Future Past: Disability, Eugenics, and Brave New Worlds

This is the first of three panel discussions at the Future Past: Disability, Eugenics, and Brave New Worlds symposium hosted by the Paul K. Longmore Institute on Disability at San Francisco State University. This panel covers the WHAT? giving an overview of the symposium’s focus: the history of eugenics movements in North America, and why they are disturbingly relevant today.

Presenters: Alexandra Minna Stern, Marcy Darnovsky, Glenn Sinclair, Nicola Fairbrother

If you are interested in watching more panels from this symposium, please visit:

Forced Sterilization of Women and Girls with Disabilities in Australia: The WWDA submission

In November, I posted on the Australian Senate Inquiry into the forced sterilization of women and girls with disabilities.  Women With Disabilities Australia (WWDA) has just made its powerful, eye-opening submission to the Inquiry.  And there’s something you can do, pronto, that may make a difference here: endorse or support the submission.  Anyone who thinks that forced sterilization is a “thing of the past” shoudl read this submission.  First, from the submission (p.20),

There is a historical precedent in several countries including for example the USA (until the 1950s), in Canada and Sweden (until the 1970s), and Japan (until 1996) indicating that torture of women and girls with disabilities by sterilisation occurred on a collective scale – that is, mass forced sterilisation. This policy was rationalised by a pseudo-scientific theory called eugenics – the aim being the eradication of a wide range of social problems by preventing those with ‘physical, mental or social problems’ from reproducing.  Although eugenic policies have now been erased from legal statutes in most countries, vestiges still remain within some areas of the legal and medical establishments and within the attitudes of some sectors of the community:

Students Fight to Include Difficult History in California Schools

from Facing History; you might also want to check out their publication for schools on eugenics here:

March 8, 2013

In San Francisco, a group of Facing History and Ourselves students is spearheading a movement that could change public high school history classes for generations of future California teens. Their goal: to include California’s history with eugenics and sterilization in the state’s public high school curricula.  To read more, see the original post.

Pride Week Panel on Reproductive Autonomy: Control of Sexuality

Here’s the poster for the upcoming panel, Reproductive Autonomy: Control of Sexuality that we’re hosting this Wednesday as part of the U of Alberta’s Pride Week.  The sesssion will feature Lise Gotell and Lane Mandlis as speakers, with Moyra Lang and Rob Wilson performing an interpretative dance (ok, perhaps not, … but we’ll do something useful … or at least will be there).  Please print and post, or distribute electronically.  Text only version included as well.

Pride Week Eugenics Panel Poster

Pride Week Eugenics Panel Text

Rick Santorum and prenatal screening

For those that missed the controversy, towards the end of February Rick Santorum (current candidate for the Republican presidential leadership bid) argued that,  ” a lot of prenatal tests are done to identify deformities in utero, and the customary procedure is to encourage abortions.” His argument was roughly as follows: since prenatal screening leads to an increase in abortions, and since abortion is morally reprehensible, the morality of prenatal screening should also be considered. He was also, however, making the point that prenatal screening leads to a new form of eugenics — one that targets a fetus which exhibits abnormalities and deformities which are deemed undesirable. These arguments set off a firestorm of controversy.

Emily Rapp wrote a reply, “Rick Santorum, Meet my Son”, in which she claims that if she had determined that her son would have been born with Tay-Sachs (as he was), that she would have chose to abort her fetus.

 If I had known Ronan had Tay-Sachs (I met with two genetic counselors and had every standard prenatal test available to me, including the one for Tay-Sachs, which did not detect my rare mutation, and therefore I waived the test at my CVS procedure), I would have found out what the disease meant for my then unborn child; I would have talked to parents who are raising (and burying) children with this disease, and then I would have had an abortion. Without question and without regret, although this would have been a different kind of loss to mourn and would by no means have been a cavalier or uncomplicated, heartless decision.

