PDF Summary:Let the Record Show, by Sarah Schulman

Let the Record Show by Sarah Schulman sheds light on the formative years of ACT UP New York, the influential AIDS activist group that transformed the trajectory of the AIDS crisis through strategic, direct action tactics. The book explores how ACT UP's patient-centered and intersectional approach, coupled with innovative activism and messaging strategies, challenged institutions and dominant narratives, ultimately expediting critical treatment breakthroughs.

Schulman unravels the rich history of ACT UP's successes while thoughtfully examining the internal dynamics and tensions that ultimately led to the group's demise. She highlights how individual activists' lived experiences shaped the movement's powerful impact while underscoring the challenges marginalized members faced within a complex organization. This book offers a nuanced look at a pivotal period in AIDS activism, celebrating achievements while acknowledging struggles and shortcomings.

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Practical Tips

• Volunteer for a local government advisory board or committee that focuses on streamlining services or improving citizen-government interactions. Your firsthand experience with bureaucracy, as documented in your journal, can provide valuable insights that contribute to making real changes in how local government operates.
• Create a "Sense of Urgency" calendar where you mark important social or environmental dates and plan actions around them. By aligning your activities with these dates, you can tap into the collective urgency felt by others who are also focusing on these issues at the same time. For example, if climate change is your cause, you might plan to reduce your carbon footprint significantly by the next Earth Day and use the time leading up to it to educate others and encourage them to join your efforts.
• Build a network of allies by volunteering for causes that align with your interests. Through volunteering, you'll meet like-minded individuals who can form the backbone of community support for future activism projects. This network can provide resources, advice, and manpower when you decide to take on activist roles or campaigns.
• Partner with local artists to create a traveling art exhibit featuring works by or about PWAs. Reach out to community centers, schools, and galleries to host the exhibit. Art can be a powerful medium to convey messages and emotions, and by showcasing these works, you can help bring the perspectives of PWAs to a wider audience in a compelling and engaging way.

Creation of AIDS Treatment Registry Demonstrating ACT UP's Commitment to Politics That Prioritize Patients

Schulman describes members of the group—such as Iris Long, David Kirschenbaum, Margaret McCarthy, and others—as creating the ATR (AIDS Treatment Registry), which demonstrated the organization’s commitment to politics that focus on patients and sharing information. It represented their commitment to empowering PWAs to make educated choices about their own healthcare. The ATR, initially a modest pamphlet distributed by hand and later a more comprehensive publication mailed to patients, activists, and doctors nationwide, became a vital source of information at a time when access to clinical trials was shrouded in secrecy and misinformation.

Practical Tips

• Use a decision-making app to weigh healthcare options. Input data like treatment pros and cons, personal values, and potential outcomes to help clarify your choices. For example, if faced with multiple medication options, the app could help you visualize which aligns best with your lifestyle and health goals.
• Start small by creating an informative flyer on a local issue you're passionate about and distribute it in your neighborhood. Begin with a topic that affects your community, like recycling guidelines or a local charity event, and use simple design tools like Canva to create an eye-catching flyer. Share these flyers in local cafes, libraries, or community centers to raise awareness and engage your neighbors.
• Volunteer to contribute to a patient-oriented trial review platform. Look for opportunities to join patient advocacy groups or online communities where you can share your experiences and insights. Your contributions could help demystify clinical trials for others by providing real-world perspectives on the process, eligibility, and outcomes.

The Parallel Track System Developed by ACT UP: Creating Solutions for the Powerless

Schulman highlights the invention of the system, which revolutionized availability of experimental AIDS medications. Recognizing the limitations of traditional clinical trials, which excluded patients with pre-existing conditions (like a history of opportunistic infections or a need for multiple drug combinations), Jim Eigo, working with the T&D Committee, proposed that individuals too sick to qualify for official studies should still have the opportunity to access promising new drugs. By crafting a parallel track alongside more rigorously controlled studies, ACT UP ensured that those most in need of treatment were not condemned to a hopeless wait for approved medications. After months of petitioning Anthony Fauci and engaging in an intricate campaign of negotiations and public pressure, ACT UP successfully pushed the authorities to implement the alternative trial system.

Context

• Jim Eigo was a prominent member of ACT UP and part of the Treatment and Data (T&D) Committee, which focused on scientific and medical issues related to AIDS treatment. His work was crucial in developing strategies to improve access to medications.
• Patients with pre-existing conditions are often excluded to maintain a homogeneous study group, which helps in isolating the effects of the drug being tested. This can lead to a lack of data on how these drugs perform in more diverse, real-world populations.
• As a leading figure in the U.S. government's response to the AIDS crisis, Dr. Anthony Fauci was a key target for ACT UP's advocacy. His eventual support was crucial in implementing the parallel track system.
• The implementation of the parallel track system was a significant achievement, allowing patients who were not eligible for traditional trials to access experimental drugs, thus providing hope and potential treatment options for those in dire need.

ACT UP's Advocacy for Treatment Access

Schulman argues that ACT UP's direct actions, rooted in a strategic understanding of power and visibility, played a crucial role in transforming the landscape of AIDS treatment and research. These actions, often informed by intricate knowledge gleaned from scientists like Iris Long and bolstered by the movement's creative visionaries like Gregg Bordowitz, demanded accountability, challenged entrenched power structures, and pressured drug companies and the government to acknowledge the urgent needs of PWAs. By choosing nontraditional targets—exemplified by the FDA protest—ACT UP upended the narrative of institutional indifference, forcing the media spotlight onto a previously ignored crisis. Further, their unrelenting pressure on pharmaceutical giants through demonstrations, boycotts, and media campaigns exposed egregious profiteering, culminating in a historic price reduction for AZT, which was the priciest medication on the market at the time.

