Africa: Putting Human Faces on HIV/Aids
By, Cindy Shiner, allAfrica.com, May 19, 2008
The widely acclaimed book, 28: Stories of Aids in Africa, has been highly praised for humanizing the story of HIV and Aids in Africa for readers around the world. The book tells the stories of 28 people affected by the virus – one for every million of those believed to be living with HIV in sub-Saharan Africa. Stephanie Nolen, author of the book and Africa bureau chief for the Toronto Globe and Mail, told AllAfrica's Cindy Shiner that her goal was to help readers get past the statistics and to put a human face on those 28 million people.
What did you hope to achieve by writing 28?
It's easier to care about this issue when you start to see those affected as individual people and to understand that it is every bit as disturbing to hear the news that you have HIV in a little counselor's office in Malawi as it is in New York or London or Toronto or Sydney.
I was writing for a northern, or developed world audience, trying to get them past the lack of engagement with this issue, which I think sometimes comes either from being paralyzed from the statistics or from thinking, "Well, sure Aids in Africa is bad but it's just one more bad thing in a place full of bad things so it's really not any different." [I wanted] to say actually that all of those [living with HIV] are people with families, people who had dreams and ambitions, people who would be as terrified by this news as you would be.
Have you succeeded in doing this? And if so, how do you measure it?
I have no idea, I think because it's almost impossible to measure. The ultimate goal was a broad change in Western public opinion and I don't know how one would assess that.
The response to the book has been quite gratifying. It's been published in 13 or 14 countries in a number of different languages and I've received lots and lots of mail from readers and really good attendance in places where I've spoken about it, either by myself or with people who were featured in it. So that's heartening because your gut feel when you set out to write a book about HIV in Africa is that no one will read it.
When I started writing the book, and certainly when I started reporting on this issue in Africa full time, there was a complete lack of interested engagement in the North. Over the time… I was covering this issue I saw a lot of things change. By the time I was finished, the GAP had a clothing line for the issue (HIV/Aids). So obviously it was on the radar in the West in a way that it just didn't used to be at all.
I don't really know how I would separate out the impact of 28 from things like the involvement of Bono or the efforts of Bill and Melinda Gates. I think a lot of things happened at once and 28 was a part of that.
Once you began reporting on the pandemic in Africa, did you come to realize that you had misperceptions about HIV/Aids and if so how were they turned around?
I wouldn't say that I had misperceptions that changed particularly. I think maybe I [developed] a deeper understanding of how these issues are incredibly complicated.
To give you an example, I was writing about migrant labor and the role that that's played in transmission of the virus. I was talking to some epidemiologists who had been tracking communities of miners who come from either rural South Africa or the surrounding countries to work in the mines around Johannesburg. The miners are here for a couple of years and then they go back home. And I was writing about how that quite often those men will have sexual partners in the cities where they live – which is not difficult to understand if they're away from home for a couple of years – and then they take the virus back home with them and infect their wives. That's the standard route of transmission that's discussed.
But in talking with these epidemiologists, they said, "Well, actually, when we survey miners we find that half of them are in couples where one partner is infected and the other isn't and half the time it was the women who were infected and not the men." What that says, of course, is that when these men went away, their female partners, their wives, were also choosing to have other partners, again perfectly understandable, [for] people looking for companionship, intimacy, sex, possibly financial support, while their partner was gone for years at a time.
The discussion around how the virus is transmitted is always about men and quite often there's a very loaded discussion of African men and their sexuality – which to some degree has its origins in behavior that has been extremely damaging… Nobody was talking about the fact that there were a lot of women choosing to have partners when their husbands were away and what that meant for the transmission of the virus. And, of course, until you're honest about that and really looking at all the ways the virus is moving you're not going to be able to come up with good strategies to respond.
That's a very long way of saying that I learned that there's a standard way that the African pandemic is discussed and below that is a very, very deep layer of nuance that much more often is glossed over.
What did you think was missing in the literature that prompted you to focus on the pandemic?
You never heard the human stories. If you got any news outside Africa about the Aids pandemic, it was this flat, one-dimensional picture of poor suffering Africans. You never heard about the fact that virtually everything that had been done to respond to the pandemic had been done by Africans, usually by Africans living with HIV. And you didn't hear the stories of incredible courage or resilience that I was hearing all the time.
You didn't see these people as people and you certainly didn't hear about all the ways they were taking on governments and pharmaceutical companies and even their own communities, their churches, their families to respond to this.
What was the reaction of your editors when you told them that you wanted to focus on HIV/Aids in Africa?
Initially it was extremely dubious. They were not enthusiastic at all. They couldn't believe that this would be anything but a continuation of that one-dimensional, extremely grim story.
We recently spoke with Stephen Lewis [formerly special envoy for HIV/Aids in Africa for United Nations Secretary-General Kofi Annan] and one thing he feels strongly about is the U.S. administration's Aids plan, Pepfar. He contends that Pepfar does not go nearly far enough to address HIV/Aids and that people should demand more rather than cheering what the administration is currently doing. What is your perception of Pepfar?
