How did you get it? Gender dimensions of HIV-related stigma
To mark International Women’s Day 2023 and this week’s Australian National Day of Women Living With HIV, we share the personal experiences of Susan Paxton, PhD, as an Australian woman living with HIV.
I sat in the dentist’s chair waiting. In came a man dressed in what looked like a white space suit, a Perspex screen wrapping around his face from his forehead to below his chin. Tears welled up. I thought, “This is how people will treat me from now on. I’m untouchable.” It was early 1991 and I had just been diagnosed as HIV-positive. It was my first contact with a health care worker outside the HIV sector.
The following year, I fainted in my bathroom, hitting my head on a tap and splitting the bridge of my nose. A friend from UK was staying with me, fortunately, and found me unconscious on the floor. She called the doctor whose surgery was two doors away. When the doctor arrived, I said to her, “I just want you to know that I’m HIV-positive.” She stepped backwards and replied, “Ah. You will need to come up to the surgery in twenty minutes.” Ten minutes later, my friend answered a phone call from the receptionist saying they could not treat me because they had no way to dispose of the dressings, so I would have to go to a public hospital. I did eventually get treatment, my nose received five stitches, and I was left with a permanent scar.
This was way before we had triple combination anti-retroviral therapy which enabled us to have an undetectable viral load and thus be unable to transmit the virus to others. However, I lived in Australia, at that time there were about 200 people with hepatitis C to every one person diagnosed with HIV, and all health care facilities practiced universal precautions.
Over the next few years, I got involved in the Asia Pacific Network of people living with HIV and I conducted the first regional study of HIV-related discrimination. (Later adapted by the Global Network of People living with HIV as the Stigma Index.) Most people (54%) experienced discrimination in health care setting: being refused treatment, delayed treatment, breaches of confidentiality. Women faced consistently more discrimination than men did, including coerced abortion. Research I conducted a decade later, “Positive and Pregnant! How Dare You”, highlighted astoundingly high levels of coerced sterilisation among HIV-positive women in several countries.
It is not surprising that we face more discrimination from nursing and other health care staff than elsewhere, because that is where we are most likely to disclose our HIV status, and health care workers are a cross section of society, and reflect opinions within the general community.
What took me a long time to realise was that stigma towards women living with HIV was markedly different to that experienced by men.
Over 20 years ago, when I was about to undergo my first angiogram and was partly tranquilised, the doctor asked me, “A druggie, are we?”. At that moment, I was terrified that I might be treated differently, less caringly, depending on my answer, and I replied that I was not. Ever since, I felt angry that I was in such a position. The question felt insidious, deeply personal, and judgemental. Since then, I have been asked the same question many times, “How did you catch HIV?” When I spent a week as an inpatient, every student doctor asked me how I got HIV. I now have a stock reply, “The same way your mum and dad got you”.
Late last year, I had another day procedure, and the anaesthetist asked me the same question, “How did you get HIV?”. I gave him my stock response and then asked him why he had asked that. He said it was to determine whether I was an injecting drug user. I replied that I had already answered his questions on drug use, so it was redundant, unnecessary, and intrusive.
The fact is that almost every woman in Australia contracts HIV sexually. Australia has an outstanding record of low HIV rates among injecting drug users, thanks to harm-reduction policies implemented early. Globally, the highest risk for a woman to contract HIV is being young and married. One might expect medical professionals to know this by now.
Asking how one contracted HIV is intimidating, inappropriate, unnecessary and implies judgment. It has no relevance as to how one should be subsequently treated. And curiously it seems this question is rarely, if ever, asked of males. In my discussions with many men living with HIV, none of them have ever been asked how they contracted the virus.
Why are women asked this question so frequently? Why women, and not men? Is it ignorance of the facts, or yet another example of the misogyny women experience in society? Are we always being judged as either virgin, mother, or whore? Must we always be questioned to determine whether we are good or evil?
My local hospital received a complaint from me which will be sent to all anaesthesia staff. Small steps…
Susan Paxton is a passionate advocate for the rights of women living with HIV and is committed to developing leadership skills. Susan has worked in over twenty countries in the Asia-Pacific region. and in 2000, went public about her HIV status when she carried the Olympic Torch on behalf of people with HIV.
“My academic research indicates the significant impact of positive women as HIV educators. I conducted the first regional peer-led documentation of AIDS discrimination in Asia, which found women with HIV face significantly more discrimination than men do, and led to the GNP+ Stigma Index. Among my many publications is “Lifting the Burden of Secrecy”, a positive speakers’ guide that has been translated into over a dozen languages, as well as “Positive and pregnant – How dare you”, which highlights violations of positive women’s rights within maternal health care settings.
As a long-term HIV survivor, I have lost well over a hundred friends, colleagues and lovers to HIV, and I live with that sadness. Over a decade ago I began painting, and that calms me immensely. My work can be seen at VisualAids.org“.