A Ragged Edge Online

The following remarks by Prof. Alex Lubet were made at the protest rally against philosopher Peter Singer's appearance at the University of Minnesota on March 23, 2006. Lubet is UMN's Morse Alumni Distinguished Teaching Professor of Music and an Adjunct Professor of American Studies.

Peter Singer is a very bright and articulate man, precisely the sort of person he would deem worthy of life (though only for as long as he maintains his powers of wit and articulation). But he is an advocate and as such will say only what supports his case.

His former Princeton colleague, the long-celebrated journalist and First Amendment advocate Nat Hentoff, once referred to Singer as "a professor of infanticide." Make no mistake: Singer advocates for infanticide for children with significant disabilities with precisely that term. I refer you to his Rethinking Life and Death, pages 115-131and 214-215. I have a cheap used copy of the book -- I purchased it used to assure that nothing earned from its sale would pass into Mr. Singer's coffers. In this book and elsewhere he advocates at even greater length for euthanasia.

When you listen to or read Peter Singer, think about all the Sam Sullivans of the world.

These forms of Godplay are quite simply wrong. To many of us, this is merely intuitive and we are horrified to hear otherwise, even more to hear that their advocate is an honored and highly-paid guest of the University. But in case the jury is still out for you in these matters, please allow me to explain.

In Rethinking Life and Death, Singer has adopted spina bifida as his poster child for impairments that give a baby such poor "prospects" that her life is best voided at her parent's behest to make room for another whose shot at the good life is better. Were his position widely adopted, this country might have lost Riva Lehrer, one of its great figurative painters. The Minnesota Orchestra might have lost the past conductor of its Sommerfest, Maestro Jeffrey Tate, who is also a physician and gay rights advocate.

My point is not of course that some people with major impairments do great things -- although that is certainly true - but that we as a society have no more right or power or ability to decide and act upon the human worth or potential of a newborn than we have the ability to predict the future. Mr. Singer has taken to task those opponents of infanticide who compare it to a death sentence, noting, as if we need reminding, that the infant has done nothing wrong. Many of us are keenly aware of the legal team at Northwestern University that has unearthed the falsehood of so many guilty verdicts including those in capital offenses. When as a society we kill the innocent, they are the principal but by no means the only victims. We debase ourselves as a culture as well. Against Professor Singer's urging, we oppose such murder and debasement.

Professor Singer favors voluntary, physician-assisted euthanasia as well, and cites the Netherlands as the ideal for this practice. While I grant that in general his salesmanship for his ideas is remarkable and his books need thus be read with the greatest caution and the support of better information and analysis, he fails here. He notes that fully two percent of the deaths in the Netherlands are from voluntary euthanasia. That's a lot. You should be very afraid, because the practice is also legal in Oregon and may be coming to your neighborhood if its advocates have their way.

What makes the practice of physician-assisted euthanasia wrong? Why not permit those who would end their lives to do so in a clinical and presumably comfortable setting?

In the words of Elizabeth Barrett Browning, "let me count the ways":

Perhaps America's most articulate opponent of physician-assisted suicide is San Francisco State University historian Paul Longmore. I know Paul. A man with significant impairments who uses a power chair and a respirator 24/7 and has only very limited use of his hands, he is adamant that his formidable embodied difficulties have always amounted to very little in comparison to the social iniquities he has endured as a person with a disability.

Writing on the issue of physician-assisted suicide, Longmore asserts that it is the desperation that comes with the removal of social and cultural supports and social prejudice and devaluation, rather than the condition of one's body, that so often leads disabled, elderly, and sick people to seek an end to life. Unlike Singer's book, Longmore's Why I Burned My Book, apparently unafraid of the ramifications of his remarks, has no admonitions against quotation. In that book (on p. 160), Longmore writes:

In a society where people with disabilities are still intensely stigmatized and largely segregated and . . . in a society that still refuses to acknowledge the reality of that social oppression, the right to die will inevitably become a duty to die. People with major disabilities will be pressured into "choosing" to end their lives. . . . Rather than upholding your right to live productively and meaningfully, this society chooses to engineer your death.

Elsewhere in the same essay, Longmore cites a study that concludes that merely by enforcing existing statues on disability access and civil rights, 90 percent of all recipients of Social Security Insurance and Social Security Disability Insurance could work. In that context, I would note that, according to U. S. Census figures, people with disabilities have the highest unemployment rate of any category, while two large and extended studies by the very conservative DuPont corporation indicate that the demographic group whose work performance and employer satisfaction are highest are people with disabilities.

