Wednesday, July 17, 2013

Isn't a person more than a brain?

Oh boy.

It's worse than I thought.

The hatred against people with intellectual disabilities.

Three cases in point.

In January a 26-year-old man with Down syndrome suffocated to death in a movie theatre in Frederick, Maryland when he was handcuffed and pushed to the ground by three county sheriff deputies who were working extra hours as mall security. 

Robert Ethan Saylorknown as Ethanhad just seen "Zero Dark Thirty" and was angry that he couldn't see the movie again. His worker couldn't convince him to leave so she went to get the car.

When I wrote about the incident in April, I assumed that the deputy called to remove Saylor didn't know how to "read" his refusal to get up. 

A report released Monday shows the sheriff was not in the dark.

According to the report, Saylor's 18-year-old worker had returned, and told the sheriff that Saylor had Down syndrome; that he was angry because he didn't want to go home and would likely swear if spoken to; and that "he will freak out" if touched (he had sensory issues). "Please don't touch him," she said.

She asked the deputy "to wait it out" she wrote in her statement. 

"Next thing I know, there are I think three or four cops holding Ethan, trying to put him in handcuffs."

Saylor was 5 foot 6, unarmed and almost 300 pounds. As he screamed and swore and cried for his mother, they pulled him down an exit ramp and pushed him to the ground. Some reports said they piled on top of him.

"One customer told police an officer had his knee on Saylor's lower back while the other deputies held Saylor's shoulders." Within a couple of minutes he was unresponsive. The officers rolled him over, undid the three sets of handcuffs they'd applied, and began chest compressions. He never regained consciousness.

Remember. This man lost his life over a $10 movie ticket.

The death was ruled a homicide: the coroner found signs that Saylor was lying in a position in which he couldn't breathe (positional asphyxia). His larynx was fractured and he had blood in his lungs. 

I think stereotypes about Down syndromeabout people with intellectual disability being less than humanfed fear in the deputies, prompting their heavy-handed response. There's something about seeing our own vulnerability in people with mental disabilities that we can't stand, something we have to stamp down.

Why did the other 21 patrons not speak up, rush to Saylor's aid? 

Why did a grand jury decide no criminal charges were needed?

Why did the deputies' attorney say the officers "did what was necessary."

Why was there relative silence from media, human rights groupseven disability organizations?

Why, given that Saylor was a regular customer, did the theatre call security in the first place? 

I think it had something to do with those deeply embedded biases carried in our culture that devalue people with intellectual disabilities. That disdain for people who are slow to pick things up, a disdain we were all raised on, continue to be raised on. That negative biasat an unconscious and automatic levelthat French researchers identified in adults who outwardly said they accepted children with Down syndrome.

"We were born in weakness and we will die in weakness," humanist Jean Vanier told me, but our culture's brain elite doesn't want to be reminded of this. Its members are too busy pretending otherwise.

Second case in point.  

Drake, in a new song, pairs autism with intellectual disability as the ultimate put-down: "I’m artistic, you ni**as is autistic, retarded."

Third case.

Ironically, instead of acknowledging that some people with autism have intellectual disability, and asserting the inherent value of ALL people with autism, ALL people, regardless of IQ, Autism Speaks posted this response: "These lyrics are offensive and perpetuate negative stereotypes. There are many inspiring individuals with autism and other disabilities who have achieved great success across a variety of artforms, including music."

Yes, there are many artists who have autism (some of whom have intellectual disability). There are also many people with autism who have intellectual disability and don't have an exceptional talentartistic or otherwisethat can be sold in the marketplace.

Are they any less human?

It seems to me that in the same way that people with physical disabilities tend to distance themselves from people with intellectual disabilities, many within the autism community want to create an autism "brand" that excludes certain kinds of brain differences. 

When I read about the concept of neurodiversity, I don't hear it applied to people with autism and low intelligence. I hear it applied to people with autism who have atypical, off-the-charts intelligence in an area that's conventionally valued. In other words, I hear people talk about the value of brain difference when it manifests itself in a way that can be valued commercially.

We value brain diversity, but only so far as it allows you to "do something" that can be bought and sold. 

