Well, I'm certainly not surprised to see the direction this thread has taken. It has been uplifting and disheartening all at the same time.
I don't have the answers for all the "why" questions that have been raised. While each one does some good things for our community, there are obviously many problems and issues with "our" PD organizations, and I do not have the solutions to them either.
But that doesn't mean that I won't fight, or remain a thorn in their side until they realize that despite our disease, we're not just going to curl up in a ball and go away. They are supposed to be serving us, so I'll do what I can to insure that we make enough noise so that they're reminded of that. Whatever it takes.
While I prefer to do this in a polite, respectful manner, I am also willing to kick down the door and pull my own chair up to the table (as was mentioned earlier) even if it means I'll have to kick that door dozens of times before I finally get it open.
I understand the logistics, issues, and huge obstacles that stand in the way of the organizations merging to become one. It's a massive undertaking in which you will never please everyone, and new organizations will just sprout up yet again due to unhappiness with "one" organization representing us all. So much potential, yet so many impending issues.
Yet, can it be done, and done effectively? Absolutely yes. Each organization has amazing strengths to it. Can you imagine if they all decided to actually work together? Can you imagine the massive impact they could have? I can. And it frustrates me to no end.
You can spend all the time you want coming up with reasons why it "won't" work. Why not spend that time and energy finding reasons why it "can" work? And then, make it happen.
I get tired going into the grocery store and seeing the pink ribbon everywhere, on all the products in the store, in the newspaper and magazine ads, and having the checkout clerk ask me if I want to donate a dollar for breast cancer research. (Which I typically do, by the way.)
I get tired of seeing creative PSA's from countries like Canada (
http://www.youtube.com/watch?v=pN0nS_7qNwQ ) and Europe (
http://www.youtube.com/watch?v=B3IhU87Xptg ) for PD awareness, yet see nothing on a similar scale from the US.
And I get tired of seeing videos like the one I originally posted from Stand Up To Cancer, not because I'm against the cause, but because it frustrates me that "our" PD orgs can't put their petty differences aside long enough to create something as powerful to help raise awareness for our disease. It would certainly benefit them in the long run, just as much as it would benefit us. It makes me so angry that this is evidently too much to ask.
I can hear "our" orgs now: "Actually serve the PD population we're supposed to be representing? Hey, we just published a new book that we mail them for free. What more do these people want?" Gee, thanks for that.
So what's the answer here? To model ourselves after those that have succeeded at what we are trying to do. To look at other activists and see how they have successfully brought about change in their arena, and learn from them. (Act Up for one of many examples.) We will kill ourselves trying to recreate the wheel. So we need to look at those who've accomplished what we want, and utilize their knowledge in our fight. The old saying is: "The squeaky wheel gets the grease." Time to start squeaking!
It's important to remember that we don't just fight for us, but we fight for those that can't due to their disease and the devastation it brings into their lives physically, emotionally, spiritually, and financially. And those that are newly diagnosed every single day. If we still have a voice, some strength and energy, then we have a responsibility to use it to our fullest potential while we are able to. We owe it to our community, to our society, to our disease, to our fellow sufferers, and to ourselves.
Is it hard work, tiring, exhausting, and overwhelming? Yes, but what are the other options? Not good I'm afraid. The "status quo" is not working and it's time for a dramatic change.
I have personally been warned that my speaking out like this will essentially kill my business, PDTalks, Inc. and PDTalks.com. That I will "alienate" the PD community due to my views, and the "powers that be" in the PD world that have the ability to help me make my business a success and "welcome" in this community or not. So be it. This is much bigger than me, or my business. Sadly, they underestimate me. And I truly believe they underestimate all of you as well. Despite having PD, we have a powerful voice. It's time to use it.
This all goes back to my original point:
We've got to change the thinking from "me" to "we". What's it going to take?