‘Spread the Word Day’ reminds me of our own encounter with the R-word

The service organization Best Buddies International has had a campaign going this month to “End the R-Word,” as the subject line in an email it sent out a few weeks ago put it. Best Buddies, which creates social and job opportunities for people with intellectual disabilities, has been conducting this campaign since 2009. This month, it declared March 4 to be “Spread the Word Day,” devoted to ending the derogatory use of “retard” and “retarded.” 

“Change the language,” Anthony K. Shriver, the organization’s founder, says in a video promoting the campaign. “Change the culture. Because dignity isn’t optional.”

I’m on the Best Buddies mailing list because our daughter Abby, who has Rett syndrome, has been to some of the group’s events, and the R-word email brought back memories of our encounter with that word early in our experience as a Rett family, and what we learned from it.

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Abby, who was born in 1997 and is 29 now, has a sister, Emily, who is 10 years older than she is. We first got Abby’s diagnosis when she was about 2 and Emily was in the “tweener” years. We were still wrapping our heads around the implications of Rett syndrome when, one morning, Emily presented us with an odd request.

“Could you drive me to school?” she asked.

This made no sense, because the school bus stopped practically in front of our house, and Emily had tons of friends who rode it with her. We asked why she suddenly needed to be driven to school.

“I just do,” she said in that noncommunicative way tweeners have.

We kept pressing her, and eventually the truth came out: She didn’t want to ride the bus because one of her best friends was fond of tossing the R-word around casually. Emily would do something goofy and the friend would say, “Oh, Emily, don’t be such a retard.” 

Up to that point, we hadn’t been sure how much Emily was absorbing about how Rett syndrome would impact her sister — that it would mean Abby would never talk, would lose purposeful hand use, would have seizures and scoliosis and other health problems, and would be cognitively impaired. Now we knew that, even though she was just 12, Emily understood everything. And the R-word, although being used by her friend thoughtlessly rather than maliciously as some people use it, was no longer just a kiddie taunt; it was something Emily couldn’t bear to hear. She didn’t want to ride the bus because she didn’t know how to ask her friend to stop using the word.

My wife, Donna, and I huddled for a bit and considered driving Emily to school, but in the end decided against it. We gave her a hug and shoved her out the door toward the bus.

A few days later, Donna took Emily’s friend aside and gently explained Abby’s condition and its relation to the R-word. That’s all it took; the R-word disappeared from the friend’s vocabulary. And maybe the kid learned something. Donna and I certainly did. We learned that Rett syndrome would affect not just Abby, but everyone in our family.

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