New book on Buck v. Bell

Image description: The cover of Lombardo's book shows sepia-toned photographs of two women and an infant. Three Generations, No Imbeciles: Eugenics, the Supreme Court, and Buck v. Bell by Paul Lombardo

A new book by legal historian Paul Lombardo explores, in depth, the 1927 U.S. Supreme Court case Buck v. Bell in which Justice Oliver Wendell Holmes famously declared "three generations of imbeciles is enough." This was the case that legalized involuntary sterilization of the "feeble-minded" and gave great credibility to the American eugenics movement.

Lombardo details not only the needless cruelty of Holmes' statement, but also it's utter inaccuracy. As described by USA Today science columnist Dan Vergano:

The three generations in the case, Carrie Buck, her mother, Emma, and daughter, Vivian, it turns out weren't imbeciles; Carrie was an average student and Vivian, taken from her mother and placed in the home of the family whose nephew had fathered her, made the honor role once in her short life.

"Buck earns a place in the legal hall of shame not only because Holmes' opinion was unnecessarily callous but also because it was based on deceit and betrayal," writes legal historian Paul Lombardo of Georgia State University in Atlanta, in his just-released book, Three Generations, No Imbeciles: Eugenics, the Supreme Court, and Buck v. Bell. Scientists and lawyers, including Carrie Buck's defense attorney, conspired against her, Lombardo finds in old records.

The inaccuracy wasn't an accident. Carrie Buck was used and betrayed at every turn:

In reality, Buck was at the [Virginia Colony for Epileptics and Feeble-minded] because she had been raped and impregnated by the nephew of her foster family the year before. The family sent her to the colony, where her mother resided, to escape scandal. [Physician superintendent of the colony, Albert] Priddy "quickly began collecting information to demonstrate the hereditary defects he was certain linked Emma and Carrie," writes Lombardo.

The Buck decision was popular in its time and as a public policy even encouraged the eugenic Nazi philosophies of racial health and purity. From Vergano again:

It wasn't until national publicity about sterilization abuse in the 1970s that the practice ended. In 1942, the Supreme Court struck down involuntary sterilization of inmates, but the Buck decision has never been repealed.

"Eugenics still fascinates today," says Lombardo, invoked in debates over genetics testing, abortion and the future of medicine. "The attitudes are still around that fostered eugenics. They aren't going away."

Nobel laureate James Watson and the big liberal tent

Last month, scientist James Watson, who won the Nobel back in 1962 for his work in understanding the Double Helix structure of DNA, was busy apologizing for his remarks that Africans are less intelligent than other folks. Undercover Black Man reports this isn't even the first time this year the 79-year-old has been compelled to backpedal and apologize for offensive comments. Actually, he's got the sexism, homophobia and ableism going just as good as the racism, as noted in a Washington Post column by Michael Gerson:

In 2003, Watson spoke in favor of genetic selection to eliminate ugly women: "People say it would be terrible if we made all girls pretty. I think it would be great." In 2000, he suggested that people with darker skin have stronger libidos. In 1997, Watson contended that parents should be allowed to abort fetuses they found to be gay: "If you could find the gene which determines sexuality and a woman decides she doesn't want a homosexual child, well, let her." In the same interview, he said, "We already accept that most couples don't want a Down child. You would have to be crazy to say you wanted one, because that child has no future."

So let's just look at Watson for a moment. He's Mr. DNA. He was the head of the Human Genome Project, the mapping of our genes to determine which genes cause which traits, variations and health conditions. He's the guy who was in charge of discovering the most basic information about how human beings differ from one another. And his opinions about those differences? Africans lack intelligence, girls should be designed to be pretty, dark-skinned folk can't keep their pants zipped, and there's no problem or social loss to identifying and eliminating gay people and those with Down Syndrome before they're ever born.

These ideas Watson has about whose genes are good and whose are inherently bad are not random and unconnected. And I suspect it's also no coincidence that everything he's not (African, female, gay, developmentally disabled) falls short of being equal or worthy.

