New England Regional Director, Not Dead Yet

Ever since a spinal injury in 1984 left me “paralyzed from the neck down,” I have been confronted by suggestions of death and suicide. People like my father who wished I had died in my accident, the people who said they’d rather be dead than like me, the presentation of suicide as the noble response to my disability in movies like “Whose Life Is It Anyway?”

In the few years after my injury, I joked about suicide and made a plan. Bowel and bladder incontinence especially would bring on a death wish. These same issues came to fuel the assisted suicide movement. Assisted suicide programs blur the difference between disability and imminent terminality. The precipitating concerns are related to dependence on others, feeling like a burden, and incontinence.  Right now in Canada, I am eligible.

In graduate school, I learned about the “right to die” cases of the 1980s and 90s – people with similar disabilities to me who were put on the fast track to death while being denied the resources to live. I felt a connection to Larry McAfee, who was court-approved for suicide simply because of his disability. McAfee renounced his decision when given independent living opportunities.

And then came Kevorkian, who with much social approval was killing people with disabilities and calling them terminally ill. I joined Not Dead Yet and saw that organ transplant professionals wanted authorization to approach newly spinal cord injured people to encourage them to surrender their organs so that recipients could have a higher quality of life.

In 2018, when I had necrotizing pneumonia and there were questions about getting off a respirator and continuing to live independently, the doctor asked my brothers about my “quality-of-life.” This is a phrase that leads to disabled people’s death.

I sometimes get depressed and am terrified of a treating doctor supporting my suicide or death.