Against eugenics, and for a future that includes autistic and disabled people

Blogging Against Disablism Day 2017

In 1993, autistic advocate Jim Sinclair wrote “Don’t Mourn For Us.” It read “This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be… Don’t mourn for us. We are alive. We are real.” It appeared in the Autism Network International newsletter as an outline of a conference presentation they had given to parents of autistic children.

There are still many people and organizations who believe that autistics should be mourned for in life, rather than death; that there needs to be a way to find the ‘normal’ child who has been lost to autism, or prevent more autistic people from existing – cure culture. Cure culture creates dangerous dynamics, in which there is a strong focus on “fixing” autistic people, along with “battling” and “eradicating” autism. This culture also creates fear of autistic people and traits. One of the sources for the common cure culture we still see today lies in eugenics, a movement that gained popularity in the early 20th century.

It has been twenty-four years since “Don’t Mourn for Us.” We have made much progress. These include advances in representation, such as Julia the autistic Muppet and the company Apple putting out autism acceptance ads. Disability rights appeared on the political stage in a major way in 2016. The Autistic Self Advocacy Network, founded in 2006, has already become a significant player in national public policy. There have been pieces of legislation – like the 2010 Affordable Care Act – that benefit many autistic people, along with court rulings favoring disability rights and inclusive education. The Centers for Medicare and Medicaid Services issued an HCBS settings rule in 2014  that aims to give people with disabilities support in real community settings. Lindt Chocolate stopped donating money from their chocolate bunnies to Autism Speaks. And there are more victories, large and small, I could name.

But some of the largest autism charities in the nation, such as Autism Speaks, are still ones that reject advocacy by autistics, and some people still believe in discredited theories of causation and quack cures. But more disturbing is the eugenics ideology being seen in US politics, and around the public conversation on disability – an example being immigration restriction. The ideas behind eugenics say that behind the moral failings of people – and of society – there is a hereditary cause. Some people, supporters of eugenics argue, are “born to be a burden on the rest.” Conversely, supporters of eugenics also believe there are genetically and morally superior individuals.

As Sarah Jones writes for New Republic: “But eugenics, though discredited, has never been abandoned. In fact, the most powerful people in America appear to enthusiastically embrace the idea that humans can be divided into inherently superior and inferior specimens and treated accordingly… Of course, none of the people in Trump’s inner circle would describe themselves as eugenicists. They would call themselves capitalists, patriots, and Christians.” Examples include Trump’s statements on genetic superiority, Steve Bannon’s desire to “limit the vote to property owners,” and Jeff Sessions’ support for the 1924 Johnson-Reed Act – an immigration restriction law heavily influenced by eugenicists.

And Jones is right. Eugenics ideology is rampant, but I have not yet seen any political figures actually proclaiming themselves a eugenicist. Eugenics has a bad, discredited name to it now, and it’s more persuasive to masquerade under the guise of “Make America Great Again” then outright call oneself a eugenicist. It’s more convincing to cloak eugenicist views in words and actions that make people feel proud, to appeal to people using discriminatory views without ever saying one is endorsing eugenics.

As ASAN’s executive director Julia Bascom wrote for Slate about the Trump administration, disability, and the autistic community,

He sees my community as damaged goods. Recent reports indicate that, in addition to meeting privately with anti-vaccination groups, the Trump administration may convene a task force to relitigate the clear and settled science on this issue, potentially headed by noted anti-vaxxer Robert Kennedy Jr. Like so many of his policies, this isn’t just an issue of a lack of respect for people with disabilities—we cannot forget that this dishonest and unscientific nonsense has a body count.

This administration espouses eugenicist views. This administration buys into dangerous causation theories. This administration sees us as a public burden. Eugenicist views run through so much of the history of cure culture and causation.