Practical Tips

• Start a micro-podcast series focusing on a cause you're passionate about to leverage the power of storytelling and personal connection. Platforms like Anchor allow you to record and distribute podcasts easily. Share episodes that feature personal stories, interviews with experts, or discussions on recent developments related to your cause, and encourage listeners to engage in direct actions.
• Engage with your local representatives by writing letters or emails that express your concerns about drug company practices and government oversight. Personal stories can be compelling, so include your own experiences or those of people close to you. This direct approach can put pressure on policymakers to take action and can also raise awareness among other constituents who read these communications when they are made public.
• Develop a workshop for your local community center that teaches critical thinking and media literacy skills. By empowering others to critically analyze information and recognize biases in media and political rhetoric, you contribute to a more informed public that can better challenge misleading narratives and power structures. You might, for example, use current events to show how certain stories are framed and discuss the implications of these narratives on public perception and policy.
• Start a petition on a platform like Change.org to address the specific needs of a group or community you want to support. Clearly outline the objectives and the actions you want the target of your petition to take, making it easy for others to understand and support your cause.
• Start a conversation with friends or family about a societal problem using an unexpected angle to spark interest. Discussing the importance of mental health in the workplace? Shift the focus to how interior design in office spaces can affect employee well-being, and brainstorm with your peers on how this could be a new avenue for advocacy.
• Create a digital storytelling project to share experiences that highlight the impact of institutional indifference. Use social media platforms to post short videos or written narratives from individuals affected by the issue. This personalizes the problem, making it more relatable and harder to ignore, and can inspire others to take action.
• You can scrutinize medication prices by comparing costs across different pharmacies using online tools or apps. By doing this, you become more informed about the pricing landscape and can choose to support pharmacies that offer fair pricing. For example, use a price comparison tool before refilling a prescription to see if there's a significant price difference for the same medication at various local or online pharmacies.
• Organize a virtual town hall meeting with healthcare professionals, patients, and other stakeholders to discuss the challenges of affording necessary medications. Use video conferencing tools to bring people together for this discussion. The collective insights and experiences shared can be used to create a community-driven action plan or petition aimed at reducing drug prices.

Role of Leaders in ACT UP Inspiring Constituents

Schulman recognizes that despite the organization's inherent resistance to hierarchies and its emphasis on collective action, several individuals had an outsized impact by acting as influential leaders. These people –Larry Kramer, Maxine Wolfe, and Mark Harrington – not only created foundational visions that helped to determine ACT UP's direction and success, but also fostered intimate and powerful relationships that inspired others, attracting members to specific activities and cohering ideas, demands, and values.

Larry Kramer's Influence on ACT UP's Founding and Public Perception

Schulman acknowledges the seminal role of Larry Kramer, a renowned writer and vocal activist for those affected by AIDS, in inciting the formation of ACT UP. Through his searing public pronouncements and his confrontational approach, Kramer challenged the complacency and indifference surrounding the AIDS crisis, spotlighting the government's inaction and galvanizing a collective of individuals to take direct action. His influential voice, shaped by his deep personal losses coupled with his privileged access to media platforms and high-level connections, spurred both fear and action, ultimately contributing, as Schulman describes, to creating the powerful community of AIDS activists that became ACT UP.

Practical Tips

• Start a micro-fundraising challenge on social media to support AIDS research and patient care. Set a modest goal that your friends and family can help you achieve, such as raising enough money to sponsor a day of research at a lab or to buy a month's supply of essential medications for a patient. Share your progress online to encourage others to contribute or start their own fundraising challenges.
• Create a simple email newsletter to share with friends and family, highlighting instances of inaction you observe and suggesting small, concrete steps they can take to address the issues, such as contacting representatives or supporting relevant initiatives.
• Implement a personal "action hour" into your weekly routine. Dedicate one hour each week to taking direct action on a cause you care about. This could involve writing emails to your local government officials, educating yourself on a topic through documentaries or articles, or even starting a small fundraiser. By setting aside this time, you're committing to regular, tangible steps towards making an impact.
• Create a personal story bank for public speaking engagements. Gather stories from your life, especially those involving overcoming adversity, and practice weaving them into your talks or presentations. This can make your content more relatable and impactful, as audiences often connect with speakers who share personal, transformative experiences.
• Volunteer for roles that provide access to influential gatherings, such as conferences or workshops, even if it's in a minor capacity. This could be as simple as offering to help with registration or logistics. These roles often provide a chance to meet organizers, speakers, and attendees, thereby growing your network and potentially leading to privileged access similar to what Kramer experienced.
• You can harness the power of storytelling to create a sense of urgency in your team by crafting narratives that highlight potential risks and the consequences of inaction. For example, during a team meeting, share a story about a company that failed to adapt to market changes and the negative impact it had on their business. This can motivate your team to take proactive steps to avoid a similar fate.

Maxine Wolfe's Leadership Role in ACT UP: Grassroots and Feminist Activism

Schulman describes Maxine Wolfe, a veteran of social justice movements, as among ACT UP's leading figures in shaping the organization's philosophy, strategies, and commitment to representing the most marginalized communities impacted by AIDS. Having previously worked with CORE, feminist anti-sterilization efforts, and Left lesbian organizing groups, Maxine brought a profound understanding of proactive initiatives, coalition-building, and the nuances of power structures. She fiercely advocated for a democratic, bottom-up approach, organizing unorganized communities, especially women impacted by AIDS. Her legacy persists in ACT UP's embrace of patient-centered politics and its unrelenting pursuit of social justice alongside demands for effective treatments.

