Robert Vazquez-Pacheco: An Oral History of ACT UP

Robert Vazquez-Pacheco Interview - December 14, 2002

Introduction

• Interview with Robert Vazquez-Pacheco by Sarah Schulman on December 14th, 2002.
• Robert is 46 years old and lives in Harlem at 327 St. Nicholas Avenue.

Early Experiences with AIDS

• First heard the word "AIDS" possibly in 1981.
• Remembers reading a New York Times article about five men in San Francisco with the illness, while at Jones Beach with his boyfriend, Jeff.
• At that time, Robert was 24 or 25, living with Jeff on the Upper West Side, and working for a lighting design company.
• Jeff was diagnosed with Kaposi's Sarcoma (KS) in September 1981, about three months after the article.

Initial Reactions and Diagnosis

• Early stories about the illness were vague, with some people dismissing it as something affecting “sluts in San Francisco.”
• Jeff's diagnosis was September 9th, 1981, his thirtieth birthday.
• They knew something was wrong due to lesions, but not specifically what it was.

Early Treatment and Support

• Doctor informed them it was cancer, which later became known as GRID and then AIDS.
• Jeff and Robert had been together for six months before the diagnosis.
• Jeff's initial question to Robert was whether he wanted to end the relationship.
• Jeff received chemo and continued working despite his illness, living in a fifth-floor walk-up on the Upper West Side.
• In the early 1980s, they didn't know many others with AIDS and there were no support groups available.

Lack of Early Treatment Information

• No treatment information was readily available; Jeff relied solely on his doctor.
• GMHC (Gay Men's Health Crisis) was contacted but did not respond.

Personal Concerns and Support System

• Robert assumed he was infected, noticing swollen lymph nodes since 1980.
• Speculates infection may have occurred in the late 1970s.
• Primary support system was family and friends.
• Jeff's family was initially unaccepting; contrasting with Robert's family who embraced Jeff.
• An example given was Robert's sister allowing Jeff to hold her baby because he was family, while Jeff’s sister did not let him near her baby.

Navigating the Hospital System

• Jeff’s family was unwilling to learn about the illness.
• Robert took it upon himself to educate his family.
• Recalls his mother-in-law cleaning their apartment in an inappropriate way with toilet paper.
• Robert assumed he was HIV-positive but did not get tested until later, focusing on caring for Jeff.

Lack of Interest in Support Groups

• Jeff did not want to participate in support groups.
• Upon Jeff’s death in 1986, Robert began to seek more engagement.

Involvement with ACT UP

• First experience with ACT UP was at their first anniversary party, a talent show.
• Initially felt like an outsider due to the in-jokes and references.
• Vito Russo was present.
• Decided to attend an ACT UP meeting with his friend David Kirschenbaum, seeking meaningful action.
• Decided to "stand where the power is," positioning themselves near key figures like Avram Finkelstein and Maria Maggenti.
• Women in leadership wasn't unusual for Robert, stemming from his experience on the Gay and Lesbian Switchboard and his matriarchal background.

Early Activism

• Moved towards activism due to anger over Jeff's death and proactive political consciousness raising.
• Recalls instances of discrimination during Jeff's hospitalizations, such as staff leaving food trays on the floor outside the room.
• First public act in ACT UP involved improving the legibility of the chalkboard notes using architectural lettering.
• Recognized as one of the few people of color in ACT UP at the time.

Majority Action Committee

• Started the Majority Action Committee with other people of color (Ortez Alderson, Robert Garcia, etc.).
• Formed due to the need to address how the epidemic affected communities of color differently.
• Ortez Alderson frequently spoke about issues affecting people of color.
• Robert ran for At-Large Representative, responsible for membership, and won.

Goals and Evolution of Majority Action

• Focused on issues affecting people of color and the unique challenges faced during the epidemic.
• Later, more people of color joined ACT UP and the Majority Action Committee.
• After Ortez’s death, it was difficult for the committee to maintain momentum.

Steering Committee (Coordinating Committee)

• Robert served on the Steering Committee (later clarified as the Coordinating Committee) along with Michelangelo Signorile, Debbie Levine, and someone from TAG.
• His focus was ensuring membership was engaged, providing introductions to new members, and ensuring members could take care of themselves.
• The committee operationalized decisions made by the membership.
• Membership opposed being "steered."

