Healthy =/= normal

Recently, a woman posted in an online support group I belong to. She’d just had her mid-pregnancy ultrasound and doctors thought there was a birth defect. She was looking for support/advice as she waited for her level II ultrasound. Since my son’s congenital anomaly was also found at my mid-pregnancy ultrasound and I remembered waiting for the level II (they told me they thought he had cancer, so that was fun), I jumped in and briefly shared my story, gave some recommendations on selecting a hospital with a good NICU, etc.

The woman never replied directly to me. When she posted again, she’d had her ultrasound. She came to joyfully report that her little girl was “normal” and “perfect” and there was “nothing wrong with her.”

Wow. I wasn’t really hurt or offended, just shocked at the lack of insight or consideration for anyone else’s feelings. It’s like someone showing up at a group for parents of gay children and saying, “I’m so happy, my son just brought home a girlfriend so I guess he’s not a homo after all!” Congratulations, you just insulted the very people you were looking to for help! There’s nothing to be ashamed of in finding out that you don’t belong in the group – that you were mistaken – but we could do without the bigotry.

I said I was happy for her, then moved into an explanation that there was nothing “wrong” with my son either, and that she might want to consider her words more carefully in the future. When I went back to see whether she had responded, the whole thread was gone. She must have asked a moderator to remove her post.

The reason I bring it up is not to shame this particular mom. I bring it up because this attitude is so prevalent and so accepted, as is the attitude that if your otherwise wanted unborn baby does have some sort of anomaly, just go ahead and terminate it. I received a private message from someone whose fetus had been diagnosed with a condition related to my son’s and she told me she was reluctant to terminate because she’d been through 8 rounds of IVF to conceive him. My head spun around when I read that. Eight rounds of IVF? Why would you even consider termination? That makes no freaking sense to me. It’s this “designer children” attitude we’ve developed, which I find very disturbing. It’s eugenics. I didn’t say that to her, just tried to point her to lots of balanced information, personal stories and people she could contact whose children were living with the exact same condition as hers. I assured her that there was no need to terminate. She never responded, so I don’t know what happened.

Finding out your child has a rare condition is terrifying. I know it is because I went through it. I’m not asking traumatized parents to be politically correct; this is so much deeper than political correctness. This is about how we define human beings. How we decide who’s good enough to live, and who’s not. How we regard and speak about the living children, like my son. Is he abnormal? Defective? His body didn’t form correctly, but is there something wrong with him?

No.

What we need is not political correctness, but an overhaul of our thinking about what normal is, what human is. We keep telling ourselves the lie that health/lack of problems=normal and the lives of people who don’t conform to this concept of normality aren’t really worth living. (This doesn’t end with birth; it continues with transplant discrimination and euthanasia for the elderly and disabled.) In reality, there are thousands of ways the human body and brain can malfunction, malform, and break down. That is normal. Pain is normal. Death is normal. It’s normal to try to avert or alleviate these things if we can, but don’t dehumanize people who experience them.

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