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Monday 2 February 2009

To disclose or not to disclose

I was hopping around over the weekend.

No, not the kind of hopping which would help burn the calories.

And no, since I’m not a member of any political parties, I didn’t hop from one party to another either. You didn’t expect me to post something about the current political drama in my home state, did you? No-sir-ree… not my cup of tea!

I’m just an ordinary blogger who hops from one blog to another. Ah yes, I was only blog-hopping.

I was actually looking around for comments by ordinary people on the issue of HIV/AIDS. Various issues seemed to have been brought up – the issue of pre-marital mandatory HIV testing for Muslims, the issue of whether to disclose or not to disclose to family members, the issue of how people would react when they find out of someone they know being HIV infected etc.

The mandatory testing came about most probably because of the increase in the percentage of women being HIV infected. Since most of these women got the virus from their husbands, I suppose the authorities figured that mandatory testing before marriage would solve or minimize the problem.

If you ask me, I doubt mandatory testing would help much to reduce the percentage of women getting infected. In the cases that I’ve personally been handling where the women got the virus from their husbands, the husbands themselves were only infected after they got married. They either became IVDUs after marriage, or they got involved in extra-marital sex. Women like Nuri, Lily, Rina, Maria, Sha, Jah, Shila, Fuzi, Yah, Hana, Wani and Asiah were all only infected during the later part of their marriage, after a few children down the line.

To me, what is more important for couples before marriage, whether or not they are HIV infected, is to be equipped with enough knowledge – the do’s and don’ts of HIV/AIDS, how not to expose themselves to infection, how to practice safe sex, etc. And after all the explanation, encourage them to get tested – with the results only made known to the couple and it is up to them if they want to inform anybody else. They are the ones getting married anyway. Ah well, I’m sure people will still argue on this issue, so let’s get on to another issue resulting from the first issue – from the perspective of PLHIVs who want to get married.

As you can read in an example here, pre-marital mandatory testing involves the risk of too many people finding out about the HIV status of the couple – and that would result in all sorts of hoo-hah, not from the couples themselves, but from immediate families and sometimes other suku-sakat kaum-kerabat.

There were even suggestions that those with HIV need to be isolated from the rest of us. You really think that would help?

What happens next if the HIV couples still want to get married and want to avoid all the hoo-hah? They may:
- Go across the border and get married there. Ku pinang-pinang tak dapat, ku pujuk-pujuk ku bawa lari. And if the marriage doesn’t get registered in Malaysia, the wife may face all sorts of trouble later on like in Fuzi’s case.
- Since it’s so difficult to get married, forget the hassle of getting married. Just have sex as and when they like. Muda hanya sekali, so they say, so enjoy life while they can. They are still young, and they only think of the short term.

I read a comment somewhere that maybe to lessen the stigma and discrimination; the PLHIVs themselves need to be more open. Just act as though there’s nothing – it’s JUST HIV! Why can’t they just tell the whole truth to their family members? They can’t be sure how their family members would react unless and until they are told. The family members may be supportive, who knows. Right? Right?

Naaah… not that simple. What happens if the family members are not supportive at all?Let’s just take a few real life examples.

Nuri once went with her mother-in-law to attend a funeral of a kampong-folk. There were sok-sek-sok-sek during the funeral that the guy died of AIDS. On their way home after the funeral, the MIL said to Nuri, “Hish! Mak tak boleh terima kalau ada keluarga kita yang ada AIDS.” She of course was not aware that her son too had died of AIDS-related illnesses. So, how can we expect Nuri to disclose the fact to her MIL?

Then there was another PLHIV who went shopping with his father, and they came across this bundle shop selling used-clothes. The father refused to buy from that shop because he feared the clothes may have been worn before by HIV-infected people. Although the virus is not airborne, the fear is nevertheless still there. So, how lah the son wants to tell his father?

And quite frankly, as long as there are still people out there who think that HIV-infected people need to be isolated, I doubt the PLHIVs will ever open up. In fact, we may end up with more unreported HIV cases.

Anyway, if someone close to you discloses to you that he/she has HIV, what would YOUR reaction be?


13 comments:

mamasita said...

