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The Insulting Childbirth Experiences Mothers With Disabilities Endure
Shortly after Nikki Villavicencio gave birth via C-section, there was a complication. Her daughter, Alexandria, was coughing up blood, and Alley's stomach was swelling. Nikki's doctors wanted to transfer Alley to the children's hospital across town. Already afraid for their baby, Nikki and her partner, Darrell Paulsen, panicked. Both parents have significant physical disabilities: Nikki, then 27, has arthrogryposis, a condition that immobilizes some of her joints. She uses her feet for almost all functions people typically perform with their hands, from texting to handling utensils to applying makeup. Darrell, then 42, has cerebral palsy, which affects muscle tone and movement. Because they both use wheelchairs, they couldn't ride with Alley in the ambulance.
"At this point, we didn't know what the heck was going on with Alley — if she was dying or what," says Nikki. Darrell's brother shuttled Nikki and Darrell to the children's hospital one at a time — and when they arrived, they said they encountered a very different reception than the warm support at the hospital where Nikki delivered. The staff at the children's hospital complained that their wheelchairs took up too much space in the exam room, and a social worker told them the staff were only there to care for Alley, not her parents. The nurses also made it clear they would not help Nikki breastfeed. (Nikki remembers thinking,We didn't want you to, but OK.) They even suggested Darrell wait in a separate room, down the hall.
"We said, 'No, he's her parent,'" Nikki says, "'he has every right to be here.'" (The hospital did not return request for comment.)
Although doctors would ultimately find that Alley was completely fine, the experience was a reminder of a reality that many mothers with disabilities face. "As a person with a disability and as a woman, I always felt the world didn't see me as a caretaker," Nikki says, but rather, "someone who needs to be taken care of."
Nikki and Darrell, both longtime activists, met in 2009 at a rally for the Minnesota Consortium for Citizens With Disabilities. Nikki was all bundled up in the March cold except for her exposed feet, which she was using to pass out brochures. Darrell pestered someone to give him their gloves, which he persuaded Nikki to wear over her feet, and then asked for her phone number. He called every day for a month and later repeatedly sent flowers until she agreed to go out.
By 2011, they were committed to each other but never thought having kids was possible. "My parents were told when I was born that I would never have a child," Nikki says. Growing up, when her cousins would play house, Nikki would hang off to the side, sure that being a mommy wasn't in her future. When she moved to Minnesota from Wisconsin at 22 and went to a gynecologist to request a pap smear and contraception, she recalls the physician asking her, "Is it even possible for you to have intercourse?" (Most people with disabilities can, as trained doctors should already know.)
But outside church one morning, Nikki suddenly felt she had to throw up. Darrell was worried; Nikki didn't get sick much. When a pregnancy test, taken with the help of a personal care assistant (a home health aide who helps clients tackle a range of daily activities, from getting dressed to going shopping) came up positive, Nikki and Darrell couldn't stop laugh-crying. What they'd been conditioned to assume was impossible had become possible. But they immediately worried about how they'd be treated in the medical system.
The idea that women with disabilities shouldn't reproduce starts early. Many young women with cerebral palsy reported, in a multi-year study by the Cerebral Palsy Foundation, that they didn't even get basic sex ed in school because it was taught in classes they didn't participate in, like physical education.
Anastasia Somoza, a 32-year-old New Yorker who spoke at the 2019 Democratic National Convention, has cerebral palsy and started taking birth control as a teenager to help control her menstrual cycle, but her doctors still never asked if she was sexually active. In fact, a 2005 study in theJournal of Pediatric and Adolescent Gynecologyfound that 40 to 50 percent of gynecologists admitted they felt somewhat to completely unprepared to treat adolescents with disabilities. "I think most physicians assume, when dealing with women with disabilities, that we are asexual unless we say otherwise," says Somoza. Only one gynecologist has ever asked whether she wants to have children, she says.
