"Community in Search of an Identity"
By Mary Fisher
Flying back to New England yesterday was interesting. I've always loved this part of the country and have enjoyed splendid times here. My husband, Brian, and I met and lived in New York. Brian died in 1993 and is buried in New England. It was in New England that I first met Larry Kramer, the founder of ACT-UP, who has since become a great friend. Larry is one of the nation's finest playwrights, and he never fails to make me laugh. I was standing on a stage in New England, substituting for Arthur Ashe who wasn't feeling well, when the announcement came that Arthur had died. I let my mind review all those moments yesterday, flying from Florida where my sons and I moved recently to be nearer family. New England is important territory to me, and you're important people.I want to talk this morning about what it takes to create a community, because I believe the idea of an "AIDS community" is mostly a myth. There is no such beast. Some of us have AIDS; some of us enjoy community. But we'd be hard-pressed to give any kind of definition or meaning to the idea of an "AIDS community." And it's too bad this is true. If ever there was a group in need of community, it's the group represented here this morning: people with AIDS and those who care about us. We would be a community full of suffering and stigma, but also a community full of humor and power. We could be an international community, because the virus has made us so; we could be a supportive community... if we would make us so. The virus has done a marvelous job of finding those who are Black and White, gay and straight, young and old, male and female, African and American. But we've not yet learned to imitate the virus's ability to enroll everyone in a single community.
One of the things that has divided us, historically, is politics. During Bill Clinton's last run for the presidency - 1996 - I was invited to speak at an AIDS-related event in Little Rock, Arkansas. It was an awards night for regional folk who'd made significant contributions to the fight against HIV. The room was packed with social workers, people with AIDS, family members, religious leaders, a few politicians and journalists - in other words, the room was packed with Democrats. Out of deference to me, every speaker had been very discreet never to mention politics or Republicans, until the community awards were being handed out, and the last recipient wanted to talk.
She was a wonderful, elderly public health nurse: bright, quick, tiny, 77-years-old and feisty. And you could hear every politically correct person in that room stop breathing when she reached up, grabbed the mic and said - and I quote - "I've had it with them dumb Republicans."
"For fifteen years," she said, "I've talked to them dumb Republicans. Over and over, I've explained there ain't but three ways you can get AIDS: swap needles or blood, have sex, or get born with it. And, for 15 years, them dumb Republicans been askin', 'But cain't you get it from mosquitoes?"'
She paused for a moment, and then she said: "I'm tellin' y'all tonight that, from now on, I'm gonna' tell 'em, 'Yep, you can get it from mosquitoes - but only in three states: Florida, Louisiana, and Arkansas. 'Cause them's the only places mosquitoes grow so big Republicans can have sex with 'em."'
Of all the stories I've collected while traveling the road to AIDS, this is probably my favorite. I love telling it because it's not only funny; it's important. To develop a community, people need sources of common identity, of shared history. We get this, usually, through stories. Stories give our lives texture and color, pathos and laughter. They make us ashamed or they make us proud, but most of all they make us an "us."
In one of the commentaries on his great story, Roots, the late Alex Haley explained why he had written the book in the first place. He told this story: When African slave ships were bound for the American market, the ship's captains would observe their cargo to see which captive man seemed most like a leader. Then, two or three days at sea, they would take the identified prisoner to the deck where, surrounded by all the other captives, the ship's crew would use red-hot tongs to rip out his tongue, searing his mouth in the process. Slave captains feared revolt. They feared insurrection. But what they feared most was stories - stories that gave the slaves a history, an identity, a sense of value and worth.
And so it is. Without stories, we will have no community; and without community, we will lack a sense of our own value and worth. That's why stories matter.
When first I was diagnosed with HIV in 1991, and when first many of you joined the fight, the AIDS community had its own story. It was a story of mysterious reports and sudden wasting, of an unnoticed community of hemophiliacs whose lives were suddenly being cut short and a previously hidden gay community whose fabric and texture was suddenly, brutally, being exposed by AIDS. Headlines told stories of families making three discoveries simultaneously: their brothers were gay, their brothers were sick, their brothers were dying.
