THEY WILL ASK thee as to what they should spend on others. Say: "Whatever of your wealth you spend shall [first] be for your parents, and for the near of kin, and the orphans, and the needy, and the wayfarer; and whatever good you do, verily, God has full knowledge thereof." - Al-Baqarah (2:215)

Monday, 4 June 2007

Family support

On my NGO’s name card and letterhead, it’s written there “For the Support of People Living with HIV/AIDS, Their Partners, Families and Friends.”

So our job scope not only covers support for the PLWHAs themselves, but also all those mentioned above. It’s not really much of a problem if the family members already know and are supportive. They are usually very cooperative and would welcome our visits anytime and we’d be very free to talk about HIV in their homes.

But when the family members are not so supportive, and the PLWHAs need our help to explain about HIV to them, it may be quite difficult especially when they don’t even attempt to listen. We’ve had fathers making their HIV infected daughters feel unwanted. We’ve had siblings making sure they have different sets of household utensils so they would not have to share with the infected sibling. We’ve had stepmothers separating the clothes of the infected step-sons/daughters for fear they may get infected if they wash the clothes together.

How to explain to them when they are not even willing to listen? Like in the case of Ifa’s father who’d disappear every time he knew someone would be coming to visit Ifa at home. The only time I met him was when I went to seek his permission to bring along Ifa to our family day trip last year. And even then, it was not at their home and we talked for less than a minute as he was purportedly in a hurry and all I wanted at that time was his OK for Ifa to join us. I didn’t want to discuss too many things at one go…

Of course, when the PLWHAs themselves don’t want their family members to know, we would not talk about HIV to their family members. Even if we visit, we’d just visit as friends, or when any form of help is given, it’d be under the pretext of helping single mothers or anything of that sort.

But while other family members do not know, spouses would be called to the HIV clinic for tests. However, some husbands simply refused to get tested. They’re just not bothered. To some, it’s better not to know than to find out they’re infected. Sometimes I’d talk to the husbands advising them to practice safe sex etc, they’d nod and nod as though they understood. Later I’d find out from their wives they still had unprotected sex. Hmmm… maybe the husbands nodded earlier because they were sleepy and not because they understood… oh boy…

Sometimes I do get calls from family members of PLWHAs who are not our clients. Somehow they’d get my number from our brochures or from MAC, and they start asking me all sorts of questions.

Once a lady staying in Ipoh called me to ask how she’d know if she had been infected. Initially I thought her husband was already infected. Then I found out that it was her husband’s 8 year old niece (who stayed in another state) who was just found to be infected and so this lady was afraid her husband may have been infected too because he was part of the family and he may have then passed the virus to her! Obviously she didn’t really know how HIV spreads. Or maybe she knew but she was just being paranoid because of her fear of HIV. There are other diseases which are more easily spread but it is HIV they fear more.

Then there was another lady who had a sister-in-law who was found to be HIV positive. This lady and her family planned to balik kampong to her husband’s family home where the sister-in-law was staying. The house was small and so when everybody balik kampong they would have to share the living room to sleep in. And so this lady’s family was afraid if her children especially would get infected. She didn’t want to stay at a hotel to “jaga hati” the family of her in-laws. So I was asked about the safety precautions she should take. To me the answer’s simple: just do whatever things they usually do without any fear of getting infected… unless of course they plan to have sex with the infected person… or plan to inject something into their own bloodstream using a needle shared with the infected person… or they plan to purposely cut themselves and then rub their wound against the infected person’s wound.

Now, what are the chances of those things to happen when you go back to your in-law’s house? Whatever your answer is, that's the chance of you getting infected.

21 comments:

J.T. said...

When HIV/AIDs was first reported - way back in the 80s, the news always sensationalised it around gays. If a man had that disease, then people would automatically think he's gay (movies about it did not help either). Most of the time they did not mention a man could have also been an intravenous drug user.

HIV/AIDS became a shameful thing.

Of course, if people do not want to be educated about it, they will still keep that pre-set mind.

It is sad to hear that in Africa, men with HIV/AIDS rape virgins. There is a myth that having sex with a virgin will cure them. What a load of *%$#. They refused to be educated. So these poor girls, some as young as toddlers, are now infected (that does not add to the physical and emotional destruction of the innocent).

I don't know if 100% of the world can be educated about it but at least, Pi, you are making a difference with a few - helping families understand the victims in their fold.

Pi Bani said...

Oh yes JT, you're right about the myth in Africa, about having sex with a virgin which is supposed to cure them. A load of crap indeed! Well, many things are still lacking over there... lack of education and worse still for the children, lack of access to treatment - particularly in Sub-Saharan Africa.

But here in Malaysia, sometimes even the highly educated people have that stigma against HIV/AIDS. As you said, it became a shameful thing. Like the welfare officer who came to give a talk to us volunteers on the various types of welfare aid available. He said that HIV was "penyakit sendiri cari". How did he think the children and most of the women got it? Sendiri cari? How?

Apandi said...

Pi, I can feel your frustration and what jt said about the virgin myth is really sickening. Yet at the same time, your last line tu seems really funny to me because it made me ponder those question...hmmm sex, needle, open wound. Kah kah kah, memacam senario can be created by my wicked mind.

Pi Bani said...

Apandi,
The last line was supposed to let readers ponder... but yeah, trust you and your overly creative mind to create all sorts of scenario. No, don't tell me what's playing in your mind... ;)

Kata Tak Nak said...

Please bear with me now I am being naive coz I have a question to ask. I have 2 cousins who died of AIDS. Both brothers were drug addicts. The 1st one died in the hospital. His body was taken home. Before the final rites, the cloth used to cover the body was taken away to be burnt. Is this procedurial or just paranoia. They said they were advised by the hospital authorities.

