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Date

This is to certify that the
thesis entitled

INFERTILITY as a DISABILITY: ETHICAL REFLECTION

presented by

Deborah A. Randall-Hlubek

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6/01 c:/ClRC/DateDue.p65-p. 15

INFERTILITY as a DISABILITY: ETHICAL REFLECTION

BY

Deborah A. Randall-Illubek

A THESIS

Submitted to
Michigan State University
In partial fulfillment of the requirements
For the degree of

MASTER OF ARTS

Interdisciplinary Programs in Health and Humanities

2001

ABSTRACT
INFERTILITY as a DISABILITY: ETHICAL REFLECTION
By

Deborah A. Randall-HIubek

During the late twentieth century, infertile women and men began to claim that
they had a reproductive disability as a means to increase access to health care treatments
to help them overcome their infertility. On June 25, 1998, the United States Supreme
Court supported the claim that the infertile could be considered reproductively disabled
under an anti-discrimination law: the Americans with Disabilities Act of 1990 (ADA).
Upon review of the scholarly literature and legal cases addressing the issue of how the
infertile have utilized the ADA, it is clear a great deal of confusion exists on how to
interpret the ADA’s language and intent with regards to issues addressing access to
health insurance for the disabled, let alone the reproductively disabled. My thesis will
argue that infertility should not be classified as a reproductive disability, because doing
so would be unjust to the uninsured and the disabled. The ADA’s primary mission is to
protect the truly disabled from being discriminated against in the workplace. However,
anti-disability discrimination laws can’t protect the completely uninsured from being
discriminated against in the provision of health care. The larger question that needs to be
addressed is how does society protect individuals from being denied health care based on

reasons other than disability that also might be considered ethically unacceptable.

DEDICATION

This thesis is dedicated to all infertile women and men who struggle to finance their

pursuit of happiness.

iii

ACKNOWLEDGMENTS

I would like to thank my thesis committee, Judy Andre, Len Fleck and Peter
Vinten-Johansen, for their wisdom, insight and diligence in helping me complete my
thesis. This was a challenging process for everyone and I thank you all for your patience.

I would also like to thank the following Professors for giving me the courage to
pursue this very personal and professional journey; Howard Brody, Steve Rachman,
Tom Tomlinson and Betty Gaiss. It was difficult getting started, but their compassion
and leadership provided the foundation I needed to continue with my thesis.

Just as importantly I would like to thank all my friends and family members for
their lasting support during the last two years. As they will attest to, this was a personal
journey for them as well as for me. I could call anyone of these wonderful people and
bounce ideas off them day or night to help guide my thoughts with this thesis.

Finally, I would like to extend a special thank you to my husband, Mike Hlubek,
for his patience, wisdom, insight, and leadership in helping me to complete my thesis. As
you all know, writing is a challenge for me. During the last year, Mike helped me find
the words to express myself more clearly. Thank you so much for your patience and

love.

iv

PREFACE

I chose this topic because I am myself infertile. I became aware of the concept of
infertility as a disability while listening to a National Public Radio (NPR) broadcast of
“Morning Edition”, on November 10, 1998. The topic that morning was “Insurance
Coverage for Infertility”. When I heard that a United States Supreme Court ruling now
allowed infertility to be considered a disability as defined by the Americans with
Disabilities Act of 1990 I had many thoughts. My immediate reaction was that I am
infertile, but I am not disabled. Then I wondered how the United States Supreme Court
came to its conclusion that infertility could be considered a disability. What became
clear during NPR broadcast was that the infertile who were interviewed thought that
finally, because of the United States Supreme court ruling, insurance coverage for their
infertility treatments would improve. They could now claim that they were being
discriminated against under the ADA if their employer denied them medical insurance for
their “reproductive disability”. The ADA is one of many statutory agencies that address
anti-disability discrimination claims. Needless to say, during the research portion of my
thesis, I struggled with the notion that infertility should be considered a disability as a
means to improve insurance coverage for infertility. If I were to classify myself for
purposes of this thesis, I would have to say that during the years that I was pursuing
medical treatment for my infertility I was employed and medically insured. Moreover,
my medical insurance provided limited coverage for infertility. Therefore, I would have
been considered an privileged infertile woman who has had to make some very difficult

choices regarding my infertility. Choosing to pursue medical treatment for infertility

(I)

takes courage, patience, hope and the financial resources to do so. While pursuing my
dream to have a child of my own I endured many intrusive and painful medical
interventions, including multiple surgeries and drug therapies. Also, I had to pay for a
percentage of my infertility treatments. I do not remember exact costs, but my
employer’s medical insurance policy only covered a certain amount. After years of
trying to conceive and due to the restrictive costs associated with the treatments I stopped
pursuing medical treatment. I could not afford to pay for all the treatments associated
with my infertility. In spite of all this, I question the appropriateness of calling myself
disabled. I mourn the fact that I have not been able to have a child. However, unlike so
many traditionally disabled, I have not struggled with achieving those things most basic
in life that we all value- independence, inclusion and full integration of people with
disabilities- that people with true disabilities face. Also, I had choices available to me
that the uninsured infertile do not.

As I set out to write this thesis I was trying to figure out why I objected to being
called disabled. I was also curious as to why other infertile men and women seemed to
have no objections to being labeled “reproductively disabled”. Ultimately, my reading
and writing helped to deepen my conviction that the infertile should not rely on being
called “reproductively disabled” to improve access to insurance coverage for their
infertility. I believe it is wrong to use an anti-disability discrimination law, which was
meant to help the truly disabled overcome so many barriers, as a means to improve access

to insurance coverage for the infertile.

vi

Table of Contents

Introduction .................................................................................... l -1 5
Background Information- Definition of the Infertile .................. 3-4
Background Information: The ADA ..................................... 4-6
Infertility Insurance Coverage Differs from State to State ............ 6-7
Background: Silence and Shame .......................................... 7-8
Limited Dollars for Infertility Treatments ................................ 8-9
Overview of Literature ...................................................... 10-14
Summary ...................................................................... 15

The Emergence of Infertility as a Disability ............................................... 16-23
The ADA v. Protection for the Employed Infertile ..................... 16-19
The Equal Employment Opportunity Commission and the

ADA’s Definition of “Major Life Activity” ..................... 19-20
A Successful District Court Case and Health Insurance
Coverage for Infertility ............................................. 20-21

1998 United States Supreme Court Case Supports Labeling
Infertility a Disability within the Context of the ADA. . . . . 21-22

Conclusion .................................................................... 23
The Perpetuation of Unfaimess for the Infertile and the Eugenics Movement ...... 24-31
Brief History of the Eugenics Movement in the Early 1990’s ......... 25—26
Infertile White Women and the Eugenics Movement
in the Early 1900’s ................................................... 27-28
Poor Women and Non-White Women and the Eugenics Movement..28-29
Worthiness of Who Becomes a Parent in the 21St Century .............. 30-31

The “Reproductively Disabled” as a Usurpation of the Protections of the ADA. . 32-41

The Evolution of the Disability-Rights Movement ...................... 32-34
The Social Construction of “Disability” and the Infertile ............... 34-36
“Reproductive Disability” and Understanding

Disability in the Traditional Sense ................................ 36-38

“Employed Uninsured Infertile” and
Representation in Health Care Policy Decision Making ....... 38-40

Summary ....................................................................... 40-41
The Additional Label Disabled and the Potential to Discourage the Infertile from Openly
Discussing Issues Regarding Inadequate Health Insurance Coverage .................. 42-49
Representation, or Lack Thereof, of Infertile
Personal Narratives in Literature .................................. 42-44
Cultural and Social Events that helped to Move a
Very Private Situation, Infertility, Public ........................ 44

vii

(I)

Voices are Missing ......................................................... 45-46
Incorporating Voices of the Infertile and Health Care
Policy Decision Making ........................................... 46-49
Conclusion ..................................................................................... 50-55

Bibliography ................................................................................... 56-58

viii

INTRODUCTION

"As a society, we need to first prevent what infertility we can and then examine
the issues of distributive justice. Genuine procreative choice simply does not exist if
economic barriers effectively prohibit treatment options for the infertile of limited
means." Barbara J. Berg, Listening to the Voices of the Infertile, 1995

 

On June 25, 1998 the United States Supreme Court ruled that infertility could be
considered a disability under the Americans with Disabilities Act of 1990 (ADA). This
ruling troubles me. I question what the impact of this ruling will have on the traditionally
disabled as well as on the infertile. Some infertile believe that this ruling will open doors
to better health insurance coverage for their “disability” and also force employers to
adjust work schedules to accommodate treatments for their disability. On the other hand,
some legal scholars are questioning the appropriateness of labeling the inability to
procreate a disability. These scholars wonder how the Supreme Court ruling will affect
future litigation regarding employer-based health insurance coverage for the infertile.
They also question the nature of the legal reasoning behind labeling infertility a disability
under the ADA. The purpose of this thesis is to examine the origin of this movement and
explore the problems associated with it.

I oppose the notion that infertility should be labeled a disability as a means to
improve health insurance coverage for infertility. I am going to argue that this movement
is not ethically good for the traditionally disabled or for the infertile. The primary intent
of the ADA is to improve the quality of life of the traditionally disabled by preventing
discrimination against people with disabilities in employment, transportation and

communication. I believe that some infertile have misappropriated the label to challenge

the notion that they should have a right to employer-based health insurance coverage for
their infertility.

The notion that the infertile may claim that they are “reproductively disabled”
under the Americans with Disabilities Act as a means to improve access to health
insurance coverage is problematic. What is evident is that calling on anti-disability
discrimination laws to resolve health insurance disputes does not prevent denials of
health care based on factors other than disability that also might be ethically
objectionable (Mehlman, Durchslag and Neuhauser, 1997, p. 1407). Potential problems
include: (1) Classifying infertility as a disability would be unfair because it would only
help those who have insurance, and thus are already privileged. This unfairness would
perpetuate a tendency with deep historical roots in America: the belief that those who are
less well off have less of a right to have children. (2) Classifying infertility as a disability
would be unfair to those who are traditionally considered disabled. The classification
would take whatever power the disabled have obtained and designate it for others. (3)
Classifying infertility as a disability would be to the disadvantage of some infertile: those
who feel stigmatized would be reinforced in their feeling that they must keep their
situation entirely private. This would perpetuate another unfortunate historical legacy:
the silence of those who felt shame from their situation.

