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Joan and all, I want to thank you for taking the time to respond to my post about the role of the patient as an advocate for their community on issues affecting their disease. I appreciate and agreee with you Joan, that we are the ones who are best equipped to tell about what life is like for us and, by extension, for others with different but equally devastating diseases. As you say, we did not start the stemcell wars nor did we draw up the rules of engagement, which seem to lie for Doerflinger and his ilk somewhere to the other side of outright lies. But that perhaps is the difference between people who feel a periodic need to check in with themselves to make sure their position is solid, and those whose zealotry makes them such "true believers" that they, as you say, would stop at nothing to impose their views on everyone else. The issue of the legitimacy of patients as advocates was as much self-doubt (I hope - lol) as a question that occured to me on a theoretical level, and I brought I it up with with several fellow PWP. After posting the "timely reminder," I had a chance speak with none other than the George Washington of PD patient advocacy, Joan Samuelson. She had an interesting perspective on the whole question and had obviously thought about it. Summing it up, she said that just as patients use denial in a positive way to endure their disease day to day, to protect themselves emotionally from the full psychological impact of their disability, so the rest of the world shields itself through denial about our plight to avoid being overwhelmed by their own fears and anxieties about diseases like Parkinson's and Alzheimer's and ALS. So we, the patient population, sometimes have to break through the comfort of our protective denial in order to describe and show what this disease is really like and thereby influence public policy. And that is not propaganda, that is forcing those who make our laws to see fully what it will truly mean when they vote yes or no on public funding for research etc. It is, as she likes to say, the power of our personal story, and each of us was handed that power when we were handed our diagnosis. And that got me thinking about all of the remarkably conservative members of congress who have come to the side of supporting stem cell research and somatic cell nuclear transfer. Orrin Hatch, Connie Mack, Arlen Specter, Nancy Reagan, Thad Cochran, the late Strom Thurmond, etc. In all those cases you'll find that someone they care about persoasnlly or a close relative, suffers from a chronic illness like diabetes or ALS or Parkinson's. It was only when they were forced by the presence of someone close to them to break through the comfort of their denial about the scope and the tragedy of chronic illness that they took another look at the question of the necessity for funding things like the Parkinson's Research Agenda or the doubling of the NIH budget or support for stem cell research. In a way, people with Parkinson's and other chronic illnesses who choose to come out of their homes and make themselves visible serve as the equivalent of a daughter or mother or spouse or nephew of lawmakers who do not have close relatives or friends with a chronic illness. Our appearance before their committees, or in public places, serves as a "timely reminder" which can wake them up and force them to confront the true cost, both to those who are ill and to the government which must support an increasingly disabled population, of illnesses such as ours. So whether it's in the halls of Congress and the State Houses, or simply going to the grocery store, we serve to remind people that chronic illness cannot, and will not, be ignored. Visibility, even at its most basic level like standing at a checkout counter and fumbling for change, is both a necessary and a legitimate mechanism for educating the public as well as those who make our laws, about the true nature of chronic disease. Thanks to all who put in their two cents on this issue. It is important to check in and get the perspectives of those who share our disease. It keeps things fresh, and forces us to think from different angles. Thanks again, 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