Posted: Oct 09, 2013 8:00 AM
 
Laurie was on an airport shuttle recently when she struck up a conversation with another passenger. Laurie shared she was on her way to a Down syndrome conference because she has two sons with Down syndrome. Moments later, the passenger used the R-word to refer to her travel itinerary.

Laurie was dumbfounded. Before she could sort through her thoughts, the woman used it again.

"All I could think about was the way that she was comparing something in her life that didn't make sense to my sons, and she was saying that they were imperfect; they were worthless; they are insults."

All I could think about was the way that she was comparing something in her life that didn't make sense to my sons, and she was saying that they were imperfect; they were worthless; they are insults.

"Now my heart is pounding, and I know that if I leave this van without saying something, then I am doing a disservice to my boys," Laurie says. The van stops. "This is my only chance," she thinks.

Choosing words- retarded

Image credit: Alison Rowan

Facing the bully

"I lean over the seat and very politely say something like, 'I'm sorry, I just have to say something before you leave. You used the word 'retarded' in our conversation earlier'… Then I went into my speech about how even if you don't mean to use it in a condescending way toward people with disabilities, it's still a really rude comparison to make. It offends many people, and there are so many better ways to express what you are feeling."

The rest of the conversation is a blur, Laurie says, "But, oh! That feeling of facing a bully! …I hate confrontation, but this word — and the way that people flippantly use it — affects my babies. Not just the ones with Down syndrome, but their siblings as well."

What would you do? Some organizations that advocate for people with disabilities share tips and even practice scenarios. Here are some of my favorites.

Decide how you feel

Decide you want to be an advocate before you find yourself in a situation that catches you off-guard.

Do you have a personal connection to someone with an intellectual or developmental disability? Would you ever want them to hear someone use the R-word? If you don't have a personal connection, ask yourself what advice you would give a parent of a child with an intellectual or developmental disability, when the parent knows one day she will have to explain to that child why someone called him the R-word.

My point is, decide you want to be an advocate before you find yourself in a situation that catches you off-guard. Feeling firm about speaking up is the first step.

Plan ahead

"Have a rehearsed, scripted line that you are ready to say," Laurie advises. For me, I need to be ready with a line that forces me to continue, such as, "I really want to explain why a word you just used upsets me." Get that sentence out, and you will break through that barrier of, "Do I say something?"

Be polite, not emotional

"Don't be confrontational," Laurie says. "Even empathize with them, for example, 'I used to use that word before my son was born and I realized that it was hurtful.'" Showing someone you're not judging but simply want to share your own perspective can help alleviate defensiveness.

Educate, don't shame

"I don't want people to stop using the R-word because they are afraid they'll be berated by special needs parents," Laurie says. "I want them to stop using it because they understand that they are dehumanizing a group of amazing people."

Prepare for excuses

Be ready to address the most common responses, such as, "Well, I didn't mean it that way," or, "Isn't that just about political correctness?"

Give yourself permission to stay silent

Dr. Brian Skotko, co-director of the Down Syndrome Program at Massachusetts General Hospital, has worked with people with Down syndrome and their siblings for years.

The guilt of those silent moments had always eaten at me, like I'd let my son down. Then I thought of all the times I had said something. I had spoken up. I realized those were what mattered.

In a presentation to parents, he shared advice that immediately depressurized my social spine, or my inclination to feel the need to speak up every time I hear the R-word.

"You don't have to stand up every time," Dr. Skotko said. "There will be challenging moments that might not be the moment you're going to be an advocate," he continued. "Sometimes, it's just not the moment to be courageous."

Dr. Skotko and his colleague, Sue Levine, created a YouTube post titled, What to do when you hear the "R-word." They also address the question in their book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters.

I thought back to the times I'd spoken up, and the times I'd stayed quiet. The guilt of those silent moments had always eaten at me, like I'd let my son down. Then I thought of all the times I had said something. I had spoken up. I realized those were what mattered. And I let the other memories slip to the floor.

Read more about the R-word

One mother's plea to stop use of the R-word
Dear Bullock, McCarthy: I'm ashamed of you, too
Why Ann Coulter doesn't matter, but words do

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