“HIV STIGMA” SO LAST CENTURY, LITERALLY.
CALL TO END STIGMA: Liverpool Echo June 1987
Hitting the London gay scene and being sexually active from around 1999 I recall HIV/AIDS wasn’t being talked about as much. The only reminders I had of HIV were charities at the exit of G-A-Y Astoria handing out HIV literature and condoms on a Friday night. And along with Heaven and the old haunts of Old Compton Street in Soho, HIV was hardly, if ever spoken about. By this time it had been over a decade since the UK government’s AIDS: ‘Don’t Die of Ignorance’ campaign and eight years since the passing of Freddie Mercury.
OXFORD DICTIONARY: Definition of ‘Stigma’.
Looking back now I wonder if perhaps ‘AIDS’ fatigue had set in and society, especially the gay community just yearned for ‘normality’ just like post Covid-19 and the national covid lockdowns. And while I came across PLWHIV [People Living with HIV] in my life it was 2013 when I entered a two-year relationship with an HIV-positive man. We rarely spoke about his HIV or his experiences with HIV given there wasn’t really much to it. He took his daily medication and that was that, easy! He answered any questions I had as I was HIV negative and I was able to read up on U=U on the internet. AIDS and HIV was no longer a death sentence. He mentioned the odd story of ‘stigma’ given he was from a small coastal village on the Portuguese island of Madeira. But he was very much like me, with no heart and a skin of steel he didn’t let these incidents of stigma bother him. And with a tut and a roll of the eyes, he’d say “ah, who cares”.
And since my own 23 Days to HIV diagnosis, I have rolled my eyes exhaustedly at the phrase ‘HIV stigma’ that seems to be bandied around in every HIV conversation. And it doesn’t go unnoticed that this phrase is often shared with good intention by a stoney-glazed expression from either PLWHIV or charities and organisations relating to HIV. I find myself upon hearing “HIV Stigma” immediately and automatically tapping out as though my brain is filtering out a view or opinion on something that is no longer a reality in society today. Subconsciously reserving what megabytes I have remaining in my tiny mind. However, whenever someone recounts “HIV stigma” from observations or their own experiences at a time when such stigma was a reality I am literally all ears, they have my undivided attention.
Since the launch of my book, it has pained me to use #Stigma or mention ‘stigma’ in reference to HIV across various platforms and the book itself. I do recount in the book in a conversation with Jack that I did not believe that being blackmailed for having “AIDS” [HIV] could be considered ‘HIV stigma’. For it to be stigma the individual would have to have a genuine fear which usually manifests from a lack of information and/or disinformation and there has ‘not’ been a lack of information on both AIDS or HIV for over 20 years now. But with my toes curled I referred to it as HIV stigma for ease with the hope of challenging this at a later date. I find it incredibly fascinating that the science around HIV and AIDS has advanced yet equally disheartening that HIV charities and organisations still push that ending “HIV stigma” is their goal.
CLICK TO ENLARGE: Echo 1987
So given the media is, and always has been the main influence for imparting information and at times disinformation. I thought I would search the British newspaper archives to establish stories and articles on ‘stigma’ relating to HIV/AIDS. I conducted ‘exact’ searches for “AIDS stigma” and “HIV stigma” printed in British newspapers across regional, national & tabloids. I felt these terms were relevant in seeing when society started to discuss the impact of stigma from the AIDS pandemic on individuals affected or associated with AIDS or HIV. And my investigation is by no means scientific nor definitive, but I feel it gives a general picture of how stigma played out within society, and the results I found to be quite interesting.
1985 was the first mention of “AIDS stigma” I could find although it is in no way deemed definitive. The article was in the Aberdeen Evening Express on 26 September 1985. The strapline reads “AIDS Danger of the men who live a lie” and the story purports to be concerned that heterosexual men who have sex with men and bisexual men will pick up AIDS and pass it to heterosexual women, girlfriends and wives. ‘AIDS stigma’ is cited by Dr. Downie who remarks “I am not particularly worried about it [AIDS] here. This community is relatively small and the medical services are excellent”. The article goes on “She [Dr. Downie] said the most distressing aspect was that publicity had stigmatised everyone in the high-risk groups -especially homosexuals - as AIDS victims”.
