Page 5 - PC Fall 2023

presbyterian.ca
FALL 2023
HIV and Stigma
Connection
PRESBYTERIAN
5
By Callie Long, Communications Office
In 2022, the United Nations Joint Program on HIV/AIDS (UNAIDS) reported that “multiple and over- lapping crises have rocked the world [with] a devastating impact on people living with and affected by HIV, [knocking] back the global response to the AIDS pandemic.” Yet, even as the world grapples with different disasters, we must continue to talk about Human Im- munodeficiency Virus (HIV)—an ongoing crisis that is fast disap- pearing in the public rear-view mirror. And with “progress fal- tering, resources shrinking and inequalities widening,” what does this mean for the estimated 38.4 million people living with HIV globally?
While we live in a world where HIV is entirely treatable, prevent- able and non-transmissible, one of the most significant barriers for people who need treatment is the stigma associated with living with HIV. On April 19 this year, an online round table organized by the World Council of Churches (WCC) gathered a global cohort of faith leaders, HIV program practitioners and others working to eliminate the stigma and dis- crimination associated with HIV to discuss new ways to tackle the harmful and debilitating percep- tion that continues to cling to HIV.
Two panels participated in the online discussion: one focused on current research and work on HIV stigma, while the other pro- vided theological and faith-based reflections and perspectives. The panellists’ task was to revisit responses to HIV and consider why we cannot stop our negative responses now, despite the mas- sive biomedical gains made. Gra- cia Violeta Ross, program execu- tive for the WCC Ecumenical Aids Initiatives and Advocacy, pointed out in her welcome remarks that stigma causes terrible harm “to people who need access to pre- vention and treatment.” Adding to the urgency, Dr. Manoj Kurian,
WCC coordinator for the Ecu- menical Advocacy Alliance, noted in an opening prayer, “We are told to see the good in each other, but still, we stigmatize.” Asking for forgiveness, given how “we exclude” people, Kurian prayed: “Help us to design ways, with your wisdom, to overcome and eradicate stigma.”
Stigma is never just stigma and is always enmeshed in power re- lations, as Dr. Umunyana Rugege, from UNAIDS, who joined from Johannesburg in South Africa, pointed out. Historically, “people living with HIV [have] died without access to treatment, they [have] experienced violence and were ostracized because of their HIV status.” This was particularly true for South Africa because of AIDS denialism. Dr. Rugege reminded us that it was a faith leader— Archbishop Desmond Tutu— whose powerful voice joined with those of other AIDS activists to advocate for the human rights of people living with HIV. Yet, for decades, HIV has been overlayed with moralizing and stigmatizing judgements that continue to harm people living with the virus and all who love them.
Sharing lessons learned at a country level, Harry Prabawo, from the Global Partnership on Stigma and Discrimination’s Asia Pacific Network of People Living with HIV (APN+), spoke about the intersectionality of the disease and stigma and discrimination and how self-stigma can pro- foundly affect people, preventing them from not only accessing treatment but also living their lives fully, including living out their faith. Prabowa’s points were echoed by Nadine Ferris France, founder and CEO of Beyond Stigma. Working with young people living with HIV in Zimbabwe, Ferris France ex- plained that the ripple effects of internalizing stigma could have severe and debilitating long-term consequences, especially for young people born HIV positive.
Tackling HIV stigma and dis- crimination remains a “core area
of [...] intervention” of the WCC, explained the Rev. Dr. Kenneth Mtata, WCC program director for Public Witness and Diakonia, pointing out that people living with HIV stigma and discrimination be- come increasingly isolated. “We have heard many testimonies of people living with HIV who wit- nessed and succumbed to chal- lenges, some [dying] not because of HIV but because of the chronic depression from stigma and discrimination.” He highlighted the role of churches and their faith-based partners’ continued efforts to seek justice for vulner- able people, noting that “the faith sector, with the right information about HIV, can become a source of hope, reconciliation, and edu- cation.”
The Rev. Canon Gideon Byamu- gisha—co-founder of the African Network of Religious Leaders Liv- ing with and Personally Affected by HIV and AIDS (ANERELA+), and the first religious leader in Af- rica to make it publicly known in the 1990s that he was HIV posi- tive—shared how his own experi- ence with HIV changed because his church leadership decided to extend their compassion and love to him. Theirs was a love ground- ed in a faith that included him.
This is what we can think of as “statistically significant love,” said Dr. David Barstow, a con- sultant with the WCC studying churches’ responses to HIV stig- ma, who shared the main findings
of the study—all of which can be replicated within a faith-based context. One of the 15 recom- mended practices Barstow high- lighted was that, as faith commu- nities, we should “openly discuss HIV stigma and how religion can both help and hurt.”
Stigma, constantly in flux and never a single event, is relational and always functions in what we can think of as an ecosystem of history and ideology. Yet cultur- ally, we live in a binary and du- alistic context that increasingly feels absolutist—a way of think- ing that traps us in a world of us and them, good and bad, love and hate, with little space for nuance.
“Yet here we are, in 2023, still talking about HIV and its stigma,” noted the Rev. Jape Mokgethi- Heath of the Chaplaincy of Mal- mo, Sweden, because “we have struggled to unlock the roots of stigma.” Instead, with the advent of antiretroviral treatment, “we have seen HIV [to some extent] go underground and become hid- den [but we have yet to answer] how we could have allowed stig- ma to exist in the first place.”
I was asked to participate in the discussion, as my doctoral research focused on working to- ward a theory of HIV stigma re- duction by looking to unlock the roots of stigma and adopting a reparative, trauma-informed and decolonial approach. In brief, I argued that we need to revisit the systemic structural conditions
that have resulted in the disease being so polarizing. We need to consider stigma not simply as a particular kind of (abhorrent) behaviour but as a manifestation of power that comes with incre- mental forms of violence—at times spectacular, but also, often, insidiously. By adopting a repara- tive approach when focused on the structural elements of HIV-re- lated stigma, by intentionally fore- grounding Indigenous knowledge, countering epistemic injustice, and thinking in terms of the long duration of stigma as a traumatic encounter, we can recognize stig- ma not only as behaviour enacted by individuals but as a practice embedded in complex social dy- namics that are always linked to and shaped by history.
Even as the world, to some extent, remains focused on its re- sponses to COVID-19 and is now dealing with a slew of coronavi- rus disease-related stigmatizing behaviours, it does not mean that we can dismiss HIV within the context of the latest pandemic. Despite some four decades of research, HIV remains a histori- cal, political, social and cultural crisis that maintains a Velcro-like capacity to stigmatize and dehu- manize people who live with or are affected by HIV. Let us work to engage faithfully in a radical form of political practice that speaks to our ethical obligations in respond- ing compassionately to each oth- er across our differences.
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