Accentuate the positive
By, Society Guardian, May 15, 2007
After Kate was diagnosed with HIV twenty years ago, she writes on how she avoided despair to become an activist for the rights of women with the virus across the world
Twenty years ago I experienced what was probably the most significant event to shape my adult life: at around 11am one Tuesday morning in a clinic in north London I was told I'd tested positive for HIV.
What followed that moment was a time of fear and uncertainty about the future. The only certainty I'd been given by my doctor was that I would die, quite unpleasantly and quite soon. In the spring of 1987 I stopped imagining future relationships, long-term plans or career opportunities. Initially it was hard to think past the next few hours. Slowly hours became days, then days became months and, by the time 1987 drew to a close, I could imagine maybe the next year or two of my life at most. I was living in an unheated bedsit, sharing a bathroom with three alcoholic old men and I was scared of dying. But the council told me it would be several years till I could be re-housed, so that bedsit was where I imagined I would die.
It's 2007 and here I am in Geneva working in an interesting and rewarding job as senior adviser to the United Nations Joint Programme on HIV/Aids (UNAIDS). As of last month, I have a mortgage on a flat in London that would have probably cost me one tenth of the price if I'd bought it back when I was diagnosed. And last September I married my partner of 14 years, in the company of family and friends, many of who have also survived 20 or so years of their own diagnosis and been a source of support, entertainment and gossip throughout. Along the way I have picked up various educational qualifications, including a masters degree and a diploma in jewellery making and silversmithing, and more lines on my face than I'd like to see when I look in the mirror.
So what happened? I think the fact that I survived when most of my HIV-positive friends and colleagues from 20 years back did not make it is mainly down to chance and good luck. Chance and good luck to have become the third member of Positively Women shortly after my diagnosis. My involvement and activism helped me channel my energies in a way that enabled me to wrestle back some control over the virus, and we were able to obtain funding for the group and see it grow rapidly into the large and effective peer-led organisation that it is today.
When we formed the International Community of Women living with HIV, a network of women living with the virus across the world, people believed in our vision and agreed to fund us and listen to us. Again, it was chance and good luck that I didn't die during the time when I first stubbornly refused to embark on anti-retroviral therapy (ART). And it was good luck that the scientific evidence to support highly active anti-retroviral therapy (HAART) emerged when it did, persuading me to finally start taking the medication that has kept me alive.
There are only a few of the old HIV-positive crowd I knew from 20 years ago around now. Some are working in UN agencies and Aids-related NGOs. Others have gone back to the professions they were in before they were diagnosed. Some have retired or are still on benefits. Most are dead.
Some of us who have survived are succumbing to age-related diseases, such as cancer and heart problems. And some are still dying of Aids-related complications, such as my old friend Arnaud Marty-Lavauzelle, one of the first HIV-positive activists in France in the early days of the epidemic, who died in February in spite of being on ART.
A couple of months ago, I was in Iran, where I attended a meeting with colleagues from across the Middle East and north Africa. I was struck by the similarities between the experience of HIV-positive people in the region today and the circumstances we were facing twenty years ago in the UK. There is a dismal lack of services, information and support and in most countries in the region HIV-positive people are not organised into groups or networks and have very little involvement, if any, in Aids policy.
But there are some massive differences too - most importantly, ART is mainly available to the positive people I met, though treatment information and literacy are minimal. People living with HIV in the Middle East and north Africa also face massively different and more challenging cultural and religious constraints and environments than we ever did and encounter huge barriers over gender and human rights issues. Yet, there are brave people coming out and challenging the status quo across the region because they feel, like we once felt, that they have no choice.
Many of us in those early days were driven by the need to make things different and to fight for what we believed people living with HIV needed and deserved. Twenty years on, in the UK and where ART is widely available, fewer HIV-positive people seem to feel the need to become involved in the response. Yet we continue to see the same combination of fury, need, outrage and determination driving people living with HIV from other parts of the world to advocate for change. I believe we need to work alongside them and not be complacent - we may have our health today but who knows what awaits us around the corner?
I think, globally, these are dangerous times for people living with HIV. We need to claw back control of the agenda, especially with the increasing trend towards criminalisation of transmission and other conservative forces at play that seek to contain us and curtail the rights of marginalised groups.
Even though in many ways I've become a bureaucrat, I believe it's my responsibility to serve the HIV-positive community from within the system. The community is where my loyalty is and a large part of what I do is in collaboration with HIV-positive networks. I am also trying to bring Aids activism into the UN in a small way. Along with other colleagues we have created UN+, which is a UN system-wide HIV-positive staff group advocating for improved conditions for people living with HIV both inside the UN and beyond. We met regularly with the former UN secretary-general, Kofi Annan, during his term, and will meet for the first time with the newly appointed Ban Ki Moon early next week.
In some ways, looking back to early 1987, I wish I'd known then what I know now - that I would somehow survive the devastation and the loss of so many friends and, along with other survivors, be contemplating pension plans and mortgages and other daily things that most people take for granted. But I guess if I'd known it all then I might not have fought the battles I fought, taken the risks I took, done the things I did and ended up in the life I have now. I love that life and there's not a day that goes by when I don't reflect on how privileged I am to have it and on the good luck that's allowed me to hold onto it. So maybe it's a good thing after all that I couldn't see what the future held...
ยท Positively Women works to improve the quality of life of women and families affected by HIV. The organisation was formed in 1987 by two HIV-positive women, who identified the need for services specifically for women. A 20th anniversary edition of its magazine features the stories of 24 women diagnosed over the last 20 years. The different stories show the changing attitudes and treatment of women living with HIV over the last two decades. For details of further events to commemorate PW's anniversary or for more information visit positivelywomen.org.uk.
