As we live through this ongoing global pandemic, I have been regularly reflecting on the lessons we could learn from our past, especially in terms of the history and trajectory of HIV/AIDS.
Over and over again structural oppression and marginalization has fueled HIV/AIDS. Health disparities, poverty, addictions, homophobia, racism; all create ripe conditions to allow a pandemic to get out of control. Ultimately, collective community action is how people have survived and fought back.
So, in honour of World AIDS Day, here are 10 books to dive in and learn lessons from past epidemics. Three focus on the impact of the HIV/AIDS pandemic in the gay community, three on how HIV/AIDS developed in other communities in North America, and three others more specifically on AIDS in Africa.
I have also included one novel at the end because it’s well worth the read!
How to Survive a Plague: the Story of How Activists and Scientists Tamed AIDS by David France
From the creator of the documentary by the same name, David France provides an in-depth insider account of the battle to fight and survive AIDS – including the founding and crucial work of ACT UP (AIDS Coalition to Unleash Power), an organization clearly devoted to direct political action.
It’s the story regular folks banding together in the face of a devastating plague, government indifference, and deeply rooted homophobia. You’ll have no shortage of things to feel when diving in to this book: desperation, inspiration, denial, fear, loss, empowerment, revolt, and ultimately survival.
At over 500 pages this is a substantial book with so much packed inside. It is well researched, well presented and narrative driven, making for a great read.
AIDS Doctors: Voices from the Epidemic by Ronald Bayer & Gerald M. Oppenhemer
Based on the oral interviews of nearly eighty doctors, this book tells the story of the AIDS epidemic straight from the front-lines. Doctors share their stories from first encountering AIDS in the 1980s (“the dark years”) up until a more optimistic and hopeful time by the year 2000.
The stories inside are well collected and well told. I’ll note that it is very doctor focused, as you’d expect given the title, but it means you won’t find the stories of patients, families and community the way you might in other books on this time period.
When reflecting on this book I can’t help but think of the many, many doctors and other health professionals currently sharing their stories, trying to warn us to act to reign in COVID right now, and what heartbreaking stories they’ll have to share after this is all over merely because our governments were too stubborn to listen.
When We Rise: My life in the movement by Cleve Jones
If you’ve watched the film Milk, you’ll recognize Cleve Jones’ name. When We Rise is his memoir.
He got his start in politics and the LGBTQ movement by being drawn in to the campaigns of Harvey Milk. After Harvey’s assassination he continued on in the movement, eventually founding the San Fransisco AIDS Foundation.
Both powerful and hilarious, Jones tells his personal stories while providing important historical and political context. Ultimately, it’s a story of community in turbulent times. Cleve Jones was at the forefront of the movement for LGBTQ rights and the fight against AIDS. He’s a hero to many and this book is well worth a read.
Surviving HIV/AIDS in the Inner City: How Resourceful Latinas Beat the Odds by Sabrina Marie Chase
In the late 1990s, Newark, New Jersey had high rates of poverty, and along with that, some of the highest rates of HIV/AIDS in the country, disproportionately impacting Latina women. This book is based on the study of the experiences of seventeen HIV positive Puerto Rican woman in Newark between 1997 and 2000.
The author embeds herself in these women’s lives and communities. She builds trust with them, attends medical appointments with them, conducts interviews, experiences their day to day lives and interacts with social service and community supports. All together it brings together an in-depth look at the lives of these women navigating being HIV positive in Newark.
Through her study, Sabrina Marie Chase breaks down why some women struggled, and ultimately died, while others were able to survive and find ways to thrive. It’s a story that truly highlights how we aren’t all equal, how racism, violence, addiction, poverty and so much more determine our health and make some more vulnerable to a pandemic than others. How there was a need for these women to be resourceful and to build stronger social and cultural capital just to be able to access the care and supports that should be available for all.
You’re the First One I’ve Told: The Faces of HIV in the Deep South by Kathryn Whetten and Brian W. Pence
It may not be discussed or studied as often, but it’s worth noting that the Southern United States have had a particular intense HIV epidemic. This book from 2013 draws from the interviews of twenty-five folks living with HIV in the American South. All are living in poverty, many are women, and many are racialized.
The social determinants of health run deep in these stories. As do the impacts of stigma and intolerance. This book is yet another reminder that health care outcomes have structural roots, and that our systems often fail or ignore the needs of marginalized communities. Ultimately, these communities are bearing the brunt of the HIV epidemic in the American South.
