Academic Ableism: Fighting for Accommodations and Access in Higher Education

Academic Ableism: Fighting for Accommodations and Access in Higher Education

 

Krys Méndez Ramírez

 

Six years ago, when I first started applying to graduate school programs as someone with a chronic illness, I was aware of many of the somber stories then coming from an exodus of disillusioned academics. From the higher-than-average growth of student loan debt, to the ‘epidemic’ of depression and mental illness, to the precarity of adjuncts and the growing power of university administrators. 

Against all these trends, and perhaps against my better judgment, I still chose grad school for a number of reasons, including my own misgivings about the non-profit industrial complex and its promise of meaningful (if less remunerated) work. 

Living with Multiple Sclerosis (a progressive, neurodegenerative condition in which the immune system attacks the brain and spinal cord), I thought it would make sense for me to pursue an advanced degree that would allow me to find more work flexibility, should the time arise when I’d no longer be able to rely on the functional capacities of my youth. 

In theory, this made sense. Academia would seem to be the kind of place where one could turn an appreciation of critical thinking, writing, and research into flexible forms of labor. After all, isn’t higher education where new knowledges and perspectives are developed?

Sadly, the reality of higher education in North America would indicate otherwise. It was particularly when I tried to petition for much-needed accommodations as an academic employee that would learn I’d find manifold obstacles set in my way—obstacles institutionalized within and guarded by a variety of legal and bureaucratic bodies that could not see me as anything other than a liability, an implacable agitator, or just a threat to the academic status quo. Confronted with the stubborn resistance of an ableist academic culture, I realized the extent to which universities would go to marginalize issues of access and inclusion for those with disabilities.  

Ableism and the Neoliberal University

In his book, Academic Ableism: Disability and Higher Education (2017), disability studies scholar Jay T. Dolmage argues that disability has always been constructed as the inverse, or opposite, of higher education in large part because the college campus was always designed as a training ground for the most capable, hyper-able students. Dolmage doesn’t flinch away from discussing the university’s eugenic past of experimentation on communities of color and the mentally ill, many of whom were warehoused in those lower-order institutions like the prison and the asylum.

To the extent that ableism is understood as the appraisal of able-bodiedness—invisibilizing disability while reinforcing able-bodied supremacy—academic institutions have a long history of excluding body-minds marked as ‘other.’ Dolmge, moreover, suggests that disability is still a tense battleground in the world of education in part because of the original design and purpose of North American universities—a deeper history that illuminates the many contradictions of education as a site for progress and equity. 

Dolmage additionally uses three spatial metaphors to discuss changes in the modern world of higher education. First, the steep steps reflect exclusionary landscape dominant in many of North America’s most prestigious schools, meant to reflect a classical aesthetic of age-old hierarchies, as well the superiority of Western civilization. With the steep steps leading to the pinnacle of the ivory tower, it is  emblematic of the architectural blueprint used at many, if not most, U.S. colleges prior to landmark legislation like the Individuals with Disabilities Education Act (IDEA) of 1975, and the American with Disabilities Act (ADA) of 1990. 

Secondly, he highlights the retrofit, which refers to structures, like ramps, appended to old buildings and installations in order to make these architectures more accessible—albeit in ways that are provisional, out-of-sight, and almost passive-aggressively minimalist. Finally, he devotes the latter chapters of his book to universal design, a framework that refers to the deliberate engineering of spaces for the inclusion of the maximum number of people, anticipating—instead of reacting to—diversity.  

From the alarming prevalence of mental health crises, scandals around sexual discrimination and assault, the incidence of ‘sick buildings’ (like my institution’s ‘cancer cluster’), and racist and sexist micro-aggressions that have become common features of university life in the Trump years, there’s no shortage of examples of academic ableism. Instead of engaging all of these different themes, I turn to something that I’m very familiar with as a sixth-year Ph.D. student: the accommodations process.

The Accommodations Process

Having communicated with numerous disabled student organizers and leaders across the country, one of the most common complaints I hear, regardless of disability or health condition, revolves around the process of securing accommodations. Why?

For one thing, since the ADA, students with disabilities familiar with the mandated, supportive infrastructure of the K-12 system—which includes Individualized Educational Plans, or IEPs—often discover that more labor is expected of them once they enter a college setting. Among the first of those hurdles is that of securing accommodations through the institution’s disability services office. 

For many college-bound students, the first representation of disability (if it makes its presence known at all) is typically made in the form of a legal statement at the end of a syllabus informing them of their responsibility to secure the necessary paperwork in their own time. From the beginning, disability is only construed as a negative, medical and legal concept. 

Many colleges, in fact, will legitimize the accommodations process by highlighting the importance of building self-advocacy skills among young adults—while nevertheless providing little in the way of tangible resources students could access and learn from.   

While some students are able to do the complicated and courageous self-advocacy work it takes to communicate with medical providers, university administrators, and numerous college professors (many of whom have very little familiarity with disability or medical conditions), far too many students have undoubtedly been dissuaded. In fact, as much as two-thirds of college students with disabilities have not alerted their campus of their condition(s) (see Dolmage, 2017).

I was, in fact, one of those college students. I was diagnosed with MS while home for the summer break; when I returned the following semester, I decided to register with the disability services office as a security measure. In trying to balance my academic goals and long-term health needs, I wanted to ensure that I’d be able to rest and pace myself as needed in the event of an MS flare.

