Twenty years ago, on April 27th, at a disability rights gathering in Dallas, Bob Kafka, one of the leaders of ADAPT, said to me, “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 our lives. 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 Carol Gill and myself, Not Dead Yet (NDY) began.
The struggle against assisted suicide was about to take a dramatic turn. On June 21, 1996, NDY activists held our 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 our 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,” and to declare before the court and the public at large that we were “Not Dead Yet.”
The presence of disabled activists at this fifth Kevorkian trial finally led 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 our 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, implementation of the Affordable Care Act, 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. We are now a “go to” source for media outlets looking for quotes on the issue of assisted suicide. We have cultivated and lived up to our reputation for the highest standards of integrity and intellectual rigor. We have distinguished ourselves and our positions from that of the faith community, and earned the grudging respect of our opponents. And we remain the articulate and principled voice of disability rights opposition to the legalization of medical killing.
Though Kevorkian is gone, we still have 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 our perspective on living well with disabilities. Time has already taken from us many invaluable members and allies along the way, yet those still here will continue as long as we are Not Dead Yet.
On this, the 20th anniversary of the founding of NDY, we’re asking you to join us in renewing our pledge to prevent the legalization of assisted suicide and euthanasia, through the courts, the legislatures, the ballot box, and public policy. There are many ways you can help.
Donate to NDY. Five bucks or five hundred bucks. We promise to steward it well and put it right back into the fight!
Pro Bono Attorneys. We have regular need for attorneys to help us file briefs, assist individuals whose life-sustaining care is threatened, and lend their smarts to other legal matters, and we would love to build up our network of supportive attorneys across the country. Let us know if you might be willing for us to call on you from time to time to see if you can help us out in your state!
Community Organizers. Whether it’s advocacy at the statehouse or a protest at an assisted suicide or bioethics conference, we’d love to hear from you if you’re willing to join us as a participant or organizer when the rubber meets the road!
Letters to the Editor. Has the assisted suicide fight come to your state in full swing? NDY’s got a great online toolkit to help you sound like the policy buff you really are on this topic and help give you fodder for writing a letter to the editor the next time your hometown paper touts the proposed bill’s virtues! (Be sure to write us and tell us if your letter is published!)
Coalition Support. Do you lead a nonprofit that would love to partner with NDY on activities related to issues like assisted suicide, “futile care” policies, surrogate healthcare decision-making, equal rights in organ donation, or just learn more about them?
Become an Online Foot Soldier. You already told us you love us, so like NDY on Facebook, subscribe to our blog, and follow us on Twitter to help signal boost our message to help us get the disability perspective out there on assisted suicide and other health care issues.
Send Us Your Stories. S/he who hath the best arguments does not always prevail. We have always felt we have the data on our side in our arguments, but that doesn’t always sway policymakers. We need stories to share that will drive our points home and give them a personal face. If you have a story (yourself, a loved one, friend or client) you think could benefit our advocacy, please send it our way!
Together we can build a society where the threat of assisted suicide and euthanasia no longer hang like a sword of Damocles over the heads of disabled people seeking medical assistance, and where disabled people have truly equal life choices.
Diane Coleman Anne Sommers
Founder, President and CEO Board Chair