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.\u00a0<\/span><\/p>\n 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\u2019d no longer be able to rely on the functional capacities of my youth.\u00a0<\/span><\/p>\n In theory, this made sense. Academia would seem to be the kind of place where one <\/span>could<\/span><\/i> turn an appreciation of critical thinking, writing, and research into flexible forms of labor. After all, isn\u2019t higher education where new knowledges and perspectives are developed?<\/span><\/p>\n 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\u2019d find manifold obstacles set in my way\u2014obstacles 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.\u00a0\u00a0<\/span><\/p>\n In his book, <\/span>Academic Ableism: Disability and Higher Education<\/span><\/i><\/a> (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 <\/span>designed<\/span><\/i> as a training ground for the most capable, hyper-able students. Dolmage doesn\u2019t flinch away from discussing the university\u2019s 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.<\/span><\/p>\n To the extent that ableism is understood as the appraisal of able-bodiedness\u2014invisibilizing disability while reinforcing able-bodied supremacy\u2014academic institutions have a long history of excluding body-minds marked as \u2018other.\u2019 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\u2014a deeper history that illuminates the many contradictions of education as a site for progress and equity.\u00a0<\/span><\/p>\n Dolmage additionally uses three spatial metaphors to discuss changes in the modern world of higher education. First, the <\/span>steep steps<\/span><\/i> reflect exclusionary landscape dominant in many of North America\u2019s 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\u00a0 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<\/a> (IDEA) of 1975, and the American with Disabilities Act (ADA) of 1990.\u00a0<\/span><\/p>\n Secondly, he highlights the <\/span>retrofit<\/span><\/i>, which refers to structures, like ramps, appended to old buildings and installations in order to make these architectures more accessible\u2014albeit in ways that are provisional, out-of-sight, and almost passive-aggressively minimalist. Finally, he devotes the latter chapters of his book to <\/span>universal design<\/span><\/i><\/a>, a framework that refers to the deliberate engineering of spaces for the inclusion of the maximum number of people, anticipating\u2014instead of reacting to\u2014diversity.\u00a0\u00a0<\/span><\/p>\n From the alarming prevalence of mental health crises, scandals around sexual discrimination and assault, the incidence of \u2018sick buildings\u2019 (like my institution\u2019s \u2018<\/span>cancer cluster\u2019<\/span><\/a>), and racist and sexist micro-aggressions that have become common features of university life in the Trump years, there\u2019s no shortage of examples of academic ableism. Instead of engaging all of these different themes, I turn to something that I\u2019m very familiar with as a sixth-year Ph.D. student: the accommodations process.<\/span><\/p>\n 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?<\/span><\/p>\n For one thing, since the ADA, students with disabilities familiar with the mandated, supportive infrastructure of the K-12 system\u2014which includes Individualized Educational Plans, or IEPs\u2014often 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\u2019s disability services office.\u00a0<\/span><\/p>\n 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 <\/span>their<\/span><\/i> responsibility to secure the necessary paperwork in their own time. From the beginning, disability is only construed as a negative, medical and legal concept.\u00a0<\/span><\/p>\n Many colleges, in fact, will legitimize the accommodations process by highlighting the importance of building self-advocacy skills among young adults\u2014while nevertheless providing little in the way of tangible resources students could access and learn from.\u00a0\u00a0\u00a0<\/span><\/p>\n 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 <\/span>Dolmage, 2017<\/span><\/a>).<\/span><\/p>\n 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.<\/span><\/p>\n Once I realized how much work was required for\u00a0an \u2018accommodation,\u2019 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 <\/span>before<\/span><\/i> my progressive condition had worsened to what it is now.<\/span><\/p>\n 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, \u2018stock set\u2019 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\u2019s limited evidence that such an accommodation (and not some other) is the only or even optimal form of support.<\/span><\/p>\n Sometimes, the accommodations don\u2019t 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.