Uncomfortable Truths

Three months ago today, a man died. His name is Robert Ethan Saylor (“Ethan”) and he died over a movie ticket.

After watching a movie along with his personal care assistant (PCA), he remained inside the building while his PCA went to get the car. Mr. Saylor went back inside the theater to watch another screening of the movie, but did not buy an additional ticket. Movie theater staff were not able to get him to leave or purchase the additional ticket so they contacted mall security. Three mall security guards responded, all off-duty law enforcement officers moonlighting at the mall, and attempted to get Mr. Saylor to leave the theater.

Witness reports state that Mr. Saylor was “verbally and physically resistant” to the officers, but we do not know much more than that – the why he refused, or the how, or how long they gave him to collect his thoughts and understand the situation. And while witnesses report his resistance, they also report that he was shouting for his “mommy” all along. In response, the officers used three pairs of handcuffs to tie Mr. Saylor’s hands behind his back and placed him in a prone position on the floor. In that position, Mr. Saylor stopped breathing. Witness reports state that bystanders – not the officers – noticed he had stopped breathing and informed the officers. The officers removed the cuffs and performed CPR.

Mr. Saylor died. Tell me, in what world does a reasonable human being (much less three) hear a grown man, with an obvious cognitive disability, call for his mommy and think the appropriate response is to cuff him and put him face first on the ground? We are willing to surround a compound full of weapons for days on end while negotiators try for a peaceful resolution, but one man – unarmed – in a movie theater requires immediate, forceful restraint that results in his death?

The coroner ruled the death a homicide, but did indicate that Mr. Saylor’s health conditions (heart disease and obesity and, strangely, Down syndrome itself) may have contributed to the speed of Mr. Saylor’s asphyxiation. Because this was a fatality at the hands of off-duty law enforcement officers, the case was brought to a Grand Jury who then reviewed the evidence but decided not to bring forward criminal charges against the officers. It was indicated that Mr. Saylor was “compromised” by “his Down syndrome.”

I’ve said it once, I’ll say it a thousand times: Down syndrome in and of itself is not a way to die. It is not a deadly condition.

I am livid. I am heartbroken. I am scared. I am advocating for justice.

What makes this tragedy even more horrific is the response – from those within Down syndrome world and those on the outside. There are people claiming it’s Mr. Saylor’s fault (yes, because it is reasonable to be arrested over a movie ticket; it is reasonable to be cuffed and die over a movie ticket). There are people claiming that his mother “never should have let him leave the house.” There are people claiming these officers were completely right in their reaction – despite the fact that between the three they have 49 years of law enforcement experience that should have taught them, explicitly, that there was no need for escalation in this scenario. There are people who want us to hush up and move on, and people who think that more training for law enforcement is the answer. Tell me: what would training teach you that 49 years of experience can’t?

A man died over a movie ticket. Literally a movie ticket. A man died while calling for his mom. Over a movie ticket.

Frankly, none of these reactions surprise me at all and this resistance, this avoidance is absolutely what I expected – it’s exactly what happens whenever anyone with a disability has the audacity to demand being treated like a human being. This tragedy has uncovered again, brought into the stark light of day, some very uncomfortable truths about what it means to have a disability in this country. And instead of seeing that for what it is, and working toward change, there is a lot of hate out there, and anger, that some of us have the audacity to point out these truths. And beyond that, there is a sad amount of avoidance and hoping we can sweep this back under the rug.

Uncomfortable Truth 1:

The world is not always a pleasant place for people with disabilities. This is an entire segment of the population that continues to be marginalized, ignored, denied access, patronized, put away, put down. There is a deep ugliness in the heart of some people when it comes to disability. I’ve been asked why I didn’t “take care of it” (meaning Down syndrome, meaning my living, breathing, beautiful child) when I was pregnant. It is not uncommon for people with disabilities to hear “I would kill myself if I were you” or “I’d rather die than use a wheelchair.”

