Youth engagement in HIV activism

This year marks the 18th International Youth Day (12 August), first observed by the United Nations General Assembly in recognition of young people as agents of change. In this Then and now series, six activists across generations share how living with HIV shaped their personal journeys toward activism. Three of them began their work in the earliest days of the epidemic, and they speak about the legacy of their advocacy. Three, new to HIV activism, share what drew them to the movement. Each person reflects on how to build and sustain the work of HIV activism. Here are their stories…

Eric Sawyer | Zhanna Abashina | Erika Castellanos | Gautam Yadav | Kate Thomson | Grace Ngulube

Eric Sawyer, 64 United States

Eric Sawyer (64), was born and grew up in a small town in upstate New York, USA. He studied psychology and obtained a Master’s in Public Administration from the University of Colorado at Boulder. He got his start as a youth activist in 1982, back when the virus had not been discovered and people spoke of Gay Related Immune Deficiency, or GRID. Eric worked for many years as the Civil Society Partnership Advisor at UNAIDS and is a Founding Member of AIDS Coalition to Unleash Power (ACT UP), as well as the Co-Founder of Health GAP. This is Eric’s story…

I was 26 years old in 1980 when I moved to New York. At that time, it was the epicentre of the epidemic where most cases were reported just prior to the global outbreak of AIDS. They didn’t know how HIV was spread or how to treat it, and everybody died from AIDS within one or two years of diagnosis. It was a time of misinformation, of stigma and discrimination.

I witnessed my partner literally wasting away in front of my eyes. For months, I was full of grief and anger that nothing could be done. Then six months later, I received a call from Larry Kremer, saying that he wanted to form a civil disobedience organization to demonstrate against the government’s inaction and the drug companies’ foot dragging to try treatments. He wanted my help. My grief, anger and fear all had a common cause and now a focus. So I gladly joined Larry’s efforts and helped start ACT UP.

At the time, the US government and mainstream media, as well as religious leaders, were largely uninterested in the health crisis unfolding before our eyes. Newspapers declined to do reporting on an issue tied to people who were injecting drugs, gay or involved in sex work. This left the public in the dark. And with no public outcry to support our pleas, the government dismissed our mass deaths as something deserving neither sympathy nor action. People were rejected by their families, evicted from their apartments, denied healthcare. It was a brutal apathy that sparked our sense of urgency to take to the streets to change public opinion and also to force the government and the drug companies to respond in a companionate, empathetic and appropriate way. We were literally fighting for our lives.

That fight was all-consuming. Many of us were either fired from our jobs or forced into a long-term disability, as it was in my case. Others took jobs that they could work part time, some earning just enough money to pay their rent and put food on their tables. We put our lives on hold to work full time in activism, planning mass demonstrations, writing articles and opinion pieces for newspapers that would publish about AIDS, meeting with government officials, and doing all that we could to demand that our lives were valued and our deaths taken seriously.

Eventually our advocacy began making strides. We lobbied and marched until the National Institutes of Health, the Federal Drug Administration and the US Congress acted in getting special funding for AIDS research, bringing us into the era of HIV treatment in which we now live.

“Many of the activists who were fortunate to still be alive filled their prescriptions and promptly abandoned the activism that saved their lives.”

But after 1996 and the introduction of antiretroviral therapy, we witnessed a shift. Many of the activists who were fortunate to still be alive filled their prescriptions and promptly abandoned the activism that saved their lives. The sense of urgency among affluent white men in the HIV response dissipated.

“Soon the structural barriers that existed before AIDS shifted the HIV burden to communities of colour in North America and marginalized people across Europe, as well as people in low- and middle-income countries.”

Today’s HIV response is trying to pick up that slack left by yesterday’s activists, to extend healthcare access overall, and push issues of social justice and health equality. This is where I think the next generation will be essential.

“You should never quit fighting for human rights and social justice.”

