As a disability sibling and scholar, my professional and personal lives blur. They unfold within a tension and, when I’m in the thick of interviews with family members or am sifting through my existing data, I necessarily engage with the words and experiences more fully – or simply differently – than if I had the luxury of empathetic detachment. The stories cut just too close to the quick. The modern term of art would be trigger warning: my data, my project, is one continuous trigger warning. But that’s so dramatic. Lives happen, experiences unfold, and we deal with the affective and practical worlds in which we land. So I sweat out the memories in my long runs or watching an episode of “Parks and Recreation” on Netflix at the end of a day of recording and coding data. I knead the old negativity away as I prepare pizza dough from scratch, marveling as it doubles in size, or baking chocolate chip cookies. I do what I can to detoxify the old stresses, doubts, and what-if’s of my own family’s story as I listen to others share theirs. It’s a balancing act, but it’s the one I chose.
My research examines family experiences with rare and undiagnosed disabilities. This is an incredibly important and largely unrecognized population numbering well into the millions, and my work is part of a slowly stirring effort to raise awareness about this world. On both a personal and intellectual level, I am fascinated by the possibilities for diagnostic identity – for reframing a lack of diagnosis not as an individual anomaly (often with heavy moral undertones), but rather as an expansive reality that is neither a negation of modern biomedicine’s promises nor an inherently isolating and ambiguous embodied reality. Continue reading