GUEST COLUMN
Each month, the National Library of Medicine invites community members who are making a difference to reflect on current events, key issues, or historical milestones in global health. Check back often for updates, and learn more in the online exhibition.
Meet Our Featured Guest Columnist: Sarah Schulman
Sarah Schulman is an award-winning novelist and an AIDS activist and former member of the AIDS Coalition to Unleash Power (ACT UP). She is helping to collect an archive of oral history interviews with other activists to preserve the history of the AIDS movement for future.
Q: What does "health and human rights" mean to you?
A: All human beings deserve the same access to resources and opportunity. By virtue of being born, this is every human being's inherent right.
Q: How and why did you get involved in AIDS activism?
A: I was a reporter for the NYC Gay newspaper in the early 80's and so covered the early days of the AIDS crisis. Articles on the closing of the bathhouses, the exclusion of women from experimental drug trials, the uses of placebo in pediatric AIDS, the first piece on AIDS and the homeless, the early PWA movement etc- have all been anthologized in my book MY AMERICAN HISTORY: Lesbian and Gay Lives During the Reagan/Bush Years, which begins before the AIDS crisis and documents its early years. I am one of the few early witnesses to still be alive and have a long range overview on these events.
Q: Describe some of the successes you have seen in your work.
A: AIDS activists were human beings from a despised community, with no rights, abandoned by their families and their government, facing a terminal illness, who joined together and forced this country to change against its will, thereby saving each other's lives. There have also been great disappointments in this process, but simultaneously it is a testament to the power of the Politics of Accountability: in which people with power are made to be accountable for the consequences of their actions at the same time that regular people take the responsibility of accountability when others are being violated. It's a model for a healthy society.
Q. What are some of the challenges that remain?
A: There are two kinds of AIDS that are not over.
1. There is AIDS of the past.
2. There is on-going AIDS.
Neither are over, although each one is treated very differently in the present.
On-going AIDS involves global Gentrification: structures of global dominance in which existing knowledge about medicine, water, housing, food, existing methods of education and existing international resources are denied human beings in huge numbers so that a small group of privileged people can enjoy happiness at the expense of others. Yet, while continuing to withhold what other people need, we who benefit from their deprivation, see ourselves as progressive, compassionate, and making a contribution. The apparatus by which the West benefits from not applying our resources to on-going AIDS is pretended away, and replaced with a false story about our superior generosity.
On-going AIDS also includes existing stigma and punishment of homosexuality at home, so that the emotional and psychological job of HIV prevention is left to individuals who are regularly demeaned and disrespected by their families, Mass Entertainment, and government. The punishment is so severe, that we feel it necessary to create prevention programs for "men-who-have-sex-with-men" because we feel that calling homosexual sex, homosexual will keep people who are having homosexual sex from the support that they need. We have to gentrify the truth about sex in order to save lives.
On-going AIDS also involves recognizing that Education and Job Training that give people an interesting, valued social role are the best prevention against Drug Abuse. That getting into effective rehab should be as easy as getting into jail. That needle exchange should be as pervasive as liquor stores, and, as Linda Villarosa pointed out in the front page of The New York Times in 2004, that the lack of available partners caused by the incarceration and diminishment of Black men, makes Black women more vulnerable to unsafe sex, and AIDS infection. Finally, on-going AIDS means recognizing that people become infected, as Douglas Crimp said about his own seroconversion after twenty years of AIDS activism, "Because I'm human."
But I am also concerned with Past AIDS. Its enormous, incalculable influence on our entire cultural mindset, and how we each live every day.
Amazingly, there is almost no conversation in public today about these events or their consequences. Every gay person walking around who lived in New York City or San Francisco in the 1980's is a survivor and carries with them the faces, fading names, and corpses of the forgotten dead. When you meet a gay New Yorker over forty, this should be your first thought. Like the way that people were assumed to have fought in World War II or Vietnam. Our friends died and our world was destroyed because of the neglect of real people who also have names and faces: whether they were politicians or parents.
