How ACT UP Changed the Face of AIDS and Activism - ACLU - At Liberty Podcast

movements who try to force everyone into one analysis or one strategy have all failed this is my study of history I've never found an exception you know the only way you can succeed and I'm this is talking from a leadership point of view real leadership is facilitating people to be effective from where they're at instead of trying to force people into homogeneity from the ACLU this is at Liberty I'm Kendall cesme your [Music] host October marks lgbtq history month and this week we are taking an

opportunity to honor the legacy of lgbtq activism throughout the AIDS epidemic in the late 80s and early 90s AIDS claimed the lives of thousands of New Yorkers a year with city state and National governments doing little to nothing to help fix the crisis due to rampant homophobia and bigotry in response a group of New York City activists founded act up a Grassroots queer Le protest movement to urge action call for Change and stand in the Gap as thousands of queer people died due to dogged persis

tence steadfast unity and diversity and pointed demonstrations act up went on to achieve lasting victories and medical treatment Health Care access and more today's demonstration is the latest of many staged by the militant group act more than a hundred people were arrested during a protest demonstrators were demanding more money in the war against AIDS today in classrooms across the country this history has largely been left Untold in our broader public discourse the AIDS epidemic in the US and

the subsequent movement that Rose to fight for lgbtq lives is often over looked enter Sarah Schulman a novelist journalist playwright and AIDS historian who is fighting to ensure that we remember Sarah is the author of 20 books her latest being let the record show a political history of act up in New York 1987 to 1993 which documents the people and tactics Behind Act Up's success Sarah is also the co-director of the act up oral history project and she joins us today to discuss and remember the

movement Sarah welcome to at Liberty and thank you so much for joining me thank you so I want to start just with a little grounding a little primer if you will on history in 1981 Lawrence Mass a journalist for a gay newspaper in New York City was the first journalist in the world to write about AIDS by 1987 AIDS activists founded act up can you give us a broad overview and I know this is a difficult task given how much happened in these years of these first years of the AIDS crisis and the event

s that paved the path for act up sure well we now know that aids is probably about a hundred years old uh the first signs of it in the United States from the 1940s and we know it was in New York in the 1960s and70s but because of the lack of Health Care in this country country uh it was not identified until 1981 so 1981 is not the start of AIDS it's the start of the recognition of the existence of AIDS and the first Public Announcement was in the New York Times in July 3rd 1981 the famous headli

ne 41 cases of rare cancer found among homosexuals in San Francisco now just to interpret what that headline means uh for today in 1981 one gay men were a profoundly oppressed minority sodomy laws were ever present in fact gay sex was illegal nationally until the Supreme Court overturned it in 2003 New York City did not have an anti-discrimination Bill until 1986 so you could be fired from your job or kicked out of your apartment and you could be denied public accommodation which meant service i

n a restaurant or hotel familial homophobia was the cultural norm and had a huge impact on history so in 1981 there was an obsession with finding the quote cause of homosexuality because today we know that sexuality and gender are different in each person and can change over a lifetime but in 1981 the idea was that everybody should be born straight and CIS and if you're not something went wrong so when that headline came out what it was really saying was the biological disease of homosexuality i

tself and this affected the way AIDS was understood from the beginning the first name for the disease was gay related immune deficiency now there's no such thing as gay related immune deficiency or like it was called Gay cancer there's no such thing as gay cancer okay cancer cannot be gay but there was an assumption that there was something inherently biologically wrong anyway in the first five years after this recognition of the existence of the disease 40,000 people died in the United States t

he government did absolutely nothing and Pharma did nothing I mean what they were trying to do was recycle failed Cancer drugs that they own patents for hoping that something would hit and their concept of what they were looking for was the pill you take to make your AIDS go away which would have been a huge market for them but you know AIDS is like the word cancer it's an umbrella term it's different in each person what it means is that your immune system stops functioning so each person would

develop different symptoms of this they were really horrible like an AIDS death is a terrible death and people really suffered so very young people would become demented or go blind or get the skin cancer called kosi saroma that basically ate you alive their nerves and their legs would swell and they couldn't walk they couldn't process nutrition and they would waste away and these were the things that made people die so you didn't die of quote AIDS you died of an opportunistic infection so peopl

e with AIDS wanted treatments for each of these infections but Pharma didn't want to research them because they were smaller market shares so that's sort of where we all started now the way the gay community responded in the first five years is trying to create some kind of faximile of Social Services and this is where familial homophobia is very significant because normally if a person has something wrong with them in many many cases family members will try to help them but so many gay people h