Practical Tips

• Advocate for inclusive health education in your local school district by joining or forming a parent-teacher committee. Work towards integrating comprehensive health curricula that address the needs of marginalized communities, ensuring that future generations are better informed and more compassionate. You could propose guest lectures, updated resources, and inclusive health fairs as part of this initiative.
• You can enhance your understanding of power structures by mapping out the relationships and influences in your local community. Start by identifying key players such as local government officials, business leaders, and heads of community organizations. Then, research their connections, agendas, and the power dynamics between them. This will give you a clearer picture of how decisions are made and who holds influence, which is crucial for effective activism or community engagement.

Mark Harrington's Influence in Transforming Activism for Care

Mark Harrington, Schulman explains, grew into a significant ACT UP figure through his self-directed transformation from a politically inexperienced, HIV-positive artist into a leading advocate for cutting-edge medical treatment. Starting with basic actions like providing glossaries of scientific terms for the membership at large to understand the intricacies of drug trials, Mark quickly immersed himself in ACT UP's efforts with treatment and data, developing strategic plans, attending conferences, and relentlessly pushing scientists and government officials to advance research and expedite drug approval processes. His dedication and expertise not only saved lives through influencing medical studies but also shifted the activist group's focus from a more reactive mode to a strategically proactive one.

Practical Tips

• Use flashcards to quiz yourself on new terminology from areas you're exploring, whether it's a hobby, a new job field, or a subject of personal interest. Write the term on one side and a simplified explanation or example on the other. Regularly testing yourself with these flashcards can reinforce your learning and help you internalize the information.
• Start a micro-blog or social media page dedicated to summarizing and sharing key takeaways from conferences you attend. By distilling the information and presenting it in an accessible format, you can engage a broader audience and amplify the impact of the ideas presented at the conference.
• Start a blog or social media page focused on sharing stories of medical advancements and their impact on saving lives. Use this platform to highlight unsung heroes in the medical field, innovative research, or personal recovery stories. This not only spreads awareness but also encourages others to support and contribute to medical studies and healthcare initiatives.

Other Perspectives

• Expediting drug approval processes might disproportionately benefit certain groups with the resources and knowledge to navigate these expedited pathways, potentially exacerbating inequalities in access to treatment.
• Being proactive is not inherently superior to being reactive; there may have been advantages to the group's original reactive approach that were lost in the transition to a more strategic focus.

ACT UP's Impact on AIDS Research, Treatment, and Policy

Schulman documents that ACT UP achieved tangible victories that transformed the landscape of AIDS research, expedited the approval of crucial medications, and forced a dramatic shift in the way treatments were conceptualized and made available.

Citizen Scientists of Treatment & Data Committee Setting Research Agenda

Schulman highlights the emergence of citizen scientists within ACT UP, activists who empowered themselves with scientific knowledge to directly influence the research agenda. This group, focused on the second iteration of the Treatment and Data Committee (T&D), comprised of individuals like Harrington, Staley, Franke-Ruta, and Gonsalves, who went beyond demanding access to existing medications by meticulously analyzing research priorities, engaging in direct dialogue with scientists, and advocating for a more targeted and strategic approach to developing new drugs.

Public Demonstrations Throughout ACT UP's Fight for Effective Medications

Schulman asserts that the direct actions of ACT UP, fueled by a collective sense of urgency, propelled the HIV/AIDS epidemic into the national spotlight, forcing a reevaluation of research priorities and expediting the approval of crucial medications. These demonstrations, often featuring creative and theatrically arresting visuals conceived by artist collectives such as Gran Fury, targeted government agencies like the FDA and National Institutes of Health, pharmaceutical giants like Burroughs Wellcome, and even the New York Stock Exchange, generating widespread media attention and public pressure. These demonstrations, Schulman points out, not only pressured those in power to respond with tangible changes in policy and funding but also provided a potent platform for PWAs to express their anger, recount their stories, and assert their demands for a more humane and effective approach to the crisis.

Practical Tips

• Create simple infographics using free online tools to explain key facts about an issue you care about and share them on your social media accounts. Visuals can be powerful in making complex information more accessible and shareable. If you're concerned about food waste, an infographic could illustrate how much food is wasted annually and offer tips for reducing waste at home, encouraging others to change their habits.
• Use a countdown app to keep track of time-sensitive objectives, setting alerts at intervals leading up to your deadlines. This constant reminder can instill a sense of urgency as you're frequently notified of the time slipping away, pushing you to act with the same immediacy as a group united by a pressing cause.
• Start a social media campaign to highlight the role of financial markets in public health issues. Use hashtags, infographics, and short videos to show how investment decisions can impact drug pricing and access to treatments, encouraging followers to demand ethical investment policies from financial institutions.
• You can encourage reevaluation of research priorities by submitting public comments during open FDA dockets. The FDA often opens public commenting periods for new guidelines or regulations. By submitting well-researched and articulate comments on why certain medications or treatments should be prioritized, you can influence the decision-making process and potentially affect research priorities.
• You can track policy changes and funding allocations in your local government to identify the impact of recent demonstrations. Start by subscribing to newsletters or alerts from your city council or local government websites. When you notice a policy change or funding decision that aligns with the goals of a recent demonstration, document it. This can help you understand the direct correlation between civic engagement and governmental action.

Using Studies and Cures to Combat AIDS Crisis

Schulman describes the efforts of ACT UP's T&D as a complex navigation of desperation, hope, distrust, learning, and ingenuity in the face of a constantly mutating and devastating epidemic. While the initial focus of T&D when AZT emerged as the first sanctioned AIDS therapy was to expedite its availability, simultaneously, activists with expert knowledge of the drug approval system were working behind the scenes, researching other possibilities, trying to make sense of what was "in the pipeline," compiling data on ongoing clinical trials, and identifying failed drugs that had been shelved because they weren't profitable but that might nonetheless prove effective in treating AIDS. This work involved a lot of educating ACT UP internally, to convey the most basic information to the entire membership about trials and the FDA and NIH, the two agencies constantly at the center of T&D's actions and activism. The goal, as Schulman articulated, was to turn the despair, the immediacy, and the fear of death from inadequacy and invisibility into hope for novel drugs. This complex process was not linear and instead involved false starts, misinformation, and both internal and external friction.

