Friday, April 5, 2013

Who will speak for Ethan Saylor?

By Louise Kinross

Why are so few journalists, public figures and human-rights and disability groups willing to make a noise about the death of Robert Ethan Saylor, 26, who had Down syndrome, in a movie theatre?

On January 12, Saylor ended up face down on the ground in three sets of handcuffs and suffocated because he refused to get out of his seat following a showing of Zero Dark Thirty in Frederick, Maryland.

His worker, who had accompanied him, had gone to get the car. The theatre manager called mall security. It arrived in the form of three county sheriff deputies, who were moonlighting.

According to this Associated Press story, Saylor swore at the deputies when they told him to leave. When one put a hand on Saylor to move him, he resisted, so the other two joined in and the four men ended up "in a heap" in the aisle, says the AP story.

Someone called Saylor's mother and she jumped in her car, minutes away. 

The deputies handcuffed Saylor, who weighed almost 300 pounds, on his stomach. Some reports said they piled on top of him. He called out for his mother. Within a couple of minutes he was unresponsive and they rolled him over. Unable to find a pulse they undid the cuffs and began chest compressions.

The death was ruled a homicide by the coroner, and the autopsy report said he showed signs of positional asphyxia: he couldn't breathe given the way he was lying. But a grand jury decided no criminal charges were necessary and the deputies' attorney said they "did what was necessary."

If only they'd just done nothing.

The autopsy report says that his developmental disability, obesity, heart disease and a heart abnormality contributed to his death.

But the bottom line is that Saylor wouldn't have died if he hadn't been pushed to the ground and handcuffed on his stomach.

Who was Saylor a threat to? Certainly not THREE deputies. Saylor was unarmed and 5-foot-6.

Was the next showing of Zero Dark Thirty more important than this man's life?

I think the autopsy report illuminates a crucial point when it notes that Saylor's low IQ (his intellectual disability) contributed to his death.

Had Saylor been a man with typical intelligence and facial features who didn't speak English and refused to leave his seat, would the deputies have forced him, face-down, to the ground?

I highly doubt it.

I guarantee they would have searched for someone who could interpret for him. They would have afforded him this dignity. 

I think stereotypes about Down syndrome—about people with intellectual disability being less than human—were part of the mix here and fed fear in the deputies, contributing to their heavy-handed response.

Because of his differences, the deputies didn't know how to read Saylor's behaviour. They didn't know that he had a sensitivity to being touched. They didn't know whether his worker had told him to stay in his seat till she returned (apparently she had). Perhaps they didn't expect a person with Down syndrome to openly defy them.

In the scuffle that brought the three men and Saylor to the ground, I bet negative attitudes about Down syndrome kicked in automatically.

A French implicit association study last year showed that adults hold a negative bias against children with Down syndrome at an automatic or unconscious level—even when they openly say they accept children with disabilities. "These implicit associations are the result of social values...carried by our culture," lead researcher Claire Enea-Drapeau told me. They "are likely deeply embedded and difficult to break."

There is something about seeing our own vulnerability in people with mental disabilities that we can't stand, something we fear.

I was reminded of the Saylor story when I read over 400 comments to a New York Times' Motherlode post a few days ago called Outlawing Abortion Won't Help Children with Down Syndrome.

The post was a response to North Dakota outlawing abortion for genetic conditions like Down syndrome. Not many readers supported the law, but many argued for or against aborting fetuses with Down syndrome based on ability. People who deplored the high rate of terminations talked about children who'd exceeded expectations.

Indeed, the author writes of her four-year-old daughter: "I have been repeatedly surprised by her curiosity, her individual sense of humor and how much she has accomplished. She doesn’t fit the stereotypes at all. For this reason, it is troubling to me that rates of termination for pregnancies where Down syndrome is identified are extremely high."

But what if she was less able to 'do' things, to be accomplished? Is human value inherent, or tied to a person's abilities?

Readers who felt women had an obligation to abort a fetus with Down syndrome suggested children and adults who are less gifted and dependent have horrible lives. Further, they suck the life out of their families, they said, and dollars out of the health system.

It was hard not to feel the fear and hatred that leaked through these comments, the sense that people with intellectual disabilities were a threat to some collective social good.

