People with disabilities spark an avalanche of questions for children, who are naturally curious and, generally, uninhibited. We look pretty unusual to them. They don’t know what to make of us, but very much want to know.
Until some adult suppresses their curiosity, that is. Usually without intending to.
I see it happen very often. A child, fascinated by my presence, will make their curiosity loudly public. Like the five-year-oldish girl at the grocery store once who saw me and shrieked in evident delight, “Mommy, Mommy, it’s a man in a wheelchair!!!”
She was louder than the public address system calling someone to clean up the broken jar of honey on aisle seven.
Mommy promptly put her finger to her lips, glaring at her child, crouched down and released an angry, “Shhhhhhhhh!”
The girl, her bubble of enthusiasm burst, turned to me with a last, sad look. So I put my finger to my mouth, adopted a wild-eyed expression, and went, “Shhhhhhhh!”
The little girl beamed. The mother got angry. “I’m trying to teach her manners,” she said. My reply: “I’m trying to teach her not to be uptight around people with disabilities.”
I’ve had some really great experiences speaking to middle and high school students. They have the most spot on questions about disability, questions that no adult ever answered for them — or at least not well. Many of them, on hearing the above little girl story, reported having a similar experience with a parent and, indeed, they had taken the message to heart that they somehow they had to behave differently around “those” people.
The only thing left for these kids are the same traps everyone else falls into: images and messages from media and the arts which are infused with inaccurate stereotypes, and their own best guesses at what it must be like to live with a disability (also always wrong, by the way). They fall into the classic stereotype holes, missing out on the chance to understand the real human experience of being a person with a disability.
There was good news in 1975 when the Individuals with Disabilities Education Act (IDEA) was passed in the U.S. Congress. One of its key provisions is mainstreaming kids with disabilities in public schools. Kids with disabilities are no longer automatically shoved into special education where many have historically been denied the chance to develop to their true intellectual potential. (Have no doubt, the waste has been immense.)
This means that kids without disabilities are getting a lot more authentic contact with kids with disabilities. Familiarity breeds, well, relaxation.
I also speak to a lot of college students, and often ask them how many had a friend or a family member with a disability when they were young. A notable number of hands go up. I take that as proof of progress.
(It’s also true that a lot of kids with disabilities are being bullied, considered easy prey. But that’s another conversation.)
There’s been a true social transformation in the functional experience of living with a disability. People are able to participate and contribute at a higher level than ever in history. But a clear understanding of real people in this modern age who happen to have disabilities is the final frontier. We’ve got a long way to go to accomplish social models that fit the truth. There is still a revolution to be achieved in people gaining a general comfort level around people with disabilities — or the very notion of disability.
I’m hopeful that it’s happening, thanks exactly to our children now growing up around kids with disabilities, finding out that they’re pretty much people. Just like the rest of us.
It really works. I have two nieces who were very small when I was injured. Someone in a wheelchair is just no big deal to them; the most normal thing in the world. “What?,” my niece Stacey said, describing her surprise as she grew up. “Everyone doesn’t have a cool uncle in a chair that gives them wheelie rides and juggles??!!”
I go out of my way to interact with curious kids. I let them pet my fantastic black Lab Trilby. I pull out the juggling balls that are always in my backpack. I pop wheelies. I want to make sure kids can relax around disability — especially assuming that they might have already had the kind of experience I witnessed in the grocery store.
As those kids grow up, I hope for a number of things for them. I hope that they won’t be surprised by the notion of someone with a disability having substantial career goals. I hope that they’ll observe and absorb the adaptive creativity those kids employ and model. And I hope that they’ll realize, should it become them, that they are capable of dealing with it, embracing a whole life with a disability, and feeling just fine about themselves in the process.
…especially when they get old, as I am firmly in the process of becoming. As I gain impairments from age — much as I already am not liking it — I’ll switch to the power chair. I’ll rely on others for more help. My disability has shown me so plainly to not let my life be stopped — because it’s just not necessary. I’m counting on a generation that understands the common sense of adapting as we age, choosing to get out and keep living, no longer reacting to disability as a stigmatizing or embarrassing thing. They’ll see mobility technologies like the exoskeleton for the useful tools that they are. They’ll know better because they’ll have seen people with disabilities in action throughout their entire lives.
Won’t that be way cool?
Ekso Bionics’ Blogger Gary Karp is an author and speaker on what he calls the Modern Disability Experience. His work supports people making a recent adjustment to paralysis, and he helps business and government clients recognize and embrace the historic emergence of people with disabilities as employees. Learn more at www.moderndisability.com.