I just got off of a Zoom meeting with Disability Empowerment for Yale (DEFY), and I am left in awe of the strength, persistence, and eloquence of my fellow members. But I am also deeply saddened by the hardships they’ve suffered as a result of being a person with a disability at Yale. One member lost over 20 pounds in a single semester because there were no adequate food options for their severe allergy. Another had to haul their wheelchair up the stairs twice a week because the lift in LC was out of order. Several have had to drop classes because of the lack of accessible reading materials. There were even stories of professors rejecting dean’s excuses and deans refusing to issue academic excuses for students experiencing health crises. One student was asked to write a term paper while on a ventilator at Yale Health. These are just mundane logistical examples of what people with disabilities face on campus.
I have been a member of DEFY since my first year at Yale. But it took a long time for me to truly see myself as part of the disability community. Like many others, I saw my physical limitations as things that medicine needed to fix. And if the doctors failed, it was up to me to “overcome” the obstacles I was presented with.
I was diagnosed with a rare form of bone cancer when I was fifteen, which has left me with several underlying health conditions including osteoporosis and neuropathy. While my community at home was initially supportive, I felt forgotten and unseen after the first phase of my treatment was over. I was not given space to get used to, to talk about, or to understand the new body I was left with. I was told to feel “grateful for having survived.” So grateful, in fact, that I had no right to feel hurt or in pain. No right to feel much of anything at all.
When I got into Yale, though, I hoped that would change. It was just high school – that was bad for everyone, right? College would provide a new opportunity for me to grow and expand, to feel accepted and seen by an institution that had my best interests at heart. I was in for a rude awakening.
The extent to which inaccessibility is woven into Yale’s academic and social fabric is staggering. Our sprawling campus is incredibly difficult to navigate for those of us with mobility issues — not to mention the number of dorms, classrooms, and other critical facilities that are without any form of accessible entry. Yale may offer an accessible van service, but it acts more like a flimsy band-aid on the hemorrhaging wound of architectural hostility. Shuttles are often more than 30 to 40 minutes late, making students who rely on them miss classes that have “zero tolerance” policies regarding attendance.
Academic policies at Yale generally feature no accountability for faculty whose pedagogical practices discriminate against people with disabilities, and students have no recourse. If your reading is in an inaccessible format and you fail the test as a result, it is your fault for not contacting Student Accessibility Services sooner — even though the office’s power is limited, and most issues are deemed “impossible to resolve in time.” What’s more, most professors make little to no mention of policies regarding the most basic of accommodations. Now that things are online, physical access to classrooms may no longer be of immediate concern. But if you require captions to understand the contents of your Zoom call, you need to sign up and wait patiently for approval. Time and time again, the burden falls on students with disabilities to defend and justify their needs. We remain at the mercy of individual professors’ kindness rather than being protected by our academic institution.
The problems we face extend far beyond academics. Accessible dorm rooms are the exception rather than the rule, and since students often host social events and gatherings (in pre-COVID times) in such locations, many in the disability community are excluded from that kind of community-building. Sure, we could ask the hosts to move the event, but with the variety and speed at which college social life operates, this becomes more of a nice idea than a feasible solution. Even if the location itself is accessible, the challenges of getting there remain. Furthermore, accommodations like extra time on assessments are frequently viewed by peers as a sign of weakness or even an unfair advantage, while professors question your competence and academic integrity. Campus culture at large rewards those who work hard and play harder, creating an environment that glorifies unsustainable levels of stress. This is harmful to everyone involved, especially people with disabilities who are more likely to incur physical consequences for fear of being left behind or shunned by peers.
As an organization, DEFY attempts to offer refuge to people with disabilities on campus, tending to the academic, social,and emotional needs of students. We meet every Sunday at 4:00pm in a cramped conference room right next to Student Accessibility Services, serving allergy-friendly snacks and working on projects from the Disability@Yale Survival Guide to our soon-to-be-launched disability studies journal. The very purpose of the organization is to bring the fragmented disability community at Yale together, but the space in which we meet, much like many issues pertaining to disabilities on campus, is transparently neglected. The building is almost impossible to find (you need to take the back entrance, which doesn’t open to the street) and has accessibility problems of its own.
To be clear, the way people with disabilities are treated is not just a Yale problem. It is an issue of civil rights for one of the largest minorities in the United States, one that is particularly impacted by the effects of COVID-19. People with disabilities are at elevated risk of contracting the disease while also being less likely to be considered “worth saving” under healthcare shortages. Furthermore, with many students taking a leave of absence or enrolling remotely, people who rely on Yale Health student coverage are left without care. The roots of such questions regarding disabled people’s “worthiness” are entrenched in the eugenicist ethos of the United States.
People with disabilities have been called lazy, incompetent, inferior, and burdensome for most of recorded history. For example, when schools for Deaf students began to spring up across the United States, sign language was discouraged — often by way of physical punishment — as it was viewed as an inferior form of communication. Prominent families like the Kennedys had one of their daughters lobotomized and rendered unable to speak because they didn’t want their name to be tainted by her “mental issues.”. Even the “American Dream,” which promises that if you work hard enough you will climb the social ladder, has not-so-subtle ableist overtones. What if you cannot work, at least not in the ways typically valorized under capitalism? Many people with severe disabilities who are precluded from contributing to the economy are seen as less than nothing: they are a “liability,” a “waste of space,” or “better off dead” to a nation of social Darwinism. Today, we have the Americans with Disabilities Act of 1990 (ADA), legislation that people with disabilities fought long and hard for, to protect members of this community. But it is still far from enough.
ADA compliance sets the bare minimum that institutions like Yale begrudgingly meet (or pretend to meet, or only nominally meet). It does nothing to alter the attitudes of the larger community towards people with disabilities. Sure, some buildings may have elevators, but they are often out of order, forgotten as the people who need them. Sure, you are signed up to receive certain accommodations, but the professor thinks you are faking it, lying about your missed class due to an emergency doctor’s visit. Even the kindness that people offer hews closer to tokenism than it does true goodness. Comments like “you are such an inspiration,” and “I could never be as strong as you,” serve as a way to distance yourself from the person with a disability, negating their personhood, their humanity.
This is the problem with the narrative people with disabilities are saddled with today. We are the tragic story you heard about from your mother’s sister’s cousin’s friend. We are the inspiration porn on Ellen or Good Morning America. We are the homeless person you see mumbling to themselves in tongues as you make your way to get your morning cup of coffee. But we are rarely just your colleague, your classmate, or your friend. Human beings like any other, facing their own set of unique circumstances, trying their best to be awarded the same opportunities as anyone else.
In so many ways, disability is a forgotten identity. And it is, contrary to popular belief, one with all the complexities, nuances, and intersectional issues that characterize any other social group. Disabilities can be visible, signaled by a wheelchair, cane, or other mobility devices. They can also be entirely imperceptible to passersby. They can be sensory, cognitive, learning, or psychiatric; they can be autoimmune or dietary or a mixture of all of the above. The experiences of people with disabilities are not the same, and the paths to finding this community are vast and winding. But it is still our community, and we take refuge and pride in it regardless of what the world tells us.
“Disability” is not a dirty word, and those of us who identify with it deserve to take up space in this world and on this campus. This is why we need to empower Student Accessibility Services with funding and increased staffing. This is why we need to enforce policies that give students with disabilities access to a variety of spaces and encourage people with disabilities. This is why it is so important for us to have a cultural center at Yale that serves not only to address our everyday needs but to say to the community at large, “we are here, and our perspective matters as much as everybody else’s.”