We hide behind our charities, our non-profits, our laws. We say that our fellow human beings are taken care of, they are loved, and included. But the harsh truth is they aren’t always, and we prove it every single day. It’s the blocks and blocks you have to go to find a curb cut. It’s having to fight to get your kid an education when the law says it should just be given to you. It’s the employer that refuses to hire someone with a disability, even though they are as qualified for the job as anyone else. It’s the continuous slashing of benefits, health coverage, and supports. It’s people thinking they have the right to tell you that you should have had an abortion, that your kid shouldn’t even be alive.

And in Mr. Saylor’s case? It manifested itself in a really horrible, irrevocable way. It’s the bystanders who refused to speak up and call for cooler heads. It’s the officers who determined that the appropriate, measured response to lack-of-movie-ticket was three sets of cuffs and down to the ground. It’s the Grand Jury who decided that despite a homicide, despite the absolute negligent behavior of three law enforcement officers, there should be absolutely zero punishment whatsoever in this case. Just another disabled guy out of this world, no longer a burden to society.

Uncomfortable Truth 2:

These prejudices exist within the disability community. I have been moved to tears by some of the things I’ve read by my fellow Down syndrome moms. People wondering out loud if maybe Ethan shouldn’t have been in the movie theater at all. People wondering out loud if maybe he hadn’t had enough “compliance training.” All the “my kid would never do that” I’ve seen, and the “I’ll never let my kid out of my sight.” We preach about independence and going to college and real work for real pay, but when we find out about a mom who sent her son to what should be one of the safest places on earth – a movie theater – we condemn her. We gather our chicks back into our nests and turn our backs on her.

Yeah, we all have our own personal beliefs about disability. We are all the people we were before receiving the diagnosis. But a little unity wouldn’t hurt here, and a little support for Ethan’s mom, the choice she made to let her child into the world, and the belief that Mr. Saylor was in fact capable of leaving the house…well, that would go a long way. How can we expect the world to welcome our children if we ourselves are so quick to judge? There should be a single message coming from the Down syndrome community: Ethan Saylor had the right to see a movie in a public place. And he had a right not to die.

Instead? Discord. Or with some, worse than discord – silence. Crickets. Our prejudices are showing. Time to deal with them.

Uncomfortable Truth 3:

Sometimes law enforcement officers do not do the right thing. Period. Full stop. And the really uncomfortable truth? There is a long history of law enforcement officers causing harm, and causing death in situations that never should have resulted in such extreme measures.

I am appalled at the readiness to believe that these three officers were 100%, absolutely, without doubt in the right – and Mr. Saylor is completely to blame for this. A man who was likely scared, confused, did not like to be touched – a man who expects law enforcement to be wearing uniforms and carrying badges – a man whose only crime was failing to buy a second movie ticket died because of the poor choices of law enforcement. There’s really no way around that. If the officers had chosen to back off, to de-escalate the situation, to take ten seconds and think “huh, all he did was not buy a ticket? Let’s wait for his caregiver to arrive to buy a ticket” would Mr. Saylor be dead today? Probably not.

It’s a horrible truth that sometimes the very people we trust to protect us do the worst thing imaginable: kill someone. And the companion truth is sometimes those in law enforcement deserve consequences for the poor choices they’ve made, just like us civilians.

Uncomfortable Truth 4:

The fix to this isn’t going to be quick or easy. There is no “feel good” solution to this. There is a lot of push right now for “additional training” as the answer. The uncomfortable truth here is the training isn’t going to change much – especially if the training is just about people with Down syndrome. Down syndrome didn’t kill Mr. Saylor – three off-duty police officers who were over zealous and didn’t take the time to stop and think did. In fact, these officers likely already had training in the two things that might have saved Mr. Saylor: de-escalation and proper restraint procedures. Their decades of combined experience should have given them at least a few opportunities to work with people with disabilities. Training does not fix the deeply rooted societal belief that Mr. Saylor never should have been at the movie theater to begin with.

There is no way to pat each other on the back, sing kumbayah, and move on. It hurts to say that, it’s hard to admit, but it’s the truth. A man is dead. No way to tie that up in a pretty bow and call it a day. And frankly (and I’m looking at you, NDSS) – it’s an insult to Mr.  Saylor’s life to think that we can.