Gerson notes:

Watson is not typical of the scientific community when it comes to his extreme social application of genetics. But this controversy illustrates a temptation within science -- and a tension between some scientific views and liberalism.

The temptation is eugenics. Watson is correct that "we already accept" genetic screening and selective breeding when it comes to disabled children. About 90 percent of fetuses found to have Down syndrome are aborted in America. According to a recent study, about 40 percent of unborn children in Europe with one of 11 congenital defects don't make it to birth.

I don't know exactly how atypical Watson's beliefs are, but they're not as rare as Gerson indicates -- especially with regard to Down Syndrome and abortion. Gerson continues:

No one should underestimate the wrenching challenge of having a disabled child. But we also should not ignore the social consequences of widespread screening of children for "desirable" traits. This kind of "choice" is actually a form of absolute power of one generation over the next -- the power to forever define what is "normal," "straight" and "beautiful." And it leads inevitably to discrimination. British scientist Robert Edwards has argued, "Soon it will be a sin of parents to have a child that carries the heavy burden of genetic disease." A sin. Which leaves disabled children who escape the net of screening -- the result of parental sin -- to be born into a new form of bastardy and prejudice.

This creates an inevitable tension within liberalism. The left in America positions itself as both the defender of egalitarianism and of unrestricted science. In the last presidential election, Sen. John Kerry pledged to "tear down every wall" that inhibited medical research. But what happens when certain scientific views lead to an erosion of the ideal of equality? Yuval Levin of the Ethics and Public Policy Center, a rising academic analyst of these trends, argues: "Watson is anti-egalitarian in the extreme. Science looks at human beings in their animal aspects. As animals, we are not always equal. It is precisely in the ways we are not simply animals that we are equal. So science, left to itself, poses a serious challenge to egalitarianism."

"The left," Levin continues, "finds itself increasingly disarmed against this challenge, as it grows increasingly uncomfortable with the necessarily transcendent basis of human equality. Part of the case for egalitarianism relies on the assertion of something beyond our animal nature crudely understood, and of a standard science alone will not provide. Defending equality requires tools the left used to possess but seems to have less and less of."

Gerson apparently equates science with liberalism, and that correlation would be an interesting side debate, I suppose, though Watson certainly isn't sitting at the same progressive campfire as I am. Given his record, lets not pretend that Watson holds the liberal view of egalitarianism in any special esteem. Why does Gerson focus his criticism on liberalism? Possibly because the prejudices of the right are usually obfuscated by the anti-choice stance that does appear to accept developmental disability (and gayness and race) as part of the glorious diversity of human life, until it comes to funding things like special education or Head Start. Prejudices on the left can be seen as simple hypocrisy, something much easier to point a finger at.

Gerson says the "temptation of eugenics" involves a reductionism of individual human value into the tangible or quantifiable. While his point is an important one, and one I find especially important as a disabled feminist, he's reductionist himself in the way he shrinks the messy real-world issues of reproductive justice and choice for women into wobbly liberalism. And using Watson and his history of both scientific excellence and ideological bigotry to batter science and liberalism together is a cheap partisan strategy that fails to support the very people he criticizes Watson for devaluing.

h/t to Justice for All

Race as disability

Back in March the story of the Andrews family of Long Island came to public attention. The NY Daily News announced "What a mess, baby: Parents say fertility clinic botched in-vitro & girl's got the wrong dad":

A Long Island woman and her husband are suing a Park Ave. fertility clinic for allegedly inseminating her with the wrong man's sperm.

After struggling to conceive their second child, Nancy Andrews and her husband, Thomas, turned to New York Medical Services for Reproductive Medicine for in-vitro fertilization treatments, according to a lawsuit.

Andrews soon became pregnant and the couple was overjoyed. They only discovered the clinic's "colossal blunder" after Andrews gave birth to her daughter Jessica, court papers charge.

