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Canadian Eugenics Survivor and Activist Leilani Muir Dies at Age 71

Posted by Natalie Oveyssi on April 7th, 2016


Leilani (O'Malley) Muir, a survivor of the Sexual Sterilization Act of Alberta, Canada, passed away on the weekend of March 12 at the age of 71.

Following an abusive childhood, Muir’s mother committed her to Alberta's Provincial Training School for Mental Defectives at the age of eleven, falsely claiming that she had cognitive disabilities. The Sexual Sterilization Act of Alberta allowed the province to sterilize any ward of a mental health institution whom its Eugenics Board considered "mentally defective" and at risk of transmitting “defective genes” to future children.

Under this act, nearly 3,000 residents of Alberta were sterilized between 1928 and 1972, when the law was finally repealed.

When she was fourteen years old, Muir was brought before the Provincial Eugenics Board and briefly questioned. After this session, the board recommended sterilization, citing as the reason "Danger of the transmission to the progeny of Mental Deficiency or Disability, also incapable of Intelligent parenthood."

Told doctors would be removing her appendix, Muir was sterilized without her knowledge. She only learned what had happened to her many years later when she and her husband were unable to conceive a child.

She grew determined to achieve justice for herself and others impacted by forced sterilization. In 1996, Leilani Muir became the first individual to sue the Alberta government for wrongful sterilization. She won her case, Muir v. The Queen in Right of Alberta, in a judgment that stated:

The circumstances of Ms. Muir's sterilization were so high-handed and so contemptuous of the statutory authority to effect sterilization, and were taken in an atmosphere that so little respected Ms. Muir's human dignity that the community's, and the court's, sense of decency is offended.
Muir's case served as a precedent for many more lawsuits against the Alberta government on behalf of hundreds of survivors of eugenic sterilization. All told, the government paid more than $80 million to over 800 survivors.

In the years following the court decision, Muir became an advocate for other sterilization survivors and for the rights of people with disabilities. She continued her quest to educate the public about the history of eugenics in Canada. Muir wrote a book about her life called A Whisper Past, gave talks around the country, appeared in several documentaries and television programs, and even ran for a seat on the Alberta legislature in 2000 as a New Democratic Party candidate. Muir was recently featured in the 2015 documentary Surviving Eugenics which documents the survivor narratives of Alberta’s provincial schools.

Muir said of her experiences:
When I was born, God made me a whole person. When they sterilized me, they made me half a person. You never get over that hurt. . . . I don't want this to ever happen again to other children. My philosophy is that history repeats, but as long as I keep talking about it, it will not happen again.

Leilani Muir will be remembered for her courage to speak out, her strength to fight, and her determination to seek a more just world.

More information:

1. About Leilani, Leilani Muir: My Story Will Inspire You.

2. Dambrofsky, Gwen. Alberta woman who successfully sued province for wrongful sterilization dies, Global News, March 16, 2016.

3. Eugenics, Canada's Human Rights History.

4. Muir, Leilani. A Whisper Past: Childless After Eugenic Sterilization in Alberta. Victoria, BC, Canada: Friesen Press, 2014.

5. Muir v. The Queen in Right of Alberta. 132 D.L.R (4th) 695. Court File No. 8903 20759 Edmonton. Alberta Court of Queen's Bench. Veit, J. January 25, 1996.

Previously on Biopolitical Times:





Will California Expand the Market for Women’s Eggs?

Posted by Marcy Darnovsky on April 7th, 2016


Currently, California – like many countries – allows women who provide eggs for research to be reimbursed for travel, lost wages, child care, and other expenses connected to the egg retrieval process, but not to be paid beyond that.

A bill sponsored by the American Society for Reproductive Medicine, the fertility industry organization, would overturn that policy, and allow researchers to pay thousands of dollars beyond reimbursement for women’s eggs.

Despite opposition from women’s health and public interest organizations, including the Center for Genetics and Society, AB 2531 sailed through the state’s Assembly Health Committee on April 5 with a 17-0 vote. It now goes to the Assembly floor, and after than to the state Senate.

