Ethical dilemmas in professional practice in anthropology
Policy - environment - development
Worked example 1: HIV/AIDS in Lothian
Interview with a woman living with HIV
This page reproduces an interview between Dr Guro Huby and a woman living with HIV. Names of hospitals, care centres and staff have been changed to ensure anonymity.
Q Well, N., you are an HIV positive woman who has been involved in organising services and support systems for women and we appreciate your talking to us about your experience with the services and about your work Could you start by telling me, from when you were diagnosed, what services did you use, and what were your experiences with using those services?
A. Right, well, I was diagnosed in 1990, six years ago, when I was pregnant. I was diagnosed in X Hospital and obviously at that time there was not any major support for me. I was given my diagnosis and told I had about 13 years to live and was expected to have a termination at that time. Needless to say, I carried on with the pregnancy, didn't attend the X Hospital any more. I attended Y for pre natal care, and antenatal care. I had a support worker as well who knew of my diagnosis. I never really spoke about it to anybody when I was pregnant, obviously because the pregnancy was the priority in my mind. Once I had my little girl, I was absolutely appalled by the treatment I was given in Y, during labour and after labour. I wasn't aware that there was so much stigma, especially surrounding the medical staff, concerning the virus, ignorance actually.
Q. What happened then?
A. Well, in my antenatal care the other expectant mothers and I were shown the rooms where they were expecting to give birth. But when the time actually came I was put into an auditorium which had workmen next door, no facilities, no bed, no sink. I had to fight to give birth on the bed because I was actually on a stretcher. During labour the baby went into distress. I had done research, obviously the difference in procedures between positive women and undiagnosed women, and I was well aware if the baby went into distress they couldn't use electrodes to monitor the baby. They had to use the belt that goes round your stomach, because of fear of infection. Well, she, as the baby went into distress, the midwife must have been unaware of the difference in procedure and went ahead to put scalp electrodes on the baby's head to monitor her, and as she was going to do this, the doctor in charge started screaming 'don't do that, she's HIV positive', in a very horrible tone. I'll never, ever forget it. And I was lying there, in one of the most vulnerable position you could ever be in. I could not voice any anger, obviously, as the baby was already in distress. So I just held it within. I had a very straightforward birth, no stitches or anything. Straight after the baby was born they took her away. I had to actually ask what sex she was. I got a minute's glimpse of her. They took her away to see if she was cold and then they left me. They had also given me an epidural too late. They'd given it to me just before seven o'clock at night, obviously because no one had checked me and the baby was born at 18 minutes past, so the epidural hadn't even started to work. So, after the baby was born the epidural started to work so I was left. I couldn't even walk or anything. I had to be sick at that stage and I was on my own in this auditorium with nothing on. I had to actually crawl next door because there was this little partition in a big metal sink and I had to be sick in there and put the sick down the plughole - it was absolutely vile. They eventually got a wheelchair. The ambulance guys came back with a wheelchair and we went to see her. And four days I was in there. It had a very, very traumatic effect on me, holding my baby with gloves. They put me in an open ward with other mothers and whenever they held her they held her with rubber gloves. Obviously, new born babies bring up a small amount of sickness, and the fear, it was like: 'Oh this baby is going to be sick', almost dropping her, because she was bringing up a little bit of sickness. Treated me with hostility, like I was like something out of the gutter. I couldn't wait to get home. It had a very traumatic effect on me I couldn't really speak to anyone at that time or voice an opinion to anyone, because your hormones are a bit weird anyway.
Q. Yes there's a lot to think about.
A. So I got home and just sort of dealt with getting on with it. I would still like my support worker but I hadn't actually told anyone else of my diagnosis at all.
Q Why was that?
A. Well, mainly, as time went on I wanted to tell different people, you know, my friends and things, but my partner at that time, who, you know had transferred the virus onto me sexually, didn't think it would be appropriate because it would impinge on the confidentiality of his diagnosis.
Q. And that was important to him?
A. I suppose so, and he works, or he did at that time, don't know if, does any more, in the field of HIV and AIDS, drug abuse, so he's quite a well known character, and plus the fact that a lot of people knew his diagnosis, because he founded PST years ago, before it got premises, but, people, as time went by, people already said I was negative, when people had asked him, he told them he told them I was negative which made it harder for me if at any time I chose in the future to tell anybody. So I went four years without telling anybody and, as time went on, it got harder and harder not to say anything, because when, it was like sitting at the back of my throat just dying to spit it out. And another thing was, regarding especially one of my friends, I felt that I was lying, or not being the person I actually am, mainly because I was having to hide so much of different aspects of my life. I never really went up to the X Hospital for check-ups, very rarely. I was very despondent with the medical staff. I tried to change my GP after I had my little girl, mainly because I wanted a female GP, I thought it would be better. And also because my GP was a family doctor, he'd known me for years. He knew my mother and my brother who I had no ../../../../../contact.htm with. Not through the virus, but that all happened at the same time through totally different reasons. So I thought a female doctor would be much better. It turned out it wasn't, because naturally Mary was born positive, and there was quite a high percentage that she would lose antibodies and become negative. So, when I went, I went to see this female GP. I asked her if nothing could be written on her records because of the stigma I had suffered. I knew exactly what it was like. Until I was sure either way whether she was going to remain positive or whether she was going to produce anti-bodies. This female GP said that I obviously wasn't thinking of my daughter's interests. She was only a new born baby at the time and, if I really really cared about her I would have it written down in her notes, and I said 'but all I'm asking for is a year, so there is no written evidence for when she gets older, if she is going to become negative, to say well, at one point she was positive and then all that stigma and discrimination comes into it again'. Well, she was totally, 'No, no way' and made me feel like I was neglecting my child in some way for even having the gall to voice such an opinion, to say such a thing. So I ended up walking out of there in tears, and I just found another GP who was fine about it not being written down, and, as it turned out, she lost anti-bodies on her nine-month blood tests. So, between six and nine months she was negative, I've always got her checked regularly from the X Hospital. I still do once a year. She's still negative and there's nothing on her notes, which is very very important for me, really important.
