Lot of people, both in the “on demand without apology” crowd and the disability rights/justice crowd, buying into the false dichotomy between respect and self-determination for people with disabilities and respect and self-determination for women (yes other people can get pregnant, but I never see posts that use gender inclusive language to talk about hypothetical abortions of hypothetical disabled fetuses for selfish reasons).
And it’s really frustrating to me because I think it is possible to talk about how it is not reasonable to expect someone to be enthusiastic about having to be a lifelong 24/7 unpaid PCA/home health aide and go bankrupt in the process trying to pay for care without talking about disabled children (not fetuses, alive toddlers) as burdens or damaged goods or tragedies. And a lot of the people (rightly) pushing back against the (incredibly wrongheaded) idea that a person choosing to terminate their own pregnancy can be eugenics don’t seem to get that.
CF is a particularly fraught condition right now, because medical advances are slowly turning it from a condition terminal in childhood to something potentially treatable. My personal philosophy here is that if a condition has a high likelihood of early mortality, that is something a prospective parent should know and be able to make informed decisions around. Some people will still choose to have the baby. The important part is that it is their choice.
A lot of the arguments about abortions for genetic conditions or fetal anomalies (note, I am saying anomalies, which is a neutral word. Having six fingers is an anomaly because five is the typical number. Having the brain form outside the skull is also an anomaly.) that I have seen lately involve people either saying or implying that these abortions need to be available because in these cases, termination is the only ethical or practical option, or that pregnancies with these complications should be terminated. And that is a problem, both because that judgment necessarily involves making assumptions about the value of the lives of adults and/or children with these conditions (see, anything that says it’s better/more compassionate to make sure people like this never have to be born/suffer/burden their families. That’s not something someone with, say, spina bifida wants to read!), and, more crucially, because that line of argument is still based in making decisions for the pregnant person about what they should and should not do with their own body and life.
Pregnant people, and people thinking about having children, should be able to make the most informed choice possible, so they can make the best decision for their own life. Sometimes the best decision for their own life is terminating a pregnancy due to fetal conditions that, while not immediately fatal, have high mortality and high care needs. Sometimes the best decision is to use the information to better prepare for those care needs. But is has to be their decision!













