The Changing Face of Parkinson's
Written by Brigid Elsken Galloway
Photography by Anders Leines
Stark white backdrops draw attention to faces filled with intensity. Looking into their eyes, you seem to see hopes and dreams, pain and disappointments. You can also see the desire to live well and a sense of defiance toward the disease that was not a part of their plans.
Norwegian photographer and videographer Anders Leines created these portraits to help change the stereotype of Parkinson’s, a disease that affects more than 10 million people worldwide including him. While working on location, his symptoms began without warning. “One day, my energy left me,” Leines says. “It felt like my cells were trembling inside. My wife noticed my right arm wasn’t swinging.” He was diagnosed with Parkinson’s in 2010 at age 47.
After his diagnosis, Leines researched his disease, trying to find the best path of treatment. He continued to work as an editor, cameraman and producer for a broadcasting company. In his free time, he began producing films about Parkinson’s. Four years ago, he hatched the idea to create a photo exhibit featuring people with PD, and it’s been a rewarding pursuit.
“When people think of Parkinson’s, they think of old people with inexpressive faces,” Leines says. “I wanted to change that perception. People with PD are normal people who have lives ahead of them. They still have hope for a good treatment.”
All About Attitude
The Norwegian Parkinson Society helped spread the word about the photography project. Seventeen men and women with Parkinson’s showed up for the three-day photo shoot. They were not professional models. The only criteria were that they be people with PD and under the age of 50. (One exception was made when an elaborately tattooed 56-year-old man volunteered. “Eivind was just too good-looking to be excluded,” says Leines.)
No stylists or makeup artists were used on the shoot. Leines wanted to capture each subject’s natural beauty and character. “I asked them to think proud thoughts about themselves, to hold their heads up high,” he says. “I was most concerned about them having attitude. That’s not something you can magically create.”
In 2015, the exhibit began touring across Norway in cooperation with the Norwegian Parkinson Society, the Norwegian Directorate for Children, Youth and Family Affairs, and the World Parkinson Coalition. The traveling exhibition has since wowed audiences in London, Phoenix and Grand Rapids, with its compelling portraits, real-life stories and critical approach toward the general status quo image of the person with PD. In September, the evocative exhibit will be featured at the 4th World Parkinson Congress in Portland, Ore. Leines’ images can be seen on the WPC 2016 website in a promotional video.
His powerful photography has already helped shift perceptions. The Norwegian Parkinson Society uses the images in its lobbying efforts. “I think the photos have influenced the decision makers more than I expected,” Leines says. “The photos allow them to bring the patients wherever they go and speak to their hearts.”
Originally printed in MoreThanMotion, Fall 2016.