The following is a press statement issued by PositiveVoices.Net on Dec 1, 2009.
WORLD AIDS DAY: The prospect of living with HIV/AIDS is often thought to be a lonely and solitary road. Although advances in treatment and medication have resulted in HIV being classed as a manageable chronic condition, the sad truth is that many people living with HIV feel like they have no one to talk to. PositiveVoices.Net will offer HIV-positive gay men and transgender people their own social networking site built around their shared experience of living with HIV.
These feelings of isolation can be compounded for HIV-positive gay men, bisexual or other men-who-have-sex-with-men (MSM) who face “double stigma” because of their sexual orientation as well their HIV status. Many feel alienated even from their gay friends, leading to withdrawal and hopelessness. In some cases, this sense of isolation is a reason for not accessing treatment, care and support services, even when they are available.
In an effort to help positive gay men and MSM connect with one another and break down the barriers of isolation, a new multilingual social networking website will be launched in mid-2010 to provide a safe haven for the HIV-positive gay men and other MSM on the Internet.
PositiveVoices.Net will the first site of its kind to deliver an interactive “Web 2.0” experience and build a community of people living with HIV/AIDS (PLHA). Members will be able to share stories, find support, and gain confidence and empowerment as they navigate the complex road of living with HIV. The site will be launched in English, Chinese and Thai; other Asian languages will follow in a second phase.
The initiative, led by Fridae.com – Asia’s leading portal for the lesbian, gay, bisexual and transgender (LGBT) community – will address a need that has been largely unmet by existing services. “The Internet gives positive people everywhere a safe way to connect with other like-minded people while maintaining their privacy and anonymity,” explains Dr Stuart Koe, CEO of Fridae.com. “PositiveVoices.Net has the potential to transform lives simply by allowing them to tap into the shared wisdom and communal knowledge on living with HIV. You are no longer alone.”
The number of Asian Internet users who are MSM is estimated at around 32 million, with 15 million users in China, over 1 million in Japan and the Philippines and 600,000 in Thailand. These numbers are expected to grow exponentially as more people gain Internet access through their mobile phones.
At the same time, HIV is rising across Asia with gay men and MSM identified as one of populations most at-risk. Prevalence rates across Asian cities for this group ranges from almost 1% in Manila, 3 to 4% in Singapore and Hong Kong, to as high as 30% in Bangkok. Rates are feared to be much higher for the transgender community.
Reports presented at a recent high-level consultation on Asian MSM and HIV/AIDS, co-sponsored by the U.S Agency for International Aid (USAID) and the United Nations Development Program (UNDP) showed that despite the existence of basic support networks across the region the uptake of these services by HIV-positive MSM is well below expectation.
Prevailing stigma and discrimination, coupled with fears of “losing face”, pose significant barriers for HIV-positive MSM who may otherwise need help.
"HIV care and support is the missing link needed to build better prevention programs as well as better treatment outcomes,” says Dr. Cameron Wolf, Regional HIV/AIDS Technical Advisor - US Agency for International Development (USAID). “It's so exciting to see the Fridae.com team developing innovative ways to serve the community through PositiveVoices."
“There is renewed effort to address the needs of gay men, MSM and transgender people (TG) in relation to HIV/AIDS throughout the region. PositiveVoices.Net can play a significant role as part of a comprehensive mix of services for this community,” adds David Traynor from the Australian Federation of AIDS Organisations’ (AFAO) International Program. “We’re hopeful that this will lead to greater self-acceptance and empowerment of PLHIV across the region.”
PositiveVoices.Net’s mission is help its members make informed decisions about their health and well-being through peer-support in a safe and secure environment.
Members will be able to share experiences and read stories from other members through the +LifeMap, which is built on the premise that everyone living with HIV shares certain common milestones, such as being diagnosed, considering treatment initiation, telling a friend or loved one about their HIV status. A +LifeJournal will enable members to keep track of medication, doctor visits, lab results. Members will have access to a panel of experts, live chat tools and other features. Accurate information about the range of HIV-related services that exist in cities across Asia will also be provided.
“PositiveVoices.Net is a pioneering approach in the combat against HIV/AIDS in Asia,” says Stanley Wong, Manager of the Levi Strauss Foundation in the Asia-Pacific region. “We believe this project will undoubtedly be a catalyst for social change.”
***
PositiveVoices.Net is community initiative from the same team that brought you Fridae.com.
The project is funded with the support of the Australian Federation of AIDS Organisations (AFAO), the Levi Strauss Foundation (LSF) and the United States Agency for International Development (USAID).
PositiveVoices will be working in collaboration with Asia Pacific Network of People Living with HIV/AIDS (APN+) and Coalition of Asia Pacific Regional Networks on HIV/AIDS (Seven Sisters) as well as several other national and international HIV/AIDS organisations.
PositiveVoices.Net will be launched in mid-2010.
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Reader's Comments
I think the problems are especially acute for those of us who live outside our countries of citizenship and I would love to share and hear how others find their way through the minefield of rules and practices.
