Chris Kaposy argues that more people should choose to have children with Down syndrome.
Today (March 21) is World Down Syndrome Day, chosen for the symbolism of the 3/21 date. For those in the Down syndrome community and beyond, it is important to celebrate this day. Though there is much to celebrate, we are currently at a crossroads when it comes to our cultural acceptance of this cognitive disability.
On the one hand, Gerber’s 2018 “Spokesbaby” Lucas Warren has Down syndrome. Lucas is very cute and Gerber has rightfully won plaudits for being progressive and inclusive. On the other hand, a few weeks before Gerber made its announcement, the comedian Tom Segura released a new special on Netflix that uses derogatory language and denigrates people with Down syndrome. Many people apparently find this funny. Netflix obviously considers Segura’s material appropriate for broadcast, even though similar derogatory language directed at racial groups, religions, or sexual minorities would probably end Segura’s career.
Though we recognize the need for inclusion and normalization of people with Down syndrome, many of us also refuse to include children with this condition in our own families. It is common for prospective parents to opt for termination when they find out that the fetus has Down syndrome. Termination rates in such circumstances range between 60% and 90%.
At the moment, the status of people with Down syndrome in our communities is confusing. We have made great strides in life expectancy, living standards, and public education for people with cognitive disabilities. Children with Down syndrome are no longer sent away from their families to live in horrific institutions. Many of these advances resulted from the recognition of the rights of people with disabilities in the public sphere, supported by hard-fought litigation, and legislative victories, many of which are now decades old, and never entirely secure. But inclusion in the private lives of others is also important for well-being, and is often beyond the reach of the law.
The intimate spheres of life form the current horizon for the inclusion of people with Down syndrome. When children with Down syndrome are included in their families they tend to become beloved full participants. But, as the selective termination rates indicate, there is still enormous reluctance for prospective parents to choose to include children with Down syndrome in their families in the first place. The biotech industry is enabling the ability to control admission into our families through the ongoing development of more accurate and user-friendly products for diagnosing genetic differences in utero. These products are highly profitable, so they must be tapping into a widespread desire to avoid the birth of such children. You might think that Lucas Warren is cute, but if given the choice, would you choose to bring a baby like Lucas into your life?
People with Down syndrome are often denied admission into intimate spheres. For instance, older children and adults with cognitive disabilities, including Down syndrome, are often terribly lonely. At eight years old, my son Aaron has Down syndrome. Aaron has many friends – some who have Down syndrome, and some who don’t. But my wife and I have heard from other parents like us that nondisabled friends often drift away when their children get older. Networks of children with Down syndrome are a way to maintain friendships, but inclusion should also mean involvement in the nondisabled world. You might think that Lucas or Aaron are cute, but would you befriend someone with Down syndrome who is your own age? True inclusion means involvement in the more intimate areas of our lives, such as relationships between friends.
I address these issues of prenatal testing, selective termination, and inclusion in a newly published book Choosing Down Syndrome: Ethics and New Prenatal Testing Technologies. In the book I argue that although people with Down syndrome have difficulty entering the intimate areas of our lives, a legal ban of selective termination is not the solution. Legislation could never be sufficient for full inclusion in private areas of life. No law ever mandated friendship, for instance. Further, such abortion restrictions appear to be an indefensible effort to chip away at abortion rights.
Rather than legislative action, we need cultural change. It would be a positive development if more people choose to bring children with Down syndrome into their families, in spite of the availability of prenatal tests that enable them to choose otherwise. Derogatory language directed at people with cognitive disabilities must disappear from our discourse. Inclusion doesn’t just mean legal rights. On World Down Syndrome Day, we should think about how we can move beyond our cultural ambivalence about Down syndrome.
Chris Kaposy is an Associate Professor of Bioethics at Memorial University. @ChrisKaposy
Choosing Down Syndrome: Ethics and New Prenatal Testing Technologies (MIT Press) is available at a discount of 30% until 5/1/2018 if ordered through the publisher’s website, using the code “MKAPOSY30”.