Commentary Human Rights

The Fight for Reproductive Rights Too Often Excludes Disabled Parents

s.e. smith

The right to have children and keep them is especially in danger for disabled people, who may be prevented from parenting at all or risk confiscation of their children by welfare authorities after birth.

Last month, a British couple with developmental disabilities was reunited with their baby and awarded damages by a High Court in London after being separated from their child for nearly 18 months. Judge Clifford Bellamy determined that social workers in the couple’s town of Leicester had handled the case of “Baby H.” incorrectly when they removed the child from custody, placed her with a foster family, and failed to explain to her parents just why she’d been taken away in the first place. Meanwhile, it took more than a year for Leicester officials to properly and honestly assess whether Baby H.’s family was fit to parent. The sluggish action on the case was so appalling that the judge even felt compelled to comment on how the Council had “dragged its feet.”

What happened to Baby H.’s parents, though, was not an isolated case. In fact, in the United States, the American Psychological Association estimates that “the percentage of parents with intellectual disabilities who have their children taken away from them is as high as 40 percent to 80 percent.”

Mainstream conversations about reproductive rights often revolve around the right to not have children, especially in the wake of anti-choice restrictions sweeping the country. However, there’s another issue that many overlook: the right to have children, and the right to keep them once they’re born. This right is especially in danger for disabled people, who may be prevented from parenting at all or risk confiscation of their children by welfare authorities after birth. Social justice advocates must support these families too.

Historically, disabled people—along with other marginalized social groups—have been forcibly sterilized as part of a widely approved policy of eugenics across the political spectrum. Even the Supreme Court gave it the nod in 1927’s Buck v. Bell, which has never actually been overturned. While the practice is much more rare today, it does still happen. Doctors developed the controversial and horrific “Ashley Treatment,” for example, in 1997. Named for its first victim, the procedure strips children with developmental disabilities of their reproductive tracts and stunts their growth; experts estimate that medical professionals have continued to perform it on at least a dozen children worldwide. Meanwhile, in 2012, a judge had to smack down an attempt to force an adult disabled woman to undergo an abortion against her beliefs and follow with a tubal ligation to prevent future pregnancies. In the 21st century, the fact that the proposal was on the table at all was chilling.

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Disabled parents also face the terrifying prospect of having their children taken away from them after they’re born. A 2012 report from the National Council on Disability (NCD) noted that disabled people are more at risk of having their children taken under spurious and suspicious pretenses and have to fight harder to retain custody rights. It documented cases like that of a quadriplegic women who had to fight for custody for more than a year, and a California woman who was denied the opportunity to adopt because of her cerebral palsy.

And like forced sterilization, this injustice has ample historical precedent. In 1986, the State of Colorado took a child from a blind parent with the justification that the child was “underweight,” a fact two doctors reportedly disputed. And in 1988, New York City took two children of a Deaf mother into state custody, in a case that involved a tangled snarl of domestic violence, authorities’ failure to hire interpreters to assist with the ordeal, and judgmental attitudes on the part of child services personnel.

More recently, in 2010, Missouri officials separated Erika Johnson and Blake Sinnett from their newborn baby for nearly two months. The young parents were furious and heartbroken; after living independently for years, authorities informed them that they were incapable of caring for their infant because they were blind.

“Records from Children’s Protective Services … revealed nothing other than blindness as a reason for removing Mikaela from her parents and placing her in protective custody with a foster mother,” confirmed Gary Wunder in a November 2010 issue of the Braille Monitor. Wunder is president of the National Federation for the Blind, which played an important role in the case. According to the NFB, while education on parenting while blind is available for reproductive justice advocates and medical centers, many are not taking advantage of it—a critical misstep, considering that 1.3 million Americans experience blindness and low vision.

Although local media supported Johnson and Sinnett’s fight to get their baby back, there are often blatant prejudices at play from mainstream outlets, who sometimes imply that a disability somehow robs someone from their very identity as a parent. The same year that Johnson and Sinnett battled for their child, the Los Angeles Times had the gall to weigh in on the case of a woman named Abbie Dorn with the headline, “Severely disabled, is she still a mom?” Dorn had experienced multiple complications during the birth of her triplets, resulting in significant impairments. Her husband attempted to keep her babies separated from her for years under the guise of any contact being “too traumatic” for their children. It took years of court battles for her to access visitation rights alone—the courts, Dorn’s husband, and the media assumed, of course, that she was incapable of taking custody of her children.

In reality, challenging someone’s parental fitness based on an innate trait displays a degree of bigotry that reproductive rights advocates must unite against. A day in the life of Priscilla Hedlin, a blogger and mother of three, provides a clue as to just how prejudiced that misconception is. Her time-lapse video of a hectic day at home, which she posted to YouTube earlier this year, looks utterly ordinary, because it is: She’s a busy parent taking care of her children (whom she also homeschools), working on tasks around the house, and keeping up with various activities. She also happens to use a wheelchair for mobility. In other words, she, like millions of other disabled parents, is a parent first and a disabled person second—what’s important is not her disability, but her skill as a parent, which has nothing to do with her spinal cord injury.

