Arlene is on the SCENE

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

mermaid coverI had the honor to interview author Tony Seymour, whose wonderful book The Mermaid in the Gherkin Jar tells the story of Christopher, an eight year old boy living with cerebral palsy, and his relationship with a feisty mermaid, Azalea.  Like the Arlene series, Mermaid explores what it’s like to grow up with a so-called “disability,” but it does so through an engaging story filled with identifiable characters, a great plot, and plenty of humor. At the same time, Mermaid raises issues in a refreshingly honest way. No tip-toeing around here. Tony does a great job of exploring a range of reactions to living with a disability, from the main characters to the friends, family and teachers who surround them–or as he puts it, “the psychology of disability.” Read more below!

I really enjoyed this book and encourage others to check it out! It is available in Kindle format from Amazon.

What do you hope readers gain from reading your book?

First and foremost, I just want people to really enjoy the book. It would be great to think that kids really get into it and are entertained by it. If they pick up on the lessons or morals within the story, then that’s a wonderful bonus, but before any story can do that it must be convincing and grab the reader’s attention!

Why a mermaid? Why not a genie, troll, ghost?

Why not a troll indeed?! Don’t ask Azalea that! I was fascinated by the idea of mermaids as a child. I really did used to think (or wanted to believe) that mermaids lived in gherkin jars! There is an enchantingly mysterious side to the mermaid myth that I wanted to develop with Azalea. There is her mischievous, playful side, which draws Christopher to her at first. But there is her darker side that runs just below the surface that unnerves him. She is a siren of the sea, after all. You never quite know where you are with Azalea. And that’s what I like about her. She’s unpredictable.

What drew you to writing, and to writing children’s books rather than adult novels?

I’ve always loved writing. It’s one of the few things that really came naturally. The power to entertain or move someone through a good story is a wonderful thing! I prefer writing children’s books as I like all my stories to contain an element of fantasy. With children’s stories, you can really let your imagination off the leash. It’s a place where nothing is impossible and anything can happen. I have a few ideas for some adult novels, but even those will contain a good helping of fantasy. I think we all get a good dose of real life as it is!

What connections are there between your “real life” and your writing? Have you met a mermaid?

Have I met a mermaid? Well, of course I have! Honestly!

In the ‘Mermaid in The Gherkin Jar’, I think it’s fair to say that there is a strong link between the story and real life. Christopher represents where I was when I was a young lad growing up. I was aware that my cerebral palsy made me different and I did get a bit of name-calling at school, but on the whole I have happy memories of my childhood.

Azalea on the other hand is more a reflection of where I was as a teenager. I think you become horribly self aware at that period in your life. And if you have something that marks you out as different it can be exaggerated ten fold. In my mind Azalea behaves like a moody seventeen year old. She pretends to mock everyone else. She says she is proud to be different, but in many ways she just wants to fit in. I remember feeling like that at times as a teenager. Azalea is an outsider and quite a tough cookie. She’s been through a lot. But I think, sometimes, what she needs is just a big hug.


Lord Byron

Azalea also characterizes what I find so fascinating about the psychology of disability, especially the amazing levels of determination displayed by some disabled people. When I was a teenager, I read a biography on Lord Byron by Fiona McCarthy. As you probably know, Byron had a deformed foot, a disability which marked him out (in his eyes at least) as a freak. As well as his poems, he also wrote a number of plays. One of these was called “The Deformed Transformed.” In it, the hero, Arnold, is a cruelly deformed creature who is made an outcast by his own mother. There is one passage in the play which really stuck in my mind. It goes like this:

 “…Deformity is daring.

deformed transformedIt is its essence to o’ertake mankind

By heart and soul, and make itself the equal-

Aye, the superior of the rest. There is

A spur in its halt movements, to become

All that the others cannot, in such things

As still are free to both, to compensate

For stepdame Nature’s avarice at first…”

I thought this was fascinating and wanted to use it in the book. Azalea’s words echo those of Arnold, when she says:

“Differences like yours and mine are nothing to be ashamed of, Christopher…They are not weaknesses, but strengths, spurring us on, driving us further than the rest…”

There are many differences between Arnold and Azalea. Arnold does, for a start exchange his disabled form with the ‘dark stranger’ in Byron’s play for a supposedly perfect physique – something which Azalea would never do! But the words spoken by Arnold are very powerful and I felt they encapsulated Azalea’s character very well.

Is this your first book? Will you be writing others?

My first one that I’ve finished properly, yes. I want to write others – my intention was to make The Mermaid in The Gherkin Jar into a trilogy, provided the feedback on the first one is good. I also want to put a book of short stories together.

What helps you in the writing process? Coffee? Classical music? Sitting by a lake looking for mermaids?

Lots of coffee, yes… and cups of tea. I write straight onto my laptop and tend to work in silence. Though I may well have the odd break where I play some inspirational music: American Anthems I and II as well as some real power ballads from the ’80s to drive me on.

Anything else you want readers to know?

I’d really love to adapt the book and make it into a musical play. My Mum trained as a classical concert pianist and has written ten pieces of music already to accompany the story and the characters. I have another friend who’s a professional dancer who said she wanted help also. But it’s a long road! For the the moment, I just hope people will read it and enjoy it!



