Having Awareness of Awareness

As "autism awareness" month falls upon us, it is important to critically evaluate whether the "awareness" is doing good or ill, whether the message is improving people's lives or perpetuating the same old bad, or even setting us back. Not just autism organizations who use pity to line their pockets during April need to be under scrutiny, but everyone, including myself.

In the past I have blogged twice about disability simulations and awareness, first about yada4schools and again about Northern College's awareness days.

The reason why analogies and simulations are attractive to me is because my experience of the world is so different from most people's that an analogy or simulation is often the only way others can understand my perspective well enough to try to take it.

However, disability simulations aren't universally loved by the disability community. In fact, they can have clearly damaging effects. Valerie Brew-Parrish writes in Whether their perpetrators realize it or not,
Disability Awareness Days send THE WRONG MESSAGE,

Like the Jerry Lewis Telethon, disability simulations should be abolished. The disability community should be as outraged by disability simulations as they are over the negative implications of telethons. Overwhelming feelings of pity well up in those who simulate a disability -- and pity does not equate with dignity. Disability simulations rob persons with disabilities of their dignity and self respect.

Simulations are phony. To "simulate" means to assume the mere appearance of -- without the reality. The reality is this: nondisabled persons can never understand what it is like to have a disability. Jumping in a wheelchair for a few minutes, wearing a blindfold, and stuffing cotton in one's ears does not make a person understand life with a disability.

Brew-Parrish makes the enormously important point that someone who does not experience day-to-day life with a disability--especially a disability one has had from birth--has not had any chance to adapt to the experience.

This point was clearly illustrated a few years ago when airline personnel decided to blindfold themselves to test evacuation procedures in case of an airline crash. The results were disastrous. Naturally. The airline staff had no training in mobility or orientation. Therefore, they erroneously concluded that blind persons could never safely evacuate a plane. Nothing could be further from the truth.

When I'm disoriented in a dark place, I let my blind husband lead the way!

I am reconsidering my former stance on simulations. I do still think there is value in being able to find analogies to build bridges between vastly different experiences of body, mind, and perception. But do analogies and simulations actually do that effectively without negative side effects of pity or fear?

I like the Brew-Parrish article particularly because she offers concrete, positive ideas for solution,

Awareness Days can be beneficial if it they are done properly; it is important for the public to meet with persons with disabilities and to interact with us. Why not have people who use wheelchairs discuss obstacles and the need for accessibility? Deaf persons can demonstrate sign language skills, and blind persons can show proper travel techniques. The public needs to know we exist; that we are professionals, parents and homeowners just like them.

It is important to be aware of awareness itself.

(thank you to the reader who pointed me to the Brew-Parrish article)