Datuk Paduka Marina Mahathir interview in theSun Weekend

:: theSun Weekend | 7 August 2004 ::
DATIN PADUKA MARINA MAHATHIR has been at the forefront of the battle against HIV/AIDS in Malaysia for the past 10 years. She gets candid with DOROTHY TEOH and JACQUELINE ANN SURIN about her work as president of the Malaysian AIDS Council (MAC), her experience with censorship and the dual face of Malaysian society.

theSun: How did you get involved in the HIV/AIDS issue?
Marina: I kind of got hijacked into it more than 10 years ago. I knew that there was an epidemic around. [Although I] didn't know a whole lot about it, but I did know some people who were HIV-positive, some people who had died of AIDS.

I thought, I'd like to do something, but I really didn't know what. At that time, I had some experience of fund-raising, so I thought that was what I would do.

And, just by coincidence, at that time, members of the foundation called me up and asked would I like to join the foundation, because they didn't have enough women, and things like that. I think they had already planned this out. So, I turned up for the first dinner, and they said, "Oh, well, we'd like to make you chair."

I thought it was really funny, the stars must be aligned. Here I was just thinking about what to do about it, then I get this invitation, so it must be a kind of a calling. So, I said, "OK".

I took it on and the basic thing was to raise funds for programmes and all that, and it wasn't easy at all. People really didn't understand what HIV was all about. They thought, "Why should we give to all these prostitutes? Why should we give to drug users?"

So, in order to be more persuasive, I had to learn more about the subject and I really had to read up a lot. And, that's how it went, basically. I got interested in it because I came up against this sort of barrier of ignorance and prejudice. And then, when I learnt more about it, to me it was a really interesting subject because it's just so multi-faceted. And that suits me very well. Because I get bored easily, I must say [chuckles].

So, the fact that it's got so many sides to it, it takes in so many subjects, I find that it constantly keeps me interested, there's always something new to learn. And, all of a sudden, it's 10 years.

The fact that your father was Prime Minister at that time, did that help open some doors?
Well, I am sure it played on the minds of the people who invited me on to the foundation in the first place. As far as door-opening, yes, it does, it did, a little bit. But that didn't stop people from being ignorant and me reacting to the ignorance.

It also meant that I still had to be credible. I mean, they might give [to] me begrudgingly, but they might not sustain it because they still don't get it. So, I felt very much that I still had to perform.

Opening doors was one thing. When I get in there, I still had to know my stuff, I still had to persuade them. So, it's not enough. It's a factor, but it's not enough.

Do you think people are better informed now? If you look at the posters [at the MAC office] which say, "Can I hug a HIV person?", doesn't that show that kind of ignorance is still prevalent?
I think it is. There are different levels of awareness. I think people are aware there is a global pandemic called AIDS, and you can't get away from it, there's so much information.

But actual understanding of what it means to them, and what it means to our communities and all that, I don't think that's there. I think there's still a lot of misperceptions and stereotypes.

You still get the most basic questions being asked. People still don't know that there's treatment despite all the news about drugs and all that. So, I don't think that we've reached a level of awareness where people are able to welcome people with HIV easily.

How does it make you feel, personally?
Frustrated [laughs]. Very frustrated. I mean, if you are used to seeing results in whatever you do, you can kind of measure it. And here I am, 10 years on, and what do I see? I see numbers rising every year.

I shouldn't have to take it all personally, it's not my fault [laughs] but, still, it sort of makes you feel, "How much have we achieved? We haven't achieved anything."

I always like to say, how, when I first started in this field, the predictions were that there would be 30,000 infections by the year 2000. And here we are, only four years after that, and we are reaching double that amount.

So, you sort of feel like you've been running on the treadmill. You haven't gone anywhere at all. Which is not strictly true. We've made a lot of inroads, I think, in understanding, in getting AIDS out there into the public [arena], it's not a hidden subject anymore.

But, in terms of actual prevention, I don't think we've got anything. Hardly. Just look at the numbers. I still don't understand people playing it down when our numbers are still increasing, every year.

You were quoted from Bangkok [at the 15th International AIDS Conference] as saying that the Malaysian government hasn't done quite enough in terms of prevention. What else could they be doing?
There is a fundamental [pauses] misperception, I think, about prevention. We know how to do prevention, actually. But the question is, who is going to do it? Because a lot of prevention really has to deal with very sensitive issues, obviously. We're talking about sex, we're talking about very private behaviour behind doors, we're talking about drug use.

