On September 29, 1993, Robert Wendland, then age 42, was involved in a vehicle accident. He was in a coma for 16 months. In January 1995, Mr. Wendland came out of the coma, but he remains severely cognitively impaired. He is paralyzed on the right side. He communicates using a “Yes/No” communication board. He receives food and fluids through a feeding tube.
During rehabilitation, he has been able to do such activities as grasp and release a ball, operate an electric wheelchair with a joystick, move himself in a manual wheelchair with his left hand or foot, balance himself momentarily in a “standing frame” while grabbing and pulling “thera-putty,” draw the letter “R,” and choose and replace requested color blocks out of several color choices. The Probate Court appointed Robert Wendland’s wife, Rose, as conservator of his person under the Probate Code.
Rose sought authorization from the court to remove the feeding tube, thereby starving him to death. Robert’s mother (Florence Wendland) and sister (Rebekah Vinson) objected. Various groups opposed to active euthanasia became involved in the case with amicus briefs: Not Dead Yet is a national grassroots organization of people with disabilities formed in response to the increasing popularity of, and laws permitting, physician assisted suicide and euthanasia in the United States and around the world.
Not Dead Yet’s mission is to advocate against legalization of physician assisted suicide and euthanasia, and to bring a disability-rights perspective and awareness of the effects of discrimination to the legal and sociological debate around euthanasia and physician assisted suicide. Formed in 1996 in Illinois, Not Dead Yet has worked to educate, support, coordinate and lead the disability community’s effort to stop the “right to die” from becoming a duty to die or a right to kill.
While it is impossible to determine how many people with disabilities, family members and allies, call themselves members of Not Dead Yet, members have undertaken specific activities in the name of the organization and in support of its mission in at least 30 states. Not Dead Yet has given invited testimony before the U. S. Congress three times, once before the U. S. Senate Judiciary Committee and twice before the Constitution Subcommittee of the U. S. House of Representatives.
When Not Dead Yet members attended the long awaited 1999 trial of Jack Kevorkian (the first after three years of non-prosecution, and scores of assisted suicides of people with non-terminal disabilities) and silently demanded the equal protection of the law, he was convicted. In contrast to the extensive paid staff, legal and lobbying resources available to the pro-euthanasia movement in the U. S. , and their affiliates worldwide, Not Dead Yet has one paid staff member.
With members who also work on the front lines of the class struggle for access to health care and home and community based long-term care services, almost all of Not Dead Yet’s activities are the work of volunteers. ADAPT and SELF-ADVOCATES BECOMING EMPOWERED are two national organizations, most of whose members have severe disabilities and many of whom have been institutionalized in nursing facilities and other public institutions solely because they have disabilities .
ADAPT members include persons with spina bifida, cerebral palsy, muscular dystrophy, spinal cord injuries, multiple sclerosis, quadriplegia, paraplegia, head and brain injuries, polio, amyotrophic lateral sclerosis, as well as many other disabilities. Most of these persons use assistive devices, including motorized and manual wheelchairs, ventilators, and personal assistance services for meeting their personal needs. SABE’S members are people with cognitive disabilities who support each other and live in integrated community settings.
Both organizations’ national mission is to establish the civil rights of all individuals to choose to live in their homes and communities, rather than be forced into nursing homes and other institutional settings. Both have a long history and record of enforcing the civil rights of people with disabilities and was one of the key organizations that participated in the political and legislative process that resulted in the passage in 1990 of the Americans with Disabilities Act, 42 U. S. C. Sec. 12101 et seq. (“ADA”). See ADAPT v. Skinner, U. S. Dep’t of Transp. 67 F. 2d 1471, 881 F. 2d 1184 (3d Cir. 1989).
THE ARC OF THE UNITED STATES(The Arc), through its nearly 1,000 state and local chapters, is the largest national voluntary organization in the United States devoted solely to the welfare of the more than seven million children and adults with retardation and their families. Since its inception, The Arc has vigorously challenged attitudes and public policy, based on false stereotypes, which have authorized or encouraged discrimination against people with mental retardation in virtually all areas of life.
