Crisis and Care: Queer Activist Responses to a Global Pandemic

By Adrian Shanker and Rea Carey

Crisis and Care reveals what is possible when activists mobilize for the radical changes our society needs. In a time of great uncertainty, fear, and isolation, Queer activists organized for health equity, prison abolition, racial justice, and more. Nobody who lived through the COVID-19 pandemic will soon forget the challenges, sacrifices, and incredible loss felt during such an uncertain time in history. Crisis and Care anthologizes not what happened during COVID-19, or why it happened, but rather how Queer activists responded in real time. It considers the necessity to memorialize resiliency as well as loss, hope as well as pain, to remember the strides forward as well as the steps back. Activist contributors Zephyr Williams, Mark Travis Rivera, Jamie Gliksburg, Denise Spivak, Emmett Patterson, Omar Gonzales-Pagan, Kenyon Farrow, and more provide a radical lens through which future activists can consider effective strategies to make change, even or perhaps especially, during periods of crisis.

• Language: English
• Publisher: PM Press
• Release date: Aug 16, 2022
• ISBN: 9781629639499

Adrian Shanker

Adrian Shanker is editor of the critically acclaimed anthology Bodies and Barriers: Queer Activists on Health (PM Press) and the executive director of Bradbury-Sullivan LGBT Community Center in Allentown, PA. A specialist in LGBT health policy, he has developed leading-edge health promotion campaigns to advance health equity through behavioral, clinical, and policy changes. Adrian serves as Commissioner and health committee co-chair on the Pennsylvania Commission on LGBTQ Affairs.

Book preview

INTRODUCTION

Adrian Shanker

All of a sudden, the world stopped. Or at least it felt that way. Airports were empty, public schools closed, colleges sent their students home. The media even reported that the COVID-19 shutdown led to a drastic reduction in air pollution, leading to alpine weather in the crowded city of Delhi. Quite literally, nothing felt normal. We started to hear from friends that someone they knew was sick, or that someone they knew had died. We heard from many more that they were out of work, or worse: required to work without personal protective equipment to keep themselves safe. In this moment, everything that seemed impossible became our reality.

These were dark times, but when it’s dark out, there is an opportunity to shine a light, and that’s what this book is about.

This is not a book exploring the infectiousness of a novel coronavirus or recounting experiences for the archives. Many others will write or edit those books. This is a book about queer activism and resiliency during a global pandemic. It is about what we learned from a seminal moment in our lives and how we will utilize these lessons to inform our activism in the future. We will explore how queer people advocated, insisted, and demanded that our health and economic needs be met. We will explore how queer people held each other and cared for each other and modeled resiliency for the whole world to see. We will explore how queer activists responded to a global pandemic.

The COVID-19 pandemic was not a fleeting moment in time. It was a time that anyone who lived through it will remember for the rest of their life. Our lives were traumatically disrupted, with any semblance of normalcy gone. Queer activists made hand-sewn masks to keep their communities safe. Queer activists created mutual aid programs to meet the urgent needs of the most marginalized members of our community. Queer activists used technology to create virtual connections many of us didn’t know existed before. Queer activists demanded that the broken health care system respond to queer community needs. Queer activists asked pointed questions. We demanded that our government prioritize people over profits. We demanded that workers be treated as heroes. We advocated for the abolition of prisons, perhaps especially when they resembled petri dishes likely to spread a dangerous virus. We demanded data collection about our community’s unique vulnerability to COVID-19. We demanded information about how to safely have sex during a pandemic, and when information wasn’t available, queer people created the information ourselves.

In short, activism, community care, and resiliency saved us from loneliness, boredom, and desperation. The urgency of every fight was motivation to get out of bed the next day. The determination to hold our community close, even from afar, meant that we could find new ways to care for each other. LGBTQ+ people were clear that this was not our first virus, that we as a population knew something about how to survive a plague. Queer people were not the ones demanding that businesses reopen before it was safe. Queer people were not the ones questioning why we should wear face masks or protesting vaccine mandates. Queer people were not the ones trying to put profit before people. Queer activists responded to COVID-19 with love, care, and community. Queer activists responded with hope and resiliency. Poet and activist Grace Paley once said, Let us go forth with fear and courage and rage, and that’s exactly the combination of feelings we held in our hearts. Scholars will be writing and retelling the stories from the COVID-19 pandemic for years. The lessons we learned in the first half of 2020 are lessons that will inform our activism for years to come. Just as this was not our first virus, it also is unlikely to be our last. The intention of this book is to consider these lessons, so we can collectively apply them as we prepare our communities and our world for the crisis points we will encounter next.

