I hear the word a lot. Less than I used to, but more than I’d prefer. The word is “retarded.” To many it remains a humorous synonym for words like “uncoordinated” or “stupid.” I probably hear it more than most because I’m really attuned to it. When I was a kid, it was common for boys to tease each other with the word “gay.” But that was ultimately declared unspeakable by polite society. We forced it out of our vocabularies.

That hasn’t yet happened for what families like mine call the “R” word. People”even those in polite society”still use it. They use it casually. Even in my presence. Even when they know that my daughter has Down syndrome. It seems they just can’t help it.

There are those who say that “retarded” is a medical term which has been used for decades to describe developmental disability and so it can’t be or shouldn’t be excised from the language. To which I reply, when was the last time you heard someone referred to as a cripple, or a spastic, or a vegetable? All terms once considered medically appropriate, but which have given way to more sensitive”and, I might add, more accurate”terminologies.

At times, I’ve summoned the courage to have really uncomfortable conversations with people that I genuinely like and who I knew weren’t trying to hurt my feelings or insult my daughter. Sometimes I wonder if I should lighten up. Maybe people don’t intend harm when they casually toss off this humiliating and dehumanizing word. Maybe I should try to give people the benefit of the doubt. Sometimes when you’re going for a laugh you cross the line. It’s innocent. Chill out.

And then something like this happens, and I realize that words matter. They matter a lot.

In case you missed it, let me summarize for you the case of Amelia Rivera and her family. Three-year old Amelia was born with Wolf-Hirschhorn syndrome, a chromosomal abnormality that results in distinctive facial features, low muscle tone, delayed growth and development, and a variety of other signs and symptoms. Like many families of children with these types of disabilities, the Riveras know their way around our health care system. For our families, life sometimes seems like an endless string of appointments, lab visits, tests, treatments, and therapies.

The hardest part for most families is maintaining the advocacy mindset. You really have to fight sometimes. There are a lot of obstacles to getting a child like Amelia the health care and educational services she needs. It takes extraordinary dedication and stamina to not simply give up or give in when a so-called expert recommends a course of action that to you seems wrong, lazy, or just plain stupid. Sometimes, you are torn between trusting someone with lots of abbreviations before and after his name, and listening to the voice of warning in your head. Sometimes you feel paranoid. You wonder if everyone isn’t out to trip you up.

Sometimes, as with my “R”-word obsession, you wonder if you should maybe just chill out.

Amelia’s kidneys aren’t working the way they are supposed to and she needs a transplant. According to the Riveras, the surgeons at Children’s Hospital of Philadelphia (CHOP) have refused to provide Amelia with the life-saving transplant for a very simple reason: Because she is mentally retarded. According to the Riveras, a doctor declared Amelia ineligible for a transplant”even if the family were able to arrange their own donor”because of her mental disability and for no other medical reason. There would be complications down the road, the doctor said. Difficult complications. Because of her disability, Amelia probably wouldn’t be able to remember to take her medication. Furthermore, this doctor insinuated that it was not his decision alone, but the decision of a committee of CHOP doctors.

That committee may not have an embossed plastic nameplate with the words “Death Panel” on its conference room door, but it ought to. It’s very hard to read the decision of the Children’s Hospital of Philadelphia as anything other than an Obamacare-emboldened shot across the bow of those who would deign to waste expensive and risky health care treatments on retards.

One of my favorite little games to play with people who think that words don’t matter is to ask them to replace the word “R” word with the “N” word. “Your daughter won’t remember to take her medication because she’s a [“N” word],” doesn’t quite seem as acceptable for a doctor to tell a parent, does it?

I have met people who have fought tooth-and-nail with school districts to keep their kids out of special education classrooms, who have battled with bureaucrats to avoid having label such as “developmentally disabled” and “mentally retarded” placed on their children. Some say, “Why? Why do you fight so hard for such a seemingly small thing?”

Because words matter. They matter a lot.

Matthew Hennessey is a writer and editor who lives in New Canaan, CT. You can follow him on Twitter @MattHennessey .

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Articles by Matthew Hennessey

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