In Malmö Art Gallery (Malmö Konsthall), Linda, Simon and Steve met listeners in the C-hall to talk about HIV over generations. The conversation provided an overall picture of HIV over time and what it is like to both live with and live close to HIV. The panel discussed, among other things, its first encounter with HIV and shared its own experiences from different eras. The panel discussion was part of the collaboration between Malmö Konsthall and Positiva Gruppen Syd and arranged in connection with the exhibition “Leonilson – Drawn: 1975–1993” by José Leonilson, which can be viewed at Malmö Konsthall until 10th of October.
Participants in the panel discussion
Steve Sjöqvist is from Gävle but now lives in Stockholm. He has lived with HIV for 34 years and has appeared in several documentaries and articles where he tells about his and others’ stories with HIV.
Linda grew up with two parents who lived with HIV in the 80s and 90s. Today she works at Positiva Gruppen Syd.
Simon Blom has lived with HIV for 10 years and has been active in the HIV movement in Sweden since 2012. He currently works at Positiva Gruppen Syd.
The conversation began with the participants in the panel describing their first encounter with HIV.
Please note that this conversation is largely based on a historical perspective of HIV. There are still challenges to living with HIV, but with treatment, HIV today is not a deadly disease.
“What I think about is how strong I felt. I got my HIV message in 1987 and I had been abroad, in Saudi Arabia and the United States, it was an active time in my life, and when I came home in 1987, I came home and felt powerful, it made me powerful in receiving an HIV diagnosis. “
“I was a child of parents living with HIV, so I do not remember exactly the first meeting, but they told me during some time in the late 80’s. But my meeting was a meeting of concern, I was worried that they would pass away.
I am a parent myself today and I am amazed at how my parents were able to take steps forward, despite the circumstances. Among other things, I saw how my father went out fishing to find strength. At the same time, I know that as a child you take responsibility. As a middle school child, I replied that I would become a researcher, I would find the cure for HIV. I grew up in a small community and I did not see the other children taking, or having to take, that responsibility as children. “
“ I had no answer to that then but I just ran damn fast during those years “
“I was going to write a book called Fotspår, 2008-2009, and was in contact with Johanna who got HIV when she was 20 years old. I was so touched by her story and it was so nice to be able to think and tell someone that you do not need to inherit my experiences, follow in my footsteps. It was very healing for me. It also became so clear what I had struggled with, I wondered all the years 1987 until 1995 when I started to get sick, how I managed to live all those years. I had no answer to that then but I just ran damn fast during those years.
At the same time, Johanna was wondering, among other things if she would find someone to live with, and we still have contact, now on Facebook because she lives in Gothenburg and has two very sweet children. So, of course, there are generations, and that’s why we’re sitting here. We must understand what happened in 80s and 90s in order to understand the times we are living in now.
We can go on to compare both with the Holocaust and the Finnish children of war, and how these other events and stories, often skips a generation, it is such a deep trauma for those who have been through it themselves, its only when others ask the silence is broken many of the stories appears and comes into light..
So conversations like this are so important, and I’m happy, I feel proud to be able to sit here today and I think it’s so good to have conversations, because it’s not a given at all. “
Simon “I thought that maybe, to give a little context to everyone who is here today. HIV was discovered in 1981 and 1982 the first case was discovered in Sweden. So next year it is 40 years since HIV came to Sweden , and the first treatment came in 1996. The situation has changed a lot over time, for example regarding the infectiousness that you can see on the cookie jar that is behind us.
We also have the duty to inform status, which has changed over time, that people today do not have to tell after they have achieved a well-adjusted treatment, and not to mention the medicine that today is significantly better than before. The hope is that those who get HIV today can get medicine early, so they live can live normal lives, at least that is the hope. “
“Yes, absolutely, the medicines, I remember the first medicines, me and my husband Bengt were in Mallorca and you know I vomited in bushes and trash cans, I even had a diaper on me. I do not know, but Linda, your parents, how did they experience this? “
“My parents did not tell me specifically about the effects of the medication, and that was perhaps what I missed most, and what is most clear from then and today, is that today we can listen to podcasts, we can talk and be more open, and I missed that opportunity back then, I had so many questions, and I felt I did not want to burden my parents with that anxiety.”