"While we love Baby Jessica as our own, we are reminded of this terrible mistake each and every time we look at her," the Commack couple said in documents filed in Manhattan Supreme Court. "It is simply impossible to ignore."

Thomas Andrews is white and his wife is Dominican. But Jessica, who was born Oct. 19, 2004, has darker skin than either of them as well as "characteristics more typical of African or African-American descent," the lawsuit states.

The couple tested their daughter's DNA using a home kit and later with two more sophisticated methods. All three of the tests confirmed their suspicions - the tot has a different father.

The story came to public notice in March because a judge ruled the couple can precede with their medical malpractice lawsuit but disallowed the claims of mental suffering -- the parents' suffering and baby Jessica's suffering for being a different race than her parents. There's a lot to unpack here and The Nation's Patricia Williams took a stab at it:

What's distinctive about the Andrews case is that the parents... tried to cite... Jessica's pain and suffering for having to endure life as a black person. The Andrewses expressed concern that Jessica "may be subjected to physical and emotional illness as a result of not being the same race as her parents and siblings." They are "distressed" that she is "not even the same race, nationality, color...as they are." They describe Jessica's conception as a "mishap" so "unimaginable" that they have not told many of their relatives. (Telling the tabloids all about it must have come easier.) "We fear that our daughter will be the object of scorn and ridicule by other children," the couple said, because Jessica has "characteristics more typical of African or African-American descent." So "while we love Baby Jessica as our own, we are reminded of this terrible mistake each and every time we look at her...each and every time we appear in public."

Since the claim of mental distress of their child hinges on appearance and public perceptions of skin color, Williams comments on the family's photo:

The picture underscores the embedded cultural oddities of this case, the invisibly shifting boundaries of how we see race, extend intimacy, name "difference." According to the Post, Mrs. Andrews is "Hispanic" and apparently, by the paper's calculations, one Hispanic woman plus one white man equals "a white pair." The mother is "a light-skinned native of the Dominican Republic," seeming to indicate that while she may not be "white," she's also not "black." Each narrative implies that if the correct sperm had been used, the Andrewses would have been guaranteed a lighter-skinned child. But as most Dominicans trace their heritage to some mixture of African slaves, indigenous islanders and European settlers, and as dark skin color is a dominant trait, it could be that the true sperm donor is as "white" as Mr. Andrews. But that possibility is exiled from the word boxes that contain this child. Not only is Jessica viewed as being of a race apart from either of her parents; she is even designated a different nationality--this latter most startling for its blood-line configuration of citizenship itself.

Paul Butler at BlackProf discusses the race issue as well.

If I understand the legal situation correctly, the parents' claim of mental suffering is essentially a "wrongful conception" or "wrongful birth" claim and their suit on behalf of Baby Jessica's mental suffering is a "wrongful life" claim. New York state, where the case resides, has precedence in these situations, which Manhattan Supreme Court Justice Sheila Abdus-Salaam cited in her ruling. Regarding the "wrongful birth" claim:

By logical extension of the principles enunciated by the courts in New York that the birth of an unwanted but otherwise healthy and normal child does not constitute an injury to the child's parents, and that even parents of a child with a serious disease cannot recover for emotional injury for the birth of that child, plaintiffs in this case cannot recover for mental distress arising from having a child who is not Mr. Andrews' biological offspring.... Plaintiffs cannot recover damages based upon their claim that they were deprived of the opportunity to have a child of their own genetic makeup. The Court of Appeals has rejected as too speculative a claim that is " . . . based essentially on "wrongful nonbirth", the deprivation of an opportunity by a woman to have a child by her husband.

While these types of lawsuits were originally an additional claim for malpractice issues like failed vasectomies or lack of medical information provided by doctors, much of the case law centers around the distinction of whether or not a child with disabilities is involved. And, of course, that determination hinges on the ability to diagnose that there's "something wrong" with a child at the time a suit is filed. In the Andrewses case, if Jessica had not been perceived as looking physically different from her parents, her genetic differences (in this case, the fact that her father was not a biological parent) may have gone forever unnoticed.