Q. Before we move on to what happened after, could you tell me about how your GP supported you in your pregnancy? Presumably he was aware of your status.
A. My GP never supported me in any way in my pregnancy. I can't remember any support being given in any way. What can I say? When I found out I was pregnant and I explained that I'd learnt shortly beforehand that my partner had the virus, I explained the situation, he made the appointment at the X Hospital. I went up to the X Hospital, got tested, got diagnosed. I did get them to tell my GP. I was offered no support at all.
Q. And he didn't mention it?
A. No, and even now, or in the past, when health issues have come, the virus is just brushed off like: 'No, no, look at you, you're healthy, don't worry about it'.
Q. And would you have liked him to talk?
A. I would have appreciated it at the time. It was easier for me to deal with it by not dealing with it at the time. I was pregnant, my grandad who was my father really in that sense had just died, so I was coping with that grief. And, but there was a lot of different worries for me, I had to go for information, like, not to breastfeed for me would be a bad thing for me, about the scalp electrodes, just different procedures, from booklets I found, but as to forthcoming from my GP there was not one thing, I don't think it was a factor for him at all. He'd known me since I was eight years old. I came in, I was pregnant and I had the virus to go with it, but -
Q. It didn't make any difference?
Q. And it still doesn't?
A. I'm changing him. I've been meaning to change him for ages; it's just because that female doctor really put me off. All medical staff really really put me off, but I believe nowadays it has changed. And since then I have spoken to my gynaecologist I had at Y Centre, in confidence, last year, and confronted him on different issues. That was like four and half, five, years I've been wanting to ask this man all these questions. Why I was treated the way I was, why it happened, and he was totally appalled.
Q. He was?
A. He really was.
Q. So things have changed?
A. He took me aside afterwards, and he apologised. He was really sincere, which is just a positive thing that came out of it. But there was nothing my GP did and still isn't.
Q. And the X Hospital? What kind of support have they given?
A. Well, I went from the X Hospital to the Z Hospital, I went to the X Hospital, not very much at all. Again, up there you are just treated like a number, just a statistic, come give your blood, go away, and because I am in the category of healthy, then it doesn't matter what is going on with me mentally, as long as I am physically healthy that's fine. It doesn't matter that the virus, I mean that at times I've really wanted to commit suicide, because of this virus, in the past, you know. The thought has definitely been there, the depressions, it doesn't matter whether you are ill or not, you are still having to deal with having to live with this every single day, hanging in limbo, waiting for something to happen and having to arrange things like your will and the future for your child or children or whatever. You still have to face all these different factors. But the X Hospital, that's how I see them, I got back and got my results, and then I went to the Z Hospital, because I wasn't really happy, they actually made me feel worse going up there, it just made me feel really bad. I went to the Z Hospital and saw SO and he wasn't much better, to be honest. I was seeing a counsellor as well because there was a lot of stuff going on for me at that time. I had just left my partner, I was just disclosing my diagnosis to a lot of people, there was a lot of different issues. My counsellor turned round and said to me, 'if you get any more nightmare stories you just give me a ring'. I said I had been talking about things that had happened in my life. What an attitude - 'nightmare stories' - it was my life we were talking about. So I was scunnered by that as well, I just thought he was very blas, you know, about this. So, I just didn't go anywhere for ages. And I think that's when I started at RC.
Q. Could you tell us what that is.
A. It's a Resource Centre for people and their families affected by HIV and AIDS, either affected or infected. I had been in touch with PST, which is a similar organisation although on a smaller scale.
Q. They support self help, don't they, PST, whereas RC has different things on offer.
A. Yes, but PST does as well, maybe on not such a large scale as PST does have, you know, aromatherapy, shiatsu, different therapies, complimentary therapies or whatever, and they help on other issues as well, so you're meeting different people, going in for a coffee, or a wee chat or whatever. I was involved with them for x amount of time. But, because obviously my ex-partner founded the place and was very much involved, it caused me quite a few problems. So, I started going to RC and I done a laughing workshop. That was the first thing I did, two years ago. I thought it would really help me. It was a laughing, crying workshop to deal with feelings today, emotions, and it was during there that I met a lady and we did eventually try and form a women's group. She was another heterosexual woman who caught the virus heterosexually; non-drug user, the same as myself. And we did try to set up, we thought there was a great need to try to bring other normal, I don't know the word for it, non-labelled woman, not a drug user, not a gay woman, just where everyday women going back and forth to work or whatever.
