At six years old, I saw myself as pretty typical. However much of the world saw me as "Tiny Tim."
I was a scrawny kid with skinny arms and legs, pig-tails in my hair, and a smile that was begging for a visit from the tooth fairy. Because of the cerebral palsy that had affected me since birth, I walked with crutches and wore leg braces, which weighed me down more than just physically. They were a tangible reminder that I was different from my peers. Wearing them made me feel as awkward as my unsteady gait.
I thought it was special when I was selected to be a poster child for United Cerebral Palsy representing the county where I lived in New Jersey in 1974. At a time when I was often excluded from games of tag and climbing trees with friends, I saw this opportunity as a benefit of my disability. I was singled out, but for once in a way that I thought was positive. In my six-year-old mind, this was important stuff.
The day came for the first photo shoot. My new dress, freshly styled hair, and big, brown eyes all reflected the excitement bubbling inside. Standing on the designated mark, leaning on my canes, I smiled big into the camera as the photographer set up the shot in such a way that nobody could miss my braces.
They took my picture.
The meaning was lost on me at the time, but that image was put on donation cans all over town that year in grocery stores, banks, and restaurants. The idea was that people should donate their spare change to raise money for cerebral palsy, and, to some extent, people should also feel sorry for me. Even at my young age, I took note of the stares, and the vibe from some people that my circumstances somehow made my life unbearable.
I am not sure I can adequately describe what it is like to be the object of someone's pity. The look in their eyes is a mixture of sorrow and "I am glad I'm not you." I've lived with it all my life and see it routinely in my day-to-day activities. When I can't reach something on a shelf or struggle to open a heavy door, most people rush to help as they give me that look. Some are compassionate, some are insensitive, some simply don't have a clue. But that look always leaves me feeling like I have inadvertently swallowed some lemon juice. Blech!
I don't think the decision makers who wanted me to be the poster child at the time were evil people. I am simply not convinced that anyone took the time back then to think about what that experience would mean for me in both the short and the long terms. The message was that, because I had cerebral palsy, I somehow wasn't enough, and that society at large should feel bad about that.
That's a whole lot of negativity to put on a six-year-old.
I know the same decision makers at United Cerebral Palsy had a job to do at the time. They needed to raise money for the organization, and I understand that an effective way to accomplish that goal is to pull on the heart strings of the public. Pity has been known to be an effective means for raising funds.
My parents tell an interesting story about that experience. I wore long-legged braces at the time, and halfway through my year as poster child, my orthopedic doctor told my parents that I didn't need to wear the braces anymore because they had served their intended purpose. The people at UCP would not let me be photographed as poster child unless I was wearing those braces. Their reason? They said I didn't look pitiful enough without them.
In our society, people with disabilities are commonly seen as "less than," but it's just not true. In terms of disability, many people distinguish between "us" and "them." Disability simply means that some part of a person's body works a little differently than the body of someone in the general population. Some adaptations might have to be made accordingly. In my perfect world, everyone would share that perception.
Click Follow to receive emails when this author adds content on Bublish