‘Controversial’ and ‘edgy’ are two words that have been used to describe the Canadian Down Syndrome Society’s (CDSS) recent Endangered Syndrome campaign. The campaign announced CDSS’ application to the International Union for the Conservation of Nature (IUCN) requesting that people with Down syndrome be the first humans included on the Red List of Threatened Species.
The campaign launched during Canadian Down Syndrome Week Nov. 1-7, 2018. When a species becomes endangered, conservationists and scientists act to secure protection and resources. “But what happens when an at-risk population is a group of humans with particular characteristics, such as people with Down syndrome?” the campaign’s press release stated.
With prenatal testing more prevalent in many parts of the world, the Down syndrome community is shrinking. According to CBS News, “In Denmark, termination rates for fetuses with Down syndrome stand at 98 percent; the figure in France is 77 percent; and in the U.S., studies suggest about 67 percent. Iceland is the only country to have reached a consensus: from 2007 to 2015 every single pregnant woman in Iceland terminated a fetus with Down syndrome following a positive diagnosis” (Behind the Lens: Iceland’s Down syndrome dilemma, August 11, 2017).
The campaign shared a video series and print ads featuring people with Down syndrome dressed as a polar bear, lion, panda and turtle. Why are they dressed like animals? Because people with Down syndrome are endangered, the ads say, and like endangered animals they need support.
With the decreasing numbers comes fewer support and resources, which the campaign aims to highlight, particularly the need for employment, housing, community services, education and awareness.
According to the campaign’s website, endangeredsyndrome.com, a social media share of the campaign’s message was considered a signature on the petition to the IUCN. The CDSS plans to submit its letter of application for endangered status and its petition to the United Nations on World Down syndrome Day March 21, 2019.
When CDSS’ Facebook page shared posts about the campaign, it created buzz and a wide variety of reactions from the community. Many people were angry at both the idea of comparing humans to animals and for the portrayal of people with Down syndrome dressed up like animals. Others – though a smaller number – voiced support for a “brilliant” and “creative” campaign.
A Change.org petition created by Christina Keogh of Kamloops, B.C., asked the CDSS to stop portraying people with Down syndrome as animals, “and instead focus on finding ways to support and humanize the community.” The petition received 10,694 supporters before it was closed.
On Nov. 13, a campaign update from CDSS board chair Laura LaChance was shared on the society’s website and Facebook page. She noted that the campaign was achieving its goal of raising public awareness and starting a deeper conversation about accessing adequate supports.
“The numbers show us that while most of you support us in our goal, for others the campaign created controversy. While we understand a number of people didn’t like this campaign, it was never our intention to offend anyone,” LaChance stated.
“Our intention is not to compare humans to animals; no one respects or knows better the beauty, strengths and abilities of this community than those of us at CDSS who have children of our own living with Down syndrome. The use of the animal costumes is to provide context only, to highlight the surprising reality that people with Down syndrome do meet the Red List criteria for being considered endangered.”
Ingrid Jackson, an Ontario mother who has a young son with Down syndrome, appreciated the campaign’s message and said anyone who feels it makes people with Down syndrome less than human are missing the point.
|Edward and John Van Sloten|
“It highlights how society cares so deeply for animals that may be going extinct, but really cares less about our kids going extinct – and in fact actually cheer the fact they aim for a ‘Downs- free’ society,” she told Christian Courier.
John Van Sloten is an ordained Christian Reformed pastor, teacher and writer who lives in Calgary. His youngest of three children is 26-year-old Edward, who has Down syndrome. Van Sloten has been on Down syndrome boards for years and has seen clever campaigns from the CDSS.
When he first watched the Endangered Syndrome video, Van Sloten noticed how beautiful and articulate the children featured are. “That was a well produced marketing campaign,” he said.
Van Sloten was quick to note that with Edward being 26, he had a different reaction to the campaign than he would have had when his son was younger.
“I think when Edward was six, I would have reacted differently; when he was six months old, I would have been militant; when he was 16, I still don’t think I would have had this more mature response to the campaign as I’m having right now,” he said.
“Once you get past the subhuman uncomfortableness, I saw it as an enacted hyperbolic marketing parable that illumes the true offense of fetuses around the world being aborted just because of a Down syndrome diagnoses.”
If a utilitarian view of human beings produces categories of desirable and undesirable human specimens then it makes sense for those who seek justice to put people with Down syndrome on the Endangered Species list and defend them the way people defend animals, he said.
“It’s that hyperbolic reinterpretation or reception on our part that took away the offense and made me a supporter,” said Van Sloten, who shared the campaign on his Twitter account. “I think God would get the hyperbole in this.”
When asked about his reaction to prenatal testing leading to fewer babies born with Down syndrome, Van Sloten said he is “horrified for the fact of those human beings not existing.”
Van Sloten said when Edward was first born and diagnosed it was difficult, but now his youngest son is one of the best things in John’s life. “Edward has brought fullness and a sense of authenticity and beauty and truth to life that I am convinced we would not have in our lives were it not for him,” he said.
Christian Courier reached out to CDSS for an interview on the campaign at the end of November, which was declined.