If a woman is carrying a fetus diagnosed as likely having Down Syndrome, she (and her family) have a complicated choice to make — continue the pregnancy, or end it. The state of Massachusetts is hoping to make that decision easier with additional mandated information about outcomes, life expectancy, and where a woman can go to get more support should she decide to give birth.
But is that a form of coercion? Or just providing full information? It’s a difficult question to answer.
Massachusetts has become the most recent state to pass legislation requiring doctors to give parents who have the prenatal diagnosis “up-to-date, evidence-based, written information” about the physical, intellectual and developmental outcomes of the chromosomal disorder, and treatment options….[T]here’s little doubt that the new approach is intended to make a woman think twice before automatically deciding to end her pregnancy. Previous studies have found that as many as 9 of 10 women choose to abort after they learn prenatally that their baby has Down syndrome. More recent scrutiny of data in three states — Maine, Hawaii and California — adjusted the percentage of women who terminate to 74%, according to an analysis published this year in Prenatal Diagnostics. In other words, it is the majority of women who opt to end their pregnancies.
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The new law specifies that the reading material given to women after a prenatal diagnosis be compiled from professional medical groups including the National Society of Genetic Counselors and the American College of Obstetricians and Gynecologists, along with local and national Down syndrome organizations. Studies have found that women often report that the information they currently receive is incomplete, inaccurate, or offensive.
Brian Skotko, co-director of the Massachusetts General Hospital Downs Syndrome program told Time that, “This wasn’t a pro-life bill, and it wasn’t a pro-choice bill. It was a pro-information bill.”
Of course, that statement has been used as the crux of arguments when it comes to any informed consent bill, so how is it that in this case it actually is true? Because unlike cases of informed consent laws, the women are experiencing wanted pregnancies and need to explore all of the options of what their lives will be like whether they carry to term, or if they terminate the pregnancy. Unlike a woman who seeks out a termination knowing she does not want to carry to term and give birth to a child, providing information isn’t a form of coercion, even if it is encouraging a woman to choose a particular path for herself.
The information, which has been vetted by unbiased medical professionals, allows women to be fully informed and make a decision with the assistance of their doctors, who will know about the additional physical issues such as heart problems and other complications. Informed consent bills meant to coerce women out of abortions, on the other hand, provide misleading and inaccurate info to try and convince a woman who has already decided she does not want to be pregnant into carrying to term despite her personal choice.
Providing information is only coercion when it is inaccurate and given only after a woman has already made her choice. The two laws have no relation to one another.
"Why did we take those steps? Because every day is a day where some number of women could potentially be misinformed about [their] reproductive options," Feuer said. "And therefore every day is a day that a woman's health could be jeopardized."
Three Los Angeles area fake clinics, which were warned last month they were breaking a new state reproductive transparency law, are now in compliance, the city attorney announced Thursday.
Los Angeles City Attorney Mike Feuer said in a press briefing that two of the fake clinics, also known as crisis pregnancy centers, began complying with the law after his office issued notices of violation last month. But it wasn’t until this week, when Feuer’s office threatened court action against the third facility, that it agreed to display the reproductive health information that the law requires.
“Why did we take those steps? Because every day is a day where some number of women could potentially be misinformed about [their] reproductive options,” Feuer said. “And therefore every day is a day that a woman’s health could be jeopardized.”
Feuer’s office in May launched a campaign to crack down on violators of the law. His action marked a sharp contrast to some jurisdictions, which are reportedly taking a wait-and-see approach as fake clinics’ challenges to the law wind through the courts.
Federal and state courts have denied requests to temporarily block the law, although appeals are pending before the U.S. Court of Appeals for the Ninth Circuit.
Some 25 fake clinics operate in Los Angeles County, according to a representative of NARAL Pro-Choice California, though firm numbers are hard to come by. Feuer initially issued notices to six Los Angeles area fake clinics in May. Following an investigation, his office warned three clinics last month that they’re breaking the law.
Those three clinics are now complying, Feuer told reporters Thursday. Feuer said his office is still determining whether another fake clinic, Avenues Pregnancy Clinic, is complying with the law.
Fake clinic owners and staffers have slammed the FACT Act, saying they’d rather shut down than refer clients to services they find “morally and ethically objectionable.”
“If you’re a pro-life organization, you’re offering free healthcare to women so the women have a choice other than abortion,” said Matt Bowman, senior counsel with Alliance Defending Freedom, which represents several Los Angeles fake clinics fighting the law in court.
