Who defines “normal” anyway?

“But she’ll never be normal.” – said me

“Well, who is really normal these days anyway?” – said a bunch of people

It’s a snippet that’s been on repeat in conversations over these last few months. However, I didn’t think much about the concept until I read, “Raising a Rare Girl” by Heather Lanier.

I’ll never think about normal the same again.

The author, a Communications professor and mom of Fiona, a girl with a rare chromosome deletion, breaks down where “normal” came from — and why it’s been so damaging to not only kids with disabilities, but for our society itself.

It touched me so much that I wept when I read it. And I keep thinking about it, rolling the concept over in my mind many weeks later.

So I wanted to share that excerpt with you.

A note before you start

If you like reading our blog or if you’ve ever said, “Gosh, Mallory, y’all should write a book,” then you should consider the audio or kindle or print version of Heather’s book. I don’t think Brian or I will ever write a book, in large part because there are books out there like Heather’s that are just fantastically written and say everything I wish I could have said, but so much better. (Plus, I really have no desire to write one.)

But on the topic of her book, when I say she’s a great writer, I mean it. I’m very picky. Not only is it a delight to read how she puts words to a page, but it’s full of so much wisdom. (My kindle version is full of highlighted markups.) I finished the whole thing in a week, which surprised my socks off because I NEVER finish books. So that’s how good it was.

So here’s an excerpt from one of the chapters. All bolding is mine–I’m just highlighting some of the stuff I found so good.

Full excerpt from Heather Lanier’s “Raising a Rare Girl”

One late afternoon Justin’s cousin and I stood on the wood deck of the rented beach house, staring across the Atlantic. The sun was sliding behind us. His lanky preteen daughter was running in the sand, past earshot.

“She’s in the ninety-ninth percentile in math,” Justin’s cousin said of his daughter. “She’s in the ninety-ninth percentile in reading. She’s even in the ninety-ninth percentile in height. Anything we ever test her in, she performs in the ninety-ninth percentile.”

He carried a father’s pride, yes, but he also spoke with a combination of curiosity and confusion, as if the tests were a strange problem—they couldn’t challenge his daughter. He couldn’t find a yardstick that matched her extraordinary skills.

The beach was thinning out. People were collapsing large umbrellas and shaking out blankets of sand. The waves rolled in regardless: crest, then collapse, then foam and retreat. I stayed silent. A year earlier, I would have said, “That’s great.” And it probably was great—to have a child so exceptional. But I’d been carrying around the virtues of achievement for as long as I could remember.

I recalled envelopes with their perforated edges, the ones I was handed semiannually in grade school. When I tore them open, I saw the graph of my performance on some standardized test. I followed a horizontal black bar all the way across the form, to the number that labeled me: 99 percent. His daughter’s situation was once mine.

In sixth grade, I was the fastest girl to run the mile. In middle and high school, the courses I took were called “honors” and “advanced placement.” The older I got, the faster the other runners ran, the harder the exams became. The last SAT questions perplexed me. Perfect scores were now a few hundred points away. I’d met my match.

In high school, we students were ranked in order of our GPAs, and we learned our rankings on our report cards. The three kids vying for valedictorian sweated incremental differences, mathematically out of my reach. I graduated twelfth out of four hundred. Decades later, I’d tell a Canadian friend my number. “They ranked you?” he asked, appalled. “Of course they ranked us,” I said. “How American!” he said.

It had never struck me as strange that I knew precisely where I fell among my peers.

In his essay “Constructing Normalcy,” Lennard J. Davis argues that the concept of “normal” was developed rather late in human history. The word “normal” as we might think of it—constituting, conforming to, not deviating or differing from the usual—appeared in European languages in 1840, he says. Prior to that, “norm” was a carpentry term, meaning “perpendicular.”

Davis links the appearance of “normal” with the emergence of statistics, which seems benign at first until he notes that Belgian statistician Adolphe Quetelet championed “normal” as a virtue. By studying human features like height and weight, Quetelet created and hailed the Average Man.

Enter the bell curve, otherwise known as “normal distribution,” the bell-shaped graph that represents at the very top the most average and expected outcome, and at the edges—the lips of the bell—the most unexpected, the unusual, the outliers.

Before Quetelet, the bell curve hadn’t been applied to human beings. Suddenly, it was illustrating what among us was typical and what was abnormal.

As Davis puts it, “The average man, the body of the man in the middle, becomes the exemplar of the middle way of life.” Quetelet himself writes: “Deviations more or less great from the mean have constituted ugliness in body as well as vice in morals and a state of sickness with regard to the constitution.”

Normal was good; deviations were bad.

But in the late nineteenth century, Sir Francis Galton argued that some “standard deviations” on the bell curve were more desirable than others. Tallness, for instance, and high intelligence. The traditional bell curve—or “normal curve,” as it was also called—didn’t reflect these priorities. It showed both tallness and shortness as outliers, deviants—“ugliness,” in Quetelet’s words.