Pi Bani said...

KTN,
I too had some dissatisfaction when it came to procedures advised by the people from the health department who came to supervise when my clients died. Some of the things they do I saw as unnecessary. The one I saw they did not burn anything, but they buried all the clothings, making it obvious to all those who came for the funeral. Kot ye pun nak tanam, tanamlah belakang rumah, not in front where everybody could see!

Anyway, after that I got myself a copy of the latest procedures set by the Ministry of Health, just to be sure what the procedures are. They use the same procedures for all infectious diseases no matter how they spread, although in actual fact, HIV does not spread through clothings and the virus cannot survive outside the human body.

But even then, I didn't see anything in the procedures which says that the cloth used need to be burnt. Tanam pun tak. Rendam with clorox, yes.

Maybe they are still doing so sebab terikut-ikut with the old procedures, I don't know. Last time the procedures were even worst: they carried the jenazah ke kubur dalam plastic hitam tu and after that anything which had any contact with the body would be burnt. How long ago did your cousins die?

Raden Galoh said...

Pi... to change what people see, think and know about HIV ni payah eh...

Macam dah dalam dah stigma tu around us... But thankful that people like you come around and move it... God bless you, sis!

Pi Bani said...

RG,
To change whatever is already embedded in people's minds is not easy. I sendiri kalau dah believe in something all these years, suddenly someone tells me it's not true, won't be easy for me to believe this person. It will take lots of convincing. Bearing that in mind, kena sabar sikitlah to change people's mindset on HIV...

nyonyapenang said...

it's a long trudge.....

Pi Bani said...

Nyonya Penang,
It may be a long trudge, but it has to be done...

stand-up philosopher said...

Dear Pi,
I would react the same way as the families of some of the HIV victims you have mentioned. Its because of fear, ignorance, shame. We Malaysians are proud of our roots, culture, religion. We are proud of our children. And when we discover our beloved kid is infected with HIV, immediately we connect it to promiscous sex or drug abuse. We are unable to handle this. It will take time both for the victim as well as their families.
Yet Pi, i must applaud you for your work. Its brave and its noble. I hope I will always remember to pray for you so that you will have wisdom and strenght in this vocation of yours.

Pi Bani said...

SUP,
I think the biggest problem is shame. People don't want to be associated with anyone with HIV. So, when someone in the family gets infected, that someone has brought shame to the family. It doesn't matter if he/she got it not from his/her own doing.

It is easier to overcome fear than shame, isn't it?

loveujordan said...

Rasanya ramai ahli keluarga dan orang biasa terlalu takut dijangkiti penyakit ini yang tiada ubatnya..ianya dianggap terlalu jijik dan melibatkan maruah diri dan keluarga.... maklumat terawal semasa HIV mula diketahui ujudnya terlalu banyak kesangsian dan ketidakpastian..itu tak boleh ,ini tak boleh...apa yang orang kebanyakan tahu ...usah dekati dengan orang yang berpenyakit maut ini...I'm telling you the truth , I myself taktau macamana I akan react to any HIV/AIDS patient if I were to meet one...

Kata Tak Nak said...

My cousin died about 6 years ago. They even advise people not to touch the body. It goes against all that I have read about AIDs.

The family was very secretive about it all as if we can't put 2 and 2 together. Its the social stigma than comes with having a family member with AIDs.

In some countries, any new significant development is incorporated in school curricullums and syllabus. This should be the case here. AIDs being the menace that it is should be taught in schools, not just some 5 minute talk during assemblies or just pictures.

Recently we were asked to talk about dadah for 5 minutes during assembly everyday. What do you think would the reception to such a talk would be?

Pi Bani said...

LUJ,
Besar kemungkinan you memang dah pernah jumpa pun an HIV+ person, cuma you tak tau sebab they all look just like the rest of us. So you tak kisah sebab you tak tau. But the moment you find out they are HIV, suddenly rasa tak tau macam mana nak react, kan? So yes, it is the stigma.

Pi Bani said...

KTN,
The paranoia exist even amongst hospital staff. I don't know... sometimes the policy makers are saying something else but it doesn't seem to go to the ground level.

I personally have not only touched but hugged an HIV+ person. In fact one particular client I've had to help carry in my arms into my car because she was too weak to walk and the neighbours who knew she had HIV, although they symphatised, didn't dare come near to help me carry her.

Some schools have called us to give talks on HIV/AIDS. But there need to be follow ups. One off talks may not be as effective as we want them to be.

nurazzah8 said...

salam perkenalan,
satu pengalaman dan pengorbanan yg sgt besar u lakukan...syabas dan tahniah. I myself don't know whether I can do what you do...I envy org mcm u.

Pi Bani said...

Nurazzah8,
Kita buat sekadar yang kita mampu. You don't have to become a volunteer to help out... as long as you don't discriminate these unfortunate people, and you take the effort to know more about the disease, to me that's a good enough start.

Thanks for dropping by.

Apandi said...

Pi, tumpang lalu...

chikgu, careful with the daily talk about dadah for it might arouse curiosity instead. A lifetime ago, curiosity led me to experiment with many things...

Hazia said...

I know what u mean. 2 years ago, the hotel that I was attached to had a charity workshop for children with HIV.
I remember d Marketing Director had a tough time trying to explain to d department heads. D housekeeping head stressed that they only had 1 hour to spray d function room before it's used for another event.
During d workshop only did I realise that blood/cut on a HIV person can only infect u if u also happened to have a cut.

Pi Bani said...

Spray the function room?? Adooii... THAT bad, huh?