SUNDAY MIRROR 1985: Firemen ban kiss of life
JAN 1987: Princess Diana to open worlds first AIDS ward
The first article I could find where there was an actual “call” to stop HIV/AIDS stigma was in June 1987 when the Liverpool Echo published a story with the strapline “Call to end stigma against disease [AIDS] victims”. And while this was a start at tackling stigma it was a story from actress Elizabeth Taylor in America appearing in a UK newspaper. There are many stories in the press of 1987 relating to ‘AIDS stigma’ in the UK. This is in reference to people not willing and/or reluctant to get tested in fear of the stigma that was now evident around AIDS should they test positive.
And when I searched “AIDS” to see where this stigma was coming from within the media. I scrolled through story after story with each headline becoming more ghoulishly sensational than the last. I was aghast while sitting in the safety of my own home with a cup of tea to hand. That the very people who dedicate their lives and careers to keeping us safe were themselves fuelling the fear and stigma around AIDS.
Firemen across the nation in 1985 ban life-saving mouth-to-mouth in fear of catching the “killer disease AIDS” despite an AIDS specialist, Dr. Glover advising they could not acquire HIV/AIDS through saliva.
The article states around 1,000 lives a year were saved when the fire brigade responded with mouth-to-mouth. A union chief for the fire brigade said “We believe our men are at risk. Our ban might mean some victims won’t survive, but we can’t take chances”. The article goes on to state that other methods of resuscitation would be pursued and that 54 people have been confirmed to have died due to AIDS, nationally. The newspaper referred to AIDS as the “gay plague” and that the fire service is “…refusing to make vital safety inspections on gay clubs”.
CLICK TO ENLARGE
Several years later when you’d hoped by the time of this story in March 1988 that the nursing profession would have fully understood HIV & AIDS and the stigma around the disease. A story in the Daily Mirror highlighting steps being made to tackle AIDS stigma by the Royal Free Hospital. Had decided to integrate AIDS patients into a ward without segregating them from other patients. A spokesman for the hospital said, “We want to integrate AIDS patients to get rid of the stigma under which they suffer". Yet, the irony was the nurses working the wards were allegedly “furious” with their spokesman stating “We are very worried about this”. Or that’s how the story comes across to the reader?
Given that the good old British press has left me unsure of what the actual story here is. This small snippet says more to the reader with the 4 bold words in the strapline than the actual text of the piece. My view is this is the press stoking the stigma rather than actually trying to tackle it by better informing the public. Are the nurses battling their own stigma & fears of catching ‘AIDS’ by having to treat these patients in their final days? Or perhaps the story is most likely the nurses are concerned with the surge in AIDS stigma by 1988 and the reaction of the other patients & their visitors that are said to be “drug users”. Individuals that may perhaps be volatile towards AIDS patients by placing them in the path of AIDS stigma ensuring an unecessary and undignified end of life. Was the burden on these AIDS patients to fight this stigma? For me, no. And I wonder if this was also the concern of the nurses.
And while the graph above is not scientific by any means. It does document my findings that outline the frequency of articles and stories citing “HIV Stigma” or “AIDS stigma” in both UK regional and national press. There is no escaping, even today that society is influenced by what it reads, views, and hears within the media. Searching the British Newspaper Archive for articles citing “AIDS Stigma” within the story shows this surged between 1985 to 1987.
And it can not be a coincidence that in 1987 when Princess Diana famously shook hands with an AIDS patient. While opening the UK’s first dedicated ward to AIDS at London’s Middlesex Hospital. That you see a decline of the phrase “AIDS stigma” within the press until it starts to surge again in 1990. And in the same year, 1987 despite there being no real effective treatment for HIV or AIDS there is an increase in the phrase “HIV stigma” within the newspapers. Perhaps an indication that the media and society had become a little more educated with the scientific advances in understanding the disease and distinguishing the difference between HIV and AIDS. Also as there was an uptake in testing and those testing positive were diagnosed as HIV positive as they were not in the stages of an AIDS diagnosis meaning “HIV stigma” is cited more frequently in stories.
CLICK TO ENLARGE: Diana December 1990
The term “AIDS stigma” did have a resurgence in the early nineties and I suspect this was in part due to notable figures across the globe and in the UK dying from AIDS and/or an AIDS-related illness. Ian Charleson & Keith Haring in 1990, Freddie Mercury in 1991. In the same year, the conservative government made £42 million [£88.5 million Jan 2023] available for those affected by the contaminated blood scandal. Which also saw an increase in individual stories on the contaminated blood scandal and those that had come together to campaign for reports, investigations and litigation.