Context

• The movement faced numerous challenges, including misinformation about AIDS, societal stigma, and resistance from pharmaceutical companies and government agencies. Activists had to navigate these obstacles while maintaining momentum and solidarity.
• Despite its approval, AZT was controversial due to its high cost, severe side effects, and limited efficacy. Activists sought to address these issues by advocating for lower prices and better access.
• Many drugs are shelved not because they are ineffective, but because they are not seen as profitable. Activists sought to challenge this by advocating for the use of such drugs in life-threatening situations like the AIDS crisis.
• Clinical trials are research studies performed on people to evaluate medical, surgical, or behavioral interventions. They are the primary way researchers find out if a new treatment is safe and effective in humans.
• The strategies and successes of ACT UP have had a lasting impact on health activism, influencing how patient advocacy groups operate and interact with the medical and regulatory establishments today.
• In the context of drug development and activism, false starts can refer to initial efforts or trials that seemed promising but ultimately did not lead to successful outcomes. This could involve drugs that initially showed potential in early testing phases but failed in later stages due to ineffectiveness or safety concerns.

Research and Treatment Shifts due to ACT UP's Actions

Schulman meticulously documents the impactful paradigm shift in AIDS research and treatment directly attributable to the tireless activism of ACT UP. Initially, much attention, within the community and from governmental and pharmaceutical entities, was placed on developing a single "cure" for AIDS, a fantasy of a single pill that would magically return the infected to health. However, the virus's constant mutation, coupled with its complex interaction with immunity, necessitated a multilayered approach. As AIDS progressed, as activists like Mark Harrington and Garance Franke-Ruta, working with the T&D committee, started to fully understand AIDS not just as transmission, but as process, they were able to successfully convince the NIH and FDA to move beyond the search for one drug and instead to focus on an individualized response addressing the condition on multiple levels. This shift, Schulman argues, is ACT UP's greatest contribution to humanity, leading to the development of effective combination therapies like the current "cocktail" of daily antiviral medications that suppress viral load so strongly in the bloodstream that a person with HIV is rendered biologically incapable of infecting others. It was also this more sophisticated understanding of the illness that allowed for medicines that could prevent and treat opportunistic infections (OIs) that caused so many agonizing and preventable deaths.

Context

• HIV is a retrovirus that has a high mutation rate due to its error-prone reverse transcriptase enzyme. This means the virus can quickly develop resistance to drugs, making it challenging to treat with a single medication.
• The shift in understanding influenced public health policies to support comprehensive care strategies, including prevention, treatment, and support services for people living with HIV/AIDS.
• The ability to prevent and treat OIs has transformed HIV from a fatal disease to a manageable chronic condition, drastically reducing AIDS-related deaths and improving life expectancy for those living with HIV.

Other Perspectives

• Some might argue that the pharmaceutical industry's pursuit of profit and competition among companies also spurred innovation and research into more effective treatments, independent of activist pressure.
• The focus on a single cure for AIDS was a logical starting point given the success of single-drug treatments for other diseases.
• While focusing on individualized responses can be beneficial, it may lead to a more complex and costly treatment landscape, potentially limiting access for patients with fewer resources.
• Regulatory agencies like the FDA had begun to recognize the need for accelerated approval processes for life-threatening conditions before ACT UP's influence, which also facilitated the development of new treatments.
• The effectiveness of the cocktail in suppressing viral load can vary from person to person due to factors like adherence to the medication regimen, the presence of other health conditions, and potential drug resistance.

Activists Advocate Lowering AZT Doses

The initial and unprecedented approval of AZT as the first drug for AIDS treatment stimulated massive hope within the PWA community and was greeted with pronouncements from pharmaceutical companies that lives would be saved, but Dr. Joseph Sonnabend observed a strange anomaly within the first clinical trial, conducted by the patent-holder Burroughs Wellcome. The study was closed early when Burroughs Wellcome compared the treatment and placebo groups, and discovered that AZT had dramatically decreased the death rate in those receiving the drug, a finding that stimulated widespread fanfare and high profits for the company. But David Kirschenbaum and his colleagues, through meticulous research and direct contact with scientists and doctors, discovered that AZT, while it slowed the disease for some people, ultimately failed in a huge number of patients, and that its toxic side effects could not only make them sicker but also cause resistance to subsequent treatments. This raised the alarm within ACT UP regarding dosages. Were patients receiving overly high doses, causing greater toxicity and faster resistance, creating more problems than solutions? This led to a successful campaign by ACT UP to pressure the National Institute of Health and the FDA into decreasing the recommended daily dose, winning another life-saving alteration in treatment protocols.

Practical Tips

• Educate yourself on the history of HIV/AIDS treatments to better understand current advancements. By learning about the development of drugs like AZT, you can appreciate the progress made and the importance of ongoing research. Start by visiting reputable health websites, reading articles, and watching documentaries focused on the evolution of HIV/AIDS medication.
• You can develop a habit of critical observation by keeping a journal to note any inconsistencies or anomalies in everyday situations. For instance, if you notice a discrepancy in the service at a local restaurant compared to previous visits, jot it down and consider possible reasons. This practice sharpens your ability to spot irregularities, much like a clinician would in a trial.
• Develop a habit of seeking second opinions before starting treatments known for severe side effects. Reach out to multiple healthcare professionals or seek services that connect patients with specialists for second opinions. This can provide a broader perspective on your treatment options and help you weigh the potential benefits against the risks of side effects and resistance.
• Start a medication journal to track any side effects or symptoms you experience when taking new medications. This can help you identify if a dosage might be too high or if you're experiencing adverse reactions. Note the time, dosage, and any physical or emotional changes, and share this with your healthcare provider to adjust treatment plans if necessary.

