Arlene is on the SCENE

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Look-it you! With yo’ pants all rolled up like a field hand! What’s wrong with you, boy?!

Just words, spoken by staff to a client of mine at a youth detention facility during a recent visit with him.  Putting aside the odd reference to slavery (that would be a whole other post), it was the tone that kept resonating in my brain for the rest of the day.  That unbridled contempt–what dark past did that explode from?  Why direct such disdain toward this 16-going-on-10 year old?  Because he was playing with his pants during a difficult conversation about his bleak future?

So I know this site is about fun things, a book that delivers a positive message about difference.  But my work brings me to another side of things, and I return with new lenses to look through.  How do I speak to others who are different?  Not just in words but in tone.  Especially when it comes to someone living with a developmental difference, or with autism where sometimes the conversation doesn’t sync up.  Do I have “a tone?”  I’m sure I’ve never accused anyone of occupying the bottom rung of the hierarchy of slavery, but that staff’s comment must have generated from something within herself, some past experience?  And while some of us hide it better than she did, we all have biases and attitudes and past experiences that shape our approach to life and the people in it.

Problem is these are hard to see, harder to acknowledge, and change?  Forget-about-it!  But it’s a new year, and now’s the time to resolve to watch what we say.

It really boils down to what one young man said during a presentation at a school in New York: “We’re all here for a reason.  Doesn’t matter if you never move, never talk, never see anything.  There’s a point, you know?”

Yes, there is.  We can’t always see that point.  We sure do see categories, don’t we?  Autistic, tomboy, juvenile offender.  But meeting others with an truly open mind is incredibly challenging.  I’m hoping we’re up for the challenge.

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We just had to share this story about a young boy who is fighting to take his service dog to school with him.  This reminds us so much of our beloved Harp, the wonderful Canine Companion who helped Marybeth for a decade with loyalty, earnestness, and yes, the cutest dog-face ever.  Harp was a member of Canine Companions for Independence, a fantastic organization that provides service animals for people with disabilities.  Service animals really do help with things like picking up hard-to-reach items and opening doors, but they also provide invaluable companionship.  We hope that with brave kids like Caleb fighting to make people understand the power of the canine, we’ll eventually see service animals everywhere!

Maybe in the sequel, Arlene should get a canine companion…

See what I mean? Harp--loyal, earnest, cute face

(And now you know why Arlene’s last name is Harper–a little known fact!)

This has been a powerful school year.  Arlene has proven herself to be a great discussion-starter!  By exploring the book’s themes we jump start conversations about disability, the concept of embracing who you are, and the idea of appreciating, not just accepting, the differences among us.  And of course, everyone we meet now knows what Charcot-Marie-Tooth disease and why we need to join together to spread CMT awareness.

We’ve hit over twenty schools this year, from Maryland to Massachusetts, the big cities of New York and Philadelphia to the small towns of southern Rhode Island.  Our travels were chronicled most recently by New York Newsday!

We love seeing Arlene posing on bulletin boards everywhere.  If you have an interest in a free presentation at your school next year, contact us here or email: carol @ hnf-cure.org.

Arlene On the Scene a class favorite!

A fourth grade class in Philadelphia studies Arlene

Stories like this one abound, and people are beginning to take notice.

It’s not easy to live with a disease nobody’s heard of.   But once word gets out there, through books like Arlene On the Scene and stories like the one in today’s New York Daily News, we begin to learn that Charcot-Marie-Tooth is just not that rare.

What is incredibly common is that people are not being properly diagnosed and treated.  It happened to Marybeth Caldarone, who didn’t find out she had CMT until she was in her thirties, despite being unable to walk independently for most of her life.  And it happened to Allison Moore, who was given cancer medications contraindicated for patients with CMT, despite having a known family history of CMT.

Allison was training for the New York City Marathon when treatment for an unrelated cancer triggered the onset of her CMT symptoms.  Now, ten years later, Allison is training again, on a bike this time.  She wears leg braces now to assist with walking, but with help from Dick Traum at Achilles International, Allison is getting ready to ride.

As Arlene says, it’s all about living it.  Allison Moore: “This year it’s the Bike Tour.  Who knows? Maybe next year it will be the marathon.”

You go, Allison.  We’re cheering for you.

Wow, we’re blogging.  What would Arlene say?

She’d say she’s happy to see herself on the cover of a book in the bookstore.  Not just happy, almost a little “giddy,” a word she’s heard her grandmother say.  She assumes it means happy-plus-some, but with those older people words, you just never know.

And she thinks her hair looks just fine even though her mother is sighing and shaking her head every time she looks at the cover.  Yes, okay, it’s a little stringy, but still, Arlene feels that she looks pretty good.  Perhaps even a little powerful.  Like she might pull that “S” right out of the sky.


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Arlene On the Scene is proudly sponsored by the Hereditary Neuropathy Foundation.

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