Part of the story was told quietly by the Names Project Memorial AIDS Quilt founded by Cleve Jones and friends. It was told in the ritual unfolding of panels in temple basements and college gyms across the nation. Walking the edge of the Quilt, the mother - who'd insisted to her bridge club that her son had died of cancer - found courage to tell the truth, to tell his story, to crochet a memory into a panel about the size of his coffin. How many stories have you and I heard? How many times did the whisper of unfolding panels make us shiver, and tear-up, and grab hold of the hand next to ours? In their refusal to let us go anonymously to the grave, Cleve and Company assured a memory of the stories.
Part of the story was blared into cameras and screamed into the night by Larry Kramer and his ACT UP warriors. They loaded press releases and aimed them at The New York Times; they loaded condoms and threw them at the president's motorcade. In their rage, they told another story about AIDS: about those who believed gay men deserved to waste away, about those in power who preferred prejudice to compassion and cowardice to honor. So important was their story, and so powerful their fury, that I dreaded them when I spoke to the 1992 Republican Convention. I feared they would say I had sold out; that I didn't understand because I was a woman, not a gay man; that I didn't belong with them, because I'd come from a family with means whose father spoke to presidents.
Both the Quilt and ACT UP are, today, mostly memories. The past presidential campaign was the first in the history of AIDS that the Quilt, in all its grief and glory, was not lain across Washington's Mall. ACT UP is still alive, but Larry is fighting as much to open the doors for organ transplants as for AIDS funding.
The image of the Quilt and the echo of ACT UP remind us that, once upon a time, the American AIDS community did have a common story. All of us - gay or straight - had tasted the stigma championed by select Members of Congress and leaders in a series of Administrations. The story of being disenfranchised by a virus was our story; it belonged to all of us. It helped make us a community.
All of us - male or female - had known the rage that built within us, the grim, unbending suspicion that if AIDS was a death sentence, people in power did not mind. We rallied and we protested. Tom Hank's Philadelphia was our story, our fight for dignity. It gave us a sense of community.
But time, dying and treatments moved on. The gay community was so decimated by the plague that cohesion gave way to collective denial. Leaders were mostly people with the virus; sickness took those who avoided coffins. Elizabeth is dead. Arthur is dead. Paul is dead. It's hard to lead when you're dead. And the rest of us, mostly, just went home to live or to die, but mostly to hide.
The hardest thing to find in the AIDS epidemic today - whether you are a physician or a policy buff, an activist or a journalist - is anything fairly resembling an American AIDS community. We can use the phrase, "American AIDS community," but it has no substance. We are not one anymore, no matter how a virus may be touching each of us. We are divided into silos of interest and self-interest, a few advocates and many drug manufacturers, researchers and physicians. We are divided by economics and geography and ethnicity. We are seen less as a national community than as a government category. We are not a political force. We are, in fact, just barely a political issue.
Communities need rituals by which to remember a common tradition. That was the role of the Quilt; it told the AIDS community's story as a growing story of a swelling epidemic. The community's rituals have mostly faded now. We folded them up with the Quilt in the Fall of '96. We put them, mostly, away. Even the red ribbon has now been buried under drawers full of other ribbons symbolizing other causes.
I am not wishing for some “good old days” when people with AIDS were dying left and right. I'm not wistful for the agony of those years, or naive about the vast improvements that have been made in the treatment of AIDS. I am grateful for the advances. But I am haunted, and some days distraught, at our collective and profound loss of community.
And it is not only an American community for which I long; it is a global AIDS community. I've stood in the African dust with sisters whose children are dying. I've looked across acres of orphans while holding the hands of my own sons. This is not an academic exercise for me, or an emotional appeal for Americanism.
Most Americans believe there is no need to have an AIDS community because they believe AIDS has a cure, just like diabetes. They believe AIDS is an African problem because people in Africa can't afford to be cured; if only those Africans had more cash, they too would be fine. When I try to explain that AIDS is not cured, most Americans believe I'm merely whining. There's a cure - they're sure of it, they know it. African American youth believe it because of Magic Johnson. Other folk believe it because what else would a "manageable disease" be, if not "cured"? And, let's be candid: We haven't done well ourselves at getting out this message - perhaps because some of us also wish it were cured in our own lives.
