‘Getting older’: Campaign provides representation of adults with Down syndrome

For Sean Hughes, it’s important to talk about people with Down syndrome getting older and how individuals like him can live fulfilling and independent lives.

“Just enjoy life,” said Hughes of Kitchener, Ont., who will be celebrating his 50th birthday this year.

Over the last 40 years, the life expectancy for an individual with Down syndrome has increased. The Canadian Down Syndrome Society says that in 1983 the life expectancy was about 25 years. Today, it’s more than 60 years.

However, there is little media representation for older adults living with Down syndrome and that’s prompted a campaign that aims to break the stereotype that people with the genetic condition don’t live into their senior years.

The campaign from the Canadian Down Syndrome Society, called “Here I Am,” is a photo essay that shows 13 people who have Down syndrome between the ages of 44 and 75. The photos were taken by professional photographer Hilary Gauld, of Waterloo, Ont., who has been capturing the lives of people with Down syndrome for nearly a decade.

“The art is being able to take the energy and personality of who you’re photographing, and relay that in a still image,” said Gauld.

“My hope is that people can feel the lived experiences of these people and to celebrate how far this community has come to grow visibility across all ages but especially for those who are older, and make space for them in the larger community.

“While statistics show that the average life expectancy has increased for people with Down syndrome, the visibility of seniors and elders remains limited.“

Gauld began working with the Canadian Down Syndrome Society in 2022 on a campaign called “Love Means,” which shows people with Down syndrome and what love looks like for them in platonic and romantic forms.

Laura LaChance, executive director of the society, has a 30-year-old son with Down syndrome and found that there was a lot of representation for children, teens and young adults but struggled to see what life could be like for her son when he got older.

“Aging Canadians with Down syndrome and their caregivers should have comprehensive, unbiased information about aging issues, and have access to all of the government support that is available to them,” said LaChance.

“No parent should be left asking, ‘Who will provide care for my child once I’m gone?’ This photo essay raises awareness and challenges the stereotype that people with Down syndrome don’t live long lives.”

The society says that for the first time people with Down syndrome may start outliving their parents and primary caregivers.

Hughes lives in an apartment complex that offers a supported independent living program. One of his three sisters, Mary Beth Houston, said he has been working at a store packing groceries for 10 years and participates in various workshops and volunteer programs.

“We’ve talked about how getting older doesn’t mean that things stop,” said Houston. “He’s still a busy guy and he really enjoys the social aspect of being busy.”

Hughes is also preparing to swim competitively in the Ontario Special Olympics next year.

Hughes worked with Gauld on another project that features people with Down syndrome who have jobs outside of sheltered workshops.

“She is a very good talent,” said Hughes. “A very caring person.”

Earlier this year, the society started a program with LinkedIn called Inployable, which helps connect employers to people with Down syndrome.

“Although many people with Down syndrome have demonstrated abilities and aspirations to engage in meaningful work in the community, a large percentage of the Canadian population with Down syndrome remains unemployed, are underemployed, or may not be working to their full potential,” said LaChance.

“This initiative addresses that disparity. People with Down syndrome have a right to be employed in the community, where they can work alongside people of all abilities and earn competitive compensation.”

Gauld said there are misconceptions that people with Down syndrome can’t work, have meaningful paid employment and be valuable employees to companies

Houston said she and her brother talk about how people underestimate his capabilities.

“He’s tremendously capable. He can really step into any task and be very successful,” she said.

Houston added that it’s important for people with Down syndrome to have exposure within their community.

“That community involvement really has been a great part of his success and his ongoing development,” said Houston. “He’s still learning things every day, and I think that’s going to keep him young for a very long time.”

This report by The Canadian Press was first published April 1, 2023.

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This story was produced with the financial assistance of the Meta and Canadian Press News Fellowship.

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