, 1, 14,
Vol.2 1, Union Education Department. Archived material, National Archives of
South Aﬁica, Pretoria, South Africa.

New Beacon
1971 Obituary. Electronic document, http2//www.mib.org.uk/xpedio/groups/public/
documents/Visugate/public_nbjan71.hcsp?printPage=1, accessed June 29, 2004.

Nicoll, E. A.
1941 Letter. British Medical Journal 12501.

Nordstrom, Carolyn, and JoAnn Martin
1992 The Culture of Conﬂict: Field Reality and Theory. In The Paths to Domination,
Resistance, and Terror. Carolyn Nordstrom and JoAnn Martin, eds. Pp. 3-17.
Berkeley: University of California Press.

Norton, B.

1984 Ethnicity and Class: A Conceptual Note with Reference to the Politics of Post-
Colonial Societies. Ethnic and Racial Studies 72426-434.

Nydegger, Corinne N.
1986 Age and Life-Course Transitions. In New Methods for Old Age Research.

Christine L. Fry and Jennie Keith, eds. Pp. 131-161. South Hadley, Massachusetts:
Bergin and Garvey.

Oberschall, A.

1973 Social Conﬂict and Social Movements. Englewood Cliffs, New Jersey: Prentice-
Hall.

Offe, C.

1985 New Social Movements: Challenging the Boundaries of Institutional Politics.
Social Research 52(4).

OSDP/Howell, Colleen

N.d. Counting Us In: A History of the Disability Rights Movement in South Aﬁica

(1980 — 2001). Unpublished manuscript, Ofﬁce on the Status of Disabled Persons,
South Africa.

Oliver, Mike
1996 A Sociology of Disability or a Disablist Sociology? In Disability and Society:
Emerging Issues and Insights. Len Barton, ed. Pp. 18-42. New York: Longman.

1992 Changing the Social Relations of Research Production? Disability, Handicap and
Society 7(2)2101-114.

206

1990a The Individual and Social Models of Disability. Paper presented at the Joint
Workshop of the Living Options Group and the Research Unit of the Royal
College of Physicians on People with Established Locomotor Disabilities in
Hospitals. Electronic document, http2//www.leeds.ac.uk/disability-
studies/archiveuk/Oliver/in20%2050c%20dis.pdf, accessed July 3, 2004.

1990b The Politics of Disablement. Basingstoke: Macmillan.
1983 Social Work with Disabled People. Basingstoke: Macmillan.

Penn, Claire
1992 The Sociolinguistics of Southern African Sign Language. In Language and

Society in Africa. Robert K. Herber, ed. Pp. 277-284. Johannesburg:
Witwatersrand University Press.

Peters, Susan

2000 Is There a Disability Culture?2 A Syncretization of Three Possible World Views.
Disability and Society 15(4): 583-601.

Phillips, Anne
1991 Engendering Democracy. University Park: The Pennsylvania State University
Press.

Preston, Paul

1994 Mother Father Deaf: Living Between Sound and Silence. Cambridge: Harvard
University Press.

Ramphele, Mamphela
1997 Political Widowhood in South Aﬁica: The Embodiment of Ambiguity. In Social
Suffering. Arthur Kleinman, Veena Das, Margaret Lock, eds. Pp. 99-117.
Berkeley: University of Califonria Press.

Raphael, Dana, Mike Salovesh, Martha M. Laclave

2001 The World in 3D: Dyslexia, Dysgraphia, Dysnumia. Disability Studies Quarterly
21(3):]52-160.

Research Dynamics South Africa and Ofﬁce on the Status of Disabled Persons
2000 Situation Analysis of Disability Integration in 18 National Government
Departments.

Ricoeur, Paul
1981 Hermeneutics and the Human Sciences: Essays on Language, Action and

Interpretation. John B. Thompson, ed. and trans. Cambridge: Cambridge
University Press.

207

1976 Interpretation Theory: Discourse and the Surplus of Meaning. Forth Worth: Texas
Christian University Press.

Rosaldo, Michelle Z.
1984 Toward an Anthropology of Self and Feeling. In Culture Theory: Essays on Mind,
Self, and Emotion. Richard A. Shweder and Robert A. LeVine, eds. Pp. 137-157.
Cambridge: Cambridge University Press.

Rowland, William
2001 "Nothing About Us Without Us": Some Historical Reﬂections on the Disability
Movement in South Africa. Issue 11 (N ovember-December). Electronic document,

http2//www.disabilityworld.org/11-12_01/il/southaﬁica.shtml, accessed July 1,
2004.

Salman, T.

1990 Between Orthodoxy and Euphoria: Research Strategies on Social Movements, a
Comparative Perspective. In Structures of Power, Movements of Resistance: An
Introduction to the Theories of Urban Social Movements in Latin America. W.
Assies, G. Burgwal, and T. Salman, eds. Pp. 99-161. Amsterdam: CEDLA.

Saunders, Christopher, and Nicholas Southey

2001 A Dictionary of South African History. Second edition. Johannesburg: David
Philip.

Scarry, Elaine
1985 The Body in Pain. New York: Oxford University Press.

