Happy World Down Syndrome Day and Stuff (It's Probably the Drugs Talking)

Although I am currently sitting with one leg up on the coffee table, Robaxacet and a shot of Toradol on board, an icepack on my sciatic nerve... One butt cheek propped on a couch cushion, in my new home in the middle of the frozen Arctic... Don't think that I'm not aware that tomorrow is World Down Syndrome Day.

It's the most Holy of Holies in our little corner of the disability universe.  The day.  The big one.  Blue and yellow will be everywhere and Sedna help us, we are still with the mismatched and "silly" socks.   There will be pride, yes... and there should be pride.  The extra chromosome, the condition, the disability, the whatever-you-want-to-call it, the thing that is Down syndrome, does not preclude one from their humanity, their right to happiness (and the ability to seek that happiness). 

Pride.  Yes. 
Be loud and goddamned proud.

I'm also very aware that I don't get to hold my son every day any more... that would be the hazards of isolation nursing, being away from your family for long periods.  But, that doesn't make me any less involved in his parenting (even though I am physically thousands of miles away from him).  Ahhh, my little man and his newly found skills...  In the time since my last post, he is now walking and running.  He is talking more and although he has always been very good at getting his point across using a combination of sign and Wyatt-sign and sounds and body language, he's decided to go with words.  Which is cool, because that's how I communicate most of the time too.  I say most, as I have to admit that I do use a lot of non-sensical grunting, hand waving and sighing most of the time.  I just tell myself that it's part of being the mother of three kids.  Or a psych nurse.  Or something.  Yeah...

I have a lot of pride for him too.  I'm proud of all my kids.  Every time they figure something new out or add a new trick to the repertoire, I'm on about it for days.  They amaze me, these little people.  It amazes me that my eldest can rhyme off the first 10 elements of the periodic table.  It amazes me that my daughter, who is the spitting image of me (only prettier), can climb almost anything and completely destroy a room in under 30 seconds... and convince you that it is all in good fun.  It was no less amazing to find out that Wyatt, the guy who wasn't allowed to hold the phone for the longest time as he would press all the buttons and hang up on Mommy in Nunavut, decided to call both my BFF and my mother and have conversations with them both.  Just, y'know... because he was bored.  And he could.  And eff anybody that thought differently.  They might have not gotten the full gist of the conversation, but man, he was as pleased as anything at the results.  And so am I.  Way to show us up, dude.

There's a lot of other things that I'm aware of too, despite my new postal code and our flighty "InterNOT".  The 'new and improved asylum' debate (like that is somehow up for debate).   The sheltered workshops issue.  That cute is still king, supposed superpowers, angels and pedestal ableism, the r-word, the tragedy rhetoric that is still every-blessed-where, and somehow, in some way, devaluing or marginalizing a group of people is ok, because, y'know, that's your opinion and that fact alone somehow warrants validity. 

Oy.  I may need more pain killers for that lot.

I haven't written anything here since November.  I'm aware of that too.  That doesn't mean I've faded off into the sunset (or wandered off into a northern blizzard if that analogy is more appropriate and to your liking).  I just haven't had the spoons or the words to say what I've been mulling over.  That time is coming again, thankfully.  Once I get off this couch, that is (I've resorted to lying on my side and typing now).

There's a whole lot of awareness. Up. In. Here.  But, as I've said numerous times, that alone really doesn't do anything.  Getting better and finding my spoons and doing the education through the advocacy... well, that changes minds.  Making sure that both my twins are included fully in the classroom this fall, not just one of them... well, that is doing something.  All the little considerations and leanings in that I do... those help too. 

This is about as aware as this World Down Syndrome Day is going to get for me.  If I do get off this couch at some point, I may shuffle off into the sunshine and visit some friends.  I may wear socks too, but only because it is still -30 here and only in my boots.  I will Skype my family later on and hear of the day's discoveries and accomplishments.  The subject of Down syndrome may or may not come up.   But if it does, I'll answer questions to the best of my ability (as I generally do). 

It won't come up with family because Down syndrome is just an is at this point.  It's not the elephant in the room.  It's no longer the "we have to do this and this because of that" thing.  It's just one facet of my son.  It's a tiny part of our busy life.   It doesn't make more or get in the way of any of the love that is already there.  He's a boy, doing boy things and taking part in the world around him.  Like we all do.

