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HIV has been an issue for 30 years now, it’s not some infection that we recently found out about, in fact many of us haven’t known a world without it, yet the stigma, and misinformation that continues to spread today is ridiculous.
The other day my mum was telling me how a church congregation were debating whether to continue to do communion for fear of people who were HIV positive in the church (knowingly or not) infecting other church goes. It get’s worse. One of the women in Church who is HIV+ agreed with this because her doctor told her that she could infect others with her saliva.
Yes really. It is true that there is HIV in all bodily fluids but a little bit of research (just on the internet too) would tell you the risk associated with this – pretty much none. So how is it possible to have people believe this nonsense? And spread it around?
I think there have to be so many different HIV campaigns running concurrently that deal with prevention, information, and stigma – because the messages still aren’t being heard. Possibly because people try to save money and roll it all into one campaign. It is funny how misinformation spreads faster than the truth…
Anyway, that was my latest shocker.
I’m off to Zambia on Monday. I wish it was under better circumstances, but it’s to go and be with my ill brother, to spend some time with him and help him get better. At the same time I think it will be a good time for me to go and get a reality check.
When your work revolves around HIV prevention for young people, it’s kind of hard to do it effectively when you’re 1,000 of miles away from the problem and not getting a sense of what’s happening on the ground. Yes I read the reports and the briefings and try to keep up to date with what is proving to work and what doesn’t work. But whenever I go back to Africa, or any region with high prevalence rates, you sometimes get the sense that some of those reports are just words. You can’t know for real without seeing and experiencing the impact firsthand.
Working to improve the lives of people, whether it be through poverty, infant/maternal mortality, sexual health etc, is hard. It’s hard because even the small progress made is still insignificant to the problem. It almost seems insurmountable. And then when something hits home – especially for those of us who are personally invested in these issues, you get the feeling of ‘why do i bother? if nothing is changing, why do it?’
I know for some people this is a job, for me this isn’t just a job, it’s a huge part of my life. And if we’re not going to get it right, why are we doing it?
Don’t get me wrong, I’m not demotivated, I’m just feeling challenged. So while I’ll be taking a time out to be with family, I hope I’ll come back re-focused, with some lessons learnt that I can incorporate in what I do.
Anyway, I’ve hardly been that regular with my blogs these last few weeks, but hopefully I’ll come back full of stories to tell!
Today my sister said to be that the silence around HIV in families kills. Despite the fact that my sister usually is a bit of a drama queen today I thought she was actually right.
A family member disclosing their HIV status is a scary thing – for both the person and for the family. In the last few years I’ve personally been affected by HIV more than I ever would have considered possible. Not sure why, I am from a country where 1 in 5 people are HIV+.
Some of these relatives are openly positive, others, while not in denial, not really talk about it or acknowledge it, no matter how many times it puts them in hospital. So what are you supposed to talk about? I don’t think talking about it is easy, and sometimes I do wonder what you’re supposed to say. This is yet another problem with the virus, its become an inaccessible topic.
We do need to be talking about management of the disease, what sort of support our friends and family need, but often we don’t know how to bring this up. Almost fearful of the elephant in the room. There’s available information out there for people living with HIV, but what about for the immediate family and friends?
We want to help, we want to be supportive, we want to talk, but we don’t know how or where to begin.
Even now, having lost two brothers, I always wish I had said certain things and now it’s too late. I don’t want it to be too late with other relatives. So I guess you just take a deep breath, open your mouth and just speak.
I’m trying not to feel jaded. It’s hard not to when I try to think of the good tv programming on HIV/AIDS – that isn’t a predictable, done before format.
Is it because HIV/AIDS is such a difficult issue with loads of political ramifications? Is it because people don’t care? Or people are too scared to offend some people?
I really don’t know what it is, but sometimes, I wonder what the end goal is with some programming ideas. I’m not talking about any shows in particular, just generally thinking of what I’ve seen in the last few years.
I did like the story line in Greys Anatomy which was set back in the day when AIDS was called GRID. That was good because it looked at it from the stigma point of view, but then brought into perspective other discrimination/stigma from the day i.e. inter-racial dating, black and female doctors being the first of their kind etc. (not first, but you know what i mean). And I thought that was good because it put it into a context that people could relate to. It just made HIV/AIDS more accessible i think.