Each of the above mentioned problems will be examined in greater detail. First,
the evolution of legal thought that procreation ought to be considered a disability will be
examined. Second, the historical perspective that the infertile may be unworthy of
parenthood and the consequences of this perspective for the infertile will be evaluated.

Third, a critical analysis of the political and social ideologies that influence how the

infertile act or react to their personal tragedy and an evaluation of the potential
consequences of labeling oneself infertile and disabled will be conducted. This thesis
will argue that dialogue attempting to classify the infertile as disabled should not be used
to increase access to insurance coverage. The label should not be extended this way,

even if doing so would increase insurance coverage for the infertile. Ultimately, infertility
should not be classified as a disability, because doing so would be unjust to the uninsured

and the disabled, and could potentially silence the infertile.

Background Information- Definition of the Infertile

Intrinsic to many women and men is the desire to pursue biological parenthood.

The desire to experience the joys associated with pregnancy and childbirth and to raise
children often motivates the infertile to pursue choices. Unfortunately, this desire can be

thwarted by the medical condition infertility. Infertility can be defined as the failure to
conceive after one year of intercourse without using contraception (House of
Representatives, 101St Congress, 1St Session, Dec. 1, 1989, p. 3). The infertile often must
seek medical treatment to help them conceive a biological child. Within the context of
this thesis, I will be referring to the “employed insured infertile” and the “employed
uninsured infertile.” The “employed insured infertile” are those individuals who possess
the resources necessary, albeit often limited resources, to medically diagnose and treat
their infertility. Also, they may possess the financial resources necessary to challenge
perceived injustices that exist regarding denial of health insurance for their condition.
The “employed uninsured infertile” are those women and men who may not possess the

resources necessary to either diagnose and treat their condition or pursue financial

assistance. This thesis will examine critically the prospect that the infertile should rely

on the ADA to help them gain access to health care resources for their infertility.

Background Information: The ADA

Upon review of the literature, I discovered that during the late twentieth century
“employed insured infertile” women and men began to claim they had a “reproductive
disability” to access financial and medical resources previously denied them or
unavailable to them; (Millsap (1996), Mehlman et al. (1997), Gleicher (1998),
RESOLVE, 1999). Within the context of the ADA, otherwise known as Public Law 101-
336, which was passed on July 26, 1990, some employed infertile claimed that their
“major life activity” of procreation was being discriminated against if they were denied
health insurance coverage for their infertility. Claiming to be “reproductively disabled”
has provided some men and women the opportunity to challenge the injustices they
perceive in the workplace regarding inadequate health insurance coverage for their
infertility. However, with respect to health insurance access, such claims do not help
those men and women who are unemployed or are uninsured. The primary purpose of the
ADA, established in 1990, was to prohibit discrimination against persons with disabilities
by doing away with the barriers that prevented the disabled from participating fully in
society. The intent of the ADA was to “bring individuals with disabilities into the
mainstream of the economic structure of this country. In employment, in public
accommodations, in transportation, in communications services. . (Senator Hatch,
Congressional Record-Senate, July 13, 1990, p. 17365). The law indicates that a program

or individual need only make "reasonable" accommodations or modifications in order to

meet the needs of persons with disabilities (Mehlman et al., 1997, p. 1386). The
employment provisions of the ADA only apply to companies with fifteen or more
employees (Castellano and Chapman, 1993, p. XV). Titles I through IV of the ADA go
into extensive detail regarding how the United States should comply with reasonably
accommodating the disabled with regards to: (I) Employment; (II) Public Services; (III)
Public Accommodations and Services Operated By Private Entities (transportation
services); (IV) Telecommunications (communication services); and (V) Miscellaneous
Provisions. Title V described briefly at the end of the ADA document addresses how the
ADA would regulate the provision of health insurance for the disabled. However, Title V
provides little guidance regarding how the anti-disability discrimination law would
prevent the disabled from being discriminated against regarding the denial of health
insurance by an employer and therefore allows interested parties the opportunity to
challenge the intent and language of Title V of the ADA.

With regards to protection from health insurance discrimination, persons afforded
anti-disability discrimination protections under the ADA are employed individuals who
have some level of employer provided health insurance coverage. Employer provided
health insurance policies often do not offer coverage for infertility treatments. Employers
evaluate a number of factors when considering the level of health care insurance they
offer their employees. Such factors include medical necessity of the procedure/service
and participant/employee demographics. According to Stolman (1994) in the United
States, the unemployed disabled may call on other government programs for assistance
with their health care needs (pp. 85-96). However, the “employed uninsured infertile”

whose company does not offer a health insurance program cannot call on anti-disability

discrimination laws to resolve insurance disputes. The “employed uninsured infertile”
must choose how they are going to finance this pursuit. The “employed uninsured
infertile’s” only resolve is to obtain necessary financial resources through alternative
avenues or choose not to pursue medical treatment because they simply cannot afford to
do so. Infertility treatment can provide men and women with access to a “basic human
good, the good of raising children” (Lauritzen, 1993, p. 135). Those affected by
infertility often struggle with their passionate conviction that they should receive some
form of financial assistance to overcome their infertility, allowing them to enjoy the basic
human good of raising their own biological child. However, many infertile cannot pursue
this basic human good because they do not possess medical insurance that adequately
covers infertility treatments.

Anti-disability discrimination laws also only cover persons with conditions that
satisfy the definition of disability. According to the ADA, an individual must have a
“physical or mental impairment that substantially limits one or more major life activities”
to qualify for protection from discrimination (ADA, 104 STAT.329, 42 USC 12102
Definition of Disability). Unfortunately, a great deal of confusion and controversy exists
about how the ADA should be interpreted and utilized in categorizing procreation as a

"major life activity".

Infertility Insurance Coverage Differs from State to State

After contacting the National Advocacy Association for the infertile, RESOLVE,
I was informed that the current situation regarding provisions for health insurance for

infertility treatments varies from state to state. Nearly twelve states now require

employer-provided health plans to cover certain kinds of infertility treatments (Arkansas,
Hawaii, Illinois, Maryland, Massachusetts, Montana, New York, Ohio, Rhode Island, and
West Virginia). Each state has to offer some level of infertility treatment. Some states
have meaningful mandates. But, the level of coverage mandated varies greatly among
these states. For example, Illinois mandates insurance carriers to cover comprehensive
diagnosis and treatment of infertility, including assisted reproductive-technology
procedures, but limits first-time attempts to four complete oocyte retrievals, and two
complete oocyte retrievals for a second birth. Insurance carriers are not required to
provide this benefit to businesses (group policies) of 25 or fewer employees. On the
other hand Montana mandates that Health Maintenance Organizations cover infertility
treatment as a "preventative health care service" benefit. Other states mandate that
infertility coverage must be offered, but purchasers can decide not to buy it (Resolve
National Infertility Association, current as of October 1998). Some health insurance
companies are being required to provide some level of health insurance coverage for
infertility treatments by their state governments. However, many other states do not

require that their insurance companies provide health insurance coverage for infertility.

Background: Silence and Shame

The infertile already struggle with negative images and feelings associated with
their inability to conceive. Moreover, it is possible that the social isolation the infertile
experience due to ignorance and being labeled disabled exacerbate shame. To prevent
unnecessary suffering, infertile women and men are often silent about how their

infertility affects them emotionally and financially. Being labeled disabled might provide

the infertile the Opportunity to overcome the social isolation they often experience. Or,
being labeled infertile and disabled might create barriers to overcoming the silence that
surrounds infertility.

Overcoming barriers that cause one to be silent about their personal struggles, life
plans and desires is important for resolving difficult ethical dilemmas. Most ethical
dilemmas involve conflicts of values. It could be argued that the “employed uninsured
infertile” are morally compromised. Pursuing having a biological child is intrinsically
valuable to most infertile. The “employed uninsured infertile” also have to find the
financial resources to help them achieve that goal. The “employed uninsured infertile”
have to choose whether or not to pursue medical treatment for their infertility and they
have to choose how they are going to finance this pursuit. For many reasons, this is a life
altering choice for most infertile. Silence surrounds those that choose to undergo medical
treatment for their infertility because women and men often have to endure painful
procedures and interventions, which directly impact upon their very private sexual lives.
The uninsured infertile might also have to cope with the financial hardship that often
accompanies pursuing having a child of your own. An uninsured infertile person can feel

shame for their situation.

Limited Dollars for Infertility Treatments

Another reason that the movement to label the infertile disabled is controversial is
that there is a limit to the amount of financial resources that can be allocated to the
infertile without having a major negative impact on those with traditional disabilities and

on those with traditional insurance coverage. Certainly, infertility is a great

disappointment and a regrettable fact for many women and men. However, defining
infertility as a disability is not in the best interests of society as a whole. Providing
expensive health care services to a relatively small group without taking into account the
health care needs of others would not represent a prudent use of limited resources.

A tension exists for the infertile and the disabled who demand that their particular
medical needs be covered by an employer-based health insurance program. When faced
with a limited source of funding for health care, the consequence is that there will be
fewer medical resources for everyone, not just those with particular medical issues.
Money could be directed away from vaccinations, prenatal care, and early intervention
programs such as cancer screening. Even more compelling is that thousands of infertile
men and women currently cover some portion of the costs associated with infertility
treatments out of their own pockets with out major complaint. So, instead of demanding
that employers cover all aspects of infertility treatments one has to wonder if it would be
reasonable to ask the “employed insured infertile” and “employed uninsured infertile” to
meet their employers half-way and “share” the costs associated with infertility treatments.
Many employers do just that right now. A just and caring society should address this
issue directly, rather than indirectly through the ADA. While this is a controversial issue
and there are a lot of conflicting opinions as to whether infertility treatments should be
covered by an employer-based health insurance policy, this is my notion of what a just
and caring society should do. However, I do not intend to defend this important view in

this thesis.

