The current Down syndrome generation is going to be the first one to outlive their parents. For most, this means outliving their primary support system.

To better understand this audience and when we could connect with them, we mapped their journey, finding moments when our audience needs information and support, from early pregnancy through adulthood. Moments our campaigns could own.

Our campaigns have evolved from awareness and advocacy to giving people with Down syndrome agency, inclusion, and utility - all at once. Offering life-changing independence to a marginalized and oft-forgotten community.

The Canadian Down Syndrome Society (CDSS) had a goal of raising awareness of the abilities of their community, on a minuscule budget. But there were two issues:

Issue #1: Too Broad. With a small budget, the CDSS didn’t have the resources to breakthrough to a mass audience. We needed to hone our efforts in two ways: we focused our efforts on people with Down syndrome and their parents, not the general public, and used our strategic process to map a journey of key own-able moments.

Issue #2: Too Expected. The desired creative approach was generic, and frequently employed by disability advocacy groups, “see the ability”. But we knew that simply saying it doesn’t make people believe it.

CDSS is “pro-information”, combatting the stereotypes and stigma of Down syndrome. To fulfill their mission, we set out to demonstrate people with Down syndrome’s humanity instead of merely talking about it.

CDSS’s mission is to improve the lives of people in the community across a range of different issues. To have the greatest impact on the community, we focused our efforts on people with Down syndrome and their parents, not the general public. To better understand that audience and the moments when we could connect with them, we mapped their journey. We defined the journey based on moments when our audience needs information and support, beginning at early pregnancy, and continuing through into adulthood. Moments our campaign could own.

At every stage of the journey, parents and individuals with Down syndrome have to fight against misinformation and stereotypes about Down syndrome. To support them, we went beyond just saying what people with Down syndrome can do, and instead demonstrated it. We decided to let people with Down syndrome speak for themselves.

Our customer journey revealed key moments when support was essential:

Year 1: Diagnosis to decision

Expectant parents have 10 days to decide whether to keep their baby. Search data showed that 0.1% of pregnant couples ask Google 57,000 Down syndrome-related questions monthly.

Year 2: Birth Announcements

Qualitative interviews showed parents of Down syndrome children hear “I’m sorry” after their baby’s birth, turning a moment of celebration into pain.

Year 3: Raising children in a shrinking community

Analyzing Down syndrome birth statistics revealed an increase in pre-natal screening for Down syndrome, with near universal termination rates2, 3, 4

Year 4: Making voice technology accessible

Google’s AI didn’t understand one in three words spoken by a person with Down syndrome, making the technology unusable for the community.

Year 5: Proving the link between fitness and cognition

Anecdotally, fitness can improve cognition for people with Down syndrome. We set out to prove it.

Our creative platform demonstrated what people with Down syndrome can do. A humanizing approach employed throughout the journey.

Year 1: Have the true experts answer parent’s questions

Down Syndrome Answers - a series of searchable videos where people with Down syndrome answer the 40 top Googled questions on Down syndrome.

Year 2: Make Sorry a Bad Word

Our Down syndrome experts once again explained that any profanity-laden reaction is better than the worst word of all: “Sorry”.

Year 3: Position a community as endangered

To advocate for resources, for the first time in history, a group of people applied to be on the endangered species list.

Year 4: Becoming Google’s teachers

The Down syndrome community became Google’s teachers, changing voice technology for all.

Year 5: Leading a global research study

We led a globally unprecedented study to prove the link between exercise and cognition for the Down syndrome community.

Since launch in November 2016, the Canadian Down Syndrome Society’s campaign has:

• Earned 3.3 billion impressions.

• Provided the data to allow Google to launch a new beta of its voice assistant in the Spring of 2021 and in November, extend the project to include all people with atypical speech, to help future-proof a vulnerable community amid the emergence of voice technology.

• Increased donations by 429%, reaching the highest level in CDSS’ history.

• Provided on-going resources for parents as every Down Syndrome Answers video remains in the top 10 in Google rankings, with 65% at #1.

• Recruited 200 eligible participants, from four continents, achieving our goal of becoming the first statistically significant study on exercise and cognition within the Down syndrome community.

• Been presented at the UN twice, with a third campaign mentioned.

In Canada and North America, despite a growing movement towards diversity and inclusion, bias continues to be pervasive against people with disabilities. Stigma and stereotypes impact parents and people with Down syndrome at every stage of their lives – from a lack of fair and balanced information at the moment of diagnosis to difficulty accessing resources to find their first job and move out on their own to being ignored in the voice technology revolution. While Canada has made great strides in building an inclusive society that accepts people of different races, genders, and sexual orientations, we are way behind when it comes to accepting people with disabilities.

Because of this, the CDSS had the goal of supporting parents of children with Down syndrome at every stage of their lives. To fill the gaps of support, information, and resources that parents don’t receive.