In this autoethnographic research, I explore the complex interplay of voice between caregivers and adults with intellectual and developmental disabilities (IDD). Adults with IDD often collaborate with caregivers, usually family members, to meet their daily needs, especially when they have complex communication and support needs. Caregivers are frequently asked to serve as vocal proxies for these individuals, leading to an entanglement of voice that impacts various life domains for both parties. This dynamic necessitates an understanding of the unique needs of family caregivers, including navigating service systems and maintaining wellbeing to provide sustainable support. Yet, their voices and needs are often overlooked. My research, therefore, seeks to understand their lived experiences. The central question I investigate is: What can my experience as a family caregiver uncover about the entanglement of voice among family caregivers of adults with IDD who have complex communication and support needs? Using an inductive approach to reflexive thematic analysis and writing narratively around my data, I generated three main findings: Entangled Voices Across a Variegated Landscape of Care, Monopolizing Knowledge and Conferral of Who is Expert, and Caregiver Currency: How Much do You Have to Spend? These findings contribute to a more nuanced understanding of the caregiving experience. I conclude by discussing implications for research, education, and practice.
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