ad had to leave their small towns or experienced familial homophobia and they were out there on their own so organizations like Gay Men's Health crisis started something called the buddy system where people would volunteer and you'd be assigned to a person with AIDS and you would like hang out with them or help them do their laundry until they died uh there was a group called God's love we deliver that would bring people free food food and there was a group called paw that would walk people's do

gs so this was sort of what the gay community was doing for the first 5 years but what really changed this was the Supreme Court Bowers V Hardwick decision in 1986 that upheld the sodomy law so that in the middle of a mass death experience the Supreme Court decided that gay sex should continue to be illegal and this made people very very angry and this was a politicization moment there were angry demonst ations in New York and Washington without permits and then you start to see like small zap g

roups and this was a tactic that came from the previous movement the Gay Liberation movement started to emerge so there was for example a graphics Collective called The Silence equals Death Collective that made that famous poster that everyone seing with the pink triangle that says silence equals Death and then on March 10th 1987 the writer Larry Kramer gave a talk at the gay and lesbian center in New York and people in the audience decided that they wanted to start a group so they reconvened a

few days later and they started the AIDS coalition to unleash power wow and at what point did you join act up yourself well I actually was involved very early because I was a reporter in the gay press and in the feminist press so there was like these underground papers and I started in 1979 when I was 21 even before Reagan was elected um and every city had at least one gay paper and one feminist papers and our job was to articulate these issues because we were there was a complete blackout in th

e mainstream press nothing about us was covered we couldn't even be mentioned so around 19 in the early 80s I started covering aids for women news which was a feminist newspaper uh gay community news which was a lesbian and gay leftwing newspaper came out of Boston and then the paper you mentioned that Larry m road for the New York native which came from New York so um like the very first thing I covered about AIDS was the first announcement that there had been a case of AIDS in the Soviet Union

I covered uh women being excluded from experimental drug trials this was a very early piece that I did I think it was in the Village Voice I covered pediatric AIDS which was a huge issue in New York City at that time that was a very early issue about women of color and the question of consent related to HIV so I covered that I did the first piece on homeless people with AIDS so by the time um act up was founded in '87 I'd been on this beat for about five years and act up was founded in March an

d I joined in July of 1987 and what were those early days of act up like how did people determine what the operating principles were going to be how was it organized well it's very interesting because it really truly was a radical democracy and there were only was one sentence of unity principle of unity which was direct action to end the AIDS crisis and that was as opposed to Social Service so basically if you were doing direct action to end the A's crisis you could do it now what's interesting

about this movement is that it was very heavily influenced by the previous feminist Women's Health movement which had been a patient centered movement since when that movement started in the late 60s there were hardly any women who were even doctors and women who had come from that Movement Like Marian bons off or Risa denenburg and came into act up held weed to call it a teaching very early on on this concept of patient centered politics so act Up's founding principle was people with AIDS are

the experts imagine that imagine an organization to try to end the AIDS epidemic and support people with AIDS and having the organizations of The Movement Center people with AIDS as if they knew something it had to because there were no treatments and people were dying you know so they had very concrete needs so these concrete needs determine the direction of the organization and interestingly so because it was a radical democracy a lot of things went on at the same time it was a kind of simulta

neity of action so like let's say you had an idea and I thought it was terrible we would yell and scream at each other because New York City pre gentrification lots of Jews and Italians and people screaming but that was fine and then in the end um if I didn't like what you were doing I wouldn't try to stop you from doing it I just wouldn't do it and then I would just go do my thing with my five people so this created all kinds of people acting at the same time in all kinds of different ways base

d on who they were which really I mean to me this is the way to go forward because people can only be where they're at and people need to respond in a way that makes sense to them movements who try to force everyone into one analysis or one strategy have all failed this is my study of history I've never found an exception you know the only way you can succeed and I'm this is talking from a leadership point of view real leadership is facilitating people to be effective from where they're at inste

ad of trying to force people into homogeneity and this just evolved naturally in fact nobody ever discussed that this was our structure it just was um Maxine Wolf who was one of the leaders of act up um made the point that and this was retrospective but that if you go action first your theory will emerge because you have to make decisions about how you're going to do your action and these decisions help you cohere your values you know if you go Theory first you're doomed because nothing is at st

