PIA KEELEY-JOHNSON
Dear Gavin Williamson,
I am a queer woman living in London who, like more than 18.9 million people1 who sat down to watch Russell Davies’ hit show It’s A Sin over the last two months, just received the best HIV/AIDS education of my 23 years of life from a TV drama. I was not totally ignorant to the impacts of HIV/AIDS before this point. I am an anthropology graduate, and I am invested in LGBT history and experience. It’s A Sin truly managed to throw the joys, heartaches, liberties and dangers of being an LGBT+ person in the UK into definition, and in doing so set a stage for ongoing narratives of homophobia that affect the health of our community today. Both its content and its immediate reception have illuminated areas of weakness within UK RSE and Health Education. This letter aims to contextualise, outline and advocate against these inadequacies.
I was not the only one for whom the show highlighted the reality of the AIDS crisis. Reports suggest that Google searches for HIV/AIDS related content by Feb 2021 had increased by 233% since before the show’s release on January 22nd2, while HIV Testing Week 2021 (which conveniently fell only days after the release) reportedly saw more tests administered in one single day than the entire of HIV Testing Week in 20193. Whilst the impact of the show on HIV/AIDS awareness is something to be celebrated, it exposes a blatant lack of prior education around the disease.
As of 2019, there were 101,600 people diagnosed with HIV living in the UK4. Medical technologies have ensured that most people diagnosed with HIV/AIDS today live long and fulfilling lives. There remain, however, two major issues with the state of HIV/AIDS awareness in the UK. One: we have developed a complacency, to echo Norman Fowler’s words5, towards educating about HIV/AIDS. A concerning number of people report having little understanding of how the disease is contracted, spread and treated: only 65% of the population, for instance, are able to identify all three methods of HIV/AIDS transmission6. Despite the UK hitting its UNAID 90-90-90 targets, Public Health England estimated in 2020 that around 6600 people remain untested, infectious and oblivious to the fact they contracted the disease, with up to 45% of people experiencing late diagnosis as a result7 . With PrEP treatments now freely available to anyone at risk, new cases will impact on NHS costs, increasing pressure on health services8.
It also goes without saying that HIV/AIDS can have drastic impacts on the medical and social lives of those infected. These emotional narratives are something that It’s A Sin portrayed rather explicitly so as to effectively incite sexual health awareness and concern. Albeit living with HIV/AIDS today looks very different, such provocative stories are as integral as the science of disease transmission for a comprehensive education of HIV/AIDS and its political history. According to educational philosopher Shaun Gallagher, narratives in education “offer critical possibilities… map out the immediate and deeper contexts of action and understanding, provide detailed descriptions of events, objects and persons… define the identities and roles of individuals and groups, and express agreement among individuals”; “they can be the keepers of memory, but also represent the blueprints of change”, pushing us beyond narrow perspectives. 9
However, modern narratives, particularly those of HIV positive black African men and women in the UK – a group which constitutes 38% of all heterosexual HIV cases – are almost non-existent10. Narrow perspectives about HIV/AIDS do not only harm LGBT communities. The issue is far broader and more anthropological. Sociologist and HIV/AIDS activist Drew Dalton points out that as experiential public awareness diminishes, cultural narratives and memories of HIV become static, retaining the stigma of the 80s despite the fact that we now have access to the medical technologies of the 2020s11. And as technologies evolve, so should narratives of what it means to contract and live with HIV/AIDS. We need not just testing, but truths – truths that will show the realities of the disease both then and now.
Two: static narratives cost lives. There is no excuse for a delay in eliminating new transmissions of HIV; testing has advanced since the 80s, with home test availability and near-instant results12. Treatment is over 90% effective, making most HIV/AIDS cases undetectable13. Today, it is miseducation and homophobia that kills. The persistent labelling of HIV/AIDS as a ‘gay disease’ since its first diagnosis in 1983 is both reductive and scientifically incorrect14. Corrective narratives are paramount in HIV/AIDS prevention because prejudiced discourse is dissuasive of HIV/AIDS testing and education for the wider population15. Statistics are telling not only about rates of transmission, but about demographic tendencies towards the stigmatisation of sexual health and LGBT+ education. Most disproportionately affected by HIV in the UK are Black African people, comprising 34% of all those diagnosed with HIV in the UK in 201216. Despite these statistics, the HIV-needs of these communities are neglected by policy-makers and funders (NAT) 17. Furthermore, research proposes that black and minority ethnic groups are more likely to adopt homophobic attitudes, reportedly because of the effects of immigration, socialisation into fundamentalist Christian belief systems and a cultural rejection of advancing UK same-sex rights18. Homophobic prejudices are therefore related not only to financial pressure on health services, but to the reiteration of cultural narratives across the UK. With our nation making promising progress on its HIV/AIDS 2030 target rates, the homophobia that lurks silently behind the statistics is overlooked. To educate the nation about the truths of HIV/AIDS is essential to establish solidarity and acceptance for all those suffering from the ongoing historic impacts of its debilitating social reception.
