By Lana Nieves, Development & Communications Director at the Independent Living Resource Center San Francisco (ILRCSF)
In short, Ed Roberts was the father of the Independent Living Movement. His story is an important one, because it speaks to:
• An individual’s ability to make a huge difference in the world
• How many of us take simple things for granted
• The fact that disability is a normal part of the world we live in
Edward Verne Roberts was born on January 23, 1939. At the height of the polio epidemic in the United States, and before Jonas Salk developed the vaccine that ended the epidemic, Ed Roberts contracted polio. He was 14 years old. The disease left him paralyzed from the neck down (except for some movement in two fingers and a couple of toes) and compromised his ability to breathe on his own, making it necessary for him to sleep in an iron lung.
During the earliest days of his paralysis, Ed Roberts attended school via telephone hook-up. His mother, however, insisted he spend time in an actual classroom, and encouraged him to assert himself and lobby for his rights at school. With her support and encouragement, he moved away from thinking of himself as “helpless” and “crippled.” Spurred on by his mother’s positive attitude, and refusal to see his talents and intelligence go to waste, Ed Roberts seems to have been destined for a life of advocacy and social change. By the time a high school administrator threatened to deny him a HS diploma because he had not completed driver’s ed and gym, Ed was more than ready to make his voice heard and fight for his rights. He successfully won the right to graduate, went on to attend the College of San Mateo and, eventually, UC Berkeley, where he had to fight to be taken seriously as a student with a bright future.
On learning that Roberts had a severe disability, one of the UC Berkeley deans famously commented, “We’ve tried cripples before and it didn’t work.” It would be shocking to hear such a thing today. When Ed Roberts first arrived at Berkeley, it was all too common.
Most of us hear “Berkeley” and think of the Summer of Love, Vietnam protests and sit-ins. Ed Roberts arrived at Berkeley in 1962, a full two years before the campus became a hotbed of student protest. In many ways, Roberts’ fight to gain access to the same services every other student was entitled to set the scene for larger-scale civil rights actions at Berkeley. When his search for housing proved difficult due to the 800-pound iron lung that he slept in at night, the director of the campus health service offered him a room in an empty wing of the Cowell Hospital. Robert’s accepted on one condition: that the area where he lived be treated as dormitory space and not a medical facility. This action changed everything for students with severe physical disabilities. Over the next few years, several others joined him at what evolved into the Cowell Residence Program.
Over time, the group at Cowell began calling themselves the “Rolling Quads,” and a full-fledged movement was under way. Among their achievements:
• The successful ousting of a rehabilitation counselor who set out to limit both their access to housing and their rights as adults
• Curb cuts throughout campus
• The development of the Physically Disabled Student’s Program (PDSP), the first student-led disability services program in the country
It was not long before The Rolling Quads recognized that changes at Berkeley would not be enough: that people with disabilities needed to advocate for their rights throughout the wider community. It was then that the Berkeley Center for Independent Living (CIL), the first independent living service and advocacy program run by and for people with disabilities, was founded. While Ed Roberts was not the founder of CIL, or even the first Executive Director, he did eventually become the organization’s leader. It was under his leadership that the IL movement really took off and spread nationwide.
In 1976, Governor Jerry Brown appointed Ed Roberts Director of the California Department of Vocational Rehabilitation, the same agency that had once labeled him too severely disabled to work. In 1983, he returned to the city of Berkeley where he co-founded the World Institute on Disability with Judy Heumann and Joan Leon.
Ed Roberts died in 1995. We remember him on January 23, his birthday, as we remember other people who have made a real difference in the world.
Reprinted with permission from the Independent Living Resource Center San Francisco (ILRCSF). Click here to view the original posting.