Overview of Literature

Numerous Opinions exist regarding whether infertility should or should not be
considered a disability. Others have thought and written about this topic, but no one has
asked exactly the question I address. The literature falls into these major groups, the
legal history of the infertile claiming to be disabled under the ADA and the outcome for
the infertile of the 1998 United States Supreme Court ruling that supported the labeling of
infertility as a disability. The following authors have addressed the legal history of the
infertile; Mosoff (1993), Brady (1996), Millsap (1996), Tomkowicz (1996), Jacobs
(1996), Gilbert (1996), Shoop (1996), Whitaker (1996), Lebowitz (1997), Mehlman et
al.(l997), and Friedman (1997). They analyze how the infertile have successfully or
unsuccessfully claimed to be disabled under the ADA as a means to maintain
employment while undergoing medical treatments for their infertility or as a means to
adjudicate entitlements to medical benefits for their infertility. Authors; Gross (1998),
Fein (1998), Kilbom (1998), Kaminer (2000), Clark (2000), and Gemignani (2001) have
directly commented on the outcome for the infertile of the 1998 United States Supreme
Court ruling that supported the labeling of infertility as a disability. They comment on
the appropriateness of the ruling with regards to infertility being labeled a disability
under the ADA. Some support labeling infertility a disability because it might protect
women seeking medical treatments for their infertility from being fired from their jobs.
For example, some women need to request time off from their employment to receive
hormone injections. Other authors question how the Supreme Court ruling will impact

insurance coverage for infertility in the future. They discuss the nature of the legal

10

reasoning and the possible future economic impact and ask whether the ruling makes
legal sense. They also wonder what the future consequences will be for the traditionally
disabled of extending the definition of disability to protect people without obvious
physical symptoms.

The following authors; Tomkowicz (1996), Millsap (1996), and Mehlman,
Durchslag, and Neuhauser (1997) have made important contributions towards
understanding how anti-disability discrimination laws work. They address whom the
laws might help and why they can help some people but not others. They also inform the
reader as to why, in the future, it might be difficult for the infertile to challenge perceived
injustices regarding denial of health insurance coverage for infertility under the ADA.
Lawyers might find it difficult to argue on behalf of the “reproductively disabled” that
their inability to conceive should be a covered benefit by their employer’s health
insurance policy when using the following terms: “sound actuarial data” and
“subterfuge”. These terms have proven difficult to apply and to qualify (Millsap, 1996,
and Mehlman et al.1997).

Sandra M. Tomkowicz provides an extensive legal history of how the infertile
have struggled with their personal goals of pregnancy, parenting and work. According to
Tomkowicz (1996) “by requiring an employer to make reasonable accommodations, the
ADA should now afford many couples who suffer from infertility the opportunity to
pursue the goals of pregnancy and parenting without sacrificing their status in the
workplace” (pp. 1052-1053). She analyzes how the Pregnancy Discrimination Act of
1978 (PDA), the ADA, the Family and Medical Leave Act of 1993 (FMCA) and the

Equal Employment Opportunity Commission (EEOC) may have helped or complicated

11

the issues surrounding how the employed infertile could maintain their employment
while pursuing medical treatment for their infertility. Importantly though, she identifies a
primary issue that exhausts court time and patience with regards to the ADA. The ADA
states that only those persons who can demonstrate that a major life activity is
substantially limited by an impairment can call on the ADA for protection. Yet,
tremendous confusion exists in the courts over whether procreation or the inability to
procreate should be considered a major life activity that can be substantially limited
(Tomkowicz, 1996, pp. 1065-1077).

D’Andra Millsap (1996) argues from a legal perspective that while most
employer-provided health insurance plans exclude infertility treatment coverage for
some, if not most, the ADA provides some hope for the infertile (p. 84). The employed
and insured infertile may be able to challenge infertility treatment exclusions. Millsap
(1996) believes that “there is a strong likelihood that most courts will find infertility to be
a disability and thus exclusion of infertility services a disability-based distinction” (p.83).
By referring to case law she describes how frustrating it can be to capture how infertility
may fall within the ADA’s definition of what constitutes a “major life activity”.
Importantly she identifies another caveat for understanding the intent of the ADA with
regards to the provision of health insurance for the disabled. The only protections for
people with disabilities excluded from insurance coverage are the requirements that
“denials be based on underwriting risks (or sound actuarial data) and not be used as a
subterfuge to evade the purposes of the ADA” (Title V of the ADA, p 1040 STAT.370).
Millsap (1996) addresses how difficult it is to argue on behalf of the infertile that their

inability to conceive ought to be a covered benefit by their employer’s health insurance

12

policy when using such confusing terms as “sound actuarial data” and “subterfuge”.
With regards to insurance discrimination claims, she claims that these terms “not only
cloud the issue of what constitutes a disability-based distinction for the infertile, but also
for the disabled in general” (Millsap, 1996, pp. 81-84).

Mehlman, Durchslag, and Neuhauser (1997) attempt to explain how the courts are
likely to interpret the ADA with regards to how this law will play a greater role in health
care decision making than previously anticipated. With their analysis “they hOpe to
provide concrete policy guidance to insurers, public programs, individual health
professionals, and providers” (p. 1386). These authors describe in great detail the
confusion surrounding how the ADA ought to impact disability discrimination law
regarding the denial of health care to the disabled. They identify several key issues.
First, the patient has to be disabled or will be disabled as a result of treatment to appeal to
anti-disability discrimination laws for protection. They are acutely aware of the
confusion surrounding the claim by some that infertility should be considered a disability.
Second, they point out that according to Title V of the ADA, “the denial of health care is
not protected, even if it is based on sound actuarial data and insurance underwriting, if it
is a subterfuge to evade the purposes of the law” (Title V of the ADA, p 1040
STAT.370). According to Mehlman et al., (1997) “The meaning of this provision is
currently being hotly disputed” (p. 1405). Similar to D’Andra Millsap (1996), they
identify that different views exist in the courts regarding what the term “subterfuge”
means with regards to the provision of health care for the disabled. Most importantly
with regards to this thesis, Mehlman et al. (1997) mention what the anti-disability

discrimination laws do not do “They do not prevent denials of health care based on

13

factors other than disability that also might be ethically obj ectional” (p. 1407). For
example, anti-disability discrimination laws do not prevent the “employed uninsured” or
the “unemployed uninsured” in this country from being denied access to a minimal level
of health care.

I have found only one author that directly addresses the notion that infertility
should not be considered a disability under the ADA because doing so would be unjust
for the traditionally disabled and just wrong. According to Kaminer (2000), “if the
primary purpose of the law is to end discrimination against the disabled, expanding their
employment opportunities and access to public accommodations, it is ill-served by
extending its reach to people who can’t reproduce without treatment” (p.1). She too
questions the appropriateness of labeling infertility a disability as a means to improve
insurance coverage for the infertile. However, Kaminer approaches her argument from a
different perspective than mine. Her claim is that when assessing competing claims of
suffering and injustice it is “troubling to see legislators responding to the needs of the
middle class for infertility treatments when they have disregarded the plight of poor-
fertile-women, who have been forced off welfare. . .” (Kaminer, 2000, p. 3).

In other words, people have explained the legal history and ambiguities of
stretching the ADA in this way and Kaminer addresses briefly the moral rightness of

trying to do so. However, I will be taking a broader ethical look at this issue.

14

Summary

There is a history in the United States of urging and encouraging reproduction in
the more privileged groups and discouraging or ignoring it in the less privileged groups.
1 will explore this historical perspective, in this thesis, by examining each of the
following problems in greater detail: (1) Classifying infertility as a disability would be
unfair because it would only help those who have insurance, and thus are already
privileged. (2) Classifying infertility as a disability would be unfair to those who are
traditionally considered disabled. (3) Classifying infertility as a disability would be to the
disadvantage of some infertile: those who feel stigmatized would be reinforCed in their
feeling that they must keep their situation entirely private. This thesis will argue that
dialogue attempting to classify the infertile as disabled should not be used to increase
access to insurance coverage. The label should not be extended this way, even if doing
so would increase insurance coverage for the infertile. Ultimately, I will suggest that
infertility should not be classified as a disability, because doing so would be unjust to the

uninsured and the disabled, and could potentially silence the infertile.

15

THE EMERGENCE OF INFERTILITY AS A DISABILITY

Recently, infertile women have called upon the ADA to help them reconcile their
conflicting goals of maintaining their employment while seeking medical treatment to
overcome their infertility. It became apparent during my research that a critical threshold
issue in attempting to classify infertility as a disability is defining the point at which a

particular activity constitutes a major life activity according to the ADA.

The ADA v. Protection for the Employed Infertile

The following two cases address whether the ADA provided women protection
from being fired from their jobs while seeking medical treatments for their infertility and
whether infertility could be considered a protected disability within the scope of the
ADA. The cases are Charline Pacourek v. Inland Steel and Lynn Gansar Zatarain v.
WDSU- Television, Inc. (Pacourek, 858 F. Supp.1396, Zatarian, 881 F. Supp.242). Each
woman claimed that she was discriminatorily discharged from employment as a result of
taking time off from her job to receive medical treatment for infertility (hormone
injections). In the hope of regaining employment both women filed anti-disability
discrimination charges against their employers thru the ADA (and several other anti-
discrimination statutes). They claimed that their employer’s conduct violated the ADA
(Pacourek, 858 F. Supp.1396, Zatarian, 881 F. Supp.242). However, the final legal
opinion in these two cases contradicted each other with regard to calling infertility a

disability under the ADA.

'16

The first case examined is Charline Pacourek, Plaintiff v. Inland Steel Company,
Defendant (Case No. 94 C 130, United States District Court for the Northern District of
Illinois, Eastern Division, July 27, 1994). The court reasoned that it was a "matter of
common sense" that Ms. Pacourek's condition "substantially limits the major life activity"
of reproduction. Pacourek started working at Inland Steel in March 1975. Pacourek
claimed that her employer started to unfairly scrutinize her requests for time off after she
informed Inland Steel, during October 1986, that she was to begin seeking medical
treatment for her infertility (Pacourek, 858 F. Supp.1396). In 1987, Pacourek began
seeing a doctor regarding her infertility. That same year, Pacourek missed several days
of work because of the infertility appointments. Four years later, Pacourek began to
receive hormone injections for her infertility. Pacourek apparently missed work on at
least some of the days on which she underwent treatment (Pacourek, 858 F. Supp.1393).
On February 12, 1992, Pacourek was officially told that her attendance would be
monitored closely and her employment would be terminated if her attendance did not
improve. On May 21, 1993, Pacourek was told that her employment was terminated. On
January 7, 1994, Pacourek filed a lawsuit claiming that she was discriminatorily
discharged because she had a disability, infertility, under the ADA (Pacourek, 858 F.
Supp.1396). United States District Judge James H. Alesia refused to dismiss her claim
and concluded that Pacourek was disabled according to the ADA, and therefore has a
claim under the ADA (Pacourek, 858 F. Supp.1404-1405). This was one of the first legal
cases to recognize infertility as a disability under the ADA.

