Every once in awhile a venue surprises you: Teen Vogue has been doing good critical reporting on social justice issues and American politics, and Cosmopolitan–long the home of beauty tips and how to please your man–has just published an article called “The Insulting Childbirth Experiences Mothers with Disabilities Endure.”
Author Kathryn Joyce interviewed a number of women with disabilities who are also mothers, but the focus of her article is the story of Nikki Villavicencio and her partner, Darrell Paulsen. Nikki uses her feet to perform tasks instead of her arms, since her arm joints are immobilized by arthrogryposis; Darrell has cerebral palsy. Both often use wheelchairs as mobility assistance. After childbirth, their newborn infant Alexandria was transferred to a children’s hospital across town due to worrisome symptoms:
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.”
The article goes on to further explore the kinds of rhetoric and disrespect to which disabled mothers are too often subjected, from pre-conception recommendations that they never become pregnant or get an abortion if they do become pregnant, to uninformed doubts about their ability to care for their children. As Kieran Kern, a mother with cerebral palsy, says in the article, women with physical disabilities find creative ways to parent just like able-bodied mothers.
The article also addresses U.S. court dependency statutes, 2/3 of which allow courts to decide whether a parent is unfit solely because of a disability. Potential loss of custody is a very real and everpresent threat. This means that Child Protective Services often becomes involved in the lives of families with a disabled parent.
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.
As a result of such situations, Nikki and Darrell have proposed legislation in their home state of Minnesota. The Parenting With Disabilities bill, the first of its kind in the states, “would try to prevent CPS calls on parents with disabilities by helping parents apply for adaptive parenting equipment and allowing personal care assistants to assist with minor parenting tasks.”
This rich, long-form consideration of this topic in a mainstream magazine aimed at women is thing of great value not just for regular readers but also for medical ethicists looking to expand their knowledge base of issues facing reproducing women and persons with disabilities. The intersection of the two, at least in American society, is no easy place to be.
Unfortunately in Canada women with physical disabilities continue to encounter barriers to perinatal care and people who question their fitness for motherhood. Some women in my dissertation study for example reported having to see a social worker before leaving the hospital with their newborns and we’re asked questions that non-disabled women probably don’t get asked. Here is the link to my recently published paper on barriers to perinatal care http://www.disabilityandhealthjnl.com/article/S1936-6574(17)30067-5/abstract