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Inclusive responses to HIV needed – Bahaghari Center

For Disney Aguila, board member of Bahaghari Center, “it needs to be emphasized – particularly today as #WAD2019 – that HIV can only truly be dealt with if everyone is on board.”

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In early 2019, Jay (not his real name), a Deaf gay man who lives outside Metro Manila, was encouraged by his friends who knew community-based HIV screening (CBS) to get himself tested. It was, he recalled, “the first time someone offered me this service; so I caved in.”

Jay was reactive; and “my world crumbled,” he said.

Though his friends tried to comfort him, telling him that knowing his status is good, “since at least now I can take steps to get treatment and live a normal, healthy life,” Jay wasn’t assuaged. His friends had to eventually go back to Metro Manila, and he worried that he would be left on his own to “find ways to access treatment.” And the same issue that did not make testing accessible for him – i.e. him being Deaf – is now the same issue he believed would hinder him from getting treatment, care and support (TCS).

Jay’s case, said Ms Disney Aguila, board member of the Bahaghari Center for SOGIE Research, Education and Advocacy Inc. (Bahaghari Center), highlights how “numerous sectors continue to be ignored in HIV-related responses.”

Aguila, the concurrent head of the Pinoy Deaf Rainbow, the pioneering organization for Deaf LGBTQIA Filipinos, added that “it needs to be emphasized – particularly today as #WAD2019 – that HIV can only truly be dealt with if everyone is on board.”

WORSENING HIV SITUATION

As reported by the HIV/AIDS & ART Registry of the Philippines (HARP) of the Department of Health (DOH), the Philippines has 35 new HIV cases every day. The figure has been consistently growing – from only one case every day in 2008, seven cases per day in 2011, 16 cases per day in 2014, and 32 cases per day in 2018.

In July, when HARP released its (delayed) latest figures, there were 1,111 newly confirmed HIV-positive individuals; this was 29% higher compared with the diagnosed cases (859) in the same period last year.

Perhaps what is worth noting, said Aguila, is the “absence in current responses of minority sectors” – e.g. when even data does not segregate people from minority sectors, thus the forced invisibility that used to also affect transgender people who were once lumped under the MSM (men who have sex with men) umbrella term.

For Aguila, this is “detrimental to the overall response re HIV because specific needs are not answered.”

DEAF IN FOCUS

In 2012, Michael David C. Tan – publishing editor of Outrage Magazine, the only LGBTQIA publication in the Philippines, and head of Bahaghari Center – conducted “Talk to the Hand”, the first-of-its-kind study that looked at the knowledge, attitudes and related practices (KAP) of Deaf LGBT Filipinos on HIV and AIDS. The study had numerous disturbing findings.

To start, majority of the respondents (33 or 54.1%) were within the 19-24 age range at the time of the study, followed by those who are over 25 (21 or 34.3%). Most of them (53 of 61 Deaf respondents) had sex before they reached 18. Many (36.1%) of them also had numerous sexual partners, with some respondents having as many as 20 sex partners in a month.
Only 21 (34.4%) use condoms, and – worryingly – even among those who used condoms, 12 (19.7%) had condom breakage during sex because of improper use.

Perhaps the unsafe sexual practice should not be surprising, considering that not even half (29, 47.5%) of the respondents heard of HIV and AIDS, with even less that number (23, 37.7%) knowing someone who died of HIV or AIDS-related complications. And with not even half of the total respondents (29) familiar with HIV and AIDS, not surprisingly, only 19 (31.1%) considered HIV and AIDS as serious, with more of them considering HIV and AIDS as not serious (20, 32.8%) or maybe serious (22, 36.1%).

The study also noted that the level of general knowledge about HIV and AIDS is low, with 40 (65.6%) of them falling in this category. Only about 1/5 of them (12, 19.7%) had high level of knowledge about HIV and AIDS. Even fewer (9, 14.8%) may be classified as having moderate knowledge level.

For the Deaf community, at least, accessing testing and – if one tested HIV positive – the TCS is challenging because “we’d need Filipino Sign Language (FSL) interpreters who can help make sure we’re getting the right information/treatment/et cetera, Aguila said. And in the Philippines, the numbers of service providers who know FSL remain very limited.

Already there are Deaf Filipinos trained to conduct CBS particularly for other Deaf Filipinos – here in “Stop HIV Together“, a photo campaign stressing the need for inclusion.

INCLUDING OTHER MINORITIES

Aguila stressed that forced invisibility, obviously, does not only affect the minority Deaf community as far as HIV-related responses are concerned – e.g. “other persons with disability continue not to have HIV-related interventions,” she said.

