Content warning: This article discusses mature content, reader discretion is advised.
In November 1990, LIFE magazine published the last image of the HIV/AIDS activist, David Kirby. In the photo, surrounded by grief-stricken loved ones, his body emaciated by AIDS, David stares off into the unknown. At the time of publication, that evocative image, taken by journalism student Therese Frare, was revolutionary, perversely due to its touching compassion.
Previously, HIV/AIDS lacked a human face. Though the epidemic was visible, in ominous public health campaigns, such as in the famous ‘tombstone’ and ‘grim reaper’ ads, and in the pages of the dailies, figuring as a pervading threat; although a distant one, if safely confined behind a cordon sanitaire to those considered to be sexual or otherwise deviant, only to occasionally and tragically transfuse by mishap to the mainstream innocent.
Current public attitudes to HIV mirror the feelings of empathy found in the photo of David Kirby and in Princess Diana’s hospital ward hug. But there also is a lingering feeling of fear, propelled by misconceptions and stigmatisation – the baggage from the 80s and 90s.
In July of this year, the National AIDS Trust released the findings of a poll, which found that although attitudes have progressed considerably over the last 40 years, the stigma attached to the condition, while diluted, still persists.
Of those surveyed, 85% thought that people with HIV deserve the same level of respect as any other person with a health condition, and a majority believed that society is generally more positive towards those living with the virus. However, in focus groups, a significant number of participants expressed subjective comments and myths around HIV, such as that people with HIV were prone to promiscuous unprotected sex, that people in the past used HIV as a weapon to infect others, and that HIV could be potentially transmitted by kissing, shaking hands, and even standing next to someone.
These enduring misconceptions profoundly affect those living with the health condition, not only in terms of romantic relationships but also in terms of quality of life, mental health, and how they are perceived by society. Although, why have these misconceptions persisted? Especially in light of the vast progression made in antiretroviral and preventative medicines, notably PrEP. Additionally, what effect do these misconceptions have on the mental health of those living with HIV?
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Blame and self-stigmatisation
In an interview with Mental Health Today, Jim Fielder, head of living well at the HIV charity Terrence Higgins Trust, stressed the point “undetectable equals untransmittable” he continued:
“There are still high levels of misconception and ignorance around realities of living with HIV today many people still believe that you can catch HIV from kissing, by sharing cutlery or crockery, or from a toilet seat… The reality is that if you're on treatment and you have an undetectable viral load – you can't pass the virus on.”
In the UK, around 105,200 people are living with HIV, the virus that, if left untreated, can develop into acquired immunodeficiency syndrome (AIDS). Over 90% of those living with HIV in the UK are on effective treatment meaning that if the virus is imperceptible in their system and is, therefore, not infectious. But despite this 21st-century reality of living with HIV, misconceptions are still rife, and these misconceptions can often develop into stigmatising opinions and actions.
Mr Fielder added: “HIV is still a stigmatised condition, both in terms of people's self-stigma or the internalised stigma around it and in the actual experience of stigma or discrimination. There is blame wrapped up around in stigma, and some people might think of a diagnosis in terms of ‘good HIV’ and ‘bad HIV’. Suppose you've got it through sex, particularly something like gay sex, which may still also be stigmatised. In that case, that might be categorised in the ‘bad HIV’ camp for some people, whereas if you've got it through, say, a contaminated blood product that might be seen differently.”
This distinction between ‘good HIV’ and ‘bad HIV’ is a relic of the 1980s, originating in stories like that of Ryan White, an American child with haemophilia who became infected in 1984 with HIV from a contaminated blood treatment. He was seen by many as an 'innocent victim' of the AIDS epidemic. However, Ryan and his family rejected the term as it implied that specifically the gay community, drug users, and many affected Black communities were the ‘guilty’.
Presently in research examining public attitudes of HIV, it is clear that many still think of the condition in the old contrast between the ‘good, passive, and innocent’ and the ‘bad, active, and responsible’. This is shown in the National AIDS Trust poll, which found that only one-third of the public have complete 'sympathy for all people living with HIV regardless of how they got it', with the majority of those surveyed signalling that they believed that there are varying levels of personal responsibility or culpability for a diagnosis. Although that figure is starkly an improvement, another study conducted by the National Aids Trust in 2014 found in binary terms that 49% of British adults did not have sympathy for people with HIV if they were infected through unprotected sex, down from 66% in 2010.
