Self-Determination Threatened

(2 December 1998) — When Catherine Frazee, a member of CCD's Human Rights Committee, spoke to a gathering in Winnipeg to commemorate the 50th anniversary of the Universal Declaration Human Rights, she titled her presentation "Eugenics: Who Gets to Live". Recent events in Canada and elsewhere demonstrate that eugenic assumptions continue to cause the deaths of people with disabilities.

These assumptions are so strong that even when those closest to people with disabilities want to see their loved ones continue to live, society is willing to intervene to bring about the deaths of those it considers to be too disabled to live. The New Zealand case of Baby L is an important international example because it illustrates that the issues Canadians are confronting are really global issues.

The Facts of the Baby L Case—Baby L, who was born two months prematurely, was diagnosed as having Mobius Syndrome, Poland's Anomaly, brain damage, visual impairment, deafness, Cerebral Palsy, and needing a ventilator and tube feeding.

Despite the fact that Baby L's parents wanted to keep her alive, medical staff decided that Baby L should die. The National Women's Hospital's Ethics Committee decided that Baby L's treatment was "futile and therefore inhumane." The New Zealand High Court allowed doctors to discontinue life support for Baby L and she died on 26 September 1998.

The parents believed that discontinuing Baby L's life support was akin to an execution. Baby L's parents made room for their daughter in their family life. "I sing to her, wash her, talk to her all the time. I have a strong bond with her and cannot imagine life without her," said Baby L's mother. For Baby L's mother, the life of her disabled daughter had value.

The National Women's Hospital's Ethics Committee was a driving force behind the termination of Baby L's life. It is useful to examine the type of analysis that drives the decision making processes of ethicists.

The field of modern ethics has been influenced a great deal by the work of Peter Singer, who has written books such as Rethinking Life and Death, in which he has proposed some new commandments.

First New Commandment: Recognize that the worth of human life varies. Singer argues that human beings should be treated in accordance with their ethically relevant characteristics: consciousness, the capacity for physical, social and mental interactions with other beings, having conscious preferences for continued life and having enjoyable experiences. Singer's "ethically relevant characteristics" are rife with ableist biases.

Second New Commandment: Take responsibility for the consequences of your decisions. This new commandment requires that doctors "ask whether a decision that they foresee will end a patient's life is the right one, all things considered." A fundamental issue here is who is making the decision. Very few people with disabilities are making these decisions. Studies have demonstrated that nondisabled clinicians rate disabled people's quality of life lower than do people with disabilities, themselves.

Third New Commandment: Respect a person's desire to live or die. This commandment ignores social dynamics that devalue the lives of both people with disabilities and people experiencing ill health. This devaluation can be so great that in some circumstances the choice to die is not really a freely made choice.

Fourth New Commandment: Bring children only into the world if they are wanted. While a woman's choice of self-determination is not at issue, it must be remembered that current negative attitudes about disability can establish a coercive environment where mothers of disabled fetuses feel obliged to abort.

Fifth New Commandment: Do not discriminate on the basis of species. For Singer, similar to race and gender, species is not an appropriate demarcation of social value. This commandment will not be discussed here as it is outside the scope of this publication.

Practical Applications—Singer applies his commandments to real life situations.

Brain death, anencephaly, cortical death, and persistent vegetative state—For Singer the new commandments make end of life decisions about people with these conditions more manageable. He states, "When the parents of an anencephalic baby would like their child to be used as a source of organs to save the life of another infant, the fact that the anencephalic baby is alive should not stop us from doing the obvious thing: taking the heart from the baby who cannot benefit from continued life, and giving it to the one who can."

Infants—From his writing, it seems that Singer would have no ethical problem condoning infanticide of babies born with Down's Syndrome, for example. He writes, "Both for the sake of 'our children', then, and for our own sake, we may not want a child to start on life's uncertain voyage if the prospects are clouded....This means detaching ourselves from the infant who has been born, cutting ourselves free before the ties that have already begun to bind us to our child become irresistible...It must be extraordinarily difficult to cut oneself off from one's own child, and prefer it to die, so that another child with better prospects can be born."

The case of Baby L illustrates that Ethics Committees can play an important role in what happens to people with disabilities who find themselves in hospital. The foregoing brief overview of Peter Singer's writings demonstrates that ethics can be very ableist in its orientation. It must be noted that Singer has gained acceptance in certain circles. The New England Journal of Medicine wrote, "Peter Singer...has probably a larger popular readership than any professional philosopher since Bertrand Russell, and more success in effecting changes in acceptable behaviors." Consequently, it behooves activists with disabilities interested in fundamental human rights to become involved in the field of ethics and for organizations of persons with disabilities to gain membership on hospitals' Ethics Committees. In the Seventies, the self-representational organizations of people with disabilities sought access to municipal transportation committees and other similar decision making bodies. Today, the new frontier is those structures which make life and death decisions.