Arlene is on the SCENE

Posts Tagged ‘disability

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!



Liu_RebelQueen_FrontIt’s almost here! The sequel to Arlene On the Scene will be available March 26th,  pretty much everywhere. If your bookstore doesn’t have it in stock, tell them they should order it! 🙂

Kids are always asking us, what will the sequel be about? Well, the story is about change: how to make it and how to take it. Arlene and her friends land in a heap of trouble when they try to lead a revolution to make Greenwood School more “green.” There are new characters: Mr. Goldberg, the new fifth grade teacher, and Arlene’s Uncle James, who is a little different, just like Arlene. Oh, and the really tough change is that Arlene and Lauren kind of “break up.”

amazon buy buttonBut if you ask me, this book is about something bigger than just these plot points. While the first book told the story of Arlene learning how her disability can be part of a positive and powerful vision of herself, the sequel is about Arlene unleashing that very power. This book is about how one person–one young person–make that one young person who happens to live with a disability–can indeed change the world. Thank you, Margaret Mead, for pointing this out.

Check out an excerpt from the book here. Get yourself a copy, and if you’re local or if I’m coming to your school soon, you know I’ll be happy to sign it for you, talk with you about what you thought of the story. My ideas come from real life, and the kids I’ve talked to during these past two years have driven the content of this book, from the Green Team at Olney Elementary, to the great essays written by students at the Charles E. Smith Jewish Day School, to my friends in my home state of Rhode Island: Kizirian Elementary, Washington Oaks Elementary, Narragansett Elementary–so many great ideas from all the kids I’ve met! I keep a treasure box of the thank-you letters and cards I receive from students, and every last one is in there. Just like we talk about when I visit your school, we are all so incredibly connected. I don’t give a speech; we have a conversation.

Don’t forget to keep us in mind for an author visit and presentation about disability and difference this semester. Just send me an email. And don’t forget to get your copy of Arlene, the Rebel Queen.

The art of rebellion lives on!

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.

Wow what a fun time we had recently at Fallsmead and Arcola Elementary Schools here in Montgomery County, MD. I spoke to over 300 students at each school and had a blast. At Fallsmead, many of the kids had read much of the book, so they were really into the story and character. I received amazing letters from them, with so many great questions for me! I’d love to answer them all, but I’ll answer the most important one: yes, I’ll come back as soon as the sequel is out. I have to drop off a copy for your library! Then I can answer any other questions you have. Don’t forget, you can always contact me here by email.

I have to send a special thank you to the student at Fallsmead who taped coins to her letter to be donated to find a cure for Charcot-Marie-Tooth disease. I gave that right to the Hereditary Neuropathy Foundation. Thank you so much!

At Arcola, the kids and I had a great time! Of course, I wished I had known it was pajama day! But it was great to meet all of you, with your great questions and enthusiasm for writing. You had great ideas for the sequel–and prequel! I can’t wait to come back and drop off a copy of the sequel in March. Let’s see if it meets your expectations!

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.

I often imagine the mixture of feelings we get when we’re off to do something new is like a stuffed backpack.  In there, you’ve got your excitement, your anticipation, and of course, your nervousness, maybe even a bit of fear.  I picture it as a backpack because your only choice is to pick up this big bubbling brew of feelings and hoist it onto your back, then push on forward.  I mean, what are you going to do, stay home?

(Well, sometimes we do stay home, don’t we? Sometimes we just say nah, I’d rather not risk it.)

But school leaves us no choice. We get pushed out the door for this one. And school offers such a mixture–fun, excitement, friends, learning new things, plus a lot of tricky situations that you’ve got to figure out. As Arlene experiences, there’s a whole lot of judgment going on within those school walls. It seems like this can be one of the hardest things about school, the feeling that everyone is watching you, forming opinions, judging.

I came across this great campaign, Everyone Matters. They issued a challenge: go 24 hours without a single judgment of another person. Think about it–not a single “Ew, what is she wearing?” or “He acts like a weirdo!” Nothing, not a single statement or thought that pegs someone with a label that you’ve decided fits them. A great way to practice how to be all the time. Nice idea for the first day of school.

This should make that backpack a little lighter.

I’m ready to edit!

I get this question at pretty much every school I visit: Will there be a sequel?

I LOVE this question, because it allows me to shout: Yes! Yes there will be!

I’m working on it now, as I said in the last post. Very hard work, this editing. But for me it’s fun. I get to let my imagination go wild!

The students at Charles E. Smith Jewish Day School in Maryland have offered up their help with the storyline for the sequel. Throughout the year, I heard great ideas from students, especially my buds at Washington Oak in Rhode Island (yes, I still have those scraps of paper you wrote your ideas on). But my friends at JDS actually wrote the first few chapters as a writing assignment!

