Disabled Rights Activist Advocates for Aid-in-Dying
This is an excerpt of a speech delivered at the three campuses of the University of Alaska.
I am a severely disabled man. At the age of 19, I contracted polio, which left me paralyzed from the chest down. I have used a wheelchair ever since. As a founding member of the disability rights movement, I authored what became the Architectural Barriers Act of 1968 in Alaska -- to my knowledge, the first legislation to acknowledge the civil rights of disabled people ever passed, anywhere. I have been active in the movement throughout my adult life.
I am also a member of the National Board of Compassion in Dying (CID), an organization that seeks to ensure that patients, as they approach the end of life, retain control over their bodies and their lives -- their personal autonomy -- until the end. CID holds that a person at the end stage of terminal disease has a moral right to compassion, counseling, hospice care, full and adequate pain medication, and, should this be his/her considered desire, physician assistance in obtaining the medication necessary to control the manner and means of his dying.
As an elderly disabled man, I see my disabled friends dying as disease overtakes their worn out bodies. It is my own firm conviction that persons with disabilities have much wisdom and insight to inject into the public debate over end of life care and physician assistance in dying. We know -- as able-bodied people do not -- that "quality of life" bears no relation to bedpans and wheelchairs. It is not about losing your ability to play tennis or go to the bathroom by yourself. It is bigger than that: quality of life is found in self worth, personal autonomy, the love of oneself and others.
I believe that every human being has a God-given right to control what is to be done -- or not done -- to his or her body. This right to choose extends from birth to death, across the entire span of life. Friends, family, physicians, clergy, society have a right to educate and counsel the person on alternatives and outcomes, but the decision itself belongs to the individual involved. "Nothing about me, without me," is the slogan of ADAPT, the disability activist group. This personal autonomy, the very basis of disability rights, most surely does not diminish at the end of life.
The moral issue assisted dying presents can be stated in two ways: Should the suffering patient have the right to end life when recovery is impossible. Or, Should the physician have the authority to end such a life if so requested.
Whether you approach assisted dying the first way or the second way directly influences how you see the issue. I see it the first way, as a matter of patients' rights. As a disabled person who has fought for my civil rights I see assisted dying as a matter of personal autonomy. I make the decisions. While I do not believe that I would ever make use of assisted dying, I believe it would be a comfort and support, knowing that it is available.
There is some evidence to indicate that most disabled people feel this way. A Harris Poll, taken in 1995, reported that 66 percent of disabled Americans support the option of assisted suicide for persons in severe pain in the terminal stage of disease. This support is six percent stronger than that of Americans as a whole. Fewer than 20 percent of disabled people oppose physician-assisted dying.
The promise of individual liberty and personal autonomy as spelled out in the Declaration of Independence and the Bill of Rights has been repeatedly ratified and affirmed over the last generation by the courts, the Congress and the state legislatures. People with disabilities now hold these rights of citizenship equally and irrevocably -- as do all American citizens, able-bodied and disabled alike. Disabled people have the right, as they exercise and demand the right, to control their bodies, their lives and their destinies. I for one, treasure this liberty above all things and I do not intend to let it go as I pass through the end stage of my life on earth.
Dr. Gallagher is a well-known scholar, writer and disability rights activist. A person with polio quadriplegia since 1952, Dr. Gallagher has fought for the civil rights of disabled people for almost 40 years. Dr. Gallagher is also one the world's foremost experts on the atrocities committed against people with disabilities by the Nazi regime. A prolific writer and commentator on a variety of topics, Dr. Gallagher most recently has concentrated on issues of medical ethics as they relate to disability.
Back to the Compassion in Dying Spring 2001 contents page.
This article was provided by Compassion in Dying. It is a part of the publication Compassion in Dying.