For Ethan Saylor

Unless you happen to live near me -- or happen to be friends with me on Facebook, you likely have not seen or heard this story. 

Robert "Ethan" Saylor, a 26-year-old man with Down Syndrome, went to see the movie "Zero Dark Thirty" with his aide on January 12th, 2013.  After the movie, Ethan went back into the theater, because he wanted to see it again.  When asked to leave or to purchase another ticket, Ethan refused (due to the fact that he did not have any money on him).  Security (police moonlighting as mall security) was called.  Ethan continued to refuse to leave, and became agitated (as the police were warned by his aide).  His mother reports that, even as this was occurring, Ethan was on the phone attempting to get someone to come and give him money to buy another movie ticket.  This fact is not being reported -- and was not acknowledged, as it appears the officers did not take the time to piece together what Ethan may be doing, and he was unable to communicate this verbally. 

Ethan was then handcuffed and started to be taken out of the theater.  He was taken down to the ground -- on his stomach -- where he stopped breathing.  His death was ruled a homicide.  There was blood in his lungs and unexplained damage to his larynx.  His mother was on her way to the theater, called by Ethan's aide.  She was 5 minutes away.

The grand jury ruled that no further investigation was necessary.  The three officers involved have continued to work and received no consequences.  Ethan was unarmed.  He was reportedly calling for his mother when he died.  He was a young man with a developmental disability.  Some reports state that Down Syndrome -- a developmental disability, and not a disease -- was a factor in his death.

This, of course, is only a rough sketch of what happened, from the information I have gathered.  There are plenty of articles you can read if you want more of the story, but the fact of the matter is that his family is STILL looking for the full story.  They are still looking for answers.  They are just beginning this fight for justice.

Problem number 1: The police department acknowledges that their officers were not trained in managing crises involving individuals with disabilities.  This is unacceptable.  There are different skills that are needed.  There are different ways of managing the crisis.  Even just knowledge of what Down Syndrome is, and what behaviors are common for individuals with Down Syndrome (like...noncompliance, for example) could have changed the situation.  Knowing to give the person space and time to de-escalate.  Knowing not to touch a person with a developmental disability, as it may further escalate them.  Knowing that individuals with disabilities often are more prone to asphyxiation when on their stomach due to low muscle tone and decreased core strength.  I'm not saying they need a degree in special education or psychology.  I'm saying that knowledge of any ONE of the above four factors could have prevented this tragedy from occurring.  I'm saying that an hour long training, or even a simple fact sheet that is reviewed, could have easily contained the above information (and more).  And Ethan could still be alive.

Ethan was not being aggressive and attacking others in the theater.  He just wanted to watch the $12 movie once more.  A 26-year-old man died over a $12 movie at the hands of police officers.  Have you let that sink in?

Problem number 2: Why is Ethan's death -- which was ruled a homicide -- not being prosecuted as a homicide?  Why is there not more media coverage and outrage?  Why is the family still waiting for answers, 7 months later?  Why are they still fighting to have an independent investigation done to hopefully reveal some answers?

I know the answer.  In my gut, I know the answer, but it hurts me to type it.  The answer to all of the above questions is this: people with disabilities are not as valued as people who are able-bodied and developmentally and neurologically typical.   People with disabilities are still feared, and their lives, deaths, and injustices do not register on people's radar in quite the same way.  People with disabilities continue to be seen as less worthy.  People with disabilities continue to be seen as less human.

I can hear people arguing with me about this.  "But...no...that's not true.  Things like this just don't happen very often.  This was a very unusual situation." 

If that's true, then I guess you haven't heard about this.  Or this.  Or this.  Or this.  Or about the number of men, women, and children with disabilities who die or are injured while being restrained.  Or how about the stories told to me by the men and women I worked with who had spent their entire lives in "developmental centers" or "institutions?"  Would you prefer to hear the stories straight from their mouths?  What about the young woman I am currently with who does not understand that she is being bullied, but is being so severely bullied, a teacher and a classmate finally came forward to her parents.  The family had to get a lawyer involved because the school was not responding to stop the bullying. 

So let's think about it this way instead.  Ethan was one year younger than me.  Let's say that, instead, something happened at that same movie theater.  Let's say that, instead, I was the one taken out of the movie theater in handcuffs.  Let's say, instead, that I was the one who died in police custody.  Let's say that after I died, the officers were not suspended and were permitted to continue working.  Let's say that they continued to allege that, even though my death was ruled a homicide, they had done nothing wrong and were merely following protocol.  Is that different?  Is it different when you change the players such that it was a 27 year old, white, straight, cisgender, nondisabled female who died senselessly?  If it IS different, think about why.  What values do you hold that make it different?  What is it about my life that is different than Ethan's?  What is it about my death that would warrant more of a response?  Is it more of an injustice?  Is my life worth more than his?  Could you look me in the eye and tell me that?  Could you look Ethan's mother in the eye and say that to her?  Or how about Ethan?  Or another young person with Down Syndrome?  Could you look them in the eye and tell them that their death would not be quite as much of an injustice?

The history of our understanding of disabilities has everything to do with this.  In the beginning, disability was understood through what has been termed the "moral model."  Disability was seen as stemming from a family's sin or wrongdoing.  Persons with disabilities were seen as not fully human, and they were shut away from society.  They were given "evil" or "magical" attributes (and were occasionally seen as exceedingly good or "saintlike").  Our basic ideas of persons with disabilities as being weak and requiring mercy and compassion, as well as our lingering fear of disabilities, stem from this history. 

As a society, we moved into what is understood as the "medical (or normalcy) model" of disability, which indicates that disability is something to be fixed or cured.  The goal is to eliminate the disability and move towards normalcy.  This is progress.

There are people who are attempting to push us forward further still towards a "minority model" understanding, through which disability is viewed, not as a consequence of an individual's abilities and needs, but as a result of the environment surrounding him.  A common, easy to understand example: a person who uses a wheelchair is able to access areas that are wheelchair accessible.  When he/she encounters a place that is not accessible, this is NOT the result of his/her disability, but a failure in the environment. 

Ethan's death was not due to his Down Syndrome.  Ethan's death was in part the result of fear and ignorance.  Ethan was not "disabled" by his diagnosis of Down Syndrome.  He was disabled -- and ultimately killed by -- the fact that the people in the position of authority did not know how to best respond to his needs.  That is an environmental and organizational failure.  That is not a reflection on Ethan, his disability, his ability, or his behavior.  Ethan's extra 21st chromosome did not kill him.  Ignorance did.  Let's not let ignorance, fear, and devaluation continue to dictate the decisions that are made.  We as a society can be better.  The Saylors deserve more.  Ethan deserves more. 

This is for Ethan.  This is for Ethan's family.  And this is also for the many, many children, young adults, and older adults with disabilities that I know and love.  Your lives are valuable.  There are many of us who stand with you in this fight.

If you need your heart to be further broken, read this by his younger sister, published in the Washington Post.

Or this article, also recently posted in the Washington Post.

If you read nothing else I posted, at least go sign this petition from the family, asking for an independent investigation. 

If you want ideas of what you can do, or you want to learn more, visit this site with its list of resources.

If you want to learn more about Down Syndrome, visit the National Down Syndrome Society.

Full disclosure: I met Ethan on several occasions.  I worked for a summer with his mother, a RN.  I met his sister.  However, I maintain that I would be this angry if it were someone that I had never met.