And because the wrongful life suit (rejected by the judge) on Jessica's behalf claims she will suffer physical and emotional stress from having darker skin than her family, race is made here to be a kind of disability. Disability, after all, is not only about actual impairments, but also perceived impairments -- the ADA recognizes this fact of the social stigma of disability.

While the specific circumstances (of botched reproductive technology leading to wrongful birth and life claims due to skin color) may be new, positing race or gender or ethnicity as a disability is not historically new. Disability is and has frequently been used as a method of demonizing or oppressing other minority populations. That goes back at least as far as Aristotle claiming that women are mutilated (read impaired) males. The medical definition of "hysteria" linked femaleness with mental instability. Irrespective of diagnosed intellectual impairments, black male schoolchildren in U.S. public schools are much more likely than other kids to be placed in special ed classes or considered behavioral problems. There are innumerable examples of oppressed minority identities having their identifying biological difference labelled as a disabling condition.

But culturally, we find it challenging to look at the dynamic from the other direction. Sandel's book (discussed briefly in an earlier, May 26, 2007, post) on the ethics of striving for genetic perfection asks:

Is it wrong to make a child deaf by design? If so, what makes it wrong -- the deafness or the design? Suppose, for the sake of argument, that deafness is not a disability but a distinctive identity. Is there still something wrong with the idea of parents picking and choosing the kind of child they will have? Or do parents do that all the time, in their choice of mate and, these days, in their use of new reproductive technologies?

What if, with an understanding of how elusive and intersecting categories of ability and identity are, that paragraph were rewritten to more closely discuss the Andrewses court case?

Is it wrong to make a child dark-skinned by design? If so, what makes it wrong -- the dark skin or the design? Suppose, for the sake of argument, that dark skin is not a disability but a distinctive identity. Is there still something wrong with the idea of parents picking and choosing the kind of child they will have? Or do parents do that all the time, in their choice of mate and, these days, in their use of new reproductive technologies?

Intersections between identities are never perfect, and matching women's oppression to racial oppression to disability oppression is never a perfect fit of history and experience, but the Andrewses case does beg the above questions about race. The references to "dark skin" could easily be changed to "light skin" to reflect the family's presumption of genetic whiteness, but the "problem" of skin color difference remains.

I confess that I don't know exactly how this court case illuminates the debates over prenatal screening and genetic engineering to avoid children with disabilities. But they are fundamentally related.


Cross-posted at Echidne of the Snakes

Update: Also posted at Racialicious

Screen all pregnancies

An article in The New York Times reports that the American College of Obstetricians and Gynecologists now recommends that all pregnant women, regardless of age, be offered screening for Down Syndrome. This is a change from offering screening primarily to pregnant women age 35 and older, and while the new guidelines are prompted partly by technology that makes early screening less dangerous to the fetus, the change also reflects what can only be described as a more comfortable relationship with the eugenic tendencies of prenatal screening to "screen out" flawed fetuses.

From the article:

In explaining the new recommendation, several physicians said the cutoff age of 35 had always been somewhat arbitrary. “Many women are unhappy with it, because it doesn’t mean anything to them; it’s kind of being put upon them,” said Dr. James Goldberg, a former chairman of the obstetrics college’s committee on genetics, who helped develop the new guidelines.

For example, Dr. Goldberg said, a 29-year-old woman and her partner might now choose amniocentesis instead of a blood test. In the past, the more invasive procedure was seldom recommended for younger women because it could sometimes result in miscarriage. Now the risk is considered to be quite low, and in any event, Dr. Goldberg said, for some couples “losing a normal pregnancy secondary to the procedure is not as problematic as the birth of a Down syndrome child, so they’re willing to take that risk.”

