at the moment between inclusion and erasure

Japan massacre

You know that feeling you get when you realize you’re among like-minded souls who really, really get it, who understand what should be so evident and obvious to everyone else?

It’s an amazing feeling, isn’t it?  Understanding and acceptance wrapped up in group hugs and warm fuzzies.

It almost doesn’t matter what the it happens to be — and no, for once I’m not talking politics.   (Well, not really.)

On Wednesday, I spent some time at a national conference being held here in Pittsburgh with people who are passionate about making cultural organizations more accessible to people with disabilities. At this conference, guide dogs, wheelchairs, and assistive technology were the norm as attendees navigated the hotel’s conference rooms.

I was at the conference for work-related reasons, but it didn’t really feel like work. As a parent of a teenager with autism, I couldn’t help but remember The Boy’s early years — the black hole years, as I refer to them. The days when I couldn’t even take my toddler twins to storytime at the library because while The Girl would sit quietly, rapt and enthralled, The Boy would be a constant blur of motion, running for the door, making distracting noises.  The idea of going to a museum or a movie or a musical was absurd; hell, we could barely go to a park five minutes away without half a day’s preparations — and usually the exhaustion of chasing, chasing, chasing after The Boy or dealing with the stares or the inevitable meltdown became too much.

I realize now how much we truly missed out on, and it makes me angry and sad. Opportunities and experiences that are childhood mainstays were forever lost to us because there weren’t accommodations to make such outings easier or meaningful ones for our family — and especially, our boy.

Things have changed a lot in the 12 years since those dark days — in our family and, as I realized yesterday, at cultural organizations across the United States. (And I mean from all states; one session seemed like a roll call of delegates with people representing states from Montana to Massachusetts and everywhere in between.)  There’s exciting programming happening — and Pittsburgh is certainly taking its place among them with a growing number of sensory-friendly performances and accommodations at the ballet and symphony and festivals.

This post could end right here if I didn’t happen to check my phone during a break between conference sessions.

While daring to feel that things were improving, to hope for a day in my lifetime or my children’s lifetimes when people with disabilities are fully included and (dare I dream?) accepted in our society and (dare I wish?) not shot when others misunderstand the reasons behind their behaviors — my full heart suddenly felt punctured, like a water balloon.

There, on the conference floor amidst the guide dogs and the wheelchairs and the advocates and the people championing the needs of people like my kid, there I stood reading my friend Elizabeth Aquino’s post “Erasure” which was prompted by  Emily Willingham’s Forbes article “This Is What Disability Erasure Looks Like.”

I read both posts, which are vehement responses to the July 26 massacre in Japan that killed 19 people and left an additional 26 injured at a residential care facility for people with disabilities. A deliberate slaughter, this attack was, and one that was forewarned in a letter by the perpetrator in chilling detail.

“I envision a world where a person with multiple disabilities can be euthanized, with an agreement from the guardians, when it is difficult for the person to carry out household and social activities,” the letter said.

[His] letter said he could “wipe out a total of 470 disabled individuals” by targeting two facilities for disabled people during the night shift, “when staffing is low”.

“The act will be carried out speedily, and definitely without harming the staff. After wiping out the 260 people in two facilities, I will turn myself in.”

As Emily’s article for Forbes states, this heinous act came on July 26, exactly 26 years to the day that the Americans With Disabilities Act was signed in 1990.

Which was the focus of the conference I was at, where we were talking about accessibility and inclusion.

I felt, at that very moment, stuck between two opposite forces: One that embraces and welcomes people with disabilities, including them in programs that were once inaccessible, and the other hell bent on erasing people with disabilities from the face of the earth.  

The danger is becoming complacent about stories like the massacre in Japan, of turning away or not reading because “it’s too much.”  Make no mistake: this massacre may have happened in Japan but there’s every reason to believe that this could have — and certainly has the potential — to happen here in the United States.  As Emily wrote, one only needs to look at the incidents that have already occurred.

  • An autistic man sitting on the ground, playing with a toy truck, and being the real target of the bullets that found their way to the black man trying to protect him.
  • Presidential nominees who mock disabled people and the people who defend the mockery.
  • A society that thinks any behavior that’s not “normal“ deserves to be publicly jeered.
  • Widespread abuse of and violence against disabled people, around the world.

We cannot and must not be complacent about this.  We owe it to all people with disabilities — the ones who came before and the ones who will come afterwards — to include them, to celebrate them, to elevate their stories and their lives against the evil that would silence their lives.

It is the very least we can do in remembrance of 19 people erased from this world.

Please consider taking a few moments to read in its entirety Emily Willingham’s 7/27/2016 article in Forbes (“This Is What Disability Erasure Looks Like”) and Elizabeth Aquino’s blog post “Erasure.”  Also worth the read is Ellen Seidman of Love That Max: “The massacre of people with disability and what parents can do.”

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