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"Shunned by society"
The
Star (www.thestar.com.my)
(19/03/07)
Decades of HIV/AIDS education programmes seem to have achieved little as
people living with HIV still face discrimination and isolation.
KUMAR (not his real name), 36, fainted at his workplace one day. He was
admitted to hospital and was diagnosed as HIV-positive.
When he returned to work, his employer hauled him to his office and wrote
him two cheques – for his last pay and as compensation – and told him to
resign.
“I was shocked. I was not sure who informed my boss. When I told him that
the doctor said my condition was under control and I could still work, he
replied that my colleagues were not comfortable with my condition,” Kumar
said.
He resigned from the credit card company in 2000 and did not get another job
until 2004, because he chose to declare in employment application forms that
he was HIV-positive.
“I felt the need to be honest but no one would employ me,” said Kumar, who
now works for an NGO that promotes HIV/AIDS prevention efforts.
Kumar was one of the respondents in a study on the Impact of HIV/AIDS on
People Living with HIV (PLHIV), their Families and Community in Malaysia.
This is a United Nations Country Team on HIV/AIDS Malaysia project funded by
UNAIDS.
According to the study, less than a third of the 94 PLHIV surveyed said they
were employed. Many had resigned due to discrimination or had been asked to
leave their jobs, as a result of having HIV-related illnesses.
More than half of the respondents reported that they had experienced stigma;
19.4% said they had not, while 22% said they did not experience stigma
because nobody knew their status.
The study showed that despite decades of HIV/AIDS education programmes,
misperceptions about the disease were still prevalent, and hence, social
stigma, said principal investigator Dr Siti Norazah Zulkifli.
“There is a need to re-examine the approach used in HIV/AIDS education,” Dr
Siti Norazah said at a recent seminar titled “Listen to their Voices, Act on
the Evidence!”
Thirty-six members of the community also took part in the qualitative study,
carried out from March to November last year. It involved seven PLHIV Focus
Group Discussions with participants recruited through NGOs and hospitals:
men infected through drug use; women infected by their partners/spouses; men
who had sex with men; heterosexual men; women sex workers; transgenders and
refugees.
Discussions among the PLHIV focussed on health, and psychosocial and
economic impact, and were conducted in Kuala Lumpur, Selangor, Kota Baru,
Kuching and Kota Kinabalu.
Focus Group Discussions were conducted among four communities in rural
Penang and urban Johor Baru on their knowledge, attitudes and perceptions
related to HIV and PLHIV. The project was aimed at strengthening the
national policy and programmes on HIV/AIDS in Malaysia.
Respondents in the study recounted their experiences in relation to existing
policies, practices and programmes that tended to disadvantage and
discriminate against them. Besides employers, there was also evidence of
stigmatisation and discrimination of PLHIV from healthcare providers, aid
agencies, the community, and even family members.
While most PLHIV said doctors and nurses were generally sensitive towards
their needs, a few complained that they showed fear of contagion by avoiding
contact, or a reluctance to give treatment.
“One respondent experienced humiliation when a doctor asked him, loudly, if
he knew he was HIV infected, where people around them could hear it,” said
Dr Siti Norazah, a public health consultant from Universiti Malaya (UM).
Sealing bodies in bags after death in hospitals is deemed necessary for
infection control, but that reinforced the stigma faced by HIV sufferers,
the report continued.
During routine testing, the status of HIV-positive sex workers and drug
users was announced publicly in jail or drug rehabilitation centres. This
was followed by the segregation of infected inmates.
“The fear of contagion is the root cause of social stigma,” said Associate
Professor Dr Wong Yut Lin, a co-researcher from UM’s health research
development unit. “Despite campaigns emphasising that HIV cannot be spread
by casual contact or through sharing utensils, people do not seem
convinced.”
Society’s fear of, and stigma against, PLHIV are also tied to moral
judgment. “There is a need to empower PLHIV towards positive living and
greater participation in public life. In other countries, they live normal
lives with families and go to work,” said Dr Wong.
The National Strategic Plan 2006 for PLHIV should be implemented to assure
their right to employment and protection in various settings.
When asked if there was a need for an anti-discriminatory law against HIV
sufferers, Dr Wong added that advocacy groups could take up the issue.
Co-researcher Dr Mary Huang, a Universiti Putra Malaysia associate professor
on nutrition and dietetics, said interviews with members of the community on
how PLHIV got infected revealed many moral-loaded terms such as “free sex”
and “sex with same-sex partners”, but no mention of “unprotected sex”.
Respondents from the community were sympathetic towards children with HIV,
but tended to judge sex workers.
“Often, people want to know how PLHIV are infected. But once they have the
information, they discriminate against them, even if they said they
wouldn’t,” Dr Huang said, adding that people must stop looking at HIV
infection from the moralistic perspective.
Another co-researcher, Professor Dr Low Wah Yun from UM’s Health Research
Development Unit, said more than 60% of PLHIV suffered from anxiety or
depression, while 52% experienced feelings of isolation.
Due to social stigma, 30% PLHIV were afraid to disclose their status to
their family members and almost half were afraid to disclose it to their
friends. This, in turn, deterred them from seeking help.
While drug treatment for PLHIV was available, insufficient attention had
been given to its psychological effects, especially for the newly-diagnosed,
Dr Low noted.
The study also revealed that there was a lack of male responsibility. Men
tended to resist using condoms when they sought out sex workers. They
assumed they would not get infected and, because of that, did not use
condoms when they returned to their wives/partners, Dr Wong said.
In Malaysia, the first HIV/AIDS case was reported in 1986. As of June last
year, 73,427 cases had been reported. But it is estimated that the figure is
four times higher if unreported cases were included.
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