Guest Post by Stephen Gallup
Last week, a columnist for the local newspaper interviewed me in connection with a memoir I wrote that’s being published this year. It was a comfortable, low-key discussion in which he asked about the basic facts regarding my disabled son Joseph and what I’ve learned that might be of value to other families.
It was the sort of dialog that required no special preparation in advance. I just sat down with him and talked about the subject closest to my heart. But looking back on it now, one thing bothers me. In concluding the interview, the reporter expressed heartfelt sympathy for everything I’ve endured. He was being more than polite. I mean, he laid the compassion on with a spatula. Startled, and already thinking ahead to what I had to do next that day, I just thanked him and said goodbye. But now that final note troubles me.
I don’t want sympathy!
First of all, from the point of view of a new author hoping to promote his book, sympathy is not a good thing to be inspiring. Some readers say they dislike memoirs because so many examples of the genre are tales of woe, abuse, deprivation, and general unfairness, presumably written by people who somehow expected life to be all sweetness and light. I understand that view of memoirs, although it’s inaccurate. Stories, whether true or fictional, by definition have to revolve around a challenge or problem. So, if you like stories, it makes little sense to object when the characters have issues. It’s what they do with those issues that matters, in literature as well as in life.
Our family took certain stands with regard to Joseph’s condition. You may not agree that they were wise or appropriate, but from the perspective we had at the time, no other course of action seemed right.
We accomplished something, too. For example, our son, who was completely immobile at 18 months of age, when we took matters into our hands, was walking independently at 39 months. Also, because we had a plan, we were able to maintain a generally upbeat and optimistic frame of mind, while other parents known to us, who had similarly disabled kids, were living from one doctor appointment to the next and going through a box of Kleenex each time.
Yes, that glorious early momentum came at last to a grinding halt. Joseph is now 26 years old and still disabled. But at least he isn’t disabled because we never tried. There’s comfort in that.
But this is just the beginning of my reservations about being on the receiving end of pity. Although I can’t avoid being Joseph’s spokesman (whether he approves of what I say or not), this is his story, far more than it is mine. I seriously doubt that he wants anybody’s pity.
And what does pity mean, anyway? Robert Rummel-Hudson, author of Schuyler’s Monster, speculates on his blog that it’s one of two responses the world has for disabled kids: They’re either judged for failing to meet expectations, or they’re viewed as being inferior. Of course, neither response is constructive or helpful. It’s true that disabled people and their representatives are carrying a burden—but the same can be said for most folks. This is the main thing. It’s a rare soul who gets through life without encountering disaster or some extra difficulty.
If we can make life a little better for such a person, we are only doing what we hope someone else can do for us, if not today, then soon. If we cannot help, then the simple respect due to a fellow-citizen is appreciated far more than sympathy.
I wish I'd had the presence of mind to say some of this to the interviewer.
Stephen Gallup is the author of WHAT ABOUT THE BOY? A Father’s Pledge to His Disabled Son. For more information, visit fatherspledge.com.
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