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Disabilities Access is About Holding Space

Dr. Margaret Price’s life and work twine about the experiences of people with disabilities in higher education.

“My aim is to help dismantle injustices and build forward from the present structures of academe through recognition of what is true now,” says Price, an associate professor of English at The Ohio State University, where she also serves as director of the Disability Studies Program.

Dr. Margaret PriceDr. Margaret PriceThe sentiment — addressing the dearth of disability accommodations in higher education that she and others have experienced — appears in her new book, Crip Spacetime: Access, Failure, and Accountability in Academic Life (Duke University Press, 2024).

“We must recognize how academic practices of ‘access’ become so destructive, and where we want to go instead,” she wrote. “The theory of crip spacetime is my attempt to help explain that difficult question.”

Crip Spacetime draws upon a mixed-methods study of over 250 disabled faculty and staff members.

“The book’s main finding — which is also one key to addressing issues of access in higher education — is that an individualized system of accommodation will always lead us further away from sustainable access,” says Price.

The professor recounts that, through self-discovery, she learned that not all disabilities are visible and, likewise, not all necessary accommodations can be predictable or prescribed.

“Most people assume that we have a system that’s relatively solid, but it’s just got some problems in how it’s executed,” says Price. “However, what I found through my research in Crip Spacetime, and what I explicate in the book, is that the system itself is set up so that access will always be impossible.”

Much of Price’s work arises from lived experiences — from a minoritized position as a disabled, genderqueer faculty member and from a privileged position as a tenured white faculty member. She says she was able to speak candidly about her disabilities as a candidate for hire in higher education.

“I continued to talk about them after I arrived on campus,” she says. “Yet, at no point did anyone ask me about my access needs, either through formal or informal channels. The atmosphere wasn’t at all unwelcoming or hostile — rather, I was often told, ‘just let us know if you need anything.’”

Notwithstanding, she “desperately needed help and was afraid to admit it.”

“What really strikes me is that a person could hardly have been better resourced, or more knowledgeable, about disability in higher education, than me,” says Price. “… And yet, there I was, trying to struggle through, and failing.”

Her journey to this point began in childhood.

At 15, Price was diagnosed with an autoimmune disease, Immunoglobulin A Nephropathy, in which the body attacks its own kidneys. She says she underwent years of treatments that left her with osteoporosis and fractures and exacerbated mental health issues and anxiety stemming from abuse. And although she received subsequent diagnoses for Sjogren’s syndrome, Hashimoto’s disease, and rheumatoid arthritis, she says she did not identify as disabled until her mid-20s.

“With the help of some wonderful mentors and friends, including Eli Clare and Tobin Siebers, I began to realize that disability is a complex and nuanced experience, and I began to come into disability communities,” says Price, adding that her disabilities also compelled her to a professorship.

In 1999, she says, she had been working as a low-salary adjunct instructor whose health insurance was cut off each year. Her then-wife was unable to get a job with health insurance — and for domestic partners.

“Since this was long before the Affordable Care Act, failure to show ‘continuous coverage’ could mean being denied insurance for the rest of my life — a possible death sentence for someone with a chronic illness,” Price explains. “After thinking it over, I decided to apply for Ph.D. programs that offered domestic-partner insurance coverage.”

Price’s challenges to access did not end at obtaining coverage. Requesting accommodations, too, can be “emotionally exhausting” with personal costs such as negative emotion, inequity/indebtedness concerns, or loss of freedom/restrictions. She says disabled academics sometimes do not ask for access; they perform a personal cost-benefit analysis and determine if the cost of asking exceeds the cost of trying to manage access on their own.

Her colleague, Dr. Amrita Dhar, agrees.

“For the longest time, the U.S. academy has failed its non-white, non-male, non-U.S.-citizen, non-straight, and non-able-bodied members in various ways,” says Dhar, an assistant professor of English and affiliated faculty of Near Eastern and South Asian Languages and Cultures at Ohio State. “I see my work and Price’s as holding the academy accountable towards creating access for all its members, especially those who have been historically disenfranchised by the academy.”

Part of the remedy, as Price discusses in Crip Spacetime, is being helpful and actively supportive. Price calls it access priming, “making a concrete suggestion about how one might be helpful or supportive — without yet doing it.” Access priming, she writes, involves holding space for something to happen but not necessarily controlling what does happen.

“People know more than they think they do,” says Price. “Non-disabled people are dealing with access all the time. We make spaces for little kids. Disability doesn’t have to be a mystery.”

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