“We talked a bit about it before we started the conversation here today, about this silence, I know that the families I met, there is still a great deal of silence, and even if we sit here today and talk, the silence somehow still prevails. We are all activists in some way and have made active choices and all, but I think it is still present in many people, that silence. “
“How have you dealt with your shame, because I really have tried to stand up for myself?
“I think it’s also the driving force, the shame and the guilt. I’m a bit anti-stigma, because that was something we invented there, but guilt and shame are such classic concepts, in relation to not be ashamed.
At the same time, I make this reflection when I work, I work at a large emergency hospital. I think people are lying in hospital beds – ashamed.
“Well, here I am,” someone says. Yes, here you are, I say, but it’s good that you’re here, you’re sick!
How have you worked with your shame, because I really tried to stand up for myself, even if it was not done in a jiffy and I had parents who stood up for me and supported me, and I knew that. “
“Since we’re still talking about this with generations, Linda, you’re in a generation after Steve, and we’ve been talking about openness, and for you it’s been an ordeal to have this conversation today.”
“Yes, undeniably, it was a trial, I have not talked about this publicly before and I noticed that I had a strongly internalized stigma. Especially the silence, what I got imprinted from home – do not talk about this with anyone, and I think it was a survival strategy for my parents in the 80’s, and it has continued with me. I have not, before this, wanted to open that lid and it has been a process, to understand that it is not my fault and shame, it is not anyone’s guilt and shame. “
Simon I remember, I was 24 when I got my HIV diagnosis, and figured out I could not lie, people asked me what had happened, I got sick right away in a pretty severe primary infection . Lost 10 kilos in a short time, almost crashed, it went that fast, although it was unusual. I had no power, nothing left, I was so bad. When we talk about people, we can compare those who never get sick and get medication, and with myself, I compared myself to the older generation, to your generation, Steve, who had no medication in the beginning. So I inherited more from the older generation, and that was also how my surroundings saw me. I then felt that it was something shameful, I should be healthy and that notion affected me.
I was also pissed that people in the health care system said that we should be silent about it, about all things HIV really. Even though I or we did not belong to your generation, we would inherit this legacy of shame. And I chose to stand on the barricades, but I also know that after a few years I wondered if I regret this, no one thanks me for this, maybe I should change my name and change my career and go after what I really wanted to do. Is it worth this, more than the people you have met and touched, which are many, but it also has its price. “
“This is what I was thinking, on March 9 we got our first covid patient at St Göran, then I do not even remember the date, but all of a sudden whole wards were full of covid, and I thought but hey here I probably need help, I have a parallel story that is being played out I told my co-workers. And it’s so much the same scenario, I think of this when you tell me you got sick right away. It was like covid was just like those who came in and had contracted pneumocistis pneumonia, a HIV-related pneumonia, in the 80s and 90s.
It has been very strange.
It has really changed, because when I got my diagnosis, then we were the ones that no one wanted, no one wanted us, drug addicts, gays and like prostitutes. Then I think that I and we can get a fresh start, in the middle of this with covid, to work with those who have not been desirable.
Then, like what you say Simon, was if it worth it. I think about this too sometimes, just like you say. I have been so public with having HIV, but it may be a little different there as well, between generations. “
“Yes, we have had this image of a special target group of those who get HIV, that we early categorized people as risk groups, it must be counteracted today, that not only certain groups get HIV, or corona for that matter.”
“Yes, isolating all 70 plus folks I think has been so damn provocative, it’s age discrimination and how you look at old people. We do a bit of the same thing as with HIV in the 80s, but in other guises, and it will create stories that are certainly being written and told about in the future, and we should take action on that. “
“Linda, I was thinking about this, back to a little bit of the openness and silence, how did this silence change over time? Did it become a different mood, for example, when your parents were given medication.”