ake and your polar over nothing so it was a completely action forward organization it sounds so simple and how you describe it and yet it is actually quite radical in its nature and I wonder what you think keeps us from from replicating that in other movements or from just like what about our human nature I mean this is a weird answer but I think AIDS made people grow up because the stakes were so high I mean you know when AIDS started I was 23 right and you're very young and you just realize wo

w if I don't get this medicine for this guy or he doesn't get this he's going to die so you got to do it and there's therefore there's less control because each person has a mission that is doable the thing of trying to control everybody and telling them what words to use and they you know this doesn't work like right now every single Community is under attack everybody and if your idea is that you can only work with people who think of the same way you do about everything you won't be able to w

ork with anybody you have to be flexible and grown up the goal has to be to win the goal can't be to change and control everybody around you do you think that that's missing today I think people don't understand what activism is they think that activism is taking people down and it's not activism is opening doors and making things possible activism is designing Solutions your own Solutions not not asking the powers that be to fix things but becoming an expert on your issue and designing solution

s that are reasonable and winnable and doable and then designing campaigns to win those Solutions so that everything you're doing it has a goal and it's connected to everything else you're doing you're not just screaming you know when act up did Civil Disobedience is because we had a concrete demand and we knew who could help us get it and so we would Target them in that way it feels very concrete it is because that's what this kind of politics has to be you know politics of human uh rights and

survival these this has to be very [Music] concrete I love that and I I think that there's a lot to learn here that can inform our current movements I mean act up achieved remarkable success impa ing institutions from the CDC to Social Security to the pharmaceutical industry would you like me to summarize some of their most concrete victories I would love that okay so I me to say that act up is one of the most effective social movements in American history and it kills me that they you people co

uld take courses like 20th century US history and not have act up in it it doesn't make any sense so in six brief years these were some of their major victories act up Force the Food and Drug Administration to change the way it approved drugs so that people who were very sick could get the drugs they needed at the time approval could take years and people only had months and the way they did it was that a playright an act up named Jim IO studied the FDA and designed something called parallel tra

ck that would allow drugs to go on their normal forever process while parallel people who were really sick could get them it's very simple he designed it and then act up did a demonstration and a huge demonstration at the FDA and forced them by communicating through the media to adapt parallel [Applause] tracks AC ran a four-year campaign to force the CDC to allow women with AIDS to have benefits women with AIDS cannot get benefits because the official diagnostic description was based on the gay

mail body and women had different symptoms that weren't on the list I mean it's so absurd and women with AIDS tended to be poorer and also tended to be sicker now this makes it as far as I can see the only white male organization in history that won very significant victories for women and people of colar in fact today every woman in the world who's taking an HIV drug is taking something that was tested on women and this is you know this is one of the most far-reaching victories of act up so th

at happened act up won a needle exchange in New York City David Dinkins was the mayor he was very nervous about needle exchange because the black community did not support it the ideology around drug addiction at the time was abstinence was the only idea um harm reduction was just being introduced and was a very new and strange idea for people so the um current and former needle users in act up uh has started a needle exchange program committee and they illegally exchanged needles in order to ge

t arrested so that they could have a court case and voila they won and made needle exchange legal in New York City which really changed the epidemic um act up took on the Catholic church now this is before the prex Scandal so the Catholic church was so powerful in New York and usually they had stayed in their Lane with the Catholic schools but this time they were sending people to school boards okay now this is what they do all the time the rightwing is all over school boards but this was the be

ginning of this um to keep condoms out of the public schools so act up realize that people would die because of the Catholic church so in December of 1989 in this action called stop the church act up in a group called w Women's Health action mobilization disrupted mass at St Patrick's Cathedral now this is an interesting action there was 7,000 people outside which is our biggest action which is not that big I mean active was a small group but some of the influential Protestants in the group nego

tiated that we would go into the mass and do a silent D in instead of you know interrupting the MK I'm in front of St Patrick's Cathedral on Sunday we're here reporting on a major AIDS activ and abortion rights activist demonstration which will be taking place here all morning inside Cardinal oconor is Michael petris jumped up on the Pew and started yelling in his New Jersey accent at the Cardinal stop killing us stop killing us you're killing us stop it killing us stop killing us we're not goin

g to take it anymore anyway this caused total chaos there were police and everybody was screaming throwing Everything 100 people got arrested Etc and I thought oh this is so terrible because we all agreed we would do it one way and this is horrible but in the end it turned out to be the best thing that ever that we ever did because um as outrageous it would be as it would be today to do that action in 1989 for homosexuals with AIDS to disrupt mass at St Patrick's Cathedral was incredible and it

