Wednesday, March 27, 2013

I Want to Write About Something Else

But I can' heart is still breaking for Ethan Saylor and his family. His mom will never get to hold him again. I look down at Jude and I see Ethan. Ethan could be my son. He could be your son. I am tired of hearing that he was angry, defiant. I am also sick of comments like "A person with Down syndrome who is angry is scary." I worked with developmentally disabled adults in college. One of my favorite clients was a nonverbal woman with Down syndrome and schizophrenia. Most of the time she was pretty chilled and awesome. She enjoyed painting her nails with me and hanging around while I cooked breakfast. But sometimes she had episodes and they were, honestly, a little scary. But it never occurred to me as she started throwing things or when she came at me to throw her down and handcuff her with three sets of cuffs. There were other ways to protect her and myself. If I, a poorly trained and underpaid aide, could handle these moments without killing her, I suspect that the highly trained officers in Ethan Saylor's case could have shown restraint.

What it boils down to is that they didn't want to bother talking him down. He wasn't worth their time or effort. He had Down syndrome.

There are a couple of points I want to draw on tonight.

First, remember my fact about how people with Down syndrome are not happy all the time? Remember how I said they get angry, cry, have the full range of human emotions? I suggested that by denying people with Down syndrome the right to be emotionally human we deny them some humanity. I would suggest that this case is a prime example  of how this comes about. I wonder if the security guards were reacting to Ethan not acting like a stereotype.

Second, I want to publicly challenge the NDSS. I, as well as many others, feel incredibly let down by their public statement after meeting with the Department of Justice on this issue. While I of course applaud any movement for better training and more awareness (there's that word again), I am utterly shocked that there was no push for an independent investigation. I am trying to figure out why our national voice is failing us so hard right now. What are they afraid of? I suspect they are afraid we'll appear uppity, impolite, too loud. It's sort of like when George Takei told us we were hurting our cause by being offended by a cat named "Tarder Sauce" aka "Tard." I wonder if the NDSS wants us to be good little citizens who are humbly grateful  for any scraps that come our way.

I am tired of scraps. NDSS writes "At NDSS, we envision a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities. Ethan deserved to be a welcomed member of his community." I envision such a world for Jude but it's not going to happen if we allow Ethan's death to quietly fade away.  Being welcomed in the community means not being killed, and it also means that when someone is killed in such a way that the community feels outrage at your death. Honestly, it's embarrassing that our national representation is not organizing protest marches and campaigns. If this was a case involving an African-American man or a Hispanic man or a gay man, the organizations representing these groups would have already mobilized.

Again I ask you to please:
Sign the petition for Ethan Saylor at
Go to the NDSS facebook page and leave a comment asking them to do more. Like the comments already there that are pushing for change.
Tell everyone you know about Ethan. Blog about it. Share links on Facebook. Spread the word.
I also invite you to an online vigil for Ethan. Information is here.


Crystal Rhew Staley said...

I'm with you. My heart is still breaking.

Anonymous said...

Agreed. Thanks for taking action. My heart still breaks. It could have been my son, who was also born with Down syndrome. We're all human.

Rachel Douglas said...

I just got lost in your life and I love it. You make me feel ok for feeling these same things.

jen32258 said...

I absolutely, positively could not agree with you more on this...on ALL points. NDSS is cowering down to the law enforcement involved. If they were truly being our voice - do they not hear the outrage that we are clearly expressing?!? Kids and adults are NOT always happy - ask any caregiver. These (essentially) rent-a-cops didn't want to be bothered - this is a side-job that cops take for easy money. Damn Robert for making them actually work. And apparently they decided that since they were off-duty they didn't have to follow their own procedural guidelines on preventing deaths in custody. Guideline #1: "As soon as the subject is handcuffed, get him off his stomach. Turn him on his side or place him in a seated position". Put simply - cut off oxygen supply and we ALL would have a "heart condition". Where is NDSS's outrage? Does anyone think that the media would not be ALL OVER this case had NDSS done their part? Now - NDSS and even some of the other group leaders seem to be spending their time bashing some of us who are speaking out on social media. Great solidarity. Their arrogance is sickening. We were told by the President of NDSC that although they did issue a call for an independent investigation "We will alert the community if we feel that we've hit a brick wall" HUH??

Thanks for continuing to take a stand on this, GTG and letting it continue to get to you as it does me and many others....including I am sure Robert's mother (who could have been any one of us).

Ginger Stickney said...

Thanks Rachel. Your words mean a lot.

And I am still angry, outraged.