Cerebral Palsy adulthood

A few days ago I was asked to support yet another Cerebral Palsy campaign aimed to bring more awareness to pediatric care.  I applaud causes like this- I'm pretty open about my own experiences growing up and going through life with CP. This particular one was about T-shirts meant to generate income for treatment of prematurely born babies. More power to people who decide to put something like this together and do something for others. I hate it when after a sentence acknowledging someone's creativity, hard work and kind heart a "but" comes along, but here's mine. I'm really concerned with Cerebral Palsy being seen as a childhood only condition. All fundraising efforts that I've heard of all the CP campaigns that I've seen are about children. As if this is a condition that you can magically grow out of when you turn 18 or 21. Like it's something that passes with time. Yes, with the right type of education you can be independent and functional. With rehabilitation you can have more mobility and ability in your limbs. There are perhaps as many palsies as there are those who have it, because everyone's is a personal, irreplicable story. With the right kind of approach you can limit how it effects you. But you never stop having Cerebral Palsy. It sees to be that with all the resource, time, money and effort (as it should) focused on children and babies, beating CP, combating CP, eliminating CP or however else you may see it phrased, the expectation is that it will somehow go away if you work hard enough. And if you would evaluate the number of resources and literature available about this condition you'd indeed assume that it's all about children. Part of it isn't hard to understand. A lot of non profits, campaigns and fund raisers are started by parents. Parents who don't have the right resources who colloquially speaking are "pissed off" that their child was placed in this condition and want to give them every opportunity as they grow. The interest dies off perhaps somewhere between high school and college, maybe when the kids themselves emerge as people with their own ambition no longer wanting to be seen as a cause. On the other hand- we must admit, babies are cute. Kids at harm, hoping for a better tomorrow, to be able, to be normal speak to many people wanting to make a difference. My concern is that they will see CP as "preventable" or "curable" with big enough of a push. And I have to say, having the same condition I've had 20, 25, 35 years ago I don't see a lot of therapy, information, networking, treatment options for people like me. When you think CP you think- babies- when you think of adults with disability- a horrific injury comes to mid. It starts with the condition's name - in Polish it translates as "children's palsy of the brain". It is to mean of course to indicate that you get is as a child, but through its' name it remains forever linked to childhood.

When I visited Poland in 2007 I wanted to plan for a knee surgery I skipped on when I was a child. The spasticity got to me and I wanted some more movement. We dedicated quite a few days going through surgeon to surgeon. The regular doctors had no idea what to do with me with one famously telling me to have my legs ampuated. It wasn't until I met up with my childhood doctor that she pointed us in the right direction. A man who operates on CP children, understands spasticity, knows CP and focuses only on that. I was planning on returning the next year to have it done, but immigration situation that wasn't resolved until much later prevented me from taking that risk. You'd think that United Cerebral Palsy would be a great starting point for someone like me, right? Turns out, despite it's name it's actually a general disability focused organizations. Those interested in CP causes may feel misled. Famously, there was a campaign a few years ago to have UCP drop its name. As an established brand they were of course not willing to do it, but you can't blame those mothers of CP children who felt donors and grant makers may feel that they're supporting an actual Cerebral Palsy cause. I'm as spastic as I always have been, with some aches, pains and stiffnesses setting in and later life. But I have less support. One of my Directors who I lured to my Foundation told me that she was excited we didn't focus on or singled out children. Because- she reasoned - as bad it is to grow up with a disability, kids usually have parents to guide them along and families around them. Adults are often left to fend for themselves.