During a family gathering and reflecting on our family stories recently, a feeling of gratitude welled up within me in appreciating the family I have and the parents I am blessed with. You see, through my disability, I’ve met many people with disabilities and their families, that essentially do not look beyond the challenges of the disability. Somehow my parents were able to take care of my physical and medical needs and see to it that their child could become a good citizen and not just comfortable and protected.
My parents were determined to look beyond some of the typical physical milestones in which I was delayed, compared to the average child. They were able to give to me the gift of education, instilled in me a sense of values, to be polite and caring, to be productive, to have an awareness of things around me and to cultivate an interest in things beyond. These things are invaluable to me today as I live a life not only with significant physical challenges, but also, I am living a life worth living.
Once when talking with my mother, I asked her why she let me go to camp. You see, as an adult, I am two feet eight in height and must have been even smaller and lighter then. My mother gave me a wry look and said, she had no choice because I had said I was going. I had to smile because in part there is in me a spunky nature and a desire to mix in with others, but also because I know now my parents wanted me to have access to experiences just like other children. Naturally, my parents checked the camps regarding my well-being before I went.
My family moved fairly often, and social skills were helpful in making new friends. However, in one new school it would be a challenge. The principal isolated me from the students “for (my) protection”, and then had a meeting with the whole school in the auditorium when I was out one day and told them that no one was to touch me or talk to me, again for my protection. My father had some words with the principal, but it was a challenge to make friends that year. However, there were other social outlets as I was involved with faith-based activities.
There was a sign in my room growing up that read: Hearts, like doors, open with ease, when you say thank you, and if you please. This maxim was reinforced by my parents’ examples and frank speaking to me that people do not have to automatically like me or help me just because of my disability. It can be a difficult thing to remember to be polite when one may have constant pain and need significant assistance in a world not built for them.
My parents not only had expectations, such as keeping my room clean, and making my bed etc, but also made it so that I could take care of what was needed. My father did terrific things for me, like put in a second lowered handrail that matched the one we had for our stairs, legs of furniture cut down to size for my use, and in one home installed a low-rise toilet and sink so I could have easy access. When my parents looked for homes, they looked for low windows so I could look outside, and carpet to cushion my falls. They had flip doorknobs installed because I could barely turn the standard knob. In a world where I often must adapt, it was nice to have accommodations too.
Both of my parents did their part in broadening my world so that when people talked to me, it wasn’t all about medical procedures and activities in isolation. My father used a kiddie carrier, this allowed me to see over his shoulder as he would run or the family would go sight see, which allowed me to see the world from his six-foot height and hear him talk about the things around us. My mother took me to craft classes and encouraged me to join activities and sent me to stay with cousins over the summer. The great thing about cousins is that they seem to just absorb you into whatever they are doing and disability or no. You’re just one of the crew and you’d be set straight if an attitude adjustment was needed, but boy did we have fun! Over time I would join a few choirs, Girl Scouts, Memory book club, Spanish club, Future Homemakers of America, earn a lapel pin for assistant to the Librarian, join the high school beauty pageant and even won Miss Congeniality.
When quite young around age seven to nine, I had an affinity for ballerinas. Due to my physicality, ballet would not be something I would remotely be good at, but my young self was not so aware. My school friend was taking ballet and I wanted too as well. My parents talked to her parents and came up with the ingenious idea of having my friend give me and her little sister lessons at their home. The day came when we put on a recital for our parents. I was so tickled to wear the ballet outfit my mom made, my father came too, and we got a standing ovation. I was blissfully happy and then hung up my tutu as in my mind I had accomplished being a “ballerina” and now I was off to do something else. Not once did my parents or friends tell me that it was impossible for me to be a true ballerina. As often the case is for young people, for me it was a phase, but a learning experience and one that would be repeated later in high school.
In high school there was a friend who knew how to twirl the baton. She decided to teach her friends for a small fee. Though I wanted to join, there was no baton small enough for me. I used a stick my father made me using rubber chair leg caps on the ends, but it was not weighted like a true baton. My parents ordered one scaled down for me and I was just so happy to join in and talk the talk and twirl away. Not one girl ever told me a negative word about my lack of skill, though I was never very good because of my arm length. Over 35 years now I still have my baton, the happy memories, and find its good exercise too.
I've so much enjoyed visiting these happy moments of my life and cannot express how very important it is to live the life you were given. We are not our disability, though it is a factor of our life. Make memories, friends, learn things, go do and explore!
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