Yesterday would have been Ed Roberts’s 84th birthday. Ed Roberts helped launch the independent living movement. Millions of lives have been impacted by his work, including mine.
Roberts went down a path that changed the course of history after contracting polio at age 14. The virus left him paralyzed from the neck down and reliant on a ventilator.
Poliomyelitis, usually known as polio, is an infection caused by a virus (poliovirus). Polio primarily affects children under age 5. It can cause muscle weakness, lifelong disability, and even death. Clinical manifestations range from mild respiratory illness, gastroenteritis, and malaise to severe paralysis. These are classified as inapparent infection with no symptoms, moderate disease (abortive poliomyelitis), aseptic meningitis (nonparalytic poliomyelitis), and paralytic poliomyelitis.
Although Roberts excelled in his high school academics, he was denied graduation because he had not completed his physical education or driver’s education requirements. Roberts prevailed, as he would throughout his life. He then chose to study public policy at UC Berkeley. Despite being told that his education would be futile, he became the first student with severe disabilities to be admitted.
Roberts also denounced oppressive policies that discouraged disabled people from taking charge of their own lives and segregated them in different homes and schools. While earning his BA and MA, Roberts helped develop the Physically Disabled Students Program, America’s first student-led disability services program. He was also instrumental in establishing the first Center for Independent Living, which served as a model for hundreds of similar agencies around the country.
Centers for Independent Living are non-profit community-based organizations developed and run by disabled people. They strive to ensure that disabled individuals can live independently in the community of their choosing, with the necessary services and support.
CILs are unique in that they operate under a rigorous consumer control principle, with people with all forms of disabilities directly governing and staffing the organization. Centers for Independent Living offer peer support, information, and referral, advocacy, independent living skills training, and help during times of transition. In the U.S. today, there are 403 Centers for Independent Living (CILs), 330 branch offices, and 56 Statewide Independent Living Councils.
Governor Edmund G. Brown, Jr. named Roberts as Director of the California Department of Vocational Rehabilitation in 1976. The same agency had declared him too disabled to work at all years earlier. There, Roberts altered policy to provide resources to those with severe disabilities, which became a federal rehabilitation policy.
In 1983, he co-founded the World Institute on Disability (WID). Using funding from his MacArthur Foundation fellowship, Roberts began spreading the concept of independent living worldwide. He was the president of WID until he died in 1995.
Without people like Ed Roberts, the lives of people like me would look much different. I am forever grateful to Ed Roberts and all of the other disabled people who fought for me and others. Because of their efforts, accessibility is now a part of everyday life, inclusion is a priority, and the voices of disabled people are becoming more and more powerful.
Sources:
“About Independent Living.” National Council on Independent Living, National Council on Independent Living, 30 May 2019, https://ncil.org/about/aboutil/.
“Centers for Independent Living.” Mass.gov, The Commonwealth of Massachusetts , https://www.mass.gov/info-details/centers-for-independent-living.
“Ed Roberts.” The California Museum, The California Museum, 15 Feb. 2012, https://www.californiamuseum.org/inductee/ed-roberts.
Mehndiratta, Man Mohan et al. “Poliomyelitis: historical facts, epidemiology, and current challenges in eradication.” The Neurohospitalist vol. 4,4 (2014): 223-9. doi:10.1177/1941874414533352
Leon, Joan. ‘Ed Roberts’. Encyclopedia Britannica, 19 Jan. 2023, https://www.britannica.com/biography/Ed-Roberts.
Walter, Kristin, and Preeti N. Malani. ‘What Is Polio?’ JAMA, vol. 328, no. 16, Oct. 2022, pp. 1652–1652, https://doi.org10.1001/jama.2022.17159.