“It might have been a way for my parents to protect the family from even more exclusion”
“The silence continued, we lived in a small community on the west coast. And there were probably several reasons for the silence, we were the only racialized family so maybe it was a way for my parents to protect the family from even more exclusion. And sure there is research on when to tell, but then it is also the parents’ choice. But parents need to feel safe to break the silence and feel safe with the situation in preschool, with playmates etc. I am thinking, for example, of one of our contacts, I work in Positiva Gruppen Syd, where a parent is open and lives with HIV, and I get so happy when I see that strength and pride, because I did not feel that when I grew up and it gives back to me a lot, that I can see in others, what I did not have, this I will not be ashamed feeling. “
“Yes, oh Linda, I am completely taken by what you tell me. I think all of us who sit here, we probably know a lot, but there is so much work left to do, this with undetectable – untransmittable, power structures, the work for women , a very important task – HIV is a gender issue. “
“You were inspired there, almost a little spiritual, Steve. How have you have dealt with HIV, on a personal level, internally. There are a lot of conflicts in a way, how we deal with difficult situations. But how has your spiritual journey been?”
“Yes, and I look back here when I was interviewed once. A journalist came to my house. I have been interviewed several times and been in three documentaries, but this time, at my house so… she asks me to watch me in the mirror. Then it was like pulling down my pants on me, and I just could not hold back then. Then I said that I see that I have sad eyes, I carry a very heavy grief. I see it in others too, I works with pastoral care, but there are far too many who carry around that grief.
I remember when I turned 35, and my parents wanted to give me a trip around the world, and I said, I just want a big party instead, I probably wont turn 40. But you can not run away from yourself, and now I am older and what has been means more and I can see it more clearly. And that journalist, I can see what she did to me and how she did to make me talk about these things, opening that door to the soul. She had a code.
Then I have this outlook on life, even though I am secularized, I have gained a lot of strength in taking a little bit at a time and being able to rest. Have confidence in something of a good force. “
“For me it becomes clear, there is a sadness about having to go through this, there is a silence, in our community, but somewhere at the same time a strength.”
“ I have to raise my voice a little more then – it is not reasonable to live in silence ”
“Yes, very strong strength, now I feel the activist in me coming out. I remember, in Luleå I believe it was, at Sunderbyn Hospital, and a man came up after a lecture and said” I came here because I have read what you wrote, but only my doctor knows that I have lived with HIV for 25 years. “And that, I think, it is not reasonable to have to be silent like that. There I also saw a deep sadness, and I thought , I have to raise my voice a little more then – it is not reasonable to live in silence.
I would like to ask you Linda, I was so deeply touched, your parents are no longer alive, and what do you think about that? “
“Jaaa, my parents are no longer alive, my mother died in 2009, 46 years old and my father three years ago, he was 64. It is difficult, a grief. It is, I think, something that everyone who lost someone carries, no matter if its one or two parents. My grief is a bit rooted in the fact that they could not reconcile with their diagnosis, and they had been physically, mentally, financially affected after the 80s and 90s. I would have loved to see more of my parents, without the weight that HIV meant and put on them. At the same time, I have also had to face my pain and my grief, and I realize now that it is also very liberating to be able to forgive myself, partly because we did not have a great relationship, I understood that they might not be so happy with their parenting and we lived very long with a parallel grief together, I knew they would go away, they knew they would leave us, and my mother not get to see grandchildren, but she still bought clothes for them and it is one of the most precious things I have today. Today, I also understand them through the encounters I have with others living with HIV, and I carry with me their love and mine. My children do not yet have the whole story about their grandparents, it is part of our common story and they will one day find out. It is a mixture of sadness, memories and love, which I think can coexist. “
Question from the audience:
“You are still here, you probably know many that you lost, have you thought about why you are still there? And that they did not get the chance?”
“Yes, this with survival guilt. I got antiretroviral drugs in 1996, and six months later they closed half the ward, and six months after that they closed the whole ward. But then there was a room where you went to get day care, and I did not get healthy right away. In that room, there were four of us, one guy was blind and ……. the other two had HIV related problems, it had affected their brains, then it was me who was just in pain, I got morphine and I could walk around with my drip stand, the others could not, and I had to help the others with a little bit of everything, visits and so on, but in the end it was just me left, it was just me who survived.
This to get involved in others, somewhere I think it was a consolation and a strategy for survival. Other peoples fate and stories, it touches me, it becomes a protection against becoming a victim, or seeing oneself as a looser, it gives me a different perspective on myself. It’s like I feel I have a responsibility to others. “