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.