Dear Friends: We write to you because we believe certain persons and organizations who claim to speak for persons with disabilities may have seriously misrepresented the views of many of us.
Public attention in recent years has focused on issues surrounding end-of-life care. We believe this is all to the good. Death, like birth, is part of the life process, neither to be feared nor denied. In truth, the end of life can be a time of expressing and sharing love, forgiveness and thankfulness. We believe end-of-life choices are a private matter. Interest groups, legislators, judges, and publicity-seekers have no business interfering with the decision-making autonomy of the dying patient.
We wish to make clear that we do not support the practices of Jack Kevorkian any more than we support the objectives of those who would deny us the right to control our lives, either during the prime or at the end.
People with disabilities know all too well what it is like to lose personal autonomy -- this is what the fight for self-determination and disability rights is all about. We do not think that people with disabilities, who have struggled for many years to have control over their own lives and bodies, would or should give up this decision-making autonomy at the end of life.
If you agree with us, please write to us at:
Cabin John, MD 20818
or you may email us at HGG@dgsys.com
A DECLARATION OF DISABILITY RIGHTS
WE BELIEVE the disability rights movement is based fundamentally on the autonomy and self-determination of people with disabilities, and that individuals with disabilities should be allowed to control all aspects of their lives;
WE BELIEVE people with disabilities, including individuals with terminal illnesses, should have access to adequate health care services, and should not be discriminated against in gaining such access;
WE BELIEVE informed consent must be obtained before any health care practitioner may provide treatment, and the patient must always have the right to refuse treatment, including refusal of extraordinary efforts to sustain his or her life;
WE BELIEVE medical treatment must never be denied or withdrawn solely because a patient has a disability, and may only be denied or withdrawn as a result of the express desire of the individual (or someone appropriately authorized to decide on the individual's behalf);
WE BELIEVE an individual's "quality of life" can only be judged by that individual (or by a person assigned by that individual in the event that he or she becomes incompetent), and others such as physicians and hospital administrators have no moral authority to make such judgments;
WE BELIEVE persons in the final stage of a terminal disease should have access to hospice care, as well as access to as much pain medication as they need for comfort.
WE BELIEVE persons with disabilities in the end stage of terminal stage determined to end their lives should have access to competent counseling on the issue.
WE BELIEVE people with disabilities - being of sound mind, in pain at the end stage of terminal disease - who are determined to take their lives should have access to the medication and assistance necessary to achieve their objectives.
For more info write to:
Hugh Gregory Gallagher
Cabin John, MD 20818
or email HGG@dgsys.com.
Hugh Gregory Gallagher is the author of several excellent books on disability history, including FDR's Splendid Deception and By Trust Betrayed. Hugh is post-polio and lives in Maryland.
Drew Batavia served in the Bush White House and was Legislative Assistant for Sen. McCain. He is now a law professor in Miami. He is quadriplegic and has written extensively on disability issues.