For Aguila: “To truly stop HIV and AIDS, we need to be inclusive.”

Back in the city south of Metro Manila, Jay was forwarded to a counselor who knows FSL so that he can be supported in accessing TCS. Even that was “problematic,” said Jay, because “I was ‘forced’ to come out to someone I didn’t necessarily want to disclose my status only because I had no choice.”

For him, this highlights “how we just have to make do with what’s there; and there really isn’t much that’s there to begin with.”

He feels “lighter” now, however, having started his antiretroviral treatment (ART). But he knows he’s one of the “lucky people with contacts”; and that “not every one has access to the same support I had… and that’s something we need to deal with.”

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Outrage Mag EIC speaks at #AIDS2024 to highlight HIV challenges in PH, need to shift to DevCom

In responding to HIV, there is a need to consider how different the Philippine context is, according to Outrage Magazine editor in chief Michael David Tan as a panelist in a journalist-led session at the 25th International AIDS Conference, or #AIDS2024.

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MUNICH, GERMANY – In responding to HIV, there is a need to consider how different the Philippine context is, according to Outrage Magazine editor in chief Michael David Tan as a panelist in a journalist-led session at the 25th International AIDS Conference, or #AIDS2024. To-consider scenarios, for Tan, include: the “Westernization of HIV discourses”, absence of political will, and reliance on donor agencies that end up dictating the course of actions taken to deal with HIV in the Philippines.

“In the Philippines, we tend to almost always focus on Western sources when we discuss scientific findings. Locally, we refer to that as the ‘Westernization of HIV discourses’, basically. So you find local studies, local findings, and yet those are not seen as at par with Western sources,” Tan said.

However, Tan added, “even with the scientific findings from international sources, you also have to consider the second aspect, which is – when it comes to introducing HIV medicines, for instance, in the Philippines – almost always, it’s not because it’s dictated by science, or by good findings. Almost always it is because it is dictated by donor agencies.”

The lack of political will has implications to the HIV responses of the country, stressed Tan.

Tan was the first Filipino journalist to write in the Philippines about pre-exposure prophylaxis (PrEP) and U=U (undetectable=untransmittable) as early as 2016, and yet it took the government and HIV-centric non-government organizations (NGOs) over two years to include these in the country’s HIV responses. Again, these were introduced “not because science said (they are) working, but because door agencies started saying, ‘Oh, this is the direction you need to go into.’”

Facilitated by Peter-Philipp Schmitt, editor of Germany and The World at Frankfurter Allgemeine Zeitung, the panel also included: Apoorva Mandavilli, reporter at The New York Times; Ashleigh Furlong, health reporter at Bloomberg; Kat Lay, The Guardian‘s global health correspondent; Mia Malan, editor in chief at Bhekisisa from South Africa; and Armen Aghajanov, a manager at #HelpNowHUB in Ukraine.

In defining the media’s role in dealing with HIV, Tan advocated for a different approach – e.g. development communication. For him, it is no longer enough to just report on an issue, and then nothing gets done about what was reported on.

Outrage Magazine, as an example, has been reporting on the continuing exclusion of Deaf Filipinos in HIV responses, and yet “nothing was being done about them by the government and by HIV NGOs.” So the publication itself trained Deaf community leaders on community-based HIV screening to empower them to deal about HIV on their own, without the need to rely on Hearing people for testing and for treatment, care and support.

There are also changes in the media landscape that affect HIV-related reporting, in particular. AI, as an example, may produce new content, but could also sow misinformation.

For Tan, as far as technology use in media is concerned, it’s a “Pandora’s box; the box has already been opened” so “it’s not like we have a choice.” And so now, “it is more on ‘How do we use it?’. And a lot of the usage can actually already be seen now even in a lot of media bodies. Comment moderation, for instance, (can) make use of AI. If there’s one thing that makes AI worse, it’s the creation of more content. Everybody can just type something, and then it comes out as another thing. This adds another layer of work for journalists on fact-checking, on (cross-referencing) misinformation being put out there. The challenge now is how do we actually make use of AI to better the reporting, including of HIV-related reports.”

Tan similarly recommended caution in the current approaches including of HIV service providers. He cited as an example the use of “influencers” who are placed in positions of power slowly because of the number of their “followers” and not their actual expertise, and so doing more harm than good.

“In the #Philippines in particular, there’s now a reliance of service providers on influencers. This actually creates faux experts in the field, who are trying to discuss #HIV, #PrEP but don’t know what they’re talking about.”