Which brings me back to the matter of stories. A community is, in many respects, a group of people bound together by a common story. What made Israel "Israel" is a common story brought down from Fathers Abraham, Isaac and Jacob. What makes the Ute people or the Navajo people a "people" is not simply common DNA, but common stories. What sets the DeAngelo family apart from the Hernandez family and the Jones family is their uniquely woven set of stories called "family tradition." It's stories that tell us who we are, where we belong, where we find our place among others. The absence of such stories means we are, in some profound ways, orphans - which is why so many of those with AIDS today have no context, no support systems, no advocates. They are without the community that defines us and cares for us and makes us, somewhere between cradle and grave, human.
Stories are our way of making sense out of what cannot be explained, our way of making endurable what could otherwise not be endured. Paul Rudnick, the wonderful writer, once explained why gay men have written comedies about AIDS. "Only money, rage, and science can conquer AIDS," he said. "But only laughter can make the nightmare bearable."
One of the reasons I love telling the story of that sainted public health nurse and her Republican-loving mosquitoes is because it says something of the AIDS community. If you knew nothing of AIDS political history, it wouldn't be funny. But it plays on our American story, and our sense of the impossible. It's like Jewish humor or Italian humor; it's "inside humor,'' an AIDS community joke. Besides, it makes us laugh - which makes the nightmare bearable.
So here's my call to you today. I want you to start gathering, and shaping, and telling, and publishing stories. That's right: stories. We need to humanize AIDS again, taking it out of the dusty realm of statistics and projections and patient charts. We need to reattach AIDS to something human, something that slashes into a family and matters to a congregation. Both the media and the politicians know the numbers, what they don't know is that the numbers matter. They think of them as one story told a half- million times. We need to help them understand, and we need for ourselves to remember, that they were and are not one story told endlessly. They are a half-million stories, told one precious life at a time. And if we can raise our eyes to see on the distant acres of orphans and miles of dying brothers and sisters, the volume of stories to be told is truly countless.
My goal this morning is personal, not political. But I wish you would help shower the current Administration in Washington DC with stories of AIDS that explain realities, not theories. In particular, I wish those of you with contacts on the Republican side of the aisle would use them. I am an appointee to the Presidential Advisory Council on HIV/AIDS where we need a profound understanding of human stories lest we advocate profoundly inhumane policies.
I have, for example, always held that the surest way to avoid sexual transmission of HIV is to avoid sex. Abstinence is a useful tool of prevention. But consider my own story, and that of so many other women: I contracted AIDS in my marriage...where abstinence is improbable if the relationship is to continue. Thus, when we wander into something called "abstinence only" I believe we've moved from prevention to philosophy, from strategies that save lives to a lone strategy that will take lives. The only way I know to counter the moves we hear, see and fear, is to reach for honest stories. Because when a Congresswoman needs to move a piece of legislation, she puts out a call to her district for stories. Those stories become human when they appear in legislative rooms as witnesses and in press reports as examples. It's why a President plants families in the House Gallery during his State of the Union, why USA TODAY leads any policy story with people affected by the policy. The number "six million" has no meaning until you attach it to Anne Frank's story.
They fact that we have let the American AIDS community grow mute and scattered; the fact that our numbers are being reported but our story isn't being told - it is, if you'll forgive me putting it this way, what is killing us. The CDC reports 900,000 Americans with HIV. And in the corridors where power-brokers do their work; in the press rooms and editorial boards where the American mind is shaped; in the lobbying firms who want these monies for their clients - they know, they absolutely know, that there is no clamoring, protesting, voting American AIDS community.
We must find ways to reach the Secretary of State. Colin Powell has described the international AIDS crisis as a profound and moral responsibility that rests not solely, but seriously, with him. He's drawn the line between hopelessness borne of AIDS and terrorism that easily flows from such hopelessness. The Secretary of State knows the numbers. What he will need to generate support among others is stories: stories that show Americans care about AIDS, stories that rise from families who have lost loved ones and can identify with the African mother staring at her soon-to-be-orphans. To mount an American response, he needs to know that there is an American community of interest - not just pockets of professional self-interest - in AIDS. (What do you think America's policy toward Israel would have been for the past 50 years if there were no American Jewish community?)
