Replacing Pity with Power: A Former Poster Child Speaks Out

Lorraine C_ChildhoodLorraine Cannistra is an author and speaker who was once a “poster child” for United Cerebral Palsy in 1974. UCP was founded by by Leonard H. Goldenson, then-President of United Paramount Theaters and ABC Television. He used his television background to establish very successful fundraising telethons and advertising campaigns featuring “poster children” with obvious physical disabilities. As you will read in her brutally honest account, this part of UCP’s history was a very different time. UCP is proud of the work we did during that era to help people with disabilities and their families, much of which was supported by telethon donations. But it did have a negative impact of children such as Lorraine, so we are equally proud that she chose to share her experience with us to make a powerful point. You can read more from Lorraine at www.healthonwheels.wordpress.com or contact her at lorrainecannistra.com.  

 

When I look at the picture now, I can see it so clearly. I can see the braces. The braces were made of metal and leather and weighed more than I did. They were cumbersome and hideous and confined my movements almost as much as a straight jacket. My pigtails, new dress and big smile only magnified the orthopedic braces. And that was the point. I was not only crippled, but I was cute too, and that combination made for a perfect picture of pity. The image said, “Look at me. I can’t stand upright without braces and the aide of crutches. Isn’t that sad? Isn’t it tragic? I can’t run or play hide and go seek. My life is full of heartache and so much pain that you must want to look away. You want to create distance between you and I. That’s okay. It is only fate that made your kids strong and healthy. Does that make you feel guilty? I have an easy fix. You can donate money to United Cerebral Palsy so there won’t be as many kids like me. That way you have done your part and you can sleep peacefully tonight.” Donation cans were all over town, with that picture plastered on the front. People could throw in their spare change and not have to think about me anymore.

It was all lost on me at the time. As a six-year-old kid, when I was chosen to be poster child for United Cerebral Palsy in Bergen County New Jersey, I was excited. I thought it was cool. I thought it was important. I thought it was an honor.

My parents have told me a story repeatedly about the year I was poster child. Halfway through the year, my orthopedist told them I didn’t need my long leg braces anymore. They had served their purpose and were no longer necessary. Back in 1974, the powers that be at United Cerebral Palsy told my parents that I could not be photographed as poster child unless I was wearing the braces. They didn’t think I looked pitiful enough without them.

In the forty plus years since then I have thought often about their motivation. On the surface I can sort of see that at the time the idea was to raise as much money as possible, and back then the most effective way to accomplish that was to pull hard on the community’s heart strings.

What I don’t understand is why nobody at UCP considered the potential damage of what they were doing on me. Didn’t anybody realize how demeaning it is to be the object of somebody’s pity? Didn’t they know that by trying to make people feel sorry for me they were making sure the playing field was never going to be equal? They were making a division between the “us’s” and the “them’s” of society. It has taken me a while to erase that line. Some people will never let me do it completely.

The other thing I believe happened in the year when I was poster child was that I began to internalize that message. I began to see my physical weakness as a deficit that was going to limit what I was capable of in life. That was the goal of the picture. The sad part is, in the process, it rubbed off on me.

Do I think that being poster child has really stopped me from doing what I want to do? No. But I will admit I have struggled with confidence and having a positive self-perception. There have been many times when that struggle has gotten in my way. Honestly, I don’t lorraine_cannistra and Leahknow how much of that comes from the fact that I was poster child forty years ago. There are times even now when I go to a restaurant with friends or out to the grocery store and people look at me with pity. Some still avoid eye contact or watch me struggle and want to look away.

Ironically, these days I have a career as a writer and public speaker. The main topic I explore is disability awareness and empowerment. I figure if I can tell a group of people something they didn’t know about disability or maybe challenge some negative perceptions a bit, then there is potential for some kids with disabilities not to experience some of the things that I did. If that is the outcome, then I can live with all I went through.

