I have been studying the US and international CP community intensely over the last year. I have read CP literature and I have spoken with doctors, leaders of CP organizations, individuals with CP and many parents. While analyzing the gaps in our US CP community advocacy, I have repeatedly been told that the different presentations of CP may explain the recent historical lack of fervor in CP advocacy efforts.
Could it really be true that the CP community cannot rally around a CP diagnosis and advocate with the same unity as other disease communities just because CP has many different presentations? I really question the validity of this. Yes, to a degree the way that CP affects the individual and a family may influence their desire and ability to advocate. Some with mild CP may not care to advocate, and perhaps those families with children who require more complex attention, may feel too exhausted too advocate. This is understandable. Not everyone is going to be able to advocate, and certainly not all of the time.
However, if we look further, I propose that the CP community isn’t so different from other communities doing advocacy work. Many diseases have multiple mechanisms of origin/causation and presentations of their conditions yet rally around a generic diagnosis. Cancer is one obvious example. It affects individuals in thousands of different ways ranging from rapidly terminal to easily curable. Still we have general cancer organizations such as the American Cancer Society and as the effort has gained further support, more cancer organizations focusing on cancer subtypes have emerged. We may see the same thing happen with CP one day.
How about Traumatic Brain Injury (TBI)? This is another well-organized and well-supported group (further enhanced by military support). TBI likens easily to the CP community. TBI, like CP, is a catchall term with even more variability than CP. In TBI the presentation involves any part of the brain, and has multiple levels of severity from a mild concussion to severe TBI that may lead to death. Still, this group is effective in their advocacy efforts and well supported financially.
I bring this up so that we don’t forget the possibilities and the potential power of our community. Sure, we may find down the road that we have sub-types of CP, but for now, the more we can gather, organize, and have our population studied and financially supported, the more we can learn. In order to inspire change through donations from the private sector, or to affect policy decisions and funding at a national level, we need to make some noise. Our silence tells the world that we are satisfied with our current models, support, and research. This is not the case.
When you see me sharing general information about cerebral palsy or opportunities to give to our community, call a political leader, or send an e-mail, join me in spreading the word and propelling our community forward. I see many of you starting to do this. I feel the momentum building and the organization of our community emerging. Let’s continue to join together and focus on what we have in common so that we can create change.
-Michele, CP Daily Living