Numbers
Presented at the NAPWA Conference, Melbourne University
Last week I visited my doctor to get the first set of numbers that I have had done this year. I have been off treatments since December, when my lactic acid reached dangerous levels. This has been a strange period for me, and I have oscillated between feeling incredibly liberated and deliciously naughty. I expected the worst from this doctors appointment, and got it. After having an undetectable viral load for more than three years, my viral load last week was over 100,000 – the highest it has ever been to my knowledge.
I resist this information and try to imagine each of these viral particles. I think about the fact that if there are more than 100,000 of them in every millilitre of blood, and I have more than 7 litres of blood in my body, then that means there are more than 700,000,000 of them inside me. Hell, there could be a billion of them. How much do they weigh, I idly wonder? Could this explain my recent weight gain? I try to do the calculation: I have gained five kilos since December, that’s 5000 grams or 5,000,000 milligrams and there are about 700,000,000 new viral particles. That means each of them weighs .007 of a milligram. I can’t imagine a thousandth of a milligram, so I shift to a new tack. Where did all those protein chains come from? How much of my food intake is being wasted on creating these viral particles? I make a mental note to reduce my daily intake of kilojoules and give them less to work with. I look at myself closely in a mirror, watching my skin anxiously. Surely that many viral particles would make my blood bulge in some way: I should be able to see it, shouldn’t I? There are no visible bulges so far, but other signs of the virus at work. The paisley pattern of leukoplakia on my tongue, the spots of psoriasis, the rotting fingernail on my left hand.
Last week my other number, my CD4 count, was up as well, confusing both me and my doctor. It was also the highest it has ever been, but it seems to me that the extra 200 T-cells per millilitre, a mere 1,400,000 of them will have their work cut out dealing with all that new virus. Perhaps I shouldn’t stop eating after all: they’ll need some energy to do their work. With a sigh, I reach for another chocolate biscuit.
My social world, my culture as a positive person, is dominated by numbers. The number of pills I haven’t been taking per day, the number of viral particles, the number of T-cells, the number of kilos I have lost or gained since my last doctors visit, the number of what is euphemistically referred to as loose bowel movements, the number of times I have worried about infecting my partner in the last twelve months, the number of people to whom I have disclosed my serostatus, the number of dollars I earn a week that keeps me above the poverty line, the number of sick days I’ve had so far this year, the number of minutes I could survive on my savings if I had to give up working, the number of meetings I’ve been to so far this month, the number of times in the last year that I have read a newspaper article that convinced me that AIDS phobia is in better health than most of my friends, the number of sins since my last confession. A lot of numbers, but there is strength in numbers. If I added them together, I would have the sum of my life as a positive man. If we all shouted out all our numbers now, we could add all of our experience together, and know something about the social and cultural environment in which we live.
Fortunately, we don’t have to do that, because Jeffery Grierson and his team at ARCSHS did it already for 924 of us in the Futures 2 report, released last year. The report showed that three quarters of us are in pretty good health, although one fifth of us have had an AIDS defining illness, and one third of us have had HIV related illnesses. Many of us have health problems related to HIV: about a third of us have experienced lipodystrophy, weight loss, or confusion and memory loss. Almost half of us have a sleep disorder. If all that wasn’t enough, two out of five of us have at least one other major health condition other than HIV/AIDS.
In relation to treatments, the report shows that three quarters of us are on antiretroviral therapy now, and most of us have used it at some time. Those who are on treatments have to take them two to three times a day, and mostly we don’t miss these doses. Nevertheless, three quarters of us who are on treatments have difficulties taking them, including remembering to take them on time, organising meals around them, taking pills in public, transporting medication, or taking large numbers of tablets. Sixty per cent of us have not taken a break from therapy since we started it, but those who have, did so because of the severity of the side effects, to clean out our systems, to take a holiday from drugs, or because we developed resistence, had difficulties with compliance, or the drugs simply didn’t do the job. Most of us have concerns about resistance, and about how many viable combinations we have left. Those of us with the highest viral loads, the lowest CD4s, or the poorest health are worried the most about our treatment options. Although about three quarters of us think that ARV means better prospects for us, most of us are concerned that our medications are going to stop working for us.
