“This might seem rude, but…”

uglyI have talked a lot on this blog about acknowledging differences and asking questions. I was thinking about that as I read Ugly by Robert Hoge, a memoir for kids about Hoge’s experience growing up with a facial deformity. This passage, in particular, stood out to me:

“Some of the best talks I have ever had started with someone asking, ‘This might seem rude, but can I ask about your face/nose/scars/bumps?’ Wherever those conversations ended up, they started as honest exchanges. Acknowledging someone’s differences can be about saying you’re not scared to talk to someone about the things that make them who they are.”

A lot of kids have been afraid of me in my life. When I was a kid, it was confusing to have my peers be afraid of my prosthesis or of my little arm. I wasn’t scary, was I? As an adult, I understand why it might be surprising, uncomfortable, or even frightening for a kid to see someone like me. And I go out of my way to be approachable, to be unscary. I’ll never look just like everyone else, and I’m okay with that.

I promise: I’d much rather be asked a rude question than have someone be afraid of me.

Robert Hoge’s memoir shares his journey to being okay with how he looked. It can be hard to read about how his mother initially rejected him, about the taunts he received from other kids, and about being perceived as ugly, but I hope readers, young and old, come away knowing that they don’t have to be afraid of someone who looks different. They can ask honest questions. That it is possible to be comfortable with what you look like even when you stand out.

You can listen to Hoge talk more about how important it is to be comfortable with how you look in his TEDx Talk:

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The Audience

sharkgirlShark Girl by Kelly Bingham is at once My Story and Not My Story. When I first read the book back in 2007, I focused on how much the story felt like mine. It’s true that I did not lose my arm in an animal attack, that I never had to re-learn how to do tasks one-handed, and that I don’t know anything about recovering from such a life altering event. But that wasn’t all there was to the story.

There was also Jane’s desire to live her life without an audience. She doesn’t want to be a hero or an interview subject. She doesn’t want eyes on her as she figures out how to do what she needs to do. But she quickly learns what I have known for a long time: amputees cannot avoid an audience. In his memoir We Should Hang Out Sometime Josh Sundquist said, “That’s what it means to be an amputee: You’re always putting on a show.” He’s right.

The audience might be a quick double take or a curious stare. It might be unnecessary assistance or an admiring gaze. The worst, in my opinion, are the apologetic audiences. The I’m-so-sorry-I-didn’t-realizes at offering the wrong hand to shake and other awkward moments are the story of my life.

In the book Jane gets letters from people who saw her story on the news. She struggles with the idea that she isn’t herself anymore. She is Shark Girl. That’s all people will ever see. I may not have a story like hers, but I do know how it feels to think that you’ll never be able to get beyond what people see. Jane put it this way:

“Missing an arm is like wearing a coat,

a really big, hot, ugly coat

that I can’t take off.

Ever.

It’s all that people see.”

Every amputee deals with the audience in their own way, I suppose. Sundquist, who had his leg amputated as a child, became a motivational speaker, exactly what Jane in the novel declares she will never be. It took me a while to figure out how I felt comfortable taking on the audience, but eventually I decided to lean in to it. As a teenager I would avoid eye contact with the starers or do something to purposely put them off guard if I thought they were being rude. Though that might have been easier or more gratifying in the moment, I realized that I wasn’t getting anywhere and I didn’t feel good about it. So I started seeking eye contact, answering questions, and sharing more about what it means to be me.

Much like Jane in the novel, I don’t appreciate an audience when I’m figuring out how to one-hand-hack a task I’ve never done before, but honestly, if you want to watch me tie my shoes, I really don’t mind. I’ve tied my shoes enough times in my life that I am completely fine with an audience.

Crocodile Stories

It seems to be a general rule that every story in which an amputee character gets any page time at all will also feature a crocodile. Or maybe a shark or a tiger. It doesn’t matter what wild animal one chooses, and it doesn’t matter what the truth of the story is. What matters is surprising people.

No one expects much from a less than fully limbed person, and I can speak from personal experience when I say that it can be rather draining to live a life in which people don’t expect you to be able to tie your own shoes or do much of anything for yourself. I surprise people on a near daily basis by my ability to accomplish the most basic of tasks.  In a world of such constant underestimation, there is an almost irresistible pull to really surprise people, to shock them into considering their assumptions, to change the story they’ve told themselves. That’s where the wild animals come in.  No one ever expects a crocodile.

While it is perhaps something of a cliche for an amputee character to make up some wild story about their limb loss, I can’t deny that it happens. I laughed when I read  the scene in A Time to Dance when Veda responds to rude people with a crocodile story. I’d have done much the same if I were her. I did much the same many times as a teen. I am, and always have been, happy to answer questions asked kindly, but there was a time in my youth when rude questions, comments, or staring were almost certainly answered rudely or with a crocodile story intended to shut down the conversation by surprising people.

