world down syndrome day 2025: cdss calls on canadian government for inclusive support systems
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by capturing how the right support changes the lives of those living with down syndrome, photographer hilary gauld, not pictured, hopes to squash misconceptions and enact change.
hilary gauld
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people living with down syndrome require a certain level of support to ensure they have all the tools they need to thrive in life. from childhood to adulthood, the assistance required morphs and changes, but the same bottom line remains—when people living with down syndrome have access to resources and support, they can live full lives just like anyone else.
however, with recent services and diversity, equity, and inclusive initiatives on the government chopping block, those essential supports are being threatened. the canadian down syndrome society (cdss) has now launched a national initiative known as it was never okay: forward not backward, urging canadians both within and outside of the down syndrome community to take action against these cutbacks.
when resources are dwindled, it could significantly hinder a person living with down syndrome from reaching their full potential. they’re calling on people to sign a petition that can be put forth in front of lawmakers and asking people to educate themselves to get rid of preconceived misconceptions about people with down syndrome.
laura lachance, the executive director of cdss, is aware of the uncertainty plaguing people with disabilities, and wants to highlight the challenges faced by a lack of support so that lawmakers and the general public can see just how important these services are.
“we will be asking all parties during the upcoming election to be very clear and to make a commitment not to work backwards or not to ignore the disability community as part of their platform,” she said.
hilary gauld, a photographer who has worked in the down syndrome community for over a decade, notes that people need to widen their lenses when looking at supports for the down syndrome community, because it’s not easy to see what is needed when you’re on the outside looking in.
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“our communities don’t either accurately reflect people with disabilities or include them in a lot of the conversations or just include them in very basic things like education, housing, work, and all of those kinds of things,” she said.
the lack of inclusion and the cuts being made only strengthen barriers faced by people living with down syndrome.
the challenges faced by people living with down syndrome
when it comes to leading fulfilling lives, people with down syndrome are fully capable—as long as they have adequate well of resources off the hop. for example, some of the supports in the classroom have decreased, which negatively affects the learning experience of people living with down syndrome. when those supports are not there, it paves a path toward the rest of their lives that is riddled with obstacles.
lachance notes that the backwards movements going on from lawmakers can change the course of a person’s life when they have down syndrome.
“it’s really hard for an individual with down syndrome to take part in the community if they’ve been separated or segregated from the community through their childhood, and particularly in school,” she said.
people living with down syndrome also have to contend with inadequate health resources because there is limited research and training for specialized care in that space. because of that, the quality of their care is significantly lower than that of someone who doesn’t have down syndrome.
medical providers may also make decisions regarding care with a person’s loved one instead of themselves, even if they are adults, lachance notes.
employment can also be a stark issue for people living with down syndrome, not because they are not capable of having meaningful work but because benefits given to them are often stripped away if they try to get gainful employment, creating unnecessary financial burdens and stress.
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housing and recreation are also two notable aspects of life that are made more complicated than they need to be for people with down syndrome because of a lack of resources and support, as well as an understanding of what it really means to have down syndrome. those who have down syndrome can live independently in many cases, and they can also participate in community sports or events, but because of preconceived notions of the condition, people in positions of power are less likely to understand.
being integrated into the community from an early age in the classroom and then continuing to provide support and giving people with down syndrome resources to seek out proper healthcare, employment, housing, and community involvement opportunities is imperative to their overall lives. it’s what everyone, regardless of their disability status, deserves and needs.
“that’s when you see, not just adults with down syndrome thrive, but just all people in general thrive when they are integrated in their communities from start to finish,” said gauld.
the goals of the initiative
the initiative is a call to action designed to make real changes to prevent cutbacks in the support required for people with down syndrome. however, that’s not all that lachance, gauld, and others in the community aim to accomplish. it’s also about changing the minds of those who see people with down syndrome as incapable of living full lives when that’s simply not the truth.
“it’s about resolving the issue. it’s about making sure that if these things are an issue, how do we address them?” said lachance. “how can they be supported? how do they have importance as canadians? what is the fabric of how canadians embrace diversity within their communities?”
the petition is accompanied by strong images designed to provide people with a better understanding of what it can look like when someone receives support versus when they don’t. these images, shot by gauld, paint the picture of what thriving actually looks like when living with down syndrome—and what can happen when people do not have the proper resources in place.
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she notes that the power of photographs can have an intrinsic ability to shift perceptions and, in doing so, spread more compassion and awareness by creating new advocates who can fight for the protection of support and resources for people with down syndrome.
“representation and including people has always been very important, and i think there’s still work to be done within this group and this space,” gauld said. “if i’m able to contribute to that in some way through story and attention and creating conversation around this, my belief is that things do shift and change, and it does have a positive impact on moving this community forward.”
if you’d like to support those in the down syndrome community, you can sign the petition here.
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