Princess Diana continued with her work with the HIV and AIDS community although there are fewer articles of her official visits/duties relating to HIV/AIDS in the press. Hounded by the media as she was, a paparazzi photo of Diana going about her normal life with no real story was often captioned with some of the work and causes she was passionate about or had undertaken that week. Her dedication to HIV/AIDS meant “HIV Stigma” or “AIDS stigma” was cited beside a paparazzi photo. Diana’s popularity to sell newspapers especially when the Queen ordered Diana and Charles to separate in 1992. Seems to be partially why “AIDS stigma” continued to spike that year as the press highlighted Diana’s previous work on AIDS and AIDS stigma. Would continue despite the separation/divorce and her status within the royal family.
A couple of years before Diana’s death in 1997 saw a decline in “AIDS stigma” being cited in the press. The media focused more on her divorce being finalised in 1996, her humanitarian work with landmines, and her personal life including speculation about her romantic life. Also, the NHS documents 1996 being a year when antiviral treatment became more effective with better outcomes. This was despite the first antiviral drug for HIV being available on the NHS since 1987. And despite Diana’s death in 1997 “AIDS stigma” continued to appear in obituaries and articles celebrating her legacy within the HIV/AIDS community. Often citing that ground-breaking photograph of Princess Diana shaking hands with an AIDS patient at the Broderip ward at the Middlesex Hospital.
By 1999 “AIDS stigma” in the press fell and levelled out along with “HIV stigma” which also fell leaving the two rolling into the new millennium virtually ‘undetectable’. It seemed that even the old crusty journalists could not rely on selling newspapers with a sensational “AIDS" headline given scientific advances and campaigns had educated society. Seemingly society had come to terms with living with HIV now there was an effective treatment and HIV/AIDS was no longer a death sentence. And this seemed to be my own account on the ground of the gay scene in London where HIV/AIDS was hardly ever mentioned. And by 2009 articles citing “HIV stigma” or “Aids stigma” had almost fallen away so much so you’d be forgiven if you thought it had gone away entirely. And during the 00s there was less of a focus on HIV and the gay community and instead those associated with the contaminated blood scandal. Who continued to campaign and received backing from government officals past and present in their fight for justice and accountability.
From 2000 to 2009 only 1% of the articles citing “AIDS stigma” are English-based regional and national newspapers given 99% were Irish. Scrolling through the Irish articles it seemed many of the articles were still referencing HIV/AIDS stigma along with citing the “church” in regard to religion and/or “village” in relation to HIV and AIDS stigma within small communities. It seemed religion, cultural beliefs, and small communities were a concern for people living with HIV in Ireland now they were on effective treatment and having to face this prejudice head-on given HIV/AIDS was no longer a death sentence.
It is clear that both “HIV/AIDS stigma” was definitely left in the last century. HIV charities and organisations still say today in 2023 ‘just because it’s not spoken about doesn’t mean it has gone away’. Well, I’d argue that if the media can’t find an audience for HIV/AIDS stories that promote stigma and/or are not reporting stories of HIV/AIDS stigma. Then it is a pretty safe bet that it has ‘gone away’ or at the very least ‘HIV/AIDS stigma being a pandemic all of its own, like most viruses it has ‘mutated’. HIV stigma is now, a ‘weapon’ that is on rare occasions used maliciously against us, people living with HIV.
Since the internet and handheld digital devices, we have all been able to fact-check, cross-check, and delve for further information in an instant. We are more open with our friends and family to seek advice and opinions with an instant click and a ping, often receiving a response within minutes if not hours.
When the internet was truly accessible within homes and internet cafes (remember them? I used to fall out of G-A-Y Astoria and sometimes hit one of the three 24-hour easyJet internet cafes on Oxford Street. MSN chat rooms, remember them? ASL? [Age, Sex (just the 2 genders), Location?]). The internet was exciting and really got addictive with the birth of social media shortly followed by the birth of the “keyboard warrior” that fell out of the vagina of cyberspace!
Boomers (born 1944-1964), Gen X (born 1965-1979), and Millennials (born 1980-1994) will have either experienced the AIDS pandemic firsthand. Or like me (born 1982) ‘Millennials’ and the second half of Gen Z will have lived through the AIDS pandemic very much unaware of what was unfolding. I remember seeing the AIDS: Don’t Die of Ignorance TV advert and the gloomy and harrowing noise of that advert living with me for the rest of my life. Along with the HIV storyline of Mark Fowler in Eastenders and the odd needlestick injury on The Bill. We were also subject to extended sex education classes that included the risk and dangers of HIV through unprotected sex. Along with four weeks of a 30-minute period on the education of drug use and the risks and dangers which included HIV. I remember one lesson the class knob-jockey James Reed shouted “my dad said only queers get AIDS sir”! The science teacher Mr. Andrews snapped out of his gloomy mood of having to front this lesson and spoke of HIV and AIDS at length dispelling the myth only ‘Queers got AIDS’. Apart from the class knob-jockey c.1994, there was not much HIV/AIDS stigma within my teenage years as we were too young to have witnessed how stigma affected people to take pleasure in inflicting it on others.
