What if….

This is not a post about sewing, or anything creative for that matter.  It’s a rather personal post, because it touches my life in a very immediate way, but I feel compelled to blog about this…. to “think out loud” as it were.

I follow a page on Facebook called Monica & David, which is a fan page for a movie about…. well…. Monica and David.  They met.  They fell in love.  They wanted to get married.  There was concern about the marriage.  They end up happily married.  They have Down syndrome.

A link was posted on their Facebook page to an article entitled “The end of Down syndrome”.  Another version is here. The point of the article was the good news of a fool-proof prenatal blood test that would effectively make Down syndrome an extinct ‘disease’. Y’know, we like to treat and cure diseases in the 21st century, and Down syndrome, with it’s extra 21st chromosome, is technically a disease. And a world with one less disease is a better world.

Right?

But why Down syndrome?  I like people with Down syndrome. I am somehow drawn to them. They are funny; they read books; they like to live. They go to school, dance, skate, ski, paint, create, work at Starbucks, garden, travel. They love babies, and they have friends and lovers and families.  The ones I know are fiercely determined to be independent and refuse all “help”.  They want to have a job and make money to spend on things they like. I went shopping today, and met two women with Down syndrome. One was waiting for her ride after working out at the gym (good for her – it’s more than I do!). The other was happily discussing what would go into her grocery cart.

I like people with Down syndrome. I guess I’m biased, but it’s the disability I prefer. I mean, have you ever seen babies cuter that babies with Down syndrome? They are just so damned CUTE that you want to smother them with kisses.  And I guess I should know.  I have a daughter named Sarah, and Sarah has Down syndrome.  Her disability was not my choice.  I don’t think any human being would deliberately choose to have disability as part of their life.  Disability is uncomfortable.  It’s awkward.  We feel sorry for it.  It’s annoying to modify our expectations and behaviour to be inclusive.  It’s difficult to teach humans to be considerate, understanding, helpful and to include others with disability in their play.  I know.  I have two other daughters that struggle every day with patience, kindness, re-thinking how they’re going to explain or do a task or idea so that peace reigns in my household. Sarah was 13 weeks along when I watched her play with her hands and kick her small feet inside my uterus on the ultrasound screen in my ob/gyn’s office when he told me there was a “problem with the baby”. 

I already had a child at home.  I was looking at the new baby on the ultrasound monitor, doing what babies do in the womb:  kick, play with their hands and get hiccups.  He suggested terminating.  WTF?  I’m looking at the baby I’m going to “terminate”.  So he wrote out a list of possible diagnoses based on his observations and booked me for an amniocentesis to give me time to think about it and confirm the “problem”.  I took that list home and spent hours on the internet…. learning.  Learning that Trisomy 13 and 18 were a possibility, and they would prove fatal within a year of birth.  Learning that cystic hygromas were being successfully treated in Japan.  Reading story after story about children with Down syndrome and how rich and interesting their lives were – just like my “normal” firstborn’s life, for heaven’s sake!  Stumbling across a British medical journal article about babies terminated because they had extra nuchal tissue (the “problem” according to my ob/gyn), and once they were terminated discovering that 90% of them were without a chromosomal anomaly.  And, finally, concluding that if this baby did end up having Down syndrome, it was a walk in the park – pie in the sky – peaches and cream with a cherry on top – compared to any of the other possibilities.

We didn’t terminate Sarah’s life.  It was my choice to not terminate, and in that respect, I made the choice to have disability be part of my life.  Not that I didn’t (and still don’t)agonize about her quality of life and how people would treat her.  Disability makes me uncomfortable as a parent.  Children make fun of my child, ignore her, stare at her; look askance at me.  And I was afraid.  I don’t like disability.  Disability makes me uncomfortable.  I don’t like to feel sorry for people.  I feel sorry for people with disabilities.  And what they heck am I supposed to say to them?  But I don’t feel sorry for people with Down syndrome.  I just get downright steaming angry when people treat them like dirt because they talk indistinctly or don’t understand what was said, or look “different”.

Sarah knows she has Down syndrome.  She doesn’t like Down syndrome.  She says she doesn’t want to be special, i.e. abnormal,  anymore.  My eldest daughter is “gifted”.  She’s special – in a special class in a special school.  My youngest daughter is also “gifted”.  She’ll be in a special class in a special school, too.  All my girls are “abnormal”.

I think what Sarah really means is that she is bloody well fed up with people thinking of her as a “disease” that needs to be cured or helped or “therapied” into being what the majority of the bell curve is like.  Or treated with contempt and disdain by ignorant peers who have not been taught the imperatives of empathy, consideration and “putting other people first”. 

Imagine a world without Down syndrome.  I guess if one doesn’t have any contact with it, then it’s a good place.  I won’t deny I think about this.  Two weeks ago Sarah spent 3 days away at camp with her school.  It was a shock to me how damned simple it was parenting two children who are considered “normal” by society.  I didn’t miss the strife, bickering, arguing, yelling, misery, badgering, repetitive questions and general miserableness that can sometimes happen 30 times a day.  But I also know that I would be very sad to miss the infectious belly laughs, dry sense of humour, willing cheerfulness to work at chores and joie de vivre that is typically Sarah.

And another thought, why do prenatal tests target Down syndrome specifically?  What’s so horrible about Down syndrome?  Did you know 4.5 million people worldwide have Down syndrome?  That 90 out of 100 babies with Down syndrome are never given the chance to live?  I wonder what disability will be targeted next for prenatal screening.  Brave new world with a perfectly engineered human race, here we come.  And we’ll all be as selfish as hell for all our perfection.