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

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;

Alberta Eugenics Awareness Week (AEAW) 2013 ~ Oct 16 – Oct 22, 2013

Please join us in Edmonton at the University of Alberta for a series of events throughout Wednesday October 16 to Tuesday October 22, 2013 that mark:

Alberta Eugenics Awareness Week (AEAW) 2013 ~ Oct 16 – Oct 22, 2013

Wednesday Oct 16 – Rob Wilson, University of Alberta, Standpoint Eugenics.  Brown-bag lunch co-sponsored with the Dept. of Educational Policy Studies.  Noon-1:30pm, 7-102 Education North.

Thursday Oct 17 – Eugenics and Indigenous Perspectives.  Discussion panel co-sponsored with the Faculty of Native Studies.  Panelists: Tracy Bear, Joanne Faulkner, Jerry Kachur, Noon-1:00pm, 2-06 Pembina Hall.

Friday Oct 18 – 1) Persons’ Day Panel: Feminism, Motherhood and Eugenics: Historical Perspectives. Panelists: Wendy Kline, University of Cincinnati, Erika Dyck, University of Saskatchewan, and Molly Ladd-Taylor, York University. Noon – 1:00 pm, Henderson Hall, Rutherford South. Wheelchair accessible. 2) Wendy Kline, University of Cincinnati, “The Little Manual that Started a Revolution: How Midwifery Became a Hippie Practice”, 3:30 – 5.00pm, Assiniboia 2-02A, co-sponsored with the Departments of History and Classics, and Women’s and Gender Studies. 3) FIXED: The Science/Fiction of Human Enhancement. A documentary by Regan Brashear www.fixedthemovie.com, co-sponsored with the Faculty of Rehabilitation Medicine and the John Dossetor Health Ethics Centre. Telus Centre 150.  Doors at 6:30 pm, film at 7:00 pm. Q&A with Dr. Gregor Wolbring (who is featured in the film) following the film. Wheelchair accessible and closed captioned.

Saturday Oct 19 – Team Meeting, Living Archives on Eugenics in Western Canada.  2-02A Assiniboia Hall (9:00 am – 4:30 pm) Lunch provided; please RSVP to moyra@ualberta.ca by Noon Oct 16^th.

Monday Oct 21 – 1) Joanne Faulkner, University of New South Wales, The Politics of Childhood and Community Identity.  Noon – 1:00 pm in 7-152 Education North.  Co-sponsored by the Departments of Educational Policy Studies and Human Ecology.  2) World Premiere “Surviving Eugenics in the 21st Century: Our Stories Told” 7:00 pm – 9:15 pm Metro Cinema at the Garneau, 8712 – 109 Street NW, Edmonton. Trailer: http://youtu.be/QoM12GAJm8I; closed captioned and ASL interpretation; wheelchair access through the alley entrance.  Please sign up in advance at Facebook to help us with numbers!

Tuesday Oct 22 – 1) Joanne Faulkner, University of New South Wales, The Coming Postcolonial Community: Political Ontology of Aboriginal Childhood in Bringing Them Home.  4.00 – 5.30pm in Assiniboia 2-02a.  Co-sponsored with the Departments of Philosophy and Sociology.  2) Difference and Diversity: An Evening of Performances.  Featuring CRIPSiE (formerly iDance), a reading by Leilani Muir, the art work of Nick Supina III, and much more.  Education North 4-104. Doors at 6:30 pm, performances at 7:00 pm.  Please sign up in advance via Facebook to help us with numbers!

ASL Interpretation can be arranged for events, please contact moyra@ualberta.ca prior to the event.

All Events are FREE and OPEN TO THE PUBLIC!

All events are at the University of Alberta, Edmonton.

Surviving Eugenics in the 21st Century: Our Stories Told

Join us in Edmonton on Monday October 21, 2013 at the Metro Cinema at the Garneau for the world premiere of Surviving Eugenics in the 21st Century: Our Stories Told. A series of unique short videos, survivors of Alberta’s eugenic era share their stories. What does eugenics mean now for a variety of people parenting, or considering parenting in contemporary Alberta?

Watch the trailer (at the end of this post!)

