Disability In Utero: Why Women Should Not be Shamed for Terminating
A piece supporting the right to choose whether or not to continue disabled pregnancies.
“Three years ago, I was pregnant with my third child. A routine check up turned up red flags in the diagnostics system that showed my baby could have Down’s Syndrome. The doctor immediately scheduled me for an amniotic fluid test a few weeks later to confirm. During that wait, I was reserved and scared. No one wanted to ask me or [my husband] what we were going to do and the idea of abortion was emotionally wrecking. The tests were thankfully false but even now I know that as difficult as that decision [to abort] was, I would have still done it.” -L.M.*
Too often those of us active in the conversation surrounding reproductive rights find ourselves unable or perhaps unwilling to confront the grey area of reproduction and abortion regarding disabled persons or to be exact, disabled fetuses. It is a difficult subject to breach, mainly because reproductive rights activists and disability activists find themselves at odds when it comes to abortion. Pro-choice advocates support the safe, conscious, and consensual choice to procreate, whether that means terminating or not. This is not to say that disability activists do not support this as well, but rather some see this freedom as supporting the abortion of disabled fetuses. Disability activists who denounce these liberties do so because they see it as a form of eugenics. My hope in writing this is not to say that disabled bodies are less than able bodies, but instead to unify both forms of thought and to illustrate my reasons for supporting the choice to both terminate and not terminate disabled pregnancies.
My introduction to the subject came in the form of Marsha Saxton’s essay Disability Rights and Selective Abortion. I read this around the time my close friend L.M. disclosed information about her pregnancy. Until then I had never considered abortion of disabled fetuses as its own topic and the idea of doing so as eugenic. It was then that I first heard of the debate on disability and abortion, and realized the impact and influence it held in the discussion of choice and reproductive rights. As someone who is deeply pro-choice, the discourse shifted my perception into including other bodies and experiences. Saxton claimed the problem with aborting disabled fetuses was not the choice to abort itself, but rather that the act perpetuated the idea that disabled bodies were something unwanted. I found this claim sound, but I was also troubled by my friend’s personal experience, which showed the decision was not so simple.
In the United States, 70–85% of women who discovered problems in their pregnancies, including genetic issues such as Down’s, chose to terminate them. Disability activists point to societal and medical pressures to terminate for these numbers and it is mostly true. Almost from the moment a woman discovers she is pregnant, the race for prenatals, screenings, and other preventative measures is on. The problem I find with this is not that women choose to abort disabled fetuses, but that there is so much pressure to do so that it’s almost not a choice. With some women having gone as far as to sue doctors who have failed to detect or inform of disabilities until after birth, it’s clearly a driving force for doctors who opt for abortion. In addition, the image of a disabled child isn’t necessarily one our society celebrates, despite advancements (technological or otherwise) that increase the quality and expectancy of life. Women who find themselves in this situation face much hardship and just like any other potential abortion, an immense amount of thought is put into it.
On the other side, great strides have been made to further prevent women from having such a choice. North Dakota’s House Bill 1305 clearly defines genetics as an invalid basis for termination. This bars women who would seek abortions for such reasons from getting one, thus placing them in the position of taking on a child they don’t want, or placing them in the care of people ill equipped for the job. Furthermore, this assumes these women can afford the care of a special needs child and potentially forces them and their families into financial crisis. It’s estimated that by the age a child turns 17, they will have amounted roughly $230,000 in costs. For a disabled child, that increases to $1.4 million, and the costs continue throughout their lifetime. A disabled child is not a burden, but it is a responsibility and not one all are prepared for. However, those who chose to do so should have the right and support to, without external pressures.
While the way we see and talk about disability is lacking, it makes sense to put collective effort into making this world a better place for disabled persons, those that are with us and those that are yet to be born. Change in the medical field’s approach to women with these pregnancies is also critical to the situation, because it helps the woman make an informed decision and one that is right for her. Disability advocates fight for the lives of the disabled and reproductive rights advocates for the choices in procreation, but if the choice does not include all factors and experiences, then it cannot be called inclusive. In the end the choice to raise or not raise a child based on disability, determined In Utero, is one left to the parent.
*Name withheld for privacy