A number of people seem to think there’s a certain amount of glamour and money that comes with being a HIV activist or advocate, but what’s the reality?

If I might quote from a recent post by our editor, Tom Hayes, on Facebook:

“I’ve seen some snarky tweets/statuses alluding that HIV activists/advocates (like myself) only do the work we do for the “glamour and money”.

Most months I don’t make enough money to feed myself. And I don’t find anything remotely glamorous about staying in budget hotels (that I often have to pay for myself) and talking about side effects like diarrhoea and nausea.

Some people really need a reality check, and to think about what they’re saying before they say it”

Do these people not remember what it was like in the early days? When you’d get thrown out of a bar just for saying that that you had HIV, or worse yet, AIDS? We ended up with a multiple diagnosis system because we didn’t understand what was going on (if we didn’t, how was anyone else supposed to?).

When I was diagnosed there was a club with an “anything goes” ethos which was popular at the time. Plenty of my friends and fuck buddies were regulars (I never went myself, I was too broke). I ended up with a rash over my back that was similar a rash my housemate had. He also had secondary syphilis so I was good and went to the clinic. “We don’t know what it is but we’ve seen a lot of it recently – have some calamine lotion.” was their response.

I didn’t think about it any further until I saw a photo of ‘sero-conversion rash’ on Wikipedia. Yep, that was it. By the time I was diagnosed, I’d already been infected for seven years. Had I been working for the glamour or money? No: there was neither in it. We were just concerned that this newly discovered virus, with such devastating effects, didn’t get too far.

We watched friend after lover after friend get sick and die. For the glamour and money. The fact that we slept on each other’s spare sofa’s and paid our own train fares is nothing to do with it. When my first husband got sick and we had the money to give back to THT, I felt such pride (his mother had just died and left him enough money for us to move into our own place).

We had a period when there seemed to be money for everything. I could have had £750 for recreation from THT Cymru, but insisted on refusing: the money belonged in kitchen equipment and extra towels and bedding and so on. (Don’t try asking again, because the system has changed.)

The money has run out: if you want a speaker for an event, can’t you find them a spare bed and give them a lift there? Get yourself a little kudos if you’re a lesbian and gay cafe by supplying catering for a conference? My rules are that I’ll pay for attending Living Proof (because my local social services won’t, even though the cost is way under what people with disabilities are entitled to), though since Living Proof has its own travel fund I’ll claim from that, I’ll pay up to £50 for a rail ticket (having already bought the Disabled Card myself). But there are events when, as a long term survivor, I think I could make a difference. Can’t get to them because they’re too far away. You know those charity jars on bar counters? Years since I have because I can’t afford bars (and get around them without help).

Remember that not all of us suddenly got better when protease inhibitors were introduced. I will fight like fuck for your friend’s life, but I can’t do it without your help. Or would you prefer to lean back and say “Shame about John – no-one could help him…?”.

Steve – (@rottiesteve on twitter)




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