To the many millions across the world who know and love someone with Down syndrome, Iceland’s 100 percent elimination rate for babies diagnosed in-utero with the condition is a tragic statistic. It also brings up a puzzling question: How is it that people so endearing could find themselves so completely rejected as members of the human family?
It took a concerted effort, with government and culture working hard together, to achieve Iceland’s feat — a feat that the rest of the world is approaching. Other countries in Europe show abortion rates for Down syndrome of more than 90 percent. In the U.S., the rate of termination of babies diagnosed with Down’s is 67 percent and rising.
On the government side, expensive genetic tests are included in routine prenatal care — with a clear predisposition to abortion if a disability is detected. This is something Icelandic geneticist Kari Stefansson describes as “heavy-handed genetic counseling.” On the cultural side is a rising inability to imagine that a life burdened with disability can still be filled with the simple everyday satisfactions the “abled” experience. This lack of imagination inspires a fear of the “other” and what seem insurmountable difficulties — resulting in the inability to welcome, include and accept.
Advocates for the life of children with Down’s know that there is a sure cure for this fear of “otherness” — and that is contact with them. Knowing them better fosters a general societal acceptance and inclusion, but also helps expectant mothers and fathers, overwhelmed by a diagnosis and pressured on all sides to abort.
The owners of Bitty and Beau’s Coffee shop in North Carolina have made establishing this contact their life’s work. Proud parents of two children with the syndrome, they run a coffee shop that employs 40 people with intellectual disabilities. They call themselves “advocates for the value, inclusion and acceptance of people with intellectual and developmental disabilities,” and hope to help make this world a more welcoming place for them.
To have a cup of coffee at Bitty and Beau’s is truly to enlarge the soul. Even a visit to their website will have that effect.
Other advocates are working hard on YouTube, with videos that capture the way that children and adults with the syndrome are manifestly members of the human family. One video shows the infectious joy of boys and girls, and men and women with Down’s, dancing exuberantly to Pharrell William’s “I’m Happy.”
Another ad is aimed at women who have been told their child is affected, with lovely young people with the syndrome telling them not to be afraid. Your child, they say, will be able to run toward you and hug you, go to school and write to you when far away. When she is grown she will be able to work and, proudly, invite you out to dinner. Yes, sometimes it will be difficult, but isn’t it like this for all mothers? A pretty little girl exclaims, “Your child can be happy. Like I am! And you can be happy too.” It ends with images of doting mothers, their faces illuminated with joy and pride.
The coffee shop, the videos and the ads are remarkably effective, because they ask us to consider what we are giving up in our search for the perfect society, filled with only “perfect” people (as if such persons existed).
It turns out we are giving up some really wonderful men and women who may be intellectually disabled, but are superabled in their ability to connect and engage — and in their sturdy relish of life. The world is a better place, a much better place, with them in it. And so are we better. Interaction with them develops our noblest human impulses — like respect and acceptance of others — and our ability to love despite challenges and fears.