Indy Feminists, dozens of Indianans delivered a petition addressed to Gov. Mike Pence with over 2,700 signatures (now over 5,500) opposing House Enrolled Act 1337, which would make the Hoosier State just the second to ban abortion for genetic abnormalities and the latest entity to attempt further restrictions on fetal tissue research.Indiana residents are calling on their governor to veto a sweeping anti-abortion bill passed earlier this month by the state legislature. Led by the group
"Indiana has become one of the most dangerous states in which to be pregnant, now more than ever for those who would like to give birth," said Jennifer Kotting, communications director at the National Network of Abortion Funds and a South Bend, Indiana, resident. "In Indiana, you can be jailed for 20 years for having a miscarriage, and now [should Governor Pence sign the bill], if you experience difficulties in your pregnancy, you could also be risking prison, trauma or death."
The sexual and reproductive health and justice publication Rewire has tracked 32 separate anti-choice bills in Indiana over the past five years; HEA 1337 is essentially an omnibus bill stacked with all the provisions anti-choice legislators have been unable to pass outright or attach as amendments to other bills. The new provisions include unnecessary admitting privileges requirements for doctors (often impossible to obtain due to the ideology of hospital boards and/or doctors having to travel from out of state), stipulations that force patients to view ultrasounds and listen to the heartbeat of a fetus at least 18 hours before an abortion, as well as reporting requirements for minors that violate confidentiality by informing parents about minors' medical decisions. Also included are new, state-mandated "informed consent" provisions that are regularly used to deliver inaccurate medical information, similar to the well-known 2015 Arizona law requiring physicians to say that a non-surgical abortion can be reversed, even if it is already underway. HEA 1337 also implements a complete ban on fetal tissue research and requires that parents whose fetus is diagnosed with a "lethal fetal anomaly" receive information about perinatal hospice.
"Imagine traveling two to four hours to Michigan or Illinois just to get the medical care you need to survive."
"This bill is truly heartless and, as is true with other bills that seek to restrict abortion access, low-income people and people of color have not been considered and will be put in the most dire of situations," Kotting told Truthout. "Imagine traveling two to four hours to Michigan or Illinois just to get the medical care you need to survive."
The perinatal hospice provision is one of the more recent and underreported anti-choice tactics in state legislatures. Perinatal hospice centers provide vital care to families faced with the toughest of decisions concerning anomalies that are or may be incompatible with life and those who discover shortly after giving birth that their children may not survive. Requiring a parent who has made the decision that they want to spare their wanted child from unnecessary suffering to sit and listen to language written by anti-choice legislators has no foundation in medical ethics.
"Not to diminish the importance of perinatal hospice care at all, but it just seems like in this situation, this information is not particularly useful," Elizabeth Nash, the states issue manager for the Guttmacher Institute, told ThinkProgress in an interview about similar provisions in Alabama and Oklahoma in 2014. "It revisits painful issues that have already been decided. A woman has already ridden the roller coaster -- she got a diagnosis, talked it over with her doctor, and made her decision ... It doesn't make sense to re-open these wounds."
Opposition to the Bill
The bill is so extreme that some conservative legislators have spoken out against HEA 1337 and its predecessors. "The bill does nothing to save innocent lives. There's no education, there's no funding. It's just penalties," Rep. Sharon Negele, who sponsored a bill targeting Planned Parenthood last year, told CBS.
Rep. Sean Eberhart (R-Shelbyville) voted against the measure after talking to his wife whom he described as about "as pro-life as they come."
"Today is a perfect example of a bunch of middle-aged guys sitting in this room making decisions about what we think is best for women," Eberhart said. "We need to quit pretending we know what's best for women and their health care needs."
Writer and lifelong Indiana resident Victoria Barrett, who was with the group delivering the petition on March 14, couldn't agree more.
"This bill is not about protecting babies. A small portion of abortions in Indiana are chosen because of disability and, as far as anyone knows, none happen because of the baby's race or sex," Barrett said. "This law is about making political statements. Indiana's roads and bridges are crumbling and its schools are floundering, but the legislature spends all its time proposing bills to disenfranchise women and LGBTQ people because they get positive attention in conservative spheres for doing so. So this is theoretical to them -- they have no consideration whatsoever for the women and families whose lives they are impacting in such serious ways."