Eugenics is a threat to the autistic and disability communities, and it is a threat to so many others.  This threat is palpable as the White House and Congress try to strip 24 million Americans, many of whom are disabled, of life-saving health insurance. It is clear in a leaked draft of an executive order targeting disabled immigrants and their families. We don’t know if Jeff Sessions’ Department of Justice will enforce the 1999 Olmstead ruling, which helps keep states moving toward community integration – along with the Medicare and Medicaid funding that is at risk. It is evident when the White House lights it up blue for Autism Speaks’ brand of awareness rooted in harmful rhetoric and support for causation research.

But, as ASAN’s statement on the White House lighting it up blue reads, “ASAN will not let our community be forced back to the too-recent time when the public consensus was that autistic people should not exist.” I’m with them. The autistic community, and the disability community, must fight as we are able to against eugenicist and discriminatory policies and attempted actions. We cannot go back to being seen as nothing but a collection of causation theories, damaged and broken and in need of “fixing.” And we must fight against any policies that promote prevention research, policies that tell us we should not be part of humanity’s future. Because we are part of the future.

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After Bell sterilized Carrie Buck, he was told “a hundred years from now… your descendants may well be proud.”

And other reasons Adam Cohen is wrong about eugenics and gene editing

On February 14, 2017, the National Academy of Sciences (NAS) and National Academy of Medicine (NAM) released a report entitled “Human Genome Editing: Science, Ethics, and Governance.” The report proclaimed that, with caution, limited clinical tests of genome editing should go forward. But human genome editing is controversial. Many international reports and laws support bans or limitations on genome editing.

The report departs from these internationally accepted ethics and laws, wrote the Center for Genetics and Society. (CGS). CGS is a science and bioethics group advocating “responsible uses and effective social governance” of human genetics. CGS put out official comments and a blog post on the report.  CGS also mentions the possibility of eugenics.

On March 17, 2017, Adam Cohen – author of Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck – began an op-ed in the Los Angeles Times with the words:

We entered a new phase as a species when Chinese scientists altered a human embryo to remove a potentially fatal blood disorder — not only from the baby, but all of its descendants…Last month, the scientific establishment weighed in. A National Academy of Sciences and National Academy of Medicine joint committee endorsed embryo editing aimed at genes that cause serious diseases when there is “no reasonable alternative.” …But the committee was also right to support limited embryo editing. This time around, eugenics could be a force for good.

He concludes the op-ed with:

Again, that need not be a bad thing. Twentieth century eugenics has rightly been called a “war on the weak” — its goal was to stop people with conditions like Huntington’s disease from reproducing. Twenty-first century eugenics can enable people with the Huntington’s gene to have children without it. The new eugenics can be a war for the weak.

Cohen’s op-ed, as disability rights journalist David Perry notes, “seems to miss the lessons of the history he synthesizes in his book… Any eugenic gene editing process that is constructed in our culture will reflect the ableist reality in which they are created.”

Further, Cohen misses several other points.

Eugenics was not just state-sanctioned sterilization. Eugenics was not just about preventing “the unfit” from having children. It was, and is, also about immigration, “racial purity,” and eliminating the “mentally defective” population through any means – whether by institutionalizing people judged as such, sterilizing them, preventing their marriage, or in the case of the Nazis, also murdering them.  Eugenicists were not worried about the people with any kinds of hereditary conditions, real or perceived, and far more keen on eliminating the “threat” to the sanctity of American society and economics.

Cohen asks the question if eugenics can be used for good. A colleague told Dr. John H. Bell after Bell sterilized Carrie Buck, “a hundred years from now you will still have a place in this history of which your descendants may well be proud.” Eugenicists believed they had the superior knowledge to know what was best for society, doing public good, based on pseudoscience and their own intensely biased beliefs. They believed future generations would be proud of their work – future generations that contained no “mental defectives,” generations that had been altered by them.

Cohen said “yes” in answer to his question, that the new eugenics can be for people with genetic conditions – that eugenics can be used for good. But he acknowledges that future generations would be permanently altered.

There is no such thing as good eugenics, and Cohen misses that point by a wide mark.

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.”)