#JusticeForEthan, Birthday Parties, and Inclusion

If you have recently followed the blog, you might not know about Ethan Saylor.  He was a man with Down syndrome who went to the movies with a caregiver, had a misunderstanding over wanting to stay in the theater without a second ticket, and ended up dead.  He died of asphyxiation; his throat was crushed when three off-duty police men tried to inappropriately remove Saylor from the theater instead of allowing the caregiver to diffuse the situation.

During that time, many people in and out of the disability community were calling for more police training, believing that such training would have altered the course of events for Saylor.  I felt deeply ambivalent about the discussions on police training after the Ethan Saylor’s homicide.  In fact, I saw some very real examples of how the concept of training turn into something very wrong.

Last week, many in the Down syndrome community became aware of a children’s gym called Surgent’s Elite School of Gymnastics in New Jersey that refused to allow a little boy with Down syndrome to have his fourth birthday party at their facility.  When the boy’s mother went to arrange her son’s birthday, she discovered that the gym had a blanket “no special needs” policy.

The New Jersey play gym defended their “no special needs” policy because they claimed they did not have enough training.

Cases like the little boy in New Jersey are downwind casualties of the very flawed logic of training that I saw after Saylor’s death.  I won’t go into the myriad reasons that I didn’t think discussing training was appropriate in the immediate aftermath of Saylor’s death, but will say generally that I think it siphoned off valuable energy that should have focused on accountability and discipline.  Above all, I worried that the myopic focus on training would bolster the false logic that one needs special training or expertise to interact with a person with a disability.

I think that supporting disability training in all situations, for all reasons, is very dangerous.  It subtly creates a believable barrier to understanding and inclusion.  If a four-year-old boy can’t even have a birthday party without some kind of specialized staff present, then how could that boy be included in a typical classroom?  Play sports?  Be in public?  Many can easily make this troubling leap in logic.

It is clear that the manager of the gym is not out to be a terrible person.  He’s since offered to host the party, which is a step in the right direction.  Yet I can’t get behind his insistence on hiring specialized staff to do it.  I cannot, for the life of me, imagine what kind of specialized staff would be needed for this situation.  I’m sure many are thinking, oh, but maybe the boy wasn’t physically able to do what his similarly aged peers could do.  The mother reported that her son had no medical restrictions. I’d hazard a guess that the boy liked and could do the kinds of activities that a birthday party at a gym would entail, or else his mother would not be pursuing the idea at all. I’ve been to plenty of kid’s gyms. Children inevitably have different ability levels, that is simply natural variation, special needs or not.  Any decent staff knows how to adjust the activities so that all the children present are comfortable.  Don’t mistake me, I can imagine various, specific circumstances in which a child would need some extra support in order to participate in a birthday party at a play gym.  But frankly, I can imagine these situations in and out of the special needs realm.

The message, in the meantime, seems clear.  Children with special needs cannot be included simply as a matter of course.  In fact, it may be safer to exclude them altogether.  As an aside, this safety logic was also very prevalent in the aftermath of Saylor’s death; many blamed Saylor’s mother for placing him in the supposedly dangerous situation of being out in public without her presence.

Is it such a big surprise, when some in our own disability community accept that police brutality against their own can be solely addressed with… training?  This over-reliance on training sets disability apart in a way that I do not see in any other marginalized community.  Imagine the words, “If only he had been trained to deal with black people,” were uttered after a race-related officer shooting.  Yet, replace “black people” with “disabled people” and this sort of logic occurs every day in our schools, police departments, government, and every day conversations without enough critical examination.

It isn’t that I don’t think awareness training can be valuable.  Sensitivity training for all sorts of groups, for instance, is a good thing.  I don’t feel differently about disability training.  Mainstream America could stand to learn what disability actually is and isn’t, and that it is a varied and diverse part of human existence.  It is an unfortunate fact that many people simply are not exposed to positive and realistic depictions of disability and if training can help bridge that gap, wonderful.

