Your editor (third from left) on a research expedition

September 2000


I've known Noah since he was born, which wasn't all that long ago: Noah is three-and-a-half now. His intelligence is sometimes unnerving. His manner is sometimes very funny. Most striking, he is an independent thinker, someone whose way of looking at the world makes you realize he is already a person capable of complex reasoning and real opinions, not "merely" a child. Sometimes when I look at Noah I see the grave demeanor of a very Old Soul.

This should not be surprising. Noah made his world debut far earlier than anyone expected. He weighed only a few pounds on arrival and spent the first eight weeks of his life in the hospital, survival uncertain. Now when I look at Noah I try to imagine how that time must have felt to him. I'm convinced that he got a head start on some of the deeper meanings of being human.

I don't get to see Noah often. This past Christmas it had been a while. Sitting on the couch, opening presents, we were getting reacquainted. Suddenly he stopped what he was doing and looked at me hard. The expression on his face changed and I knew that The Moment had arrived. It's happened with all the kids I've known, so I've grown to expect it, to wonder when it will occur and just what the circumstances will be when it does happen.

With Noah, there were no questions. He simply stopped what he was doing and "saw" for the first time my one-fingered right hand (just as, later, I could tell he was registering my limp for the first time). Every time The Moment happens, it feels to me like being thrown out of Eden. The kid in question just ate a big piece of the fruit of the Tree of the Knowledge of Good and Evil and life will never be the same.

As Noah and I looked at one another I tried to fathom what was going through his head. His puzzled expression gave way to something else. Was it fear? In these circumstances my adult mind imagines that the child is wondering, as he assesses the damage, the oddly different parts, "Will this happen to me?" But maybe that's nothing more than a failure of imagination on my part, a projection onto the questioning child of my own lingering anxieties. Probably it doesn't matter precisely what the child feels. What matters is how the adults responsible for the child respond.

When I lived on the East Coast, Tom, my prosthetist, had two sons, about four and five years old then, who sometimes came to work with him when their Mother was busy. The boys had free run of the shop, made friends with the clients, got to see all of the creative things their father was able to do for people. They saw, as a matter of course, casts and crutches and stumps and miscellaneous missing body parts. I once told Tom I admired how he introduced the boys to his world. His response suggested that maybe I was a bit odd for thinking his behavior was remarkable. But it was remarkable, sad to say; he was simply too remarkable to see it.

Unremarkable, by contrast, are all the parents who work overtime to make sure their children have a hard time understanding the simple and benign truths of difference. My friends Ed and Ric, partners for almost twenty years, are planning a trip to visit Ed's brother and sister-in-law, who have embraced fundamentalism. "You'll have to sleep in separate bedrooms," they were told. "And please don't show affection in front of the children." Such dismal constraints notwithstanding, Ed decided it was better to go, trusting to the kids to figure out, on some level, the truth Ric and Ed's love will demonstrate. Better to have them see at least a bowdlerized version of Uncle Ed's life than none whatsoever.

All of these situations came to mind when I was editing two of the features for this issue of BENT, Danny Kodmur's "How Much Does it Matter: Wrestling with the Metaphysics of Disability," and "Access Denied: Three True Tales." In subtle and not so subtle ways, both articles examine what it feels like to be an outcast, to be, emotionally or physically, "cast out" of the tribe's ordinary rituals of recognition and community.

That's the way it will continue to be for as long as we faggots and crips allow ourselves to exist at the margins instead of struggling closer to the center. We will continue to shrink from our own images, and in so doing perpetuate fear and loathing and the dark side of difference, just a few of the ingredients necessary for injustice in a society that needs little encouragement when it comes to oppression. That's the way it will be for as long as children are allowed to look at us with fear, discouraged from knowing the simple truths of who we are.

At dinner later on that Christmas night, Noah sat on my right. His Mom invited us all to join hands to offer thanks before we ate. Noah drew back, wouldn't hold my hand. It made me sad, but it did not make me despair, because I know that Noah's parents will answer his questions with love and openness, and I know that I'll return to let him grow accustomed to the great ordinariness of my great difference.

Bob Guter

© 2000 BENT


BOB GUTER has been a bilateral amputee since the age of six as the result of multiple birth defects. His writing has appeared in The New York Times, Stagebill, and other publications. He lives in San Francisco.


September 2000