Zika Virus Threat Puts Abortion Rights And Disability Rights On Collision CourseAs the epidemic spreads, women's right to an abortion are a hot topic -- but what about the rights of the disabled?
02/04/2016
Chloe Angyal
Front Page Editor, The Huffington Post
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As more cases of Zika virus pop up in the U.S., abortion rights advocates are raising concerns about whether harsh abortion restrictions will affect pregnant women’s ability to terminate pregnancies if they’re infected with the virus.
Zika has been linked to microcephaly, in which babies are born with underdeveloped brains and abnormally small heads. Some cases seen in Brazil and elsewhere in the Americas have been severe. As The Huffington Post reported last week, people born with microcephaly “may suffer from additional ailments, including convulsions, impaired vision and hearing, deformed limbs and severe breathing problems.”
In El Salvador, where abortion is completely outlawed, the government has advised women to simply not get pregnant until 2018. In Brazil and other Latin American countries, the outbreak has officials re-examining strict abortion laws. Here in the U.S., officials have stayed mum on the topic, but abortion rights advocates are rightly wondering what an increase in fetal abnormalities would mean at a time where abortion restrictions -- from lengthy waiting periods to laws designed to shutter clinics -- have left millions of American women without access to abortion care.
But if what the WHO calls an “explosion” of Zika does indeed lead to an uptick in fetal abnormalities in the U.S., the abortion rights movement faces another problem: a coming clash with the disability rights movement.
While abortion rights advocates might well point to Zika-linked microcephaly as evidence that the U.S. needs to liberalize abortion laws, disability rights advocates might argue otherwise. On the issue of abortion, the feminist and disability rights movement often come into uncomfortable conflict as they struggle to accommodate both the rights of a woman to control her own fertility and the rights of people with disabilities to exist.
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Pro-choice supporters rally outside the Supreme Court in Washington, D.C., Jan. 22, 2016, during the annual March for Life 2016.
Now, with the threat of Zika-linked fetal abnormalities looming, that fault line could well crack open, and at least one thought leader in disability rights is concerned by the hastiness with which calls for loosened abortion restrictions are being made.
There are clear parallels between the experiences of women and those of people with disabilities (not to mention overlaps between the two groups), noted Rosemarie Garland-Thompson, a professor of English at Emory University and a pioneer of the discipline of disability studies. Through much of history, she said, able-bodied women were not allowed to control their own reproduction.
“There’s a long, deep and troubling history of women’s reproduction being taken over by men and by a variety of other cultural institutions,” she told HuffPost. Likewise, people with disabilities have long been subject to reproductive coercion, from the abandonment of newborns with disabilities to mandatory sterilization of women with disabilities. They have, said Garland-Thompson, “been eugenically eliminated from the world through selective abortion and other biomedical practices.”
Both groups have similar histories of subjugation, particularly around medical decision-making. And on the issue of access to abortion, particularly in the age of prenatal fetal testing, those histories collide.
It’s important to note that the causal connection between Zika and microcephaly has not been clearly established. In Colombia, for example, many cases of Zika have been reported, with no corresponding increase in microcephaly. “I think everyone is concerned about that and with good reason, but we don’t know that 100 percent for sure yet. It’s not completely established," said Dr. Anne Davis, a practicing OB-GYN and an associate professor of Clinical Obstetrics at Columbia University.
And, though this week saw the first U.S. case of sexually transmitted Zika, most reproductive rights organizations are calling for a measured response, while the CDC is warning pregnant women to postpone travel to areas affected by Zika.
Complicating the abortion issue is the fact that microcephaly in a fetus cannot be detected until well into the second trimester of a pregnancy. “Late in the first trimester you can see the complete absence of the brain, anencephaly, but not microcephaly,” says Davis, who is also an abortion provider who performs second-trimester abortions.
This presents a problem if microcephaly cases spike in the U.S. One percent of abortions performed in the U.S. happen in the second trimester and when they do, they usually happen because of a threat to the life of the mother or due to fetal abnormalities.
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Luiza, who has her head measured at the Mestre Vitalino Hospital in Caruaru, Pernambuco state, Brazil, was born in October with a head just 11.4 inches in diameter, more than an inch below the range doctors define as healthy.
Abortion at this point in a pregnancy is rare and hard to come by. It’s expensive -- often well over $1,000 -- and that’s before you factor in the cost of traveling and accommodation to see the few providers who perform the procedure, skipping days of work for travel and recovery (and waiting periods in between appointments, which some states require), securing childcare for any kids you might already have, and so on. “Once you detect [a fetal abnormality], it’s not like you have an ultrasound and right that second they say ‘OK, if it’s the right choice for you, you can have your abortion,’” Davis says. The longer a woman waits -- to make her choice, or to raise the money to exercise it -- the more expensive the procedure becomes.
