Pregnancy & Birth
Prenatal Testing and Disability Rights
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.
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