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April 2002

By Kristen Pratt Machado

Not Dead Yet

If a human being is not capable of understanding the choice between life and death, euthanasia would be neither voluntary nor involuntary, but non-voluntary. Those unable to give consent would include incurably ill or severely disabled infants, and people who through accident, illness, or old age have permanently lost the capacity to understand the issue involved, without having previously requested or rejected euthanasia in these circumstances.

"Several cases of non-voluntary euthanasia have reached the courts and the popular press. Here is one example. Louis Repouille had a son who was described as ‘incurably imbecile', had been bed-ridden since infancy and blind for five years. According to Repouille: ‘He was just like dead all the time.... He couldn't walk, he couldn't talk, he couldn't do anything.' In the end Repouille killed his son with chloroform."¹

This excerpt comes from bioethicist and Princeton professor Peter Singer's book Practical Ethics, and is controversial for obvious reasons. When Singer was asked to speak at the 2001 Governor's Commission on Disability in Concord, NH, the grassroots disability organization opposed to legalized assisted suicide and euthanasia, Not Dead Yet (www.notdeadyet.org), launched a protest against his appearance, citing it as an insult to disabled people. Diane Coleman, JD, MBA, president of Not Dead Yet, wrote in a letter to Michael D. Jenkins, executive director of the Governor's Commission on Disability, "It is one thing for disability advocates to debate Singer in a general public forum. It is quite another to invite him into our community.... Singer is more than ‘controversial.' He advocates changes in public policy that would deprive millions of people with cognitive disabilities equal protection of the law and allow those who do not meet his fuzzy criteria for ‘personhood' to be killed by medical professionals with the ‘consent' of their families."²

Singer, who is probably best known as a proponent of the ethical treatment of animals, defends his stance on nonvoluntary euthanasia, "In Germany, my advocacy of active euthanasia for severely disabled newborn infants has generated heated controversy.... Perhaps it is only to be expected, though, that there should be heated opposition to an ethic that challenges the hitherto generally accepted ethical superiority of human beings, and the traditional view of the sanctity of human life."³

Having recently attended the 18th International Seating Symposium in Vancouver, I found Singer's philosophy particularly disturbing. I wish that he could witness this dedicated group of clinicians and manufacturers who are committed to the seating and positioning needs and the improvement of independent mobility for people with disabilities, both cognitive and physical. I attended a session titled "Self-Initiated Mobility Is the Way to Go" where the clinicians showed videos of their disabled pediatric clients who were trying out adapted mobility devices with the goal of finding a device that would provide the children with their first glimpse of independent movement. I was moved to tears each time these children were featured who, through the therapists' and assistive technology providers' ingenuity, explored their environment by themselves for the first time-it was pure joy exemplified.

Ginny Paleg, MPT, and Janice Fisher, MS, PT, ATP, share their success story on page 32 with Craig, a 6-year-old boy with osteogenesis imperfecta, who gains the ability to move, exercise, and sit on the floor and play with his four brothers. I wonder what Peter Singer would have to say about that.

—Kristen Pratt Machado is no longer Editor of Rehab Management. Please address any correspondence to Sarah Schmelling, Senior Editor, at cwolski@medpubs.com.

Reference
1. Singer P. Practical Ethics. Cambridge, Mass: Cambridge University Press; 1993:181.
2. Letter from Not Dead Yet president Diane Coleman to Michael Jenkins. Ragged Edge Online. Available at: www.ragged-edge-mag.com. Accessed April 2, 2002.
3. Singer P. A philosophical self-portrait. In: Mautner T, ed. The Penguin Dictionary of Philosophy. New York: Penguin USA; 1997:521-522.

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