The key lesson HIV activism has taught me is that you should never be afraid to speak truth to power; that a few people with right on their side and truth on their side can change the world. You should never quit fighting for human rights and social justice. And after you have made change happen, take a breath, look around, and make sure you didn’t leave anyone behind. That is the biggest lesson I’ve learned since starting as a young activist. I share that perspective with young activists now through intergenerational dialogue and mentorship.

My conversations with younger activist are usually meant to pay it back (and forward) so that the progress continues. But what I have realized is that many of us activists from the previous generation could benefit from their fresh insights. I also know that younger people do things differently and need to find their own way and their own voices. It’s important to be available and to offer advice, but to never tell them what to do. They know best how to shape the advocacy to effectively address the issues that impact their lives.

My hope is that young people continue to build on our legacy and find their own way of activism. A lot of things that ACT UP did in the past can’t be done everywhere, especially in countries with repressive governments. In a world where social media plays such an important role and where people are communicating in different ways, young people have numerous organizing tools at their fingertips. These creative and relevant new forms of engagement are what’s needed in today’s fight.

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The above text is a series of excerpts from a phone interview and has been edited for length.

Zhanna Abashina, 26 Kazakhstan

Zhanna Abashina (26) was born in the eastern Kazakhstan region, in the small village of Samarskoye. She began her work as an activist when she was 23 years old, and is now a social worker for Public Association that Supports People Living with HIV. Zhanna is also the Chairman of the Community of Counsellors for Counselling Patients Living with HIV, where she takes care of complaints related to discrimination in medical institutions. In addition, Zhanna works with Project Flagship as a peer navigator. This is her story…

When I was young, my parents divorced and I moved to Russia with my mother. Later, we began living with a man with alcohol addiction and soon she became addicted as well. They didn’t have jobs and we often had nothing to eat. My siblings and I were constantly subjected to humiliation and our mother’s boyfriend was beating us. In April 2001, I came home from school and found my mother dead, so our own father took us back to Kazakhstan. My childhood left a very big mark on my psyche. I closed myself up and became very aggressive and could not communicate with anyone. It was very difficult for me to understand why the world was so cruel. And I dreamed about growing up and helping people who were going through the same difficulties. I became interested in psychology so that I could better understand people.

But I did not get the chance to study. I had to leave home at the age of 14. I moved to the city of Ust-Kamenogorsk where I rented a small, cheap room and worked at a car wash, and later as a waitress in a bar. When I was 17, I met a man who was HIV positive, but he didn’t tell me. After a while, he disappeared and changed his phone number. In 2010, I found out that I was HIV positive. I did not know anything about HIV and didn’t know how to continue to live. I thought I was going to die soon.

I was very ill and had to be hospitalized. During my hospitalization, I met other people living with HIV for the first time. After my health improved, I started going to support meetings for people living with HIV, learning so much about the diagnosis from people who lived with it. Their bravery inspired me. I was able to accept my own status and decided to live openly with HIV.

“I understood why some people hid their status, but I wanted to set the example that my HIV diagnosis did not define me.”

Soon I became a volunteer so that I could help people navigate healthcare settings and treatment options and find support. I knew that the more we talked about HIV openly, the more people would understand that it’s nothing to fear, and hopefully we could make an impact on HIV stigma and discrimination.

“The fact is that HIV and HIV stigma are dual epidemics. And we will never end one without ending the other.”

The work I do to dispel myths and to fight against HIV stigma and discrimination in healthcare settings is what I’m most passionate about. The fact is that HIV and HIV stigma are dual epidemics. And we will never end one without ending the other. I see the effects of stigma and misinformation when counselling people who refuse treatment. Many of them are fearful of what their families or partners will say or do. But having lived through the difficulties in accepting an HIV diagnosis, I am uniquely suited to give them real-life advice and tools to understand HIV infection and the benefits of treatment as prevention.

These difficulties were common in the beginning, mostly because I was young and idealistic, wanting to see the immediate impact of my counselling and interventions. I lost a lot of sleep in the early days, beating myself up emotionally if I could not find a solution to help every person I encountered. Often, the hardest part of activism is being able to temper your expectations, to commit yourself to making long-term change that isn’t always easy to assess month to month, or even over a few years.

