A report released this week by the Human Rights Watch documents the ongoing tragedy of Zika in Brazil. The Brazilian government has declared an end to the national public health emergency. Yet pregnant women are still becoming infected with the Zika virus, babies are coming into the world carrying the effects of Zika, and families will continue to care for their Zika-affected children for years to come. More broadly, the social, economic and environmental conditions that gave rise to and then exacerbated the Zika outbreak in Brazil have not changed. Sadly, many of these conditions are present in the United States as well. And while Zika has not wrecked havoc in the continental US (Puerto Rico has experienced significant Zika outbreaks), these same conditions are fertile ground for a multitude of public health disasters.
Environment and Infrastructure
I spoke with Margaret Wurth, a children’s rights researcher who spent a year interviewing nearly fifty women and girls who were pregnant or gave birth in two of the states most affected by Zika. She learned that Brazilian authorities warned women to spray their homes with insect repellant and to cover open water jars, “but there is only so much as individual can do.” In communities with erratic water supplies, people have no choice other than to fill tanks with drinking water. But these same tanks can quickly become breeding grounds for mosquitoes. The Human Rights Watch report also describes, “Untreated sewage flowing into open, uncovered channels, storm drains, roads, or waterways.”
Wurth recalls meeting a pregnant sixteen year old who did everything she could to protect herself and her fetus. She wore long sleeves, doused herself and her home with insect repellent and covered water jars in and near her house. She did not know, however, that Zika can be transmitted sexually. And she could not, of course, single-handedly clean up the standing water and sewage in her favela.
In the United States most communities have covered sewage disposal systems and household running water. Yet the American Society of Civil Engineers graded the country with a D+ in wastewater management in 2017. Their assessment is that more than $105 billion is needed for wastewater funding. With Congress stalled and no real plan for investing in infrastructure, this kind of funding seems unlikely. And while some states have reasonably good water and sewage systems, in other states – most notably Alaska and Mississippi – significant numbers of households lack both.
Reproductive Health and Rights
One in five of Brazilian mothers raising children with Zika syndrome are under the age of twenty. These young women were unlikely to have access to birth control. Given Brazil’s prohibition on abortion, women may turn to dangerous “backstreet” abortions. A young woman who especially touched Wurth’s heart underwent a clandestine abortion at the age of thirteen; she had become pregnant as a consequence of rape. Wurth met women who had used caustic acid to induce abortion. Facing the terror and the stigma of bearing a child with Zika-syndrome, these women risked their lives. Not all survived.
In the United States access to contraception and abortion are increasingly under attack. The Republican health care bills would further reduce access to reproductive health care through defunding Planned Parenthood and removing birth control from the list of basic services insurance must cover.
In Brazil, government efforts to educate about Zika are disproportionately aimed at women, implicitly absolving men of the responsibility to prevent transmission or to help raise children living with Zika-syndrome. “Mothers are overwhelmingly the primary carers for kids with Zika syndrome. It’s very challenging. They can’t continue working or going to school. They often need to travel long distances and fight with agencies and officials to get the services they are entitled to,” according to Wurth.
In the United States family planning is similarly delegated to women, especially in communities that do not allow comprehensive sex education in schools. An abstinence-only curriculum does not prepare young men to be responsible sexual partners. And, like in Brazil, American mothers – especially low income mothers – face suspicion when they request government services. Republican demands that food stamp and Medicaid recipients work at paying jobs will hit hard at mothers of disabled children.
The Way Forward
There are measures that should be taken in the short and long terms to prevent future outbreaks of diseases like Zika, and to support those who are most affected. Developing and maintaining safe water distribution and sewage systems in all communities is crucial. Women and girls need access to the full range of medical services, including contraception and abortion. Men must be educated to shoulder their share of the responsibility for sexual safety, family planning and child rearing. And families and communities must be able to rely on ongoing support to care for ill and disabled individuals.