Hai Pi,
tak terjawab..terlalu takut! Taknak even think about it.May ALLAH protect us all.

Kak Teh said...

PI Bani, prevention is still better than cure. and the reach out campaign should be more effective. I know that its near impossible to reach all, but people need to be shocked into realising the dangers of Aids.Kan?

Pi Bani said...

Mamasita,
Ha, tu lah pasal those infected don't want to disclose their HIV status even to family members.


Kak Teh,
Yes, definitely prevention is better than cure. And the campaigns nak kena lah pakai psychology sikit. Simply coming up rules and regulations won't solve the problem. Macam jugaklah kempen lain-lain tu - kalau sekadar melarang based on authority (because I say so), tak jalanlah. That's why where you see signboards saying "Dilarang membuang sampah di sini", that's where you will find loads of rubbish!

ray said...

Komen Pak Malim kucing ray yg alim.

Susah nak cakap tentang reaksi, kata Pak Malim sambil memakai baju seksi. Sebab belum pernah mengalaminya, kata Singa Narnia. Tapi saya fikir, setiap orang yg bakal mendirikan rumah tangga, berhak mengetahui status kesihatan bakal pasangannya, sebagai satu hak asasi, kata Pak Malim yg perasan seksi.

Pi Bani said...

Pak Malim,
Memang setiap orang berhak mengetahui status bakal pasangan, dan itu tak menjadi soal di sini, kata Pi anak Pak Bani. Masalahnya ialah dalam mandatory testing terlalu banyak pihak yang terlibat, kata Pi Bani sambil merembat. Cukuplah sekadar pasangan masing2 yang mengetahui dan biarlah pasangan yang buat keputusan dengan mendapat nasihat dari orang yang dipercayai sahaja, kata Pi Bani sambil mengelap meja. Saya khuatir apabila prosedur terlalu ketat, pemikiran pula singkat, nak kawin tapi tak dapat, gejala lain pula yang meningkat.

Anonymous said...

Dear Pi,
Tahun 1990 dulu seorang kawan K. Tina meninggal kena Aids. Husband dialah punya angkara. Keparat tu mampus dulu. Sampai hari ni K. Tina menyesal sebab tak more understanding. Bila dia beritahu kami, kawan-kawan 'rapatnya', ada di antara kami, termasuklah K. Tina, menjauhkan diri. Masa tu semua 'bangang' lagi soal Aids. Bila dah tau/tengok apa akibat Aids ni, nak kencing kat public toilet pun takut. Sanggup tahan kencing dan bawa kereta laju-laju balik rumah. Kak, kah, kah.. kelakar kan. Anyway, kawan ni meninggal di hospital. Dah siap mandikan baru bawa balik rumah untuk kebumi. In the end, selain dari kami, kawan-kawan dia, cuma Mak-Bapak, MIL/FIL dan adik-beradik dia aje yang tau dia ada Aids. Yang sedih, MIL dia sampai kawan ni dah meninggal pun masih tuduh kawan ni yang jahat, bukan anak dia yang sundal. Di pendekkan cerita, tak ada satu pun keluarga sebelah dia atau sebelah MIL dia nak bela anak-anak dia (3) sebab takut bebudak tu bawa kuman Aids. Tapi ada hamba Allah ni, kawan kami juga, ambil bebudak tu buat anak angkat. Kami, kengkawan yang lain ni, cuma sumbang RM mana mampu tiap-tiap bulan. Kawan yang bela bebudak tu sampai sekarang tak kahwin. Boyfriend dia dulu pun jahil macam kami jugak. Dia orang perang besar, kalah perang Sabil, bila kawan kami tu decide nak bela bebudak tu. Tapi itu tak kisahlah. Yang paling sedih bila kawan kami tu bawa bebudak tu rumah nenek dia orang (the MIL) untuk raya, orang tua tu 'haramkan' bebudak tu jejak rumah dia. Sedihnya. Sekarang bebudak tu dah besar-besar dan dah bekerja ramai lak suku-sakat mengaku sedara. Kejahilan memang memudaratkan. K. Tina memang sokong sangat kalau ada kempen 'mencelikkan mata' kami yang jahil ni. Tak lah budak-budak jadi mangsa.