Another important lesson in activism is learning self-care. The tolerance and acceptance we give to our communities and clients must be shown to ourselves. For a while, I had problems with alcohol abuse and, thanks to supportive colleagues, I managed to get help for my addiction. Activists and those they advocate for can learn and grow from one another in unexpected ways. My work was a source of strength and inspiration when I was able to give birth to a healthy, HIV-negative baby in 2013. Everything I have achieved in my life so far, including my activism, has been both despite me living with HIV and because I am living with HIV.

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The above text is a series of excerpts from a phone interview and has been edited for length.

Erika Castellanos, 42 Belize

Erika Castellanos (42) is a transgender woman born in Belize. At very young age, she moved with her family to a small, conservative and extremely religious town, where she has very mixed memories of growing up. She remembers enjoying her childhood, but also faced stigma and discrimination. Erika was 18 years old when she became engaged in trans and HIV advocacy at the local, regional and now international level. She is the Director of Programmes at the Global Action for Trans Equality (GATE). This is Erika’s story...

I was eight years old when I told my parents that I didn’t want to wear male clothing anymore. Coming from a very conservative family and from such a small town, it was a scandal back in those days. My parents sought advice from the local priest and others on what to do. They decided to put me on medical treatment to “cure” me. I was taken to clinics and given male testosterone, changing my body in ways I didn’t want. High school years proved the most difficult and, at the age of 16, I immigrated to Mexico. My hope was to find a place where I could feel at peace and be accepted for who I am.

That journey continued when I was diagnosed with HIV in December 1995. At that time, it was difficult to make others understand that we were human beings and that we had a right to life. Antiretroviral therapy had just been discovered, but there were waiting lists for treatment and I remember going to funerals almost every day of the week. Families left their relatives in the hospices, never to be seen again.

“Fear drove people to turn their backs on HIV and AIDS, hoping it (and we) would disappear.”

To get their attention, we needed to be loud and bold. So we took to the streets and demanded our rights, chained ourselves to one another, used coffins, and painted ourselves in red to represent the blood of the dead and dying. We were fighting for survival.

My own story is a series of moments of survival and perseverance. The first was defying the odds doctors gave me when they said that I had only six months to live. The next was accepting the gift of life and deciding to seek out community. That’s when I found the first local network of persons living with HIV and began living openly with HIV. Soon, others followed, and together we felt that we no longer had to hide or fear what people thought about us.

But self-acceptance does not guarantee that the road will always be easy, in life or in activism. Early on in my career, government and health officials, who claimed to value community perspectives, would ask me to step out of high-level conversations.

“The assumption was that as a young transgender woman who had not studied at university and who openly talked about doing sex work, I would be “bored” by technical discussions.”

This not-so-subtle elitism (and sexism) drove me to study for hours before each meeting or presentation, so that I could challenge the assumption that I couldn’t understand. It was also one of the reasons why I eventually enrolled in university. Surviving migration, sex work and homelessness, all while being HIV positive and transgender, have made me strong and resilient in the work I do. And now, I serve as the Director of Programmes at GATE, where my experiences inform the breadth of my work doing people-centred advocacy.

Since then, I have had the opportunity to share my insights with young trans and HIV activists. I definitely recognize a gap between activism “then” and “now”, and I believe that it could be bridged through more open dialogue and mentorship between the generations. For so long, the old way of doing activism meant working in silos, fuelled by funding pressures that often exacerbates competitiveness among organizers. But the future and sustainability of our work lies in doing it together.

The next generation of activists is combining movements like sexual and reproductive health and rights, gender justice and communicable diseases, including HIV. This creates stronger networks to advocate for policy change, integrate healthcare services and share robust scientific knowledge. On a more intimate level though, it is especially important for seasoned activists like myself to provide guidance to young activists. We must tell our survivor stories from a place of compassion, not as a way to compare miseries and say how easy they have it. I am so thankful they have not been through the dark days of waitlists and endless funerals.

