“Pain is not the main reason we want to die. It’s the indignity. It’s the inability to get out of bed or get onto the toilet, let alone drive a car or go shopping without another’s help…Every client I’ve talked to…they’ve had enough when they can’t go to the bathroom by themselves. Most of them say “I can’t stand my mother—my husband—wiping my butt.” People have their pride.
Janet Good, Founder,
Michigan Hemlock Society
With apologies to whoever wrote the biblical Beatitudes, I’d like to offer a friendly amendment: Blessed are the butt-wipers.
Having said that, let me now attempt to break the silence on a topic that has been taboo for far too long. I can’t wipe my own butt. There! I said it! And further more, I haven’t been able to wipe my own butt for 20-some-odd years now. And every day over all those years I’ve always figured out a way to get it done. Some would be surprised to know that I still manage to lead a pretty fun life.
It doesn’t surprise me any. There have been far more her-aided men than I throughout history who could make the same claim. For instance Steven Hawking. There’s no way in the world he wipes his own butt. And in his heart of hearts, I ‘m sure the good professor would agree that wiping time is not the dreaded submission to humiliation a lot of people think it is.
In fact there is often a very special kinship between wiper and wipe. It can be quite spiritual. It’s hard to describe. But for those of you who haven’t experienced it, there’s an experiment you can conduct that simulates the feeling.
First make a list of the close friends and family in your life. Now make a list of the close friends and family in your life you could call upon if you suddenly needed to have your butt wiped. (the same applies for bowel programs.) The second list sure is shorter than the first, isn’t it? It is with those folks on the second list that you share something deeper. The longer the list, the richer you are.
I have a friend like that. Her name is Carolyn. We’ve been buddies for a long, long time. And one of my fondest memories of her was the time I drove my wheelchair through some doggie refuse. It got all in the ridges of my tiers and she had to scrub and scrape and scrub and scrape. At one point she interrupted my repeated apologies by saying, “Hey, shit is a part of life.”
That’s what I mean. That’s the kinship. I almost proposed to her then and there. Carolyn is definitely on my list of people I could call in the event of a butt-wiping emergency, and I hope I have earned a place on hers.
But imagine what a better place this would be if all people shared her enlightened perspective. Even among other folks with disabilities, us wipees have second-class status. I think one of the biggest problems with our movement (no pun intended) is that there are not enough wipees in leadership positions. If I were on the board of an independent living center and we were hiring a director, I would pitch the resume and ask one multiple-choice question: Have you ever a) had your butt wiped, b) wiped someone else’s c) none of the above? If the answer is C, you need to go back and spend some time in the trenches.
So all us wipees need to stand proud together and declare ourselves. If not for our sake, then let’s do it for all those victims of society’s lethal fear of a little think like doodoo. We must stop the madness. Our group is note exclusive. Every Homo sapiens has at one time been a wipe—every president, every people, every supermodel. No one has ever walked this earth who was born fully toilet-trained.
How easily we forget where we came from.
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Originally published in New mobility Magazine, August, 1997, p. 52. Reprinted in Spinal Network: The Total Wheelchair Resource Book, Barry Corbet et al, editors, Nine Lives Press Copyright @2002. Both available at http://www.newmobility.com/bookstore.cfm. Printed here with the permission of the author.
About the Author
Mike Ervin is a writer and disability rights activist living in Chicago. His play The History of Bowling was produced at the Victory Gardens Theater in Chicago in 1999 and 2000, by the Know Theater Tribe in Cincinnati in 2001, by Mixed Blood Theatre in Minneapolis in 2002 and by Circle Theater in Omaha in 2004. He also received a 2001 playwright's fellowship from the Illinois Arts Council. His other theater productions include The Plucky and Spunky Show, which he co-wrote with Susan Nussbaum. It was originally produced at the Remains Theatre in Chicago (1990).
By day he is a free-lance journalist and has published over 1,000 articles and essays - mostly on disability topics - in more than 40 newspapers and magazines, including the Chicago Tribune, the Los Angeles Times, the Miami Herald and the Progressive. He is also producer of The Strength Coach, a nationally-syndicated radio talk show.
Mike is a founding member of the Chicago chapter of the direct action disability rights organization ADAPT. He is proud to have been arrested over a dozen times for civil disobedience. Mike is also founder of Jerry's Orphans, which organizes annual protests against the Jerry Lewis telethon. His play The History of Bowling was recently published in Beyond Victims and Villains: Contemporary Plays by Disabled Playwrights.