Today Not Dead Yet Celebrates 20 Years in the Fight for Our Lives

Not Dead Yet, the ResistanceFor Immediate Release:
April 27, 2016

Diane Coleman  708-420-0539

Today Not Dead Yet Celebrates 20 Years in the Fight for Our Lives

Twenty years ago, on April 27, 1996, at a disability rights gathering in Dallas, Bob Kafka, one of the leaders of the national disability group ADAPT, said to Diane Coleman, “I’ve got a name for your group.” For years, ADAPT had been supportive of disability advocacy to challenge the assisted suicide movement and other deadly forms of medical discrimination. With the increasing popularity of “Dr. Death” Jack Kevorkian, whose body count was mainly people with disabilities who were not terminally ill, there had been growing talk of a street action group like ADAPT to address this critical threat to the lives of people with disabilities. So, from a running gag in the movie Monty Python and the Holy Grail, Bob suggested “Not Dead Yet.” On that day, as over 40 disability rights leaders from across the country signed onto Congressional Subcommittee testimony co-authored by Coleman and Dr. Carol Gill, Not Dead Yet (NDY) began.

The struggle against assisted suicide was about to take a dramatic turn.  On June 21, 1996, NDY activists held its first direct action, picketing outside the Michigan cottage where Kevorkian was known to stay. The AP newswire carried a photo of the protest, the first media notice of disability opposition. Three years later, when Jack Kevorkian was finally back in a Michigan courtroom, on trial for one of his self-confessed assisted killings, disabled activists appeared for the first time to call for the equal protection of the law, to demand that the court and jury “Jail Jack.”

The presence of disabled activists at this fifth Kevorkian trial helped lead to a murder conviction, and announced to the world the movement of disabled people against the legalization of assisted suicide and euthanasia.

Supported by a 1997 position statement by the National Council on Disability, a Resolution adopted by the membership of the National Council on Independent Living, and positions taken by many major disability rights groups, Not Dead Yet continued the struggle against assisted suicide, euthanasia, and other discriminatory ending-of-life practices into the new millennium. According to the Patients’ Rights Council, more than 175 assisted suicide legislative proposals in more than 35 states were defeated between 1994 and 2015; only four such laws have passed.NDY has built a network of activists throughout the country that has responded, over and over again, to educate legislators about the dangerous public policy of state-sanctioned selective killing.

In addition to direct action tactics, Not Dead Yet has continued using the full array of advocacy strategies, including filing friend-of-the-court briefs in over ten cases, two with the U.S. Supreme Court. In addition to briefs arguing against a constitutional right to assisted suicide, NDY has filed briefs in support of efforts to protect people with disabilities from involuntary withholding of life sustaining medical treatment by guardians or health providers, and in support of regulations protecting the right of disabled newborns to medical treatment.

Though less high profile, NDY’s more traditional efforts to influence public policy are an important part of its work as well. By submitting detailed public comments on proposed governmental and quasi-governmental policies, NDY has opposed disability discrimination in protocols for procuring donated organs, physician orders on life-sustaining treatment, best practice guidelines in adult protective services, advance care planning and related educational materials, and much more.

NDY has made a lot of progress in 20 years. NDY has distinguished itself and its positions from that of the faith community, and earned the grudging respect of its opponents. NDY remains the articulate and principled voice of disability rights opposition to the legalization of medical killing.

Though Kevorkian is gone, NDY still has to contend with death-advocates like Peter Singer and the mainstream bioethicists who agree with him, with the well-funded PR campaigns of assisted suicide advocates, and a never ending stream of public policy initiatives that need NDY’s perspective on living well with disabilities.

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Phone: 708-420-0539