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Gail Zahtz Talks to Barbara Kornblau about #JusticeForEthan and Broader Disability Issues

9/8/2013

3 Comments

 
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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

Sensory processing

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.

Police Culture

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.

"Lived Experiences"

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!   
3 Comments
Gail Zahtz link
9/9/2013 02:31:47 pm

Thank you so much for this post! You are absolutely welcome at every single interview from this week onwards! You did such an incredible (and amazingly fast) job at summarizing so many of the key issues we discussed.

Sensory Processing: I have been advocating for some time for sensory rooms, sensory integration, DIY sensory kits that parents/caregivers can take with them at any time. Interestingly, the strongest readership has come from families in the Autism community and then of course Occupational Therapists who are all trained in the use of sensory integration in working with many needs. The evidence supports it from pain management to Alzheimer's to ADHD, and is recognized as an acceptable accomodation in the classroom for anyone who has an IEP. I am so happy to be meeting the DS community through this project, as I had no idea until today that the DS caregivers were not informed that sensory integration has the same excellent evidence based support for helping people with DS as it does with Autism. I have several articles up already on sensory on the new DemandDesign, I will post one specific from this, and keep posting.

Safety Sign: I LOVE this idea that we came up with during the interview (one of many reasons I love these long radio interviews is that we do more than talk.. we start solving.) How simple- we can't teach our children and everyone in the world when to trust or not, what is safe or not in any given situation- but to have a universal sign that says "I have a disability" and slows down a growing situation- it's a beautiful, wonderful idea and I hope we run with it!

Lived Experiences- Carpool Health (the family of communities that Demand Design is one of) has been commited to the power of the narrative from day one. I offered privately, and am offering publicly now that anyone may use DemandDesign.net for free to start telling your stories of what it's like to live with a disability and/or as a caregiver. As the talk show grows from audio to also include video, and have its own online home, I volunteer our resources to take everyone's stories and combine them (like was done for the Shoah project) and start using everyone's own narratives of your lived experience to help in training and teaching everyone to reduce the stigmas of disabilities all over.

Much more to say... but also much more to come! See everyone all week during the #CPHC chat on Tuesday at 1, and a week of audio interviews on BlogTalkRadio...this is only the beginning.

Thank you to everyone in the community for opening your arms to allowing me the privilege of bringing your story to more people!

Gail

Reply
Howard Roll
9/21/2013 08:55:56 am

Hmmm. I gain a lot from reading your blog, but feel the need to respond to the idea about a new "Safety" sign. Police brutality committed against people with disabilities - or anyone - is awful. On that we can all agree. But the idea of using a "Safety" or "I have a Disability" sign would seem to have major potential downsides that need to be thoroughly vetted before launch.
Just yesterday I read Jisun's latest post on her Kimchi Latkes blog, reacting to the idea of a universal "I have a disability" sign and the truly horrid idea of a bright yellow "I have autism" t-shirt. I encourage you to read her post at http://kimchilatkes.com/2013/09/20/nightmare-come-true-police-training-autism-and-down-syndrome/ where she summarizes major concerns about these ideas.

The broader disabilities community has been working for decades to BOOST inclusion. We need to be VERY wary of ideas like these that would only promote EXCLUSION of people with disabilities from their communities.

But that's almost a side issue compared to what ideas like these ASS-U-ME about people with disabilities. A universal "I have a disability" sign doesn't say ANYTHING about the individual, the circumstances, the reason for using the sign. Sure, police might pause and slow down a moment. But that would be only BEFORE the first gang-banger used the new sign to produce just enough hesitation in an officer's response to be able to gun down the officer. From that point on the sign could, potentially, have an effect pretty much the polar opposite of its original intent.

And then let's think about Ethan. Those three deputy goons knew he had a disability. Would they have behaved any differently if he had used a global "I have a disability" sign? Or if he'd been wearing some awful Down syndrome t-shirt? Doubtful.

Please don't take this to be too negative. I haven't listened to the radio show yet but will, and imagine I'll have a lot of complimentary thoughts after that. Keep up the good work, Gail Zahtz and Walkersville Mom.

- John R
(Brain-injured DS parent. A couple years ago a doc told me I had aspergers. Then the DSM update was released. Now I'm just weird.)

Reply
Stephanie
9/21/2013 09:07:01 am

Hi Howard! Thanks for the thoughtful comment. I loved Jisun's piece and agree she has lots of valuable insight into this topic. I understand and share your concerns about further excluding people for any reason.

I will say that I just posted another piece on this topic that I hope sheds some light on where I'm coming at this from. "This isn't good - What's next?"

Thanks again for commenting! I totally agree, we need to consider ALL aspects of important topics like this!

Reply



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