Well, I think about Pepfar like any other Western donor government response to the pandemic: I would say they don't do enough. But to my great surprise I have been extremely impressed with Pepfar.
Everywhere I go in Africa it is the most effective, most efficient response to the pandemic that I've seen. They spend money quickly and intelligently and they have a huge impact. If you look at the numbers they have on treatment, the number of mother-to-child transmissions they've prevented, the number of tests they've provided, it's been incredibly successful. Obviously it had some extremely large problems at the beginning that were the result of catering to American political constituencies [rather than] out of any real concern for the people of Africa… But most of those have been dealt with.
Sure, it would obviously be great if Pepfar were bigger and had more money and worked in more places and that's probably Stephen's point. But I think that frankly the Bush administration deserves a lot more credit for this than they've received. I would say that it's their great American foreign policy triumph and virtually nobody in America seems to know about it.
Are you planning a follow-up to 28 and to what extent to you keep in touch with the people profiled in the book?
I'm not planning a follow-up. For every subsequent edition I update the epilogue with the latest news of the people who are in it. I am in pretty close touch with all of them… It's really nice to see the way the book has had a really positive impact on a lot of their lives.
Is there anything else that you would like to say?
I have seen so many individual acts of great courage and heroism in so many different countries. People who are… fighting these fights are working with no resources, often when they are ill in isolated areas, up against huge forces and nobody writes this down.
There's been almost no recorded history of 25 years of response to the pandemic in Africa and almost all of these individual acts of heroism have been lost. There are a couple of people like Zackie Achmat, whose stories are quite well known internationally, and he's a huge inspiration for other Africans.
When the International Aids Conference was held in Toronto in 2006 I was almost finished writing the book and 13 people profiled were at that conference representing their organizations. My publisher hosted a dinner, and sitting listening to them talk to each other, listening to the Nigerian talk to the Zambian about what they were doing about prevention of mother-to-child transmission, and the South African talk to the Ethiopian about what was happening in the armed forces for HIV prevention, was possibly one of the most wonderful moments of the whole process for me.
I thought, this is not an opportunity that these individual Africans get. They don't realize that what they're doing is actually being repeated all over the continent, that other people have exactly the same challenges.
It's important that just a little bit of this get written down because by the very nature of HIV you lose so many of the people who've been important in these struggles... I did not have that as a goal when I started but certainly when I finished I thought that I hope the book does a small, small part of that.
Source: http://allafrica.com/stories/200805190274.html?page=2
The widely acclaimed book, 28: Stories of Aids in Africa, has been highly praised for humanizing the story of HIV and Aids in Africa for readers around the world. The book tells the stories of 28 people affected by the virus – one for every million of those believed to be living with HIV in sub-Saharan Africa. Stephanie Nolen, author of the book and Africa bureau chief for the Toronto Globe and Mail, told AllAfrica's Cindy Shiner that her goal was to help readers get past the statistics and to put a human face on those 28 million people.
What did you hope to achieve by writing 28?
It's easier to care about this issue when you start to see those affected as individual people and to understand that it is every bit as disturbing to hear the news that you have HIV in a little counselor's office in Malawi as it is in New York or London or Toronto or Sydney.
I was writing for a northern, or developed world audience, trying to get them past the lack of engagement with this issue, which I think sometimes comes either from being paralyzed from the statistics or from thinking, "Well, sure Aids in Africa is bad but it's just one more bad thing in a place full of bad things so it's really not any different." [I wanted] to say actually that all of those [living with HIV] are people with families, people who had dreams and ambitions, people who would be as terrified by this news as you would be.
Have you succeeded in doing this? And if so, how do you measure it?
I have no idea, I think because it's almost impossible to measure. The ultimate goal was a broad change in Western public opinion and I don't know how one would assess that.
The response to the book has been quite gratifying. It's been published in 13 or 14 countries in a number of different languages and I've received lots and lots of mail from readers and really good attendance in places where I've spoken about it, either by myself or with people who were featured in it. So that's heartening because your gut feel when you set out to write a book about HIV in Africa is that no one will read it.
When I started writing the book, and certainly when I started reporting on this issue in Africa full time, there was a complete lack of interested engagement in the North. Over the time… I was covering this issue I saw a lot of things change. By the time I was finished, the GAP had a clothing line for the issue (HIV/Aids). So obviously it was on the radar in the West in a way that it just didn't used to be at all.
I don't really know how I would separate out the impact of 28 from things like the involvement of Bono or the efforts of Bill and Melinda Gates. I think a lot of things happened at once and 28 was a part of that.
Once you began reporting on the pandemic in Africa, did you come to realize that you had misperceptions about HIV/Aids and if so how were they turned around?
I wouldn't say that I had misperceptions that changed particularly. I think maybe I [developed] a deeper understanding of how these issues are incredibly complicated.
