Post by Nadica (She/Her) on Sept 17, 2024 2:37:51 GMT
A Twitter controversy over Covid-19 led to a culture of distrust and suppression within ACT UP New York - Published Sept 14, 2024
By Justine Barron
The AIDS Coalition to Unleash Power New York (ACT UP), the flagship branch of the historic and global AIDS organization, attracted controversy on social media this summer around statements related to the Covid-19 pandemic. On July 19, ACT UP angered disabled and Covid cautious people with a Twitter thread that aligned people who criticize others for not wearing a mask with the historic criminalization of HIV patients. As many pointed out in response, people who wear masks are the vulnerable marginalized group currently being stigmatized and criminalized, not unmasked people who spread airborne disease. The thread also offered the nihilistic and deadly proposition that “people cannot prevent themselves from getting Covid in perpetuity.”
A week and a half later, ACT UP posted an apology for those tweets, which cited “eugenics,” “institutionalized ableism,” and “white supremacy” within the organization. The apology was ridiculed by some prominent queer and leftist accounts. A portrayal emerged of ACT UP being taken over by online zealots, often described in ableist terms, like “psychotic,” “freaks,” and “weird hypochondriacs.”
“I’m so sad that people are taking the apology as ‘ACT UP was bullied,’” said one member of ACT UP’s Covid-19 working group, which wrote the apology.
Behind the scenes, the real story around these tweets and their fallout is more complex and still ongoing. It’s about a relatively small group of long-time ACT UP members (of all ages) fighting to hold onto control over the organization at the expense of expanding its base, inclusivity, and even its own bylaws and principles. While not the majority at every meeting, these members have contributed to a culture of fear and distrust within the organization. They have also, at times, stigmatized or belittled being sick, angry, and loud—ironic, given ACT UP’s famed legacy.
More than 15 current and former ACT UP members helped tell this story in interviews. Most requested anonymity, either to keep working with the organization in good faith or to avoid harassment, which has been happening around this controversy. Sources also shared audio, emails, screenshots, and other evidence.
While ACT UP’s mission is focused on HIV/AIDS, the organization does allow members to pursue other goals under its purview. The ACT UP New York website devotes significant attention to the Palestinian cause. But ACT UP hasn’t easily found internal consensus around Covid. This is perhaps surprising, given that Covid is another viral pandemic, one that disproportionately disables and kills HIV-positive people.
“It doesn’t surprise me,” one long-time New York-based queer activist said about HIV activists buying into the “disinformation of the Biden administration on Covid.” This activist cited a “legacy of stigma and trauma” in the HIV community around illness and disability, a consequence of historic isolation, discrimination, survivorship bias, and more. For additional context, The Sick Times recently reported on the HIV community’s lack of attention to Long Covid.
ACT UP has been dealing with understandable tension between two disease communities that have distinct ideologies shaped by their specific pathologies and social contexts. And, like many disease-specific organizations, it hasn’t integrated itself into the broader disability community. It would take meaningful effort to resolve these tensions, but some long-time members are actively resisting that work.
Twittergate
With the July 19 thread and some other tweets that day, ACT UP was taking sides in a heated Twitter debate that was already rife with misconstruals and straw man arguments. Briefly, it started when writer Ashley Reese minimized Covid’s harms, quote-tweeting another account. That person then pointed out that Reese had transmitted Covid to her terminally ill husband, which Reese had previously acknowledged. That person was accused of calling her a “murderer,” which didn’t happen. Unfortunately, a couple of people did take the discourse that far, giving ACT UP and others mileage to portray all Covid conscious people involved in the conversation as extremists.
“They should have never fucking weighed in on Ashley Reese,” one ACT UP member stated, a sentiment shared by many other members.
ACT UP’s initial thread was a surprise to many in and out of the organization. Internally, it had a Covid-19 working group, which had attracted many Long Covid patients and Covid cautious people to the organization. It had also instituted a mask requirement at meetings and actions. Externally, the organization promoted Covid mitigation on social media. Some disabled people described feeling “heartbroken” and “demoralized” by the tweets. Another ally was lost, after years of steady abandonment by leftist organizations.