In relation to our health care, Futures tells us that about half of us see a GP who specialises in HIV for our general health care, and that seventy per cent of us go to either a GP who specialises in HIV or an HIV specialist/ physician for HIV specific treatment. About a third of us have received less favourable treatment at a medical service because we are positive. Just over half of us are able to get all our medication from one place, and the rest have to trawl to two or even three different places to get everything we need. Many of us also seek help from AIDS organisations, including treatment advice, social contact, peer support, counselling, advice on financial matters, advice on legal matters, and alternative therapies. We also go to mainstream organisations for pharmacy services, housing assistance, mental health services and employment services. Although much of our treatment advice comes from our doctors, we get most of our information about living with HIV from the HIV/AIDS media.
The report suggests that support is an issue for all of us, and that about half of us have no one that gives us a lot of support. Three quarters of us get some support from our partners or spouses, two thirds of us get support from our pets, and about half get support from close friends. Most of us also have contact with an HIV/AIDS organisation, and many of us have friends and acquantainces who are also positive. Three quarters of us have lost someone close to AIDS.
The report tells us that an increasing number of us are leading anxious and depressed lives – a third of us are on medication for anxiety, and a quarter for depression. Our horizons are close: few of us plan more than ten years ahead, although half of us plan for at least a year ahead. As our health declines, so does our vision for the future – a quarter of us now plan for a shorter time frame than we did two years ago. We smoke twice as much as the general population, and use more recreational drugs, although two thirds or us have never injected.
Our relationships are also fraught. A quarter of us are not having sex at present, and only half of us are in a regular relationship. Fewer than half of our partners are also positive, and although our negative partners are supportive, some of them are also worried or frightened by our condition. Those of us who see people casually, worry about infecting other people, and many of us fear rejection from potential partners if we disclose our HIV status to them. Very few of us are confident that our treatments reduce our infectivity to the point where safe sex is no longer important.
As well as anxious and depressed, we are poor. Fewer than half of us are in paid employment, and only one quarter of those working are full time. Many of us are not working or retired, and most have had to leave careers, or reduce our career goals. Lately, some of us have been returning to work for financial reasons. About two thirds of those of us who work are concerned about disclosing our serostatus in the workplace, but have problems with maintaining confidentiality because of gossip, unexplained absences, or storing and taking medications at work. More than half of us have difficulty meeting the cost of daily living, including difficulties paying for food, housing, transport and medical services. More than one third of us surviving on pensions are living below the poverty line. Those of us who are women are significantly more likely to be living below the poverty line. Few of us own our own homes.
Futures tells us that when our numbers are added together, the resulting sum of us shows the increasing complexity of managing our disease and our social lives. But in adding us together, even Futures somehow reduces us, although I am sure without the authors wishing it so. We are sometimes culturally positioned in this report, as in much recent social research, as “patients” or as “welfare clients”. The rash of new infections in Victoria positions us as public health threats, and the sections of Futures that deal with safe sex and drug use remind us that the research interest in us is often driven by larger political agendas that diminish us as individuals and as an alliance of communities. I have grown inceasingly cranky over the last few days as I re-read Marsha Rosengarten’s report on gay men’s understandings of clinical markers in sexual practice. Even the title, “touchwood, everything will be OK”, irritates me because it suggests a lack of care, a lack of responsibility, a reliance on superstition in our efforts to control the spread of our disease. One of her negative informants suggests that positive gay men are typecast as promiscuous junkies, and I think there is little around that contradicts this view. And when they say something about some of us, they currently say it about us all.
Addition is of course not the only thing we can do with numbers. As I look around this room, I see a number of divisions we can make. Most of us are positive, but some of us here are also negative. Those of us who are positive can be divided into male, female and transgendered. We can also be divided into bi, straight and gay. We can be divided into those on treatments and those who are not, between those who are compliant and those who are not, between those who are well and those who are not. We can be divided into Indigenous and non-Indigenous Australians, between those who live in the country and those who live in the city, and between those who speak English as a first language and those who don’t. Our communities, it seems, are even more complex than our treatment choices. And yet our experience often is presented as one dimensional, as wholly sexaulised or medicalised, and we are sidelined, patronised - foreclosed –as the casualties of the war against AIDS. John Rule suggested to me when I was preparing this paper that I should talk about other identity positions that we could take up, identities that do more than simply resist these stereotypes. He talked of the importance of undertaking projects which celebrate our diversity, which strengthen and promote our diverse identities as men and women, as Indigenous people, as heterosexual and gay, as younger or older. In his view, the important questions we should be asking ourselves are: where do we want to be positioned in public debates? Who is forming our public identity now, and for what purposes? What can we do to take some control of these processes of public identification?
