The R-Word: The Monster Under the Bed as the Sibling of Someone With Down Syndrome

Merriam-Webster’s dictionary defines the r-word as:

1: informal + offensive: very stupid or foolish 2: dated, now offensive: affected by intellectual disability: intellectually disabled.

From a very young age, I learned that the r-word was bad. Not the way the f-word is bad, just a different kind of bad. Growing up with Pete, my brother with Down syndrome, my parents told me people sometimes use the r-word to imply “stupid.” They went on to explain why it was such an offensive word, especially for our family.

Yet, I heard this word often. It was so common, I was surprised it wasn’t on any of my weekly vocabulary tests.

At some point, the word went from three syllables to two – where it was once used as an adjective, it was also being used as a noun. Two versions of this horrible word meant more ways to offend. But the shorter version somehow inflicted a deeper wound in me. A few less letters, a lot more punch.

As I matured, the strength and power of the word (both variations) did, too. It was the proverbial monster under the bed – quietly waiting, stalking its prey until the moment it pounced. I’d be talking with either friends, acquaintances, or strangers, and all would be fine until the other person uttered that dreaded word.

My heart would sink, and anger and judgment would find their way into that sunken space. I wanted to say I was hurt and offended by their use of the word. But I couldn’t find my voice. The words seemed trapped in my throat.

Just when I thought (fill in the blank) was a nice person, I guess I was wrong. 

I’d silently criticize those who used it. It took me a long time to understand that they often weren’t bad people, just unaware of the weight and sting of the word. Conversely, if I met someone who never used the r-word, I  assumed they must be decent.

My world became polarized. I was forming conclusions about people’s character based on whether or not they used this word.

Each time I came into contact with someone who used the r-word, it felt like a personal insult, like the other person was attacking Pete. And as his big sister, I felt it was my duty to protect him. I believed my failure to communicate my feelings was essentially my failure to protect my brother.

Our neighbor, Robert, took this word to a whole new level. He was in a local motorcycle club where each member had a self-deprecating nickname using alliteration: Alan was Angry Alan, Jeff was Jerky Jeff, Mike was Moronic Mike, Oscar was Oblivious Oscar – you get the idea. I never actually met any of these other men, but we heard stories about them and how they lived up to their dubbed names.

To my family, Robert’s chosen nickname was the worst one: His name was preceded by the r-word (just to be clear: Robert didn’t have a developmental disability).

Each member had a customized director’s chair displaying their nickname. On weekends, Robert sat in his front yard in his bright yellow chair, its thick, bold black lettering emblazoned on it. Those letters burned my eyes and taught me how flawed humanity can be.

Robert never made the connection between his nickname and my brother. “But he has Down syndrome, I’m not making fun of that!” he once said to my parents. He honestly thought he wasn’t doing anything hurtful. He believed he was being playful with the use of the r-word (as if such a thing is possible), not malicious. He certainly never intended to offend my family.

Pete was too young and never understood what was going on. One might argue his inability to comprehend this was a blessing.

It occurred to me during these years how people often used other words, like “lame,” in a derogatory fashion, similar to how the r-word is used. Sometimes, I even caught myself saying lame without truly recognizing its impact. Merriam-Webster’s dictionary defines lame as “having a body part and especially a limb so disabled as to impair freedom of movement” and also “marked by stiffness and soreness.”

Merriam-Webster also defines the usage of lame as slang: inferior, contemptible, and nasty.

Society has an incredible way of taking speech and altering it so it means something else entirely. It’s tragic how we can take words that imply weakness, inability, and incapability and turn them into insults. Idiomatic language, euphemisms, slang – whatever you call it, we have a distressing way of reimagining the meaning of words. And sometimes it’s not even the word itself, it’s a variation of the word, as in the case of the r-word.

By the time I got to college, I felt a lot of guilt and shame for never speaking my truth, never admitting how hurt and offended I felt.

My failure to protect my brother was slowly eating away at me. I decided to tell my dad how I was feeling. He totally understood and said he faced this dilemma as well. Unlike me, though, he had no problem conveying his discomfort to those who used the r-word. “Lisa, find your voice, your own way of expressing yourself. It’s important. You’ll feel better once you do,” my dad encouraged.

It sounds so easy. But it wasn’t. It proved to be very challenging. I tried different ways to insert this into conversations if the r-word came up. Most people were very kind and understanding, which was a relief. I became more confident speaking up the more I was validated with positive reactions.

Once at a job, a colleague used the r-word to describe a client who wasn’t being cooperative. My insides turned as I heard this. I knew I had to say something.

“Henry, I have to tell you I’m really uncomfortable hearing that word – not only is it considered offensive and outdated, but it pains me personally since my brother has Down syndrome.”

“Oh my gosh, I’m so so sorry!” Henry said regretfully. “I promise I’ll try to be more considerate going forward. I honestly didn’t mean to insult you.”

But like most habits that are hard to break, he often slipped and when he did, he would glance my way with an apologetic look and mouth, “I’m sorry!”

Another time, when I heard a friend of a relative say the r-word, I once again spoke up. She was very understanding and realized she had been using the word for years not realizing how disrespectful it is. She actually thanked me for bringing this to her attention.

As time went on, I got into a rhythm of expressing myself better. But like all of us, I’m still a work in progress. I want to say at this point, all these years later, I am a pro at communicating my feelings, but unfortunately, this isn’t the case.

There are times in recent years when I revert to my younger self and stay silent. Most of these times are when I’m dealing with someone in authority, or someone I fear will get defensive. My silence is almost always followed by regret.

I want to be optimistic that there will come a day (soon, I hope!) where I won’t need to say anything because the terrible r-word will be eradicated from our collective vocabulary. I want to live in a time when Merriam-Webster describes the word as not only dated and offensive, but also obsolete. A time when I no longer feel threatened by that proverbial monster under the bed.