How the Bill Creates Additional Burdens
Indy Feminists advisory council member Harmony Glenn told Truthout that women of color and poor women would feel an undue burden should the governor sign the bill into law, as she expects him to based on his "pro-life" campaign promises.
"As long as this law is on the books, I will not risk another pregnancy in this state."
"The ultrasound requirement -- 18 hours in advance -- puts a burden on every patient not living in one of the four counties (out of 92 in the state) with abortion clinics," Glenn said. "As these restrictions always do, they'll hit our vulnerable populations the hardest: those living in poverty or just above it -- a significant part of our state, thanks to at-will and 'right-to-work' employment laws that push down wages -- as well as Black and minority patients who are already experiencing a staggering gap in infant morality rates and other health care outcomes in comparison to white people."
Barrett said that when the Indy Feminists petition was delivered last week at the Indiana Statehouse, the overall feeling was "optimistic and empowered," even with the media present for the press conference assuming that no argument would sway Pence from signing HEA 1337 into law.
"The group was mostly made up of young women, and there was a great sense that, though the group was small, it was motivated and energized," Barrett told Truthout. "For me, personally, it felt a bit more fraught. This was the first time I'd returned to the statehouse since testifying against last year's abortion bill. It makes me so sad to scream silently into the void over and over, and to find out that almost nobody is listening."
In her testimony Barrett told the story of her 2013 abortion; she found out that the daughter she was expecting had trisomy 13 -- a condition that causes many infants to die within days of being born.
"Her development was so severely affected that it was a shock she hadn't already miscarried," Barrett told Truthout. "I had to choose: wait for a miscarriage, while carrying and caring for a doomed child, or terminate an unquestionably nonviable pregnancy. I chose to terminate."
While the current bill contains an exception for people facing pregnancies with conditions that are incompatible with life, one of the counseling provisions is directed at those families.
"[HEA 1337] requires us to be subject to counseling about perinatal hospital care -- counseling that will consist of required language written by the state, that will undoubtedly be coercive in attempting to persuade families to carry babies like mine to term, and that must be delivered at the time of diagnosis," Barrett said. "Pregnant women who've just learned their babies are dying will be required to participate in this counseling and sign documentation to be filed with the state affirming they have received such counseling."
Barrett says that enduring the hospice counseling "would have been devastating" and she and her husband may have chosen not to conceive again.
The Myth of Sex-Selective Abortion
Three months after she terminated the pregnancy described in her testimony, she became pregnant with a son; she and her husband are expecting a second and possibly final addition to their family. "We talked about whether we might want a third later, in part because I really wish I could have a girl, but as long as this law is on the books, I will not risk another pregnancy in this state," she said.
Like the vast majority of people, Barrett and her husband would not be discussing abortion as a possible way to select the sex of their potential future children. Conveniently ignoring this reality, however, anti-abortion groups and the legislators they support continue to claim that parents terminate pregnancies based on sex routinely enough that laws like HEA 1337 must be enacted to protect "unborn baby girls."
"Fetal tissue has been used in research in this country since the 1920s."
Sex-selective abortion has been repeatedly proven to be a myth that anti-abortion extremists are using to make their anti-choice bills sound like human rights legislation. Over and over, studies show that abortion is not the method potential parents use in this country to stack the deck for male children. As the International Human Rights Clinic at the University of Chicago Law School, the National Asian Pacific American Women's Forum and Advancing New Standards in Reproductive Health outlined in their 2014 publication "Replacing Myths with Facts: Sex-Selective Abortion Laws in the United States," there's simply no way to honestly portray abortion based on the sex of the fetus as any sort of phenomenon in this country; plenty of near-guaranteed fertility treatment-based procedures are available should prospective parents truly care about the sex of their child.