Let’s just be careful.  Training can only be a small part of that solution.  It is hard to talk about inclusion for the sake of inclusion, accountability and discrimination because they force us to confront basic ideas of good and bad, right and wrong.  These conversations are confusing sometimes and can get uncomfortable, but ounce for ounce, the amount of positive potential is much greater there than in simply slapping a training/expertise label onto the problem and walking away.

If I could get in a room with the officers who killed Saylor, I would ask them why they felt that Saylor was so different that the de-escalation techniques they surely already knew were not applicable.  I would tell them that if they had dug into the basic training they already had, that Saylor could still be alive today.  I’d tell them to approach every person, disability or not, as a unique and precious life.

If I could get in a room with the manager of Surgent’s Elite School of Gymnastics, I would tell him to reconsider his belief that he needs special training to run an inclusive gym.  I’d tell him dig into his basic instincts for interacting with children, rather than adopting a blanket policy of exclusion out of fear.  I’d tell him to approach every child, special needs or not, as a unique and precious life deserving of inclusion.

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Right Versus Easy: #JusticeForEthan

I know I have written about Robert Ethan Saylor’s homicide many, many times.  I’ve written about Ds awareness.  I’ve written about training.  I’ve written about action.  Feels like I’ve hashed and rehashed my feelings on what happened.  Yet.  Somethin’ is a botherin’ me.

Read the rest of this entry »


Why I can’t let it go: #JusticeForEthan

I might keep writing about him for quite some time. If this bugs you, well, you might have to get over it. (I mean this in the kindest way, of course.) I’ve always voted. I try to make calls, send emails, sign petitions for just causes, but I’ve never been very vocal about it. Truth be told, I am uncomfortable with being so vocal, it has never been my thing. However, I’ve realized that Saylor’s story is part of a greater tragedy that divides and devalues our fellow human beings.

LGBT, straight, black, white, Ds, autism, wheelchair, man, woman, young and old, it really shouldn’t matter; you shouldn’t die over a movie ticket. I realize that not everyone sees disability rights as on par with other civil rights battles being fought today. Maybe that is why I feel the need to keep writing about this. Most people I know quickly agree that there is no basis for treating an individual differently based on religion, gender, race, or sexual orientation. But somehow, talk about disability, and it all gets murky. I’m not saying those other fights so aren’t very important, they are. At least there is a fight. Big. Fights. I can’t say quite as much for what has happened to Robert Ethan Saylor.

I’d love it if you read this blog post. She is a friend of mine, and has a beautiful little girl with Ds. She explains it all more succinctly than I ever have. She also outlines some actions to take.

Maybe until now you’ve felt like Saylor was only important to me because I have a kid with Down syndrome. Or maybe you just thanked your lucky stars that you don’t have a kid who will ever look like him, and won’t get mistreated the way he did. Maybe you don’t think he was mistreated, in which case I beg to differ. I also beg to differ that just because your kid doesn’t have Down syndrome, that you will not be affected by Saylor’s death.

His death is important. It speaks to our culture’s inability to see those with disability as deserving of basic equal treatment. And when you live in a world that cannot acknowledge a person’s basic human value, you live in a dangerous place. I have discovered I live in a society in which it is legal to pay someone with a disability less than minimum wage, simply because they are disabled. It is legal to forcibly sterilize those with disabilities in 15 states. Women with disabilities are sexually abused at much higher rates than their typical counterparts. Men with disabilities are beaten. Married adults are told they cannot live together.

The thing is, I didn’t know about this, until I was forced into a club that I never asked to join. I’m ok with being in this club now. In fact, I’m grateful, and I wouldn’t even change it. I love the club. But that means I have finally come to understand that this club is a club that 1 in 3 Americans will join at some point in their lives. One day, you may be Robert Ethan Saylor. Your child may be Robert Ethan Saylor.