“To sign or not to sign?”

That was a decision I was forced to make one early morning at a private hospital in Kuala Lumpur.

“I’m not signing. The hospital can go fuck itself!” My husband’s mind was made up even before I could blink my sleepy eyes twice.

For a brief second, I almost dismissed my husband’s reaction as a tad too melodramatic and was very close to signing what had already begun to threaten the tranquility of our rare morning together. But I didn’t.

I let out a big sigh and told the young woman at the front desk, “Sorry, I can’t sign this. We won’t consent to this.”

Once I had said it out loud, the look on her face told me that things were not going to be smooth for my husband and I that day. The wide eyes behind her glasses looked shocked, confused and uncomfortable. I might be biased but I thought she also reeked of judgment.

“I’m sorry but this is a hospital policy. You have to sign this if you want to get tested,” she said a bit too timidly. I don’t know how, but she seemed to sense that this would not go down well on us.

I looked at my husband, not as an attempt to persuade but for an affirmation of our decisions.

“Nope. I’m not going to sign.” He walked away to signal his unwillingness to waste any more time on this matter.

I let out another big sigh as I found myself losing patience too.

“Look, we have no problem signing a consent form for HIV testing but we do have a problem with this clause here. See? It says, if tested positive, you guys will be notifying the Government Authorities,” I explained.

“But this is the law,” she tried to convince me.

So if the law requires you to jump off the Penang Bridge, you would?

I rolled my eyes and sighed again.

“I know but we don’t agree with this law. So we’re not going to consent as a sign of our protest,” I said instead.

We were then told to wait at the lounge while she consulted her manager.

After ten minutes, an older woman came and asked to speak to me privately. She ushered me to the corner of the room and said to me in a low voice, “M’am, your medical package includes HIV screening. We’re not sure whether it is possible for us to exclude this testing.”

I stared her. It was my turn to look shocked, confused, uncomfortable and judgmental. By then my patience had hit a record low and I couldn’t help myself but to retaliate in full force.

I can’t remember what I had told her precisely but I surprised myself that day for being eloquent as I made my case. The conviction and anger inside me helped me to articulate my argument to her and in summary, I told her that nobody could force my husband and I to test for HIV/AIDS.

“Of course, of course. You’re right. Let me go and check with the company who offered you the package to confirm that it’s OK for you to go through the check-up today without the test.”

My husband looked defeated. He was convinced that we were not going to have our routine medical check-up that day. In a determined voice, I said to him, “If she comes back and tells us no, I swear I’m going to give them hell.”

After waiting for another 15 minutes, hell remained mine.

For close to ten years, my husband and I had gone through routine HIV tests annually. In fact, before we had our first sexual intercourse, we had ourselves tested. This is how strongly we feel about protecting each other from HIV/AIDS. The episode above was the first time that we had actually skipped a HIV test.

Many of you may wonder why we had made such a ruckus over this.

I had recently learned from a friend that testicular cancer is apparently rather common amongst Canadian adolescents. According to her, because most adolescents are embarrassed to talk about their private parts, many choose to remain silent when they feel an abnormal growth on their testicles. By the time they decide to seek treatment, the cancer has already advanced considerably.

I suppose the same principle applies here, except multiplied by ten because of the stigma HIV/AIDS carries. Because of our strong fear of stigmatisation, we would rather not get ourselves tested. Because of the lack of information, we are not sure what the Government Authorities would do with our medical record. In the meantime, the hospital did nothing to help us understand the procedure of HIV disclosure. If anything, the hospital did everything wrong that day to gain our trust. This problem could have been potentially solved by sound public relations and communications practices but instead, the hospital staff made us felt like we were the enemy.

When I first saw that young woman’s reaction when we declined to sign the consent form, and her subsequent looks after that, I knew that I had made the right choice not to sign the paper. She carried a look that spelled, “They have AIDS. That’s why they’re not signing the paper.” She was very awkward with us. She would tense up whenever we appeared before her. When we went to collect our test results a week later, we felt unwelcomed. The doctor who went through our report dismissed me when I told him that I thought I felt a lump on my neck. He did not even feel my neck. He behaved as if he couldn’t wait to get rid of us.

