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Wrongful Birth: Not Just the Stuff of Jody Picoult Novels

Catching up on the news this morning, I came across this decision from the Illinois Supreme Court in a wrongful birth suit. Wrongful birth suits (recently famously fictionally featured in Handle With Care) occur when parents sue hospitals and care providers because their children are disabled and either the facility failed to anticipate the disability and provide parents with resources, or made mistakes during delivery that led to the disability.

Two wheelchair-using protesters, one of whom appears to have a personal assistant, at a protest in Britain. Photo by Martin Argles for The Guardian.

Demonstrators showed up in large numbers for the Hardest Hit march to protest devastating slashes to disability services in the United Kingdom. Many of them had never participated in a political demonstration before.

You might expect that I’d be appalled by such a thing, but the facts of the matter are actually a lot more complicated. On the surface, it sounds completely horrible to say that the birth of a disabled child is ‘wrongful’ and that parents should be able to sue for compensation. But. Here’s the thing. Raising a disabled child is extremely expensive because of the lack of social support, especially when you haven’t had a chance to prepare for it. Jemima Aslana, writing about a different case, points out:

I know we don’t want to be seen as burdens. And to view us as such is incredibly dehumanising. But let’s face it: I’m lucky I live in Denmark, ‘cause that makes me far better off than most Americans. In the US, whether or not the parents understand, love and support their child, having a disability can be bloody costly, and a financial burden of that size is not something everyone can bear, be they able-bodied or not.

Disability is not a burden, but being disabled is expensive, and accessing care is expensive in a society where there is limited social support for disability. Parents of disabled children can qualify for some social services, but they are often inadequate. In many states, savage cuts to social services are going through right now, and these include cuts for programs designed to provide care to disabled children. Nicola Clark, writing in the UK about the decision to place her child in care, says:

We are battling to get the Children with Disabilities team to listen, to give us more than platitudes. We have asked for help and were given emergency respite but the service, accessed by Emily for the last seven years, is now apparently no longer an option. There are now no emergency respite beds at respite units in Shropshire. If we need it again, they will send her to a foster family.

This is a situation that recurs on a daily basis all over the world. Many government benefits programmes come with the assumption that if family members are around, they are available to provide full time, around the clock care. This is an utterly unreasonable assumption. Every parent needs respite periodically, because caring for another human being is work. Loved ones are work. Caregivers who are forced to be on call with no support can burn out very quickly and that can become dangerous for them and their charges.

Here in the United States, Olmstead is supposed to protect people with disabilities from forced institutionalisation, with a mandate that community-based care be the preferred approach for people with disabilities. For many parents of disabled children, this is not an option, because they aren’t offered respite care and relief caregivers, so they are forced to institutionalise their children, unless they have enough money to pay for caregivers and to cover the associated costs of disability, like medications that can cost thousands of dollars per month. Many families face the unenviable choice of being full time caregivers indefinitely, or surrendering children to foster care, because there is no middle ground. We are still suing, and protesting, for the right to live in our communities, and wrongful birth suits are an example of one way families can make it possible for their children stay at home, since they don’t get the support they need.

What I see in wrongful birth suits is the need for a larger discussion on social support for people with disabilities. Parents facing unexpected medical costs need to get them covered somehow, and, well, a lawsuit can be one way to do it, especially since support for people with disabilities drops off radically after age 21, which means that even if a child qualifies for benefits, as soon as she turns 21, those may dry up. She still needs support, but it’s not available.

There are clear intersections between disability and class here, as low-income families often cannot afford to support a child with disabilities. And this plays a direct role in abortion for disability, which I’ve often described as ableist, not because I think that people who do this are necessarily ableist, but because it’s a consequence of social ableism. Parents facing a prenatal diagnosis of disability are not monsters, and their decisions do not occur in a vacuum. The decision is not just about the disability, fear or hatred of disability, but also about worries about being able to care for the child.

Abortion for disability is something we need to discuss, and unfortunately, this discussion often falls out along eugenic lines. People justify it by arguing that disability is objectively awful, and obviously no one would want to have a disabled child. In fact, this is not usually what is going on in these situations, and in wrongful birth suits. What’s going on is a recognition that there’s no social support, that caring for a disabled child can be very costly, and that some parents do not feel equipped to handle it. Aslana notes that ‘[n]ot until the financial cost of raising a child becomes the same for the parent whether or not the child has a disability or is able-bodied, can this decision be made purely with consideration of disability-ethics,’ and unfortunately, most of the discussions about this issue revolve on disability-as-burden narratives, rather than on the social costs of ableism, like institutional lack of support for people with disabilities and tremendous pressure to abort disabled children. When you have family members telling you they will not provide any support if you choose not to terminate a pregnancy, what are you supposed to do?

The cost of child raising really shouldn’t ever have to be a factor in deciding whether to continue a pregnancy, but it is. Not just for parents with prenatal diagnoses of disability, but also for low income parents who may not be financially equipped to pay for a nondisabled child. Raising a child is expensive. Costs play a role in decisions about starting or adding to families, and those costs grow much greater when you add disability to the mix. It’s a big financial commitment and there’s often limited social support; look at the judgmental commentary that erupts over low-income people who dare to have children, and the language surrounding ‘welfare queens’ while society remains largely silent on the real welfare queens.