|Our Bodies, Ourselves|
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 na´ve 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.
From the vantage point of the disability model, the objection to selective abortion is ultimately related to how we define ourselves. As feminists have transformed women's sense of self, the disability community has reframed the experience of having a disability. In part, through developing a sense of community, we've come to realize that the stereotyped notions of the "tragedy" and "suffering" of "the disabled", result largely from the isolation and exclusion of disabled people from mainstream society.
Disabled people have in the past twenty-five years, gained an identity as a social and political group, and experience a growing but still precarious sense of pride in an identity as "people with disabilities." With decades of hard work, disability activists have fought against institutionalization, and discrimination, and fought for access to employment and education, transportation and housing. We have fought for Independent Living programs, and proven that disabled people can participate in and contribute to society.
In an era which offers access to improved health, longevity, social mobility, and a political voice for disabled citizens, it is ironic that the growth of the new reproductive and genetic technologies of the 1970s and '80s now provides the possibility of eliminating categories of people with certain kinds of disabilities, such as Down Syndrome, spina bifida, muscular dystrophy, sickle cell anemia and hundreds of other conditions. The central message from those who resist selective abortion is that there is something deeply valuable, and profoundly human, (though difficult to articulate in the sound-bites of contemporary thought) in meeting and loving a child or adult with a disability. The contributions of human beings cannot be judged by how they fit into the mold of normalcy, productivity, or cost benefit. Human beings "of difference" (whether of color, of ability, of age or of ethnic origin) have much to share with others about what it means to be human.
Reduced to a Gene
There is remarkable congruence in the writing about this issue coming from people with disabilities around the world. All these writers identify this theme: "These technologies make us feel devalued as human beings. For people with disabilities, "the message" that many disabled leaders believe is implicit in the practice of abortion based on genetic characteristics, is, "it is better not to exist than to have a disability. Your birth was a mistake. Your family and the world would be better off without you alive.
In this era we people with disabilities have fought hard for acknowledgment of our being worth whatever extra effort may be needed from our families and providers, and for recognition that our contributions are meaningful and significant. For many of us, it may have also taken effort to go ahead, despite the discriminatory attitudes, to get a job, to manage one's life despite the discrimination and the social barriers, to focus on what's true and what's possible. As disabled people, we, ourselves, have the task of realizing that our disabilities are not the defining factor that the oppressive assumptions have pointed to. Our disabilities are a part of ourselves, but really not that central in the totality of our being. And now we learn from genetic science that the particular characteristics, "the flawed part", that we fought against negative and learned stereotypes to accept, has now become the very factor identified by a technology as the excuse to eliminate potential people, people, who might turn out "like us."
When medical professionals present the diagnosis of a genetic disease condition to the parents, do they also remind parents that this baby would also still come with a full set of other human characteristics? When medical students or genetic counseling students are shown slides of babies or adults with genetic conditions, do we also remind these students that these individuals will carry other human traits such as love and affection, humor and joy? Emphatically not, consistent with the medical model of disability, the diagnostic test reduces the entire set of human characteristics to one-- the "flawed, imperfect" part.
With the example of racism we see that the whole complex, centuries-long history of fear of cultural difference, of white guilt at the horrors of slavery, of the economics of jobs and land, get projected onto one visible characteristic: dark skin. Analogously, we see this kind of unaware projection with prenatal diagnosis. The economics of dependence and interdependence underlying the "burden" of disabled people, the politics of caregiving and gender roles underlying caring for disabled children, the fear of human difference and vulnerability -- these all get reduced and projected onto one identifiable characteristic: a gene. We in the disability rights community resist the notion that our humanness can be evaluated and then reduced to a flawed gene.
It can be argued that the people with disabilities who are in a position to challenge mainstream cultural attitudes are an exceptional collection of people; educated, privileged, with an unusual degree of resource, and therefore not necessarily representative of the burdensome masses of disabled people. We would argue that we are exceptional as people with disabilities only in our confidence, our sense of ourselves as worthy human beings. We are privileged in having encountered and joined the community of other people with disabilities which offered us the unique resource to reflect on our position in society and to fight discrimination.
What changes do we disability rights activists want to accomplish regarding prenatal screening and selective abortion?. Simply put, we hope to educate genetics professionals, and other medical personnel and students to consider and learn from the views of the disability community, and to promote the inclusion of people with disabilities and their families as resource people and expert advisors, in policy development and clinical services.
We want to educate the general public about the social issues of disability, so that families can make informed and meaningful decisions about prenatal screening, as these technologies reach wider impact. We are beginning to gain a voice in a few of these arenas.
For example, the Brandeis University genetic counseling program has initiated a structured opportunity for their students to learn of the views of disabled people concerning the issues of prenatal diagnosis and selective abortion, by interacting directly with disabled people as mentors to the students, outside of a clinical setting.1. Several other genetic counseling master's degree programs abound the country are following suit.
People with disabilities, including the two authors of this piece, are finally being sought out as consultants and spokespeople to clinical genetics and to the media on this issue. In February of this year, Deborah Kaplan spoke on issues of disability identity to a national conference on asymptomatic genetic conditions. 2. In early May of 1998, National Public Radio aired a series of four hour-long radio shows on key disability issues, including one on genetic screening.3. That same week, "Talk of the Nation" featured Marsha Saxton and a clinical geneticist, Dr. Alan Gutmacher, interviewed by Ray Suarez, about the disability community's view of prenatal testing. These radio programs were broadcast all over the country to an estimated four million listeners, and are scheduled for rebroadcast again this spring, '99. Just a few years ago, some of us couldn't have imagined that the views of disabled people on this issue would reach this level of recognition. Our perspectives are important for the world to hear. We anticipate many more voices, both of our disabled peers and our non-disabled allies, joining us.
- Saxton, Marsha. "Disability Feminism Meets DNA: A Study of an Educational Model for Genetic Counseling Students on the Social and Ethical Issues of Selective Abortion" Doctoral Dissertation, The Union Institute, Cincinnati, Ohio, May 1996.
- Kaplan, Deborah, "Negative and Positive Effects of Being Considered Disabled Under the Americans with Disabilities Act," a presentation at an National Institutes of Health sponsored conference, "Bragdon Versus Abbott: Implications for Asymptomatic Genetic Conditions," February 19, 1999, Washington D.C.
- "Tomorrow's Children" a segment of "Beyond Affliction: The Disability History Project," Straight Ahead Productions, Inc. Box 395, Conway, MA, 01341.
Deborah Kaplan is the Executive Director of the World Institute on Disability (WID) in Oakland, CA. Marsha Saxton is a principal investigator at WID and a lecturer on Disability Studies at the University of California at Berkeley. For more information, contact us at WID, 510 16th Street, Suite 100, Oakland, CA 94612, 510-763-4100.