Early Actions: Seize the FDA

• Actively involved in the "Seize the FDA" action.
• Served as a marshal, helping maintain order and peace.
• Goal was to pressure the FDA to expedite the drug approval process.
• ACT UP organized teach-ins to educate people about the clinical trial process.

Clinical Trials and Compassionate Use

• Robert was not in a clinical trial at this time.
• ACT UP advocated for compassionate use, allowing access to promising drugs before widespread distribution.
• Compassionate use requires doctor application and monitoring, benefiting those with limited options.
• ACT UP is credited with winning compassionate use.

Marshaling Philosophy and Techniques

• Philosophy: to keep demonstrators safe, prevent violence, and avoid abuse by the police.
• Techniques: crowd control, acting as a buffer between police and demonstrators, leading chants, and monitoring the situation.
• Ideally, about 75 marshals would be needed for 400 demonstrators.

Emotional and Psychological Impact

• Robert felt that peacekeeping through marshaling helped him deal with his anger and served as a form of denial about his own health.
• Recalls an incident at the FDA action where he was arrested after someone broke a window.

Evolution of ACT UP and Changing Demographics

• As more people of color and women with AIDS joined, Robert transitioned out of ACT UP.
• He became the manager of the PWA Health Group around 1989.

Women's Caucus

• The Women's Caucus (including Maxine, Debbie Levine, Maria, Amy, Alexis) addressed issues like the CDC's failure to recognize certain opportunistic infections in women as AIDS-defining illnesses.
• Although accepted, women often faced a battle to get their issues discussed.

People of Color Issues

• Struggles around access and education persisted.
• ACT UP membership was largely educated about AIDS, but this information didn’t always reach communities of color.
• In communities of color, AIDS was often perceived as a disease of IV drug users.

Focus on IV Drug Users

• Keith Cylar was among those who pushed for addressing the issues of IV drug users.

Medication and Treatment Information

• Robert started taking medication in 1995.
• Didn’t want to take AZT, knowing that clinical trials did not include people of color and that African-Americans were more susceptible to anemia when taking it
• Couldn’t say if people of color and white people had different information about medication

Social Dynamics within ACT UP

• There was a presumed intimacy in ACT UP, but many people didn't know much about others’ lives.
• Observed an abundance of attractive people, but that did not necessarily mean they were available.
• Public visibility may have deterred some from pursuing relationships with Robert.
• Relationships in ACT UP were often very public.
• Dating someone in ACT UP was all-consuming but also satisfying.
• Gregg Bordowitz and Robert dated for a while.
• Starting to work on AIDS as manager of the Health Group changed Robert's relationship with ACT UP.

PWA Health Group and Access to Medications

• Robert was paid little as the manager of the Health Group, but still considered it a form of activism.
• The Health Group operated as a buying club for unapproved drugs like Dextran Sulfate and lipids.
• Dextran Sulfate was bought from Japan with doctors' permission.
• The feeling at the time was that there were very few options, with AZT being the only approved drug.

Concerns about AZT

• Robert was hesitant to take AZT due to a lack of studies on people of color and concerns about anemia.
• Didn’t think that the medications were necessarily good
• Robert stressed the importance of access to medication for people of color and women.

Influence of ACT UP on Personal Life and Social Change

• Saw ACT UP as an opportunity for social change by addressing issues like racism, class, and sexism through the lens of AIDS.
• Believed AIDS had the potential to force changes in healthcare access, information, and medication.
• Advocated for expanded access in clinical trials.
• The CCG (Community Constituency Group) allowed community members to review clinical trial information alongside researchers.
• Tony Fauci was the head of the NIAID.