They [the government] sort of felt that, "OK, this is what we need the NGOs for. Let them do it." And so, that's the story we keep getting, "We can't do it, but you can." And now, "We're going to give you the money for it." So, now, we've got lots of money.

Money isn't an issue. If anything, we have an issue now of trying to absorb that money, to increase our capacity to absorb that money. But the thing is, you can only do these things within a certain policy environment.

And it's the government's job to create that environment with policies that enable us to do prevention. If we want to talk about condoms -- and you are not allowed to advertise, you are not allowed to promote, you are not allowed to talk about it to young people -- how on earth do you do prevention?

It is not a conducive environment. If you want to do harm reduction for drug users, there are so many things that we can't do. It's really funny, I find, in talking to my colleagues on the government side. They somehow equate "non-government" with being able to do illegal things.

I say, "I'm sorry. I'm also a citizen of this country. I also have to abide by the laws of this country. I cannot break laws."

So they think that NGOs operate outside the confines of the law?
Exactly! I find that it's a very common government perception. And we can't do that, you know. You're going to get arrested. I mean, non-government is not anti-government [chuckles], or alternate government or whatever.

So, the government has a role to play, and that's really, really to make the environment better with good policy.

But why do you think the government has been so slow to actually join the battle against AIDS and to help set the policy environment that you have been talking about?
I think there are many reasons. I don't think they are slow, exactly. They certainly started in 1985. But, in terms of sustainability and reacting to developments in the AIDS field, that's been slow. Some things they've been good at, for instance, treatment.

But, really, it was us [MAC] advocating for treatment that [is the reason] they are now getting treatment on board. But, on the other issues, they've been treading very gingerly, and the reason we always get is "Don't give an issue for the Opposition to take up."

Opposition meaning PAS?
Mostly, meaning PAS. Because the other Opposition [parties], they never talk about AIDS. I don't think they even figure. I'd like to know why they don't. But, mainly, they [the government] are scared. I guess the idea is that if we promote condoms, PAS will use that as an election issue, we will lose. That's the conventional wisdom.

Nobody's ever tested that. I don't know whether it's true or not. But, now that the election is over, and with very resounding results, I should think we ought to get bolder.

And it's better to do [it] now rather than wait like, nearly, five years before the next election. I think if you do [it] now, and you show results, you are going to win, right? I mean, if you start saving lives now, in five years' time, you're going to see the results of that with numbers [of AIDS-related] deaths going down.

I think the report from Bangkok also quoted you about what they are doing in Iran?
Iran has been this major revelation to us. Some of us went to the International Harm Reduction Conference in Melbourne [and listened to their presentations]. And they are just so amazing, these Iranians.

You know, they have a national harm-reduction strategy. Harm reduction refers mainly to prevention of HIV among drug users. A national harm-reduction strategy with a budget approved by Parliament and [that] comes directly under the President.

And what are they doing? They are distributing condoms in prisons, they're doing needle-exchange programmes, and they are all very practical about it. It's really amazing. You can only just stand there agog, because you know Iran has this image of being so conservative and all that. It still is, in many ways, but I think on some levels, it is very practical.

What do you think is happening in Iran? Is the problem with AIDS and drug addiction there quite extensive?
Well, they do have a drug problem. Don't forget, they are very near Afghanistan and the drug- trafficking route. It might be all those years of very, very harsh conservative rule, [that] puts pressure on people, and people find entertainment in, you know, certain ways.

And they are very upfront about it. They do have prostitution, they do have a form of legalised multiple partnering, and all this in terms of public health can become big issues.

I think what's important is that in Iran, the drug issue is under health. It's treated as a health issue and so, it brings a different perspective.

It's not like us [in Malaysia] where it's under law enforcement. And so, there's a very law-enforcement approach to it, which is very different from a public health approach. They completely understand the multi-faceted [nature] of AIDS.

In Melbourne, they brought their version of an MP [Member of Parliament] in the new assembly because they know that parliamentarians have to understand what harm reduction is. They brought one of the judges in the court system along because a judge has to understand [the issue]. They brought the Director of Prisons.

In fact, the [Iranian] Director of Prisons gave a presentation in Bangkok. It's fantastic. And we want to learn from them.