As it turned out, the posts were not official statements. Casey Elise, an ACT UP member, identified herself on Twitter as one of the thread’s co-authors. She had partnered with a member of the organization’s social media team who had access to its accounts.
Disabled activists put together threads of Elise’s recent public statements on Covid in order to understand the motivation behind the thread (disclaimer: I was among them). On Instagram, Elise stated that immunocompromised people could “go to [the] Govball and take off your mask without getting sick”—and that it was “ableist” to say otherwise. Observers wondered if she was a spokesperson for ACT UP or a “rogue agent” using its account.
In fact, Elise’s posts came as a shock to many ACT UP members who had worked alongside her in the Covid-19 working group and never anticipated that she had those views. She had a popular Tik Tok account that discussed Covid risks.
From early on, it was clear that there was dissent within ACT UP over the tweets. “The thread in question was written and released without the knowledge or consensus of the ACT UP NY C19 Working Group,” one member wrote in an email response to a media inquiry I sent the organization.
Yet, another member, Jason Rosenberg took to Twitter to support the thread while attacking me. He accused me of “surveilling” Elise, the kind language that others were also using to describe people sharing her comments, which were publicly available for anyone to see. Rosenberg has a substantial following and, at the time, listed ACT UP in his Twitter profile.
Facing backlash, Elise announced her departure from Covid activism and subsequently left ACT UP. Two weeks later, she posted a long apology on Instagram for her “poorly thought-out” posts and for being “defensive and dismissive.” She cited “coming to terms with being newly immunocompromised.”
I reached out to Elise via Instagram. “I deeply regret saying I plan to leave COVID activism,” she wrote in response. She plans to “approach it differently,” by focusing more on her community. She clarified that her intention has been to promote “understanding that you can’t control how people behave and the risks they take.” In her apology, she recognized that her “impact” didn’t match her “intention.”
ACT UP made it easy for Elise to use its prominent, well-respected account to post tweets that she later understood to be harmful in ways. The tweets created an uproar, upsetting hundreds of people, at least. The tweets also seem to have been in violation of the organization’s bylaws, which state, “The Social Media Team must refrain from unilaterally taking any position on any issue.”
Nevertheless, the tweets weren’t removed as easily as they were posted. That is partly because of ACT UP’s structure, but it has more to do with who is making key decisions internally and how those decisions are made. The organization’s social media and emergency response teams could have removed the tweets at any time.
Aftermath: Dissent and Suppression
Among HIV/AIDS organizations, ACT UP is relatively small in contrast to its legacy and impact, with extremely fluid membership and participation. Local branches operate independently with no paid staff.
In theory, “All ACT UP members are leaders as we resist the traditional hierarchies and bureaucracies of other organizations,” its website states. Membership is granted after only one meeting, and voting membership after three meetings or actions, per the bylaws.
In practice, ACT UP New York operates differently, at least of late. Some long-time members have more power and status in the organization by virtue of their longevity and from holding multiple elected positions on teams or as meeting facilitators. Some of them are members of the Board of Directors, which was seemingly established as a legal requirement when ACT UP became a 501(c)4 tax-exempt organization in 2023, per its public tax return. The organization declined to answer questions about how its board was selected and operates.
Generally, this group of long-time members hasn’t always been understanding about disability concerns, including problems with the Twitter thread. Since the Twitter controversy, some have been using their power and status to push back on reform and transparency, including by arbitrarily changing or ignoring bylaws at whim.
These power dynamics were apparent in a July 29 general meeting held over Zoom, which some members have described as “bizarre,” “hostile,” “fascistic,” and “traumatizing.”
That meeting seemed to be a reaction to the prior week’s Zoom meeting, on July 22, which took place while the controversial tweets were still live on Twitter. That evening, an influx of new and returning members, some from allied organizations, showed up to air their grievances about the tweets and demand accountability. Angry voices in the Zoom chat called out ableism while others spoke. It was a volatile meeting, but it also ended with a unanimous vote in favor of removing the tweets and posting an initial brief apology. Numerous attendees tweeted about the meeting, as “Disability Twitter” was closely observing how ACT UP would handle the controversy.
