As universities create programs of study focusing on identity, disability studies has historically been left out. But some students and professors are trying to change that.
At a recent seminar sponsored by the Duke Franklin Institute for Humanities, Kathy McMahon-Klosterman, professor emerita of educational psychology at Miami University of Ohio, shared some of her strategies for creating supportive, inclusive and accessible spaces for disabled individuals.
The educator and activist’s overarching argument was that people with disabilities are asking for civil rights—no more, no less. She has thus dedicated her career to promoting social equity for individuals with disabilities.
At Miami University of Ohio, she has succeeded in establishing a disability studies minor that has rapidly grown in popularity and renewed accessibility efforts across grounds.
Designing a campus that actively welcomes students with disabilities, learning differences, chronic illnesses and mental health challenges begins with conscious engagement in disability studies, McMahon-Klosterman argued.
What is ‘disability studies’?
Disability studies explores a wide spectrum of human conditions, including physical, mental, intellectual and developmental impairments—both visible and invisible.
The discipline’s primary aim is to consider the “voice of disability,” said Marion Quirici, a lecturing fellow in the Thompson Writing Program and faculty adviser to the Duke Disability Alliance.
The DDA is a student organization that focuses on issues of inclusivity, accessibility and stigmatization through its activism, programming and publications.
“Disability studies is about considering disabled individuals as active participants of society, not as passive recipients of care,” Quirici said. “It is a civil rights issue, and a diversity issue.”
She added that it is important to recognize that disability can be an identity, not just a personal hardship.
Junior and former DDA President Jay Pande emphasized the fact that Duke has made a sizable effort to facilitate the study of other aspects of identity—such as gender, sexuality, race and ideology—and that disability is also an important part of the human experience to consider.
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"I think it is helpful to be able to look at your own life through a theoretical lens,” he said. “Collecting all of the thinking that has been done on issues of identity is helpful in processing the stigma that you might experience as an individual, and helps you reexamine and have a better relationship with your own identity.”
Two of Quirici’s Writing 101 courses—Disability and Representation and Neurodiversity, Narrative, Activism—address key topics in disability studies, examining social perceptions of the individual, medical and cultural understandings of consciousness.
Last semester, her students created multidisciplinary “activism projects” that examined perspectives on disability and accessibility in the community, which culminated in a student exposition during Disability Pride Week. This semester, students are engaging in a public scholarship exercise and writing white papers, op-eds and articles in hopes of drawing attention to disability issues at Duke, and proposing specific changes that would improve accessibility and inclusiveness.
“It seems to me that disabilities are often viewed as an individual ordeal, and often aren’t examined through a broader lens,” said sophomore Maddie Sparrow, one of Quirici’s former students. “Through disability studies courses, however, you can more easily see and study the systematic oppression disabled people face on both a societal and an individual level.”
As the number of disability studies programs nationwide continues to multiply, McMahon-Klosterman explained that her students have found courses in Miami’s program to be a great complement a variety of majors.
“A lot of people at Duke, for instance, think they’ll go into health care,” said Deborah Gold, professor in psychiatry and behavioral sciences. “The fact is, we are faced with disability in our daily lives all the time. It’s imperative that [students] recognize that they will come into contact with disability, and learn how to help people effectively.”
Gold teaches courses such as Aging and Health and Medical Sociology, which focus particularly on the experience of disability in old age.
“I see very little evidence of people teaching about disability in earlier years of life, and I think that’s a loss," she added, recommending that disability studies could be incorporated into developmental psychology courses.
Disability scholarship in perspective
To respond to growing interest in the discipline at Duke, Quirici is compiling a list of interdisciplinary courses that have disability-related content. The Health Humanities Lab has also been compiling a list of courses at the intersection of science and humanities for several years now. These could all be included in a prospective health and disability studies certificate program, Quirici said.
However, some students are already tuned in to disability issues.
Junior Ann Bailey has taken many of the disability-focused classes available at Duke, including Philosophy of Disability and Comparative Disability History.
She explained that the field is “critical to both understanding ourselves, and humanity as a whole”.
Sophomore Maddie Fowler has created a Program II in Disability Studies and Ethical Medicine, through which she hopes to examine how scientific approaches to disability have been influenced by assumptions and preconceptions in society.
