Down syndrome continues to be the most common chromosomal disorder — and it is also the least-funded major genetic condition by the National Institutes of Health.
The disorder affects one out of every 700 babies born, for a total of 6,000 individuals each year. According to the Canadian Down Syndrome Society, Down syndrome births in the U.S. have fallen 30 percent below projections as a result of genetic screening. Official estimates of the number can be difficult, as there has never been a coordinated tracking of births and deaths of those with Down syndrome; however, the previous estimate was recently revised from 400,000 to approximately 250,000, as of 2008.
The fewer the individuals with Down syndrome, the fewer to advocate for the community’s interests. Recent advocacy efforts emphasize allowing members of the community to speak to their specific needs on their own, serving as their own best advocate. Members of a disabled community shouldn’t need the efforts of the able-bodied population to receive recognition and assistance.
How do you raise awareness for a cause when your most important representatives are disappearing?
Why can’t people be endangered?
Lions, tigers and bears…oh my! Maybe even a rhino.
The brainchild of another Canadian Down Syndrome Society (CDSS) and an FCB Toronto venture, “Endangered Syndrome” depicts members of the Down community outfitted in endangered species garb via a series of online videos and print advertisements. The group is applying to be the first people on the International Union for Conservation of Nature (IUCN)'s Red List of Threatened Species. The campaign hopes to raise awareness of the need for support for housing, employment and education — and the overall decline in support for this community.
This comparison begs the attention-grabbing question: Does society treat animals better than its people?
In an effort to leverage the global Endangered Species List more than just symbolically, the main call-to-action of the campaign urges the public to sign a tangible, online petition for the inclusion of Down syndrome individuals on the global registry. According to the standards set by IUCN, the Down syndrome community qualifies as a threatened species in many parts of the world.
Biserki Livaja, the mother of one of the video’s actors, Dylan Harman, says: “People do get behind endangered species, and sometimes people get behind those sorts of issues more than issues that deal with other people.”
All efforts coincide with World Down Syndrome Day (March 21, 2019), the same day on which CDSS will physically present its case to the United Nations. Even if this proposition fails — again, no human group or community has ever been placed on the list — the hope is that this campaign sparks a much-needed conversation about future funding.
What they said:
“It may seem to be a dramatic way of getting our point across [regarding the endangered species theme],” agency co-creative Jeff Hilts concedes. “But the fact is, we need a dramatic shift in awareness and attitudes for the public to understand the seriousness of funding shortfalls if we are to provide a meaningful and inclusive life for the Down syndrome community.”
Lessons to be learned:
Don’t always rinse and repeat. — This isn’t the first tag-team effort by CDSS and FCB aimed at creating a powerful, award-winning campaign designed to foster empathy and understanding about the Down syndrome community. In 2016, young people with the condition answered commonly asked Google questions about their everyday lives. In 2017, the world was informed that “sorry” is the one word you should never say to parents of kids born with a development disorder. It would have been easy for either organization to follow these same templates; however, they choose to move the needle with something totally new — keenly, recasting some of the same talent that we previously celebrated. Several of the stars of the campaign are returning for their third consecutive CDSS campaign.
Start a movement. — FCB could have stopped at just the commercials because the connection between endangered animals and the Down syndrome community was clearly articulated, but knowing that a series of :30 ads would be hard-pressed to start a movement, the agency decided to start one of its own. While the audacity to actually present the petition to the UN as a legitimate case speaks volumes about the importance of the issue at hand, the notion of not being afraid to fail for something you believe in is invaluable.
Stretch dollars further. — Nonprofits are synonymous with shoestring budgets. FCB overcame this hurdle by turning to Etsy for its costuming. After finding a seller that created incredible downloadable PDFs of DIY printable masks, a talented and patient designer modified everything to be the perfect complement to the body pieces.
Raise awareness for reality. — Attitudes around disabilities are changing. Individual and group advocacy efforts are changing the public perception from one of disadvantage and inability to one of strength and admiration. Advertising campaigns, such as recent ones from Nike and Tommy Hilfiger, emphasize the normalcy and ability of individuals with disabilities; however, these efforts can detract from the support that is still necessary to assist these individuals with their needs. Children with Down syndrome maintain a higher risk for a number of health complications, such as an assortment of diseases, as well as congenital heart defects.