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HIV status: Plagued by prejudice and stigma

by
26 November 2021

As World AIDS Day approaches, Abigail Frymann Rouch reports on how churches are responding to HIV

Terrence Higgins Trust

The Revd Jide Macaulay

The Revd Jide Macaulay

A SUITED young man is talking to camera. “After I was diagnosed with HIV, my life really changed.

“I realised my dream to become an airline pilot.”

A few frames later, a man in a clerical collar appears: “I became an Anglican priest in the Church of England.” The message of the video, part of a new campaign by the Terrence Higgins Trust, is that HIV has changed.

No longer does a diagnosis mean a short, terrifying slide towards AIDS and death; no longer a daunting 40 to 50 pills a day. Thanks to incredible medical breakthroughs, if HIV is caught early, life expectancy at diagnosis can be pretty much unaffected by the condition.

Yet what hasn’t changed, at least in some circles, is the stigma of a condition originally dubbed “the gay plague”. It still invites wild speculation and judgement about the person diagnosed with it. While the medical aspects of HIV have been addressed with phenomenal success, the socio-cultural associations continue to produce fear and stigma. Christians with HIV say that churches are a minefield of unpredictable attitudes. Christian HIV charities can be hard to find.

The priest in the video, the Revd Jide Macaulay, says that he knows more than a dozen other clergy with HIV. He has chosen to be public about his status, even though it has not been easy for others to accept. The congregation where he is a self-supporting curate learned of it through a Terrence Higgins campaign in 2019.

“It became a conversation — of course, behind my back — about ‘Oh, he’s HIV-positive; I’m not sure we can accept the chalice from this person,’ and things like that, and that hurts. And this particular incident was not addressed by the priest.”

His incumbent, Canon Neil-Allan Walsh, says that he and the congregation learnt of Fr Macaulay’s HIV status on social media: “It would have been easier to have been pre-warned.” But Canon Walsh maintains that Fr Macaulay’s status was “never an issue”, and, “once he was priested and celebrated mass, people received. . . I suspect there was gossip,” he admits, but in parish ministry there were “always mutterings”.

How to create an environment where “mutterings” are unlikely to occur in the event of a disclosure is an important consideration. According to the Terrence Higgins Trust, about 105,000 people in the UK live with HIV. There are about 6000 diagnoses a year. In addition, an estimated 6600 people living with HIV are unaware that they have it. Of those receiving treatment, gay and bisexual men, and Black African men and women, are disproportionately represented.

And so are Christians. According to state-funded research from the group Changing Perceptions in 2018, 52 per cent of people with HIV in England and Wales identify as Christians, compared with 38 per cent of the general population. A study of Black Africans receiving treatment for HIV in London, published in the journal HIV Medicine in 2012, found that 91 per cent identified as Christian.

Yet you might not realise. “Rates of non-disclosure are higher among people who attend church,” says Dr Vincent Manning, the director of Catholics for AIDS Prevention and Support (CAPS), an ecumenical peer-support HIV ministry part-funded by the Catholic Bishops’ Conference. Its patrons include the Anglican Bishop of Southwark, the Rt Revd Christopher Chessun, and the RC Archbishop of Southwark, the Most Revd Peter Smith. “The Church hasn’t responded to the pastoral and spiritual needs of people living with HIV in this country in our midst,” Dr Manning adds.

And yet several interviewees said that, without clear encouragement, a person with HIV will infer from a church’s silence indifference or hostility. After all, disclosing their status to friends or family may have already resulted in rejection.

 

THE Church’s record is far from perfect: several of those interviewed mentioned with horror the case of Fr Alan Griffin, the Ordinariate priest who took his life in November 2020 after false sexual-abuse allegations were made against him (News, 19 July). The coroner noted that one of the incorrect allegations made about Fr Griffin was that he had knowingly slept with people while he was an HIV-infection risk.

She noted that his HIV status had been revealed to the RC diocese of Westminster’s safeguarding officer by their diocese of London counterpart. (No one is obliged to tell their employer of their HIV status.) And she noted that the diocese of London had neglected to say that Fr Griffin had attempted suicide when diagnosed, about nine years earlier.

