The Thing Is…

BoyZilla, making silly faces at meToday was a good day. Her Highness the Tween was the only girl in her class invited to participate in a regional math competition at the University of Maryland. She and DH skipped ice skating lessons today and headed out early, which meant I got to spend the morning with BoyZilla. He was being wonderful and goofy. He spent the morning making silly faces at me (I submit this photo as evidence), showing me his best moves from yesterday’s first grade dance party, and telling me excitedly about his favorite scenes from last night’s episode of Star Wars: The Clone Wars. I never was more than a casual observer to the whole Star Wars thing, despite being married to a Star Wars fan (who would never miss anything related to the genre in the theaters, but would never go so far as to clad himself in costume and wait all night in line). So now, thanks to heightened interest by a 7-year-old boy, I am learning more about the characters and their comings and goings, who is whose enemy, and practically every punchline along the way. It’s ok, though; I don’t mind that my son is discovering something new to spark his own creativity.

I even got a haircut today. You have no idea what a big deal this is. I used to have a stylist that came out to the house, and she’d do all four of us at once. Now, though, she no longer comes here, so my family goes to her shop, which is inaccessible to me. Which means I have to go somewhere else separately, which I wouldn’t mind, except that it seems hard to work my little appointments in. But, I went today. Not that I needed it or anything… my spiky hair was getting too long to be spiky and I was desperate. So, I do feel better.

But, you see, I’ve got this overarching sense of dread. This weekend is the 81st Annual Academy Awards, an event which I never miss. I am brought back to wonderful memories of dinner parties with my good college friend on Oscar night, where we’d sit on the sofa with plates of cheap spaghetti in our laps, lights out and eyes fixed toward the TV for more than three hours. Or the day in 1990, when Daniel Day-Lewis won for My Left Foot, a source of particular pride as his portrayal of a person with CP was flawless, and then later that same year, the Americans with Disabilities Act became law. Mr. Day-Lewis came for a special screening of the film in Congress that year, as part of the final push toward passage of the law. I was there. It was wonderful. So to see him win the award just a few weeks later, that was the best ever Oscar night for me.

But this year, I’m dreading the whole thing. You see, Jerry Lewis will be receiving the Jean Hersholt Humanitarian Award because of his longstanding work with the Muscular Dystrophy Association. He is being commended, they say, for raising millions of dollars to help find a cure for what some only know as a “terrible disease.”

But to those of us living with disabilities, Mr. Lewis’ selection this year is like a slap in the face. His use of pity and negative stereotypes of people with disabilities in the name of raising money has done a great disservice to the community at large, those of us who battle to break down those old stereotypes every day.

Jerry Lewis would have you believe that people with disabilities should be pitied, and that because our bodies don’t work, we should learn to be happy being “half a person.”

He is known for saying this about his methods: “If it’s pity we’ll get some money. I’m just giving you the facts. Pity … if you don’t want to be pitied for being a cripple in a wheelchair, don’t come out of the house.”

Do I want people with that kind of attitude representing people like me, in any way? You’ve got to be kidding. I do come out of my house, every day. Yes, I use a wheelchair. It’s true, I really can’t walk. I never have been able to. But, I am a wife, a mother, a worker and a taxpayer in this country. I do not want pity. I want equality. And for the millions of people who aren’t disabled, who sit there year after year and listen to him drivel on and on about how sad and incomplete my life must be, and come away with that attitude fixed in their minds? How will I ever be able to compete with them, for fair employment, equal access, and basic human dignities, when somehow my life is portrayed as less than human?

No thanks, Mr. Lewis, I don’t need your help. I’ve spent my entire life trying to shed the negative image you’ve cast upon me. You don’t know me at all. I am whole. Even in a wheelchair. My life is good. It might be hard to believe, but I really don’t sit around feeling sorry for myself all day. I don’t have time for that. Guess what? Other people depend on me. Yes, I am disabled, but I am the one who pays my bills, puts food on my table, takes care of my kids when they’re sick, and does all the other things that just about any other woman, disabled or not, would do.

I will watch the Awards this weekend. But I will be crying on the outside, and raging on the inside. I cannot believe it has come to this.

Many of my friends and colleagues are actively protesting the Academy and its decision to grant this award to Jerry Lewis this weekend. I urge you to visit the following resources:

Thank you for reading, and I hope you’ll watch this weekend’s awards with a new perspective.

(for Laura.)

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