What’s wrong with expanding the market for women’s eggs? After all, women are allowed to sell their eggs for other people’s fertility treatments. Here are key reasons it’s important to hold the line:

  • The health risks of egg harvesting are significant, but they’re woefully under-studied. A well-known and fairly common short-term problem is ovarian hyper-stimulation syndrome (OHSS), but no one is sure how many women get the serious – sometimes life-threatening – version of it. Data on long-term outcomes, including follow-up studies on reports of cancers and infertility in egg providers, are notoriously inadequate.
  • It is impossible for women to give truly informed consent if adequate health and safety information can’t be provided.
  • Offering large sums of money encourages women in need to gamble with their health. It’s what bioethicists call "undue inducement."
  • Women who provide eggs are not research subjects, despite the inaccuracy in AB 2531. In clinical studies, researchers follow the health outcomes of participants. In egg retrieval procedures, researchers are interested in acquiring eggs for raw material for their studies, not in effects on women who provide them.
AB 2531 would overturn an existing California law, authored in 2006 by then-state Senator Deborah Ortiz, a well-known champion of women’s health and medical research. It would also conflict with guidelines from the National Academy of Sciences, and with the rules of the California stem cell agency. All these policies state that women who undergo egg retrieval for research can be compensated for their expenses, but not paid beyond that.

This isn’t the first time the fertility industry has sponsored legislation to expand the market for eggs. An almost identical bill was vetoed by Governor Brown in 2013. His veto message said in part,
"Not everything in life is for sale, nor should it be....The long-term risks are not adequately known. Putting thousands of dollars on the table only compounds the problem."
Letters of opposition to AB 2531 were sent by these organizations and individuals:
Previously on Biopolitical Times:




Ma Na Sapna – A Mother’s Dream

Posted by Gabriele Werner-Felmayer & Carmel Shalev, Biopolitical Times guest contributors on March 23rd, 2016


Untitled Document

Valerie Gudenus was inspired to make her award-winning film on surrogacy in India, Ma Na Sapna – A Mother’s Dream(2013), by American sociologist Arlie Russell Hochschild’s work on the outsourcing of emotional services (The Outsourced Self: What Happens When We Pay Others to Live Our Lives for Us, 2012). As Gudenus says in an interview, she wanted to make a film about “how different worlds and different areas are connected through certain dependencies.” Following one month of research in India on her own, she and her team went there to shoot the film in the world’s largest surrogacy clinic: the Akanksha clinic, in Anand, Gujarat run by Dr. Nayna Patel. Indeed, the film shows surrogacy as an “amazing example of worlds being connected in a very interesting way” (Gudenus).

The clinic had already taken center stage in Zippi Brand Frank’s documentary Google Baby (2009), and it was key to sociologist Amrita Pande’s in-depth ethnographic work Wombs in Labor (2014) on transnational commercial surrogacy in India. Despite this existing coverage, Gudenus brings a new and sensitive view of the surrogate mothers who are otherwise largely invisible – whether in the public perception or to the customers from abroad whose babies they carry – and allows them to speak for themselves.

Over a period of three months, Gudenus and her team spent every day with the women either at the Akanksha clinic or in the home for surrogates which it runs in a secluded by-road. The film opens with Madhu, a surrogacy "scout" who recruits women to become surrogates. Heena donated eggs four times to pay grocery bills, and she wants to buy a small hut for her daughter.  She is one of six women the film follows. They live in the home with 70 others, many divorced or widowed, in close quarters that at one dramatic moment brings about a verbally violent fight.


Sometimes Dr. Patel (pictured above, far left) comes to visit. The distance between her and the women is tangible. She is the professional doctor, a powerful business woman who reigns benevolently over her domain and insists the surrogates learn to sign their names before they leave. The women call her "our mother goddess" and bow in reverence and gratitude to touch her feet. They are in service, living in confinement far from their own children, lying on their backs most of the time, subject to strict quality control with regimens of nutrition and invasive medical procedures, including hormonal injections throughout the pregnancy and 100% rates of cesarean delivery.



