When you’re a person with a visible disability and you’re out there getting on with your life, it comes with the territory for people to often say to you…
You are such an inspiration!
I love the idea that my example in the world as a person living with paralysis would empower others to be the best they can be. After all, it’s my job description: “inspirational speaker.”
I don’t actually bill myself that way. But the simple fact of being a man who’s been a wheelchair user for nigh on forty years who is paid to speak in public about the disability experience automatically earns me that title.
Yet I don’t wholly subscribe to it.
Why, you might wonder, would I have a problem with that?
Because I find that the reaction people have to a paralyzed person living well is not actually to be truly inspired, however sincerely they use the word. They give themselves away with their next words: “…but I could never do what you do.”
Doesn’t sound like inspiration to me. Sounds like intimidation!
True inspiration is indeed what I’m after, so it’s been a profound struggle for me to search for a way to communicate the disability experience in a way that actually does inspire! I want people to come away with the belief that they can push beyond what they thought were their limits. I want them to at least believe that they could do what I do if they had to (like I did), even though they don’t have a clue how it’s done.
Because that’s exactly how it’s done. You move forward without a clue how. That’s how I did it — guided by therapists, reinforced by the love of my family and friends. And I can tell you it was as sloppy and emotional as any other life experience that pushes us beyond the edges of our comfort zone.
I so often see the “inspirational speaker” set up on a pedestal, set apart from others for being remarkable and uniquely strong-willed, talented, persistent, etc. Or just lucky.
What people expect from a great keynote experience is a profound emotional hit. They want the heart opening tug we get from stories of people who overcome great odds, bounce back from moments of darkness and doubt, find their way to the light of self-belief, and embrace life for all it’s worth. My job as a speaker is to energize the room, to offer fresh perspective. And to entertain (easily enough achieved with my impressive juggling skills, those of you who’ve seen me will know).
But is it true inspiration? Does the authentic insight into ourselves and our lives that we seek really reside in these kinds of powerful emotional moments? Not necessarily. I find that true inspiration often resides in a calmer place, where the recognition of our greater powers is a simpler understanding that leads to a kind of relaxed letting go, taking a deep breath in response to that moment of clarity. A moment of yes that seems obvious, self-evident.
It’s a fact: people who live well with disabilities, whether since childhood or acquired later in life, are not at all rare. It’s a pretty common thing. It’s not that big a deal.
See? Where’s the emotional jolt in that?! But if you take a moment to think about it, the above statement is quite radical. It challenges a core belief that living well with disability (and being perfectly happy with it) is exceptional. Only exceptional people achieve it — which is why they are the “exception.” Isn’t that the underlying belief in our culture?; we should honor the people who thrive with disability because they do what most other people couldn’t.
That’s the very core belief I’m devoted to changing, because the facts don’t support it.
People do it all the time. People who never would have believed they could.
Their ability to do it depends on whether they get access to what they need: rehabilitation, adaptive technologies like the Ekso, an accessible environment to live, work, and play. That’s not a matter of the human spirit, that’s a matter of public policy.
Above all else, their ability to do it depends on their ability to believe they can. As long as our culture operates on the belief that it takes an heroic force of will and the rare exceptional being to succeed with disability, people will continue to fall into the trap of self-doubt.
Many have rebelled against these attitudes, and fought their way to self-worth despite the lowered expectations which surround them. That is heroic, but why should they have to waste their energy on it?
The current inspirational model actually does a disservice to us all. By setting the bar artificially high, we make it harder for people to reach it. It will take longer for someone to adapt to a traumatic change. Some won’t make it. And that includes kids with disabilities, raised to doubt that they can play as a full a role in our world as anyone else. The inspirational model actually ends up having the exact opposite effect on the people faced with living with disability.
It costs us the contributions those people would make in their families, communities, and the workplace. It costs us money in the unnecessary Social Security and Medicate benefits everyone is so concerned about these days, from the people who leave jobs when they don’t have to, and from the secondary medical costs of depression, weight gain, heart disease, diabetes, skin breakdown, and all sorts of stupid, nasty things that happen when people are prevented from living the lives that are possible.
The true inspiration is in recognizing what the example of those of us living well with disabilities really models: that we are miraculously adaptive beings. Every one of us.
What would happen if we operated on that assumption as a society? What would happen if we designed our public policy around that belief? What would happen if instead of celebrating the exceptional people who thrive, we celebrate even more how it becomes almost mundane for people to adapt and live well with their disabilities because we expect it rather than doubt it?
This is where I get the big emotional hit. This is the dream I believe in. And I’m asking you to start by being willing to very simply and calmly believe that, with all it’s initial messiness and grieving and mystery, you could do it, too, should you ever have to.
Allow yourself to be truly inspired.
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.