Do they come up against the same criticisms about promoting illicit sex if they provide condoms?
I'm sure they do. But they seem to be able to work out the reasoning for it. In Bangkok, we had a skill-building workshop on working with Islamic religious leaders, and the Deputy Health Minister of Iran came.

And he got up and very, very eloquently put forward the case for condoms. He said, "If you think that giving out condoms is a sin, isn't it a bigger sin to allow someone to get infected?" So, it's really like the concept of two evils. Which is the lesser evil? And that's the way they've worked it [out].

Do you think the growing conservatism in this country is hampering the fight against AIDS?
I don't know [sighs]. Ours is a very funny country. It's a very dual-natured country where people like to be very conservative publicly but they are not at all privately. You just have to look at some of the [sex-related] cases on trial right now, and you sort of think "Whoa".

We do have to deal with religious people and really, we used to think, "Let's talk to them in their own language." But, we realised it doesn't work because we don't know how to speak their language. We are not experts. We come out sounding like amateurs.

So, either we get the people who know the language to speak to them -- and certainly, those are allies that we need -- or we simply present the facts. Which is our job, which is what we are good at -- "This is HIV. This is what it does. This is what it is doing to our society. What do you think of that?"

And they tend to respond better that way. And, I think that's the way it should be. I mean, if we get into the whole theological [discussion], we are going to get confused and [will] go round and round.

Would you say the Malaysian AIDS Council (MAC) has made inroads with the ulama in this country?
I think we have. Because we're working on the ground, and we're having to deal with people who are HIV-positive who are having all these problems with religious people and things like that.

It's been very stop [and] start. It's been a learning curve for us. Like I said, we started off thinking we had to speak their language, and pretty much messed that up.

Let me tell you what I feel we've learnt. Religious people are people, too. And they have fears. And where does the fear come from? It comes from ignorance, just like everyone else. So, you have to break down that ignorance. You have to give them information, and ask them, "What do you think?" And it's amazing, the way they reacted.

We had a colloquium on Islam and AIDS several years ago, [for] which we involved them from the beginning. And you know, we have this mufti saying, "Why can't we have condoms? Why can't we?" There wasn't agreement. There was no consensus on this. But the fact that there is no consensus leaves you room.

And then, when we started, we did this training of religious officials at the grassroots level. Again, it's very important to involve them from the beginning. We involved them in writing out the manual. We tested it out. And we found that it was really, really very much welcomed at the grassroots level.

There's a very different scene out there compared to people who are in offices here. Because there, they are facing it. They are actually facing it. And they didn't know what to do.

You know, they've had so little information. Nobody's thought of going to them and giving them AIDS information. Because everyone thinks that AIDS information is just for you yourself to use but not for you as a teacher.

In one session, they were doing all the usual things about condoms -- "Cannot, cannot, cannot, cannot!" And finally, our staff asked them, "Have you ever seen a condom?" And they all sort of said, "Well, no, actually." So, what did we do? [We] went out, bought a whole bunch of condoms and gave each one of them, men and women [one]. And said, "OK, now take it out, look at it. This is how it works."

And, at the end of it, they felt, "Oh, this is only a little piece of rubber. Why did we make it so powerful?"

You had to demystify the condom for them?
Absolutely! And nobody ever thought of that before, right? I mean, this whole thing of "If you give people condoms, they'll run out and immediately think of it as a licence to have sex with all and sundry." If you've ever seen a teenage boy trying to even ask a girl out, and how difficult that is, I mean, to get to the stage of even using a condom, for God's sake, it's like way down the line.

It's not a licence to sin.
It's not. It's a tool. You can use it or don't use it. Someone told me that you know where you can find condoms? In the boys' wallets, because, some of them, they go on holiday, and this is what they bring back. And then they keep [them] in the wallet. It either means that they are not using it because it remains in the wallet. Or, well, if they ever need it, it's there, on hand. Which is good, right?

But, it's not one equals the other. There have been numerous studies that show that one does not include the other. And, this is where you have to pull in all these human stories.

I remember once giving a talk at the Ministry of Defence. The chief of armed forces asked me to come and talk about AIDS. And they had everyone there. We had a whole session where we had everyone from generals down to privates. And, I gave a talk, and at the end, there was a discussion.

There was a question, "Should we put condoms into the packs of soldiers going overseas?" OK, [my] question [to them was], "What do you all think?" And one woman got up and said, "Well, you know, I don't think so because that would be licence for him to do it. My husband is not in the serving forces, he works in the office. But, I don't think it's a good idea."