Pregnant women who choose to have an abortion when microcephaly shows up in fetal testing have an enormously difficult decision to make, Davis said. She does her best to explain to expecting families what they can expect their child’s life to be like. “It depends on the severity of the microcephaly,” she said. “There’s a range, and you do have some information about that from ultrasounds. We can guide families about the severity of what we see. And that’s where the real conversation occurs, doctor to family, doctor to woman. You can give people some guidance, it’s not just a diagnosis and then you say ‘well we’ll see what happens.’”
Still, it’s not an easy decision, as reproductive rights advocates acknowledge, and considering a potential child's quality of life is central to it. “What we argue for is empowered, informed decision-making,” says Ilyse Hogue, president of NARAL Pro-Choice America. “Women make decisions for all sorts of reasons, and no one walks in their shoes but them. At the end of the day, we could litigate every individual case, but that undercuts the core value that’s at stake, which is that we live in a country that prizes autonomy and information.”
Embedded in the calls for re-examining abortion policies as Zika looms is the assumption that aborting a fetus with microcephaly is ethical and that women will want and should have the right to ability-selective abortions. There’s little room, in the usual pro-choice argument, for the notion that that disabled child has the right to exist, or for questioning the notion that life with a disability is inherently worse than life without one. That having a child with a disability is undesirable is usually taken as a given, not just by pro-choice advocates, but by much of U.S. society.
Somehow, what got written into the idea of reproductive choice and freedom is the assumption no woman is prepared or would want to parent a child with a disability.
Rosemarie Garland-Thompson
Disability rights advocates argue otherwise. "Somehow, what got written into the idea of reproductive choice and freedom and self determination for women is the assumption that no woman is prepared or would want to parent a child with a disability," Garland-Thompson said.
She acknowledges that there are very real challenges involved in parenting a child with disabilities. Raising special needs children can be enormously resource-intensive, and is often done with limited government or other structural support. The same states that are narrowing abortion access “also offer almost no support for women who need quality care for special needs children,” Hogue observed.
Nicole Cliffe, editor of The Toast and the mother of a special needs child, expressed her frustration this week in a series of tweets. “We fail so terribly not just at providing disability resources, but for providing parents (esp[ecially] ESL parents) with the info to ACCESS them," she wrote. "My child needs such minor support and I do not know how people without money and/or education navigate the paperwork and services and hoops."
"It's days off work, it's out-of-pocket therapies until diagnoses kick in, it's fighting your insurance, it's becoming a full-time advocate," she continued. "A kid with disabilities born into poverty should be able to receive adequate support and care, and we just do not provide that.”
How is it just, abortion rights advocates rightly ask, that the government force women to bring children with disabilities into the world under these circumstances? Garland-Thompson isn’t unsympathetic to this argument, but she notes that it wouldn’t hold water were we to substitute “disability” for race or gender.
She blames the lack of public knowledge about the lives of people with disabilities for the widespread belief that ability-selective abortions are normal, desirable and ethical.
“Reproductive self-determination is understood as a kind of carte blanche for women to exercise basically a kind of set of discriminatory attitudes and practices,” she said.
To allow reproductive justice and disability justice to coexist more harmoniously, Garland-Thompson doesn’t advocate restricting reproductive rights any further than they’ve been curtailed. "I think what we have to do is rescript the story: the story of disability is almost always a grim one, particularly in terms of prognosis,” she says. The solution, she argues, is to expand reproductive choices, “but we expand them in a deliberative way. I don’t think we should have a no-questions-asked abortion policy -- we should have a lot of questions asked after viability.” The decision to terminate a pregnancy, she said, “should be a very deliberative process where there is full consideration of all the possible vectors of consideration for women, rather than just “holy shit, I don’t want to have a disabled kid.’”
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Daniele Ferreira dos Santos holds her son Juan Pedro, who was born with microcephaly, outside her house in Recife, Pernambuco state, Brazil.
It’s hard to imagine, in the current political climate, how American states might enact policies to genuinely encourage that deliberative process. Disguising hurdles to abortion access as a way of ensuring that women carefully consider their choices -- making them look at the ultrasound image, explaining to them what the fetus looks like -- is a favored tactic of the anti-abortion movement. The result, as Davis says, is that “abortion access has been shrunken down to the size of a postage stamp.” Garland-Thompson is calling for a genuine, non-coercive version of that process, but in the U.S. in 2016, it’s hard to imagine how to protect it from anti-abortion hijacking. She also calls for new policies and systems that will allow all parents, regardless of means and the abilities of their children to flourish.
While that sounds intensely desirable -- as a long-term societal project -- it doesn’t suggest an answer to the fiercely urgent question: what do we do now? What do we do if a few months from now, when mosquito season arrives, hundreds or thousands of low-income women in Texas and Florida find themselves pregnant with fetuses that show severe brain damage? What does ethical behavior look like in the here and now, in this political reality?
As is often the case when it comes to abortion, the stakes are high -- and there are no easy answers.
http://www.huffingtonpost.com/entry/zika-virus-us-abortion-disability_us_56b2601be4b04f9b57d83192
