On Wonder

I recently finished reading Wonder by R.J. Palacio aloud to my daughter, which might seem like a surprising choice to some since the book is, arguably, inspiration porn that perpetuates the idea that the people who look significantly different deserve accolades for simply existing and anyone who befriends such a person is a hero.

Frankly, that’s exactly why I chose to read it with her rather than let her find it on her own, which she likely would, considering how popular the book has become. This way we could take the story slowly to parse out what I see as the problematic elements of the story as we read. I have complicated feelings about this book as I expect that many other people in my position—people who are used to being stared at because they have a significantly different body—share. It isn’t easy to read about Auggie’s award for “bravery” at the end of the book when readers are well aware that he has done nothing to deserve it.  It really isn’t easy to watch Auggie accept the eventual popularity he gets at school, which is more condescending than it is kind. As I found reading with my daughter, these aren’t easy things to talk about either.

But in my world, it’s necessary to talk about them. I can’t tell you the number of times I have been given inordinate accolades or given apparent hero status for simply existing. Or how often my long-term partner has been seen as saintly for being with me. So when I read Wonder the first time, I read a book that portrayed ableism, especially internalized ableism, in a way that was painfully affecting and emotional. I admit, I thought it was obvious to readers that August should not have been given the award and that the mascot-like relationship he has with his peers at the end of the book was not healthy friendship. When I finished the book that first time, long before it was published, I was optimistic about the way that this book could share parts of my experience in a way that I hadn’t been able to communicate before.

Unfortunately, the book couldn’t seem to communicate it either. Or perhaps the message that I thought was there never really was. Even on re-reading it now, I’m not really sure. I still found it difficult to read at times in how realistic some of it was. The character of Miranda, in particular, felt real to me in the worst way. I have known people who feel like they deserve some sort of “credit” for befriending people who are different. I have known many, many people who feel that protecting people, the way that Miranda seeks to protect August, is love/kindness/friendship. I truly hope that no one finishes that book thinking that that’s what friendship is. That that’s what August wants from the people in his life. But I’m worried that that’s exactly what people have been getting from this book.

I love that the book has inspired so many people to Choose Kind. I only wonder if people are confusing being inspired by someone for being kind to them when the two actually have very little to do with each other. I love that the book created a place for my daughter and I to talk about healthy friendships, bravery, and other important but not often discussed topics.

I may not like the truths that this book captured about the way we treat people who are different, but that doesn’t make them any less true.  I don’t know that my thoughts about this book or about disability/ableism are fully formed or off base. Here is what I do know: one insensitive thought or action does not define you. Via isn’t a bad person for what she thinks about August. Jack isn’t evil for what he says about August. You aren’t a bad person for double-taking or staring at someone like August (or at me). You aren’t a bad person for being curious or expressing curiosity—even if you express it kind of rudely. That moment isn’t all there is. There is always more to the story. Kindness is being open to the stories you haven’t heard yet.

Choose kind, but know that sympathy isn’t kindness. Pity isn’t kindness. Special treatment isn’t kindness. Know that this book is mostly showing what not to do when it comes to kindness. For me, the book gets at a deeper truth than simply “choose kind.” It shows how the kind choice isn’t always obvious. And sometimes our instincts about kindness are wrong.

To close, here is Stella Young talking about inspiration porn:

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A Doll Like Me

dollslikemeI don’t think I would have appreciated a “doll like me” when I was young enough to play with dolls, but I still wish I had had one.

I occasionally saw toys that attempted to represent kids with differences on display at clinics.  There were dolls with hearing aids, stuffed animals wearing braces, and others.  I never saw any with a limb deficiency or a prosthesis like mine, and I was glad because I was mortified at the thought of my parents getting me a disability doll.

I’m not sure I gave it much thought at the time.  I was an introspective kid, but when it came to the toys I liked, I mostly went by feeling.  My feeling was pretty strong that I didn’t want anything “special.” I knew that I felt just like other kids.  I felt totally normal, and so I felt I should have the same toys from the same stores  as other kids.  Not special ordered through a clinic.

I didn’t want to talk about my arm or answer questions about it. Like most kids, I wanted to talk about the things I loved, the things made me me.  My physical difference felt like a distraction from the me I was inside.  Why would I want a toy that emphasized it?

