On April 12, Governor Jan Brewer signed a bill making Arizona the eighth state in the union to ban abortions beyond 20 weeks. Like most other laws of its kind, House Bill 2036 had been camouflaged as a measure against suffering, predicated on the notion that a fetus at 20 weeks can feel pain. Every woman who's ever been pregnant, however, knows what the law really means: Twenty weeks marks a crucial point in a pregnancy, when fetal abnormalities can be detected, often for the first time. Many women confronted with a grim prenatal diagnosis choose to have an abortion. Now, in Arizona, they can't.
As the latest maneuver to undermine the protections of Roe v. Wade, the 1973 U.S. Supreme Court decision that legalized abortion until at least 24 weeks, the "Pain-Capable Unborn Child" model has been gaining popularity. Nebraska was the first state to pass such a law in 2010; Idaho, Iowa, Alabama, Oklahoma, Indiana, and Kansas followed, as did Georgia in March (though lawmakers there agreed to allow abortion if the fetus has "a congenital or chromosomal anomaly that is incompatible with life"). Legislators in West Virginia, Kentucky, Louisiana, New Hampshire, Arkansas, and Mississippi are considering similar laws. Representative Trent Franks of Arizona has even authored one for the District of Columbia.
No scientific evidence exists to support the idea that a fetus can feel pain at 20 weeks. (Or in Arizona's case, 18 weeks, as the law uniquely starts counting from the first day of a woman's last menstrual period, which is typically two weeks before fertilization.) The part of the brain that registers such a sensation doesn't develop until much later. That fact didn't move Virginia state senators who were attempting to pass their own ban last January. But the testimony of a 42-year-old mother, Tara Schleifer, did influence one legislator. Sobbing at the podium, Schleifer told of how she agonized over ending a pregnancy at 21 weeks after learning that the fetus she carried would have required multiple open-heart surgeries and feeding through a tube. Senator Harry Blevins, a Republican, said that he could never imagine having to face such a decision himself, and cast the single deciding vote against the bill.
Such is the difficulty of enacting these laws: No one can predict all the reasons a woman might need or want to end her pregnancy at five months. The post-20-week abortion ban might preserve some healthy pregnancies, but it also forces women to deliver babies who will live for a few brief moments of extreme suffering-or to continue hopeless pregnancies that threaten their future fertility or even their life.
There is another important consequence. More babies will be brought into the world with chromosomal abnormalities such as Down syndrome, which occurs when a third copy of the 21st chromosome turns up in the DNA. People with Down syndrome have varying degrees of intellectual and developmental disabilities; some also require surgeries early in life to repair defective hearts. On the other hand, many a Down syndrome child has been brought into the world with love and gratitude and transformed his or her family's life for the better. But the birth of a child with any disability entails a certain societal responsibility. Even the healthiest of Down syndrome children will need special education, medical care, and social support. Depending on the child and the severity of his or her affliction, that education and care can run as high as $50,000 just in the baby's first year.
It would be logical to expect, then, that these new restrictions on abortion would be accompanied by increased public services for women and children-especially for children with developmental disabilities. The laws should also lead to stronger support for physically, intellectually, and developmentally disabled teenagers and adults-which is, after all, what the healthier and luckier of these babies grow up to be. You might expect the people passing these laws to rally behind the Patient Protection and Affordable Care Act, which bars insurance companies from turning anyone away based on a pre-existing condition; after all, no condition is more pre-existing than one you're born with.
But nothing of the sort is happening. Instead, even as state legislators are finding new ways to interfere with a woman's or couple's decisions about baby-making, they are reducing the services upon which families depend. Arizona legislators have been particularly harsh. In 2009, Governor Brewer closed her state's $1.6 billion budget gap partly by eliminating $155 million from the state's Department of Economic Security-money that had gone toward early-education and therapy programs for the developmentally disabled. The following year, the legislature tried to ax the state's $9 million Children's Health Insurance Program for low-income families, KidsCare. In 2011, state Senator Andy Biggs, who in campaign literature advertises himself as a pro-life Republican, proposed eliminating Arizona's Medicaid program, the Arizona Health Care Cost Containment System, altogether. That would have saved the state $2 billion but cost it $7.5 billion in federal matching funds.
"There have been a lot of impassioned speeches from my Republican colleagues about the significance of a child's life regardless of their disability, and about the value of human life," says Arizona House Minority Leader Chad Campbell, a Phoenix Democrat. "But when they do a budget, it doesn't include the concern for human life they talk about all the time." The Children's Health Insurance Program remains but with enrollment frozen as of January 2010. In 2008, KidsCare covered close to 65,000 children; now it serves 14,000. The waiting list for the program has grown to more than 100,000.
