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.

A history of progressive ableism that remains today

For clarity: I know that other progressive activists do great work. This is an anti-ableism post. It should be interpreted in this manner rather than as anti-progressive. 

Introduction

Too often, progressives use ableism to accomplish their goals. I do not mean just using some words that many disabled people consider offensive.  I mean things like advocating for ableist gun reform laws. I also mean things like attributing people’s worst traits to mental health disabilities, like people do with Trump.

In the 20th century, progressives gained momentum. Progressives of this time were not the same as they are today, but the ableism is still around.  Then, the cause to rally around was eugenics. I am providing eugenics as a historical example of progressive ableism – and will point out how it still lurks in undertows of thought.

Historical example: The early 20th century and Progressive Era eugenics

Eugenics was a movement that gained some level of popularity in the early 20th century (and still continues in modern forms today). Supporters of eugenics wanted to prevent the procreation of the “unfit” and promote “better breeding.” Eugenics was popular with progressives, including reformers and activists, of the early 20th century.

The Eugenics Record Office (ERO), intended to serve as a hub for American eugenics research, was financed at one point by the Carnegie Institution. Teddy Roosevelt once wrote a letter to eugenicist Charles Davenport of the ERO about “degenerates” that said:

Farmers who permitted their best stock not to breed, and let all the increase come from the worst stock, would be treated as fit inmates for an asylum. Yet we fail to understand that such conduct is rational compared to the conduct of a nation which permits unlimited breeding from the worst stocks, physically and morally… Someday we will realize that the prime duty… of the good citizen of the right type, is to leave his or her blood behind him in the world; and that we have no business to permit the perpetuation of citizens of the wrong type.

A reformer included Victoria Woodhull, a suffragist known for being the first woman to run for president (in 1872). Another was inventor Alexander Graham Bell. Several groups of feminist reformers, including the National League of Women Voters, had eugenics-based legal reform as part of their goals.

Stop making me have to defend insidious people from ableism

Bigoted actions and words from Trump are the result of bigotry. And bigotry is not a mental health disability, though people with mental health disabilities can also be bigots. We are people and vary in thoughts and opinions. But I’d really like prominent progressive activists to acknowledge this and stop making the case for Trump being crazy. That way, people with mental health disabilities won’t face as much ableism. And I won’t have to keep defending insidious people from ableism. 

I defend even people I loathe from ableism because public figure he may be, but attributing bigotry to disability hurts all people with mental health disabilities. And I do it also because when progressives pull out the “But no sane person would do that!” or “Trump is crazy!” lines, this is what they are saying:

Only crazy people can be responsible for such vile acts.

It’s the line of thinking that mental health disability must be responsible for acts society can’t explain, acts society considers terrible. The unintentional undertones of this speak of eugenics to me. Eugenicists of the past posited that many people, especially marginalized people, had increased rates of poverty and crime due to mental and moral “deficits.”

Today, mental health is blamed for everything, from mass shootings to having a poor moral compass – and Donald Trump’s actions and bigotry. Right-wingers and the GOP are the party of eugenics themselves, for sure, and I find that loathsome. But progressives should stop blaming mental health as they oppose damaging policies and actions.  

Related Posts:

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.”)

Actions, Articles, and Statements on Sagamihara, Japan

This is a compilation of actions to take, such as vigil-attending, articles, and statements on the murder of 19 disabled residents and injury of 26 more at an institution for people with intellectual and developmental disabilities (Tsukui Yamayuri En) in Sagamihara, Kanagawa, Japan. We do not know their names because there is a refusal to release them. The reasoning behind this is that families do not want to have them named as people with disabilities.

Filed under eugenics as well as ableism and disability because killer held eugenics ideals.

Last updated August 19, 2016.

VIGILS FOR SAGAMIHARA

None upcoming that I have located

ARTICLES I HAVE LOCATED ON SAGAMIHARA BY DISABILITY RIGHTS ADVOCATES

BEGIN TRANSCRIPTION.

“Japan National Assembly of Disabled People’s International (DPI-Japan)

office@dpi-japan.org

URL: http://www.dpi-japan.org

Statement to Protest Knife Killing of People with Disabilities Sagamihara, JAPAN

Midori Hirano

Chairperson, DPI-JAPAN

We, DPI-JAPAN, work with cross-disability populations to advocate for society where people with and without disabilities can live equally. DPI-JAPAN is the organization of people with disabilities and has 91 affiliates across Japan.

