Meet the New Eugenics, Same as the Old Eugenics

From the Center for Genetics and Society blog, by Gina Maranto, Biopolitical Times guest editor, March 4, 2013

The unfortunate truth is that discredited ideas never do die, they just rise again in slightly altered forms—witness eugenics. Despite the horrors perpetuated in its name, including forced sterilization and the Holocaust, the eugenic impulse is with us still. One of the forms it takes is schemes for “improving” offspring through the selection and manipulation of embryos.

In the last year or so, one neo-eugenic advocate in particular has been garnering media attention. He’s Julian Savulescu, holder of an array of titles, including an endowed chair and directorship of a center at the University of Oxford funded by the Uehiro Foundation on Ethics and Education.

Documentary on Ashley Treatment

22 May 2012 Disability Rights Washington and Video Galaxy  have great new video  on the Ashley Treatment on their website. There is also a poll on this page asking whether you believe more safeguards are needed to protect the civil rights of people with disabilities from civil rights violations and medical discrimination of the Ashley Treatment and related procedures.

Maine law changes disparaging language in state statutes, programs

from Bangor Daily News Maine, April 9th, 2012:

Christina Mailhot got teased a lot as a child.

Born with Down syndrome, words like “retard” were flung at her every day, meant to be insulting. So when Mailhot, now 33 and a member of the Augusta-based self-advocacy group Speaking Up For Us, heard state officials using “mentally retarded” in relation to people with disabilities, she cringed.

“It’s legal talk; they’re legal words saying we are stupid,” she said. “I’m not that stupid, you know.”

Soon, such words will be wiped from Maine law and removed from the names of some Department of Health and Human Services programs. They will be replaced with phrases like “intellectual disability” and “person with a disability.”

Read the whole article here

Offensive words and phrases and their recommended replacements:

• Afflicted (eliminate or use “affected”)
• Crippled children (children with disabilities)
• Deranged (persons who have mental health diagnoses)
• Drunkard (person with alcoholism)
• Handicapped (eliminate as a noun, as in “the handicapped.” Replace with “disabilities” when paired with a person, as in “child with disabilities”)
• Lunatic (person declared legally incompetent)
• Mental deficiency (cognitive disability)
• Mental retardation (developmental disability)
• Mentally defective (has a cognitive disability)
• Senile (eliminate or use “people with dementia” or “people who have dementia”)

Martin family argues for legal funding at fatality inquiry

An article posted to the St. Albert Gazette explains how the family of a 13-year old foster child, who died shortly after leaving foster care, is seeking funding and payments for a lawyer to represent them in an inquiry into her death. The inquiry is meant to shed light on the girl’s death, with the aim of preventing further foster-care related injury or death.

Samantha Martin died in December 2006 after collapsing from an apparent heart attack. The inquiry is supposed to determine what caused the girl’s cardiac arrest.

Martin lived in foster care for most of her life; she was born with a rare chromosomal disorder and the government insisted the Martin family place her there to receive the necessary medical supports.

Read more here.

Wallace Kuralt’s era of sterilization

The Charlotte Observer has recently published an article on the story of Wallace Kuralt, a primary figure behind the eugenics movement in North Carolina. The article weaves between Kuralt’s personal story, his struggle to find a job during the depression, his desires and motivations, with the broader history of eugenics in North Carolina and the United States:

Compassionate. Visionary. A champion of women and the poor.

That’s the reputation that Wallace Kuralt built as Mecklenburg County’s welfare director from 1945 to 1972. Today, the building where Charlotte’s poor come for help bears his name – a name made even more prominent when his newscaster son, Charles Kuralt, rose to fame.

But as architect of Mecklenburg’s program of eugenic sterilization – state-ordered surgery to stop the poor and disabled from bearing children – Kuralt helped write one of the most shameful chapters of North Carolina history.

You can read the rest of the article here.

