Wednesday, May 15, 2013

Inspiration: Normalization

Who's to say this guy isn't normal?
     My son Silas is five years old and is just now learning to eat. A traumatic brain injury left Silas unable to swallow anything at all until quite recently. We are now nearly to the end of our three-week trial of feeding Silas everything by mouth. This is the first time in his life that Silas has not used a tube to give him his food.

     When I told my boys about Silas' three-week trial, Nate (like the adoring big brother he is) gasped, hugged Silas, and exclaimed, "Now you'll be normal!"

     A lot of progress has been made in "normalizing" disabilities. We have laws in place to prevent kids from discrimination. Our city is currently building a state of the art, fully accessible playground so that even children with wheelchairs can play, climb, swing, and have a blast. We celebrate the Special Olympics, we post buttons on our blogs raising special-needs awareness, and we have weeks of the year devoted to all kinds of syndromes, disorders, and diseases. Kids with disabilities are often integrated into mainstream classrooms in school and get to interact with their able-bodied peers. I am so thankful to be raising my tube-fed son in a world that is more tolerant, more gracious, and more accepting than it was when I was a child.

     Unfortunately, kids literature seems to be on the lagging end of the progressive movement to normalize disabilities. How many books can you name about kids with autism, or cerebral palsy, or a chromosomal abnormality? If your son has a feeding tube like mine, can you just walk into Barnes and Noble and ask for a book about a tube-fed child?

     When I started writing My Solar-Powered History series, I decided (at the last minute, actually) to give one of the characters a feeding tube. It's not a major part of the plot. The fact that one of the Otis boys has special needs is not the main focus of the book. It wouldn't even count as a sub-plot, in my opinion.

meet Benson
     But that's how I see my son Silas. I see a boy who plays the piano for several hours a day, who loves to write stories, who guffaws at his own jokes and has perfect comedic timing, who loves animals to a fault, and who happens to have a feeding tube. The character Benson in My Solar-Powered History series also enjoys music, also loves animals, and also happens to eat differently than most people.

     I see great promise for children these days who grow up with disabilities. And I hope that in some small way, my series about a boy who just happens to get his nourishment in a different way than us "normal" folks will help pave the way for further normalization of kids with disabilities in children's literature, and maybe make one or two other tube-fed kids like Silas very, very happy.

Random Fact #23: I spent about two weeks homeless after I graduated college and didn't know what to do once I was "all growed up."

Check It Out: What, No Sushi? (the first book in My Solar-Powered History series) is on sale now!

Blog Love: The Thursday's Children blog hop is a chance for authors to write about what inspires them. Thanks again to Rhiann Wynn-Nolet and Kristina Perez for hosting, and everyone else ... consider yourselves invited to join the blog hop fun!
    

22 comments:

  1. I agree that the world, or at least parts of it, are much more accepting and accommodating about people with differences. There are certainly still places where this is not at all the case. Check out the DiversifyYA blog, one of the founders has a great post about living with a difference and of course diversifying kid lit. Your son sounds awesome :)

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    1. Thanks Rhiann! Thankfully things across the board are becoming more inclusive, a least as I see it, but there's still room for growth for sure!

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  2. Wow, you and Silas inspire me and you know, I believe none of us are normal. We're all quirky-unique, reflections of God's sense of humor and his vast love and creativity.

    http://www.miaceleste.com/?p=323

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    1. Thanks Mia! So true... Like they say - Normal is just a setting on the dryer..

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  3. Silas sounds amazing - as does Nate. :) And I agree, I'd like to see more diversity in books, too. It seems there are far more for younger children than there are in the YA genre.

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    1. Good point about YA books, Chris! And yes, I have to admit my guys make me pretty proud. :)

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  4. I didn't do a search, but I think there are actually several books about people on the autistic spectrum. Mostly psychological thrillers, I think. The emphasis is not often on the person's everyday life, or how they experience a simple adventure differently than a "normal" person. It seems to be on some gift the child has that makes him or her valuable to bad guys and thus in need of rescuing, or something like that.

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    1. Yes, I've seen that theme in a movie or two.

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  5. This is a wonderful post. I totally agree that there needs to be more diversity of all kinds in YA. I was interviewed on the DiversifYA blog this week about ethnicity and you might want to get in touch with them. There's definitely too much pressure in society to be "normal" (which is, of course, a totally subjective label!) and we especially need younger readers to have role models that demonstrate that there's no one right way to be or do anything. Thanks for joining us! Kristina x

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    1. Hey Kristina, I'll go check out that blog. Sounds neat!

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  6. I love your description of Silas: a boy who makes himself laugh, plays the piano, writes, loves animals, oh and who happens to have a feeding tube. The focus can so often be on the person's disability rather than who they are. I think it's wonderful that you've included a character in your book who just happens to have a feeding tube. I think it's great for kids to learn about or be able to relate to a whole range of characters when they read a book.

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    1. Thank you, Kate! And you just happen to be a great writer that I just happen to enjoy seeing around the blogosphere. :)

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  7. So cool that your character has a g-tube! I am with you that the world needs more books like that and I am glad that you contribute to raise awareness with your novel! You rock!

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  8. Oh, and one more thing: I hope eating by mouth goes well for Silas? How is he doing? I am still so happy for you two about this major progress!

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    1. Hey Joy, thanks for catching up on the blog!! It's always so nice of you to pop over! Yes, eating is going really well for Silas. He lost some weight the first week so I was kinda nervous, but it looks like he's gained it back and then some. Isn't real butter great?! We see the dietician for followup on Thursday. Hope you're having a great weekend!

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    2. That sounds awesome!! Will keep my fingers crossed for a good follow-up appointment on Thursday! Have a wonderful weekend, too!

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  9. Awesome. I love that you've delegated the feeding tube to a "side note" rather than the "main plot", with both your character and Silas. A disability doesn't define a person any more than the color of their hair. I think society is slowly catching on to that, and diverse books will definitely help that along. Oh, and I love your boys' names!

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    1. Thanks so much Kate! I appreciate it!

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  10. The focus on a person should be on who s/he is, not what. Not even on how or how much... We worry too much about things that don't matter and not enough about the things that do... like that really gorgeous smile!

    Silas sounds like an absolutely amazing kid.

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  11. So true, Eden, and thanks for stopping by!

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  12. Normal? What is normal? I am autistic and I prefer twintails, cupcakes, and petticoats over crop tops and short shorts.

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