That’s one of the things I struggle with – definitely for the audience I have to reach – how do you make HIV/AIDS accessible? The reality is, that while there are millions of people living with the virus, and countless other affected by it, there are even more who are not infect and seemingly unaffected. That’s the audience I want to reach, because in this day and age, in the global world we live in, how can you think you’re unaffected?
I want to re-establish the African thinking of ‘it takes a community’. We, as a people, inhabiting this planet are the community. Call me the eternal optimist (in all my cyniscm), but I do believe that if humanity comes together we can stop the spread of HIV and at the same time create an environment that protects and supports those already living with the virus. But people have to want to do this, people have to be moved to do this. We need a new generation of people who care about us and not about me – the ‘we, not me’ generation (as coined by someone in the office). And I do think that media has a big role to play in making this happening. Aaaah if only had had loads of cash myself, the programming i’d make! one day…
People, especially in the health sector, claim that scare-mongering doesn’t work when trying to communicate prevention messages. I’m not so sure I agree with this. Time and time again the ad that people, certainly in the UK, remember regarding HIV is the Tombstone PSA. You watch it today and think it’s just plain ridiculous – the grim reaper killing people like it’s a bowling game! But something about it worked.
Then today, you read about the woman in Detroit who created the hoax video about how she had slept with 500 men and infected them all – people’s boyfriends and husbands, just to drive home the message that you could be the partner of one of these men. People called it in, fear of a public health scare. But the testing clinic in Detroit saw its numbers jump significantly after over 17,000 viewed the spot. Surely that’s done more for HIV than some other more pc campaigns have done?
I do think people respond to basic emotions and fear is one of them. Yes you have to be careful not to preach the HIV+ = Death message, but the reality is, unfortunately, that if you have HIV you are going to die. Having lost relatives and still have relatives afflicted with this virus, I hate to say that, but we’ve got to be realistic. This isn’t a nice virus we’re dealing with, when it’s bad, it’s bad.
I think you need to use different tactics/messages to reach different people and some people do respond to fear, we can’t get away from that.
Messaging is really hard to deal with, but I think I’d focus more on longer formats, like documentaries and films or drama series, because then you can focus on the complex nature and issues that surround the virus. Maybe there’s a way you can tell people that if they get HIV they will die (eventually) without telling that that they will die and putting the fear into them.
During our brainstorm we were addressing issues/themes we should focus on and someone suggested living positively. And this is where i’m going to be (slightly) controversial. I wasn’t totally sold on the idea. I think it’s something we need to promote, for people who are already positive, but I have concern about promoting it to people who aren’t infected. Having recently lost my brother to this deadly virus and seeing what he suffered through, I believe that it’s time to go back to talking about the reality of living with HIV/AIDS. I don’t mean scare tactics, though in some cases, is there a difference?
I think we need to get people, especially young people, to understand what it truely means to live with the virus. How your life changes, your family and friends want to support you, but don’t know how, the complexities of dating, when to disclose your status and to who? The implications of the medicines, if you have the opportunity to access them in the first place. I think it’s important to support our brothers and sisters living with the virus, but being too politcally correct, i.e. ‘we don’t want to offend PLWA’ is also irresponsible in my opinion. Complacency is partly a consequence of pushing the ‘living positively’ message.
I’d like to see us handle it in a different way, to show a rounded picture of living with the virus – the good, the bad and the ugly. Let’s see if we can get the funding to do that, hmmm.
Written and produced by my very own brother, this is probably Zambia’s best serial drama with strong HIV/AIDS messages. Here is the documentary about the launch of the campaign, will seed a few episodes too, but this is just a taster…
A project that i don’t work on directly, but really is quite a great one is the Staying Alive Foundation. The Foundation’s mandate is to empower young people on the frontline of the epidemic by providing them with grants to use to educate their peers or create environments that challenge stigma and discrimination of people already infected with HIV. We look at it like a domino or pyramid effect – you educate one to educate one more, to educate another and so on and so on.
Here is a video that highlights some of the work the foundation has supported. Enjoy – let me know what you think of these videos too.
another one for the night – yep i’m mad busy since i discovered visio -making calendars and wireframes, so hope this piece from sex uncovered will keep you occupied for now. Charles and Johnny talking about comming out. WARNING: Strong language