Down syndrome from a father's perspective.

The death of Robert Ethan Saylor is terrifying for the Down syndrome community.

person with head in sand about death of ethan saylor

The death of Ethan Saylor is a tragedy that has shaken an entire community. Not a community in the sense of a town or location, but those of us that have been drafted into the Down syndrome community. One of the more troubling aspects of this tragedy is that the only place I hear about it is within the community itself and not from the general population. Why is that?

The ostrich can only keep his head in the sand for so long.

I have known about the death of Ethan Saylor for some time yet have not addressed the issue despite its direct connection to Down syndrome. I am not exactly sure why I have avoided this topic but sometimes motivation can come when you least expect it. For me it came in the form of the Liebster Award nomination. As I stated in my last post (Treyton’s Posse has been nominated for a Liebster Award!) part of the award process is answering eleven questions created by your nominator.

The last question that was posed by Little Bird’s Dad was about the Ethan Saylor tragedy. Despite the plan I had already laid out for completing the Liebster process I am going to begin with this last question because it simply feels like something I need to talk about. It is not that I believe I am going to spur some big response by what I write, it is more about the butterfly effect – small actions can multiply is ways we would never expect.

Liebster question #11.

What do you think about the death of Robert Ethan Saylor?

It is a simple question that does not attempt to direct the reader toward any particular conclusion. The openness of the question allows the reader the option to head in any direction when answering. But it is this freedom in answering that seems to be causing me some issue. If the question was more specific like, “Do you think the security guards used excessive force” or “Do you think there should be an independent investigation,” I could focus on the facts that surround those specific parts of the tragedy but that is not what the question does.

The way I read the question is that it is bigger than any specific aspect of the case. It is a big picture type question – one that forces me to consider the future of my own son as he grows and gains independence. In order to answer this question I really need to think about Treyton as a 20-something young man enjoying a night out at the movies.

A tragic night.

One of the things that concerns me so much about this story is that the general public (those that are not entrenched in the day-to-day realities of Down syndrome) are not familiar with what happened to Robert Ethan Saylor. In fact, I have already heard a lot more about the Rutgers University basketball coach that threw balls at his players than I did about the death of Ethan Saylor. So first I am going to do a quick summary.

On January 12 of this year 26 year-old Ethan Saylor (he has Down syndrome) went to a Maryland movie theater to see the movie Zero Dark Thirty; Ethan was accompanied by a caregiver. After the movie the caregiver went to get the car at which point Ethan went back in the theater because he wanted to watch the movie again. The theater manager asked Ethan to leave but he would not. The manager requested the help of three mall security guards (all three were off-duty county sheriff deputies).

According to reports Ethan, usually a happy individual, became agitated when the guards approached and one of them touched him. When the security guards saw Ethan’s response the other two joined the first and when they were done he was lying on his stomach with his hands cuffed behind him. It was there on the ground that Ethan died from asphyxiation.

So, what do I think?

Treyton at the school playgroundMy opinion is that this is one of the most senseless and avoidable deaths I have ever heard of. Right now there is a family in Maryland trying to come to terms with the fact that their baby boy (something I still get called even though I am 40) was tragically taken from them. And, the fact that my own son is challenged by the same disability is scary.

What really bothers me is that the physical characteristics of Down syndrome, “the look” people use to create a stereotype about individuals with Trisomy 21 did not help Ethan. The irony is thick. People with Down syndrome go through life with others making judgments and assumptions about them because of their physical characteristics. It was obvious that Ethan had a disability. This is one time when “the look” should have helped Ethan but it didn’t.

There appears to be two groups forming within the Down syndrome community in regard to this tragedy. One side says that this was likely the result of a lack of training. This group suggests that police officers need more training on how to deal with individuals with Down syndrome and other cognitive disabilities. I think training is good and certainly won’t hurt. Instructing officers about the common physical challenges that people with Down syndrome suffer from would be a start. This would include things like hearing issues, heart conditions, and breathing troubles to name a few.

The other group that is forming seems to be saying that it Ethan’s death had nothing to do with a lack of training. There are some that seem to think the guards treated Ethan more poorly because of his disability. I think that line of thinking is a stretch, a result of the strong emotions we all feel about this. However, I also don’t think it was a lack of training that caused this. I think it was a lack of caring. Like I have already said, the average person off the street could see that Ethan had Down syndrome, and, even if that person had never been around a person with the disability it would seem to me to be common sense that such a person may respond differently than those of us with one less chromosome.

Now what.

The impact of the extra-chromosome is different for every person which is why you hear some people talk about low or high-functioning people with Down syndrome. I think Treyton is smart and has a bright future ahead of him but in reality I don’t know what he is going to be like when he is in his twenties. As a result I need to consider the fact that someday my boy could be sitting where Ethan was sitting. Because of that I need to do something.

But what can I do?

I really don’t have a great answer. I am going to continue to try to raise awareness about Down syndrome. I am going to do what I can to support others that do have an idea of what they can do. Little Bird’s Dad has devoted a significant amount of energy to “Justice for Ethan Saylor.” The International Down Syndrome Coalition is also working to make sure Ethan gets justice. I am going to try to support these efforts and ask that you do as well.

Rob Arnold has been married to his high school sweetheart for almost 19 years. Together they have three daughters and one son. He earned his bachelor's degree in General Business from Grand Valley State University as well as an MBA in Strategic Management from Davenport University. He enjoys reading, hunting, scuba diving, and spending time with his family.
  1. Pingback: Justice for Ethan Saylor | Little Bird's Dad

  2. Little Bird's Dad

    Rob, thanks so much for your thoughts and calm, steady voice.

    I think you make a great point about “The Look”. You made a difference, just writing about it, and thank you for doing that.

    Rock On!
    Little Birds Dad

  3. jisun

    You know, the face idea… Brings up a lot of stuff for me. The problem to me about wearing your extra chromosome on your face is that I think it can either “help” or “hurt” you, but either way, you may be judged by your Ds first, everything else next. I’m not saying those off duty cops were maliciously treating Ethan the way they did because of his Ds. I am saying that somewhere, in their unconscious, they allowed themselves to dehumanize him based on his face. To me, that is where the lack of caring arises. Heck, maybe those guys treated everyone like that, and it wasn’t about the Ds after all, but that to me is all the more reason that they should have lost their jobs. I doubt that scenario though.

    I guess I just don’t want anyone to judge my kid based on their face at all. Whether it is the color of his skin, the number of chromosomes he has, or anything else about how God chose to create my son. Maybe that is wanting too much though, to live in a society of equals? That is the biggest tragedy.

    • Rob Arnold

      Well said. If there is one thing my wife and I talk about more than anything else (in regard to Down syndrome) it is that we wish people would get to know our son before they assume they know him. Trust me, he is all Arnold! We are a unique breed and destined to break out of any box people try to put us in.

  4. jisun

    Exaclty. **high five** :)

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  8. Andrew