(Originally posted on Walkersvillemom 9/9/2013)
So many good ideas and topics talked about tonight on Radio Blog with Gail Zahtz and Barbara Kornblau. I was taking notes and identifying with so many things that were discussed. Here’s a review of some of the things that struck a chord with me.
- Sensory processing
- Special Olympics Programs
- Police Culture
- “Lived Experiences”
- Quality of life
It never occurred to me that Josh’s dislike of thunder storms could be due to a sensory processing issue. He also reacts badly to loud voices. The participants in tonight’s radio blog talked about how sensory issues may have affected they way Ethan processed the interaction with “security guards.” Imagine if loud voices actually caused you physical pain. Imagine that pain interfered with how you process incoming information and your ability to respond. Sensory research has apparently been around for decades, yet was never discussed with me in Josh’s MANY therapy sessions. It could be because treatments/therapies were viewed as expensive and inaccessible for people with modest incomes. It could be because the link between sensory therapy and Down syndrome wasn’t widely known. It could be because the doctors we used weren’t trained. (Which brings me to my next topic.)
Special Olympics Programs
Did you know that 1 in 50 doctors are trained to serve patients with ID/DD? I knew from experience that some of the doctors we used didn’t understand Down syndrome. That really hit home for me when Josh was classified as hearing impaired by school screenings. Turns out, the headphones used in those screenings can impact the small ear canals that people with Down syndrome sometimes have, causing a compromised testing result. With different earpieces, Josh’s hearing was in the normal range. I didn’t realize that people were being actually turned away from doctors and dentists or unable to receive basic health care because of a lack of trained professionals.
Special Olympics works with doctors to help rectify this problem in a project called Healthy Athletes. They also have a program called Project Unify that is teaching kids to create inclusive environments. “Spread the Word to End the Word” came from that project. It’s a much larger organization than I realized. Special Olympics is doing some great work that goes way beyond the sporting “competitions” that people talk about.
A lot has been said lately about the culture of law enforcement and how that impacted the altercation with Ethan. During the radio blog tonight, I found myself questioning, again, whether training will have an impact in places where the culture is dictated by harsh thinking and “react first” instructions. It is a custom within minority cultures to discuss how to interact with police with kids, especially male children. I was always taught that police were there to “serve and protect.” It’s been obvious to me as I read the comments on the petition and elsewhere that this is not the norm everywhere or in every culture. It may be time that we, as parents of children who have a disability, begin to adopt a different “talk” to have with our kids. A fabulous suggestion was raised tonight about the use of a “safety sign.” Many kids with Down syndrome are taught to use basic sign language when they are young to facilitate speech. A simple sign that could be taught to people who have communication problems either everyday, or in stressful situations, could be a lifesaver.
An expectation of compliance to police is another issue. Do we train health care workers to be assertive when dealing with situations involving police? Ethan’s aide was ignored and kept away from him during his ordeal. While we’re looking at training the first responders, maybe we should also train the aides to work with the police. There were also bystanders in the theater that night. According to the report, only one of them questioned the need for police involvement. Were the rest impacted by a fear of being arrested? I’m guessing we’ll never know about that night, but we can work to change the perception of the public and the response of law enforcement.
This tragedy brings up multiple areas where we can work to change attitudes. Some issues can be impacted by training. In others, we can use simple tools to bring about better outcomes. The main problem underlying all of these issues is attitudes toward disabilities. We have experienced change just in the time that Josh has been around. But there is still so much work to be done. Gail and Barbara talked about the power of the “lived experience” in the disability narrative. That’s a complicated way of saying that the more we tell our stories, the more people are affected; and the more change in attitudes occur. There is still a lot of stigma associated with disability, even though most people experience it on some level at some point during their lives. Our voices can make a difference.
Quality of Life
The bottom line for all people is that we want to be able to do what we want, when we want to do it. Of course there are rules that apply to all, but there shouldn’t be special rules or limitations placed on people just because they have a disability. Ethan wanted to be able to watch a movie with a friend. Josh wants to dress in a way that makes him feel good about himself. Jenny Hatch wanted to live and work where she felt supported and included. Those things may seem simple to most people, but to people who have ID/DD, they can be a struggle at best and impossible at worst. As parents, we want to make sure they have opportunities that exist for other people without question. When something like this occurs, it makes us wonder if we’re doing the right thing. It also makes us wonder if what we are doing is enough.
Listen for Yourself
Thanks so much to Gail Zahtz and Barbara Kornblau for giving me lots to think about! Can’t wait for the rest of Gail’s coverage of #JusticeForEthan this week!
If you missed it – you really should give it a listen!