This is to everyone, and a special hi to Jackie! How nice to be another "new' member with you. And hi to Carey and Peggy... I'm so glad that your always-thoughtful input has joined in with this dialogue. You, of course, are so right about proposing positive solutions, as opposed to complaining.
Your point is interesting about "advocate" versus "activist." I am pulled in both directions. My activist side wants to do something on a very large scale to address the welders' needs and support them publicly, and to take on the PD doctors who are selling the patient popoulation down the river with their research bought by the welding tools industry, in order to make millions discounting the welders' claims.
On a "tamer" level," working within the system is certainly a possibility, in so far as to creating a resource "portal" for the PD community, newly diagnosed and otherwise, in the form of a website, or a new organization that would serve specifically as an entry portal to the complicated maze of PD groups and services. That comes from the part of me that is a social worker who loves connecting others to resources. Would you mind mentioning this to folks in Atlanta if you all brainstorm?? Fortunately, and unfortunately, my family leaves for our annual 2-weeks on Cape Cod Friday night.
A coalition with a mission-what are you imagining, mission-wise? oops-have to go. Later. Leonore
Quote:
Originally Posted by jackiehc
I remember when I was first diagnosed with PD 10 years ago, I could not for the life of me understand why there were so many PD organizations. At the time, I couldn't tell how they differentiated themselves. I had high hopes for the NPF-PDF merger but we all know how that turned out.
Having worked for non-profit environmental orgs for 20 years before going on disability, I take exception with some of the generalizations that some folks have made about non-profits.
1) If someone is going to work full-time (or more) on an issue, I think that they have the right to be paid for that work (but salaries don't have to be exorbitant). After all, devoting themselves to the issue means they can't do something else, and unless you are independently wealthy or somehow making it on Social Security/disability, everyone needs income. Society doesn't seem to have a problem with the notion of paying someone to be a receptionist or a communications manager or web designer if they work at IBM or Ford Motor Co. Those jobs are just as necessary and as challenging at non-profits.
If organizations have employees rather than all volunteers, there is legal oversight and recourse if someone is not doing their job. Some volunteers have a tendency to feel able to "blow off" responsbilities because they don't feel obligated to follow through.
2) If there are paid employees, there can and should be job descriptions and individuals should be chosen to suit that position. With volunteers only, you have to take what you get.
3) I don't think there can ever be a PD org comprised solely of Parkies (sorry if that term offends anyone) and care partners. Our lives are simply too chaotic for us to do it alone, and let's face it -- this is a progressive disease.
HOWEVER, I do think there is a way to improve the current situation, although I haven't quite figured out what the alternative might be.
A couple of "models" or "mindsets" to consider:
- in the disability rights movement, their motto is "Nothing about us without us." In other words, we need to be involved in organizational decisionmaking at all levels.
- a coalition with a tight mission statement might be more palatable to the orgs than another org. I am thinking of a couple of coalitions with which I've been involved (see Health Care Without Harm and the Collaborative on Health and the Environment (I can't post links because I'm new, but if you want to learn more, just Google them). These are meritocracies (those who want to do the work do it and thus become decisionmakers). I know of a couple of foundations that have been interested in funding such efforts.
= I spent many years opposing things (garbage incineration, whale hunting, etc.) I have found that it is much easier to get people on your side if you turn that opposition into a proposition (e.g., I am FOR recycling, reduction of packaging, and composting of food waste, as alternatives to burning garbage.) It's worked for me, anyway. No one thing works for everyone.
I believe that each of us needs to decide whether we are going to focus on being activists, or advocates. (My working definitions are: activists are willing to take non-violent action to change "the system" if necessary; advocates worth within the system. BOTH ARE NECESSARY. It's just a matter of deciding what you are willing to do.
Maybe this has already been suggested and I just missed it, but I'd like to propose that those of us rabblerousers who are interested in discussing this further and are also going to YOPN rendezvous in Atlanta. What do you all think?
Sorry for the lengthy posting!
Jackie
|