I still understand those feelings, but I’ve thought a lot more about it in the years since I stopped playing with dolls.  I’ve considered issues of representation and identity as they relate to the media kids are consuming and the toys that kids are playing with on a much deeper level than I did when I was eight.  I’ve thought about what it means to have one’s identity erased from public view, and I’ve felt the thrill–yes, I do mean to use that strong of a word–of seeing a usually invisible part of myself represented in the media. Not to mention, I’ve had enough people say “That’s weird” when I say that I was born without an arm to know how important being visible really is.

It took me a long time to realize that I didn’t have to blend in or erase parts of myself to be considered normal.  I just had to move past the obstacle.  I’ve said before: sometimes talking about things makes them less of an issue.  That certainly has been the case for me.

It is because of my childhood feeling of wanting to avoid being special that I am excited about Toys Like Me.  I felt normal, and I wanted normal toys.  So let’s normalize me.  Let’s normalize all sorts of different bodies and experiences for our kids.  Makies, a company that makes customizable dolls, is taking suggestions.  What do you want to see?  Let them know.

Perhaps if I’d had a doll like me when I was a kid, I wouldn’t have spent so long trying to be invisible.

It’s Okay to Ask

its-ok-to-ask-thumbAsking is better than staring at me.  Asking is better than avoiding me.  Asking is better than making up something about me that isn’t true.  I have been saying these things for years–mostly assuring embarrassed parents that it’s okay that their child asked me about my prosthetic arm–but now I’m not alone.  In addition to the fantastic Jacob’s Eye Patch, now there is It’s Okay to Ask from Gillette Children’s Specialty Healthcare.  Two picture books and me all saying the same message will surely convince people, right? ;)

On MPR News, Tom Weber spoke with a Gillette doctor and a young patient about the book and their experiences talking about disabilities, and he expressed surprise that it was okay to ask about someone’s disability.  “Has that really been the thing we said about how we should interact?” he asked more than once.  The guests assured him that questions aren’t necessarily rude.  It’s the intent behind the questions that is either friendly or rude.  I found myself nodding along at what the guests were saying over and over again.

Here’s what I know about questions:

  • “What’s wrong with you?” is probably not the best question, but even if your child does ask it that way, it’s okay.  It’s a teachable moment.  Encourage them to rephrase it without making them feel bad for being curious.
  • Questions are better than assumptions, and the best questions assume the least.  “How did you lose your arm?” for example assumes I lost an arm, which I did not, but I understand that it isn’t always easy to come up with the best phrasing on the spot.  Don’t stress about the best way to put it.  It’s usually pretty clear when someone means a question nicely.
  • Equipment makes questions easier.  I get way more questions when I am wearing my prosthetic arm than when I go without it.  It seems people are usually more comfortable asking about a piece of technology than they are about a physical difference.

I offered more points to consider in this post on The Blogunteer back in 2012.  In that post, I said:

“It’s okay to be curious. That is probably the most important thing I want to tell people.  The key is how you express your curiosity.”
That is still true.  Questions are okay.  Even poorly worded questions are okay.  The important thing is that we move past staring at or avoiding people with disabilities or physical differences.  I’d rather have to answer an impolite question than always be Other.  As in the book It’s Okay to Ask, once we get past our differences, we can get to what we have in common.
Have a question about my limb difference or prosthetic arm?  See Fake Arm 101 for answers to some common questions or send me an email with some question I haven’t covered yet: fakearm101@gmail.com.

 

Thursday 3: Limb Difference Awareness Month

April is a busy month for awareness.  Autism, Sexual Assault, and Poetry are probably the most well known, but I would like to acknowledge Limb Loss/Difference Awareness Month for obvious reasons.

I am pleased to report that there are a growing number of books for young readers that feature characters with limb differences. Here are three books for young readers that I recommend for understanding what it’s like to lose a limb or be born with a limb difference.

LimbDifference

Dangerous by Shannon Hale is a science fiction novel about fighting aliens that features a heroine who was born with one arm.  She is awesome.  Read more of my thoughts about it here.

Red Butterfly by A. L. Sonnichsen is a middle grade verse novel I referenced in this post.  The main character in the story was born with only two fingers on one hand.