The tragedy of the knife killing occurred on July 26, 2016, at institution for persons with disabilities in Sagamihara city. We express our deepest condolences to the victims who lost their lives and sympathy to those who were injured.

Many details were unclear till further investigation. However, some media reported that the suspect entered the institution during the midnight and attacked. There was also a report that the suspect was saying that “It is better OFF without people with disabilities” to the Kanagawa Police investigation. If this was true, the act is purely caused by the eugenics that questions the existence of persons with disabilities and other minority groups. We, DPI-JAPAN, reaffirm our commitment to fight against eugenics with great anger and grief.

During recent years, there are increased incidents of hate crime and hate speech against persons with disabilities and other minority groups. This particular incident should not be overlooked. Now, more than ever, the need to create a society which does not allow hate crime or hate speech.

Since the ratification of the Convention on the Rights of Persons with Disabilities in 2014 and the effectuation of the Act for Eliminating Discrimination Against Persons with Disabilities in April this year, there have been many efforts put in to create inclusive society that does not divide people whether having disability or not.

We will commit ourselves without falter to ensuring the life and dignity of persons with disabilities are protected and to be able to exercise their rights.

Lastly, there were some media reporting of history of hospitalization of the suspect. However, we request media to refrain from reporting the unconfirmed facts which only increase prejudice and prejudgment.”

END TRANSCRIPTION.

The Real Tragedy of Eugenics and a Primer on Buck v. Bell

Many of the victims were, like Carrie [Buck], perfectly normal both mentally and physically–and they desperately wanted to have children.

-Adam Cohen, Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck

The tragedy of eugenics is not that it happened to ostensibly non-disabled people. The tragedy of eugenics is that it happened at all. The tragedy of eugenics is that people used the prospect of disability to justify it. The tragedy of eugenics is that anyone, disabled or not, lost their right to choose if they wanted children. They used the prospect of disability to justify sterilizing anyone they saw fit – disabled people, people of color, sex workers, women, low-income people, or a combination of those, for the most part.

Cohen is not alone in asserting Carrie Buck, the subject of the 1927 Supreme Court case Buck v. Bell, was mentally “normal.” Journalist Harry Bruinius discusses it in his book Better for all the World. Paul Lombardo has many words to say about Carrie Buck’s normality as well as that of her daughter Vivian’s in his book Three Generations, No Imbeciles. The Sterilization of Carrie Buck  by J. David Smith and K. Ray Nelson talks about Carrie Buck’s family being actually normal.

Cohen is not alone in therefore implying that there was a correctly targeted group. That Carrie Buck’s sterilization was wrong because she was “normal” and should never have been in the Virginia Colony for Epileptics and the Feebleminded. In one regard, he is correct. Carrie Buck should never have been in that institution. Neither should anyone else have been.

.  .  .

Carrie Buck was born in Charlottesville, Virginia, in 1906. Eugenics took hold as Carrie grew up. Her father Frank was dead, or had simply left – no one knew. Her mother Emma took to the streets and got put on charity lists to try and take care of her children. Emma may have had substance abuse issues with drugs. Emma sometimes went to having sex with different men to try and make ends meet. She had more children. A family called the Dobbses took Carrie from Emma when Carrie was three or four. Emma Buck eventually was put in the Virginia Colony. When Carrie was seventeen, the Dobbses’ nephew Clarence raped her. A pregnancy resulted. The Dobbses wanted to avoid scandal. They packed her off to the Virginia Colony as “feebleminded” after she gave birth to a girl, Vivian. Facts of the case were not observed. 

The superintendent chose Carrie Buck for a test case of Virginia’s new sterilization law. Carrie went before the board of the institution. They voted to sterilize her. Her appointed guardian filed an orchestrated appeal. It was not really on her behalf. The appeal traveled through all the court systems until it reached the Supreme Court.

