Future Past: Disability, Eugenics, & Brave New Worlds
A public symposium called Future Past: Disability, Eugenics, & Brave New Worlds, held on November 1 at San Francisco State University, provided a rare and important opportunity to engage with the historical and ongoing implications of eugenic ideologies and practices for people with disabilities. The day-long event was co-organized by the Center for Genetics and Society, the Paul K. Longmore Institute on Disability, Living Archives on Eugenics in Western Canada, and Facing History and Ourselves.
More than a hundred participants of diverse backgrounds and disciplines heard presentations from three panels, took part in facilitated small-group discussions, and watched a sneak-preview screening of a new documentary.
A number of questions inspired and illuminated the day: Why do the legacies and implications of eugenics matter now? How can we address them in teaching and pedagogy, in policy and activism, and in art? What are the social and ethical consequences of omitting eugenics from historical memory or misrepresenting it? What is the price of the pursuit of "human betterment" for reproductive and disability justice? What is being done – and what can be done – to increase understanding of the legacies of eugenics?
The participants were welcomed by SFSU Provost Sue Rosser and Catherine Kudlick, Director of the Longmore Institute. The symposium's three panels then framed the day:
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WHAT? Eugenics and Disability, Past and Present
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SO WHAT? The Consequences of Misremembering Eugenics
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NOW WHAT? Looking Ahead to Brave New Worlds
At the end of each panel, everyone took part in structured table discussions, which served to introduce the participants and to broaden each person's appreciation of the topics covered. These were based on engaging materials introduced by Milton Reynolds and provided by Facing History and Ourselves.
WHAT? Eugenics and Disability, Past and Present
Eugenics is based on the belief that certain lives are more valuable than others and that those with "higher" value should be encouraged to survive and reproduce while those with "lesser" value should be encouraged (or forced) not to. It takes for granted normative notions of value, humanity, and normality. And it assumes that people with disabilities have no place in this picture, that they are merely a problem to be fixed or erased. Future Past offered a chance to push back against this harmful ideology and worked to re-inscribe disability as a generative force, as another kind of human experience that has much to teach the world.
The long and tangled history of eugenics involves uncommon bedfellows, with many progressives supporting it under various guises at different times. High school students in the United States often learn about the Holocaust as though it were the beginning and end of eugenics, and even many adults are unaware that twentieth-century eugenic laws in the United States resulted in the forced sterilizations of tens of thousands of people. These abuses had a disproportionate impact on communities of color, people living in poverty, and people with disabilities.
Glenn Sinclair bravely recounted his own harrowing experiences of growing up in Alberta, Canada's Provincial Training School, an institution for mentally disabled children and adults. He talked about being sterilized as a child, against his will, and recounted feeling as though he had nothing, that he was no more than an animal. But he has been fighting against this enforced invisibility through sharing his story. He said, "We're all humans on this Earth. We all have our place."
Nicola Fairbrother, the Director of Neighborhood Bridges, expanded on the Canadian history and noted some of the international connections. For example, she shared that the South African apartheid regime actually utilized some of the Canadian eugenics laws. Marcy Darnovsky, Executive Director of the Center for Genetics and Society, made connections between historical abuses of the past and technological advances of the present.
For instance, the rise of genetic testing for embryos and fetuses to "screen out" genetic "abnormalities" sends the message that certain lives are a mistake, to be avoided if possible. These technologies threaten to bring about a new era of eugenics, guided by individual choices, but within a framework of particular social expectations. The availability of these tests has already greatly reduced the number of people in the world with Down syndrome, for example, and the marketing of non-invasive prenatal diagnoses sold with the rhetoric of health, choice, and information is bound to whittle this number down further. If technologies such as whole genome sequencing are offered in the future it will not only provide the allure of a healthy baby, but also of a "better" baby. We will be forced to contend with the complex terrain between reproductive rights and disability rights as these technological advances forever change the nature of pregnancy, knowledge, and power.
The medical language of "cure" and "fixing" is pervasive in our society today, but the disability rights movement is burgeoning and now has an opportunity to fight back against harmful notions of "pure science." Technologies intended to eliminate groups of people are not neutral or merely a matter of personal autonomy, but are informed by particular ideologies of the time and have a profound impact on the larger tapestry of humanity. As medical historian Alexandra Minna Stern put it, "today's science is tomorrow's pseudo-science."
