The Concept of Disability in Bioethics: Theoretical and Clinical Issues

Overall, I agree with Mark Kuczewski (2001) that bioethicists have not paid adequate attention to disability issues. While I do not agree with every point in his agenda for bioethics, I accept his overall conclusion and welcome his message. In this commentary, I will not critique his essay per se, but I will suggest some ways that bioethicists can address disability issues in their scholarship and teaching.

Theoretical Issues: Concepts of Health, Disease, and Disability

Since its very beginnings, the discipline of bioethics has addressed concepts of health and disease. A wide variety of philosophers, social scientists, natural scientists, physicians, psychiatrists, and psychologists have made important contributions to this debate, including George Agich, Christopher Boorse, Arthur Caplan, Daniel Clouser, Charles Culver, Norman Daniels, Tristam Englehardt, Michel Foucault, Bernard Gert, Loretta Kopelman, Jack Margolis, Edmund Pellegrino, Lawrie Reznik, Michael Ruse, Kenneth Schaffner, Thomas Szaz, David Thomasma, and Caroline Whitbeck. This has been a vigorous and thoughtful debate that is far from resolved. By reflecting on the concepts of health and disease, we have gained a better understanding of important concepts in healthcare, such as "normalcy," the role of psychosocial and cultural factors in health and disease, and the relationship between descriptive claims and normative claims in bioethics. The best minds in biomedicine have tackled these problems and they have produced useful results.

Although not everyone who writes about health and disease also addresses the topic of disability, some have. Daniels (1984) analyzes the concept of disability in terms of deviation from normal functioning: disabilities and diseases both cause injustice because they limit a person's normal range of opportunities. Clouser, Culver, and Gert (1997) define disability in terms of the concept of a malady: a disability is a type of harm that can result in a malady. A person who is disabled lacks an ability that is normal for a member of the human species, such as the ability to hear, to see, or to walk. Buchanan (1996) relates the concept of disability to the theory of social justice and argues that society makes choices about who will be disabled. Societies can choose whether to accommodate people with disabilities, to provide medical treatment for disabilities, or to prevent people from being born with disabilities. All of these choices can be evaluated in terms of the effect on opportunities for disabled people.

Although those who address theoretical topics in bioethics have not completely ignored the concept of disability, one might argue that they have not paid sufficient attention to the concept and that much more work needs to be done to define the concept of "disability" and related terms like "impairment" and "handicap." We also need more discussion of the relation between disability and health and different types of disabilities, such as mental disability, physically disability, and so on. One recent volume worth mentioning contains several theoretical essays on the concept of disability. Several of the papers in Prenatal Testing and Disability Rights (1999), edited by Erik Parens and Adrienne Asch, analyze the concept of disability. These include essays by Bonnie Steinbock, Dorothy Wertz, James Lindeman Nelson, and Jeffrey Botkin. It is also worth noting that Buchanan et al. (2000) provide an insightful discussion of the concept of disability in the context of reproductive choice. They use Daniels's (1984) analysis of disability to argue that parents should be allowed to take steps to prevent their children from being born with disabilities but that societies should also take steps to accommodate people with disabilities.

Clinical Issues

Many of the clinical issues in bioethics have a direct bearing on the rights and concerns of people with disabilities and how the healthcare system treats people with disabilities. Kuczewski mentions some of these, such as end-of-life decisions, euthanasia, long term care, rehabilitation, healthcare rights, and healthcare allocation. Kuczewski also mentions the whole range of legal/political/ethical issues relating to the Americans with Disabilities Act. I would like to add several clinical issues to this list.

Caring for...