Scheper-Hughes, Nancy
1998 Undoing: Social Suffering and the Politics of Remorse in the New South Aﬁica.
Social Justice 25(4):114-142.

1992 Death Without Weeping: The Violence of Everyday Life in Brazil. Berkeley:
University of California Press.

Scheper-Hughes, Nancy, and Margaret M. Lock

1987 The Mindful Body: A Prolegomenon to Future Work in Medical Anthropology.
Medical Anthropology Quarterly 126-41.

Schneider, Margie, Marritt Claassens, Zaid Kimmie, Ruth Morgan, Sigamoney Naiker,
Archie Roberts, Pam McLaren
1999 "We Also Count": The Extent of Moderate to Severe Reported Disabilities and
the Nature of the Disability Experience in South Africa. Johannesburg:
Community Agency for Social Enquiry.

208

Scott, James C.
1990 Domination and the Arts of Resistance: Hidden Transcripts. New Haven,
Connecticut: Yale University Press.

Sentumbwe, Nayinda
1995 Sighted Lovers and Blind Husbands: Experiences of Blind Women in Uganda. In
Disability and Culture. Benedicte Ingstad and Susan Reynolds Whyte, eds. Pp.
159-173. Berkeley: University of Califomia Press.

Sharp, John
1988a Ethnic Group and Nation: The Apartheid Vision in South Aﬁica. In South

African Keywords: The Uses and Abuses of Political Concepts. Emile Boonzaier
and John Sharp, eds. Pp. 79-99. Johannesburg: David Philip.

1988b Introduction: Constructing Social Reality. In South African Keywords: The Uses
and Abuses of Political Concepts. Emile Boonzaier and John Sharp, eds. Pp. 1-16.
Johannesburg: David Philip.

1981 The Roots of Development of Volkekunde in South Africa. Journal of Southern
African Studies 8216-36.

Shaw, Thomas
1994 The Semiotic Mediation of Identity. Ethos 22(1):83-119.

Shweder, Richard A., and Edmund J. Boume
1984 Does the Concept of the Person Vary Cross-Culturally? In Culture Theory: Essays
on Mind, Self, and Emotion. Richard A. Shweder and Robert A. LeVine, eds. Pp.
158-199. Cambridge: Cambridge University Press.

Simmons, Robert M. T.

1994 The Role of Educational Systems and Deaf Culture in the Development of Sign
Language in South Africa. In The Deaf Way: Perspectives From the lntemational
Conference on Deaf Culture. Carol J. Erting, Robert C. Johnson, Dorothy L.
Srrrith, Bruce D. Snider, eds. Pp. 78-84. Washington, D. G: Gallaudet University
Press.

Skalnik, Peter

1988 Tribe as Colonial Category. In South African Keywords: The Uses and Abuses of

Political Concepts. Emile Boonzaier and John Sharp, eds. Pp. 68-78. Johannesburg:
David Philip.

Smith, Anthony D.
1986 The Ethnic Origins of Nations. Oxford: Basil Blackwell.

209

Smith, R. T.
1993 On the Disutility of the Notion of 'Ethnic Group' for Understanding Status
Struggles in the Modern World. Presented at the University of Guadalajara
Conference, Jalisco.

Sdkefeld, Martin
1999 Debating Self, Identity, and Culture in Anthropology. Current Anthropology
40(4)2417-447.

South Africa
1997a White Paper on an Integrated National Disability Strategy. Ndabeni, Western
Cape: Rustica Press (Pty.) Ltd.

1997b White Paper for Social Welfare, Ministry for Welfare and Population
Development, General Notice 1108 of 1997. Electronic document,

http://www.polity.org.za/govdocs/white_papers/social977.htrnl, accessed
November 2001.

South African Human Rights Commission
2002 Towards a Barrier-Free Society. Johannesburg: SAHRC.

Sowetan
2003 Sowetan, April 23.

2003 Sowetan, April 25.

Spies, S. B.
1977 Methods of Barbarism: Roberts and Kitchener and Civilians in the Boer
Republics January 1900 - May 1902. Cape Town: Human and Rousseau.

Statistics South Aﬁica
2003 Census 2001: Census in Brief. Pretoria: Statistics South Aﬁica.

Steinberg, Shelia

1998 Sign Language as the Bridge Across Deaf Boundaries: A South African
Experience. Communicatio 24(l)259-66.

Stone, Emma and Mark Priestley
1996 Parasites, Pawns and Partners: Disability Research and the Role of the Non-
Disabled Researcher. British Journal of Sociology 47(4)2699-716.

Suarez-Orozco, Marcelo M.

1994 Remaking Psychological Anthropology. In The Making of Psychological

Anthropology 11. G. Spindler and L. Spindler, eds. Pp. 10-59. Forth Worth, Texas:
Harcourt Brace.

210

Swarts, S.
1994 Colonizing to Insane: Causes of Insanity in the Cape, 1891-1920. Unpublished
manuscript.

Taljaard, P. C., and S. E. Bosch
1988 Handbook of Isizulu. Pretoria: J. L. van Shaik (Pty) Ltd.