Doctors often dismiss women with disabilities' desires to get pregnant, and many women with disabilities who do conceive are pressured to have abortions, according to disability rights advocates. "We've had women tell us that doctors have said, 'Don't you have enough problems? Why do you want to get pregnant?'" says Claire Kalpakjian, a rehabilitation psychologist studying women with disabilities' experiences with ob-gyn care. Kieran Kern, a 40-year-old mother from New Jersey with cerebral palsy, recalls that when she was pregnant in 2012, a hospital staffer asked, "How are you going to care for a baby?" The question, she says, is insulting; women with physical disabilities find creative ways to parent just like able-bodied mothers. "I'm a grown woman. I have a job and two hands — although I know people who change diapers with their teeth," Kern says.
But the problem goes far beyond judgmental doctors and strangers. More than 6 percent of parents in the U.S. have a disability, but two-thirds of dependency statutes allow courts to decide whether a parent is unfit solely because of a disability. "Even today, 22 years after the passage of the Americans with Disabilities Act, parents with disabilities are the only distinct community of Americans who must struggle to retain custody of their children," reads a 2012 report issued by the National Council on Disability to Congress. A 2000–2009 study at the University of Minnesota's Center for Advanced Studies in Child Welfare found that parents whose school records indicated a disability were more than twice as likely to be involved with Child Protective Services (CPS) than the general population and more than three times more likely to lose their parental rights. And on a Facebook group of more than 300 mothers with disabilities, of which Kern is a member, almost every mother who's received assistance from the state — like Medicaid or food assistance — says they've had CPS called to the hospital when they gave birth.
Doctors have good reason to show concern when their patients with disabilities want to have children. There aren't many studies on the population, but women with disabilities face a chance that they could lose mobility, or their disability could be exacerbated, or, in some cases, that their pregnancy could be life-threatening. On a basic level, pregnancy with a disability means heightened versions of the same issues all expectant mothers face: a changed center of gravity, more weight, often less energy. Women who use walkers or canes might end up in wheelchairs.
Nikki already had hypoglycemia (low blood sugar), so it wasn't a huge surprise when she developed gestational diabetes. She started taking insulin shots four times a day, a challenge for an able-bodied expectant mother that was much harder for someone without use of her hands and whose partner had limited mobility as well. By state law, personal care assistants (PCAs) are not allowed to administer shots. People with disabilities who receive home health care need to apply for support from nurses to deal with any injections or medication.
But when Nikki and Darrell requested that additional help, they say they were told, "You won't get more services for this, because you chose to be pregnant." (Darrell instead administered some of the shots, with substantial difficulty, and his mother or PCAs who went briefly off the clock to perform the service "as a friend" administered others. When asked about this denial of services, the county agency stated it was "unable to comment because of protected private client medical data state and federal laws.") Most PCA agencies also forbid their staff from performing any tasks related to parenting, like putting babies' clothing in with laundry they might already be washing. PCAs are hired with government funds, and current law in most states only allows them to provide services that directly help the patient.
Many women with disabilities are willing to take on these challenges to have a family. As Kalpakjian recalled of one woman in her study, "She said, 'I want to leave a part of me behind in this world.' She just wanted what anyone else wanted."
Nikki's pregnancy and childbirth went relatively smoothly; her disability wasn't worsened, and Alley showed no signs of disability herself. Their ob-gyn had prepared the staff at the hospital where she delivered ahead of time, and they found a visit from a social worker who told them about support for high-risk parents to be helpful. But Nikki and Darrell's separation from their sick infant at the children's hospital scared them. They'd read stories. They knew that their initial positive experience was not the norm.
A 1987 case, that of Tiffany Callo, a mother with cerebral palsy who uses a wheelchair, made this clear when Callo had both of her children removed to foster care by a CPS system that insisted her slow process of changing diapers was proof of her inability to parent; after a long fight that wore her down, both children were adopted by other parents, leaving Callo at the time with only a single annual supervised visit. More recently, in 2010, two parents who were blind had their 2-day-old daughter removed to foster care for two months because a CPS social worker said the mother's initial awkward attempt to breastfeed indicated the family would require 24-hour care.
These days, "the bias has gone underground," says Megan Kirshbaum, the founder of Through the Looking Glass, the primary organization in the U.S. advocating for rights for parents with disabilities, "but it doesn't mean it isn't there." For example, even unwarranted CPS calls are a black mark on parents' records and can be used as grounds to separate them from their children if custody is ever challenged.
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