Last week, we celebrated Ed Roberts Day by remembering how the “father of the independent living movement” helped change the world’s view of people with disabilities through his activism and community building. The beginnings of Roberts’ activism can be traced back to 1962, when, as a community college student, he persuaded UC Berkeley to accept him into its undergraduate political science program.
At the time, disability resources and civil rights laws were not available to support Deaf and disabled students; campuses and classrooms were not accessible. Roberts was paralyzed from the neck down and needed a ventilator and an iron lung to survive. But the dorms at UC Berkeley could not bear the weight of an 800-pound iron lung, so Roberts had to live at the student health center, Cowell Hospital. On enrolling, Roberts became the first severely disabled student at UC Berkeley.
The Rolling Quads: Building Disability Community and Pride
Despite the skeptics, Roberts used his success as a student to convince the university to accept more quadriplegic students into its academic degree programs. To make the campus accessible for them, Roberts needed to add campus activism and community building to self-advocacy in his leadership skill set. He reflected on the powerful relationship between self-advocacy and activism in the 1995 documentary series, People in Motion:
The most important part of [changing things for people with disabilities] is working with other people. Moving away from your own problems to help somebody else. And that liberated me when I realized I could help others. It made me a lot freer to help myself. (“Free Wheeling”)
By developing his activism and collaboration skills with other disabled students, Roberts felt more able to advocate for himself.
The new students with severe physical disabilities moved in with Roberts at Cowell Hospital, and together they became known as the Rolling Quads. They started the first disabled-student-led campus organization in the U.S., the Physically Disabled Students Program. The organization provided disability services, such as transportation and wheelchair repair, and pushed for the removal of physical barriers to campus access, such as street curbs and stairs. As Roberts remembered years later, the Rolling Quads quickly learned that successful campus activism would require them to confront their own internalized ableism and develop disability pride:
[The Rolling Quads] realized that we could change some things. [But] first we needed to change our own attitudes about ourselves. Be proud of who we were and what we were. And go out and change things for others and for ourselves. (“Free Wheeling”)
For many students with disabilities, college is an important time to meet other Deaf, disabled, and chronically ill students and develop a positive disability identity and support network. But many of us arrive on campus with no prior exposure to disability as a positive identity and as a community with its own history and culture.
The Rolling Quads demonstrated that developing a positive disability identity and community is a crucial step for activists and organizations to create campus change. Today, student-led disability organizations and disabled activists on college and university campuses across the U.S. are carrying on the legacy of the Rolling Quads. Not only are these students making campuses more accessible, increasing available disability resources, and fostering inclusion in the classroom and in campus life, they are also countering stigma and ableism by developing disability pride and community on their campuses.
In honor of Ed Roberts Day on January 23rd, we picked four examples of student-led activism from 2017 to illustrate many ways one can be a campus activist and leader in the tradition of Ed Roberts and the Rolling Quads.
The SDAC Develops Disability Identity with Disability 101
Like the members of the Rolling Quads, the members of the Students with Disabilities Advisory Council (SDAC) at Miami University in Ohio knew that students with disabilities needed to develop a positive disability identity before they could come together to create change on campus. When they first formed in 2016, the SDAC “recognized that we had to foster an environment where our members would feel comfortable and confident in their disability identities,” according to founding SDAC leader and DREAM Board member Megan Zahneis. “Creating [disability] community was the purpose of SDAC,” said Zahneis. “Once we established that rapport, we started thinking about ways to extend our reach to the rest of our campus.”
The founding members of the SDAC felt that the best way for students with disabilities to develop disability pride is to learn some of the core concepts of disability studies — such as different disability models, the negative representations of disability in the media, and the prevalence of ableism in society. Then, they could deliver these same core concepts to other people on campus so others could understand the issues of the disability community.
One of the SDAC’s first initiatives was to take what they learned from an Introduction to Disability Studies class to create the presentation slides for “Disability Studies 101: Changing Perceptions,” which are embedded below.
Zahneis reports that members of the SDAC often use these slides to deliver Disability 101 presentations to students, faculty and staff on campus. Our readers are free to use these slides to help produce similar presentations at their college or university.
Miami University recognized the SDAC as its Outstanding New Student Organization of 2017 for their initiatives — like the Disability 101 presentations — that helped create disability community and move the campus beyond just disability awareness. SDAC’s graduate student advisor, Dan Darkow, was named Graduate Advisor of the Year and now works as an accommodations coordinator and continues as the SDAC advisor. The SDAC built a strong disability community by developing and presenting the Disability 101 project together. This has enabled them to add new projects to increase accessibility and decrease ableism on campus, like their 14 Disability Microaggressions infographic and a pitch to advocate for a disability cultural center.
Power2Act Builds Relationships to Create a Disability Community Center
Power2Act at Stanford University (pictured below) is another student disability group that acted on the urgent need to develop and support disability community on their campus. Since 2014, Power2Act leadership has advocated for a disability cultural center where disabled students and their allies can socialize, study, find support, and hold events. Progress toward this goal increased when member Zina Jiwadi became co-president of Power2Act in early 2016. Jawadi understood that a visible, standing source of disability pride would help change attitudes towards disability on campus. “Physical space increases visibility and enhances discussion about topics and issues pertaining to our community,” Jawadi said in an early 2017 interview with student paper The Stanford Daily.