Protecting parenting rights for disabled people starts with striking down laws restricting them currently on the books, such as those documented in the 2012 NCD report. In July 2014, the NCD also held an open congressional forum inviting legislators and members of the public to learn more about the challenges facing disabled parents, including the barriers in the way of those interested in pursuing assistive reproductive technology (ART) to have children because they cannot or don’t want to bear their own. So we also must defend access to ART and adoption for parents who choose to go that route—while also defending the right to get pregnant and carry pregnancies to term, for those who do not. The fight to protect these rights also extends to challenging family court cases in which the basis for questioning parental fitness is nothing but a parent’s disability.

This is an issue of social attitudes as well as legal barriers: Disgustingly, the 2012 NCD report documents a number of cases in which disabled mothers have been told they shouldn’t pass on their genes, are unfit to have children because they’re disabled, or are questioned about their families when they’re out in public as though they couldn’t possibly be parents. This is neither fair nor just to disabled parents, who work hard to bring their children the best opportunities in the world, even if their techniques may seem unfamiliar or unorthodox to nondisabled people. A wheelchair user can change a diaper just fine; a blind woman can hear her baby cry in the night for food; a Deaf mother can see a light-up baby monitor.

Everyone who wants to enter into the challenging, amazing, and beautiful endeavor of parenting deserves an equal shot. Including disabled people.

Commentary Human Rights

A Sterilized Peruvian Woman Seeks Justice From the Americas’ Highest Human Rights Court

Cynthia Soohoo & Suzannah Phillips

I.V.'s case, I.V. v. Bolivia, illustrates the all-too-common scenario of medical providers making decisions on behalf of women who are deemed unfit or unable to make their own choices.

In 2000, a Peruvian political refugee referred to by her initials, “I.V.,” went to a Bolivian public hospital to deliver her third child. According to court documents, the doctors decided during the cesarean section that a future pregnancy would be dangerous for I.V. and performed a tubal ligation—for which they claimed they had I.V.’s consent. When I.V. learned that she had been sterilized two days later, she said, she was devastated.

After her complaint against the surgeon who sterilized her was dismissed by Bolivian courts, I.V. brought her case to the Inter-American Court of Human Rights (IA Court), which heard oral arguments earlier this month. In a region where there are widespread reports of forced sterilization, the case is the first time the court will consider whether nonconsensual sterilization is a human rights violation.

The IA Court should hand down its decision in the coming months. A favorable ruling in this case by the IA Court—the highest human rights court in the Americas—could require Bolivia to, among other things, pay reparations to I.V., investigate and possibly punish the doctors who sterilized her, and take steps to prevent similar situations from occurring in the future. The decision will also have ramifications across the region, establishing a binding legal precedent for the 25 countries that are party to the American Convention on Human Rights.

I.V. v. Bolivia provides an important opportunity for the IA Court to condemn forced sterilization and to adopt clear standards concerning informed consent. It would also be joining U.N. human rights bodies and the European Court of Human Rights in recognizing that forced sterilization violates fundamental human rights to personal integrity and autonomy, to be free from gender discrimination and violence, to privacy and family life, and, as CUNY Law School’s Human Rights and Gender Justice Clinic and Women Enabled International recently argued in our amicus brief to the IA Court, to be free from cruel, inhuman, or degrading treatment or torture.

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Further, the European Court and U.N. experts recognize that possible health risk from a future pregnancy cannot justify nonconsensual sterilization because there are alternative contraceptive methods to prevent pregnancy and women must be given the time and information needed to make an informed choice about sterilization. The IA Court should make similar findings.

Unlike the sterilization of Mexican immigrant women in the United States in the 1970s, recently portrayed in the documentary No Más Bebés, I.V.’s case doesn’t appear to involve a broad governmental policy of sterilizing poor or immigrant women. But it illustrates the all-too-common scenario of medical providers making decisions on behalf of women who are deemed unfit or unable to make their own choices.

Indeed, forced and coerced sterilization is disproportionately perpetrated around the world against women in stigmatized groups, such as women living with HIV, poor women, ethnic or national minorities, or women with disabilities because some health-care providers believe that such women should not have children. Whether driven by animosity against certain women, stereotypes that these women are unfit to become parents, or a paternalistic notion that “doctor knows best,” the end result is the same: Women are permanently robbed of their capacity to have children without their consent.

