Should I get prenatal genetic testing?

Ask Aimee is a new advice column on navigating life as a parent with a disabled child.

Should I get prenatal genetic testing?

Dear Aimee Abled-Mom of A Disabled Kid,

We have a young child who was just diagnosed, and I found out I’m pregnant again. Do you believe in genetic testing? Should I get prenatal genetic testing? We aren’t sure what to do.

Signed,

Love, Just Can’t Go Through This Again

Dear Just Can’t:

There are no easy answers to your question.

All I can say here is that whether or not to get prenatal genetic testing is an ethical dilemma. The disability community has very strong feelings about the ethics of genetic testing, which I can understand. Wanting to screen for disability and genetic conditions and upon finding one, opting for abortion instead, implies a negative worth of disability and genetic conditions, and by extension, of disabled and affected people en masse. That is something that abled and healthy people embarking on their reproductive journey don’t think about.

They also don’t think about the value of a life. Once my daughter was diagnosed I felt robbed in advance because it is unlikely that she will live to adulthood. It seemed grossly unfair to me and I walked around mourning this loss that had not yet happened, until a disabled friend of mine whose body hurt the way my daughter’s hurts reminded me that I was not the judge of the value of a life or a lifetime, and that maybe when my daughter’s body is ready to go, it will have been enough time for her, even if it is not enough for me. That a lifespan for a disabled body may be just right for that body, and that is something my mind needs to adjust to.

On the other hand, it is your body, your rules. Your family, your politics. Think it through, and whatever informed decision you make will be the right one for your family.

Should I get prenatal genetic testing?CLICK TO TWEET

Whatever you decide, there’s just one more thing to think about. You say you can’t bear to go through this again and I get that. But the thing I know I can’t bear to go through is what I’ve come to think of as the disability version of “the talk,” or the conversation I will have to have with my disabled child someday about this. About genetic testing. That is, about why it exists. I’ll come right out and say it to you: Because most people don’t want disabled babies. Most people would not choose to have disabled babies. Most people get genetic testing to make sure they don’t have disabled babies. But I don’t want to have to say that to her.

I don’t have to say it now. And maybe not soon. But someday, certainly, if she lives to adulthood and arrives at her own decision about becoming a parent. Unless the world changes dramatically for disabled people, she will have to learn about genetic testing. And what I definitely can’t bear to go through is what happens after that, when she asks about whether or not we did testing when she was in utero (we didn’t) and what we would have done if we had, and her disability, which is genetic, had shown up.

So I’m not going to answer your question. Only you can answer it for yourself. But I will tell you that I’m so glad my kid is here and I bet you are so glad your older kid is here and if it’s hard, it’s because the world is hard and parenting is hard and inaccessibility is hard and getting the resources you need is hard and you and I need to fight for inclusion to make things better for the next kid who comes along and needs it. Whoever that kid is.

Love, Aimee

Xoxo Aimee