"Sex-selective abortion bans have not been shown to impact sex ratios in the United States," the groups behind the study wrote. "Sex-selective abortion laws are part of the legislative campaign of groups opposed to reproductive rights. The laws are generally proposed by legislators who are anti-abortion."
Scare Tactics Surrounding Fetal Tissue Research
Meanwhile, the restrictions on fetal tissue research could hamper efforts to understand and possibly treat a variety of conditions, including Down syndrome. This month, the Association of American Medical Colleges wrote a letter co-signed by 61 other medical institutions, pleading for the political attack on fetal tissue research to end.
"As leading academic medical centers and scientific and medical societies who conduct and support life-saving research, we have grave concerns about legislative proposals to restrict the use of fetal tissue for research," the association's letter states. "From therapies for end-stage breast cancer, diabetes, and Parkinson's disease to a promising vaccine for Ebola, vital medical research depends on continued use of fetal tissue under current laws and regulations. Fetal tissue continues to be an important resource for biomedical research."
This provision of the law is redundant, anyway. Not one of Indiana's six Planned Parenthood clinics donates fetal tissue for research, and neither of the two independent clinics left in the state donates fetal tissue for research either. In reality, there are only two states in the entire country -- California and Washington -- where fetal tissue programs currently take place.
"Our legislation is a testing ground for other red and purple states. What you see here is a blueprint for neoconservative efforts everywhere."
The attack on fetal tissue research has come from the doctored Planned Parenthood videos released this summer by indicted anti-abortion extremist and head of the Center for Medical Progress David Daleiden. His indictment and the exoneration of Planned Parenthood in more than a dozen states -- including Indiana -- has not ended the attempts to end fetal tissue research. In fact, the first congressional hearing on the use of fetal tissue (intended as an attack on Planned Parenthood but which has in practice focused on the ethics of the legal act of donating tissue from aborted fetuses for scientific research) began recently in the House, just as oral arguments for Whole Woman's Health v. Hellerstedt -- which will determine the landscape of abortion access in Texas and possibly the country -- were being heard at the Supreme Court.
This unrelenting refusal by conservative legislators to listen to experts and their own investigators on the ethics and necessity of medical research is unprecedented. As R. Alta Charo, the Warren P. Knowles professor of law and bioethics at the University of Wisconsin at Madison School of Law, said before the House Select Investigative Panel of the Energy and Commerce Committee this month, fetal tissue has been a vital, noncontroversial part of medical research for nearly a century.
"Fetal tissue has been used in research in this country since the 1920s, and NIH [National Institutes of Health]-funded since the 1950s," Charo wrote in her testimony summary. "It has saved the lives and improved the health of millions of people. Indeed, almost every American has benefited, in the form of vaccines for polio, whooping cough, tetanus, chicken pox and German measles."
Charo told Truthout that the addition of Zika -- a mosquito-borne virus causing outbreaks in Central and South America -- to that list has made fetal tissue research even more vital.
"We need to do research on tissue from aborted and miscarried fetuses that were exposed to Zika in order to understand how it is transmitted to the fetus and what kind of effects it has, depending on when in gestation the fetus was exposed," Charo added. "The CDC has actually posted information on its website calling for such fetal tissue and even saying it particularly needs neurological tissue, preferably with the structures and architecture as intact as possible."
Charo is unequivocal in emphasizing that fetal tissue research is ethical, and that it is unrelated to abortion choices.
"The research has been deemed ethical by federal review bodies going back a half a century, which have consistently found that donation has no effect on the decision to have an abortion or on the number of abortions," Charo testified. "For that reason, support for the research need not depend on one's views on abortion. And this is one of the reasons it has been supported by both Republican and Democratic administrations, and been specifically authorized for funding by Congress for a quarter-century."
With historic support from both parties and the addition of Zika to the list of ailments for which fetal tissue research is uniquely suited, Charo predicts that HEA 1337 would have an effect that actually contradicts legislators' stated intent.
"Given the uncertainty around the effects of exposure while pregnant, halting fetal tissue research might slow efforts to prevent those effects or at least let women know if chances are high or low of serious birth defects," Charo told Truthout. She added that this "in turn might actually lead more women to choose abortions," out of fear of giving birth to a child with a disability.