Act 342, Section 10 (2) is the clause that compels every medical practitioner to notify the government authorities if he/she is aware of the existence of any infectious disease. Under the same section, it also compels anyone, other than a medical practitioner, to do the same. This means, if I know my work colleague has HIV/AIDS, I must report this to the authorities.

In the United Kingdom, the General Medical Council states that a disclosure of HIV positive patient to anyone other than a healthcare professional is unlawful. Their Data Protection Act provides legal redress to people living with HIV/AIDS if their confidentiality rights have been breached. In Malaysia, there is no such law yet unless the personal data is used for commercial purposes.

In the United States of America, hospitals do report to the US Centres for Disease Control and Prevention, but only after they have removed all personal information from the patient’s record. This is mainly because the federal and state funding for HIV/AIDS is often targeted at areas where the epidemic is strongest.

An American survey revealed that one-third of 20,000 respondents knew at least one person who is afraid to take HIV test for fear of prosecution if they are tested positive. More than 60% of Americans do not know whether their state has a HIV specific disclosure law. Accordingly, many people at risk may prefer not to get tested for HIV rather than risk being accused of or criminally charged for non-disclosure if they are tested positive. In a similar survey, when asked what motivated people to disclose their condition, majority of them cited moral or ethical reasons; honesty, love, desire to protect their loved ones. Less than 1% said that the law is the primary motivation.

All these studies point to the understanding that having a disclosure law such as the Act 342, Section 10, does not help to reduce the risk of HIV/AIDS. On the contrary, it has significant repercussions because it stops people like my husband and I from getting tested and seeking appropriate treatment once diagnosed.

Driven by curiosity, I called two organisations* relevant to this subject matter for more information. I could not get through one but the other told me that I could get an anonymous HIV test for free.

“Total anonymity? How come the law doesn’t apply to you guys?”

“That’s because we’re an NGO. There are a couple of NGOs around that do anonymous testing. Do drop by and get yourself tested. It’s important.”

Free anonymous testing with an NGO versus a private hospital that doesn’t seem to give a toss, it’s a no brainer really who will have a more successful campaign against the spread of HIV/AIDS.

* The identities of the organisations have been deliberately kept confidential to avoid getting them into trouble with the authorities.

This article was first published on The Malaysian Insider on 5 March 2013.

It generated quite a bit of discussion on a friend’s Facebook. According to this friend, the local NGOs are not exempted from reporting to the Government Authorities if you’re tested positive for HIV. He also left a comment on my Facebook and here’s what he said:

“Also, at the NGO, you are testing live with a person, who then gives you the result. You are no longer anonymous to him. Some people don't go to such NGOs because they may know people from the community who are volunteers at the NGO. So actually, this creates a different problem. People who would go for such testing in spite of the social barriers (being recognised, reporting, etc) are already monitoring their sexual health -- even if some do test positive eventually. The problem is getting people for whom the lack of anonymity prove a deterrent. Some people also have to overcome the guilt of being judged for being irresponsible at such an NGO as these NGOs have been aggressive in promoting Safe Sex messages with moralistic overtones (you are irresponsible if you don't use condom, you are a slut if you have multiple sexual partners, etc). It is a lot to overcome for most people. In Taiwan, their anonymous testing works like this: you get your blood taken for testing and you are given a code and a phone number to call; you call the number and tell them your code and you get your result without needing to reveal your name at all.”

Another person left a comment on this article:

“As a matter of fact[ly], both Malaysian and Singaporean law requires medical practitioners to report patients tested positive for HIV. Both deport and ban entry to foreigners if tested positive while in the country.”