I tell you, all the other women looked at her like, "What do you know? Yours works in the office. Ours go overseas."

And then, one soldier got up. And said, "Well, I do go on overseas missions." At that time, I think we used to send them to Bosnia, Cambodia. [He added] "And, if my wife put condoms in my pack, I wouldn't take it to mean that she doesn't trust me. I would take it to mean" -- and bear in mind there are generals, the army imam, everyone there -- "I would take that to mean that she wants me to remember my responsibility to my family. When I see it, I will remember."

I was, like, "Wah, that's a very good way of putting it, you know [laughs]. So, it's very interesting. I just think that there's a big difference between the bureaucrats' view of condoms and the actual public's view.

So, who [are] we working for? For the bureaucrats? Or for the public? One MB [menteri besar] tried to ban the sale of condoms, and there was a huge public outcry over it. So, you know, the public has a different view about it.

Is there hope for protection for women in the form of the lemon as claimed by Australian researchers? Or in microbicides in the form of vaginal gels, creams or foams being developed that can protect women during sex?
The research for the lemon thing is quite exciting and promising. It's being tested out, and we heard something about it during the International AIDS Conference in Bangkok. It's exciting because if it really works, it's a simple folk remedy that is cheap.

There was a session on microbicides in Bangkok and they are very optimistic that within the next five to six years, there will be something available. With vaccines, we keep coming to a dead end and if anything at all, we will only have something by 2015. But, we are not putting our bets on it.

All these give women the power of choice. The current prevention methods, such as abstinence, being loyal and using a condom, are usually in the hands of men, and it leaves women vulnerable. These tools will help to empower women to be responsible for their sexual health.

What are some of your thoughts coming out of the 15th International AIDS Conference in Bangkok? Is there more hope? More despair? It sounded like there was a lot of despair from all the speeches.
There's not a lot of new things. We know what works. But people [are] just not doing it. Why? Many, many reasons, and a lot of it has to do with political will.

[The] money is there, although money tends to come with strings attached these days. People say abstinence is what works. Well, show us. There's nothing that we can show. Good prevention programmes that certainly don't shy away from talking about condoms have worked. Yes, you can talk about abstinence, you can talk about faithfulness but you also have to talk about condoms because people are diverse.

And the reality is that people are doing it.
There was a big fight, there was a beautifully named session called CNN versus ABC. Condoms, Needles, Negotiation Skills versus Abstinence, Be Faithful, Condoms. And, people were talking as if it's an either or situation. It can't be an either or. It has to be all.

Apparently, there was a young boy, 19 years old, who said, "I think abstinence has worked for me." Ask him when he's 26-lah. You know, when he's seen a bit more of the world, then you tell me whether you can hang on to it [abstinence].

I always like to tell the story. One time I had to give this whole bunch of parliamentarians a talk about HIV. After that, one of them got up [and said], "Puan Marina, why you always talking about condoms? And why you always talking about countries that have AIDS? Why don't you talk about the countries that don't have AIDS so that we can learn from them? You know, like Saudi Arabia."

I said, "Well, I [would] love to talk about countries that don't have AIDS. Unfortunately, I can't find any. And that includes Saudi Arabia. I mean, there's a reason why I keep bumping into Saudi doctors at AIDS conferences. And besides, where do you think Saudi men like to go on holiday? And they are like, "Er... "

And about condoms, this is a bit confrontational, but sometimes, I think you have to do it. A whole roomful, there were about 200 people there. And I said, "OK. If I ask all of you right now this question: In the last two weeks, have you slept with anyone other than your spouse? All of you will tell me, No. But some of you might be lying. But I don't know which ones. But those are precisely the ones I have to worry about. So, it's better for me to give the information about condoms to all of you.

"The ones who don't need it, never mind, you [can] file [this] away as information. But the ones who do, I've told you something that you might find useful, right? And I might save your life, right?"

And the lives of their spouses.
Ya, so [they kept] quietlah.

This was in Malaysia, Malaysian MPs.
Oh, yes [laughs]. Oh, yes.

Were your parents supportive of the work that you were doing?
Well, they were never not supportive. They never said to me, "Don't do it." I lead a pretty independent life from them. I certainly don't ask them for permission. They might have been curious, like, "Why this field compared to others?" And like I said, it wasn't so much a matter of choice. It was a matter of people getting to me at the right time and things like that.