Yesterday I heard Andrew Solomon, author of Far From The Tree, speak in Toronto. He talked about how differences that were once viewed as illnesses have come to be seen as identities. Deaf and gay cultures are prime examples.

To show us how far we'd come in accepting people with Down syndrome, he quoted this 1968 article from The Atlantic, written by a moral philosopher and theologian:

“People… have no reason to feel guilty about putting a Down's syndrome baby away, whether it's 'put away' in the sense of hidden in a sanitarium or in a more responsible lethal sense. It is sad; yes. Dreadful. But it carries no guilt. True guilt arises only from an offense against a person, and a Down's is not a person."

After reading the Motherlode comments, I couldn't help feeling that mainstream ideas about Down syndrome have not, sadly, evolved far from this depiction.

Most people don't acknowledge the disdain for Down syndrome they were raised on. They would never publicly state it. But hidden stereotypes can bubble up when we're less inhibited, for example, when we post anonymous comments on a news story.

They can also surface during times of confusion and fear, which seemed to characterize the deputies' response to Ethan Saylor (he used his second name).

Are deeply-rooted stereotypes that devalue people with Down syndrome also behind the relative silence—in the media and public—over Ethan Saylor's death?

You can sign a petition asking the Obama administration to investigate whether Ethan's civil rights were violated. And this petition calling for an independent investigation.


As the mom of a son with Down syndrome, I am so so saddened by this story that I uncharacteristically do not even know what to say. Thank you for saying it for me, Louise. This hits very close to home. Sue

I think we've all been reeling from the Saylor story, reeling in shock and recognition and not a little weariness at how much still needs to be done.

I, too, wrote of Allison P's Motherlode post and the comments that came with it -- I found myself feeling very enervated by it all.

I think this is EXACTLY right. It is a disgusting truth that our society still sees those with Ds as subhuman. Look at the comments in articles about Robert Saylor. No one discusses HIM as a PERSON. It is all about his Ds and the perceived problems his Ds caused to make his death inevitable.

This made me sick to my stomach. The truth hurts. Love hurts. The silence from our national advocacy groups leaves me time to ponder. Is their longevity dependent on the negative stereotypes? The way Ethan was "put down" was just one example of human rights violations against people with Ds. Ethan's death was lucky enough to get a bit of press and grassroots attention. RIP Ethan

Excellent post. "Deeply-rooted stereotypes that devalue people with Down syndrome" (and other intellectual delays) are at play it seems, in every aspect of this case, from the incident itself to attention the case has garnered (or lack thereof). We're seeing the same thing play out in the prenatal testing arena. As the parent of two children with Down syndrome, it is unconscionable to me. Why aren't more people screaming about it, or even asking questions?

Thanks for writing about this. Sadly, I think you are right... that the lack of noise and action is due to continuing stereotypes and a belief that people with Ds (and people with other IDs) just aren't equal to the rest of society.

We still have a long way to go.

Thank you for wording it so eloquently. This is exactly what I've been saying for weeks, but not nearly as well.

Thank you for connecting the pieces so eloquently.I have been blogging about these issues for weeks - not nearly as succinctly or a brilliantly as you have.

My husband and I were angry reading the Motherlode piece and the comments. You clearly addressed our same concerns.

We have a six year old son with Down syndrome. I cannot thank you enough.

I'm still talking about it. I check the petition on daily and I am encouraged that the numbers have gone up, albeit too slowly for my liking. I think that maybe we were lulled into a sense of "all is well" because we have our own little communities that we go around in. My son is 13 and we have only experienced little bits of negativity; staring, laughing, but I never really feared for his safety until this story came out. We seem to be at a tipping point in the U.S. when it comes to Down syndrome (awareness, acceptance, inclusion...whatever you want to call it). There is so much good news coming out about our community up against so much bad. It can go either way, but I don't think backwards is an option. It was not an option for black Americans, it was not an option for gay Americans and it is definitely not an option for disabled Americans. We need to fight for our children's dignity as if their lives depend on it because as it turns out, they do.

