ROUND THREE: What CP Parents Are For (Part B)

Maybe you've already associated this post's title with Wendell Berry's "What Are People For?" 

I got around to reading his (old?) 1990 essay about a month ago. It'd been on my radar for years and, well, Mr. Berry didn't disappoint. But he also didn't exactly answer his own question like I had hoped and having read the piece hasn't made answering mine -- "What are CP parents for?" -- any easier. 

No biggie, I suppose. I've read enough of his other writings to know that a major part of his answer would revolve around...

WORK. 

More specifically: I know he believes that people are for doing "the inescapably necessary work" of caring for their communities. They're (we're) for doing the kind of work that requires, among other things, a deep appreciation of context and much giving of intelligence, affection, and skill. 

Not coincidentally, I believe that good work -- think TLC, and lots of it -- is just what our CP community needs. 

What kinds of work? 

Brain work. Knowledge work. In 57 varieties.

I'm talking about specialized work that requires the specific expertise of people who probably already think of themselves as knowledge workers, and also about generalized work; work that could be performed by most people, many of whom probably wouldn't consider themselves knowledge workers. I think of regular old parents, for example, whose greatest hidden value may lie in the things we learn in the daily context of raising kids with CP.

Two things we CP parents have going for us are that (1) there are lots and lots of us, and (2) we have what matters most: passion, the desire to help -- in many cases without expectation of extrinsic rewards. 

Surely those aren't being used to their fullest. 

If we CP parents are for doing good work, it follows that leaders of CP-facing organizations have an opportunity -- maybe even an obligation -- to put us to work. According to many leading thinkers, that's management's JOB ONE anyhow. It's no longer, they say, about being the big brain of the organization and cascading your brilliance down and out to less-informed, less-wise others. That no longer flies.

What does fly has a lot more to do with capturing the participation of passionate people. (Here I'm talking broadly about tapping into the expertise, creativity, energy that lies outside of your organization, but the same idea applies to the people within it.) This is part of the new formula for success, the new way to solve new problems as well as find new solutions to old problems. It's a way to make your organization more indispensable and to amplify its impact.

There could be other more subtle benefits to putting CP parents to work, as well.

When you give people opportunities to chip in, you empower them. You give them chances to develop their talents. You increase the likelihood that good ideas will emerge. You build and inspire a sense of community. You bestow dignity. (Wendell Berry: "Our greatest dignity is in employment.") At a time in which many CP parents are financially tapped out and unable to contribute cash to the cause, and where opportunities to make a difference via the political process are limited, those sorts of things may mean even more. 

SO: 

To the leaders of CP-related organizations of all stripes, in all sectors, the opportunity to tap into what CP parents have to offer is yours. If you choose to ignore it, I wish you the best. I would also hope -- and I would bet -- that others will eventually see and seize it. 

As NiloferMerchant, the Jane Bond of Innovation, observed: "Doing work these days no longer requires a badge and permit. Anyone -- without preapproval or vetting or criteria -- will create and contribute." CP parents will take matters in their own hands with or without you. More and more of us are realizing that it's not just the smart people over there who can bring about progress. Reaching for theStars and Children's Neurobiolgical Solutions didn't to my knowledge ask United Cerebral Palsy (UCP) for permission before starting their own organizations. They saw unmet needs and just did it. 

That's the wave of the present. It's what the Mercers, the Deloittes, the McKinseys, the Gartners, and others in the management consultancy world have been preaching for some time. Their messages are readily available for consideration.

ROUND ONE: It's About Time. And Space.

As far as goals go, "Knock Out CP" is a whopper. It's also about as vague as can be. But you have to start somewhere, and, recalling (as I hardly ever do) the Austrian economist and philosopher Ludwig Von Mises, at least it's ACTIONABLE in that it meets these conditions for human action. There's:

1. a sense of dissatisfaction with the way things are; 
2. an image of a better, more suitable set of conditions; 
3. the expectation that purposeful action will make a difference.

