What does it mean to be undiagnosed? I ask this both in regard to the impact of diagnostic ambiguity and also the broader social and biomedical significance of a diagnostic void. More specifically, I’m interested in what it means to give meaning to the lack of a diagnosis. To not having a name, not having an access card to services or therapies, to the affective and logistical resources that ground people with disabilities and their families in broader worlds, worlds that reach beyond the parameters of their autobiographies, stretching outside the walls of their homes and the borders of memories.
My sister, Katie, was born in 1984. She was slightly premature – but not alarmingly so – and had a seemingly mismatched collection of impairments and health conditions. After her birth, doctors told my parents that she would not survive. I vividly recall going to preschool as all of this unfolded and being congratulated for being a big sister. “What’s your baby sister’s name?” asked my teachers and my classmates’ parents. “She doesn’t have one yet,” I replied. “The doctors aren’t sure if she will live, so my parents haven’t named her yet.” I was four years old and did not realize the singular strangeness of this statement. Continue reading