16 May 2016 | 10:00 am
Over the past year, Indiana hasn’t exactly been a leader in anti-discrimination law. Last spring, the state faced massive protests and boycott threats for legislation that may have facilitated discrimination against lesbian, gay, bisexual, and transgender people. And this winter, nascent efforts to pass LGBT protections in hiring, housing, and public accommodations quickly failed.
But in March, the state did pass nearly unprecedented discrimination protections for one group: unborn fetuses. The new law prohibits abortions sought because of “race, color, national origin, ancestry, sex, or diagnosis or potential diagnosis of the fetus having Down syndrome or any other disability.” Doctors who perform them can be held liable in a lawsuit and sanctioned by Indiana’s medical boards.
Pro-life advocates celebrated the law’s passage. Indiana’s legislators wanted to make sure “ours is a policy that values life no matter who you are, where you come from or what your disability might be,” as the bill’s sponsor, Casey Cox, said.
But whether they intended to or not, these lawmakers exposed a set of difficult moral questions that pro-choice progressives tend to ignore in their quest to defend legal abortion. Should couples be able to abort their female fetuses—and it’s almost always female fetuses—in the hopes of having the boy they really wanted? Should a mom, ashamed at having a mixed-race baby, be able to abort because of race? Should parents give up on a baby with Down syndrome? What about Tay-Sachs, which almost always kills children by the time they turn four?
“It’s meant to put women in this queasy position of having to justify two things that might not fit together in one political belief,” said Carol Sanger, a professor at Columbia Law School. “Sometimes women abort for reasons we wouldn’t like—‘we’ being whoever the woman isn’t.”
What’s the right reason to get an abortion? That’s the question at the center of this law. Unlike other countries, such as the United Kingdom, the United States does not require women to give an explanation when they get an abortion. In 1965, the Supreme Court wrote that reproductive decisions are part of a woman’s “zone of privacy.”
The Indiana law does not require women to explain themselves, exactly. There’s no list of reasons why women can get an abortion—only why they can’t. Doctors don’t have to ask, either. Presumably, they’d only find out in the course of conversation or after a procedure like amniocentesis, which is used to determine the sex of the fetus and detect potential abnormalities.
It’s not exactly clear how this law will work in practice—if it gets put into practice at all. The ACLU and Planned Parenthood have filed a lawsuit against the measure, which will be heard before it goes into effect in July. But the questions the law raises—that laundry list of ethical quandaries—seem to be on the minds of legislators across the country, and they’re not going to go away, no matter the fate of Indiana’s law.
“Prohibiting sex selection isn’t addressing the real problem. The real problem is sexism.”
Right now, Indiana is one of only two states that prohibit abortions based on fetal abnormalities, according to the Guttmacher Institute (North Dakota is the other) and one of eight that prohibit abortions based on sex (along with Arizona, Kansas, North Carolina, Oklahoma, Pennsylvania, South Dakota, and, again, North Dakota). At least eight other states have recently introduced bills that would prohibit sex-selective abortions, according to Guttmacher, and at least six may ban abortions based on fetal abnormalities. Indiana is the only state that has enacted a prohibition against abortions based on race, although a new Illinois bill considers it.
These prohibitions come with a certain irony: The ACLU, for example, spends enormous resources fighting exactly the kind of discrimination these bills address, especially that which penalizes women, racial minorities, and people with disabilities. But because United States law doesn’t see fetuses as people, the organization doesn’t see a need to protect them from discrimination.
The reasons for putting these protections in place are “red herrings,” argued Jane Henegar, the head of the ACLU of Indiana. “It’s a tension that has been manufactured. It doesn’t really exist.” But in some places, the tension seems very real. While it’s difficult to track sex-selective abortions in the United States, for example, in countries like India and China where sex-selective abortion is widespread, the ratio of male-to-female births is significantly skewed and has changed demographics over time.
Progressives don’t line up neatly on these issues. Some feminists might defend sex-selective abortion, while it makes others uncomfortable. Pro-choice public-health officials have sometimes seemed to favor abortion in cases of a predicted disability: Jocelyn Elders, who served as surgeon general during the early years of the Clinton administration, once testified that “the number of Down’s syndrome infants in Washington state in 1976 was 64 percent lower than it would have been without legal abortion”—suggesting that preventing disabled children from being born is one advantage of legal abortion. And yet, some disability-rights advocates—who spend every day working to promote the value and well-being of marginalized people—argue that sex-selective abortion bans are missing the point.
