This year will be my 30th marking #WorldAIDSDay I'm going to keep this thread going with memories and reflections - if you've any questions please ask as if I don't know the answers I'll know someone that does.

Like most of us who were teens in the 1980s I knew about AIDs because there was a massive government campaign about it with leaflets sent to all homes, a famous TV tombstone advert, plus masses of negative and homophobic press coverage

There were lots of AIDs jokes, lots of misinformation, and people uncertain about what might cause or spread HIV. Despite the health campaigns I don't remember everyone being clued up on what HIV or AIDs was. And generally it was considered something that only affected gay men

Between 15 and 18 there were two things that got my attention about HIV and AIDs. One was the extreme amount of homophobia that was inescapable (I recall having a row with a neighbour for mocking Rock Hudson's death). The other was sexual health - an area I wanted to work in

But it was all pretty abstract. I didn't know anyone directly affected. My father did, however, and I know he found it difficult. An early sign his flying into a rage when one of my teachers devised a 'Study AIDS: don't fail through ignorance' revision tool. 'PEOPLE ARE DYING!'

At 18 I moved to Brighton because it was cheap and I felt I'd be welcome at the Uni there. Things rapidly shifted from abstract to real. Friends, guys I clubbed with, got sick. Often they had no family to support them. To cook them healthy food. Get them to hospital appointments

Sometimes people looked sicker, sometimes they didn't (at least not for a while). Some disappeared. Others wasted away. All were terrified and often so alone. Charities and healthcare tried to help but often healthcare workers, neighbours and employers were awful

For me the start of working in this area was quite basic but very necessary. It was shaking buckets to collect money, it was gathering food donations, it was cooking meals, or doing laundry or cleaning up for people at home.

When you're very sick cleaning soiled sheets, or finding fresh ones, or having a bath, or preparing a nutritious meal are all well out of your reach. Being able to provide this was vital and a hidden army of people were doing it.

There were a lot of funerals.

I'm not sure when it started, I don't recall anything formal, but myself and others started sharing safer sex information. We'd photocopy articles from magazines that were helpful and pass those around. Or we'd make our own information leaflets. Some hand drawn. I typed a lot.

We definitely did a lot of peer education without being asked or trained. Which was why some of it was excellent and some of it really terrible. All of it well meaning, though.

I used to go to clubs a lot and hand out condoms. That was for a charity although I can't recall which one. This outreach involved giving condoms to gay men plus a cheerful pep talk about how great safer sex was and how much more fun they'd have with a condom.

In fairness the guys always accepted the condoms with good grace. No idea if they used them because the goal was on giving out condoms, the assumption they'd be used. Nobody thought to show men how to use them because again it was assumed they'd just know

Let's blame Madonna for the next part. Yes, we did go around saying 'hey boys! don't be silly, put a condom on your willy'
That tended to work better wandering around outside clubs and bars. Nobody could hear you if you tried that line inside ;-)

There was a shift in grassroots advice giving, however. Public campaigning (which came too late for many) was serious, dramatic and doom laden. While it aimed to reduce stigma, it reinforced it in some ways. Community activism tried to shift to something a bit more fun and sexy

As in you might be able to avoid infections if you took steps to look after your sexual health. And you could do that and still enjoy sex. Who knew?

Which is why, in the autumn of 1990 students starting at Sussex University were given safer sex packs that included dams, gloves, condoms, lube AND a safer sex tips menu including the unforgettable 'bugger my toe'.

By now community advice giving/activism was recognising lesbians also needed safer sex info (not so much bisexuals and Trans people who were largely left out). We were focusing much more on safer sex being non penetrative, non ejaculatory and fun, fun, fun!

If I'm honest I don't think anybody really bought into what we were offering was really all that fun.

We weren't great on consent. It was assumed everyone was having sex, everyone might get HIV, so everyone needed to know how NOT to do that. If you'd not had sex before, or didn't plan to ever, or for a while, too bad. You still got the packs and enthusiastic safer sex tips

btw despite having a range of safer sex activities to try, I'm not sure folk we told about them did them, and I'm pretty sure we didn't. Although my friend tried 'bugger my toe' with her girlfriend but her girlfriend slipped and kicked her in the arse so they didn't do it again

anyone working in healthcare but especially public health should recognise a similar pattern. We were enthusiastic, poorly supervised, not remotely reflective, had no audience feedback, and didn't evaluate anything. Actions - as in giving out condoms and safer sex tips = impact.

