The tyranny of two words

Mental retardation was coined as a medical term over 50 years ago—a then neutral term to replace idiot, imbecile and moron. But a quick trip to the thesaurus reveals that the words today mark a person as “abnormal, subnormal and deficient.” And any kid can tell you that the shortform “retard” connotes someone who’s useless.

Special Olympics is holding an awareness day today to encourage people to give up use of the R-word in casual, everyday language. I wrote about my support last Friday. But ever since then I’ve found myself fretting about the two words the R-word originates from: mental retardation.

Divorced from our culture, the words are relatively benign, indicating mental slowness. My angst stems from the realization that there is no way of separating out the stigma our culture attaches to these words.

My post may have implied that I’m totally cool with the clinical use of the words, when really, I’m not. They felt like an assault the day I first saw them attributed to my son, and they still do.

More importantly, I never, ever think of him in that context. What I mean by this is that I do not see my son—in any way—as “abnormal, subnormal and deficient” or as somehow of less value than someone with average or Einstein-like intelligence. He is a child who struggles to learn, but I do not see him as “slow.”

Mental retardation is not a topic of discussion in our house and we never told Ben about the diagnosis. We may talk about why things are harder for Ben to do, but we don’t label that under the catch-all of mental retardation. This is similar to our approach to our adopted daughter who has issues related to trauma and attachment. We might talk about why kids whose biological families are disrupted early have problems trusting others, but we would never tell our daughter: “You have attachment-disorder. You are attachment-disordered.”

On an everyday basis, these clinical terms that seek to categorize and delimit have no relevance to our life.

I remember a family whose healthy son had a massive, unexpected bleed in his brain. After months of gruelling rehab he regained his speech and some mobility. When his mom spoke to him about the fact that he’d lost his vision, his response was: “Mom! I may not be able to see. But I'm not BLIND!”

No one wants to be defined by a label that puts them in a box!

Perhaps some of you have the same feeling about the word disability. Because I've worked in a pediatric rehab hospital for so long, I've become desensitized to the word. But I remember when Ben was young I didn’t in any way identify him with having a disability, or being the opposite of “able.” I still don't think of him as “disabled” even though he has multiple disabilities.

People with disabilities have taken ownership of a word that was once used to stigmatize them, but the word itself—taken at face value as a negation of ability—hardly seems a starting point for describing the complexity of a human being. It doesn't in any way describe the flesh-and-blood people who adapt to all kinds of differences.

When I look at my son, the defining characteristic that rises to the surface is not disability. It's a mix of honesty, capacity for great joy and connection, and enthusiasm for life.

I see a kid who loves scrolling through photos of his classmates and family on his iPod. A kid who loves to dance to Pixar theme songs like “You've got a friend in me.”

I see a young man who stops on a busy sidewalk to wave his hello to the homeless man sitting on the concrete. One time he approached a man using a walker in a park and spontaneously gave him a hug. Another time he saw a man with dwarfism in a store and gave him an enthusiastic pat on the back (Ben too has a form of dwarfism).

I see a kid who humors his mother by calling her “cool.” And a kid who knowingly signs “sad” when his mom talks about missing Grandpa.

I see a teen who’s never been able to speak and struggles to hear, but surprises his parents and researchers by scrolling through an iPod he’s been given to communicate and finding folders we didn't think he could read: one for “manners,” one called “categories.”

My son experiences life fully. He’s already looking forward to his birthday at the end of the month. So last night when a package arrived that he figured held Star Wars characters he’s been asking for, he couldn’t contain his excitement. “When are you wrapping them?” he signed repeatedly. “When will I open them?” Then he went downstairs to look for the big container we keep the wrapping paper in. “Can I help?” he asked.

He’s a boy who adores tradition – he still likes pin the tail on the donkey and piñatas.

He’s someone who can lose himself in the silliness of a funny book or movie—giggling with abandon—even though he’s experienced more physical pain than I can imagine.

A couple of weeks ago I rubbed his back when a doctor held a mask to his face and he breathed in the stinky propofol that would knock him out for a cat scan. He's got more guts than I'll ever have.

My son is my hero. He's taught me more about life, about love, about courage and about what matters, than anyone.

Is it any wonder that parents like me want to throw off words that don’t in any way do justice to the essence of our children, and which have been twisted into epithets of cruel abuse?