Arlene is on the SCENE

Archive for the ‘Let’s Talk About Disability’ Category

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.

Okay, I do think George Guiliani has a point.  On a recent news show he spoke out against the “bullying” that occurs during that old Christmas show about Rudolph.  I mean, I remember cringing as a kid watching poor Rudolph get banished from the reindeer games.  I cringed in part because frankly, the scene was familiar.  No, I didn’t get ostracized like that myself, but that crowd mentality–you’re too weird to fit in here–was pretty common, at least where and when I grew up.

So yes, he’s got a point when he highlights that this is mean.  Um, yes, we realize that.

The point of the Rudolph story is that his “difference,” a big ol’ red nose, saves the day.  Huh, appreciating differences–are we still talking to kids about that?  You bet.  Doesn’t seem to have sunken in yet.  Or maybe the net cast around difference has to be further widened.  Because while we all give lip service to accepting difference, it’s a whole other story to really appreciate and embrace them.  In the end, we’re all more comfortable with the familiar.

So I think we can’t re-watch the Rudolph story enough.  You’ve got to acknowledge the wrong before you clear a path to what’s right.  You sanitize your message too much and you’re just not credible.  As a therapist, I do believe we’ve got to get down into that swamp of negativity before we can clean ourselves up.

But I think Guiliani’s other point is more important and less attended to: why does Rudolph have to save Santa, the reindeer, and even Christmas itself before he’s accepted?  As my co-author Marybeth would say, “Where’s the applause when I heave myself outa bed into my wheelchair at 5 am?  Isn’t that inspirational?”

Researcher Laurent Mottron recently wrote a commentary talking about changing perceptions and the power of autism.  I read this post at the end of two days visiting south Philadelphia schools, talking to kids about appreciating differences and really opening their minds to seeing disability as a difference, not as a problem.

(BTW, Big shout-out to my friends at A. Vare, Taggart, George Washington and Kirkbride!  It was so great to meet you!  Hope to be back soon!)

Talking to students at A. Vare school in south Philadelphia

It struck me to see this message echoed in scientific literature.  What I tell students is that this concept of “disability as difference” is something to strive for.  Indeed, critics of Mr. Mottron’s commentary point out that there are many families who think autism is not a powerful gift, but rather a daily challenge.  A good friend whose son has autism once said to me, “Stop talking about this ‘autism community.’ If there is such a thing, I want to cancel my membership.”

I get that.  On the other hand, if we can inch back those walls that clutter our own minds–just a smidge!–we will really begin to see change. (I often point out to students that even Sesame Street contributes to this, with their whole “Pick out the thing that doesn’t belong” exercise!)  Striving for this perception at least points us in the right direction.

All disability isn’t merely a difference like race, culture or religion.  It’s just not that simple.  But just as we were taught from the get-go to categorize things and to feel sorry for people who can’t do things like we can, we have to counter this mentality with the idea that sometimes disability is something to be appreciated, something that adds to our society’s mosaic in a positive way.

This is what we try to convey within Arlene On the Sceneand within our free school presentations.  Responsibility for changing these perceptions and expanding the meaning of disability lies squarely within us.


A report was just released with dismal statistics: of 647 characters appearing in scripted programs on network television (ABC, NBC, CBS, CW, Fox), five have a disability.  Five.  And yet, people with disabilities in this country number over 50 million, one-fifth of all Americans.

And we wonder why living with a disability is sometimes challenging for kids, why it’s so hard to integrate a disability into a positive self-image while growing up. Because we’re not out there!  Kids with disabilities don’t see themselves reflected in our culture.  Disability can’t become part of “the norm” when it’s not a common part of our everyday lives.

We wrote Arlene On the Scene in part for this purpose–to throw out into the mix a girl who happens to wear leg braces, kind of like the (ONE!) guy on Glee who uses a wheelchair that everyone knows about (although the actor doesn’t use a wheelchair).  We hope that more follow along.  Copy-cats welcome!

And that’s also why we’ve taken our show on the road, visiting schools to talk to kids about disability being just one part of a person’s mosaic.  We’re scheduling free “author presentations” now for the 2011-2012 school year, so be sure to contact us if you’re interested.  Our Teacher’s Guide is available for free download here as well, providing over 50 pages of classroom activities to utilize Arlene On the Scene in grades 3-5, or as a guided reading for younger students.

