h/t to Ken Bond; from Nathaniel Comfort at the Scientific American blog:
Is eugenics a historical evil poised for a comeback? Or is it a noble but oft-abused concept, finally being done correctly?
Once defined as “the science of human improvement through better breeding,” eugenics has roared back into the headlines in recent weeks in both Mr. Hyde and Dr. Jekyll personae. The close observer may well wonder which will prevail. The snarling Mr. Hyde is the state control over reproduction.
The Agony and the Ecstacy of Parenting a Child with Intensive Needs
by Dick Sobsey
This post is for parents of children or adults with MECP2 Duplication Syndrome but it is also for all parents of children or adults with intensive needs. It is about how having a child with intensive needs changes our lives so fundamentally… about how challenging and sometimes painful it makes our lives…. but also how it enriches our lives and makes our lives better in some ways. To read more: http://networkedblogs.com/NMw4h
As a follow up to the post in the first link below, here is a list of further related links on those wanting to know more. Thanks to a helpful anonymous reader of the What Sorts blog who provided most of the links below but who doesn’t wish to be identified. Folks in Oz: let us know if you have more information, are undertaking action, whatever.
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.”
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.
The Limelight Film Showcase, Day 2, is TOMORROW, i.e., Tuesday 18th October, 2011, at the University of Alberta campus in Edmonton. All events are in Myer Horowitz Theatre in the SUB Building, and the festival runs from noon until around 10pm and includes not only short and feature films, but also live dance and movement performances. Check out the schedule via the festival page here. All events are free and open to the public.
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.
People with disabilities often were targeted by the state for eugenic intervention. Such policies and practices continue to impact the lives of people with disabilities. The word ‘eugenics’ often invokes thoughts of forced sexual sterilization mandated by a governing body. It recalls to mind 19th and 20th century ideas about a ‘master’ race, the Holocaust and ‘forgotten crimes’. Yet, eugenics often is seen as a dark era of the past, a regrettable fragment of history, beliefs, ideas and practices from which modern society progressively has distanced itself. But is eugenics truly limited to the past?
Eugenics is not just an historical experience. It is, arguably, a contemporary and future topic of concern for people with disabilities and for disability study scholars. To understand why we need only look at how the concept and practice were understood by Sir Francis Galton, the person who coined the term, and the way in which eugenics practices have changed over time. In his 1883 book Inquiries into Human Faculty and its Development, Galtonintroduced the term as follows: “the investigation of human eugenics – that is, of the conditions under which men of a high type are produced.”
You can read the full article at the FEDCAN blog here
Oakland-based filmmaker Regan Brashear is launching her film FIXED: The Science / Fiction of Human Enhancement and is running a Kickstarter campaign to help with funding for the film’s clean-up. You can start with donations of $1 and up–details about the campaign and film here. The campaign runs until 9.03am EDT, August 31, so donate NOW. A brief excerpt from the site:
What’s the film about? What does “disabled” mean when a man with no legs can run faster than many Olympic sprinters? With prenatal screening able to predict hundreds of probable conditions, who should determine what kind of people get to be born? If you could augment your body’s abilities in any way imaginable, what would you do and why? From pre-implantation genetic diagnosis to neural implants and bionic limbs, researchers around the world are hard at work developing a myriad of technologies to fix or enhance the human body, but what does it mean to design “better humans” and do we want to? FIXED follows three remarkable people: Continue reading →
Dr. Diekema attested as a qualified doctor in a case of botched circumcision in the superior court of Washington in January 2006. What he said there is quite interesting when we think of his Ashley case justification. I find his views of “surgical risks” and “pediatrician’s moral and ethical responsibilities to analyze risk vs. benefit independent of parents’ desire” totally relevant to the “Ashley treatment” debate.
For example, he says, “Non-therapeutic procedures that involve excessive risk should be avoided. An appendectomy on a healthy child, who has no history or symptoms of an appendicitis and who is not undergoing an abdominal surgery for other therapeutic reasons, for instance, would not be ethically justifiable because the absence of benefit to the child would not justify the surgical risks.” Continue reading →
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
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.
The Seattle Children’s Hospital will hold the seventh annual pediatric bioethics conference in July. This year’s theme is “Who’s Responsible for the Children? Exploring the Boundaries of Clinical Ethics and Public Policy.” On the conference page of the hospital web site, they lay out some of the issues that will be discussed. One of them goes, “Should care to children be prioritized based on social, physical or mental health status?” and there are some examples of children such as:
Children who have expensive technology-intensive care needs, such as ventilators, dialysis or transplants?
Children with intellectual disabilities who require special resources, yet will remain dependant on society?
The National Theatre of Scotland will present with an original play based on the Ashley X case and its controversy. Robert Softley, wheelchair user, public speaker, actor and script writer who started the project four years ago, has written two posts on this in the theater’s blog. Continue reading →
Thanks to Velvet Martin for posting a link to the following video from CDO; her daughter Samantha features. What do people think of the message here? Community building around chromosomal disorder? A humanization of the dehumanized who “look kinda funny”? A tacit complicity with the medicalization of human variation (via the notion of “disorder”)? All of the above? Something else? Continue reading →