We Don’t See Racism? | Teaching Tolerance.  This is a great post from a great project of the Southern Poverty Law Center. If you don’t already receive their newsletter, you might want to sign up, especially teachers and others who work with children. They offer incredible resources for teaching children about appreciation of the beautiful mosaic that is our world today.

This post gets at one of the fundamental challenges to opening our minds. Sometimes we don’t even see the problem, don’t even recognize racism. I grew up in a small, pretty homogeneous town. Once I moved away to the Big Apple, I had a shocking revelation: yes, I had a whole bunch of biases within me, attitudes that would be called out as pure racism in most circles. I really had no idea.

Oh, give me a break, some might say. How could you have no idea?

I wouldn’t believe it if I hadn’t experienced it myself. The first step to opening my mind was to admit it was closed to begin with. This is often the first hurdle to changing attitudes about race, religion, culture, disability. So many think they’ve arrived, they’re advanced in their thinking, it’s only those “other people” who are racist.

But we need to learn to recognize it and teach our children to do the same. How else will we eliminate it?

Maybe the word racism is just too strong, too loaded for people to bear. My son relayed this story to me yesterday, and asked, “Was this racist?”

Teacher was changing kids’ seats, getting ready for some activity in which he needed students arranged in the classroom differently.

Teacher: “Oh, look. I’ve got all my Indian kids in one row!”

Student: “Um, I’m not Indian. I’m from Pakistan.”

Teacher: “Ah, well, close enough.”

I looked at my son. Racist? Well…certainly doesn’t seem like an appropriate thing to say. Imagine: Oh, look, all my Italians in a row! Um, I’m from Greece. Ah, well, close enough.

As tough as it is to go there, I think we need to. Isn’t it racism for a teacher to label a group of children by their race? Within an activity that had nothing to do with race or even close to it? And even when you get it wrong, you stick to your erroneous, race-based label? We can’t possibly think that attitudes will change without our recognition of the problem.

Teaching Tolerance also reminds us that there is probably no finish line. Learning about others and learning to appreciate what they bring to the table is a life-long process.

There is a movement afoot to make disability rights and disability history part of the standard curriculum. I just came across an e-petition that is making its way around the United Kingdom. California recently passed the Fair Education Act which requires the history curriculum to include contributions made by people with disabilities. As with other minority groups who are sometimes misunderstood and mistreated by the majority, teaching everyone about the history of all groups will only enhance understanding and respect.

And Marybeth and I were thinking the same thing! As you’ve read in previous posts, we’re currently editing the sequel to Arlene On the Scene. It should be available next spring (we’ll keep you posted!). One of the things we wanted to include in this book is a taste of disability rights history, so that students will be encouraged to research this topic and learn more.

Check out the sneak peek from Arlene, Rebel Queen below! (It’s unedited; please excuse any mistakes!)

Here’s the background: Arlene and her classmates were assigned a project in which they had to research a law that changed our country. Arlene read about the Americans With Disabilities Act. Of course, for her report, she did things a little differently. You know how Arlene loves to rap…

But first, after lunch, it was time for Jessie and me to do our presentation thing.  And my thing is poetry.

I smiled at the class, then went right into it.  By the end, they were all clapping out a beat for me!

“Let me tell you ‘bout a girl named Jennifer Keelan

You know she can’t walk, she got around by wheelin’

She made the prez and politicians feel a funny feelin’

When they watched her climb a hundred steps, all while kneelin’

At the top she gave a paper to some pol-i-ticians

Saying we got rights in spite of a disease or condition

Her picture made the papers, but in the late edition

And she forced the president to make a quick decision

Before the ADA was passed, it was a-okay

To treat disabled folks like they should just be locked away

But now malls, halls, clubs, buses, and cafes

Have to open up the doors that once blocked our way.

The words ‘We the People’ aren’t a mystery

We have rights, freedom and of course, liberty.

By making civil rights include disability

The ADA marked its rightful place in history.”


Service dog, “Chili”

I just saw an article about a student in Texas who was told she would no longer be allowed to bring her service animal to school.  While the Americans With Disabilities Act requires service animals to be allowed into public and governmental facilities, new regulations in March 2011 clarified the definition of “service animal.”

Well, attempted to clarify the definition. I would say the definition is still a bit vague.

The new regulations state that “dogs whose sole function is to provide comfort or emotional support” are not service animals under the ADA; however, the regulations also give an example of a service animal who “calms a person with Post Traumatic Stress Disorder during an anxiety attack.” Hmm. Sounds like “comfort and emotional support” might indeed be part of a service animal’s function.

In the Texas case, Chili helps the student stay calm during anxiety-provoking situations, anxiety that is caused by her disability.  My confusion lies in the Justice Department’s dismissal of providing “comfort” as a legitimate task of service animals. For kids living with disabilities such as autism, anxiety disorder, or mood disorder, comfort and emotional support is precisely the service they need to function in the classroom. Would the school rather employ a para-educator full-time to provide this support?


The power of animals is vast. My own former pup, Jasmine, greatest dog ever (I’m covering the eyes of my own two mutts lounging by my desk) was amazing in the classroom. She helped during therapeutic groups and in individual sessions with children who needed to work on attachment, empathy, and self-regulation.

Maybe the Department of Justice needs to clarify a bit more. If someone has a disability affecting their emotional and/or mental state, and the animal helps to address that need, sounds like a service animal to me.

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.

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.


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