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"Negative side to being HIV+"
The
Star (www.thestar.com.my)
(20/05/07)
The first case of HIV/AIDS in Malaysia was detected in 1986. It has been
over 20 years since, so how are Malaysians shaping up in their awareness and
understanding of this disease? On International AIDS Memorial Day today, we
look at where we stand.
THREE-year-old Amin* loves to be carried and swung about. Once you start
doing this to him, it will be hard to stop as he will beg you with his
soulful eyes to continue. Amin also loves ice-cream and colouring
activities, and has his fair share of squabbles with the other children at
his home. Amin is like any little boy, but the one fact about him that might
make someone jump is that he is HIV positive and he comes from Rumah Solehah,
a shelter for women and children with HIV/AIDS. Very often people who have
HIV are victims of stigma and discrimination.
“I have seen people freezing at the very mention of the word AIDS,” said Abu
Bakar Jalaluddin, President of Women's and Health Association of Kuala
Lumpur (Wake).
A parent of two, S.Krupa* knows how HIV is transmitted. But she still would
not encourage her kids to socialise with someone like Amin.
“It's a bit mean and it's not the child’s fault (that they contracted HIV)
but that's the reality. We are just protecting our own interests,” she said.
Rumah Solehah guardian Wan Hava Wan Hussin, who is fondly known as Kak/Mak
Wan, is very familiar with this attitude. When she enrolled two of her
children in school last year, a parent came to know that a child in the
class was HIV positive.
“He was scared in case an accident happened. He said his son’s life was
irreplaceable and the government or an NGO should build a separate school
for children with HIV,” related Kak Wan, adding that the issue has quietened
down since then.
Kak Wan faced a similar problem when she went to enrol one of her children
in a kindergarten last year.
“The parents confronted the teachers, saying that if they did not ship the
child out, they would shift their child to another place. The next year the
kindergarten said there was no more place for us.
“And this is a religious kindergarten,” she said.
As such, the eldest child in the home, Zul*, 12, whose mother died of AIDS a
few years ago, has never told his friends at school about his condition.
“I am afraid they will shun me,” said Zul who likes to play badminton and
aspires to be a policeman.
Dr Kamarul Azahar Mohd Razali, a paediatrician and infectious diseases
consultant at Kuala Lumpur Hospital, believes the attitude of people is
caused by a “phobia of the unknown.”
“It’s infectious, but it’s not contagious like leprosy and TB. Even if
someone with HIV bleeds and there is contact with another person who has
breaks in their skin, the risk of contraction is 0.3%. The virus is there,
but the load is too little,” said Kamarul.
The stigma stems from the fact that HIV/AIDS has been painted in a way that
it’s “dreaded” and “looks horrible”, he explained.
“We have to realise that people are living longer and they can still have a
meaningful life. It is not a death sentence,” he said.
The number of children who get the virus from their mothers is also
decreasing. Without technology, the natural progression of the virus to the
baby is 25% to 30%. With advancement in the medical field, this progression
has been brought down to one per cent in the West and four per cent in
Malaysia.
Another unfortunate aspect of HIV/AIDS is that people who are not infected
but are affected by it also face discrimination. Zul’s sister, who is free
of HIV and is in Standard Four, has been subjected to some hurtful remarks.
“She asked me why people say that her brother’s blood is same as her
mother's,” said Kak Wan.
Dr Kamarul believes parents are responsible for their children's attitude.
“I don’t think children are the problem. It’s parents who are poisoning
their kids with negative ideas,” he said.
Mona Hanim Sheikh Mahmud, who heads the Special Project Division of the
Malaysian AIDS Council (MAC), agreed with him, saying, “Children are born
without prejudices. Any traits they learn are from their parents.”
People are very judgemental, she added. “People with HIV are associated with
wrongdoing. How can they say the same thing with children?”
Perhaps one way of avoiding problems is by maintaining discreteness, and
Wake, which operates three shelters for people with HIV/AIDS, one of them
for children, does this by letting out information on the basis of “what
needs to be told”.
“We only let the principal know of their condition. Besides that, they go to
school on normal school buses,” said Abu Bakar, who maintained that none of
his children have faced any problem.
HIV/AIDS activist Jamaliah Sulaiman, 41, on the other hand, is not afraid of
letting people know that she and her son are HIV positive. Like others who
are HIV positive, Jamaliah had initially kept her condition secret but last
year, she disclosed information about her child’s status to the kindergarten
that he attended. Although the information was supposed to be confidential,
it was somehow leaked out and soon went around the whole village. People
protested and, stunned, Jamaliah could do nothing but defend her son's right
to go to school.
“I know my child’s rights to go to school and study,” she said.
With the help of the village leader and doctors, she managed to convince her
neighbours that it was not dangerous to socialise with them. The neighbours
have become supportive and one even told her that she imagined being in her
shoes, said Jamaliah, who got the virus from her former husband who was a
drug user.
Jamaliah’s son is now in Standard One and enjoying life as any child should.
“He shares food with other students and plays with them. There are no
problems. People have to open their minds and their hearts,” she said.
*Names have been changed
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