Technorati Tags: HIV/AIDS disclosure law,anonymous HIV testing,stigmatisation facing people living with HIV/AIDS,Act 342 Section 10,Act 342 Section 10(2),US Centres for Disease Control,General Medical Council,United Kingdom

From LoyarBurok: Two Women, Two Tribes and a Journey of a Lifetime [Part V]

Two Women, Two Tribes, and a Journey of a Lifetime is a 9-part series penned by Lim Ka Eaabout her one year stint in Addis Ababa, Ethiopia where she accompanied her husband on his 9th humanitarian mission. No stranger to travel and humanitarian missions herself, she learned that Ethiopia is not really Africa and Africa is not really all about national parks or long distance-runners. She also learned that being a "tai-tai" is so overrated unless there is another "tai-tai" to get into mischief with. This 9-parter tells the story of how two "tai-tais" explored Ethiopia and discovered their life as both an individual and a woman. This weekly series started with Part I: My first encounter with Africa, Part II: The faces, sounds and smell of Addis Ababa, Part III: The gift of a kindred spirit and Part IV: Getting in synch with nature.

Part V – Hardships and friendship

I’ve never really told Irada how I felt about this because at some level, I understand that a photographer has to take certain risks in order to capture that rare moment. Jalalem, on the other hand, was not as understanding. He was very much annoyed by our behaviour and possibly perceived them as parsimonious.  In the beginning, Jalalem would often ignore Irada’s urgent signal to stop the car when she saw something photo-worthy. We didn’t know whether it was his lack of urgency, understanding of English or he simply established that if we were not going to pay, he was not going to bother stopping.

My own frustration was of a completely different nature. It was extremely challenging for me to try to understand things in order to document our journey. Despite the fact that talking is free of charge here, it was difficult to communicate with some of the people we met since we did not have a translator. I am sceptical as to the accuracy of what had been translated to me by Jalalem and other local people who speak very little English.

In addition to this, the local women are often shy, possibly exacerbated by very low level of education and exposure to the outside world. They hardly spoke a word to us which made it even more difficult to interview them. If this was not the case, then very often, men spoke on behalf of them. Some women even shied away from being photographed although I would still approach them to talk to them. I had to raise both arms up with my palms wide open to reassure them that I had no camera with me.

Closer to the end of our trip, we finally established a better rapport and understanding with Jalalem. He provided us with some useful hints to facilitate our mission. He taught us the local tribal word, Jaala which means “friend”,  as a form of greeting, indicating friendship and solidarity. From then onwards, we could not stop screaming Jaala! Jaala! at almost everyone we saw on the way, much to their amusement but to Jalalem’s mortification. He also helped us to trade pictures for candies but this usually worked with children only.

Water and women – the vital sources of life

We were very often chased by half naked children in need of a good scrub, after our car and surprisingly with great speed. Their agility  and athleticism were only matched by their vocal chord as they screamed Highland! Highland! which to the unfamiliar ears, sounded like Thailand. Perhaps that is one of the reasons why Ethiopia has such a big pool of great runners.

Some boys even tried to attract our attention by doing a sort of local dance consisting of jumping jacks executed from a squatting position.  Trust me, it didn’t look easy and the Russians may be able to learn a thing or two from these boys. We later learned that due to the scarcity of water, empty plastic bottles or “Highland”, named after one of the popular local brands of bottled water, are in high demand in almost every part of the country. They are used to collect water from the river or even puddles of muddy water left behind by the rain. Forlorn-looking donkeys, used as mobile water tanks, were seen carrying bright yellow plastic jerry cans filled with water.

Local women are a vital source of life, not only because they are mothers, they are also responsible for the difficult task of collecting water. Almost throughout the whole journey, women are often seen walking for miles in order to reach water points or rivers, which are often completely dried up. Each woman, with a 20-litre jerry can strapped onto their backs, some pregnant and some riped with old age, take their task seriously as they often risk sexual harassment due to long distance of isolated paths taken to reach the water source. Humanitarian organisations have often tried to make sure that new water wells are being constructed as close as possible to their homes in order to avoid such risk.

It is heart wrenching to think that many of these pregnant women probably risk losing their unborn babies and some even their lives while delivering, due to such harsh condition. Reliable statistics have shown that the neo-natal mortality rate in Ethiopia is as high as 51 per 1,000 live births and the maternal mortality rate is at 720 per 100,000 live births.

Many women also suffer from gradual distortion of their backs due to the burden of such brutal weight. We had seen some elderly women walking and bearing the cruelty of life, with their backs bent forward permanently to almost a ninety-degree.