was on the front page of newspapers all over the world like in Turkey everywhere and it really changed how we were perceived it was very interesting because when I interviewed Donna binder who was a photo journalist at the time she said that prior to the stop the church action uh the only kind of photographs that magazines and newspapers wanted were helpless people with AIDS dying in their beds but after sto the church they wanted images of people with AIDS fighting for their lives so it really

changed how we were represented around the world and of course condoms did get distributed in the public schools so all of these things were very significant real victories that saved lives but I think the biggest thing was that we changed how people with AIDS and career people were seen all over the world and how we felt about ourselves and that's been you know lasting I want to pick up on what you just said how we felt about ourselves what was the change there well we would communicate through

the media okay so like gay kid in some you know small town somewhere would be wearing like a their baseball cap on back backwards and wearing Doc Martin because that was the act up look you know so it gave people an image of power that there were people who were fighting back and who were succeeding and who were fighting for their lives and that they were not alone now New York was the mothership it was the first Branch But ultimately there were 148 different act UPS all over the world and you

know it people could just start it I mean there was no there was a little bit of coordination but there was nothing was imposed or anything was so each checked up really reflected the needs of that where they were the country they were in wow thank you so much for just running through that list of Victories because there are many and it's also just really impressive to hear you kind of explain them one by one I'm curious what role you personally like you said you mentioned that you were at the c

hurch demonstration well I was just a rank and file person and act up I was never in leadership or anything but I was in a lot of actions I mean I was at act up practically every Monday night and I went to millions of actions so like I would say Day of desperation which was the first Gulf War act up called for a day of desperation and people disrupted Dan Rather and Nightly News um saying fight AIDS not Arabs and then we occupied Grand Central Station I was there for that if you look at Jim huar

d's film United in Anger you can see footage from that action I was arrested at that action I was at Trump's giving against Donald Trump uh and that was for housing for homeless people with AIDS which I had covered for the nation magazine um there were just so many you know there were zaps and there were things every every week sometimes every day we had big actions we had small actions it was a way of life so all of this is leading me to the idea that so many people don't actually know this Col

lective history and in the decades that have passed after you left act up you have said that you've noticed this Stark lack of documentation of the movement's history what led you to take on this documentation well what happened was that act up is before the internet um so when the internet Revolution which was really the end of the90s nothing that we had was digitized so if you had searched act up on Google in 1998 or something you would have found nothing uh and this is why my collaborator Jim

Hubbert and I started the act of oral history project in 2001 which the original idea was just to create raw data so that other people could do something with it right a database of sorts yeah so for the next 18 years we interviewed 188 surviving members of actop our website is actop oral his.org we put up Jim is a filmmaker so he collected uh 2,000 hours of our Ral footage including 700 hours that are shot by James Wy and then Jim has digitized all of this it's available at the New York Public

Library you can you can watch it's the AIDS activist Video Collection there um so we put as we've put hundreds of hours of footage on our website as well everything is free and we've had um almost 15 million hits on our website wow and hundreds and thousands of people have downloaded all the transcripts for free anybody can do that around the world I know that you've mentioned in the act up oral history project that each interview took between 2 and 4 hours meaning that you spent hundreds and h

undreds of hours listening to the stories what was that experience like and and what I wonder what your biggest takeaways were from the library itself well so I conducted I think all but two of those interviews and you know it's was very interesting because over 18 years you know so my Approach changed as things went along the very first thing we realized was that because there was no internet the only way you could get information was if you were in a room and someone said something to you so e

veryone only knew what they had experienced and everybody thought that that was act up and Jim and I were the same when we started interviewing people we started to realize that there was so many different things going on at the same time and nobody had a big picture because there was no document ation uh so we started trying to just figure out what it act to do and that led us to all these Arenas like there were people who were involved with you know Haitians with HIV were intered in Guantanamo

and there were people from the housing committee who were helping people from Guantanamo get housing in New York so they could get out of incarceration I didn't even know that that even happened wow that's its own story that needs to be told there's just so my ACTA did so much the Asian the API caucus was doing like translations and doing safe sex stuff so there's just so much that happened yeah it sounds like it when you've gone through you know I know this could be tough given through the ove

r 200 interviews you've collected but I'm wondering if there's any interview that like stands out to you or it's been on your mind right now they're all amazing I mean one of the things that's really interesting is that active people are very interesting people they're very s like they came from all walks of life you know we started each interview with a shot of the exterior of wherever this person was living some people lived in mansions some people lived in boarding houses with bathrooms in th

