DISABILITY

Science and technology are pursued for human benefit. But the particular benefits of scientific research and technological development are the result of human activities embodying various cultural, economic, and ethical frameworks as well as the perspectives, purposes, and prejudices of any given society and of powerful groups within it. One group that should benefit includes disabled people. But such benefit will in large measure depend on the governance of science and technology, the involvement of disabled people themselves in their governance, and on the very concept of disability, an issue that is more contentious than commonly recognized. With regard to science, technology, and disability, there are at least two ethical issues that deserve more consideration than they are usually given: What perception of disabled people guides scientific research and technological development? What role do disabled people play in this process?

Solutions Follow Perceptions

Science and technology for disabled people depend on how so-called disabilities and disabled people are perceived. Definitions of disability range from the biomedical and economic to the liberal, social-political, minority rights, and universalist models (Penney 2002). These may nevertheless be reduced to three main perspectives:

The medical individualistic perspective (MP) sees disabled people as patients in need of being treated so that their level of functioning and appearance approaches that of the so-called non-disabled people (the norm). It assumes that disabled people perceive themselves as patients, and their own biological reality as defective or subnormal. It promotes the use of science and technology for the development of normative therapies for disabled people.

The transhumanist perspective (TP) is similar to the medical perspective with the modification that it sees both disabled and non-disabled people as patients. The human body in general is judged to be defective and in need of indefinite enhancement. Even normally existing abilities are subject to being raised above the norm or complemented with new abilities. The transhumanist (or posthumanist) perspective does not accept a given norm, and thus does not accept the subnormal/normal distinction between the disabled and non-disabled. The human body in general is seen as subnormal and in need of scientific-technological enforcement. It is no accident that Ray Kurzweil, inventor of the computer voice synthesizer the Kurzweil Reader for the blind, is also a strong proponent of transhumanist technological transformations for everyone.

The social justice perspective (SP) does not see disabled people as patients in need of treatment or enhancement so much as society in need of transformation. It assumes that most problems faced by disabled people are not generated by their non-normative bodies or capabilities but by the inability of society to fully integrate, support, and accept individuals with different biological realities and abilities. The social justice perspective encourages the use of science and technology to alter the physical environment so that disabled people may more easily interact with non-disabled people. The focus is on social, not medical, cures.

The social perspective also allows able-ism to be seen as analogous to racism or sexism, with able-ism constituting a network of beliefs and practices that yield a particular kind of self and body (the corporeal standard) that is then projected as the perfect, species-typical, and therefore essential and fully human. From the viewpoint of able-ism, disability becomes a diminished state of being human.

The social perspective on disability does not deny that disabled people possess certain biological realities (such as having no legs), which make them different in their abilities and cause them to deviate from a norm. However, it views the "need to fit a norm" as the main problem, and questions whether all deviations from the norm require a medical solution (adherence to the norm). Maybe in some cases a social solution (change or elimination of norm) would be just as appropriate. Neither does the social perspective deny the existence of symptomatic acute medical problems that should be treated. It simply questions the increasing medicalization of non-normative characteristics and sees many so-called diseases, defects and impairments not as acute medical problems but as societal constructions (Wolbring 2003b). It questions whether medical solutions are always the best response.

Scientific research and technological development may emphasize fixing the disabled (on an MP basis); science and technology may also seek to enhance the disabled (on a TP basis). Or technology especially can be used to reconstruct the world in ways that allow the disabled to interact freely with others without altering their biological identity/reality (on an SP basis). "Barrier-free access" is, for example, an SP program.

Society has a long history of adopting the MP approach to seeing disabilities. Many legal instruments describe a disabled person as someone with subnormal or diminished functioning in need of special care. They do not see disabled people as having a biological reality leading to different sets of abilities, different ways of functioning and different needs. The medical understanding of disabilities is essential for the acceptance and market-ability of many scientific and technological applications such as genetic and non-genetic prebirth testing and genetic and non-genetic therapies and enhancements.

However, this traditional focus is being replaced by a transhumanist focus on science and technology as a means to not just meet norms but to enhance existing abilities and add new ones. It is becoming increasingly difficult to draw a line between therapy and enhancement. If one believes someone is defective without legs, and finds it acceptable to develop artificial legs that function like normal biological legs restoring the normative characteristics of walking (medical cure), one has a hard time justifying the denial of artificial that improve on the natural capabilities of biological legs (running faster, jumping higher) and that might add capabilities beyond the scope of normal biological legs such as climbing walls (transhumanist enhancements).

Scientific and technological research with an SP justification to develop software and hardware that allows the usage by clients with the widest range of abilities is rare. This reflects the fact that most product development is geared toward the largest common denominator in the market so as to ensure the highest profit. Products are seldom developed for disabled people because their numbers are not big enough to make a profit. Without a change in social policies and dynamics, this will not change significantly. In the United States, the Americans with Disabilities Act (ADA), which resulted from the lobbying of the disabled as a public interest group, created a new market for barrier free access and other technological developments.

Roles For Disabled People

Can disabled people influence the indicated dynamics? Do they have to accept the medical or transhumanist perspectives on disabilities? Is it possible for them to promote the social justice perspective?

