Disability Rights Leadership Institute on Bioethics: Advancing the Disability Rights Perspective on Bioethics Issues

Months of work came to fruition on April 25 – 26, 2014 at the Crystal City Marriott in Arlington, VA.  Conference planning experts told us to expect a 10% no show rate, but out of our final count of 68 who signed up to attend (we had initially expected about 50), only 3 missed it.  That’s a clue about the amazing level of participation we had for the first ever Disability Rights Leadership Institute on Bioethics (DRLIB).

Before talking about the program, I first want to thank our sponsors:  National Disability Leadership Alliance, Autistic Self Advocacy Network, Disability Rights Education and Defense Fund, Euthanasia Prevention Coalition, National Council on Independent Living and, of course, Not Dead Yet.

All of DRLIB’s sponsors and participants also want to thank our generous supporters:  Aging With Dignity, Association of Programs for Rural Independent Living, Yoshiko Dart, Gail Ludwig and Clarissa Kripke, Michigan Disability Rights Coalition, Montanans Against Assisted Suicide, Patients’ Rights Action Fund and United Spinal.

I also want to thank the Center for Disability Rights for designing and printing our conference programs and sending their extraordinary executive administrative assistant Linda Taylor to manage our check in desk, and TRIPIL’s Kathleen Kleinmann, DREDF’s Rhonda Neuhaus and disability bioethicist Joe Stramondo for volunteering there too.

Friday was the focus for NDY and DREDF, addressing issues around assisted suicide and withholding and withdrawal of life-sustaining treatment.  I was the first presenter, on the latter subject, starting out with a dilemma:

I really feel that we need a lively opening and those of you who know me realize, as I do, that I’m a bit too wonky for that.  Throughout the Institute I’ll be turning to so many of you for help, so I want to start off with a brilliant piece by Norm Kunc.

Norm was there, and his “Euthanasia Blues” provided a rollicking start.

My wonky part was described this way in the program:  Medical discrimination against people with disabilities, sometimes resulting in death through the nonconsensual withholding of life sustaining treatment, has been a longstanding and increasing concern among disability advocates, especially under the threat of healthcare budget cuts and rationing. Over the last two decades, health care decisions laws have been amended to increase the likelihood that people will sign advance directives and POLST forms refusing life sustaining treatment, and that surrogate decision makers will refuse treatment on behalf of relatives without advance directives. There are also concerns about organ transplant professionals denying transplant eligibility based on disability, as well as pushing for withdrawal of life support from disabled people in order to harvest their organs for others. Most states have “futile care” laws and policies allowing physicians to withhold life-sustaining treatment over the expressed objection of the individual or their surrogate. Evidence of passive euthanasia in violation of the civil rights of people with disabilities, such as that described in the National Disability Rights Network report, “Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights” (May 2012), will be explored, as well as potential avenues for addressing these violations.

I showed a video of a bad POLST conversation between a doctor and patient.  The DRLIB audience readily discerned the doctor’s bias against life-sustaining treatment, but sadly he’s getting an award from the California POLST group for the quality of his work.  But my favorite part was passing on a community organizing idea from ADAPT’s Bob Kafka:  We should all try to get people with disabilities from our local advocacy groups appointed to hospital ethics committees.  It’s a “Nothing About Us Without Us” campaign, aka End the UNEthics Committees!

DREDF’s Marilyn Golden came next, talking about the disability rights opposition to legalization of assisted suicide.  She noted the disability community history with assisted suicide and the inherent disability discrimination found in assisted suicide proposals. Next, she discussed many public policy concerns with the legalization of assisted suicide, including how assisted suicide laws are a deadly mix with the broken, profit-driven US health care system; the significant risks of abuse; the inadequacy of safeguards; the lack of oversight; and how legal alternatives exist for people who are dying in pain.  Marilyn was also very astute in exploring the political landscape for assisted suicide laws in the US today, the importance of working in coalitions to defeat assisted suicide proposals, and the diverse nature of those coalitions.

