Further Thoughts on ‘Wrongful Birth’

I’ve been seeing wrongful birth crop up again in the news lately, and I thought it was worth a second look after my Tiger Beatdown post on the subject. It’s a loaded and complicated issue, and before proceeding, I want to note that I’m going to be discussing some very intimate, raw subjects when it comes to disability; this post will always be here, and readers who aren’t ready for it right now are more than welcome to come back to it when they’re in a better place to do so.

The wrongful birth suit, for those unfamiliar with the concept, is a lawsuit based on the premise that a disabled child ‘shouldn’t have been born,’ usually demanding damages from a doctor, hospital, and related personnel. Such suits are typically limited to cases where babies are born with significant intellectual, developmental, or cognitive impairments that may interfere with their ability to perform tasks of daily living. The damages are intended to pay for the lifelong cost of providing health care for the child and meeting other needs, including the potential for one-on-one care and support; this can be a particular worry for parents who are trying to think ahead about what will happen after they pass away and aren’t able to actively participate in an adult disabled child’s care.

On the surface, the idea that a disabled child’s birth could be ‘wrongful’ is appalling—it suggests that to be disabled is to be a tragedy, a burden, something awful. Some of these suits have contested that if the parents had known the child would have impairments, they would have chosen to terminate the pregnancy, as for example in this case of the family of a child with Down syndrome. This speaks both generally to ableism in society, and to the chilling effects of genetic testing and prenatal evaluations in a world where people want to eliminate disability from the landscape.

Disability terrifies and frightens many people, especially in children. Congenital disabilities are widely regarded as tragedies and thanks to the advances we’ve made in medicine, many people think of them as curable, by which they mean erasable. When you’re talking about eliminating medical conditions from the landscape, you’re talking about eliminating the people born with those conditions. In the case of something like cleft lip and palate, you might be fighting industrial pollution and arguing that babies should be born without craniofacial damage, but that they should still be born, and should be full and active members of society. When you’re talking about developmental disabilities, though, you’re saying that people shouldn’t be born.

And that, unfortunately, is sometimes the thrust of wrongful birth suits: parents didn’t get what they wanted, and they want a redo. Since they can’t have that, they at least want to be compensated for the monster the doctor left them with when they were expecting an angel. The increase in number of such suits, meanwhile, makes doctors ever more wary when it comes to managing pregnant patients, because they don’t want to be slapped with a lawsuit for an event that is sometimes utterly beyond control or prediction. De novo mutations happen.

But abortion for disability, and ‘wrongful birth,’ is not as simple as any side of the discussion might make it seem, from anti-choicers wanting to use disabled children as pawns (‘outlaw abortion to save the children!’) to pro-choice advocates using the threat of disability to argue for full reproductive rights (‘support abortion because otherwise you might get stuck with a disabled child!’). The fact is that raising a disabled child is physically, intellectually, and economically demanding, and not every family is equipped to handle it.

Especially in a society that lacks supports for disability. As I argued at Tiger Beatdown when I discussed this issue previously, you can’t really talk honestly about abortion for disability until some of the factors in the situation are resolved. The fact is that parents may choose to abort a loved, wanted, and eagerly anticipated pregnancy because they cannot afford the costs of childrearing, and that goes for potentially disabled and nondisabled fetuses alike. Raising children is expensive. Disability increases that expense.

And parents of disabled children face a lot of obstacles. Many live in regions where they are expected to provide full time care without compensation, or with minimal compensation. They can have trouble accessing health care for themselves and their children. They must fight every step of the way when it comes to enrolling their children in school and engaging with society. They receive hatemail like letters from people suggesting they should euthanise their children.

Living with a disability is hard. While I spend a lot of my time arguing for full rights and dignity for disabled people, that doesn’t mean I think disability is a cakewalk (or roll). Self-advocacy requires constant justifications of your very existence and sometimes a fight to communicate with people who don’t or refuse to understand you. Being disabled requires constantly balancing concerns that don’t even occur to nondisabled people, and those concerns can become very complex with comorbidities and certain disabilities.

So the issue here in many cases isn’t necessarily that parents are furious that they ended up with a defective child, but that they’re trying to think ahead for that child’s needs. They’re well aware that they may not be able to meet the needs of their children, and they’re using the suit to get what society, and the government, will not provide. Sadly, even a multi-million dollar suit is not going to cover the costs of living comfortably with a disability for life, but it can be a step in the right direction, and it can be put in a trust administered by a third party to ensure it’s used specifically for the child’s needs, not those of the parents.

Any discussion about wrongful birth suits (starting with getting rid of that awful name) must include a discussion about the lack of social supports for disabled people. Because without that aspect, the conversation rings hollow.