Knowing the discriminatory laws we face is not enough, we also need to know how things actually work. And, of course, we need to be responsible for making sure that HIV stops with those of us who have it. But that doesn't mean we don't have the right to travel and migrate just like everyone else.
I am really looking forward to this initiative.
Instead an HIV+ specific network can only conrtibute to the further isolation of people who really don't need to be seen as different, as needing "their" network. I really don't think it is the best way forward. We should come together and learn from each other to better understand, accept and support those most in need.
It is only with HIV+ people sharing their experience with HIV- that we will be able to create a welcoming and understanding community.
There is a role for more discussion on HIV issues on Fridae, and over time, more and more people are disclosing their status on Fridae. However, disclosure is still not 100% or anywhere close to it. While we work towards that ideal, it is necessary to create a "safe" space where HIV positive people can freely discuss and share their stories and experiences which they may not want to discuss with others.
Just like in a support group situation, only people who are in the same "boat" so to speak are included, onlookers or "gawkers" are not welcome. This is not a side show, but rather a space where peer support can be offered and found.
Meanwhile, we will continue to warm up the Fridae community to be inclusive - hence we are launching a "Living Together" campaign in the coming year - based on the Japanese concept of the same name. The idea is, "We are all already living together".
As more acceptance is offered on Fridae, and as more HIV positive people feel empowered through PositiveVoices, we hope that the paths of both will converge. This is something that needs multiple approaches and parallel processing to achieve.
1) the costs of treatments,
2) subsidies,
3) sources for funding,
4) addresses and phone numbers of clinics and counselling centres
5) job opportunities (employers who are willing to employ HIV-positive persons may advertise there)
6) supplements to take or avoid, and costs
7) Safer sex tips (between HIV-positive couples)
8) ads for those seeking HIV-positive partners
9) responsibilities and laws relevant to HIV-positive people in different countries
10) Support groups (e.g. those living in the Eastern part of Singapore who are HIV-positive may form a support group to provide moral support to one another)
First, if Fridae were to overly focus on HIV+ community's issues, it may not be relevant to the majority who are HIV-, and it may mislead the rest that Gay Community= HIV-Positive Community. It's a myth. The fact is the majority of gays are still HIV-. Fridae's segment should be the general gay community, and it's already in this correct direction. There is no need to shift its direction to focus on just HIV. There are many issues that concern the entire gay community generally that aren't HIV-related (though HIV is one issue): the arts, politics, lifestyle, literature, gay personalities.
Second, by creating a network specifically for HIV+, we can focus on those important issues that concern specifically them. Such a network can provide those info I listed above.
Third, we can also allocate more resources to HIV+ by creating such a network for them. The network can provide a higher level of personal services to each member relative to what each Fridae member generally receives. For example, the ratio of personal service (measured in time) to members (measured in the absolute number of members registered) of such a network can be higher. A counsellor could be hired to address their problems, providing such personal services.
Lastly, Fridae might consider validating the HIV+ status of the members. Members should have the option to choose to allow his pics and other personal info on his profile to be viewed only by validated HIV+ members. Other members who feel safe to disclose their HIV+ status to anyone could also select the option to reveal his pics and info in this manner. Any HIV+ person who wishes his status to be validated could do so via an accredited representative office in his country and submitting documentary proof. In this way, those HIV+ persons who feel safe only to disclose their status only to fellow HIV+ persons could have the option to do so.
It's also important for this website to comply with the legal requirements of all the Asian countries where it is recruiting and accepting members. It's illegal to reveal the identity of HIV+ people without their consent in some countries. So, the Registration Agreement should be drafted to protect Fridae from liability in this respect. It should state that by registering for membership a person understands and accepts that his stated HIV status and other personal information may be revealed to anyone who visits the website, and that Fridae cannot bear the responsibility for technical problems that lead to such personal information being revealed to third parties unintentionally.
The greatest potential advantages of having this website (I strongly praise Fridae for creating this for the HIV+, though the majority of us including myself who are HIV- won't use it):
1-It allows Fridae to target at a group, and allocate more resources to HIV+, who do need more resources;
2- It allows Fridae to understand this group's concerns better by encouraging them to voice out more freely in a safer envir;
3- It allows HIV+ to network with one another and discuss their unique probs with one another more freely;
4- It builds up HIV+'s confidence to come out (first to other fellow HIV+, then gradually to others also)
5- It allows gay HIV+ to see that HIV is NOT a gay disease bcos there're many members who're str8 (some have children who are HIV+ too, who are too young to register as member though)
6- It allows HIV policy-makers to understand the probs of HIV+ better
7- It allows policy-makers to engage HIV+ directly via a credible platform
8-It allows people who wish to support HIV+ (e.g. by providing employment, educational and business opportunities or other services) to communicate such offers
9) It allows older HIV+ to share their experience with, and encourage, newly infected HIV+
10) It allows counsellors of HIV+ to discuss issues concerning their profession, such as sharing how to support HIV+ people better via counselling or other means of assistance.