James ParsonsJames McAbraham with Canon Marion Chatterley

The diocese of London and Lambeth Palace expressed in a submission to the coroner “their deep regret and sorrow at the death of Fr Alan Griffin”. Westminster diocese expressed its “sorrow and dismay”.

Fr Macaulay believes that church should be the safest place to disclose one’s status. “If you cannot share your diagnosis with your church, who can you trust?” he asks. The key, he says, is to focus on the person’s needs rather than how they became infected. The Church needs to “get its head out of the sand, and address HIV stigmatisation in the Church and the ignorance . . . shame and denial . . . so people with HIV can live their best life within the church community.” He suggests that churches could host monthly testing events.

 

MEDICAL advances have already improved the life-chances of people with HIV immeasurably. Some 25 years after their introduction, antiretrovirals (ARVs) can be so effective as to make the virus undetectable, and therefore untransmissible, which is summed up by the public-health slogan “Undetectable=Untransmittable” or “U=U”.

If someone’s HIV is diagnosed early, and they faithfully take their medication — which could be just one pill a day — they may live as long as if they had not contracted the virus. Thanks to global players such as UNAIDS and PEPFAR, ARVs have been made free to people with HIV in developing nations.

HIV work by Christian Aid has shifted away from helping families decimated by AIDS to focus on reducing stigma, campaigning for universal access to ARVs, and discouraging practices that increase women’s vulnerability, such as early marriage, “wife inheritance”, and favouring boys when it comes to education and prospects.

The availability of ARVs also means that far fewer HIV-positive mothers pass on the virus to their child during birth. And, more recently, PrEP and PEP, drugs that offer temporary protection just before and just after exposure to HIV, appear to have further decreased transmission rates.

Surely, then, the crisis has gone away?

“That’s a very medical viewpoint,” Dr Manning says. In the UK, he says, the Churches “delegated responsibility for HIV/AIDS to the medical Establishment”. But some secular agencies have tried to reduce HIV stigma by likening the virus to conditions such as diabetes. To do that, he argues, “is to deny the reality of HIV as a lived experience, and diagnosis as a shocking and deeply disturbing life event”.

Stigma persists where an HIV diagnosis is assumed to spotlight a moral failing. Yet some people become infected through a partner who is unaware that they are positive; others through a partner over whose behaviour they have no control. Children born before the dissemination of ARVs have grown up not knowing they were infected at birth. Some people do not know how they were infected. One person interviewed asked: “What difference does it make?”

 

SOME churches that offer support to people with HIV do so within their outreach to LGBT people, which suggests that, for other churches, fear of endorsing a particular lifestyle or behaviour may remain a barrier to engagement. Other organisations “accompany” people on their HIV journey without focusing on sexuality.

The dedicated chapel in Southwark Cathedral

One of these is Alongside You, which supports families affected by HIV in east London, and encourages churches there to supply volunteers who can visit families regularly. The charity receives referrals from social services and hospitals. The remit of CAPS is to offer pastoral and spiritual support to people with HIV, lay or ordained, and campaign for better care from the rest of the Church.

In Newcastle, the Blue Sky Trust offers one-to-one support, peer mentoring, workshops, and retreats for people with HIV, and receives referrals from clinics, psychologists, and social services. They say that their Christian ethos lies in recognising “the unique value of every individual”. Blue Sky was founded by another Christian charity, ACET-UK, which has shifted from offering palliative care to AIDS patients in the 1980s to today offering sex and relationships education, including HIV.

And what about religious organisations focused on people who are LGBT? Fr Macaulay founded the House of Rainbow in 2006 while living in Nigeria, to be what he has not found in the Church: “a safe space for the spiritual growth and inclusion for black LGBTQ+ people”. Now based in London, it provides one-to-one support, group meetings, and workshops for Black LGBTQ+ people and their families, and helps about 400 people around the world.

Among churches with visible LGBT outreach, HIV is sometimes encompassed in their welcome of LGBT members. The Metropolitan Community Church of North London marks World AIDS Day, and periodically runs an HIV support group. When one senior member — an ex-Baptist — disclosed his HIV-positive status while preaching, the congregation rose to their feet and applauded his openness.

Oasis Church, Waterloo, has marked World AIDS Day, and, with the Terrence Higgins Trust, hosted a pop-up testing facility. In the Church of England, St Bride’s, in Liverpool, has hosted a testing event for an HIV centre near by, and a play by the local sexual-health clinic.

