I am currently conducting extended qualitative research for my dissertation in anthropology and I am looking for parents, siblings, family members, caregivers, allies, and professionals who would be willing to participate in a short interview about their experiences with disability and diagnostic journeys. My work examines changing understandings of multiple disabilities, and I am especially interested in rare and undiagnosed syndromes. What does it mean to be part of a small or unrecognized disability population? How can it be that up to 40% of all children with disabilities lack a clear diagnosis, yet there is such little knowledge of their experiences or those of their families? What might society learn from your story and your family’s diagnostic odyssey, or from your insights or struggles as a professional serving this group?
My research and goals are intimately shaped by my experiences as a sibling, since my younger sister has CHARGE syndrome. CHARGE occurs in approximately one in every 8,000-10,000 births and is now a leading cause of deafblindness, yet very little was known about the diagnosis when my sister was young. She lacked a diagnosis for much of her childhood and seemed to fit in nowhere. I now know that stories like ours are far from unique, and I am deeply committed to using my work to gain a better understanding of and also spread awareness about such complex encounters with disability and diagnosis.
My research is grant-funded and I have received IRB approval from my home institution, The University of Texas at Austin. Unless specifically requested by participants, I will use pseudonyms for all interviewees in any notes, publications, or presentations based on this research to ensure anonymity.
If you have any questions or would be interested in speaking with me, please contact me at emlewis [at] utexas [dot] edu. Your participation is greatly appreciated!