From Amber Smock
Dear Access Living friends and allies,
On Monday, we celebrated the vision and dreams of the civil rights leader Dr. Martin Luther King, Jr. Today, we at Access Living ask you to consider the legacy of an equally important civil rights leader---Ed Roberts, the man known as the “Father of Independent Living.” Ed LIVED the dream of the disability rights movement; today would have been his 74th birthday. Here is a link to a short film about Ed: http://www.youtube.com/watch?v=ci3ek-tqiGQ.
As I watched this film recently, it is profoundly clear to me that certain things were non-negotiable for Ed. Self-determination. Consumer control. Peer support. Ed lived as a post-polio survivor with quadriplegia, but he absolutely shredded every social stigma and medical label people tried to apply to him. Society, even now in 2013, would have labeled Ed as “high risk” and assigned him to a nursing facility for the rest of his life. However, Ed chose to combat the enormous social stigma that he faced, the overriding urge to medicalize his life and shut down his potential. He went on to co-found the first Center for Independent Living in Berkeley, with programs designed to be run by people with disabilities, for people with disabilities, so no one would ever have to be institutionalized again if he could help it. He taught us that no lesson lasts longer for a person with a disability than that taught by a fellow person with a disability. Today, there are hundreds of CILs in the US and around the world because of Ed’s efforts.
Ed on stigma: “I’ve had people come up to me and say I’d rather be dead than be like you. And they miss so much because life is such a joy.”
Ed on independent living: “Independent living is a psychological idea much more than a physical concept. I’m paralyzed from the neck down, but I’m completely in control of my own life. I make decisions about what I want. And when you begin to believe that, it’s very empowering and powerful. And then it catches on with other people. They say, well if he can do that, why can’t I?”
Ed on pride and peer support: “We realized that we could change some things. First we needed to change our own attitudes about ourselves. Be proud of who we were and go out and change it for others and for ourselves.”
Ed on self-determination: “We didn’t want to live in an institution. I remember a dean at the university said, “Oh, you’ll finish your Ph.D and then you’ll live in a nursing home.” I said, no, that’s not the plan. We’re here to change that whole idea.”
As we look back on the lessons he taught us about self-determination, consumer control, and the power of peer support, we do so in a climate of challenging times. As President Obama said on Monday: "The commitments we make to each other – through Medicare, and Medicaid, and Social Security – these things do not sap our initiative; they strengthen us. They do not make us a nation of takers; they free us to take the risks that make this country great." State-funded programs that empower people with disabilities to live in this community also help give us that freedom.
Tomorrow, the State of Illinois is convening a town hall meeting on Medicaid managed care long term care services---the very type of services that Centers for Independent Living have helped to build. Remember, we took on the coordination of personal attendant services starting back in 1982. We began transitioning people out of nursing facilities and into the community in 1998. And we are the ones who fought for the idea that Money Follows the Person should be basically a program to empower people with disabilities by having their Medicaid dollars follow them into the community. The Money Follows the Person coordinators were to be themselves peers with disabilities. In the spirit of Ed Roberts, it is important to keep peer-run programs and concepts such as these as options for people with disabilities who want to live in the community.
The Medicaid Managed Care Town Hall Meeting is from 12 to 3 pm, Thursday January 24, at the auditorium at the James R. Thompson Center at 100 W. Randolph in Chicago. The link for registration is at http://www2.illinois.gov/hfs/PublicInvolvement/IntegratedCareProgram/Pages/Webinar.aspx. Please register, hear the state’s rollout plan, and provide your input. Ask yourself, as you listen: are we remaining true to the principles on which our movement was formed? To the spirit of Ed Roberts? Access Living and other disability organizations will be there. We hope you’ll join us to remind them that there should be NOTHING ABOUT US WITHOUT US.
Your voice needs to be heard by the State of Illinois, now more than ever. Please watch Ed's film, and reflect.
Director of Advocacy, Access Living