Research Concerns: Long-Term Nonprogressors and Exposed Uninfecteds For ACT UP

The emergence of a small number of individuals who had tested positive for HIV but whose disease never developed into AIDS, despite not using AZT, aroused intense curiosity within the ranks of the AIDS Coalition to Unleash Power. Mark Harrington, working with T&D, recognized that if scientists could identify why these "long term nonprogressors" did not develop AIDS, this information could lead to significant advances in treatment development, and so he led a successful campaign to convince the NIH to investigate this question, ultimately revealing important scientific information about how HIV interacted with the human immune system. Similarly, Harrington and his colleagues observed that a small subset of men who identified as gay were extremely sexually active in the seventies and eighties, when modes of HIV transmission were not known, and who had therefore engaged in ample unsafe sex, never acquired HIV. These individuals appeared to show resistance, and ACT UP called for the government to undertake systematic studies on this "exposed uninfecteds" group to determine why some people remained uninfected despite engaging in many risky activities. The research into both those who remained uninfected despite exposure and those who did not progress from HIV to AIDS would provide substantial medical and scientific breakthroughs in the years following the introduction of the drug cocktail that successfully suppressed viral load.

Context

• This is an international, grassroots political group working to end the AIDS pandemic. They are known for their direct action and advocacy, pushing for research, treatment, and policy changes related to HIV/AIDS.
• HIV attacks the immune system, specifically targeting CD4 cells. Understanding why long-term nonprogressors maintain stable CD4 counts can reveal insights into immune resilience.
• Understanding why some individuals did not progress to AIDS could lead to the development of new therapeutic approaches, potentially benefiting a broader population of people living with HIV.
• Long-term nonprogressors typically maintain a low viral load, which is the amount of HIV in the blood. This low set point is associated with slower disease progression and is a key area of study.
• HIV is primarily transmitted through unprotected sexual contact, sharing needles, and from mother to child during birth or breastfeeding. In the seventies and eighties, the modes of transmission were not well understood, leading to widespread risk behaviors.
• Understanding why some individuals remained uninfected despite exposure could reveal insights into natural immunity or resistance mechanisms, potentially guiding vaccine development or new preventive strategies.
• Identifying factors that contribute to natural resistance could help in developing targeted public health strategies to protect vulnerable populations and reduce transmission rates.
• Identifying genetic markers associated with resistance or non-progression can lead to personalized medicine approaches, tailoring treatments based on an individual's genetic makeup.

Media, Art, and Culture in ACT UP's Activism and Messaging

Schulman describes ACT UP as a complex and multifaceted community that embraced creativity and artistic expression as essential tools for communicating its demands, generating solidarity, and building a vibrant counterculture. Artists, designers, and media professionals within the organization not only documented ACT UP's activities and strategies but also employed their artistic expertise to shape the movement's message and public face, challenging dominant narratives and prompting greater community engagement.

Act Up: Art as a Tool For Community and Power

Schulman highlights how ACT UP's artistic and visual approaches functioned to communicate messages, to inspire change, to build group cohesion in the face of oppression and death, and to create a vibrant counterculture that was a safe harbor for members to connect. At a time when HIV and homosexuality were considered "unsavory" by the general populace, and most corporate media either obscured or demonized our concerns, it was up to ACT UP's artistic groups to fashion an image for us that could both reflect pride and reach out for empathy.

Art and Politics: Silence=Death's Evolution

Schulman carefully documents the origin and significance of ACT UP's most iconic image, SILENCE=DEATH, by a gay artist collective that included Avram Finkelstein, Don Yowell, Jorge Socarras, Charles Kreloff, Brian Howard, Chris Lion, and Oliver Johnson. Emerging long before ACT UP's formation, the collaborative process itself reveals how those marginalized by the crisis started to make sense of the collective emotional environment of fear, denial, stigma, and oppression, pushing towards action and vision. When AIDS was first called GRID, short for gay-related immune deficiency, the government of Ronald Reagan refused to acknowledge the catastrophe or respond with funding to develop treatments. Those infected were deserted by their loved ones, the state, businesses like hospitals and funeral homes, and shunned by much of society. There wasn't anywhere to discuss this except among other members of the LGBTQ+ community, and this collective of artists was a testament to that need. Creating SILENCE=DEATH began with a conscious decision to challenge and subvert the power of silence through bold imagery that would attract attention. The process of choosing an image, which would communicate to other gay men that an effort was under way, and also to other queer communities (specifically lesbians) who were more familiar with organized activism then most gay men, was debated for months. The intentionality, as Schulman asserts, was not simply to "express" feelings, but rather to inspire those who viewed the poster toward a sense of potential power.

Practical Tips

• Use your personal blog or social media to highlight stories of individuals affected by the issue you care about, connecting real-life narratives to the symbol you've created. If your symbol is about animal rights, for instance, you could share stories of rescued animals and how they've found new homes, tying these stories back to your symbol to create a stronger emotional connection and call to action for your audience.
• Educate yourself on current health crises by following reputable sources and health organizations online. By staying informed about issues like pandemics or rare diseases, you can become an advocate for timely government response and funding. For example, if a new health issue arises, use social media to share accurate information and petition for research funding.
• Use powerful imagery as your phone or computer wallpaper to subconsciously reinforce a sense of empowerment. Choose an image that makes you feel strong and capable whenever you look at it. This could be a picture of a mountain summit, a roaring lion, or even a fictional superhero – anything that instills a feeling of power and possibility.
• Create a visual diary to explore and express your connection to the LGBTQ+ community. Start by collecting images, symbols, and artwork that resonate with your understanding of queer culture. Dedicate a few minutes each day to add to your diary, reflecting on why each image speaks to you and how it represents the ongoing efforts and experiences of the community. This personal project can deepen your appreciation and awareness of the visual language that connects and communicates within queer spaces.

