Before I even start talking about the subject of this piece, I want to make it clear that I am biased and I know it. So critics – you can save your strength. I am, emotional, a mother, and personally invested in this story.
(That’s my son Joshua with his arm around Ethan)
So, with all that front and center in my mind, I realize that it’s difficult, if not impossible for me to write about what happened to Ethan in any unbiased way. In other words, if you’re looking for neutral reporting, you’ll have to go elsewhere.
The Saylor family, backed by lots of supporters including myself, have been working diligently since Ethan’s death to make sure that real change happens, to make sure that Ethan is not forgotten, and to make life better for people who have disabilities.
Today was a huge day in that fight. Ethan’s mother, Patti, testified in front of a Senate committee about what happened. Just the title of the hearing is awe inspiring:
The United States Senate Committee on the Judiciary
Subcommittee on the Constitution, Civil Rights and Human Rights
Law Enforcement Responses to Disabled Americans: Promising Approaches for Protecting Public Safety
That’s a lot of hefty words to describe some pretty influential people on Capitol Hill.
So from the outside looking in, I was left with three major impressions – all emotionally charged.
1) There really is truth to that saying about how “You never know what you’re capable of until you’re tested.” I can get flummoxed by every day occurrences that drive me into seclusion and make me want to avoid people altogether for a while. Patti, on the other hand, has faced an unimaginable tragedy and there she is! Not only is she making public appearances to fight for what she believes in, she’s doing it in a MAJOR way and always looks so together. It was actually surreal for me to watch her. Not to mention the fact that one of the Senators in attendance was Al Franken. No, I’m not a big political follower so when I see him I think… comedian, celebrity, not politician. What’s more, there are all these people tweeting, posting, writing and encouraging her from all over the country and the world. I was almost like watching a movie. I kept thinking how did we get here?
If you had told those two moms in that picture that one day, 25 years later, this scene would be unfolding, we wouldn’t have believed it. Advocacy is one thing, this picture was taken in the early days of the support group that Patti founded. But today was something else.
2) The people involved did seem to have some ideas to address the problem. Examples of current programs were given that, if funding and directives were given, could be replicated. These programs could make a real difference in the lives of people with disabilities. Things like Crisis Intervention Training, public outreach from law enforcement to get to know children in the community on the Autism spectrum. and separate courts for people who should not be automatically funneled into the criminal justice system in a crisis all sound promising. There were of course other stories of what isn’t working.
3) In his opening statement Senator Durbin talked about how deinstitutionalization created the crisis we are now facing. By doing away with existing inpatient supports, the idea was that people would be able to use outpatient supports within the community. He went on to admit that there has “never been adequate funding for services in the community” and “recent Draconian cuts in their meger budgets” have reduced services even more. The problem – if you can call it that – is that people ARE IN our communities. ALL kinds of people. The communities just don’t have the knowledge, resources, or attitudes necessary for everyone, regardless of ability, to be fully included.
One thing that really concerned me was that while Senator Durbin invited Patti to speak, and even talked about how the topic garnered so much interest that they had to get a bigger room than originally planned, and he mentioned that people were showing their support on Twitter and Facebook by using the hashtag #EthansHearing – most of the discussion was about mental illness.
Ethan did NOT have a mental illness.
There is a HUGE difference between an intellectual disability and a severe mental illness or psychotic episode like most of the panelist talked about. I’m sorry, but I feel that any training or solutions offered would have to be different for the two populations and until we can get past this one very large misconception, we can’t make any real progress.
There is one thing that the two populations have in common – the level of stigma associated with them. Patti had a great quotable moment at the end when she was responding to a question from Senator Cruz. First, Senator Durbin asked her if the three Deputies had received training prior to January 12th.
The three officers were sheriff county deputies and working as security guards for the mall and they had had a short training in mental illness. But to our knowledge they had no training in interacting with someone with an intellectual disability or a developmental disability such as Down syndrome. We’re not aware of any training that they had.
Senator Durbin responded by saying that it was an “important distinction, one which I had not thought about and should and I’m glad you brought that up.”
When Senator Cruz asked her what she thought law enforcement can and should do to prevent future tragedies she had this to say:
I’ve thought of that a lot and I think two things. I think first of all we need to build the capacity in the communities for a relationship between law enforcement and people with intellectual and developmental disabilities. You know, if we have a relationship we’re less likely to hurt each other. And, there would be a greater understanding that a person with Down syndrome that may be refusing to get up out of their seat is really not questioning the officer’s authority. Two different issues. So I think we need to look at different activities to provide capacity to build relationships. Second, obviously law enforcement needs to have training but with that training it needs to be dispelling some myths and assumptions. Because there was an assumption that my son might be violent or harmful. It didn’t exist. That wasn’t the issue. So getting rid of some assumptions and stereotypes along with the training like [Sgt.] Paul talked about.
Unfortunately, what seems to be left out of the many reports on today’s activities is that first part about relationships…
I’m just so proud (and sure Ethan is too) of how eloquently Patti took a huge #StandForEthan , and all people with disabilities today!
For more reports on today’s hearing and hear Patti in her own words check out these links:
Walkersvillemom 
I share your pride in Patti’s efforts!
There is very little understanding about mental illness and intellectual disability. In fact, people are reluctant to speak or get involved in any way because of the stigma associated.
We must remove the stigma associated with mental health issues.
There is no stigma associated with diabetes, heart problems, etc. Why should there be a stigma associated with mental illness and intellectual disability?
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You’re so right! Thank you!
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