"Hear From Us Instead of Talking About Us": The Next Generation of HIV/AIDS Advocates

by Darcy Kues
Legal Intern

Though many young people spoke positively about their experiences at the recent XIX International AIDS Conference, others said their contributions were undervalued. What barriers stand in the way of youth fully participating in the HIV advocacy landscape? How can we guarantee that youth voices are heard and respected in the national HIV/AIDS conversation? 

In late July, thousands of persons living with HIV/AIDS (PLWHA) and their advocates came together in Washington, D.C. to share their experiences, exchange information, and brainstorm next steps in the fight against HIV/AIDS. The XIX International AIDS Conference (AIDS 2012) attracted prominent world figures in politics, public policy, research, education, and public health alongside grassroots community organizers and activists from around the world. Panels and presentations at AIDS 2012 covered a vast array of topics, including recent scientific advances in treatment, HIV prevention efforts, HIV criminalization, and efforts to fight stigma and discrimination. A number of AIDS 2012 activities involved youth, including a week-long Youth Pre-Conference organized by and for youth. CHLP's Adrian Guzman presented on domestic and international criminal treatment of HIV to an audience of young people from around the globe.

But were members of the youth community meaningfully involved by AIDS 2012 organizers and attendees? In an article titled "Fighting to be heard: Youth AIDS activists struggle for a seat at the table," several young people said their contributions at AIDS 2012 had been undervalued. Others felt tokenized. "You need to directly hear from us instead of talking about us," said Lawrence Stallworth, aged 20. "We're the up-and-coming generation, and you have to get us ready for that."

Before AIDS 2012 got underway, working with members of SMART Youth, a Harlem-based youth development and leadership program for 13- to 22-year-olds affected by HIV, to prepare them for attending the conference, I wondered whether they also felt marginalized within the larger HIV advocacy community. I asked a number of them about the community's strengths and weaknesses in fostering youth involvement and strategies for increasing youth power and recognition.

By and large, they spoke positively about their experiences at AIDS 2012. Christina, co-founder of SMART Youth, said youth leaders are becoming more assertive about increased visibility because they are tired of being ignored or told they cannot contribute to change because they are too young. Lindsay, a social work student, said AIDS 2012 provided her with new ideas on how she could communicate what she had learned to her community. However, she believes that older, most established advocates must respect young people's experiences with HIV and support their ideas about the next phase of HIV advocacy.

Barriers to Youth's Full Participation in HIV Advocacy

Although many HIV advocates have attempted to incorporate and prioritize the perspectives of young people, barriers preventing some youth from feeling fully present and heard still exist. Inadequate sexual health care and sexual health capacity building have a huge impact on young people, yet their visible involvement in established and mainstream HIV and sexuality advocacy on this issue appears quite limited. Since 1995, over $1.5 billion has been spent promoting abstinence-only sex education. And although President Obama has redirected federal funding towards evidence-based comprehensive sexual health education, legislators in states including Texas, Tennessee, and Wisconsin continue to push legislation favoring abstinence-only education. A 2004 Congressional report found that "80 percent of the most popular federally funded abstinence-only education programs use curricula that distort information about the effectiveness of contraceptives, misrepresent the risks of abortion, blur religion and science, treat stereotypes about girls and boys as scientific fact, and contain scientific errors." In July 2012, a study linked abstinence-only programming to high rates of HIV infection in young African-Americans in Louisiana, currently ranked #1 for HIV incidence in young people ages 13 to 24 years in the United States. As documentary filmmaker Lisa Biagiotti said, "Education at least should be one of the first drivers of change. If you can't even talk about what's going on, you're setting yourself up for failure." According to a UNAIDS feature story, "when young people are given the tools and incentives to adopt safe behaviours, they consistently demonstrate the capability to make responsible choices, and encourage others to do the same." Yet in talking about what's going on with policy on sexual health capacity building, the young people at the center of the discussion seem to be largely absent from the front of the stage.

