Today I'm joining many other bloggers for Blogging Against Disablism Day hosted by Diary of a Golfish.
Several months ago I came across a blog written by a doctor. He was describing having to tell parents their newborn most likely had Down syndrome.
He talked about how difficult it was to give, and receive, this news, and most times the family just "wants some hope, some chance that their baby will turn out normal after all." He goes on to say he doesn't usually like to take all hope away from a family, but in this situation "we simply can not tell them there's any chance their baby will be normal."
I found that very sad. No hope?
I don't envy doctor's having to deliver this news as I understand, know, and realize it isn't something a parent wants to hear...I was there myself almost 4 years ago. It wasn't news I wanted to hear; yet I wonder why it has to be such "bad" news, told so bleakly and solemnly. It's not a death sentence.
I know there are a lot of medical issues that go along with having an extra chromosome. I know there are challenges people with Down syndrome will face whether it be physically or intellectually. I know people with Down syndrome can, and do learn, along with their peers. They might learn slower, but they still learn. I know there are differences from those with Down syndrome and those without...sometimes there are glaring differences, but there is also a lot of sameness too.
Yes your child might have medical conditions and need surgeries, your child might need physical, speech, and occupational therapy. Why does that have to be looked on as a burden? What about people who need glasses to help their vision? Or hearing aids to help them hear? So people with Down syndrome need help to learn and do different things - it's not a bad thing, it just is.
No hope that the child will lead a normal life? What is normal anyway? It's all schematics isn't it?
You take your newborn home and raise your child, that is what is normal. You play, laugh, love, teach, feed, provide shelter for your newborn. That is what is normal. You're still a family whether your child has 46 or 47 chromosomes. Your child can participate in family activities and outings, playgroups, go to school. That is what is normal.
Why can't the news be delivered without saying there is no hope of a normal life? I beg to differ. I know the medical aspect of it has to be discussed, but then you deal with that and live life raising your child.
What won't be so normal anymore is seeing many individuals with Down syndrome in our future. They are slowly being wiped out by prenatal testing and "interrupting" of pregnancies (I won't get into all of that in this post)...but I did want to say something on that.
The last figures I've read said that Down syndrome occurs in 1 in 733 live births. The key word is live births. The statistics don't show how many actual pregnancies result in a baby with Down syndrome, but for those who do find out prenatally about 90% (some areas even higher) will terminate because of Down syndrome.
If even half of those terminations didn't happen can you imagine how much higher the rate of live births would be? Maybe my daughter would have a classmate or two like her instead of being the only one with Down syndrome. Maybe it would be a more common occurrence to see individuals with Down syndrome in the community and it wouldn't be such a fear of the unknown. Maybe if half of those pregnancies didn't end in a termination it would be almost, normal, to be born with an extra chromosome.
Think about it - if it's 1 in 733 live births, and 90% are terminating (those who find out prenatally) then maybe Down syndrome is a normal part of the genetic make-up, if it happens that often.
Maybe one day it will be just a part of the person, and not a defining sad moment at birth. Maybe labor and delivery rooms would sound like this,
"It's a boy! No hair, dark eyes, 46 chromosomes! Congratulations!" or
"It's a girl! Blond hair, blue eyes, and 47 chromosomes! Congratulations!"
Yes I can dream that one day society will recognize the normalcy of being different and we all have areas we need help in, but in the mean time I'm going to continue raising my daughter, 47 chromosomes - congratulations! - in a very "normal" way.
A follow-up to this post, based on an anon comment, can be found at Hope and Normalcy, Part 2.