But it seems like both sides are talking passed each-other a bit here. It seems necessary to recognize the potential dangers for a form of newgenics — something that can be informed by our understanding of the history of eugenics, and the ways in which new technologies can reassert these tendencies. But it also seems necessary to recognize the potential value of pre-natal screening technologies, and to recognize the very real pain that diseases like Tay-Sachs impart on the child.

Eugenic Reasoning in Legal Phrasing?

Argentina’s strict anti-abortion laws got a minor make-over recently, as the Supreme Court of Argentina has ruled that rape victims will not be persecuted for having abortions.  The supreme court unanimously backed the decision of allowing a 15-year-old girl, who endured years of sexual abuse by her stepfather, to terminate her pregnancy.  “However, the judges said that their decision was not part of a discussion about the legalisation of abortion in Argentina, but just a clarification of existing laws” (see article).

The controversy was centred around Section 2, Article 86 of the Argentine penal code, which states that “abortion is not a punishable act ‘if the pregnancy stems from a rape or an attack on the modesty of a woman of feeble mind’” (see article).  The horrible suffering of the poor 15-year old aside, it is interesting to note that the Argentinian law’s phrasing includes “feeble mindedness” in its allowances for legal abortions.  Curiously (and I think quite tellingly), the point of debate in interpreting the law had to do with whether or not all rape victims or just those who are deemed “feeble minded” should be allowed to terminate their pregnancies.

Now, putting the phrase “feeble minded” in the sentence cannot have anything to do with informed consent (and the fact that some individuals might be deemed incapable of giving it) since the law pertains to rape cases, which, by their very definition, are instances where neither informed nor any other kind of consent can or ever is given.  What might be the reason the phrase “feeble minded” made its way into the sentence and why might it be unclear to those interpreting the law whether or not it covered all or just “feeble minded” rape victims?  If I were to venture a guess, I would say that eugenic reasoning is likely responsible for the legal phrasing the judges had such difficulty interpreting.

A Prequel to Gattaca?

The 1997 film Gattaca, written and directed by Andrew Niccol, portrays a futuristic society where babies are genetically engineered according to parental references.  The film features a society that consists almost exclusively of such artificially built individuals, with those who are born in the archaic, natural manner occupying the fringes of this society.  In order to protect the rights of what are referred to as the “valids” and thereby keep out the inferior “invalids,” each individual’s genetic material is constantly sampled and monitored.  Every person’s DNA is stored in a database, making multiple scans and random genetic sweeps in the workplace very efficient.  The story follows an “invalid” who has a dream of becoming an astronaut, a job open only to the genetically enhanced elite.

But my intention here is not to provide a synopsis of the film, which is very good and is certainly well worth the time it takes to watch.  Rather, I wanted to Continue reading

Mixed Britannia

In October 2011, BBC released a documentary series entitled “Mixed Britannia.”  A related news article can be found at the link below:

http://www.bbc.co.uk/news/uk-15164970

The first couple of parts spend quite a bit of time touching on the pseudo-science of eugenics in Britain, and the role it played in shaping its society, as well as its views on women.

The Racial Hygiene Society focused in the early 1900s on looking at race, and most specifically, mixed race.  As one quote from the documentary stated, Continue reading

One Child, Three Biological Parents – End of Diseases?

Last week, The Telegraph announced that within three years, it will be possible to have three biological parents for any one embryo using in-vitro fertilization.  Why would anyone pursue such a technique?  To “eradicate hereditary disease.”  You can read the full artcle below:

http://www.telegraph.co.uk/science/science-news/9025121/Babies-with-three-parents-possible-within-three-years.html

This controversial method proposes that transferring a tiny fraction of DNA from a different donor than only the parents will result in a child without mitochondria-related diseases.  (Mitochondrial diseases are often severe and incurable, including muscular dystrophy and ataxia).  Researchers believe they can wipe out such diseases within a generation.  Children would also retain DNA from both their mother and their father.  The genetic implant of a third person is described as being “as minimal as changing the batteries in a camera.”