The Bishop of Liverpool, the Rt Revd Paul Bayes, and the Archdeacon, the Ven. Mike McGurk, both got tested. Bishop Bayes said: “I was advised by my colleagues in the LGBTI+ community in this region that HIV testing is still marked by stigma and reluctance, and that it would be helpful if I stepped up and took a public test. . . It was a pleasure and a privilege to be publicly tested. . . I’m sure that other bishops and church leaders would be happy to be tested.”

 

IN SCOTLAND, the Revd Dr Marion Chatterley has been the Scottish Episcopal Church’s HIV chaplain since 2000. Now, as Vice-Provost of St Mary’s Cathedral, Edinburgh, she continues to offer one-to-one support to people with HIV — often people who are LGBT — and to host an annual World AIDS Day service.

The Church’s traditional teaching that sex is for married heterosexual couples does “absolutely not” have a place in her work on HIV prevention, she says, but she continues: “There’s a bigger picture that’s around: how do we help people into relationships that are meaningful, as opposed to encounters?” She says that her work is made easier by the decision by her Church to allow same-sex marriages.

Perhaps the most visible response to HIV by a Church, however, comes from the Church of Scotland, which, since 2002, has had a programme of mostly international HIV projects, and an annual fund-raising parish lunch. The Kirk has also published online resources to help churches to combat HIV stigma: prayers, a bespoke HIV ribbon, and practical guidance. The staff member of the Kirk’s Faith Impact Forum, Carol Finlay, says that this includes “how to listen to people — if someone is disclosing, not to stigmatise them”.

Resources for HIV and faith exist for Christians in England and Wales, but are less easily found. In 2017, CAPS launched a series of videos, Positive Faith. In them, CAPS members, clergy, and theologians discuss how HIV interacts with faith, together with issues of guilt and shame, and how churches can show acceptance and welcome. The videos appear on a bespoke website, positivefaith.net, but are not linked to the websites of the Church of England or the Catholic Bishops’ Conference.

The Church of England has taken a more hands-off approach than the Scottish Churches, with occasional statements and General Synod debates. A debate from 2004 recognised the HIV/AIDS work being done in the Anglican Communion, especially in Southern Africa, and included an exhortation to hold World AIDS Day services. A 2011 oral submission to the House of Lords Select Committee on HIV and AIDS in the UK stated that “there should be no room for discrimination or censure within or by the Church or wider society.”

A spokesperson said: “We recognise that the goal of eradicating all forms of [HIV/AIDS] stigmatisation has not yet been reached, but it is one that we must attain.” Other interventions have been localised, such as the lighting up of St Paul’s Cathedral in red for World AIDS Day in 2016.

By far the most sustained response has come from Southwark Cathedral, where a service for those living with HIV and AIDS takes place weekly in its dedicated AIDS chapel. Other initiatives have been scaled back as fatalities have decreased, such as interfaith World AIDS Day services. Now, however, the cathedral is planning to restart its HIV work. The Dean, the Very Revd Andrew Nunn, says that attitudes among younger gay men have “changed completely”.

With the availability of PrEP and PEP, “people feel, ‘Well you know, it’s not going to hit me,’ or ‘I can live with the consequences, just like being diabetic,’” Dean Nunn says. “We want to speak into that, because we think there’s something important to say about how we look after ourselves . . . whatever community we’re part of.”

The other sector of the UK population where HIV rates remain high is among Black Africans, and, according to the Terrence Higgins Trust, “they have among the highest rates of late diagnoses compared to other groups,” meaning that the virus has had longer to cause damage.

The response of Black-majority churches has been mixed. The pastoral support worker for CAPS, Zimbabwean-born Abigail, helps people come to terms with their diagnoses. She says that some pastors mention HIV as part of teaching about marriage, or issues such as breast cancer or prostate cancer. But, she says, “I have gone to help people who have come off medication because the pastor has said, ‘You are healed,’ to educate them about HIV — that, once you have it, you have it. And if you don’t take your medication, you will relapse.”