Human Action: A Treatise on Economics was published in 1949. Coincidentally, that's the same year United Cerebral Palsy (UCP) was born as a national organization -- from humble beginnings; thanks to the efforts of families dissatisfied with their lack of options and wanting to dramatically improve the quality of life for children with CP. Today there are many more and many different types of organizations, worldwide, driven by similar missions. 

They'd all like to see CP go down for the count.

Generally speaking, each is in one way or another pursuing CHANGE for the better. Implicit are the notions that (a) work has to be done to produce change, and (b) work takes time. Time is a dimension of all change.

My own particular time-sense tells that progress is being made on the CP front, but at a SNAIL'S PACE. I feel impatient. So much so that I can't wait for the Big Summer CP Conference or the next Global Get-Together. (both nonspecified) It'll take light years for the President's BRAIN initiative to get funded and bear fruit. 

I want change to happen faster, i.e., in a much shorter amount of time.

Of course, my perceptions are colored by what I want for my daughter. I want her to thrive. I want her to exult. I want her to feel better. I want her to laugh more. I want her to be able to more fully participate...

PRONTO.

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Expressing the changes we want to see on a personal, human scale makes them more understandable; it's where the focus properly belongs. Along those lines, I believe it's our responsibility as parents to keep our perspectives, needs, and senses of urgency front and center. The goal should be to "pull" helpful goods and services to our kids, and that's the way to start. 

We need to get the various provider organizations out there moving in tune with us.

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I'm inspired: by the enterprise and energy, by the research findings, by the roadmaps and visions. But I've also been around the block some. 

Take the inspiring visions: 

One problem with them is that they're COARSE-GRAINED. In other words, they "identify some factors of interest but ignore many details in the process." (David K. Hurst) Even relatively simpler, standalone projects typically take longer than plans anticipate (doesn't this ring true in your experience?) due to unforeseen issues on the ground, and --

Our CP-related projects-to-come aren't likely to be simple. They won't even be complicated, in the ways, say, construction or IT projects often are. They'll continue to be complex. They'll entail lots of uncertainty. Stem cell research looks promising, for example, but it may be many years before we know whether or not transplantation is even safe.*

SO WHAT? 

We're probably way underestimating the amount of ground we need to cover, i.e., the distance or space we still need to traverse. (Space is another dimension of all change.) That means we should be doing a heck of a lot more work now. There's a Planetary Powwow scheduled for 2014? We need to move it up. Can we acclerate the planning phase? Can we get crackin' in advance on the work that's likely to follow? Can we make the need to meet...moot?

These are management matters. 

I personally want to see CP knocked for a loop within one (1) calendar year. Attaching that timeframe to it is my attempt to influence, i.e., manage, things in that direction. (Whether or not it's a smart attempt remains to be seen.) It's also SPECIFIC. 

Conjecturing, on the other hand, that there's "lots and lots of work to be done" is UN-SPECIFIC. What work? How much? What are the resource requirements? Our answers to questions like these will determine the kinds of results we get.

Can leading management thinkers help in all of this? 

I hope so.

*To say nothing of what Wendell Berry wrote -- something I always keep in mind: “We live in a world famous for its ability both to surprise us and to deceive us.” 

A Tale of Two Hope Machines, 3.1

Why all the attention paid in the previous post to the use of the word “hope?”

Language counts. 

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Dear Red Treehouse and UCP:

Somewhere Wendell Berry wrote that abstract, ‘objective,’ impersonal, dispassionate language...cannot replace, and it cannot become, the language of familiarity, reverence, and affection by which things of value ultimately are protected.
 

It’s a big job you two have taken on, and the language you use lets us know what you make of its attendant challenges and opportunities. It reveals how passionate you are. (or aren't)  Words don't tell the whole story, of course, but they “clue us in” as to whether or not we should invest: our monies, our participation, our emotions…

Hope may be the most emotionally charged word on your respective sites. Before we get ours up, we want to have some idea of how committed you are to stewarding it. Are you up to the task?

We sincerely hope so.