Arlene is on the SCENE

Posts Tagged ‘disability

Boy I wish I were announcing that Arlene On the Scene is about to made into a blockbuster motion picture!

Unfortunately…not yet!  I’ve had several students tell me recently that they have “connections”  to the industry and will put in a good word for me.  That’s terrific!  I think these kids really just want to see Plumpy rolling down the hill, flattening Joey and his buddies!  If you don’t know what I’m referring to, you really must read the book!  🙂

But we did make it to sunny CA.  Only to find it 20 degrees colder than on the east coast!  What gives?

I want to give a big shout-out to Dahlia Heights and Rockdale elementary schools for being such great audiences and great listeners.  It was so great to meet you!

Now, it’s on to Rhode Island.  Oh, you know I have to go back home again!  We’ll visit eight schools in RI in mid-April, talking to kids about differences, disability, and the power we have to change the world!

Check out our School Outreach Program: we’ll come to your school for free and donate a few copies of Arlene On the Scene for your library!  We discuss how it’s really our job, using our empathy skills, to create a safe place for all of us to be ourselves, our true selves, including difference, disability, whatever you bring to the group.  It’s all sponsored by the Hereditary Neuropathy Foundation to raise awareness of Charcot-Marie-Tooth, which is the condition that “Arlene” deals with.  Along with the more tricky issues that a fourth grader has to face: friends, teachers, homework, parents, big brothers…

A recent survey tells us that kids with autism are much more likely to be bullied.  The new movie, Bully, coming out this week will bring needed awareness to this important issue.  We hope to continue to contribute as much as we can to this awareness effort, school by school, student by student.

Let us know if we can come to meet you–contact us today!  We just need a few schools in the same general area, and we’ll be on our way!

I just saw this amazing video.  Take a look:

 

 

This ties in so much with our School Outreach Program.  So often we pretend we’re above stereotypes, that words like the R-word don’t matter, they don’t mean anything, that hey, I’m still a good person!  Guess what, it’s not about me or you.  It’s about people like Max.  Would we use that word directly to him?  Read his mom’s blog, get to know him.  I doubt you would.

I’ve heard the R-word myself spew from kids’ mouths at the playground, along with “gay” or “sped,” flung casually over toward a playmate like it was all a normal part of fun banter.  I think we need to make words like these sting the ears of our children, the same way it would sting the ears of the child who happens to be gay, or have an intellectual disability.  If we don’t address it, it only gets worse.  And then we’re part of the problem.

Same reason why I think consequences were justified over use of the C-word in reference to Jeremy Lin.  We have to be vigilant about our language.  Some say attacking the use of particular words doesn’t change anything; we have to address attitudes.  I disagree.  Words shape attitudes.  Research shows this, and frankly, I think we all know this.  It’s just hard to admit, because that would mean we’d have to change our ways.

I joined the campaign to end the use of the R-word.  I hope you will too!

I read a comment today written by someone with Charcot-Marie-Tooth, and it stuck with me.  She was trying to talk about the sense of loss she feels with each passing day that brings a little less movement, a little more pain, a little less independence.  The response to her was: it’s not “loss,” it’s change.

She didn’t agree, and went on to vividly articulate what this loss feels like.  Sure sounded like loss to me.  Problem is, she points out, that because of her own inner strength she figures out a way to cope with this loss, and then all of a sudden people admire and applaud.  She’s become an inspiration, and the loss is replaced by change, which I dare say is an effort to normalize it.  As the writer points out, until you have lived with your independence being slowly stolen from you, day in and day out, don’t label it, please.

Which brings me back to something my friend/co-author Marybeth and I have talked about a lot, something that I’ve dealt with often in my work and that I have talked about here.  We all seek to cope with life’s pitfalls, and in doing so we all try to find the silver lining.  Marybeth tells me, though, about the dark underneath that silver lining–the anger, the frustration, the disgust.  And she’s one of the most spiritual people I know.  It’s not about denying there’s a silver lining, or not acknowledging our blessings along with our burdens.  It’s about standing in the dark for a minute, for ourselves or with a friend.  Uncomfortable and frightening as it is, it serves a purpose.

I was talking with a young client of mine today.  He’s been in foster care a while and has had quite a difficult time of it in his eight short years.  “That’s cuz I’m bad,” he said.  “I’ll always be bad, everybody in my family is bad, we just bad people.”  The “You’re not bad!” response almost made it past my lips before I had enough sense to shut my mouth and wait a minute.  I paused as long as I could.  Just tried to sit in the dark a moment.  I asked him why he thought he was bad, and he went on to express his anger–no, make that pure rage–at me, the judge, the social worker, everyone that had anything to do with his situation.  And we sat in the dark some more.  And frankly, he seemed relieved.

Now, he’ll go on and continue to cope, continue to perform to the applause of all of us adult onlookers.  But I’m glad I followed him into the dark, just a few steps anyway.  That underside is indeed dark, scary, and probably lonely.  Those traveling it could probably use a little company, and not always just to be led out.

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.

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

The National Council on Disability (NCD), in a recent briefing paper, describes the compelling issue of bullying as it affects children with disabilities.  The NCD found that despite the significant personal and social impact that bullying has on both individuals with disabilities and on their peer group as a whole, this issue has been glossed over by educators and policy-makers alike.

Research clearly demonstrates that the inclusion of students with disabilities in the same school setting as their non-disabled peers benefits both groups.  These benefits can only be realized, however, when significant efforts are made to create what the NCD calls a “welcoming environment.”  The briefing paper outlines research demonstrating unequivocally that students with disabilities face more bullying than their non-disabled peers.

What can be done about this?  We believe that educational programs such as the one created by the Hereditary Neuropathy Foundation and the National CMT Resource Center can effectively address this issue by fostering a greater understanding, and more importantly, a connection, among students of all abilities.

Books like Arlene On the Scene attempt to bridge the gap by relating disability to any personal difference.  The character compares her disability to a wide range of differences: from not knowing how to ride a bike to a hidden musical talent.  As Arlene puts it, people are like a mosaic collage, and packaging your peers into a neat little box, with a single label slapped on the side, just doesn’t work.  People want to be recognized for all that they are, and any difference—race, culture, disability, disease—is a part of the human mosaic.

HNF and the National CMT Resource Center will continue to spread this message through free school presentations that offers a new way to look at disability and difference.  It is time to address the disparate impact of negative social behaviors like bullying by forging connections and understanding among school-age children and by developing attitudes that will create a more supportive environment for all.


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