Just As I Am: Exploring Life with Down Syndrome
Amy Allison, Vice President of Education and Advocacy for the Down Syndrome Guild of Greater Kansas City, said she often starts a conversation about her work by asking people to identify a person they know who lives with Down syndrome. Many, she said, can’t. Their understanding of Down syndrome instead comes from, perhaps, seeing someone at the grocery store or seeing a video on social media. These types of isolated encounters fail to expose people to the full complexity of Down syndrome and the people who live with it—and Allison said the Just As I Am Gallery, which will be coming to Johnson County in March 2021, aims to change that.
Just As I Am is a combination of portraits, short films, and written stories from people of all ages who have Down syndrome, along with, as appropriate, their families and caregivers. The exhibit asks viewers to see people with Down syndrome as they are—challenging stereotypes and preconceptions and asking viewers to engage with individuals and their stories rather than preexisting categories.
The work in the exhibit was created as part of the 7 Billion Ones project, which uses photography, narrative, and video to tell stories of people from all over the world, but photographer Randy Bacon said there was something different about this portion of his work.
“There is a light about the project Just As I Am that I never experienced before with any of my work,” he said. As part of 7 Billion Ones, Bacon has photographed many different people, which, for him, is a very in-depth process that involves getting to know something and tapping into their stories.
“Everybody has a story,” he said. “People kind of throw that word around, but for me it is more about part of the essence of that human and then compiling it and combining it with the authentic portrait of an individual, there’s an exponential power to it.”
From survivors of domestic abuse to suicide and cancer survivors, Bacon said he’s gotten to hear amazing stories from incredibly wise people. But there was something different about this exhibit.
“But above them all is pretty much every single person I’ve photographed for Just As I Am,” he said.
He said that photographing and talking with the participants caused him to rethink his own misconceptions about people with Down syndrome—especially the common attitude of feeling sorry for people with Down syndrome.
“We should feel sorry for ourselves, because they have a clarity about things that I’ve never seen with anybody I’ve ever photographed before,” he said.
The exhibit combines large (36×36) portraits with written narratives and videos of each of the seventeen participants telling their own stories.
Bacon said the combination of techniques was intentional. “I think there’s a power in motion portraiture and there’s a power in still portraiture,” he said.
Allison explained that, while many stories of people with Down syndrome focus on something others did for them in a performative, often patronizing way, the stories in Just As I Am center participants’ voices. In that regard, Bacon’s approach to his work meshed well with the goals of the Down Syndrome Guild of Greater Kansas City for the exhibit.
Bacon said his artistic approach has shifted over the years—away from a perfect-picture approach and toward what he describes as authenticity.
“That means if my hair is messed up, my hair is messed up. If my skin is not perfect, my skin is not perfect. If I cry, I cry. If I laugh, I laugh,” he explained. He said that as he’s sought to photography the myriad unique experiences that make up the lives of 7.5 billion people on the planet, he’s returned to the idea that no one should have to be perfect to be seen as a miracle.
His approach to this exhibit—along with his other work—focuses on getting people to notice the miracle he said is all there, in every person’s face and story.
“I just want to shake people a little bit so they slow down, they study the individual, they look at the individual—there’s almost a magic connection between the photo and the person,” he said.
Bacon said he entered portraits from Just As I Am into an international portrait competition—a contest he said historically values portraits that focus on more classic, technically “perfect” models of what good portraiture looks like, which is different from his approach.
“Most photographers…think more that ‘I’ve got to create a cool image’ or ‘I have to make this person beautiful.’ Whereas I want to show how beautiful this person is just as they are,” he explained.
Just As I Am portraits took first place as well as first and second runner up in the contest. Bacon said he believes outcomes like that indicate that we’re starting to shift away from an Instagramable, perfect picture model of what our lives should look like.
“I feel a little bit better about humanity, because people are cutting through and coming to a closer connection with what’s important and what’s not,” he said.
As the pandemic unfolds, Bacon said he feels we need exhibits like Just As I Am, that remind us to slow down and choose to see people in their complexity and beauty, more than ever—and he said there’s something unique about seeing an exhibit like this in person.
“Nothing compares to the face to face experience of seeing the actual photographs, reading the actual stories right next to the portrait,” he said. For this exhibit in particular, he said the experience of seeing portraits that are literally larger than life is unique to the physical gallery. The exhibit will run during the month of March 2021, including over World Down Syndrome Day on March 21. You can learn more about the exhibit from the Down Syndrome Guild of Greater Kansas City.