So Galton revised the bell curve to rank desirable traits and ensure that they were read as superior to undesirable deviations.

You don’t need to connect too many dots to see how this thinking leads to some of the great horrors of the twentieth century. Before the Nazis used their gas chambers on Jews, they tested them out on the disabled.

“We must remember,” Davis writes, “that there is a real connection between figuring the statistical measure of humans and then hoping to improve humans so that deviations from the norm diminish.” It was actually Galton who first coined the term “eugenics” in 1883. It was Galton’s ideas that led, according to Davis, “directly to current ‘intelligence quotient’ (IQ) and scholastic achievement tests.”

In other words, Galton’s ideology is an ancestor both to the Holocaust and to the fact that I know my graduating high school rank.

“The ‘problem’ is not the person with disabilities,” Davis writes in his essay, which I will read two years after this beach trip and which will nearly cause me to sing hallelujah. “The problem is the way that normalcy is constructed to create the ‘problem’ of the disabled person.”

Even a year into Fiona’s [the author’s daughter with a rare chromosome deletion] life, I was still just learning this truth. If you viewed my daughter through lenses that valued, above all else, normal or above average, then my kid was a problem.

“In mainstream America,” writes Deborah Deutsch Smith in Introduction to Special Education, “quantifying human performance is the most common method used to describe individuals. Unfortunately, this way of thinking about people puts half of everyone ‘below average’ and forces individuals to be considered in terms of how different they are from the average. For students with disabilities, this approach contributes to the tendency to think about them as deficient, as somehow less. . . .”

I don’t remember what Justin’s cousin and I talked about after the ninety-ninth-percentile remarks. I only remember my silence and the ocean’s rhythm as I sat with a new knowledge: I could no longer join Justin’s cousin in measuring people. I couldn’t bring my former virtues of rankings and achievement into parenting. I had to quit that game.

Looking out at the gray-blue ocean, from which Galton’s cousin, Charles Darwin, had showed us our evolution had crawled, I felt nudged toward a different way of seeing.

Go on, now. Learn something new.

“Eugenics” can be translated to mean “well born” or “good creation.” But its essential opposite is the reason we recoil from it today: poorly born, bad creation. We remember eugenics as an ideology that sought to weed out the unwanted, and we know the qualities of the unwanted were determined by the people in power, who deemed themselves wanted: white, straight, able-bodied, presumably Christian.

I hear again the pediatrician on my child’s third day of life: Bad seed, bad soil. A modern-day eugenicist.

But here’s something beautiful. “Eugenics” shares an etymological root with the word “genesis.” They’re both related to the Greek verb gignomai, meaning “to come into being, to become.” There are fewer passages in the Bible more satisfying to me than its first verses. In the beginning, God makes everything—light and water, land and sunflower, lemon tree and whale and star-nosed mole. After God makes each thing, the book reads, “God saw that it was good.”

I used to remember it as “God declared each thing good,” but the Bible doesn’t even say that God made each thing good. It says God saw that these things were each good. The verb is eidō, to know, to perceive, to behold.

No matter how you read the Bible, as history or fiction or poetry or myth, no matter whether you believe it’s the inspired word of some higher power or just another human-made tome, the writers of the first page want to tell us something: when we perceive with the lenses of the divine, we see goodness.

I hadn’t yet come across a certain teisho (or Buddhist lecture) by Soen Roshi, but years later I would read a transcript, and it would again bring me right back to this moment at the beach, with a father and his ninety-ninth-percentile daughter and the mammoth ocean. “Everything is our teacher,” Soen said. “This!” Bang—he slammed his hand on a table. “This is the real one point; very easy to understand. Too clear, too easy to get This! . . . Everything is wonderful! . . . Each one is best.”

The modern mind might cry out, Impossible. “Best” commands a pyramid-like hierarchy, of which “best” is at the tippy-top. “Best” is superior, premier, the One. If “each one is best,” there is no pyramid. There’s not even a bell curve. There’s only a plain.

But the Zen master’s words jam a wrench into the gears of Galton’s eugenics. His words flatten the bell curve, scramble statistics, scribble crayon over Quetelet’s Average Man.

Fiona had been ranked her entire first year, and she always came up short.

Justin’s cousin’s daughter had been ranked her entire life, and she always emerged far ahead.

Each was best. Each had an opportunity to play a role in this moment’s unfolding. Each was coming into being—as gignomai is translated—just like the stars came into being, and the first human came into being, and I, a mother—an imperfect mother—was continuously coming into being.

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Did anyone else get the chills when you realized where the concept of normal came from and what it led to? I’ll never think of the bell curve, ranking students’ performance, or “normal” again.

Now, if that was even remotely interesting to you, go buy Heather’s book.