60 Minutes NZ: Down syndrome eugenics?

A segment to me aired on 12 June 2011 on TV3′s 60 Minutes explores whether new prenatal testing programs in New Zealand to detect Down syndrome during pregnancy  is a form or eugenics.

Fundamental Disability Rights Case Goes to Supreme Court of Canada

On Tuesday May 17th the Supreme Court of Canada will be asked to consider whether people with intellectual disabilities should be allowed to testify in court.  Specifically, the question before the Court is whether people with intellectual disabilities are required to demonstrate an understanding of the concept of a “promise to tell the truth” in order to be permitted to testify.

On Tuesday May 17th the Supreme Court of Canada will be asked to consider whether people with intellectual disabilities should be allowed to testify in court.  Specifically, the question before the Court is whether people with intellectual disabilities are required to demonstrate an understanding of the concept of a “promise to tell the truth” in order to be permitted to testify.

Your link text here.

Marwencol

 

I went to see the film Marwencol last night at the Metro Cinema; if you’re in Edmonton, you can catch it Sunday and Monday nights at either 7 or 9pm.  And if you are in St. Elsewhere, check it out when it does the rounds.  It is breath-takingly good.

 

The one sentence reason why?  Marwencol avoids freakification, sensationalism, and victimization in telling a powerful story that invites all three.

 

I Hate “Special Needs”

Of course I don’t hate so called people with “special needs”; I hate the label “special needs”.  I’m no fan of other forms of “politically correct” language (for example, visually impaired, partially sighted, or people with disabilities).  But at least I can understand the motivations behind employing these terms.  The word blind (to the uninformed) connotes the complete absence of sight.  I would rather expand the widely-accepted meaning of the word blind, but I get the motivation behind introducing a term that suggests an inability to see very well without being completely blind.  Similarly, I understand the desire to want to emphasize that the physical variation isn’t the entire person.  I don’t like the way the phrase ”people with disabilities” implies that the person possesses the disability rather than it being imposed by social factors, but we do wrong if we fail to acknowledge anything more about a person than the physical variation that results in disability, and “people first language” is trying to address that wrong.

That said, I can’t find worthwhile motivations behind the use of the term “special needs”, and I strongly reject the sentiment expressed by the term.  What it implies is that there is a group of people who possess a set of needs that differ from… differ from whom? From those who are normal I suppose.  What is overlooked by this attitude is the ways in which social factors (e.g., power and status) can shape needs and determine which ones get marked off as “special”.

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.

Disability on Television: Family Guy

The following excerpt is taken from an article that was published on August 27, 2010.

The National Down Syndrome Congress of the U.S. is taking Emmy organizers to task for nominating the song Down Syndrome Girl for an award for outstanding original music and lyrics.  The song was sung by Baby Stewie on the satirical animated show Family Guy in an episode broadcast in February.  There was outrage when the episode was shown, and Down syndrome advocates became more concerned after the song picked up still more viewers on YouTube. The Emmy nomination added to the insult.  “It goes through a litany of stereotypes that people with Down syndrome have been fighting for years, and so self-advocates stood up and said ‘we’ve had enough,’” Carol Bishop Mills, a member of the board of the National Down Syndrome Congress, said Friday in an interview with CBC’s Q cultural affairs show.

To read the rest of the story, go to the CBC site here or at this url: http://www.cbc.ca/arts/tv/story/2010/08/27/down-syndrome-girl-emmy.html

You can also listen to the relevant segment of the episode of Q referenced above right here or at

http://www.cbc.ca/q/blog/2010/08/27/should-the-song-down-syndrome-girl-from-family-guy-win-an-emmy/

You can watch the video for Down Syndrome Girl immediately below

Next is a video that displays the lyrics fairly clearly:

Inclusive Post-Secondary Education

Alberta is a Province of contrasts. While Alberta’s role in sterilizing people with Developmental Disabilities as late as the 70s is infamous, Alberta also deserves kudos to for providing the world’s first inclusive post-secondary education program for people with developmental disabilities in the 1980s, and the On Campus program continues today, 23 years later at the University of Alberta. Alberta now boasts inclusive post-secondary education programs at 17 colleges and Universities across the Province and maintains an international leadership role in the field. Unfortunately, these programs sit precariously on the chopping block today as Alberta faces financial difficulties.