At some moments, it becomes evident that not everything is as the women expected. Bikhi (pictured below), for example, is carrying a triplet pregnancy. Three months into the pregnancy she is shocked and heartbroken to learn that the doctors want her to undergo embryo reduction. If she had known about the reductions, she says, she would not have come here. “That a child will be killed in my own womb is really shocking.” To her relief, ultrasound shows that two of the fetuses are conjoined twins already dead.[1]


Gudenus and cinematographer Gabriela Betschart created a gentle and respectful intimacy with the women whose stories they follow, without being intrusive. The film captures the atmosphere of a woman’s cosmos that seems quasi-intrauterine yet situated within a technologized environment of breeding. The sound track brings in the noises of machines beeping in the neonatal intensive care unit, and the clacking of plastic breast milk pumps in the wards where the women recover after giving birth.



Papiha (pictured below) is a central character. We see her first at an ultrasound test toward the end of her pregnancy. The camera focuses on her rather than on the screen. She is carrying twins and is told that they both weigh more than 2 kilograms. Her face shows she is proud and happy. Later she gives birth to twins, half drugged with partial anesthesia. Someone asks her: "What will you do with the money?" She answers, "I'll buy a house." Then she is left alone in the delivery room, sprawled on the surgical bed like a bundle of rags. "Her" couple will arrive only 3 weeks later, with the reason for the delay  unclear. Perhaps they are advised to wait, to make sure the babies survive and are healthy. Perhaps they were busy with their lives.



After five days she is pumping milk, which her husband takes to the infants. He wants a rickshaw, and that's what they get. Madhu says there are no houses available for the money the women earn, not any more, even in a slum.

After ten days, Papiha goes to have a look at the babies and hold them for the first time. One of them stops crying when she picks her up. A few days later she is taking care of them in her room, and she names them. When it appears they are not gaining weight she starts breastfeeding. But she says, "it's better not to think I'm their mother" because it would make her sad. When Papiha's couple finally arrive, the situation is awkward. They seem not to know what to say or how to thank her. She changes their nappies for the last time, obviously in inner conflict. The intended mother (pictured below, right) tells her "don't cry, come on, smile, visit us tomorrow at the hotel" but it is obvious that this is good bye.

Parul also stays for three weeks to give milk and is not happy when she departs. She says she gained money but lost the respect of her neighbors and friends. Her son stopped talking to her. The job is "bad:" it's seen as selling children even though it's legal with stamped papers.

“How can you make a film about somebody else’s feelings?” asks Valerie Gudenus in the interview. Well, you obviously can, if you are able to look and listen as carefully and sensitively to the stories of others as she did. Understanding and showing that there is a mother's dream for a better life is the way in which Ma Na Sapna gives so-called ‘surrogates’ a face, a voice and a touching human story.

Endnote:

[1] The condition is rare with only a few case reports and seems to be connected to in vitro manipulations causing trauma of the zona pellucida. Usually, the pregnancy of the unaffected fetus goes on without further complications. See Hirata T. et al. Conjoined twins in a triplet pregnancy after intracytoplasmic sperm injection and blastocyst transfer: case report and review of the literature. Fertil Steril 2009;91:933.e9–e12, doi:10.1016/j.fertnstert.2008.07.1730

###

Gabriele Werner-Felmayer is Associate Professor of Medical Biochemistry at Medical University Innsbruck working at the intersection between basic biomedical research and bioethics, and chairs the bioethics network Ethucation [Austrian unit of the International Network, UNESCO Chair in Bioethics (Haifa)].

Carmel Shalev is the founding chair of the Department for Reproduction and Society at the International Center for Health, Law and Ethics, Haifa University, and a member of Israel's National Bioethics Council.


Images via Ma Na Sapna and Akanksha Clinic





Dinosaurs are Extinct, but Normalization is Alive and Well

Posted by Emily Beitiks, Biopolitical Times guest contributor on March 22nd, 2016


My son hugs a stuffed dino. (Kachine Blackwell, used with permission.)

Untitled Document

This article was cross-posted on Disability Remix, the blog of the Paul K. Longmore Institute on Disability at San Francisco State University.

Lately, I’ve been learning a lot about dinosaurs. Or, I should say, my three-year-old son has been learning a lot about dinosaurs, and I have been caught in the crossfire. My mind is often churning to relate any new information I take in to my own passion of disability studies. I didn’t expect to find a link to dinosaurs… but I did.

Dinosaur science has advanced remarkably since my childhood. (Did you know, for example, that scientists now believe many dinosaurs had feathers?!)

