ROUND TWO: What CP Parents Are For (Part A)

In the course of trying to get to know some our CP advocacy/ education/ fundraising orgs over the past several months, I've been making mental notes about their conceptions of the role of parents. What do they think CP parents are for, I've wondered? Their answers, I believe, could hold keys to how swiftly or slowly we all move in the direction of blasting CP.

My curiosity was piqued last fall when I revisited United Cerebral Palsy (UCP) for the first time in years. I had come back -- I should disclose from the get-go -- with low expectations. My preconceived notion was that there wasn't much for us there. To my surprise, though, I came across all kinds of good stuff, some of which set me off in interesting new directions. It struck me as an improved UCP. For the most part.

A few things still bugged me: 

• I found the site hard to navigate. I remember wondering: Is there a section tailored to parents and what they'd want to know? What kind of maze must one walk through to get there? To this day, I don't get why there's not a straightforward connection from UCP's home page to My Child Without Limits.

• I saw signs of both a "push" mentality and an outmoded view of expertise. UCP came off as if it authoritatively knew what was important and had -- once and for all -- rounded up the answers and passed them on to us (uninitiated and passive) consumers. 

• Please refer to your local affiliate. Headquarters seemed to go out of its way to avoid having to interact with parents. I personally found customer service `a la UCP to be anything but warm and fuzzy. 

An overarching impression was that UCP-National didn't need anything from me or my daughter. Which I found offensive. Why wouldn't our experience matter? Why didn't they see my daughter in her particularity, or care particularly about her? It made no sense to me on any level. ('specially after having come from the business world, where a P&G, for example, goes to great lengths to understand its customers and prospects in context, or where Japanese companies have always have done the same) I concluded at the time that UCP viewed me -- to the extent that it saw me at all -- as nothing more than a donor or voter to be. 

That was close to a year ago. Now I see things differently. My views are more nuanced. I appreciate more of what UCP's doing and where it's coming from. 

But I have started seeing other organizations. Namely: Children's Neurobiological Solutions Foundation. Let's Cure CP. Reaching for the Stars. CP Daily Living. I hesitate to lump the four together. Also, I'm reluctant to generalize about the nature of their work, what they believe, and -- to the main point of this post -- how they view CP parents. I will venture to say, though, that the narrative they're each in the midst of creating and telling seems to be one and the same. 

It goes more or less like this: 

Signs are pointing to the possibilities that CP may someday be preventable, treatable, and even curable. It'll all ride on the quantity and quality of work we can collectively pull out of certain smart folks working in certain scientific and medical fields. Those folks, however, aren't being adequately funded. In response -- in the words of Michele at CP Daily Living -- "the US cerebral palsy community is working hard to organize and improve financial support..." 

Where do we CP parents fit into that equation? What are the options for helping implied? 

It follows that we can: get educated about what's happening...spread the word...donate and/ or raise monies...become politically involved.

Unlike UCP, these other four organizations are headed up by parents of kids with CP.  And surely they differ from UCP in other ways  -- in their respective means and ends, their degrees of focus on CP, their relative emphases on research, etc. If push came to shove, I'd guess that they'd claim to be more specifically in touch with CP parents' needs and wants than UCP, and that they're the truer champions of parents' interests. Reaching for the Stars (RFTS) goes so far as to describe itself as "the only global, parent-led, pediatric nonprofit Cerebral Palsy foundation."

Nevertheless, I'd say the majority of their "asks" of parents still revolve around raising funds for research. The conceptions they have of the role of parents in our fight aren't substantively very different than UCP's.

Where am I going with this?

I'm not saying it'd hurt to have a lot more loot ($) coming into the CP sphere. No doubt that could help a great deal. Lest ours become a "we're handcuffed without it" ($) movement, however, I'd like to suggest that there are other things our advocacy/ education/ fundraising orgs could be doing in parallel. Those other things have to do with taking an even more expansive view of what we smart parents have to offer and then smartly putting us to work. Our large numbers + our gumption + today's social technologies give us unprecedented opportunities to get things done -- at relatively low costs -- and we all should be taking fuller advantage.

More along these lines to follow.