According to the definitions of "terminal illness" used in the model statutes proposed by right-to-die advocates and applied in several court rulings upholding that "right," I am terminally ill, and I have been for the past forty-three years.I have a physical disability. As a result of childhood polio, my arms are paralyzed, my spine is curved, and I use a ventilator as much as eighteen hours a day. I am experiencing the late effects of polio common in many of us who contracted the disease. I get fatigued much sooner than I used to and have much greater chronic pain.
I employ aides to work in my home to do housekeeping, cooking and shopping and to assist me with personal needs. The university pays for typists to transcribe my research notes from audiotapes and for student assistants to fetch books from the library, to help me organize teaching materials, and to do filing in my office.
I am an Associate Professor of History at San Francisco State University, where I specialize in Early American History and the History of the Disability Minorities in America. I have written both academic and popular articles about the history of people with disabilities, cultural representations of disability in motion pictures and television, our current civil-rights struggle, and assisted suicide as it affects disabled people. I have been involved in disability-rights activism since 1977 and in disability studies since 1983. The latter is an effort to make "disability" a subject of serious scholarly research and teaching based upon a new minority-group or sociopolitical perspective rather than the medical model.
Yet for most of my adult life, I was a prisoner of public social-welfare policies. Those policies did enable me to live independently. If I had resided in most states other than California, I would have been forced into a nursing home. But those same policies also blocked my efforts to pursue a career as a historian and college teacher. Provisions euphemistically labeled as "work disincentives" actually threatened to punish me if I got a job and earned an income. Productive paid work would have disqualified me from federal Medicaid, the health insurance that pays for my ventilator (around $12,000 a year), and from California's In-Home Support Services program, that pays for my domestic aides ($15,000 a year). Yet I knew I could not earn enough in an academic job to cover those expenses. Nor would private insurers cover most of it.
I was liberated from the thrall of that "crippling" system by the successful lobbying of disability-rights activists. Over the objections of the Social Security Administration, they persuaded Congress in 1988 to eliminate some of the most restrictive work penalties.
At last in 1990 at the age of 44, I was able to secure my first full-time teaching job, a visiting professorship in the History Department at Stanford University. Two years later I was hired by San Francisco State University as their specialist in American Colonial History. And three years after that, I was granted tenure and promotion to Associate Professor.
I tell you all this not to brag about my accomplishments but to make the point that the only reason I got this far was because of the achievements of the disability-rights movement. No matter how hard I worked, I could not have succeeded without the removal of work penalties through the activism of our community.
Nor do I tell you all of this to boast about my tenacity and perseverance. That is the sort of individualistic claptrap usually fed to disabled people. It keeps us believing that if our lives are limited, it is the because of our disabilities or our lack of pluck. The fact is that in 1989, one year before I went to teach at Stanford, I descended into an emotional blackhole. I despaired of ever achieving my dreams. I gave up on the whole idea of becoming a teacher.
Two events in the summer of 1989 drove me into that despair, the death of David Rivlin, which I reported on in the statement you received, and the legal bid for doctor-assisted suicide by another disabled man, Larry McAfee of Georgia. Like Rivlin, McAfee was a ventilator-using, spinal-cord injured quadriplegic. And like Rivlin, he was forced into a series of nursing homes -- and even spent eight months in the intensive-care unit of an Atlanta hospital -- because the State of Georgia refused to fund independent living at all. He told Joe Shapiro of U.S. News and World Report that the worst thing about his disabillity was that people treated him as though he was "invisible." He told ABC's Nightline: "If you're a citizen or resident of Georgia and you become ventilator-dependent, you'd better be prepared to become an outcast unwanted by the state." His mother said that he was "thrown around like a bag of rotten potatoes that nobody even wants." "You're looked upon as a second-rate citizen," McAfee told Shapiro. "People say, 'You're using my taxes. You don't deserve to be here. You should hurry up and leave.'" "It gets to the point," he said, "where you realize that this is your life, . . . and in my case, it's not worth pursuing."
But McAfee's attorney asserted that "he's made a rational decision that he just doesn't want to exist this way," as a quadriplegic. Judge Edward Johnson, ruling in favor of McAfee's request for doctor-assisted suicide, expressed admiration for his "courage." Dr. John D. Banja, assistant professor of rehabiltation medicine and lecturer in medical ethics at Emory University School of Medicine, declared to the court: "We acknowledge an individual's right to autonomy, self-determination and liberty as part of our ethical vision in this country."
This is the sort of "autonomy, self-determination and liberty" society willingly accords people with disabilities: the freedom to choose death. And then it applauds our "courage" and "rationality," all the while ignoring how society itself has battered us and made our lives unbearable.
Four Atlanta disability rights groups, led by Mark Johnson and Eleanor Smith, issued a press statement condemning Georgia's Attorney General and others who supported McAfee's petition for assisted suicide. They declared themselves "outraged that our state for years left Larry McAfee without enough support for independent living and now steps in willingly to help with his suicide....The state creates an unbearable quality of life and then steps in and says disabled people should be assisted to die because their quality of life is so poor."
Fortunately, Larry McAfee changed his mind about dying because people from United Cerebral Palsy offered him creative possibilities to regain control of his life and to work in computer engineering. In the end, he testified before the Georgia state legislature, calling upon them to fund independent living.
But that came months later. In the summer of 1989, Larry McAfee won court and public approval for his bid to die and David Rivlin was assisted to die.
And it hit me that I could easily have been in their place. At that point, I was still being denied the right to work, and I would have been denied the right to self-determined independent living if I had lived in Georgia or Michigan. I could very well have found my life unendurable. I could have been the one to say, "I would rather be dead." And many people, many civil- liberties lawyers and compassionate judges and humane doctors, would willingly have helped me die. They would have lamented how hard my life had been because of my disability. They would have admired my "courage" in "choosing" death. And they would have congratulated themselves for upholding the "ethical vision in this country" that individuals have a "right to autonomy, self-determination and liberty."
One thing saved me from that fate: the disability-rights movement. Our movement won my right to live independently, to work productively, to gain access to public places, to receive reasonable accommodations, and to obtain protection from discrimination. Our movement gave me the gift of a nurturing community. It offered me a positive, disability-affirming identity. It taught me pride.
They're singing those ol' Kevorkian Blues.
Mary Jane Owen and Not Dead Yet meet a furious parrot.
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