The Scope of Eugenics: Call for Submissions

Eugenics Archives (eugenicsarchive.ca) is pleased to announce a four-day workshop at the Banff Centre, May 22nd-25th, 2015, in Banff, Alberta. To acknowledge the significant contributions made by students to the Living Archives on Eugenics in Western Canada project over the past four years, we invite submissions from early career scholars—students and those within three years of completing their doctorates—from any discipline on topics related to eugenics and its contemporary significance.

Submissions should consist of a single document that includes a (i) summary abstract (<150 words), (ii) longer description (<750 words) outlining the presentation and explaining the relevance of the topic to eugenics, (iii) short biographical statement (<100 words), and (iv) CV. Possible topics include, but are in no way restricted to, the following :

Apologies to eugenics survivors / Child welfare /
Collective memory / Human diversity /
Nationalism / Quality of life /
Queer sexuality / Roma peoples /
Schizophrenia / World Health Organization /
Whiteness / Particular Countries / Geographic Regions

The project director is happy to provide feedback to potential participants on these and other suggestions (e.g., on particular countries or regions of the world). Participants are expected to attend the whole workshop and to contribute a short article to eugenicsarchive.ca, ideally based on their presentation, within one month of the workshop. Articles accessible via the Encyc or Around the World modules at the site indicate the type of article we have in mind.

Accommodation and meals for all workshop participants will be covered by Eugenics Archives. Participants will also be notified upon acceptance if we are able to cover in full, or contribute to in part, additional travel expenses. The workshop will allow for substantial opportunities to enjoy the Banff surrounds and will encourage networking, mentoring, and informal discussion between junior scholars interested in eugenics and Eugenics Archives team members.

Deadline for submissions : February 15th, 2015 Acceptances : March 15th, 2015

Questions and submissions to the project director, Professor Rob Wilson : scopeofeugenics@gmail.com

Less than half of Canadian adults with disabilities have jobs: StatsCan

Less than half of working-age Canadians with physical and mental disabilities have a job, a significantly lower percentage than the general population, according to Statistics Canada.

A data agency report released Wednesday coincides with International Day of Persons with Disabilities, a UN sanctioned day to raise awareness. The report covers data from 2011 and indicates 49 per cent of Canadians between ages 25 and 64 who said they have a disability could find employment. That compares with a 79 per cent employment rate among the general working-age population.

“Canadians with disabilities include those with a physical or mental disability related to seeing, hearing, mobility, flexibility, dexterity, pain, learning, development, psychological/mental disorders or memory,” the agency says.

About two million people across Canada self-identify in that category — about 11 per cent of Canada’s entire population for that age group. Out of those more than two million people, only about a million of them have some sort of job.

Within the group of individuals who consider themselves to have some sort of disability, the agency divides disabilities into four categories, with these job rates:

Mild disability — 68 per cent employment rate.
Moderate disability — 54 per cent.
Severe disability — 42 per cent.
Very severe — 26 per cent.
Generally speaking, the more severe the disability, the less likely an individual will get work.

Diane Bergeron is the national director for government relations and advocacy with the CNIB. She says the main problem that people with vision issues face in terms of employability isn’t a lack of skills — it’s a perception and an assumption that they can’t do the job, or that the workplace will have to accommodate them in some onerous way.

“People think ‘if I was to close my eyes, I couldn’t do any of the work I do, like use the computer or read files’ [so they assume a blind person can’t either],” she said in an interview. “But what they don’t think about is there are talking computers — technology has opened up the world to have us participate.”

According to the Statistics Canada report, having a university degree seems to increase the odds of finding employment, for both Canadians with disabilities and without.

Education pays off

Employment rates for university graduates with mild, moderate and severe disabilities weren’t that far off from the rate for those without any disability — the rates for all the categories ranged between 77 and 83 per cent.

But the employment rate of university graduates with a very severe disability was lower, at 59 per cent.

A bias against disabled people with the appropriate level of education is a big problem, Bergeron says, because people with vision issues often face disproportionate difficulties in getting a job, even after they’ve gone out and obtained the necessary level of education.

“Employers always tell me that their ideal employee has skills like strategic thinking, problem solving, drive and passion,” she says. Those are the types of skills that blind people have in abundance, as they need to use them to do countless daily tasked that sighted people — the “retinally dependent,” she quips — aren’t even aware of, such as getting into work in the first place.

“All the skills you want in an employee are abundant in an employee who you have decided isn’t ideal,” Bergeron says.

Statistics Canada’s numbers show education is clearly a factor in employability across all groups, and the numbers suggest that’s especially true for Canadians with disabilities.