The July 22 meeting exposed a need for more dialogue, consensus-building, and education around Covid within ACT UP. But some long-time members chose a very different approach at the next week’s meeting.
On July 29, Brandon Cuicchi, one of the meeting’s facilitators, oversaw an agenda that started with over an hour of speeches—a “dog-and-pony show,” as one member called it. Long-time members gave presentations on ACT UP’s policies and history, the history of HIV criminalization, the organization’s handling of Covid early in the pandemic (“pre-vaccines”), and the like. Most of the speeches seemed like a response to criticism of the controversial thread, even though it had already been taken down.
The presentations seemed better fit for a press conference or fundraising event than the large audience of disabled and Covid cautious people who had returned to discuss the longer apology drafted by the Covid-19 working group.
“A presentation about how ‘great’ act up has been re: covid while people ill with long covid are present because of harm done to them by act up is cruel and offensive,” one member posted in the Zoom chat. Others posted that they would have appreciated hearing more about HIV history on any other night.
The heavy-handed format and tone was extremely unusual. ACT UP meetings usually include brief discussions on current issues and actions, with breakout meetings for working groups, as recent agendas show. That’s been the standard format, going back awhile.
Throughout the July 29 meeting, some long-time members chastised people who used the Zoom chat, describing it as rude and disrespectful to the speakers. Yet, they also freely used the same function to make their own points. The focus on “decorum,” one member said, was a kind of “microaggression.” An organization founded on sick and neglected people expressing outrage was now coming down hard on the same.
Members were also warned that anyone who tweeted about the meeting would be automatically kicked out and “likely suspended.”
The discussion about the Twitter apology was relegated to the last 30 minutes of the meeting, and members were only given one minute each to speak on it. “They were intentionally sidelining us,” as one member described it. Speakers crammed in their thoughts about the apology, the presentations, and their physical challenges staying that long in the meeting, which ran over.
Bridgette Jones, a young woman with Long Covid and other chronic illnesses who joined ACT UP before the controversy, spoke passionately, while lying in bed, about her fears of being put in a nursing home, her risks of dying, and her life in “year five of quarantine.” Her testimony countered the earlier presentation that portrayed Covid as a mostly past event.
Cuicchi and some other long-term members, who had been congratulating each other on the earlier presentations and demanding respect, cut off these speakers and gave them little to no validation. Jones might have been more at home in the 1980s ACT UP than in 2024.
In an interview, Jones said, “Getting [this treatment] from the group hurts precisely because it mimics almost exactly the kind of willful unseeing that has led to both my medical neglect and social abandonment.”
“The hostility was so palpable, and I think it really did hurt,” said another member named Miranda, who also joined ACT UP before the controversy and recently left. She called the meeting “surreal” and “like being in detention.” She accused ACT UP leaders of “weaponizing elders against another disease community.”
The meeting ended with a vote over the longer apology drafted by the Covid-19 working group. ACT UP’s emergency response team (ERT) had rejected posting the draft earlier that week because of the language of “eugenics apologia” and “white supremacy.” In an email to the working group, the ERT wrote that such language “falsely implies that our actions support harmful ideologies.” The apology went to a floor vote.
The vote was interrupted more than once by long-time members who seemed panicked over the likelihood that it would pass. So they began changing the bylaws. Suddenly, voting membership required attending three general meetings, not including working group meetings. New members, since the controversy, couldn’t vote. Then, a long-time member decided that any abstention votes would be added to the votes against the apology, again contrary to the bylaws. Someone in the chat said they were trying to pull “a Florida,” referring to the 2020 presidential election. Even with those arbitrary changes to the rules, the apology passed at 51%, with 19% abstained.
After the apology went up, Rosenberg tweeted, “ACT UP was infiltrated by bad faith actors that have a limited understanding of how the group operates.” Yet, the apology was written by Covid-19 working group members who were active in the organization before the controversial tweets. That group had organized actions and helped shape ACT UP’s social media presence. Was Rosenberg suggesting the organization was already “infiltrated” before the recent Twitter drama? He has not responded to requests for comment.