Researchers are also placing great emphasis on needing public support, before current laws (which would prevent such an operation) become changed.  Strong opposition comes from “groups who oppose embryo research and claim genetic engineering can result in serious defects.”

What is perhaps equally interesting to the article itself is the poll available on the website.  The Telegraph asks: Continue reading

Canada as a model for sterilization compensation

Douglas Wahlsten has emailed to inform us of a publication in the Winston-Salem Journal on the story of Leilani Muir: the court battle (and victory) over wrongful sterilization, compensation, and the numerous cases that followed. Wahlsten explores these as a potential model to be used in cases of sterilization compensation in the United States, while also noting the recent promotion of the Canadian Eugenics’ past with the CURA funded Living Archives Project and the NFB documentary on the Leilani Muir case.

The award for sterilization followed existing rules in Alberta about an upper limit of damages for loss of the ability to have children from injury. Other jurisdictions may have another limit or even no limit at all. Consider the recent case of Evans vs Lorillard, where a man was awarded $152 million because the tobacco giant gave cigarettes to his mother when she was a child, and she became addicted and eventually died of lung cancer.

What would be the award if a woman lost her ability to have children because of a mistake during surgery or an auto accident? It seems this would be a reasonable standard for an award to victims of eugenic sterilization. To give them less implies they do not deserve the same respect as other people. Surely the amount should exceed the $20,000 proposed for victims of eugenics in North Carolina, because having children is a precious thing.

You can find the article here. 

North Carolina Eugenics Task Force, Preliminary Report

The preliminary report of The Governor’s Task Force to Determine the Method of Compensation for Victims of North Carolina’s Eugenics Board (available beneath the fold) was delivered today. In it, North Carolina State Representative Larry Womble says, at the final meeting of the committee, held three weeks ago:

Eugenics [is] a fancy name for sterilization. I am very compassionate about this issue and have worked on it for 10 years. If I’ve been involved for 10 years, what do you think about the victims themselves and it is a shame and disgrace what has happened to them. I thank the Task Force for all their work. But at the same time, I cannot be timid about this, I can’t be Mille mouthed. I cannot be cute about this because it’s not a cute and nice subject. We did to humans what we do to animals, we spade and neuter animals not people. And we did this to children 10 and 11 and 12 years old, they were not criminals, they did nothing wrong. We talk about we are the land the free and the home of the brave and when we do this to children and I’m wondering how sincere we really are. Continue reading

Added support for compensation and public acknowledgment for eugenics victims in North Carolina

h/t Doug Wahlsten.

North Carolina state flag

North Carolina state flag

The state of North Carolina has recently been revisiting its extensive eugenic past, and the latest move is a statement of support for compensation for sterilization victims from the director of Legal and Regulatory Studies at the John Locke Foundation.  Eugenic sterilization legislation was in place in NC until 1979; there are slightly fewer than 3000 living survivors of the regime of sterilization that was in place in NC until that time.

The full story is in the Lincoln Tribune.

Too dumb to be a mum?

Many stories like this (this one from the Mirror; h/t Velvet Martin) out there.  Does anyone know the legislative basis for these interventions in the UK?  One prong in many pieces of eugenics legislation was “incapable of parenting”–the other was “prospect of transmission of mental defectiveness”.  So this makes you wonder how far we are from that eugenic past.

On Mother’s Day.. the heart warming story of a girl who had to fight for the right to bring up her own child

Kerry McDougall with son Ben (pic: John Power)

Strolling along the beach, her young son in her arms, Kerry McDougall prepares for the perfect Mother’s Day – one that last year she could only dream of.

For 12 months ago tiny Ben was in care and Kerry’s life was in tatters – after social workers deemed her both too stupid to look after her son AND not even bright enough to wed her fiancé Mark.

Ben was just three days old when social workers marched into the maternity ward where Kerry was breastfeeding and took him away.

