It's Time for the Next Generation of HIV Activists to Lead

Phill Wilson (left) and Paul Kawata share the stage at the 2018 U.S. Conference on AIDS.
Tuyishime Claire Gasamagera

This year's United States Conference on AIDS (USCA) focused on the importance of activism in the fight against HIV. Activism played a crucial role in the early years of the epidemic -- bringing pressure to bear on governments, industry, and society to respond to the epidemic with urgency and compassion.

"Today, as we face an uncertain political environment, HIV activism is needed more than ever," said NMAC executive director Paul Kawata. "We hope this conference will reignite the kind of passion and action in the HIV community that we saw at the very beginning. If we are truly going to end this epidemic, that kind of commitment is what we will need from everyone."

To reignite the passion and action and renew commitment in the HIV community, Phill Wilson, president and CEO of Black AIDS Institute, delivered a historic keynote speech during the plenary session on trauma-informed care. Wilson talked about how activists in the AIDS movement live with trauma, and he explained why we need to heal together. Wilson acknowledged that the HIV community is aging and burning out and insisted on healing and preparing a young generation of leaders. At the end of this year, he will be leaving his role at Black AIDS Institute, an organization he founded in 1999.

"If we have been in the battle, everything we do is trauma informed," said Wilson. "We will not heal unless the same investment committed to fight HIV/AIDS is committed in healing ourselves. It is in the caring and the fighting and the loving that we live forever."

Wilson continued his speech and talked about preparing a young generation of leaders in the AIDS advocacy movement. Paul Kawata moved to the stage to pay tribute when Wilson invited people aged 35 and younger to stand up. I was so proud to be among those who stood up and listened to his final words addressed to older people: "The best gift we could give this movement is to step aside. ... [T]his younger generation is smarter, younger, wiser, more capable, and they have the foundation that we built." Then, Wilson addressed the young people in the audience, saying, "You have got this! You will end the epidemic."

NMAC is leading in preparing a young generation of leaders by organizing a fellowship for young people for each USCA. At the same time, NMAC is organizing a fellowship for people aged 50 and above who are aging with HIV.

Views From the Next Generation of HIV Activist Leaders

I was privileged to meet two scholars from both fellowships and sit down with them for an interview. During our conversation, they shared their challenges and opportunities and how they can best continue to work together to prepare a young generation of leaders.

"I agree with Mr. Wilson," said Marmina Miller, a Youth Initiative scholar for USCA 2018. "I will add to it that we are not the leaders of tomorrow, but we are leaders now!"

"Young black women have to be at the forefront of the reproductive justice movement," Miller continued. "Not only are young black women more likely to receive an HIV diagnosis than our white counterparts, but we are also more likely to die during childbirth and receive a late cervical cancer diagnosis. These reproductive and sexual health issues come from racial disparities in health care. Poor health outcomes for women of color do not just reveal bad policy, but they are evidence that the U.S. is failing to meet its human rights obligations to provide equal access to reproductive health care."

Many of the older women living with HIV had trauma related to the issues Wilson discussed in his speech, such as living with HIV for so long. They have fought for the rights of women living with HIV. They have built a strong foundation for emerging young women leaders to stand on; however, there is still a generation gap. In my opinion, older women living with HIV are not sharing enough of their experiences or transferring their knowledge and skills. Some have been in HIV work for so long that they can't see their lives having a meaning beyond activism. As a result, Wilson's words about stepping aside didn't resonate well with some. In addition, older women often cannot relate to young women's experiences living with HIV, and their struggles are not the same.

When asked what she expected to learn from young women from the Youth Initiative, Kneeshe Parkinson, an HIV 50+ Strong and Healthy scholar, replied, "I would like to know how they are learning about sexual health from their community. How do young women view older women living with HIV? Who are their mentors? I was inspired that so many young people have their own narrative about living with HIV and overcoming obstacles with a movement of change and have shared how this life-changing diagnosis has empowered them to be the face and voice of their community."

Listening to these women from different generations, it's obvious that a lot of things still need to be done to prepare a young generation of women in the AIDS movement.

As a young woman living with HIV, I am still struggling to convince older women that I need childcare in order to attend a meeting. Older women forget even to book children- or baby-friendly venues for meetings (venues where there are rooms for breastfeeding, bathrooms have changing tables, dining rooms have child/baby high chairs for feeding, and hotel rooms have cribs). Older women who have passed the age of procreation overlook all these small needs. Some of the older women use their oppression trauma by sharing their stories of how they had to struggle with babies, and how they were not welcome in public places with babies, as a way to convince me that I have to step aside and care for the babies, then come back when they are grown. In other words, as a young woman in this movement, I am acceptable only if my body can function like that of men. All these small nuances need to be talked about to create an activism world that is friendly to young women living with HIV and meeting their needs.

When asked what she wishes to learn from the women over 50, Miller replied, "I would want to know the secrets to long-term healthy self-care while being an advocate/activist. I want to know how the 50-plus fellows handled internal conflicts within the movement while maintaining a united front. I would also love to know more about their personal stories and how they live intersectional lives as women, men, LGBTQ, mothers, fathers, so that we can start collecting their memories. This is the first generation to face HIV and aging, and their struggles and triumphs must be recorded and shared."

Older people living with HIV, such as Phill Wilson, are our heroes. We look after them, and we must face the reality by acknowledging his words: "The best gift we could give this movement is to step aside. ... [T]he next generation is smarter, younger, wiser, more capable, and they have the foundation that we built."

"With the graying of HIV, and with this epidemic entering its fourth decade, a new batch of problem-solving leaders will be emerging," said Miller. "While we young adults can be impatient and spoiled, we are also confident, socially responsible, and savvy with technology. It is our elders' responsibility to prepare us to lead, but it is our job to listen intently."

Tuyishime Claire Gasamagera is a motivational public speaker, life skills coach and visionary operations executive; fluent in over seven languages including English, French and Kinyarwanda; anti-AIDS activist, freelance writer, lobbyist, and consultant with solid experience managing all levels of projects including fundraising, advocacy, budgeting, and administration on the national, regional, and global level.