The next Monday, some Covid-19 working group members had to miss the weekly ACT UP meeting because they were traveling to Nassau County to testify at a hearing for its proposed mask ban. In an eerie call-back to ACT UP’s July 29 meeting, county officials allowed supporters of the ban to speak first and for longer. Speakers in opposition, including many disabled people in masks, were relegated to the end of the meeting and their microphones were constantly cut off.
Some of ACT UP’s long-time members have spoken out against Republican-led mask bans. But they inadvertently foreshadowed the way that Nassau County officials treated disabled people, who showed up and demanded to be heard.
A Culture of Distrust
After the longer apology was posted, a handful of new and returning members stuck around, hoping to continue their advocacy efforts around HIV and Covid. They were not welcomed by everyone.
Some long-time members focused meetings around finger-pointing and suppression efforts. New members were called “infiltrators,” despite most having histories of queer activism. They weren’t being given access to Zoom links for meetings. Some were sanctioned for tweeting about their first meeting, on July 22, before the rule was ever communicated to them. Rosenberg was not sanctioned for his tweets about the July 29 meeting.
“Do we want the community to join, or do we not?” Miranda asked, noting how meetings were advertised as public at the time.
When it came time for elections for six-month positions, Cuicchi suddenly forced a vote on a new rule to keep people outside of the New York City area from running for positions, as some new members lived elsewhere. According to multiple sources, members weren’t warned that this vote was coming. It ended up affecting people who had been with the organization for a while.
To justify the new rule, some long-time members claimed that elected members should be able to serve in-person, without consideration of accessibility. Similarly, members have been chastised for using Zoom chat, having their cameras off, or filming in the dark, all of which are well-known accessibility tools for many disabilities. These new rules have been arbitrarily enforced.
Then, on August 26, a newer member was accused, with no proof, of having leaked recordings from a meeting to a reporter. I had just reached out to the organization with questions and mentioned having obtained audio from the July 29 public meeting. The accused member was not my source for the audio, but that person was suspended from ACT UP anyway, with none of the grievance process called for in the bylaws.
In my outreach email, I asked why ACT UP was so distrustful of new members—if the group’s paranoia was “heightened” due to previous incidents with disruptive members, including one who filed a lawsuit against the organization. The organization declined to respond.
Some older members with HIV have described, in meetings, feelings that are understandable. They have shared about feeling a lack of trust in and respect from the new members. They have expressed concern that their organization might start to neglect their needs. Yet, some have also admitted to not being on Twitter and/or not understanding first-hand all of the accusations being flung around.
Miranda and several others have left or backed away from the organization in the last two months due to what they perceive is a “hostile” environment, especially towards Covid and disability activists. Another such member described ACT UP as more concerned with “legacy” than “activism.”
At times, long-time ACT UP members have been explicit about their hostility towards Covid activism. Victor Li, a member of the board of directors who holds multiple elected positions, recently commented, “I thought you hypochondriacs were supposed to be against ‘eugenics’, lol,” in response to a pro-mask account on an ACT UP New York Instagram post. The person was talking about 9/11 and hadn’t mentioned Covid or masking at all.
Still, there are small glimmers of hope within ACT UP New York. The Covid-19 working group is still active. The organization’s mask mandate passed with minimal pushback, and the longer apology is still live on social media. A meeting was scheduled to discuss similarities and differences between Covid and HIV. There are even some older members pushing back on the arbitrary and authoritarian actions of late.
In all, the Covid pandemic has presented ACT UP with an opportunity to build long overdue intersectionality among HIV and disability communities. Those intersections are happening already in medicine, as researchers are trialing HIV drugs to treat Long Covid. The problem seems to be that some long-time members with relative power behave as if they have nothing to learn about disability or Covid. “There’s room for [that learning],” one member said, “but they would need to be spoon-fed it.”
NOTE
Note: ACT UP declined to respond to numerous questions. It did offer a statement, which it requested be printed in full:
This story is partially based on information interpreted from an unpermitted recording of one of our private meetings where ACT UP NY members regularly disclose personal health information including their HIV status. For decades and today, people with HIV and their advocates have faced loss of family, housing, healthcare, job, and loved ones due to unpermitted disclosure of their HIV+ status or the advocacy work that they do around HIV. ACT UP NY does not condone recording of meetings or distribution of any recordings without members’ consent.