The shift in gender demographics in some places in the world “is scary,” said Marsha Sexton, a lecturer at Berkeley who oversees research and training at the World Institute on Disability. “But prohibiting sex selection isn’t addressing the real problem. The real problem is sexism.”
Throughout her career, Sexton has worked at the sometimes-awkward intersection of the disability-rights and feminist movements. The goals of the former have not always lined up with the latter: As Sexton put it in a 2006 essay, “the reproductive-rights movement emphasizes the right to have an abortion; the disability-rights movement, the right not to have to have an abortion.”
“The vast majority of people have figured out how to have great lives with disabilities.”
“With prenatal testing and selective abortion, I think [disabled] people have thought about it differently because our lives are not informed by the stereotypes,” Sexton said. (She has spina bifida.) “People in the disability community—and that phrase is sort of like ‘the working class,’ it’s not like everybody is friends or subscribes to the same newsletter—we have a kind of common culture and a sense of shared values.”
Sexton said she’s not a fan of the Indiana law, but “the majority of people in the activist community would … [hesitate] to choose prenatal diagnosis and selective abortion” in response to a detected disability, she said.
“The vast majority of people have figured out how to have great lives with disabilities. The stereotype that people with disabilities are always suffering—we know that’s not true. That’s ridiculous,” she said. These stereotypes often shape people’s choices reproductive choices, she said, along with a lack of education about the resources available to people with disabilities and their families.
But it can often be difficult for mothers to know just what they’re getting into. Kim Dodson, who runs The Arc, a disability-advocacy organization in Indiana, pointed out the difficulty of definitively diagnosing potential disabilities in fetuses—especially when the term “disability” is so broad as to include any physical, mental or intellectual disability; physical disfigurement; scoliosis; dwarfism; Down syndrome; Albinism; Amelia; or “physical or mental disease,” as is true of the Indiana law.
“It puts a doctor in a very difficult situation,” she said. “A genetic condition is first detected … usually at 16 to 17 weeks, and in Indiana, you can only terminate your pregnancy until 20 weeks. That’s a very short timeframe for somebody to really get a grasp about how intense … the disability [is].”
Living with a disability—or caring for someone with a disability—can be difficult and expensive. Indiana offers a number of programs for disabled children, including a service called First Steps that provides therapy, equipment, and other resources to kids under the age of three. But that program isn’t free. Some families are eligible for a mix of federal and state subsidies on a sliding scale, Dodson said, but even relatively small payments can be a burden. Meanwhile, she said, funding for special education has not gone up in a “long, long time.”
Is the state “going to ensure that services are there for families of people with disabilities long-term?”
“If the state’s not going to step up and ensure that services and supports are there for families of people with disabilities long-term, after their birth,” she said, is it right to force women “into a decision when only she knows for sure what she is going to be able to provide for that child?”
From Dodson’s perspective, these abortion bans aren’t just about fetal health, or a right to life; they’re about what it means to live out that disabled life. Some people thrive, like many of the disabled staffers at her organization. But “we have just as many concerning cases as we do the positive cases,” she said.
She told one particularly harrowing story about a parent who considered murder/suicide:
I got a phone call one year around Christmas. There was a dad who was driving around downtown Indianapolis, and he couldn’t take his child home because her behaviors were so severe that he was very worried that she was going to harm her younger sibling at their house. We got him convinced that he needed to go to the emergency room at the hospital, and we worked through the back of the system to get things deescalated.
In some ways, it’s surprising that more states haven’t passed bans on abortions based on genetic screening or identity factors. These are real reasons why at least some women and couples are getting abortions, and they show why categorical support for abortion is complicated.
But just because they draft morally challenging legislation, pro-life lawmakers in Indiana aren’t necessarily intending to engage with the moral ambiguity of abortion.
“I think that, unfortunately, in this bill, people with disabilities were used to push forward a political agenda [of] some of the right-to-life organizations that, honestly, have never cared about disability-related issues in the past,” Dodson said.
No matter the reasons behind it, or whether it survives litigation, bills like Indiana’s can have a powerful cultural effect. After all, “discrimination” is a word used in the context of dignity-based rights; it’s part of the language of personhood. In the Indiana law, “They call [the fetus] ‘unborn child,’” Sanger, the Columbia professor, pointed out. “Usually a ‘child’ is a living person. We get this really beautiful rhetoric; we are subtly persuaded to think of the fetus as a child. The language works on us.” The more that happens, and abortion is talked about in moral terms, rather than entrenched legal ones, the more supporters of abortion rights will have to wrestle with questions that are uncomfortable to face.
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