Governor Thompson is now Secretary Thompson. For him, AIDS threatens to be a budget problem on one side and a philosophic problem on the other. If he is to advance our cause, then he needs witnesses. And we must tell him and others the truth.
What could speed creation of the AIDS community is adding your individual stories to the legacy of millions of others. What matters most isn't your case load or patient profiles, your agency budget or therapy of choice. Our jobs and systems do not define us. We discover who we are when, after an impossibly long day of work with paper and people, we finally give up and go to bed. And there, somewhere in the dark, you hear the voice of someone with whom you once knew romance. When he says, 'I love you," you drift off to sleep. And if she says, "I can't go on like this...," you stay awake. In the end, you see, it isn't our statistics that define us; it's our story.
If you want to support one another as social workers, clergy, caregivers and people with AIDS, you need time to tell each other stories, not just statistics. You need inside humor. You need to be not only members of a coalition but members of a community. If I had a wish to waste, it would be this: I wish I could get you to tell stories to each other and to me: the ridiculous and the sublime, the funny and the sad. Stories lift us up, inspire us, shake us from the professionalism and soberness that tend to associate with events such as this.
When a few years ago we created the Mary Fisher Clinical AIDS Research and Education Fund at the University of Alabama, what drew us there was a physician - my physician - Michael Saag. His name appears on scholarly papers every week. His break-through research has saved more lives than I can imagine. I know the importance of research and discovery to Michael. I know why the numbers matter to him. But it isn't statistics that will enable Michael, or any of you, to re-engage and build an AIDS community. It's stories. Let me give you an example on my way out - a story taken from I'll Not Go Quietly, a book we published in 1995.
"Billy Cox came out of his hospital bed in Birmingham, Alabama, to bring me a hug in Montgomery.
I'd first met him a year earlier at the University of Alabama at Birmingham where I was visiting Michael Saag. Michael wanted me to meet Billy, to see his spunk and spirit. 'Billy's the boxer in the ring,' Michael once observed. 'The doctors and nurses and medical staff, we're just the trainers in his corner. His friends and family are his fans, cheering him on.'
Now, a year later, I'd come to Montgomery to speak. But what I said there was not as eloquent as the events that soon played out in the life of Boxer Billy and Cousin Michael.
Six weeks after he'd brought his hug to Montgomery - seven years, four months, and three days after testing positive for the AIDS virus - Billy Cox died. November 23, 1994.
On Billy's last day, Michael Saag was leaving town for a few days and stopped in just to say good-bye. When he heard Billy's labored breathing, he called the family together and told them the end was near. And then - as nurses and old friends and Billy's family crowded into the room, forming a remarkable community bound only by love for the boxer - Michael rested his head on Billy's chest and, unashamed, before the crowd, sobbed, 'I'm sorry, I'm sorry.'
Science has limits. Even community has bounds. But no one will ever know what love might do."
A community is defined by its stories: stories of victory and loss, of heroes and scapegoats, of tragedy and triumph. For the American AIDS community to become community again, we must find ways to tell the stories again, to let others know that after Billy Cox came others, each with a name, each with a purpose, each with a life.
In my own story, you are the heroes. You are the ones whose stories matter most, whose values need to shape policies, whose passions need to find headlines. You are the ones to whom I want to point my growing sons when they set out to find role models. I want them to look beyond their father's New England grave to see you here, still at work a decade beyond Brian's dying. I want them to know that, should I leave, there is a community that will catch them as they fall.
If you will tell your story, we can build our community. Whether I am here to see it happen, or merely know it is coming, either way I can promise my children a more secure future.
And this is the promise with which I leave you: When we finally become a community, and we pause for a moment to see the rightness of its cause, we will hear a very ancient voice calling out to us. It will be a voice full of understanding and courage, full of compassion and hope. Even now, here, if we listen closely, we will hear that voice. It has a six-word message aimed most at those ready to give up and give in. We heard it first from the lips of an ancient rabbi. You hear it now, from me, as surely as if it came from God: "Grace to you, and peace."
