'Here I Am' Photo Essay Shows Adults Aging With Down Syndrome

Lack of representation spurred the Canadian Down Syndrome Society into action

The life expectancy of Canadians with Down syndrome has more than doubled over the last 40 years. Yet there's minimal imagery of older people with the genetic condition in the media. This leads to misinformation, and the notion that Down folks don't live past 40—when, in fact, they often do.

So, the Canadian Down Syndrome Society and photographer Hilary Gauld created "Here I am," a moving, at times joyous birthday-themed photo series that features seniors and adults with Down syndrome. We learn small details about their lives that really resonate. For example, Gus celebrates his birthday twice a year—once with family and once with friends (plus two chocolate cakes!)

Click images to enlarge:

The work is tied to World Down Syndrome Day.

We spoke with Laura LaChance, executive director of Canadian Down Syndrome Society and photographer Hilary Gauld about the project.

What was the campaign brief?

Hilary Gauld: After photographing Canadians with Down syndrome for almost a decade, I felt it would be a valuable project to explore aging and Down syndrome and to challenge the misconception that people with Down syndrome don't live into old age. They very much do and where they go and live changes as they get older. Their caregivers come front and center as the life expectancy of those with Down syndrome continues to grow.

Talk about the process.

Gauld: We had 13 participants from 44- to 75-years-old. I learned a lot from this experience. I watched how challenging but rewarding it is for the families to care for their aging siblings and children with Down syndrome. The love and support that surrounds the people in this series was beautiful. Most importantly, I learned about their lived experiences. Their lives are full of family and friends. Medals earned in the Special Olympics. Travel. Work.

Why was a photo essay the best format?

Laura LaChance: If you Google Down syndrome and then click "images" you'll see that the majority of the pictures are of babies and young people with Down syndrome. The focus of images included prenatal, perinatal, baby, toddler, school-age children images. Now we see more focus on relationships, employment and older age.

What's the ultimate goal?

LaChance: This is a wonderful growth and creates visual images and goals for families as their loved one ages. This new project aims to eliminate the stereotype that people with Down syndrome don't live long lives.

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