“We are one community within many others and therein lies our greatest strength to ending the HIV and stigma.”

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The above text is a series of excerpts from a phone interview and has been edited for length.

Gautam Yadav, 28 India

Gautam Yadav (28) was born in New Delhi, India. As an adolescent from a middle-class family, he was very confused about his sexuality and feels today that if he received more information regarding sexuality, gender, HIV and AIDS, he would likely not be HIV positive. Gautam became an activist at the age of 19, and is now the Programme Officer at the Humsafar Trust, India’s oldest LGBTQ organization. He is also the board member of the UNAIDS Youth Advisory Forum representing the Asia-Pacific region, as well as a board member of Youth Lead Bangkok. This is Gautam’s story…

I never wanted to become an activist. Since I was a teenager, I thought my path would lead to the performing arts, doing musical theatre. But at age 18, I got tested for HIV and it changed my life forever: it was my first and last HIV test. Learning that I was HIV positive was devastating and it sent me into a deep depression.

It took me a couple of years to find my way out of that despair and get back on my feet. That was when I decided to devote myself to HIV activism and LGBTQ advocacy. I realized that I didn’t want to see more people become HIV positive at age 18. This work was and still is desperately needed in India, especially for young people.

I wish I could say that biomedical achievements make me hopeful about a world without HIV. But I still see people dying of AIDS. What’s more, through my work, I also meet young people living with HIV and curable diseases like tuberculosis and even hepatitis C. To me, this means that the approaches to services and care are not working.

A recent case in point involved a transgender person in her 20s who asked me for help. She was living with HIV and also suffering from tuberculosis. Through my connection to a PLHIV support group, I was able to refer her to the hospital for a proper check-up and medication. She recovered in a few weeks. One day, I made a follow-up call to her to ask about her health. Her landlady answered the phone and told me that she had passed away just days before.

“TB and HIV did not kill my friend. She died at the hands of a neglectful health system and a society entrenched in HIV stigma and discrimination.”

There is a long way to go before the advances benefit everyone equally. Stigma continues to puts lives at risk. In India, there are still laws criminalizing gay sex. In 2009, activists in India achieved a success when Section 377 of the Indian penal code, which criminalized gay sex, was ruled unconstitutional. But four years later, our hard-won freedom and privacy was overturned when the law was reinstated.

Although people in the West regard this 150-year-old law as a vestige of a bygone colonial age, it has contemporary consequences. Men who have sex with men are threatened and blackmailed. Similar to laws that criminalize HIV in Canada and the US, it impedes HIV prevention efforts. Why would I seek out HIV testing or treatment if my doctor is obliged to see my sexual practices as criminal?

The activism needed in India and across low- and middle-income countries is about universalizing healthcare and protecting the reproductive rights of women and girls, affirming LGBTQ people, reducing harm for drug users, and decriminalizing sex workers and people who inject drugs. Young people across Asia and the Pacific understand these challenges and can face them head on.

“We have come so far. Yet there is a lot to be done by adolescents and young key populations.”

Young people need to be involved in the HIV response, from the top of the hierarchy to implementing policy decisions. More established activists from the old guard must help us ascend to leadership within civil society so that new frameworks we present can broaden the approach to human rights. They are the ground on which we build.

“Young people know their problems and have solutions. Our voices should be heard and be the starting point. ”

Across the globe, young activists understand that the success or failure of the HIV response is directly linked to social justice in every form; women must be given access to education and paid an equal wage; war and the humanitarian crisis must end to prevent displacement and forced migration; climate change can no longer be denied; those engaged in sex work should be protected; and drug users and people living with HIV should not be criminalized for their health statuses. These are the challenges of the 21st century and beyond, and youth activism is the key to tackling them.

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The above text is a series of excerpts from a phone interview and has been edited for length.