Advocacy within the ACTG

• As one of the few people of color talking about the science of treatment, Robert was invited to sit on the ACTG.
• Emphasized the importance of cultural sensitivity and appropriateness in clinical trial recruitment and materials.
• Community members needed to be part of the whole research process
• Some researchers were receptive to these suggestions, while others resisted.
• Felt the government was using this white male medical model
• Juan Ledesma, a Latino treatment advocate from LA, was supportive of the scientist

Challenges and Disconnects

• Felt his level of education was not enough to fully advocate, and was concerned about manipulation of community people.
• Felt that information was not moving to everyone and that treatment activists were very involved in finding new drugs
• Some TAG members were talking science in a way that sounded like researchers.
• Felt fortunate that he started treatment in 1995

Personal Treatment Choices

• Robert got sick in 1995, and decided to start taking medication.
• The treatment advocacy that came out of ACT UP is what has presented itself as all of the drugs that are available
• Drugs are so expensive that it makes it very difficult for people to access

Missed Opportunities

• A discussion that ACT UP didn’t engage in was about socioeconomic issues.
• People in the united states don’t want to talk about class
• Noted the high number of college-educated gay men in ACT UP.
• Robert recognizes that he helps to initiate stuff but he doesn’t stay around to make sure it stays around.
• Gay bars were called the great equalizers

Social and Sexual Dynamics Revisited

• Comfort level influences who people socialize and have sex with; for some, working and socializing with the same individuals is challenging.
• Robert thinks that it is important to talk to sex partners about being HIV-positive
• Years later, found out that people were pissed off about his being so open

Concerns Regarding Prevention

• ACT Up was always about treatment, not stopping people from getting infected
• There were people who disclosed their status, and people who did not disclose their statuses
• One reason for disclosing was to see someone who looked fairly healthy and say that they are a person with AIDS

Community-Based Work and Legacies

• Now works with Moises Agosto at the Minority Task Force, using knowledge gained from ACT UP.
• Recognizes ACT UP’s achievement in mobilizing people around a clear intention.

Housing Initiatives

• Minority Task Force provided transitional housing; Housing Works was the first organization that only did housing.
• ACT UP was considered a white organization.

Gran Fury

• Joined Gran Fury after speaking out about the lack of people of color in TAG and was invited to join the group
• Gran Fury got approached by Museo Del Barrio to do an installation on HIV and AIDS.
• Debbie Levine used to work at Creative time and said that they could get someone to do something about AIDS in El Museo Del Barrio
• Recalls meeting Tom Kalin at a conference, where he spoke out about the lack of diversity in Gran Fury.

Group Dynamics and Collaborative Art

• Robert enjoyed producing in Gran Fury and worked as the person who didn’t mind speaking publicly about projects.
• Working in a collaborative project was new to Robert and there were a lot of arguments about production
• Gran Fury was sort of in the right place at the right time
• Became art world celebrities very quickly
• Hard to maintain balance
• People did not know who the fuck Gran Fury was
• Donald Moffet and Loring had shows in Wessel O'Connor.

"Kissing Doesn't Kill: Greed and Indifference Do"

• Gran Fury created the piece "Kissing Doesn't Kill" as part of "Art Across America" to mimic a Benetton’s ad to address AIDS.
• The piece involved three couples:
  • An Interracial Couple: Robert Vazquez-Pacheco and Heidi Dorow
  • Two Men: Mark Simpson and Jose Fidelino
  • Two Women: Julie Tolentino and Lola Flash
• The message was that greed and indifference, not kissing, caused deaths from aids.
• The piece was photographed and filmed, and the footage was used in a short video; Tom was the film director, he shot it
• The poster went up on busses in New York and Chicago
• Received defacing in Chicago

Collective Process

• Gran Fury operated as a collective, with input from all members.
• There was tension because the work was very seductive in the art world
• Recognized the group's fine line between art and activism.
• The collective was fortunate to receive funding when AIDS artwork was scarce.

Achievements and Legacies of ACT UP

• Robert thinks that ACT UP’s achievement was its ability to mobilize a group of people with a very clear intention.
• Legacy includes empowering people with knowledge and sparking subsequent activism.
• ACT UP drew inspiration from previous movements, such as the women’s health movement.

Successes and Challenges of ACT UP

• Robert thinks that success depends on what you’re looking at; some were very successful, and some wasn’t good.
• The political climate is now much more fucked up than in the beginning of ACT UP
• The kind of activism in ACT UP needs to be more sophisticated to deal with the increasing political divide.
• Robert is thinking about going back to ACT UP