Confronting Ableist Bias

(28 March 2000) — Robert Latimer's Supreme Court Appeal will be heard on 14 June 2000 and this will occasion an outpouring of pro- Robert Latimer support. Past experience suggests that some bioethicists will be among his supporters. Ethicist Eike Henner Kluge has stated, "Tracy would not have been in this situation if people had not used heroic means all along. Someone should have stopped along the way and asked, 'Should we be doing this? By keeping her alive to face a declining quality of life, they were committing what ethicists call 'the injury of continuing existence.' In the end, the parents faced a situation in which they had no choice." The disability community has also witnessed ethicists deny that the Latimer case is about disability. In other cases, ethicists have advocated that children with disabilities have a right to assisted suicide. Since the Latimer case started to make headlines in Canada's media, bioethicists have been viewed as legitimate commentators. Bioethicists address health care issues and because Tracy had a disability some view this case as falling within the purview of those who address health care issues.

It is obvious to many within the disability community in Canada that mainstream bioethics bases many of its arguments on ableist assumptions. Today's bioethics is heavily influenced by utilitarianism, which emphasizes quality of life arguments. Anyone who has followed the Latimer case will be well aware of how ableist quality of life arguments are used to justify the termination of a life with a disability.

Commentaries such as that made by Kluge have prompted leaders within the Canadian disability rights movement to reflect upon the role that ethicists are playing in society. The late Allan Simpson, one of the founders of CCD, was deeply concerned about the power being wielded by ethicists. He stated, "I'm shocked now to learn these ethicists are involved in hospital panels that give the endorsement to doctors to withdraw services and to assist in the deaths of individuals under their care...Of course, they give us extreme examples—people who are in their last hours of life dying of cancer. They compare those situations with those that we encounter with people with extensive disabilities perhaps with pneumonia or other kinds of conditions that can be corrected. Then it is concluded that it is also all right to withdraw services from those people—deny them a ventilator, deny them other services. To see ethicists who should be defending ethics being co-opted into review panels and methodologies to approve the denial of services or life itself by panels and doctors, is basically setting up a whole execution industry."

Wesley J. Smith who has written an article titled, "Is Bioethics Ethical?", which appears in The Weekly Standard, presents a further analysis of bioethics' impact on society and public policy. Smith's objective in writing this article is to bring bioethical discussions down from the ivory tower of academia; so that the general public, who may very well be affected by these concepts, will be more knowledgeable about the ideas and assumptions that are shaping public policy. As bioethicists have been commentators on the Latimer case, a report on Smith's article will be presented here to help prepare consumers advance a disability rights perspective in June when the case is at the Supreme Court.

As evidence of the increasing influence of bioethicists, Smith cites what happened in the case of Armstrong v. Montana. According to Smith, the judge in this case based his decision largely on the writings of Ronald Dworkin, a bioethicist and attorney. Smith writes, "The majority opinion in Armstrong cites Life's Dominion so many times and applies its reasoning so enthusiastically that Ronald Dworkin's philosophy may now be considered the court-mandated health care creed of the state of Montana." Smith believes that the decision means that, "anything goes medically in Montana so long as a patient requests it and a health care professional is willing to provide it, then patients can ask doctors to kill them for organ-donation purposes, parents or guardians can secure the killing of disabled infants...—all this as a result not of a considered decision by the people of Montana but of a little-noticed ruling by the state supreme court." Smith is not the only one concerned about the decision. Two dissenting judges in the case have pointed out that, "...the Court's opinion sweeps so broadly as to encompass and decide such issues as the right to physician-assisted suicide and other important health and medical-related issues which were simply not litigated in this case." Smith believes we are careening down a slippery slope which has at its base the exploitation of some people with disabilities, for organ harvesting purposes.

Smith calls for a grassroots citizens movement which would see people with a human rights agenda opposing the ableist ideology of bioethics. He writes, "Since it is almost surely too late to transform the [bioethics] movement's utilitarian assumptions from within, keeping the movement contained inside the academy appears to be the most promising strategy to prevent our society from being made in bioethics' image. To do this will require heightened media scrutiny and public awareness of what ideological ethics is, what it stands for, why it matters, and what consequences will befall us if the "new medicine" becomes our future. That is easier said than done, of course. But there are ways. The ideology could be engaged vigorously, from the grassroots to the academy to the halls of Congress. Philanthropists could be persuaded to endow academy chairs dedicated to exploring human equality as the basis for health care law and policy, much as bioethics chairs are used to promote the quality of life agenda. Politicians, devoted to their constituents' welfare, could resist the bioethics tide. Nonprofit groups could be formed to follow the bioethics movement, publish journals, engage the proponents in public debate, and alert the media to particularly noxious developments. The popular media...could recognize the urgency of covering bioethics as seriously as they cover politics. After all, are not issues like personhood and the harvesting of organs from living people as compelling as tax policy and welfare reform?" Some of the work referred to by Smith is being initiatived by disability rights activists. For example, Dr. Gregor Wolbring, a member of CCD's Human Rights Committee, has been educating health professionals, academics and biotechnology activists about their eugenic bias and how this negatively impacts on human rights protection. Most recently he addressed the 4th Biodevastation conference in Boston, speaking on "The Anti-Biotech and the Disability Movements where do they colide and what do they have in common? "To join the discussion, subscribe to the bioethics group (http://www.onelist.com/group/Bioethics), moderated by Dr. Gregor Wolbring.