Presented at the NAPWA Conference, Melbourne University
Last week I visited my doctor to get the first set of numbers that I have had done this year. I have been off treatments since December, when my lactic acid reached dangerous levels. This has been a strange period for me, and I have oscillated between feeling incredibly liberated and deliciously naughty. I expected the worst from this doctors appointment, and got it. After having an undetectable viral load for more than three years, my viral load last week was over 100,000 – the highest it has ever been to my knowledge.
I resist this information and try to imagine each of these viral particles. I think about the fact that if there are more than 100,000 of them in every millilitre of blood, and I have more than 7 litres of blood in my body, then that means there are more than 700,000,000 of them inside me. Hell, there could be a billion of them. How much do they weigh, I idly wonder? Could this explain my recent weight gain? I try to do the calculation: I have gained five kilos since December, that’s 5000 grams or 5,000,000 milligrams and there are about 700,000,000 new viral particles. That means each of them weighs .007 of a milligram. I can’t imagine a thousandth of a milligram, so I shift to a new tack. Where did all those protein chains come from? How much of my food intake is being wasted on creating these viral particles? I make a mental note to reduce my daily intake of kilojoules and give them less to work with. I look at myself closely in a mirror, watching my skin anxiously. Surely that many viral particles would make my blood bulge in some way: I should be able to see it, shouldn’t I? There are no visible bulges so far, but other signs of the virus at work. The paisley pattern of leukoplakia on my tongue, the spots of psoriasis, the rotting fingernail on my left hand.
Last week my other number, my CD4 count, was up as well, confusing both me and my doctor. It was also the highest it has ever been, but it seems to me that the extra 200 T-cells per millilitre, a mere 1,400,000 of them will have their work cut out dealing with all that new virus. Perhaps I shouldn’t stop eating after all: they’ll need some energy to do their work. With a sigh, I reach for another chocolate biscuit.
My social world, my culture as a positive person, is dominated by numbers. The number of pills I haven’t been taking per day, the number of viral particles, the number of T-cells, the number of kilos I have lost or gained since my last doctors visit, the number of what is euphemistically referred to as loose bowel movements, the number of times I have worried about infecting my partner in the last twelve months, the number of people to whom I have disclosed my serostatus, the number of dollars I earn a week that keeps me above the poverty line, the number of sick days I’ve had so far this year, the number of minutes I could survive on my savings if I had to give up working, the number of meetings I’ve been to so far this month, the number of times in the last year that I have read a newspaper article that convinced me that AIDS phobia is in better health than most of my friends, the number of sins since my last confession. A lot of numbers, but there is strength in numbers. If I added them together, I would have the sum of my life as a positive man. If we all shouted out all our numbers now, we could add all of our experience together, and know something about the social and cultural environment in which we live.
Fortunately, we don’t have to do that, because Jeffery Grierson and his team at ARCSHS did it already for 924 of us in the Futures 2 report, released last year. The report showed that three quarters of us are in pretty good health, although one fifth of us have had an AIDS defining illness, and one third of us have had HIV related illnesses. Many of us have health problems related to HIV: about a third of us have experienced lipodystrophy, weight loss, or confusion and memory loss. Almost half of us have a sleep disorder. If all that wasn’t enough, two out of five of us have at least one other major health condition other than HIV/AIDS.