The ideas and practices aimed at improving “human breeding” known as eugenics were influential across North America in the first half of the 20th century. The Sexual Sterilization Act of Alberta was law in the province from 1928 until 1972 and was aimed to prevent what it called the “multiplication of the evil by transmission of the disability to progeny”.

The province of Alberta occupies a special place in this history. First, it is the province in which the vast majority of eugenic sterilizations in Canada were performed (approximately 90%), with British Columbia being the only other province to pass involuntary sterilization legislation that was explicitly eugenic. Alberta’s eugenic sterilization program was vigorously implemented until the repeal of the Sexual Sterilization Act of Alberta in 1972. Secondly, it was against the Province of Alberta that Leilani Muir won a landmark legal case in 1996 for wrongful sterilization and confinement, a case that has helped to preserve a rich documentary basis for understanding the history of eugenics in Western Canada.

The typical grounds for eugenic sterilization were that a person’s undesirable physical or mental conditions were heritable, and that those persons would not make suitable parents. Central amongst those targeted by such eugenic practices were people with a variety of disabilities, especially (but not only) developmental disabilities. Yet many other marginalized groups— single mothers, First Nations and Métis people, eastern Europeans, and poor people—were also disproportionately represented amongst those subject to eugenic ideas and practices, such as sterilization. An understanding of why, and of how eugenics operated as it did in Western Canada, is relevant not only to the 3.6 million Canadians with a disability, but to all Canadians who embrace human diversity and strive to build inclusive communities.

Surviving Eugenics in the 21st Century: Our Stories Told premieres at the Metro Cinema at the Garneau (8712 – 109 Street, Edmonton) on Monday October 21, 2013. Doors open at 6:30 pm and the film begins at 7:00 pm.

Join the film-makers, survivors, and other interviewees present for this world premiere!  Closed captioned (CC).  Sponsored by the Living Archives on Eugenics in Western Canada www.eugenicsarchive.ca  FREE ADMISSION

The trailer: http://youtu.be/2NREI24ugT0

Judge approves man’s sterilization

It is the first time in England and Wales a court has sanctioned a man’s sterilization. A High Court judge has sanctioned the sterilization of a man “in his best interests” in a landmark legal ruling.
The 36-year-old, from the Midlands, has learning difficulties and already has a son, born in 2010, with his girlfriend.
Justice Eleanor King ruled that a vasectomy could take place after hearing that another child could cause the man :psychological harm.”
Experts said he was capable of sexual consent but did not have the capacity to make decisions about contraception.

The entire story was released today in the BBC News and can be viewed here: http://www.bbc.co.uk/news/uk-23721893

Sterilization Abuse in State Prisons: Time to Break with California’s Long Eugenic Patterns

An article by Professor Alex Stern, Living Archives Team Member, has been released today in The Huffington Post. The article, Sterilization Abuse in State Prisons: Time to Break With California’s Long Eugenic Patterns, reveals that at least 148 female prisoners in 2 California institutions were sterilized between 2006 and 2010. Tubal ligations in violation of prison rules during those five years – and there are perhaps 100 more dating back to the late 1990s, according to state documents and interviews.  Professor Stern’s work points to a discernible racial bias in the state’s sterilization and eugenics programs.

Corey G. Johnson of the Center for Investigative Reporting (CIR) published on July 7th a detailed expose’ of unauthorized sterilizations of unwilling women in California prisons. Johnson’s excellent report brought international attention to a scandal that some activists and researchers have at least partially documented. It is important to note that, as the CIR report says, these sterilizations were illegal: Federal and state laws ban inmate sterilizations if federal funds are used, reflecting concerns that prisoners might feel pressured to comply. California used state funds instead, but since 1994, the procedure has required approval from top medical officials in Sacramento on a case-by-case basis. Yet no tubal ligation requests have come before the health care committee responsible for approving such restricted surgeries….

How could this happen?

Governor Gray Davis apologized in 2003 for California’s twentieth-century sterilizations, 20,000  procedures carried out under an explicitly eugenic law. He did so  quietly, via press release, and with no attempt to discover or  compensate the victims. (Recognized experts on American eugenics were  disappointed at the time: Paul Lombardo called it “premature” and Alexandra Minna Stern said it was “preemptive.”) Now his statement seems like a sham. The  fault is no longer the law, it’s the failure to follow the law.

