Arlene is on the SCENE

No Wonder We Set the Book in Rhode Island…

Posted on: March 23, 2011

…because it’s such an awesome place!

We had the best time bopping from school to school in my home state, talking with kids about the ideas behind Arlene On the Scene and about our mission to support people living with CMT.

We had some of the most amazing conversations!  At Monsignor Clarke School, where Grace attends, students were very interested in the science of it all.  “If they’ve given CMT to mice, then they already have the recipe.  They should just follow the steps in reverse, and they’ll get rid of it!” one young woman stated in exasperation.  Good point, we thought.  But then another student pointed out that when mixing chemicals, one has to be careful of unpredictable reactions, so he advised that the researchers use caution when developing new treatments for CMT.  We agreed.  Finally, one assertive young woman took the microphone from Carol and made her point quite clearly, “Grace is my friend.  I just don’t even see the leg braces anymore because she is just my friend, and that’s it.”  We couldn’t have said it better ourselves.

At Kizirian School in Providence, one class wrote a limerick in honor of Arlene.

There once was a girl named Arlene

Who was always on the scene.

The kids thought she was cool.

She became president of the school.

Next she will run for Queen.

Thanks Kizirian!  You were terrific!

I was lucky enough to return to my own alma mater, Sherman School.  Ah, what great memories.  For those of you not from Rhode Island, that white thing on the left is a bubbler.

At nearly every stop we made, we heard from brave kids who told a roomful of their peers about their own differences.  You impressed us so much with your courage and honesty.  Here’s to the girl who showed us her own leg braces, to the kids who told us of their struggles with Attention Deficit Disorder, to the boy who talked about his brother with autism spectrum disorder and the teasing he faces, to the girl with the young cousin who lives with multiple sclerosis.  We are fortunate to have had the opportunity to talk with you and hear your stories.

I keep coming back to the words of that insightful young man at Hopkins Hill Elementary School in Coventry: “It’s like we think people with disabilities can’t do stuff, so we kind of lock them in this little cage.  But they can.  And so we just need to like, unlock the cage.”

I love that metaphor because it reminds me to unlock and open my own mind to differences, whatever they may be, and practice the art of appreciating those differences, not merely accepting or tolerating them.


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