Tony Judt on motor neuron disease

There’s a very interesting video of distinguished historian Tony Judt talking about motor neuron disease, life, and euthanasia up about a week or so ago at The Guardian website. The article is entitled “One of the worst diseases on the Earth”, taking a line from the interview itself. It isn’t embeddable right now (so far as I can tell), but the link to it is right here.

Cognitive Disability and its Challenge to Moral Philosophy

Readers of the blog who followed our Thinking in Action series of blog posts on the above-named conference, held in New York in September 2008, as well as others, might be interested in having a look at the finished papers from that conference. They have now been published in a special issue of the journal Metaphilosophy (which strikes me, at least, as a strange venue). The table of contents is below and from here you can link to the abstracts for each of the papers; for the full versions, you need an individual or institutional subscription, it seems. To see some videoclips from the conference, together with critical commentary, check out the Thinking in Action posts themselves; nearly all of these directly discuss the talks at the conference corresponding to some of the papers listed below. The videos are both closed captioned and have transcripts with them to enhance accessibility.

thanks to shortintro for the blog comment that drew this to our attention.

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ARTICLES

INTRODUCTION: RETHINKING PHILOSOPHICAL PRESUMPTIONS IN LIGHT OF COGNITIVE DISABILITY (p 307-330)
LICIA CARLSON, EVA FEDER KITTAY
Published Online: Sep 18 2009 11:37AM
DOI: 10.1111/j.1467-9973.2009.01609.x

Abstract | References | Full Text: HTML, PDF (Size: 161K)
Save Article

DisRespect interviews with Barb Farlow, Sam Sansalone

I’m re-posting this May 15th post, since Disrespect has just re-run an interview with Sam Sansalone about his daughter Katya from earlier this year. The directions below will allow you to get to Sam’s interview, which was re-run on 22nd October; the podcast should be up there for the next few weeks. The two are related not only in that the children have the same genetic condition, but were also treated in similar ways by the same hospital.

Below is the original blog post on the interview that DisRespect did in May 2009 with Barb Farlow and me on Barb’s daughter, Annie Farlow; it includes a transcript of the interview. If you want to see the footage of the talk that Sam gave, referred to in his interview, you can go to the post The Modern Pursuit of Human Perfection: The Full Story and then click on the two Living with Trisomy 13 posts within it. These videos are all now closed captioned and also include transcripts, thanks to Jackie Ostrem

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Many of you have likely been following the case of Annie Farlow (Here is a listing of all our Annie Farlow posts) and were looking forward to listening to yesterday’s radio interview of Barb Farlow and Rob Wilson by Geoff Langhorne. If you are unfamiliar with the case then this interview should provide a succinct introduction to the details of the case in an accessible form. The one thing perhaps unclear in the interview is that Annie was NOT a newborn, but 80 days old, and went in to the hospital 24 hours before her unexpected death. You can also get more from the recently-formed Justice for Annie Facebook group, which you’re welcome to join (it’s a closed group, which means you have to apply to join it), and the Annie Farlow website linked there.

The interview was broadcast on the CFMU (McMaster Unversity Radio) program DisRespect (Here is a little about the show and the program’s host) and is available for listening/download by doing the following:

1. Go to the CFMU website (http://cfmu.msumcmaster.ca/)

Growth attenuation therapy in Australia?

A law firm newsletter in Australia has done a detailed legal analysis on growth attenuation for disabled children because “there is anecdotal evidence that such requests by parents may be increasing.”

 http://hwlebsworth.ensoconsultancy.com.au/health_sept09/growth-attenuation-therapy.html 

They advise doctors to consider its ethical appropriateness cautiously and warn them not to agree to provide the therapy without the proper legal procedures to obtain valid authorization for the treatment. But this all sounds so matter of fact and worries me. I hope this does not mean that an international growth attenuation experiment has already been started.