I probably ought to explain but 'bugger my toe' if you hadn't guessed included penetrating your partner's anus with your toe. For some reason you could do that without any covering, but if you wanted to do any fingering of any holes you'd need to glove up. Gave out lots of gloves

People tended to grab condoms and lube quite enthusiastically. Gloves they tended to question or grumble about more. Dams even more complaints - we had flavoured ones but they really only tasted like sugary rubber. We had a mantra "no glove, no love".

There was resistance. People complained condoms and dams spoilt the moment, reduced pleasure, weren't very sexy. Our response (which was increasingly public health influenced) was to tell people they were completely wrong and reinforce how *great* barriers were

As more people wanted to help/offer advice there were inconsistent messages - so some focused on safer sex, others on pleasure, some on rights and responsibilities; and alongside this were those that were homophobic who wanted to shut down any kind of support or awareness raising

We're familiar with red ribbons as an emblem for World Aids Day but early on selling them proved tricky. You might get some people to buy them but they may not feel able to wear them. Others would target sellers or those wearing ribbons with abuse - shouting, shoving, spitting

A couple of years ago a man called me a 'filthy Aids bitch' for wearing a ribbon and it surprised me not because he was so foul, but because I'd been wearing ribbons for many years without that kind of nonsense. In the 80s and early 90s it was rife.

The flip side, of course, was it could seem a bit edgy and cool.And open to commercialisation.Fancy, jewel encrusted ribbons could be purchased although not always raising funds for Aids charities.Some celebrities were genuinely committed to raising awareness. Others, not so much

If you've spotted a lot of what I've talked about so far seems aimed primarily at white, gay men. You'd be correct. Much of the awareness raising did not include people outside this group (or cohort to use medical speak which crept into the discourse somewhere along the line)

This meant that safer sex advice, or information about health and rights was not tailored to lesbians, to bi or Trans people, to sex workers, or to those who were disabled, or Black or People of Colour.

Latterly advice did begin to be created for (but largely by) excluded communities. Minorities within minorities. But it took time and that delay was life threatening. Stigma and fear of repercussions also meant community activists weren't enabled to support each other

Unsurprisingly people felt they were being preached to by folk who had no understanding of their needs/situation. And no real avenues to share that. Anger certainly started spilling over (rightly) at many Aids conferences around the slow pace of treatment, research, information

Inconsistencies in advice also happened globally. In some countries you'd have provision of information, condoms, needles etc. In others people were being told simply to be faithful or failing that, abstinence.

Funding, government pressure, influence of charities and in-fighting between organisations meant inconsistent messaging. Care not always being delivered promptly or effectively. And often people feeling they couldn't speak out - at least not if they wanted to keep their positions

From ad-hoc, community based, not always coherent practices came more streamlined, on-message, branded activities. Favouring those who were affluent, educated, energised. But also creating divisions and difficulties which often held up progress.

I should repeat again at this point these are my memories, so other people working in the area will have different ones. If you want to share your experiences please join in - especially if you're outside the UK.

"All the people I was kissing
Some are here and some are missing
In the nineteen-nineties
I never dreamt that I would get to be
The creature that I always meant to be
But I thought in spite of dreams
You'd be sitting somewhere here with me"
#WorldAIDSDay https://vimeo.com/27877751 

30 years ago we couldn't have dreamed for this kind of health news: "UK smashes target for reducing transmission of HIV".
https://meanshappy.com/uk-smashes-targets-for-reducing-transmission-of-hiv/

Figures to be proud of, tho work continues.

But I wish our loved ones lost so needlessly could still be with us.
#WorldAIDSDay

Based on this thread someone messaged me asking if I had been tested and if so what was my status? #WorldAIDSDay
Yes, I've been tested several times for various reasons (different partners, during pregnancy, a chronic illness nobody could agree a diagnosis for). Negative results.

Which reminded me in the early days we often say we'd been tested but not the results - so those who didn't have HIV couldn't be differentiated from those who did. It was aimed at reducing stigma, but introduced barriers because life for those who were HIV positive WAS different

It became hugely important to fight stigma to be able to talk in strong, authentic, clear and empowered ways about living with HIV. And also living with Aids even for those who knew they were dying. Being a bit coy about testing/results really just emphasised privilege.

There was a long phase of insisting everyone had to disclose *everything* to new partners - all your sexual history, any infection statuses, if you used needles etc. This was in the upbeat 'be open' stigma reduction/safety ideal. No thought how it put people at risk of violence

This was brought home to me when I'd spent years encouraging people to be vocal and open about their HIV status, but when I had to do the same about being a hepster I found it wasn't quite so easy. (Not saying HIV and Hepatitis are the same, but there's a lot of stigma overlap)

#30years #zerohiv #worldaidsday