What we learned during a later discussion is that she changed at least one attendee’s mind who now opposes legalization of assisted suicide.

Marilyn’s remarks were actually delivered in two parts, broken up by a delightful lunch and a wonderful keynote by Liz Carr, a disabled comedian, actor in a BBC drama series, and NDY activist from the United Kingdom.

Liz described her ‘hobby’ as “working with Not Dead Yet UK to fight against the further legalisation of assisted suicide.”  It would be impossible to capture how entertaining Liz was in the text of a blog, but just to give you an idea from her remarks:

I’m currently writing ‘Assisted Suicide – The Musical’.  This show is my response to the mainstream media onslaught of semi naked disabled people who are having their teeth brushed, their hair washed whilst usually hanging pitifully in a hoist as classical music plays in the background and a sombre voiced narrator tells the audience how awful their life is.  What’s the new term for this?  Expiration porn? Objectifying us for the titillation of the observer?   Making the viewer feel better about their life?  Perpetuating the already engrained view that people like that, people like me, people like us, would be better off dead.  I wrote Assisted Suicide The Musical in the belief that a witty showtune will do as much to counter that view as any op-ed. 

When we get the Power Points posted on the DRLIB website, you’ll be able to see some very funny slides with the dancing nurses and disabled person dangling awkwardly in a “hoist.”  But Liz had a lot more to discuss from her Euthanasia Road Trip, a BBC broadcast project that took her from the Netherlands to Oregon and beyond to explore the issues with people on both sides of the debate.  Her insights and passion were a tremendous contribution to DRLIB.

Later, we heard about International Perspectives in Europe and Canada on Assisted Suicide and Euthanasia.  Well traveled Canadian Nic Steenhout of Vivre dans la Dignité (Living with Dignity) discussed the situation in Europe, including developments in the Netherlands and Belgium where active euthanasia is legal.  Amy Hasbrouck of Toujours Vivant / Not Dead Yet Canada talked about disability advocacy to defeat proposals that would legalize assisted suicide and active euthanasia in Canada.  People with disabilities, including those whose conditions are no where near terminal, are openly targeted in these proposals.

After a long first day, we were then treated to a fascinating movie called “Fixed – The Science Fiction of Human Enhancement” by Regan Brashear.

Saturday’s presentations were led by the Autistic Self Advocacy Network.  The day opened with a tribute to renowned bioethicist Adrienne Asch, who recently passed away after an illustrious career, given by ASAN’s Ari Ne’eman, John Pare of the National Federation of the Blind and Marcy Darnovsky of the Center for Genetics and Society.

The day’s presentations focused on “beginning of life” issues.  Marcy Darnovsky and DREDF’s Sylvia Yee enlightened the group about Key Issues in Reproductive Technologies.  ASAN’s Director of Public Policy insightfully addressed the problems with “Wrongful Birth/Wrongful Life” lawsuits.

Both days included two concurrent discussion groups (four in total) led by experts who could have readily presented fully on the topics, but gave their time to facilitate valuable dialogue that elicited experiences, insights, ideas and strategies from all DRLIB participants.

• Advocacy & Media – Marilyn Golden, Ari Ne’eman and Diane Coleman
• Fighting the Bioethics War – William Peace (Syracuse University Jeannette Watson Distinguished Visiting Professor), Joseph Stramondo (PhD Candidate, Michigan State University), Marcy Darnovsky  (Center for Genetics and Society – CGS)
• Addressing Ethical Dilemmas Posed by Genetic Technologies – Ari Ne’eman and Samantha Crane
• Media and Violence Against People With Disabilities – Lawrence Carter-Long (National Council on Disability), Zoe Gross (Autistic Self-Advocacy Network – ASAN)

This led to more feedback and exchange, and ASAN’s Julia Bascom facilitated an excellent wrap up and next steps discussion.

We’ll be putting the Power Points and more on the DRLIB conference website in the near future.  Perhaps most importantly, everyone committed to further communication, expanded networking, and more DRLIB.