A recent essay published in the campus newspaper at a large public university reports that the university’s Disability Resource Center (DRC) will be changing its name, as the word “disability” apparently causes students not to seek out services.
As evidence for the need for the name change, the writer of the essay notes that medical providers were writing over the word “disability” on student documentation submitted to the DRC for accommodations. In its place, providers wrote terms like “medical condition” or “psychological diagnosis.” The writer states that this behavior by medical providers legitimizes the name change, “because it’s coming from a medical professional who ultimately disagrees with the term disability.” The writer adds, “The term itself can lead to a negative perception, invalidating the experiences of students with medical conditions and undermining what they can accomplish.”
Woah.
I’m not going to call out this student. It’s clear that the writer isn’t familiar with disability culture and history. As well, it’s important to acknowledge that a significant proportion of students with disabilities are not seeking accommodations. Just last week, UCLA’s Daily Bruin reported that only about a quarter of the 31 percent of UC graduate students who identify with disability receive accommodations. Of course, there’s no evidence that these students are avoiding the campus’ Center for Accessible Education (CAE) because of the stigma associated with disability. It could be because students learn by word of mouth that the center is understaffed; or that it may take months to get accommodations; or that the accommodations offered often aren’t very helpful. (The student writer’s essay was not about the UC system in case you’re wondering.)
I also think it’s important to acknowledge that the paternalistic and denigrating attitudes that this writer expressed about disability are quite common. The director of the campus DRC even tells the writer of the essay, “On average, the DRC students have a very high grade-point average and excel academically. Despite their challenges, students can accomplish any goals they are willing to meet, but the term ‘disability’ overrides that concept.”
The social model of disability, in its simplist form, says that disability arises from the structures and attitudes in the built environment. So, if someone’s needs can be accommodated, are they no longer disabled? Thanks to corrective lenses, early screening, and advances in eye surgery, for example, millions of people who have experienced some vision loss can live with full access to mainstream society. The same could be said about many people with mental health conditions thanks to the wide availability of psychotropic medications.
Not everyone who has disability identifies as disabled, and that’s okay. But, should having “a very high grade-point average” and “exceling academically” preclude people from identifying as disabled, as the director of the DRC claims? I argue that the normalization of these types of beliefs would set the disability rights movement back by decades. For one, the prioritizing of campus resources for students who don’t identify with disability over those who do reinforces hierarchies of disability and creates a false dichotomy of “good disabled” and “bad disabled.” By catering to those students who are “not really disabled,” the DRC is not only invisibilizing disability on campus, but sending a clear signal about who is really welcome on campus. Hint: it’s not disabled students.
In his book, What We Have Done, a chronicle of the disability rights movement, Fred Pelka observes that the medical model of disability reinforces the association of disability with inability, specifically the inability to work. “If disability is defined as the inability to work,” according to Pelka, “it follows then that anyone working a steady job was by definition not ‘disabled’—no matter what [their] physical or mental attributes or impairments.” By this logic, it follows that students who have “a very high grade-point average” and who “excel academically,” cannot be disabled either.
But it is actually dangerous for disabled people to give others–whether medical providers or government bureaucrats–the power to define us by arbitrary metrics, whether to ascribe labels that we have not consented to, or to take away our agency to identify as we see accurate. This power to reclaim our disabled identities is what the early disability rights activists fought hard for. The writer says it’s “ironic” that “most of the university’s students have invisible disabilities, mainly psychological or learning-related diagnoses.” But what’s actually ironic is that the writer doesn’t realize, as someone with a mental health condition at university, that the early disability rights activists fought tooth and nail for people with mental health conditions to be included under the protections of the Americans with Disabilities Act (ADA).
In his meticulously researched history of the drafting of the ADA, Enabling Acts: The Hidden Story of How the Americans with Disabilities Act Gave the Largest US Minority Its Rights, Professor Lennard J. Davis writes that, at committee meetings, “some groups objected to the representation of other groups in the bill–particularly the cognitively disabled, the mentally ill, and people with HIV/AIDS. The core group of leaders and especially [Patricia] Wright made it clear that all groups had to be included and that none could be carved out or thrown under the bus.” (Patricia Wright is a co-founder of the Disability Rights Education & Defense Fund.)
Even the choice to say, “I’m not disabled” despite having a medical diagnosis, came from disability rights activism rather than advances in medical care. As Paul K. Longmore explains in his essay, Why I Burned My Book, “Disability is not an entity that a clinical examination can correlate with the numbers on a schedule of impairments. It is not located in pathological individual bodies. It is not simply caused by impairments or by physiological features that depart from the typical. Instead, disability is produced through the dynamic interplay of a complicated constellation of factors that includes, not only stigmatized physical and mental limitations and physiological differences, but also physical and architectural environments, social arrangements and cultural values, and the impact of public policies themselves. In addition, all of the factors that make ‘disability’ and shape the human experience of disability have, like all historical phenomena, changed over time. Disability, then, is not a fixed thing. It is an elastic and dynamic social category. It is not an objective condition. It is a set of socially produced, highly mutable, historically evolving social identities and roles.”
According to Longmore, the deputizing of medical authorities to define disability was a way for governments (and universities) to limit who receives services and accommodations. One reason that the early disability rights activists fought so hard against the medical model of disability was not because doctors were forcing disability labels on people, but rather because the medical profession gatekeeps disability and often prevents people from accessing the services and supports that they need.
Longmore, who was a highly esteemed scholar of disability studies, was also a partially paralyzed polio survivor who relied on personal assistants to help with activities of daily living, including showering and eating. Longmore relied on California’s In-Home Support Services program, a government benefits program, to cover the costs for his personal assistants and ventilator. The costs for these services far exceeded any income that Longmore could ever hope to earn as a professor or any other job for that matter that he would have been hired for at the time. Because the government defined disability as the inability to work, for many years Longmore was forced not to work, or he would have otherwise lost his indispensable government-provided care.
These stories are not “in the past.” Just last year, NPR published a story about Tabi Haly, a disabled person with spinal muscular atrophy who, like Longmore, depends on personal assistants, and depends on SSI and Medicaid to provide these services. But, as a vice president at JPMorgan Chase, she was earning too much income, according to the Social Security Administration (SSA). In other words, SSA determined that she was no longer disabled, despite that, even with her successful career, she would never be able to afford the medical care that she needs to survive, even if she switched to her company’s private health insurance.
Disability as an identity is something that the early disability rights activists fought for. When people today talk about disability pride, that’s something that started because of the disability rights movement. In a way, perhaps the splintering of the disability community is the end result of its successes, in that many disabled people today can take their rights for granted, rights that were fought for tooth and nail. But, no matter how distant we grow from our historical roots, we must never allow ourselves to go back to a time when disability was something to be feared, pitied, or shamed. Indeed, as the disability rights activist, Robert Funk, has noted, those feelings are the roots of disability discrimination.
