ACT UP NY's Response to Being Exposed
Also: medical examiners using disability to cover for police, how mask bans function, and media ableism. Updates on some recent articles.
I haven’t been posting here as much as I had planned because I took my reporting on disability to various media outlets. I’d like to share some of the articles I wrote this summer, as well as use this space to give an update on a piece about ACT UP New York that generated some email responses from the organization in question, which I share below.
Before I get to ACT UP, some articles worth your time and attention, kindly:
“How Deep is the Scandal at the Maryland Medical Examiner’s Office?” in The Appeal: This was a major in-depth investigation of corruption at the MD ME’s office when it comes to deaths in police custody. Among other findings, I discovered how MEs blame any and all pre-existing conditions (even mental illnesses) for deaths caused by police. It was really heartbreaking to see this in autopsy report after report.
“When Does Concern About Presidential Fitness Become Media Ableism?” in Fairness and Accuracy in Reporting: I looked at how media outlets were talking about Biden and Trump’s fitness for office. There are reasonable questions to ask about age and ability, and then there’s ableism. I discuss how the media makes it unsafe for disabled and marginalized people to run for office and its particularly bizarre fetishization of presidential strength.
“Perfect Storm of Criminalization: Analyzing Mask Bans,” in The Sick Times: This article provides a political and legal analysis of mask bans, including a list of bans and proposed bans per state. I emphasize that 21 states already have laws banning masks, and that it’s political rhetoric more than laws that will influence how mask bans are enforced (even in states without any legal bans). I also argue that mask bans are very much about Covid minimization, regardless of the (inconsistent, illogical) political justifications.
ACT UP NY and the story that never ends
“A Twitter controversy over Covid-19 led to a culture of distrust and suppression within ACT UP New York,” in Disability Visibility.
On September 17, I reported on some behind-the-scenes conflict going on within ACT UP’s New York branch following a July Twitter controversy. The conflict initially centered around Covid advocacy but it became a power struggle, with some long-time members using their status and positioning in ways that others members described as hostile. I also reported on bylaws seemingly being changed at whim.
The drama has continued, both in ACT UP meetings and in emails to me, some of which I share below. I’d recommend reading the article above to give what follows some context, if you’re interested.
Most of the new drama has to do with members getting suspended. My original story culminated with ACT UP suspending a newish member based on the (unsubstantiated and false) belief that she had leaked audio of a meeting to me. That member identified herself on Twitter as Emily Johnson. She had joined around ACT UP around the Twitter controversy.
Yet, ACT UP doesn’t seem to be consistently clear about Emily being the source of the leak. One member, Victor Li, who holds multiple elected positions on teams and sits on the board of directors, demanded that I disclose my source of the audio and threatened legal action against me if I don’t.
This story has been something else to report. I’ve encountered hostile media engagement before, including legal threats, but this has been different. Some members have been explicit and public with personal attacks and threats (on Twitter, on the record). It’s interesting coming from an organization so concerned about public perception (which is apparent in emails, chat logs, meetings, etc.)
Since I published, sources told me that another member, Bridgette Jones, was suspended. As I mentioned on Twitter, her suspension was reportedly related to her having spoken on the record with me. Here’s what she shared in the article (scroll over for alt text):
![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.”](https://substackcdn.com/image/fetch/$s_!hLV6!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fd61c27af-d72e-4954-9076-910972e1e284_538x292.png "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.”")
I’ll admit, I was surprised that Jones was suspended. More than a dozen other members asked for anonymity, but she went on the record and that was held against her. Also, many of ACT UP’s long-time members have appeared in the press talking about the organization. Her statements appear pretty benign. She also isn’t a new member and had just been elected as a facilitator. And she’s known to be very sick and mobility-impaired. Johnson is too. So that’s two chronically sick women with severe Long Covid/MECFS who have been recently suspended.
I did hear that one issue had to do with Jones possibly not disclosing that she had spoken to me the first time everyone was asked. (I’m not sure she had gone on the record with me yet.) Members being confronted about whether or not they spoke to a reporter about the organization—and punished if they didn’t seem to disclose it—is reflective of what’s going on internally.
On Twitter, I suggested that ACT UP NY might be violating its bylaws in its process of suspending these two members. According to the IRS, the organization became federally tax-exempt in 2023, meaning that its bylaws are legally binding.
Here’s what the ACT UP NY bylaws say about suspending members:
“B. Expulsion and Suspension
1. Members may be expelled immediately only in the case of direct physical violence.
2. All other concerns about interpersonal behavior shall be reported to the Harassment Grievance Team for investigation and remedy, as described in the relevant section below.