Fowler’s brother has autism spectrum disorder, which has significantly informed her interest in disability studies. She explained that when she was younger, the only option she saw for helping him was to become a scientist and learn to change the things that were making him different.
“Understanding the things that make my brother unique—understanding that these can be things that you celebrate—really changed my perspective,” she said.
Challenges on campus
“Whether our disability is permanent, temporary or chronic, diagnosed or undiagnosed, accommodated or unaccommodated, disability justice benefits everyone,” Quirici said in the opening of McMahon-Klosterman’s seminar.
Although proponents are fervent in their support of the discipline, the quest to justify the merit of disability studies and legitimize it in academia has not been an easy task.
During her seminar, McMahon-Klosterman recounted the struggles in her own journey of establishing a disability studies program. For instance, when her students hosted an event, inviting passersby to consider using the accessible entrances of buildings as opposed to the main door, several faculty members called the police and reported that she was barricading the building.
“Duke is definitely taking steps towards more open discourse, but there is still considerable resistance,” Fowler said, explaining that despite its continuous efforts, DDA’s proposed student-led orientation week discussion on accessibility challenges on campus was not included in this year’s schedule.
Around 40 universities and colleges across the country currently have programs in disability studies—but not Duke—according to the American Sociological Assocation.
As the prospect of introducing disability into academia is being debated, there remains the question of bringing academia to those with disabilities.
Leigh Fickling, director of the student disability management system at Duke, suggested drilling down requests to specific issues.
“Students sometimes come up to the administration and say, we want this campus to be fully accessible by 2030," she said. "Well, what does that mean?”
Junior and DDA President Deepti Agnihotri, who is also a health and science department head for The Chronicle, explained that the DDA was now bringing more tangible proposals to the table. For example, the organization has made efforts to establish an American Sign Language course at Duke, for which they have already rounded up around 70 interested students.
Fickling agreed that one of Duke’s biggest challenges in creating accessible spaces is that it's impossible to predict the accommodations a student might need until they are accepted and contact the Student Disability Access Office about it.
"Our whole process relies on self-disclosure," she said.
SDAO’s website now includes a form that allows students to report accessibility issues they have identified on campus.
“With every student, we become a more accessible campus,” Fickling said.
Inclusion and allyship
“When we view disability as an individual hardship, we put the burden on that individual to assimilate into a non-disabled culture and join an environment...that restricts their freedom,” Quirici said. “If we’re going to have equal access, we have to be willing to make structural changes.”
In a faculty focus group following her seminar, McMahon-Klosterman discussed the importance of understanding disability issues in an academic setting, and emphasized the need to give faculty sensitivity training around disability.
Fickling explained that Duke carries the responsibility of providing any accommodations an eligible student might request, and that there are only two cases under which SDAO can say no to an accommodation under ADA: if it changes the fundamental nature of an academic program, or if it may cause "undue burden," typically in financial terms.
She explained that even though high costs—such as those associated with braille translations, captioning videos and sign language interpreters—can technically be a reason to revoke an accommodation request, she has never seen anybody refused necessary and appropriate accommodations in her eight years on campus.
But even if students succeed in obtaining accommodations through SDAO, the paperwork alone does not guarantee inclusion on campus, or in class.
“Some professors might be mistrustful of [a student’s] accommodation request, and that can be very hurtful and inhibiting,” Quirici said. “They might think [the student] is trying to get something they don’t deserve.”
Fickling emphasized that accommodations granted by SDAO are not meant to create an unfair advantage for anybody.
"People still need to meet the admission requirements, and we are not going to change what is required in class just because someone has a disability,” she said. “We’re going to give you an accommodation that levels the playing field.”
Fowler additionally expressed that Duke’s campus culture of effortless perfection might make it difficult for some individuals to ask for help in the first place.
Fickling echoed this worry, stating that though there are 700 students registered in the Disability Management System, and she suspected that there are many more who could potentially benefit from accommodations but have not reached out to their office due to the stigma associated with disability.
Disability activism and studies does not only concern individuals with first-hand experience with disability. A person’s means of connecting to it might also be in the form of what McMahon-Klosterman called allyship.
“Where are you positioned in the world with regard to race, class, ethnicity, religion, gender, disability—where do you have privilege?" she asked her audience.
The audience was silent.
“If you can say, ‘I’ve never had to think about this,’ that’s privilege," she said.