North Carolina is still struggling to pass a budget that includes compensation for its victims of eugenic sterilization.  California has barely started the process of coming to terms with its  troubled history.

The California state prison system is overcrowded — Governor Jerry Brown is appealing a federal court order to release inmates — and conditions are so bad that 30,000 are on  hunger strike. If this report about sterilization helps to usher in a  period of genuine reform, that would be wonderful.

We would still need to educate all too many people, inside and  outside the jail system, about the moral and practical harm of modern  eugenics. Based on some of the remarks by state officials that Johnson  reported, and on some of the comments on coverage of his investigation,  people slide right back into eugenic ways of thinking.

Justice Now is an organization that works with women in prison. Their website has links to the CIR  reports and videos.

Professor Stern’s article in the Huffington Post raises awareness about eugenic practices and calls for a new era of human rights and the protection of vulnerable populations. Tony Platt co-authored the post. The original article can be found here: http://www.huffingtonpost.com/alex-stern/sterilization-california-prisons_b_3631287.html

Let’s make a baby: Pushing the boundaries of conception – CBC Radio One

CBC Radio One is exploring the ethical ramifications of cutting-edge reproductive technologies, such as three parent in-vitro fertilization and post-menopausal pregnancy. From June 25, 2013 through August 29, 2013 on CBC Radio One, Tuesday at 7:30 pm and Thursday at 9:30 pm. All ten episodes are available online here: http://www.cbc.ca/thecurrent/2013/08/06/lets-make-a-baby-pushing-the-boundaries-of-conception/

Disability Rights V Quality Birth Rhetoric: The Construction of Disability in China

Interesting article on the construction of disability in China by Yee-Fui Ng (Sessional Lecturer and PhD Candidate, Monash University Law School). The abstract: This article explores the tension between the Chinese government’s strong engagement in disability rights and simultaneous focus on ‘quality births’, which results in the abortion of disabled foetuses. At a broader level, the author examines the politicised and cultural construction of disability in China by scrutinising how the ‘disabled’ are defined, administered, policed and governed in postsocialist China.

Forced sterilization and disability in Australia

From a “better babies” competition, 1913

 

A Senate committee was recently established in Australia to review existing law and social policy concerning the sterilization of people with disabilities.

http://www.aph.gov.au/Parliamentary_Business/Committees/Senate_Committees?url=clac_ctte/forced_sterilisation/info.htm

It seems that the inquiry is a response to public response (surprise? outrage?) to finding out that this practice continues in Australia under state and territorial legislation, and beyond it.

I suspect that the commission will find that

Tommy Douglas, young eugenicist

from The National Post, by Michael Shevell

This NP article is itself taken from a longer article in the January 2012 issue of the Canadian Journal of Neurological Sciences.

Though bespectacled and slight of build, Tommy Douglas is a giant of 20th Century Canadian history. His iconic, indeed mythic, status within the Canadian historical landscape is exemplified by his selection, in 2004, as “The Greatest Canadian” in a CBC-mandated competition above such luminaries as former Prime Ministers Pierre Elliot Trudeau and Lester Bowles Pearson, scientist Frederick Banting, and hockey great Wayne Gretzky. This honour reflects Douglas’ role as the “father” of Canadian Medicare, which has emerged, for better or worse, as a defining feature of a Canadian national identity.

Medicare has in effect emerged as a statement of national values. Values that include compassion, fairness, tolerance and equality; values that are not selectively applied, but are extended to embrace even the most vulnerable of Canadians.

Eugenics, by contrast, concerns itself at its most fundamental level with the selective breeding of humanity to improve the human species. At a practical level, eugenics in the 20th century involved the removal from the gene pool by various means those classes of individuals considered “inferior stock,” whose deficits had an inherited basis that was immutable for future generations. These classes included those suffering from mental illness, intellectual disability or what was characterized as social diseases (e.g, alcoholism, delinquency).

