Dismantling stigma
Positively Aware Editor Jeff Berry
Jeff Berry @paeditor

Sometimes just being open about your status, or sharing your story with someone you trust, can be a powerful weapon in the fight against stigma.

stig·ma

noun

1. a mark of disgrace associated with a particular circumstance, quality, or person.

“The stigma of having been accused of a crime will always be with me.”

According to the CDC, “HIV stigma and discrimination affect the emotional well-being and mental health of people living with HIV. ... HIV internalized stigma can lead to feelings of shame, fear of disclosure, isolation, and despair. These feelings can keep people from getting tested and treated for HIV.”

As I was reading through this issue of POSITIVELY AWARE I was struck by the many different ways we encounter and experience stigma, and the myriad ways we seek to address it in our lives, and in our world. The ways in which we speak truth to power, and the power that there is in sharing our stories, can all begin to dismantle the stigma associated with HIV.

At the United States Conference on AIDS in September, just being in the same space with over 3,000 other advocates can be a powerful experience. The layers of shame and isolation begin to peel away as you realize you are not alone. Read our coverage of the conference beginning on page 28.

One story you’ll read about in this issue is how two activists, Davina Conner and Deirdre Johnson, sought to address stigma in a unique way by getting behind the wheel of a car and driving through the southern U.S. to educate others and raise awareness. The goal was to “show people the impact of HIV, stigma, and depression among women of color, and women of color who are of trans experience,” said Conner.

Michelle Simek writes about some of the technological advances in HIV treatment and prevention, such as long-acting injectables and implants, in her article beginning on page 20. As Dr. Judith Currier points out, many people living with HIV say that the ritual of taking a pill every day can be a barrier to adherence—“a daily reminder of HIV. If we can demonstrate that long-acting injectable treatment will overcome this barrier, it will be a major advance.”

The stigma people encounter sometimes can come from those who work in the very agencies that are supposed to be helping them. Read about multiple, intersecting stigmas, such as the stigma that sex workers face, in “Black and Latino queer men and pleasure,” by Enid Vázquez on page 30.

Sometimes stigma we’ve experienced in the past can motivate us to effect change in the future. In “Deep and Southern Strong,” Sean Black covers the 7th Annual Rural HIV Research and Training Conference recently held in Savannah, Georgia. Fayth M. Parks, PhD, founded the conference in memory of her brother who died due to AIDS in 1989. She recalls the quarantine imposed by the hospital, and the probing, personal questions from the doctor about her brother’s “lifestyle.” She felt angry and confused by it all, but went on to make HIV/AIDS her life’s work.

In “Suddenly Sundered,” long-term survivor Michael Varga relates his experience in the 1990s when he was diagnosed with HIV, and was subsequently pushed out of the Foreign Service while working for the U.S. government in Canada. He eventually became a playwright, actor, and fiction writer, and says the experience drove him to continue to be of service to others and to share his story.

In our annual A Day with HIV photo campaign, you’ll read about a wide variety of individuals from around the world who came together on one day and shared what it means to live in a world with HIV—positive or negative, we are all affected. Many of this year’s participants talk about stigma that they’ve experienced, what they are doing to overcome it, and the power of resilience and community. Sometimes just being open about your status, or sharing your story with someone you trust, can be a powerful weapon in the fight against stigma.

We all experience, and address, stigma in our own personal way, and it is only through our combined efforts that we will break down the walls of stigma once and for all.

Take care of yourself and each other.

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