‘The stigma is probably more damaging than the disease’: Leeds Youth Stop Aids HIV+ Speaker Tour

LUU’s Youth Stop AIDs society presented their long-awaited HIV+ speaker tour on Wednesday 14 February as part of their #itaintover campaign, which seeks to keep the HIV epidemic on the government’s agenda. The UK youth-led movement are lobbying for a world without AIDs by 2030. Working towards this, three incredible speakers shared their personal experiences of HIV to inspire and inform. While the circumstances of the speakers vary, they are united in their resilience, determination, and commitment to stop AIDs. By sharing their stories,the speakers hope to create a more open and positive dialogue, fighting stigma while promoting change.

The talk began with Channan’s story, who at 18, is already a passionate HIV activist and entrepreneur. Born with HIV to parents who were active drug users, she grew up in the care system. Channan felt the stigma attached to HIV early in life, bullied by school pupils and at home. This resulted in a total loss of confidence but at secondary school, she began to feel more comfortable and accepted. Yet as her confidence grew, Channan’s immune system began to break down, leaving her susceptible to pneumonia and shingles and dependent on trialling various drugs. Regardless, she decided she wanted to make a difference.

After disclosing as HIV+ at 13, Channan sought to educate people. Since then she has created websites, talked at the House of Lords and started a YouTube channel to show people that they too could live a full and normal life with HIV. While she admits that she still experiences some stigma, for instance being blocked on social media by boys who found out about her being HIV+, she remains positive: ‘I have no limits and can change people’s perception’. It is still common, she adds, for people to avoid taking their medication because it reminds them of the illness, but Channan’s Youtube channel has a different message: ‘Be happy, be incredible and be victorious #HIV.’

The second speaker was Lewis, 33, who grew up in a rural area where homophobia was commonplace. When he came out at 16 his mother told him to leave home, warning him about the risks of being a gay man and contracting HIV. While at university, Lewis started a relationship but never really discussed HIV. One day, he went for a regular check up at the STI clinic, where he was told he was HIV+. ‘All I could think was “Fuck.” Literally my world just stopped. I went through the ‘who, what, where, how?’ and back to the conversation I’d had with my mother in the ‘80s.’ After telling his partner, whose test also came back positive, they sat outside the clinic and cried for an hour. Lewis and his partner promised not to blame each other but to get through it together. Testament to the lack of education many people had, when Lewis told his best friend she was terrified he was going to die and started vomiting on the street. His mother was similarly distressed. Describing the time as ‘a bit of chaos,’ a turning point came following a conversation with his step-dad who asked: ‘Are you going to die?’. To which Lewis answered, ‘eventually, yes. But not from HIV.’ Instead of being met by fear or stigma, his step-dad’s simple reply finally normalised things for Lewis. ‘Okay,’ he said.

Nonetheless, the news took its toll on his sex life and self-esteem as disclosing led to being labelled ‘dirty,’ ‘a walking disease’ – or being asked ‘are you clean?’ by potential partners. Lewis stressed that ‘the stigma is probably more damaging than the disease. Stigma kills.’ Determined to stop people dying because of the stigma attached to HIV treatment, Lewis became an activist in South Africa and set up Proudly Positive to create a more open dialogue in a national and, particularly, international context. In line with this mantra, Lewis refuses to be a bystander: ‘I am one of the lucky ones. I have access to treatment and a fantastic support network. This means I can continue to fight against HIV and decreases in government funding. Our time is now.’

The final speech came from Kennedy, 24, a Kenyan who contracted HIV after being forced to become a sex worker at the age of 16. After telling his mother he was homosexual, Kennedy was rejected by his family and decided to run away. Through sex work, he met friends who became like family. Still, the work came with its dangers – beatings and sexual abuse were not uncommon. The discrimination he faced from family and clients was also institutionalised. There was no protection from police; in fact, quite the opposite. Likewise, he had no access to public health services due to LGBT discrimination, so painful sexual infections were left untreated. At 18, a persistent cough took Kennedy to the hospital where he found out he had TB, a disease people with HIV were more prone to. Subsequently, he was tested for HIV and the results were positive. Sexual education was never discussed, so this came as a massive shock to Kennedy who had grown up being told that anal sex was not risky. Feeling helpless, he attempted suicide: ‘I didn’t want to die with people watching.’

Thankfully things changed for Kennedy when his friend Martin, also in sex work, disclosed to him that he was HIV+. Martin was good looking, healthy and had done well for himself, and this gave Kennedy hope. They went to the doctor’s together and, though still facing stigma, within three months he started to feel healthy again. Kennedy laughed: ‘I brought that sexy back. My calves were protruding’. The simple support he found in Martin changed and potentially saved Kennedy’s life, so he decided to start an organisation to help others. Hapa-Kenya works to empower the HIV+, MSM/MSW and Trans community in Mombasa, and of the 108 people involved openly living with HIV, 52 are now undetectable. This means the virus levels in the body cannot be detected by a test and massively reduces the risk of transmission. Kennedy continues to campaign for support for such initiatives.

In the following Q&A, The Gryphon asked the speakers what advice they would give to people who are HIV+. Lewis said:

It gets better. Reach out – there are some amazing services and support available like the Terrence Higgins Trust.’ For others, he urged: ‘Just get tested. Start having more open and honest discourse. Always wear a condom.’ And for those who want to help, Lewis suggests: ‘Act local. Think global.”

Clearly sexual education, both nationally and internationally, desperately needs updating. Putting pressure on governments to make heteronormative syllabuses more inclusive is an important part of this. But equally, small steps like staying informed, starting conversations and challenging stigma are accessible yet important actions everyone can take to help end AIDs by 2030.

Sam Anderson, the president of the society, adds:

“It has been so amazing to see people come and hear the inspiring stories of activists living with HIV from the UK and the Global South in their fight for change in the response to the epidemic and an end to HIV stigma.

This was part of the Youth Stop AIDS #itaintover campaign, trying to put pressure on Alistair Burt, Minister of State for DFID, to put their eye back on the ball and make solid political and financial commitments to tackling the epidemic. In particular committing to £10 million to the vital Robert Carr Network Fund working with at-risk groups.

It has been so amazing that after the talk people were so inspired and motivated to take action and join this youth-led national movement. Our Leeds group, Leeds Youth Stop AIDS is having our annual AGM on Thursday 1st March at 5pm in LUU Room 6 and we are electing a new committee so it’s a great opportunity to join the team!”



Georgina Cresswell

[Image: Georgina Cresswell, youthstopaids.org ]