There are many news sources for this, but here’s the news from UCBerkeley News giving a short account of the life of Ed Roberts and the legislative action that created an “Ed Roberts Day.” Here are the first two paragraphs from Wendy Edelstein’s “Ed Roberts, disability-rights leader and Cal alum, gets his own state day“:
BERKELEY — January 23 has been named Ed Roberts Day in California, in honor of the Cal alum who pioneered the disability-rights movement on campus and nationwide.
Roberts, who was the first Berkeley student to rely on a wheelchair when he arrived in 1962, is recognized as the father of the independent living movement for people with disabilities and special needs. He died in 1995.
There is also a comprehensive biography of Roberts on Wikipedia – a good starting point for anyone who wants to know more about the man.
Ed Roberts died a year before Not Dead Yet was formed. But that doesn’t mean he was silent about the issues that Not Dead Yet cares about. The person regarded as the father of the independent living movement saw a lot to be angry about in the court cases during the 1980s involving disabled people being enthusiastically supported by lawyers, the press, the public and even the courts in their wish to die.
In 1990, Mary Johnson interviewed Ed Roberts regarding the parade of “right to die” cases involving disabled people wanting to die – most of them male quadriplegics using ventilators.
The Ragged Edge Magazine, published and edited by Mary Johnson, is no longer in circulation, but much of its material is available online (see linked title at start of sentence).
In the article “Unanswered Questions,” Johnson analyzed the dynamics of the “right to die” case of Kenneth Bergstedt. Bergstedt was 31 and had been a quadriplegic and vent user for about 20 years. He was suing for the right to die by disconnection of his vent because his life was “no longer worth living.”
Johnson described how Las Vegas Sun articles by reporter Jeff German consistently painted the life of someone with quadriplegia – Bergstedt in particular – as a fate worse than death.
The unquestioned (by the press and the public, anyway) impetus for Bergstedt’s wish to die was the impending death of his terminally-ill father, who was his sole caregiver. Both Bergstedts feared Kenneth would end up in an institution.
This is a long and thoughtful article exploring and attempting to understand breaking developments of the time – and I strongly recommend it to anyone who wants to understand these “right to die” cases.
For right now, though, let me share her account of her discussion with Ed Roberts:
“The whole thing is outrageous,” said Roberts now. He’d just learned about the Bergstedt case himself. “I am getting angrier and angrier about these cases. They feed on each other. The attorneys, the courts, the judges, they don’t know anything. They see somebody like Bergstedt, they say, ‘of course he wants to die!’
“What’s happening is we’re killing disabled people in this country and then act like we’re doing them a favor. It’s outrageous!” I thought back to German’s columns and thought that Roberts had expressed my thoughts better than I had.
“I’ve been on a respirator for 26 years,” the MacArthur “genius” fellowship award winner continued, “and I watch these people’s cases — they’re just as dependent on a respirator as I am; the major difference is they know they’re going to be forced to live in a nursing home — or they’re already there — and I’m leading a quality life.
“That’s the only difference. It’s not the respirator. It’s money.”
Not once did “money” appear in any of German’s writings on the case.
What Roberts, Johnson and others in the disability rights movement saw at the time are some of the same core issues we continue to deal with now. But today’s post is about Ed Roberts.
If anyone – and it happens sometimes – claims that opposition to assisted suicide runs counter to the independent living philosophy, remember the words of Ed Roberts and share them. –Stephen Drake