they took my picture

In 1974, 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, pigtails in my hair and a smile that was waiting for the tooth fairy. Because of the cerebral palsy that had affected me since birth, I walked with crutches and had long leg braces made of metal and leather. Those braces weighed me down in many more ways than simply physically. Wearing them felt as confining as a straight jacket. I thought it was special when I was selected to be the poster child for the county where I lived in New Jersey. In my six-year-old mind, this was important stuff.

The day came for the first photo shoot. My new dress, freshly shampooed 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 the 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. Halfway through my year as the poster child, my orthopedic doctor told my parents I didn’t need my long leg braces anymore. They had served their purpose and were no longer necessary. The powers that be at United Cerebral Palsy refused to let me be photographed as poster child unless I was wearing my braces. Their reason was that I didn’t look pitiful enough without them.

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 of my life and see it often 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 people are compassionate, some are insensitive, and some simply don’t have a clue. But that look always leaves me feeling like I have inadvertently swallowed some lemon juice.

As I got older, I met other people in high school and college who also had physical disabilities. Through conversations and shared experiences, I learned I could do many things because of my disability, not in spite of it. That realization resuscitated my soul.
Over time I fell in love with advocacy. Learning my rights and to use my voice made my confidence swell with each success. When I was able to speak to government officials about programs that would increase the quality of life of those affected by disability, I felt the satisfaction of Superman after he rescued Lois Lane.

One day in 2007, I got the application inviting me to participate in the Ms. Wheelchair Kansas pageant. At first, I scoffed. I would describe myself in many ways, but beauty queen is not one of them. But as I read more about the program, I learned that the Ms. Wheelchair America pageant is not a beauty contest. Instead, it is “a competition based on advocacy, achievement, communication and presentation to select the most accomplished and articulate spokeswoman for persons with disabilities.” Ever since I was young I have wanted to be a public speaker. Talking to various audiences about issues that challenge people with disabilities, as well as ways to empower and respect us would enable me to do my small part to change negative perceptions. Because contestants in the Ms. Wheelchair Kansas pageant had to have a platform, write a speech, and communicate about disability awareness, I thought participating would be good practice for my future career. To my shock and amazement, I won.

One of the highlights of the year was being able to travel to Bethesda Maryland for the Ms. Wheelchair America pageant. I think anyone who is affected by significant disability sometimes dreams of a world where there is no discrimination, and everyone is given the respect they deserve. That was my experience at the Ms. Wheelchair America pageant. It was without a doubt one of the most empowering weeks of my life.

There were various judging sessions where each contestant was asked questions about what she would do if she were crowned Ms. Wheelchair America. I had decided previously I didn’t want that title. I didn’t think I could handle all the travel that was required. So my goal for the pageant was to get to know the twenty-six other state titleholders and to do my best to impress the judges. The women were incredible. All were wheelchair mobile and all had impressive stories to tell. Ms. Wheelchair Texas went to college on a wheelchair tennis scholarship. Ms. Wheelchair Virginia taught special education when she was diagnosed with multiple sclerosis. Ms. Wheelchair Maryland had held a job as a security guard, and Ms. Wheelchair Massachusetts was a quadriplegic who had lost nearly fifty pounds by working out regularly at her local YMCA.

As bonds were formed we communicated about our common struggles, and on comedy night we laughed about our disabilities. The power that I drew from that group will keep a light burning inside me for decades.

At last, it was the night of the crowning ceremony. In a formal gown with my hair and makeup professionally styled, I felt like Cinderella, except my life had already changed. When the announcement was made that was not one of the top five finalists, I thought I was done. Then the head judge said he had a special announcement. There was another award that year.

“They say wildflowers thrive in the Midwest,” he began; “one of them holds the title of Ms. Wheelchair Kansas.” I was so stunned that I could barely process what he said next. The judges were giving me The Bouquet Award because they said I had “the uncanny ability to leave the judges with a little more joy than they had before I entered the room.” No award of its kind had ever been given before in the pageant’s 35-year history.

When I regained my composure, the head judge asked me to join him where he was on stage. When I did so he knelt down by my wheelchair and gave me a hug that encompassed all the joy I was feeling. I looked up and smiled big.

They took my picture.