Archive | April, 2013

What Exactly Is Going on Here?

7 Apr

Many powerful and heartbreaking blog posts have been written in recent weeks about Robert Ethan Saylor, a young man with Down syndrome who died at the hands of the police in Maryland after he refused to leave a movie theater following a showing of Zero Dark Thirty.

Like a steady drumbeat growing ever louder, these posts from parent activists have served as poignant calls for justice. They call for awareness of the supreme tragedy of the case but also for action — many are pressing for an independent investigation into his death, which seems like it could have been prevented so many times along the way. After Mr. Saylor apparently resisted an attempt by one officer to remove him from the theater, two other offers joined in, and Mr. Saylor ended up wearing three sets of handcuffs and lying face down on the floor. He had trouble breathing and later died; his death was ruled a homicide, and the cause of death was asphyxiation. All this simply because his health aide had told him to stay in his seat after the showing while she went to get the car.

A grand jury in Frederick, Md., declined to indict the officers, who were working off-duty as mall security when they were called to assist with Mr. Saylor. According to a report from the State Attorney for Frederick County, Md., Down’s syndrome, obesity, and heart disease made him more susceptible to sudden death in stressful conditions which would compromise his breathing. It’s almost like they’re saying it’s his own fault for having some health conditions, and yet let’s parse that phrasing a bit further: “stressful conditions which would compromise his breathing.” I don’t know about you, but I don’t normally find myself just happening into situations that would compromise my breathing.

I don’t know what convinced the grand jury that charges against the officers were not warranted. Without having access to the testimony from the 17 witnesses mentioned in the state attorney’s report, it’s hard for me to see things through the jury’s eyes, but I know well there are at least two sides to every story. As the parent of a young boy with Down syndrome, I can see one side more clearly than the other — all I see is that a grave injustice occurred for no apparent reason, and I support calls for an independent investigation because I don’t know all the facts. I would also like to see a full journalistic airing of the story — The New York Times and The Washington Post have written a few great opinion pieces about the case, and the Post wrote a nice, news-oriented feature article with loving details about Mr. Saylor’s life, but a comprehensive investigative piece by a major news department is also warranted — any takers? Finally, daily action by little people with big hearts has the potential to tip the scales. That would be you and me. Tune into this Facebook page and website for updates about the case and to read more great blog postings like this one or this one. For one-stop shopping, check out this blog for simple, concrete suggestions about what you can do to help. If you have a blog, write a post. If you are on Facebook, share one of the links I’ve mentioned.

If you have neither, simply tell a friend about the case. Or sign this online petition. Above all, please please understand that people in the Down syndrome community are not here before you to ask for special treatment. On the contrary, we are asking that you treat our children, our loved ones, as you would like you and yours to be treated. As equals. As beings worthy of respect and dignity. Just because someone does not communicate the way that you do doesn’t mean they don’t understand, that they have no words. (In fact, Mr. Saylor had words — witnesses overheard him saying “I want my Mommy,” a primal call for help that went unheeded. His mother was on her way to him when he died, reports said.)

It does not mean that their wishes can be brushed aside because, hey, they probably won’t even remember anyway if they are mistreated. In another appalling example of how little people expect of those with Down syndrome, a young New Jersey couple ended up separated and humiliated after they sat in the wrong row (but the right seats) at a movie theater for a romantic night out. All because the people whose seats they had mistakenly taken could not be bothered to politely point out their mistake and had the theater staff called. The examples don’t end there. In at least two other documented cases in recent years, the police used a questionable amount of force in dealing with young men with Down syndrome.

I have said it before and I will say it again. People with an intellectual disability are not dumb. They simply learn and express things differently than others might expect. I didn’t quite understand that either before I had a son with Down syndrome. So I am trying to explain to you in words what I have been been processing with my heart, that disability does not mean flawed. That it often means different, but think for a minute and realize that we all are different. That people with Down syndrome and other genetic or medical conditions are special just as we all are special, and sometimes fragile. Sometimes we all need to be, as the saying goes, “handled with care.” Have you ever been pregnant, or had a limb in a cast, or lost your voice but still had to be out in public, or carried a heavy sick child in your arms — or two heavy sick twin babies in car seats? Have you ever been miserably ill but still had to soldier on, go to work, drive the car, run the errands? Have you ever been in a place where you did not speak the language and had an important question to ask? Have you been lost on a strange dark road and confused?

These are all relatively minor ways to be in need, but they have all happened to me, and millions of us. And in each of these cases, I needed to be treated differently — differently than I would normally be treated, as well as differently from others around me. I needed a seat, a door held open, things picked off the ground, a sympathetic ear, a pause, maybe many pauses, a helping hand. Understanding. That’s what I needed, and what I usually got. Mr. Saylor needed understanding too. And respect — lots of respect — many pauses, some common sense and a gentle heart or two. Now, what his grieving family needs is justice. Please do what you, in your small way, can to help. If you belong to a local or national Down syndrome association, ask them what they are doing in this regard and volunteer to help.