Following on from our issue looking at young people, in October, guest writer Bakita Kasadha talks to the organisers and participants in the UK’s summer camp for teenagers with HIV.
The Children’s HIV Association (CHIVA) arranged its first large-scale summer camp for young people living with HIV in August. Seventy-nine 13- to 17-year-olds were given the opportunity to meet others living with HIV and learn about the virus. The participants travelled from across the UK to the venue, a private school in Sussex.
The aim of the camp was to tackle the isolation many young people living with HIV face, by bringing a big group of them together so they could meet lots of others facing the same issues.
Magda Conway, projects manager at CHIVA, was camp manager. She explains that smaller-scale CHIVA residentials of up to 20 young people had inspired her to set up the summer camp.
With around 500 teenagers living with HIV in the UK, CHIVA felt it was important to have a large-scale residential event, says Magda, because “If you feel like you are the only teenager in England living with HIV, what is more powerful than being in a room with 80 others?”
The camp was made possible due to the time and efforts of volunteers. This included eight camp leaders, who were all HIV-positive, and around 30 key workers, both positive and negative. These 30 were chosen from about 100 applicants. The recruitment process was heavily reliant on the general public. Their job was to support the young people on camp.
Jill Hellings, a volunteer at the camp, says: “Peer support is one of the most, if not the most, important type of service that young people living with HIV can access.”
Amanda Ely, whose role was to recruit and organise the key workers, recognised the risks involved in selecting those who may not have much experience for such an important role. She describes the make-up of the group as “fairly balanced: it was important that we had a mixed bag,” though they did not have as many volunteers from black and minority ethnic groups as she would have liked.
Amanda described them as “enthusiastic and motivated”. Magda commented, “For all the volunteers the message is a very big ‘thank you’.”
Ten adults at the camp were open about their HIV-positive status. Organisers felt it was important to have adults there with a range of backgrounds and experience. Although Amanda recognised there are parallels in people’s experiences, as organisers, CHIVA did not wish to “prescribe a kind of model of what it’s like being an adult living with HIV”.
HIV-experienced people were essential, she says, but it was beneficial that some volunteers were facing the issue of HIV for the first time. Their encounter with young people with the virus not only enabled them to take their learning and understanding into the wider community but to increase others’ understanding not only of what it’s like to live with HIV but also what it’s like to encounter it.
Madeline, a camp leader, noted that volunteers “were excited to be there, but were in different places with how they related to the HIV world” and was struck by how many had “incorrect or insufficient knowledge” of HIV. Max, another camp leader, says most key workers were “fantastic. But for some, their engagement was not as much as it should be – disappointing, given how special the environment was.”
Jill, a volunteer who works in the HIV sector, advises that those considering volunteering for a similar residential in the future should read up about HIV on reputable websites before they go. “Don't think that you need to try to answer questions that you really don’t know the answers to. Use the skills of the other volunteers around you.”
Amanda says that next year they plan to have a structure to help the more HIV-experienced volunteers to guide those with less information.
One issue that caused a lot of debate was confidentiality. The camp was organised by CHIVA but participants, volunteers and camp leaders alike were encouraged to refer to it under a different name and staff from the venue were not made aware of the status of participants.
These confidentiality safeguards were designed to ensure safety, but people worried whether not being able to mention CHIVA sent contradictory messages. Would participants feel comfortable with their status if they were not able to hint at it publicly?
Amanda commented that this was a “solution to a problem we really grappled with”. All organisers wanted the young people to enter a space free from HIV prejudice to enable them to feel more comfortable with their peers. Amanda says that “it’s not for us to decide to disclose people’s status” and that it was important to respect the rights of the participants.
“HIV is not all that they are. HIV is not everything,” she says.
Magda says: “It’s difficult to not over-protect this group of young people. Revealing their diagnosis could have major negative impacts on their lives, so we strived to do everything we could for this not to happen.”
Next year, though, she aims to use different facilities and offer the venue’s staff training on HIV “so we can have a truly open experience.”
Finding a location had proven difficult. Four schools cancelled their bookings when the CHIVA organisers tried to negotiate the level of confidentiality that they wanted. “Some simply said no to the camp once they found out that it was for people with HIV. Others said they wanted us there, but only if every single member of staff was told the young people had HIV.
“It was pretty soul-destroying. But it affirms why I do my job.”
Many educational and creative workshops took place over the four days. These covered a range of subjects from explaining HIV-positive people’s legal rights to magazine making.
One participant, however, commented that she wanted more activities and fewer HIV-focused workshops: “I knew why I was there,” she explains. But the need for workshops and education was affirmed when it was discovered that a participant, living in London, was not aware that there were support groups in her city.
“It was a short four days,” says Madeline. “I can only hope for another camp like this. All the camp leaders, volunteers and participants took away a truly amazing experience.”
Angela, a camp leader, says: “Participants were free to be who they were - without feeling worried or wary about taking their medication or talking about their sexual health and inner feelings.”
She adds: “After the evening events it would be quite a struggle to get the young people to go to bed as they were enjoying each other’s company.” Over the three nights volunteers were reminded that the young people were just like any other teenagers: they wanted to stay up past their curfew, formed summer romances and occasionally bickered amongst themselves and challenged the volunteers.
The last hours of the summer camp involved a closing ceremony. Everyone had the opportunity to express what they had learned and what they would take away.
Despite disagreements between participants and some differences in opinions, all felt that the camp was successful. One participant simply said, “I don’t want to go”.
The benefits of this camp go beyond those four days. Not only were young people living with HIV able to form friendships and discover that they were not alone, but volunteers were able to educate themselves and challenge prejudices. Some were so moved by their four days that they felt compelled to question their lives.
Volunteer James Johnson said that the camp prompted massive change in his own life: “Post camp, I left my job, moved to London, and am starting work with an HIV organisation.”
JD, a camp leader and Communications Officer of the CHIVA youth committee, says: “I realised I could raise HIV awareness without having to disclose my status”. The summer camp empowered her to run a world AIDS awareness week at her university.
Morpheus, a participant and member of the CHIVA youth committee, says he’d like to see the camps happen every year. “It was great that it was bigger than before; you could clearly see you weren’t alone. We could identify with one another.” He is a little sad that he no longer felt like a full participant: “People were looking up to me.”
Magda’s message to the participants? “Take this with you and think about it when things are hard, as it will give you strength. And keep in touch with each other – these friends will see you through!”
Find out more about the summer camp and applying to be a volunteer at: www.chiva.org.uk/summercamp