By David-Elijah Nahmod
There are few topics that aren't included in the new anthology book Bodies and Barriers: Queer Activists on Health.
Edited by Adrian Shanker, a Pennsylvania based queer activist, he was inspired to put the book together because of his own experiences with seeking out health care as a queer man living in a largely straight world. As Shanker writes in the book's forward, he visited a dermatologist's office for a skin cancer screening and found himself in a clinic that made him wonder if he should be there at all.
"The intake forms were unnecessarily restrictive," he writes. "Biased news programming was on full display in the waiting room, magazines in the waiting room did not cater to patients like me, and comments from the clinic staff displayed brazen cultural incompetence."
Shanker did not return for the recommended follow-up appointment but instead found an LGBTQ inclusive dermatologist an hour away. But he realized that not everyone in the LGBTQ community who needed access to health care would have the means to travel out of town for a doctor’s appointment. Many in the community do not have health insurance. When he was a student at George Washington University in their LGBT Health Policy and Practice program, he was struck by the fact that there was no literature written by health care consumers and activists to inform health care professionals and policymakers as to the needs of LGBTQ patients. And so the seeds were planted for Bodies and Barriers.
The book begins with an insightful introduction by Rachel L. Levine, who writes eloquently of the disparities that LGBT people face, and of the importance of creating policies which address the needs of LGBT patients.
The book is divided into four age-oriented sections. In each, the authors address specific health issues and how they related to the LGBTQ community. Topics include providing proper care and support to transgender youth, creating tobacco-free spaces in the LGBTQ community, (tobacco is the leading cause of death among LGBTQ people, according to Shanker) HIV stigma, caregiving for older LGBTQ adults, giving intersex youth autonomy over their own bodies, breast cancer, and gender, and even little-discussed issues such as anal health.
"I came up with the title Bodies and Barriers because our queer bodies deserve health equity," Shanker tells Echo. "Health equity being the dream that all people have the ability to attain the highest level of health care. Our queer bodies are often left behind because of barriers to care, literal stumbling blocks that keep us from achieving the dream of health equity."
Shanker says that some of those barriers to care are clinical and that some are structural, while others are societal.
Promoting the book, in particular making health care professionals aware of it, has been challenging amid the COVID-19 pandemic, but Shanker has been able to conduct a number of virtual trainings and presentations for health care professionals as well as participating in virtual conferences, and doing podcasts.
"This book has received critical acclaim since the beginning," Shanker said. "As a result, it's already started to make an impact in the health care space. It's really important that health care professionals hear stories from LGBTQ patients, so I'm working really hard to continue to spread the word that health care in America is not really working for LGBTQ people, and one of the best ways we can make a difference is for LGBTQ people to tell our stories."
He pointed out that issues pertaining to LGBTQ health are much broader than most people realize.
"I wanted to present this book in a way that demonstrates that our health challenges are pervasive throughout our lives," he said. "So it starts with youth and ends with older adults. It's structured to try to take people on a journey of queer people's lives, even though all of us have different experiences throughout our lives."
Some topics in the book deal with issues that people would expect to hear about, while others are topics that might surprise people to learn about how they relate to the LGBTQ community. In the chapter "Gender, Cancer and Me," author Liz Margolies writes about how breast cancer is a gendered cancer in the way that people interact with breast cancer survivors, breast cancer care, breast cancer support, breast reconstruction, the "pinking" of breast cancer (forced optimism expressed with pink ribbons and pink teddy bears) as a barrier for lesbians, bi women, and trans men.
Shanker himself wrote the chapter on anal health.
"Without sounding cliche, it's about shining a light where the sun don't shine," he said. "Every person has a need to consider anal health, and yet there are very few doctors that will talk about it, especially when you leave the major metro areas."
Shanker's own doctor told him that there were no guidelines for talking about anal health.
"How come under the Affordable Care Act cervical pap tests are covered as an essential health benefit, and anal pap tests are not when it's literally the same procedure?" Shanker asks.
The book concludes with an afterword by Kate Kendell, former executive director of the San Francisco based National Center for Lesbian Rights. Kendell points out that, in spite of the gains that have been made, the community has a long way to go. She notes that some obstetricians still refuse to treat lesbians, and that gay men can still be ridiculed for wanting a prescription for the HIV prevention drug PrEP.
"Health care professionals can do better," Kendell writes. "Policy makers can do better. All of us can do better."
"When we talk about queer health we're not talking about something that's esoteric or niche," Shanker said. "All queer people have had experiences accessing health care at some point in their lives. For many of us, those experiences have not been positive all the time. It's essential that we tell our stories to help to improve care for all of us, and that's what this book does."