It’s unclear if the Brazilian government’s declaring the Zika crisis over was naively optimistic or blatantly political. In any case, it is eerily reminiscent of the declaration that “America has the best health care system in the world” when all data show health care in the US ranking last among developed nations. There are important lessons for the US both in the underlying causes of the Zika disaster in Brazil and in the Brazilian government’s response. We ignore them at our own peril.
As Senate Republicans continue to craft a healthcare bill behind closed doors, a Trump Administration’s reported plan would exempt many employers from including contraceptive coverage in health insurance plans. While the Administration has framed their executive order as a protection of “religious freedom,” it is just one part of a frightening new wave of policies that will particularly harm women.
According to the Congressional Budget Office, millions of Americans will lose health insurance under the American Health Care Act (AHCA), already passed by the Republican House of Representatives. Low- and moderate-income Americans will lose the most because the plan decreases insurance subsidies and will eventually eliminate the Medicaid expansion.
This is especially troubling for women. Consistently, year after year, American women earn less than men. And according to the Department of Labor, women are more likely than men to be among the working poor. At the same time, women use more medical services and spend more on health care than men. They make more visits each year to primary care physicians and are more likely to take at least one prescription drug on a daily basis.
Under the House version of the AHCA and the Trump Administration’s order, women’s access to care through their insurance will decline. The bill eliminates the Affordable Care Act’s requirements for insurance plans to cover “essential benefits” like birth control and maternity care. Worse yet, this move will reduce the largest health safety net for women in the country. The Republican House plan singles out Planned Parenthood, prohibiting federal funding for one year after the law goes into effect.
Reduced access to birth control will lead to more unwanted pregnancies. Yet under the Republican House bill, qualified health plans cannot include abortion coverage except for pregnancies that present life-threatening physical risks and pregnancies that resulted from rape or incest. Not only does this reduce access to a needed medical procedure, but it also leaves questions about how to determine if a pregnancy is life-threatening or how to confirm if it’s a result of rape or incest. And it could potentially force women to prove—to the satisfaction of an insurance company—that she indeed was raped. This would certainly delay performing the abortion. Delays, in turn, present health risks to women.
The Republican House bill does allow insurance to pay to treat “any infection, injury, disease or disorder that has been caused or exacerbated by the performance of an abortion.” But legal abortions performed by a qualified medical provider in a suitable medical setting are extremely safe. While it is unlikely that the House’s intent is to encourage illicit abortions, this provision seems to acknowledge that an increase in unsafe abortions may be a consequence of the policy.
The Administration’s order and the Republican House bill will have devastating effects for women’s health in the United States. Our maternal mortality rate is already the highest among all developed countries. And while this rate is decreasing in nearly every other nation, it continues to rise in the U.S. Our high maternal death rate is in part the result of unplanned pregnancies – more than half of all pregnancies in the U.S. – and a health system that makes accessing care difficult, especially for new mothers. The President’s order, together with Congress’s “repeal and replace” bill, will only lead to more tragedy. Now, the Senate has the chance to take out these harmful provisions and reaffirm the value of women’s health.
This post is part of a blog carnival. Mothers, activists, healthcare professionals and researchers around the world have come together to ask the UN Secretary General to recognize April 11 as the International Day for Maternal Health and Rights. Please join by using #IntlMHDay
Without rights to safety and bodily autonomy, women may be prevented from carrying and raising children whom they dearly wish to nurture.
Without laws guaranteeing women’s right to choose when or when not to be mothers, they may be forced to endure pregnancies that endanger their health and well-being.
Without rights to clean water and air, adequate nutrition and stable housing, women may enter pregnancy already in poor health. Women whose health is compromised are more likely to suffer miscarriages, complications during birth, low birth-weight babies, infections during the post-partum period, insufficient milk and heightened rates of maternal and child death.
Without rights to paid maternity leave women may not have the financial resources to properly nurse infants or allow their bodies to heal after childbirth. And without access to appropriate, respectful and high quality health care, mothers may become too weak, tired, discouraged or sick to advocate for their rights and for the rights of their children.