What messages have Christians with HIV been given from churches, and which were helpful? In Scotland, James McAbraham says that he has had positive experiences of disclosing his status to carefully selected clergy: Canon Chatterley and her predecessor, Canon Jane Millard, and the activist Roman Catholic priest and psychotherapist Fr Bernard Lynch.

Mr McAbraham met Canon Chatterley in 2007, when he was not responding to his medication. “Being able to talk with her about my HIV reality, my border-crossing [conversion from Anglo-Catholicism to Liberal Judaism], my fears, and rejection by a section of my family” was “a huge weight off my shoulders”, he says; and she has given him practical support as well. He has had friends with HIV and AIDS, heterosexual, gay or lesbian, however, who have been “left alienated by pretty much every denomination and faith going”.

Meanwhile, Abigail opted to tell no one at her church about her status. “When I got my diagnosis . . . I had a place to go and worship with others, without talking about HIV, without anything, just being in church, reading the Bible, and receiving bread and the blood of Jesus.”

 

SIMILARLY, a professional dancer, Joshua Royal, has not told people at the Baptist church of his childhood. He grew up attending Soul Survivor and other Christian camps, but felt unable to ask about being gay. While a student at the Royal Ballet School, he says he was told by an Anglican church that he could not be confirmed because he was actively gay.

Joshua Royal

“I rebelled; I felt like an outcast,” he recalls, and was diagnosed with HIV in his mid-twenties in 2015. His mother told him about Oasis Waterloo, and the Soho Gathering that Bloomsbury Baptist Church runs for LGBT people. When he disclosed his status, both churches were “supportive, understanding, welcoming”. After a break from dancing, “they’ve encouraged me to follow my dreams again.” He now teaches dance, and puts on arts events to tackle HIV stigma.

Meanwhile, the reaction that Fr Macaulay described, of people feeling wary of accepting the chalice from him, is not uncommon. Research from 30 east London churches carried out by Alongside You and the NGO Tearfund in 2013 found a disconnect “between people’s rational and emotional responses”.

Although just three per cent of participants believed that HIV could be spread by sharing food and plates, only 47 per cent said that they would be comfortable eating food prepared by someone with HIV. (HIV is not caught through saliva; so sharing cups is considered risk-free.)

 

SO, WHY the fuss for a condition that affects a fraction of the millions in the UK living with diabetes or cancer? Because some people argue that HIV’s socio-cultural dimension, and the part that the Church may play in maintaining that, even if unwittingly, make it exceptional.

Dr Manning wants to help the Church to understand HIV diagnosis in Christian terms. He has written of “an experience of affliction, the affliction that Jesus suffered at Gethsemane, wherein one feels totally bereft, hopeless; shock attends it . . . disorientation, and the fear of being abandoned by one’s friends and one’s community . . . and the experience that Jesus had on the cross that even God has abandoned us.”

Resurrection, he reflects, includes self-acceptance, healing within community, and service, and people with HIV should be listened to by the Church.

In one of the Positive Faith videos, Cate Jacobs, a poet now training for ordination, says that being asked to administer the chalice at holy communion was an experience of healing and reconciliation. She recites her poem “Kyrie Eleison”:
 

Holding a silver chalice of wine
I, with the blood of the untouchable,
the leper, the unclean, HIV positive,
offer you the blood of Christ.
Lord, I am not worthy, but only say
the word and I shall be healed.
 

Meanwhile, Fr Macaulay works with patients with advanced HIV-related conditions at the Christian-run Mildmay Mission Hospital, in east London, where he is a volunteer chaplain. The hospital chief executive, Geoff Coleman, reports: “He’s got this infectious smile.” When he talks to patients, some “start off scowling; but they can’t help but be smiling by the end of the conversation”.

HIV has changed. As a medical issue, it requires management. As a pastoral issue, its physical, emotional, spiritual, and social toll still presents unique challenges. For some people, some churchgoers, diagnosis is kept buried by fear of, or experience of, rejection, unless they find their way to specialist Christian pastoral support.

While some initiatives here come from churches focused on LGBT people, that sort of support does not involve buying into any particular sexual ethic. Holding a World AIDS Day service, inviting someone with HIV to preach, hosting a testing session, displaying literature or AIDS ribbons, offering friendship and practical help — all these actions speak louder than people without HIV can comprehend.

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