Sunday, October 4, 2009

Disability Rights and the Assisted Suicide Movement.

Opposition to assisted suicide comes from many corners. For me, one of the most emotionally charged factions of opposition is that of the disabled who fear the "slippery slope" disintegration of our culture into a devaluation of those who are born with or develop physical and mental disabilities.

The disability rights movement, building on a California ruling in 1959 for independent living of those diagnosed with polio, blossomed in the 70s - alongside the "euthanasia" movement and the pro-life movement - rooting itself firmly in the civil rights and consumer movements. (The Rehabilitation Act that requires all organizations receiving federal funds to accommodate the disabled was passed in 1973 the same year Roe v Wade was passed.) Many disability rights groups have allied themselves with pro-life groups to contest the abortion of disabled fetuses even as they have worked for individual rights and choice.

Groups like Not Dead Yet, founded in 1996 in response to the assisted suicides of two disabled people by Dr. Jack Kevorkian and galvanized by the case of Terri Schiavo who was removed from nutrition and hydration by court order in 2005, have joined with other disability organizations to oppose the advance of state assisted suicide bills. When a guardian is given the right to remove a disabled person from life-sustaining medical services, as was the case with Terri Schiavo, the disabled community rightly feels threatened. When doctors can accurately predict down syndrome in fetuses, the disabled community finds discrimination in the choice of a mother to abort.

In a 2006 article regarding the Supreme Court's 6-3 decision on Oregon's Death with Dignity law and explaining why the disabled so fiercely oppose assisted suicide, RaggedEdge writes:

One might think that disability rights activists would be strong supporters of the "right to die" -- after all, the independent-living movement's core beliefs -- that people should be able to make their own choices and control their own lives -- seem to be exactly the beliefs that drive right-to-die advocates.

The problem, say disability rights activists, has to do with the society in which we find ourselves -- and society's attitudes.

Life with a disability is so devalued, society is so bigoted against the idea that life with a severe disability can have quality, that in such a climate the "right to die" becomes a "duty to die." Activists fear that people who become disabled will choose suicide over living with disability. They fear that people whose disabilities make them burdens on family members will be pressured -- subtly or not so subtly -- to end their lives.

The definition of "disabled," which includes such disparate physical and mental states as blindness, schizophrenia, down syndrome, paralization, and persistent vegetative state, only complicates the advocacy for disabled rights and its nexus with assisted suicide. As the above quote belies, the determined fight for independence and self-determination that the disabled have long fought seems to contradict the primary justification for the legalization of assisted suicide.

Yet once was the time when the blind feared that eye-corrective surgery would endanger their disability rights by making blindness an at least partially correctable state. The advancement of medical technology has proved a blessing and a curse for disability rights, altering how society views disabilities in a two-steps-forward-three-steps-back manner.

The assisted suicide movement, advance directives, and living wills have produced, over the past 30 to 40 years but most recently with the legalization of death with dignity in three US states and the push to reform health care, an anxiety among the disabled. They fear, even as their rights have been legally protected, that the public continues to devalue life with disability. When an advance directive can prevent a severely disabled person from being placed on life-sustaining medical support, they detect a devaluation of life with disability. Common is the person who expresses the wish to not live in a persistent vegetative state, as the nation's experience of the death of Terri Schiavo proved, or with other disabilities, seeing disability as a diminishment.

Certainly, there is a tone to discourse among the disabled that resembles what Barbara Ehrenreich characterizes in her definitive 2001 article on breast cancer, "Welcome To Cancerland," as glorification of victimhood, survivor status, and persevering through suffering. One can't fault a paraplegic for finding meaning in their disability, yet the prospect of becoming a paraplegic oneself has caused hundreds of thousands of Americans to sign advance directives. How we protect the rights of the disabled in some ways collides with our ability to experience empathy for their conditions. End of life choice and medical advancements brings that collision to the fore of social discourse.

Because the definition of disability is varies greatly, estimates of those in the world living with disability are difficult to make. The World Health Organization estimates that out of a world population of 6.5 billion, 100 million can be considered moderately or severely disabled. In the US, the disabled make up the third largest minority after Hispanics and African Americans.

How we as a society continue to value life with disability, to protect individual rights, and to address the medical industry's regard and treatment of quality of life and end of life issues will determine the level of protection and rights of those with disabilities. The nexus of the assisted suicide movement and disability rights is encumbered with so many other issues like depression treatment, suicide prevention, the pro-life cause, religious rights, and health care reform that it is hard to predict how either advocacy group will proceed.

New Hampshire continues the push for the legalization of assisted suicide with the committee work they are currently doing on a state bill. The challenge is to provide all citizens with rights to life and dignity in death. How we do so will demonstrate our advancement in human rights as a society.

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