What's up with that?

And you wonder why people with disabilities are driven to question their life's worth and ability to persevere.

Many of the problems with physician-assisted suicide arise from our misconceptions about the medical-industrial complex. Longmore's research into assisted-suicide has indicated that patients with disabilities are often pressured into signing "Do Not Resuscitate" orders. He also cites studies that demonstrate, that far from being objective, physicians as a group are hugely afraid of major disabilities whose owners of those same impairments in the same report in the same landslide proportions having an average or better quality of life.

Finally, I would add that the assessment and management of both severe depression and chronic pain, both linked to the desire to die, are very far from exact sciences or even sciences at all. Doctors, simply human themselves, despite Singer's willingness to hand over so much authority to them, are neither trained nor qualified to evaluate the worth and quality of lives, only their organic functioning. Institutionalized death with the aid of "healing" clinicians is simply not a place we dare go.

I close with a couple of items from Canada, where I have roots. The first is from a disability activist, with two sons with cerebral palsy. He also does a little rock 'n' roll on the side and you may have heard of Neil Young. One of my favorite Young lyrics begins, "I wanna live, I wanna give." People with disabilities and people throughout the lifecourse want to and are capable of doing both. The rhetoric of burdens upon society and lives unworthy of life must be vanquished.

Several years ago, I interviewed Sam Sullivan, the founder of the Vancouver Adapted Music Society and four other disability organizations which, among other things, have commissioned vast amounts of technology that enables people with significant impairments to make music, to ski, to sail, to lead full and creative lives. Sam is quadriplegic and also seemed to be in some pain when I met him, the result of a skiing accident. He had at one time been deeply depressed. In other words, he was the sort of person who might well have been persuaded that his life was unworthy of life. He obviously chose differently.

Please keep in mind that the United Nations regards Canada as the country with the highest quality of life and Vancouver as its - and the world's -- most liveable city. The last I heard of Sam, he was receiving the Winter Olympic torch from the mayor of Turino, Italy. That's right, Sam Sullivan is now mayor of the best city in the best country in the world, the very kind of person with a disability who might have been a candidate for physician-assisted suicide had a lack of social and cultural supports and the lack of opportunity to live and give been the result of the kind of invidious prejudice that society's most vulnerable people endure throughout their lives. When you listen to or read Peter Singer - and don't buy a new copy of a book for which he'll receive royalties - think about all the Sam Sullivans of the world who wanna live and wanna give.

EDITOR'S NOTE: In an email message, Paul Longmore writes,

Professor Carol Gill has reviewed the research on health-care professionals' attitudes toward life with various disabilities and its implications for legalization of assisted suicide. ("Health Professionals, Disability, and Assisted Suicide: An Examination of Relevant Empirical Evidence and Reply to Batavia," _Psychology, Public Policy, & Law_ 6:2 (March 2000): 526-45.) Here is her summary of that literature:

"If the attitudes of health professionals regarding life with a disability significantly influence their patients' view of disability, and if physicians and other professionals would play central roles in legalized assisted suicide, the disability attitudes of health professionals warrant examination. In general, research indicates that people with disabilities encounter a great deal of devaluation from the general public despite societal support of disability access improvements and anti-discrimination laws (Vernaci, 1991). Furthermore, studies consistently demonstrate that disability attitudes of health professionals are as negative and sometimes more negative than public attitudes (Gething, 1992; Ralston, Zazove, & Gorenflo, 1996; Roush, 1986). More specifically, health professionals significantly underestimate the quality of life of persons with disabilities compared to the actual assessments of people with disabilities themselves. In fact, the gap between health professionals and people with disabilities in evaluating life with disability is consistent and stunning. In a survey study of attitudes of 153 emergency care providers, only 18% of physicians, nurses and technicians imagined they would be glad to be alive with a severe spinal cord injury. In contrast, 92% of a comparison group of 128 persons with high-level spinal cord injuries said they were glad to be alive (Gerhart, Koziol-McLain, Lowenstein, & Whiteneck, 1994). Furthermore, only 17% of the professionals anticipated an average or better quality of life should they acquire this disability compared with 86% of the actual spinal cord injury comparison group. The investigators express concern that these inaccurate and pessimistic professional views of life with disability are implicitly conveyed to patients and their families while they are in the midst of decision-making about new disabilities. In another survey of emergency personnel (Hauswald & Tanberg, 1993), 82% indicated that they preferred death to severe disability. Bach and Tilton (1994) found that hospital staff significantly underestimated life satisfaction of quadriplegic individuals using ventilators. The tendency of health professionals to overestimate depressed mood in persons with spinal cord injuries has been well documented (Bodenhamer, et al., 1983; Cushman & Dijkers, 1990; Ernst, 1987). Other studies have indicated that compared with individuals with disabilities themselves, health professionals significantly underestimate the well-being and life satisfaction of ventilator-assisted polio survivors (Bach & Campagnolo, 1992); primary care physicians underestimate the global quality of life of their elderly patients with chronic conditions (Uhlmann & Pearlman, 1991); and physicians substantially overestimate the willingness of laryngectomy patients to die rather then lose their ability to use their voice (Otto, Dobie, Lawrence & Sakai, 1997). Physicians also tend to overestimate the negative effect on families of having a child with spina bifida (Blaymore, Liebling, Morales, & Carlucci, 1996) and to underestimate the future capabilities of children with developmental disabilities (Wolraich, Siperstein, & O'Keefe, 1987)."