Living through a pandemic is a traumatic experience. This book seeks to lift up queer responses to COVID-19. Queer people responded to a crisis with care, and by doing so lived out Paley’s directive of going forth with fear, courage, and rage. All that we had was each other. Luckily, it turns out that this was all that we needed.

ELIMINATING HEALTH CARE DISCRIMINATION DURING A PUBLIC HEALTH CRISIS

Jamie Gliksberg and Omar Gonzalez-Pagan

The COVID-19 pandemic markedly changed our lives in 2020. In the span of five months, more than two million Americans tested positive, and over one hundred thousand Americans died in less than four months.¹ The public health crisis that ensued showed in particularly stark terms why access to health care is essential for every person and why we need to foster trust between health care providers and the public.

Unfortunately, LGBTQ+ people, like many other minorities, face systemic and pervasive discrimination in many aspects of life. This includes, quite dangerously, the realm of health care. Oftentimes, when accessing health care, LGBTQ+ people encounter disparate treatment and lack of coverage. Statements like "we don’t provide services to people like you and your kind needs to go elsewhere" are tragically familiar to LGBTQ+ people.

In this short essay, we focus on three points. First, the lived experiences of LGBTQ+ people and their families, which demonstrate why protections from discrimination are necessary in health care. Second, how existing protections rooted in state law and, most particularly, the Affordable Care Act (ACA), enacted in 2010, have helped remedy some of the discrimination faced by LGBTQ+ people. However, these protections are under attack and we must ensure their expansion, not their diminishment. Last, we discuss, based on our experience as movement lawyers, how litigation efforts that represent LGBTQ+ organizations and LGBTQ+-affirming health care providers can help protect our victories and turn away the misguided attacks on LGBTQ+ people’s access to health care.

Why We Need LGBTQ+ Health Care Protections

There are approximately thirteen to fourteen million LGBTQ+ people in the United States.² Yet discrimination against LGBTQ+ and gender nonconforming people in health care is rampant. LGBTQ+ and gender nonconforming people routinely report: being refused needed care; health care professionals refusing to touch them or using excessive precautions; health care professionals using harsh or abusive language; being blamed for their health status; and health care professionals being physically rough or abusive.

In 2010, Lambda Legal published a study focused on the experiences of LGBTQ+ people with health care. The study, When Health Care Isn’t Caring, showed that almost 56 percent of LGB people and 70 percent of transgender and gender nonconforming people have had one or more of the aforementioned discriminatory experiences.³ In fact, 8 percent of LGB people and 27 percent of transgender and gender nonconforming people have been denied health care altogether.

Subsequent studies have further documented these experiences. A 2017 study by the Center for American Progress similarly showed that LGBTQ+ people face disturbing rates of health care discrimination: from harassment and humiliation by providers to being turned away by hospitals, pharmacists, and doctors.⁴ According to the 2017 study, 8 percent of LGBQ respondents stated that a doctor or other health care provider refused to see them because of their actual or perceived sexual orientation, and 6 percent said that a doctor or other health care provider refused to give them health care related to their actual or perceived sexual orientation. The numbers, once again, were even more alarming for transgender people, as 29 percent of transgender respondents said a doctor or other health care provider refused to see them because of their actual or perceived gender identity, 23 percent said a doctor or other health care provider intentionally misgendered them or used the wrong name, and 21 percent said a doctor or other health care provider used harsh or abusive language when treating them.

Similarly, the 2015 US Transgender Survey, a study that surveyed 27,715 transgender and gender nonconforming individuals, showed that one-third of transgender people who had seen a health care provider reported having at least one negative experience related to being transgender, such as verbal harassment, refusal of treatment, or having to teach the health care provider about transgender people to receive appropriate care.⁵ In addition, more than half of transgender people who sought coverage for gender-affirming health care were denied. More specifically, one in four of those who sought coverage for hormones and 55 percent of