Some Reflections on Disability and Bioethics

There is much in Mark Kuczewski's paper (2001) with which I agree. He has identified some risks that are attendant to the professionalization of bioethics and the insular enclaves its practitioners sometimes occupy. Among the enumerated risks are "overidentification with the medical profession," loss of empathy with the perspective of a "grittier consumer," a temptation for bioethicists to align themselves with money and power, and lack of dialogue with advocates from the disability community. Moreover, he notes a propensity to focus too heavily on sexy issues of life and death rather than disability. Kuczewski is right that the glass is half empty. However, I want to point to ways in which the glass should be seen as half full.

A Partial Analogy with the Legal Profession

Bioethicists come in many varieties. They can be divided into camps much the same way practitioners within the legal profession divide themselves. Some lawyers are identified primarily as plaintiffs' attorneys, while others are members of the defense bar. Each typically serves different clients and tends to endorse different world views. I don't want to push the analogy too far, for bioethicists have not drawn the distinctions as finely as lawyers have. Nor do I anticipate such a shift. Nonetheless, some parallels bear examination.

Consider the charge of overidentification with the medical profession and the temptation of bioethicists to align themselves with money and power. Two countervailing points should be mentioned.

First, lawyers who represent large corporations and powerful financial interests also have a risk of overidentification with the interests of those they serve. Members of the defense bar all too easily can come to embrace stereotypes of the deadbeat borrower, the disgruntled employee, or the meddlesome environmental do-gooder. They rarely consider or advocate for the points of view of the poor, the vulnerable, the victims of discrimination, or others whose civil rights and opportunities might be compromised by the actions of their employers. Plaintiff's lawyers see the "grittier consumer," and they often take on the perspectives and values of those lacking power and privilege. The same holds for bioethicists. As my colleague Bob Veatch often reminds me, many pioneers in bioethics were influenced by the civil rights and consumer movements of the 1960s and 1970s. Many bioethicists are insulated further from ideological pressures by virtue of the fact that they work in liberal arts faculties, schools of public health, government agencies, law schools, and independent research centers where the ethos of the medical profession and the interests of their corporate keepers hold relatively little sway. Moreover, the existence of a cadre of bioethicists who clearly do not depend on the approval of the rich and powerful helps shape the norms of bioethics itself and thus makes the phenomenon of ideological capture within medical settings less likely.

Second, even among those who do work within medical centers, there are many reasons to expect that their judgments will not be antithetical to the interests of persons with disabilities. Any empathetic bioethicist who works daily in a medical setting naturally will come to identify with the challenges that health professionals face. But this is not necessarily bad, nor is it the sum of their experiences. It would be a mistake to suppose that medical professionals hold values deeply opposed to those of the persons they are pledged to serve or that bioethicists are unmoved by the perspectives that patients and families in those settings provide. Bioethicists in clinical settings are in an unusual position, not unlike an ombudsman at a newspaper, an inspector general in the military, or an internal affairs officer within a police department. In each of these situations professionals often are paid for unwel- come advice, and their experiences are enriched by contact with just the sort of grittier consumer Kuczewski has in mind.

Bioethics Is More Than Clinical Ethics

Kuczewski also speaks of the propensity to focus on issues of life and death over less glamorous issues of disability. Perhaps the point has some plausibility within clinical bioethics. However, a...