3. Theft or misuse of funds results in immediate loss of access to funds, accounts, social media logins, cash boxes, passwords, etc., and removal from any elected positions held. Other remedies are considered on a case-by-case basis.”
Part 2 refers to a section further down in the bylaws which outlines a process by which “other concerns” are handled by a harassment and grievance team, which hasn’t happened in either recent case.
In emails (below), Li had a different interpretation of the bylaws, one that essentially allows floor votes to trump other bylaws at any time. I could see lawyers arguing both sides here. If you’re interested, it’s worth reading through the bylaws to get a fuller understanding of membership, grievances, and the significance of bylaws.
Li has expressed concerns in our email exchanges over the last two weeks that I would misconstrue him in my reporting, so I promised him that I would share his communications around Jones’ suspension in their “entirety.” See below; you can decide for yourselves.
Another member appears in the correspondence and is important to the story of Jones’ suspension. They provided notes from the meeting at which the suspension was decided. I redacted (whited out) that person’s name based on the same principle I used in the main article: they haven’t identified themselves publicly as an ACT UP member, as Li has done in other press. The email addresses of other members who were on this chain are also redacted.
In retrospect, the emails below seem to show a misunderstanding around whether Jones was suspended just for talking to me or for not disclosing it sooner—and a misunderstanding around which one I was claiming. To be fair, my tweets were mostly about her talking to me. I can’t say I’m entirely clear still, but the meeting notes below seem to indicate that both “offenses” were deciding factors. I’m not sure Li agrees.
I’m excited for this story to be over, but it seems to never end. At the least, I won’t be able to communicate with Li anymore since he is threatening to take me to court. But I am still getting daily dispatches from members about an organization seeming to be dealing with a lot of internal strife and hemorrhaging members, not just from suspensions. I’ll post important updates on Twitter (@jewstein3000), if you have an interest.
This story was initially newsworthy to me because ACT UP is an historic organization founded around a deadly viral pandemic and it was confronting a moment of reckoning around another deadly viral pandemic, Covid-19. It’s become, perhaps, more a story reflecting leftist organizing, power, and disability/marginalization. What’s happening is not entirely unlike what I’ve seen in a lot of leftist organizations, especially since 2020. And ACT UP also has a long history of dealing with accusations of non-inclusivity.
Emails concerning Bridgette Jones’ suspension
![Hi Justine, and all those CC'd: Let me attempt to provide some clarification. Bridgette Jones (Bridgette) was suspended by a vote of the Floor, i.e. the general membership of ACT UP, during this past general meeting, which was Sept. 16. The rationale for the Floor's decision was covered by the Floor's discussion, and I have CC'd [REDACTED], who was the designated notetaker for that meeting. Hopefully, they can help provide a more full account of the Floor's reasoning; but I believe that the Floor's rationale for suspension was more multifaceted than simply speaking to a journalist. [REDACTED] also helped Bridgette in getting $200 from ACT UP, back in July, so Bridgette could testify at the Nassau County legislature against the mask ban; and I think I am safe in saying that ACT UP's decision to provide support for Bridgette, in the form of private, wheelchair-accessible transportation from New York City to Nassau County, was made on principle, and not in order to "make the organization look good", as it was characterized in Justine's article. It may be true, as Justine writes, that "the people who suspended [Bridgette] didn't attend [the Nassau County mask ban hearing]"; they did pay for her to attend it, though. As for the bylaws, the bylaws state that "there is only one body of authority within ACT UP, and that is the general Floor at the weekly Monday night meetings"; they state that the Floor is "the sole legitimating and financial authority"; and they state that "the Floor can, by majority vote, decide whatever it wishes within the confines of state and federal laws." The bylaws also state that the Floor is constituted by a quorum of at least seven voting members, in terms which an attorney working with ACT UP helped to prepare, to conform with N.Y. Not-For-Profit L. § 608. It is well within the Floor’s rights, which is to say well within the members’ rights, to decide for themselves whom they shall (or shall not) volunteer, organize, work, recreate, and associate with; and to determine for themselves the conditions under which they find such association tolerable, or intolerable. Under the law, that is called the freedom of association. And it is my understanding that the Floor thus far has only voted to conditionally suspend Bridgette, and that she has already been invited to participate in a reparative process, with the goal of restoring her participation in the group.](https://substackcdn.com/image/fetch/$s_!Hftg!