The broad principles of universal-access medicare contradict those that can be utilized to justify the practice of eugenics. It would be paradoxical for an individual to support both. Yet Tommy Douglas did so with moral persuasion. Careful analysis of this contradiction reveals with hindsight further paradoxes that merit consideration. … read more

Here we go again… population panic and the blame game

Last month the United Nations announced that we’ve arrived at a human population of more than 7 billion people, sounding a call for alarm to provide targeted reproductive services for the 215 women worldwide that do not have access to reproductive services, according the UN Population Fund.

 Population panic is not new. In the early 19^th century, Anglican clergyman Thomas Malthus claimed that the dangers of population growth would put human civilization in jeopardy. Malthus did not support keeping the poor alive through charitable means and protested the Poor Laws of the time, which provided food aid and support for poor citizens and set the groundwork for the modern welfare state. Despite the fact that Malthusian population theory was proven to be erroneous- his work has been tremendously influential, most importantly, in evolutionary biology. In 1968, Paul Ehrlich’s bestselling book ‘The Population Bomb’ once again raised alarmist, doomsday predictions about the danger of population growth causing crises of apocalyptic proportions.  His predictions were also inaccurate.

 There is no question that we are facing a wide range of environmental and financial crises and far too many women lack access and choice in reproductive medicine. However, in the face of doomsday fears of scarcity, targeted population control of specific groups based on class, medical status, race and other social determinants has been a troubling historical trend. The question is not ‘if’ population is a problem; but ‘who’ gets targeted in population control programs.  Since the 1920s, targeted and eugenic population control in marginalized populations has been present across North and South America, Australia, the Middle East and Europe.  Anecdotally, we can estimate it to be happening, or have happened all over the world. This past summer at the 9^th Annual Conference in Ethics in Development in Pennsylvania, a medical researcher from Nigeria approached me following presentation of my paper on sterilization in the Americas, to say that forced sterilization surgery in tribal communities in South and Western Africa has been happening for many years and went on to describe a personal account. Belief that these incidents of reproductive abuse represent collateral damage in the more pressing fight for contraception access has cloaked the deeper Malthusian ideology that lives who cannot provide for themselves are ‘fertility liabilities’.

 The Reuters humanitarian news service, Alertnet, recently quoted Parvinder Singh, of ActionAid India on the relationship between fears of scarcity and population: “the issue of population cannot be seen divorced from the aspect of resource or energy footprint,” However, Singh continued to note that: “the largest drain continues to be in the West which have traditionally consumed, and continue to, massive volumes of resources because of a life-style and purchasing power that far exceeds that of so-called high population poorer countries.” Research has demonstrated that raising quality of life for women and their families leads to a drop in fertility- so much so that the world’s richest countries are fearing a further ‘drop’ in their national populations. The recent US recession has created a record low in fertility, leading to fears that there will be ‘not enough’ children born to sustain the national economy. So, not enough of one group- but too many of another? On what basis are these determinations made? On relative value to the economy?

 If we are to make progress against this historical trend of using population panic to make authoritarian determinations over which lives have value for reproduction, we have to own up to the pervasive Malthusian ideology that views fertility in the developed world as a valuable resource and developing world fertility as a global liability

CBC News – Edmonton – Alberta’s sex sterilizations re-examined

from CBC Edmonton, last night, with stacks of comments already.

CBC News – Edmonton – Alberta’s sex sterilizations re-examined.

‘Newgenics’ still rampant in Alberta, conference told

Front page, Edmonton Journal, by Andrea Sands:

 

‘Newgenics’ still rampant in Alberta, conference told.

Philosophy, Eugenics and Disability in Alberta and Places North – Simo Vehmas Part 2

On October 25, 2008, the What Sorts Network hosted a public symposium to examine, well, philosophy, eugenics, and disability in Alberta and places north.  Four speakers were featured on the panel, Dick Sobsey, Simo Vehmas, Martin Tweedale, and Rob Wilson.  This event was video recorded and over the next month we will highlight these videos on this blog.  Roughly four videos will be featured each week.

To download the full description of the symposium please click here.

With this video we begin the second part of the presentation by Simo Vehmas (The first part may be found here).  Simo’s presentation is titled “Preventing Disability: Nordic Perspectives” and it focuses on summarizing past and present attitudes towards eugenic practices in Nordic countries, principally Finland, with special attention paid to attitudes and ideas around eugenic practices of preventing disability.

