A Brief History of Not Dead Yet

My first involvement as a disability activist in issues that could be described as related to assisted suicide concerned the case of Elizabeth Bouvia.  I was an attorney in Los Angeles in 1985 and volunteered as a member of the Board of a large center for independent living.

The center’s Executive Director contacted me about the case, explaining that Elizabeth Bouvia was a 26-year-old woman with cerebral palsy who had been through a miscarriage, marriage break up and other setbacks in her personal life, including the state rehabilitation agency taking back her accessible van and effectively blocking her plans to attend a master’s degree program.  She had gone to a local hospital, asking to be allowed to starve herself to death while receiving comfort care and pain medication.  The hospital refused to go along but admitted her.

She’d then contacted the Southern California ACLU, and they arranged for a Hemlock Society lawyer to take her so called “right to die” case.

I was asked to join in a disability rights picket at the ACLU’s LA office.  As a card carrying member of the ACLU at the time, I was understandably shocked.  Miscarriage, marriage break up – if Ms. Bouvia had been non-disabled, she would have gotten help to get through those setbacks.  The discrimination was obvious to disability activists, but not to the ACLU, the media, or the general public.

Fortunately, Ms. Bouvia’s so called “right to die” by refusing food and water was new legal territory back then so it took a couple years to get through the courts.  The California appellate court ultimately compared Ms. Bouvia, not to a suicidal person needing suicide prevention, but to a terminally ill person in a “helpless,” “hopeless” condition, granting her the right to starve herself in a hospital setting while receiving morphine and comfort care … but by then she didn’t go through with it.  Her supposedly firm and settled decision to die had changed after all, just as with most suicidal people.

Bioethicists keep telling the Elizabeth Bouvia story, but they usually leave out the key facts of her life and the blatant discrimination in the way she was treated compared to a nondisabled young woman facing similar setbacks.  This case served as a wake up call to the disability community.

Also in the 1980’s, several cases went through the courts involving young men with quadriplegia on ventilators.  These men were stuck in nursing facilities against their will, or feared winding up in a facility as their support systems failed, and sought the right to turn off the ventilator.  Some of them very directly said that they wanted to get out of the facility or else pull the plug.

In case after case, the courts painstakingly analyzed how the usual state interests in preserving life and preventing suicide did not apply to these men, while never once questioning their involuntary confinement in nursing facilities.  In each case, the court found that their liberty rights included the liberty to die but apparently not the right to live free.

In only one case, that of Larry McAfee, were disability advocates able to intervene and help him get out of the facility.  Bioethicists write about the case, but leave out the fight for his freedom and what made it happen, which was the ADAPT disability rights activists in Atlanta headed up by Mark Johnson, a man who’s quadriplegic and works at the Shepherd Spinal Center.  And they don’t mention Mr. McAfee’s later testimony before the state legislature about how he was treated like a second class citizen, shuttled from one nursing facility to another, including out of state facilities for Medicaid policy reasons.

We call these the “give me liberty or give me death” cases.  They appeared throughout the 1980’s and disability activists presented a critical analysis in every available venue of how these men were devalued and mistreated.  While we don’t oppose the right to refuse treatment based on informed consent, we question the coercive pressures placed on these men and others.

Disability groups object to the implicit claim that any of us need to die to have dignity. Needing help in dressing, bathing and other intimate daily tasks does not rob a person of autonomy and dignity. Unfortunately, popular culture has done virtually nothing to educate the public about how people with severe disabilities actually live autonomous and dignified lives. Our lives are portrayed as tragedies or sensationalized as heroism, but the real life issues and coping styles that most people will need if they live long enough are left out of the picture. No wonder people who acquire disabilities so often see death as the only viable solution.

