Congratulations on the baby, do you guys want a boy or a girl?
Oh we don’t care, just so long as the baby’s healthy
This is such a common conversation that occurs during early pregnancy and it makes many a disabled person cringe, myself included. Don’t get me wrong, I understand the sentiment and as far as I’m concerned, I was born healthy. I had not illnesses but I did have an Autism Spectrum Disorder and Cerebral Palsy. Anyone who tries to tell me that these things make me sick is risking their own health.
I rather like Karni Liddell’s take on it (watch her Tedx Talk here). She understands the sentiment and often thinks it herself but when she hears it, she is faced with the fact that she was that unwanted unhealthy baby. She does not however advocate for a change in perspective. She asks for a slight change in language. Instead of saying “I just want my baby to be healthy” replacing it with “I just want my baby to be happy”. The sentiment is just as true and if you do end up with a disabled child it can remain true without ever making that child feel unwanted.
Conversations about pregnancy and children are however getting more complicated and the previously mentioned conversation is now not the worst thing a person can say about the prospect of a disabled child. We now live in a world of social media and I must say I generally loath pregnant people on Facebook, whether disability comes up or not. I find ultrasound pictures unsettling and kinda creepy and yet I have friends who use them as their profile pics. Why can’t people wait until the kid is born to overshare pictures?
Today however I was horrified by a post that showed up on my wall. A friend who seems to live her life publicly online decided to share her excitement over her prenatal test results.
Not only did she gloat that that the tests were negative for genetic disorders like Down’s Syndrome, She also bragged that apparently the odds of her having a child with a genetic condition were actually lower than the average negative test results.
It is not enough that her child is unlikely to have a condition that can be tested for. She must publicly brag that it is even less likely than the usual unlikeliness, as if it were some kind of accomplishment.
This is the sort of personal medical information that no one needs to know and certainly does not need to be shared with her hundreds of Facebook friends. Her husband even commented that it was the best news that he could ask for.
This takes the rather innocent “Healthy Baby” conversation to a more direct “I am so glad I am not having a child like that!” conversation. And to be honest I am also glad they are not having that child because no child deserves parents who can speak so callously about people like them.
The reality is however, that there are far more congenital conditions that can’t be tested for than there are that can. Take my ASD and Cerebral Palsy, there was no warning for either and the latter likely wasn’t a result of a difficult birth as I wasn’t born in medical distress and in fact was not diagnosed until I was over a year old. I was also not born premature.
I can’t imagine how a child might feel if they were disabled in some way for which there is no test, if they go through their parents all to well documented lives and see the glee they felt when they thought they had avoided their child.
This is not an argument against prenatal testing. It is however a request that the results be handled respectfully. Even if the results are negative, you may end up with a disabled child. You may end up with an able-died child who through later accident or illness becomes disabled (this is actually more likely as there are more people with acquired disabilities than there are with congenital ones). Please don’t teach your children that they are inherently better or more loveable for being nondisabled because that might change but their value shouldn’t. And lastly don’t do this because in the semi-public nature of Facebook, the likelihood that this will be seen by someone affected by these conditions is high and people should not be made to feel lesser than in what is supposed to be a social space among friends.