When Jawadi later became Disability Co-Lead in Stanford University’s student government, she continued to build relationships with disabled and non-disabled students, faculty, staff, administration, and other organizations to support a disability community center until it became a reality. As part of Stanford Disabilities Week in October 2017, Power2Act partnered with other student organizations to open a disability cultural center on campus, called the Abilities Hub.
From this place of community pride, Jawadi envisions the possibility for futher campus change:
“By having a physical space for the disability community, we are not only increasing visibility of disability at Stanford but are also emphasizing the role of the disability community and its advocacy initiatives at Stanford,”
Duke Disability Alliance Includes Online Activism in Its Bid to Create Campus Change
While colleges and universities in the 1960s frequently saw on-campus protests, campus activists these days work online as well as in physical spaces to fight ableism, gain equal access, and secure more resources. Rather than protests, disability awareness week has become a regular event on many college and university campuses. But these events are not often student-led and include harmful disability simulations that evoke pity and misunderstanding in non-disabled participants. Online, these ideas of disability as a medical condition to pity and cure, and as a source of inspiration to help able-bodied folks overcome challenges, are a regular part of students’ social media interactions.
Under the leadership of the Duke Disability Alliance, Duke University changed the name and the focus of its disability awareness week to Disability Pride Week in 2017. They reached out to students, faculty, administration, and other student organizations to put together a rich blend of on-campus and online activities that would move beyond awareness into acceptance and celebration of disability pride. Among the scheduled events were a student art exhibit and lecture, the #FightTheStigma social media campaign, a student roundtable on psychiatric drugs, individual pledges to use accessible routes on campus, and the NeuroDIVERSITY and Inclusion exhibition.
Subtitled “A creative approach to student activism,” the NeuroDiversity and Inclusion exhibition is a collaboration between Duke Disability Alliance and students in a Modernism and Madness course taught by Dr. Marion Quirici. The now entirely online exhibition of disability activism features student works in many different forms — podcasts, poems, petitions, stories, photography, art, articles, and more. The collective purpose of the exhibition is to “overturn the stigma of mental disability and psychiatric challenges, to celebrate neurodiversity, and to explore the infrastructures of inclusion and exclusion in modern American life.”
One exhibit is the Mad Studies podcast — “your podcast for breaking down stigma and bringing the voices of disability studies right to you” — created and hosted by undergraduate Winston Lindqwister. Although Lindqwister had no prior experience in video, audio, or captioning, he produced a series of nine lengthy interviews with prominent figures in mad and disabilities studies. These figures include disability rights attorney Shaun Neumeier, writer and activist Rachel Kallem Whitman, and an anonymous disability studies professor who withheld her name because of the stigma of mental illness at her university. A playlist of these interviews on YouTube is embedded below.
Many students at Duke University contributed to making Disability Pride Week 2017 a rich experience for everyone online as well as on campus. And many of the online elements of the event continue to be sites for changing attitudes about disability today.
The #LiveOn Project at the University of Illinois, Urbana-Champaign
As Linqwister’s podcast shows, not all campus activism needs to be limited to a physical campus; social media can be used to support students with disabilities on campus and online. And not all great campus activism is done through or with a student disability organization. For example, as part of Suicide Awareness Month in September 2017, Squeaky Wheelchair blogger, disability activist, and graduate student Kathleen Downes brought the #LiveOn Project to her campus at the University of Illinois, Urbana-Champaign. The #LiveOn Project is a disability-led anti-suicide campaign of New York’s Center for Disability Rights in which people with physical disabilities encourage others with disabilities to live on.
Downes, who is from New York, made a video for the project in early 2017, which is embedded below.
In the video, Downes shares her own sense of disability pride that Ed Roberts said was crucial for successful activism: “Living with a disability has brought me experiences both joyful and challenging. All of these experiences make me who I am today and I am proud.” Downes was so moved by her participation in the #LiveOn Project that she decided to bring it to her campus as a letter writing campaign:
“When I heard about the LiveOn campaign, I thought, ‘That’s awesome. That’s something I want to be a part of.’ We live in a society that is in so many ways discouraging to us . . . It’s important to remind others with disabilities that we can have a good life, in spite of and because of our disabilities,”
Downes used her social media influence to gather letters from all over the country, as well as her on-campus influence to gather letters from other students who have physical disabilities and struggle with mental health. She displayed the letters on a bulletin board at the University Housing office, where she was an intern with the Social Justice and Leadership Education group. In addition, the letters were posted to social media with the hashtag #LiveOn. In this way, Downes powerfully blended her on-campus and online activism to support people with disabilities and to change attitudes about their challenges.
Inclusive Leadership for Social Change
Ed Roberts and the Rolling Quads learned quickly that disability pride and working with others were key ingredients to successful campus activism. This understanding has also been a key to success in the four examples of student-led disability activism described above. The legacy of Ed Roberts and the Rolling Quads is not simply increased access to classrooms and college life or the legal protections from discrimination on the basis of disability granted by Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act. They also showed us that successful campus activism needs a solid foundation of disability pride and community to rise.
Campus activism emerges today in a variety of forms — forms that reflect the diversity of students with disabilities who develop them. By welcoming all our different perspectives and strengths to campus activism and student leadership, our collective ability to create change is strengthened. And as Ed said,
“We’re going to develop leadership that has a fundamental difference. That is, it’s inclusive. It believes in people, in our strengths together. And we are going to change our society” (Ed Roberts: His Words, His Vision).
This is the legacy and promise of Ed Roberts and the Rolling Quads.