Death with Dignity and People with Disabilities

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Joan Tollifson portrait

This is a guest post by Joan Tollifson (the subheadings and links are ours). Read our open call for guest posts →

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Joan Tollifson is an author and teacher who was active in the disability rights movement and the independent living movement. She was a participant in the historic month-long 504 Occupation in 1977 of the San Francisco federal building for disability rights, worked at the Center for Independent Living in Berkeley, and has written numerous articles on disability, several of which have appeared these anthologies on disability: Staring Back, Voices from the Edge, and With the Power of Each Breath. Disability was also a major theme in her first book, Bare-Bones Meditation: Waking Up from the Story of My Life, a spiritual memoir. She is the author of four books on non-duality and meditation. She lives in Ashland, Oregon. Find her online at www.JoanTollifson.com.

Much of the opposition to physician-assisted dying comes from disability rights activists who falsely assume that legalizing the right to die poses a danger to them and undermines the value of their lives. Some people with disabilities fear that physician-assisted dying is a slippery slope and that if we legalize it in any form, soon we’ll be killing all disabled babies at birth, people will be bumping off their aging grandparents to get out of caring for them, and everyone in a wheelchair will feel obligated to kill themselves so as not to be a burden. Some people with disabilities hear in the right-to-die movement the old message that we disabled folks would be better off dead and that our lives are not worth living.

I understand from my own life experience where these fears come from. I am an older person, and I was born with a disability (my father was offered the chance to smother me at birth as a result). I have also had many friends over the years with severe disabilities, as well as friends who have lived well with serious chronic pain and incapacitation. But in the case of right-to die legislation, I feel that these concerns are enormously exaggerated and actually quite paranoid and misinformed.

Safeguards in Death with Dignity laws

The current laws that allow physician-assisted dying, or death with dignity, are all very carefully crafted with many safeguards. No one behind these laws is arguing that anyone “should” end their lives, nor does having the right to choose death in certain situations mean that elders or people with disabilities are worthless or better off dead. This is about choice, not coercion or devaluing the lives of elders and people with disabilities. I seriously doubt that right-to-die laws will result in mass exterminations of elders and people with disabilities, nor do I believe that most people would allow that to happen. That certainly hasn’t been the case here in Oregon, where we do have right to die under certain, very limited conditions.

Questioning the Prolonging Life at All Costs

I question the idea that our goal as human beings should be to prolong life at all costs. This kind of thinking comes from a fear of death and a misunderstanding of life. My mother, who loved life passionately, was a strong believer in the right to die. She had no desire to linger beyond the point where life was no longer enjoyable, and she said over and over in her final years that she was ready to go. She had no fear of death. Luckily, she died without a prolonged period of excruciating pain and incapacitation. But not everyone is so lucky.

I have no desire to spend a long time incapacitated and in excruciating pain before I die. I’ve watched loved ones go through all of that, and I know it is no picnic. I saw my aunt being forced to eat in the nursing home when her body clearly wanted to stop eating so she could let go. I don’t have children or siblings or a partner to take care of me in my old age if I become debilitated, and most of my friends are my age or older. I wouldn’t want any of them to have to dedicate their remaining time and energy to taking care of me when recovery is not an option and the quality of my life is (in my estimation) miserable.

We spend an astronomical amount of money in this country on end-of-life care, often on extraordinary measures prolonging the end of life with feeding tubes and ventilators. In my case, I’d much rather have that money spent elsewhere—there are so many things it could be used for instead. I respect the right of others to have different priorities and to make different end of life choices than I would, and I’d like them to give me the same consideration and freedom. I don’t know what’s ahead for me—none of us do. I know what I think I want, and I’ve drawn up my legal papers and left instructions accordingly. At the very least, I’d like the choice.

A friend of mine who died of cancer a few years ago was very happy to be here in Oregon where Death with Dignity is legal. It wasn’t easy to get the prescription, it was a long process. My friend had to jump through many hoops to get those meds: Two doctors had to sign off, forms had to be filled out, people came to talk with my friend and her partner. And she had less than the required prognosis here in Oregon of no more than 6 months to live. In the end, she didn’t use the drugs to end her life. She kept saying it was so interesting how everything was falling away, and she ended up letting the dying process take its course. But she was very glad she had the choice.

In Support of Proposed Legislation

I hope that the legislation supporting the right to die that is currently moving through the state legislature in California and elsewhere will be successful. Those disability groups who are siding with the religious right on this issue don’t speak for all of us with disabilities. Many elders and people with disabilities very much want physician-assisted dying to be legalized.

Death is part of life, not a horrible thing. I love life, but I’m not afraid of death either. Those who feel differently are free to prolong their lives in every way possible for as long as possible. As a deeply religious person (in the truest sense of religion), I see no problem at all with ending my life at a time of my own choosing, if and when, in my judgment, that becomes the best option for myself and all concerned.

View full post on Death with Dignity National Center



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