There’s an old saying: “People plan; God laughs.” Or, to paraphrase Robert Burns, the best laid schemes of mice and men often go askew. Or, as John Lennon popularized the same sentiment, “Life is what happens while you’re busy making other plans.”
Having a kid with Down syndrome wasn’t in my plans. I suppose it isn’t in anyone’s plans, except for those saints who adopt such children. My wife and I were always high-achievement people. I had recently finished a PhD with honors and she was a marathon runner who had stepped down from a well-paying job in the Dallas sports marketing business. We had moved to Dayton so that I could take a job as an assistant professor at United Theological Seminary, and shortly thereafter she became pregnant with our second child, whom we would name Sean.
Like many parents, we had visions of our kid being, well, a lot like us. Our son Luke is in many ways. He’s an overachiever. He sets a high bar for himself. He’s his own worst critic. He has a bit of a hyperactive sense of responsibility. He’s been a serious kid since the day he was born. These traits will help him and will also cause him significant angst as he gets older. I know this from experience, as does my wife.
Luke keeping Sean company in a hospital room.
Sean, however, is a different story. When I was first told that Sean had Down syndrome, it was like getting hit in the forehead with a two-by-four. Upon reflection years later, I realize that much of the pain I felt came from the my perception that he would have a diminished quality of life, which, of course, emerged out of what I thought a high quality of life meant. I was imposing a set of values upon him that were not particularly consistent with the Christian life.
Sean doesn’t have a serious bone in his body. All the world is a playground, a boundless, unbroken boulevard of opportunities to have fun. New people are immediately friends. Music is for dancing. Tables and open drawers are potential diving boards. Markers are for drawing, and every available surface may serve as his canvas.
Sean’s IQ is below average, although he is much smarter than people often given him credit for being. At nine years old he can read rather well. He is extremely proficient in using his iPad. He can solve problems of some complexity given time, and he has learned how to push his big brother’s buttons with amazing dexterity. Nevertheless, life is simply more difficult for Sean than for “typical” children. It is harder for him to learn. His fine motor skills are below average. While he speaks in complex sentences and knows exactly what he wants to communicate, it is often difficult for others to understand his speech. This last item is a source of ongoing, significant frustration for him.
Sean trying to get his big brother’s attention during an intense session of online gaming.
Recently there has emerged a movement to highlight the harmfulness of using the “r-word”: “retarded.” I fully support this movement, though I hear the word used quite often, even by other academics. It is a derogatory term used to insult people, whether mentally challenged or not. The consequences for using this term, however, are not particularly severe because self-advocacy can be very difficult for people with intellectual disabilities.
At its most basic level, the word “retarded” simply means “slow.” The idea is that the intellectual development of some people has been slowed down by a physical condition such as the presence of an additional copy of the twenty-first chromosome. Then again, we’ve come to understand much more in recent years about what intellectual development actually involves. One way in which the concept of intelligence has been complicated is by distinguishing between IQ and EQ. IQ, which has been the standard method of measuring intelligence for decades, has to do with logical reasoning, the kind one might use in analytic philosophy. The ability to analyze data and employ rational thinking relates to IQ.
EQ, however, has to do with emotional intelligence, an individual’s ability to identify, evaluate, control, and express emotions. People with a high EQ can pick up on nonverbal cues from others. They seem intuitively to know how others are feeling and are affected by these feelings. They are empathetic. Sean is not very good at controlling his emotions (then again, he’s only nine years old), but I would venture to say that he is better at identifying the emotional states of others than most people his age. He is, moreover, one of the most empathetic people I have ever met. When it comes to logical intelligence, Sean may be slower than many, but when it comes to emotional perceptiveness, his capacities are accelerated.
How we identify who is “intelligent” and who is not has to do with what we value. Having spent most of my career in academics, I have met many people who are off the charts on the IQ scale, but who are not particularly perceptive when it comes to assessing the emotional states of the people around them. For some reason, we place much more value on IQ than EQ. A low score on the former is a deficiency. A low score on the latter is simply eccentricity.
A person can also have a high IQ and be exceedingly morally deficient. Take Ann Coulter’s 2012 remark calling President Obama “the retard,” followed by an equally insulting response to those who criticized her remarks: “Screw them.” In using a slur that stereotypes people who are supposedly intellectually deficient, she has shown herself to be deeply morally deficient. She seems to be missing that trait of basic human decency that most people have, and yet she is still regarded by some as kind of public intellectual.
Likewise, consider Donald Trump’s recent comments ridiculing a reporter with disabilities. That a presidential candidate would make such remarks is shocking and disturbing. These remarks indicate a basic moral deficiency, again along the lines of common decency. Trump is, one might say, “ethically disabled.” His moral sensibilities simply aren’t functioning in a “typical” fashion. There is no question he has a high IQ, and without this characteristic he would not be where he is today. But his moral capacities are sorely underdeveloped.
When we think about the values that Christ taught us to embody, love, kindness, compassion, and self-giving should top our list of desirable human traits. Christ did not say, “Be smarter than one another,” but “Love one another” (John 13:34). He did not say, “Whoever wants to become first among you must achieve the most,” but rather, “Whoever wishes to become great among you must be your servant, and whoever wishes to be first among you must be slave of all” (Mark 10:43-44). When Jesus encountered a leper seeking his help, he did not lament all that this man had not accomplished because of his leprosy. He was “filled with compassion” (Mark 1:41). Logic, achievement, rational problem solving, and abstract thinking are not within the purview of Christ’s teaching. These traits are important, but they are not what is most important.
Sean praying for a baby at church.
People plan; God laughs. In retrospect, I can laugh, too. I can laugh with amusement, and some embarrassment, at the way in which I thought I had my life planned out. I can laugh with joy as well at the great gift God has given my family and me in Sean. Today, on World Down Syndrome Day, I thank God for Sean, for others like him, and for all people who recognize that God’s gifts may come through people whom our culture does not recognize as “typical.” My initial pain with Sean came from the fact that that he would not embody the things I thought were most important. Almost ten years later, I realize how much he has taught me about what the important things in life actually are.