Infectious is a loaded word. It immediately recalls ideas of contamination, being tainted, a threat to others, a danger, something to be contained and controlled, with great risks . Whenever I read something about HIV or I attend a conference or a discussion around HIV this word hits me again and again. The number of HIV infected individuals, the risk of infection, the questions around how the infection is spreading, how to stop the infection, who infects who. The fear, the shame and the blame of being somebody with HIV are reinforced whenever I hear this word. I am aware that it derives from a bio-medical description of disease, that it merely describes an illness that can be passed by one person to another via a bacteria or a virus. But it doesn’t sound as simply a mere scientific word to me. It signals my place in the world as a person with HIV. Somebody who endangers others, who should be firstly feared and avoided. It doesn’t invite acknowledgment, solidarity, support, love. So every time I hear it I shiver. And to be sincere in most contexts I find it so unnecessary. Why can’t I just be described as somebody with HIV, not HIV- infected? Why can’t we simply say: passing, getting, acquiring HIV? Those simple words neutralize the negative emotions that are immediately created as the letters H – I -V are uttered. Emotions create words and words create emotions. Emotions shape our relationship with each other. If we change our language around HIV we can also change the way we live together in the world.
It is the 30 of November and a journalist has left several urgent messages because she needs a positive person to be interviewed for a prime time TV programme on World AIDS Day. I give her a ring.
- Hello I am Silvia, I am HIV positive. I was told you need somebody to interview tomorrow.
- Yes thank you for calling me back. I need some background information.
- How did you catch HIV?
( long pause)
- If I told you I got HIV from my husband, or if I told you I got HIV from injecting drugs, or that it was a one night stand, or maybe that I became HIV positive because my mum was positive… what difference would it make? I mean… after 30 years…. we all know how HIV is transmitted, right?
The journalist moves on to the next few questions. Before hanging up she tells me she needs to speak to a producer and she will let me know within next 20 minutes if I will be interviewed the following day.
Nobody called me back.
World AIDS Day came with a very dark cloud this year. It should have been a celebration of what we have learnt in the past 30 years, and how far we have gone. However, the cancellation of the 11th round of funding of the Global Fund to fight Malaria Tuberculosis and HIV has created a sense of doom and panic. Many of the advances of the past few years, with millions of people on treatment in Africa and Asia , could be set back by this. Millions of lives will be lost. It is like having to fight all the same battles again. It’s exhausting.
Networks of women living with HIV and their supporters, including the Global Fund, have developed a letter to the leaders of the G8 which has been translated, in less than 24 hours in 8 languages (including Chinese, Japanese and Hindi !). The letter can be read and signed by anybody who supports us, individually or as an organization here is the link:
Lack of funds was a feature not only on the international field, but also of our local reality. Positively UK is struggling and every penny counts. So this year we decided we would try and go in tube stations to rattle our cans and ask passer byes for spare coins and the occasional note, in exchange for a red ribbon.
I was totally dreading it.
We had to start at 730 am, and no matter how much coffee I drink I am at my most unsociable at that time. Luckily we were aided by some bubbly volunteers from Grey Goose Vodka. Not even the sight of my very cute volunteer put me in a good mood when I arrived at Euston Station just after 7. When I went to talk to the station manager my worst fears seemed to become a reality:
- ‘Morning… I am here for a charity collection, here is the authorization
- A yes, yes….Just keep out of the way, this station is very busy
- OK, will do…
- What are you collecting for anyway? People have no money those days, everybody is strapped up for cash…
- It is World AIDS Day, I am collecting to support People with HIV in the UK
- Well, nobody has definitely any money to give to THAT!
I just looked at the floor in anger.
So I went to stay at a corner while the Grey Goose cutie was at the other corner.
- World AIDS Day, World AIDS Day!
We shouted, while people walked by, trying to avoid us, not to waste time in the rush hour. When the first woman stopped and said ‘Oh my God I nearly forgot!’ and gave us a few pounds I felt a knot in my throat. For the first 15 minutes I found it really hard not to cry every time somebody stopped and gave me money. But after about after half an hour I toughened up and I was OK. Euston is the station close to my yoga school, where I go to practice every morning, so many of my friends from yoga passed by. From them I got money AND a hug.
We collected from 5 stations for only a couple of hours and we reached our target of £2000, which all considered is pretty good. So we will do it again next year. I am ok having had the experience, but I don’t think I am looking forward to doing it again!