Sources cited by Gill:

• C. A. Bach and R. W. McDaniel, "Quality of Life in Quadriplegic Adults: A Focus Group Study,"Rehabilitation Nursing 18:6 (1993): 364-67
• J. R. Bach and D. I. Campagnolo, "Psychosocial Adjustment of Post-Polio Ventilator Assisted Individuals,Archives of Physical Medicine and Rehabilitation 73:10 (1992): 934-39
• J. R. Bach and M. C. Tilton, "Life Satisfaction and Well-being Measures in Ventilator Assisted Individuals with Traumatic Tetraplegia,Archives of Physical Medicine and Rehabilitation 75 (1994): 626-32
• Blaymore Bier, J. A. Liebling, Y. Morales, and M. Carlucci, "Parents' and Pediatricians' Views of Individuals with Meningomyelocele,"Clinical Pediatrics 35: 3 (1996): 113-17
• E. Bodenhamer, J. Achterberg-Lawlis, G. Keverkian, A. Belanus, and J. Cofer, "Staff and Patient Perceptions of the Psychosocial Concerns of Spinal Cord-injured Persons,"American Journal of Physical Medicine & Rehabilitation 62 (1983): 182-93
• L. A. Cushman and M. P. Dijkers, "Depressed Mood in Spinal Cord Injured Patients: Staff Perceptions and Patient Realities,"Archives of Physical Medicine and Rehabilitation 71 (1990): 191-96
• F. A. Ernst, "Contrasting Perceptions of Distress by Research Personnel and Their Spinal Cord Injured Subjects,"American Journal of Physical Medicine & Rehabilitation 66 (1987):12-15
• K. A. Gerhart, J. Kozoil-McLain, S. R. Lowenstein, and G. G. Whiteneck, "Quality of Life Following Spinal Cord Injury: Knowledge and Attitudes of Emergency Care Providers,"Annals of Emergency Medicine 23 (1994): 807-12
• L. Gething, "Judgments by Health Professionals of Personal Characteristics of People with a Visible Physical Disability,"Social Science and Medicine 34 (1992): 809-15
• M. Hauswald and D. Tanberg, "Out-of-hospital Resuscitation Preferences of Emergency Health Care Workers,"American Journal of Emergency Medicine 11:3 (1993): 221-24
• R. A. Otto, R. A. Dobie, V. Lawrence, and C. Sakai, (1997) "Impact of a Laryngectomy on Quality of Life: Perspective of the Patient versus that of the Health Care Provider,"Annals of Otology, Rhinology & Laryngology 106:8 (1997): 693-99
• E. Ralston, P. Zazove and D. W. Gorenflo, "Physicians' Attitudes and Beliefs About Deaf Patients,"Journal of the American Board of Family Practice 9:3 (1996): 167-73
• S. E. Roush, "Health Professions as Contributors to Attitudes Towards Persons with Disabilities: A Special Communication,"Physical Therapy 66:10 (1986): 1551-54
• R. F. Uhlmann and R. A. Pearlman, "Perceived Quality of Life and Preferences for Life-sustaining Treatment in Older Adults,"Archives of Internal Medicine 151:3 (1991): 495-97
• R. L. Vernaci, "Disabilities Scary for Many: Survey,"Nashville Banner, October 11, 1991, 5
• M. L. Wolraich, G. N. Siperstein, and P. O'Keefe, "Pediatricians' Perceptions of Mentally Retarded Individuals,"Pediatrics 80:5 (1987): 643-49.