The U.S. Healthcare “Non”-system
Maternal health in the United States — to be blunt — is not good. The US ranks 61st in maternal health standards, by far the worst rank among all developed countries. And among 25 of the wealthiest capital cities surveyed around the world, Washington, D.C. has the highest infant mortality rate, with babies from the District’s poorest wards dying at much higher rates than the city’s already high average.
The United States lacks a system of universal health care access. Although the Affordable Care Act (Obamacare) has expanded Medicaid eligibility for women and men living in about half of the states, local governors and state legislatures in the other half of the country have refused federal money to expand Medicaid in their states. Especially in the states that did not expand Medicaid, women may find that they get healthcare coverage temporarily while they are pregnant. This means that women’s health may not be optimal going into the pregnancy; there may be delays in prenatal care because they cannot afford to pay for the doctor visit to “prove” pregnancy; or that their eligibility ends too soon after birth or miscarriage. This sort of policy conveys a clear message that women’s health is not important in and of itself, but only insofar as the woman’s body is a baby-carrier.
Kim (all names used in this post are pseudonyms), a young Illinois woman, worked hard to balance college and her job. Though she managed to support herself, she could not afford health insurance, “I also tried to apply to public aid for a medical card [Medicaid], but they were telling me I have to have a child. They said that’s what I need in order to get help through the system. They make me think that they’re stupid, because, I mean, you have people out here like me with no kids and trying to go to school and trying to do the right thing, and I think we should also be helped. I was like, ‘Child, are you serious?!’”
In quite a few states, the eligibility threshhold for Medicaid is more generous for children than for adults. In these states, babies and children may be are eligible for healthcare coverage even when their mothers are not.
Jamie, a married woman in her early thirties, was diagnosed with gestational diabetes during her first and only pregnancy. The Illinois doctor told her that gestational diabetes put her at risk of developing type 2 diabetes later on. Her son was born with special needs, so Jamie left her job to stay home and take care of him. She and her husband were able to arrange Medicaid coverage for their son, and her husband was covered through his job, but the household income was too high by a couple hundred dollars a month for Jamie to be eligible for Medicaid. However, their income was too low for them to afford to pay for her as a dependent on her husband’s insurance. Jamie did have a few good years during which she would get her blood sugar tested at free health fairs held at churches and parks. Today, she has full blown diabetes.
The absence of a comprehensive healthcare coverage system creates a dangerous roller coaster for women.
This often seems to happen in Mississippi, for Alisha’s tubes were tied shortly after she gave birth. The reason for this, Alisha explains, is that the doctor encouraged her to get her tubes tied while she was still entitled to Medicaid by virtue of the pregnancy. A few months later, when she began menstruating, she experienced profuse bleeding. By this time, however, her Medicaid eligibility was over and she was not able to afford a medical assessment or treatment. “It started with the heavy, heavy bleeding and the days lasted longer,” Alisa explains, “And then it started with it going longer and longer into periods being heavier and harder for me. Sometimes I just lie on the floor and push real hard until it’s time and then get up and get on the toilet and then the blood clot comes. So I have periods like that now.”
Mothering in the Shadow of the Correctional System
The health challenges faced by low and moderate income American women are exacerbated when they are caught in the correctional system. The United States has the highest incarceration rate in the world – and the gap between U.S. rates and those of the next most incarcerating countries are even higher for women than for men.
At this time, more than one million women are under the control of the United States correctional system. Most of these women are mothers of minor children and the majority of these mothers lived with their children before entering jail or prison.
According to the Center for Investigative Reporting, doctors sterilized as many as 148 women inmates in California prisons during the five-year period from 2006 to 2010. Women can be shackled during labor or delivery in most U.S. states. Incarcerated women struggle to obtain routine prenatal services, and the majority of newborns are separated from their incarcerated mothers immediately following birth.
