By Max Huibregtse
I didn’t realize I was disabled until about six years after my diagnosis. I knew, of course, that I was ill — that I had a chronic condition, that I had had more doctor’s appointments in the last half decade than most of my peers had had in their entire 18 years. Unlike many disabled young adults, I had a diagnosis — type 1 diabetes — and an explanation for what was happening to my body. I had medications that made me feel better and medical equipment that allowed me to live a more or less ‘normal’ life, to walk into a college classroom where no one except my roommate knew I was diabetic.
On one such normal day, I participated in an activity designed by my classmates. It didn’t strike me as unusual: Signs were posted around the room denoting different markers of identity — race, gender, sexual orientation, etc. Someone would read out a statement, and we would all migrate to the sign that we felt best described that statement for us. The last statement was something like, “This is the aspect of my identity I think about all the time.” I sat alone in the middle of the room; I didn’t have an answer. It wasn’t until we were leaving the classroom that I realized that disability wasn’t even on the wall.
The CDC defines a disability as a physical or mental condition that limits a person’s ability to participate in everyday life in a “normal” way. As a diabetic, I lack many of the visual signifiers of disability that my classmates would have been expecting. I don’t use a walker or a wheelchair; I don’t wear dark glasses and navigate the world with a cane though, of course, my visually impaired friends don’t do that either). In the legal world of black and white, diabetes is definitionally a disability, as spelled out in the protections of the 1990 Americans with Disabilities Act. I cannot be fired if I have to, say, leave a meeting to manage a falling blood sugar, and if I eventually develop nerve damage, as many diabetics do, my employers will have to accommodate my limited mobility.
In the cultural world of the everyday, though, it isn’t quite that simple. To many casual observers, if I don’t look disabled, I must be exaggerating, or faking, or just not trying hard enough — assumptions that many people with chronic (i.e. long-term) conditions struggle to overcome in claiming their status as disabled.
In hindsight, a group of able-bodied college freshmen forgetting their classmates might be disabled should be unsurprising, but it also made me realize the appearance of normality I had worked so hard to build out of the trauma of developing a disability had been so successful that I had even fooled myself. I had integrated my struggle out of existence, ‘passed’ myself as able-bodied into that strange and isolated hinterland, sitting alone in the middle of a classroom full of well intended students. When your success as a disabled person is predicated on not seeming disabled, you get tricked into succeeding yourself out of the societal eye, which is both able-sighted and willfully blind.
One of the strangest and most beautiful things about the scattered community of disabled young adults is our ability to find one another, to build our own networks of friends and found family out of the barely discernible threads of so-called “invisible disabilities.” This term refers to those with afflictions not immediately observable, but disability is never truly invisible, especially not to the people who live it. We see it in the pill bottles and other medical equipment we carry with us, the ways we move to avoid activating chronic pain, the nights away from home we have to turn down because we don’t have our medications; the constant contingency plans, the doctors and insurance companies on speed dial, the “inexplicable” tiredness that comes from micromanaging a body that wants to mismanage itself out of existence.
It’s only natural that the people skilled in reading this language of disability should seek out the other “others.” Without intending it or setting out to find other disabled young adults, I have found myself with a group of close friends who all live with their own disabilities. One friend told me early in our relationship that they had ankylosing spondylitis (essentially an intense form of arthritis) because it affected our work together; another managed his cystic fibrosis (a lung disease) so effectively and so quietly that he never even told me about it until Covid suddenly made it a very direct concern.
Covid changed everything for the disabled community, and also in a way changed nothing — it only forced the rest of the world to look directly at us, to face the possibility of long-term disability themselves. It offered the chance to everyone to confront a reality in which they must take extra effort to keep themselves healthy every day, and to understand the closeness to death that some members of the community live with every day.
Instead of confronting that reality, though, most abled people blinked. Early in the crisis, a student told me she didn’t feel the university needed to take precautions; Covid was only a risk to disabled students, and there weren’t that many of them anyway. Couldn’t they just stay inside? Anti-maskers refused to take on a level of extra care so basic that many disabled people would gladly trade it for the complex routines that keep them healthy. Statisticians and pundits focused on survival rates without examining what that survival looked like; some people still deny the prevalence or even the very existence of long Covid. A friend who still struggles with the after-effects of the disease recently lost her access to care after New York University decided there was no need to keep its dedicated long Covid clinic open.
The absolute tragedy of this avoidant reaction towards disability is that, sometimes, it works. In a society that makes it as hard as possible for disabled people to access affordable care, education, and careers; that treats our diseases as personal failings; and that refuses to see the burdens we carry with us every day and make room for us to set them down, is it any wonder that sometimes we do just go away? And by go away, I mean die, suddenly (and avoidably) die, all too young. Some disabilities, it’s true, lead to a shortened lifespan no matter how well they are managed, and others don’t yet have an effective treatment. There’s also a definite health toll that comes with the stresses of managing these conditions, and of navigating a world that was built for the exclusive — and exclusionary — use of the able-bodied. But the disability community is defined by suffering that could have been avoided, if only society, at both an institutional and an individual level, took the time to care for us, to see our lives as vibrant and valuable, worth living and worth protecting.
Instead, a friend almost had to leave a job they loved because their employer was considering switching to an insurance company that wouldn’t cover the injections they need to function day-to-day - injections that would cost $5000 a week out of pocket. Another is on academic probation in her master’s program because of a visual impairment she couldn’t get a diagnosis for - often a requirement for academic accommodations; another might be unable to complete her degree if the program continues refusing her an accessible student teaching placement. One friend is fighting a landlord to maintain her legally mandated accessible housing; others have had to send dozens of emails back and forth to get basic accommodations like Braille texts and additional walking time between classes. When I moved to a new state last year, I risked hospitalization multiple times while trying to get my out-of-state insurance to cover my lifesaving prescriptions - and then had to explain to housemates over and over again that if they took my insulin out of the fridge, it wouldn’t work and I could end up in hospital, or worse. This is what we mean when we talk about the work of disability, the lack of care and accommodations we face, about the exhausting process of navigating the world as a disabled person.
Many of the policy debates animating public discourse now touch on disability, and yet still the mainstream refuses to look it in the eye. Discussions of criminally high healthcare costs and potentially fatal denials of coverage center the specter of unexpected medical emergencies and of cancer, the one disability the able-bodied seem willing to accept, perhaps because it’s so easily narrativized as an enemy that can be beaten and not a bodily failure that must be endured. The pointless cruelty of denying trans kids healthcare has attracted a level of outrage that the pointless cruelty of denying it to disabled people never has.
I’m not interested in the cynical game of flinging sour grapes at another marginalized group because they’re getting attention. Solidarity with disabled people includes solidarity with trans disabled people, with disabled people abroad, with people disabled, even temporarily, by medical emergencies — and splitting hairs over who’s most at risk or most marginalized was never the point. The point is that when healthcare becomes a political football, the disabled will always, always be caught in the crosshairs. It’s good that people are angry about the current attacks on healthcare, we need their anger, but it’s hard not to be bitter that they were never angry for the disabled when we were the only ones at risk.
I’m not asking for disabled people to be the only, or even the central, topic of the conversation, only for our experiences to be remembered and called upon in discussions about healthcare and public policy. The world calls our disabilities invisible, but we’ve been telling you about them for years — what will it take for you to listen, and finally see us?
Max Huibregtse is a disabled writer and reporter from Worcester, MA. She currently lives in Brooklyn, NY, where she is pursuing a master’s degree.
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