e hall it was a very wide range of people uh but they were all very sophisticated to their material because active used to do these educationals and there was no official spokesperson any person could be a spokesperson to be honest most of the interviews are fascinating this platform that you've built through the act up oral history project is so important especially because it's likely that today's students are not learning this history like I've said given the rise in educational censorship an

d campaigns against using or including racial and gender justice movements in school curricula what do you make of this moment that we're living in right now I think the thing to see is that censorship controlling information is pervasive in every element of our lives right now you could focus on black history you could focus on enforce silences around gay experience but it's a much larger phenomena of keeping us from being able to think for ourselves and have descending opinions and hear a wide

range of information it's very hard to get information so we have to understand that people's rights across the board are suppressed even though it impacts different communities differently considering we are just talking about what voices are included what voices are excluded you've named that act up was notably a white male movement how did you ensure that diversity was represented in the oral history project and stories that are told about act up well first of all let's just talk about how i

t functioned organizationally so you know when act up started there were old it was a white gay male organization primarily right and there were older men who had been in Gay Liberation but the younger men had not been politically active and for the most part did not have much political experience but the people of color and women who were in there even though they were smaller in number came from previous movements and had a lot more political IAL experience and it's interesting to look back an

d see how they operated like nobody ever stopped the action to say we have to do Consciousness raising on racism or something or sexism that never ever happened uh because frankly I think it's a waste of your time because you could spend your whole life trying to change one person and never change them what what people did instead was they Marshal the ample resources of the larger Organization for their constituencies uh and act up achieve an enormous amount for women even though there were not

that many women in it so let the record show is a print version a collection stories from the oral history project in addition to more context obviously it casts a very wide net it also I think um you know details a little bit what we were talking about closer to the beginning which was about why act up was so different and in its kind of organizing nature we talked about radical democracy not forcing consensus you don't need permission localized movements since let the record show your work has

also explored new approaches to resistance and both the pro-choice in anti- police violence movements which are movements that I think are uh very notable today can you tell us about those tactics about the new approaches to resistance well these are old subjects for me because um in 1979 when I was 21 and I was reporting for women news my beat was the new rightwing the new Evangelical Christians who were about to bring Ronald Reagan to power and I like covered right-wing anti-abortion activism

and so I've been following this my whole life you know I'm 65 now so it's 45 years later whatever my approach to these movements is always very similar which is you know look at how issues are affecting people real people what do they actually need design a solution even if it's a small one and try to build towards that goal and use the media and direct action to help you go forward so these have been ideas and tropes that I've been working with my whole life and I guess if you look at the move

ments as they exist today what are your suggestions what are your criticisms I mean I don't have criticisms I just think you know we have to always be open to looking at things in a new way I mean one of the weird ideas I've had is more involvement by the private sector you know there are people who have a lot of money who are support abortion rights and they could build facilities in blue States they could financially provide abortion for every person in this country who needs it but in order t

o do that they would have to create their own structures and the way the philanthropists think now is they give money to already pre-existing organizations and that name may not be the right way to go now I mean this is the first time in my life that I've been like strategizing for capitalists but that this is the world we live in you know the other thing is you know I I think we need to reconceptualize abortion as a collective experience for years we've seen women going out there on their own c

onfessing that they had abortions but actually abortion improves the lives of a lot of people not just the woman the man her other children her parents it helps a community advance so we should be reconceptualizing it as a as we people say we had a baby we got married why not show a multigenerational family saying we had an abortion and take it away from the woman out you know left out there on her own we have to reconceptualize a lot of this lots of very interesting ideas Sarah I really appreci

ate them and I think like we need more people like you that are just like drumming up interesting different options for how to show resistance on these issues because they are so complicated and I know that I will be taking away from this a lot of the model of act up that seems like it's really been embedded in your spirit and your way of looking at the world your Viewpoint which is to say that everyone has a role and everyone can kind of take the role I really appreciate you joining and giving

us a little bit of a brief overview of act up and the AIDS epidemic as you experienced it with feet on the ground in New York City it's been really a pleasure to hear from you thank you thanks so much for listening if you enjoyed this episode please subscribe to at Liberty wherever you get your podcasts and rate and review the show we really appreciate the feedback until next week stay strong at Liberty is a production of the ACLU produced by me Kendall cesme and Vanessa handy this episode was e

dited by Carrie Daniels Julian Silva Forbes is our [Music] intern