When the Cerebral Posse first met in March of 2014 several great things happened, but there were two big takeaways for me that evening:
The first, I had something confirmed for me; that people with disabilities, and in this particular case, people with cerebral palsy, don’t commune on a regular, consistent basis. At the start of the evening all of us acknowledged how strange this was. None of us had ever been around this many people with CP before. This was 2014 and there were six of us ranging in age from our early twenties to our mid-forties. This was good for me to hear and important for all of us to know. It’s something we need to make the larger public aware of; that very first meeting was the start of a very important paradigm shift. It brought to mind a Margaret Meade quote – Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.
The second, as we sat around the table sharing our personal histories with various surgeries, physical therapy and experiences within the medical community, I noticed another common thread emerging. Each one of us had been given a different definition and reason for their cerebral palsy from their parents. Our parents had probably passed this story down from an explanation given to them by doctors, and these various stories had become a huge part of each of our personal narratives. The only problem was, none of us had explored much about our CP beyond this initial explanation. I don’t think many people do. Until now.
Just a few days ago, I found a letter my mother had written dated May 4, a day before my birthday. In the top right hand corner of the first page, she had written down the time; 8pm, roughly nine hours before I was born. I haven’t been able to bring myself to read the letter yet. I don’t have a good reason as to why. It’s true that I’ve heard that the past can’t hurt me, but something in me is afraid of what I might find.
It is the goal of the various posses to connect with individuals in the CP community, and to empower those individuals to collectively engage with members of the artistic, disability and medical communities. We feel this simple act of engagement can lead to a change of attitude, both for people with CP and the people they come into contact with. It’s no small feat and it does take practice, but it’s easier than one may realize. Investigation into the unknown can be scary and fraught with peril, but the benefits of knowledge, greater awareness and potential relief that can grow out of that sense of curiosity, I feel, far outweigh the difficulties.
I think I’ll go read that letter now…