Dr. Diekema’s latest paper is AAP statement on withdrawing nutrition from children

Forgoing Medically Provided Nutrition and Hydration in Children

 Douglas S. Diekema, MD MPH, Jeffrey R. Botkin, MD, MPH Committee on Bioethics

PEDIATRICS Vol. 124 No.2 August 2009, pp. 813-822

 

An excerpt from the abstract:

The American Academy of Pediatrics concludes that the withdrawal of medically administered fluids and nutrition for pediatric patients is ethically acceptable in limited circumstances. Ethics consultation is strongly recommended when particularly difficult or controversial decisions are being considered.

The Med Page Today has detailed information on this statement here. It says,

The AAP’s bioethics committee, headed by Douglas S. Diekema, MD, MPH, and Jeffrey R. Botkin, MD, developed a position statement outlining limited circumstances under which clinicians can ethically halt feeding and hydration in pediatric patients. “Medically provided fluids and nutrition may be withdrawn from a child who permanently lacks awareness and the ability to interact with the environment,” according to a statement published in the August issue of Pediatrics, the official AAP journal.

Dr. Diekema, the ethicist in charge of the Ashley case who has been trying very hard to make growth attenuation therapy into general practice,  is chair of the AAP committee on Bioethics now.

The new growth attenuation paper by Dr. Diekema, Dr. Fost with others

I read the full text of the growth-attenuation paper written by Dr. Diekema and Dr. Fost with others in the June issue of the Pediatrics. So many questions and mysteries again. I will point out some of them here for now. Some of the questions and mysteries will be reviewed more closely in my future posts.

1. The authors’ definition of profound cognitive disability “for purpose of growth-attenuation therapy” is not totally about cognitive disabilities but mostly about physical disabilities. It disguises the fact that growth attenuation is in fact a therapy that addresses problems caused by severe physical disabilities, not by cognitive disabilities, which they have been using as a convenient excuse for justification. But maybe we should also note that the authors didn’t forget to add “for present time” when they wrote that it should be limited to children with profound cognitive disability.

2. Their justification for excluding hysterectomy and breast bud removal from discussion is something like this: Criticism was mostly targeted at hysterectomy and breast bud removal in the Ashley case controversy in 2007 (implying maybe that growth attenuation was not all that criticized and pretty much approved?), and in addition, growth attenuation does not necessarily accompany the other two interventions. But these are lame excuses.

On the new growth attenuation paper

Thank you for your wake up call, Spirit of our time, and thank you also for inviting me to write here.

I share the concerns about the new growth attenuation paper that Spirit of our time expressed in his latest post. I also find his advice to read carefully and slowly totally relevant not only when you read his version of the abstract but when you read the original abstract as well.

There are some particular expressions that worry me a great deal, such as “the scientific rationale,” “informed responses to key clinically relevant questions,” and “potential clinically meaningful benefits of growth-attenuation therapy.” The implication here seems to me to be that this is a medical issue for doctors to consider scientifically, not for the court or the disability rights advocates to interfere with. That reminds me of Norman Fost’s pet theory that the court should have no say in medicine.

I also wonder if they are trying to ward off criticisms from disability studies or disability rights activists by confining the issue within medical argument. But then it also makes me wonder, as Spirit of our time has pointed out, what the working group discussion was all about . The WG had their first meeting in April 2008 and had revised draft (of whatever it might be) circulated for comments in December 2008. I wonder if the WG members were aware, while working as a group, of the fact that three of them were writing a paper independently to maintain that it is a safe and beneficial therapy to be recommended as one of the future choices for profoundly disabled children when they are around 3.

I’m trying to post a list of links to information about Norman Fost in my blog as soon as possible. But for now, you can get a quick idea of Norman Fost’s views by visiting the 2007 Pediatric Bioethics Conference page on the Seattle Children’s site and watch the webcasts of his presentations.