On the other hand, in Lynn Ganser Zatarian, Plaintiff v. WDSU-Television,

Defendant (Case No. 94-1018, United States District Court, E.D. Louisiana, Jan. l8,

l7

1995), Zatarian lost her case. The court did not agree that she suffered from a disability
(infertility) covered by the ADA. Zatarian had a long- standing relationship with her
employer as a prime-time news anchor at WDSU. In July 1992, Zatarian informed her
employer that she needed to pursue infertility treatment. She needed to receive hormone
injections for her infertility. Zatarian had been allowed to stagger her hours at work for
months to accommodate her infertility treatments. Then, in November of 1992, WDSU-
Television allowed her contract to expire and did not renew it. Zatarian claimed that she
suffered from a disability covered under the ADA and thus was discriminatorily
discharged by WDSU in violation of the ADA (Zatarian , 881 F. Supp. 241 ). District
Judge, J. Vance stated that: “finding ‘reproduction’ to be a ‘major life activity’ would be
inconsistent with the illustrative list of major life activities provided in the ADA
regulations. The list includes, but is not limited to: walking, seeing, speaking, breathing,
learning, and working” (Zatarian, 881 F. Supp.243). Judge Vance felt that it was
inappropriate for his court to address the notion that infertility be considered a disability
under the ADA. It was his opinion that: “Treating reproduction as a major life activity
under the ADA would be a conscious expansion of the law, which is beyond the province
of this court” (Zatarian, 881 F. Supp.243).

Both the Zatarian and Pacourek cases brought forth the issue of whether
infertility could be considered a disability protected by the ADA. Central to both cases
was whether reproduction, obviously the primary activity affected by infertility, is a
major life activity.

The ADA's stance that employers must provide reasonable accommodations for

individuals with disabilities has helped to protect individuals like Charline Pacourek from

18

losing their jobs while they pursue infertility treatments. To date, however, only a
fraction of those affected by infertility have benefited from legal challenges utilizing anti-

disability discrimination laws to improve access to health insurance.

The Equal Employment Opportunity Commission and the
ADA’s Definition of “Major Life Activity”

The employed infertile seeking to improve access to health insurance are
challenging the ADA’s definition of what constitutes a “major life activity” in the courts.
The average person in the general population can certainly procreate with little or no
difficulty. Accordingly, the logical extension is made that infertile persons are disabled
since they are unable to participate in the major life activity of reproduction. In March of
1995, after numerous legal cases expressed difficulty in understanding how procreation
ought to be categorized within the context of "major life activity", the primary federal
agency charged with enforcing the ADA, the Equal Employment Opportunity
Commission (EEOC), encouraged a broad reading of what constitutes a "major life
activity" (Tomkowicz, 1996, pp. 1063-1071). In the EEOC Disability Memorandum, the
EEOC implicitly encouraged a broad reading of the regulatory definition of major life
activities by stating that "major life activities are those basic activities that the average
person in the general population can perform with little or no difficulty" (EEOC Comp].
Man. (BNA) 902, at 1, Mar. 14, 1995). A consequence of the recommended broad
reading is the notion that infertile individuals whose physical impairment prevents them
from having children of their own should be afforded the protection of the ADA.

Some infertile have moved the dialogue regarding anti-disability discrimination

into a new realm. Employed and receiving some form of health insurance coverage from

19

their employer, infertile women (and men) have begun to claim that their employers have
discriminated against them by denying them insurance coverage for their infertility

treatments.

A Successful District Court Case and Health Insurance Coverage for Infertility

The following infertility case called upon the ADA to increase access to health
insurance. Anita Bielicki and all others similarly situated v. the City of Chicago (Case
No. 97 C 1471, United States District Court for the Northern District of Illinois, Eastern
Division, May 8, 1997) received a fair amount of recognition in the medical and legal
fields because of the outcome. From approximately August 1994 to October 1994,
Bielicki, a Chicago Police Officer, received treatments for infertility, including tests and
in-vitro fertilization. From approximately October 1994 to August 1995, Bielicki
received medical treatments and tests related to her pregnancy. On June 21, 1995, the
City of Chicago informed Ms. Bielicki that she was denied health care coverage for her
infertility treatment and treatment related to her pregnancy. Administrators of the City of
Chicago’s health plan ("the Plan") determined that the medical services she received were
infertility treatments and therefore not a covered benefit. On January 4, 1996, Bielicki
filed a charge of discrimination in violation of the ADA (and several other anti-
discrimination statutes) on behalf of herself and all others similarly situated (1997 US
Dist. LEXIS 6880: 2). Bielicki filed action challenging the City of Chicago's policy of
excluding medical benefits for infertility treatments. She claimed: “That her condition-
infertility- substantially limits one or more of her major life activities, including

procreation, reproduction, conception, pregnancy and the birth and raising of her own

20

children” (1997 US Dist. LEXIS 6880: 1-2). Once again, two primary issues in Bielicki's
case were whether her claimed disability, infertility, constitutes a disability within the
context of the ADA and whether procreation constitutes a "major life activity" within the
scope of the ADA. The City of Chicago's motion to dismiss Bielicki's claim was denied
by the sitting judge in Federal Court, basically validating that there may be a right to
fertility services under the ADA. On January 29, 1996 United States District Judge,
Suzanne B. Conlon ruled that infertility is a disability under the ADA and forced the City
of Chicago to settle the class action lawsuit. Conlon ruled that infertility is a disorder of
the reproductive system under the ADA (Bielicki v. City of Chicago, No. 97 C 1471,
1997 WL 260595 (ND. 111. May 5, 1997)). Ultimately, the City of Chicago reached a
settlement with Bielicki and all others situated, and agreed to cover all medical treatments
related to infertility retroactive to March 3, 1987. She fought to increase access to

treatments and in doing so got access.

1998 United States Supreme Court Case that Supported
Labeling Infertility a Disability within the Context of the ADA

The United States Supreme Court has indirectly supported the claim that
infertility could represent a disability under the ADA. In Randon Bragdon, D.M.D. v.
Sidney Abbott, a person who was human deficiency virus (HIV) positive but not yet
diagnosed with acquired immune deficiency syndrome (AIDS) was considered disabled
because her condition impaired her willingness to have children (118B S. Supp.2196-
2218). Sidney Abbott sued dentist Randon Bragdon in 1994 because he refused to work
on her teeth in his dental office in Bangor, Maine. The dentist offered to perform the

needed dental services at a local hospital at no extra charge. However, the costs

21

associated with a hospital admission would have to be covered by Abbott (118B S.
Supp.2198). Abbott told Bragdon she had HIV, the virus that causes AIDS. She argued
that, under the 1990 ADA, she was disabled because the HIV infection prevented her
from having children without exposing the fetus and her partner to the disease. The
decision by the United States Court of Appeals for the First Circuit in this case concluded
that a person with asymptomatic HIV is substantially limited in the major life activity of
reproduction and is thus considered disabled under the ADA (912 F. Supp. 580
[Me.l995]). The majority opinion by the United States Supreme Court in June of 1998
was that "reproduction falls within the phrase major life activity". On June 25, 1998, the
United States Supreme Court concurred with an earlier Appellate Court decision that
infertility could represent a disability under the Americans With Disabilities Act (ADA)
because procreation falls within the category "major life activity" (1188 S. Supp.2205).
Justice’s Kennedy, Stevens, Souter, Breyer, and Ginsburg held that “HIV infection is a
“disability” under the ADA, even when the infection has not yet progressed to the so-
called symptomatic phase, as a physical impairment which substantially limits the major
life activity of reproduction” (118B S. Supp.2196). However, dissenting views held by
Chief Justice Rehnquist, Justice’s Scalia, O’Connor and Thomas were that Randon
Bragdon failed to demonstrate that any of her major life activities were substantially
limited by her HIV infection (118B S. Supp.2216). They also expressed the opinion that
“Respondent’s argument, taken to its logical extreme, would render every individual. . ..
disabled here and now because of some possible future effects” (1188 S. Supp.2216).
While this was a substantial victory for people who are HIV positive, the benefits for the

infertile were not immediately evident.

22

Conclusion

As I stated earlier, the ADA mandates that only those persons who can
demonstrate that a major life activity is substantially limited by an impairment can call on
the ADA for protection from discrimination in the workforce. After years of legal
controversy as to whether reproduction could be considered a major life activity under
the ADA and as to whether infertility could be considered an impairment under the ADA
a controversial ruling came down from the United States Supreme Court in 1998. A legal
case which appeared to have nothing to do with infertility and which began in district
court and made it’s way to the United States Supreme Court decided in favor of labeling
infertility a disability under the ADA. The United States Supreme Court held that
infertility could be considered an impairment and reproduction could be considered a
major life activity under the ADA (118B S. Supp.2196-2218). Therefore, an “employed
infertile” person could now be considered disabled under the ADA because their major
life activity of procreation is impaired by their infertility. A potential consequence of this
ruling is that now the “employed insured infertile” could claim discrimination under the
ADA if their employer denied them health insurance coverage for their infertility

treatments.

'23

THE PERPETUATION OF UNFAIRNESS FOR THE INF ERTILE
AND THE EUGENICS MOVEMENT
Expanding the scope of the ADA so that infertility is a recognized disability
might make infertility treatments available to the “employed insured infertile” because
these individuals are employed and have some form of employer-based health insurance.

