How to Not Talk About Disabilities

Some of you may have heard that us Fringy Boormans were out in DC recently, with varying degrees of tourism success.  One of the highlights was mere moments after our Lincoln Memorial Meltdown, when we toured the FDR Memorial at dusk.  I’m not much of a history buff, and while I knew the basics of the FDR Presidency, I hadn’t really spent much time reading his words or reflecting on his philosophies.  Even less had I reflected on the ins and outs of his presidency from a wheelchair.

As we were standing at the memorial, looking at his wheelchair-bound statue, I read the words from his wife, Eleanor Roosevelt, “Franklin's illness...gave him strength and courage he had not had before. He had to think out the fundamentals of living and learn the greatest of all lessons - infinite patience and never-ending persistence."  At that moment, I could relate to FDR, his wife, and every other differently abled person in an entirely different way.  Yes.  This is it. 

Parenting an autism-y child has also forced me to “think out the fundamentals of living” and learn “infinite patience and never-ending persistence.”  It is a lesson that I did not know before my daughter was born, and it is a lesson that I really only know from the coach’s bench.  My daughter is the one who is truly learning persistence and patience.  And in that moment, I felt an awe and a kinship for everyone else who has been forced to learn these lessons.  And I felt a burgeoning interest in learning more about this man and his wife, as well as an inspiration from his persistence.

Prior to this visit, I never had given pause to consider FDR’s differences as he led the country through some pretty tumultuous times.  In fact, his being wheelchair bound isn’t the first thing I think about when I hear the name Roosevelt.  I think about all the leadership and changes and the 4 terms.  And with that realization, I admired him and his legacy writers all the more.

One thing that has always irked me about our society is how we subliminally emphasize, or even patronize, difference while we are supposedly encouraging acceptance.  Take for example the reality tv show The Amazing Race.  A few years ago they had a contestant on the Autism Spectrum.  On the one hand, they were saying, “see, someone with Autism can do anything anyone else can”.  On the other hand, they pointed out that he had autism every time he was on the screen and found it so amazing that someone with autism could handle the Amazing Race.  I am certainly not trying to downplay his accomplishment being on the show (just the thought of my daughter trying to handle all those transitions makes me break out in hives), but if we truly encouraged acceptance, he wouldn’t be known as the Autistic Contestant, he’d simply be a contestant.

Or look at most children’s books pertaining to disability.  They predominantly highlight the disability.  They talk about it.  They answer questions.  They show that people with a disability are still just people.  And that’s all well and good.  There certainly need to be those teaching moments and advocating.  We certainly do not live in a world filled with acceptance of difference, so sometimes, and maybe even most times, we need to directly talk about it.  But, sometimes, I want to see a person with a disability just be another person in the book.  Without throwing the disability in the spotlight.  I want the muppet with autism to simply be the new muppet on the street.

And this, above all else, is why I loved reading “Stuck in the Mud” to Kbear and Chimp.  “Stuck in the Mud” is a children’s book written by Simon Calcavecchia, in which a dachshund named Frank gets stuck as his doggy wheelchair has difficulty navigating through some tough terrain.  His little bird friend, Mustard, along with Mustard’s recruits, help him out.  Not once in this book, was Frank’s wheelchair or missing hind legs talked about.  He simply is Frank.  End of story.  Without spelling it out, kids see that life in a wheelchair can bring some difficulties that people without adaptive equipment don’t need to think about. 

Even the discussion questions provided at the end don’t explicitly discuss disabilities or differences.  They simply ask relatable, critical thinking questions to build empathy and introspective awareness.  And, the fact that these questions are even there, is another thing I love about this book.  It sparked a fantastic conversation between myself, KBear, and Chimp.  And Kbear was able to draw the connections between Frank getting stuck and how she feels stuck with her own “wiring” or big emotions sometimes.

If Eleanor Roosevelt was right, and “the greatest of all lessons is infinite patience and never-ending persistence”, well, that is exactly what this book aims to teach.  Its emphasis isn’t on Frank’s disability, but on how he and his friends faced adversity, with patience and persistence.

Before I make this book sound too serious and teachable-moment-y, know that we giggled throughout the whole thing.  All three of us.  We were shouting, “Heave-ho!” all together as Frank’s friends tried to pull him out.  When I asked for KBear’s opinion of the book, she said, “It reminds me of Elephant and Piggy!”  And she’s right.  It feels very Mo-Willems-esque, with bright colorful artwork (thanks to Arturo Alvarez), speech bubbles, and fun humor.

Am I really comparing a children’s book series to Franklin Delano Roosevelt?  No.  12 years as president through the Great Depression and World War II probably exists on a different playing field than a lesson-filled, cute, entertaining, and meaningful kids’ book.  But, if FDR’s greatest lessons were patience and persistence, maybe they’re more connected than at first glance. . . and . . . they are both named Frank . . .  

Frank and Mustard also have their own hip hop cd, facebook page and youtube channel, where you can watch their adventures and listen to their songs.  Their creator, Simon Calcavecchia, knows first-hand what it’s like to learn patience and persistence after he left a rugby pitch injured with c5/6 quadriplegia.  He now travels to different schools promoting disability awareness and inspiring kids to live up to their full potential.  Learn more at the Frank and Mustard facebook page or youtube channel.

Simon was kind enough to provide the Fringy Bit with a copy of his book and CD for review.  It’s important to note, however, that all opinions are solely my own and the Fringy Bit only shares things we’d read and use with our own families.