For many of us who never have to submit to such hardship, it boggles the mind to see how many of them could still muster a beautiful smile which weighed more than the weight they carry on their back by a million times.

Arba Minch – “It’s a good sign”

We finally reached Arba Minch at around 4:30pm. Elevated at around 1,600m, it provides a spectacular view of the Rift Valley and nearby lakes from above. The largest city in the south-western part of Ethiopia, Arba Minch, means forty springs in Amharic, is indeed more developed and sophisticated than other places we have been outside the capital. It is well-known for three things, Nechisar National Park, Lake Abaya and Lake Chamo.

Our first experience with Lake Abaya and Chamo were truly magical. The lakes are divided by Nechisar National Park in the middle, also named fondly as the Bridge of Heaven, provides a startling contrast between the salmon pinkish water of Lake Abaya and the clear blue water of Chamo. The former’s water colour is a result of elevated natural concentration of suspended ferrous hydroxide.

What further amazed us was a rainbow, perfect in its shape, size and colour, arching over the lakes from one end to the other. If heaven really exists, then this was how I would have imagined it. Irada, who was previously apprehensive about her ability to obtain good photographs, told me that the rainbow was a good sign. She once gave me a brief lesson in photography and as I remember it well, she told me that to take a fantastic photograph, it often depends on three things; luck, lighting and composition. Anyone can hone the necessary skills or techniques to become a photographer but without luck, even the best photographers will not be able to secure an outstanding photograph. To her, it was purely luck that we had arrived in Arba Minch with this rare gift of a magnificent view.

After being deprived of fresh seafood in Addis Ababa, we feasted on grilled tilapias caught from the lakes. Nothing had ever tasted so good throughout the time I had spent in Addis Ababa. The fact that we were both starving could also be a contributing factor. The beers were nicely chilled and hence provided us with a delightful change from the often lukewarm beers in Addis Ababa due to the power cut.

By 8 pm, we were both sitting in our hotel room, completely bored and missing our family back in Addis Ababa. With no television or radio to provide us with some entertainment, we were engulfed in the complete stillness and silence of the night. With our 5 litres of untouched white wine staring at us from above a cabinet, we unanimously decided to drown our boredom in some alcohol. After several cups of bottoms up, we settled into bed early that night, exhausted but exhilarated at the same time after all the excitement in one day. Perhaps it was the white wine finally working its way through our system. Whatever it was, we sighed in contentment as we turned off the lights and bid each other goodnight.

As I closed my eyes, I thought about our impending camping trip at the Mago National Park with slight trepidation. I think what had worried me most about the journey was the constant warning of the threat of Sleeping Sickness caused by Tsetse flies in Mago. Once bitten, it apparently results in instant coma. But as I finally dozed off, I heard the echo of Irada’s voice saying, “It’s a good sign.” I thought, if the appearance of a rainbow could provide luck to a photographer, I hope it would provide the same for two women at Mago National Park.

Next: Part VI – Our first sighting of a local traditional tribe

Ka Ea used to be a globe trotter. She has lived in Timor Leste and Afghanistan while working as a civic education and human rights officers for the United Nations. She then tried to be a full time housewife in Ethiopia and Cambodia but failed miserably. Now, she works with lawyers and human rights activists by day and watches Discovery Travel & Living by night. She writes for The Malaysian Insider during her dwindling free time. She longs for the day when someone would pay her to travel, eat and write.

Irada Humbatova was born in Azerbaijan’s capital Baku on 12 July 1974. She trained and worked as a midwife from 1994 to 1997, later assisting the International Federation of the Red Cross/Red Crescent with maternal health work by training and supporting traditional birth attendants in rural areas. Since then she has followed her husband on Red Cross missions around the world, developing her love for photography into a passion and profession. Inspired by Africa’s immense beauty and its people’s suffering she moved from art photography to photojournalism. She has since grown to become Reuters’ stringer for Ethiopia and work on assignments for other news outlets and magazines. Irada is currently back in Baku continuing her work with Reuters. She contributes most of the photographs in this series.

