Head Butting About Wiping Bottoms

“Let’s face it, disability sucks!”

How many times have we, people living with disabilities, heard that statement—or a similar one—coming from the lips of some well–meaning person? Eager to show affinity, sympathy, empathy, they share instead their flawed perception of what it is like to live with a disability. How many times do we find ourselves speechless, unable to respond to a remark that insults the dignity in our identity as people with disabilities? Well, setting our manners aside, this is what most of us would really like to say…

Speak for yourself, my over–eager friend, because you’re certainly not speaking for me or the people I know who have lived with disabilities for most of their lives! In fact, I think you have been reading too many articles and watching too many movies, like the recent The Theory of Everything, a film that depicts disability as pathetic, heartbreaking, and tragic. You don’t even realize, along with your nondisabled peers, that you’re being brainwashed, succumbing to the movie director’s manipulation, his cameraman honing in on actor Eddie Redmayne’s weakening physicality as he attempts to struggle to eat, walk, and battle the steps in his character’s home. (Why on earth is he living in such an inaccessible house in the first place?) The actor’s portrayal of Stephen Hawking, one of the greatest minds of our time, is intended to strike the chords of pity in our hearts and play upon our fears of our own mortality. All because he can’t wipe his own butt!  

The fact of the matter, when it comes right down to the very bottom of it, is that butt–wiping is no big deal. I’ve lived with my disability, cerebral palsy, my entire life. I wiped many a butt when I worked as a camp counselor in my twenties, when I became a mother in my thirties, when I’m with friends who’ve needed my assistance in the bathroom. There were times in my life when I needed the same help, too. (Turnabout’s fair play!) I can say without hesitation that shame, self–pity, or indignity have not been on my mind or the minds of the owners of the butts I wiped. Why, one friend even related that when she cared for her mother in her later years that the two often joked about the role–reversal. On a similar note, I’ll even admit to having some of the most intimate, bonding, and humorous conversations during those down–to–earth bathroom gatherings; butt–wiping has been known to release inhibitions that keep us uptight and prevent us from making human connections.

In the end, we all just want to get out of the bathroom and on with the business of living. So, please don’t tell me my life sucks — it’d be more helpful if you’d just pass the toilet paper!

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Denise Sherer Jacobson is the author of The Question of David: A Disabled Mother’s Journey Through Adoption, Family, and Life