Ch. 4, Part 7: Down syndrome & behavior (or, “I’m no Angel.”)

The penultimate section of Chapter 4‘s exploration of “Down syndrome” turns to certain behaviors associated with those with the condition. You are welcome to argue in support of my position or against it that, however sweet many people with Down syndrome are, they ain’t no angels.

Like the descriptions of Drs. Down and Lejeune mention, another common characteristic associated with Down syndrome is demeanor. When people learn I have a daughter with Down syndrome, almost universally they will respond with some variation on the following response:

“Oh, I knew a girl/boy/man/neighbor/aunt/cousin who had Down syndrome. They were so sweet and loving.”

As much as some parents wish to push back on this generalization, particularly when their child is being non-compliant or manipulative, I must admit that in my experience, the common impression made by people with Down syndrome is that they are sweet and loving.

Prior to having Juliet, my experience with individuals with Down syndrome was representative of probably most others, that is to say it was limited. With Juliet joining our family, my experience has swung to the other end of the spectrum, which is to say I have met and spent time with hundreds of individuals with Down syndrome.

Through my service on Down Syndrome of Louisville’s Board, attending the National Down Syndrome Congress’s Annual Convention, and, serving on the board of a residential provider for individuals with intellectual disability, hardly two weeks go by when I am not interacting at some level with a person with Down syndrome other than Juliet. Having friends like Brian, who takes photographs at DSL’s events, Amber, a regular attendee at those events, Mark, a remarkable public speaker, Rachel, who lives in Kansas and is an effective lobbyist, and Juliet’s many friends who happen to have Down syndrome—Parker, Carmen, Mitchell, Mary, Ben, Elijah, only to name a few—I have to admit to the generalization that these individuals do have a sweetness about them. And, it’s not just Juliet’s peers, who are adolescents and children and therefore more prone to being sweet than us jaded adults, but it includes those adults I named and more, who hold jobs, live in the community, and lead very active lives.

By “sweetness” I mean a sunnier disposition than most adults I encounter (granted that may be skewed since I’m a practicing lawyer and therefore deal with attorneys more than most). This disposition is also welcoming. There is a couple of guys with Down syndrome who live in our neighborhood that I occasionally see out and about when I’m running errands. Our contact is so sporadic, however, that I’m little more than just some other guy who is buying groceries, like everyone else in the store. But, when I say hello to them, I am greeted with a wave and a smile and they will welcome some chit chat. I cannot say the same of most of the others shopping for their groceries, who as often as not would look at someone they don’t know saying “hi” with some skepticism, wondering what the well-wisher’s agenda is.

Working in a field that requires paranoia and cynicism of opposing counsel, I do find this seemingly natural inclination on the part of those with Down syndrome to choose to be welcoming and happy surprising. Every one of us has been teased, or excluded, and sometimes bullied or threatened. But, for individuals with Down syndrome, these negative interactions with other people, both peers and adults, is something that happens to a greater degree. Plus, there’s a truth in the clichés of the “grumpy old man;” the crotchety neighbor yelling for the kids “to get off my lawn;” the complaining about the “loud noise of modern music;” and the oft-heard sigh with resignation by older people that “life seems to have passed me by.” That truth is that life does pass us by the longer we live it.

I’m just in my 40’s, but reading who won the Grammy’s or the Emmy’s is an exercise that makes me feel dated and out of touch, when just a decade earlier I was still up-to-date with popular culture. Words like “jaded,” “cynical,” and “bitter,” are words not associated usually with kids, but with adults wore down by life’s experiences.

Now, consider that individuals with Down syndrome live in this same life of fast-moving change, impatient clerks, receptionists, people in line, people-in-general, and, due to their intellectual disability, trying to keep up and make sense of all the hurly burly is that much more challenging. For those of us considered of “normal” intelligence, we expect a certain amount of causticness to our personalities that we ascribe to “maturity.” But, individuals with Down syndrome also seem to have a resistance to cynicism, jadedness, causticness.

George Will, the political commentator and father to an adult son with Down syndrome, has written wondering what it says about the human condition that for those of us considered “normal,” it is we who take a jaundiced eye towards this life whereas those with Down syndrome, considered by the rest of us as disabled, instead seem to embrace and enjoy life?

It is for this preternaturally more loving nature that many want to characterize individuals with Down syndrome as otherworldly—literally beings from another world. Typically, this characterization takes a religious bent and they are described as “Angels.” In my hometown, there is a charity called “Angels in Disguise” that features individuals with Down syndrome with wings and halos in its marketing. Pro-life arguments against Down syndrome selective abortions often will liken those with Down syndrome as angels sent from heaven. I expect those who want to think of individuals with Down syndrome as angels mean well. But, I am resistant to such characterization, as are many other parents.

There are parent-advocates who reflexively dispute the “angel” characterization by citing all the evidence to the contrary. Within the Down syndrome community, we joke that “stubbornness” must also be on the 21^st Chromosome, as it is a commonly shared trait. So much so that there is a phrase—”flop and-drop”—to describe the highly embarrassing, seemingly almost always-in-public, physical reaction by children with Down syndrome when they don’t want to do something, where they will literally drop to the ground, flopped over in half due to the “tender languor” of their joints, though, in the moment, parents do not find anything “tender.”

There are also those parents whose kids who happen to be on the bell curve portion of lower-than-average capabilities who are often dually-diagnosed with another condition, or several. The incidence for autism, while increasing amongst the general population, has a higher incidence with those with Down syndrome. Combining intellectual disability with another condition that makes interaction and communication challenging can be a very trying combination. For these parents, they often will say their children, while loved and valued members of their families, are not “angels.”

My resistance to the “angel” designation, however, is not based on whether all children with Down syndrome are sweet and loving or whether some individuals with Down syndrome can, at times, be real pains in the neck (like we all can). Rather, I find the labeling of individuals with Down syndrome as “angels” de-humanizing, something that others who do not mean well all too often do to individuals with Down syndrome.

It’s my preference, instead, that individuals with Down syndrome be embraced and valued first for simply being individual human beings, just as we should treat everyone else. By calling them “angels,” it risks them being seen as something different than us, something that is not like us, and something set apart from us. And, by making them different, set apart, and unlike us, it can lead to thinking it is justified to treat individuals with Down syndrome differently, and not for the better.