We need to name some modern practices as eugenics – and don’t

How this failure to name eugenics – and then condemn it as such – has resulted in a growing acceptance of renewed efforts to “better humankind”

An article on Germany’s renewed efforts to document Nazi-era medical experimentation and murders of disabled people came out recently without ever mentioning the word eugenics. Published on January 5, 2017, the American Association for the Advancement of Science’s Science Mag titled the piece “Germany to probe Nazi-era medical science.” The phrase “medical science” is too kind for murders rooted in a eugenics movement – and eugenics is not “medical science.”

I am pleased that Germany is doing a probe and that this is getting coverage in a science magazine with such detail, as eugenicists claimed scientific and medical evidence as their rationale. I am less so that they didn’t name eugenics. The article’s word choice got me thinking about eugenics in the past and modern eugenics. If you don’t name eugenics as such, it’s that much harder to recognize today.

Many people I know agree eugenics was a movement that happened in history, and name it in articles and other writing. But I have not seen as many people discussing eugenics practices happening in recent years and today. As a society – with some exceptions – we don’t call many actions eugenics or discuss the perils of eugenics practices occurring in them.

  • We don’t call it eugenics when prenatal testing in order to avoid having disabled children – particularly those with Down Syndrome – happens.
  • We don’t call it eugenics when disabled people receive the recommendation that they should not have a child because they have a disability.
  • We fail to discuss eugenics beliefs behind the removal of children from disabled parents on the basis that they are “unfit to parent” due to disability.
  • We don’t call it eugenics when many states still have sterilization laws on the books and when Buck v. Bell has never been overturned in its entirety.
  • We don’t call it eugenics when disabled people are still sterilized “for their own protection” in many countries, such as Australia. 
  • We don’t call it eugenics when discussions of “designer babies” that are “perfect” – meaning, to many, without any form of disability – occur.
  • We fail to discuss eugenics when talking about human genomics and gene-editing programs, such as CRISPR.

Yet these are rooted in eugenics, with the belief that disability is unacceptable and bad.

Joan Hume, a woman with a disability, wrote in 1995 about the “new eugenics,” prenatal testing, and having disabled children, “The message about disability is loud and clear: the prospect of having a disabled child is not acceptable for many prospective parents…. With the emphasis on “perfect babies” the message of the new technologies is that disabilities can and must be weeded out by eliminating foetuses with certain defective traits. This is clearly a modern version of the earlier eugenics perception that disability is inherently bad.”

And eugenics is, indeed, inextricably linked with the concept that disability is bad – regardless of whether the practices target non-disabled people or not. Eugenics tells people that disability and failure to conform to mainstream society’s expectations and rules are bad. Eugenics is ultimately rooted in  intertwining sets of bigotry: racism, sexism, classism, ableism, and more forms of oppression, using disability, “abnormality,” and “defects” to explain practices such as involuntary sterilization of any marginalized person.

The popular American eugenics movement of the Progressive Era past had eugenicists positing that intelligence and moral “defects” in the “feebleminded” people were passed down like Mendel’s peas generation by generation, using the growing field of genetics, the myth of the “feebleminded menace,”  and “fitter families” contests to make it plausible and acceptable to society. They twisted scientific concepts and used new scientific discoveries and theories of science to make it sound exciting to Progressive-era society – and they also capitalized on public fear and worry about poverty, race, immigration, and disability.

In many ways, it had legitimacy among many – eugenicists testified before Congress on immigration restrictions as “experts” in the years before and during World War II, many states had sterilization laws, and the Supreme Court affirmed a Virginia eugenics sterilization law 8-1 in 1927. In several ways, it did not. Some eugenicists’ careers in eugenics ended early due to the growing negative response from the public. Some prominent scientists decried eugenics as pseudoscience. And eugenicists in that era failed to see their ideas of sterilizing every “feebleminded” person fully implemented on a massive, national scale. 

Unlike the eugenics of the past, eugenics today – from what I’ve seen – is generally cloaked in scientific legitimacy, using real science like CRISPR and gene editing and genomics. Like the eugenics of the past, a lot of people still have fear and other negative, oppressive beliefs regarding poverty, race, immigration, disability, and more. Like the eugenics of the past, is is presented as exciting new scientific discoveries.  And that makes it just as terrifying, if not more.

(ETA: a good resource to follow is Genetics and Society, “a nonprofit information and public affairs organization working to encourage responsible uses and effective societal governance of human genetic and reproductive technologies and other emerging technologies.”)

2016 was lighting candles to mourn, but it was also carrying torches high

Year in Review: 2016

 Disability Rights, State of the Blogger, and Looking Ahead to 2017


  • Progress in 2016
    • #CripTheVote and disability on stage in U.S. politics
    • Disability Intersectionality Summit
    • Other moments in disability rights
  • State of the Blogger
    • Overview of the blogger’s 2016
    • Looking at, and valuing, disability and autistic history
    • Top five viewed posts and pages
    • Posts and pages that I liked but had fewer views
  • Looking Ahead
    • 2016 as an atypical year and the blogger’s plans for 2017
  • Conclusion

Progress 

#CripTheVote and disability on stage in U.S. politics

cripthevote-2

The logo of #CripTheVote, designed by Mike Mort. Blue text reads: #CripTheVote. There is graphic-design image of a voting ballot box with a ballot being dropped in. The ballot box has four blue squares, with line art in white of the standard wheelchair user disability icon, a brain, a pair of hands signing, and a person walking with a cane.

