Learning to Embrace a Disabled Identity: Reclamation and Negotiation
By Nicole Schroeder
It’s been a while since I started identifying with the “fellowship of the invalid” – an amazing term, in my opinion, coined by the anthropologist and disabled sociologist Harriet Martineau. Eight years ago, when I was a sophomore in college, I was diagnosed with Ehlers Danlos Syndrome Hypermobile Type III. This connective tissue disorder is characterized by joint hypermobility, tissue fragility, and organ damage, making it a nightmare to secure holistic care that addresses the totality of its symptoms.
I was the first in my family to be told that I had Ehlers Danlos Syndrome. A flare up of symptoms at college promoted a meeting with a geneticist, who diagnosed both my mother and I with the syndrome at the same time. A few months later, my younger brother was also diagnosed as his symptoms began to manifest. This is unfortunately incredibly common for people with EDS. The syndrome manifests differently in each individual, and is so rarely taught in medical programs, that doctors often miss the connection between symptoms. I had struggled with joint issues and fainting problems throughout my teens. Yet the symptoms were not tied together until I saw a geneticist in Boston. It is an odd thing to be told that you're disabled, your mom is disabled, and your brother is disabled, in the span of a month. It's even more odd to realize that feeling sick all the time is not normal.
Armed with this new diagnosis, I headed back to school in late January. I had to tell my professors that no, unfortunately I did not “get better” over the holiday. In fact, I would never “get better.” It was an awkward process as I both internalized this identity and embodied it. It was infinitely complex to explain that while no, I didn't suddenly get sick, I did suddenly gain the authority to ask for these changes.
During the previous term, I fainted in front of a professor, dislocated my hip walking to class, and went an entire weekend with my shoulder out of place because student health gave me a sling instead of a referral to an orthopedist. My new diagnosis changed how I viewed my body and my general health. I couldn't just “deal with it” the way I always had.
It was, needless to say, a panicked holiday break. I cried nearly every night wondering what I was going to do. Wondering who I was in the wake of this. Dreams of backpacking, going on road trips, and volunteering with the Peace Corps went out the door. I had nightmares of “what ifs” – what if I can’t finish school, what if I can’t work a full-time job, what if I will always be in this much pain? What if I lose the ability to walk, what if I have to move back home, what if I had to be hospitalized? Who was I now?
When I returned to school in January, I struggled to embody my new identity. I suddenly had to advocate for myself and explain my illness to others just as I was figuring it out. I was combatting my own internalized ableism while standing in the face of a very ableist world. I wasn't scared to call myself disabled, but I felt awkward doing so. I posted on Facebook, tried to be transparent about what I was dealing with, tried to articulate what this new identity would mean for me. I received a slew of comments that fell along the lines of “oh my goodness I'm so sorry,” and, “I had no idea you were dealing with this.” The apologies made me feel itchy in my own skin. I was scared about my future, but confident that I would learn, cope, and thrive in the end. Yet the general sentiment was that my life had ended, or at least had been put on hold.
Every time I returned to my teeny tiny hometown for school breaks, I dreaded leaving the house. Going to the only local grocery store was a struggle. I ran into far too many people who looked at me with pitying smiles, soft eyes, and words of healing. They told me that I was in their prayers, which I reluctantly accepted despite my own lack of religious faith. “They're trying their best – this is what they can offer you,” I told myself. It was like my disability changed everything that I had been in their eyes. I was suddenly someone else – something else – to them. I wasn't just the smart girl who got into a phenomenal college a few states away. I was now the embodiment of unfairness. How could this happen to someone like me? I was “too young”, “too pretty”, “too smart” to be disabled.
Yet nothing had happened to me. I was granted a diagnosis for symptoms I had been struggling with, behind the scenes, for my whole life. I felt empowered in the medical world that my complaints were finally valid. I felt that I could finally demand answers, or at least criticize the medical field for its inability to create palliative care. I could look back at every doctor who wrote off my symptoms as “growing pains” or as “stress-related” and I could be sure that I knew my body, that what I felt was real and measurable.
Over the past six years, unfortunately, the public sentiment surrounding my disability hasn't changed that much. I graduated magna cum laude, Phi Beta Kappa, with a double major in history and classical studies. I studied abroad in London where I wrote an honors thesis. I was accepted to a top graduate program for history, wrote a master’s thesis, and worked as both a teaching assistant and research assistant. I wrote pedagogical material on accommodations and accessibility, gave papers at multiple conferences, and received over three national fellowships to fund my work. And yet the pitying looks remain when I detail to people that I am disabled. When friends or family claim, “I'm so proud of you,” I wonder to myself: “Is it because I did all this despite being disabled? Or because I did all this at all?”
I realize that I am a “teaching moment” for many people. I realize that they don't know how to act or respond to my portrayal of disability. When I teach undergraduates, I tell them in the very first class that I am disabled, that I have accommodations, and that I might not always be able to attend class. I can see their confused expressions as they wonder, “Why does a sick person work here? What happens when they can't teach me? Will I fall behind because of them?” I assure them that no, I’m fully capable of educating them and balancing my own needs. Their hesitancy and open derision for change force me to hold my tongue. I tell them that there’s no shame in securing accommodations and I walk them through the process. I know that those who need the accommodations, much like myself, struggle with guilt when asking for help. I want to tell them there’s no shame in it, but how can I, when facing their ableist assumptions that I am unfit to teach?
Oftentimes my students thank me at the end of the course for giving this of myself. I've held personal Q & A sessions on coming out as disabled and working in the world of academia. I’m honest about it. Anti-discrimination clauses tacked onto job applications ensure that we legally have a seat at the table. But what happens when your disability prevents you from being as productive as someone else in the field? There is a veiled whisper, “don’t risk it. Don’t disclose if it’ll cost you a job.” A place at the table may exist, but it lacks a place setting. If you’re disabled you have to first prove that you are just as worthy as others, if not more so, before the silverware is reluctantly set before you.
I want to tell future students that there is a place open at the table. I want to assure them they’re valued, for all of their brilliance, regardless of their disabilities. I want to honor the insurmountable barriers they’ve faced just getting to college. I don’t want to mourn for all of the challenges I know they’ll face, that they do face, every single day. I want my story to be the rare one. I want students to look up and see disabled people, proudly embodying disability, in every space. We’re already here; I can’t wait for the day when we can be obvious about it.
Author Bio: Nicole Schroeder is a PhD Candidate at the University of Virginia in the Corcoran Department of History. Her dissertation traces the rise of disability in early America, considering the intersections of medicine, welfare, and disabled experiences in Philadelphia from 1730-1840. You can reach her on Twitter @Nicole_Lee_Sch