State Representative Kimberly Yee, a Republican from the Phoenix suburb of Glendale, sponsored the post-20-week abortion ban along with many other restrictions on women's reproductive rights. She has also defended health-care cuts since she took office last year. Yee declined repeated interview requests, but in an editorial she wrote for The Arizona Republic last year, she tried to explain her position. "Dangerous abortions on demand and unsustainable levels of government spending [are not] the best way to protect children," she wrote. But, she insisted, "protecting women and children have been priorities of this legislature, and priorities of mine."
Campbell doesn't buy it. "We're the only state in the country that doesn't fully fund its Children's Health Insurance Program," he says. "The hypocrisy in the statements of my pro-life colleagues is amazing."
The 20-week abortion ban is just one part of an accelerating nationwide movement to restrict women's reproductive choices state by state. It affects a much smaller group of women than do longer pre-abortion waiting periods, forced ultrasounds, or laws against administering abortion--inducing medication outside of a doctor's office. These efforts to prevent abortion are at odds with attempts-so far unsuccessful-among Republicans in Congress to deny funding to family-planning clinics, which have a documented record of reducing the number of abortions. But whatever the logic, both causes have the same net effect: Women with the fewest financial resources also have the fewest choices when it comes to having babies.
Unintended pregnancies are already five times as common among poor women as among more affluent women, according to the Guttmacher Institute, a nonprofit that tracks reproductive health issues worldwide. Those pregnancies are also more likely to end in abortion; forty-two percent of the women who had abortions in 2008 were living near or below the poverty line. While abortion rates among middle- and upper-class women declined in that same period of time, among poor women the rate went up 18 percent.
The post-20-week ban has its own set of consequences for financially stressed pregnant women. Better-off women with high-end private health insurance have access to advanced DNA sampling that can diagnose a risky pregnancy early, and even when those technologies fail, as they sometimes do, those women can travel to a more permissive state. Nor do women of means need weeks or months to scrape up the funds they need. Ever since Representative Henry Hyde, an Illinois Republican, attached his eponymous rider to the Medicaid budget in 1976, a woman who depends on Medicaid for her health care-a woman living close to the poverty level who already has children, for example-has had to find another way to pay for her $400 first-trimester abortion. That often means she has an abortion later than she would have preferred. It also might mean that her abortion costs more; the price goes up as the pregnancy progresses.
But what about the woman who wants to have her baby, chromosomal abnormality or no? "The lack of social and economic support for raising a child with special needs does contribute to women's decision-making," says Tal-cott Camp, deputy director of the American Civil Liberties Union's Reproductive Freedom Project. True reproductive freedom isn't just about having the right to end a pregnancy, she argues; it's also about not being "condemned to a life of penury" because you had a child.
A child with special needs throws that worry into keen relief. "Even when a family wants to bring that child into the world and doesn't want to consider anything else," Camp says, "they have to recognize that the cost to them and to their existing children is tremendous." Three-quarters of the time when women choose to have an abortion, according to Guttmacher, they do so because they believe they can't afford the child.
Various studies have found that between 60 percent and 92 percent of women given a prenatal diagnosis of Down syndrome elect to have an abortion. If you're someone who believes every zygote is a life-or perhaps even if you don't-it makes sense that you'd want to do something about those high percentages. The question is, what?
University of Pittsburgh genetics professor Elizabeth Gettig found that when she worked as a genetic counselor in North Carolina in the 1980s, nearly all the women who received Down syndrome diagnoses chose to end their pregnancies. In the 1990s, after Gettig moved to Pennsylvania, she noticed that far fewer women made the same decision.
That wasn't just because she was working in Pittsburgh, a city with a large population of Catholics and better support services for disabled children. It was also because new federal laws had been passed protecting the rights of people with disabilities. Among those laws was the Individuals with Disabilities Education Act (IDEA), which since 1986 has guaranteed early education and therapy to infants and toddlers with disabilities. Gettig has speculated that more women, after learning of their fetus's chromosomal abnormality, were willing to continue the pregnancy if they believed a social support network was there to help them.
Historically popular with both parties, IDEA's early--intervention program has had profound benefits for people with Down syndrome. In the first three years of any child's life, neurons grow axons, and synapses form in a way they never will again. For a child with disabilities, early brain stimulation can mean the difference between whether a five-year-old joins his peers in kindergarten or needs to attend a special school; it may keep the future grown-up out of an institution and allow her to work.
When you speak with women raising Down syndrome children, they start the conversation by talking about how grateful they are for early intervention. "We have amazing therapists," says Jaime Harman, an Army veteran in Sunrise, Florida, who is raising a son, Jaidin, with her partner Jen Berrios. Through Florida's Early Steps program, 13-month-old Jaidin is learning everything from how to sit up in a high chair to how to articulate the letter "S"-a difficult exercise for Down syndrome children, who have poor muscle tone.
