Women Living with HIV Are Leading the Way

img_4234October 23, 2016

by Bruce Richman, Founder & Executive Director of Prevention Access Campaign

In Honor of the Day of Action to End Violence Against Women Living with HIV #PWNSPEAKS #EndVAWHIV

Since the beginning of the epidemic, people with HIV and allies have had to save our own lives. We have educated, fought and held accountable our medical providers, federal health departments, big pharma, the justice department and the many people and institutions that threatened our survival.  The struggles continue today, and in virtually every space, I’ve come to recognize it’s the women of Positive Women’s Network–USA who are leading the way.

My focus at Prevention Access Campaign is on a very specific part of communication activism: to update the narrative about the “danger” from people with HIV. For many years, HIV experts have known that effective treatment means we’re incapable of transmitting HIV to our sexual partners, but less than 10% of people living with HIV in the U.S. know it.  Even last week at the HIV Research for Prevention conference Dr. Carl Dieffenbach said that people living with HIV who are durably virally suppressed have ZERO risk of transmitting HIV. Yet virtually all HIV communications in the U.S. exaggerate that there is still a risk of transmission, leaving all of us with HIV vulnerable to stigma, harms and injustice. The exaggerated risk and intersecting stigmas leave women with HIV, especially women of color and transgender experience, highly vulnerable to violence.

img_4159Through my relationship to PWN-USA, I’ve come to know many women who are survivors of intimate partner violence, both emotional and physical, because of their HIV status. I’ve met women whose HIV negative partners threatened to reveal their status and have them arrested if they didn’t stay in abusive relationships, and a woman who was arrested for nondisclosure despite not having put anyone at risk.  I’ve heard about doctors who told their patients that they could not conceive children and as a result coerced or forced them into sterilization. And there are many healthcare providers who routinely traumatize and re-traumatize women with HIV.  I honor the sisters of PWN-USA who are not alive today because of the many forms of violence they face.

Many of these stories are beautifully shared on the #PWNspeaks blog.

bruceandcarrierWhat I find so remarkable and uplifting, and I’ll even say superhuman about PWN-USA is the resilience, the strength, the courage, and the wisdom of this collective body of women.  They’re making change on so many levels, and fiercely educating their communities, medical providers and legislators. Just a few examples of success — their members have already revolutionized HIV criminalization, repealing and modernizing laws in Colorado and Iowa, and are leading efforts in other states including Indiana and Florida.  I was happy and lucky to see many of the women of PWN-USA again at the Speak Up! 2016 last month.  I’m honored to be an ally, if indeed I’ve earned that position.

img_4124It has been primarily the women of PWN-USA who have been generous with their time and hearts to encourage me in my work at PAC and who roll up their sleeves on almost every aspect of what we do. They’ve helped extensively with the research and writing, and in our advocacy and community organizing strategies. They’ve helped me understand how language can be stigmatizing and to keep in mind how elevation of the status of undetectable is likely to stigmatize people who experience barriers to getting there. PWN-USA members were the first to respond and bring to life what “undetectable” means to them in our Undetectable=Untransmittable video which has been seen by public health officials at the CDC and HHS as part of our advocacy.  They helped me think more carefully and strategically about relationships rather than barreling ahead like an angry bull in a china shop. They forced me to take 24-hours off a week to focus on self-care. They are a source of continual support especially in helping me choose my battles with the folks who are intent on keeping us all “still a risk” and who sometimes send me into a frustrated rage.

They’ve had a profound impact by helping me realize how much I truly need to listen more, and to recognize and keep my privilege in check. And to use that access to dismantle that structure that oppresses people with HIV and, in particular, continues to perpetuate violence against women in our community.

Our work to reduce core HIV stigma by ensuring access to accurate and meaningful information about risk of transmission is essential, but there’s so much more to be done. Rewiring the thirty-five years of fear of HIV and people with HIV is nothing compared to dismantling centuries of patriarchy and oppression of women, particularly those who face intersectional stigma and discrimination.

I haven’t yet found a community of people living with HIV that is as strong, effective and inspiring as PWN-USA. This work can be so personal, isolating and emotionally difficult. I crave that camaraderie. During those times when I’m overcome by outrage, or when I’m lacking in confidence and energy to keep going, I see the faces and remember the stories of the women of PWN-USA.  I do this work for the rights of all people with HIV, but it’s the women with HIV who enliven me and have taught me the most.  I’m humbled and honored to call so many of them my colleagues and friends.