Who knows?  Maybe Arlene will be the next Disney sitcom star?  What do you think?

Hey, it’s Arlene again.  Yes, I’ve been gone all summer.  I mean, not really GONE, but you know, you and I haven’t really talked in a while!  Doesn’t it always seem to go that way?  We say let’s stay in touch over the summer, but then we go to camp, Mom and Dad drag us off to see cousins and family, we watch a whole lot of TV, whatever.

But I did read some great books too!  I read the new Diary of a Wimpy Kid, and to get a little more serious, I read Esperanza Rising.  That was good.  I also read the Guiness Book of World Records because one day I will set one.  Haven’t decided which one yet.  I know it’s NOT going to be longest fingernails, because I tend to bite them.

But now it’s time to go back to school.  Part of me is really excited.  The other part is…I don’t know…nervous.  Just like last year.  This year my braces aren’t new, but still, it’s stressful, you know?  I read this thing online that made me laugh, but it was also very true.  Here, you can read it yourself, but come back to this page so we can finish talking.

So this girl is a little older than me, but she is talking about going to school with a disability, an “upper limb deficiency” to be exact.  I had to ask Mom what that meant.  As far as we could tell, sounds like this girl has only one arm, or at least only one hand.  Now that seems pretty intense to me.

But then again, I have Charcot-Marie-Tooth, and that sounds pretty intense to most other people too.

But what made me laugh is that when kids asked this girl what happened to her arm, she said it got flushed down the toilet!  Crazy!

People do ask funny questions when you’ve got a disability, and it helps to have a few of those funny answers handy when you need them.  But this girl talked about more serious stuff that is really true, things that make me a little nervous walking back into school this week.

Things like, the staring.  And I’ll probably get some funny questions too.  I’ll get new teachers who don’t know me and try to do everything for me, instead of letting me choose when I need help and when I don’t.  And I’ll get friends who get to know me so well that they forget about my disability, which is great, but then they run down the stairs ahead of me, never stopping to wait.

It’s all a big swampy mess of things and feelings that are harder to push through than say…hanging around the house this summer.  I’ll make it though.  No doubt.  In fact, I’m sure I’ll have a blast.  Just gotta get psyched up for it.

Post a comment, tell me about what went on for you when you started school this year.  I’d love to hear about it!

We see differences...

A new study in the journal Pediatrics delivers what may be surprising observations and conclusions.  The first thing that made me pause was that in the sample, 33% of the students surveyed had some form of special health care need.  For the past year, I’ve been presenting to students at elementary schools about disability and our attitudes toward it, using our book Arlene On the Scene as a launching point.  And I always jump right to it in the opening of my presentation: we do have attitudes toward disability.  Don’t try to deny it.  In fact, we have reactions and attitudes toward most differences, including disability.

The idea that in a group of students nearly one third could have a special health care need, which then generates these attitudes and reactions in those around them–well it’s no wonder that all this affects school performance.

And this is what researchers found out.  Having a special health care need, such as Charcot-Marie-Tooth disease or any other health issue, negatively impacts school performance.  That means lower grades, more absences, and less motivation to do well.  How much of that is the health care limitation itself, and how much is the lack of support from financially strapped school systems?  Or how much of that is because of our own attitudes toward disability?

The study also found that students with special health care needs were more often victims of bullying.  This surprised me, what with the War on Bullying launched recently, you’d think the teasing of kids with special needs would have been addressed.  But then again, maybe it isn’t so surprising.  An understanding of what it means to live in this world with a disability, an opening of the mind to the differences among us, the adjustment of attitudes and assumptions about disability–these are tough topics that just aren’t undertaken by our schools, given the hyperfocus on tests and stats.

But increasing awareness of disability, and of diseases like Charcot-Marie-Tooth, must be undertaken, if not by our schools then by us.  This new study is further proof of this.  We have a responsibility to our children to foster an understanding of diseases like Charcot-Marie-Tooth and the special health care needs that result.  Their future success depends on it.

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!)

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