What’s needed here is justice. The officers need to be held accountable. And then the Down syndrome community needs to hold society accountable. Challenge these ugly ideas, create a world where our children can go to the movies.

Then we can sing kumbayah.


So. What can you do? Join us in our push for justice for Ethan.

There is a petition for the Maryland Attorney General to open an independent investigation.

We are also using the power of Twitter to contact those with a bit of clout and rally them to our cause.

Please check out what I wrote up. With a Little Moxie is hosting the information. One-page fact sheet. Twitter 101. List of Twitter handles to call out in your Tweets.

28 responses to this post.

  1. Posted by Erin on April 12, 2013 at 7:05 am

    This is hands down the best post I’ve seen so far. Sharing with my local group.


  2. I agree…this is a wonderful post. I’m going to link to it in my blog and I want to tweet this line…..”Ethan Saylor had the right to see a movie in a public place. And he had a right not to die.” I am new to the Down syndrome community, my son is only 9 months old, but how my eyes have been opened. I shudder to think about the stores that I never knew about prior to my son being born because it was just a story about some disabled person. I keep asking…where is the public outrage? Why are people not upset about this? And you’ve basically answered these questions in this post. I’m going to keep blogging and tweeting about Ethan. Something has to change.


  3. Posted by Theresa on April 12, 2013 at 9:32 am

    The theater people had a pretty bad reaction too.


  4. I have read and written much about Ethan in the last month or so. This is the post that rings truest to my own feelings. I haven’t forgotten and won’t. I’ve been posting on Facebook and calling (I talked to Jon Colman of the NDSS the other day) and tweeting and begging for signatures for the petitions. We are at the tipping point. We are at the Montgomery Bus Boycott. It is time to move from the back of the bus.


  5. A post worth plagiarizing and sharing. Thank you for saying what had to be said, even though it is hard to do.


  6. Posted by Dawn Mogyoros on April 12, 2013 at 10:53 am

    Perfectly written from start to finish, I’m sharing this. I am a parent of a child with Down syndrome. Thank you so much.


  7. Thank you for your honesty and truth. You have hit the nail on the head, and I feel more of us need to stand up and do the same….


  8. Powerful post and perfectly worded.


  9. I would wonder why those bystanders did not step in and offer to pay for his ticket when they saw that the young man was in distress and calling for his Mom?


  10. Thanks for a thoughtful and articulate piece. ~BTL


  11. Posted by Patricia Saylor on April 12, 2013 at 5:53 pm

    This is Patti, Ethan’s mom…. I agree this is by far one of the best if not THE best post on the subject. Ethan was a vibrant young man with his own passions and desires. I supported his right to make choices. We helped build what we thought was a safety net of supports for him. He participated in interviewing and hiring his own support staff and he had wonderful dedicated young people working for him. He chose his recreational pursuits on weekend evenings. After all, what 26 yr old wants to hang out with their mom on Saturday night? Twenty six years ago we (the DS community) were conducting “awareness” activities. Apologetically asking others to accept our beautiful children. Parading them around to show how they were more alike than different. Well let’s face it, there are plenty of people who are fully aware of vulnerable human beings and just don’t care to accept, include or respect them. Strides have been made, ie Ethan’s wonderful group of young dedicated staff. They will go on to make the world a better place, But make no mistake about it, there will always be people who do not value people they consider to be “less than”

    It is time to demand respect, dignity and equality! If “Justice for Ethan ” furthers this cause then he will have not died in vain.

    Thank you for joining together in this movement for justice and equality for all! It is simply not enough to be “aware”.


  12. Posted by justin hatt on April 13, 2013 at 2:07 am

    the three that cuffed the downs syndrome man should be in jail for the test of there lifes


  13. It’s pretty common for people who are arrested to become distressed enough to die. I don’t think it was the fault of the officers as much as it was a natural reaction of some people to stress themselves to death under such circumstances. There doesn’t always have to be someone to blame.


