By Gary Karp
Most people we meet don’t get disability.
It can be frustrating, this unavoidable pattern of our lives with a disability; people responding to us in ways that are so disconnected from who we are as real people. Clearly unclear on what our disabilities mean to us.
We want to never feel patronized, viewed as some amazing hero just for getting up and putting in a normal day. And we get tired of hearing people say that they don’t think they could do what we do.
You get a strong impulse to set them straight, right? I certainly do. But how do we give a well-meaning person cause to take a fresh look at what they believe about disability? How do we prompt them toward exploring their deepest thoughts and feelings, and then be willing to make a major shift?
For starters, they need to not feel blamed. An in-your-face approach definitely doesn’t work. Would you open yourself to the influence of someone who essentially treats you like an idiot? Of course you wouldn’t. You might even be having this effect and not realize it.
Where do their perspectives come from anyway? The media and the arts have a very powerful impact, and they generally portray disability in the extremes. It’s either a tragic experience we should avoid at all costs, or it’s a heroic matter of “overcoming.”
Or they get it from imagining what it would be like if it were them; paralyzed, blind, deaf, missing limbs, living with an intellectual disability. The only thing they can imagine is that it would be highly undesirable — if not a living hell. So they naturally project all of that onto us. What else can they do?
Maybe someone was rude to them when they offered help. Maybe they spent a month using a chair with a broken ankle, and it was anything but fun.
The thing is that none of this is their fault. Really.
They are also not to be blamed for not being current with what we know is true: disability is a vastly different experience today than ever before. The experience of living with a disability has utterly changed in a short stretch of recent history. They need our help to catch up with what is actually an incredibly exciting process of exploding human potential. We need to communicate that the modern disability story is cool.
So be gracious about it. Win their respect. No one wants to be lectured, but I think most appreciate a chance to gain some clear insight.
I try to help people understand that my disability is simply a part of who I am, that I don’t spend time wishing it weren’t the case. That it’s normal for me. I try to help them understand that I don’t think about limitation, but possibility. I try to help them understand that adapting to and accepting disability is not a rare thing but a very common thing. I try to help them understand that investing in independence is what we need to continue doing. I try to help them understand that not having a life is not an option, so I do what it takes.
Some will never get it. Or maybe it will take a while. Just try to keep in mind that the only way in is with kindness. Start there, find your own voice, tell your own story, make a human connection. That’s the best shot you’ll get at making progress bringing hearts and minds in line with the reality of this incredible new world of disability.
Gary Karp has been writing, speaking and conducting trainings on disability since the release of the first of his four books, “Life On Wheels: For the Active Wheelchair User” in 1999.