The Arc was one of the leaders in framing and supporting passage of the Americans with Disabilities Act (ADA). The Arc has extensive experience in addressing issues regarding withholding of medical treatment and has found that people with retardation sometimes die because doctors, parents and other decision-makers impose do-not-resuscitate orders or refuse to authorize medical treatment or provide food and/or water. These decisions are often based on the disability itself, on the perceived “poor quality of life” of the individual, or for economic reasons, rather than on the individual’s medical condition.
The Arc was instrumental in development of the so-called Baby Doe amendments to the Child Abuse Amendments of 1984, which protect newborns with disabilities. In addition, in 1983, in collaboration with other national organizations, The Arc developed the “Principles of Treatment of Disabled Infants. ” The Arc’s position statement on medical and dental treatment states, in part, that “a person’s mental retardation or degree of disability must not be a factor in the decision to provide or withhold medical or dental treatment.
Withholding or withdrawing treatment based on disability alone is illegal and can never be condoned. The individual’s medical condition and welfare must be the basis of the decision. ” BRAIN INJURY ASSOCIATION, INC. is a national non-profit organization whose mission is to create a better future through brain injury prevention, research, education and advocacy. The Association has 43 affiliates in 43 states.
There are 5. 3 million people with brain injuries causing permanent effects in the U. S. , and there are an estimated 2 million sustaining some form of brain injury each year. The Association values and respects the dignity and worth of all people in a true spirit of inclusion. The Association believes that people with brain injury should have opportunities to be full participating members of their community. The Association promotes progressive public policy and responds to issues with integrity and courage.
CENTER FOR SELF-DETERMINATION is a national organization comprised of individuals with disabilities, family members and professionals committed to the principles of self-determination: freedom to choose where one wants to live and with whom, as well as what important things one will do with one’s life; authority and control over the dollars necessary for long term supports; support to craft the supports needed in ways that are unique to the individual with a disability; and responsibility for both the wise use of public dollars and for contributing to one’s community.
The Center is committed to supporting new leadership at the local, state and national level among individuals with disabilities (especially those with cognitive disabilities), family members and allies in the pursuit of changing the system of long term care to reflect the freedoms lost to individuals currently served by this system.
The Center also provides training and technical assistance on systems-change issues, including Medicaid, the use of fiscal intermediaries, the design of personal budgets and the creation of alternatives to traditional notions of guardianship. The Center’s view is that paternalistic notions of “incompetence” need to be replaced by a new ethical and legal foundation that promotes “assisted competence. ”
CENTER ON HUMAN POLICY is an interdisciplinary disability research and policy institute at Syracuse University. Established in 1971, the Center’s work focuses on people with cognitive disabilities. The Center’s research has included studies of institutions, schools, and community services, the history of the treatment of people with disabilities in America, disability law and policy, images of disability in the media and popular culture, and the politics and ethics of various treatment options.
The Center is aware of the historical pattern of discrimination against people with disabilities in Western societies. Adults and children with disabilities, and especially those with cognitive disabilities, have been subjected to segregation, school exclusion, involuntary sterilization, restrictions on marriage, denial of medical care, unethical medical experimentation, and, in extreme cases, euthanasia.
The Center opposes withholding life sustaining treatment, nutrition and hydration, and routine medical care from any individual without that individual’s explicit and informed consent. Further, although the Center respects the role that family members can play in assisting and supporting persons with cognitive disabilities, the Center is aware that family members have not always acted in the best interests of such persons in life and death matters.
THE DISABILITY RIGHTS CENTER(DRC), based in Washington, D. C, is a not-for-profit organization that was founded in 1978. Its mission is to enable people with disabilities to improve the quality of their lives, determine their own lifestyles, participate in all aspects of society, secure their human and civil rights, meet their responsibilities as citizens and to provide a mechanism for consumer control and policy direction of the systems that impact upon their lives.