A GENERATION: Review It’s a Sin
As for Gen Z (born 1996-2015) HIV and/or AIDS would have come by second-hand accounts no doubt through sex education at school or accounts from family, friends or those affected by HIV/AIDS. And failing those encounters then no doubt they will have heard of comparisons of HIV and the AIDS pandemic compared to that of the covid-19 pandemic. Along with the airing of It’s a Sin by Russell T Davis in 2020 which attracted a large Gen Z audience with the appeal of Olly Alexander as the lead in the show. And failing all of that, if for some reason they state they have no idea what HIV or AIDS is, then I am certain they are not the ones weaponising someone’s HIV status on the basis of the fears and stigma of the past.
IGNORANCE = FEAR: Keith Haring 1989
Artists Keith Haring’s 1989 ‘Ignorance = Fear” is absolutely spot on for its time. ‘Ignorance’ is defined as a "lack of knowledge or information”. For the last 20 years at least, there has been a wealth of knowledge and information on HIV/AIDS. Therefore ignorance can not invoke ‘fear’. And ‘silence’ no longer equals death, as HIV/AIDS is a manageable condition that allows us living with HIV to live a normal life with a normal life expectancy.
Keith Haring’s work is incredibly remarkable if not powerful and rightly has a place within the history of AIDS and HIV activism. But this shows how the messaging of ‘HIV stigma’ has no impact nor relevance today as it did then.
Simply put, ‘anybody’ who uses someone’s HIV status against them, an employer, work colleague, doctor, nurse, teacher, family member, friend, romantic interest, etc. All do so on the basis of their understanding of the fear and stigma relating to HIV/AIDS of the past. If they don’t understand the fear and stigma of the past or have never heard of HIV/AIDS then they wouldn’t use this ‘stigma’ against someone. Nobody can claim to be ignorant on the topic of HIV/AIDS given we all have the internet at our fingertips. We are all guilty of using Google instead of our GP to look up injuries and ailments to self-diagnose and “HIV” and “AIDS” are just as easy to google for anybody claiming to have a lack of understanding of the disease.
THT 2023: London rally “fighting HIV stigma”
Society is influenced by what it reads, views and hears and they have not heard “HIV stigma” or “AIDS stigma” in recent years as much as they did back in 2000. Therefore it is evident that “HIV stigma” has very much been left in the last century, literally. With amazing scientific advances in HIV medication and the emergence of U=U (Undetectable = Untransmittable) where medication suppresses HIV to undetectable levels. This means HIV can not be passed on through unprotected sex. HIV charities, representatives, and organisations still claim HIV inequalities exist due to “HIV stigma”.
And PLWHIV have come accustomed to declaring every negative encounter is because of their HIV status and therefore it must be “HIV Stigma”. I can not help but wonder if PLWHIV fears that if we declare “HIV stigma” no longer exists, or is so scarce to the point of being at an ‘undetectable’ [isolated incidents] level. That this somehow undermines their HIV status and who they are as an individual if society thinks “HIV stigma” has gone therefore so has HIV by default.
Given HIV and HIV stigma have been associated with each other since 1985. I wonder how confused, jaded if not disengaged society is when hearing the phrase “HIV stigma”? And this is no more evident than in the recent experience that led me to write this post. On being invited to talk about my book, I mentioned “HIV stigma” at the outset and was immediately interrupted by the guy in his early twenties with “yes but I thought it wasn’t a death sentence anymore”? I asked, “who mentioned death”?
As we discussed this it became clear that while HIV charities and organisations try and promote the advances of U=U. This is most likely being hampered as in the same breath they promote that “HIV stigma”, a relict of the AIDS pandemic is a fight they are still “fighting” today. Surely this comes across as a contradiction? In one breath you are telling society that unprotected sex with a HIV positive person who is U=U can not pass on HIV. But at the same time the mere mention of “HIV stigma” triggers its historic association with the AIDS pandemic, the very ignorance, fears, and stigma of the 80s and 90s. Suggesting there is still something to be concerned and fearful of.
