Thanks to effective drugs, people with HIV can live long lives. But many are frequently subject to discrimination, because their surroundings have an outdated idea of the disease, or lack knowledge of what it entails.
鈥淔rom a medical point of view, HIV in Sweden is nowadays less dramatic than it was in the 80s and 90s, but socially not enough has happened. This is according to my respondents,鈥� says Desire茅 Ljungcrantz, PhD at Link枚ping University鈥檚 Department of Thematic Studies.
With twelve in-depth interviews, autobiographies, documentary films and auto-fictitious texts, the study illustrates society鈥檚 conceptions about HIV and how it can be experienced. It is an unusual doctoral thesis, where the author doesn鈥檛 observe a phenomenon from a safe distance. Instead of depicting 鈥渢he HIV-positive person鈥� against a backdrop of infection prevention, she positions herself on the side of the disease, using an alter ego to tell about her life with HIV. The thesis touches the reader in a way that is rare in academic writing.
Coming out of the HIV closet
The image that emerges from the respondents鈥� stories is a life full of considerations as to whether to reveal or not. Should I tell the staff at my daughter鈥檚 preschool that I have HIV? Should I leave my medicines out in the kitchen, where guests could see them? It is in the interaction with other people that HIV becomes so tangible. In the cases where the respondents do tell, they say the response is one of silence and avoidance.
Fear and shame are also recurring themes for the respondents. But there are different types of fear: fear of getting a bad reception and being rejected, and the fear of transferring the disease to others, although according to scientific studies this is very unlikely when the person is aware of their HIV status and is medicating appropriately. Shame can arise when you realise that other people see you as an unfortunate person, who deviates from expectations, ideals and norms.
鈥淲e often distance ourselves from HIV. It鈥檚 鈥榦thers鈥�, in time and space, who get the disease. This is why it鈥檚 important for me to broaden that image, to get close to people with HIV, and to show them as individuals. I hope this thesis gives people with HIV a voice,鈥� says Desire茅 Ljungcrantz.
Suggestions
Based on the discussions that Desire茅 Ljungcrantz has had with her respondents, she has some points that can make life easier for people with HIV:
鈥e need meeting places where people with HIV can meet, without having to come out.
鈥n schools and healthcare there should be better awareness of what a good reception is.
鈥he media needs to be mindful of how it can report on HIV in a less emotional way.
鈥ociety should reflect on the doctor鈥檚 role as someone who both provides care and who monitors the patient, e.g. that the patient must follow the Swedish Communicable Diseases Act, which can put the patient in a vulnerable position.
鈥nyone can get HIV. Treat a person with HIV as you would treat a friend. We should reflect on what emotions such as fear and shame do to us as individuals and as fellow human beings, both on a personal and a social level.
鈥e need more norm-critical discussions on how we should live and who we see as acceptable. We should reflect on how we create 鈥榳e鈥� and 鈥榯hem鈥�, and how this excludes some and includes others.
Thesis:
Skrubbs氓r: ber盲ttelser om hur hiv f枚rest盲lls och erfars i samtida Sverige
Published by Makadam f枚rlag