The case of a Pennsylvania mother who left her quadriplegic son to die in the woods with only a blanket and a copy of the Bible for comfort last month made riveting national news. But the attention paid to the situation, and the vitriol it prompted, was actually unusual: Many cases of parents killing or attempting to murder disabled children pass without much of a ripple. When the cases do hit the media, it’s common to see these parents treated sympathetically. Reports typically discuss how they were “pushed to the breaking point” or “under too much stress,” dehumanizing the victims or seeming to forget them altogether.
Narratives like these portray disabled children as burdens and abusive parents as overloaded and stressed. Disabled children become secondary in this rhetoric, which positions disability as the problem rather than the society around these children and their families—a society that leaves families with little support systems.
Disabilities, whether physical, developmental, or psychiatric, can take many forms that require different levels of support or care. And Nyia Parler is far from the only mother in recent years who’s abused her disabled child, although she is one of the few whose actions garnered much of a lasting reaction. One of the most high-profile cases of a parent killing a disabled child occurred on October 24, 1993, when Robert Latimer put his disabled daughter Tracy in the cab of his pickup and poisoned her with carbon monoxide. The case went back and forth in Canadian courts for years; it remains a flashpoint for discussions about “mercy killings” and whether Latimer was justified in killing his daughter due to how overwhelming it was to care for her. Ultimately, Latimer was sentenced to one year in prison and one year on probation on the grounds that his ten-year mandatory sentence was “cruel and unusual punishment”—only to have a court later reverse the decision, though he didn’t start serving jail time until 2001.
In 2013, a reprise of that rhetoric came up on CBS news, which justified the murder of Alex Sourdalakis by suggesting that he was difficult to care for, as are other autistic children. His killers are currently awaiting trial. Last year, London McCabe was killed by his mother, and many media outlets reported the death as tragic, but understandable, given the stress he posed to his family. After an indictment to bring her up on charges, she pled not guilty.
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Also in 2014, 13-year-old Isaac Robitille died at the hands of his mother and her boyfriend when they injected alcohol into his intravenous tube. The case attracted brief attention, but one thing it didn’t attract was a murder trial. The judge determined that his mother had been “under trying circumstances,” and there wasn’t adequate evidence to indicate she’d meant to kill her son. That same year, Tania Clarence suffocated her three disabled daughters to death before attempting, and failing, to commit suicide. When the case hit the media, many were appalled by the crime, but understanding—so much so that a court ruled she’d clearly been “overwhelmed by care,” and the Daily Mail suggested that she’d been driven over the edge by “meddlers” interfering with her parenting.
Even when the public and the media do condemn abusive parents, such as they did with Nyia Parler, these responses are often bound up in classist or racist stereotypes instead of critiquing the broader picture; the fact that Parler is Black is not a coincidence. And by contrast, when parents kill nondisabled children, the public points the finger at them as abhorrent murderers taking innocent lives. Ironically, social services also find themselves under the gun when nondisabled children suffer abuse, as when Fiona Anderson drowned her three children in 2013 and the media asked where government supports were when she was clearly in distress. But when disabled children are the victims, the public often bemoans their parents’ situation and refuses to question the lack of a social safety net.
Obviously, the abuse or death of any child is a tragedy. And parenting is challenging, period—families have to sink substantial resources into bringing up healthy, happy, well-balanced children. In purely financial terms, it costs nearly $250,000 to raise a child. With disabled children, parenting can become even more complicated; children may need additional medical treatment, accommodations, and other supports that nondisabled children don’t require. When society, the media, and families of disabled children position these challenges as originating in disability alone—and suggest that they’re enough to drive parents to murder—it’s problematic, given that many of them could be addressed with social supports. Tellingly, though, society is unwilling to provide these supports.
One of the most significant challenges facing parents of disabled children is the expectation that they remain primary, uncompensated caregivers for their children, with limited access to respite care that would allow caregivers to take time off. The Centers for Disease Control and Prevention (CDC) estimate that unpaid caregivers like family members and domestic partners handle 90 percent of long-term care in the United States. Government agencies are reluctant to provide funding to family caregivers, and when they do, it’s often not enough. For middle-class and wealthy parents, providing supportive care to their children through hired aides, nurses, and personal care attendants may be entirely manageable, but low-income and working class parents can be financially devastated. If one parent is forced to stay home or families attempt to distribute care among relatives and friends, it can create a stressful and untenable situation for everyone involved.
