Ed Roberts: Self-Advocacy Pioneer & Father of the Independent Living Movement
If one had mentioned the name Ed Roberts to me many years ago, I’d probably have no clue who he was, and I’m probably not alone. It wasn’t until many years into my career within the disability community that I began to understand the profound impact his life has had, not only on me, but, on many others with a disability.
Roberts’ life and experiences are the definition and model of self-advocacy. He is known as The Father of the Independent Living Movement. The independent living philosophy and movement emphasizes consumer control. When it comes to persons with disabilities, consumer control involves the idea that people with disabilities are the best experts on their own needs; have crucial and valuable perspectives to contribute; and deserve equal opportunity to decide how to live, work, and take part in their communities, particularly in reference to services that powerfully affect their day-to-day lives and access to independence. Roberts helped open the first Center for Independent Living (CIL) where people go today to receive employment services, learn about available housing options, and make other decisions for their lives as they see fit.
One of the most interesting and educational experiences I’ve had was being able to attend a National Council on Independent Living (NCIL) conference. They’re held each July in Washington, D.C. At one point during the conference, we walked to the Capitol, essentially stopping traffic as we went. Personally, I had never been a part of a march of this magnitude, much less something about an issue that hit so close to home. Sure enough, there was an empty wheelchair being pushed by someone marching to signify the presence of Ed Roberts, just another example that his influence will always be felt within their organization.
Ed Roberts contracted Polio at age 14 and almost didn’t graduate from high school. Because of his mother’s efforts to advocate for her son’s education, the required driver’s education and physical education classes he couldn’t complete under the requirements at the time were waived, allowing him to graduate. While studying at the University of California at Berkeley, he was instrumental in creating the “Rolling Quads,” a group of students who used part of the infirmary as a dorm. At that time, requirements for accessible campus housing for students with disabilities didn’t exist. Because of his efforts with other students that lived in his dorm, Roberts also had a hand in creating the first students with disabilities services office.
He also advocated for things that are now commonplace. Curb cuts are just one example of something people take for granted that make a significant difference for those with various limitations. His efforts in advocacy for people with disabilities didn’t end after he graduated from college. Many years later, he became the Director of the California Department of Vocational Rehabilitation and later co-founded and served as President of the World Institute on Disability. In these positions, Roberts emphasized the power a person with a disability has through their vote and how to use the tools available to effect change in the political arena. He believed in the importance of being politically involved and properly informed on relevant issues to address ones specific needs. Early in the movement, he knew politicians were instrumental to making the necessary changes on a
Legislative level, resulting in a lasting, long-term impact.
The issues Roberts fought for have immense relevancy to effective self-advocacy. Prior to his activism, programs and services existed to assist people with disabilities in different aspects of their lives. However, no one was interested in involving the person in the decision-making process or seeking their input. He introduced the idea of the components that are essential to maximize the quality of life for people with disabilities, no matter what their limitations.
Roberts was a trailblazer during a time when many people thought of people with disabilities as being destined for institutions. His impact on the community and society lead to pivotal shifts in the minds of many about the life experiences people with disabilities might have. He single-handedly took back control for people with disabilities and started to show us how to be valued members of society that could make worthwhile contributions. Even though he passed away in 1995, his memory is still very much alive. We must follow the lead of Ed Roberts’ example and neither let the limitations our bodies place on us, nor allow the limitations society thinks we should have, stop us from living the lives we want to live.