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Late last night I was questioning the legitimacy of using patients to influence health policy decisions in Washington and in the states. I have a talk to give before a group of college undergraduates heading for careers in cell biology who are gathering to discuss, among other things, the stem cell debate. I am the patient advocate representative on the stem cell panel. I had been thinking about what I wanted to talk about and it occurred to me that perhaps my notion that our side, meaning the pro stem cell side, used propaganda every bit as much as Senator Brownback, Richard Doerflinger, and the rest of them. It seemed to me that the emotional power over legislators when confronted with one of us up close, hearing what our life is like, exceeded the value of our actual arguments in favor of stem cell research. There were scientists who could do that without having to parade symptomatic patients telling horrible stories before committee members. Somehow it seemed for a moment to be unfair and too much of a tactic. Later that night I happened to see to a friend from the MGH PD bulletin board online. I IM'd her and sought her opinion. She said many things, all of which were important to me, but the most important thing she said was that our participation in government policymaking, and in simply making the world around us aware of our existence, was not a matter of propaganda but a matter of truth. She said: "They need to see that once you walked unfettered along with all of them. And they should not forget for a moment that they could end up going the same route as you have traveled. Tell them how unfettered you were - remember the dancing." Those words hit home. Of course she was right. Policymakers, and our neighbors and folks in the larger world, DO need to be reminded that "once we walked unfettered along with all of them." And from time to time we need to remember that ourselves. We block out a lot of memories of our old lives and old abillities to be able to endure our suffering with this disease. That is necessary. But every now then we need to rermember that we once lived unfettered in the world. Thanks you my friend. Greg --------------------------------- Do you Yahoo!? ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn Yahoo! SiteBuilder - Free, easy-to-use web site design software