To protect the privacy of members, this article only names people who chose to be on the record or have previously affiliated themselves with ACT UP New York in the media.
By Justine Barron
The AIDS Coalition to Unleash Power New York (ACT UP), the flagship branch of the historic and global AIDS organization, attracted controversy on social media this summer around statements related to the Covid-19 pandemic. On July 19, ACT UP angered disabled and Covid cautious people with a Twitter thread that aligned people who criticize others for not wearing a mask with the historic criminalization of HIV patients. As many pointed out in response, people who wear masks are the vulnerable marginalized group currently being stigmatized and criminalized, not unmasked people who spread airborne disease. The thread also offered the nihilistic and deadly proposition that “people cannot prevent themselves from getting Covid in perpetuity.”
A week and a half later, ACT UP posted an apology for those tweets, which cited “eugenics,” “institutionalized ableism,” and “white supremacy” within the organization. The apology was ridiculed by some prominent queer and leftist accounts. A portrayal emerged of ACT UP being taken over by online zealots, often described in ableist terms, like “psychotic,” “freaks,” and “weird hypochondriacs.”
“I’m so sad that people are taking the apology as ‘ACT UP was bullied,’” said one member of ACT UP’s Covid-19 working group, which wrote the apology.
Behind the scenes, the real story around these tweets and their fallout is more complex and still ongoing. It’s about a relatively small group of long-time ACT UP members (of all ages) fighting to hold onto control over the organization at the expense of expanding its base, inclusivity, and even its own bylaws and principles. While not the majority at every meeting, these members have contributed to a culture of fear and distrust within the organization. They have also, at times, stigmatized or belittled being sick, angry, and loud—ironic, given ACT UP’s famed legacy.
More than 15 current and former ACT UP members helped tell this story in interviews. Most requested anonymity, either to keep working with the organization in good faith or to avoid harassment, which has been happening around this controversy. Sources also shared audio, emails, screenshots, and other evidence.
While ACT UP’s mission is focused on HIV/AIDS, the organization does allow members to pursue other goals under its purview. The ACT UP New York website devotes significant attention to the Palestinian cause. But ACT UP hasn’t easily found internal consensus around Covid. This is perhaps surprising, given that Covid is another viral pandemic, one that disproportionately disables and kills HIV-positive people.
“It doesn’t surprise me,” one long-time New York-based queer activist said about HIV activists buying into the “disinformation of the Biden administration on Covid.” This activist cited a “legacy of stigma and trauma” in the HIV community around illness and disability, a consequence of historic isolation, discrimination, survivorship bias, and more. For additional context, The Sick Times recently reported on the HIV community’s lack of attention to Long Covid.
ACT UP has been dealing with understandable tension between two disease communities that have distinct ideologies shaped by their specific pathologies and social contexts. And, like many disease-specific organizations, it hasn’t integrated itself into the broader disability community. It would take meaningful effort to resolve these tensions, but some long-time members are actively resisting that work.
Twittergate
With the July 19 thread and some other tweets that day, ACT UP was taking sides in a heated Twitter debate that was already rife with misconstruals and straw man arguments. Briefly, it started when writer Ashley Reese minimized Covid’s harms, quote-tweeting another account. That person then pointed out that Reese had transmitted Covid to her terminally ill husband, which Reese had previously acknowledged. That person was accused of calling her a “murderer,” which didn’t happen. Unfortunately, a couple of people did take the discourse that far, giving ACT UP and others mileage to portray all Covid conscious people involved in the conversation as extremists.
“They should have never fucking weighed in on Ashley Reese,” one ACT UP member stated, a sentiment shared by many other members.
ACT UP’s initial thread was a surprise to many in and out of the organization. Internally, it had a Covid-19 working group, which had attracted many Long Covid patients and Covid cautious people to the organization. It had also instituted a mask requirement at meetings and actions. Externally, the organization promoted Covid mitigation on social media. Some disabled people described feeling “heartbroken” and “demoralized” by the tweets. Another ally was lost, after years of steady abandonment by leftist organizations.
As it turned out, the posts were not official statements. Casey Elise, an ACT UP member, identified herself on Twitter as one of the thread’s co-authors. She had partnered with a member of the organization’s social media team who had access to its accounts.