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fb6cfd377-6aff-460e-9cf9-c40aa0af0083_1154x504.png "Hi Justine, and all those CC'd: Let me attempt to provide some clarification. Bridgette Jones (Bridgette) was suspended by a vote of the Floor, i.e. the general membership of ACT UP, during this past general meeting, which was Sept. 16. The rationale for the Floor's decision was covered by the Floor's discussion, and I have CC'd [REDACTED], who was the designated notetaker for that meeting. Hopefully, they can help provide a more full account of the Floor's reasoning; but I believe that the Floor's rationale for suspension was more multifaceted than simply speaking to a journalist. [REDACTED] also helped Bridgette in getting $200 from ACT UP, back in July, so Bridgette could testify at the Nassau County legislature against the mask ban; and I think I am safe in saying that ACT UP's decision to provide support for Bridgette, in the form of private, wheelchair-accessible transportation from New York City to Nassau County, was made on principle, and not in order to \"make the organization look good\", as it was characterized in Justine's article. It may be true, as Justine writes, that \"the people who suspended [Bridgette] didn't attend [the Nassau County mask ban hearing]\"; they did pay for her to attend it, though. As for the bylaws, the bylaws state that \"there is only one body of authority within ACT UP, and that is the general Floor at the weekly Monday night meetings\"; they state that the Floor is \"the sole legitimating and financial authority\"; and they state that \"the Floor can, by majority vote, decide whatever it wishes within the confines of state and federal laws.\" The bylaws also state that the Floor is constituted by a quorum of at least seven voting members, in terms which an attorney working with ACT UP helped to prepare, to conform with N.Y. Not-For-Profit L. § 608. It is well within the Floor’s rights, which is to say well within the members’ rights, to decide for themselves whom they shall (or shall not) volunteer, organize, work, recreate, and associate with; and to determine for themselves the conditions under which they find such association tolerable, or intolerable. Under the law, that is called the freedom of association. And it is my understanding that the Floor thus far has only voted to conditionally suspend Bridgette, and that she has already been invited to participate in a reparative process, with the goal of restoring her participation in the group.")
![Thank you Victor. My follow up questions are below in red. On Sep 17, 2024, at 8:57 AM, Victor Li wrote: Hi Justine, and all those CC'd: Let me attempt to provide some clarification. Bridgette Jones (Bridgette) was suspended by a vote of the Floor, i.e. the general membership of ACT UP, during this past general meeting, which was Sept. 16. The rationale for the Floor's decision was covered by the Floor's discussion, and I have CC'd [REDACTED], who was the designated notetaker for that meeting. Hopefully, they can help provide a more full account of the Floor's reasoning; but I believe that the Floor's rationale for suspension was more multifaceted than simply speaking to a journalist. Yes I would appreciate clarification if [REDACTED] wants to provide, as multiple sources told me she was suspended for in relation to her sharing her thoughts with me on the record. I will happily correct the record once I obtain clarification. Clarification on Emily’s suspension would also help. I have no problem correcting errors, if sources were wrong or partial.](https://substackcdn.com/image/fetch/$s_!qJ_i!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F8d72ee3e-eac6-4ba3-ae74-d99abba4b9fe_1150x497.png "Thank you Victor. My follow up questions are below in red. On Sep 17, 2024, at 8:57 AM, Victor Li wrote: Hi Justine, and all those CC'd: Let me attempt to provide some clarification. Bridgette Jones (Bridgette) was suspended by a vote of the Floor, i.e. the general membership of ACT UP, during this past general meeting, which was Sept. 16. The rationale for the Floor's decision was covered by the Floor's discussion, and I have CC'd [REDACTED], who was the designated notetaker for that meeting. Hopefully, they can help provide a more full account of the Floor's reasoning; but I believe that the Floor's rationale for suspension was more multifaceted than simply speaking to a journalist. Yes I would appreciate clarification if [REDACTED] wants to provide, as multiple sources told me she was suspended for in relation to her sharing her thoughts with me on the record. I will happily correct the record once I obtain clarification. Clarification on Emily’s suspension would also help. I have no problem correcting errors, if sources were wrong or partial.")
