Thursday, January 9, 2014

Shame On Us

Today is Robert Ethan Saylor's 27th birthday.  

If you don't know Ethan, I have written about him here, herehere and also here.

I will sum up Ethan's story in a few words:  He was born in 1987.  He had Down syndrome.  He loved and was loved.  He died on January 12, 2013, three days after his 26th birthday, over the price of a movie ticket.

My last line usually garners much debate in articles, but essentially, that is what happened.  The exact details of the incident that happened in the few minutes between screenings of "Zero Dark Thirty" may never come out, because maddeningly, shockingly, sadly the off duty officers involved in Ethan's death were never charged with anything.  Ethan's death was ruled a homicide, but no charges were ever filed (you can read more about that, here).

I find it hard to understand.  If someone can be charged with involuntary manslaughter when they accidentally kill someone with their car, shouldn't they be charged with the same if the accidentally kill someone with their hands?  I am no legal scholar, but something seems amiss, here.

Since that day, it has been mainly on the family to speak out.  They were joined by some Down syndrome advocates in crying out for justice.  We have called upon our national organizations to act, to denounce and to support and eventually, with much prodding from the advocates, our national organizations began to speak out, though,  too quietly and nicely for my taste.  If it had been up to me, as director of a national organization WHOSE VERY REASON FOR EXISTING is to advocate for those with Down syndrome, I would have called for an ad in every national paper saying "Down syndrome is not a cause of death".  But, that's just me.

So, it was mostly up to the family and a small group of fierce advocates to get the story told.  Slowly, articles began to appear in national papers, but still there were plenty of people even in the Down syndrome community that hadn't heard about the story, even six months after it happened and even still, today one year later.  I find that absolutely appalling.  I find it hard to understand why you can say the name Trayvon Martin and everyone knows whom you are speaking of, but saying the name Ethan Saylor doesn't even necessarily ring a bell with people who should care the most.

Part of me understands that people don't want to be reminded of all the terrible things that happen in the world.  I can relate to that.  I don't watch the news with any regularity because of it; it all seems like bad news, from the top stories to the weather.  They may save 45 seconds at the end for some kind of "feel good" moment, as if that will erase the last half hour from our collective psyche.  It doesn't work.

So, many of us surround ourselves with what feels good and we try to ignore the bad and the ugly.  We look at cute baby pictures instead of dealing with what is frightening.  I do it, too.  There are times when calling for justice seems like a monumental task; mostly, because it is.  There are times when all I want is to hug my own kids and look at pictures of babies and kittens and to stick my fingers in my ears and say "la la la la, I can't hear you".  And I do; sometimes, for weeks.

I have to get back to the fight, though.  I can't tolerate just being sad or angry.  I have to act, or else I feel like I have no right to complain.  I deserve an injust world if I am not willing to fight for justice.  

I think this is a lesson that the Down syndrome community needs to learn from the LGBTQ community.  When one of theirs is hurt or killed, we all hear about it.  We all react.  Those of us who have the will, act, in ways big and small, so that justice can be carried out.  We work together to make the world better, not just for LGBTQ people, but eventually, for everyone.  

I have written before about this line of people waiting for justice.  Individuals with intellectual disabilities are on the back of the justice bus, it seems.  I wonder why we can't see that the line really doesn't exist and the bus is a figment of our imagination as well.  We are all human and we all want and need the same things.  A cry from one of us should be heard by all of us, regardless of race, sex, station, orientation, religion or lack thereof, etc.  If I can't see a bit of myself in every other living being, what hope do I have that someone will relate to me?

I urge the national Down syndrome groups to start acting for real change.  Do not let another year go by without calling loudly, publicly for change in the public perception of those with Down syndrome.  It's not about preaching to the choir.  It's about demanding that the rights for our children are recognized.  You have the means, you have the forum, all you need is the will.

I urge gay rights groups and women's rights groups and minority rights groups to look at Ethan and see your own fight and join us.

I urge individuals to stop crying over how sad this is and DO SOMETHING!  Pick up a phone, send an email, write a letter or a comment or a blog post or SOMETHING.  Take action, or expect to see more of the same again and again.

If Ethan's tragic death can mean a change in the way people with Down syndrome are treated, there may be some measure of peace his family could receive in that knowledge.  Isn't it the least we can do for them?  For Ethan?  For other victims of injustice?

If we don't care enough to act, shame on us.


  1. I urge every single person who reads this to share it with the NDSS, NDSC, GDSC and ask them to promote this message. I urge every single person to pass this on to the committee that was formed by the Governor of Maryland to let them know we are watching for action to make sur they are not just another acronym that says they advocate.

  2. Yes. And Yes. And I get it and you're right.
    And on top of all that, I feel your "labels" tell the complete story as well.
    I hope we can all kick up enough dust to get more folks to notice and ask questions. This is not over.

    1. my labels? Not sure what you mean. Thanks for your comment!