November 27, 2016

By Loreta Boskovic, Information Specialist

The other night, I went out to see a concert at a local punk rock venue which is known for its small stage and loud sound system. As people crowded the hall before the final band, I could see a group of people craning their necks to scope out an open spot right next to the stage, only to discover that someone who relied on a wheelchair was sitting there. The refreshing thing was, no one made a big deal about it – the spot wasn’t free, so they moved on. The fact that the person was in a wheelchair seemed to attract no extra attention, no stupid comments, no resentment at all. I found I’d been holding my breath, waiting to call someone out for saying something offensive… Mama Bear, much?

I credit my reaction to the changing state of disability visibility. So often our kids are the only people we see around us who experience disability; they are a little island in a sea of “normal people” or floating in an pool of “typical peers.” They may stick out because of a physical feature, or the way they behave. And the pressure can be unbearable. For example, my autistic 15-year old relies on a letterboard to communicate. More than once, he has written that he wished he could control his body’s “stims” when he’s out in public just so people would stop staring at him. He knows he’s different – he wouldn’t change a thing about being autistic (and neither would I!) – but a lot of the time, he would love to blend into the rhythm of the store, community center, or concert like so many other people do.

My family goes about its daily life in our community, knowing that we look a little different, and that makes us more visible. Thanks to a growing awareness about diversity and equity, I consider that reality our small contribution to changing what people think of as “normal” and adding our unique beat to the rhythm of life around us.

Disability visibility is growing; but if I had to compare it to a stage, I’d say we made it out of grade school (thanks to the IDEA, ADA, and other key legislative milestones that raised us up), and now we’re in that awkward, gawky middle school phase, trying to get it right but often falling way short. For example, my personal pet peeve is new stories about people experiencing disability doing things that we take for granted. Why should it be news that two teens with cerebral palsy want to go to prom? Likewise, we’re still seeing press releases announcing that companies like Target are featuring children experiencing disability in its TV commercials, as if we should give them a pat on the back for acknowledging that our kids exist. And Hollywood has some work to do, as it rarely features real people experiencing disability, and so often, their portrayals are inaccurate or romanticized.

Personally, I find I appreciate real, honest, human portrayals of people experiencing disability, but especially when they come from self-advocates. Take cartoonist John Callahan, who until his death could be seen roaming the streets of downtown Portland in his wheelchair. His often-controversial approach to discussing disability was personal and political: “My only compass for whether I’ve gone too far is the reaction I get from people in wheelchairs, or with hooks for hands. Like me, they are fed up with people who presume to speak for the disabled. All the pity and the patronizing. That’s what is truly detestable.”

I am eager to get to the stage where a person’s disability is not the first thing we notice about them. Imagine: no more stories about people “overcoming” their disability to achieve great [read: able-bodied] things; no more disabled people being “inspirations” to [non-disabled] people. And if and when we *do* notice someone’s disability, it’s a natural part of their personality, like what makes them laugh, how they treat others, and the way they lead their life. If that crowd of punk rockers is any barometer, maybe we’re slowly moving closer to this new normalcy.