Rebellious Aesthetics and ACT UP's Cultural Impact

Schulman points out that ACT UP's iconic aesthetic—embodied by individuals like Mark Harrington, featuring shaved faces, cropped hair, white shirts, slim black jeans, and Doc Marten boots—arose organically from the community itself, but also reflected deliberate decisions and choices grounded in historical understanding and awareness of mass media. The first gay generation affected by AIDS, the "clones" of the seventies, were associated with a certain image: mustached, dressed in Western-style clothing. ACT UP aimed to separate itself stylistically from this decimated older generation, but also to project a look that contradicted the mainstream media's presentation of AIDS as a disease of sickly and defeated men, abandoned by their families, lovers, communities, and government. By contrast, ACT UP's look, in its neatness, fitness, and streamlined masculinity, presented a new kind of person with AIDS: vigilant, healthy-seeming, and defiant.

Practical Tips

• Start a personal project that challenges stereotypes. This could be a photo series, a collection of short stories, or an art installation that represents the diversity of experiences and self-expression within your social circle or community. The goal is to highlight the uniqueness of each person, moving beyond the collective labels that may have been ascribed to them by society or history.
• Start a blog or vlog series interviewing people who have overcome or are successfully managing a stigmatized condition. Focus on their achievements, strengths, and the positive aspects of their lives. This humanizes the condition and provides a counter-narrative to mainstream media's often one-dimensional portrayal.
• Organize a community fitness event or wellness workshop specifically for individuals with AIDS, emphasizing strength and vitality. Partner with healthcare providers and fitness experts to provide tailored sessions that reinforce the image of individuals with AIDS as health-conscious and proactive about their well-being.

Gran Fury's Role in AIDS Activist Efforts

Schulman describes how a core component of ACT UP's visual and artistic impact, Gran Fury was formed directly by the organization's initial actions. Emerging from ACT UP's initial public art project, Let the Record Show, an installation that covered the New Museum's street-front windows, Gran Fury functioned as a collective of ACT UP artists, designers, and publicists who created bold, graphic posters and art pieces for the movement as an affinity group. Gran Fury's work wasn't meant for galleries, but the artists—Tom Kalin, Marlene McCarty, Loring McAlpin, Donald Moffett, Patrick Moore, and Avram Finkelstein—were inspired by artists such as Jenny Holzer and Barbara Kruger, who utilized strong slogans and visuals to examine power and politics. Instead, the intention was to use the language of advertising to communicate with the general public through the city's streetscapes, and simultaneously create a visual identity for the organization that could be disseminated through the mainstream media to reach a broader, international audience. They used conventional advertising aesthetics, employing bold graphics and text that mimicked marketing campaigns to challenge homophobic narratives. This bold style served to create a recognizable and lasting impact on AIDS-related activism.

Practical Tips

• Transform a personal space with a themed window display to express your interests or beliefs. Choose a window in your home that's visible to the outside and create a display that represents a cause you're passionate about or a hobby you love. For example, if you're into environmental conservation, you could arrange a display of recycled art pieces or information about local wildlife.
• You can explore the impact of text in visual art by creating your own slogan-based artwork using simple tools like markers and poster board. Start by brainstorming phrases that resonate with your personal beliefs or current social issues. Then, design a poster that combines your text with a striking visual element, such as a bold color or a simple graphic. Display your work in a public space, like a community bulletin board, to engage with viewers and inspire conversation.
• Use sidewalk chalk to write thought-provoking messages or facts related to your cause in public spaces. This temporary medium ensures you're not damaging property, and it can engage passersby in high foot traffic areas, similar to how street art captures attention.
• Craft a signature tagline or catchphrase that encapsulates your personal mission or unique selling proposition, and incorporate it into your social media bios and personal website. Think about what sets you apart from others in your field and how you can summarize that in a memorable and concise statement.
• Create a series of short, impactful videos that use the storytelling techniques of commercials to convey your message. Share these videos on platforms like YouTube, Instagram, or TikTok, where they can be easily viewed, liked, and shared, thus reaching a wider audience through the algorithms that favor engaging content.
• Use storytelling in your everyday conversations to subtly shift perspectives, much like an advertisement would. When discussing topics related to social issues, frame your stories with characters or scenarios that defy harmful stereotypes. This could be as simple as casually mentioning a friend who breaks gender norms in their career choice during a coffee break chat, thereby using the power of narrative to challenge assumptions without the need for a formal setting or confrontation.
• Transform your email signature into a mini advocacy banner. Use a simple graphic design tool to create a small image that represents a cause you care about, with a catchy slogan or statistic. Add this image to your email signature to subtly promote awareness every time you send an email.

Strategies of Smaller Art Collectives Within ACT UP's Movement

While Gran Fury was the best-known artistic collective to emerge from ACT UP, Schulman underscores that a multitude of smaller groups with alternative visions and strategies also contributed to the movement's overall impact. By highlighting the work of groups such as Action Tours, GANG, and the API Caucus, Schulman reveals the dynamic ways in which individual artists within the broader ACT UP network created autonomous efforts that resonated within the movement as a whole. GANG, as Schulman describes, was organized by dissident artists frustrated by Gran Fury's close ranks and the lack of attention to gay issues unrelated to HIV within the broader ACT UP organization. Their work included actions like sticker campaigns, billboard designs, and short videos—all fueled by a more radical political vision than was represented by the broader group. Action Tours, on the other hand, embraced a more theatrically oriented, zap-focused approach, relying on costumes, props, and unconventional interventions in the tradition of earlier gay liberation movements, most famously by draping fabric over Lady Liberty to bring attention to the need for reproductive rights and the absence of federal funding for AIDS services. And ACT UP's Asian Pacific Islander Caucus, organized from a shared identity and agenda, focused its efforts on education and visibility for HIV + people in culturally targeted settings, such as gay Asian bars and public schools, employing a blend of community outreach, artistic interventions, and activist demonstrations.