When I look at the UCP website today, I am convinced that the organization and I have the same goals. We want people with disabilities to be seen in a context of power not pity, and we want the community to view those with disabilities with a “one of us” attitude.

When I get ready to speak, I feel this odd mixture of nerves and excitement, and get so worked up that sometimes I think I am going to be sick. But at that point, I take a deep breath, exhale slowly and examine the crowd. I make a point to make eye contact with as many people as possible.

My message is simple. “Look at me, I am just like you.”

Because of My Disability, Not in Spite of It

Lorraine Cannistra is an author, speaker and wheelchair ballroom dancer who writes mostly about her personal experience with disability.The guest post here is an intimate look at her life, recalling the first moment she truly understood what she could accomplish when she focuses on what she can do.You can read more about her journey on her blog atwww.healthonwheels.wordpress.com or contact her at lorrainecannistra.com.  

lorraine_cannistra and Leah

 

Leah, my black Lab service dog, lies at my feet. She has just had breakfast and done her thing outside. After we cuddle for a bit, she sighs deeply and goes back to sleep.  We have been together long enough for me to know the drill.  She will wake every ten minutes or so to make sure all is well.  If she senses something wrong, she will take things as they come, do her best to fix it and then go back to sleep. Sometimes I tell myself I need to take “laid back” lessons from my dog.

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I took a deep breath and tried to wrap my mind around what I had just heard, in a moment that was both surreal and wonderful.  “Could you say that again?” I asked my coach through the phone.  I wanted to be sure I wasn’t just a young teenager who was dreaming.

“I just got word Lorraine,” he repeated. “You are one of 37 athletes that have been chosen from across the country to compete in the International Games for the Disabled. (What is now the Paralymics) You did it! Let it soak in for a minute.”

It was hard to describe what I was feeling, an overwhelming mixture of pride, excitement, relief.  But in that moment something else happened as well. My mindset shifted.  I understood, deep in my soul, that I had accomplished something huge because of my disability, not in spite of it. I knew that none of this would be happening if I had been born with the ability to break dance.

I had joined a sports team specifically for people with cerebral palsy almost four years previously. Being an awkward and painfully shy freshman at the time, I was used to being excluded.  Being part of that team meant that I met people with disabilities who were older than I was for the first time. Not only was I part of the group but they helped me to see a positive future.

Over time I excelled in sports and with the training of the head football coach at my high school, I was challenging international records in track. At every practice I pushed myself hard, being motivated by all the times in the past when I was expected to be content to sit on the sidelines and watch. Every lap I completed took away a bit of the sting of not being able to play tag or hopscotch. I knew I couldn’t walk. But I could race, and I was good at it. I started to concentrate on what I could do.

A few months later I went to college.  Coming from a big city, it was important to me to find a very small school that was completely accessible. In the days prior to the passage of the Americans with Disabilities Act, finding a school that met that criteria was like searching for the wizard on the yellow brick road.  But in 1987 I started attending Emporia State University in Kansas, where I eventually earned a Bachelor’s degree in English with a minor in Creative Writing, as well as a Master’s degree in Rehabilitation Counseling.

Lorraine CannistraBrandon and Lorraine Dancing

It was in college that I found that writing helped me make sense out of the world. If something made me angry or upset, writing about it could get the negative emotion out of me. It was also in college that I fell in love with advocacy.  I found that when I use my voice to speak about programs that enhance the lives of people with disabilities, I feel understood in a profoundly positive way. Over the years I have provided testimony to senators, representatives and the governor. When those programs become reality, the high I feel always outweighs my desire to climb a tree.

In 2007 I had the honor of being crowned Ms. Wheelchair Kansas.  It was during that year that I started speaking to various groups about disability awareness and empowerment.  In doing so I discovered what I was born to do.

I have to be honest and say I have my share of difficult days, when I wish for a world where everyone is treated with the respect they deserve.  But when my reality is different, I try to do what my dog does.  When I sense something wrong I take things as they come, do my best to fix it and then go back to sleep.