I hate hospitals. The fluorescent lighting; the sound of blood pressure heart rate, pulse-Ox, IV infusion monitors clambering like an under-funded elementary school orchestra; the hallways that stretch nauseatingly into each other. I hate hospitals the way many hate high school or even college: Experiences that cling to memory with disgust, with morbid fondness, with the nostalgia that comes from a place where you’ve spent the better part of your adolescence and early adulthood.
Many people see the hospital as a place where you get better. For me, though, it’s where I’ve been poisoned, irradiated, cut up, and reassembled with skin grafts, a transplanted fibula, and nylon stitches running from my ankle all the way up to my waist. Translation: I went through cancer treatment in my teens which has left me chronically ill throughout my early twenties. And despite the gratitude for my life that comes from such an early acquaintance with mortality, I have found, more than anything, the loneliness and disconnect between being both young and sick to be the most disabling.
When I was finally allowed to attend high school again, I, like many others new to the disability community, viewed myself through “the medical model” of disability. Here, our disabilities are treated as tragedies where the “burdens of being disabled” fall solely on us. In the end, the world gives us one of two options: life as a second class citizen or a hero who “overcomes” their body by virtue of mythical willpower, tenacity, bravery—and privilege. So, I refused all accommodations, my face flushing hot if anyone dared to offer me a hand or a seat or, god forbid, a wheelchair. “No, thank you,” “I’m ok,” “I’m fine.” “I’m fine.” “I’m fine.” Some may call this behavior ‘inspirational.’ I call it misguided, self-destructive, and a one way ticket to both the ER and the psych ward.
Nevertheless, through all of these ‘ordeals’ my life remained, in many aspects, painfully normal. I remember the day before I went into surgery last spring, I got my period. I informed the nurses during the final consultation and probably a few more times as I was being wheeled into the operating room high on that special pre-surgery cocktail that the anesthesiologist fixes up. 16 hours later, I woke up with a newly constructed leg, five different ten gauge needles stuck into my arms, and a few strips of sterilized cotton stuffed up and around my crotch. It took three days to finally get the attention of a female ICU nurse to help me. They had three different ways of monitoring my blood pressure and heart rate, but not a single decent way to deal with a woman on her period.
People with disabilities under the age of 40 are not something high schools or hospitals are prepared for. We used to simply get sick and die. But now that modern medicine manages to keep more of us alive, they send us back into the world—some of us with fewer limbs than before—all of us filled with the desire to belong. However, we remain in a thankless limbo between two extremes where many come of age in a world that tells us in a million different ways that to have a disability, physical or mental, is to be weak, unwanted, and unworthy. I am reminded of this by every stolen stare, the flinch at the sight of a scar, the pitiful tenor of discussions related to diagnosis. Perhaps people are afraid of catching whatever affliction they imagine us to have. Or perhaps they’d rather not be reminded that they too are human and human bodies break, they age, and are fundamentally temporary.
And yet, the disability community is resilient—a quality forged, in many ways, by our experiences as disabled people. They are what break us and shape us; like broken glass melted then molded into something different and wholly beautiful. In the same way, we craft our own perspective, rejecting the medical model to reframe disability as a socio-cultural identity where members have shared history, customs, and experience while remaining distinctive in the challenges faced at their own crossroads between intersectional identities. We do not experience oppression due to individual shortcomings, but because we live in a society that denies us the opportunity to even participate.
Many may read this and feel confused. Afterall, we have the the American’s with Disabilities Act (ADA) which ensures equal protection and opportunity for the disability community under the law. Though the ADA is a monumental achievement, the existence of law, as the history of racial injustice in the U.S. can attest, is a far cry from actualizing the change necessary for a more equitable society. The disability community continues to face immense obstacles including a lack of ADA enforcement and a pervasive attachment to the medical model. So, kept out of sight, out of mind through inaccessible infrastructure and oppressive ideologies, disabled identities have disappeared from the collective consciousness.
To be forgotten in this way is its own form of violence against which I—no, we—fight to be recognized as whole human beings with emotions and desires, worthy of dignity and respect. Ultimately, I owe my sense of self worth and my desire to live not to modern medicine or willpower or stubborn stoicism, but to becoming a part of a community: the disability community, who taught me that you can take pride in the smallest of victories, find humor in the midst of immense pain and value not only what you can do but who you have become.