Arlene is on the SCENE

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

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!)

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.

We were incredibly moved by the voices of those living with Charcot-Marie-Tooth disease, as recorded by the New York Times Health Section.  We need to continue to raise our voices until everyone knows what CMT is, everyone understands the urgency, and we all join together to maximize the quality of life for people living with CMT.

Matthew Downing puts an orthopedic brace on the foot of his son Matthew, 5. Both have Charcot-Marie-Tooth, a progressive neurodegenerative disorder.

This post is by Marybeth Sidoti Caldarone, who helped write Arlene On the Scene.


“Are you happy?”

I’m never really sure how to answer that question. I guess it’s pretty relative. Happy to be alive? Sure. Happy to be blessed with a caring husband and two amazing children? Yes. Happy to have a good job and work with people I respect? Definitely. Happy to need assistance with 95% of all motor tasks that need to be carried out throughout my day? No. Happy to watch my daughter struggle with the same challenges I had at her age? No way. Happy to not be able to take care of my home and my family in a way that I would like to? Who would be?

Well, I can honestly say that I strive to be happy in life as often as possible, but as many of you may know, it’s not so easy to dodge the overwhelming feeling of never being able to “keep your head above water.” My approach is to be determined to keep pushing through and keep believing, really believing, that there is a purpose for everything. Chances are, that purpose won’t be obvious. You may never figure it out, so to have happiness or contentment, you really have to believe and, as a famous fish once said, “just keep swimming.”

Really, when you think about it, you have to find your happiness, and sometimes things can get in the way. If you pay attention, however, the moments will come. That’s right, I said moments. I’ve realized happiness often comes in the smallest detail. It may simply be found in a few words (“I love you”, “thank you”) or a kind action (a hug from your 15-year-old, the door held open when you least expect it).
So, instead of asking the question, “Are you happy?” maybe we should ask, “Have you had any happy moments today?”

I have.   How about you?

I wanted to write about our recent article in the Quadangles magazine, especially as we begin writing the sequel to Arlene On the Scene and get into this whole “helping/caretaking” issue.  In the article, I am described as offering help, or “ministrations,” to Marybeth while we were roommates in college.  Okay, that’s true.  But I’m afraid my point that this was as helpful to me as it was to  Marybeth might be written off as just another line in the caretaker’s script, just a standard demure response to the waterfall of gratitude.

The helping relationship is incredibly complicated.   I should know; I have lived it both personally with Marybeth and professionally as a social worker.  From the outside, it really does look like selflessness, pure human kindness, in essence a one-way street.  But I just don’t see it that way from in here.

There is incredible personal reward for those who help others.  It’s  just there, whether it stems from your religion, your value system, your personal moral code.  We’re a connected society, and when one reaches out to help another, that helper gets rewarded, usually directly and in the moment, as well as indirectly from others.  In a lot of these situations, the helper enjoys an increased sense of efficacy, self-worth, perhaps even…power?

When it comes to people living with disabilities, sometimes their life is stuffed to the brim with situations in which they need to ask for help.  Inherent within the “Can you help me?” can be “…because I can’t do it myself.”  And then of course, there’s the thanking of the person who has helped them.  Does this get old?  I really wonder what would be left of my own sense of efficacy, self-worth, and power if I were in that position.

As we advance our thinking about people living with disabilities, as we begin to embrace disabilities as differences that enhance the mosaic of our society, I think we also need to rethink the helping relationship.  Caretakers and those who offer help deserve every bit of gratitude, no doubt.  But when I think back to my college days, and I read the article in Quadangles, I’m sticking with my version of events: I benefited as much or more from those years as a caretaker, and I’d redo it again in a heartbeat.  Because I got something out of it too.

Who is helping who?  It’s a two-way street.

It’s CMT Awareness Week, Sept. 19-26!  Arlene has arrived on the scene just in time!

We feel strongly that Arlene on the Scene should be a part of this week.   Repost/retweet this to the CMT Awareness Week site.   It is time for the folks working on CMT issues to join forces and make things happen!

We thought Arlene might be the one to spark this collaboration among people dedicated to raising CMT awareness and supporting people living with CMT.   Perhaps that’s too much to ask of a nine year old (okay, fictional) girl.   So we’ll let the grown-ups take over.   Marybeth and I are looking forward to hearing about new team efforts!


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