In relation to treatments, the report shows that three quarters of us are on antiretroviral therapy now, and most of us have used it at some time. Those who are on treatments have to take them two to three times a day, and mostly we don’t miss these doses. Nevertheless, three quarters of us who are on treatments have difficulties taking them, including remembering to take them on time, organising meals around them, taking pills in public, transporting medication, or taking large numbers of tablets. Sixty per cent of us have not taken a break from therapy since we started it, but those who have, did so because of the severity of the side effects, to clean out our systems, to take a holiday from drugs, or because we developed resistence, had difficulties with compliance, or the drugs simply didn’t do the job. Most of us have concerns about resistance, and about how many viable combinations we have left. Those of us with the highest viral loads, the lowest CD4s, or the poorest health are worried the most about our treatment options. Although about three quarters of us think that ARV means better prospects for us, most of us are concerned that our medications are going to stop working for us.
In relation to our health care, Futures tells us that about half of us see a GP who specialises in HIV for our general health care, and that seventy per cent of us go to either a GP who specialises in HIV or an HIV specialist/ physician for HIV specific treatment. About a third of us have received less favourable treatment at a medical service because we are positive. Just over half of us are able to get all our medication from one place, and the rest have to trawl to two or even three different places to get everything we need. Many of us also seek help from AIDS organisations, including treatment advice, social contact, peer support, counselling, advice on financial matters, advice on legal matters, and alternative therapies. We also go to mainstream organisations for pharmacy services, housing assistance, mental health services and employment services. Although much of our treatment advice comes from our doctors, we get most of our information about living with HIV from the HIV/AIDS media.
The report suggests that support is an issue for all of us, and that about half of us have no one that gives us a lot of support. Three quarters of us get some support from our partners or spouses, two thirds of us get support from our pets, and about half get support from close friends. Most of us also have contact with an HIV/AIDS organisation, and many of us have friends and acquantainces who are also positive. Three quarters of us have lost someone close to AIDS.
The report tells us that an increasing number of us are leading anxious and depressed lives – a third of us are on medication for anxiety, and a quarter for depression. Our horizons are close: few of us plan more than ten years ahead, although half of us plan for at least a year ahead. As our health declines, so does our vision for the future – a quarter of us now plan for a shorter time frame than we did two years ago. We smoke twice as much as the general population, and use more recreational drugs, although two thirds or us have never injected.
Our relationships are also fraught. A quarter of us are not having sex at present, and only half of us are in a regular relationship. Fewer than half of our partners are also positive, and although our negative partners are supportive, some of them are also worried or frightened by our condition. Those of us who see people casually, worry about infecting other people, and many of us fear rejection from potential partners if we disclose our HIV status to them. Very few of us are confident that our treatments reduce our infectivity to the point where safe sex is no longer important.
As well as anxious and depressed, we are poor. Fewer than half of us are in paid employment, and only one quarter of those working are full time. Many of us are not working or retired, and most have had to leave careers, or reduce our career goals. Lately, some of us have been returning to work for financial reasons. About two thirds of those of us who work are concerned about disclosing our serostatus in the workplace, but have problems with maintaining confidentiality because of gossip, unexplained absences, or storing and taking medications at work. More than half of us have difficulty meeting the cost of daily living, including difficulties paying for food, housing, transport and medical services. More than one third of us surviving on pensions are living below the poverty line. Those of us who are women are significantly more likely to be living below the poverty line. Few of us own our own homes.
Futures tells us that when our numbers are added together, the resulting sum of us shows the increasing complexity of managing our disease and our social lives. But in adding us together, even Futures somehow reduces us, although I am sure without the authors wishing it so. We are sometimes culturally positioned in this report, as in much recent social research, as “patients” or as “welfare clients”. The rash of new infections in Victoria positions us as public health threats, and the sections of Futures that deal with safe sex and drug use remind us that the research interest in us is often driven by larger political agendas that diminish us as individuals and as an alliance of communities. I have grown inceasingly cranky over the last few days as I re-read Marsha Rosengarten’s report on gay men’s understandings of clinical markers in sexual practice. Even the title, “touchwood, everything will be OK”, irritates me because it suggests a lack of care, a lack of responsibility, a reliance on superstition in our efforts to control the spread of our disease. One of her negative informants suggests that positive gay men are typecast as promiscuous junkies, and I think there is little around that contradicts this view. And when they say something about some of us, they currently say it about us all.