Disabled activists put together threads of Elise’s recent public statements on Covid in order to understand the motivation behind the thread (disclaimer: I was among them). On Instagram, Elise stated that immunocompromised people could “go to [the] Govball and take off your mask without getting sick”—and that it was “ableist” to say otherwise. Observers wondered if she was a spokesperson for ACT UP or a “rogue agent” using its account.
In fact, Elise’s posts came as a shock to many ACT UP members who had worked alongside her in the Covid-19 working group and never anticipated that she had those views. She had a popular Tik Tok account that discussed Covid risks.
From early on, it was clear that there was dissent within ACT UP over the tweets. “The thread in question was written and released without the knowledge or consensus of the ACT UP NY C19 Working Group,” one member wrote in an email response to a media inquiry I sent the organization.
Yet, another member, Jason Rosenberg took to Twitter to support the thread while attacking me. He accused me of “surveilling” Elise, the kind language that others were also using to describe people sharing her comments, which were publicly available for anyone to see. Rosenberg has a substantial following and, at the time, listed ACT UP in his Twitter profile.
Facing backlash, Elise announced her departure from Covid activism and subsequently left ACT UP. Two weeks later, she posted a long apology on Instagram for her “poorly thought-out” posts and for being “defensive and dismissive.” She cited “coming to terms with being newly immunocompromised.”
I reached out to Elise via Instagram. “I deeply regret saying I plan to leave COVID activism,” she wrote in response. She plans to “approach it differently,” by focusing more on her community. She clarified that her intention has been to promote “understanding that you can’t control how people behave and the risks they take.” In her apology, she recognized that her “impact” didn’t match her “intention.”
ACT UP made it easy for Elise to use its prominent, well-respected account to post tweets that she later understood to be harmful in ways. The tweets created an uproar, upsetting hundreds of people, at least. The tweets also seem to have been in violation of the organization’s bylaws, which state, “The Social Media Team must refrain from unilaterally taking any position on any issue.”
Nevertheless, the tweets weren’t removed as easily as they were posted. That is partly because of ACT UP’s structure, but it has more to do with who is making key decisions internally and how those decisions are made. The organization’s social media and emergency response teams could have removed the tweets at any time.
Aftermath: Dissent and Suppression
Among HIV/AIDS organizations, ACT UP is relatively small in contrast to its legacy and impact, with extremely fluid membership and participation. Local branches operate independently with no paid staff.
In theory, “All ACT UP members are leaders as we resist the traditional hierarchies and bureaucracies of other organizations,” its website states. Membership is granted after only one meeting, and voting membership after three meetings or actions, per the bylaws.
In practice, ACT UP New York operates differently, at least of late. Some long-time members have more power and status in the organization by virtue of their longevity and from holding multiple elected positions on teams or as meeting facilitators. Some of them are members of the Board of Directors, which was seemingly established as a legal requirement when ACT UP became a 501(c)4 tax-exempt organization in 2023, per its public tax return. The organization declined to answer questions about how its board was selected and operates.
Generally, this group of long-time members hasn’t always been understanding about disability concerns, including problems with the Twitter thread. Since the Twitter controversy, some have been using their power and status to push back on reform and transparency, including by arbitrarily changing or ignoring bylaws at whim.
These power dynamics were apparent in a July 29 general meeting held over Zoom, which some members have described as “bizarre,” “hostile,” “fascistic,” and “traumatizing.”
That meeting seemed to be a reaction to the prior week’s Zoom meeting, on July 22, which took place while the controversial tweets were still live on Twitter. That evening, an influx of new and returning members, some from allied organizations, showed up to air their grievances about the tweets and demand accountability. Angry voices in the Zoom chat called out ableism while others spoke. It was a volatile meeting, but it also ended with a unanimous vote in favor of removing the tweets and posting an initial brief apology. Numerous attendees tweeted about the meeting, as “Disability Twitter” was closely observing how ACT UP would handle the controversy.
The July 22 meeting exposed a need for more dialogue, consensus-building, and education around Covid within ACT UP. But some long-time members chose a very different approach at the next week’s meeting.