99 ‘6

In fact, some might consider the “employed insured infertile privileged” in the sense
that they have certain benefits available to them that the “employed uninsured infertile”
do not. They usually possess some form of employer provided health insurance for
themselves and their family members and the ADA might provide them some protection
from being denied health insurance for their infertility treatments. However, the ADA
can not protect the ”employed uninsured infertile” from being denied health care for their
infertility because their employers do not offer any form of health insurance. Some
might suggest that the “employed uninsured infertile” are “less privileged” because they
might not possess the resources necessary to privately finance treatment for their
infertility and/or properly care for their future children. Some might question the
worthiness of women having children when they can not afford health insurance to care
for themselves let alone their children. The belief that only the more “privileged”
deserve to have children is found in ordinary conversation today, as well as in the history
of attitudes toward infertility. The attitudes and judgments the infertile encountered were
particularly heightened in the United States in the early 1900’s. In the early 1990’s

reproductive behavior in the United States was scrutinized by a society that was

concerned about the “quality and character of its future citizenry” (May, 1995; Marsh and

24

Ronner, 1996). Reproductive behavior during the early twenty-first century is taking

place in a society struggling to meet the health care needs of all its citizens.

Brief History of the Eugenics Movement in the Early 1990’s

May claims that during the early 1900’s childlessness became not just a matter of
personal circumstance, but also a function of public policy (1995, p. 96). To illustrate
~ this she analyzes, in depth, the impact the eugenics movement had on different classes of
women with regards to parental worthiness and public policy. The basic premise of
eugenics is that the [white] human race could be improved if [white] human beings could
take charge of their own evolution. Eugenics can be defined as “pertaining or adapted to
the production of fine offspring, especially in the human race” (The Oxford English
Dictionary, Vol. 5, 1989, p. 433). In the early 1900’s this usually meant that white men
and women of pure European descent were encouraged to reproduce. White men and
women are defined as “a person of European extraction who lives outside Europe; hence
a white person, especially in a country with a predominately non-white population” (The
Oxford English Dictionary, Vol. V, 1989, p. 442). From the late 1800’s through the early
1900’s the white man considered himself superior to the all non-White’s “A white man’s
country was considered a country of superior excellence. It was a country governed by
those citizens who are white. ‘This is a white man’s country and the white people
intend to rule it now and forever’” (A Dictionary Of American English On Historical
Principles, Vol. IV, 1944, p. 2478). Believers of the eugenics movement in the early
1900’s strongly encouraged some white Anglo-Saxon American citizens to procreate.

Anglo-American’s are defined as “an American citizen of English descent” (A Dictionary

25

Of American English On Historical Principles, Vol. I, 1938, p. 51). Anglo-Saxon’s are
defined as “pertaining to English people or culture in Great Britain, its colonies and
dominions and the United States” (A Dictionary Of American English On Historical
Principles, Vol. I, 1938, p. 52). Some Anglo-Saxon’s, during the late 1800’s and early
1900’s, believed that their race was superior to other non-white races. They wanted to
“imbue [other races] with English character or culture” “this race is destined to
dispossess many weaker ones, assimilate others, and mould the remainder, until ...it has
Anglo-Saxonized mankind” (A Dictionary Of American English On Historical Principles,
Vol. I, 1938, p. 52). Therefore, those Anglo-Saxon American women who where thought
to produce genetically fine offspring were encouraged to reproduce. According to May
(1995), many white Anglo-Saxon American women and men were considered
"desirables", intelligent and thought to have "good character" and were encouraged to
have children (pp. 61-93). Some might even refer to this population as “privileged”
because they were favored for reproduction over other races in the early 1900’s. Also
according to May (1995), non-whites, and individuals who were mentally challenged
[white and non-white] were considered to be “undesirables” or of “poor character”.
During the early 1900’s anyone who was non-white (i.e., black, oriental and American
Indian races) were often discouraged or prevented from having children (pp. 95-125).
The logical extension could be made that non-white races and the “feeble-minded” may
have been considered “less privileged” because they were not considered worthy of

producing desirable children.

26

Infertile White Women and the Eugenics Movement in the Early 1900’s

The eugenics movement gathered public support after the turn of the twentieth
century. It appears that the primary objective for developing eugenics programs was to
adopt policies that encouraged the creation of a superior white class for generations to
come. Women were indispensable to the bearing of children, and they often became
willing and unwilling participants in the eugenics movement. Some might argue
however that during President Theodore Roosevelt’s era some childless white women
were unfairly pressured to procreate:

“As part of their campaign, crusaders for eugenics launched the first major attack
against the childless, who, in President Roosevelt’s words, were shirking their duty to the
nation through “willful sterility” (May, 1995, p. 62).

During the Roosevelt era it was hoped that the children of a particular group of white
Anglo-Saxon American men and women would become the future leaders of America
(May, 1995, p. 62). Those women who were not contributing to his campaign to create a
superior class of future citizens were not fulfilling their obligation to their country. There
was a fear that any decline in a white woman's devotion to procreate would lead to race-
suicide (May, 1995, pp. 61-93). Race-suicide in the early 1900’s is defined as a
voluntary restriction of births, within a particular race, to such a point that the population
cannot maintain its numbers” (A Dictionary Of American English On Historical
Principles, Vol. III, p. 1880). The belief that Anglo-Saxon men and women were
superior in intellect, social standing and accomplishment to members of non-white
groups encouraged those who believed in the eugenics movement to argue against the use

of birth control to prevent race-suicide amongst the white population. However, infertile

27

ill

Anglo-Saxon American women were unable to comply with President Roosevelt’s
demand to produce children.

Political, institutional, medical and legislative measures that encouraged some
Americans to become parents were particularly devastating for the infertile in the early
twentieth century. Infertile white married women during President Theodore Roosevelt’s
era likely had to endure social isolation because they were unable to produce “naturally
superior” children. During the 1900’s “the political character of the United States, a
nation that depended upon the biological character of its people, was dependent upon
women to bear and rear the next generation of citizens” (The Readers Companion to US.
Women’s History, 1998, p.178). Therefore, women were as important to politics as men
were during President Theodore Roosevelt’s era. Because they were unable to contribute
to the New World order, many white women, who were involuntarily childless, had to
endure a great deal of public shame and humiliation. According to May (1995), they
were considered by many to be "unworthy" and “un-American”. They were considered
unproductive, deficient and "barren" in the literal and figurative sense (pp. 26-29, 102-
127, 131-134). They often found themselves condemned for selfishness if they bore no

children.

Poor Women and Non-White Women and the Eugenics Movement

During my research of the early 1900’s Eugenics movement it appears poor
women and women of color had to endure very different levels of persecution during the
first half of the twentieth century. Political and religious leaders in the early twentieth

century did not want this segment of society breeding (May, 1995, pp. 95-125). They

28

believed anyone who was not a white Anglo-Saxon American citizen was inferior in
intellect and social standing. May (1995) claims that any means to prevent the
uneducated non-white population from having children was to be exercised. "It is the
relatively uneducated women who keep the United States population on the rise" (p. 134).
However, those who believed in the eugenics movement wrongly believed that the non-
white population was producing more children than the white population. The highest
birthrate in the earlyl900’s was among the educated white middle-class (May, 1995, p.
134). The fertility rate among black American women however was dropping in the
early 1900’s. “Childlessness rose among ever-married black women from 16 percent in
1910 to 26 percent in 1940. By the mid-1940’s, the infertility rate was more than twice
as high for black women as for white women, owing to poverty, disease, and poor health
care” (May, 1995, p. 75). Racial categorization can be very misleading. Those who
believed in the eugenics movement during the early 1900’s may have unfairly targeted
the black population as indirectly contributing to the white population loosing its’
predominance. It appears by these statistics that the white population might have been
reproducing at a higher rate than the black population. To be more specific the fertility
rate among one population, the black population, was actually dropping off. Therefore,
the perception that the white population was voluntarily restricting births to such a point
that the population could not maintain its numbers was a false perspective. In fact,
poverty, the lack of education and the lack of adequate health insurance can directly

contribute to the lack of fertility.

29

Worthiness of Who Becomes a Parent in the 21" Century

During the late twentieth century onward discussion regarding infertility and
insurance coverage is often framed within the context of who is worthy to become a
parent. The worthiness of who ought to become a parent is often determined based on
the availability of, or access to, the financial resources needed for infertility treatments.
The National Center for Health Statistics estimates that l in 12, or 4.9 million American
couples are infertile (Lee, 1996). Many of these couples have no access or limited access
to medical treatment for their infertility. Public attitudes and values often suggest that the
“employed uninsured infertile” and “unemployed uninsured infertile are not worthy of
becoming a parent because these women and men often do not possess health insurance.
The judgment made is that if the uninsured infertile cannot afford medical coverage for
their infertility, then they are unworthy of having a child because they obviously do not
possess the resources necessary to properly raise a child.

Elaine Tyler May's insight is very timely. She tells us "although procreation is a
profoundly private experience, reproductive behavior takes place in a society that is
deeply concerned about who becomes a parent and under what circumstances. This
concern is not new, but the public's stake in who has children and who does not has
changed over time" (May, 1995, p. 2). As discussed in detail earlier, the eugenics
movement in this country during the early 1900’s was instrumental in the public’s
determination of worthiness to become parents in this country. One could argue that

from the infertile person’s perspective a fact that has not changed over time is that the

'30

public's concern about who has children is determined by whether one has the financial
resources or not to help them achieve a pregnancy. But, using the ADA to address
perceived injustices in employer-based health insurance policies for the infertile only
helps the privileged, employed and insured infertile. Regrettably an unfair situation
continues to exist for the less privileged in the United States. Similar to the non-white
populations of the early 1900’s, the “employed uninsured, infertile” in the early twenty
first century appear to be the less-favored of society. However, their worthiness to
reproduce is now judged by whether they have medical insurance instead of their ability

to create genetically “superior offspring”.

31

THE “REPRODUCTIVELY DISABLED” AS A USURPATION OF
THE PROTECTIONS OF THE ADA
One objection I have to stretching the scope of the ADA is that the ADA was
meant to help those who are poor because of a disability: the disability keeps them from
keeping a job, and keeps them from having adequate health insurance. The privileged
infertile who have been able to claim that they have a “reproductive disability” under the
ADA in order to gain access to insurance coverage have overextended the original

purpose of the ADA.