Tan completed his BA Communication Studies from the University of Newcastle in Australia, and Master of Development Communication from the University of the Philippines-Open University in the Philippines.

Tan’s presence in the International AIDS Conference was supported by the Community Solutions Program’s (CSP) Alumni Speaker Fund.

“Putting people first: How to translate science and policy to the world” is available from the #AIDS2024 virtual portal.

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Bahaghari Center’s co-director highlights intersectional issues of PWD LGBTQIA workers, pushes for inclusion in workplace

While there are a handful of companies that try to be inclusive of persons with disability, including those who also belong to the LGBTQIA community, multiple challenges remain, stressed Mx Disney Aguila, co-executive director of Bahaghari Center.

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While there are a handful of companies that try to be inclusive of persons with disability, including those who also belong to the LGBTQIA community, multiple challenges remain, stressed Mx Disney Aguila, co-executive director of Bahaghari Center for SOGIE Research, Education and Advocacy, Inc. (Bahaghari Center), while speaking in a panel for Pride Summit 2024.

As part of the discussion on “Leveling the playing field: Disability inclusion in the workplace”, Aguila said that “many companies now (see) disability at work, and (provide) opportunity to PWDs.” And yet “even those with good intentions may not be fully sensitive to PWDs.”

A good example is the actual hiring of Deaf people, and yet “they do not provide Filipino Sign Language (FSL) interpreters at work, and so miscommunications are bound to happen”. And when such miscommunication do happen, it is the Deaf employee who gets sanctioned, thereby contradicting the “inclusive” messaging.

ALL PHOTOS COURTESY OF ODESSE OPLE ONGSING

But Aguila also noted that PWD is an umbrella term; as such, there are many conditions to be considered, each with various needs, requirements, et cetera. As an example, “many people think PWDs are only Hearing people, and so Deaf people are still left out when no FSL interpreters are provided (in the hiring process, as well as in workplaces where Deaf people work).”

In the end, Aguila stressed, “there is a need to focus on increasing awareness.” This is because for her, “advocacy starts with awareness”, and “we tackle this a step at a time… always.”

ALL PHOTOS COURTESY OF ODESSE OPLE ONGSING

Pride Summit 2024, themed Limitless: Inclusion beyond horizons, was organized by the Philippine Financial & Inter-industry Pride (PFIP), an organization representing representatives from LGBTQIA employee resource groups and human diversity teams of private firms in the Philippines.

With Aguila in the panel were Krissy Bisda, consultant on gender equality, disability and social inclusion at The Asia Foundation; and Carla Nobleza, Cynder management consultant. The panel was moderated by Leo del Castillo, leadership development manager at Foundever.

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Bahaghari Center head, Disney Aguila, trains HIV hub on Deaf issues, basic FSL

Mx Disney Aguila, co-executive director of Bahaghari Center for SOGIE Research, Education and Advocacy, Inc. (Bahaghari Center), helmed a training of Hearing people who work in HIV advocacy from My Hub Cares (MHC).

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With HIV service providers still predominantly coming from the Hearing community, it is “just right to make them more aware of the need to be sensitive to the issues of Deaf Filipinos”.

So said Mx Disney Aguila, co-executive director of Bahaghari Center for SOGIE Research, Education and Advocacy, Inc. (Bahaghari Center), as she helmed a training of Hearing people who work in HIV advocacy from My Hub Cares (MHC).

“Deaf people, including Deaf LGBTQIA people, are also at risk for HIV infection, and yet existing HIV efforts often exclude them,” said Aguila, who enumerated – among others – the lack of Filipino Sign Language (FSL) interpreters in HIV facilities, absence of FSL-sensitive IEC materials on HIV, et cetera.

Aside from basic FSL lessons, Mx Aguila also gave lectures on specific issues faced by the Deaf community when trying to access HIV testing, and – if one tested HIV positive – access treatment, care and support services.

For Ico Rodolfo Johnson, who helms MHC, it may be cliché, but “we need to make real the saying that no one should be left behind.” In HIV-related efforts, this includes “persons with disability, such as Deaf people, who need to be included in our efforts.”

In the end, said Mx Aguila, “we really need to do more to ensure we’re truly inclusive… and that’s exactly what we’re doing with these trainings.”

To invite Mx Disney Aguila for talks on Deaf LGBTQIA issues and on inclusive development, email info@bahagharicenter.org, or directly contact her via Facebook.

For more information on the inclusive HIV service delivery of My Hub Cares, head to Unit 607 Tycoon Center, Pearl Drive, Ortigas Center, Pasig City; call 0917 187 2273; or visit their Facebook page.

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