Among those with a severe or very severe disability and less than a high school diploma, the employment rate was only 20 per cent. That compares to a 65 per cent employment rate for the population at large of Canadians who didn’t finish high school.

Perhaps most troublingly, people with disabilities often earn far less than other Canadians without a disability — even when doing similar work.

Men with disabilities and who have university degrees and full-year, full-time work earned an average of $69,200 in 2011, compared to $92,700 for men with no disability.

The numbers showed the same trend for women, although the gap was smaller.

Among women university graduates working full time, employment income for those with disabilities averaged $64,500, compared with $68,000 for those without a disability.

It’s a story that Bergeron hears often — the right person for the job is passed over because society has decided they might be “disruptive” to the workplace and not worth the cost of accommodating.

“That’s the perception,” Bergeron says, “that they wouldn’t have the skills.”

http://www.cbc.ca/news/business/less-than-half-of-canadian-adults-with-disabilities-have-jobs-statscan-1.2858954

Forced Sterilization of Romani Women

“I decided to come out with my story so that it doesn’t happen to other women, to our children, to our grandchildren. So that they never find themselves in the situation I am in today.”

Elena Gorolova, victim of forced sterilization, interview for Romedia’s I’m a Roma Woman campaign

Elena Gorolova

Between 1971 and 1991 in Czechoslovakia, now Czech Republic and Slovakia, the “reduction of the Roma population” through surgical sterilization, performed without the knowledge of the women themselves, was a widespread governmental practice. The sterilization would be performed on Romani women without their knowledge during Caesarean sections or abortions. Some of the victims claim that they were made to sign documents without understanding their content. By signing these documents, they involuntarily authorized the hospital to sterilize them. In exchange, they sometimes were offered financial compensation or material benefits like furniture from Social Services – though it was not explicitly stated what this compensation was for. The justification for sterilization practices according to the stakeholders was “high, unhealthy” reproduction.

They sterilized thousands of Roma women in this way. The Czech ombudsman estimated that more than 90,000 women from former Czechoslovakia became infertile as a consequence of such interventions. If the evidence for such treatments performed in the past is not alarming enough, there seems to be proof that this practice was not only common during the Communist era: there are women reporting the same crime in post-Communist times as well, even after Czechoslovakia split into Czech Republic and Slovakia. In what is today Slovakia, 1000 Roma women and girls were sterilized annually in the 1980s. Unfortunately, the practice of forced sterilization in this region of Europe seems to persist to some extent, with cases emerging in other countries as well.

The European Roma Rights Centre pointed at two cases of Romani women who were sterilized in Hungary without their consent. One of them relates back to 2001, when a young woman, A.S. accused a hospital for sterilizing her without her knowledge. Following eight years of intensive lobbying, with several organizations started pressuring the government, in 2009 the Hungarian state compensated A.S. The court acknowledged that the surgery was performed without her knowledge, but it also claimed that the surgery did not harm A.S.’s reproductive capacity as the sterilization was purportedly “reversible”. The second case taken up by ERRC is still in process, as it was rejected in the first instance by the Hungarian Court.[1]

The victims of forced sterilization have begun to speak out against these crimes by creating a movement to stop forced sterilization and bring justice to the victims in the Czech Republic as well. Czech Romani activist Elena Gorolova was one of those who started the movement by founding Group of Women Harmed by Forced Sterilization. She is a victim too, sterilized while having her second child in 1990. Mrs Gorolova, like many other Romani women, was not able to file a civil lawsuit because the deadline for seeking legal action had already expired. Nevertheless, she tried to pursue legal justice with other women, moving her case from the local to the national and international level. They organized demonstrations, such as the one in Ostrava in front of the hospital infamous for sterilizing Romani women in large numbers. Elena is one of the eighty-seven women who sent their complaints to the Czech ombudsman, reporting forced sterilization. In December 2005, in his final statement on the issue, the ombudsman declared that sterilizations performed on Romani women are illegal.[2]

The story of Elena and the others is not the first policy of compulsory sterilization in history. The first was documented in the US in the beginning of the 20th century. African-American women were sterilized against their will, many of them without their knowledge, while they were in a hospital for other reasons or sometimes even while serving a prison sentence. More than 65,000 individuals were sterilized in 33 states in the framework of compulsory sterilization programs. This US policy was followed by several other countries, including Canada, Russia and Germany, that approved compulsory sterilization as a governmental practice.