Each state has its own version of Early Steps backed up with IDEA funding. All are true entitlement programs: No child with a qualifying disability can be turned away. Though some states ask higher-income families to pay nominal fees, there are no income caps, and by law they can't maintain a waiting list, because the services are too time-critical. If the state doesn't set aside the bare minimum for each child who comes into the program, it will lose several million dollars in federal matching funds.
States can opt out of early intervention, but as it's generally regarded as a sound public-health investment, so far none has. In the past few years, however, several have begun to threaten that they might. Arizona's Department of Economic Security abruptly dropped 2,200 families from its early-intervention program, AZEIP, during the state's 2009 budget crisis; after families and advocacy groups complained, Arizona was required to take those families back or forgo $1 billion in federal stimulus funds. An infusion of stimulus funds also helped Florida's program stay afloat for two years. But last January, Florida's Republican governor, Rick Scott, left Early Steps out of his budget.
"It was the first time the people who run the program weren't going to be able to sign assurances with the federal government that they could fund the program at the intended level," says Margaret Hooper, the public-policy coordinator for the Florida Developmental Disabilities Council. She and other advocates for the disabled launched a vigorous public-relations campaign to save the program and managed to persuade the legislature to allocate the $6.9 million that Early Steps would need to keep going. But the program still limps along. "It's funded at such a bare-bones level," Hooper says. "Every year there are so many more children on Medicaid, and every year Early Steps needs a few more million just to deal with what they need in the future." And every year, they're behind.
I can't imagine what it was like raising a child with Down syndrome before early intervention," says Jennifer Currier, mother to Elijah, a two-year-old with Down syndrome, and a four-year-old named Christopher. Currier, a Northridge, California, resident, is a former ballerina who teaches ballet and plans events for a living; her husband, Charles, is a professional stunt coordinator, who sometimes works enough in a year to qualify for health insurance with the Screen Actors Guild. When he doesn't, the adult Curriers get by with basic major medical care. But Elijah goes to six therapies a week, paid for by Medi-Cal, California's version of Medicaid.
Jennifer Currier never considered terminating her pregnancy when she found out, at 20 weeks, that her baby would be born with Down syndrome. "I could already feel him moving," she says. "It was never a question of 'if,'" she'd have her baby, she says. But "it was a big question of how. We knew this second child was going to need more. We were pretty petrified. Our number-one concern was financial."
Medi-Cal alleviated her worries, but not permanently: Currier is well aware that Medi-Cal is under serious financial strain. The state has slowly been transitioning pieces of the program to private managed-care providers, some of which have already denied care to adults. "California is going through so many ridiculous budget cuts," Currier says. "Having a child with special needs"-and being completely dependent on public assistance-"is scary for us. We don't really have an option to pay for these things out of pocket."
California is far from the only state with a yawning budget deficit and consequent plans to reorganize its Medicaid program. In Kansas, for instance, Governor Sam Brownback has proposed to hand off the state's entire Medicaid program, KanCare, to private managed-care providers. That worries advocates for people with developmental and physical disabilities, who know that while care for people with disabilities saves money when you add up public-health costs over the long term, it's expensive in the short term for insurers.
One of those worried advocates is a pro-life Republican who supported the 20-week abortion ban. "I'm sorry to say that a lot of my fellow pro-life people are tax-cuts-at-any-cost people," says Bill Otto, who represents Kansas's Ninth House District, in the rural east-central part of the state. "There are lots of people who believe that life begins at conception and ends at birth. It's really beginning to rub here. If you're pro-life, you need to be whole life."
Otto roots his philosophy in the teachings of the Reverend Charles Sheldon of Topeka, Kansas, who wrote the ultimate "What would Jesus do?" book, In His Steps. "Reverend Sheldon told us that the church was supposed to take care of people from birth until death, to look after the less fortunate. He told us what churches should do. Well, they didn't. They left it to the government. And so now the government has to step up and fulfill that role."
Some of his fellow Republican legislators have backed him up. But not enough. "We had a majority of people who signed a petition" to preserve state coverage for people with disabilities from the Medicaid reform," Otto says. "But leadership"-Brownback, especially-"kind of decides what goes and what doesn't. The governor is solidly saying we're going to cut the income tax, and that's what we're going to do. We might be able to get a majority to disagree with him, but he has a power of veto. And there's not the two-thirds we need to fix it" by overriding Brownback.