As I understand it, the old age-35 policy was based on balancing the concern of miscarriage of any fetus to the statistical probability of a woman giving birth to a child with Down Syndrome. As stated explicitly above by Dr. Goldberg, that balance is perceived to be shifting significantly enough to encourage wider screening practices. Implicit in his statement is the notion that a positive test result for Down Syndrome is alleviated with abortion, otherwise the risk would not be worth it.

Significantly, the NYT article does not associate this medical policy with societal perceptions of or supports (or lack of) for people with Down Syndrome. It does not recognize through further interview or research that women receiving a positive screening get significant pressure by both the medical community and society at large to abort fetuses with this largely nonfatal and highly variable condition. While the changing policy may provide more women with more information about their pregnancies, it will not provide that information in full cultural context and will not, apparently, include guidelines for how to best decide what to do with that information.

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On a separate note: The website for the medical organization issuing these guidelines reveals that uterine transplants are just around the corner.

Books for the new year

Happy New Year everyone!

Like every book lover I know, I've got a towering (and growing) pile of books waiting to be read. I thought I'd share a brief list of some books from that pile that I plan to read in 2007. All of these are disability-related and currently wedged between my full bookshelf and dresser. If you've already read them, are interested in discussing them, or happen to be the author, this is your heads-up to what I hope will be interesting future discussions here on wherever these books take us.

The Speed of Dark by Elizabeth Moon -- Moon won the Nebula Award in 2003 for this novel told from the perspective of a young autistic man. Normally a writer of military sci-fi, this story apparently differs from the author's usual genre and was prompted because she has a child with autism.

Geek Love by Katherine Dunn -- This will be a reread for me, but I haven't been back to it since I first found it at the fabulous feminist bookstore Women and Children First in Chicago when it was originally published in 1983. An amazing novel about carnival freaks and disability told in first-person by Olympia Binewski, a bald, humpbacked albino dwarf.

Crip Theory: Cultural Signs of Queerness and Disability by Robert McRuer -- From the Amazon description: "McRuer examines how dominant and marginal bodily and sexual identities are composed, and considers the vibrant ways that disability and queerness unsettle and re-write those identities in order to insist that another world is possible."

Planet of the Blind by Stephen Kuusisto -- Fellow disability blogger Stephen's first memoir.

My Body Politic by Simi Linton -- Author of the excellent Claiming Disability: Knowledge and Identity tells her personal story.

Blackbird Fly Away by Hugh Gallagher -- A personal memoir.

By Trust Betrayed: Patients, Physicians, and the License to Kill in the Third Reich by Hugh Gallagher -- A definitive book detailing the eugenics movement against disabled people in Nazi Germany. Gallagher also wrote FDR's Splendid Deception.

Wicked by Gregory Maguire -- I read this while in the hospital and unable to blog about it. An alternative telling of The Wizard of Oz from the Wicked Witch Elphaba's point-of-view. Disability and physical difference everywhere.

I also hope to read Jen Burke's A Life Less Convenient and Stephen's newest book, Eavesdropping, but I haven't bought them yet.

Going Native: Thanksgiving Day

During grad school I read Oglala Sioux Russell Means' autobiography Where White Men Fear to Tread as part of a three-student special conference course (we also read a book on Latina literary criticism and Connie Panzarino's autobiography) for my public administration degree. We discussed the problems Native Americans have had with the federal government throughout the history of the Bureau of Indian Affairs (BIA), and we talked about how controversial Means is among Indians.

Means admits to his own violent tendencies within his marriages, as I recall, but the thing he said that has stuck with me the most is this: Means claims that generations of Indian children were physically and sexually abused in the boarding schools they were forced to attend. In addition to being stolen from their families, punished if they spoke their native language and many sterilized when they reached sexual maturity, that is. That's how a civilized nation commits genocide.