The philosopher Susan Sontag wrote in her book ‘AIDS and its metaphors’ that one of the reasons behind why discussions on HIV/AIDS distinguish between the guilty and the innocent is because HIV is talked through the metaphors of the plague, generating a 'tainted community that illness has judged'. Sontag adds that this moral judgment is reflected throughout history, especially in the discussion of venereal epidemics, such as in one of the earliest – the centuries-old syphilis. She wrote that getting an illness mostly transmissible through sex highlights for wider society the unnaturalness and wilful immorality of those persons engaging in that ‘dangerous’ practice.
The fear of personal contamination and judgement, Sontag continued, finds further representation in the bizarre fantasies attached to transmission; for example, to avoid catching syphilis, it became the norm to cover a public toilet seat in paper. The myths around transmission now focused on HIV, some of which are mentioned above, are consequentially characteristic of deep-seated phobias and fears of contamination from the others regarded as socially judged and tainted.
Evidently, the sexualised blame and misinformation surrounding HIV are not consigned to history as it was recently controversially vocalised by the rapper DaBaby. During a performance, the rapper said, "if you didn’t show up today with HIV, AIDS, or any of them deadly sexually transmitted diseases that’ll make you die in two to three weeks, then put your cellphone lighter up”, and then adding, “fellas, if you ain’t sucking dick in the parking lot, put your cellphone lighter up.”
In response to the widespread media backlash against his ignorant and insensitive comments, DaBaby explained on Instagram Live that he is, of course, not homophobic but, “my gay fans don’t got [sic] fucking AIDS. My gay fans, they take care of theyself, they ain’t going for that. They ain’t no junkies. I said, if you ain't sucking dick in the parking lot, put your cellphone light up. You know what my gay fans did? Put that motherfucking light up… My gay fans ain't going for that. They got class."
Although while DaBaby later retracted both those statements, his out of touch comments reflect both a broader cultural prevailing fear of HIV and a continuing moralised blame attached to those with the condition – as the phrase goes, ‘no man is an island’. This legacy of the enduring blame and stigma has had profoundly affected the mental health and wellbeing of those affected by the condition. Many have internalised the stigma that they have experienced and have taken on the negative self-image that the broader culture views them through.
Internalised stigma or self-stigma has led to feelings of shame, fear of disclosure, isolation, and depression (of which one in three people living with HIV experience). Addressing these feelings, Mr Fielder commented, is essential as these internalised stigmas are highly counterproductive to controlling transmission because they have led to people avoiding getting tested and also in receiving effective treatment.
He said: “People don't go and get tested because they don't want to know – they're worried. But of course, if they're living with HIV and are not tested, and they're infectious, then that's just going to lead to further transmission.”
“Firstly, it's really important to get everyone living with HIV on treatment, which means increasing testing and tackling stigma. The second thing is making PrEP (a highly effective preventative daily pill) available to people who need it and are at risk. And then the third issue is about keeping people on treatment, and that's about focusing on the wellbeing of people living with HIV.”
How can we address stigmatisation?
While there has been considerable evolution in how the public perceives HIV in the last forty years, the cultural trauma of the initial HIV/AIDS epidemic carries on in the legacy of blame and irrational fears of contamination, despite the progressions made in available treatments and preventative medicine. Therefore, the remedy for the continuing stigmatisation evidently seems to be education and compassion, continuing the legacy of HIV activists like David Kirby.
Although besides educational advocacy, another aspect needs to be addressed – the thoughts and opinions that we also have attributed to the condition.
We are sometimes asked to “check ourselves” when it comes to paying attention to our behaviours and opinions. When it comes to HIV, we first need to consider why a quarter of the public still seem to feel that their employer should have to disclose their colleagues’ status, why only a third can confidently say being told about the HIV status of a neighbour or family member wouldn’t damage their relationship, and also why only 3% feel comfortable being intimate with some living with HIV. And then consequentially consider what kind of out-of-date fears and misconceptions we also may have.