On July 29, Brandon Cuicchi, one of the meeting’s facilitators, oversaw an agenda that started with over an hour of speeches—a “dog-and-pony show,” as one member called it. Long-time members gave presentations on ACT UP’s policies and history, the history of HIV criminalization, the organization’s handling of Covid early in the pandemic (“pre-vaccines”), and the like. Most of the speeches seemed like a response to criticism of the controversial thread, even though it had already been taken down.
The presentations seemed better fit for a press conference or fundraising event than the large audience of disabled and Covid cautious people who had returned to discuss the longer apology drafted by the Covid-19 working group.
“A presentation about how ‘great’ act up has been re: covid while people ill with long covid are present because of harm done to them by act up is cruel and offensive,” one member posted in the Zoom chat. Others posted that they would have appreciated hearing more about HIV history on any other night.
The heavy-handed format and tone was extremely unusual. ACT UP meetings usually include brief discussions on current issues and actions, with breakout meetings for working groups, as recent agendas show. That’s been the standard format, going back awhile.
Throughout the July 29 meeting, some long-time members chastised people who used the Zoom chat, describing it as rude and disrespectful to the speakers. Yet, they also freely used the same function to make their own points. The focus on “decorum,” one member said, was a kind of “microaggression.” An organization founded on sick and neglected people expressing outrage was now coming down hard on the same.
Members were also warned that anyone who tweeted about the meeting would be automatically kicked out and “likely suspended.”
The discussion about the Twitter apology was relegated to the last 30 minutes of the meeting, and members were only given one minute each to speak on it. “They were intentionally sidelining us,” as one member described it. Speakers crammed in their thoughts about the apology, the presentations, and their physical challenges staying that long in the meeting, which ran over.
Bridgette Jones, a young woman with Long Covid and other chronic illnesses who joined ACT UP before the controversy, spoke passionately, while lying in bed, about her fears of being put in a nursing home, her risks of dying, and her life in “year five of quarantine.” Her testimony countered the earlier presentation that portrayed Covid as a mostly past event.
Cuicchi and some other long-term members, who had been congratulating each other on the earlier presentations and demanding respect, cut off these speakers and gave them little to no validation. Jones might have been more at home in the 1980s ACT UP than in 2024.
In an interview, Jones said, “Getting [this treatment] from the group hurts precisely because it mimics almost exactly the kind of willful unseeing that has led to both my medical neglect and social abandonment.”
“The hostility was so palpable, and I think it really did hurt,” said another member named Miranda, who also joined ACT UP before the controversy and recently left. She called the meeting “surreal” and “like being in detention.” She accused ACT UP leaders of “weaponizing elders against another disease community.”
The meeting ended with a vote over the longer apology drafted by the Covid-19 working group. ACT UP’s emergency response team (ERT) had rejected posting the draft earlier that week because of the language of “eugenics apologia” and “white supremacy.” In an email to the working group, the ERT wrote that such language “falsely implies that our actions support harmful ideologies.” The apology went to a floor vote.
The vote was interrupted more than once by long-time members who seemed panicked over the likelihood that it would pass. So they began changing the bylaws. Suddenly, voting membership required attending three general meetings, not including working group meetings. New members, since the controversy, couldn’t vote. Then, a long-time member decided that any abstention votes would be added to the votes against the apology, again contrary to the bylaws. Someone in the chat said they were trying to pull “a Florida,” referring to the 2020 presidential election. Even with those arbitrary changes to the rules, the apology passed at 51%, with 19% abstained.
After the apology went up, Rosenberg tweeted, “ACT UP was infiltrated by bad faith actors that have a limited understanding of how the group operates.” Yet, the apology was written by Covid-19 working group members who were active in the organization before the controversial tweets. That group had organized actions and helped shape ACT UP’s social media presence. Was Rosenberg suggesting the organization was already “infiltrated” before the recent Twitter drama? He has not responded to requests for comment.
The next Monday, some Covid-19 working group members had to miss the weekly ACT UP meeting because they were traveling to Nassau County to testify at a hearing for its proposed mask ban. In an eerie call-back to ACT UP’s July 29 meeting, county officials allowed supporters of the ban to speak first and for longer. Speakers in opposition, including many disabled people in masks, were relegated to the end of the meeting and their microphones were constantly cut off.