Stern argued that what is needed now is a position that engages both reproductive justice and disability rights, a position that fights for the inclusion of a social model of disability where improved access to resources to help families make informed decisions and maintain a high quality of life are given priority. In her words, "it's a kaleidoscopic-type of map that we need." Future Past helped us all to shade in some of that map.
SO WHAT? The Consequences of Misremembering Eugenics
What are the implications of misremembering this problematic history? Of failing to see the implications of current practices and technological advances? Marsha Saxton, professor of Disability Studies at UC Berkeley who worked on the ELSI project for the Human Genome Project warned of the covert institutionalization of eugenics, as well as offering some of her own personal testimony as a person with spinal bifida.
Troy Duster, Chancellor's Professor at UC Berkeley, asked participants to consider the conditions under which a society makes decisions about who can have a child. He argued that our own era's disruptive socio-economic transformations, and the appeal of political ideologies that categorize people as "makers" or "takers," may be creating "fertile soil" for the growth of new eugenic sensibilities.
Rosemarie Garland-Thomson, professor of Women's Studies at Emory University, argued that eugenics has always been a utopian effort to supposedly control and improve the social order. But, she said, there is an increasingly persuasive counter argument. She mentioned disability rights advocate Harriet McBryde Johnson, whose Too Late to Die Young asserted that "the presence or absence of a disability doesn't predict quality of life."
Rob Wilson, professor of Philosophy at the University of Alberta and principal investigator of Living Archives on Eugenics in Western Canada, argued that reparations can be an important tool for redressing past wrongs, not merely for the ways in which they can ease the suffering of survivors, but because they can force other people to engage with the issues and to see their own connections to difficult histories.
NOW WHAT? Looking Ahead to Brave New Worlds
Moving forward, it is important to understand that the history of eugenics does not begin and end with Nazis and the Holocaust. This limited view can cover up the pervasiveness and even the banality of eugenic ideas, which continue to devalue the lives of women, people with disabilities, ethnic and racial minorities, LGBTQI communities, and people of low socio-economic status through the normalization of practices such as coercive sterilization and prenatal genetic testing. Presenters and participants suggested a number of different ways we can move forward, using this knowledge to advocate for a more inclusive future.
Milton Reynolds of Facing History and Ourselves argued that the process of transitional justice requires multiple intersectional levels of reform: educational, institutional, cultural, social and judicial. He noted that classrooms and teachers will play an important role in creating new frames for thinking about these issues and in allowing the clear vision of hindsight to elucidate contemporary situations.
Patricia Berne, co-founder and director of Sins Invalid, a performance project that "incubates and celebrates artists with disabilities," encouraged engaging with disability through creative means and viewing it within a social justice context. She stated, "if we can't engage our political imagination than we certainly aren't going to have a policy that reflects something liberatory."
Lick-Wilmerding High School teacher Kate Wiley discussed the importance of engaged involvement with young people. She shared an online petition at change.org that her students have created, which asks the Governor of California to include California's history of eugenics in state textbooks. (Check it out – they still need more signatures!)
Gregor Wolbring, Associate Professor of Disability Studies at the University of Calgary, skyped into the conference and brought the issue of human enhancement and germline engineering into the discussion. He argued that these technologies are a form of positive eugenics, based on the same ideologies of ableism that are inherent in negative forms of eugenics such as sterilizations.
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A pre-release screening of the film FIXED: The Science/Fiction of Human Enhancement, and a discussion with producer and director Regan Brashear at the end of the day, brought this point home further. The film provided provocative material with which to question how technology fundamentally alters notions of normality and ability.
Many things may come out of the Future Past symposium: connections between people of diverse ages, backgrounds, and disciplines; improved understanding and knowledge of resources for people working on these issues in various formats; and increased momentum for engaging more deeply with these issues. Through a better understanding of histories of intolerance, ignorance and eugenics, we may become more adept at contextualizing the present, and advocating for a more humane future.
As Emily Beitiks, Assistant Director of the Paul K. Longmore Institute on Disability, said at the end of the day, hopefully in the future we will not need to hold a conference to make the argument that certain people have the right to exist.
Previously on Biopolitical Times: