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.

Article in St Louis Post-Dispatch (Missouri): Down syndrome advocates praise new law

CHESTERFIELD, Mo.— When Missouri Sen. John Loudon and his wife, Gina, decided to adopt their third child, they knew three things: They wanted a little boy, they would name him Samuel and he would have Down syndrome.

“This was always part of the plan,” said Gina Loudon as their now 3-year-old Sammy darted in and out of the living room in his slippers, giggling loudly.”We didn’t know much about how it was going to happen, but we just knew.”

The politically active couple with deep roots in the anti-abortion movement said their passion for Sammy spurred them to take legislative action on behalf of children with Down syndrome. It also put them in the center of an ongoing national discussion about genetic testing, the acceptance of people with disabilities and the type of information about Down syndrome that new or expecting parents were getting from their doctors.

Various studies estimate that 80 to 90 percent of parents who receive a prenatal diagnosis of Down syndrome through genetic testing choose to abort the fetus. Researchers believe this is the cause behind an 8 percent decline in people with Down syndrome in the United States in the past two decades.

PZ Myers on the Enhancement of Sexual Morality: A Modest Proposal

Continuing to catch up on good things elsewhere, found this sermon on the mount(ed) post on Pharyngula, which only gets funnier. Though not any funnier than the sign, which just reminds us all how much more out there than the rest of us those Brits are, Rev. Mullin excepted, who clearly needs to get out more often:

Effective Family Planning

The Reverend Peter Mullin doesn’t like those darn pushy homosexuals — they must make him feel uncomfortable and all squirmy deep down inside. He wrote some amazingly stupid things about gays.

The Rev Dr Peter Mullen said in an blog that homosexuality was “clearly unnatural, a perversion and corruption of natural instincts and affections” and “a cause of fatal disease”.

He recommended that homosexual practices be discouraged “after the style of warnings on cigarette packets”.

He wrote: “Let us make it obligatory for homosexuals to have their backsides tattooed with the slogan SODOMY CAN SERIOUSLY DAMAGE YOUR HEALTH and their chins with FELLATIO KILLS.”

What about the heterosexual women? Everyone forgets the loving ladies in these arguments. Do they also get chin tattoos? That would be a real shame. And then there are those heterosexual couples that engage in all of the same activities that homosexuals do — why do they get a free pass from the Rev. Mullen?

He also didn’t say a thing about cunnilingus, but they never do. Lesbians also always get a free pass, and it’s just not fair. I’m beginning to think they are god’s favored people.

Why Women Shouldn’t Marry

From my good friend RR at Chicana on the Edge, some reflection on mother-daughter team Cynthia and Hillary Smith’s recently revised book of this title (it’s an update of their 1988 book). Even her pic for this one is too irresistible not to steal, with the book being read on her recent belated honeymoon …

Cover of the book Why Women Shouldn

On the first day of our honeymoon, my husband and I wandered into a bookstore. I happened to notice one title, Why Women Shouldn’t Marry: Being Single By Choice and I picked it up. I was a spinster for too long to not find this book irresistible. My new husband indulgently carried it to the checkout counter for me.

I appreciate Cynthia S. Smith and Hillary B. Smith’s book. It acknowledges all the great reasons to get married, but asserts that too many women marry for bad reasons. With chapters like “The Soul Mate Myth,” “Why Divorced Women with Kids Shouldn’t Marry” and “Why Widows Shouldn’t Marry: You’ve Been Through Enough,” they have a lot of opinions I agree with. Their book rips into the cultural beliefs that a woman who isn’t married is less valuable and that marriage improves every woman’s life. I love the numerous stories of women who live independently, staying true to what they want out of life and refusing to let a man ruin their balance and stability.

Pollyannaism about polygamy: Martha Nussbaum on Mormon history

Picture of Martha Nussbaum

Back in May in a blog post on the University of Chicago Law School Faculty Blog, Martha Nussbaum offered some thoughts about both the history of Mormon polygamy in the United States and about attitudes toward polygamy more generally. I’m sympathetic to much of what Nussbaum says here but think that she’s wrong both about that history and about the more general attitudes in play.

Nussbaum critiques the negative views of American public opinion about Mormon polygamy, saying that

Mormon polygamy of the 19th century was not child abuse. Adult women married by consent, and typically lived in separate dwellings, each visited by the husband in turn. In addition to their theological rationale, Mormons defended the practice with social arguments – in particular that polygamous men would abandon wives or visit prostitutes less frequently. Instead of answering these arguments, however, Americans hastened to vilify Mormon society, publishing semi-pornographic novels that depicted polygamy as a hotbed of incest and child abuse.

While Nussbaum does acknowledge the patriarchal nature of (Mormon) polygamy, I suspect that she is both painting too rosy a picture of the history of Mormon polygamy, as well as mis-diagnosing the root of the distaste for polygamy in the popular mind. Such distaste runs deep alright, but the problem is not with polygamy per se. Below the fold is a bit more on each of these points, including some YouTube videos and transcripts, both serious and more humorous.

China’s one child policy, a generation on

Those interested in issues pertaining to population control and family planning might like to listen to this Australian Radio National podcast, which charts the history of the one child policy in China: it’s making, and its effects.

What’s in a Name? Well, Everything.

The Wall Street Journal has an article this week on a regulation being drafted by the Bush Administration regarding pregnancy, stating that the

proposed definition of pregnancy that has the effect of classifying some of the most widely used methods of contraception as abortion.

A draft regulation, still being revised and debated, treats most birth-control pills and intrauterine devices as abortion because they can work by preventing fertilized eggs from implanting in the uterus. The regulation considers that destroying ‘the life of a human being.’