Each March 21 is World Down syndrome Day, as recognized by the UN General Assembly in 2011. As a parent of a kid with DS, every year I take the day as an opportunity to raise the understanding of DS as best I can, even if just a tiny bit. Ok, I say “every year,” but my daughter is only 3 and a half, so it’s not like I’ve been doing this for decades or anything, but anyway.
Why today? Well, 3-21 matches up with the fact that DS is a result of an extra chromosome, i.e a third chromosome, on the 21st chromosome pair. Get it — 3/21? Now, my wife the biologist tells me that’s not the 100% right way to put it, but I’m doing the best I can, and her trying to tell me how to correctly put it is turning into a 20-minute disquisition with a lot of vocabulary that I don’t know and my head is starting to hurt, so that’s as close as I’m going to get right now.
Now, I’ll be honest, I only knew a tiny bit about DS before my daughter came along. Quite simply, it wasn’t in my world — neither personal nor professional. So I’ve learned a lot, and a lot in a way that I might not have otherwise experienced. A lot about DS. About myself. About people. About life and the world around us. And most of it is good. I mean that.
Some of it, however, has been eye-opening. What I’ve come to realize is that, in a way, we’ve become a sort of minority family and so things that weren’t even considerations have become things that matter, in both big and little ways. For example, in the big picture, still today doctors are more likely to choose not to do organ transplants for children with genetic disorders like DS, and have been known to give reason that are both frighteningly honest (kids with DS aren’t “appropriate candidates” for transplants) to false (“There is a higher likelihood of rejection”) as to why that choice is being made. For the record, neither of those reasons — or anything in-between — is medically or ethically correct or appropriate, in and of themselves, but they are used as such.
"We absolutely know this happens. It's a huge problem," said David Magnus, director of the Center for Biomedical Ethics at Stanford University. "It's real people sitting in a room making these tough decisions, and it's not surprising their own prejudices and biases influence them."
It’s gotten better, but there is no doubt there are still some lingering biases that were far more common when doctors around the world, including in these United States, openly embraced eugenics as a reasonable idea.
On a day-to-day level, the most common problem is the use of the word “retarded” as an insult (I’ll be honest, even typing it makes me cringe now). To families of kids with DS and for many others, this is a no-brainer: the word is insulting, and you don’t use it. Period.
For many, however, that’s not how they see things or it’s not something they even think about. Most famously, everyone’s favorite sweetheart, Ann Coulter, has championed and defended the word’s use (starting at around 8:45 of this clip):
Many people take her stance, saying that it is PC bullshit and particularly now, in the era of Trump, we all know how that plays. I have to say, I hate the term “political correctness” as we now know it. It is a benevolent idea that has been twisted into something negative, and it’s a shame. What I would say to Ms. Coulter and anyone else is that it’s not about PC. It’s about respect, plain and simple. Using “retarded” as an insult is using people who have a rare genetic condition as an insult, right? So the clear insinuation is that such people, by virtue of their being born, are insulting. How is that ok?
Now, to be fair, until recently “retarded” was used as the clinical and legal term to describe the syndrome. Over recent years, however, that has changed exactly because the word was co-opted to be an insult. Nevertheless, the stigma and the insulting usage remain.
What has proved most challenging has been when friends, family, my students (college level), or even strangers on the street use it reflexively, without thought, in the course of conversation. It happens a lot. Heck, for a while after Maggie was born it would still pop into my head. It’s hard to blame people, honestly, for it is so ingrained, still today, in our society. And it’s both the educated and uneducated, conservative and liberal, kind and hateful, successful and struggling, and all manner of race, gender and ethnicity that use it. Truly.
For a while, I didn’t know how to react when someone used the word. I knew it was wrong but didn’t want to be the guy who created that awkward situation, and most folks who said it didn’t mean it personally, of course.
Then I remembered a quote by the Rev. Dr. Martin Luther King, Jr. that I have etched in a piece of glass on my desk:
Injustice anywhere is a threat to justice everywhere
and I realized that using “retarded” as an insult, no matter how innocently, was an injustice, period. As almost any person who is a member of, in Supreme Court parlance, a suspect class can tell you, such words are insulting in a very personal way, no matter the intent, and therefore, even if small, are an injustice.
So, first, as a parent, quite simply, I’m going to stand up for my kid. It’s my job, and I love her too much to let her be diminished, to see her and her friends harmed, to see incorrect stereotypes associated with her go unchallenged.
Honestly, however, it is much more than that. It goes to the very core of what discrimination means, something that many people have a hard time understanding, if for no other reason than it’s not something they have ever experienced (including, for a long time, me).
In the case of people with DS and others with disabilities, like so many others, this discrimination is part of their history: forced sterilizations, being locked away, being lobotomized, being deemed unworthy for organ transplants; being murdered alongside Jews and Roma in Nazi concentration camps; and generally being mocked, as the use of the word “retarded” as an insult still indicates today.
It’s also part of what it means to be an American. As the Declaration states, we are all created equal. Despite what is happening in some parts of our nation today, it is one of the core American values that “all,” both de facto and de jure, means “all.”
Ok, so there it is: courage to stand up for what is right through different ideas of justice. But how does that play out in the real world? To be honest, I don’t have a fool proof methodology, but I think I’ve gotten better at it over time. Often, when someone uses the term, I’ll try to do something as seemingly benign as the use itself — a tap on the arm, a quiet retort of “Hey, easy,” or maybe finding that person later and talking it over. Obviously, neither the use nor my admonishment is truly “benign,” but you understand what I mean, I hope.
At the other end, if a person makes a big deal of it, where the use of the insult is bold and brash, then my reaction has been equal. If someone wants to make a big deal out calling someone “retarded,” then I will make a big deal out of calling them out on it. Call it tough love, but such thoughtlessness, such disrespect, such humiliation, must be torn down so that all who heard it know that it will not stand. In any case, I do try, as best I can and as much as needed, to explain why it matters. I don’t always get it right, but I would rather try, make a mistake, and fix that rather than regret letting injustice pass.
We, my family and others who deal with disabilities on a day-to-day basis, are incredibly lucky to be alive today. Both medical science and developmental therapies have come incredibly far in such a short time as to almost stagger the mind. In 1970, the average life span for a child born with DS was in the teens. Now it is over 60. The rate of terminated pregnancies in the case of a prenatal diagnosis of DS, while still too high, is dropping. Quite simply, our society is thankfully, if not slowly, coming to realize that folks with DS are … well ... folks, plain and simple. And the burgeoning list of accomplishments that folks with DS have achieved only reflects that.
So isn’t it time we stopped using them as an insult?
(Epilogue: I recognize you aren’t reading this on 3/21. I at least started writing it on 3/21. That counts for something, right?)