In Iceland, photographer Stigga Ella started capturing pictures of people with Down syndrome to shed light on the ethical questions of where we are headed as a society with today’s ability to choose who is born based on prenatal testing for genetic disorders.
She told CNN, “I am not against prenatal/genetic testing for abnormalities but I think we need to stop and think what’s next. … It’s necessary to open the discussion and educate people more about Down syndrome. It’s not a disease or a flaw. Parents of children with Down syndrome … wouldn’t exchange them for anything in the world.”
Ella was inspired to do the series by Halldora Jonsdottir, a 30-year old woman with the condition. Jonsdottir penned a newspaper article about living with Down syndrome titled “First and Foremost I Am Halldora,” which is also the title of Ella’s series. Jonsdottir wrote, “I have Down syndrome but FIRST AND FOREMOST I AM Halldora. I do a million things that other people do. My life is meaningful and good because I choose to be positive and see the good things in life. I go to work, attend school and have hobbies.”
She continues, “Who is perfect? Who can say, that we who have Down syndrome are worth less that anyone else? We are all different and would it be so great if we were all alike?”
In a radio interview about the portraits, Ella asked, “Where are we headed? Will people choose not to keep an embryo if they know it has Down syndrome? I had a lovely aunt with Down syndrome, aunt Begga. It is very difficult for me to think about the elimination of Down syndrome and her at the same time.”
The series features 21 people to represent chromosome 21, the location of the mutation causing the condition; and the people range from 9 months to 60 years old. Ella said, “Some are smiling, others giggling, and their hands and feet were placed freely. I wanted to bring out their uniqueness as individual human beings. The clothes they are wearing are all different as well, and that too draws out the fact that by no means are these people all the same, although they share the same syndrome.”
Additionally, Ella mentioned that she used a floral background for the pictures because she wanted each person to “stand out but also underline that all kinds of flowers can grow and flourish together.” She concluded, “My favorite part of this project was how relaxed the atmosphere was. No one was pretending to be anything, the emotions were real and some of the times, there was such genuine happiness.”