Why is there bias against people with Down syndrome?
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Why is there bias against people with Down syndrome?
Chris Kaposy explores the bias against people with Down syndrome making an ethical case for having a baby with Down syndrome.
My son Aaron, aged nine, has Down syndrome. If you look at photos of our family, his disability might not be readily apparent. He wears glasses and likes to pull his baseball cap down low over his forehead, making the characteristic almond shape of his eyes difficult to see. At first glance, Aaron might look like any other nine-year-old – and that seems fitting because much of his life revolves around the activities of a typical boy his age: sports, playing with pets, going to school, and watching cartoons.
As a parent of a child with Down syndrome, I was alarmed when I first heard about the high rates of abortion of fetuses prenatally diagnosed with the condition in the United States. These rates range from 67 percent to 90 percent and above. But after a bit of reflection, this reaction of alarm might not make a lot of sense. Though my wife and I chose to bring Aaron into our family after his prenatal diagnosis, some might think that the opposite choice made by others would not affect Aaron or our family. Why should someone like me care about whether others choose to abort a fetus with Down syndrome? Why should someone like me care about bias against people with Down syndrome? Isn’t it just a personal decision?
Read more: Should I get prenatal genetic testing done?
I haven’t been able to shake my sense of alarm, but now I understand it better. My worry about the choices of other prospective parents is a protective impulse. What are the motivations behind the choice to abort, I wonder? There is reason to believe that bias against people with Down syndrome often influences these choices. And if people are biased against those with Down syndrome, then such attitudes directly threaten my son's well-being. If they are biased against people with Down Syndrome, this also means they have a bias against disabled people as a whole.
Why believe that bias against disabled people is a motivating factor?
For one thing, other possible explanations don’t add up. For instance, having Down syndrome doesn’t negatively affect one’s sense of well-being, a position supported by research. Moreover, I think that most people know about the relationship between Down syndrome and well-being. After all, the happy child with Down syndrome is a common cultural stereotype. So people likely do not choose abortion over concerns about the quality of life of such children.
Similarly, concerns about the negative effects on families of parenting a child with Down syndrome are unfounded. Research shows that such families tend to be as stable and well-functioning as families that include only non-disabled children. Again, many people know such families and know that they flourish. So I doubt that widespread abortion of fetuses with Down syndrome is motivated by worries about family functioning.
Caption: To create more welcoming communities, we would also have to be more welcoming of children with Down syndrome into our own families. Credit: Fiona Yaron-Field. Attribution 4.0 International (CC BY 4.0)
Some have pointed out that in countries such as the US, where there isn’t universal access to healthcare, the prospect of bringing a disabled child into the world would be daunting. This point, of course, makes a lot of sense. In fact, without good health insurance, it would be daunting to bring any child into the world. However, even in the US, many people do have good health insurance. So this concern would not seem to apply to the large group of prospective parents with good healthcare access.
If these motivations do not seem to be at play, some other powerful cause must be responsible for Down syndrome's high rates of selective termination. Bias is a prime candidate. Because Down syndrome is a cognitive disability, people with the condition tend not to manage all activities of daily living on their own. Western cultures value independence, and consequently, people with high levels of dependency are often stigmatized.
According to an ideology that is influential in many countries, people should not expect government handouts, and social programs are a drain on taxpayers. Such beliefs can easily translate into loathing for people who are dependent. This bias against those who are dependent, if it is commonly held, would also tend to influence reproductive decisions. Few are more dependent than disabled children.
There is also evidence that bias against people with cognitive disabilities is widespread and tends to be perceived as acceptable. The Special Olympics organization has led an initiative asking people to refrain from using the slurs ‘retarded’ and ‘retard’ in their speech patterns. These ableist language terms are often used in Hollywood movies and other profitable products of popular culture.
For example, a character in the film Ted (2012), starring Mark Wahlberg, says ‘fucking retarded’ in a joke. The ‘joke’ appears to have incurred no objection from anyone: the film went on to gross $550 million worldwide, and the studio made a sequel.
Bias can be pernicious in many areas of life. To flourish, Aaron requires good special education and healthcare. When he grows up, I would like options for independent housing to be available to him. He also needs friends. Discriminatory attitudes can threaten all of these things. To counter the prevalence of bias, more people should choose to have children with Down syndrome. I wish and hope that our communities become more welcoming of people like Aaron with differences and dependencies. To create more welcoming communities, we would also have to be more welcoming of children with Down syndrome into our own families.
Chris Kaposy
Chris Kaposy is Associate Professor of Bioethics in the Faculty of Medicine at Memorial University, Newfoundland. He is the author of “Choosing Down Syndrome.”
Caption:
Western cultures value independence, and consequently, people with high levels of dependency, like those with Down syndrome, are often stigmatized. | ©Fiona Yaron-Field. Attribution 4.0 International (CC BY 4.0)