Is that a flexible way of thinking? Or is it another form of "brainism?"

Some of the greatest stigma comes from the medical profession. At a Montreal Children's Hospital conference on the ethics of care for disabled children, a neonatologist made this admission: “There is a feeling among my colleaguesan unspoken and probably unconscious biasbetween physical and mental disability. Sometimes neonatologists think if you're not perfect mentally, you're better off dead."

So why, then, do people with intellectual disabilities mean the world to their families?

"As I walked up our driveway hours before he died, I never thought that it would be the last time I would hear 'Emmy’s back!' shouted with so much enthusiasm it came through the closed windows," writes Emma Saylor, Ethan's sister, in We need answers in my brother's death. "Never again will I be hugged so tightly that my feet are lifted off the floor. And on my wedding day, I will only dream of what it would have been like to see the joy on my brother’s face as he and my father walked me down the aisle, the way Ethan had talked about since we were children." 


Thank you for your eloquent and well-crafted post, Louise.

I believe that discrimination against people with mental disabilities is a human rights issue.

And unless all the disability communities join together to demand for human rights for children and loved ones and themselves...well, nothing is ever ever going to change.

This first starts with having these difficult conversations. Thank you to Louise and Bloom for giving us the forum to speak up.

Thank you for this wise post Louise. In a conversation on my blog today, I was reminded of how much we like to apply the label "high-functioning" to people with autism or DS or other intellectual conditions. As if their ability to do certain socially rewarded tasks makes them different (and more valuable) than their peers who are "low-functioning."

Yes, yes, and yes. Thank you, Louise.

dear louise, thank you for this post. your writing is always so illuminating, shining the most obvious questions in the most obvious places.

do you know this is the first time i let myself cry about the tragedy of ethan saylor's death? for obvious reasons, this has scared me so deeply. i have read about his horror story many times and have repeatedly felt physically nauseous, but i couldn't bare to let it touch me deeper... a frightening reality for a mother of a daughter with ds.

the questions remain about what it means to be human, what we label as weakness, how me make space for that inside ourselves, how we treat others when we're threatened, how we forgive such unforgivable actions, how life goes on with such injustices and how we keep moving forward with and in spite of it all...

sending my love

Such a powerful post. There are so many blatant acts and signs of ableism everywhere. It's an additional blow that much of the world doesn't seem to care or doesn't see them in the same way other discriminatory acts are viewed. It's almost as if ableism is an acceptable form of oppression. Thank-you for writing this piece and inspiring dialogue.

Louise, maybe you can write to Drake and his agent about his lyrics and let us know the response you get?

I agree with one of the other posters who said that this is a human rights issue. How could more people not be aware of such a tragedy? I am horrified to think that this can happen this day and age? I am new to blogging and I don't have a child with DS but my son was born with a rare skin disease and will grow up with a visual difference as well as possibly other health issues. Since I am raising a son who is different, it is almost intolerable to hear about these kinds of things. On the other hand it also motivates me to want to write and create awareness. Thank you for writing such a thought provoking post.

Sadly, you are right on the money, Louise. There is a pervasive notion (with deep roots in the work of well respected ethicists and moral philosophers) that people with severe cognitive disabilities are NOT human. Traditionally, philosophers have argued that moral personhood is derived from 'practical reason' or put simply, the ability to think and recognize the self in the world. Where does this leave those with cognitive impairments such as Alzheimer's, severe mental illness or severe cognitive disability? Eva Kittay in her work defines that group of people as being human on account of an idea she proposes 'that we are all some mother's child'. She describes the archetype newborn/mother relationship as the root of civil society and NO ONE is excluded from that relationship, therefore no one can be considered not human, including those with cognitive disabilities. Yes, this is a human rights issue, but it's more than that. It's a moral, ethical issue that forces us to consider to what is most fundamental about being human. It is tragic and ironic that this poor young man called for his mother in his last minutes of life. We are all some mother's child, indeed.

As a person, this sickens and makes me angry. As a mother it makes me horribly sad. As the mother of an autistic son who often doesn't respond to others in socially acceptable ways, it scares the heck out of me!

Did everyone see this?