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Editor’s Note: This article references historical documents and organizations related to disability, some of which contain mentions of slurs against people with disabilities.

Mercy Xie, a student in the Syracuse University Disability Law and Policy Program, said she has familiarized herself with two major models of disability: the medical model and the social model. As put by Xie, the difference is that the medical model makes a disabled person’s body the issue while the social model makes the lack of accommodations in society the issue.

Growing up in China after losing one of her legs below the knee, she said the emphasis on the medical model made her feel like a burden to her family and school. At SU, however, Xie has examined herself through the lens of disability studies.

“Disability Studies has really empowered me for many years,” Xie said.

When SU’s School of Education established its Disability Studies program 30 years ago in 1994, it was the first of its kind nationally. With the Americans with Disabilities Act being only 4-years-old and deinstitutionalization — through the closure of largely inhumane state-run mental health facilities — being realized, the ‘90s were a slate waiting to be rewritten for disability policy.

SU community members had worked for decades prior, both in their research and advocacy, to lay the groundwork for the ideas Xie and many other students now study within the university. The mixture of analysis and application of disability studies has stuck throughout the entire program’s existence.

Despite its formation in the ‘90s, the principles of disability studies existed for decades earlier. Steven Taylor, who helped establish SU’s program and was named Centennial Professor of Disability Studies in 2008, wrote “Before It Had a Name: Exploring the Historical Roots of Disability Studies in Education.”

In its foreword, Taylor wrote that the idea of disability as a social phenomenon emerged in at least the 1960s.

“To regard disability as a social construction or creation is not to deny human variation,” Taylor wrote. “Variations according to ability do not need to be valued negatively or wrapped in stereotypes and stigma. Disability is not viewed as a condition to be cured but rather as a difference to be accepted and accommodated.”

One of the biggest names in disability studies’ prehistory was Burton Blatt, who was named dean of the School of Education in 1976. Though, according to his namesake institute at SU, he’s best remembered for “Christmas in Purgatory,” a “photographic exposé” of the conditions in mental institutions published in 1966.

The book, both in its writing and photos, describes the dormitories people with disabilities had been forced into for decades. In one instance, Blatt described the recreation rooms as having an “overpowering” odor, a byproduct of feces being smeared into cracks in its wooden floors.

“There is a hell on earth, and in America there is a special inferno,” Blatt wrote in the book’s opening. “We now have a deep sorrow, one that will not abate until the American people are aware of — and do something about — the treatment of the severely mentally retarded in our state institutions.”

In its summary of Blatt’s papers, SU’s Special Collections Research Center wrote that the book caught President Lyndon B. Johnson’s interest. Johnson personally called Blatt for additional copies of the book and, according to the SCRC, “Christmas in Purgatory” reportedly influenced Johnson’s then-recently established Committee on Mental Retardation. Today, the group is now known as The President’s Committee for People with Intellectual Disabilities.

Three years after the book was published, Blatt made his way from Boston University to SU, where he was the director of the Division of Special Education and Rehabilitation at SU’s School of Education.. He also founded the Center on Human Policy and solidified his impact through three figures: Taylor, Bob Bogdan and Doug Biklen.

Rachael Zubal-Ruggieri, now an administrative assistant at the Burton Blatt Institute, said she was Taylor’s “left hand” while at SU. Zubal-Ruggieri said Taylor, Bogdan and Biklen greatly changed the way disability was taught at SU.

“They kind of integrated inclusive teaching into their curriculum at the school,” Zubal-Ruggieri said. “Over time, they radically changed how the program was taught. And this began in the ‘70s with the recruitment of these three men.”

They also changed how disability was studied. Years before the word “ableism” was coined, Bogdan and Biklen published “Handicapism,” which defined the word as a “set of assumptions and practices that promote the differential and unequal treatment of people because of apparent or assumed physical, mental, or behavioral difference.”

“We hope that the handicapism paradigm will enable researchers and practitioners to begin to reassess their assumptions concerning segregated service, differential treatment, the real source of the disability problem, labeling and language patterns, and funding mechanisms tied to labeling,” Bogdan and Biklen wrote.

Like Blatt, both Taylor and Bogdan visited mental health institutions and were appalled by the conditions. Bogdan came to similar conclusions to Blatt, noting their awful sanitation and poor staff-to-patient ratios. They weren’t places that were helping people, Bogdan said, they were prisons.

Zubal-Ruggieri said Taylor was similarly affected.

“That just kind of changed his life,” Zubal-Ruggieri said. “‘How can I just study this and not do something about it?’ And that’s kind of what Blatt taught his students. You can’t just go in and study services, you’ve got to work on change.”

In one case, Bogdan said he and fellow activists were working with parents to put pressure on reforming a local state school for people with mental disabilities. According to Bogdan, an administrator heard about their work and called Blatt to put a stop to it.

“Do you know what your people are doing? You shouldn’t be doing that,” he remembers the administrator telling Blatt.

While Bogdan isn’t sure what Blatt said in response, he did say Blatt returned with the complaint. They promptly disregarded it.

