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The Politics of Women's Health

Prenatal Testing and Disability Rights

Disability Community and Identity: Perceptions of Prenatal Screening

by Deborah Kaplan and Marsha Saxton  

People with disabilities come to the genetic screening debate from a perspective that perplexes many scientists and medical professionals. We are purportedly the ones helped by genetic advances, yet we are critical of much of the research. Those with disabilities who have lived their lives creatively managing the logistics of a disability, as well as fighting disability discrimination, may regard the new genetic "options" as a way to promote selective abortion. In an attempt to "eliminate disability," medical science may harbor motivations that spur the prenatal technologies in the direction of eliminating disabled people before they are born rather than addressing fundamental social causes of disability discrimination and the resulting lowered socio-economic status of citizens with disabilities.

This article explores the social origins of disability discrimination and its implications for prenatal diagnosis, and examines some of the objections to screening expressed by people with disabilities.

Definitions of Disability

Disability policy scholars describe four different historical and social models of disability: (1) A moral model of disability which regards disability as the result of sin; (2) A medical model of disability which regards disability as a defect or sickness which must be cured through medical intervention; (3) A rehabilitation model, an offshoot of the medical model, which regards the disability as a deficiency that must be fixed by a rehabilitation professional or other helping professional; and (4) the disability model, under which the problem is defined as a dominating attitude by professionals and others, inadequate support services when compared with society generally, as well as attitudinal, architectural, sensory, cognitive, and economic barriers, and the strong tendency for people to generalize about all persons with disabilities, overlooking the large variations within the disability community.

The moral model is historically the oldest and is less prevalent today. However, there are many cultures in the world and sub-cultures in the United States that associate disability with sin and shame, and disability is often associated with feelings of guilt, even if such feelings are not overtly based in religious doctrine. For the individual with a disability, this model is particularly burdensome. This model has been associated with shame on the entire family with a member with a disability. Families have hidden away the disabled family member, keeping them out of school and excluded from any chance at having a meaningful role in society. Even in less extreme circumstances, this model has resulted in general social ostracism and self-hatred.

The medical model of disability came about as “modern” medicine began to develop in the 19th Century, along with the enhanced role of the physician in society. Since many disabilities have medical origins, people with disabilities were expected to benefit from coming under the direction of the medical profession. Under this model, the problems that are associated with disability are deemed to reside within the individual. In other words, if the individual is “cured” then these problems will not exist. Society has no underlying responsibility to make a “place” for persons with disabilities, since they live in an outsider role waiting to be cured.

The individual with a disability is in the sick role under the medical model. When people are sick, they are excused from the normal obligations of society: going to school, getting a job, taking on family responsibilities, etc. They are also expected to come under the authority of the medical profession in order to get better. Thus, until recently, most disability policy issues have been regarded as health issues, and physicians have been regarded as the primary authorities in this policy area.

The rehabilitation model is similar to the medical model; it regards the person with a disability as in need of services from a rehabilitation professional who can provide training, therapy, counseling or other services to make up for the deficiency caused by the disability. Historically, it gained acceptance after World War II when many disabled veterans needed to be re-introduced into society. The current Vocational Rehabilitation system is designed according to this model.

Persons with disabilities have been very critical of both the medical model and the rehabilitation model. While medical intervention can be required by the individual at times, it is naïve and simplistic to regard the medical system as the appropriate locus for disability related policy matters. Persons with disabilities chronic medical conditions which may never be cured are quite capable of participating in society. The practices of confinement and institutionalization that accompany the sick role are simply not acceptable.

The disability model has taken hold as the disability rights and independent living movements have gained strength. This model regards disability as a normal aspect of life, not as a deviance, and rejects the notion that persons with disabilities are in some inherent way “defective”. Most people will experience some form of disability, either permanent or temporary, over the course of their lives. Given this reality, if disability were more commonly recognized and expected in the way that we design our environments or our systems, it would not seem so abnormal.

The disability model recognizes social discrimination as the most significant problem experienced by persons with disabilities and as the cause of many of the problems that are regarded as intrinsic to the disability under the other models. The disability rights movement is working towards a society in which physical and mental differences among people are accepted as normal and expected, not abnormal or unusual. We have plenty of methods and tools at our disposal to accommodate human differences should we choose to. Ironically, the growth of technology in our lives provides us with both the ability to detect more human differences than ever before, as well as the ability to make those differences less meaningful in practical terms. How we react to human differences is a social and a policy choice. We prefer to advocate for a social structure that focuses on including all people in the social fabric, rather than drawing an artificial line that separates “disabled people” from others.

The Community of Disabled People

If persons with disabilities are perceived as individuals who encounter insurmountable difficulties in life and who place a burden on society, prenatal screening may be regarded as a logical response. However, if persons with disabilities are regarded as a definable social group faced with great oppression and stigmatization, then prenatal screening may be regarded as yet another form of social abuse. This is the essence of the disability community’s challenge to prenatal genetic testing. We believe that the current promotion and application of prenatal screening has a potent message which negatively affects people with disabilities, influences women in decision-making about their own pregnancies, and reinforces the general public’s stereotyped attitudes about people with disabilities. We worry that these negative attitudes might result in public policies or practices, such as job discrimination, barriers to obtaining health insurance coverage, cutbacks on public support programs, and other similar negative actions.

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