The Evolution of the Disability-Rights Movement

My research into the evolution of the ADA has revealed that fighting for equal
rights is the founding principle of the disability-rights movement and the creation of the
ADA. When the disabled testified before Congress regarding the creation of the
Americans with Disabilities Act of 1990 their language and their stories were to the effect
that what people with disabilities have to surmount is discrimination more than
impairment (Garland-Thomson, 2001, p. 812). They were fighting as a group to become
independent productive members of society. The message heard over and over again
from the disabled community was:

“We don’t want any favors; all we want is for others to judge us on the basis of
our abilities and not on the basis of our disabilities; to judge us on the basis of facts and
not on the basis of fear, ignorance, prejudice, or patronizing attitudes. Remove artificial
barriers that prevent us from fully participating in the mainstream of society. That’s all

we want and expect.” (Senator Harkin: Congressional Record-Senate, July 13, 1990, p.
17368)

32

The Americans with Disabilities Act of 1990 has allowed the disabled (those who
have overcome the oppressive narratives and stereotypes usually applied to disabled men
and women who have been unable to work and become independent human beings) to
uniquely reshape our entire culture. Anti-disability discrimination laws evolved out of
the struggles of people whose limitations or sufferings are much greater because of their
physical and or mental conditions. What physical and mental conditions are considered
normal and what are considered abnormal is defined by the social and cultural
expectations of a society. Society not only selects which characteristics are to be
considered normal, but it also defines what characteristic will be considered a disability.
Social, ethical and policy questions arise when assessing an individual's health and the
range of opportunities available to people in the population who do not meet that standard
of species—typical functioning. These individuals are estimated to make up one-sixth of
the United States population (Americans with Disabilities Act (ADA), 1990, PL. 101 -
336, Section 2). The Americans with Disabilities Act partly endorses the perspective that
disability is a natural human experience that society should accommodate:

“Congress finds that... individuals with disabilities are a discrete and insular

minority who have been faced with restrictions and limitations, subjected to

a history of purposeful unequal treatment, and relegated to a position of

political powerlessness in our society, based on characteristics that are

beyond the control of such individuals and resulting from stereotypic

assumptions not truly indicative of the individual ability of such individuals

to participate in, and contribute to, society...” ,

(Americans with Disabilities Act, 1990, PL. 101-336, Section 2).

This perspective was developed based on the life experiences of traditionally disabled

women and men who tended to be overwhelmingly poor and underemployed. The

govemment’s efforts on behalf of the traditionally disabled women and men have been

33

aimed to improve economic productivity and self-support "the combination of segregated
education and systemic discrimination in employment has a devastating effect on the

income and employment prospects of women with disabilities" (Mosoff, 1993, p. 109).

The Social Construction of “Disability” and the Infertile

The idea that disability is socially constructed is critically important when
assessing individual claims of "reproductive disability" under the ADA. Consideration
must be given to the consequences for the disabled community in total. Mosoff (1993)
states that "in the context of growing social awareness and developing jurisprudence on
disability rights, individuals with fertility problems have appropriated a disability rights
discourse to gain access to resources and services forged by earlier efforts at advocating
very different disability issues" (p. 112). The truly disabled, as stated earlier, fought for
the right to become economically self-sufficient. They also fought for respect. However,
Bragdon, Pacourek and Bielicki effectively used disability rights language, which was
pioneered by the disabled community, for their own personal gain. The court record
documents that some employed and insured infertile adopted anti-disability
discrimination language to advance their own individual needs. They used language that
the disabled community historically used to lobby for a more inclusive society. The
language that the infertile has adopted includes such principles as accessibility,
reasonable accommodation, dignity, respect, and full participation in society (Mosoff,
1993, p. 11 1). Those infertile that have taken their injustice to the courts (those who have

challenged their employer’s health insurance plan regarding coverage for infertility)

34

believe that their right to pursue the opportunity to conceive a child of their own has been
impeded by either cost or limited resources.

Using disability rights language to advance the cause of those affected by
infertility is problematic. The infertile are using disability “rights” language in a different
context. The privileged infertile are fighting for their individual equal “rights” to
financial resources for their infertility. The truly disabled have historically used their
“rights” language to fight for their right to be equally respected and independent
members of society.

Women who have claimed a "reproductive disability" have adopted the group-
oriented disability discourse to gain access to resources for individuals. Some women
began defining themselves as "reproductively disabled" in the 1980's and 1990's as a
means of adj udicating entitlements to benefits. Women claim that insurance companies
place restrictions on their reproductive choice and autonomy. Women who are having
difficulty conceiving children or carrying their pregnancies to term argue for their right of
access to costly reproductive technology, especially in-vitro fertilization (WP) and
gamete intrafallopian transfer (GIFT). “In IVF, an egg is fertilized in a plastic petri dish
and then implanted in the womb. In GIFT, sperm and egg are transferred into the
woman’s fallopian tube, where it is hoped fertilization will take place” (101St Congress,
1St Session, House of Representatives, Dec. 1, 1989, p. 3). Failure to control what
happens to their bodies motivated some infertile couples to challenge whatever practice
or policy was depriving them of control. Those who have embraced being labeled
"reproductively disabled" feel that they have lost control over what happens to their

bodies. They feel that they have been unjustly denied the opportunity to pursue certain

35

treatment options. They want to feel less like a victim and more empowered to pursue a .
host of infertility treatment options that they feel they have a right to, but which are

currently not offered as a covered benefit under their medical insurance plan.

“Reproductive Disability”
And Understanding Disability in the Traditional Sense

It is possible that the privileged infertile have been dishonest in appropriating the
label disabled. Unlike the traditionally disabled in our country, women who have
recently claimed that they have a "reproductive disability” tend to be educated,
employed, married and not poor. One dissenting Justice who participated in the
controversial Supreme Court decision agrees with the notion that some infertile have
been dishonest in appropriating the label disabled. In a split decision, Justice O’Connor
(dissenting in part) states that:

“In my view, the act of giving birth to a child, while a very important part of the
lives of many women, is not generally the same as the representative major life activities
of all persons- “caring for one’s self, performing manual tasks, walking, seeing, hearing,
speaking, breathing, learning, and working”- listed in regulations relevant to the
Americans with Disabilities Act of 1990.” (Supreme Court Reporter, Vol. 118B,
Decided June 25, 1998, p. 2217)

It is possible that the United States Supreme Court diluted and distorted the intent
of the ADA. Disability rights activists have fought to avoid the persistent stereotypes of
disability and to create new ways to understand disability. Creating new ways to
understand disability is a difficult process. Disabilities rights activists might contend that
by calling the inability to procreate a “reproductive disability” the courts have failed to

advance the idea that “disability is integral to a person’s character and life experiences,

rather than a defect to be eliminated” (Garland-Thomson 2001:B12). One might argue it

36

is possible that many of the “reproductively disabled” who have called upon the courts to
increase access to health insurance coverage for their infertility do not understand what it
means to be disabled in the traditional sense. Their primary objective is to overcome
their infertility, not to begin to understand how disability is integral to a person’s
character and life experiences.

Nevertheless, the ADA route has worked to gain health insurance benefits for
some infertile. Discussion regarding insurance coverage for infertility can now be framed
within the context that because one has a “reproductive disability” they should have
access to the health care treatments required to overcome their disability. According to
Mosoff (1993) “to increase access to medical resources previously denied them, some
infertile women and men ‘invoke rights discourse’, in part by adopting a disability label,
and I. use the language of equality to develop objectives of individual autonomy" (p.
122). Advocacy groups for the infertile feel that when people approach their employers
and ask that they provide infertility insurance coverage for their "reproductive disability",
the Supreme Court has provided them a powerful tool and boosts their chances of getting
a positive result. RESOLVE, the national advocacy program for the infertile explicitly
states in their FAST FACTS newsletter that employers, insurance companies, and
legislators should now take steps to follow the Supreme Court's lead and recognize that
reproduction is a major life activity covered under the ADA (RESOLVE, January 1999).
Advocates for the infertile believe the Supreme Courts ruling is a step in the right
direction to improve health care coverage for the infertile and improve workplace
accommodations for employees who are undergoing infertility treatments. Past lower

court rulings directly addressing issues related to infertility had mixed results regarding

'37

insurance coverage and workplace accommodations. Now, many infertile believe that
the Supreme Court ruling that reproduction is a major life activity will greatly improve
the chances that future court cases will be decided in favor of those facing discrimination
because of infertility (RESOLVE January 1999).

To date, however the infertile who have adopted the equal rights language of the
disabled community have been informed, educated, employed and insured. The voices of
one of the fastest growing populations in the United States, the employed and medically
uninsured, cannot be heard in the same forum. Those that are afforded the protections of
the ADA when addressing health insurance disputes are disabled and employed
individuals who have some level of employer provided health insurance coverage
(Tucker, 1991 , p. 235). The employer is required to provide equal access for the disabled
to whatever health insurance coverage is offered for other employees. The employed
infertile woman or man whose company does not offer an employer health insurance

program at all cannot call on the ADA to resolve insurance disputes.

“Employed Uninsured Infertile” and Representation in
Health Care Policy Decision Making

I am going to suggest that it is unjust to focus on the needs of a few infertile- the
privileged employed and medically insured. One could argue that the “employed
uninsured infertile” should have the same opportunities to receive some form of financial
assistance for their infertility treatments. To begin to improve the situation of the least
favored in our society, for example the “employed uninsured infertile”, it may be that
ethicists need to force attention towards power and address how the disadvantaged often

lack the power to overcome their oppressive situations. Rawls’ theory of "justice as

38

fairness" assumes the idea that the principles of justice are agreed to in an initial situation
that is fair (Rawls, 1971, p. 12). But, an unfair and unjust situation exists in our society
when a class of disadvantaged people, medically uninsured infertile, cannot access
medical treatment to address their infertility. Rawls (1971) acknowledges that we are
born into particular classes, races and gender: "Each person finds himself placed at birth
in some particular position in some particular society, and the nature of this position
materially affects his life prospects" (p. 13). He also acknowledges that for justice to
exist we need equal liberty. “If some have more votes than others, political liberty is
unequal; and the same is true if the votes of some are weighted much more heavily, or if
a segment of society is without the franchise altogether (Rawls, 1971 , p. 247). However,
he does not explicitly address how difficult it is for disadvantaged members of society to
gain equal liberty.

