Ever since I discovered the independent living movement, Ed Roberts has been one of my heroes. For those unfamiliar with Ed Roberts, he was the determined man with quadriplegia due to post-polio syndrome who, back in the 1960s, successfully advocated for his right to attend the University of California at Berkeley even after the administration told him that “[W]e tried cripples and it didn’t work” (Shapiro, 1994).
He was the student who tired of living under the strict rules of the campus hospital where the university housed him when he insisted on his right to enroll. Roberts then found ways for himself and other students with physical disabilities to fully participate in campus life as nondisabled students did (Levy, 1988).
He was the advocate who used his personal experience to start the first collegiate Disabled Students Program in the nation (United Spinal Association, 2015), which morphed into a community “independent living center” to empower others with disabilities to live in the community at a time when institutional life for people with severe disabilities was the norm. This center spawned a movement and a network of independent living centers in over 600 communities across the nation that continues to grow internationally (e.g., Barnes, 2016; Hayashi & Okuhira, 2008).
He was the leader who became director of the California state rehabilitation agency, after his vocational rehabilitation counselor advised him that he was unemployable (Shapiro, 1994).
He was the visionary who, with others, founded the World Institute on Disability to advance independent living and disability rights worldwide and who won a MacArthur Genius award for this work (World Institute on Disability, n.d.).
I was impressed with Roberts’ refusal to assume the “victim” role, after being referred to as a “polio victim” by talk show host Larry King (Goldfarb, 1995). His realization that gaining an education would be the key to his independence and freedom (Shapiro, 1994) made a big impression on me at a time when I was struggling to find my own identity as a person with a disability. I understood his life as a grand statement that people with disabilities should be granted accommodations in their academic programs and in the workplace, so that they can be fully participating and contributing members of society.
My admiration of Roberts, and my own experiences of negotiating academia with a disability, have led me to serve as campus advisor for the University of Kansas campus group to raise awareness of disability issues, AbleHawks and Allies. Through this group, I have been honored to work closely with many students, disabled and nondisabled, who are committed to improving the campus climate for students with disabilities, and to creating a more accessible society for all.
However, as more and more students with disabilities arrive on campus, which I attribute to the combined successes of the Individuals with Disabilities Education Act (IDEA) and the independent living and disability rights movements, I reflect on the barriers that many of these current students face. They are different and more complex than those that Roberts faced. His disability was very tangible, as evidenced by his physical paralysis which resulted in his use of a power wheelchair and portable ventilator. The types of accommodations that Roberts needed were quite clear, in terms of accessibility of the built environment and support from note takers, for example.
Yet, many current postsecondary students with disabilities experience conditions that are much less visible, and that make their need for accommodations less evident but still critical. Members, including leaders of AbleHawks and Allies, have experienced a variety of hidden disabilities such as learning disabilities, autism, traumatic brain injuries, psychiatric/mental health disabilities, and juvenile rheumatoid arthritis. These students’ needed accommodations are often more individualized than a building ramp or providing a note taker. Accommodations that may include the need to withdraw from settings due to overstimulation, the need for support to organize schedules and activities, or the need to interrupt one’s studies due to medication changes may be less likely to be understood as vital to their academic success and well-being.
Still, their achievement and, very likely, their future employment success depends, to some degree, on obtaining accommodations to level their playing fields. My hope is that these students are able to achieve the same degree of support and accommodation that Ed Roberts was able to obtain, and that academia affords these students the same opportunities that those with more visible disabilities have received.
“Everyone has a future”–Ed Roberts declared this as a basic tenet of the independent living movement (Research and Training Center on Independent Living, 2006). As we celebrate and preserve his legacy, I ponder how we can all work to assure that postsecondary students with any type of disability receive the accommodations needed to assure their present and future success? It is a charge that we owe the man who refused to accept the limitations that others placed on him. Thanks, Ed.
Barnes, C. (2016). Independent living, politics, and policy in the United Kingdom: A social model account. Review of Disability Studies: An International Journal, (1)4.
Fleischer, D.Z., & Zames, F. (2001). The Disability Rights Movement: From Charity to Confrontation. Philadelphia: Temple University Press.
Goldfarb, L. (1995). Free Wheeling – People in Motion: Ways to Move. Princeton, NJ: Films for the Humanities and Science. Retrieved from http://mn.gov/mnddc/ed-roberts/freeWheeling.html
Hayashi, R & Okuhira, M. (2008). The independent living movement in Asia: Solidarity from Japan. Disability & Society, 5, 417-429.
Levy, C. (1988). A people’s history of the independent living movement. Lawrence, KS: Research and Training Center on Independent Living Center, University of Kansas.
Research and Training Center on Independent Living. (2006). Ed Roberts: His Words, His Vision. Lawrence, KS: Research and Training Center on Independent Living, University of Kansas.
Shapiro, J.P. (1994). No Pity: People with disabilities forging a new civil rights movement. New York: Three Rivers Press.
United Spinal Association. (2015). Ed Roberts: Disability Rights Advocate with Polio. Retrieved from http://www.spinalcord.org/resource-center/askus/index.php?pg=kb.page&id=2600
World Institute on Disability. (n.d.). Meet Our Founders. Retrieved from https://wid.org/about/founders/
Dot Nary received her doctorate in developmental and child psychology from the University of Kansas, and is an assistant research professor at the Research and Training Center on Independent Living at KU. Prior to pursuing graduate studies, she worked at several centers for independent living in upstate New York and was active in promoting passage of the Americans with Disabilities Act. Her research interests focus on community participation, home visitability, access to recreation, health promotion and advocacy training for people with disabilities, and on creating accessible communities for all. She has been active in the Disability Section of the American Public Health Association, serves as staff advisor to AbleHawks & Allies, the KU student group that works to increase disability awareness on campus,and has taught courses on disability and social change at several universities.