Ironically, it was Brownback, during his 2008 presidential campaign, who did the most to promote that "pro-life, whole-life" slogan Otto invokes. A group called Democrats for Life of America also uses the slogan to describe people like Congresswoman Marcy Kaptur of Ohio and former Congressman Bart Stupak of Michigan, who fought to keep any whisper of federal funding for abortion out of the Affordable Care Act. In 2010, Democrats for Life established the Whole Life Heroes political-action committee to promote more anti-abortion Democrats for elected office.
As a movement, however, Whole Life-ism has been claimed almost as an exclusive trademark by Jason Jones, president of the nonprofit Whole Life America, who wrote in 2010 that he was "greatly offended that [Democrats for Life] would use our name to undermine human dignity." Jones worked on Brownback's presidential campaign in 2007. He champions human rights and anti-poverty efforts in Darfur and the Sudan, while advocating church and community support to prevent pregnant women, children, and the elderly from falling into poverty. But the litmus test he applies to domestic politicians comes down to whether they voted for the Affordable Care Act-a law Jones has insisted, despite the Hyde Amendment and an executive order to the contrary, provides federal funds for abortion.
Not everyone who identifies as pro-life reads the health-care law that way. Sister Simone Campbell of the Catholic social-justice lobby NETWORK led a group of Catholic sisters in support of the ACA two years ago, "because contrary to some reports, we analyzed the bill and determined it did not provide federal funding for abortion. It also saved lives by extending health care to millions of people without health insurance. I'm appalled at current efforts to restrict funding for programs that feed hungry families or provide lifesaving health care to those who are ill. Those who advocate cutting programs that support life cannot in good conscience call themselves 'pro-life.'"
In February, former Alaska Governor Sarah Palin, famous mother of a Down syndrome child, wrote a story for the Daily Beast in which she talked about the challenges and rewards of raising a special-needs child. Her claims of compassion and gratefulness might have rung hollow for some, given the revenue-starving policies she's stood for as a candidate and pundit. But one story about her challenged child had to move the most Palin-hardened heart: "Trig is almost 4 years old now," she wrote, "and every morning when he wakes up, he pulls himself up, rubs the sleep out of his eyes, looks around, and then starts applauding! He welcomes each day with thunderous applause and laughter."
Jennifer Currier can relate to that. Elijah, she says, has a "very special social gift." Down syndrome children are often described as lacking boundaries and the natural shyness other children have, even early in life. Margaret Hooper describes it as "social naïveté," a quality that sometimes results in awkward situations later in life. "It's like if you give them the keys to the house, they'll invite everyone in the neighborhood to come in and visit," Hooper says. In a child Trig's or even Elijah's age, however, that same quality manifests in a boundless capacity for love-and even, Currier claims, a magical connatural empathy.
"I did some volunteer work for some researchers who were doing groundbreaking work to improve cognition for individuals with Down syndrome," she says. "One thing they said was that they're also looking at why it is that, whenever they test people who possess this extra 21st chromosome, they always test exceedingly high in their level of compassion. And so what is it about this extra genetic material that's aiding in this extra level of compassion? Does it mean that they could find something to help people who don't have compassion?"
Currier laughs, but she means it. "I told my older son, 'You're going to be able to teach Elijah a lot of important things as he grows up. But Elijah's going to be able to teach you how to give a really awesome hug.'"
It's hard to talk about Elijah's awesome hugs while analyzing the costs of supporting a child and defending abortion rights. It's almost as if the living child in all his or her peculiar glory doesn't belong in the same conversation as family economics and reproductive rights. Yet perhaps it's our discomfort with those kinds of conversations that fosters the hypocrisy of defending the unborn while cutting essential funding. "This is not a new conflict," says Adam Sonfield of the Gutt-macher Institute. "People have been making the argument for a long time that the people most prominent in the anti-abortion fight are the ones also opposed to many of the programs that would help women and families if they do have children."
When the Children's Defense Fund releases its Congressional Scorecard each year, evaluating members of Congress on how they vote whenever children's welfare issues come up, the lowest-ranking members are always pro-lifers. Rick Santorum-who on the day he withdrew from the race for the Republican nomination invoked the "pain and hardship" of raising his daughter-voted on behalf of children's welfare just 10 percent of the time during his last year in the U.S. Senate. Paul Ryan, who during his career in the U.S. Congress has voted 100 percent of the time in agreement with the National Right to Life Committee, has also drawn up a budget that would make massive cuts to Medicaid.
Perhaps Ryan and his cohort also have something to learn from whatever's embedded in that extra 21st chromosome. The contradiction between "protecting the unborn" while making widespread cuts to services for children and the disabled reveals a philosophy long on ideology and short on compassion. "If we really want to be a pro-child nation," Talcott Camp says, "we need policies that honor and respect and support whatever decision a woman makes about her pregnancy, whether it's to carry the pregnancy to term or end it. This skewed ideological agenda is costing us all dearly."
