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Saturday, December 19, 2009

I'm an artichoke: Empowering people with serious disabilities

Dr. David Spiegel's story on Ed Roberts:
Ed Roberts, was transformed in 48 hours from star high school baseball player to permanent quadriplegic on a respirator by the polio virus. He has come to lead a remarkably independent and full life despite this, rising to become the head of the World Institute of Disability in Berkeley, California. After several years of deep despair, with his mother’s help, he applied to the Department of Rehabilitation of the State of California for entrance into its training program. He was rejected, with the comment hat he was "unrehabilitatable." He went to school anyway, gained considerable experience, and 2 years later became the commissioner of the same department! He is an energetic, outgoing man, who seems to project himself beyond his wheelchair, attendant, and breathing apparatus. He took steps to see that the disabled had control over those who helped them – making them, rather than the state, the primary employers. And he rails against the exclusion the disabled feel. (He hates the term "handicapped" – it comes from being "cap in hand.") Looking up at a roomful of bright young Stanford medical students, he said: "I think of you as temporarily able bodied." By mobilizing the disabled to share and work together, he was able to redefine the world of the able-bodied, and change it. "The doctors told my mother that I would be a vegetable," Ed commented. This was quite a mistake – the poliomyelitis virus attacks motor neurons, not the part of the brain that thinks. "But it turns out they were right – I am. I'm an artichoke: prickly on the outside, with a big heart in the middle."

Ed's transformation from a socially isolated, depressed, despairing young man who had lost "everything" into an effective, vital man who boasts about the quality of his life despite his serious disability, came in part through his contact with other people with disabilities. Through them he learned that he did not deserve what had happened to him, that he was not less of a person for it, that he could find other ways to rebuild his life. This resulted not from denying nor hiding from his disability, but rather from making it the starting point of new relationships and a new perspective on life. People with life-threatening illness do the same thing every day, and many more could, if they stopped suffering in silence.

Advice: Live like Ed.

Read another story about a disabled athlete.

Thanks to Dr. David Spiegel for the source – the book "Living Beyond Limits."

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