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It upset me as well, but just because you have down syndrome, doesn't mean your above the law. Do I think they were wrong for being so rough with him? Yes of course, but also the young man was severly overweight and with down syndrome, we know how bad that is for them. Which probably contributed to him being suffocated. My brother has down syndrome and I love him dearly, but my mom never babies him or treats him like a toddler who has no responsibility and cognitive age shouldn't matter. Clearly the young man wasn't taught how to handle certain situations and where was his worker? They should've never left his side for a second.

I don't think anyone is suggesting he is above the law. They are suggesting that he shouldn't have been killed over a movie ticket, or a misunderstanding, or because he didn't react as quickly as someone without a cognitive disability. People with Down syndrome tend to be on the heavier side as adults because they usually have lower muscle tone and slower metabolisms. More than half of the adults in this country are overweight, should they be handcuffed on their faces over the price of a movie ticket? If they cry out for help will they big ignored as well? This isn't about special treatment, in fact, it's the opposite of that. If a "typical" overweight man was put on his face by police officers over a misunderstanding and died because of it, would there be consequences? You'd better believe there would be. Why is it not the same for Ethan?

I agree with most of this but really have to nit pick a bit. I think you're totally wrong about how if someone was not speaking English this wouldn't have happened. People who look and sound foreign are brutalized by the police. The difference is that their communities rise up to protest.

Assuming that deeply ingrained stereotypes and prejudices are a contributing factor, and I do think that is true, the question then is begged - how do we overcome those stereotypes?

Stereotypes take a long time to unwind and change. Ask a moslem, or a black man, or any woman in America.

Until people realize that the stereotypes are B.S., they will persist.

Until people see more people with DS in daily life, they will not realize the stereotypes are BS.

The change starts with us, though it may take a generation or more.

I think the first step is to transfer the Voice of Advocacy to those with Down Syndrome.

Step 1: The NDSS Board should fire Executive Director Jonathan Coleman, and replace him with an Adult with Down Syndrome.

If you support removing the stereotypes, there is no reason you can't back this idea. If you bristle at the idea, you may have just proved the author's point.

Peace, and Rock On!!
Little Bird's Dad

Hi Ginger -- I live in Toronto, one of the most multicultural cities in the world. I don't think the same series of events would have occurred with a non English-speaking person here. I agree that that might not be the case in other parts of Canada or the U.S. Thanks for writing!

I too disagree with the point that the same series of events would not have occurred with a "non-english speaking" person here. Visible minorities especially those who are of Black or Aboriginal background experience systemic, institutional hegemonic oppression because of their racial,sexual,gender and class identity on a daily basis. What happened to Ethan Saylor is appalling to say the very least. More needs to be done to ensure this never happens again and that Ethan Saylor did not die in vain. I don't think it's helpful to suggest that "non-english speaking" persons here. I'm not even entirely clear on what you mean by "non-english speaking" persons. Just because you might have not heard what is affecting different marginalized groups does not mean it cannot happen or that an issue like this hasn't already happened. On a daily basis visible minorities especially indigenous and black people(especially young people) are unfairly targeted by law enforcement in Canada and the U.S.. Therefore it is unfair to suggest that these experiences might not happen. If anything, those vulnerable groups mentioned might be at a higher risk for police brutality especially if they are of visible minority and have a disability. Perhaps collaborating with other organizations, individuals and lobbying groups that might already be working with law enforcement on how to properly train and support people especially those of visible minority or persons who may have a physical,intellectual or invisible disability or even mental illness is what's needed. And of course that the people the law and police is supposed to protect are held accountable through the proper legal channels.

Hi Anonymous -- thanks for writing, I didn't characterize the person who didn't speak English as being a visible minority. I was simply trying to provide another example of a breakdown in communication, when the deputies would not have understood fully the reason why the person didn't want to move. I am very familiar with racism because I have two children who are black. I agree that training for police in working with the groups you mentioned is needed. Thanks for stopping by!

This is shocking, no one should be treated in this way. However, if his mom lived a few minutes away, why did his worker leave him alone in the movie theatre? Why did she/he not ask management before he was left alone? The carer must have know that he would not like being touched etc - you cannot lay all the blame with the police. Why are you complaining they were moonlighting - maybe if there were not so many cut backs they would not be. Some of the responsibility has to lie with his care giver/parents - he should not have been left alone without prior agreement from the management.