My Disabled Journey
I started experiencing the world as a disabled child around the age of 4, when I experienced my first knee subluxation. I became afraid of running, as that was when subluxations happened most often, and I solidified my identity as disabled in fourth grade, when a playground injury forever altered the way I moved. I didn’t claim the term disabled until I was into my twenties, however, due to internalized ableism causing me to minimize my experiences. When I was a teen, I went on a trip and picked up a virus that my immune system had a drastic response to, causing temporary partial paralysis in both lower extremities. I regained strength in my legs over the course of several months, but it was a crash course in using mobility aids to function.
The terms I used to describe my experience at this time were “chronically ill and immunocompromised”. I remember experiencing pushback from a wheelchair using peer the first time I used the word “disability” to describe my bodyminds experience, because once I stopped using mobility aids most of the time (only pulling them out on my hardest days), there was “nothing visibly wrong” with me. I remember being troubled by this experience, but not wanting to speak over someone who was possibly further marginalized than myself, I recoiled and ID’ed as someone living with an invisible (undiagnosed) illness. I went to doctor after doctor seeking help for my chronic pain, fatigue, and extensive history of dislocations and subluxations. I received a long list of diagnoses including but not limited to mitral valve prolapse (MVP), fibromyalgia, HLA B27 positive leading to anklyosing spondylitis, bipolar type two, and borderline personality disorder. Some of these diagnoses stuck, and some did not.
Today, my doctor calls my collection of labels hypermobile Ehlers Danlos syndrome (hEDS). I also identify as Mad, with a collection of mental health experiences that are not neatly categorizable at this point. I am a survivor of complex childhood trauma and also understand myself to be neurodivergent.