In the case of the Czech Republic and Slovakia, many lawsuits ended with the victory of the victims of sterilization. However, most of the pursuers kept their identity secret or the outcome of the case was not made public for other reasons. Elena Ferencikova was the first Roma women to sue the Czech Health Authority in 2005 for the damages she suffered when they sterilized her at the age of only nineteen.[3] The court didn’t decide on financial compensation but the hospital where they performed the intervention apologized for sterilizing Elena without her agreement, damaging her future and her harming her status in her community. At the time of the intervention, she was a young bride, with the dream of having a big family.

Until the most recent past, over 87 Romani women filed an official complaint against the Czech health authority The first action on the government’s behalf was an apology in 2009 during a press conference, followed by the report from the Czech Ombudsman about the illegality of the practice in 2005.[4]

Among the individual cases which ended in favor of the victims is that of Iveta Červeňáková who sued the Czech Republic for sterilizing her about fourteen years ago. Her case was in front of the Ostrava Regional Court for one million Czech crowns compensation, since she never requested the surgery. After losing the case, the hospital appealed to the High Court in Olomouc, claiming that her right for financial compensation expired and she can only win an apology. But their statement was not accepted and the Czech Supreme Court decided that Ms Červeňáková still has the right for financial compensation. The case was concluded with an out of court settlement between the hospital and the victim. The details are confidential between the two parties. [5]

The above case seems to be rather typical: the content of out of court settlements is not made public and the reason that women gained mere apologies from the hospitals is usually due to an allegedly expired right for financial compensation. On the other hand, there are cases whose outcome was made public, like one from 2012: the court made the decision that the government was at fault and the woman in question should receive a compensation of EUR 10,000.[6]

Looking at several cases of forced sterilization, a serious infringement of human rights is what should be emphasized, as reflected also by the recommendations from the NGOs’ side, the ERRC and the Czech Government Human Rights Commissioner Monika Šimůnková, who all stress the need for developing a compensation mechanism for all victims of sterilization. A well-functioning mechanism is needed since not all victims are literate enough, have the financial sources, or the knowledge to ask for justice in court. Majority of Czech ministers agreed and a mechanism should be developed by the end of 2013, as part of the already existing legal framework. However, there is a concern that many of the affected women will still be excluded from the opportunity to gain justice.[7]

To add a personal perspective on the issues at stake, I see many reasons justify the need for the government to develop a compensation mechanism. For instance, trends show they are losing cases on the international level. Developing such a mechanism would mean that the cases would remain on the local or national level. Another reason could be financial: whatever compensation mechanism the government develops, the amount of compensation is not equivalent to the cases decided by the European Court of Human Rights. The third reason could be that authorities are trying to escape the negative backlash caused by not assuming responsibility and not criminalizing this governmental practice. In conclusion, the development of a compensation mechanism could keep “embarrassing” cases from reaching international publicity, which could lead to public ignorance if no one realizes how many actual victims there are and in what circumstances these crimes happened.

Of course, one could also argue that after years of injustice affecting hundreds of women, the fact that some women will receive justice might pave the way for others. Still, the question must be asked: is this enough? Is compensation enough? I am concerned that whatever compensation they eventually receive, the truly important development would be if governments themselves are seriously pushed to criminalize forced sterilization: only this could prevent these horrible stories from repeating themselves.

While human rights can be violated by individuals or by institutions, they can only be defended by institutions. The European Court of Human Rights does not deal with single individuals who have committed crimes. Rather, it focuses on why the government in question could not take action against what happened. But where are the doctors, politicians and all the people who personally contributed to or carried out such surgeries, and when they are going to take responsibility for their actions? In order to take action against this human rights violation, blaming the Communist regime is not enough. The practice continues today and forcibly sterilized Romani women are still a long way from receiving true justice.

Written by: Galya Stoyanova, Romani intern at Romedia Foundation

[1] Albert, Gwendolyn. “Forced Sterilization and Romani Women’s Resistance in Central Europe.” Forced Sterilization and Romani Women’s Resistance in Central Europe. N.p., 2011. <http://popdev.hampshire.edu/sites/popdev/files/uploads/u1149/DT_71_Albert.pdf&gt;.

[2] Ibid.

[3] Holt, Ed. Roma women reveal that forced sterilization remains. N.p., 12 Mar. 2005. Web. <http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(05)71063-1/fulltext&gt;.

[4] Decade of Roma Inclusion . Czech Prime Minister Apologizes to Victims of Coercive Sterilization. N.p., n.d. Web. 1 Feb. 2013. <http://www.romadecade.org/czech_prime_minister_apologizes_to_victims_of_coercive_sterilization&gt;.