That's the part that I wish more people understood. 


Happy World Down Syndrome Day
#WDSD15

Ugh.  I can't even...

Welcome to the T-21 Blog Hop - March 2014: World Down Syndrome Day

Today is World Down Syndrome Day, a day that we celebrate those with an extra copy of the 21st chromosome.

Our festivities however, always seemed to be tinged with a note of sadness, as those with Down syndrome and other intellectual disabilities continue to be discriminated against in all aspects of life.  From our everyday common language, to our medical systems, to our laws, to our education systems, we continue to deem those that are a little different as defective, inferior, not worthy.

Life, not worthy, of life.  Although it has been many years since Aktion T4, these eugenics principles still linger.

Of the many little educational factoids that you may read today about Down syndrome (including this list here), somewhere between 5 to 10 percent of those with an extra 21st chromosome are also diagnosed with an Autism spectrum disorder.  The intersectionality between these two communities, and in fact many more as well, is more substantial than you might think.

Join us today for the World Down Syndrome Day edition of the T21 Blog Hop.  Instead of the usual three days that it is open (representing the three copies of Trisomy 21), it will be extended to a full seven days.  Advocacy posts are welcome from all areas of neurodiversity:  whether showing your T21 pride, advocating for a better world for those with developmental delays or asking for once and for all for the world to #stopcombatingme, add your posts for seven days of blogging excellence.

A Fair Shot

Other than my monthly wrap ups and the blog hop, I've been taking a needed blogging hiatus.  Rest assured I will be back to this and my other online efforts at some point. But for now, I'm taking some needed me and family time.

Today however, is World Down Syndrome Day.  I could not let this pass by without notice.

Last year, I wrote about some of the issues that I had with awareness campaigns, those for Down syndrome in particular.  I talked about awareness vs acceptance; marginalization by the medical community; inspirational porn and pedestal ableism; derogatory slang such as the R word; and flat out homicide.  I still stand by each and every one of these; they are real issues faced by people with Down syndrome every day, along with their families, allies and loved ones.

Plenty of socks/wacky socks/odd socks may seem like a fun, silly thing to do, to create awareness, but what does it do really?

For the record, I hate socks, especially these horrible things.  *shudder*

Not a lot...   Outside of keeping your feet warm in what has been a god-awful winter.

Despite the presence of a lot of blue and yellow, including on Toronto's CN Tower and my current fingernail polish, not much will change about the lives with people living with Down syndrome today.  There will be pride, yes... there should always be that.  However, there will still be discrimination at the doctors office, by law enforcement, by teachers, counselors and therapists.  Much of it will be hidden under the guise of "meaning well" or paternalism, doing "what's best" for the person instead of considering individual needs, but it will still be there.  It may be based on old eugenics theories too, a sense of doing what's best for a skewed perception of "the greater good".  There is internalized ableism too within the community, and a lot of elitism even in the disability world towards those with intellectual disabilities.  There will still be a public perception of "lesser" and "sick" as our very language outlines how we really feel. 

As a society, we give a break to parents that murder/attempt to murder their children if they have a disability.  We wreathe these acts in compassion, that somehow the death of a child, of any person at the hands of another is okay if they have needs outside what is considered an able norm.  Instead of increasing community supports and education, we choose instead to buy into the tragedy rhetoric.   This year started out with another death of a person with Down syndrome, this time a 17 month old boy named Lucas Ruiz, who was poisoned not once, but twice by his parents in what they are calling a "mercy killing".  Both parents believed that their child who was born with an extra chromosome, a heart issue and required a feeding tube was "better off dead".   There are still many people who believe that he and people like my son should never have come into being at all, that Down syndrome is a burden to society.

After all the socks and banners and ribbons and awareness, and memoirs and conversations and "teaching moments", why are we still having these discussions?  Why are these things still happening?

What people with Down syndrome need is meaningful inclusion.  Is acceptance.  Equality.  PRIDE. A sense of community and of belonging.  Not socks.  Not pats on the head.  Not superpowers or heavenly qualities.  People with Down syndrome want a fair shot at having a happy life.

You know, the same stuff the rest of us want.  The same things I want for all three of my children, not just the "able" ones.

The same things we all keep writing about, over and over again.

Maybe this year we'll get lucky and someone will take the hint.

Happy World Down Syndrome Day.