![[REDACTED] also helped Bridgette in getting $200 from ACT UP, back in July, so Bridgette could testify at the Nassau County legislature against the mask ban; and I think I am safe in saying that ACT UP's decision to provide support for Bridgette, in the form of private, wheelchair-accessible transportation from New York City to Nassau County, was made on principle, and not in order to "make the organization look good", as it was characterized in Justine's article. It may be true, as Justine writes, that "the people who suspended [Bridgette] didn't attend [the Nassau County mask ban hearing]"; they did pay for her to attend it, though. I believe you are misconstruing my tweet btw. I did not provide a rationale for why she attended. I simply stated the outcome. For reference, you can see your social media posts in the aftermath of the hearing in Nassau. As for the bylaws, the bylaws state that "there is only one body of authority within ACT UP, and that is the general Floor at the weekly Monday night meetings"; they state that the Floor is "the sole legitimating and financial authority"; and they state that "the Floor can, by majority vote, decide whatever it wishes within the confines of state and federal laws." The bylaws also state that the Floor is constituted by a quorum of at least seven voting members, in terms which an attorney working with ACT UP helped to prepare, to conform with N.Y. Not-For-Profit L. § 608. It is well within the Floor’s rights, which is to say well within the members’ rights, to decide for themselves whom they shall (or shall not) volunteer, organize, work, recreate, and associate with; and to determine for themselves the conditions under which they find such association tolerable, or intolerable. Under the law, that is called the freedom of association. And it is my understanding that the Floor thus far has only voted to conditionally suspend Bridgette, and that she has already been invited to participate in a reparative process, with the goal of restoring her participation in the group. For reference, I was referring to subsection B “expulsion and suspension” and the harassment policy it references later in the bylaws. You don’t interpret “all other behavior” (aside from violence) as relevant to Bridgette’s situation?](https://substackcdn.com/image/fetch/$s_!9dVQ!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2Fb5bb2d69-c528-4f7d-9a09-359e8c445c82_1149x514.png "[REDACTED] also helped Bridgette in getting $200 from ACT UP, back in July, so Bridgette could testify at the Nassau County legislature against the mask ban; and I think I am safe in saying that ACT UP's decision to provide support for Bridgette, in the form of private, wheelchair-accessible transportation from New York City to Nassau County, was made on principle, and not in order to \"make the organization look good\", as it was characterized in Justine's article. It may be true, as Justine writes, that \"the people who suspended [Bridgette] didn't attend [the Nassau County mask ban hearing]\"; they did pay for her to attend it, though. I believe you are misconstruing my tweet btw. I did not provide a rationale for why she attended. I simply stated the outcome. For reference, you can see your social media posts in the aftermath of the hearing in Nassau. As for the bylaws, the bylaws state that \"there is only one body of authority within ACT UP, and that is the general Floor at the weekly Monday night meetings\"; they state that the Floor is \"the sole legitimating and financial authority\"; and they state that \"the Floor can, by majority vote, decide whatever it wishes within the confines of state and federal laws.\" The bylaws also state that the Floor is constituted by a quorum of at least seven voting members, in terms which an attorney working with ACT UP helped to prepare, to conform with N.Y. Not-For-Profit L. § 608. It is well within the Floor’s rights, which is to say well within the members’ rights, to decide for themselves whom they shall (or shall not) volunteer, organize, work, recreate, and associate with; and to determine for themselves the conditions under which they find such association tolerable, or intolerable. Under the law, that is called the freedom of association. And it is my understanding that the Floor thus far has only voted to conditionally suspend Bridgette, and that she has already been invited to participate in a reparative process, with the goal of restoring her participation in the group. For reference, I was referring to subsection B “expulsion and suspension” and the harassment policy it references later in the bylaws. You don’t interpret “all other behavior” (aside from violence) as relevant to Bridgette’s situation?")
![Would you care to clarify why Bridgette was suspended then? You referred me to [REDACTED], who provided her notes from the meeting, which confirm what I heard from sources. Are you saying her notes are wrong? Again, I’m not sure what you want me to say publicly to correct the record, but if I were what you’re saying here, I would also share [REDACTED’s] notes. And people can decide for themselves I guess?](https://substackcdn.com/image/fetch/$s_!5Aid!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F359694a5-dd4a-43e3-8e36-0f0546b53c11_1142x243.png "Would you care to clarify why Bridgette was suspended then? You referred me to [REDACTED], who provided her notes from the meeting, which confirm what I heard from sources. Are you saying her notes are wrong? Again, I’m not sure what you want me to say publicly to correct the record, but if I were what you’re saying here, I would also share [REDACTED’s] notes. And people can decide for themselves I guess?")
![If I thought [REDACTED’s] notes were wrong, I would’ve said their notes were wrong. I said they can provide a more full account of the Floor’s reasoning, and they do. And I said already that I am not interested in editing or litigating your writing; if you want to stand by sources that blatantly fabricate whole disciplinary sagas that never happened, that is between you and your publishers.](https://substackcdn.com/image/fetch/$s_!Ckv6!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F48ca53a4-c872-45d8-9b26-1e244d6546c5_1145x197.png "If I thought [REDACTED’s] notes were wrong, I would’ve said their notes were wrong. I said they can provide a more full account of the Floor’s reasoning, and they do. And I said already that I am not interested in editing or litigating your writing; if you want to stand by sources that blatantly fabricate whole disciplinary sagas that never happened, that is between you and your publishers.")
I wish I could like this a second time. I’m really glad you’re reporting this story because I think it is emblematic of the ways our system is dehumanizing marginalized people.