Prime minister. Revolutionary. Warrior. King. When Rebecka, Shayan, Jonas, and Moa get in front of the camera, the result is not just a series of magnificent images – it’s a thought-provoking reminder of who we allow to be seen. Or, maybe, who we’ll allow to exist.
Text: Klas Ekman
Photo: Emma Svensson
A few years ago, there was a summer camp in Portugal for the supporter club of Glada Hudik-teatern, a Swedish theater company made up of actors with different cognitive abilities and disabilities. After a week of acting, singing, and dancing, the trip concluded with a Portuguese-themed photo shoot where the sixty participants got to be the models. The photo project was the brain child of Linda Sandberg and Helena Andersson, who are makeup artists for the theater troupe.
Pär Johansson founded Glada Hudik-teatern (Happy Hudik Theater) over twenty years ago, when he worked at an activity center in Hudiksvall. Ever since, he and his actors have amazed both themselves and the rest of the world. They’ve put on a number of successful shows, like Elvis and The Wizard of Oz, performed all over the globe, and starred in both a documentary series and two dramedy feature films.
But, Johansson felt, there was something special about those shots taken in Portugal.
– There was a dimension in those photographs that I hadn’t really seen before, he says.
– When they were given the space to be beautiful, the results were amazing. And you could tell, both in their reactions and in their families’.
After that trip, Pär Johansson, Helena Andersson, and Linda Sandberg brought four of the best shots to Per Broman at Fotografiska. He liked their idea and brought in photographer Emma Svensson. That was the impetus for the exhibition Icons.
“It felt important that these images really captured who they are”
Thirty-six-year-old Rebecka and Shayan were photographed as prime minister and revolutionary. Twenty-four-year-old Jonas got to be king, and seventeen-year-old Moa was a medieval warrior. And so on.
– A lot of people will say that being different is important, and beautiful, says Pär Johansson.
– We also like to say that anything is possible, and that you can be whatever you want if you try hard enough. A lot of people think that’s true, but it’s not. Have you ever seen a police officer with Down syndrome? How would society react if the heir to the throne had Down syndrome? And what are our physical ideals really like? Those are the kind of questions and thoughts we want this exhibition to evoke.
At the same time, the exhibition wasn’t just meant to raise questions, but to portray actual people. Yes, Emma Svensson did work from classical archetypes like queens and super heroes, but every image had its genesis with the models, who were interviewed beforehand.
– These characters really match up with the personalities of the people we were shooting, she says.
Pär Johansson agrees.
– It felt important that these images really captured who they are. I know these actors, so I can tell that they absolutely did. Jon, who’s been shot as Marlon Brando, is so handsome and a hit with the ladies, but people rarely get to see that because people with Down syndrome tend to be portrayed as cute. And sure, they can be cute and sweet, like anyone else, but like anyone else they’re also people with dreams and visions.
One of the photographs is of actor Mats Melin, famous in Sweden for his role in a long-running series of commercials for grocery giant ICA. He’s pictured at a taped-off crime scene.
– Mats’s big dream is to play a cop in a Bruce Willis movie, so there really wasn’t much to discuss there. These pictures aren’t just of people dressing up, they’ve captured so much more. And that makes this project feel extra special, especially now, says Johansson.
Consider where the lines are drawn
Fewer and fewer children are born with Down syndrome, due to fetal diagnostics. A series of articles in Aftonbladet, accompanied by Emma Svenssons images, had the title De utrotningshotade – “The endangered”.
– You shouldn’t question people who get abortions, but it does say something about science and how forgiving a society is of difference and aberration, says Pär Johansson.
– What will we allow as criteria in the future? Gender, hair color… We don’t want to make anyone feel guilty, but we do want people to consider where the lines are drawn, and where we want them to be.
The exhibition opened on March 21st, World Down Syndrome Day, and was made up of 21 portraits – 21 being the number of the duplicated chromosome.
– The power of photography is that it allows for a lot of interpretation, but also that it can affect you so strongly. That’s the big thing, because that could change the way you look at things. Maybe it can help people understand something new about diversity, and learn to think a bit differently. I think they all came out amazing. Just the opening was worth all the hard work. All their families showed up, siblings, grandparents, and a lot of people cried tears of pride.
For Emma Svensson, that warmth and community was present through the whole process.
– It was all hugs straight off the bat, no initial hand shakes or anything, she says.
Down syndrome is a developmental disability named for Dr John Langdon Down, who in 1866 was the first person to describe the syndrome. It stems from an extra 21st chromosome, where most people only have two. It affects the development of the brain, and also the person’s appearance. There are no known causes for Down syndrome, though the chances are higher the older the mother is. The number of children born with Down syndrome has gone down, because of advances in fetal diagnostics.