It was the start of a long, heartbreaking battle to become a proper family.

Read more: http://www.mirror.co.uk/life-style/real-life/2011/04/03/they-told-me-i-was-too-dumb-to-be-a-mum-but-i-proved-them-wrong-115875-23035451/#ixzz1It5O27Rg

Eugenics and the Firewall: Canada’s Nasty Little Secret

A book by Jane Harris-Zsovan will be launch on Wednesday November 17th 1:30 – 3:30

It’s a dirty little secret the heirs to Alberta’s populist legacy don’t want Canadians to talk about. In 1928, the non-partisan United Farmers of Alberta passed the first Sexual Sterilization Act. The UFA’s successor, the Social Credit Party, led by radio evangelist WilliamAberhart, and later by his protégé Ernest Manning, removed the need to obtain consent to sterilize “mental defectives” or Huntington’s Chorea patients with dementia.

Continue reading

“Project Prevention”

The story below by Nick Collins is from the Sydney Morning Herald; h/t Peter Chen.

What year is it?  From what they’re doing, you might think 1910, rather than 2010.  And from the name of the project, you might think  1984.  See also the earlier BBC News story, from February 2010, “Should drug addicts be paid to get sterilised?”

Charity pays addict $320 to have a vasectomy

Nick Collins

October 19, 2010

LONDON: A drug addict has become the first person in Britain to be sterilised in exchange for cash under a new project.

The man, known as John, who has been addicted to heroin for 15 years, was given £200 ($320) by a US charity to have a vasectomy.  Project Prevention, the charity running the scheme, has made similar payments to thousands of men and women in the US in a campaign to prevent them having children who may inherit their addictions. //

The 38-year-old man said he had been involved with drugs since age 11 or 12 and that the offer of money had prompted him to have the operation.  ”It was kind of what spurred me into doing it in a way. It was something that I’d been thinking about for a long time and something that I’d already made my mind up that I wanted to do. Just hadn’t got around to it.”  The charity began offering the cash incentive to British addicts after paying 3500 Americans to be sterilised.

You can read the full story here, and an earlier story on passing the 3000th person milestone, back in April 2009, over here. There is also a Facebook group, “No to eugenics in the UK! Keep Project Prevention Out of the UK“.  You can also see how Project Prevention presents itself on its website; it is a 501(c) registered charity in the US.

Gene identified as cause of intellectual disability

The gene is called TRAPPC9. Its mutations cause up to 50% of intellectual disabilities worldwide, says Dr. John B. Vincent of the Center of Addiction and Mental Health. The way his team identified the gene disturbs me. They studied genes of a large family from Pakistan that had at least seven members with non-syndromic intellectual disability and another from Iran. Because “researchers and families themselves have long suspected an inherited factor, based on patterns observed in extended families.” Dr. Vincent says, “This spotlights the intense interest that genetics is bringing to types of inherited intellectual disability that, to date, have been poorly understood.” He is talking about “devising potential therapeutic strategies,” too.

http://www.medicalnewstoday.com/articles/174204.php

This all sounds so familier. The Kallikak family…..the Duke family……Buck V. Bell……..  So it’s coming back, after all?

Bankruptcy for Justice?

Barb and Tim Farlow elected to have a malpractice suit against a Toronto hospital heard in small claims court, but a judge has ruled the venue is inappropriate. (Photo by Tim Fraser, National Post Files)

On Monday, November 30th the National Post (a Canadian national newspaper) posted an update on their previous coverage of the Farlow court case. Those of you who are regular readers will recall that the Farlows have made serious allegations against Sick Kids Hospital in Toronto. These allegations amount to the claim that doctors at Sick Kids deliberately killed their baby, Annie, in 2005 because she had a fatal genetic abnormality. The decision handed down from Judge Herman amounted to a claim that small claims court was no place for the kinds of charges that the Farlow’s were raising: Continue reading