One-Handed Catch by M.J. Auch is about a boy who loses his hand in an accident.  I reviewed it more thoroughly here.

These books are great choices for middle schoolers.  I offer more great books that I think can be used to open up discussions about differences in this article in Book Links Magazine from 2011: Just Like You–Helping Young People Understand Disabilities Through Books.

How we tell our stories

redbutterflyI didn’t realize what Kara in Red Butterfly and  I had in common until I was twenty-five pages into the story when she describes her “one blunt hand” that she always keeps hidden in her sleeve.

I couldn’t help but think that when I finally write my own story, I hope it takes at least that long to get to describing my limb difference.  It may be the first thing that most people notice when they see me, but it doesn’t have to be the first part of my story or even the main part of my story.

It isn’t the main part of Kara’s story either.  Her story is about family and belonging and how messy and difficult those things can get.  I don’t have personal experience with Chinese culture or international adoption, so I can’t speak to those aspects of Kara’s story.  I can say that it was really nice to read about a limb difference that wasn’t a trauma, and I can happily report that Kara doesn’t struggle to do anything.  She rides a bike and does all sorts of other tasks that people would typically expect she couldn’t do.  Those things aren’t a big deal.

That, honestly, kind of warms my heart a little bit.

My story isn’t about trauma, and my only struggle is convincing people I’m not struggling.  It feels really good to see a middle grade novel that gets that.  I would recommend Red Butterfly to young readers (ages 10-12) who are interested in a thoughtful story written in lyrical verse.

More about me and my limb difference on Fake Arm 101.

My Day at School

I spent most of Monday in what felt like a sea of first graders.  I was at my daughter’s school for Parent Involvement Day, and as usual there were questions everywhere I turned.  I don’t exactly blend in.

In the lunch line, a little girl asked me if I was a pirate.  The look in her eyes and the tone of her voice told me she meant it nicely.  “I’m not,” I said with a smile. “But it looks like it, doesn’t it?  My hook is even cooler than a pirate’s though.  It opens up!”  She seemed suitably impressed.

Later one of the boys and I discussed some potential additions to my prosthetic arm after I’d explained to him how it worked.  He thought extendo-arm feature would be cool.  Super strength too.  I told him I hoped he would be the one to invent a prosthetic arm with super strength when he grew up.  He looked thoughtful as he said, “Yeah, I probably will.”

But it wasn’t all adorable. How is one supposed to respond to the child who repeatedly says, “You are scary.”? I still don’t know.  It would have been different if this child had seemed afraid, but he only seemed interested in drawing negative attention to me. There are only so many ways I can think of to say “I know I look different, but I’m really just like you.”  And some people won’t hear that message no matter how I say it.

wonder

The good news is that I’m not the only one saying it.

When I first read Wonder by R.J. Palacio, I wanted every kid I knew to read it.  It said what I’d been trying to say for years.  Auggie says in the book: “The only reason I’m not ordinary is that no one sees me that way.”  If you haven’t read it yet, give it a chance.  It may be message-driven (or what some have called “guidance counselor fiction“), but it’s a message to which I feel a strong connection.

jacobseyepatchI have mentioned Jacob’s Eye Patch on this blog before, but it bears mentioning again.  It is a great picture book for talking about differences.  I highly recommend it–and the activity kit–for it’s realistic look at curiosity and questions.  We always tell our kids not to mention anyone’s difference or ask any potentially embarrassing questions, but Jacob offers a “green light” to people who have questions about his eye patch.

My philosophy: When you can’t blend in, you might as well take questions.  It isn’t always comfortable.  But, as I often assure nervous parents whose children are about to ask me anything, I have heard it all, and I swear I’m not as scary as I look.

The difference a prosthetic can make

I am well aware that if I had been born in a different time or place my life would not be what it is.  I might point to my eyeglasses and reference my very poor unassisted vision as one way my life would have been quite different if I’d been born a few hundred years ago.  But I think that my prosthetic arm is the more obvious tie to the modern era that I rely on regularly.

I might argue that I can’t go without my glasses for more than a few minutes, and I can go without my fake arm for days if necessary, but the truth is that I don’t want to go without either.  There are plenty of one armed people who don’t use prosthetics– and most insurance companies will consider them cosmetic–but I can’t imagine my life without mine.