But while our notions of what dinosaurs could have been is constantly evolving, we still cling to certain tenets of what I like to call “dinosaur normalization.” (I haven’t lexis-nexis’d it, but I think you just witnessed the birth of a completely original school of academic thought!)

Dinosaur normalization is the idea of prescribing what dinosaurs would have been like based on our own narrow worldview.

For a quick example of dinosaur normalization, when scientists first discovered the Iguanodon (see right), they assumed he had a rhino-like horn on his nose. After further skeleton discoveries, it turns out the Iguanodon actually has two horn-like thumbs, something we’ve never seen before.

But you don’t have to be an obscure dinosaur like the Iguanadon (that only three-year-olds and their parents are likely aware of) to be a victim of dinosaur normalization.

Here’s a children’s song about the stegosaurus:

My name is stegosaurus,
I’m a funny looking dinosaur….
My front two legs are very short.
My back two legs are long.
My body’s big, my head is very small
I’m put together wrong!

You know… a little judgmental. Plus, if the stegosaurus is “put together wrong,” isn’t that kinda our bad since we literally put them back together?

But even the almighty T-Rex is not spared from the hammer of normalization. There’s a general fascination with the T-rex’s tiny arms, each with two small claws. Many books ask: why did such a ferocious beast have such puny, useless arms? One fictional children’s film that I watched recently spent a solid 30 seconds joking at the t-rex’s expense.


When the newest movie in the Jurassic Park franchise was released, I was itching to see it for it promised a genetically modified dinosaur. I don’t condone genetic modification, but I thought this premise was brilliant, as it would allow the filmmakers to take all the scariest parts of dinosaurs and jam them together (which, inevitably, makes a really strong argument against genetic modification). Much to my surprise (and many other disappointed fans), the resulting dinosaur mostly just looked like a t-rex with longer arms and a full hand of claws. Sure, it had a few other hidden tricks but if you freeze-frame the film, that’s it. It’s as if there were a bunch of dino-fans who were sitting around saying, “I’m not afraid of the t-rex because its got those tiny arms. But if you had a t-rex with proportionate arms, well, now that’d be scary!”

There’s so much we are still learning about the t-rex. Scientists are now hypothesizing that the tyrannosaurus rex might not have made the ferocious roar we think of from the movies, but something more like a loud bullfrog croak. There’s also a lot of uncertainty about how fast the t-rex runs. Just yesterday even, an article announced the discovery of a pregnant t-rex, which is providing new data on egg-laying. So why aren’t we culturally more open to exploring what purpose the t-rex’s tiny arms might have served?  The paleontologists are, but the children’s books and films don’t seem to be.

The disability rights movement pushes us to rethink our assumptions about how the body is supposed to look and what the body is capable of. Many disabled performance artists celebrate how their bodies are “put together wrong” to show us what the anomalous body can do once you embrace creativity and challenge bodily assumptions (see, for example, the many examples in Sins Invalid’s film An Unashamed Claim to Beauty). While the disability movement is pushing us away from normal, our dinosaur education for our kids lags behind.

Everything about dinosaurs is so totally not normal. When I stop and think about dinosaurs, the t-rex’s tiny arms and the stegosaurus’s small head seem so completely uninteresting compared to how bizarre it is that there were dinosaurs like this once living in North America:


Or knowing that this dinosaur-relative once swam in our oceans…yikes!


That our normalizing tendencies have extended to a species from over 65 million years ago shows us just how far our counter-efforts to take down normalcy must also go.

I’m going to encourage my kid not to think twice about the t-rex’s small arms. That’s just how they look, and from what we know about the t-rex (his FAVORITE dinosaur), they were pretty bad-ass, small arms or not.

*Believe it or not, this is actually the second blog by someone at the Longmore Institute with a connection to dinosaurs. Read the other, about Pixar’s access features in The Good Dinosaur, here.

####

Emily Beitiks is Associate Director of Paul K. Longmore Institute on Disability at San Francisco State University, and a former staffer at CGS. Beitiks earned her Ph.D in American Studies from the University of Minnesota with the dissertation "Building the Normal Body: Disability and the Techno-Makeover". 

Images via Wikimedia, Creative Commons.





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