I have spoken with many people living with HIV and listened to their own experiences deemed to be ‘HIV stigma’ between 2005-2023. I have found it hard to agree with any one individual that this was ‘stigma’ and was more individuals or organisations ‘weaponising’ someone’s HIV status. And on the basis to be malicious, to get a reaction, to cause upset or achieve a goal such as seeing a PLWHIV remove themselves from a certain situation, church, job, relationship etc. And when I ask how it was ‘HIV stigma’ they often reply “I just knew”. In many instances, they shared they ‘felt’ they were treated differently because of their HIV status without any evidence. Such as an employer knowing their HIV status and being horrible to them at work. I mean this could be they just don’t like you, not necessarily because they know you are HIV positive.
Many PLWHIV have something called ‘Self-stigma’ and I too had this for around 3 days after diagnosis. But for some PLWHIV self-stigma can stay with them years after diagnosis and is incredibly hard to shake off. For example the day of my diagnosis I got home and jumped in the bath to relax. As I lay in the water I felt disgusted that I had HIV coursing through my veins under the skin of my body. A day later I panicked when I got a paper cut on my finger and despite living alone I was worried I’d infect someone as it was bleeding. Pulling on my dark sense of humour I laughed out loud that I couldn’t infect myself as I was already infected. But I’d argue ‘self-stigma’ is a burden for the individual and not for wider society. And I suspect HIV charities and oranisations using the term ‘HIV stigma’ ensures PLWHIV associate self-stigma with the ‘stigma’ of the past where they state they believe they are a threat to others, infections and that nobody will want them etc.
“HIV stigma” needs a rebranding and it needs to complement the message of U=U. As I experienced with my own HIV blackmail, this was classed as an act of discrimination and malicious intent, nobody associated it with stigma. Yet under the definition of stigma, the blackmailer used my HIV status as “a mark of disgrace associated with a particular circumstance [AIDS pandemic], quality [my blood is HIV positive], or person” [I am a carrier of HIV].
My blackmailer could not claim ignorance as he first had to be aware of what AIDS and HIV were in order to make reference to them as he did. This was not stigma despite it fitting the definition of ‘stigma’ instead, this was ‘weaponising’ my HIV status. I am sure if the HIV charities and organisation came together they could come up with a more appropriate term, phrase or slogan. Language that steps away from ‘HIV stigma’ that was a pandemic all of its own. Re-engage society in educating a small minority that weaponising an individuals HIV status is not acceptable.
I do recognise that ‘HIV stigma’ is still relevant in some parts of the world such as third world and developing countries where they experience serious inequalities in accessing HIV treatment and education. South Africa itself has had a challenging yet inspirational HIV history given individuals fought long and hard against the obstacles they faced. And in stark contrast to Terrence Higgins Trust which is spearheading a coalition of charities in 2023 with a rally titled “FIGHTING HIV STIGMA AND PROUD”. In 2021 MSF UK (Medecens Sans Frontiers - Doctors without borders) published an article titled “FIGHTING FOR TREATMENT - A history of HIV care in South Africa”.
2021: SA Fighting for Treatment
2023: UK Fighting HIV Stigma
I am astonished, if not embarrassed that here in the UK, a developed and wealthy country in the western world has the audacity to allege we are “fighting HIV stigma” when many people do not have equal access to HIV treatments. The United Kingdom with a population of over 67 million [2022] and just over 106,000 [AIDSmap 2022] people living with HIV in the UK.
The 2021 article by MSF UK they state in February 2000 against opposition MSF and partners opened a clinic in Khayelitsha township, Cape Town. Dr Goemaere shared;
“By the middle of 2000, a few months after we had opened, we had registered several hundred people as HIV-positive,” says Dr Goemaere.
“We were only seeing the sickest of the sick – those who were absolutely desperate. People were brought in on stretchers or in wheelbarrows. The waiting room was packed. Stigma dropped very rapidly because suddenly people realised – it’s not only me…”
I am sure at this point it won’t come as a surprise that I will not be attending the rally on 18 March 2023 as someone living in London and living with HIV. Under the premise of “Fighting HIV stigma and Proud” I would not have the gall to consciously look society in the eye and declare that I am “fighting” something that, on a whole, no longer exists.
FIRE TRIANGLE
MY HIV STIGMA TRIANGLE
And as I came to the end of this post I remembered the ‘Fire Triangle’ seen year after year in workplace fire training. A simple diagram that highlights the elements that a fire needs to exist. Remove 1 element and you have no fire. I wondered if this blog post could have been summed up with the same principles and the 3 major contributors to the stigma around HIV/AIDS.
