The only way to get people and the government to do the right thing is to stand up to them. Every kid learns that when you stand up to bullies, they get afraid and back down. For the government to be afraid of ME/CFS patients, it’s going to take a lot of organization and thousands of people rallying against them. It can be done. But until there is organized action, nothing will change.
Women versus men
I believe 25 years ago had women been the first to get HIV, ACT UP would never had occurred. Most women are taught to be compliant and sweet and reasonable and fair, but it’s going to take cajones to make change happen for ME/CFS.
“So many people have forgotten, or never knew what it was like. We must never let anyone forget that no one, and I mean no one, wanted to help dying faggots. Senator Edward Kennedy described it in 2006 as 'the appalling indifference to the suffering of so many.' Ronald Reagan had made it very clear that he was 'irrevocably opposed' to anything to do with homosexuality. It would be seven years into his reign before he even said the word 'AIDS' out loud, by which time almost every gay man in the entire world who'd had sex with another man had been exposed to the virus. During this entire time his government issued not one single health warning, not one single word of caution. Who cares if a faggot dies? I believe that Ronald Reagan is responsible for more deaths than Adolf Hitler. This is not hyperbole. This is fact.
“These are just a few of the things ACT UP did to make the world pay attention: We invaded the offices of drug companies and scientific laboratories and chained ourselves to the desks of those in charge. We chained ourselves to the trucks trying to deliver a drug company's products. We liberally poured buckets of fake blood in public places. We closed the tunnels and bridges of New York and San Francisco. Our Catholic kids stormed St. Patrick's at Sunday Mass and spit out Cardinal O'Connor's host. We tossed the ashes from dead bodies from their urns on to the White House lawn. We draped a gigantic condom over Jesse Helms' house. We infiltrated the floor of the New York Stock Exchange for the first time in its history so we could confetti the place with flyers urging the brokers to 'SELL WELLCOME.'
“We boarded ourselves up inside Burroughs-Wellcome—now named GlaxoSmithKline—which owns AZT, in Research Triangle so they had to blast us out. We had regular demonstrations—die-ins we called them—at the Food and Drug Administration and the National Institutes of Health, at City Halls, at the White House, in the halls of Congress and at government buildings everywhere, starting with our first demonstration on Wall Street, where crowds of us lay flat on the ground with our arms crossed over our chests or holding cardboard tombstones until the cops had to cart us away by the vans-full.
“And always, we went after the New York Times for their shockingly, tragically inept reporting of this plague. We plastered this city with tens of thousands of stickers reading, 'Gina Kolata of the New York Times is the worst AIDS reporter in America.' We picketed the Fifth Avenue home of the publisher of the Times, one Arthur Sulzberger. We picketed everywhere. You name a gross impediment and we picketed there, from our historic 24-hour round-the-clock-for-seven-days-and-nights picket of Sloan Kettering to another hateful murderer, our closeted mayor Edward I. Koch. Three thousand of us picketed that monster at City Hall.
“Our 'chief murderer,' Dr. Fauci, became our hero when he opened the doors at NIH and let us in—a historic moment and a historic gesture. Soon we were on the very committees we had picketed, and soon we were making the most important decisions for treating our own bodies. We redesigned the whole system of clinical trials that is in use to this day for every major illness. And, of course, we got those drugs out. And the FDA approval for a new drug that once took an average of 7-12 years can now be had in less than one. ACT UP did all this.
“Dr. Fauci now tells the world that modern medicine can be divided into two periods. Before us and after us. 'ACT UP put medicine back in the hands of the patients, which is where it belongs,' he said to The New Yorker.
“Well, the evil things that made me angry then still make me angry now. I keep asking around, doesn't anything make you angry, too? Doesn't anything make anyone angry? Or are we back in 1981, surrounded and suffocated by people as uninterested in saving their lives as so many of us were in 1981. I made a speech and wrote a little book called The Tragedy of Today's Gays about all this. That was about two years ago. Lots of applause. Lots of thanks. No action.
“We are not crumbs! We should not accept crumbs! We must not accept crumbs! There is not one single candidate running for public office anywhere that deserves our support. Not one. Every day they vote against us in increasingly brutal fashion. I will not vote for a one of them and neither should you. To vote for any one of them, to lend any one of them your support, is to collude with them in their utter disdain for us. And we must let every single one of them know that we will not support them. Perhaps it will win them more votes, that faggots won't support them, but at least we will have our self-respect. And, I predict, the respect of many others who have long wondered why we allow ourselves to be treated so brutally year after year after year, as they take away our manhood, our womanhood, our personhood. There is not one single one of them, candidate or major public figure, that, given half a chance, would not sell us down the river….
“[AIDS researcher] Mark Harrington said to me last week that one of the great things about ACT UP was that it made us proud to be gay. Our activism came out of love. Our activism came out of our love for each other as we tried to take care of each other, and to keep each other alive.
“I also know that any organization that we start now must be an army. You have resisted this word in the past. Perhaps now that the man in charge of America's army is calling you immoral you won't resist it army anymore. We must field an organized army with elected leaders and a chain of command. It must be a gay army with gay leaders fighting for gay people under a gay flag, in gay battle formations against our common enemies, uncontaminated by any fear of offending or by any sense that this might not be the time to say what we really need to say.
“Why do I think we need the word 'army'? Because it connotes strength and discipline, which we desperately need to convey. Because it scares people, and God knows nobody is all that scared of us. Which they were for a while. The drug companies were afraid of us. The NIH and FDA were afraid of us. Closeted everybodies were afraid of us. No more. Our days of being democratic to a flaw at those endless meetings must cease. It has been a painful lesson to learn but democracy does not protect us. Unity does. United commitment to confront our many foes….
“We all think we have straight friends. We think if we have straight friends then everything is OK. But these friends are not protesting with us. They aren’t fighting with us. They enjoy the freedoms they have with their marriages and all their fringe benefits. Yes, they like us but are they going to sacrifice any of their freedoms to get us ours? Of course not. And what’s more we should not expect them to. Even though it sure would be nice; we’ve fought for them and theirs often enough.
“ACT UP is the most successful grass roots organization that ever lived. Period. There never was, never has been one more successful that has achieved as much as we. We did it before. We can do it again. But to be successful, activism must be practiced every day. By a lot of people. It made us proud once. It united us.
“I have asked Eric to convey the main difference of what is available to us now that we did not have to work with in the past: “In the age of the Internet we can do much of what we did in our meetings and on the streets, on the world wide web. “The information technology available today could help end the need for those endless meetings. “Creating a blog could, in fact, incorporate even more voices and varieties of opinions and ideas than any meeting ever could. “Where ACT UP once had chapters in many cities, we could now involve thousands more via simple list-serves and blogs. We can draw in students and schools and colleges all over the world. It is the young we have to get to once again. Creating a blog would allow for expression and refinement of ideas and policies, like a Queer Justice League for denouncing our enemies.
A well organized website could function as an electronic clearing house for sharing information, for posting problems, for demanding solutions, for developing and communicating action plans. List-serves and a website could coordinate grassroots organizing and mobilize phone, e-mail and physical zaps or actions. They could also be used to spotlight homophobic actions, articles, movies and TV, and laws. “Why aren’t we fighting fire with fire? Where is our radical gay left think tank? We need our own ‘700 Club’ and our own talk radio show. Developing such gay content programming for the LOGO or Here Networks or for streaming on-line is completely possible today. Why are all the shows our community is producing about fashion, decorating or just another gay soap?”