From centuries-long practices of LGBT discrimination and criminalisation to the political and personal trauma of the AIDS pandemic to the government’s 1988 establishment of Section 28 – only repealed in 2003 – LGBT people in the UK have taken hit after hit19. We cannot let this apathy towards tackling homophobic AIDS-based discrimination be another blow for our LGBT citizens. So why has it been allowed to persist?
More practically, how do we tackle this problem? To change the narrative I suggest we start by reworking the most centralised and accessible form of education: the school system.
Current standardised requirements for HIV/AIDS secondary education in UK schools, are as follows:
“Pupils are expected to know… how the different sexually transmitted infections (STIs), including HIV/AIDs, are transmitted, how risk can be reduced through safer sex (including through condom use) and the importance of and facts about testing.” 20
This is the one and only reference to HIV/AIDS in the 50-page RSE statuatory guidelines document: a singular mention of an pandemic disease which has killed 32 million since its discovery in the early 80s21. This brief mention is not enough to educate new generations about the prejudice directed towards those living with HIV/AIDS. Nor is it enough to promote sexual wellbeing and encourage testing amongst other at-risk communities. Considering that changes to governmental RSE guidelines in 2019 purportedly made LGBT sex education mandatory in all secondary schools as of 2020, this is incomprehensible22. The neglect of one of the most significant events in recent LGBT and global infectious disease history does not constitute adequate LGBT education. As Drew Dalton would argue, it treats HIV/AIDS as nothing but a medical problem, outlining its mechanisms of transmission rather than understanding its engagements with society23. This treatment constitutes something that anthropologist Liz Walker thematises as ‘post-AIDS’ discourse: biomedical and biopolitical notions of the disease that perceive it as a simple issue of medical eradication24. In reality, she argues, this over-simplifies the “ongoing complexity, stigma and chronicity” of HIV/AIDS in both the Global North and Global South25.
Even more unforgivably, it fails to account for the fact that HIV/AIDS is not a gay disease, as evidenced by its prevalence amongst black heterosexual African men and women. Rather, HIV/AIDS is a sexually-transmitted but socially lived disease that has been used to decimate gay partnerships and the LGBT community. Today, this tactical miseducation and stigmatisation is hurting other UK communities, too.
As it stands, a standardised national RSE curriculum doesn’t cut it. According to the Sex Education Forum, over a third of young people surveyed in 2018 had learnt nothing about HIV in school, or not educated according to guidelines26. While the new RSE initiatives aim to tackle this, I see two problems with a standardised curriculum. Firstly, it fails to account for cultural and religious nuances that influence curriculum delivery. HIV/AIDS and LGBT content must be delivered sensitively and with regard for local belief systems. This brings me to my second point: a standardised but flexible curriculum places pressure on teachers to tailor lessons plans that not only account for national guidelines, but that sensitively tackle topics that are stigmatised by local communities. This is time consuming and emotionally straining for teachers, who take a personal hit for their pedagogical decisions. You may remember that in Birmingham in 2019, staff at Anderton Park School were put under fire for including LGBT+ children’s books in the PSHE curriculum27. Is it fair to place teachers at the centre of the battle of stigma vs sexual health awareness?
What the battle for HIV/AIDS education requires is an urgent commitment to tackling these deficiencies. This commitment necessitates three things. First, a push for attention towards the deficiencies of the existing system. Fact-finding initiatives would do valuable work to reassess the state of HIV/AIDS awareness in the UK, particularly amongst at-risk communities.
Second, it requires better partnerships with educational boards on a local level, both financially and epistemologically. The HIV Commission 2020 set an action for the Department of Health and Social Care to develop a return on investment tool for HIV prevention interventions28. We must invest in narratives that show the affective histories behind HIV/AIDS, and moreover how local misconceptions about the disease stem from homophobia. We need to engage with local communities, particularly those with high numbers of at-risk groups, to identify the stigmas that are preventing education, testing and treatment. We must better situate national curricula within local context.
Finally, we must commit to a spiritual renewal. We are disappointingly distanced from Susan Sontag’s hope that AIDS would one day become an ‘ordinary illness’, removed from its dehumanising social significations29. Intolerance cannot continue to cast a dark shadow behind health and social practices in the UK. I hope that you will support the strength of former Labour cabinet minister Lord Chris Smith, MP Lloyd Russell-Moyle and Oval ward Cllr Philip Normal, all UK-based political figures who have each disclosed their HIV positive statuses in defiance of the shame bestowed upon those with the disease30 31 32.
When it comes to HIV/AIDS, one death is too many. Testing is accurate, and treatments are effective. Today, the killers are amongst us: those who are apathetic, prejudiced, discriminatory and homophobic. That is the sin.