Practical Tips

• Explore local art collectives to find one that aligns with your values and join it to contribute to community-driven change. By becoming an active member, you can use your unique skills to support causes you care about, much like Gran Fury did with ACT UP. For example, if you're passionate about environmental issues, seek out groups that use art to raise awareness and influence policy.
• Engage with local artists or collectives to collaborate on a community mural that depicts the change you want to see. Reach out to community centers, schools, or local businesses to find a space for the mural. Work together to design and paint the mural, ensuring it communicates your political vision clearly and invites passersby to reflect on the message.
• Create a personalized reward system using props to celebrate small wins in your daily routine. For instance, if you complete a challenging task, you could have a mini 'trophy ceremony' with a fun, makeshift award, adding a touch of humor and satisfaction to your accomplishments.
• Start a social media challenge that ties a popular activity or trend to your cause, encouraging participation and awareness. For instance, if you're raising awareness for literacy, create a challenge where participants share a photo of themselves reading in an unusual place, using a specific hashtag to track engagement and spread the word about the importance of reading and education.
• Start a virtual book club focused on novels and memoirs written by HIV+ individuals or that feature HIV+ characters. This encourages education and empathy through storytelling. Choose books that are easily available and create a discussion guide with questions that help readers connect the characters' experiences with real-world issues faced by HIV+ individuals.

Nightlife as an Extension of ACT UP's Culture

Schulman describes nightlife as a vital extension of LGBTQ+ counterculture in which ACT UP emerged and how it transitioned to become an integrated aspect of the culture surrounding AIDS activism. In NYC, nightlife was an important social and sexual meeting place for generations of gay people for a long time. Before AIDS, sex clubs and bathhouses provided anonymous opportunities; dance halls thrived as communities formed around DJs, drug use, and sexual opportunities. When AIDS came, government mandates shuttered most of these environments, leaving voids in cultural practice that needed to be filled. For ACT UP members, bars and clubs were spaces where we could be ourselves, celebrate our triumphs, mourn our dead, organize, recruit new members, discuss the latest medications, and get laid.

Other Perspectives

• Nightlife often relies on alcohol and drug use, which can be harmful and not reflective of the diverse ways LGBTQ+ individuals seek community and connection.
• The integration of nightlife into AIDS activism culture could be seen as a byproduct rather than a deliberate extension, with the convergence happening organically due to the demographic involved rather than a strategic decision by ACT UP.
• The statement doesn't acknowledge the diversity within the LGBTQ+ community, as not all gay people sought or valued anonymous sexual opportunities.
• The focus on DJs, drug use, and sexual opportunities might overlook the role of dance halls as spaces for artistic expression, musical innovation, and the development of subcultures beyond the hedonistic aspects.
• Government mandates were a public health response aimed at controlling the spread of a deadly disease, not a targeted action to suppress LGBTQ+ culture or social practices.
• The focus on bars and clubs might overlook other crucial spaces where activism and community building occurred, such as community centers, private homes, or through alternative media.

How Video in ACT UP Reshaped AIDS Activism Representation

Within ACT UP, a number of video artists came together to create a revolutionary form of video activism that not only documented the movement but also offered a direct critique of traditional documentary practice, which often objectified and exploited marginalized people.

ACT UP's Challenge to Biased Documentaries Excluding Marginalized Voices

Schulman describes the emergence of activist videos about AIDS as a conscious, defiant riposte to the limitations and distortions perpetuated by mainstream documentaries of that time. Early on, video makers within New York's ACT UP recognized that broadcast media did not understand the lived realities of AIDS activism. When it came to representing PWAs, television producers were often more interested in sensationalism and pathos than in social analysis, medical realities, and the intricacies of activism strategies. This tendency to decontextualize and individualize, to emphasize decline, made most mainstream work not only inaccurate but ultimately damaging because they were creating an inaccurate picture of the crisis.

Practical Tips

• Engage with local community groups or online forums to share information and resources about topics that are important to you, ensuring that the information is accurate and counters prevailing misconceptions. This could mean creating infographics, writing informative articles, or even hosting small educational sessions to disseminate knowledge that combats stereotypes and biases.
• You can deepen your understanding of the AIDS crisis by creating a personal documentary viewing guide that includes questions and prompts to explore the broader context. After watching a documentary, use the guide to reflect on what might have been left out, such as the socio-political factors, the role of activism, and the impact on different communities. This will help you recognize patterns of decontextualization and individualization in documentaries.

ACT UP Video Activists Capturing Protests

In a moment before the general availability of cell phone cameras, portable home video cameras and decks provided an opportunity for ACT UP to document its demonstrations and actions, and to disseminate this material to the membership and to communities around the world. Schulman highlights how video footage captured not only ACT UP's public, visual expressions in outdoor and public spaces, but also the actual methods, strategies, and tactics used while interacting with police during arrests and processing. Through this approach, videos shared important information internally with new members about how to protect themselves when participating in civil resistance. This video, often shot by collectives like DIVA TV, was shared with ACT UP chapters and with activist groups focused on fighting AIDS both nationally and internationally.