Part 2

Highlights: Lack of knowledge by sterilization victims about what was happening, total number of Finnish sterilization victims in, illusion of voluntary sterilization, logical flaw of “playing the Nazi card”, strategy for effective discussion in the face of embarrassment, and prevention of disability vs. providing autonomous choice.

A transcript follows the cut.

The Modern Pursuit of Human Perfection: The Full Story

Below are all 13 posts from our Modern Pursuit series of posts, deriving from the public dialogue that we cosponsored with the AACL and the CACL at the University of Alberta in October 2008. The public dialogue began with some opening comments from our cosponsors, continued with short presentations from our community member panelists talking of their personal experiences, and was rounded out by a series of interchanges between audience and panel. All videos now contain transcripts (thanks to Jackie Ostrem for completing the work needed here: update 21 June, 2009: all now are closed captioned, thanks again Jackie!), and the videos are also available on YouTube. Comments on the blog on any of these posts is still welcome, but we also hope that you’ll find these of interest and use down the track for individual reflection or group discussion.

Thanks to all participants: Anna Macquarrie, Bruce Uditsky, Dick Sobsey, Wendy Macdonald, Sam Sansalone, Colleen Campbell, Anne Hughson, and Simo Vehmas. And thanks to Grant Wang and Lee Ramsdell at the Arts Resource Centre at the University of Alberta for the filming and post-production work, and John Simpson for organizational assistance.

Introduction

My doctor, my child

Living with trisomy 13, part I

Living with trisomy 13, part II

When disability meets social welfare

Bioethical reflections on disability, medicine, and family life

Decisions and dishonesty in medicine

Connecting with others

Vulnerability, trust, and confrontation

Good people in medicine and the disconnect

The denial of parenthood and selective abortion

Going underground and true choice

Disability, individual autonomy, and systematic devaluation

Going Underground and True Choice

[This is the twelfth post in a series highlighting a public dialogue held at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. For further context, please see the introductory post in the series, which can be found here; we’ll string together all posts in this series when we have most / all of them up, or you can search by the category “Modern Pursuit” to get those already posted.]

Here Anna Macquarrie from the CACL talks more openly about the history of eugenics and contemporary genetic testing. In Part 2, below the fold, there is some discussion of this, with Simo Vehmas resisting the linkage of eugenics with contemporary attitudes and practices, and some hearty discussion following from all–not everything can be heard here, but we’ve put what we could make out on the transcripts beneath the fold.

Is making the connection between past eugenic practices and contemporary practices, such as genetic testing for Down Syndrome, “playing the Nazi card”, as Simo suggests?

Going Underground and True Choice: Part 1

Note that there is no sound in the first 30-40 seconds of Part 1, which simply contains the title of the clip, the name of the speaker(s), and the location of the symposium, information that is provided in the beginning of this post.

The Denial of Parenthood and Selective Abortion

[This is the eleventh post in a series highlighting a public dialogue held at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. For further context, please see the introductory post in the series, which can be found here; we’ll string together all posts in this series when we have most / all of them up, or you can search by the category “Modern Pursuit” to get those already posted.]

Here is Bruce Uditsky, executive director of the Alberta Association for Community Living, on the hurt that people with developmental disabilities feel on being denied the right to parent, and on the kinds of choices that we allow in our society. The latter comments here reply to some of what Simo Vehmas said in his panel presentation, shown as “Bioethical reflections on disability, medicine, and family life” earlier in this series, and Simo makes a further reply, in turn, here. A transcript follows the video.

Saving the World with Viral Eugenics

Randall Gordon, a character from Paul Chadwick's Concrete series, points his finger at YOU, a la Uncle Sam, with the following speech bubble: "I'm completely serious, and I repeat my appeal. You, out there. Somewhere. Sexually transmitted; no undue harm; infertility. Go save the world."

And so a tale already fraught with controversy unleashes an ethical bombshell…

My doctor, my child: The response of the medical community to a mother who chooses to have a child who might be born with a disability

[This is the second post in a series highlighting a public dialogue heald at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. This series will bring forward the videos made of this event twice a week, roughly every Wednesday and Saturday. For further context, please see the introductory post in the series, which can be found here.]