Likewise, parents of disabled children often face limited accommodations in a society that doesn’t respect the rights of disabled people. It can be challenging to complete even simple tasks, such as taking a disabled child to school, or finding a house that will accommodate a wheelchair. Improving quality of life with things like going to the beach or watching a movie in the theater is even harder. These issues are evidence of lack of structural supports, not of problems caused by a child’s disability, yet the public treats them as hardships—for parents, of course, not for their children.
Frustrated with limited resources, some parents of disabled children feel forced to put their children in care because they can’t support them safely at home. This typically means putting children in nursing homes, skilled nursing facilities, or large institutions—not small group homes that root disabled people in their own communities. Such placements occur despite decades of disability activism advocating for community-based living, including legal pressure to establish clear guidelines encouraging government agencies to fund that kind of care. In the long term, providing support services to people where they are is actually less costly, but it can still be expensive when someone needs 24/7 assistance with basic tasks of daily living, as was the case with Joshua Smith, a young man with cerebral palsy who recently died in a fire because his aide failed to show up for a shift. When the government doesn’t provide financial support to needy families, tragedies like Smith’s death are almost inevitable.
This isn’t a case of disability overloading a family, though it may be framed as such. Rather, it’s evidence of a lack of social supports overwhelming a family that can’t provide the care their children need. In recent years, slashes to welfare funding and social services have made this problem even more acute, as families once eligible for funding are faced with cuts or withdrawals of support. The government puts families in the position of being unable to care for their children, creating the illusion that disabled children are burdens, and it establishes a troubling social precedent.
Make no mistake: Providing care can be very costly, and families are sometimes forced to resort to uncomfortable tactics to get financial assistance. The family of a British boy paralyzed after a misdiagnosis at a hospital, for example, recently won a very large financial settlement to assist with expenses for his care. While in this case the hospital was clearly liable, his parents were effectively forced to present their child as a burden to the court in order to receive the funds they need, regardless as to how they feel about their son. Likewise, wrongful birth suits demanding compensation for fetal misdiagnoses also have a legal precedent. While these parents may not necessarily believe their children shouldn’t have been born, they are faced with the sudden expense of raising a disabled child with no opportunity to prepare or seek community support.
While the notion that parenting takes a village may seem widespread, parents of disabled children are often left outside the metaphorical city limits, along with their children. Social supports designed to help nondisabled children—like subsidies for health care and free public education—fall short for disabled children, who tend to have higher health-care expenses and more demanding education needs, despite mandates in the Americans with Disabilities Act for equal access without discrimination. Examining who is left out of federal funding and conversations about supporting children and families is a critical aspect of reproductive justice activism and policy reform, as it’s critical to identify the communities most in need of assistance.
In the case of disabled children, many are struggling not just with poor social supports because of their disabilities, but with intersectional challenges. Low-income children are more likely to be disabled, due to factors like in-utero and childhood exposure to pollutants, and thanks to the connection between income and race, children of color are also more likely to be disabled. The lack of support for disabled children unfairly falls upon these communities, creating a very real risk of intergenerational poverty.
It’s critical to change the picture for disabled children and their families by refusing to give credit to the narrative that disabled children are burdens families must overcome or learn to cope with, including when that narrative arises as a response to tragedies. Rather, the question shouldn’t be one of how disability strains families, but of how lack of social supports strains families—testing their ability to care for their children, carve out critical self-care time, and manage the needs of all family members, not just children who require specialized care.
The social and media narrative of disability-as-disaster is a common one, and pushing back against it requires rethinking how we view and talk about disability culture; in many cases, it requires thinking about disability culture in the first place. For millions of disabled children and adults in need of activists to work in solidarity with them, this reevaluation is critical, particularly when looking at how these concerns intersect with childcare, building families, and parental relationships.
Advocates need to focus on valuing the lives of all disabled people, including children, and on pressuring media organizations to do better on disability reporting and change the narrative. Without these cultural shifts, children will continue to die at the hands of parents and family, and their deaths will be excused by outlets too lazy to interrogate why this is happening. If disabled children are framed as burdens by the media and society, it makes successful prosecutions for murder nearly impossible, a reminder that the lives of disabled children are considered lesser than those of other human beings.