A Brief History of Not Dead Yet

By Diane Coleman: For Complete Post, Click Here…

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.

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