Reproductive Justice and Disability Justice
Critics of the bill argue that its promoters' claims to be standing in solidarity with the disability rights movement are highly disingenuous, given how these same Indiana legislators do not seem to care about disability issues when they are not tied to the curtailing of reproductive rights.
"The state's funding for care of disabled children and adults is among the worst in the nation," Barrett said. "[This bill] neglects to consider families at all. Can you care for a seriously disabled child? Do you have the resources? How will that impact your other children? Your ability to hold a job? Nobody is asking these questions. They're just grandstanding."
It's true that some advocates of disability justice are frustrated with the often-repeated or implicitly conveyed idea that the lives of people with disabilities are less worth living, or that the best choice to receiving the news that a fetus shows signs of a disability is to abort the fetus. However, even while seeking to spread awareness that living with a disability does not necessarily make a person's life less worthwhile or meaningful, many disability rights advocates argue that their efforts to counter the idea that people with disabilities "would be better off dead" through public education should not be seen as being in conflict with a total commitment to abortion rights. Certainly, no social justice advocate would want a law purportedly written to recognize their value to instead put a pregnant person in the position of carrying a child to term that will not survive. For many disability rights advocates, the answer is not limiting choice, but rather better public awareness and education about disability -- an awareness that is slowly working its way into the reproductive justice movement.
Lenzi Sheible, founder of Fund Texas Choice, wrote about the necessary inclusion of a focus on disability rights in the pro-choice movement in the wake of House Bill 2 passing in her state. As she listened to people explain why the 20-week ban was so horrific, she noticed that often the framework reproductive justice advocates used didn't reflect an understanding of the way ableist language affects people living with disabilities.
"I have a problem with the idea that certain fetuses are more available for abortion because of their apparently disabled futures," Sheible wrote. "The 'fetal abnormalities' argument actually does devalue the lives of real people. When we rely on that stance, we're trading on discourse that says, 'No one would want to live if they had disabilities like those,' or 'No one would want to take care of children with those kinds of disabilities.' What does that say about the people who are living with disabilities like those? That they should have never been born?"
Writer, community educator and disability justice organizer Mia Mingus has written and spoken about the value of all bodies and the need for intersectional language in movement work.
"We cannot fight for liberation without a deep, clear understanding of disability, ableism and disability justice," Mingus writes. "The bodies of our communities are under siege by forces that leverage violence and ableism at every turn. Ableism is connected to all of our struggles because it undergirds notions of whose bodies are considered valuable, desirable and disposable."
Sheible recognized that adopting more sensitive language around disabilities also benefits all pregnant people faced with the choice of whether to continue or terminate a pregnancy.
"It would be better to use specific examples, such as, 'We need legal later abortions because sometimes fetuses are not viable,' or 'We need legal later abortions because people get medical diagnoses without the resources to make sense of them,' rather than, 'We need later abortions because sometimes fetuses are abnormal,'" Sheible said.
Glenn is also concerned about the attempt to prioritize some abortions over others -- supposed medical necessity versus pregnant people making choices based on their needs. As the full effect of anti-choice laws often can't be entirely predicted until they've been implemented, Glenn feels the grandstanding Barrett referenced and the vague language in HEA 1337 could threaten any Indiana resident in need of an abortion.
"The disability ban says both actual and potential diagnosis; every pregnancy could have a potential diagnosis," she said. "Also, there's no telling if those backup physicians will continue to facilitate admitting privileges once their information starts getting distributed [through the "documentation" requirement]. If they drop out, it could put access even more in jeopardy while they try and find new ones."
As the #Veto1337 campaign continues, activists in the state want people to understand that these types of laws are routinely passed in Indiana before other states where they receive more coverage. They urge people to pay attention to what's happening in their statehouse.
"Our legislation is a testing ground for other red and purple states," said Elle Roberts, Indy Feminists member and cofounder of SheHive. "What you see here is a blueprint for neoconservative efforts everywhere. I'd ask folks not from here not to write us off as if we're not working hard with few resources, as if what we're fighting won't be replicated."