Parenting with a spinal cord injury is as much about the right to have kids and raise them as it is about the physiological ability to parent them.
It’s natural for many of us to observe older family members and friends raising their children and give at least some thought to raising our own. For individuals with disabilities, however, the ability and appropriateness of being a parent has long been questioned, despite limited data on the subject. Much of the available research lumps all parents with disabilities together rather than identifying functions of individual disabilities and their influences on parenting. Some others evaluate children raised by parents with spinal cord injury (SCI) rather than the parenting process itself. Studies on specific effects unique to one disability related to the parenting task itself don’t exist or are hard to find.
The history of the public’s perspective toward parenting with a disability is at best troubling, if not altogether disturbing. Efforts to prevent people with disabilities from having kids via neutering have occurred — even in the last 50 years. In January 2012, a North Carolina task force acknowledged involuntary sterilization nationally, including 7,600 people in that state between 1929 and 1974. Many of those sterilized were chosen because they had disabilities. Even today, social stigma results in bias against the appropriateness of individuals with disabilities having kids.
Parents with disabilities also face parenting obstacles beyond the process of bringing children into the world. The National Council on Disability reports legal discrimination against parents with disabilities and claims that parents with disabilities are more likely to lose custody of their children than those without disabilities. As one author put it, “there’s a cultural belief that parents with intellectual and physical disabilities don’t — or shouldn’t — raise kids.” This bias is demonstrated by the high percentage of state child welfare laws that list some type of disability as grounds for removing a child from his home and allowing parental rights to be terminated.
One Swedish study of 26 women with a spinal cord inju who gave birth to children between 1981 and 1990 reports that SCI does not prevent women from being good mothers. The study, however, is based on interviews with the mothers, spouses and children over age 10 regarding family interactions, rather than specific effects of SCI on parenting acts. A larger study in the U.S. used a national survey of parents with disabilities to inquire about disability-related limitations to parenting but did not evaluate different types of disabilities. The research cites challenges like physical exertion, doing everything that needs to be done, social messages to children, transportation, discipline, continuity, limited income and communication — but does not link effects of each specific disability to those problems.
The few resources that do exist to encourage parents with disabilities often rely on a medical model of disability, which insinuates parental inability. Rather than a person-centered focus with consideration of disability, parents are directed to doctors, OTs, and other professionals, as if they know best how those parents should raise their own kids. Adjustment to parenting is a task for anyone, and parents with disabilities may in fact have an advantage thanks to the skills they learned adapting to their disabilities.
Looking over the existing research, it is hard not to be struck by how incomplete and uninformative it is. Parents with disabilities shouldn’t be simply lumped into one group, and each parent, perhaps despite disability, possesses his or her individual strengths and weaknesses. A current study at the University of Wisconsin-Madison aims to help correct that by identifying specific effects that the presence and symptoms of SCI have on the ability to parent.
The study will utilize the World Health Organization’s International Classification of Functioning to identify specific symptoms of SCI and analyze parenting tasks within the scope of SCI-related abilities. The results hope to reveal how SCI-specific variables may or may not influence the parenting role.
The UW-M study also intends to provide an analysis of a large number of post-SCI parents, rather than an overview of a small number of families. The focus will be on the parents with SCI themselves rather than the development of children or the effect on family. Researchers hope to provide an updated, culturally-specific and disability-specific view of raising children within the U.S. after onset of parental SCI.