    • You’re right, but that does not explain how failure to purchase a movie ticket results in a death. We trust law enforcement officers to protect us. Mr. Saylor was in no way a threat to anyone. Their job was to de-escalate, and they failed to do that. If he was reaching a point of being able to “stress himself to death” the officers should have responded with a de-escalation.

      Please see “Uncomfortable Truth #3.” Sometimes law enforcement officers make bad decisions. Period.


    • When people are stressed enough to die, it is related to the amount of stress causing a pre-existing condition to give way such as a stroke or heart attack which are the more common. Lesser common deaths are aneurysm and asthma. These pre-existing conditions can be acted upon by situational stress however – would be listed in any autopsy when present as the cause of death. I have never heard of someone dying from being “scared to death” without a pre-existing condition which even they were listed as present in Mr Saylor – were not included as the cause of death. If Mr Dial is refering to a death resulting from simple excitement without a pre-existing complication factoring into the cause of death – Id like to see it. I have never seen any example to substantiate his claim.


    • Mr. Dial, you are posting a combination of truth and nonsense. I agree with you that there doesn’t always have to be someone to blame. But in this case there are three “someones” who caused Mr. Saylor to die when there was no reason for his death.
      The nonsense part is claiming it is “pretty common” for people to “stress themselves to death.” Ethan Saylor didn’t have a heart attack, he was smothered such that he couldn’t breathe. Big difference.


  14. Reblogged this on Through the Looking Glass and commented:
    Very honest, very poignant and I had to reblog it. As Robert’s mom comments on the blog, awareness isn’t enough.


  15. […] you read this post, Uncomfortable Truths? It’s the best one out there right now. Definitely the best one that captures what this is […]


  16. Posted by Jan Steich on April 16, 2013 at 6:56 pm

    Whatever I can do to help,wether its to educate people,donate time. Ill sign the petion if I can find a way to sign it from Fla. I’ve worked with physically and mentally challenged for over 5yrs. I had planned on working this job til I retired. When I was 43 I got injured on the job. My supervisor didn’t want to put the van in the shop for half a day,it was leaking hydrolic fluid for 3 weeks when it slammed me and a client to the ground.in 2005 I had my first back surgery,I had my second back surgery in 2008. Ill never work again and in 4 and a half yrs ill lose my workmans comp pay. The r responsible for my medical but I won’t get anymore pay. But I want to help. This story has broken my heart. I can’t believe those 3 officers got away with killing this young man. I have to help in some way plz!!!!!!


  17. Well done and many many thanks for a blog well written!! *bow*
    I’ve been involved in care giving for many years however not so much to down syndrom. I tend to tackle situations one on one as opposed to blogging when confronted with bias or other wrongs and misunderstandings . . .
    The experience that the Saylor family has been forced to endure brought tears to my cheeks the first day I heard . . and each day after as I feel compelled to straighten misguided assumptions and recall facts, . . . For me – it is a grieving, a relating to the events so transparently, a frustration in the “untouchable” process that brought us here today, and a passion for inclusion, that I feel in you as I read, and find simularity in, by common awareness. And that – is not common for me to feel in someones blog.
    Thank you.
    My sincere and heartfelt sympathy for the Saylor family.
    We will endure, and we, are no longer alone.


  18. Posted by maria on May 11, 2013 at 12:37 pm

    Do you know what a scam the grand jury was? At a grand jury, the District Attorney is supposed to represent the people and gather all available evidence against the defendants (the officers). This corrupt DA, Charlie Smith, only accepted the investigator and the 3 officers as witnesses. He DID NOT accept ANY of the movie theater witnesses OR Ethan’s assistant or his mother as ones to testify in this case. That’s why these officers/criminals got off scott free. I wouldn’t be against vigilantism in this case……just a thought….


  19. […] about what happened to him.  Help dispel myths about what happened.  Share, talk, share, talk.  This is a very comprehensive post.  I’ve written about Ethan here and here.  Read here, […]


  20. […] Post:  Uncomfortable Truths in Garden of My Heart […]


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