Kristin from Massachusetts went to prison for the first and only time in her life immediately after giving birth to her second child. (The state kindly allowed her to wait to start her sentence until the baby was born.) At her request, her married brother and his wife took custody of her eight year old son and her newborn baby. Shortly afterwards, the brother and his wife found it difficult to cope with behavioral problems the older boy began to exhibit when his mother was taken away. At Kristin’s initiative, the department of Social Service (DSS) placed him with foster parents who seemed well able to care for the boy. A year later her son was placed with a single man in his forties who has asked to adopt the boy. Kristin is suspicious of his motives in wanting to adopt a ten year old with special needs and cannot understand why the Court feels that he is a preferable parent to her – even after she finished serving her sentence for a non-violent crime. There is no record, evidence or even accusation that she ever abused or neglected her children, and the boy desperately wants to come home with his mother.
With all of this going on, Kristin found out that she was pregnant. This was an unplanned pregnancy, for at 41 years of age she thought that her childbearing years were over.
By the time, Kristin was able to see a doctor, who showed her ultrasound images of the fetus, SHE felt that she could not have an abortion. The various lawyers and social workers involved in her custody cases are outraged at her decision to continue the pregnancy, seeing it as “irresponsible”. Caseworkers have threatened that by going through with this pregnancy rather than having an abortion, she will “lose any chance” of regaining custody of her other children.
Kristin’s loss is not a rare event. Across the country in Idaho, a friend watched Child Protective Services rip a baby from the arms of a woman who had just given birth. This woman’s child was taken from her because her drug use was seen as a danger to her children. “She asked for help,” her friend explains, “She failed her drug first test, but passed every one since. She is clean and committed to staying that way.” To make matters worse, CPS deemed the woman’s family members as unacceptable to take the child because they do not live in the same state. She has no money for a decent attorney and is looking at a hard road ahead. “Today I will watch them rip her three year old son from her arms too,” her friend says, “The baby was born with no drugs in the system. A perfect healthy 7 pound 3 ounces bundle of love. I’m sad and mad today.”
I share both the sadness and the anger. If there were any evidence that removing children from mothers like Kristin actually benefited children or mothers, I might feel differently. But children put into state foster care systems tend not to do well: they typically move from placement to placement, each time switching schools, doctors and caregivers. They are more likely than other American children to be overmedicated with cocktails of psychotropic prescription medication. And while some mothers may respond by trying as hard as they can to stay off drugs and to jump through every hoop demanded by every caseworker and judge involved in the case, some mothers become so despondent that, as one mother who lost her children told me, “After that happened I just gave up. When I had my kids, I admit, I sometimes used [drugs] but I always kept it under control – just small amounts on a Friday night, never in front of them, never got so high that I didn’t take care of them. But once they were gone I was off and running. There was no reason to try [to refrain from drug use] anymore. I stopped taking care of myself. I never cried so much in my life.”
While the brief stories presented in this post have to do with women whose mothering experiences are particularly harsh, once we understand the political, legal and economic contexts of mothering in the United States, we understand that these personal experiences are shaped by the same social forces that shape maternal health for all women.
Around the world maternal health is constrained and encouraged by both formal and informal social institutions. In the United States, mothering increasingly has become a matter of legislative policy and judicial control. The lack of universal healthcare coverage, narrowly limited coverage for pregnant women, abortion restrictions, mass incarceration, prosecution of women for prenatal harm, removal of children from mothers who use drugs, welfare (TANF) limitations on childbearing, and the authority of family courts in child custody decisions are manifestations of a broad cultural consensus that the State has legitimate powers to decide what constitutes maternal health, who is entitled to health-enhancing conditions and services, and who counts as a good enough mother.
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If you live in Massachusetts, let your legislators know that you SUPPORT HB 1382: An Act to Provide Community-based Sentencing Alternatives to for Primary Caregivers of Dependent Children Convicted of Non-violent Offenses. If you live in other states or countries, find out about — or initiate — similar legislative efforts.