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aging with down syndrome: 'here i am' campaign aims to dispel misconception of shorter life expectancies

noticing a lack of representation of older people living with down syndrome, waterloo, ont. photographer hilary gauld created a photo essay together with the canadian down syndrome society to tell the life stories of adults and seniors.

by karen hawthorne

published mar 17, 2023

5 minute read

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5 minute read

join the conversation

the oldest person living with down syndrome is thought to be 75

craig, 59, who lives with down syndrome, was part of photographer hilary gauld's photo essay spotlighting adults and seniors. credit: oneforthewall.ca

adults and seniors with down syndrome — also named trisomy 21 for the irregular chromosome that can cause various intellectual and physical challenges — aren’t always seen in awareness and advocacy projects. but a photo essay campaign in partnership with the canadian down syndrome society (cdss) seeks to change that. putting older people living with down syndrome in the limelight alongside photos of their childhood selves, the campaign raises awareness of the advances in medical diagnostics and treatment that have more than doubled lifespan from 25 years in 1983, to more than 60 years today.

“our parents told us that brigitte wouldn’t live past seven and now she is 75. she is thought to be one of the oldest living persons in canada with down syndrome,” says marianna, sister and caregiver of brigitte, one of 13 participants in the campaign, called here i am, which launches on march 17 to celebrate world down syndrome day on march 21.

along with the increased longevity, though, people with down syndrome are at a higher risk as they age for certain health conditions that require extra care, like alzheimer’s disease. cdss advocates for adequate information, health services and support.

healthing spoke with campaign photographer hilary gauld, the creator of one for the wall in waterloo, ont. she has photographed people living with down syndrome and their caregivers for almost a decade, inspired to get involved by a friend who has a son with down syndrome. she says he’s nine-years-old now and doing well.

why is this project so important?

gauld: there is a lack of representation in the older age group. and even for me, the vast majority of my sessions and my focus has been with the children and young adult age bracket. but after 40, where do these people go? so i thought what a great community to explore and understand where they are in our community.

allan is from port dover, ontario. his favourite way to celebrate his birthday is to go to the mandarin restaurant. credit: oneforthewall.ca

and it was an easy project to recruit for. the energy and enthusiasm was strong. the caregivers are also aging as well, so there had to be a lot of correspondence and organizing of people’s schedules and time to meet for these photo shoots. typically, people would come to my studio. this was definitely different and much more challenging in organizing because these sessions would happen in their homes or a group home. a couple happened in my studio that were local people who had caregivers to drive them, but the majority of them were done within their home.

tell us about the experience of working with these adults and their caregivers. what made it unique?

g.: one or two things stand out. some of the participants are non-verbal. so for me, it meant connecting to their energy in a very different way to see their personality, to see their soul. music became a really important piece at all these shoots. it’s a very important way to connect with people, and it was everything from country to gospel to rock and musical theatre. the eye contact, the smiles, and showing them their photo in the back of the camera always got a really big smile, and usually some clapping.

it was simply a beautiful experience to meet these people and their caregivers as well. two of our subjects live with their moms who are both 90-years-old. to listen to their lived experiences, the things that they had done in their life, their hobbies, their connections in their community. and to see the breadth of their life and the impact they had, not only on their families, but their communities, too, was just a really beautiful experience.

“our parents told us that brigitte wouldn’t live past seven and now she is 75. she is thought to be one of the oldest living persons in canada with down syndrome,” says marianna, sister and caregiver of brigitte.

did the caregivers play a role in the photo shoots?

g.: the project is obviously centred around the voices and faces of these senior adults. but behind the scenes, these photo sessions would not have been possible without the caregivers. it was quite incredible to see the families of these adults. some of the participants still live with their moms, and then a lot of them are living with siblings, and then a couple of them were living in group homes. but the one overriding feeling i got from all the caregivers was the sense of incredible love for the people in their lives, making sure they are cared for and that they’re doing the things that they love, and getting to activities — that kind of thing. and also making sure that as they age, they are staying connected in communities.

any memories you’d like to share about the project?

g.: myron’s mom, elsie, is 90 and myron lives with her, and she said that she is starting to talk to myron about her own aging and the fact that she will die someday and she won’t be there, because myron is quite attached to her. but myron just keeps telling her, ‘well, that’s when i’m going to take over your bedroom!’

what else was fun in the series is that we asked everyone how they celebrate their birthdays. chocolate cake definitely was the number 1 food. we have some really great answers, and with a few of the participants, their families really felt that they may not see themselves aging, but they certainly recognize it in those around them. they feel that everyone else is getting old, but they are not. so that was interesting, too.

what do you hope people take away from the campaign?

g.: the aim is that we take away the misconception that adults with down syndrome have shorter life expectancies. statistics are showing that the average life expectancy has increased quite significantly over the last 50 years. but despite that, the visibility of seniors remains quite limited. the hope is to show our communities that canadians with down syndrome are living longer, showing them what that looks like, sharing their lived experiences through these photos. and as a portrait photographer, i believe that a single portrait of somebody’s face can really tell a story about who they are and their energy, so you can know them as a person.

karen hawthorne is a toronto-based writer.

the here i am campaign launches on march 17. check out hilary gauld’s collection of photos spotlighting living well with down syndrome at oneforthewall.ca.

for more information on down syndrome, support and to connect with others, visit the canadian down syndrome society.

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karen hawthorne

karen hawthorne worked for six years as a digital editor for the national post, contributing articles on health, business, culture and travel for affiliated newspapers across canada. she now writes from her home office in toronto and takes breaks to bounce with her son on the backyard trampoline and walk bingo, her bull terrier.

aging with down syndrome: 'here i am' campaign aims to dispel misconception of shorter life expectancies

noticing a lack of representation of older people living with down syndrome, waterloo, ont. photographer hilary gauld created a photo essay together with the canadian down syndrome society to tell the life stories of adults and seniors.

down syndrome, trisomy 21: signs, causes and treatment

down syndrome 'doesn't define talent'

why is this project so important?

tell us about the experience of working with these adults and their caregivers. what made it unique?

did the caregivers play a role in the photo shoots?

any memories you’d like to share about the project?

what do you hope people take away from the campaign?

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aging with down syndrome: 'here i am' campaign aims to dispel misconception of shorter life expectancies

noticing a lack of representation of older people living with down syndrome, waterloo, ont. photographer hilary gauld created a photo essay together with the canadian down syndrome society to tell the life stories of adults and seniors.

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why is this project so important?

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tell us about the experience of working with these adults and their caregivers. what made it unique?

did the caregivers play a role in the photo shoots?

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any memories you’d like to share about the project?

what do you hope people take away from the campaign?

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