Addition is of course not the only thing we can do with numbers. As I look around this room, I see a number of divisions we can make. Most of us are positive, but some of us here are also negative. Those of us who are positive can be divided into male, female and transgendered. We can also be divided into bi, straight and gay. We can be divided into those on treatments and those who are not, between those who are compliant and those who are not, between those who are well and those who are not. We can be divided into Indigenous and non-Indigenous Australians, between those who live in the country and those who live in the city, and between those who speak English as a first language and those who don’t. Our communities, it seems, are even more complex than our treatment choices. And yet our experience often is presented as one dimensional, as wholly sexaulised or medicalised, and we are sidelined, patronised - foreclosed –as the casualties of the war against AIDS. John Rule suggested to me when I was preparing this paper that I should talk about other identity positions that we could take up, identities that do more than simply resist these stereotypes. He talked of the importance of undertaking projects which celebrate our diversity, which strengthen and promote our diverse identities as men and women, as Indigenous people, as heterosexual and gay, as younger or older. In his view, the important questions we should be asking ourselves are: where do we want to be positioned in public debates? Who is forming our public identity now, and for what purposes? What can we do to take some control of these processes of public identification?
I had trouble finding my own voice to speak this paper. As a medical anthropologist, most of my work has been with Indigenous Australians in Central Australia, Central Queensland, and the Torres Strait. I come to this research as a consumer rather than a producer. As consumers, I think we have a lot to learn from Indigenous Australians and their attitude to research. I recently talked to Johnny Liddle, who until this year ran the Aboriginal Health Service, Congress, in Alice Springs, about research into sexual health. He said that he hated the way research was reported, and gave the example that one in five Aboriginal men have an STD. He had never had an STD himself, and resented the fact that people looked at him and wondered if he was the one. I think many of us can identify with this. Futures showed that more than 80% of us almost always used a condom for unprotected anal intercourse. The current fascination with the practice of unprotected anal intercourse pisses me off – I wonder, like Johnny, if my negative friends and colleagues ever look at me, and wonder about my sexual practice. I wonder where the safe sex behaviours, the meanings of our safe activity are being investigated, reported, celebrated.
As a researcher myself, I know that the power of research lies in the questions that are asked in the first place. In preparing this paper, I asked myself what social research had told us lately about this diversity of identities and experiences. I thought of Karalyn McDonald’s work on positive women, of Michael Hurley’s work on the HIV/AIDS treatments media, of Kane Race’s work on a range of projects over the last several years, of David McInnes’ work on the communication between patients and doctors, Mark Saunders’ work with positive Indigenous men, the research that led to the “Don’t Just Take It” report launched last evening, the work that AFAO is doing on a treatments guide for positive Indigenous people, and of course the rich data that Jeffrey Grierson has presented in Futures. I believe that the most valuable work being done today is the work that is being driven by our various positive agendas, work that is raising and answering questions about the diversity of our experience. The value of it lies in ensuring that we have positions to speak from, so that our voices – individual and corporate – continue to be heard. We are certainly more than the sum of our numbers, more than a set of clinical markers, a conflation of risk practices, or a set of diseases statistics. We should be actively pursuing a research agenda that challenges notions that we can be reduced to percentages, tables and figures.
As a researcher myself, I know that the power of research lies in the questions that are asked in the first place. In preparing this paper, I asked myself what social research had told us lately about this diversity of identities and experiences. I thought of Karalyn McDonald’s work on positive women, of Michael Hurley’s work on the HIV/AIDS treatments media, of Kane Race’s work on a range of projects over the last several years, of David McInnes’ work on the communication between patients and doctors, Mark Saunders’ work with positive Indigenous men, the research that led to the “Don’t Just Take It” report launched last evening, the work that AFAO is doing on a treatments guide for positive Indigenous people, and of course the rich data that Jeffrey Grierson has presented in Futures. I believe that the most valuable work being done today is the work that is being driven by our various positive agendas, work that is raising and answering questions about the diversity of our experience. The value of it lies in ensuring that we have positions to speak from, so that our voices – individual and corporate – continue to be heard. We are certainly more than the sum of our numbers, more than a set of clinical markers, a conflation of risk practices, or a set of diseases statistics. We should be actively pursuing a research agenda that challenges notions that we can be reduced to percentages, tables and figures.
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