Brendan and Gemma

Brendan and Gemma

Thursday, March 21, 2013

World Down Syndrome Day

Public Service Announcement: I will be using some 'swear-words'....but I won't be using words to marginalize humans.

I can't help wonder why on Earth we need an awareness day for people. Why don't we just know to treat all people with respect without having to have their subtle and not-so-subtle differences explained to us? What the fuck?....really.

So, March 21st is World Down Syndrome Day, a day to raise awareness about people with Down syndrome. It's date, 3/21 is a clever play on the fact that Down syndrome is diagnosed with a karyotype which shows a third copy of Chromosome 21. It's a newer are most awareness days. I think the heart of the founders and supporters are in the right place, and I'm not here to criticize them.  I'm here to question why in a "civilized" society awareness is necessary, and seemingly a pre-requisite to acceptance.
Is there anyone who is unaware what Down syndrome is??? Or, maybe they're aware but freaked out? feel like they have to somehow rearrange who they are because the person looking back at them isn't just like them? I don't know...maybe I'm not being fair, but it's what I sense sometimes when I'm out with Gemma.
People learn this when they are young.  My 7 year old is still trying to sort out what it means for his little sister to have Ds, he said, "Mom, do NOT eat mandarin oranges or they will make you puke." "What?" I said, "Gemma eats them every day and doesn't puke, they are her favorite." His reply was, "Gemma can eat them without puking because she has Down syndrome." least he thinks it's a super power. 

Now, is it me or does every day of the year have a significance to one group of people or another? I have two concerns with this: First, there are just too many days to keep track of. Since every day, week or month is dedicated to something, nobody outside of the target group pays attention to them anymore. Second, every day is a day for me to advocate for acceptance and inclusion for my daughter who happens to have an extra chromosome, and others who have the same distinction. Yes, that is what I will fight for...but I will also fight for humanity as a whole...because isn't that what all groups have in common? A desire to be treated with dignity and respect?
Because this is important to me, I will do my best with what I have and what I know. What could be more important? Well, doesn't that depend who you ask? 

Isn't it shocking that there is a word that can cut down almost anyone? Don't be too smart or too stupid or you'll be called on it. Don't be too black or too white. Don't be too tall or too short. Don't be too rich or too poor. Too pretty or too ugly. Don't sleep around (applies primarily to those who have a vagina)...but I don't know where some people think all those penises would go since they also disapprove more of male to male sex than they do of female to female sex. Don't be gay, don't be bi, don't be a prude or uptight. Don't be mean and selfish, but don't be a door mat and stand up for yourself. (fer fuck's sake) ?? what?? Don't be a loser, don't be a jock, don't be a cheerleader, don't be a show-off, don't be proud of your accomplishments, don't be a burn out, don't be a drop out, don't be too fat and don't be too thin. If you're sick it's your fault, if you're too healthy you're a nut. Just sit down, shut up, stay distracted and regurgitate what you are told without asking questions. Is it any wonder depression rates are through the roof? 

Screech...sorry for the tangent, but what I'd really like to see on Down syndrome day is a promise that the moms and dads and families of people living with Ds won't have to fight so hard for inclusion when it is already supposed to be a given in the schools and communities. I'd like people to stop looking at others who are different from themselves as 'scary'. Because it really isn't only about Ds, it's about all of's about humanity. We are not owed an explanation before we decide to be patient with someone and treat them with respect. We shouldn't stick people in a box and make assumptions based on the outer packaging of their heart. 

So what do we do? We have days of awareness, we have walks, we talk, we reach out and spread the word. We keep picking away at the walls that have been built up around our children and the people we love. The walls are getting weak, they will come down. We continue to fight for inclusion. I think it is vitally important in schools because that is one of our earliest institutions of socialization. Don't put the kids with different abilities all in a room together and make the general student body think something must be very concerning about them. Allow them to be together, make friends and realize that differences are part of being human.

I apologize now that this didn't wind up being an awful lot about Ds day and 'awareness', but I just am not capable of thinking of my daughter as an island...separate from the rest of society and the people who make it up. So it is more of a day to talk about acceptance and inclusion of anyone who doesn't fit in that truly narrow margin that would qualify them as 'normal'. 
“Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen.” Ephesians 4:29

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