The human face of HIV
The Positive Speakers' Bureau (PSB), is among the most important work of PLWHA (NSW) does, and it is still as relevant today as it was 13 years ago. With the aim of encouraging understanding, dispelling myths about people with HIV/AIDS and countering ignorance, fear and discrimination wherever they exist, the Bureau has been an active voice for people living with HIV/AIDS in New South Wales since 1994.
Today, PSB provides a diverse range of trained speakers to schools and universities, professional and community groups, with the opportunity to hear first hand the experiences of people living with HIV/AIDS. This is done by way of real life presentations.
Each of the speakers has their own personal approach when engaging with different audiences. Their stories may be personal, but together, they represent the reality of living with the virus: from diagnosis to treatments, from stigma to disclosure.
Here is Luke’s story, as he told a group of 15 people being trained as Ankali volunteers at the Albion Street Centre two months ago:
Early memories
Luke is 29 years old and has been living with HIV for twenty five years. He has been involved with the Bureau for the past eleven years. A person with the bleeding disorder haemophilia, he was infected with HIV and Hepatitis C as a young child by blood products used to treat his haemophilia. In the earlier days of the epidemic knowledge about HIV was very limited and confusing. At the time, his parents were advised not to disclose his status. They were unguided and with little help they had to quickly learn as much as they could about the infection in order to better care for their child.
His school memories of living with HIV are a combination of having to understand and cope with the impact of HIV and trying to conceal from his school mates the reasons why he was taking medication. This was due to the stigma associated with having HIV at that time. Because he was a person with haemophilia, he often used this as an excuse for his being, at times, ill.
As he grew older and understood more and more about his infection, he did not accept that people could discriminate against him because of that. He became vocal about his condition and started confronting prejudices straight on, and this was how he became a young AIDS educator. He remembers that some of the discrimination towards him had to do with the fact that he was perceived to be gay. This was because of the association between HIV and homosexuality.
During his later teenage years, he became very sick, and like any teenager, he rebelled at times against the fact that he had to take his daily dosages of antiretrovirals. He understood however that the newly discovered anti-HIV medications were a necessary evil to keep him healthy, and that he had to continue to take them for the rest of his life.
Coming of age with HIV
Growing up with HIV represented yet another challenge: he was at an age when young people become sexually active. But how could he go through this experience when he was living with a virus that was also sexually transmitted? What if he infected his sexual partners? What if they rejected him because of his HIV status?
He learnt about safe sex and learnt that he would have to disclose his status to his prospective partner, but that did not take away the fear of infecting her. He found that his girlfriend was quite accepting and loved him despite his illness. Later this year Luke will marry his girlfriend of eight years.
Luke underwent a 12 month course of treatment for Hepatitis C in 2004 and was declared Hep C free in late 2005. He is proud of his involvement with the Positive Speakers Bureau, and with his continued role as an HIV Educator. In his own words, this is how he described his experience as one of our speakers 10 years ago:
“I was satisfied and even emotionally high due to their response. It’s funny, to me my story is only average, but to them it was amazing.” Luke Chipperfield