The disabilities rights movement and emergence of disability activism in the early 1980s provides one kind of answer to such questions (see Shapiro 1994). Disabled persons, no matter how they are defined, worked together in ways that led, in the United States for instance, to passage of the Americans with Disabilities Act (ADA) of 1990, the focus of which was on changing the environmental parameters of the lives of disabled people. However the ADA has been siege ever since its passing, and although it was somewhat successful with access issues, the ADA does not sufficiently cover emerging technologies; nor has it decreased the development of technologies that focus on the medical perception of disability. An increase of the presence of disabled persons among the ranks of scientists, engineers, and ethicists would be another means of more specifically influencing scientific and technology policy.

Certainly some negative consequences of science and technology can be avoided by integrating ethics into the governance of science and technology. But what kind of ethics? Ethical guidelines are not always free from biases that reflect the perspectives, purposes, and prejudices of the most powerful social groups. Much debate about science policy and the legal regulation of technology appears to accept the medical perspective of disability, with some qualified influence of the transhumanist perspective, but little appreciation of the social justice perspective (see, e.g., Harris 2000; Singer 2001; UNESCO 2003; and Wolbring 2003a and 2003c). One of the most effective ways for disabled persons who might object to this situation to counter it is to themselves become involved in policy national and international formation.

At the same time, disabled persons need not shy from inviting non-disabled people of power to ask themselves the following questions:

• Does scientific and technological decision making lead to further marginalization of disabled people?
• Does scientific and technological practice allow disabled people to freely choose their self-identity?
• Do science and technology by themselves have similar impacts on disabled and non-disabled people?
• Does the transhumanist perspective force non-disabled people to enhance their abilities and does it encourage society to make these new abilities eventually the new norm ("normative creep") that makes society less accepting of differences?
• What policy guidelines are needed to promote science and technology for the common good in an inclusive society?
• How the governance of science and technology be made more inclusive and diverse?

GREGOR WOLBRING

SEE ALSO Bioethics;Informed Consent;Medical Ethics.

BIBLIOGRAPHY

Albrecht, Gary L.; Katherine D. Seelman, and Michael Bury, eds. (2001). Handbook of Disability Studies. Thousand Oaks, CA: Sage. A collection of thirty-five articles on the shaping of disabilities studies, experiencing disability, and disability in context.

Barton, Len, ed. (2001). Disability Politics and the Struggle for Change. London: David Fulton. Twelve essays on disability, mostly in the British context.

Harris, John. (2000). "Is There A Coherent Social Conception of Disability?" Journal of Medical Ethics 26(2): 95–100. Harris denounces the social justice model of disability and the claim that disability is a medical issue.

Johnston, David. (2001). An Introduction to Disability Studies, 2nd edition. London: David Fulton. A synoptic overview of disability studies in both the United Kingdom and United States.

Shapiro, Joseph P. (1994). No Pity: People with Disabilities Forging a New Civil Rights Movement. New York: Three Rivers Press. A journalistic account of the disabilities civil rights movement in the United States that led to the passage of the Americans with Disabilities Act (1990).

Singer, Peter. (2001). "Response to Mark Kuczewski." American Journal of Bioethics 1(3): 55–57. Singer denounces the social jusice model of disability and a disability rights aproach to bioethics issues.

Wolbring, Gregor. (2003a). "Disability Rights Approach to Genetic Discrimination." In Society and Genetic Information: Codes and Laws in the Genetic Era, ed. Judit Sándor. Budapest: Central European University Press. Uses the three models (MP, SP, TP) together for the first time and shows that anti-genetic discrimination laws are discriminating against disabled people. Provides examples of disability discrimination within the usage of advances of human genetic interventions .

Wolbring, Gregor. (2003b). "The Social Construct of Health and Medicine." Health Ethics Today 13(1): 5–6. Looks at the social construction of health and medicine.

Wolbring, Gregor. (2003c). "Disability Rights Approach towards Bioethics." Journal of Disability Policy Studies 14(3): 154–180. Shows that the ethical divide that approves the prohibition of sex selection while allowing disability (MP) deselection is untenable. Questions the two-tiered ethical approach of medical versus social reasons

INTERNET RESOURCES

Harris, John. (2000). "Is There A Coherent Social Conception of Disability?" Journal of Medical Ethics 26(2): 95–100. Available from http://www.ncbi.nlm.nih.gov.

Penney, Jonathan. (2002). "A Constitution for the Disabled or a Disabled Constitution? Toward a New Approach to Disability for the Purposes of Section 15(1)." Journal of Law and Equality 1: 83–94. Available from http://www.jle.ca/files/v1n1/JLEv1n1art3.htm.

Penney, Jonathan. (2002). "A Constitution for the Disabled or a Disabled Constitution? Toward a New Approach to Disability for the Purposes of Section 15(1)." Journal of Law and Equality 1: 83–94. Describes different possible models and perception of disability and disabled people. Available from http://www.jle.ca/files/v1n1/JLEv1n1art3.htm

UNESCO. (2003). "Report of the IBC on Pre-implantation Genetic Diagnosis and Germ-line Intervention." UNESCO Publication SHS-EST/02/CIB-9/2 (Rev. 3) Paris, 24 April 2003. Available from http://portal.unesco.org./shs/en/file_download.php/1f3df0049c329b1f8f8e46b6f381cbd1ReportfinalPGD_en.pdf. This report sees disability totally within a medical framework. It advances the notion that preimplantation genetic diagnostic and germ-line interventions are ethically permissible if done for medical reasons. It denounces sex selection on the grounds that intervention is done for social reasons.