WE DON'T know it, but men and women with HIV live anonymously among us.
They look normal, perhaps are active in sports, raise children. They may be anyone: a colleague or friend - even the grandmother waiting for the lift, really. But they are walking walls of silence because Singapore society has not yet learned to live with them.
The stigma of HIV is explored poignantly in 10 photo essays created by patients, volunteers and caregivers. Hosted by the non-profit organisation Action for Aids, the photo exhibition will run till Nov 29 at VivoCity.
The silence of patients, very sadly, feeds public ignorance and fear. This fear invariably feeds more silence, with patients pulling an ever tighter shroud of secrecy around their lives for protection. Should they speak up then?
Medical social worker Ho Lai Peng from Tan Tock Seng Hospital says: “The price is too high for them to pay.”
Photo source: Chalen Tan
Until society or culture shifts to accommodate the marginalised sufferer, it is may be too painful to speak up. Even with cancer - a common illness - some patients are initially silent about their condition. Family members of cancer patients, fearing contamination, have been known to keep separate utensils for use at home.
Both cancer and HIV/Aids are chronic life-threatening conditions. While there is also deep anxiety about cancer, the fear factor is conquered partly because of the hefty resources and human sympathy focused on cancer here and globally.
In Singapore, only two people have openly declared their HIV status. The late Paddy Chew went public in 1998. Mr Andy Low broke his silence this year.
Ms Ho, who has worked with patients for 14 years, has seen many of her patients live long and fruitful lives. The pity is that these good lives are covered up. She adds: “The discrimination is very painful because they have to continually lie and cover up.”
Some feel guilty that they cannot be honest about their condition with a good employer, she says.
Some forms of discrimination are obvious. People with Aids may lose their jobs, and no specific legislation redresses this discrimination.
Subtle discrimination exists as well - even at home. A patient’s family may have accepted his or her condition. Then when an argument breaks out, a family member may lash out that the patient deserves his misery.
Volunteers from Action for Aids chime in with similar stories and views. Says Mr Dan Tam, who visits HIV patients in the Communicable Disease Centre: “They are like anyone else who is warded in hospital, just that they are relatively more lonely and isolated. I feel upset when someone tells me that people with Aids deserve the worst. HIV/Aids could happen to anyone.'
Photo source: Dan Tam
Photographer Tan Ngiap Heng, who helped seed the idea for the Aids photo show at VivoCity, says: “I hope that people who see the images will also see the humanity of the people living with HIV and be more accepting of these people.”
Apart from stigma, photos in the exhibition also highlight the vulnerability of HIV-positive mums and their young children. Other photos focus on the journeys some patients make to buy cheaper generic medicine in Thailand. And several pictures are infused with fun, hope and a sense of normalcy.
Meanwhile, the silence is still immense after years of public education and outreach. It will take all players - the state, civil society and patients themselves - to end the silence, the secrets and the unjustifiable stigma.
An open country like Singapore can surely focus new compassion and purpose on an illness that has been with us a long time.
Just talking about Aids is very powerful - for Singapore society as much as for people with Aids.
Photo source: Norman A.