Talle, Aud
1995 A Child is a Child: Disability and Equality Among the Kenya Maasai. In
Disability and Culture. Benedicte Ingstad and Susan Reynolds Whyte, eds. Pp. 56-
72. Berkeley: University of California Press.

Taussig, Michael
1987 Shamanism, Colonialism, and the Wild Man: A Study in Terror and Healing.
Chicago: University of Chicago Press.

1980 Reiﬁcation and the Consciousness of the Patient. Social Science and Medicine
14823-13.

Teppo, Annika Bj 6msdotter
2004 The Making of a Good White: A Historical Ethnography of the Rehabilitation of
Poor Whites in a Suburb of Cape Town. Dissertation, Research Series in
Anthropology, University of Helsinki.

Terre Blanche, Martin

1999 Readmission and the Social Construction of Mental Disturbances. D Litt et Phil
dissertation, University of South Aﬁica.

Thompson, Leonard
1990 A History of South Africa. New Haven: Yale University Press.

Thornton, Robert
1996 The Potentials of Boundaries in South Africa: Steps Toward a Theory of the
Social Edge. In Postcolonial Identities in Africa. Richard Werbner and Terence
Ranger, eds. Pp. 136-161. New Jersey: Zed Books.

Thornton, Robert and Mamphela Ramphele
1988 The Quest for Community. In South African Keywords: The Uses and Abuses of

Political Concepts. Emile Boonzaier and John Sharp, eds. Pp. 29-39. Johannesburg:
David Philip.

Titchkosky, Tanya

2001 Disability: A Rose by Any Other Name?2 "People-First" Language in Canadian
Society. The Canadian Review of Sociology and Anthropology 38(2): 125-140.

211

Tomaselli, Keyan G.
1996 Appropriating Images: The Semiotics of Visual Representation. Hejbjerg,
Denmark: Intervention Press.

Truth and Reconciliation Commission
1998 Volume Four: Truth and Reconciliation Commission of South Africa Report.
Cape Town: TRC.

Turner, Victor
1969 The Ritual Process: Structure and Anti-Structure. Chicago: Aldine Publishing Co.

Udvardy, Monica, and Maria Cattell
1992 Gender, Aging and Power in Sub-Saharan Aﬁica: Challenges and Puzzles.
Journal of Cross-Cultural Gerontology 72275-288.

United Nations

2001 Comprehensive and Integral International Convention to Promote and Protect the
Rights and Dignity of Persons with Disabiliteis. Electronic document,

http2//www.un.org/esa/socdev/enable/disAS6168e1.htrn, accessed September 27,
2004.

1986 Manual on the Equalization of Opportunities for Disabled Persons. New York:
United Nations.

van Gennep, Arnold

1960 [1908] Rites of Passage. Michaela Vizedom and Mari Caffee, trans. Chicago:
University of Chicago Press.

van Reenen, Rykie (compiler)
1956 For One of These Little Ones: 1881-1956, Diamond Jubilee of the Deaf and Blind
Institute, Worcester. Robertson C. R: De Jong-Drukpers.

van Schalkwyk, Anastasia

1994 The Voice of Protest: Urban Black Women, Song and Resistance in the 19805.
Mmus thesis, University of Natal.

Vitus, L.
1987 The Role of the National Council for Mental Hygiene and Government Agencies
in Developing Mental Health Policy. Masters thesis, University of South Aﬁica.

Welch, Claude E.

1992 The African Commission on Human and Peoples' Rights: A Five-Year Report and
Assessment. Human Rights Quarterly l4(l):43-61.

212

 

Welsh, David
1975 The Growth of Towns. In The Oxford History of South Africa, volume 112 South
Africa 1870-1966. Monica Wilson and Leonard Thompson, eds. Pp. 172-244.
Oxford: Oxford University Press.

West, Cornel
1988 Marxist Theory and the Speciﬁcity of Afro-American Oppression. In Marxism
and the Interpretation of Culture. C. Nelson and L. Grossberg, eds. Pp. 17-29.
Urbana: University of Illinois Press.

Whyte, Susan Reynolds, and Benedicte Ingstad
1995 Disability and Culture: An Overview. In Disability and Culture. Benedicte Ingstad

and Susan Reynolds Whyte, eds. Pp. 3-32. Berkeley: University of California
Press.

Wilden, Anthony

1987 The Rules Are No Game: The Strategy of Communication. London: Routledge
and Kegan Paul.

Wilkes, Amett, and Nicholias Nkosi
1995 Zulu: A Complete Course for Beginners. London: Hodder Headline Plc.

Williams, B. F.

1991 Stains on My Name, War in My Veins: Guyana and the Politics of Cultural
Struggle. Durham, North Carolina: Duke University Press.

Williams, Raymond
1980 Problems in Materialism and Culture. London: Verso.

1977 Marxism and Literature. Oxford: Oxford University Press.
Zugman, Kara

2003 Political Consciousness and New Social Movement Theory: The Case of Fuerze
Unida. Social Justice 30(1):]53-176.

213

 

        
   

 

1'50 5 L

IIIIIIIIIIILILIIIIIIIﬂilllllllllllllllllll

0 4607