Asked why the clinics have agreed to comply, Bowman reiterated an earlier statement, saying the FACT Act violates his clients’ free speech rights. Forcing faith-based clinics to “communicate messages or promote ideas they disagree with, especially on life-and-death issues like abortion,” violates their “core beliefs,” Bowman said.
Reports of deceit by 91 percent of fake clinics surveyed by NARAL Pro-Choice California helped spur the passage of the FACT Act last October. Until recently, Googling “abortion clinic” might turn up results for a fake clinic that discourages abortion care.
“Put yourself in the position of a young woman who is going to one of these centers … and she comes into this center and she is less than fully informed … of what her choices are,” Feuer said Thursday. “In that state of mind, is she going to make the kind of choice that you’d want your loved one to make?
Rewire last month visited Lost Angeles area fake clinics that are abiding by the FACT Act. Claris Health in West Los Angeles includes the reproductive notice with patient intake forms, while Open Arms Pregnancy Center in the San Fernando Valley has posted the notice in the waiting room.
“To us, it’s a non-issue,” Debi Harvey, the center’s executive director, told Rewire. “We don’t provide abortion, we’re an abortion-alternative organization, we’re very clear on that. But we educate on all options.”
Anti-choicers shame parents facing a prenatal diagnosis and considering abortion, even though they don't back up their advocacy up with support. The pro-choice movement, on the other hand, often finds itself caught between defending abortion as an absolute personal right and suggesting that some lived potentials are worth more than others.
There’s only one reason anyone should ever get an abortion: Because that person is pregnant and does not want to be. As soon as anyone—whether they are pro- or anti-choice—starts bringing up qualifiers, exceptions, and scary monsters under the bed, things get problematic. They establish the seeds of a good abortion/bad abortion dichotomy, in which some abortions are deemed “worthier” than others.
And with the Zika virus reaching the United States and the stakes getting more tangible for many Americans, that arbitrary designation is on a lot of minds—especially where the possibility of developmentally impaired fetuses is concerned. As a result, people with disabilities are more often being used as a rhetorical device for or against abortion rights rather than viewed as actualized human beings.
Here’s what we know about Zika and pregnancy: The virus has been linked to microcephaly, hearing loss, impaired growth, vision problems, and some anomalies of brain development when a fetus is exposed during pregnancy, according to the Centers for Disease Control and Prevention. Sometimes these anomalies are fatal, and patients miscarry their pregnancies. Sometimes they are not. Being infected with Zika is not a guarantee that a fetus will develop developmental impairments.
We need to know much, much more about Zika and pregnancy. At this stage, commonsense precautions when necessary like sleeping under a mosquito net, using insect repellant, and having protected sex to prevent Zika infection in pregnancy are reasonable, given the established link between Zika and developmental anomalies. But the panicked tenor of the conversation about Zika and pregnancy has become troubling.
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In Latin America, where Zika has rampantly spread in the last few years, extremely tough abortion restrictions often deprive patients of reproductive autonomy, to the point where many face the possibility of criminal charges for seeking abortion. Currently, requests for abortions are spiking. Some patients have turned to services like Women on Web, which provides assistance with accessing medical abortion services in nations where they are difficult or impossible to find.
For pro-choice advocates in the United States, the situation in Latin America is further evidence of the need to protect abortion access in our own country. Many have specifically using Zika to advocate against 20-week limits on abortion—which are already unconstitutional, and should be condemned as such. Less than 2 percent of abortions take place after 20 weeks, according to the Guttmacher Institute. The pro-choice community is often quick to defend these abortions, arguing that the vast majority take place in cases where the life of the patient is threatened, the fetus has anomalies incompatible with life, or the fetus has severe developmental impairments. Microcephaly, though rare, is an example of an impairment that isn’t diagnosable until late in the second trimester or early in the third, so when patients opt for termination, they run smack up against 20-week bans.
Thanks to the high profile of Zika in the news, fetal anomalies are becoming a talking point on both sides of the abortion divide: Hence the dire headlines sensationalizing the idea that politicians want to force patients to give birth to disabled children. The implication of leaning on these emotional angles, rather than ones based on the law or on human rights, is that Zika causes disabilities, and no one would want to have a disabled child. Some of this rhetoric is likely entirely subconscious, but it reflects internalized attitudes about disabled people, and it’s a dogwhistle to many in the disability community.