In The Doldrums, Adelaide tells a crocodiledoldrums story with the words “chewed it clean off” when a man stares at her prosthetic leg. The man is so surprised he leaves the cafe without his coffee.  Later she finds that the story works initially with the other kids at her new school, but it quickly gets out of hand.  A word of advice: if your goal is to shut down the conversation, a crocodile story will only work with adults.  Kids will just be more interested and probably call you “crocodile girl.” That is exactly what happens to Adelaide. It isn’t exactly a winning strategy for getting people to leave you alone, and it definitely won’t make you any friends.

However, I have found that it is often the people who don’t react quite like everyone else who make the best of friends.  Adelaide’s crocodile story makes Archer, a wannabe adventurer, jealous. “It’s an odd thing to be jealous of a girl whose leg was eaten by a crocodile. Few people would be jealous of that. But Archer was few people. And it wasn’t so much the loss of a limb as it was the entire story.” That, of course, is the beginning of a real friendship, or at least, it becomes a real friendship when they eventually get past Adelaide’s story and Archer’s jealousy.

It has been a very long time since I told a crocodile story about myself. These days I am much more focused on keeping the conversation open, but there are times when I am tempted. Especially considering the real story of my limb difference is so boring. Of course, I’ve learned that the boring story is the most unexpected of all.  The truth is, I’ve gotten so much more surprise from “I was born this way” than I ever did from any wild animal story I told as a kid.

 

What YA Needs

Back in July, the #YANeedsMore hashtag turned my Twitter feed into a wish list of what librarians, readers, and book people wanted to see published for teens.  I’ve been thinking about it, and I want to add my own. YA needs more congenital disabilities.

Let me put it another way. YA does not need any more stories about tragic accidents or illnesses that affect the protagonists’ ability to do what they love most.  A few examples:

  • A runner loses a leg in The Running Dream by Wendelin Van Draanen.
  • A dancer loses a leg in A Time to Dance by Padma Venkatramen.
  • An artist loses her drawing arm in Shark Girl by Kelly Bingham.

I like all of these books and recommend them often, but I want to tell future YA writers: this story has been told.  Let’s tell a new story.  Some people have had physical differences our whole lives.  Perhaps that could be a story, and I can tell you from experience that story isn’t a tragic one.

How to ask a question

Questions are a big part of my life.  Not only am I a librarian, a career that has a particular focus on helping people answer questions, but also I’m a person with a visible physical difference–not to mention the assistive device I wear.  I live with curiosity, and I’ve decided to encourage it.

its-ok-to-ask-thumbIf you’ve been reading this blog for a while, this isn’t news.  I’ve talked a lot about the questions people ask and the way that I answer them.  Here are just a few posts on the topic:

  • It’s Okay to Ask – Features a new picture book that encourages young kids to feel comfortable asking about disabilities and see beyond them.
  • My Day at School – Reflections on not being able to blend in when I visit my daughter’s classroom for the day.
  • Storytime Reflections – I was a special guest at a storytime at a public library, and I got some great questions from the kids and parents in the audience.

I have gotten questions of all sorts.  Some quite rude, most just hesitant and awkward.  I answer them all as best I can.  Not long ago, though, a little girl asked me about my prosthetic arm in the nicest way possible, and I just had to share.  She said, “I like your arm.  Can you tell me about it?”

It doesn’t get better than that. :)

Speaking of pirates…

While I am on the subject of pirates, which I referenced in this post, I’d like to bring up the only one-handed fictional character everyone knows: Captain Hook.  I spent most of my life really hating that guy.  You can imagine why.  It’s not easy having something so obvious in common with a terrible villain, especially as a kid.

I had to re-evaluate my anti-Captain Hook stance (a little) when my daughter started watching “Jake and the Never Land Pirates.”  In the show, Captain Hook is not only a villain but also a bumbling oaf.  It was hardly an improvement.  But as I watched, I noticed something.  He might have been a bad guy and a stupid guy, but he was never helpless because of his lack of an arm.  The show never, that I saw, had him struggling as a one-handed person.  He struggled with bad decisions and was defeated fair and square by the good pirates.  I’m still not crazy about the whole disability = villain trope, but at least it doesn’t equal helpless.  I think that’s a win.

In my new-found not-hatred for Captain Hook, I happened to read a couple of interesting books recently:

  • aliashookAlias Hook by Lisa Jensen is a re-imagining of the Peter Pan story.  In the book, Captain Hook isn’t the villain at all.  He’s a tragic hero who may be able to find a happy ending after all.  It’s part-historical novel, part-fairy tale fantasy, and an odd sort of coming-of-age novel.  There’s also a romance, which I appreciated.  How often do you see the person with the disability get the girl?  ;) It is far from my usual reading choice, but I rather enjoyed it.
  • hooksrevengeHook’s Revenge by Heidi Schulz is a children’s novel for middle graders (roughly ages 10-12) that follows Captain Hook’s daughter as she takes command of the crew after her father has died.  It’s a fun adventure full of humor and action with a girl at the center.  Jocelyn Hook is a two-handed heroine, but the book has some funny references to the disabled pirate stereotype that made me laugh.

