When I was a senior in high school, I was in a kick ass creative writing class. The woman who taught it had also taught me junior English and I liked her immensely. In fact, thanks to Facebook, we are still in touch today. We have always had a nice connection. One of the things I thoroughly enjoyed about this particular class was the interesting assignments that we were given to write about. Every student had started a journal at the beginning of the semester, and twice a week or so, we were given a new topic to explore in our writing. One such topic resonated with me to such an extent that I remember it clearly more than 30 years later.
As we entered class one particular morning, the message on the blackboard told us to start writing in our journals by completing the following sentence and explaining why.
“I would hate you somewhat less if…”
It was the perfect opportunity to write about all the frustration caused by my disability.
Back then, my cerebral palsy was a bully, tough and mean, that tangled with my body and caused me pain and spasm. But it affected me so much more than physically. It was only because I was a wheelchair user that I could not fit under any of the tables in the cafeteria, so I sat by myself, learning my wheelchair against a brick pillar that was the only thing wide enough to accommodate my mode of transportation.
More painful to my heart, though, was my perceived idea that my cerebral palsy caused my isolation. Like all teenagers, I wanted to fit in, have a place among the “cool” crowd. I was lonely, and I longed to belong. But most of my peers at the time magnified my differences, and on numerous occasions, specific things happened that made me believe how much I wasn’t one of “them.” That is what kids do sometimes. Cerebral palsy sneered and hissed.
Late at night it always seemed to whisper:
“You can’t climb a tree like most people. You can’t even drive. I’ll always make you different.”
A few months after I started high school, I got involved in sports. I lifted weights. I worked out hard. Pushing my wheelchair quickly around the track gave me a sense of power and control. It was only over time I realized that I would not be excelling in sports if I didn’t have a disability.
Cerebral palsy was watching closely, taking it all in, but stayed quiet.
In my first job after college, I learned some advocacy skills. It became clear to me soon after that I could use those skills to not only help myself but be a voice for others with disabilities who could not tell their stories on their own. On numerous occasions, I had the opportunity to go to the state capitol and give testimony to senators and representatives about programs that would be beneficial for those of us with disabilities.
A few years later, I was lucky enough to be on the state committee that designed a program that enabled people with disabilities to work without losing their eligibility for the state to pay their caregivers. That program started in 2007 and was a big win for the disability community in Kansas. At one point I met the governor, by myself, and the two of us had a conversation about how important it was for people with disabilities to live in the community with the support of caregivers, instead of living in nursing homes. She wholeheartedly agreed with me.
Cerebral palsy moved closer to me and seemed to be impressed.
As the years have gone by I have learned to embrace my disability instead of fighting against it. In the winter, when the cold weather makes my spasms and stiffness worse, I stay in bed, under my electric blanket, about an hour longer than usual. The extra time helps me move better all day.
Research has taught me that people with cerebral palsy tend to have good memories. On various occasions, when I am talking to friends, I can recall good experiences we had many years before that they had since forgotten. Seeing an unexpected smile when that happens always makes my day.
I wouldn’t dance, or see the world in the same way that I do without my disability being what it is. And I also wouldn’t have my service dog. I literally could not imagine my life without her. These days, cerebral palsy takes my hand, and we work together.
I see my disability as a buddy instead of a bully.
Late at night it still whispers “I’ll always make you different.”
And I hope to God it is true.