Some of ACT UP’s long-time members have spoken out against Republican-led mask bans. But they inadvertently foreshadowed the way that Nassau County officials treated disabled people, who showed up and demanded to be heard.
A Culture of Distrust
After the longer apology was posted, a handful of new and returning members stuck around, hoping to continue their advocacy efforts around HIV and Covid. They were not welcomed by everyone.
Some long-time members focused meetings around finger-pointing and suppression efforts. New members were called “infiltrators,” despite most having histories of queer activism. They weren’t being given access to Zoom links for meetings. Some were sanctioned for tweeting about their first meeting, on July 22, before the rule was ever communicated to them. Rosenberg was not sanctioned for his tweets about the July 29 meeting.
“Do we want the community to join, or do we not?” Miranda asked, noting how meetings were advertised as public at the time.
When it came time for elections for six-month positions, Cuicchi suddenly forced a vote on a new rule to keep people outside of the New York City area from running for positions, as some new members lived elsewhere. According to multiple sources, members weren’t warned that this vote was coming. It ended up affecting people who had been with the organization for a while.
To justify the new rule, some long-time members claimed that elected members should be able to serve in-person, without consideration of accessibility. Similarly, members have been chastised for using Zoom chat, having their cameras off, or filming in the dark, all of which are well-known accessibility tools for many disabilities. These new rules have been arbitrarily enforced.
Then, on August 26, a newer member was accused, with no proof, of having leaked recordings from a meeting to a reporter. I had just reached out to the organization with questions and mentioned having obtained audio from the July 29 public meeting. The accused member was not my source for the audio, but that person was suspended from ACT UP anyway, with none of the grievance process called for in the bylaws.
In my outreach email, I asked why ACT UP was so distrustful of new members—if the group’s paranoia was “heightened” due to previous incidents with disruptive members, including one who filed a lawsuit against the organization. The organization declined to respond.
Some older members with HIV have described, in meetings, feelings that are understandable. They have shared about feeling a lack of trust in and respect from the new members. They have expressed concern that their organization might start to neglect their needs. Yet, some have also admitted to not being on Twitter and/or not understanding first-hand all of the accusations being flung around.
Miranda and several others have left or backed away from the organization in the last two months due to what they perceive is a “hostile” environment, especially towards Covid and disability activists. Another such member described ACT UP as more concerned with “legacy” than “activism.”
At times, long-time ACT UP members have been explicit about their hostility towards Covid activism. Victor Li, a member of the board of directors who holds multiple elected positions, recently commented, “I thought you hypochondriacs were supposed to be against ‘eugenics’, lol,” in response to a pro-mask account on an ACT UP New York Instagram post. The person was talking about 9/11 and hadn’t mentioned Covid or masking at all.
Still, there are small glimmers of hope within ACT UP New York. The Covid-19 working group is still active. The organization’s mask mandate passed with minimal pushback, and the longer apology is still live on social media. A meeting was scheduled to discuss similarities and differences between Covid and HIV. There are even some older members pushing back on the arbitrary and authoritarian actions of late.
In all, the Covid pandemic has presented ACT UP with an opportunity to build long overdue intersectionality among HIV and disability communities. Those intersections are happening already in medicine, as researchers are trialing HIV drugs to treat Long Covid. The problem seems to be that some long-time members with relative power behave as if they have nothing to learn about disability or Covid. “There’s room for [that learning],” one member said, “but they would need to be spoon-fed it.”
NOTE
Note: ACT UP declined to respond to numerous questions. It did offer a statement, which it requested be printed in full:
This story is partially based on information interpreted from an unpermitted recording of one of our private meetings where ACT UP NY members regularly disclose personal health information including their HIV status. For decades and today, people with HIV and their advocates have faced loss of family, housing, healthcare, job, and loved ones due to unpermitted disclosure of their HIV+ status or the advocacy work that they do around HIV. ACT UP NY does not condone recording of meetings or distribution of any recordings without members’ consent.
To protect the privacy of members, this article only names people who chose to be on the record or have previously affiliated themselves with ACT UP New York in the media.