[5] Stop Torture in Healthcare. <http://www.stoptortureinhealthcare.org/news-and-resources/forced-sterilization/czech-hospital-pays-romani-woman-forcibly-sterilized-14-year&gt;

[6] ROMEA. Czech Gov. compensates another woman over illegal sterilization. N.p., 11 Dec. 2012. Web. 1 Feb. 2013. <http://www.romea.cz/en/news/czech/czech-govt-compensates-another-woman-over-illegal-sterilization#&gt;.

[7] Open Society Foundations. Against her will – Forced and coerced sterilization of women worldwide.

<http://www.opensocietyfoundations.org/sites/default/files/against-her-will-20111003.pdf&gt;

Introducing the “Did I Stutter?” blog

Earlier this year, Josh St. Pierre and Zach Richter started the very cool website and blog “Did I Stutter?”.  For and about people who stutter, and run by two savvy PWSs, the blog should get some attention from those reading Living Archives / What sorts posts.  With the most recent post, “Eugenics and the Cure for Stuttering”, Josh makes some of the connections here more overt:

Being from Alberta and knowing about our shameful eugenic history colours the search for a stuttering cure for me. As well intentioned as it may seem, a “cure” for stuttering cannot be separated from the idea and practise of eugenics that assumes the world would be a better place without disability, without us. We already screen for Down Syndrome since we have decided some lives are more valuable than others. In 20 years might we screen foetuses for stuttering?

You can read the whole post here .

Eva Feder Kittay: 2014 Guggenheim Fellow

Eva Feder Kittay, Distinguished Professor of Philosophy at Stony Brook University and Senior Fellow of the Stony Brook Center for Medical Humanities, Compassionate Care, and Bioethics, has been awarded a Guggenheim Fellowship to complete a book tentatively titled Disabled Minds and Things that Matter: Lessons for a Humbler Philosophy. The prestigious fellowship, which places Professor Kittay in the company of many illustrious names, which also includes a lengthy list of noble prize laureates (Czeslaw Milosz being a particular favourite of mine), was established in 1925 and is granted to individuals whose work makes substantial contributions to education, literature, art, and science. Professor Kittay’s work pushes philosophical discourse beyond the inadequate rationalistic framework that has traditionally been utilized to measure the worth of persons. She urges that actual relationships of care and love characterize who we are and why we are morally considerable. Equipped with both the argumentative and analytic tools of a philosopher and the personal experience of being a parent of a child with severe cognitive disabilities, Eva Kittay is in a unique position to play the part of a competent judge whose insights have great philosophical, and more saliently, educational value. Although Disabled Minds and Things that Matter: Lessons for a Humbler Philosophy will be a philosophically rigorous contemplation on the place of disability in philosophical discourse, it will nevertheless be aimed at the educated lay reader, meaning that it will not only shape future philosophical projects, but will also serve to educate the public.

Why is a focus on disability important to the future of philosophical research? Taking severe cognitive disabilities into account when formulating questions in philosophy will force us to reframe both traditional and contemporary inquiries. For example, the rationalistic model of personhood inherited from Aristotle and Kant as well as the numerous individualistic psychological accounts of diachronic personal identity that have been developed since Locke’s Essay Concerning Human Understanding will have to give way to other, more inclusive models and accounts that better represent the relational nature of memory, personhood, and moral status of human beings. Relational personhood and an extended account of personal identity, which is the focus of my own research is indebted to such fundamental reframing of philosophical questions by placing the interests of individuals with severe cognitive disabilities at the centre of our philosophical contemplations regarding the moral status of persons. If placing disability at the centre of philosophical inquiry helps philosophy transcend its current theoretical bounds, then not only is Eva Kittay correct in suggesting that disability is at the frontier of philosophy itself, but Professor Kittay and those her research project inspires to work at the intersection of philosophy and disability studies are forging a new philosophical direction in the time honoured spirit of philosophical innovation and transformation.

Reflections on World Down Syndrome Day 2014

March 21st is World Down Syndrome Day, and 2014 is the ninth year in which it has been held, and the third in which it has been recognized by the United Nations. I want to start this post with an already-widely viewed video from CoorDown that has been up for less than a week, and step back from there.  The video is called “DEAR FUTURE MOM”:

At the time of writing, this video had been viewed over 1.6 million times in 6 days, with over 500 comments on it.  It’s clearly designed to be emotional and to directly send a number of messages, including at least these: anxieties about having a child with Down syndrome are understandable but overblown; children with Down syndrome will likely bring much joy and richness to the lives of any family they are in, and particularly to mothers; and Down syndrome does not obliterate or subhumanize the person who has it.

The need for those messages, and perhaps others, to be sent, loud and clear, is grounded in the sad fact that parental fears associated with potentially having a child who will have Down syndrome are amongst the highest risk factors for people with Down syndrome.  This is because Continue reading