Facing discrimination and ignorance, Hongkongers living with HIV want better education to debunk myths on disease
- HIV-positive people in the city say they have encountered hostility in hospitals and in society
- Activists urge government to give more support to education programmes and help destigmatise those with the disease
Dressed in black and his face covered by a bulky helmet, HIV-positive Duncan Lam Chun-chung opened up about his struggles on television last year.
At one point, the 39-year-old, who volunteered to appear on a talk show hosted by Canto-pop singer Eman Lam Yee-man, suddenly announced through a voice changer: “I can take off the helmet.”
And he did just that, with a faint smile, though he said he had been preparing himself mentally for that moment for ages. “I hoped by revealing my identity to the public, no one would dare smother our voices any more,” Lam recalls.
Before the official coming-out, Lam had lived a more secluded life, and had at one point thought about killing himself. But later, he decided to devote his time to combat the stigmatisation of those with HIV – which he has now been doing for a decade. The activist is vocal about discrimination in hospitals, elderly care centres and workplaces, as well as portrayals of the disease in the media.
After working for a local NGO for eight years, Lam established a new concern group Positive Outlook Community in 2016, which has served more than 100 patients. Supported by a 40-strong team of HIV-positive people, the organisation provides counselling services for newly diagnosed patients and their partners, and helps with filing complaints about discrimination.
City reports 146 HIV infections, including two newborns, in first quarter of 2019
Viewed as one of the few leading figures in the HIV-positive community, Lam is one of about 10,000 HIV-infected people in the city, a figure which more than doubled over the past decade. As of the first quarter of this year, there have been 9,861 HIV infections and 2,018 cases of Aids in Hong Kong since 1984, according to the latest announcement by the Centre for Health Protection on June 18. Although there is no cure for HIV, the chronic disease can be treated, according to Aids Concern, a local medical charity founded in 1990.
However, fear and misconceptions about Aids have increased and spread in the city, according to Lam.
I think the situation has even gone backwards, as stakeholders, including NGOs and the government, pay little attention to the discrimination we face
“I think the situation has even gone backwards, as stakeholders, including NGOs and the government, pay little attention to the discrimination we face,” he says, adding that insufficient public education has exacerbated rumours spread online, some of them initiated by homophobic groups.
“I chose to ‘come out’ because as a patient I don’t feel represented. I think it is the only way to take back my voice to tell people what has happened to us,” he explains.
Lam’s experience of discrimination dates back to the day he was diagnosed in 2007, several months after having unprotected sex with a stranger. Then aged 27, a feverish Lam was sent from his sister’s flat to hospital by ambulance; on the way there a wary paramedic urged him to put on a mask.
“When the doctor confirmed the diagnosis, I simply asked: how and when would I die?” Lam recalls. “The only thing I knew about Aids was rotting skin and death.”
Two weeks after being admitted to hospital, a consultation with a specialist nurse was arranged for Lam. This meeting, however, has remained his deepest nightmare.
“She kept asking how many sexual partners I’d had, suspecting that I was lying to her,” Lam says. “It dawned on me that being HIV-positive meant you were promiscuous, vicious and dishonest. And that came from a nurse.”
It dawned on me that being HIV-positive meant you were promiscuous, vicious and dishonest
“The minute I got back to my room, I pulled out the intubation tube. I wanted to kill myself. I thought, how am I supposed to live on earth even if I survive the disease?”
Ken, another HIV-infected patient, also remembers experiencing hostility in general hospitals. He was told he had only 10 years left to live when he was diagnosed in 2011, prompting him to refuse treatment for three years, “as I was doomed to die anyway,” he says.
Ken says that while patients do not necessarily need to reveal their disease to others, it is difficult to hide from medical professionals even when the treatment does not concern Aids.
“Such subtle discrimination makes me feel scared of myself, though I know I won’t infect others easily,” he adds. “Like when I hold a friend’s baby I can’t help but think: what if I pass it on to the child?”
Last year, a survey about self-stigma of HIV-positive people showed that about four in 10 patients constantly suffered from sleep problems and negative thoughts, while nearly six out of 10 said their lives were “tainted” by the disease.
Lee Kai-lung, a programme manager, who organised the survey at Aids Concern, believes that today there are more people concerned about Aids, though “both the supportive and discriminatory camps have expanded”.
“People still think of ‘being dirty’ and a high death rate when it comes to Aids patients. This kind of stereotype in the media hasn’t changed a bit for decades,” he explains.
Lee says the key solution lies in school education concerning destigmatisation, safe sex and sexual identity, urging the government to show more support for it.
Meanwhile, Lam accuses some concern groups of not daring to stress the problem of discrimination lest their funds from the government get cut off. His Positive Outlook Community is privately funded, including Lam’s own investment of HK$40,000.
HIV and Aids still largely taboo subject in Hong Kong and much of East Asia
Back in 2007, a newly diagnosed Lam was also coming out of a failed relationship, being cut off from his family and suffering severe depression. “HIV infection has, in a way, reunited me and my mother, and given me a goal in life,” he says.
“In the end, I chose to save myself out of anger. I couldn’t just die while knowing that people looked down on me,” he says.
Lam intends to fly to the Netherlands to marry his boyfriend there, offering an escape from a city he deems to be “without hope”.
“I still can’t let go of my fellow people living with HIV. With so many care centres refusing to serve people like us, what are we going to do? Will there be anyone else standing up for us?”