 

In 2016, Alice Wong (Disability Visibility Project, which chronicles disability stories), Andrew Pulrang (Disability Thinking blog and Center for Disability Rights), and Gregg Beratan started #CripTheVote, which is

a nonpartisan campaign to engage both voters and politicians in a productive discussion about disability issues in the United States, with the hope that Disability takes on greater prominence within the American political landscape. We hope to encourage people with disabilities to engage with the election at all levels from President on down, and to vote. We also want to hear candidates engage with disability policy issues and disabled people as much as possible.

They hosted Twitter chats, provided resources to disabled voters, and sparked a more organized engagement with politics from the disability community. It brought disability to the stage of politics in a major way, and enabled disabled people to have a central platform to organize around and put their resources and news.

Hillary Clinton released an autism plan and announced support of the Disability Integration Act after an autistic person stood up and asked if she supported it, leading to then-candidate Bernie Sanders co-sponsoring the bill. Then at the Democratic National Convention, a disabled person – disability rights activist Anastasia Somoza – took the stage. 2016 was the year, as Dylan Matthews writes, that disability rights broke through in national politics and disabled people became seen as a constituency by politicians.

Disability Intersectionality Summit

This year, the Disability Policy Consortium accepted proposals and held a Disability Intersectionality Summit. Presentations included topics on the intersections of being undocumented, being LGBTQ+, being a person of color, having mental health disabilities, on #DisabilityTooWhite – the hashtag and movement around the the disability community’s failure to represent racially diverse voices – and more. It was held in Boston on November 5.

Other moments in disability rights include: 

Disability rights groups struck a major blow to sheltered workshops.  Maryland voted to end subminimum wage. An investigation has finally opened into Illinois’ group homes for disabled people. A major Minnesota job provider for disabled people agreed to reform its hiring practices. Michigan banned non-emergency restraint and seclusion for disabled students. Georgia’s governor spoke in favor of Employment First policies for disabled people in Georgia.

The FDA finally put out a proposed rule for banning contingent electric shock devices like those used at the Judge Rotenberg Center. A major case involving a girl and her service dog went before the Supreme Court, and could open up an easier path for disabled students and their families to make schools comply with various laws. Litigation against Georgia’s substandard, segregated “education” system called GNETS for students with disabilities by the Department of Justice moved forward.


State of the Blogger

Overview of the blogger’s 2016

It was a hard year, like it was for many. I spent a serious amount of time dealing with badbrains. I wrote about the dehumanization of psychiatric wards here. I adopted a cat, though, so that makes up for a lot of things.

In terms of other advocacy, I continued volunteering for a non-profit’s social media that I have done since 2015. I also kept working for a non-profit that I been with since December and continued to blog. I began work on a great number of blogging projects like Autistic Community on Medium, and Welcome to the Autistic Community on Tumblr. I also ran Autistic History Month this year.

I also decided to turn my life experiences and history research into writings for publications and have published with the Establishment and the Deaf Poets Society on institutionalization and psychiatric wards, eugenics history and Buck v. Bell, and my experience with housing in college.

Looking at, and valuing, disabled and autistic history

In addition I have been working on my disability history/eugenics history blog more. I revamped my eugenics history 101 post into a downloadable PDF. and updated the resources list for that blog. I worry a lot about eugenics as a popular movement being back full force – it’s still here, in some areas and ways.

I also ran the Autistic History Month blog this year; a link compilation for autistic history can be found here and the posts for 2016 here. As Sarah Pripas-Kapit and I remarked in the closing post for Autistic History Month, history is essential to working for change today:

Thank you for furthering the knowledge of autistic history, and showing that we have a history. I am the first to admit that I don’t know everything about autistic history… Knowing history is vital, especially in this time of turmoil for many. Knowing autistic, and other disability history, is vital. If we don’t know how we organized and formed communities in the past, it’ll be harder to organize and sustain community now. -Kit Mead

It can be tempting to believe that history is an upwards trajectory, with things always getting better and better. Historians call this the “Whiggish view of history.”

Yet the Whiggish view of history oftentimes is not supported by evidence… While the past ten years has been a period of progress for the autistic community, I fear that we may be heading into a period of regression. As so many others have said, the election of Donald Trump to the presidency is looking to be disastrous for people with disabilities. Like many of you, I am concerned about the months and years to come.

History tells us that civil rights are never a done deal. We have to work continually to uphold them.

But I hope that history can also provide hope. We are not the first generation of disabled people to face an ableist state and rollbacks of progress. By looking to the past, we can find a way forward during these turbulent times. -Sarah Pripas-Kapit

Top five viewed posts and pages

Posts and pages that I liked but had fewer views


Looking Ahead

2016 as an atypical year and the blogger’s plans for 2017 

Like s.e. smith says, 2016 was not normal and therefore, we should not allow ourselves to long for 2016 and make it a crowning glory of years that we look back to sometime in the middle of 2017 and go “well, things were so much better then!”

I really recommend reading the post by s.e. smith for how we cannot normalize 2016 because it wasn’t normal. We lost a lot in 2016 and our state of politics has steadily descended into even more chaos than usual. It’s not like I particularly look forward to the next several years’ potential events, but I will take a lot of pride in being alongside many other great activists, working to keep what progress we have made.

In 2017, I will continue to update my post-election resources page and continue my advocacy work, sharing and disseminating resources. I will continue to blog about the things that mattered before this election, and will blog on the things that matter more now because of the election.


Conclusion

2016 may have been holding candles up against a darkening sky in mourning, but it was also keeping candles lit and torches high against rain and darkness. We made a lot of progress in many different areas, and we also lost a lot – but we have faced dark times before, though never like this. We will work against the rapidly encroaching darkness of night to be lighthouses in the fog and darkness for many ships. Torches held high, we face 2017 and the years to come.