Q. Somebody who doesn't fall into the ready categories?
A. Yes, somebody who doesn't fall into the wee spots, the wee boxes.
Q. And why do you think that is important? Do you think people like yourself lose out because you are not labelled in that way?
A. I would say so, I don't think people know we exist you know. I think it still really surprised me how much ignorance there still is towards the virus, there's still a lot of people out there who think it's them or us. And it's either gay men, or just junkies. It has to be a category. And at the end of the day I know that there are thousands of women out there who have caught it by sleeping with a guy who has had the virus, whether he's caught it through drugs or whatever. But the point is that she's just went out like thousands of women do. Maybe they sleep with this person and got the virus for one reason or not, they've not been for a diagnosis and because if they have had a diagnosis it's very very hard for them to come out because they are not labelled, which I would say in a way we lose out, because I don't think heterosexual women are really recognised, not in Edinburgh I would say, maybe in London, you've got Positive Women. But, in Edinburgh, I'm not aware of any organisation and I've had my diagnosis six years, and out of that time I've met two women, apart from myself who've caught the virus. Two women, (that's three) that's all I've met.
Q. So in your opinion, there are lots of women out there who could get together and give each other support?
A. That was the idea behind it. It was like getting the women to come together, nothing heavy, just come for a chat, or arranging social nights out. Not to be based on the virus, but at least the virus - I mean you are aware of it if you want to talk about it. But it just didn't happen. It ended up me and this other woman, sitting week after week. We put leaflets up in X Hospital and different organisations we could think of. And we sat in RC every day, the two of us, and we just got really really despondent. Since then, there has been a women's group which has been quite ongoing which does photography and different things but that was quite slow to start off with. And I did go a few times, but I would say that the majority of women there were ex drug users or still drug users and, of course, I had lived with a drug user for five years and caught the virus from a drug user. My personal feeling was, I didn't want to be sitting staring at another drug user who was still using drugs.
Q. Who helped you try to set this group up?
A. As an organisation?
Q. Was it RC?
A. Well, the Women's HIV network which is down in 0. Street. They were very very supportive. That is where we set up Wanda, the newsletter. That's where we started after trying to set up this group. So they obviously supported us by giving us the space and time and room to be able to hold these meetings in. And, I suppose, the X Hospital for letting us put a couple of posters up there, but nobody was actually. Women HIV/AIDS network were the best as a verbal support. Nobody really came along and said 'this is what you do, I'll help you do it, here's our Resources you could get in touch with'. It was all basically off our own backs. It never worked. So then we started up a newsletter called Wanda which was based at the Women's HIV network as well, and I believe it's going OK, it's going really well. Comes out once a month, It's the same things as what the group was trying to do, you know, get in touch with women from all over. Whether it's pen pals or different things, you know. I still get copies every month. And it's getting there, definitely. We tried last year doing a wee tent-selling T-shirts and trying to, and it went OK, slowly but surely. I have been really really involved with things in the past, trying to set up women's groups etc. Some things have been successful: some things haven't, trial and error. The virus isn't 100% me, it's only a small compartment of many factors which make up me. People in my life who I regard as being really important are aware of my status and it's made no difference in their opinion towards me and I have to say I am really thankful and grateful in that way, because they knew me as N. before and they see me still as N.
Q. In conclusion N., it sounds as though you think that being a positive woman who doesn't fall into any of the categories is difficult in itself and approaching services and approaching people and asking for appropriate help is difficult because you are sort of not seen, can you see any way whereby services can provide relevant services for women like yourself what would need to happen?
A. Well, I'm sure places like the X Hospital and also Z Hospital do have other heterosexual women on their own, who they have diagnosed who fall into my category, although it's not a recognised category as such, and I know it's like a breach of confidentiality to give out names, but! think it would be worthwhile if women, like myself were referred to different agencies and then these agencies could have names on their list and then therefore people could get together maybe once a month or once every six months. And not only, but women from all sorts of walks of life, workers in the field. Because of my experiences in the past, I know that it was a really really hard fight to try to get women to come forward. I know people at the end of the day are round the hospitals obviously because they are aware who is coming in and who has been diagnosed and how they've caught the virus. Getting together or being more in touch with different organisations, that's the only way I can really see it ever coming off the ground, I think it's going to get a long long way away.
Q. To make the invisible, visible?
A. I really do, a long hard fight, a long hard struggle.
Q. But is sounds as if you've done a lot already.
A Well I think we will have done if this newsletter carries on. That's like growing every month and there's people from, like, all over, even all over the world, different parts, you know, pen pals, like in Africa. Time will tell.Q. Well thank you very much N.