Monday, March 25, 2013

Cue the Carpenters in 3, 2, 1...We've Only Just Begun

I recently "liked" and then, within about ten days, "un-liked" a group on Facebook.  

I liked them because they seemed a bit edgier than the typical Down syndrome page.  

I un-liked them because I was turned off by what I saw as disrespect towards those who had been fighting for years for our children with Down syndrome; a fight that many on the page had only entered into recently.  

I took it personally.  

I now realize that this is silly.  They are mad about how the world sees and treats people with Down syndrome and so am I.  The fight over whether blue nails or wacky socks is a better way to support World Down Syndrome Day is a silly one.  It's time to band together, even if we don't always agree.  It's time for full inclusion for our children, with no exceptions. It's not about making friends with everyone who has a kid with Down syndrome.

And so, the fight continues.

In my last post, I talked about Robert Ethan Saylor; a young man with Down syndrome who died at the hands of the police that he idolized.

Here is some more reaction to the verdict by the grand jury...

I wonder where we go from here.  Where can we go when even national Down syndrome groups are putting part of the blame for Ethan's death squarely on the shoulders of Down syndrome?

Self loathing, much?  How do we move forward in this climate?  How do we affect meaningful change when even those who should be on our side are making it harder?   And don't even get me started on some of the hateful comments from the general public.  I can't even begin to fathom the froth that some will whip up at the sight of differences, much less try and process it.  I just have to ignore it, for now.

I think I found part of the answer to moving forward in the movies and television shows that I have been drawn to, recently.  It's funny how the subconscious works. 

First, I re-watched Les Miserables, which is basically about fighting even when you will probably die a horrible death and never see the fruits of your labor; but at least you'll die fighting. 

Second, I watched part of the series "The Abolitionists" on PBS.  This one really got me thinking.  The parallels between the American slave and the American individual with Down syndrome became so clear; at least to me.  And then I thought, "god, I hope it doesn't take 300 years".  

So, drawing more parallels to slavery and the acceptance of blacks as first human, then free, then landowners and voters, then on to full fledged members of society no different than whites.  Um, yeah.  Do you see the problem here?  

The huge, glaring problem is that they are still fighting; along with women and gays and every other marginalized group out there.  Are we at the back of this line or are we a part of it?  I think we are a part of it, just not enough people realize it yet.  And the thing that scares me the most is that some people haven't even gotten to the "human" part as far as those with disabilities are concerned. Forget school and inclusion.  Forget cute campaigns and slogans and nail colors and socks.  There are some people who don't even see our kids as HUMAN BEINGS.  It's like slave culture 150 + years ago!

What do you do with that?!?

I guess the first step is to ignore the haters (because they will always be there, even 300 years later) and focus on those who are not so closed minded.   We need to become as vocal and well organized as the groups marching in pride parades and maybe (hopefully) join forces with some of them, because in the end, all any of us want is equality and inclusion and acceptance.  We have to fight for the first two and the last will come. 

This guy knows what I am talking about...

Lastly, I see a huge need to embrace Down syndrome as a part of the human condition.  Just like being born homosexual or female or black; Down syndrome is a part of life.  It's what we do with what we are born with that matters and the first part of moving forward has to be accepting ourselves and our children for what they are.  

For example, I've learned that my child really, really sucks at math.  He does.  Part of this has to do with the fact that I also really, really suck at math, but another part is that he has Down syndrome and that makes learning math even harder.  

I don't want to deny that my child has challenges.  I don't want him to feel that Down syndrome is something he should feel ashamed of, or that he needs to "pass" as typical to be accepted.  I'm ok with him learning at his own pace in a class that is compromised of other children who also learn at that pace.  It's not that I don't want him included with the "typical" (yeah, I am really starting to hate that term) children all the time, it's that I have learned that right now, for him, this is the placement that makes him feel the most successful.  I see it as the same as my oldest son being in a lower level Algebra class and A.P. History.  He learns best in an environment that is suited to his learning level and style.  

And seriously, screw math!  Who cares?  My kid is good at reading, telling jokes and is a warehouse of useless facts and movie quotes that he will gladly recite to anyone who will listen.  As long as he can count change at the grocery store, I don't see a lack of math skills as an impediment to his future.  I haven't used the algebra that it took me two semesters to learn (and forget immediately) ever.  

We need to embrace Down syndrome.  It is a part of us.  Regardless of what happens in the future, we need to fight for our kids today. No more back of the bus.  No more blaming the victim.  It's time to be loud and proud.


  1. You have hit on the biggest barrier we face; that in so many subtle (or not so subtle) ways, many people do not accept those with Ds as fully human. I think most of them do not even realize that they deny people with Ds their humanity. From lumping people with Ds together under various stereotypes, to blaming the syndrome when a person with Ds is victimized, to the false belief that a person with Ds never grows up and into adult desires, to the glorification of everyday accomplishments that serves to focus attention on the syndrome and not the person... It all diminishes the underlying truth that people with Down syndrome are as completely human as you or me.

  2. IT's all too much! And that has nothing to do with out children. The "all too much" is the outside of our home #4CX&! that we and our children get dealt. But yes, a little Les Mis goes a long way for perspective. :)!