Nearly a year after Ed Roberts died, two events occurred in one week that helped me to learn a new lesson from him.
Ed was the founder of the Disability and Independent Living Movement. He was stricken with polio in his mid-teens and spent the rest of his life in an iron lung. He left the iron lung most days, over a period of forty years, to use a battery-operated breathing pump and an electrified wheelchair controlled with the few functional fingers of his left hand.
Ed and his mother, Zona, persuaded the University of California to admit him as a student, and he earned both a bachelor's and a master's degree. In his spare time, he organized the first house and center for independent living, just off the Berkeley campus. A few years later, Ed was appointed the California Director of Rehabilitation under Governor Jerry Brown, and later he founded the World Institute on Disability.
Ed was a friend and associate of mine. I first met him when he was one of the leaders of a disability sit-in in a San Francisco federal office building, fighting for implementation of an existing federal law. We knew each other socially for many years after that, but I got to know him well when I was hired as a management consultant for the World Institute on Disability.
The year after Ed died, I was listening to a radio program in my car and heard an American disability spokesperson berating the Chinese government for its inadequate services for the disabled. The argument was based on the rights of disabled people to have reasonable access to public facilities. It saddened me. Who was this spokesperson speaking to? What was the moral authority of an American to admonish a three-thousand-year old society on the basis of "rights"?
At the end of the week, I was attending a sex education conference with a friend, and we listened to a woman in a wheelchair berating the medical and helping professions for inadequate attention to the disabled. My friend was offended, I was further saddened. Twenty years earlier I had attended the same conference and been emotionally moved by a man without legs who told what wonderful sex he had had once an understanding sex worker had taught him everything he needed to know to stimulate his lover. I was moved by this personal story of redemption by a person I had learned to care for after just a few minutes of listening. Now, I was sad due to encountering berating and attacking in the name of disability rights.
The issue of rights is a complex subject, deeply rooted in our long-tortured European history and our most precious religious and political values. It is not simple, and it doesn't derive from Congress passing a law. Rights derive from moral authority of a society. In the human-disability realm, we don't have rights to eyeglasses, to minimal dental prosthetics, or to hearing aids. The right to have the same complement of physical faculties as the average person has not been established.
Disability-related federal legislation has been created by extending the federal powers of interstate commerce, specifically in the realm of transportation access and employment discrimination. Laws and rights are not the same thing. In America's two-hundred-year history, many laws have been removed from the books and some reversed, while many ostensible rights have been obliterated. The right to own slaves, to carry guns, and to establish restrictive covenants in property sales have had their legislative ups and downs, as have cigarette-smoking privileges. There appear to be few stable rights in these categories.
The notion of disability rights is a prescription for disaster. At the moment I write this, our legal system is struggling with the "right" of a truck driver to drive with extreme corrective lenses. The case could just as easily involve a commercial airplane pilot, but the issue will end just as badly: Any resolution of this type of problem will engender anger and mutual antagonism. Most citizens value their own safety over another persons right to a job. This is a dead-end cause for the disability movement.
Why has the disability and independent living movement come as far as it has? Why was Ed Roberts so successful in creating the level of participation we have today for the people in the disability community?
Ed spoke slowly, and especially for the first few minutes of listening to him, he was hard to understand because he had an air tube in his mouth, which he shifted around with his tongue. He also moved his head often, and reoriented his electric wheelchair erratically to deal with his physical discomfort. In a silent video, he would have looked like a bumblebee dancing.
When Ed talked to you, however, he spoke directly to your heart. Everyone listened, fully enraptured. He used a language that was deep; he had a heart that was clear and true, and the intent in his heart was communicated directly to the person he was talking to. He reached deeply into the most human, caring part of other people. Ed was incredible on a person-to-person basis, and he was also impressive in a public-speaking mode. When Ed spoke to you, you knew that you needed Ed to be part of your life. If there were other people like Ed, with disabilities, you knew that they had to be part of your life, too.
It is impossible for me to fully communicate the power of Ed Roberts to evoke humanity and caring in the people he dealt with, though I saw him do this time and time again. I don't know the source of this power. Ed could meet someone for the first time, and within minutes that person wanted to support Ed and his project with everything they had.
The consequence is that the Disability and Independent Living Movement has shaped our lives and our values, from curb cuts to restrooms, to the advocacy of lawyers on the Senate floor. The movement has grown to this day without creating the horrific opposition that some other contemporary movements have created.
The civil rights movement, the women's movement and the gay rights movements arose from ferocious battles and opened gaping wounds that have continued to exist over decades. Opponents of these rights movements have never disappeared, and they are diminishing in vigor very slowly. Ed's movement, by contrast, grew with great acceptance and appreciation, and virtually no opposition, during his lifetime .
When Ed became Director of Rehabilitation in California, the blind and deaf received the lion's share of the state funds. Within a year, the deaf and the blind were receiving the minority of the funds and their community leaders were supporting Ed. They supported him because he convinced them of the merits of his cause. It was his personal ability to talk directly to their hearts, that changed the funding forever. The California Legislature supported Ed in its budgeting and has ever since.
I believe that the absence of an organized opposition to the disability movement was due to building the movement on the base of the emotional and moral qualities of Ed Roberts. Ed did not argue from an abstract belief in rights; he didn't argue at all, for that matter. He was strong and forceful, as strong as a person with a breathing tube and no mobility can be, but it wasn't a traditional kind of strength. Ed spoke heart to heart, to the core of each person's humanity. I believe that is why he was as effective as he was.
This should be a lesson for all of us and for future leaders of social and political movements. Very few people have the depth and heart that Ed had, but some do and they should used it to lead. Unfortunately, today the disability movement is calling itself a rights movement. I believe this will generate forceful opposition and end the progress that has been made so far.
I hope that a good biographer, like Taylor Branch, will come along and write Ed's biography in a way that lets people see what was so different about the movement that he founded. I hope that future activists can learn the lesson that Ed Roberts brought to the world: a great movement can be built by one person speaking from great depth directly to the humanity in everyone else.