Maya Miro Johnson
Hypermobile Spectrum Disorder/hEDS; Traumatic Brain Injury; comorbidities including Pelvic Venous Disorder, Vulvodynia, Biliary Hyperkinesia, Superior Mesenteric Artery Syndrome, Chronic UTI, PTSD, dysautonomia
Much cultural consternation has occurred over the concept of hierarchy within disability, particularly because of its diversity of individual experience despite the overall shared perspective of being, well, disabled… by something pertaining to the uniqueness and fragility of the individual body. Dynamic
and/or invisible disabilities carry with them the potential to obtain privilege from the capacity to conceal, to appear or act “normal” – by whatever standards a particular society sets. But this falsity of appearance creates a double-edged sword in which invisible disabilities, due to their palpable absence of obvious and replicable “otherness” or “deformity”, are often pushed out of disabled communities without having access to abled ones, or face the psychological persecution of being actively and violently disbelieved. As a bisexual, Jewish, invisibly physically-disabled cis-woman, I have lived my entire adolescence and adulthood in the cracks between which people like me fall.
Many people look at me and see a young professional musician with an elite education, consistent work output, and qualities of talent, ambition, and even a touch of personal style. In my many intersectional privileges and disadvantages, I am sure there are those who are envious of this persona they – and sometimes I – project.
But what they don’t see is the 18 surgical procedures I’ve had in 3 years, the feeding tube equipment bills I continue to pay years later, the hours spent researching on PubMed, the fruitless ER visits, the social schedule built around doctor appointments and tests and surgeries, the drawn-out insurance battles, the out-of-state specialist appointments, the ripping stabilization tape and braces off my joints every day, the NSAIDs, the monthly battle for accurate refill scripts at the pharmacy, the PTSD from a long hospitalization, the IV antibiotics, the months of not being able to eat, the loss of self and agency and treasured activities, the intensive physical therapy routines, the sexual trauma, the years of not understanding why my body just seemed not to work with no viable explanation – not to mention the intense pain and fatigue itself.