IMG_0140.JPGI wish I had a cool story like the girl in A Time to Dance who was able to live her dream of pursuing a career in dance even after losing her foot because of her prosthetic leg.  Yes, it’s fiction (teen fiction, to be specific), but there’s a real precedent there.  For Veda in the story, it is obvious how having a prosthetic leg changed her life.  It opened her to opportunities that were otherwise closed.  Sometimes I can forget that that’s possible.

My prosthesis is neither here nor there in my dreams, which revolve around books, libraries, and writing.  My story is nowhere near as dramatic as the usual inspirational novel.  And the truth is that if I’d never had a prosthetic arm, my life may very well be basically the same.

I have no idea what I would do with my hair without my prosthetic arm, but I’m sure I would have figured out something.

The real story is this: I have had my prosthetic arm since before I can remember.  It has always been a part of me.  I am not sure how much it has changed my life to have had it.  It simply is my life.  I could probably live without it if I had to, but I really don’t want to.  It does make my life much easier, and I definitely need it to put my hair in a pony tail.

My story isn’t an inspirational novel.  My story is set in a world where I haven’t had to consider “Ugly Laws” or other limitations.  I live after the Americans with Disabilities Act made accommodations available to those who needed them, and I’ve never need any anyway.  I was able to pursue whatever career I wanted, and I never had to worry if I would be barred from anything because of what I lacked.

I am very grateful that I live here and now. But even in the here and now, prosthetics are prohibitively expensive for many.

When I read stories like A Time to Dance, I am reminded of how powerful access to prosthetics can be, how it can truly change people’s lives.  I’ll never know how my life would be different without my prosthetic arm, if at all, but I am extremely grateful that my parents made it happen for me.  I would love to give someone else a chance to experience what prosthetics can do.  Perhaps it will be integral to their dream.  Or maybe it will be integral to their sense of identity.  Either way, I think it’s a worthy cause.

Consider a donation to the charity that made my prosthetic arms possible: Shriner’s Hospital for Children Twin Cities.  Or explore other options for limb deficient people who find that their insurance does not cover prosthetic devices or their repair such as Limbs for Life.

 

Note: This is not a sponsored post, and the book was a library copy.

 

A Bit of Reassurance

In general I tend to be ambivalent about art or social commentary that singles out people with disabilities or differences.  It isn’t easy to create a statement that doesn’t feel like pointing and staring.  So when I saw the news story about a fashion photographer “reframing beauty” by photographing people with genetic disorders, I steeled myself for mixed emotions.

Then I read this quote:

“It’s terrifying,” Guidotti said, “There’s other ways to present this. I’ve spoken to so many genetic counselors who have a family in front of them and say ‘Ok, this is what your daughter is going to have. Read this.’ And they cover up the photograph because it will freak the family right out.. There’s gotta be something else we can do. There’s gotta be another way to present that information to that family.”

And I wanted to cry.

I didn’t have parents in mind when I originally created Fake Arm 101, but they are why I have kept it online nearly ten years after first writing it.  I have gotten many, many emails from parents of young children who were born with one arm like I was.  These parents tell me they didn’t know anyone with a limb deficiency before their child was born.  They have no idea what a life looks like when you’re missing a limb from birth.  Then they find my FAQ, and they probably cry.

The heartfelt emails of gratitude have always meant a lot to me, but now that I have a child myself, I get it. There is so much uncertainty in being a new parent.  I can only imagine how much more intense that uncertainty feels when an unknown factor looms over your baby’s future.  Anything I can do to calm a new parent’s anxiety, I am happy to do.

This is me.  I’m pretty normal. :)

Picture 004

Please check out Positive Exposure.  This is the kind of project that makes me feel like we’re getting beyond pointing and staring.

You can buy the zine version of Fake Arm 101 in my zine shop.  This small DIY magazine is not at all the same as the online FAQ.  It is a look at some of the comments I have gotten about my arm and some thoughts on what it is like to be physically different.

May Book Pick: Formerly, Shark Girl by Kelly Bingham

formerlysharkgirlWhen I’m talking to people about my prosthetic arm, I am quick to point out that I was born this way and that I’ve been wearing a prosthesis since before I can remember.  Most people assume that there was some kind of accident and subsequent rehabilitation, and they often ask questions around that assumption.