© 2002, The Mary Fisher Clinical AIDS Research and Education (CARE) Fund. Reprinted with permission of Mary Fisher.
THE RIVER CITY NEWS MORE COVINGTON NEWS THAN ANY OTHER SOURCE:
The playground that burned at Sixth District Elementary School in Austinburg will get some TLC from the community on Saturday, July 21. The playground renovation and beautification project that was planned before the fire will proceed as scheduled, but with a larger mission. The event will run from 11:00AM to 2:00PM and will feature the following activities:
- Adopt a Plant Make a donation to the renovation efforts by purchasing a plant and then placing it in one of the the commemorative garden plots
- Soak the Superintendent For just two bucks you'll get three chances to dunk Covington Independent Public Schools Lynda Jackson and other community leaders
- Share your ideas There will be an interactive booth to share ideas on what should be at the rebuilt playground
- Volunteer Sign Up and Donations If you have experience in construction, landscaping, planting, and/or painting you can sign up for upcoming community build events
- Make a donation!
Wait, what? President Barack Obama is the "smallest government spender" since Eisenhower? Who's reporting this? Wait, Forbes? Interesting: So, how have the Republicans managed to persuade Americans to buy into the whole “Obama as big spender” narrative?
It might have something to do with the first year of the Obama presidency where the federal budget increased a whopping 17.9% —going from $2.98 trillion to $3.52 trillion. I’ll bet you think that this is the result of the Obama sponsored stimulus plan that is so frequently vilified by the conservatives…but you would be wrong.
The first year of any incoming president term is saddled—for better or for worse—with the budget set by the president whom immediately precedes the new occupant of the White House. Indeed, not only was the 2009 budget the property of George W. Bush—and passed by the 2008 Congress—it was in effect four months before Barack Obama took the oath of office.
Accordingly, the first budget that can be blamed on our current president began in 2010 with the budgets running through and including including fiscal year 2013 standing as charges on the Obama account, even if a President Willard M. Romney takes over the office on January 20, 2013.
It might have something to do with the first year of the Obama presidency where the federal budget increased a whopping 17.9% —going from $2.98 trillion to $3.52 trillion. I’ll bet you think that this is the result of the Obama sponsored stimulus plan that is so frequently vilified by the conservatives…but you would be wrong.
The first year of any incoming president term is saddled—for better or for worse—with the budget set by the president whom immediately precedes the new occupant of the White House. Indeed, not only was the 2009 budget the property of George W. Bush—and passed by the 2008 Congress—it was in effect four months before Barack Obama took the oath of office.
Accordingly, the first budget that can be blamed on our current president began in 2010 with the budgets running through and including including fiscal year 2013 standing as charges on the Obama account, even if a President Willard M. Romney takes over the office on January 20, 2013.
AIDS 2012: Listening, Learning and Working Together to Help Turn the Tide
HIV Policy & Programs July 12, 2012 By , Assistant Secretary for Health, U.S. Department of Health and Human Services
This week, many in the HIV community are finalizing plans for participation in AIDS 2012 
– be it in person, via webcast, or via social media. I feel honored to join my federal colleagues to prepare for the U.S. government’s presence at this historic meeting. The current wave of activities reminds me of the preparation for, and participation in, my first International AIDS Conference, AIDS 2010, held in Vienna, Austria. That summer of 2010 was a time of great significance in our efforts to combat HIV/AIDS, both in the U.S. and around the world. President Obama had just released the first-ever National HIV/AIDS Strategy that outlined a bold new vision for our response to the epidemic.
– be it in person, via webcast, or via social media. I feel honored to join my federal colleagues to prepare for the U.S. government’s presence at this historic meeting. The current wave of activities reminds me of the preparation for, and participation in, my first International AIDS Conference, AIDS 2010, held in Vienna, Austria. That summer of 2010 was a time of great significance in our efforts to combat HIV/AIDS, both in the U.S. and around the world. President Obama had just released the first-ever National HIV/AIDS Strategy that outlined a bold new vision for our response to the epidemic.