Oh, they’re great, really great! So many ideas–talk about imaginations going wild! And I love all the cool stuff you put into your writing. I saw metaphors, imagery, hyperbole, just like we talked about. Many of your wrote about camp or the beach, with great details, proving that when you write what you know, it comes out very vivid! Some of you included other characters from the book too. Carlos made several surprising appearances. Some of you had Arlene falling in love (hmm, little early for that maybe? :)), and many showed Arlene in a real way dealing with her leg braces. You all certainly seem to understand the message of the book–gotta live it, but not let it take over everything!

I will gather all your papers and sit down at my computer to finish the sequel this summer, I promise! Stay tuned right here for some sneak peaks early next fall.

To my friends at JDS–thanks for all your ideas and hard work! Keep my email and write me! Let me know how your summers go and what’s happening next year. I’d love to come back and see you!

Feels like school’s basically out already for the summer, doesn’t it? In our house it does! It’s sunny and 90 degrees here in Washington, DC! So I thought it was a good time to wrap up the second year of our School Outreach Program, see how we did.

Well, we certainly hit our goals! The first year we visited 23 schools, and this year it was 30. And we ventured off the east coast! We went to Los Angeles and had a great time there. We spoke to 4000 students in all, talking about important issues, such as disability, self-image, the value of diversity, and the power of writing. With each presentation, students and teachers learn about Charcot-Marie-Tooth and the mission of the Hereditary Neuropathy Foundation to support those living with CMT. And with each presentation, we highlight the importance of empathy, true understanding of each other’s strengths and needs, so that our classrooms can be bully-free and comfortable places for kids to let their true selves shine.

We ended this fantastic year with a visit to a great school nearby, Olney Elementary. There we encountered something that made us think of foreshadowing. All you third, fourth and fifth graders reading this, if you don’t know what that is, go look it up before you read on. [Insert my lame attempt to whistle…] You done? Ok, yes, foreshadowing. At Olney, we met this great group of kids who call themselves the Recycle Rangers…

Carol got to meet Olney Elementary School’s Recycle Rangers!

…and this made us think about foreshadowing (when an author gives you hints about what’s coming later in the plot). Turns out one of the main parts of the sequel to Arlene On the Scene is that Arlene and her friends start a recycling group at her school, just like Olney Elementary’s Recycle Rangers. So we asked them lots of questions. Authors have to do their research, even when writing fiction!

The sequel is our summer project. We’ve finished a draft, but as anyone who has seen our presentation knows, now the real work begins–the editing! Yes, this will take a while, but hopefully we’ll be able to get the sequel out sometime next year. Working title [insert drumroll]: Arlene, the Rebel Queen. Please, comment away! Olney kids gave it a thumbs up, but tell us honestly–does it grab you?

And don’t forget to contact us and get on the schedule for next year! Presentations are completely free of charge, thanks to the support of the Hereditary Neuropathy Foundation, and we also donate copies of the book to the library of each school we visit. We’re only limited by the challenges of time and geography, so just let us know and we’ll try to work out a trip to your local school!

It was good to go home again. It really was. Growing up in Rhode Island was special. I didn’t appreciate it, like most things, until after it was over. (Why does it always work like that?)

But this is why we set the book in Rhode Island, to kind of re-live it. And this is why we keep coming back.

We visited nine schools in three days–what fun! Providence, Coventry, West Warwick, Narragansett, and Wakefield were all on the schedule. The best part: the “real” Arlene came with us! That’s right, Grace Caldarone stole the show at Kizirian, GJ West, Carnevale, and Narragansett elementary schools. We were so happy to have her with us!

Now that I’m home for a few, caught my breath, did my laundry, all that…I have a few things to say to my new friends.

To the kids at Pleasant View ES–let’s keep up the challenge! They dared me to come up with a funny story about a grain of rice. I double-dare you to write a poem about…hmm…this piece of toast that I half finished for breakfast this morning. Go! Write! Email it to me and maybe we put it on the site!

To my friends at Kizirian–can I come back again for the third time next year? You are all fantastic! Please write me at the link above–let’s keep talking!

Students at Narragansett ES–why didn’t anybody tell me it was “wear your sports jersey day?” I would have brought my Capitals shirt. What’s that? Bruins are ahead 2 games to 1? Well, it’s not over yet!!

Okay, you know I would get to you, fifth graders at Washington Oaks ES. (Yes, that means you too, Aidan!) I know you’re on spring break right now, but it’s the perfect time to start writing! I’d love to see your work, and email me more of your ideas for the sequel!

All in all, it was a fantastic trip. I have visited schools from Washington, DC to Los Angeles this year, and as they say, there is just no place like home.

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