The Power to Change is Within You: To Understand and Care for Another

Gen Pop Power to Change Posters@Roy

We’ve launched the first campaign to reduce the stigma faced by people living with HIV in Singapore for the people living with HIV. (Action for AIDS had launched the ‘Let’s Be Positive About People Living with HIV’ – the first campaign in Singapore to reduce stigma for Singaporeans) Someone asked me about my thoughts about the campaign, and I’ve decided to share them here.

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Q: Why do you take on this campaign?

A: I started this campaign because stigma is the one main reason that prevents people from coming into care. In fact, it’s the one main reason that many people do not protect themselves by using condoms and by going for HIV testing. And this doesn’t have to be. I’ve learnt personally that if I am able to refrain from absorbing the stigma that’s enacted on me, I would have the self belief and confidence to be true to myself, and be willing to go on in life, doing things to protect myself and what’s good for my body and my health. And so, I know this is possible – that it’s possible for people not to have to discriminate, if we are able to understand how everyone of us goes to through challenges in life and so we can learn that each of us have our own journeys to go through, and so we can empathise with that. Also, that it’s possible for us to be true to ourselves, and believe in ourselves and what we want to do, and pursue them, whether or not we are HIV positive.

And this is what I hope the campaign can achieve – that we also look beyond HIV as a disease but really, to look at it dynamically, from an all-round perspective to see how we can move along in our understanding, while learning about one another.

Q: What are the personal concerns you have when you put up your face for the PLHIV (people living with HIV) ?

A: I actually didn’t think too much about putting my face up. I think for the people who agreed to put their face up, they didn’t think too much as well. For all of us, we understand HIV well enough to know that if people discriminate or judge us, then that means that they need to learn more and give themselves the opportunity to find out more about HIV.

There are people who give me weird looks when they know that I’m the person in the poster. Someone asked me if I am HIV positive. All I said to him was – does it matter? Because truth is, does it matter whether or not I am HIV positive. And this is what we want to say. Whether you are HIV positive or not, the people in the poster have their positive characteristics and values which define them. HIV doesn’t define who they are. We make HIV define who they are. But to them, they are so much, so much more. And this is something we need to remember. Just as we do not want others to see us just as one part of who we are, we need to have the awareness to also respect others for that.

Also, for people living with HIV, this is to also remind them of the complete people that they are, and to remember their hopes and dreams and continue to pursue them, because whether or not they are HIV positive, they should live for their dreams, and for themselves.

Q: What has been the reaction, from the public, from PLHIV, friends and family?

A: My family has been ok. We haven’t really discussed it, because I’ve been working in HIV for 7 years. They would know better than to discriminate. I’ve taken opportunities to share with them about HIV.

Though after the campaign launched, I showed my dad the campaign booklet and he started asking me about the misconceptions that people have. So I had to let him know again that with medication, a person can continue to live a very long life – if you are diagnosed at 20, you can go on and live until 70 years or more, if you are on medication regularly. Also, you cannot be infected with HIV casually, and I always share with them how some of my closest friends are positive, and I continue to go out with them, share food with them and hug them.

And now that the campaign has been launched, this has also been what I’ve been sharing with the people I meet at our campaign exhibition.

Q: Why do PLHIV continue to be so hidden and invisible to the public’s eye?

A: Well, ‘stigma’ exists on many fronts – though I don’t like to use the word, “stigma”, as it is conceptual and too broad for understanding.

Firstly, generally, people do not have a good knowledge and understanding of HIV, so they continue to hold on to untrue ideas about HIV. This causes them to unnecessarily fear people living with HIV.
Also, our society holds on to many moral and judgmental values and thus we judge others according to these values. For example, we think that people who are gay or are sex workers are immoral. However, I’ve started sharing with people and asking them – do you know about the lives of these people and why they do certain things? Can we understand them enough to understand their reasons, before we judge them? One reason why people judge the people living with HIV is because we associate them with these ‘immoral’ values. But thing is, we haven’t even allowed ourselves to adequately understand the lives of these people, before we decide to enact judgement on them. If we do that, then we have to look at ourselves instead – why aren’t we looking at ourselves but at other people? Are we that good that we can judge others?

And this is what this campaign hopes to achieve – to also give us an insight into the lives of others, and of people living with HIV, so that we know – aren’t people living with HIV just like anyone of us?

For the people living with HIV, sometimes, because they think that people might stigmatise them, they choose not to ‘hide’ their HIV positive status because they think that people will judge negatively and they do not want to have to deal with that. But thing is, we haven’t even told others about our status, and we do not know how they will react. However, because of our preconceived fears, we choose to live without letting others know. There are times where people might judge, but there are times where they might not. But most importantly, however they choose to react, we need to always believe in ourselves and know that we are who we are. If others cannot accept, we have to let them go on their own course towards understanding, while we continue to believe in ourselves and who we are.

Q: Is coming out as PLHIV different from coming out as, say alcoholic, sexual deviant, mental illness? Why?

A: For me, the challenges that a person has to go through, learn to overcome them and then learn to become stronger, isn’t any different as compared to whether a person has to come to terms with being diagnosed with cancer, being involved in a car crash, being gay, being disabled or even failing your examinations or breaking up from a relationship. The medium and intensity might be different in each of these experiences but the process and learning is the same – it’s about us going through a challenge in life, as the many challenges that we go through in our life, learn to understand why they have to enter into our lives, how we can understand them better, learn to overcome them, and become a stronger person from there.

To me, the challenges are the same, so I think this is an opportunity for people to learn about themselves and to understand how they can do things better for themselves.

I do not see HIV as simply a health issues. In fact, for me, I feel it’s an opportunity for someone to stop and take stock of their lives, and decide for themselves where they want to go from here. If we can learn to be stronger and think in a happy way, we will be able to continue to live life in a fulfilled way – and this goes whether a person is HIV positive, or won first prize for Toto, broke a leg or became top in class. I think we need to have an awareness of how our lives work.

Q: You talk about changing mindset about HIV. How are you going to achieve that? What do you see, are the resistance in Singapore to you efforts?

A: In Singapore, I feel that many things are brushed under the carpet and not talked about, HIV being one of them. What compounds the issue is also that sex is not openly discussed. We hold on to too much ideas that it’s taboo to discuss about sex-related issues and we live our lives thinking that we need to be pious and saintly, only to realise late in our lives that we wished we had thought differently.

The one reason why HIV isn’t adequately discussed is because we tend to want to gloss over many issues and want things to appear pretty. It makes life easier. But it doesn’t. What makes life easier is when we have a good appreciation of issues, come face-to-face with them, face up to them earnestly and then continue to live our lives, with an open awareness and clarity.

For me, this isn’t an issue about HIV. It’s an issue about how honest and true we can be to ourselves, so that we can then have the clarity to look at and understand things, and eventually, be responsible for ourselves and our growth.

So, I wish that Singaporeans can have an open willingness to think expansively and to allow themselves to look and peer deeply into issues. When we have an awareness of things, we will be able to have a deeper understanding of anything that occurs in our lives. When we are able to do that, we will be able to think in ways that will empathise with others, because we know we go through the same life circumstances. Then we would stop judging when we know we judge out of an inner need, and when we face up to this inner need, we will move beyond judging others but embracing them for who they are. And loving them and one another.

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This campaign has just been launched at the Tan Tock Seng Hospital. The campaign exhibition runs until tomorrow, 14 December 2012, from 11am to 4pm.

You can also find out more about the campaign on the campaign website at www.ttsh.com.sg/powertochange.

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