Technorati Tags: Irada Humbatova,Ethiopia,Arba Minch,Nechisar National Park,Lake Abaya,Lake Chamo,Bridge of Heaven,Mago National Park,Tsetse flies,Sleeping Sickness,Reuters,Lim Ka Ea

The Breakup

I was promiscuous, lackadaisical and non-committal. She was needy, pushy and manipulative.

I secretly think all she really cares about is money.

It wasn’t until a couple of months later from the day we first met that it became clear we had very different expectations. Our relationship was making me unhappy but I stayed on by holding her to her promise that she knew how to make a woman feels and looks good.

Needless to say, I subsequently took a distance from her. The phone calls kept coming and I began to lie. The excuses were always the same. I was busy and I would see her another time.

I suppose it was bound to happen although I didn’t think she saw it coming. She probably thought I didn’t have the galls but I finally pulled the plug and it’s over.

I am relieved.

The relationship started more than six years ago. I had received a birthday card with a gift voucher insert from my bank. It said in Calibri font-sized 11, as a valued customer, I was entitled to a spa treatment worth RM250.

It was irresistible and before I knew it, one thing had led to another.

Like most first dates, I was treated like a queen worthy of the best treatment. I was pampered and I left feeling good but not before being seduced into signing a contract for another six treatments at a discounted rate. I was told that the special rate would no longer be valid the day after, that I simply must seize this purportedly rare opportunity. Being a sucker for big discounts, I caved without knowing that it would become her regular pick-up line, usually right before my contract ended.

At this point, I should confess that the climax of our dates were good, just not the foreplay. All treatments were accompanied by the customary marketing pitch and they usually began as soon as I shut my eyes in a silent hope of a much needed 2-hour relaxation and quiet. The beauticians had a militant way about them. No matter what the condition of my skin was, there was always something to improve and they never fail to offer solutions. If only they could apply their resourcefulness on achieving world peace.

While she spoke of how treatment A would add benefit to treatment B and how treatment C would benefit more from treatment D, I would often let out an incoherent and non-committal grunt and willed her to stop.

I mentally listed the number of things I would tell her:

1. I did not pay money to be harassed;
2. You have no right to push your products on me without an invitation, not especially when I’m in that sacred horizontal position;
3. You should stop playing elevator music because it shows a lack of taste and class;
4. You should learn to tip-toe and whisper because silence is what I expect;
5. If you value my patronage, just shut up and only do what I’ve paid you to do.

These thoughts were never shared as I feared that if I had unleashed them, we would end up in a war zone since I’m not the most diplomatic person in the world after all. She saw that weakness and used it to her advantage. I ended up signing for more treatments I didn’t care for. It was a huge price to pay just to avoid ugly confrontation and very bad services.

That was when the unhappiness began. I was often doused in shame and guilt for being a complete push-over. It came to a point when our meetings became something I dreaded.

Soon enough, I began to see other people. The temptation was way too much. With great discounts from a wide range of spas from Groupon, what is a girl to do?!

Unsurprisingly, they were usually the same. Thankfully, I had learned my lesson and was able to make it clear from the beginning that I am not the committing kind, especially if they’re the pushy and manipulative type.

After more than six years, I finally met the one. She is kind, not intrusive and respectful. She understands my needs and gives me what I want. We have real conversations. She talked about how she couldn’t wait to leave the establishment and she wants to make it on her own. She’ll be offering her services from her humble home she shares with her elderly parents. I like a girl with ambitions and I like the thought that she’ll be keeping the money I pay all to herself. She deserves it after all and she wouldn’t need to push so hard like the other girls.

So last week, I finally told her that I will be leaving the country in September. I won’t be seeing her anymore. The distance would make it impossible for me to commit. It was a lie but most breakups are never honest anyway.

From the look on her face, I could see she was unhappy. She tried her best to persuade me to make the most of my remaining stay by seeing her more often. I said no with a smug smile, secretly hoping that she knew I was lying.

Breakups are never easy but sometimes, a girl needs to learn how to say no. Politeness and civility are not an option, not especially when the lying starts.

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