But, they're both doctors, and they both have a great understanding of development issues. And they see the connections. And my mum particularly, she's done a lot of work on rural health, women's health.

So, they're both very supportive, in many ways. And I am hesitant to ask for more. People sort of say, "Why don't you get your dad to say, you know, yes, we have to have condom programmes". Well, I'm also sort of funny about that in that people always seem to think that anytime I pick up the phone and talk to him and say, "Hey, can we do this and this and this", and then it happens. It just doesn't work that way.

I'm very conscious of not abusing the position. Because the office of the president of the Malaysian AIDS Council is not the same as being the daughter of the Prime Minister. It's not A equals B [laughs], you know.

The next president would be an equally good person but wouldn't have that thing [connection]. So, I felt I couldn't use that connection just like that, and I used it as judiciously as possible, when I really, really needed it.

[And] basically, I still have to deal with people down the ranks and it is not good for me in the working relationship if they keep thinking I can just go up [to the top]. I still have to work through the issues with them. So, it doesn't help in that way. It's only really, really big things.

When you have been really frustrated, have there been occasions when you wished that you had used that connection a bit more?
Mm... no. The times I've used it, usually it's by writing him a note.

Official?
Well, unofficial note. When I feel that some policy is going to come out that would really, really be detrimental or people have made pronouncements that were detrimental.

I think there was one time, an announcement by the Minister of Religious Affairs, that there should be mandatory pre-marital testing. And I just sort of wrote him a note and he's a doctor, and he understands that public health thing very easily. So, that didn't happen, although it happened in one state. Which just shows the limitations of this [connection].

And the other time [was] when some group decided to set up a sort of anti-gay thing. We issued a public statement but I also wrote him a note saying you better not support [it], only because it's not going to do you any good, not going to do anyone any good, it's going to create endless problems which you don't need. So, he didn't.

This was Pasrah (the People's Anti-Homosexual Volunteer Movement founded by Umno politician Ibrahim Ali in 1998), right?
Ya, which I think opened and shut very quickly.

Does it make it easier then in some ways that your father is out of office now? There isn't that public perception that there is that connection.
Well, it's early days yet. Actually, I don't know. I've been in this so long, and I'm a working person. I think I know myself, I write papers and all that, so the connection thing is really a sort of by-the-way thing.

And I like to impress on the staff that we always have to fight back. We need to with sound evidence and facts, and things like that. And, if we need to talk to someone high up about the issue, we come up with that. We come with all the evidence and that's the way we worked before, and even now. If everyone were professional, I shouldn't think there would be any difference.

Although I heard -- of course, nobody would do this directly to my face -- I heard people say before Oct 31 [2003 when Mahathir stepped down as prime minister], "Waitlah. Seelah what happens". OK, seelah.

As in, see after October, it will be harder for you to raise funds?
Or getting any attention. I thought it was a highly unprofessional thing to say. This thing is bigger than me, you know.

But is it the reality that it's become harder for you to raise funds because your father is no longer Prime Minister?
No, I don't think so. I haven't seen it yet. We do have our big gala this year, our biannual fund raiser, so we shall see. But, I must say people have called up to offer [funds], as well. Seems like business as usual.

Were there some things which you wished Dr Mahathir's administration had done that wasn't done?
[Sighs] I think it would have been good if he had [said] every member of the Cabinet has to be briefed on HIV. I think it would have made a whole load of difference. That's on my wish list, you can say that [laughs]. Because I don't reckon that they all have equal understanding.

Do you have a wish list for the new administration?
I thought I already said it [laughs]. My wish list -- the Prime Minister to head the National Aids Committee. Every single member of the Cabinet to get a briefing on HIV/AIDS, and then we'll go from there.

You've been doing this work for more than 10 years.
Ya.

Do you envision a point when you might retire from it?
Tomorrow? [Deadpan]

I think there might be protests?
Dunno. Well, I was so upset when my dad announced his retirement because, "Oh my God! That's my idea." And if I do it now, everyone will think, "Oh, just because he's retiring, you are also stepping down, and ya, it's because he's out of office, you see you cannot carry on." Like, I am forced to stay on.

But, you know, it is exhausting. It is one of those fields that is exciting in many ways but incredibly exhausting, and you do get burnt out enormously. Sometimes, I get real tired. I don't think that I would ever leave the field but I think I don't have to be heading MAC all the time. I think we should be bringing up a lot of new young leaders.