K. Tina

Pi Bani said...

K.Tina,
Nasib baiklah masa you dok pecut kereta nak kencing kat rumah tu, tak kena tahan dek polis pasal speeding kan? Tak pasal je terkencing depan polis tu... hehehe...

Anyway, thanks for sharing the story. Tak pasal-pasal budak-budak tu jadi mangsa. Alhamdulillah ada hamba Allah yang kesian and sanggup ambil budak-budak tu despite all the stigma. May Allah bless her (and you and your friends too for contributing the RMs). Harap-harap semakin ramailah yang dah celik mata sikit bab-bab HIV ni - janganlah ada lagi yang mencadangkan depa ni dipulau.

Anonymous said...

allah telah memberi amaran
tetapi kita tidak mengendahkannya
jadi ... bila nasik dah jadi bubur ... kita lah jugak kena pastikan bubur tu sedap dan boleh dimakan
alangkah bagusnya masa memasak nasik tadi kita pastikan sukatan airnya yang betul kan?

tapi ... bagi sesetengah orang ... sekarang bukan masanya nak berhujah tentang apa yang boleh dan apa yang DILARANG dalam agama
jadi ... macam mana?

alangkah indahnya kalau kita berbalik kepada suruhan-Nya :)

no pun intended to any one in particular
just a mindless thought from an immature mind

Pi Bani said...

Anonymous,
Sesungguhnya Allah telah memberi amaran, tapi jangan kita lupa Allah juga maha pengampun. Setiap manusia melakukan kesilapan. Sesetengah manusia melakukan kesilapan yang agak besar - terjebak di dalam maksiat hingga akhirnya termengandung, terjangkit penyakit HIV dan sebagainya - perkara-perkara yang dihina masyarakat sekeliling walaupun mungkin kesilapan itu berpunca dari masyarakat sendiri. Mungkin itu boleh dianggap balasan Tuhan - balasan itu kadang2 datangnya kepada diri sendiri, kadang2 kepada orang yang disayangi (seperti anak isteri yang tidak bersalah). Atau mungkin juga penyakit itu sebagai kifarah bagi mengampunkan dosa-dosa lalu.

Namun sebagai manusia, bukanlah tugas kita untuk menghakimi. Biarlah hanya Allah sahaja yang mengadili dan menghakimi. Tugas kita sebagai khalifah di muka bumi ini adalah untuk MEMBIMBING mereka yang telah lari dari jalan yang diredhai. Membimbing bukan dengan jalan menghukum, tetapi dengan cara berhikmah, dengan memberikan kasih sayang dan menunjukkan kepada mereka keindahan Islam itu sendiri.

Jika kita menganggap bala yang menimpa mereka itu adalah atas kesilapan mereka sendiri, lalu kita mengambil sikap "padan muka" dan seterusnya kita meminggirkan mereka, dan akibatnya mereka sesat lebih jauh, kita juga nanti akan disoal di akhirat kerana gagal menjalankan tanggungjawab kita.

Sheisawesome said...

I will try not to be freak out at the first place, tell them everything will be alright (cheh wah, cakap jer senang) but I read a lot of information about HIV/AIDS and thanks to my best friend who works as nurse. So let's stop this stigma ya!

Pi Bani said...

LaiPing,
Yayyy! Good for you! Yes, when you get all the correct information you won't freak out.

Salt N Turmeric said...

Pi, sedih baca comment K.Tina di atas tu. I dont understand grandparents yg salahkan their grandkids yg tak buat apa2 tu. Kalau ye pun parents diorang salah, salahkan lah diorang not the kids. Furthermore, kalau nak marah sgt, kenapa tak marah diri sendiri dulu sbb gagal jaga anak2. This kalau ikut the mentality of the grandparents lah kan.

On your question tu, nauzubillah lah. But if it's a friend or someone close, id come to you for advice on what to do. ;) But kalau cik abang, kena siasat camne dia dpt.

Pi Bani said...

Farina,
Memang sedih baca pasal the children yang K.Tina cerita tu. Itulah dia, stigma punya pasal sampai anak-anak yang tak bersalah pun kena discriminate.