Cerebral Palsy: An umbrella term unifying our community

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

2 replies
  1. Anonymous
    Anonymous says:

    You are really on the right track here. We are not satisfied with current models, support or research as it is now done. As parents and other interested parties, we can make a huge difference. Way to go!

  2. nico
    nico says:

    There is no real reason why CP couldn’t be an empowered, self-driven movement the way most cancer movements are, most Multiple Sclerosis movements are, et cetera. The main problem is a self-perpetuating situation of ‘it hasn’t been done, so since it hasn’t been done that must mean it’s too hard to do, so we won’t do it, because obviously if others have not already done it it means we wouldn’t succeed at it either.’ Which, of course, is crap. All successful movements have to start somewhere, and most movements like this have to be jump-started, metaphorically shocked / zapped in to existence by a small collection of extremely determined individuals. The Nerves Of Us, the in-process documentary film you know I lead, is geared towards launching such a movement (physically, not online but eventually with actual places for adults to go and be activist-y in) led by and intended for adults with Spasticity (muscle-tightness) rather than CP in general or CP of all ages– but Nerves is only one thing intended to jump-start one specific _part_ of what should be a much wider movement gathering pace. So Nerves will jump-start the adults part, and other determined individuals will start the kids part and the all-CP parts— but some of us have to finally DO something, instead of just talking about it all over the place as has been the case for the past century-plus.

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