If you’re not familiar with the concept of a “wrongful birth” or “wrongful life” lawsuit, you can get introduced to them through this news story of a couple in Oregon being awarded $3 million because their daughter was born with Down Syndrome, even though the pregnancy tested negative for it during the usual battery of prenatal tests. I’ve seen other cases like this, but this particular one is getting a lot of press, and I think it’s time I speak out, as a pro-choice advocate and a disabled activist, about how damaging these lawsuits are, not just to the children born to couples who sue, but to the lives of disabled people in general.
Wrongful birth/life lawsuits horrify me for several reasons. First, at the very core of it, suing because your child was born with a disability sends a message that the one suing doesn’t believe that a disabled life is as whole, valuable, and worthy as a non-disabled life, and sees disability as being always tied to burden. The couple in the news article above cited financial concerns as the reason for the lawsuit- to care for their daughter, since she will require care into adulthood. I’m not impressed; there are multiple resources to assist parents of children with developmental disabilities, particularly in progressive states like Oregon, and if you have the resources necessary to bring about a lawsuit, then you have the money to raise a child with a disability. The real issue at hand with wrongful birth lawsuits is that parents are disappointed with the child they got, since they didn’t want or expect a disabled child to be theirs.
An important, yet overlooked and unpopular fact that of life is that, in almost all circumstances, disability, temporary or permanent, is a nigh inevitability for everybody at one point. In general, if you have a child, there’s no way of guaranteeing they will be the child you envisioned yourself having- children are not moulding blocks of clay awaiting a parents’ hands to help them take shape. A child could be queer or trans, could get into an accident and need a wheelchair or crutches, catch an ear infection and become deaf, could end up converting to a different religion from one’s parents, have different desires and interests … The possibilities are endless, and those possibilities are the very foundation of the beauty of life and (neuro)diversity. Only pseudo-utopian societies of the Sci-Fi world could ever consider the idea of “designer” children to be something desirable and needed.
It’s not acceptable to sue because your child isn’t what you expected. Children are not pizzas that you can refuse to pay for because it came with anchovies when you wanted bell peppers, or a dress you refund because it didn’t fit right around your belly, or a DVD you got off EBay or Amazon which came with a scratch on it. Part of becoming a parent should be realizing the full humanity and autonomy of your child, from birth, and not thinking that you have the final word over who they are and what kind of person they will become. In the words of Kahlil Ghibran:
Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.
You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.
Speaking of the house of tomorrow, whenever I hear a story like this, my mind always goes one place: The future. In fifteen (maybe less, maybe more) years, when the child who is at the centre of these types of lawsuit becomes old enough to access the internet and learn to search, what happens if they find out, through googling their parents’ names or theirs, that their parents were so distraught at their birth and their disability, felt so cheated out of the normal child they felt they were entitled to, that they got millions of dollars out of it?* I don’t even want to think about the kind of damage that could do to one’s self-image, particularly if it’s already damaged by having parents who don’t try very hard to hide their resentment of your disability.
Opposing wrongful birth/life lawsuits isn’t an anti-choice act. It’s speaking up against one of the many callous disregards for the value of life with a disability that one encounters in an ableist society. I do not begrudge access to these tests which determine disability in-utero, or the right of someone to terminate a pregnancy for any reason. But once a disabled child is born, it’s in the best interest of everyone to reconsider why we consider disability to be synonymous with a disappointment or a death sentence, because all disability, in the end, is really just what you choose make of it. Believing that your child is a multi-million dollar disappointment is the first step onto a path of a truly disheartening self-fulfilling prophesy.
* Please don’t give me that crap about how they won’t be able to comprehend it because of their disability. There is no way of predicting what kind of things someone with a developmental disability will or will not be able to comprehend when they’re older at birth.