Fighting stigma, discrimination

National 5 minutes, 35 seconds


FROM being afraid to becoming an indefatigable crusader: This is the apt description for 22-year-old Siti Kailene Mohd Jazlan Kashfi, a volunteer for the Brunei Darussalam AIDS Council (BDAC).

When she was 17, the now full-time Universiti Brunei Darussalam junior student, used to get scared the moment anyone would open their mouth to talk about HIV.

But her fear gave way to curiosity about what really is HIV (human immunodeficiency virus) and AIDS (Acquired Immune Defeciency Syndrome) and how the virus is transmitted and its ill effects on the body. To satisfy her inquisitiveness, she decided to join the non-government organisation BDAC.

BDAC is a non-profit organisation carrying out HIV/AIDS and reproductive health work in Brunei. The group advocates, educates and empowers the community on the still much misunderstood infection.

“People used to tell me those living with HIV have no symptoms and were as normal as you and I. So I was not sure about how it was transmitted. However now that I am fully aware, I am helping those like me who lack the knowledge on HIV,” she said. Her aim is to break the stigma against people living with HIV – the way she herself used to stigmatise HIV positive individuals.

She admitted that her transformation was not immediate and even while she persisted to learn, once in a while the fear would again rear its ugly head.

She said that even after attending an International Conference for AIDS in Asia-Pacific in Thailand and sitting in a room full of HIV-infected people, the past fear would be revived. However, after spending time with the HIV positives for the next few days, she realised how important it was to encourage those living with HIV to spread awareness about how the virus could be transmitted and not to be fearful of being around them.

“People who are living with HIV are normal people, just like you and me,” she said. But, Siti realised that as she tried to break the stigma against HIV positives, she’s now being stigmatised. Even her friends would sometimes avoid her whenever they hear she would be meeting with other BDAC volunteers for their campaign.

“They do not understand what HIV is, so whenever I go for BDAC events, they ask me why I work for AIDS people? They also ask me whether I myself am infected with HIV,’” she said.

In response, “I would ask them if they would run away or unfriend me. Then I would use the opportunity to try to tell them what HIV is about and how it is transmitted,” she said.

“When they ask me whether I am scared working with BDAC, that is exactly the idea they have that I want to break. That is why my passion in BDAC is strong, because I want to change people’s mindset on HIV and those living with HIV,” she said.

How can she tell her target audience? She said whenever anyone would question why she was volunteering with BDAC, then that person would definitely need to be informed about HIV.

Like Siti Kailene, BDAC’s president Iswandy Ahmad said he too used to be stigmatised, and was even called “AIDS boy”.

But Iswandy feels those days are now gone, as society is more knowledgeable on HIV and understand that HIV should not be subjected to discrimination.

Iswandy said it is vital to continue spreading awareness on HIV and AIDS, until one day they can declare there are no longer any cases in Brunei.

Mohammad Rafee’ Hj Isa, 18, said people have accused him of being HIV positive but had convinced them he was not. “People assume that if you are a member of BDAC, they think we are HIV positive. So explaining and convincing them otherwise helps clear the misunderstanding,’’ he said.

He said he would continue to impart to the youth the knowledge and information about HIV and AIDS, and if one student would share the information, it would be more than enough to save a life, and when the information would continue to be shared then eventually thousands or millions of lives would be saved.

Siti Kailene said working with other organisations dealing with HIV and AIDS abroad has also helped her to be more culture-sensitive when it comes to spreading awareness. “If I am a person living with HIV, I would want people to understand what HIV is. HIV is taboo in Brunei and those living with HIV do get discriminated,” she said.

She said she wants to bring the attitude of being open to Brunei and encourage those living with HIV to come out of their shell and spread awareness about it. “We want to encourage those living with HIV not to be scared about what the community thinks of them. At the same time, we also speak to community groups to educate them about HIV and not to stigmatise those living with it,’’ she said.

She said she currently works with another volunteer at BDAC, who himself only this year revealed to them he is HIV positive.

BDAC currently has over 600 members, with more than 100 who are active volunteers.

“We involve him in all the projects we do. For example, when we go to schools to spread awareness about HIV, he comes with us too and helps in giving talks,’’ she said.

Siti Kailene said he’s well-equipped with knowledge on HIV, and volunteers at BDAC do not treat him any differently.

In April this year, Iswandy cited statistics from the Ministry of Health indicating Brunei recorded the highest number of new HIV cases in a year with 28 cases reported in 2015, with seven women. Iswandy said the increase in number of cases involving women represents a worrying trend as women represented only a very small minority of HIV cases in previous years. From 2012 to 2014, 38 new HIV cases were reported.

The group’s president said it was his passion, combined with commitment and action that makes him eager to help people living with HIV or are at risk of HIV to become their voice and equip society with skills and knowledge to understand the infection.

Another volunteer Siti Khalilah Hj Abd Khalid, 29, said she joined BDAC in 2009 when she was 24. Currently a teacher at the Rimba II Primary School, she said she would continue being a volunteer at BDAC because HIV and AIDS remains taboo within the community, and the only way would be to spread awareness about it through awareness programmes and community work.

“We want to correct all myths and speculations on how HIV is transmitted and not to stigmatised anyone working with HIV and especially if they know of anyone who is HIV positive,” she said.

The Brunei Times