By Susan Chaplin

The first time I saw the word “retarded” used to describe my son, he and I were in the neurologist’s office. It was 1994 and Jeffrey was seven months old. Though we’d visited a pediatric ophthalmologist several times, this was the first time seeing a neurologist. When the white-haired doctor left the exam room, I glanced at his notes on Jeffrey’s chart. “Prognosis: Moderately Mentally Retarded.”

The words reverberated in my skull. Heat flooded my face. Until then, I had naively assumed that Jeffrey’s turned-in eye was a minor, curable issue, that his lack of muscle control was temporary.

Still, I remember scoffing at that prognosis, thinking the doctor couldn’t possibly know that outcome with a baby so young. I’ve learned a lot since then and realize that doctors rely on statistics and averages. They look at missed milestones and symptoms.

They don’t get sidetracked by wishful thinking or hope. 

But the word “retarded” shocked me. I hadn’t heard it used to refer to a person’s mental capabilities since I was in high school in the early ‘70s, when it was the accepted terminology. 

By 1994, I thought the word retarded was taboo.

Later, as Jeffrey reached elementary school age, we discovered the term “mental impairment” had become common vernacular. The special education system categorized classrooms by students’ degree of impairment. EMI meant “Educable Mentally Impaired.” TMI was “Trainable Mentally Impaired.” 

Those terms became unfashionable shortly, too, and less harsh and permanent sounding definitions replaced them. Classrooms became MOCI for Moderately Cognitively Impaired and MCI for Mildly Cognitively Impaired. I imagine the schools were attempting to be more precise and less frightening.

When it comes to your child’s classroom, “mentally retarded” is not how you want others to define your child. Early on, some parents used diagnostic terms as a kind of shorthand to talk with other parents. But over the years, I’ve noticed—happily so—parents try not to talk of their children with disabilities by describing their limitations. 

That’s because words matter. 

How we talk about someone affects who that person is, others’ perception of him or her, and how he or she perceives himself or herself.  

Around 2012, I learned of a movement called “Spread the Word to End the Word.” The campaign aimed to stop people from using the word “retard” casually—or at all. I thought it targeted kids on the playground, where calling each other names often included the insult, “you retard!” 

But it wasn’t just kids. 

Beginning in 2013, I was on a long-term project at work where we sat side-by-side with co-workers, small partitions separating us. My boss sat next to me. He led the entire project of more than 200 consultants. A considerate man with a wry sense of humor, his wife taught kindergarten. He often asked me about my son with special needs.  

One day, as we sat side by side, he complained aloud about a meeting he’d had. I listened, laughed, and added occasional comments. But at one point he said, “It was retarded.”

A silence fell. We both stared at our screens, pretending nothing had happened. I wanted to say something, to stand up for “Spread the Word to End the Word.” I should tell him how hurtful the word was, especially used as an epithet. I should explain that people with intellectual disabilities and their advocates had worked long and hard to develop better language to describe intellectual challenges. I should say how disrespectful it was to toss that word into a conversation so casually. But I sat there, conflicted and speechless, holding my breath. He was my boss, and I am not a confrontational person. Yet, I argued with myself, if I couldn’t tell this kind man how it felt, when would I ever speak up? 

Just as I worked up the nerve to say something, he spoke.

“I’m sorry,” he said. “That was thoughtless and I know better.”

“Thank you,” I said, air whooshing out of me. “I really appreciate you saying so.”

The word is harsh, foul. It also has an original meaning—to be delayed or slow—so I understand how it came into use. It is part of an evolution of language. It sure beats “idiots” and the many other names the world pinned on people with intellectual impairment over the years. But now we understand that when you use a word to describe someone that word often limits the person. The appropriate, and in my opinion the more human way to refer to our children, is now not to use a disability word as an adjective. Instead of “Downs baby,” we say a “baby with Down Syndrome.” Instead of autistic boy, we say “a boy with autism.” To remove the onus of the disability as the central focus of the person’s life, we’ve even moved to “differently-abled” and “neurodiverse.” 

In truth, there is another reason why the word retarded cuts into me with such force. Before Jeffrey was born, I considered intelligence one of the most important characteristics of a human being. I found intelligent men attractive; my circles included mostly smart men and women, and before that, clever boys and girls. I admired the ability to reason, to think, above almost anything else. To then have a son who was deficient in this area was a gift, as it forced me to rethink all of this. I finally realized that intelligence is not the measure of a human being at all. As much as school and my parents had instilled in me the importance of intelligence as a child, being smart was not the most important thing in the world. It did not equate with “human.”

What did? Many qualities: kindness, the ability to love, fundamental morality, the capacity to appreciate beauty. In other words, the soul.

Who cares whether Jeffery is intelligent or not? Does intelligence indicate my son’s worth to humanity? To me? My son—differently-abled, beautiful, kind, loving with a capacity for appreciating opera, live performances of all kinds, musicals, and dogs—he has a soul.  

Don’t call him a retard. Words matter.

Susan Chaplin is a Michigan-based writer and retired communications consultant. In addition to spending time with her family and friends, she enjoys reading, gardening, boating on and swimming in the Great Lakes, singing with the Community Chorus of Detroit and advocating for the rights of individuals with disabilities.  

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