To give you an example, I was writing about migrant labor and the role that that's played in transmission of the virus. I was talking to some epidemiologists who had been tracking communities of miners who come from either rural South Africa or the surrounding countries to work in the mines around Johannesburg. The miners are here for a couple of years and then they go back home. And I was writing about how that quite often those men will have sexual partners in the cities where they live – which is not difficult to understand if they're away from home for a couple of years – and then they take the virus back home with them and infect their wives. That's the standard route of transmission that's discussed.
But in talking with these epidemiologists, they said, "Well, actually, when we survey miners we find that half of them are in couples where one partner is infected and the other isn't and half the time it was the women who were infected and not the men." What that says, of course, is that when these men went away, their female partners, their wives, were also choosing to have other partners, again perfectly understandable, [for] people looking for companionship, intimacy, sex, possibly financial support, while their partner was gone for years at a time.
The discussion around how the virus is transmitted is always about men and quite often there's a very loaded discussion of African men and their sexuality – which to some degree has its origins in behavior that has been extremely damaging… Nobody was talking about the fact that there were a lot of women choosing to have partners when their husbands were away and what that meant for the transmission of the virus. And, of course, until you're honest about that and really looking at all the ways the virus is moving you're not going to be able to come up with good strategies to respond.
That's a very long way of saying that I learned that there's a standard way that the African pandemic is discussed and below that is a very, very deep layer of nuance that much more often is glossed over.
What did you think was missing in the literature that prompted you to focus on the pandemic?
You never heard the human stories. If you got any news outside Africa about the Aids pandemic, it was this flat, one-dimensional picture of poor suffering Africans. You never heard about the fact that virtually everything that had been done to respond to the pandemic had been done by Africans, usually by Africans living with HIV. And you didn't hear the stories of incredible courage or resilience that I was hearing all the time.
You didn't see these people as people and you certainly didn't hear about all the ways they were taking on governments and pharmaceutical companies and even their own communities, their churches, their families to respond to this.
What was the reaction of your editors when you told them that you wanted to focus on HIV/Aids in Africa?
Initially it was extremely dubious. They were not enthusiastic at all. They couldn't believe that this would be anything but a continuation of that one-dimensional, extremely grim story.
We recently spoke with Stephen Lewis [formerly special envoy for HIV/Aids in Africa for United Nations Secretary-General Kofi Annan] and one thing he feels strongly about is the U.S. administration's Aids plan, Pepfar. He contends that Pepfar does not go nearly far enough to address HIV/Aids and that people should demand more rather than cheering what the administration is currently doing. What is your perception of Pepfar?
Well, I think about Pepfar like any other Western donor government response to the pandemic: I would say they don't do enough. But to my great surprise I have been extremely impressed with Pepfar.
Everywhere I go in Africa it is the most effective, most efficient response to the pandemic that I've seen. They spend money quickly and intelligently and they have a huge impact. If you look at the numbers they have on treatment, the number of mother-to-child transmissions they've prevented, the number of tests they've provided, it's been incredibly successful. Obviously it had some extremely large problems at the beginning that were the result of catering to American political constituencies [rather than] out of any real concern for the people of Africa… But most of those have been dealt with.
Sure, it would obviously be great if Pepfar were bigger and had more money and worked in more places and that's probably Stephen's point. But I think that frankly the Bush administration deserves a lot more credit for this than they've received. I would say that it's their great American foreign policy triumph and virtually nobody in America seems to know about it.
Are you planning a follow-up to 28 and to what extent to you keep in touch with the people profiled in the book?
I'm not planning a follow-up. For every subsequent edition I update the epilogue with the latest news of the people who are in it. I am in pretty close touch with all of them… It's really nice to see the way the book has had a really positive impact on a lot of their lives.
Is there anything else that you would like to say?
I have seen so many individual acts of great courage and heroism in so many different countries. People who are… fighting these fights are working with no resources, often when they are ill in isolated areas, up against huge forces and nobody writes this down.
There's been almost no recorded history of 25 years of response to the pandemic in Africa and almost all of these individual acts of heroism have been lost. There are a couple of people like Zackie Achmat, whose stories are quite well known internationally, and he's a huge inspiration for other Africans.
When the International Aids Conference was held in Toronto in 2006 I was almost finished writing the book and 13 people profiled were at that conference representing their organizations. My publisher hosted a dinner, and sitting listening to them talk to each other, listening to the Nigerian talk to the Zambian about what they were doing about prevention of mother-to-child transmission, and the South African talk to the Ethiopian about what was happening in the armed forces for HIV prevention, was possibly one of the most wonderful moments of the whole process for me.
I thought, this is not an opportunity that these individual Africans get. They don't realize that what they're doing is actually being repeated all over the continent, that other people have exactly the same challenges.
It's important that just a little bit of this get written down because by the very nature of HIV you lose so many of the people who've been important in these struggles... I did not have that as a goal when I started but certainly when I finished I thought that I hope the book does a small, small part of that.
Source: http://allafrica.com/stories/200805190274.html?page=2
posted by AIDS-Care-Watch at 9:36 am
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