This has led to plenty of distortion and criticism of the disability activist position.  But in October 2004, so many years later, one of the bioethicists who was active in the case of David Rivlin, Dr. Howard Brody, wrote a belated apology in the Lansing City Pulse:

“This is the key lesson that disabilities advocates are trying to teach the rest of us. If we look at a case one way, it seems that the problem is the person’s physical disability. If we shift our view, we realize that the problem is not the disability, but rather the refusal of society to make reasonable and not terribly expensive accommodations to it.

”There’s every reason to believe in hindsight that David Rivlin died unnecessarily, and that we who claimed to care about his ‘rights’ should have been demanding that services be made available for him rather than that he be allowed to die. As one who argued the wrong thing back then, I apologize for my shortsightedness.”

[http://www.lansingcitypulse.com/041006/features/health.asp HEALTH :: OCTOBER 06, 2004 A bioethicist offers an apology]

Too little, too late.  Flash forward to the late ‘90’s for the story of my former co-worker, Terrie Lincoln, who, along with her family, was repeatedly pressured to pull the plug on the ventilator that she needed the first few months after her spinal cord injury.  How many families are willing to be accused of being selfish and making their loved one suffer, and are able to argue and fight for the life of their loved one against the authority and smooth-talking style of doctors and hospital administrators?  Terrie survived, weaned off the ventilator, finished her education, got a job and is now raising her baby daughter.  But how many people with disabilities have died under these pressures without having the chance to live and enjoy life that Terrie got?

The reason that so many national disability organizations have taken a stand along side Not Dead Yet is that so many of us know people who survived these pressures, and knew others who have not.

The 90’s also brought us Jack Kevorkian, and many of us who followed the issue closely were horrified to see him embraced by progressive journalists like Mike Wallace of 60 Minutes and Barbara Walters.  And while he was constantly described as helping terminally ill people die, even the New England Journal of Medicine published a study documenting that two-thirds of his body count was people with disabilities who were not terminal at all.

By the mid-90’s we knew that we would need to do more than write articles and court briefs, more than give workshops at conferences and speak to the occasional reporter.  It became clear that we would need a group that would focus on this issue and add the tactics of non-violent direct action to our efforts.  When Bob Kafka, one of national ADAPT’s leaders, said “I’ve got a name for your group” from the movie Monty Python and the Holy Grail, that day in April 1996, Not Dead Yet began.

For the last three decades, assisted suicide proponents have told the press and the public that it’s about “compassionate progressives” versus the “religious right” and they’ve equated their proposals with “patient autonomy” and the “right to die”.  It’s a simple message, easy to convey, if one doesn’t mind ignoring inconvenient facts:

  • Like the pressure to reduce health care costs while sustaining health care industry and managed care organization profits;
  • Like the documented reality that predictions that someone will die in six months are often wrong;
  • Like the documented reality that people who want to die usually have treatable depression, whether they are terminal or not;
  • Like the documented reality that elder abuse is a growing problem, and the most frequent perpetrators are a spouse or adult child.

It’s not so simple to talk about those things, but we must.

Disabled people are in a unique position, caught between progressives and conservatives who don’t get it.  Too often our liberal or progressive allies on other issues over simplify the dangers facing elders and disabled people who depend on others for basic needs.  Meanwhile, conservative politicians, who see assisted suicide and euthanasia as violating their principles, see no contradiction as they slash budgets for the health care we need to survive. This is nothing less than back door euthanasia.

Disability rights groups have a unique perspective, informed by both our principles and our experiences.  Our principles embrace non-discrimination, civil rights and self-determination.  Our collective experiences include monumental struggles against the crushing oppression of a health care system that devalues us and a society that fears significant disability as a fate worse than death.

We are consumers on the front lines of the health care system, facing other people’s worst fears with grace and dignity, yet we have been pushed to the margins, accused of conflating disability and terminal illness, and even excluded outright from the debate on these issues.

Fortunately, in Vermont and Massachusetts, the disability community was front and center in the public debate on assisted suicide, sought out by the press for the insights you articulated so forcefully.  So really, I want to thank you, Sarah and John, and learn from you, because you’ve been in the trenches, taking this discussion to the next level.