But if you weren't doing this, what would you be doing?
I honestly don't know. I'm not much of a forward planner. And, 10 years ago, I would never have imagined that this is what I would be doing now. And what would I be doing otherwise? I cannot imagine.

Because, really, working in this field has opened up so many things for me. It's exposed me to so many people, it's exposed me to so much knowledge. It's also made me find new things to do, for instance, like doing 3R, the TV programme. That really comes out of the AIDS work. I don't think that that would have happened otherwise.

Because that was born out of wanting to address the issue of women and AIDS, and you realise that you can't without changing the environment for women. So, that's an attempt to do that through the media. And that's how it came [about]. It's a private venture but it also contributes to this work.

Do you have an executive role in 3R Philippines [which was launched the day this interview took place]?
Not directly. Lina Tan and I, we jointly own 3R, so we franchise it out. I don't know if people understand the significance of 3R. I find that we [3R] are often covered by entertainment writers. They always look at it as a form of entertainment but it's a far bigger thing that that.

Aside from that fact, I think we are the first Malaysian TV programme to be franchised. I think it's a big story which no one is quite getting. Because we [are] going to also have 3R Indonesia, 3R Thailand, 3R Vietnam, maybe even India, we're hoping for India.

Is censorship a problem?
Oh, [it's an] enormous problem. This is my pet subject. Because I think it's very insidious, very pervasive. If you ask the general public, "What do you think of censorship", they'll probably think it's a good thing because their view of it is it's to keep out pornography.

But actually, a lot of censorship has nothing to do with pornography at all. It has to do with a certain point of view that is dominant. You know what the Censorship Board complains about [in] our programme? Guys wearing earrings. This was a guy who was voted one of the bachelors of the year in some magazine. He had an earring [on]. And we couldn't show him with the earring. I mean, there was no way anyone would think he was a girl.

We did a whole anti-smoking episode but we couldn't show girls smoking cigarettes. Why? Because good girls don't smoke. But, it's happening out there. I see girls in tudung smoking, but the point of the entire episode was against smoking, because neither Lina nor I smoke.

And it was very clear we were talking about all the health issues and all the image issues to do with smoking. But we couldn't show [it], and you think our audience is stupid? They're not stupid. I mean, it's ridiculous! Of course, we got an entire episode banned.

The smoking one?
No. The sexuality one. Just because we had two women who were gay who said that their families were supportive. Well, that's the reality for them. And the Censorship Board wouldn't allow that. They said, "You cannot say the families are supportive because this would bring down society." Wow, that's giving me a lot of power. I can destroy society in 30 minutes.

So, I think it's [censorship] a lot more insidious than that. It assumes that we are all stupid and we need to be protected from [I] don't-know-what. And it's also very gender-biased, I find. I'm going to this session at the KL (International) Literary Festival. There's a session on censorship where they have three men there. They [are] only going to talk about political censorship. I know. Because I know all three guys.

I'm going to get up and say, "You should talk about the gender bias in censorship as well." Women's magazines are far more censored than men's. The other day, I was talking to this woman from a local women's magazine. They do catwalks, this season, spring, summer or whatever show -- all these little, little models on the catwalk. There was one [picture] where her [a model's] breasts were a little exposed. [They] got called in by the Home Ministry. Picture this small [indicates size with her thumb and forefinger]. Why?

And you look at men's magazines, and the girls are all like this [poses], full page, they don't get called in. It's a gender bias, and it's constantly [about] women's bodies. Why can't women look at women's bodies?

Unless you can tell me [that] there are a lot more men buying women's magazines than there are women [buyers], what is the problem about us [women] looking at women's breasts? It's okay for men to look but not women? I don't get it.

Do you think we have become more puritan over the years?
Ya, for what reason, I don't [know]. We have and we haven't. Again, we are this dual-natured society. We give this face of being so conservative and puritan, but at the same time, we are not.

Is that hypocrisy?
Yes. Why don't we just say it? Again, I point to the trials that we are reading about in the papers.

There's some talk that MAC is able to garner -- unfairly as well -- a bigger portion of the funds out there than other NGOs.
You think that's true? I suppose I shouldn't name names, right? I know people who have ten times the size of our budget, [and] nobody says anything.