The story you are about to hear you may find surprising in a number of ways; I know that I certainly did when I heard it on the night it was recorded. The contrast between the adversity faced by Wendy MacDonald and her family from the medical community upon making the decision to keep her baby early in the pregnancy and the support they received once it was finally time for Kyle to be delivered struck me as a very unfortunate demonstration of the power of linguistic framing. The shift in language from “miscarriage” to “premature birth” is a small one (the addition of one word, one syllable, and three letters), but it made all the difference for this family and the ability of the medical personnel involved to support them. I also found the adamant stance of her family doctor a bit perplexing, the sort of chilling paternalism that so often arises out of a misplaced belief that we alone have access to the knowledge of what is best for others. Perhaps even more than this I was surprised that this story had, and continues to have, a happy ending. For every Wendy MacDonald I am sure that there are many, many women who would be mothers and men who would be fathers that are bullied into conforming with the system because the system “knows best.”

Perhaps this video will make you a little angry, but it should also give you a little hope. Enjoy. Transcript of the clip beneath the fold.

The Modern Pursuit of Human Perfection

On October 23rd last year, the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living, sponsored a public dialogue at the University of Alberta called

The Modern Pursuit of Human Perfection
Defining Who is Worthy of Life

The event began with a panel of people who talked about their experiences with children, doctors, families, and disability. There were then several short commentaries, followed by some open discussion. The event was free and open to the public, and we have videocasts of all parts of the event to share.

Over the next month or so, we will put the videos of the public dialogue up on the What Sorts blog; each runs for 5-10 minutes or so. Today

The ethics of exclusion, the morality of abortion, and animals

[This post is the fourth in our new series of Thinking in Action posts, the series being devoted initially at least to discussion of talks at the Cognitive Disability conference in NYC in September.]

Here is a question from Adrienne Asch, together with a response from Jeff McMahan, following Jeff’s talk at the Cognitive Disability conference; Adrienne’s question followed directly on the heels of Naomi Scheman’s question, the subject of the previous post in this series.

[A full, unofficial transcript for this video clip, as well as a poll for you to participate in, are available beneath the fold. If you are having trouble playing the video above, the full transcript is provided at the end of the post, and you can also try Youtube directly by clicking right here, which for some will be more accessible.]

So does simply asking questions like “In virtue of what does human life have moral value and significance?” somehow express an ethics of exclusion? Asch seems to imply so, in part because it is asking us to draw a line between those that have some property, and those who lack it. Above the line are those with full moral status, and below it are The Rest, others who are thus excluded from full moral consideration, at least insofar as we consider them in and of themselves. If that is right, then even those who give very different kinds of answer to the question–such as those, like Naomi Scheman, who appeal to the relationships that people form a part of in their answers–still express this ethics of exclusion, at least at some level, even if they deliver an answer to the question that is more inclusive.

Asking the question as Asch has asked it—“Jeff, what is the purpose of this effort? If it is not the ethics of exclusion, I don’t know what it is.”—invites the personal response that McMahan gives to it. That response comes only after audience members are reminded that pro-choice views about abortion, popular with the politically liberal, express a kind of ethics of exclusion. I suspect that many of the disability theorists and activists in the room, perhaps influenced by Asch’s own work, don’t need reminding about this, at least when it comes to selective abortion on the basis of the results of genetic screening for “defects”. (See, for example, Adrienne Asch, 2003, “Disability Equality and Prenatal Testing: Contradictory of Compatible?”, Florida State University Law Review 315: 318-346–get this and thematically-related articles right here). McMahan got into this, he tells us, through thinking about the morality of abortion, and what it was about fetuses that made some people think that they should not be killed, while those same people were perfectly happy allowing all sorts of animals to be killed, and in some cases, eating them. McMahan’s answer is meant to provide an alternative to the answer that Asch herself seems to proffer. Where Asch sees an ethics of exclusion, McMahan sees the pursuit of abstract philosophical inquiry–albeit inquiry with real-world oomph–wherever it leads.

While one might see Asch and McMahan’s answer as alternatives, one need not; there is more than a grain of truth in each answer.