Maybe pirates aren’t so bad after all.  And maybe people with differences aren’t as helpless as people think either. :)

It’s okay to notice

“You probably noticed what’s different about me,” I said to a group of second and third graders this weekend. Their Unitarian-Universalist Sunday School class is celebrating differences this quarter, and I was invited to talk to them about my difference.

I had two main points I wanted to share with the kids. It’s okay to notice, and it’s okay to ask. But kids always have their own concerns. This group wanted to know how my fake arm worked and how I could do stuff with it. Are you left handed? Can you ride a bike? Can they make a robot arm for you? Yes. Yes. I wish! :)

It’s funny how the concerns tend to correlate with ages. Younger kids–the preschoolers and kinders in my daughter’s class–are less concerned with the mechanics of my prosthesis and how I live my life. They stick to the basics. How did this happen? Are you okay? These are more difficult questions to answer because the answers seem so incomprehensible to them. The idea that someone can be born without a body part just doesn’t make sense. And it often takes some convincing to get them to believe that my little arm doesn’t hurt.

“Everyone is born differently,” I say. “This is just another kind of different. Like hair or skin.” Sometimes kids will ask the same question again and again with slightly different phrasings. Parents cringe with each question, but I keep smiling. I’ve been through it before.

Back to this weekend, I read a book to the kids to close. Harry and Willy and Carrothead is about a boy who was born with one arm too. He’s a regular kid, of course. He even plays baseball. It’s odd at first, but by end end of the story, his limb deficiency is no different than another kid’s red hair. It’s my go to book for normalizing my difference.

I recently found another book to add to my first choices to talk about being different. Maybe next time I find myself in front of a group of kids I will read Jacob’s Eye Patch. It is essentially the book I’ve always said I would write one day. Instead of being about a little girl with one arm, it’s about a little boy who wears an eye patch. He gets lots of questions, and usually he’s happy to answer them. But this one time he’s in a bit of a hurry. (I’ve been in that situation, and I always feel bad when I can’t answer a question.)

It’s a great book, but I especially recommend checking out the website linked above for the extra material aimed at teachers and parents. It’s an insightful resource for potentially avoiding the awkward situations when kids notice someone’s difference in public and you want to sink into the floor because they’ve pointed and loudly asked “What’s wrong with that lady’s arm?” Now that I have a kid myself, I’ve been on both sides of that situation, so there’s no hard feelings when it’s me the kid is pointing at. I promise.

It’s okay to notice, and it’s okay to be curious. Everyone is different in some way. Mine is just a little more obvious that most.

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What we think we see

What do you think you see?

Recently, I’ve run across a couple of different articles about people with disabilities and our assumptions about them. These issues feel personal to me because I was born with a limb deficiency–technically a disability.  I am no stranger to assumptions based on what people think they see.

The first link was being tweeted around some by some parenting folks I follow.  A mom of a child with cerebral palsy writes “This is what a child with a disability looks like, right? Wrong.”  You see, her son doesn’t Look Disabled.   That seems like a good thing until you find yourself having to convince people that your child has a disability.  Over and over again.  I should be glad that I have the opposite problem.  When people see me, they think they see a disabled person, and they make the usual assumptions about what I can and can’t do.  I have the task of pleasantly surprising people.  I can’t count the number of times I’ve heard some version of this: “Oh! You can tie your own shoes! That’s wonderful!”  Their eyebrows mark the exclamation points after every sentence.  It gets old sometimes.  I mean, I’m a grown-ass woman.  You should not be surprised that I can tie my own shoes.  Did you know that I can tie my shoes even without my prosthetic arm?  Now I’ve surprised you!  :)  I understand the surprise.  I really do.  If I weren’t me, I’d probably be surprised too.

The second article was written from a perspective I lived myself: Pregnancy With a Disability.  The woman, a psychologist, writes of situations that were familiar to me (people asking if the disability is genetic) and some that I hadn’t encountered (being labelled as a high risk pregnancy without a good reason).  Particularly interesting to me was her brief mention of learning to breastfeed with one arm. In all the reading and preparing I’d done while pregnant, it had never occurred to me that being down one limb might affect nursing.  And really, my biggest challenge in learning to breastfeed with a limb deficiency was in getting the nurses in the hospital to believe that I could and to help me try.  Once I got past that obstacle, it was about as smooth sailing as learning to breastfeed ever is.

These two articles get at why I talk, blog, and publish about being different.  I understand the assumptions.  I’m not asking that they not occur to people initially. I just don’t want people to be so hard to convince when I tell you I can do something.  I don’t want people to be quite so surprised.  I want to change what you think you see, so that next time you run in to someone who looks like me, you’ll be just a bit more open to what’s really there.