So, it's a disadvantage because of who you are and who your father was?
Yah, people perceive that we're rich, so [there's] no need to give funds. And also, lingering prejudice about AIDS. No, I don't think so [that we have a bigger portion of the funds than other NGOs]. I really don't think so. I think overall, health budgets in this country should go up, [and] not just for AIDS.

And people think we are taking away from others but we're not. Overall, the budget's not very big you know. We're very open. I think we have been listed as one of the organisations that's most transparent about our funding and our accounting.

On a personal note, what has life been like for you and your siblings now that your father has retired? Is there less public scrutiny? More time for family gatherings?
No change. I'm still working and have not seen much of him. He travels a lot, just as before. He gets tons and tons of invitations. It's hard to keep up with him. It really, really has not changed although the attention has shifted to other people's children, which is kind of nice.

Would you say that it was a source of stress to have to be conscious of the public scrutiny all the time?
Not stress but it's a strain because one always has to think, "How will this reflect back?" Funny, though, because for our gala dinner this year, I'm having the opposite problem because I have to think about what to wear.

Before this, I would be sitting next to my dad and in the photo, I would be standing next to him. So, I didn't have to worry about what to wear. But this year, I have to think about what to wear because I don't want to seem disrespectful to the other person. I don't know if it's a funny thing to think, but I do think that way.

Because [before], whatever I'm wearing probably has the approval of my dad, right? My dad won't care, because he's my dad. I can't be trying to seduce my dad [laughs]. But when it's not my dad, then I have to think about it, kan?

So, its your dilemma for this year's gala?
[Laughs] Isn't it weird?

But in other ways, it's more liberating?
It is, in many ways. You sort of feel like you can be yourself a bit more.

Even though you are still recognised wherever you go?
That's ongoing. And people are very nice. I still get stopped, and people say, "We miss him. "OK, thank you, I'll tell him that [laughs]". This morning, I went to the hairdresser's and it wasn't open yet, so I'm standing outside and then [there's] this guy with a newspaper [who says] "Oh, hello, Datuk."

And it's this total stranger, and me and my hair like this [gestures around her head], [replying] "Hello." It's a real hazard [laughs].

Do your children get this kind of public scrutiny as well?
No, I don't think they [people] recognise [them].

You keep them away from the public eye?
They're very young. There's no reason to [expose them]. If you notice, I don't even talk about my daughter in the column [in The Star] anymore. I used to talk about her a lot but once she became a teenager, I thought it was really invading her privacy, so I stopped it.

Does your husband face the same kind of pressure you face, being married to you, although he is a celebrity in his own right.
I don't know whether celebrity is the word for it. He's certainly well-known in his field. I don't know that many people know what he looks like. He kind of escapes that. [But] ya, sometimes, people think of it as a way to get to me or to my dad. It just puts us in such awkward positions, especially when it's people you kind of know and you do want to help but it's like, [grimaces] "Why does it have to be this way?" It's really awful having to say, "No".

But you don't get that so much now?
No. No, I don't. That's a relief. [People may think] "Ah, she's useless now. Not much good for anyone."

Do you all get to see your father much?
Occasionally, if we organise lunch or dinner or birthday parties. But, recently, they were away for three weeks, which coincided almost exactly with the time my daughter was back from school and my younger one's birthday.

And they weren't here. [I was saying], "What is this? Why [are] you away so much?" My mum [was saying], "You tell him, you tell him. He's supposed to be retired."

Do they make it a point to be around for their grandchildren's birthdays?
He tries, it's not always possible, but usually, he's there.

There's no family tradition of Sunday lunch or something like that?
No, [it's] very hard. We all do different things. It's a challenge to get us all together in one place. So, we try not to stress over itlah. [For] special occasions, we might book way ahead. We say, "OK, block off those dates."

You think you'll get down to writing a book?
I would love to, if only people would let me stop work [this said meaningfully, to MAC staff sitting in on the interview]. This is my unrequited dream.

And what would the book be about? Have you got any ideas yet?
Well, it won't be fictional because I don't know how to write fiction. I always thought that I would like to write a kind of biographical [book] about being a woman working in HIV. Because I think it's a great entry point to talk about many things. Because it is a very particular position to be in, being [a] Muslim woman working in HIV.

So, are you giving yourself a certain number of years more [in MAC]?
One year?

Then, you can get down to the book.
I don't knowlah. I keep thinking I should do what my dad did. Just announce it [retirement].

But when your dad announced it [retirement], they convinced him to stay on for another year!
I know. But, at least, it was a deadline.