Image: Photo of a Thanksgiving Day play at an Indian boarding school, ca. 1900. Eight grade-school children are pictured, one seated girl in white pilgrim costume and two boys standing behind her wearing long feathered Indian headdresses. The other five children are seated on the floor with the pilgrim girl and seem to be wearing dark-colored school uniforms. Their facial expressions are sober, or even glum. From the Minnesota Historical Society Visual Database.

Happy holiday to everyone.

Going Native: Native women, their rights and violence

A mini-slumgullion of links today on the topic of Native American women's rights and domestic violence:

TiyospayeNow: Fire Thunder Impeachment and the Rights of Women -- Jacqueline Keeler connects the recent impeachment of Cecelia Fire Thunder as Oglala Sioux tribal president to the rights of native women to reproductive freedom and safety from violence:

In addition to impeaching the president, the Oglala Tribal council went one step further than the state of South Dakota -- not only making abortion illegal under any circumstances, except life endangerment, but they made seeking an abortion, or helping someone seek an abortion punishable by banishment from the reservation. So, if a young women is a victim of incest or rape and seeks help from another woman to find an abortion clinic, she and her friend would be banished. Meanwhile, the tribal council resists efforts to deal as stringently with the issue of rape, incest and violence against women, so the men who perpetuate rape are not similarly punished.

Women's Space: Cecelia Fire Thunder, multiple posts -- Heart, who provided the above link to Keeler's eloquent writing, covers the events that led to Fire Thunder's impeachment. Lots of research and excellent links in her multiple entries.

Indian Country: Halting sexual violence -- A June article shows Fire Thunder's pro-choice efforts extend to addressing tribal problems of sexual violence:

Fire Thunder faces an impeachment hearing on June 29. She plans to fight for her office.

''The abortion issue,'' she said, ''is the key that opens the padlock to sexual deviancy that is occurring on the Pine Ridge reservation.''

Sexual deviancy is what Fire Thunder calls rape and incest: crimes that are rarely adjudicated on the reservation. The epidemic nature of the abuse is noticed in drug and alcohol treatment programs where, Fire Thunder said, 87 percent of women will disclose that they were sexually abused, many as children. The ultimate end of domestic assault is rape, what Fire Thunder calls the ''ultimate subjugation.''

Most women on the Pine Ridge reservation, she said, know someone who has been raped. And the stories pour out as women across the reservation start to talk: stories about children bearing male relatives' babies.

Rape victims in particular, Fire Thunder said, need to have the option to terminate the resulting pregnancy.

NOW: Native American women and violence -- Lisa Bungalia writes about the lack of law enforcement assistance for domestic violence victims in tribal areas:

In addition to domestic abuse, Native American women also experience the highest levels of sexual and domestic abuse of any group. A report from the American Indian Women’s Chemical Health Project found that three-fourths of Native American women have experienced some type of sexual assault in their lives. However, most remain silent due to cultural barriers, a high level of mistrust for white dominated agencies, fear of familial alienation, and a history of inactivity by state and tribal agencies to prosecute crimes committed against them.

Indian Country: Indian women rally against white Christian influence on tribal abortion ban -- At a rally just before the November elections where Fire Thunder failed to win back her presidency:

Fire Thunder and Cook-Lynn said American Indian voters have been influenced by the ideology of the Christian right, which they noted has no place in the political arena.

''This is an attack on women's rights that is ongoing; this is a national issue in Indian country.

''If they can tell you you can't have an abortion, they can tell you you must have one,'' Cook-Lynn said, referring to the practice of a few decades ago of sterilizing American Indian women without their permission.

''This is a result of colonization and Christianity; they don't teach reproductive rights,'' she said.

Domestic violence and tribal protection of indigenous women in the United States -- A lengthy paper written by two women professors at the American Indian Law Certificate program at the University of New Mexico School of Law that includes discussion of the role of Indian feminists in tribal solutions to the problem.

Governmentally coerced sterilization of Native American women -- A history of eugenics and genocide through depriving Indian women of their reproductive rights.

More links and resources for tribal domestic violence.