Kate Thomson, 57 United Kingdom

Kate Thomson (57) was born in Sussex, UK. She left home when she was 15 years old and, as a teenager, she started using drugs. During this time, Kate lived in several countries, including the UK, the Netherlands, India and Morocco. In her mid-20s, she stopped using drugs and got accepted to university in London to study sociology and communication studies. At around the same time, she tested positive for HIV. Kate helped establish Positively Women, the first organization of women living with HIV in the UK and one of the first globally. She began her work in activism at age 26, and is currently the Head of the Community, Rights and Gender department at the Global Fund to Fight AIDS, Tuberculosis and Malaria. This is Kate’s story…

“But I was what you would call a 'reluctant activist', settling into activism as a way to channel my anger.”

I was diagnosed with HIV in January 1987 – I was 26 years old and the first woman to receive a positive diagnosis in the hospital where I was tested. At that point, it took me two months to even make contact with another woman living with HIV. There was almost no information and no support out there, so those of us who were being diagnosed had to do things for ourselves. We pushed to receive basic health and hospice care, educated our providers, and took action against political and corporate interests that denied us rights that are now viewed as the bare minimum. But I was what you would call a “reluctant activist”, settling into activism as a way to channel my anger, push for change and make sense of the chaos my life was thrown into.

It was the lack of women-centred resources and the need to connect with others that led to a group of us forming an organization for women living with HIV. We worked very closely with other community networks of people living with HIV, which at the time were exclusively male, to advocate for rights, research and eventually for treatment. What bound us was not only our diagnosis, but also seeing our friends and our colleagues dying every week. We spent years trying to manage overwhelming grief that lasted up until antiretroviral treatments were introduced.

Looking back, the advent of effective treatment was a defining moment for me. The announcement at the International AIDS Conference in Vancouver in 1996 became a glimmer of hope for a weary group of HIV activists. I remember thinking, “Does this mean that I’m going to live?” And I did.

I was put on treatment, which was not easy because of the many side-effects, but my health, and that of many others, drastically improved. This was a blessing for many of us in Western Europe, North America and Australia. But while we stopped dying, our friends and colleagues living in the global South, who had worked in equal measure to see this milestone achieved, didn’t have the same access to treatment.

“This shift created a huge gap among the global family of activists living with HIV and catalysed a reorientation in our activism towards a major focus on treatment for all.”

The issue of global disparities in access is still a priority of our collective work and activism. There have been moments in my own life that I think made a difference. Working in UNAIDS back in 2005, we created a group called UN+ and managed to set up a meeting with the incoming United Nations Secretary-General, Ban Ki-moon, shortly after he started. Ten of us from UN+ travelled to New York for a 30-minute meeting, setting the agenda in advance.

We used the time well, briefing him on a whole range of issues, from stigma and discrimination to intellectual property, treatment for HIV and hepatitis C co-infection, and LGBTI rights-related issues both within and outside the UN.

At the end of the meeting, the Secretary-General put out a press release that he had had many meetings during the course of his career, with heads of states and kings and queens, but this was one of the most important. It was a particularly proud moment, being able to use our activism to influence the political agenda.

Older activists like myself, who are lucky enough to have survived so long, see the legacy of our activism continuing, but in very different ways. Treatment access has expanded in places like sub-Saharan Africa and Asia. Of course, we have not reached universal access and there’s still a lot of work that needs to be done to get there. But today’s generation of HIV activists are a much larger and more connected cohort.

Technology has created greater access for young people who want to engage in HIV activism to spark dialogue and to be heard. A lot of activism is happening on social media. It’s a far cry from the days when snail mail, television, radio and landline telephones, for those who had them, were the only ways to exchange ideas and communications.

Despite the connectedness of the digital age, one thing that I have observed and worry about is the lack of diverse representation in youth activism.

In some countries, the young people engaging in activism tend to be the most privileged, and do not necessarily come from that country’s most impacted communities. These include young people who use drugs, young sex workers, adolescent girls out of school, and young gay and trans communities. I would like to see more efforts on the part of young people to ensure gender inclusiveness and economic justice in their activism.

“My generation fought hard for seats at the table, but now it’s time for more seats and even a bigger, more inclusive and more influential table.”

