my contaminated SMILE   by Joe Ehman
The photo is of a blonde woman at her desk who is obviously a professional helper. Her smile is as perfect as her hair, and given with such insincere energy that it almost creates a halo around her.
Baring the fangs of help
While waiting for a red light to change a fellow came up from behind me and "helped" me, grabbing my wheelchair handles, pushing me across the street. I heard him say from over my shoulder that if only I would put my faith in Jesus, the good Lord would help me walk again. I called back over my shoulder that Jesus better ask if I even want His help. Then I took one more step over the line, telling him that maybe Jesus could help make him white. Perhaps I'm oversensitive about help I don't ask for. I used to do it for a living, so I know. While studying to be a social worker, I landed a part-time job as a hospital orderly. I saw myself earning humanitarian brownie points for helping those people. I bragged to my friends about how I helped patients bathe, dress, toilet, feed. They couldn't do it themselves. I did it for them. When my friends told me how saintlike I was for laying my healing hands on the untouchables, I glowed. That's where I developed The Smile. My workday started when the nurse handed me the duty list. It was my job to do what was on that list and also to answer the call lights. I pitied those poor people. They needed my help. I had to do something to make their lives better: adjust the bed, reposition them, open the curtains... and never know or ask if that's what they wanted at all. Completing the duty list was helping the patients. Answering call lights was not my idea of help. When I saw a call light flash above a patient's door, dread and fear came over me. A call light meant that a patient wanted something unknown, something not on the duty list, something I might not know how to do, something I might not want to do. If a patient dared ask for any of the above, here came The Smile. Tilting my head 35 degrees to the right, I contorted my face into a large, painful, cheek-to-cheek smile, exposed my teeth, glared at them and said "I'll help you in a little while. Other patients need me right now." Then I could get back to the real helping. Helping reduced suffering and made me feel good. After I had finished acts of help, I waited like a vulture for expressions of gratitude. I'd helped, hadn't I? When thank-yous weren't forthcoming, it was clear to me that those people weren't even human enough to be grateful. To get the thanks I deserved, I sometimes stood over the bed, behind The Smile. In a scolding-wheedling tone I'd ask, "Now, aren't we forgetting something?"
Don't make me get the nurse.
If ever a patient refused my help, I'd use The Smile. Behind it, I hid what I truly felt, disgust: You're pathetic. You make me uncomfortable. Helping you eases my discomfort about your existence, earns your gratitude, and gets me out of your room, quick. You say you don't want my help? Then I'll just have to make your life miserable. How could anyone refuse that smiling face? If anyone did, I'd lean over their bed again, smile more forcefully, and say, in my best holier-than-thou voice, I'm sorry but, Doctor's orders, you know. Smile. Don't make me get the nurse. Smile. It's for your own good. Smile. If you ever want to go home, you'll let me do that. Smile.
Now the tables have turned.
Today I'm a gimp at the mercy of folks who help without asking what I want. By now I should know better, but I still don't seem able to resist the impulse to jump in and help. My roommate, Josh, is another quad, a higher quad. He's been a second class citizen for about a year now. When I see him reach into the fridge for a can of soda, struggle forever to grab it and take it out, I feel uncomfortable. It takes, sometimes, two or three attempts. Josh may even drop a can on the floor where he can't reach it before he gets the can to his lap. Then he has to get it to the counter where he takes another five minutes to open it. That drives me nuts. So, I jump right in and do it all for him, without asking. When I jump in with help, I'm not thinking about what Josh wants. I know what he needs: help! Refusing help is difficult, even in a more formal relationship. I had an attendant who kept wanting me to have French toast for breakfast. It was his specialty, see. I told him from day one that I have an espresso and bagel for breakfast. I didn't want French toast. He insisted. This went on for four days. On the fifth, after my shower and dressing, I rolled into the kitchen only to see him sauteeing the French toast I didn't want. He was just trying to help. Homer Page, who edits Disability Life and Handicapped Coloradan, tells how a homeless woman begged him for a buck. When she saw that Homer was blind, she refused to take the dollar. Her pity was more powerful than her need. The lesson: Even if you're so bad off that you have to beg on the streets, you can't let a cripple help you. That's lower than low.
And actual help. What about that?
I have plenty of friends who live in non-visitable houses. Some offer to help me get in by hoisting me over their shoulders, doing a fireman's carry. They consider it preferential treatment. I ask them: if the Queen arrived for dinner, would they show their respect by throwing her over one shoulder, huffing and puffing her up the steps? Note: I used to allow this "special handling" just so I could visit my friends, just to fit in and not be left out. No more. I've been dropped too many times. If friends really want to help me, they'll put in a ramp. A ramp? Do I expect a ramp to magically appear everywhere I go? People say that's not realistic. That's when I ask them, "Would you live somewhere black folks aren't allowed?" Well, would you? Then I smile The Smile. I've had the benefit of professional training. Smile.
Joe Ehman made Mouth's acquaintance in 1995 when he came calling at the Mouthhouse to straighten us out about Jerry Lewis and the MDA. He'd read some terrible things we'd written about both. He was, that year, the local MDA chapter's "Person of the Year." (That's what MDA does to honor grown-up poster kids.) As usual, the Mouth was up to something urgent, so Lucy dumped a couple of reams of info on "Jerry's Kids" into Joe's lap and said, "Here. See what you think." He did. Important to note: When Joe returned to his MDA chapter office and asked a few pointed questions, they stripped him of his "Person of the Year" designation. That's when he came to work at Mouth. Joe Ehman today works at the Atlantis Center for Independent Living in Denver Colorado, and as an organizer for Adapt, Not Dead Yet, and the Freedom Clearinghouse. This is Joe. He's wearing an Adapt hat and a pair of those cool black wheel- chair driver's leather gloves. The photo is by Tom Olin.		What's this 'Visitability' Joe talks about? Click here to see about the Visitability Video we sell in our online catalog store. Or click here to read Laura Hershey's column about the visitability of a friend's home. To read a poem which was written to a professional helper like the one shown above, click here. But beware this poem. It's got one word in it -- lots of times, too -- that you can't say on TV, the one that rhymes with tit. Don't go there if blunt language upsets you.   TOP OF PAGE  | HOME | ABOUT MOUTH | SUBSCRIBE | back to more of Mouth #58