Buck v. Bell was a devastating decision by the Supreme Court. The 8-1 decision – the only dissenting member Justice Pierce Butler – said that it was legal to sterilize Carrie Buck, a patient at the Virginia Colony for Epileptics and the Feebleminded. They said it was legal to sterilize people, mostly those in institutions, without their consent. It upheld the Virginia law that had passed three years earlier. Justice Oliver Wendell Holmes, Jr., wrote this infamous statement in the opinion: 

It is better for all the world, if instead of waiting to execute degenerate offspring for crime or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes. Three generations of imbeciles are enough.

Buck v. Bell was an injustice done to Carrie Buck. It would have been if it were proven today she actually had an intellectual or developmental disability. It was an injustice to the tens of thousands of people, mostly in institutions, who came after her. It was an injustice to the women in the California prisons who underwent forced sterilization as recently as 2014, and to the women who went before a Tennessee district court prosecutor who forced plea deals involving sterilization. Buck v. Bell has never been overturned in its entirety, permitting legal loopholes. People are still being sterilized today, in the United States and elsewhere.  It is not considered a priority to overturn Buck v. Bell in its entirety. State eugenics laws were not overturned until the 1970s and 80s.

Buck v. Bell reached beyond the borders of the United States. The Nazi Party cited it as justification for some of their war crimes. They drew upon American eugenic ideals. United States officials acted as the primary agents in prosecuting Nazi officials, doctors, and others. Despite its association with Nazism, eugenics is not dead. Nor is its height and prominence a distant memory.

.  .  .

I encourage you to read the following if you have access to them. Sources to think about, and sometimes critique:

Books that Cost

  • The Nazi Connection by Stefan Kühl
  • Better for All the World: The Secret History of Forced Sterilization and America’s Quest for Racial Purity by Harry Bruinius
  • In the Name of Eugenics by Daniel Kevles
  • The Sterilization of Carrie Buck by J. David Smith and K. Ray Nelson
  • Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck by Adam Cohen
  • Three Generations, No Imbeciles by Paul Lombardo
  • War against the Weak: Eugenics and America’s Quest to Create a Master Race by Edwin Black
  • A Century of Eugenics in America: From the Indiana Experiment to the Human Genome Era, editor Paul Lombardo
  • Fit to be Tied: Sterilization and Reproductive Rights in America, 1950-1980 by Rebecca Kluchin
  • Inheriting Shame: The Story of Eugenics and Racism in America by Steven Selden

Physical Archives

  • The Carrie Buck archives at the State Library of Virginia (Richmond)

Resources and Articles that are Online/Free

Eugenics and Disabled Parents’ Rights

I am very concerned by Robyn Powell’s words: “there appears to be a growing trend toward sterilizing people with intellectual or psychiatric disabilities.”

there appears to be a growing trend toward sterilizing people with intellectual or psychiatric disabilities.  – See more at: http://healthlawreporter.bbablogs.org/2014/09/06/delivery-room-courtroom-ensuring-rights-parents-disabilities/#sthash.XFS4fKJz.Dcxu0uAb.dpuf

I am going to block quote a post I wrote in July:

Robyn Powell, Attorney Advisor at the National Council on Disability, writes in Can Parents Lose Custody Simply Because They Are Disabled?” that “removal rates where parents have a psychiatric disability have been found to be as high as 70 percent to 80 percent; where the parent has an intellectual disability, 40 percent to 80 percent.” In addition, she writes, “parents who are deaf or blind report extremely high rates of child removal and loss of parental rights.”

We are no longer in the 1920s and 1930s, and the ingrained ableism still persists into the modern day. The statistics listed by Powell, and the countless cases in which children are removed from parents with disabilities, says among other things that:

  • The disabled are not fit to bear children, nor raise them.
  • People with disabilities should not have the same rights as non-disabled parents, because they are inherently less.
  • Children need to be protected and raised away from people with disabilities.

Some people may protest, once the concept of eugenics is explained to them, that they’re not like that. They don’t support things like that. Yet by either failing to act in defense of, or supporting the removal of children from parents with disabilities, they are playing into the very legacy of eugenics.

Eugenics has been around too long. It needs to stop. Eugenic-based legal aspects are one of the policies that violate a human’s rights so deeply that I find eugenicists unforgivable. I will fight eugenic policies til the day I die. And hopefully I can write things that people can keep fighting with after I’m gone.