During the conference, I was privileged to participate in an opening day session entitled, “Discussion on the National HIV/AIDS Strategy” and hear from many other leaders in the HIV community. A few of these conversations were recorded in these podcasts: a conversation with Dr. Jack Stein on Drug Control Policy and a conversation with PACHA members Helene Gayle and Phill Wilson. I also recorded a podcast on HIV travel restrictions.
In the two years since AIDS 2010, we have witnessed new milestones in policy, science and service. These developments include:
- Lead federal agencies released implementation plans in support of the U.S. National HIV/AIDS Strategy , and we are moving ahead in partnership with the HIV community to make those plans come alive.
- The HPTN 052 clinical trial, an international HIV prevention trial sponsored by the National Institute of Allergy and Infectious Diseases (NIAID), found that if HIV-infected heterosexual individuals begin taking antiretroviral medicines when their immune systems are relatively healthy (as opposed to delaying therapy until the disease has advanced), they are 96 percent less likely to transmit the virus to their uninfected partners. NIAID Director Dr. Anthony S. Fauci said: “The HPTN 052 study convincingly demonstrated that antiretroviral medications can not only treat, but also prevent the transmission of HIV infection among heterosexual individuals.”
- The observance of the 30th anniversary of the first reported cases of AIDS in the U.S. brought renewed attention to HIV/AIDS.
- A CDC study (TDF2) and a separate trial (the Partners PrEP study) provided the first evidence that a daily oral dose of antiretroviral drugs used to treat HIV infection can also reduce HIV acquisition among uninfected individuals exposed to the virus through heterosexual sex.
- Secretary of State Hillary Rodham Clinton shared the U.S. Government’s bold new vision of creating an AIDS-free generation, and honored the remarkable progress made in 30 years of fighting AIDS.
- On December 1 (World AIDS Day), President Obama announced accelerated efforts to increase the availability of treatment to people living with HIV/AIDS in the United States. He challenged the global community to support The Global Fund to Fight AIDS, Tuberculosis and Malaria, and called on Congress to uphold its commitments. And he called on all Americans to keep fighting to end the epidemic. On the same day, HHS Secretary Kathleen Sebelius announced new funds to support AIDS Drug Assistance Programs and increase access to HIV/AIDS care services.
a landmark conference. I am proud to report federal employees from across the government had more than 500 abstracts accepted and will have the opportunity to share their exciting research findings. And, finally, I would like to call attention to two critical sessions:- On Sunday July 22 from 1:30-3:30 PM, the Department of Health and Human Services (HHS) will sponsor a satellite session entitled, “Achieving the Goals of the U.S. National HIV/AIDS Strategy: Future Directions.” Please join us in the convention center in Session Room 9. After the session, Dr. Ronald Valdiserri, Director of the Office of HIV/AIDS and Infectious Disease Policy, will share a summary of the key points in a blog on AIDS.gov.
- On Monday July 23 in the daily plenary scheduled for 9-10:30a.m., Dr. Anthony Fauci, NIAID Director, will discuss “Ending the HIV Epidemic: From Scientific Advances to Public Health Implementation”. If you are not able to attend the session, Kaiser will provide a live webcast
is an exceptional chance for dialogue about moving toward an AIDS-free generation and for sharing progress in turning the tide together. I invite everyone to follow the conference at USG@AIDS 2012. My federal colleagues and I will post updates daily on the AIDS.gov blog. Please join me and experience this historic event.
Yes Darlin', I DO Agree... We need to get these Northern Kentucky - South Bank - Covington LGBT Residents and Our Allies FIRED UP To GO FORWARD! E.G.: JULY IS NATIONAL HIV/AIDS AWARENESS MONTH!? It is also the 25th Anniversary of The Names Project Foundation's "AIDS Memorial QUILT" which will be displayed once again in its entirety all across Washington during this year's Biennial International AIDS Conference "AIDS 2012" Talk amongst yourselves; I'm phklempt...
The Real World of The SoBnkHIVe...
"I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived..." Henry David Thoreau.
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