The parties contest whether I.V. orally consented to sterilization during her c-section. But even if she did so, medical ethical standards and decisions from U.N. human rights bodies and the European Court make clear that consent obtained during labor or immediately preceding or after delivery cannot be valid because the circumstances surrounding delivery—due to pain, anesthesia, or other factors—are inherently inconsistent with voluntary patient choice.

I.V. delivered at a public hospital that predominantly treats indigent women, many of whom are indigenous or migrants. The Inter-American Commission on Human Rights—which effectively acts as a court of first instance for the IA Court—considered the case before it went to the IA Court and noted the special vulnerability of migrant women seeking health care in Bolivia, given their reliance on public services and the lack of care options. It found that I.V.’s medical team was influenced by “gender stereotypes on the inability of women to make autonomous” reproductive decisions. It further concluded that the decision to sterilize I.V. without proper consent reflected notions that the medical staff was “empowered to take better medical decisions than the woman concerned regarding control over reproduction.”

Sixteen years after her sterilization, I.V. still acutely feels the emotional and psychological toll of having been sterilized. Because of the severity of physical and mental harms that forced sterilization imposes upon women, the Inter-American Court should join the European Court of Human Rights and U.N. human rights experts in recognizing that forced sterilization constitutes cruel, inhuman, or degrading treatment and may constitute torture.

In addition to condemning forced sterilization, the IA Court should recognize the multiple human rights violations I.V. suffered. The Inter-American human rights system protects women from gender-based discrimination and violence and violations of the right to personal integrity, information, privacy, and family life, all of which are at issue in this case.

Analysis Family

Massachusetts Seeks Incarceration Alternatives for Parents

Britni de la Cretaz

A bill under consideration could help keep families together when a parent is the primary caregiver and is convicted of a nonviolent crime.

Jasmine (a pseudonym) is a 15-year-old from Boston. When she was 7 years old, her father was incarcerated.

“It wasn’t for any violent crimes, but they gave him four years,” Jasmine told Rewire. It was a separation that affected her deeply, she said: “I didn’t get to see him a lot because he was sent so far out of Massachusetts, and I could only talk to him over the phone.”

Jasmine feels strongly that jail weakened her relationship with her father. “He missed four birthdays that I’ll never get back,” she said. “And when he came back home, we were both totally different people. We didn’t know each other anymore.”

But Massachusetts has a unique opportunity to change the lives of kids like Jasmine—and their parents. The state’s Joint Judiciary Committee is currently considering a bill that seeks to provide “community-based sentencing alternatives for primary caretakers of dependent children who have been convicted of non-violent crimes.” HB 1382 would allow these caregivers to remain in their communities and with their children. Legislators must take action on the bill, which is sponsored by Rep. Russell Holmes (D-Boston), before May 2, or it will die in committee without a chance of becoming law.

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According to Andrea James, the founder of Families for Justice as Healing and the author of the bill, the seeds for HB 1382 were planted during conversations with other women she met while incarcerated in a federal prison in Danbury, Connecticut.

“We looked at what was happening to our families,” James told Rewire.

And it’s not just the women James met in prison. U.S. Department of Justice data shows that the number of children with a mother in prison has more than doubled since 1991, and most of these mothers were living with and caring for their children at the time of their conviction. Pew Charitable Trusts puts the number of mothers behind bars at more than 120,000 nationally, and the number of fathers at more than 1.1 million.

When primary caregivers of young children are sent to jail or prison, families are torn apart, and the trauma can affect family members for generations. As indicated in the 2015 Ella Baker Center report Who Pays? The True Cost of Incarceration on Families, 39 percent of formerly incarcerated parents had lost custody of their children or had their parental rights terminated while they were incarcerated.

The report also found that a parent’s incarceration can negatively affect a child’s health, economic stability, and mental well-being. This trauma is not inflicted equally across racial groups—according to research done by the Pew Charitable Trusts, one in nine Black children have had a parent in prison or jail.

Ayana, who asked that her last name not be used, is a 21-year-old from Cambridge, Massachusetts. She told Rewire, “My father was incarcerated and that put a lot of stress on my mother, who had to care for us and take his place. You have no idea where they’ve gone and why, especially as a young child.”

The Who Pays? report found that those family members deal with economic hardship as a result of the incarceration, and many show signs of post-traumatic stress disorder, depression, and anxiety.

The negative impact of incarceration on families was something that James heard over and over again from the other women with whom she was incarcerated. And so the women talked about alternatives that might improve their own lives and those of their children.

Our bill really just was a way to say, ‘Look, we don’t need to be in a prison. We don’t need to be separated from our children,’” James said. “The things we’d been convicted of are not things that are going to be healed or made better if we just continue to put people in a prison.”

According to the Massachusetts Department of Corrections (DOC), 53 percent of women in Massachusetts correctional facilities were convicted of nonviolent offenses—22 percent of incarcerated women were convicted of property crimes and 19 percent were convicted of drug offenses. The majority of these women are Black women.