\u00a0<\/span><\/p>\n 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\u2019s unsurprising that countless <\/span>virtual guides<\/span><\/a> 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.<\/span><\/p>\n 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\u2014a 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\u2019s support system, as well as the professor\u2019s willingness to oblige.\u00a0<\/span><\/p>\n For Dolmage, the accommodations process is best exemplified by the second spatial metaphor of the <\/span>retrofit<\/span><\/i>. Like backdoor ramps appended to old buildings, \u2019accommodations\u2019 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 <\/span>access<\/span><\/i>, and more about holding up appearances within a legal framework.\u00a0<\/span><\/p>\n 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.<\/span><\/p>\n Last year, when I sought <\/span>reasonable accommodations for my MS<\/span><\/a> in my role as a Teaching Assistant, I was immediately reminded of the lens through which administrators understood my medical condition.\u00a0<\/span><\/p>\n Concerned that I would be left between one of two miserable options\u2014work a teaching position that could endanger my long-term health, or wind up without job or health care security\u2014I 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\u2014these were concerns that weighed heavily on my day-to-day life, but were turned into mere diagnostic criteria against which everything else\u2014including my integrity and genuine need for accommodations\u2014was evaluated.\u00a0<\/span><\/p>\n Unsurprisingly, then, the very first conversation I had around employment accommodations emphasized the \u2018business needs\u2019 of the hiring department over my own medical and corporeal needs. When I turned to the student workers\u2019 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\u2014that is, academia\u2019s role in protecting the most vulnerable and marginalized students.\u00a0<\/span><\/p>\n 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.\u00a0<\/span><\/p>\n Most striking to me, however, was the d\u00e9j\u00e0 vu I\u2019d experience as <\/span>I went from one office to the next<\/span><\/a>, many administrators claiming their hands were tied while spouting some obligatory refrain about\u00a0 \u2018legal responsibilities\u2019\u2014as if doing so would magically absolve them, let alone get rid of the problem that was at hand.<\/span><\/p>\n It was as if they were betting on a war of attrition\u2014delaying action for as long as possible with the hopes the problem student (i.e. me) would just give up or look elsewhere.<\/span><\/p>\n This is incredibly disappointing given how <\/span>an advanced degree can truly improve the opportunities and life chances of students with disabilities<\/span><\/a>. 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.<\/span><\/p>\n For too many of our youth, it is still an illusory promise that has failed because so, too, did our political imagination.<\/span><\/p>\n 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 <\/span>disability justice<\/span><\/a> in relation to higher education\u2014one that goes beyond a minimal, medical-legal framework, and instead <\/span>embraces<\/span><\/i> different human abilities and capacities.\u00a0<\/span><\/p>\n 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.\u00a0<\/span><\/p>\n It\u2019s 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\u2019m 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?\u00a0<\/span><\/p>\n 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 <\/span>principles of universal design<\/span><\/a> can help answer the question of logistics when dealing with issues of broader access.\u00a0<\/span><\/p>\n If only we would begin the hard work of trying to create these models <\/span>today<\/span><\/i>, instead of cementing old hierarchies and mechanisms of social exclusion. It\u2019s not an exaggeration to say that the lives of young people hang in the balance.<\/span><\/p>\n Krys M\u00e9ndez<\/strong> is a sixth-year Ph.D. Candidate in Ethnic Studies. Krys\u2019s research examines Central American migration, urban geography, and security politics. You can learn more about Krys in his <\/span>fundraiser page<\/span><\/a> for more aggressive MS treatment, or keep up with his <\/span>Facebook page<\/span><\/a> or <\/span>website<\/span><\/a>. You can follow him on Twitter: <\/span>@KrysMendez88<\/span><\/a><\/p>\n <\/p>\n Support Disability Media and Culture<\/b><\/p>\nAbleism and the Neoliberal University<\/b><\/h5>\n
The Accommodations Process<\/b><\/h5>\n
The Limits of ADA Legislation<\/b><\/h5>\n
Universal Design and Disability Justice<\/b><\/h5>\n
About<\/b><\/h3>\n
![\"Krys,](\"https:\/\/i0.wp.com\/disabilityvisibilityproject.com\/wp-content\/uploads\/2019\/09\/Krys-Chiapas-2015.jpg?resize=336%2C427&ssl=1\")