A Thousand Dreams: Vancouver’s Downtown Eastside and the Fight for its Future by Larry Campbell, Neil Boyd and Lori Culbert
I wouldn’t put this one on the top of my reading list, but this book covers an interesting period of Vancouver’s Downtown Eastside. Both HIV rates and tragic deaths from addiction were on the rise, and of course, right wing politicians could care less. Their determined absence of leadership was leaving people to die in the streets. (Sound familiar?)
There’s a lot in here, but I found Larry Campbell’s political career to overshadow a lot of the stories within, from being chief coroner to becoming mayor and eventually finding himself getting on board and fighting for Vancouver’s first safe injection site.
This is a timely read as we grapple with an ongoing opioid crisis on top of this global pandemic. Too many are dying and too little is being done. This book can help remind us all of the need for sustained community action to spark political leadership, if we hope to properly deal with poverty, housing, addictions, public health, and so much more.
28 Stories of AIDS in Africa by Stephanie Nolen
You may notice a theme of personal stories and oral histories on this list, but I do find it a compelling way to gather and share a time in history. As the back cover says this 2008 book:
“puts a human face on the African AIDS pandemic. Through riveting personal stories of love, loss, courage and survival – one for each of the million people living with HIV/AIDS in Africa – she brings to life men, women and children involved in every aspect of the pandemic.”
Inside you find real stories of real people. 28 powerful, humanizing stories, from young and old, that weave in the political and societal stories along with. Pandemics are global, but the impacts fall disproportionately on poorer nations, especially when wealthier countries like Canada refuse to do our part or even keep our weak international commitments. This book is a powerful reminder of the need for us to do better and to think more deeply about what social justice means, especially during a pandemic and especially with COVID-19 vaccines on the horizon.
Race Against Time by Stephen Lewis
Stephen Lewis’s 2005 Massey Lecture series are contained within this book.
Based on his on the ground experiences as the UN Special Envoy for HIV/AIDS in Africa, Lewis oozes with his passion, and blunt frustration, at our inability to come anywhere close to meeting the Millennium Development Goals. He lays out clearly what we committed to and what we failed to do.
Yet throughout he is a champion for the victims of the pandemic, and relentlessly hopeful we can do better. Stephen Lewis is known for being an amazing orator, and that shines through his speeches in this book. This is from 15 years ago yet still worthwhile and as timely as ever to read.
Unimagined Community: Sex, Networks and AIDS in Uganda and South Africa by Robert J. Thornton
Inside this fascinating book Robert J. Thornton “explores why HIV prevalence fell during the 1990s in Uganda despite that country’s having one of Africa’s highest fertility rates, while during the same period HIV prevalence rose in South Africa, the country with Africa’s lowest fertility rate.”
Inside is as fascinating, in-depth analysis of both countries showing clearly how cultural and social factors were crucial for reducing HIV transmission, far beyond any individual behavioural choices.
A timely reminder that structures matter, and that a solid understanding of social factors, privilege and collective cultural change are crucial for tackling public health problems; especially during a pandemic.
The Great Believers by Rebecca Makkai
This novel draws you in with an impressive intertwining of two stories, taking us back and forth between the height of the Chicago’s 1980s AIDS epidemic and Paris thirty years later.
Rebecca Makkai took her time to do the research. It is clear she was committed to bringing the AIDS crisis and the 1980s gay community in Chicago to life, and it shows.
Even though I finished this book months ago, it has stuck with me since. There is plenty to reflect on about what it meant for those living thru a devastating pandemic; their safety, the choices they made, their community, and so on. I was left not just thinking of the tragedy of the many that were lost, but also for what surviving it all meant for those who lived on.
This is the kind of novel you just can’t put down. It’s beautifully written. It is heartbreaking, yet humorous. It sparks all sorts of emotions. It is clear why it has been nominated for so many awards. I’ll admit I stayed up far too late finishing it. And if you’re someone who enjoyed A Little Life, you’ll definitely enjoy this book.
Want to help support important HIV/AIDS community work?
Today is World AIDS Day AND also Giving Tuesday. Many organizations have matching programs happening right now, making it a great day to donate. Below are a few organizations that I will be supporting today. They are doing crucial public health work to prevent HIV and/or are working hard to support those living with HIV/AIDS throughout these hard times. I encourage you to take a moment to support them as well.