Once I realized how much work was required for an ‘accommodation,’ I decided against it, instead figuring out ways to take naps during the day (thanks to living near central campus) and scheduling everything around my sleep schedule. That was before my progressive condition had worsened to what it is now.

For the few who are able to get the necessary paperwork on time, there are still other hurdles. Administrators and specialists in charge of handling academic accommodations may meet with a student and offer them a letter declaring one of the limited, ‘stock set’ of accommodations typically offered at North American colleges. Sometimes, these accommodations hardly do anything more than request additional time for an exam, even if there’s limited evidence that such an accommodation (and not some other) is the only or even optimal form of support.

Sometimes, the accommodations don’t fit the program of study, as was the case for me during my early grad school years, where my letters would ask for extensions on exams when I only received term papers and projects. 

Ultimately, it is the professor who has final authority on whether or not to implement recommended accommodations. Given the numerous times students must do this in their academic careers, for various professors, it’s unsurprising that countless virtual guides and forums exist for disillusioned students who have been hurt, ignored, or dismayed by professors unwilling to adapt their syllabi for purposes of inclusion. In fact, the high standards used by many disability services offices may pose too much of a challenge, particularly among students who are newly diagnosed, unfamiliar with the accommodations lingo, or disappointed with the limited number of accommodations that hardly benefit their individual programs of study.

While some students may be able to access the devices and resources they need to thrive in academia, the accommodations process may be better seen as another bureaucratic hurdle the student needs to master and overcome—a process that can create as many roadblocks as entryways, all dependent on the tenacity of the student (who must find the time to seek medical providers able and willing to write a legal note), the student’s support system, as well as the professor’s willingness to oblige. 

The Limits of ADA Legislation

For Dolmage, the accommodations process is best exemplified by the second spatial metaphor of the retrofit. Like backdoor ramps appended to old buildings, ’accommodations’ are meant to provide a means of leveling the playing field for a disadvantaged group of students. But like much of the benign-sounding legal terms that have stuck with us since the ADA, the purpose of accommodations may be less about ensuring true, genuine access, and more about holding up appearances within a legal framework. 

In other words, the Kafka-esque bureaucracy around disability services on college campuses may be more about protecting the university from lawsuits and campus organizing, than it is about protecting the needs of students or assuaging concerned parents.

Last year, when I sought reasonable accommodations for my MS in my role as a Teaching Assistant, I was immediately reminded of the lens through which administrators understood my medical condition. 

Concerned that I would be left between one of two miserable options—work a teaching position that could endanger my long-term health, or wind up without job or health care security—I of course did everything in my power to protect myself against a bureaucracy that hardly understood the nuances of living with a progressive, autoimmune condition. The pain, the fatigue, the unpredictability—these were concerns that weighed heavily on my day-to-day life, but were turned into mere diagnostic criteria against which everything else—including my integrity and genuine need for accommodations—was evaluated. 

Unsurprisingly, then, the very first conversation I had around employment accommodations emphasized the ‘business needs’ of the hiring department over my own medical and corporeal needs. When I turned to the student workers’ union to serve as my advocate, my personal predicament as a graduate student with MS was turned into political fodder for discussing the responsibilities and limits of academia—that is, academia’s role in protecting the most vulnerable and marginalized students. 

Rather than target an unequal policy around accommodations, many parties in my accommodations case instead turned to blaming me, my doctors, or my union for what happened, as well as the lack of graduate student employment options. 

Most striking to me, however, was the déjà vu I’d experience as I went from one office to the next, many administrators claiming their hands were tied while spouting some obligatory refrain about  ‘legal responsibilities’—as if doing so would magically absolve them, let alone get rid of the problem that was at hand.

It was as if they were betting on a war of attrition—delaying action for as long as possible with the hopes the problem student (i.e. me) would just give up or look elsewhere.

This is incredibly disappointing given how an advanced degree can truly improve the opportunities and life chances of students with disabilities. It is no wonder, then, that the academy overall stands in as a metaphor for the deferred dreams and restricted opportunities of sick and disabled communities.

For too many of our youth, it is still an illusory promise that has failed because so, too, did our political imagination.

Universal Design and Disability Justice

To end this on an optimistic note, I should note that, while the issue over accommodations is still a question mark in my case, it has also pushed me into thinking about the meaning of disability justice in relation to higher education—one that goes beyond a minimal, medical-legal framework, and instead embraces different human abilities and capacities. 

After all is said and done, such a radical revision of education may in fact look like something proposed by the architects of universal design. 

It’s forced me to rethink some of the most banal features of academic life, like the syllabus, and like many other disability studies scholars and pedagogues, I’m left wondering: how do we create the sort of classroom that gives the most number of people access, while still maintaining the ethics and standards of teaching we need to prepare youth for the challenges ahead? 

Even if seen as an overly utopian project, there may be more to the notion of universal design than we often give credit for. We need to begin somewhere, and the principles of universal design can help answer the question of logistics when dealing with issues of broader access. 

If only we would begin the hard work of trying to create these models today, instead of cementing old hierarchies and mechanisms of social exclusion. It’s not an exaggeration to say that the lives of young people hang in the balance.

About

Krys Méndez is a sixth-year Ph.D. Candidate in Ethnic Studies. Krys’s research examines Central American migration, urban geography, and security politics. You can learn more about Krys in his fundraiser page for more aggressive MS treatment, or keep up with his Facebook page or website. You can follow him on Twitter: @KrysMendez88

 

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