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Telling Jerry's Kids the Truth
by Greg Smith

One day, when I was about 7, my parents loaded my little sister, Tonya, and me into the car. Along the way, I was asking questions, not really understanding what was happening.

“Where we going, Mom?”

“To the telethon.”

“What’s a telethon?”

“It’s a TV program that is gonna find a cure to your muscular dystrophy.”

To me a TV was something you watched. The concept of a place from where broadcasts originated had never crossed my mind. When we arrived, the place looked like any other building in Elmira, N.Y. But entering the studio to me was like Dorothy entering the Land of Oz. The lights were bright, warm and inviting with the cameras and the director calling the shots. I’ll never forget that moment.

After a short wait, it was my turn. A man came and took my hand and walked with me around the camera and squatted to my level. The light was so bright it made me squint, and when the red light came on, I was just looking around checking out the whole scene.

“And we have here a young man named Greg Smith. How old are you, Greg?”

“Seven.”

“And when are you going to be 8?”

“March 25th.”

I wasn’t paying any attention to him. I was looking at all the cables and wires and lights and cameras ... and that microphone he kept putting in my face.

“Well, Christmas will be here before your birthday. What do you want Santa to bring you this year?”

“A bicycle.”

“A bicycle,” he repeated, sadly.

He put his arm around me, and started talking into the camera. He wasn’t talking to me any more so I started to leave. But he grabbed my shoulder firmly, forcibly holding me in place. He was talking sadly about a bicycle I would not be able to get this Christmas. How did he know I wouldn’t get a bike?

He sounded like he was going to cry. Then he stopped talking. The lights went dim. He stood up and all of a sudden he wasn’t so sad. He smiled and told me I did a great job, and then walked with me to my mom and dad and then we drove home.

Those appearances on the Jerry Lewis Labor Day Telethon in my early years created a fascination with the concept of broadcasting. And they also gave me a sense of delight for being the center of attention. I loved it when people would say, “I saw you on TV!”

But they also created confusion about my condition and my future. Every year at telethon time, I was promised, “A cure is five years away!”

Great! I would be able to play football and climb trees and jump off the high dive after all. But each year, the cure remained five years in the future.

Jerry’s kids grow into adults. Wouldn’t it be better to tell them the truth? As we approach this Labor Day weekend, I have some ideas for how we can help Jerry’s kids in new, exciting, energizing ways:

1. Tell ‘em the truth! A cure is not five years away, and even if it is, it probably will not be a “miracle pill.” At best, a treatment to decline the progression of the disease would be an exciting development. When I was a kid, I’d rather have had hope that I lived in a world that accepted and embraced me for my unique qualities than been fed the “five years away” fable every year.

2. Get 'em involved. Invite them to play with your kids, be involved in youth sports in some way, perhaps as a public address announcer, or statistician or team manager. Instead of sending in a $50 check, find a kid with MD in your school district and get that kid involved in extracurricular integrated activities.

3. Drop the pity. Everyone has a special purpose and a place in this world. There are no accidents or mistakes about who we are. Instead of pitying and feeling sorry for kids with muscular dystrophy, respect them for the inner strength they use to roll through life. I weigh 65 pounds, sit strapped into a power wheelchair and I feel sorry for most non-disabled people. People who pity me make me laugh.

4. Give on YOUR terms. Go ahead and give, but demand that it be received as a celebration of strength, not an obligation or debt you pay for your own physical “normality.” If you send in a check, write the words “NO PITY” on your check, or tell the operator that if they don’t write “NO PITY” on the request for payment, you won’t send your check!