Wednesday, March 2, 2016

Last week, someone treated my child with disability normally

Last week, someone treated my child with special needs normally.

It was so remarkable and unexpected that I posted about it on Facebook.

I'd asked the DJ who will be hosting Max's bar mitzvah if he would swing by our house to say hi. I wanted Max to feel comfortable with him, as I think he's going to be overwhelmed on his big day and the more familiar faces, the better.

Jay stopped by around 7:30, after his workday. By then Max was a little tired and not at his best, but it didn't matter to this guy.

He seemed comfortable around him right from the start.

He was friendly to Max, in a real way.

He didn't talk down to him or speak in a babyish voice.

He didn't look at him with sad eyes or give him a pity smile.

Jay engaged him in conversation and asked straightforward questions, assuming that Max would understand—as in, he presumed competence. He asked if Max had any requests and when my firefighter-obsessed boy said that he needed to be called Fireman Max, Jay said that was cool and didn't blink an eye. When Max informed him that he did not like loud music, Jay noted that a lot of kids didn't and promised him the music wouldn't be loud.

Jay spoke with him like he was talking with any child. Such a simple thing, yet it's everything.

"This made me happy—I wish it were a regular, everyday occurrence," remarked a mom who also has a child with disability, summing up the sentiments of many. "I love when people talk to my daughter, not at her or to me. I wish it happened more often."

"Sometimes it feels like that same act is like finding a unicorn," noted another commenter.

It's sad, but true: People frequently fail to treat kids with special needs like other kids.

Sometimes it's because they've had no personal experience with kids with disability, and just aren't sure what to say or how to behave. (Tip: Start with "Hello.")

Sometimes it's because people can only feel sympathy for kids with special needs; they assume their lives are inferior to the rest of ours, and they should therefore be treated as if they are tragic.

And sometimes, they assume that children with intellectual disability are incapable of communicating or interacting. Perhaps they consider them stupid—as is implied by the word "retard."

Today is the eighth annual day of awareness for Spread the Word to End The Word, a campaign started by the Special Olympics. For decades, the term "mental retardation" was the clinical diagnosis for people with intellectual disability. Then the words "retard" and "retarded" became slang for people doing ignorant, laughable or loser-like things—not words you want associated with your child with disability.

Six years ago, Rosa's Law replaced "mental retardation" in federal laws and literature with "intellectual disability." Many schools, doctors and hospitals, along with the Supreme Court, have also quit using the term because it's become derogatory, and the words "retard" and "retarded" slurs—including when they are used jokingly ("You're a retard for putting on your shirt inside out!")

When people call a friend a "retard" or a situation "retard" or "retarded" or refer to someone as a 'tard...

When people use the hashtag #retard or #retarded on Twitter...

When major Hollywood films like Tropic Thunder have entire scenes poking fun at "retards" and generate a popular meme "Never Go Full Retard"...

...they're spreading negative perceptions of people with intellectual disability. Why should my boy or any person with ID suffer the consequences of that? Don't they have enough challenges to overcome in life? 

Of course, people often unknowingly use these terms, not aware of their implications; even the president of the National Education Association referred to the "chronically tarded" in a speech last December. (She subsequently apologized.) And to be sure, these slurs are hardly the only reason people continue to treat children with special needs the way they do—yet it's one of them. Argue away but the reality is, perception matters in this world.

There are some heartening changes happening out there. Integrated education is enabling a new generation of students to  better view—and accept—children with special needs as peers, not pitiful creatures. There's inclusion in cheerleading. This year, a young woman with Down syndrome made headlines when she became an Alpha Sigma Alpha sorority sister at Murray State. There's also increased media and cultural mainstreaming of disability, including more people with disability in ads and catalogs; on runways; and trickling onto TV shows.

Teens are getting it, too—take a look at the #RWordStomp2016 video from the North Rockland High School Best Buddies Club.

Meanwhile, parents continue to raise awareness, forming nonprofits like Family Member (I'm on their board) and even creating comic books like Department of Ability. Siblings are speaking out as well. "Caroline is every bit as wonderfully flawed as any other teenager in this world," wrote Elon University student Michael Bodley about his sis, who has Down syndrome. "And she's really sick of you calling her retarded."

The solution involves changing perceptions about people with special needs, and it starts at home. Parents can help their children understand that even if kids with disability appear or act differently, at heart, they are still children. If you hear your child using the word "retard," if you see it in a book (the word "retard" appears in the bestsellers Wonder and Dork Diaries) or hear it on TV or in a movie, use it as a jumping-off point for discussion.

Avoiding the word "retard" is just one thing—one really simple thing—people can do to respect those with intellectual disability. Max deserves to be viewed as a person, period, not a defective one. People shouldn't decide who people with intellectual disability are before they've ever met them, exactly what the slur "retard" does.

I dream of the day when the Jays of this world, aka people who treat Max normally, are no longer a rarity.

And so, once again, this parent makes the ask: Please, use another word.

More on this:

So, what do you say when someone uses the word "retard"?

Would you call my child a retard?

20 reasons to respect my child with special needs

Do you get why this word hurts so much?

If you ask people not to use the word retard

Photo: Flickr/wallsdontlie


  1. Not a lot of people with ID initiate these campaigns. I just noticed that.

  2. I dream of a day when someone treating our kiddos "normally" won't be noteworthy. It's not rocket science we're advocating, it's as simple as talking to kids at their level - as this DJ did. Thanks for working hard to support the End the R-word campaign.

    On a lighter note, I giggled at the DJ being happy to call Max "Fireman Max" - because "Fireman Max" sounds like a great DJ name! :-)

  3. Always spread the word to end the word. 1st advocacy I did as a part of Best Buddies in middle school. The r-word is incredibly hurtful.

  4. As someone with an intellectual disability I find the R word offensive and hurtful. This is my first year of advocacy both myself and through best buddies. Spread the word to end the word!

    1. I'm sure you can create a campaign video or something for Spread the Word to End the Word.

    2. A lot of people do that. Ellen has in the past.


Thanks for sharing!

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