Practical Tips

• Organize a virtual film festival that showcases user-generated content on social justice topics. Encourage participants from around the world to submit their short videos or documentaries. Host the festival on a streaming platform and include live discussions or Q&A sessions with content creators to deepen the engagement and understanding of the issues presented.
• Engage in citizen journalism by live-streaming events you attend. Use platforms like Facebook Live, Instagram, or YouTube to broadcast in real-time. This allows others who cannot be present to witness the events as they unfold and can contribute to a broader understanding of social issues.
• Develop a series of role-play scenarios based on historical civil resistance events for use in small group discussions. Gather a few friends or community members and assign roles from a past event, then act out the scenario. This hands-on approach can help participants understand the dynamics of civil resistance and think critically about the decisions and strategies used in those situations.

The Ethical Considerations of Filming AIDS Activism

Schulman describes how filmmaker Alexandra Juhasz joined AIDS activism for political reasons. In her previous work in video and film, she had, as Schulman points out, "grappled theoretically" with the power of the filmmaker over the subject, trying to develop a practice that would create equality with the camera. She soon joined the New York branch of ACT UP, becoming one of the initial group of video creators advocating for AIDS activism. But when she tried to apply her theories and artistic intentions to documenting a support group for those who had AIDS, it became unbearable to her. The women of her group were all dying, in poverty, facing family dysfunction on top of it all, and the camera not only "could not help them" but created a situation where their suffering was fetishized and captured by a power dynamic that was ultimately a kind of exploitation. She was making art at their expense, not with them. Recognizing the moral complexities, Alex withdrew from traditional filmmaking, focusing instead on methods of mutual production and collaboration, starting with The WAVE Project, in which video was not only on the subject matter, but also on the making of the film. This ethical approach influenced most subsequent ACT UP video productions, setting a standard for AIDS activist documentary and laying a foundation for community filmmaking that continues to this day.

Practical Tips

• Use social media to conduct an informal study on viewer perception. Post a series of short video clips where you deliberately change your approach to the subject matter, without announcing the changes. Then, gather feedback from your audience on how they felt about each version. This can reveal insights into how different filmmaking techniques can alter the viewer's perception of the subject.
• Implement equality in visual communication by creating a blog or YouTube channel dedicated to reviewing and discussing films, advertisements, and media content through an equality lens. Analyze and critique the representation of different genders, races, and social classes, offering constructive feedback on how these works can improve in promoting equality. This platform can serve as a resource for others looking to understand and support equitable representation in media.
• Create a personal blog to document and discuss social issues that matter to you, providing a space for deeper engagement. Choose a user-friendly platform like WordPress or Blogger, and write regular posts that explore different aspects of the issue, share personal experiences, and encourage readers to take action. Promote your blog through your social networks to attract readers who care about the same issues.
• Explore your emotional boundaries by journaling about a challenging topic you care about. Write down your feelings and thoughts as you engage with the subject. This can help you understand your limits and how they affect your ability to work on issues that are important to you.
• Create a personal resource map to identify and connect with local support systems. Start by listing all the community resources available in your area, such as food banks, counseling services, and financial aid organizations. Then, reach out to these resources to understand how they can assist you or someone you know in times of need. For example, if you're aware of a neighbor struggling with poverty, you could provide them with information about a local food bank or a nonprofit that offers financial assistance.

The Unique Perspective of ACT UP's Visual Messages

Schulman highlights how the activist video and films produced by and around ACT UP presented an entirely different perspective on people with AIDS than the prevailing media narrative at the time. ACT UP's video content not only challenged inaccurate and stereotypical narratives, showcasing the diversity and resilience of the movement, but also provided a nuanced and often intimate portrait of living with AIDS. Instead of focusing solely on suffering and death, these productions, epitomized by films like Testing the Limits and Elegy in the Streets, captured the joy, camaraderie, creativity, and passion that fueled the ACT UP community as an alternative, offering a more accurate and empowering representation of people with AIDS.

Practical Tips

• Engage in photo voice activities by giving cameras to people in underrepresented communities and encouraging them to document their daily lives. Organize these photographs into an online gallery or a physical exhibition in a local community center. The goal is to empower individuals to tell their own stories through images, which can then be used to spark conversations and challenge preconceived notions held by the broader public.
• Start a small-scale podcast or blog series featuring interviews with people from various backgrounds who have demonstrated resilience in their lives. By sharing real-life stories, you can highlight the multifaceted nature of resilience and provide a platform for diverse voices to be heard, fostering a deeper understanding and appreciation of the concept.
• Engage in a pen pal program with individuals living with chronic diseases. Through regular correspondence, whether via email or traditional mail, you can offer support, exchange life experiences, and build meaningful connections. This personal interaction provides a unique insight into the lives of those dealing with similar issues and can be a source of mutual inspiration and encouragement.

Internal Dynamics, Tensions, and Decline of ACT UP

Schulman's "Let the Record Show" frankly acknowledges the internal conflicts that ultimately caused ACT UP's demise. While she recognizes the contributions of the Treatment and Data Committee participants as they shifted into becoming citizen scientists and then into full-fledged professionals in the AIDS industrial complex, she also reveals that their achievements were often won at a high cost to females, BIPOC, drug users, and those whose access to power within the complex structure of the movement was limited.

Practical Tips

• Create a 'conflict journal' to reflect on past disputes and identify patterns in your behavior and responses. After each conflict, note down the cause, your reaction, the outcome, and what you learned. This self-reflection can provide insights into how to handle similar situations better in the future.
• You can identify and support emerging leaders from underrepresented groups by mentoring someone who doesn't have the same access to power as others. Look for individuals in your community or workplace who show potential but may lack the resources or network to advance. Offer guidance, share your knowledge, and help them connect with opportunities that can elevate their influence.