It's a Life, Not a Feel-Good Moment
I was dismayed recently when a university newspaper ran an article about my son Noah's return to campus. The story reported on the highlights of his 2 1/2 -year hiatus from school. During that absence he had been rock-climbing, surfing, kayaking and paragliding. The hook was that he is a quadriplegic, the result of a freak accident in December 2002.
The story delivered an inspiring tale with which I am all too familiar. In the past three years I have read dozens of these stories, and they are poignant, each and every one. I have also learned that the lives of those who are paralyzed are more about what is not discussed than they are about what is trundled out time and time again.
So, at the risk of being branded a parental ingrate, I admit to having a problem with the inspiration thing. We all know the devil is in the details, so why the charade? Must we persist in defining disability only in ways that make us, the able-bodied, feel good?
By doing so we delude ourselves into thinking their lives are some kind of fantasy camp. Obviously, they are not living happily ever after in an amusement park of accessible activities. Nor is their existence an endlessly grim continuum of incontinence and indifferent caseworkers. Somewhere in between is a life.
The reason for the inspirational reflex is simple: People in wheelchairs unsettle us. The thought that life can change instantly shatters our sense of security, and we able-bodied people are repulsed by this vision of vulnerability. To compensate we venerate some paralyzed people with recognition that is as insincere as it is facile. This method of insulating ourselves from the fear of contagion, this inspirational fairy tale, is clumsy, and it irritates me.
Those who are paralyzed are weary of being pitied, not to mention being regarded as inspirations. In fact, our pathos confines them to the orbit of their disability. Each attempt to launch themselves outward is met by the gravity of our need for a feel-good moment.
The softball journalism of these moments may be well intended, but it sows confusion and, worse, inaction by making us complacent. Is it any wonder that legislation that would really accomplish something, such as the Christopher Reeve Paralysis Act, stalls? This legislation was introduced in Congress in September 2002. Three months later, when my son broke his neck, the legislation sat in committee. Today it remains there awaiting action. There are 11,000 spinal cord injuries each year in the United States.
An audience's desire for happy endings is reasonable. I'm okay with that. I want them myself. But the truth is that these stories do not end. My son's life goes on. I try to understand it in the context of what he shares with all who are paralyzed. They are not necessarily inspirational, but they are, every last one of them, living extraordinary lives. They deserve something other than just a feel-good story.
John Smith is a writer and postmaster in Hood River, Ore.