Megan Mulholland of QUEEROCRACY, a New York City-based grassroots social and economic justice organization, pointed to structural barriers that prevent people, regardless of age, from engaging in conversations about HIV/AIDS. She emphasized language as one such barrier: "People understandably feel out of the loop when it comes to the political jargon used to speak about HIV/AIDS advocacy…. Failing to make these conversations accessible to everyone is detrimental to the work; it prevents many people who are directly affected by HIV, young and old, from feeling included and maintaining their involvement."
Additionally, when young people are represented in policy advocacy, their involvement invariably seems to be limited to "youth" issues rather than the full array of policy discussions involving treatment access, PEP and PrEP, confidentiality and data sharing issues, and so on. Megan pointed out that "youth-specific" programming segregates young people from other advocates. Instead of a synergetic conversation between young people and adults about strategies for mobilization around HIV/AIDS, youth are expected to address issues specific to young people, while adults handle everything else. Megan said that although issues unique or especially pertinent to young people are important to discuss, "young people shouldn't be the only ones talking about them. Equally important is including young people in all HIV/AIDS conversations, not solely asking us to speak for the 'young people problems.'" When advocates construct these barriers, consciously or not, they minimize the youth perspective and consequently detract from the development of effective strategies for mobilization. QUEEROCRACY's intergenerational framework is a good example of how advocates of all ages can collaboratively engage on an equal footing on issues relevant to the full spectrum of communities affected by HIV.

How Do We Ensure Youth's Meaningful Participation in HIV Advocacy?

There are a number of ways that established HIV advocacy organizations can increase both youth participation and the likelihood of success on important policy priorities. First, we must do more to ensure the sexual health and HIV literacy of young people at an early age through access to comprehensive, LGBTQ-inclusive sexual health care and sexual health capacity building. The YouthForce Declaration, a product of the AIDS 2012 Youth Pre-Conference, states that "all young people have the right to sexual and reproductive health services that are accessible, available, safe, affordable, quality-approved, youth-friendly and adapted to [young people's] specific needs." By improving health outcomes and building confidence and self-respect, these services and programs serve as a necessary first step in growing a new, knowledgeable generation of sexual health and HIV advocates.

Another important strategy for involving young people is to make a concerted effort to prioritize, rather than tokenize, their involvement in training opportunities that cultivate the knowledge and advocacy skills necessary to engage effectively with leaders and stakeholders. Christina from SMART Youth stated that youth, regardless of HIV status, need more opportunities to attend events and conferences like AIDS 2012. Megan from QUEEROCRACY said she and other members prioritize educational opportunities in their campaigns, including brief teach-ins before meetings or clarifying acronyms or phrases during discussions, so that people can keep up with the language used in HIV advocacy settings.

We also have to re-think our artificial advocacy "spheres" that tend to box or leave out groups of people affected by HIV. Youth involvement in HIV advocacy can encompass prevention and the complexities of PrEP and fair and just treatment for PLWHA. Christina from SMART Youth emphasized that both positive and negative youth have a stake in these things and should be recruited to gather and mobilize. Harold, an HIV-negative youth who traveled with SMART Youth to AIDS 2012, later wrote about his experiences, saying that he "gained something irreplaceable by informing [him]self and humanizing the virus" which inspired his interest in HIV advocacy.

As young people continue engage with advocacy in response to the ongoing HIV epidemic, we must do better to make sure that our advocacy efforts incorporate the experiences, creative energy, and passion of young people. As Megan from QUEEROCRACY said, "If you'd like us to feel like our voices are respected, truly respect them; not because they are the 'young people voices' but because they are voices who are affected by the AIDS crisis and voice that want to speak up to see that it ends."

Darcy Kues is a Legal Intern at The Center for HIV Law and Policy. She completed her undergraduate coursework in Women's and Gender Studies at University of Texas at Austin. She currently attends the University of Washington School of Law, where she is active in Law Women's Caucus, Outlaws, and Law Students for Reproductive Justice.