Biklen said he first interacted with Blatt after hearing about a lecture he planned to give on human abuse and public policy. The lecture featured photos of the same conditions pictured in “Christmas in Purgatory.” After talking following the lecture, Blatt invited Biklen up to talk in his office.

Soon after, Blatt offered Biklen a research assistantship. The pair, according to Biklen, developed SU’s Center on Human Policy, which was founded in 1971.

Today, Biklen believes he’s largely known for two things: his early work in disability advocacy and facilitated communication, a largely discredited technique attempting to aid non-verbal people with developmental disabilities with communication. In FC, a “facilitator” provides physical support to the “user” so that they can point to what they’d like to type. However, decades of research have shown that it is the facilitator authoring the message, not the user.

Biklen popularized facilitated communication in the U.S. after learning of the technique in Australia in 1989, according to SU’s Inclusion and Communications (ICI). Just four years later, Biklen established the Facilitated Communication Institute, which exists today as ICI under SU’s School of Education.

While today the university mostly refers to the practice as “typing to communicate,” FC is still promoted through ICI both through workshops and readily available resources.

Blatt died around a decade before the start of the disability studies program, but he laid foundational research for the field and influenced three of the people who would shape the program. Bogdan is still attached to the university as a professor emeritus in the Maxwell School of Citizenship and Public Affairs. Biklen, who now lives in Australia, was the dean of the School of Education from 2006-14.

Taylor died on Nov. 8, 2014 at his home in South Onondaga. Not only did he help establish the disability studies program at SU, but he was also the Center for Human Policy’s director from 1983 to 2014. Zubal-Ruggieri said she and a collection of former students of Taylor’s are in the “draft stage” of writing a book on Taylor’s life and work.

Bogdan, Biklen and Taylor were all important figures in their respective aspects of disability studies and, for some who pursued disability studies at SU, part of the reason they came to the university.

Beth Ferri first joined SU in 2002, but said she identified as a disability studies scholar long before that. While at Teachers College at Columbia University, her floor department chair said the SU role would be perfect for Ferri, as if it was written for her. Ferri wasn’t in the job market, but she gave the position a look anyway.

“I knew the tradition at SU,” Ferri said. “I knew people like Steve Taylor, Doug Biklen, Bob Bogdan. These were sort of intellectual heroes of mine so I quickly decided, ‘Yes, I should apply.’”

Over the last decade, Christine Ashby, the director of ICI, said the field of disability studies has moved toward a better understanding of intersectionality and how other identities, such as race and gender, alter people’s lived experiences with disability. Over its half-century existence, most in the field agree that disability studies has been overwhelmingly white.

“And so thinking about recognizing that, how do we think about disabled students of color? How do we think about students who are multiple marginalized, and adults that are multiple marginalized?” Ashby said. “That’s been a big shift in the field.”

While the collective shift may be new, its presence at SU is not.

One of the earliest critiques of the field relating to race came from Chris Bell, who came to SU from Towson University after Taylor met him in 2006. That same year, he published “Introducing White Disability Studies: A Modest Proposal,” one part a sarcastic reflection on the field’s history and one part a scathing critique of its ongoing failure to properly engage with race. “White Disability Studies,” according to Bell, was a more accurate name for the field at the time.

Reviewing for Disability Studies Quarterly in 2012, Adam Newman wrote that Bell himself brought the intersection of race and disability into “widespread visibility” with the essay. Bell’s contributions to the field stand out even more because he was around 30 when it was published.

Bell, who was HIV-positive, died in 2009, three years after his field-disrupting piece. When he died, he was an ARRT fellow at the Center for Human Policy, Law and Disability Studies at SU.

“Chris is committed to social justice,” Taylor told The Daily Orange in 2008, a year before Bell’s death. “He recognizes the parallels between what people with disabilities have faced in society and the discrimination and marginalization members of other groups have experienced based on race, ethnicity, gender, and sexuality.”

The same year Bell took on the field of disability studies, Ferri released her first book, “Reading Resistance: Discourses of Exclusion in Desegregation and Inclusion Debates,” which she wrote with now-CUNY Professor Emeritus David Connor.

Bogdan and Biklen were attuned to the changes in the field of study they helped create. In a 2013 addendum to “Handicapism,” they wrote that, in retrospect, there were gaps in the piece, namely a lack of focus on the voice of people with disabilities, the political economy of disability services and the concept of double discrimination.

“We should have emphasized the especially intense, even magnified form of handicapism experienced by people who were the targets of racism,” the two wrote.

In 2024, the disability studies program takes two forms — a minor for undergraduates and a certificate of advanced study for graduate students. Looking ahead, School of Education Dean Kelly Chandler-Olcott said the school wants to attract more students to both the minor and CAS. At the same time, she said the school is interested in researching what a disability studies major would look like.

“We are really trying to think about sort of what disability studies 2.0 or even 3.0 in this contemporary moment,” Chandler-Olcott said, “and I think we’re much more aware of all of the ways, both positively and negatively, that disability sort of intersects with and amplifies other identities.”

Published on February 29, 2024 at 3:51 am

Contact Kyle: kschouin@syr.edu | @Kyle_Chouinard