The notion of each person with a disability’s choice about and control over his/her life is essential in securing civil and human rights. It is ten years after the passage of the Americans with Disabilities Act. The Board of Directors and staff of DRC firmly believe that for any court to decide that a surrogate has the power to decide to remove food, water and medical and rehabilitative treatment from a person with a disability is contrary to self-determination and choice and shows a devalued stereotype of people with disabilities.
People with disabilities have civil rights that can be compared to those of African-Americans and women. The court should be no more inclined to award a relative or surrogate the right to deny food, water and medical rehabilitation and thereby life to a person with a disability than it would allow the non-voluntary killing of any other minority member. NATIONAL COUNCIL ON INDEPENDENT LIVING(NCIL) is the oldest cross-disability, grassroots organization run by and for people with disabilities.
Founded in 1982, NCIL represents over 700 organizations and individuals including: Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), individuals with disabilities, and other organizations that advocate for the human and civil rights of people with disabilities throughout the United States. NCIL promotes a national advocacy agenda set by its membership. NCIL also provides its membership, Congress, Federal agencies and the general public with educational materials related to national disability polices and laws.
The independent living philosophy holds that individuals with disabilities have the right to live with dignity and appropriate supports in their own homes, to participate in their communities, and to control and make decisions about their lives, regardless of the degree of disability. NCIL firmly believes that no surrogate, guardian, or family member should be empowered to make decisions for a person with a disability without full protection of the individual’s fundamental and civil rights. This principle is all the more crucial when it applies to life and death.
NATIONAL SPINAL CORD INJURY ASSOCIATION, INC. NSCIA”) is the largest civilian organization in the United States dedicated to improving the quality of life of persons with spinal cord injury and disease. The NSCIA has established a network of over 40 chapters and support groups nationwide for people with spinal cord injuries and disease (“SCI/D”), their families, and the professionals involved with their care. It also operates a national toll-free hotline which fields thousands of inquiries each year from newly injured individuals and others, promotes peer counseling groups, and maintains the largest and most current resource center on spinal cord injury and disease in the world.
The NSCIA’s formal mission is “to enable people with SCI/D to make choices and take actions to achieve their highest level of independence and personal fulfillment. ” The organization has a unique knowledge of, and experience with, many of the core is sues involved in this case. Spinal cord injury is regarded by some as constituting one of the most debilitating and tragic of human conditions. Cases of extreme spinal cord injury, have been cited as illustrating the type of impairment which may warrant or support a desire to hasten death.
The NSCIA believes that the option of expediting death should never be considered an attractive public policy for society at large or for members of the disability community in particular. Instead, the more laudable goal is to improve health care services, treat and manage pain more aggressively, and provide individuals with more resources and support, so that death is never regarded by them or their representatives as necessary or desirable.
Owing to its purpose and mission, the NSCIA promotes all reasonable efforts to improve the quality of life for all persons, regardless of their health and abilities. The NSCIA opposes all attempts to promote or secure the “benefit” of a right to die or kill. TASH is an international association of people with disabilities, their family members, other advocates, and professionals fighting for a society in which inclusion of all people in all aspects of society is the norm, with over thirty chapters and members from thirty-four different countries and territories.
Since its inception over twenty-three years ago, TASH has worked as a civil rights organization for, and of, people with mental retardation, autism, cerebral palsy, physical disabilities and other conditions that make full integration a challenge. A major issue to which we devote ongoing effort, is the abolishment of the use of aversive procedures—electric shock, water sprays, forced inhalation of ammonia and ingestion of pepper sauce, and pinching and hitting—to control the behavior of children and adults with disabilities.
People with disabilities, by virtue of their disability, are often unable to speak out against abuses that would not be tolerated if they were imposed on the elderly, school children, prisoners, or even animals. They have provided testimony and legislative advocacy concerning the right of medically fragile newborns to life-sustaining support and medical treatment.