Anti-choicers, meanwhile, are leveraging that argument in the other direction, suggesting that patients with Zika will want to kill their precious babies because they aren’t perfect, and that therefore it’s necessary to clamp down on abortion restrictions to protect the “unborn.” Last weekend, for instance, failed presidential candidate Sen. Marco Rubio (R-FL) announced that he doesn’t support access to abortion for pregnant patients with the Zika virus who might, as a consequence, run the risk of having babies with microcephaly. Hardline anti-choicers, unsurprisingly, applauded him for taking a stand to protect life.
Both sides are using the wrong leverage in their arguments. An uptick in unmet abortion need is disturbing, yes—because it means that patients are not getting necessary health care. While it may be Zika exposing the issue of late, it’s a symptom, not the problem. Patients should be able to choose to get an abortion for whatever reason and at whatever time, and that right shouldn’t be defended with disingenuous arguments that use disability for cover. The issue with not being able to access abortions after 20 weeks, for example, isn’t that patients cannot access therapeutic abortions for fetuses with anomalies, but that patients cannot access abortions after 20 weeks.
The insistence from pro-choice advocates on justifying abortions after 20 weeks around specific, seemingly involuntary instances, suggests that so-called “late term abortions” need to be circumstantially defended, which retrenches abortion stigma. Few advocates seem to be willing to venture into the troubled waters of fighting for the right to abortions for any reason after 20 weeks. In part, that reflects an incremental approach to securing rights, but it may also betray some squeamishness. Patients don’t need to excuse their abortions, and the continual haste to do so by many pro-choice advocates makes it seem like a 20-week or later abortion is something wrong, something that might make patients feel ashamed depending on their reasons. There’s nothing shameful about needing abortion care after 20 weeks.
And, as it follows, nor is there ever a “bad” reason for termination. Conservatives are fond of using gruesome language targeted at patients who choose to abort for apparent fetal disability diagnoses in an attempt to shame them into believing that they are bad people for choosing to terminate their pregnancies. They use the specter of murdering disabled babies to advance not just social attitudes, but actual policy. Republican Gov. Mike Pence, for example, signed an Indiana law banning abortion on the basis of disability into law, though it was just blocked by a judge. Ohio considered a similar bill, while North Dakota tried to ban disability-related abortions only to be stymied in court. Other states require mandatory counseling when patients are diagnosed with fetal anomalies, with information about “perinatal hospice,” implying that patients have a moral responsibility to carry a pregnancy to term even if the fetus has impairments so significant that survival is questionable and that measures must be taken to “protect” fetuses against “hasty” abortions.
Conservative rhetoric tends to exceptionalize disability, with terms like “special needs child” and implications that disabled people are angelic, inspirational, and sometimes educational by nature of being disabled. A child with Down syndrome isn’t just a disabled child under this framework, for example, but a valuable lesson to the people around her. Terminating a pregnancy for disability is sometimes treated as even worse than terminating an apparently healthy pregnancy by those attempting to demonize abortion. This approach to abortion for disability uses disabled people as pawns to advance abortion restrictions, playing upon base emotions in the ultimate quest to make it functionally impossible to access abortion services. And conservatives can tar opponents of such laws with claims that they hate disabled people—even though many disabled people themselves oppose these patronizing policies, created to address a false epidemic of abortions for disability.
When those on either side of the abortion debate suggest that the default response to a given diagnosis is abortion, people living with that diagnosis hear that their lives are not valued. This argument implies that life with a disability is not worth living, and that it is a natural response for many to wish to terminate in cases of fetal anomalies. This rhetoric often collapses radically different diagnoses under the same roof; some impairments are lethal, others can pose significant challenges, and in other cases, people can enjoy excellent quality of life if they are provided with access to the services they need.
Many parents facing a prenatal diagnosis have never interacted with disabled people, don’t know very much about the disability in question, and are feeling overwhelmed. Anti-choicers want to force them to listen to lectures at the least and claim this is for everyone’s good, which is a gross violation of personal privacy, especially since they don’t back their advocacy up with support for disability programs that would make a comfortable, happy life with a complex impairment possible. The pro-choice movement, on the other hand, often finds itself caught between the imperative to defend abortion as an absolute personal right and suggesting that some lived potentials are worth more than others. It’s a disturbing line of argument to take, alienating people who might otherwise be very supportive of abortion rights.
It’s clearly tempting to use Zika as a political football in the abortion debate, and for conservatives, doing so is taking advantage of a well-established playbook. Pro-choicers, however, would do better to walk off the field, because defending abortion access on the sole grounds that a fetus might have a disability rings very familiar and uncomfortable alarm bells for many in the disability community.