Youth activism is an immense power that can continue to change the world. Young activists must continue to build an HIV movement that is inclusive, collaborative and responsive to the needs of those most marginalized among us while at the same time connecting with other communities outside of HIV who face oppression, human rights violations and lack of access to healthcare. Young peoples’ ability to be innovative and to use new technology to not only speak about their experiences, but also to connect with and listen to diverse perspectives on the ground, fills me with much hope for the future. My generation fought hard for seats at the table, but now it’s time for more seats and even a bigger, more inclusive and more influential table that spans ever more diverse communities as we kick down every wall that stands in the way of the realization of human rights for all, no matter who we are or where we live.

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The above text is a series of excerpts from a phone interview and has been edited for length.

Grace Ngulube, 23 Malawi

Grace Ngulube (23) was born in Malawi. She is a Youth Champion for the Peer Power Project supported by the IAS and also a peer supporter/project coordinator for the REACH and Peers to Zero Projects for WeCare Youth Organization. She began her involvement in activism at age 16, and is currently studying social work and HIV management while working as a peer supporter at Zalewa clinic in Neno, Malawi. This is her story…

When I was 10 years old, my primary school held an HIV campaign. It is an odd thing to many people outside of Africa, but here it’s commonplace. I decided to get tested, but when results were supposed to be received, the school counsellor never gave mine. Instead, he told me to return to school with my parents. I brought my aunt with me because I already had lost my mother. Even though I was young, I somehow knew something was wrong. The truth was that I was born with HIV, and unbeknownst to me at the time, my entire family was living with the virus also. My mother had died of AIDS because she did not receive treatment. Four years later, my aunt revealed all of this truth to me, she had been keeping it secret because she was afraid that I would commit suicide.

And it was not an easy moment. I was heartbroken. I started antiretroviral medication but, being so young, it took my three years before I was able to regularly adhere. Accepting that I was living with HIV made me feel isolated from my friends and classmates and from my childhood in general. Eventually, when I was 16, I was introduced to other young people living with HIV and it changed my life.

“Young people who were also born with HIV were thriving beyond diagnosis. And I wanted to do the same.”

Those interactions with community drove me to volunteer and provide support to teenagers living with HIV. I know from first-hand experience that young people are afraid to talk about the challenges they face, including adherence. Peer support is therefore key. For this reason, I share my story as a reminder that we are not alone and to push for greater access to services.

Many health services do not meet the needs of young people. They are often inaccessible or are not comprehensive on sexual and reproductive health and HIV, which is of utmost importance to youth. The consequences of this failure can forever change the course of young people’s lives before they have even begun, and include early pregnancies, child marriage, increased HIV incidence and low adherence to treatment. This made me think about how I can help make sure that young people are aware and included in programming of these issues.

“To bring youth-friendly health services closer to young people – services that also involve them directly – many barriers must be addressed.”

As a champion for youth-friendly health services, I work with and encourage young people to participate in the programmes.

This involves setting up and supporting new and existing peer-led groups in public health facilities and schools. Our goal is to engage young people through awareness campaigns that provide information on where to access youth-friendly health services. Through direct action, our voices and needs are heard, and we can effect lasting change.

The success of the work hinges on what also makes it challenging: relatively weak participation by young people in programmes for young people. We have the ability to empower young people by giving them leading roles in advocacy and through mentorship from seasoned champions in the HIV response. HIV activism has spurred me to be strong and inspire other young people living with HIV to live positively, to take a leading role in the fight against the epidemic.

Around 40% of the population in my home country is under 15 years of age and Africa has the youngest population in the world. If ever there was a time and a place to give youth the tools to lead, it is here and now. As a young activist, I believe that it is high time that young people come out and speak out about issues, rather than waiting for others to advance their issues on their behalf. Although role models and mentors are key to young HIV activists’ growth and evolution, it’s time to take our lives and our leadership in our own hands. Let us end this epidemic, once and for all.

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The above text is a series of excerpts from phone interviews and has been edited for length.