81, 542 people have died of AIDS in New York City as of August 16, 2008. These people, our friends, are never mentioned, their absence is not faced, and the consequences of their loss are not calculated.
3,000 people died in New York City on 9/11. These people have been highly individualized, the recognition of their loss and suffering is a national ritual, and the consequences of their aborted potential are assessed annually in public. They have been commemorated with memorials, organized city-wide gestures, plaques, and a proposed new construction on the site of the World Trade Center designed to make their memory permanent. Money has been paid to some of their survivors.
In 1987, ACT-UP's affinity group GRAN FURY, created an installation in the window of The New Museum. It may have been the first work about AIDS in a major Art Institution. The installation was called "Let The Record Show" and, employing the Politics of Accountability at the root of ACT UP's ethos, featured photos of real life individuals who were causing the deaths of our friends. People like Jesse Helms. In the background was a photo of the Nuremburg trials. The implication was that the specific people who caused our friends to die, would one day be made accountable. They would be reduced from their undeserved grandeur into wilted hovering little men like Rudolph Hess wasting away in Spandau Prison. However, our Public Enemies, people like Cardinal Ratzinger, Ed Koch, Ronald Reagan - they got away with it. No-one was ever made accountable. When Jesse Helms died, his life was marked benignly. The names of our friends who Ronald Reagan murdered, are not engraved in a tower of black marble. There has never been a government inquiry into the fifteen years of official neglect that permitted AIDS to become a worldwide disaster.
Where is our permanent memorial? Our day of mourning? Our federal aid to survivors and damaged communities? Where is our Nuremberg Trial? Where is the story of our murdered friends - what they believed and what they did? Where is our catharsis, our healing? Where is our post-traumatic stress? Where is our recovery?
Q: How can young people make a difference?
A: The hypocrisy and oppression around AIDS is part of the sickness our larger society. We need to rebuild this country completely, and only young people can make this happen, because you have the most at stake. The most important first step is to realize that it can be changed. This can be a country based on the politics of Accountability. The only people who tell you change is not possible are the people served by the system as it is. Don't listen. Second step, imagine and then describe out loud the world you want to live in. People without rights have transformed their societies and overthrown their rulers many times in human history. Think of transformation on every level.
A: All human beings deserve the same access to resources and opportunity. By virtue of being born, this is every human being's inherent right.
Q: How and why did you get involved in AIDS activism?
A: I was a reporter for the NYC Gay newspaper in the early 80's and so covered the early days of the AIDS crisis. Articles on the closing of the bathhouses, the exclusion of women from experimental drug trials, the uses of placebo in pediatric AIDS, the first piece on AIDS and the homeless, the early PWA movement etc- have all been anthologized in my book MY AMERICAN HISTORY: Lesbian and Gay Lives During the Reagan/Bush Years, which begins before the AIDS crisis and documents its early years. I am one of the few early witnesses to still be alive and have a long range overview on these events.
Q: Describe some of the successes you have seen in your work.
A: AIDS activists were human beings from a despised community, with no rights, abandoned by their families and their government, facing a terminal illness, who joined together and forced this country to change against its will, thereby saving each other's lives. There have also been great disappointments in this process, but simultaneously it is a testament to the power of the Politics of Accountability: in which people with power are made to be accountable for the consequences of their actions at the same time that regular people take the responsibility of accountability when others are being violated. It's a model for a healthy society.
Q. What are some of the challenges that remain?
A: There are two kinds of AIDS that are not over.
1. There is AIDS of the past.
2. There is on-going AIDS.
Neither are over, although each one is treated very differently in the present.
On-going AIDS involves global Gentrification: structures of global dominance in which existing knowledge about medicine, water, housing, food, existing methods of education and existing international resources are denied human beings in huge numbers so that a small group of privileged people can enjoy happiness at the expense of others. Yet, while continuing to withhold what other people need, we who benefit from their deprivation, see ourselves as progressive, compassionate, and making a contribution. The apparatus by which the West benefits from not applying our resources to on-going AIDS is pretended away, and replaced with a false story about our superior generosity.