A MAN who is HIV-positive injected his wife with his blood while she slept, infecting her with the virus that causes AIDS. It seems he "wanted to give her the disease so she would have sex with him again", and "hoped it would prevent her from finding another man and leaving him".
http://www.smh.com.au/world/sleeping-woman-injected-with-hiv-20091205-kc01.html
It takes just one incident like this to arouse all kinds of dreadful nightmares about sharing a house with an HIV+ person.
Unfortunately the gay community pays the price for the transgressions of the straight community too. For example, while female rape continues to be on the rise in countries like India, with the age of the victim getting younger and younger, it is the gay community that is attacked for "lowering the morality of society".
But that is reality, and we have to live with it.
When we find ourselves HIV+, we expect our healthy friends and relatives to behave as if nothing has changed and that life just goes on. We will offer our hand to them, and expect them to shake it without flinching. We expect them to hug and kiss in greeting, just as usual, and that they turn off their "revulsion" switch that we expect is located conveniently somewhere on their body just for such occasions. Yes, they must locate and set that switch permanently to Off. We expect them to eat food we have cooked for them, share food off the same plate, and so on. All this so that our feelings don't get "hurt" or "trampled on" when we are "already down". (I am talking as if I am HIV+, but thankfully I am not.)
After living with our disease for a while, we get used to it. The terror is gone. We have crossed that dreaded barrier. That need not terrify us any more. It becomes a part of us, like a persistent and annoying itch that we learn to scratch absent-mindedly. Familiarity breeds contempt.
Maybe we should stop to think about it from the other side's point of view. For a healthy, HIV- person, that barrier still holds its dread, however much the HIV+ people themselves may be comfortable with it. Those people would rather not cross that barrier, if you don't mind. Thanks for the repeated warm invitations, but they'll take a rain check for now. Please don't expect them to take their empathy that far.
If you really want healthy people to accept you as normal, try to look at it from their point of view. And respect that view.
Imagine you are a healthy person living with a HIV+ person in your room/home. You are openminded and accepting, and do not view HIV+ people with revulsion. You have just this morning read the article in the Sydney Morning Herald (given above). Now it is night and you are trying to sleep, and in your stupor you think you hear a step outside your room. You sit up, terrified. Is that your HIV+ housemate, waiting with a blood-filled syringe? Should you scream? Should you look for a knife or some weapon?
Or, you wake up next morning with an itch on your arm. There's an angry red spot there. May be a mosquito bite. But your brain screams, was it HIM/HER with a needle? Should you get yourself tested? Oh GOD, your mother warned you to stay in a separate room and lock your door every night with a dead bolt. Is she going to scream, "I told you so" before cutting you off from her life?
Is this the state of mind which you want healthy people around you to have? Always on the edge?
HIV+ people complain that healthy people don't understand them and don't see things from the other point of view. Perhaps it is time that HIV+ people started seeing things from the healthy person's point of view. This kind of injecting is a BIG NO NO. That should be self evident. There's no use saying "It is only one case". It takes just one. How many would it take before we should start thinking or talking about it? We need to think about it from the freshly-infected woman's point of view, and talk about it too, and make sure no HIV+ person lets the rest of the community down in this way for such selfish reasons.
Frankly, I am determined that if I ever become HIV+ (which I don't intend to), I would never ever offer my hand to someone who I thought was HIV-. I would only accept their hand if they offered it first. Nor would I try to hug or touch them unless they did it first. I would want people to accept me in their hearts, not just go through the motions to assuage my delicate feelings. There is NO way I am going to expect, as my inviolable right, that others have to accept me as 100% normal and trustworthy. I would regard that as a callously selfish attitude on my part. Rather, I would hope to be able to win their trust through the right attitudes and conduct.
xoxoxoxo
ps: lets not stray from "empowering gay asia" ... and have silly gossipy articles anymore ... ... ... people go to thrashy columns and crappy magazines for those
ps: integrating (some) HIV + individuals (again) to mainstream is akin to that of GLBT's ... early on, we need specific channels that target a specific group eg. fridae vs us. No ? It would be hard to imagine posting a dating profile on a straight-majority site during the early stages of the internet. Without a "First Step" ... I doubt we would have
" Man / Woman " ... Looking for ... " Man / Woman "
best wishes!
ps: for the uninitiated, it would have otherwise been
Man ... Looking for ... Woman, or
Woman ... Looking for ... Man
ONLY
for those who are curious, worried, newly diagnosed, or having doubts, thebody.com is a great info-site for everyone ... bottom line, get tested regularly if you are sexually active, practice safe sex, stay monogamous ... if that is your thing, otherwise, protect yourself and your partner(s) ... have fun responsibly! and do treat others properly and appropriately, regardless of their HIV status! If you need counselling or help, please get in touch with PT (formerly Pink Triangle), or KLASS (Kuala Lumpur AIDS Support Services). Google them for addresses and phone numbers. Let me know if you need further information.
xoxoxo
Yong
ps: fridae, branching to and reaching out to the straight community ... that would be, integration of a HIGH order ... if not the highest! by then ... we would have broken down all walls ... and be a ... community!
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