We Think Diagnosing People Helps Raise 'Awareness'—But Does It? | Opinion

One morning, my husband received an awkward emailed apology from an acquaintance. The contrite fellow did not elaborate on the nature of the offense, and my husband had no idea what he was talking about. The night before, they had been jamming together with a larger group of friends, synths and guitars and beatboxes and pedals, and all my husband could recall was hours of good clean fun. Finally, wracking his brain, he realized that the man was apologizing for dropping the R word in front of him.

Our reaction snowballed from confusion to surprise to wonder. He doesn't know our disabled daughter personally. Had another friend tipped him off?

But the truth is, we've used that word at times ourselves, part of the long, slow process of coming to terms with and actually understanding who our daughter is, and in turn, who we are.

Looking back, I can see that it was during her early adolescence that we did this, privately testing that forbidden word, not in serious conversation but while joking around with each other. It was when she was aging out of childhood and into this more complicated season, when we had to start evaluating her independence and plan for her future; when it was no longer quite right to say she had "special needs" but I wasn't yet comfortable with the words "developmentally disabled."

I'm not proud of our use of the word, but the struggle it represented for us is real, and the flexible uses of language are part of natural human behavior that we must avail ourselves of. It's not as if we were born ready, born knowing how to raise a child so different, unafraid of the uncertain future.

February is Rare Disease Awareness Month, but as non-profits gear up with t-shirts, stickers and social media campaigns (as a board member of Helping Hands for GAND, the non-profit for my daughter's ultra-rare genetic disorder, I have my heart set on scrunchies) to raise money and shine a light on the 7,000 diseases considered "rare," I find myself questioning the focus on "awareness." According to the National Organization of Rare Disorders, 90 percent of all rare diseases don't have an FDA approved therapy. It's a frightening statistic, though one tempered by the fact that some of these conditions aren't necessarily perceived as diseases by those who have them or their families. And some, like my daughter's, currently lack "disease" specific treatment, though they raise one's risk for medical conditions which are treatable, such as epilepsy.

What all this means is that that sometimes, identifying the condition—naming it—is itself the main consequence of diagnosis. During a national obsession with identity politics, "awareness" can feel like an invitation to add one more word to a string of identifiers. But beyond wondering how much of this is merely lip service, I worry that sometimes awareness of somebody's diagnosis actually makes it harder to talk about, and this matters, because sometimes we need to talk about these things.

I felt this way back in 2018, when my daughter, then nine, healthy, and very developmentally delayed, was diagnosed. Attending a conference for affected families, I was amazed to finally meet other people who sounded and moved like her, to connect with mothers and fathers who understood the challenges of raising a child with this particular genetic condition.

Still, despite my happiness at finding this community, when we were handed rubber bracelets bearing the name of the gene and the order to "SEARCH IT!" I found myself wondering: But why?

Can we not be aware of each other without being aware of our diagnoses?

Before my daughter was diagnosed, I talked about her development, the support she needed, and how I provided it with friends, educators, and medical professionals. Because there were no expectations about what she might achieve, I needed and wanted to talk about the surprises, difficulties, and rewards we came across. Putting this experience into words helped me understand it and helped me feel understood, and it gave people information they needed.

But in the first year after getting that diagnosis, I watched two doctors, examining her for completely unrelated reasons (dermatology and ophthalmology), Google the condition in front of us in lieu of asking questions. The handy diagnosis shut down any conversation.

Even as I've grown more connected to the supportive community built around her particular genetic mutation—something made possible only by her diagnosis—I have remained skeptical of the value of this label. There is so much more to awareness than simply knowing what something is called, and sometimes labels can have the opposite effect, flattening one's perception.

Nietzsche once wrote, "That for which we find words is already dead in our hearts. There is a kind of contempt in the act of speaking." I think rather that it's those things for which we have a specific word—a diagnosis, useful or not—that get locked down, removed from questioning.

On a bright afternoon walk through the National Mall in Washington, D.C., my daughter stopped and looked at the people next to us, frank curiosity on her face. A teenage boy sat in a mechanical wheelchair, his hands contracted, his head twisting to the side. When his mother saw my daughter staring, she said, "Everybody's different."

I wanted to jump for joy, high five, bear hug her—because these two words held forgiveness where there might have been anger, because they were undeniably true, and because they suggested that even as she bore the weight of a stranger looking at her son, she saw us in full.

Did she know that my daughter was disabled? Was it a hand on a forearm at the crosswalk, a childish article of clothing? (More likely, it was the open staring that gave my daughter away, if anything.) Maybe she didn't know, and she says that to everyone. Even better.

Everybody's different—and these differences cannot be squashed down to a single word, a hashtag, a diagnosis.

Of the many experiences that come to my mind when I think of "awareness," none had anything to do with knowing the name of my daughter's genetic disorder. In fact, sometimes it's the absence of words, or the wrong word—the musician friend's careless joke, and his fumbling email—that bring about moments of real awareness.

Kristen McConnell is a nurse. She is writing a book about how medicine influences our identities.

The views in this article are the writer's own.