Disenfranchised and marginalized medically uninsured Americans need to focus
first how to obtain the power to influence policies that would change their difficult
situation. Wolf (1996) suggests that “if the account of justice begins with an
understanding of oppression, it can call into question the structures in which goods are
produced and assigned value, as well as how they are distributed" (p. 355). The insured
and employed infertile women and men who have had the courage and resources to
question why their employers limit coverage, or often do not cover infertility treatments,
have gathered the strength and power of the United States Supreme Court. They can now
challenge how employers and insurance companies allocate health care resources for
infertility services. The uninsured employed infertile currently finds themselves

powerless to change their oppressive situation. Any reform that takes place regarding the g

39 i
l

just distribution of health care resources and which addresses the just distribution of other
social goods must ensure that when beneficial care must be denied the burden does not
fall unjustly on any one group of people (Wolf, 1996, p. 357). The medically uninsured

have unjustly carried this burden.

Summary

My research has revealed that the ADA clearly has weaknesses regarding its
vague definition of disability and its oversight of medical insurance provision for the
disabled community:

“Mr. President, the ADA leaves many such troubling questions unanswered. The
bill is a legislative Rorschach test, an inkblot whose meaning and significance will be
determined through years of costly litigation. While I voted for this bill because I believe
that the rights of people with disabilities must be protected, I did so with the awareness
that it will engender wave upon wave of court rulings that will extend the bill far beyond
its intended purposes.” (Senator Armstrong, Congressional Record- Senate, July 13,
1990,p.l7375)

Senator Armstrong was visionary in his prediction that the ADA would encounter
problems with how it should be interpreted especially with regards to health insurance
protections for the disabled. Interestingly, all anti-disability discrimination lawsuits filed
to date by the infertile to protect their employment or to fight for access to medical
insurance coverage for their infertility have revealed that the ADA is a legislative
nightmare. However, the ADA route does not resolve difficulties in providing medical
insurance for the “employed uninsured infertile” and all other medically uninsured in this
country. The ADA provides limited opportunity for the traditionally disabled and the

recently “reproductively disabled” communities to challenge the injustices of inadequate

medical insurance coverage for their needs. But, the ADA cannot help the

40

disenfranchised and marginalized- “employed uninsured infertile” improve access to

health insurance coverage for their infertility treatments.

41

THE ADDITIONAL LABEL DISABLED AND THE POTENTIAL TO DISCOUARGE
THE INF ERTILE FROM OPENLY DISCUSSING ISSUES REGARDING
INADEQUATE HEALTH INSURANCE COVERAGE

In this section I am going to question whether negative stereotypes will be
perpetuated for the infertile if they are also labeled disabled. Historically, society has
defined infertility in America as a pitiable personal problem relegated to the private realm
of compassion and medicine or a selfish choice, but inappropriate to discuss in the public
arena. Alternatively, activism associated with the disabled, who have fought for equal-
rights “while eschewing stereotypical stories about courageous people who overcame
their disabilities or found serenity in their suffering” may cause the infertile to become
more vocal about their needs regarding financial assistance for their infertility (Garland-

Thomson, 2001, p. B1 1)

Representation, or Lack Thereof, of Infertile
Personal Narratives in Literature

Reviews of the literature concerning infertility reveals that the less privileged in
the infertile community have been largely underrepresented. Authors often focus on the
consequences of infertility for the educated white middle and upper class women rather
than on the effects of involuntary childlessness on other races and classes. A common '
anecdotal story is that women who have postponed having children to further their
education and careers later find out that they are unable to conceive a child of their own.
Those individuals who often write about what the infertile experience in their lives are-

lawyers, physicians, philosophers, psychologists, and feminists- not the infertile. What is

42

 

apparent is that the voices of infertile poor and infertile women of color are often silent.
Women from all races and classes find great joy and personal fulfillment in having
children of their own. However, according to May (1995), "the poor and people of color
are even more devastated by childlessness than the affluent white middle class, because
they experience proportionately more of their total feelings of satisfaction in the family
than do the affluent and they were also less likely to afford infertility treatment" (p.134).
May and Marsh and Ronner attempted to enrich their historical accounts of
infertility by including the voices of the childless themselves. Marsh and Ronner combed
memoirs, hospital records, women's magazines and medical journals in an attempt to
capture American attitudes towards infertility from the perspective of the infertile. They
illustrate that historically the pressure for women to seek medical treatment for their
infertility comes not from the "medical establishment", but rather from the cultural _
expectation that most women will be mothers and that women tend to internalize this
belief (Marsh and Ronner, 1996, p. 252). By the twentieth century a societal expectation
was that a successful marriage and healthy family life demanded the presence of children.
This is revealed in the statement of a twenty-year-old woman who, upon seeking advice
for her possible infertility, explained that, "My only goal in life is to become a mother"
(Marsh and Ronner, 1996, p. 153). May (1995) states that she wanted to include "the
voices of the childless themselves". She sent an "author's query" to all the newspapers
and journals in the United States which targeted about 50,000 subscribers asking the
voluntarily and involuntarily childless to write to her. She received replies from "more
than 500 people" (p. 4). A common theme described by each author is that married

childless women often found their "condition" intolerable and aggressively sought

43

medical intervention to help them overcome their infertility. However, what was not
evident from the narratives solicited by the authors was whether or not reflections by the

infertile poor were represented.

Cultural and Social Events that helped to Move a
Very Private Situation, Infertility, Public

Ronner and Marsh (1996) identified some key cultural and social events that
motivated women, physicians and the popular press to bring topics of sexuality and
infertility before the public. During the late 1800's, discussion regarding men's
responsibility for inflicting sterility on their wives as a result of acquiring gonorrhea from
prostitutes took place amongst physicians. By the early 1900's, physicians publicly
conveyed their concern that infertility might be caused by venereal disease. Using the
popular press "an influential group of physicians and anti-vice reformers attempted to
convince the public that gonorrhea was perhaps the most important cause of both
absolute and "one-child" sterility in the United States " (p. 116). Physicians and the
public press helped move public the very private concern regarding fertility to help stop
the rise in infertility encountered. These authors also note that other changes taking place
in the 1900’s, such as an increased openness to birth control, divorce, and sexual
intimacy, also generated a willingness among men and women to speak publicly about

their personal struggles with not being able to have children of their own.

'44

Voices Are Missing

My research has revealed that a major weakness in historical accounts of
infertility is that they do not incorporate more voices of women unable to seek medical
treatment for their infertility because they could not afford it. A forum should exist
which provides active and informed participation by members of the infertile community
and the population in general to resolve difficult issues surrounding access to health care.
Marsh, and Ronner (1996) mention that some poor infertile women did indeed receive
free care from certain physician groups in the past (p. 158). But they did not analyze this
issue in depth. Women decide not to seek treatment for their infertility because they have
a hard time coping with the overwhelming emotional and physical component of
infertility treatments. However, as importantly, there are many women and men who are
unable and unwilling to seek medical treatment for their infertility because they cannot
afford to do so. The population of uninsured poor infertile has been and continues to be
marginalized. This “unworthy” class of individuals has been relegated to a negative
position within society because they are often seen as being responsible for poverty,
crime, and a host of other social problems (May, 1995, p. 125).

If the number of medically uninsured continues to increase during the 215' century
in the United States, the definition or perception of “parental worthiness” might change.
The privileged/insured might themselves become medically uninsured with respect to
infertility. An apparent trend in the United States is that more employers are assessing

the broad categories of needs for their employees and the costs associated with providing

45

 

forthose needs. Employers are increasingly deciding not to offer health insurance for
their employees.

Infertility has been and continues to be an intensely private matter for women. It
often takes an extraordinary charge, claim or practice to motivate an infertile woman to
take her concerns public. For example, early in the 20th century women with infertility
problems began to speak out as a defense against being labeled as participants in what
had come to be called "race suicide" (Marsh and Ronner, 1996, p. 113). The
involuntarily childless were implicated unjustly by some in their communities as
participants in the drastic decline in the birthrate among native-bom white Protestants of
English decent. The second half of the twentieth century witnessed a public outcry
against non-consensual sterilizations. With the emergence of various civil rights
movements in the United States numerous states began repealing legislation that
permitted eugenic sterilization (Encyclopedia of BioEthics, Vol. 2, p. 844). During the
late 1900's, a new force continued to move the intensely personal experience of the
infertile from the private domain into a very public domain. Those who felt their
infertility treatments should be fully or at least partially covered under their insurance

plans took their concerns to the United States courts.

Incorporating Voices of the Infertile and Health Care Policy Decision Making

When considering the availability of quality health care and health insurance
coverage for the infertile, for example the availability of treatments necessary to diagnose
why someone cannot get pregnant, the personal narratives of the uninsured infertile

should be included. People of color and the poor have the highest rates of childlessness

46

in the United States often due to poverty and poor health care. Yet, they are often among
the least insured in the United States. According to May (1995), poor and working-class
women experience a higher rate of infertility than highly educated and affluent women
(p. 246). Berg (1995) claims that when addressing risk factors for infertility,
epidemiologists have identified three risk factors: (1) being black; (2) being a woman
with a lower educational level; and (3) being a woman of advanced age (p. 92). A
prevailing thought is that the higher rates of sexually transmitted diseases in the black
population place them at great risk to experience reduced fecundity (p. 92). May (1995)
states that, the rates of childlessness among whites, blacks and Hispanics have fluctuated
over time. However, educated, affluent women of all racial backgrounds have similar
rates ofinfertility (p. 12).

It is unreasonable to rely on anti-disability discrimination laws to increase active
and informed participation in discussion regarding access to health care for the infertile.
Americans have come to ask more and more of their government regarding access to
health care. However, when we rely on interest groups to make democracy work the
possibility exists that we as a society will deepen the divisions separating different
elements of the population (Bok, 2001, p. B9). Perhaps, by encouraging improved moral
conversation that takes into account the voices and values of all those affected by
infertility, the “community” of health care providers will begin to improve care for all
those affected by infertility.