Then since I’m a children’s librarian by trade, people will bring up Izzy Willy Nilly–a book in which a teenage girl loses a leg in a car accident–and I try to differentiate my experience from this classic teen novel that tends to be a lot of people’s only context for limb deficiency.  Izzy’s situation in the book is just as different to me as it is to anyone else.  There isn’t as much in common as you might think.  I’ve said those sentences many times over the years.

But, honestly… I’m kind of lying.  Well, let’s call it exaggerating.  I do have a few key commonalities with Izzy in that book and with Jane, the main character in my Book Pick for May, Formerly, Shark Girl.  Izzy, Jane, and I all live with a lot of assumptions about who we are and what our lives are like.  We are heroes or victims.  Inspirations or curiosities.  But we’d like to be more.

This is an uplifting novel about the big life decisions that will appeal to fans of realistic teen fiction, especially if you like novels in verse.  But it’s also an opportunity to challenge your assumptions about people who look different.

If you are curious about my story, you can check out Fake Arm 101 for answers to some frequently asked questions. You can also find more reading material on my list of books about various disability experiences.

Did you miss last month’s Book Pick?  Check it out: The Fairy Ring by Mary Losure.

Disclosure: This post contains affiliate links.  A portion of purchases made from these links may benefit Proper Noun Blog.  Thanks for your support! :)

Reading Hands Can with one hand

handscan2I am very pleased to say that Hands Can by Cheryl Willis Hudson is now available in paperback.  This picture book was first published ten years ago, and it has become a preschool favorite.  The bright colors, simple rhyme, and real-life photographs make it a good choice for 2-6 year-olds learning about their bodies and celebrating all the cool stuff they can do.  Not to mention it is great for talking about what it is like to have one hand with little kids.

That might seem like an odd thing to say because there are no one-handed kids in the book, but I have found this book to be a great jumping off point as I talk to kids because they tend to be most curious about the basics.   For example, these are real questions I have gotten from kids:

  • “How do you hug?”
  • “How do you put pajamas on?”
  • “Can you hold hands?”
A peek inside Hands Can

A peek inside Hands Can

Most adults can see obvious answers to these questions, but younger kids (under age 7 or so in my own personal experience) have a hard time working through these questions without guidance.  This is where Hands Can comes in.  I like to take each activity photographed in the book as a brainstorming session.  From the very first page with the little boy waving hello, I ask for other ways we say hello.  Kids can give creative answers.  After all, we might use our voice, our eyes, one hand, or maybe two if we are very excited.  I might demonstrate how I tie my shoes when we get to that page or have them come up with ways to accomplish other tasks with one hand or some other physical restriction for an exercise in problem solving.

In the spirit of answering questions about what I can do, I thought I would answer the one question that doesn’t really get asked: “Is there anything you can’t do with one hand?” Most people probably assume there are lots and lots of things I can’t do, but there are surprisingly few.  It took me a while to come up with these, but here are three things that are difficult (not impossible) to do with my prosthetic arm (and my work-arounds) :

  • Grinding pepper.  For a long time, I just bought ground pepper so that I didn’t have this problem, but my husband is a bit of a foodie who likes things like freshly ground pepper, which means that peppering my food becomes a much more difficult task than it had been in the past.  Usually I just ask for help, but I have been coveting the battery operated pepper grinder at my mother-in-law’s house.  Technology, for the win! 
  • Ziploc bags.  These are difficult because my prosthesis does not grip tightly enough to hold the bag while I am zipping it closed.  To get around this, I can secure the bag against something and zip.  In a pinch, I have been known to use my teeth.  It isn’t classy, but it gets to job done.
  • Headphones/ear muffs.  I can put on headphones or ear muffs well enough, but I feel like I look a little silly when I do it because my fake arm doesn’t bend all the way to my ear.  Fortunately, I really don’t use either of these things very often.  As you might imagine, I was an early adopter of ear buds.

For more information see my FAQ about my fake arm or this article in Book Links magazine about the books I use to talk about my disability.

Disclosure: This post contains affiliate links.  A portion of any purchases made from these links may benefit this blog.  Thanks for your support! :)