After Kate was diagnosed with HIV twenty years ago, she writes on how she avoided despair to become an activist for the rights of women with the virus across the world
Twenty years ago I experienced what was probably the most significant event to shape my adult life: at around 11am one Tuesday morning in a clinic in north London I was told I'd tested positive for HIV.
What followed that moment was a time of fear and uncertainty about the future. The only certainty I'd been given by my doctor was that I would die, quite unpleasantly and quite soon. In the spring of 1987 I stopped imagining future relationships, long-term plans or career opportunities. Initially it was hard to think past the next few hours. Slowly hours became days, then days became months and, by the time 1987 drew to a close, I could imagine maybe the next year or two of my life at most. I was living in an unheated bedsit, sharing a bathroom with three alcoholic old men and I was scared of dying. But the council told me it would be several years till I could be re-housed, so that bedsit was where I imagined I would die.
It's 2007 and here I am in Geneva working in an interesting and rewarding job as senior adviser to the United Nations Joint Programme on HIV/Aids (UNAIDS). As of last month, I have a mortgage on a flat in London that would have probably cost me one tenth of the price if I'd bought it back when I was diagnosed. And last September I married my partner of 14 years, in the company of family and friends, many of who have also survived 20 or so years of their own diagnosis and been a source of support, entertainment and gossip throughout. Along the way I have picked up various educational qualifications, including a masters degree and a diploma in jewellery making and silversmithing, and more lines on my face than I'd like to see when I look in the mirror.
So what happened? I think the fact that I survived when most of my HIV-positive friends and colleagues from 20 years back did not make it is mainly down to chance and good luck. Chance and good luck to have become the third member of Positively Women shortly after my diagnosis. My involvement and activism helped me channel my energies in a way that enabled me to wrestle back some control over the virus, and we were able to obtain funding for the group and see it grow rapidly into the large and effective peer-led organisation that it is today.
When we formed the International Community of Women living with HIV, a network of women living with the virus across the world, people believed in our vision and agreed to fund us and listen to us. Again, it was chance and good luck that I didn't die during the time when I first stubbornly refused to embark on anti-retroviral therapy (ART). And it was good luck that the scientific evidence to support highly active anti-retroviral therapy (HAART) emerged when it did, persuading me to finally start taking the medication that has kept me alive.
There are only a few of the old HIV-positive crowd I knew from 20 years ago around now. Some are working in UN agencies and Aids-related NGOs. Others have gone back to the professions they were in before they were diagnosed. Some have retired or are still on benefits. Most are dead.
Some of us who have survived are succumbing to age-related diseases, such as cancer and heart problems. And some are still dying of Aids-related complications, such as my old friend Arnaud Marty-Lavauzelle, one of the first HIV-positive activists in France in the early days of the epidemic, who died in February in spite of being on ART.
A couple of months ago, I was in Iran, where I attended a meeting with colleagues from across the Middle East and north Africa. I was struck by the similarities between the experience of HIV-positive people in the region today and the circumstances we were facing twenty years ago in the UK. There is a dismal lack of services, information and support and in most countries in the region HIV-positive people are not organised into groups or networks and have very little involvement, if any, in Aids policy.
But there are some massive differences too - most importantly, ART is mainly available to the positive people I met, though treatment information and literacy are minimal. People living with HIV in the Middle East and north Africa also face massively different and more challenging cultural and religious constraints and environments than we ever did and encounter huge barriers over gender and human rights issues. Yet, there are brave people coming out and challenging the status quo across the region because they feel, like we once felt, that they have no choice.
Many of us in those early days were driven by the need to make things different and to fight for what we believed people living with HIV needed and deserved. Twenty years on, in the UK and where ART is widely available, fewer HIV-positive people seem to feel the need to become involved in the response. Yet we continue to see the same combination of fury, need, outrage and determination driving people living with HIV from other parts of the world to advocate for change. I believe we need to work alongside them and not be complacent - we may have our health today but who knows what awaits us around the corner?
I think, globally, these are dangerous times for people living with HIV. We need to claw back control of the agenda, especially with the increasing trend towards criminalisation of transmission and other conservative forces at play that seek to contain us and curtail the rights of marginalised groups.
Even though in many ways I've become a bureaucrat, I believe it's my responsibility to serve the HIV-positive community from within the system. The community is where my loyalty is and a large part of what I do is in collaboration with HIV-positive networks. I am also trying to bring Aids activism into the UN in a small way. Along with other colleagues we have created UN+, which is a UN system-wide HIV-positive staff group advocating for improved conditions for people living with HIV both inside the UN and beyond. We met regularly with the former UN secretary-general, Kofi Annan, during his term, and will meet for the first time with the newly appointed Ban Ki Moon early next week.
In some ways, looking back to early 1987, I wish I'd known then what I know now - that I would somehow survive the devastation and the loss of so many friends and, along with other survivors, be contemplating pension plans and mortgages and other daily things that most people take for granted. But I guess if I'd known it all then I might not have fought the battles I fought, taken the risks I took, done the things I did and ended up in the life I have now. I love that life and there's not a day that goes by when I don't reflect on how privileged I am to have it and on the good luck that's allowed me to hold onto it. So maybe it's a good thing after all that I couldn't see what the future held...
ยท Positively Women works to improve the quality of life of women and families affected by HIV. The organisation was formed in 1987 by two HIV-positive women, who identified the need for services specifically for women. A 20th anniversary edition of its magazine features the stories of 24 women diagnosed over the last 20 years. The different stories show the changing attitudes and treatment of women living with HIV over the last two decades. For details of further events to commemorate PW's anniversary or for more information visit positivelywomen.org.uk.
posted by AIDS-Care-Watch at 2:12 pm
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