An increased willingness to discuss infertility issues publicly rather than privately
is a step in the right direction. The infertile in the 21St century appear to be more open to

discussing issues surrounding infertility. We appear to be taking our concerns more

47

publicly instead of agonizing privately. Women in particular appear to be more willing
to question the benefits and risks of old and new medical treatment options available for
infertility. They are also very vocal when it comes to questions regarding health
insurance coverage for infertility. I recently had an opportunity to join an Internet “chat”
room dedicated to infertility issues. Two things were readily apparent. First, the women
(I am assuming the participants were women because of their code names) were
extremely candid about why they felt the way they did about the lack of insurance
coverage for infertility. Some of them expressed anger, outrage and frustration because
they could not afford to pursue certain treatment options due too the fact that their
employer did not cover certain aspects of infertility treatment (such as in-vitro
fertilization). To pay for infertility treatments, working class couples often exhaust their
savings, take out a second mortgage on their homes and/or call on family members to
help them financially. The cost of a series of three monthly attempts at artificial
insemination can average $950. The average cost of a single monthly cycle of Clomid is
$2,000. Clomid is a hormone used to stimulate egg production. Gamete intrafallopian
transfer can cost $12,000. If the couple decides to cyropreserve some of the embryos
fertilized in the laboratory for possible future implantation, the co$ts rise. (Gabriel, 1996)
The average cost of an in-vitro fertilization cycle is $7,800, according to the American
Society for Reproductive Medicine. (Gabriel, 1996) In today's market, one round of IVF
can easily cost more than $10,000. Second, it was evident that these “chat” room
participants were very generous in their offers to help each other find out appropriate
answers to their questions. Participants offered phone numbers, addresses, and personal

contacts to fellow participants. However, none of the women had heard about the court

48

 

challenges regarding infertility as a disability (1 presented the issue). This was a new
concept to them. In response one of the infertile participants emphatically stated: “I am
not disabled!!!”

However, the ADA forum and the Internet forum do not tackle the difficult moral
issue that the infertile poor and uninsured find their pursuit of happiness unjustly
compromised. These men and women cannot afford to pursue their desire to have
children of their own without some form of financial assistance. The ADA has played an
invaluable role in ensuring that the interests of the employed traditionally disabled are
represented in the policy-making process. The Internet forum has provided a much-
needed public outlet for the infertile to exchange information (hopefully accurate
information) and share emotions. Neither forum considers the long— term implications or
consequences of how the results of the infertile being labeled disabled will impact future
health care policy.

Even though I have suggested that the infertile should not embrace the label
disabled as a means to adjudicate entitlements to medical benefits for infertility, it is
important that these individuals have taken their cause public. It often takes a sense of
injustice along with feelings of anger, outrage and at times revulsion that accompanies a
person's sense of injustice to overcome shame and motivate particular individuals to take
their very private concerns public. Unfortunately, my research revealed that the relative
silence of the infertile persons perspective regarding all aspects of their reproductive
lives, including but not limited to their concerns regarding the economic, emotional,
physical, and psychological aspects of infertility, is an issue authors and politicians are

just beginning to address.

49

CONCLUSION

I have demonstrated that the infertile in America should not rely on the
Americans with Disabilities Act of 1990 to solve problems in access to health insurance
coverage for their infertility. The ADA has justly helped women to maintain
employment while they pursue medical treatments for their infertility. The ADA route
has also helped to move a very private issue public. This is a good thing for all of us. As
our country continues to address difficult issues regarding the provision of health care,
those courageous enough to take their historically private condition- infertility - public
have helped break down the wall of silence for other infertile. The values, wants, needs,
and desires, of the infertile need to be considered by a larger audience as future health
care policy is established. However, it should not be assumed that all infertile women
and men believe that being labeled disabled as a means to improve access to resources for
their infertility is the right path. The ADA forum does not provide a means to address
how to help the poor/uninsured infertile receive medical treatments for their infertility.
Also, those infertile that have appropriated the label disabled, as a means to increase
access to medical resources for their infertility, fail to respect those who are disabled in
the traditional senses.

It might be inappropriate to some people to argue that the infertile poor/uninsured
individual ought to receive some form of financial assistance to help them conceive a
child. It could be argued that if you are poor/uninsured in this country you would not be
able to financially support yourself- let alone a child. Nevertheless, in the past, the

infertile of limited means received financial help and political support from private

50

 

physicians and their state governments. In the early 1900's indigent couples could
receive medical treatment for their infertility at free clinics. "The 1930‘s witnessed the
growth of a number of free or low-cost infertility clinics, some of which had been started
a decade or so previously" (Marsh and Ronner, 1996, p. 158). But, in the early 21"
century, when this country has more than 44.3 million medically uninsured men, women
and children, it might not be inappropriate to advocate that the poor/uninsured infertile
receive some form of financial assistance for infertility treatments (Fleck , 2000, p. 3B).
It is unfair to judge the uninsured infertile persons worthiness to have children when the
rate of medically uninsured is already high and all indications suggest that the rate of the
medically uninsured in the United States continues to increase on a daily basis. In fact,
the percentage of medically uninsured may now be greater than that of the medically
insured. To not address how and why so many people go without needed health care
because they cannot afford to pay for it, is immoral.

Finally, those infertile that have appropriated the label disabled, as a means to
increase access to medical resources for their infertility, have failed to respect those who
are disabled in the traditional senses. The primary goal of those who claim a
“reproductive disability” under the ADA is to “eliminate” or overcome their infertility,
not to begin to understand how'disability is integral to a person’s character and life
experiences. Immanuel Kant believed that human beings occupy a special place in
creation. “Human beings have an intrinsic worth, i.e., dignity, which makes them
valuable above all price” (Rachels, 1986, p. 114). The traditionally disabled have fought
for the same civil rights and opportunities that all citizens have. They have also struggled

to restore dignity and respect to their lives. The ADA has helped them to achieve these

51

 

most basic and valuable goals. “I have come to know the daily frustrations, and needs of
those who live with disabilities. I have had to learn to talk again, to read again, and to
walk again” (James Brady; Congressional Record-Senate, July 13, 1990, p. 17368). For
the traditionally disabled, disability is a fundamental part of their lives, as is striving for
the self-respect and self-esteem all human beings deserve. Tremendous heartache is
associated with not being able to have of your own. The feelings of despair can be
overwhelming for the infertile. However, most infertile men and women who claim a
“reproductive disability” under the ADA have never experienced the heartache associated
with being disabled in the traditional sense. The Americans with Disabilities Act of 1990
should be allowed to do what it was intended to do: help the truly disabled to be treated
fairly, to be accepted, and to contribute fully to our country. There must be a better
avenue for the infertile to challenge the perceived injustices they feel when they are
denied health insurance coverage for their condition.

The infertile that have called on anti-disability discrimination laws to resolve
insurance disputes and to maintain their employment would disagree with my argument.
Diane Aronson, executive director of Resolve, a national advocacy program for the
infertile, which is located in Somerville, MA, applauded the United States Supreme
Court's decision. Aronson stated, "We believe this ruling will help to strengthen the
claims of discrimination when those with infertility are not allowed workplace
accommodations to undergo treatments or when an employer does not provide infertility
insurance coverage. The Supreme Court’s decision will make it more difficult to unfairly
discriminate against those who experience infertility” (MSNBC, July 24, 1999).

Advocates for the infertile feel that the Supreme Court has provided the employed and

52

 

medically insured infertile community a powerful new weapon to use against their
employers and insurance companies (Resolve's "FAST FACTS" newsletter, faxed on
January 6, 1999). Advocates for the infertile feel that infertility is a medical aliment that
warrants some form of health insurance coverage. Most insurance companies will cover
medical treatments that help individuals determine the reason(s) behind their infertility.
But, many health insurance companies limit access to resources that might help the
infertile conceive. It is expected that the recent court decisions will increase access to
health insurance for infertility services. Advocates feel that since some employer based
or government subsidized health insurance covers medical treatment of many other
disabilities, infertility treatments should be a covered health insurance benefit. Yet, lost
in the equation is that anti-disability discrimination laws only apply to those who are
employed and insured by their employer.

To comment on whether some infertile truly believe they are disabled in the
traditional sense, would be speculation. However, statements made contradicting such a
belief are not uncommon. Statements such as the following have been made: “Call me
disabled if it will improve my opportunity to receive health insurance coverage for
infertility” (infertile friend). Or, “I may appear perfectly normal—I can do mostly
everything—run, jump, skip—but physically we are — we are disabled, we’re diseased in
a way because we can’t procreate naturally” (National Public Radio, 1998).
Nevertheless, the courts have validated the notion that reproduction or procreation could
be considered a “major life activity” under the ADA because “reproduction and the
sexual dynamics surrounding it are central to the life process itself ’ (Justice Kennedy;

118B S. Supp.2205). The ADA clearly has weakness in its original vague definition of

53

 

 

U“

disability and as with any policy it will evolve and change. But, any future changes that
occur in ADA policy should improve upon what the traditionally disabled fought for:
inclusion, understanding, respect and dignity. The “reproductively disabled” have failed
to demonstrate with their actions and words that they understand how important these
issues are for those who have struggled to overcome the stigma of disability.

The means society uses to improve health insurance coverage for infertility ought
to be respectful to the traditionally disabled community and based on a universal premise
that applies to all infertile, not just the privileged “employed insured infertile”. It is not
unreasonable to ask everyone to think beyond his or her aliments and think about how
medical coverage for all of the uninsured, including the uninsured infertile population can
be improved. The real problem to be addressed is how to provide coverage to the 40-50
million completely uninsured people in the United States and the other 50 million .

' underinsured people (George Innis, National Public Radio, 1998). Once addressed,
health care access would be improved for everyone- including the infertile and disabled
communities. This will provide a more just resolution. One class of individuals will not
be used to advance the causes of another class.

As a society, we need to focus on the more productive initiatives taking place
regarding infertility. Researchers are addressing the effectiveness of particular treatments
and the costs associated with treatments. They are looking at cost-effective, evidence-
based infertility care (Gleicher, 2000 and Salim, 2000). Economic evaluation of
infertility services is important especially as the demand for services increases. We also
need to first prevent what infertility we can. Not only can there be economic benefits in

preventing infertility, but more women and men would be able to experience one of life’s

54

 

__..--¢r--_,

 

 

most joyful pursuits, having their own biological child with as little medical intervention

as is possible.

 

55

 

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Cynicism with civic involvement.” The Chronicle Review, 2, p. B9.

Brady, Robert L. (1996, July). “Court says infertility is an impairment,” HR Focus 73, 7,
p. 20.

 

Castellano, Lucinda A. and Chapman, Randy. (1993). The Prentice Hall ADA
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Clark, Denise M. (2000, September). “Exclusion of infertility in the aftermath of Bragdon
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Craige, William A. and Hulbert, James R. (Eds). (1938). A dictionary of American
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Craige, William A. and Hulbert, James R. (Eds). (1942). A dictionary of American
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