On-going AIDS also includes existing stigma and punishment of homosexuality at home, so that the emotional and psychological job of HIV prevention is left to individuals who are regularly demeaned and disrespected by their families, Mass Entertainment, and government. The punishment is so severe, that we feel it necessary to create prevention programs for "men-who-have-sex-with-men" because we feel that calling homosexual sex, homosexual will keep people who are having homosexual sex from the support that they need. We have to gentrify the truth about sex in order to save lives.
On-going AIDS also involves recognizing that Education and Job Training that give people an interesting, valued social role are the best prevention against Drug Abuse. That getting into effective rehab should be as easy as getting into jail. That needle exchange should be as pervasive as liquor stores, and, as Linda Villarosa pointed out in the front page of The New York Times in 2004, that the lack of available partners caused by the incarceration and diminishment of Black men, makes Black women more vulnerable to unsafe sex, and AIDS infection. Finally, on-going AIDS means recognizing that people become infected, as Douglas Crimp said about his own seroconversion after twenty years of AIDS activism, "Because I'm human."
But I am also concerned with Past AIDS. Its enormous, incalculable influence on our entire cultural mindset, and how we each live every day.
Amazingly, there is almost no conversation in public today about these events or their consequences. Every gay person walking around who lived in New York City or San Francisco in the 1980's is a survivor and carries with them the faces, fading names, and corpses of the forgotten dead. When you meet a gay New Yorker over forty, this should be your first thought. Like the way that people were assumed to have fought in World War II or Vietnam. Our friends died and our world was destroyed because of the neglect of real people who also have names and faces: whether they were politicians or parents.
81, 542 people have died of AIDS in New York City as of August 16, 2008. These people, our friends, are never mentioned, their absence is not faced, and the consequences of their loss are not calculated.
3,000 people died in New York City on 9/11. These people have been highly individualized, the recognition of their loss and suffering is a national ritual, and the consequences of their aborted potential are assessed annually in public. They have been commemorated with memorials, organized city-wide gestures, plaques, and a proposed new construction on the site of the World Trade Center designed to make their memory permanent. Money has been paid to some of their survivors.
In 1987, ACT-UP's affinity group GRAN FURY, created an installation in the window of The New Museum. It may have been the first work about AIDS in a major Art Institution. The installation was called "Let The Record Show" and, employing the Politics of Accountability at the root of ACT UP's ethos, featured photos of real life individuals who were causing the deaths of our friends. People like Jesse Helms. In the background was a photo of the Nuremburg trials. The implication was that the specific people who caused our friends to die, would one day be made accountable. They would be reduced from their undeserved grandeur into wilted hovering little men like Rudolph Hess wasting away in Spandau Prison. However, our Public Enemies, people like Cardinal Ratzinger, Ed Koch, Ronald Reagan - they got away with it. No-one was ever made accountable. When Jesse Helms died, his life was marked benignly. The names of our friends who Ronald Reagan murdered, are not engraved in a tower of black marble. There has never been a government inquiry into the fifteen years of official neglect that permitted AIDS to become a worldwide disaster.
Where is our permanent memorial? Our day of mourning? Our federal aid to survivors and damaged communities? Where is our Nuremberg Trial? Where is the story of our murdered friends - what they believed and what they did? Where is our catharsis, our healing? Where is our post-traumatic stress? Where is our recovery?
Q: How can young people make a difference?
A: The hypocrisy and oppression around AIDS is part of the sickness our larger society. We need to rebuild this country completely, and only young people can make this happen, because you have the most at stake. The most important first step is to realize that it can be changed. This can be a country based on the politics of Accountability. The only people who tell you change is not possible are the people served by the system as it is. Don't listen. Second step, imagine and then describe out loud the world you want to live in. People without rights have transformed their societies and overthrown their rulers many times in human history. Think of transformation on every level.