The HIV Crisis of the early 80’s wiped out thousands of gay men in the United States.
Lots of literature exists about HIV. It includes information about populations most at risk of HIV and the new scientific breakthrough in HIV suppression and treatment. But now two nurses, Ellen Matzer and Valery Hughes, have written about working on the frontline during the early years of the HIV crisis in New York City.
In their book ‘Nurses On the Inside: A Look at the AIDS Epidemic Through the Decades‘, they narrate the gruesome and sad reality of HIV and AIDS at that time. But those stories would be familiar to any person who had been close to people living with HIV.
Many gay men lost a beloved friend or lover with a whole community threatened to extinction. The nurses were hard at work, spending endless nights caring for patients.
This book is an ode to these nurses: ‘They want to tell this story to give a voice to a generation lost, encouraging the world to remember one simple thing: this history cannot be repeated.’
The book tells of a sad tale but I do believe we should present them with genuine unabridged stories.
Ellen Matzer and Valery Hughes
I spoke with the nurses about their experience.
They explained they mixed medical terminology and relatable anecdotes so ‘people should understand medical issues as an aid to negotiating the system’.
‘I think we both tend to just write the real story and how we reacted to the situation,’ Matzer and Hughes told me by email.
‘These stories are all real experiences… Many of these people were our friends and colleagues as well as patients, and we were horrified by our own system (the medical/hospital system I mean) so it was our authentic response to what was happening.’
They explained that their book has a message that you can’t deny people healthcare or education based on their identity.
‘Everyone needs to understand about health and health care for their own well being,’ Hughes and Matzer said.
‘If we marginalize people, deny them health care and education, we may possibly have another epidemic on our hands in the future; and it won’t only affect the disenfranchised. ‘
HIV in the 21st century
One of the reasons they wrote the book was to teach younger gay men of what happened before them
‘We wanted to tell the stories mainly so they would not be forgotten,’ they said.
‘Valery works a lot with Prevention and sees a lot of young guys who are really only marginally aware of their risk and she spends a lot of time talking about PrEP and risk reduction. If any of them were interested in reading the book we hope it would be an eye opener for them too.’
They added: ‘But the big goal is to make people aware of the risk of throwing away part of your population because you consider them disposable.’
‘People are not disposable. Gay people are not worth less than straight people. Women of color are not worth less than white women. People with substance abuse problems are not worth less that those without,’ the women said.
‘We are all human together and the world needs to come together and care for our people. That means health care for all, respect for people with differences, acceptance that humans are sexual beings, acceptance that people with substance abuse issues are struggling and not being bad.’
As I flip through the pages of the book, I found myself imagining the hospital hallways and emergency rooms where Ellen and Valery treated patients for the opportunistic infections that weakened their body.
To me it would be the same saddening reality whether you were at St. Claire’s Hospital or Lenox Hill Hospital, or any hospital in any country here in Asia.
I cried at one point as I read through the chapters because I know these were not made up stories. These were real; these were people! This is what made the book so striking for me.
As a young gay man who was luckily born during a time when treatment is relatively available (at least in my country, the Philippines), where preventive measures are common knowledge, laws have been enacted to protect forms of discrimination on the basis of HIV status, there is a global movement by civil society and states to eradicate new infections, and when new scientific knowledge strengthened medical practice for care. But this book is a reminder of the importance of movements for universal health coverage. Also of HIV/AIDS treatment and care, and decriminalization of homosexuality.
Why everyone should read this book
Overall, a great read and I highly encourage people to be inspired by this book.
Finally, I would like to thank the frontline health service provides, the nurses and doctors who were there for the community in the ‘80s and today. It is your courage and dedication to your profession that has helped to save the lives of countless individuals.
Justin Francis Bionat is a project officer at Youth Voices Count, a regional network of young LGBTIQ individuals working on human rights advocacy. Justin is the LGBTIQ representative of the United Nations Youth Advisory Board (UNYAB) in the Philippines. He is passionate about coffee and everything queer. Twitter: @rainbowgrindsph