In the process of brainstorming what such a bill could look like, James spoke with advocates and legislators in California who had recently passed a bill in support of their state’s Alternative Custody Program. That program allows eligible incarcerated people to finish their sentences outside of prison in order to care for their families. James said it was a good model for what might be possible in Massachusetts.

California is not the first state with lawmakers who have begun implementing policies to lessen the toll that incarceration takes on families. In 2010, Washington state passed legislation that allows for either a community custody sentence (where offenders are supervised and must participate in treatment and programming) or partial confinement (in which offenders can be transferred to the community on ankle monitoring) for eligible nonviolent offenders with minor children.

Following suit, Oregon proposed (and passed) its own bill in 2015, which would allow a judge to sentence someone to 24 months of probation instead of incarcerating them, as well as the ability to reduce sentences by six months for parents who are already incarcerated. In order to be eligible, parents must prove that they had legal custody of their children at the time of their incarceration, and had to have been convicted of a nonviolent offense.

If the Massachusetts bill becomes law, judges may consider community alternatives if the defendant is a primary caretaker of minor child. Alternatives could include drug treatment programs, parenting classes, mental health services, or even housing assistance, and could be tailored to the unique situation of the person being sentenced.

Ayana was one of the many people who testified in front of the judiciary committee at a hearing for the bill in October. Ayana explained to Rewire that “people who wouldn’t be in favor of this act, they’re perpetuating violence on poor communities in [Massachusetts], and this violence is racialized.”

At October’s hearing, no one in the packed room offered testimony against HB 1382.

Lois Ahrens, founder and director of the Northampton-based Real Cost of Prisons Project, said, “This bill is an important step because putting women—and especially women with children—in prison is expensive. It’s harmful, and it’s incredibly costly, in terms of people’s lives. It’s also costly and unproductive in terms of outcomes for someone who gets incarcerated as opposed to what happens to someone who goes in front of a judge who allows them to stay in their community and be involved in community services, someone who doesn’t detach from their community or kids.”

The costs that Ahrens refers to are staggering. For the fiscal year 2014, the average cost per year to house an inmate in the Massachusetts DOC was $53,040. That comes to more than $4,000 per month. “Four thousand dollars per month could buy a lot of services,” said Ahrens. “It could be housing, health services, mental health counseling, drug treatment,” or an assortment of other services.

This advocacy becomes even more urgent for supporters of HB 1382 because, as their bill sits in the judiciary committee awaiting a vote, a proposal to establish a new women’s correctional facility in the state has been voted affirmatively out of the senate’s Public Safety Committee.

In a statement to Rewire, the office of the bill’s sponsor, Sen. Karen Spilka (D-Ashland), said that SB 1297 was filed “in response to the real problem of overcrowding in detention facilities in the state …. Senator Spilka will also be using this bill to create a conversation among her colleagues in the Legislature about much-needed reforms and updates to the prison system.”

“Senator Spilka would like to find ways to decrease the incarceration rate for women in Massachusetts, not increase it, and also to ensure that women who do face prison time receive the best treatment possible,” the statement continued.

But advocates argue that filing a bill for a new facility is a misguided way to achieve these goals. They fear it ensures more people will end up behind bars—not fewer.

A 2015 study by the Massachusetts Women’s Justice Network found that the number of incarcerated women who are pretrial or awaiting sentencing continues to increase. What this means is that they are incarcerated because they cannot afford bail, and sometimes that amount is as low as a few hundred dollars. This is not only leading to an overcrowding of jails, but is having a real impact on the children of those women, Black mothers in particular.

Advocates in Massachusetts already have solutions to this issue in place, just waiting to be passed: this primary caregivers bill; HB 1584, which would allow authorities to place people in community corrections programs during the pretrial process; and SB 802, a bail-reform measure.

“If Senator Spilka is saying she cares about women and doesn’t want to send them to an overcrowded jail, what we’re saying is, ‘Good, don’t send them. Have alternatives for primary caregivers, have bail reform,’” said Ahrens. “For now, let’s put a moratorium on new jails until we do these other things, and if we still need a new women’s jail after all that, then we can talk.”

Advocates believe that by proposing alternatives to incarceration for primary caregivers, Massachusetts could set an example for the rest of the country about what criminal justice reform could look like. Advocates “spend all of our time trying to stop bad things from happening, like stopping a new jail,” explained Ahrens. “It’s rare that we get to advocate for something that is positive and will have a positive outcome for people.”

But Ahrens feels strongly that if this bill does pass, it could have a huge influence on criminal justice reform, not just in Massachusetts, but nationwide. Finding alternatives to help “primary caregivers says to people that there is an alternative out there,” she said. “The default could be community-run, community-based services. It doesn’t have to be sending a woman somewhere, behind walls, divorced from everything she knows and loves.”