I’m leaning against the door frame of the drama room, talking to a teacher that’s known me for four years, one that wrote my college recommendations and always ensured this was a space where I felt welcome. I’m discussing upcoming auditions and wanting to try out but being scared my disability will hold me back. He laughs at me, and it’s a struggle to keep my shock in check.
“You’re not disabled. You’re just clumsy!”
He brushes off my comments about my Ehlers Danlos Syndrome, waves a hand at my mention of chronic pain. “But you’re so strong—I’ve got kids who can’t do half the things you do. Come on, you know better than this.”
It stings, and I leave it. There’s no point in arguing, trying to bring up my medical history, and explain to him those 27 injuries and 6 surgeries and countless missed days he’s seen me go through.
Later, when discussing my one-act play with the other drama teacher, she’s dubious over my idea of submitting it to a disabled playwriting festival. In her eyes, I don’t meet the qualifications. I’m not “classically disabled”—so, therefore, I’m fine.
I don’t have the time to begin to explain to her how harmful that thinking is; how those stereotypes perpetuate the lack of disability awareness and functionality. I am “high-functioning” in her eyes, making me okay.
Plot twist: I’m not.
My drama teachers love me dearly. They don’t make these comments out of malice, but out of ignorance. However, it should not rest upon my shoulders—which are so prone to dislocation—to educate each and every person who sees me as abled. I do what I can, but my disability makes my life justification and defense over the treatment I require. My disability creates long conversations in which I have to be able to pull out websites and medical notes and facts to verify my diagnosis.
My disability means that I look abled—until I don’t. Until chronic pain has put me in a wheelchair because my hips won’t work properly. Until I’ve broken another ankle and I’m “crippled again.” Until I show proof that I am disabled, I am not.
At thirteen, I was diagnosed with hypermobility Ehlers Danlos Syndrome. Years of chronic pain and baffled doctors had finally led to this life-changing moment, and my mom and I cried together in the car after the appointment. We finally had answers. Other diagnoses began to arise: postural orthostatic tachycardia syndrome (POTS), scoliosis, a chronic migraine disorder, TMJ, a Chiari I malformation, narcolepsy and cataplexy, a history of torn ligaments and cysts, osteoporosis, specific antibody deficiencies, depression and anxiety and post-traumatic stress disorder, and still—I was “just unwell”. Family and friends and teachers and strangers and doctors all told me—I was just clumsy. My whole life, everything I had gone through—it was me being just accident-prone.
People require my entire medical history in order to justify my existence and allow themselves comfort in their judgment of whether they feel I am “disabled.” I am made to feel like I owe it to them, because how else are they to understand my plight? Abled people use the word just as a modifier to instantly delegitimize disabled struggles—by changing “she’s clumsy” into “she’s just clumsy,” one word reframes the mindset and connotation of a sentence. “She’s clumsy” allows for disability to play a role in the effects of injury, but the instant “just” is inserted into the sentence, it negates and dismisses the experience a disabled person goes through. The word “just” is used to explain disability with everything other than disability.
My hidden disability means that a majority of the time, I look abled. I am walking, functional, and the only signs of my chronic condition are the surgery scars marring my arms. I am blessed, in many ways, to be able to function the way I do. But my hidden disability has alienated me from disabled groups, allowed strangers to feel they have the right to comment on my “status” as disabled, and created problems getting the medical treatment I need because I don’t present classically (even within my disability). It has led to judgment over my position as an advocate for disabled rights within my school community, claims that I am “faking” out of a necessity for attention, and frustration with friends every time I have to explain to them—once more—I am disabled.
My hidden disability gives me relief from certain prejudices and stigmatization that others in the disabled community experience. Slurs are not thrown at me for my outward appearance. I do not have to give up shopping at certain stores because they are not ADA compliant. I am not visibly presenting all the time, and I will never say that I don’t find relief in that.
But my hidden disability bites when I am in a wheelchair, and friends suddenly understand just how well I know exactly which stores are ADA compliant. My life has become justification and defense before I am allowed help and support. When I do visibly present, it’s so much easier to classify me as “injured” instead of “suffering from a flare-up of a chronic condition caused by disability.” Hidden disabilities create internal struggle—am I disabled enough to say I belong to this community?
The simple truth of hidden disabilities: I must be able to defend my diagnosis and disability before society allows me to have one.
