“When Parents Kill Disabled Children, We Must Hold Society Responsible”

“All too often, society grieves over the existence of people with disabilities, mourning our lives instead of our deaths”-Zoe Gross

When cases of parents killing or abusing disabled children 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,” dehumanising the victims or seeming to forget them altogether.

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 non disabled 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 Enters 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 theatre 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 paralysed 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.

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 specialised 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 re-evaluation 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 organisations 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.