Disability on Display – Part III: 21 portraits for chromosome 21
Author: Anna Derksen
Part III: 21 portraits for chromosome 21: ‘Ikoner/Icons’ at Fotografiska Museet, Stockholm
In an era in which prenatal screening has made it possible to detect and prevent genetic and chromosomal diseases, disabilities such as Down syndrome are becoming increasingly rare. And as their number dwindles, some fear that a significant component of our social diversity will disappear with them. But have people with Down syndrome ever really been visible before? No, the exhibition ‘Ikoner/Icons’ by Fotografiska Museet in Stockholm postulates. On the contrary: “From times immemorial there has been a group which had constantly been neglected, excluded and made invisible; those who are born with Down Syndrome.”
Driving force behind the exhibition, which can also be viewed online, is Glada Hudik Theatre, a group of actors with and without intellectual disabilities. The initial idea came up during a photo shoot at the group’s summer camp 2015 in Portugal. In collaboration with Fotografiska, the photographer Emma Svensson, and the costume designers Linda Sandberg and Helena Andersson, 21 professional portraits were created that show the models in their own dreams and ideals – as a Barbie in a room full of pink items and attires, a replication of rebellious Marlon Brando lounging on his motorcycle, a renaissance artist in his atelier full of books, stuffed animals, fruits and dried flowers, or as a policy officer looking thoughtfully at a crime scene.
Visually the images depict well-known stereotypes, and yet are very beautiful in their presentation. But the exhibition goes beyond the visual, it is not merely ‘dressing up’ that is presented here. Quotations and interviews with the participants, who tell about themselves, their dreams and aspirations, and also with some of their family members, show that the exhibition takes its models seriously. Instead of focusing on the cliché of persons with Down syndrome as the ‘sunshine’ people with continuous good mood, it gives them individuality, personality and agency. As they perform their own dreams and idols, it is not difficult for the visitors to identify with them. For many, it will probably be the first close-up encounter with persons with Down syndrome, and maybe the first step to look beyond the genetic disorder as a purely medical phenomenon. The realization that the similarities are actually much bigger than the differences comes natural when viewing the photographs, here we see persons who have the same kinds of questions, interests and motivations in designing and leading their lives.
“Having Down syndrome is hard to explain. It’s only familiar to me. Some people are tall and others are short and they don’t reach as high. That’s how it is. I feel that others think things about me, but I don’t really know what they are. It feels strange when someone rolls their eyes. I’ve worked for 10 years as a breakfast hostess, it’s fun. I earn a very low salary. I don’t know why. I’m good at sign language and think that it could be a job.” (Julia, 31, The Saint)
The message the organizers of ‘Icons’ want to raise is clear: how we as a society want to engage with deviation and divergence. The exhibition critically reflects upon the fact that Down syndrome will be extinct before soon, as most cases detected by prenatal screening are being sorted out before birth. The photos portrait them as a part of human diversity, though largely ignored by history, that understood as such can hold up a mirror to ourselves, as the accompanying press release states:
“It is said that you can judge a society’s cultural standard by looking at how they treat some of their most vulnerable; the condemned and those with disabilities. What they have in common, as well as everyone else, is that one of the worst things we can suffer from is isolation. To not be a part of the community, to be left outside, is fatal for the herd animal that is human.”
It is to be hoped that the exhibition not only attracts many visitors who can enjoy the aesthetics of the portraits, but may stimulate thought and inspiration about who we want to be as a society.
“Every day, I write poems about love, it’s my job. I have an office, I must be alone. I listen to dance band music as I write… love, it is warmth, community, respect. Different is the best word. I am different and I’m not sorry, I have my love music and my poems. I have a girlfriend named Ida who is beautiful like me. I’m doing well.” (Mikael, 49, The Artist)
Links and further readings:
- Starbuck, John M.: On the Antiquity of Trisomy 21: Moving towards a Quantitative Diagnosis of Down Syndrome in Historic Material Culture, Journal of Contemporary Anthropology, Vol. II issue I, 2011, pp. 62-89.