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:

“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:

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.

 

On safe spaces and speaking up

jacobseyepatchLast weekend, I visited a Sunday School class at my church to talk about disabilities.  I gave my usual explanation of my prosthetic arm and read Jacob’s Eye Patch, which has become one of my go to picture books on the subject of differences.  I love that way it makes it clear that questions and curiosity are okay. Instead, it puts the focus on how and when you ask questions or express curiosity about people’s differences.  The kids seemed to get that. They all agreed that there are times when they don’t want to talk about themselves or be in the spotlight, especially about something different.

Then I asked the kids if they had any questions for me about my prosthetic arm or about how I did something.  “Anything,” I said.  “This is a safe space where I encourage questions.” Hands went up slowly, shyly.  Still more kids asked their questions quietly when other things were happening in the class.  For some people, curiosity doesn’t care for the spotlight any more than differences do.

As I left, I said, “If you think of a question later, I’m around on Sunday mornings.  You can always ask me.”  It’s true.  I am a walking safe space.  I wasn’t always this way, and in all honesty, I don’t always feel up to it even now.  There have been several times, usually on a bus ride home after a long day of work, that I’ll purposely avoid potential questions that I don’t feel up to answering right then.  That, of course, is why Jacob’s Eye Patch hits so close to home for me despite my having no personal connection to eye patches (other than the obvious pirate connections that plague both Jacob and me).

The truth is that when I was a kid I didn’t want to be the person who always had to answer questions, explain myself, or have patience with rude comments.  I was more likely to tell some sarcastic story about a car accident or animal attack than answer any real questions.  I’m not proud of that, but I think that it’s probably true for a lot of people with disabilities.  Even for those of us who have been born with our differences, it can take a while to get comfortable with the reality of our story.  I’m not sure exactly when the shift to purposely creating a safe space for curiosity happened for me, but I think part of it started, or at least started growing, in sixth grade when my reading teacher took me aside to invite me to share my perspective of life with a disability to the class as we began a unit on challenges.  At the time, I declined the opportunity to speak up.  I didn’t like the idea of drawing attention to myself as different at that age, and I didn’t have anything important to say on the subject of “challenges.”  Or so I thought.

To start off the unit, my teacher booktalked related titles from our school library.  I don’t remember any specific book titles from that booktalk, but I do remember that they all seemed to have the same theme: life with any kind of disability is really hard.  I remember feeling irritated by this, but I still didn’t think I had anything important to say on the subject.

When the class discussion started rolling, I sat quietly, listening as my fellow students spoke of the characters in the books we were reading for the unit.  I thought: Is that how they think of me? Did they pity me like that?  Was I as “inspirational” to them as the characters in those books?  Was that okay with me?

Eventually I did raise my hand to speak.  I don’t remember what I said.  What stands out to me all these years later isn’t so much that I said the perfect things.  It’s that I was given space to speak and that I was allowed to stay silent, to listen, until I had something to say. I felt valued but also respected and that was so important to my feeling safe enough in that class to speak up.

onehanded-300x442To be honest, I haven’t really stopped speaking since then.  Now that I know the power of sharing my perspective, I have made it an integral part of my personal and professional life.  Last summer, I was invited to be part of a book discussion group at a local public library as they read One-Handed Catch by MJ Auch.  In the group of middle schoolers, I shared how my experience as a congenital amputee compared to Norm’s experience with an acquired amputation in the book.  If the kids took away nothing else from what I had to say, I hope they realized that there is no single disability experience.  There’s not even a single experience of being one-handed!

As Chimamanda Ngozi Adichie said in her TED Talk, “The single story creates stereotypes, and the problem with stereotypes is not that they are untrue, but that they are incomplete. They make one story become the only story.”

I’m still grateful to that sixth grade teacher who invited me to share my story and let me speak my truth even when it differed from the narratives presented in the class reading material.  She fostered in me an appreciation of safe spaces and open discussion and that has shaped so much of my life now, both professionally and personally.

So, thanks Mrs. MacDonald from Lewis-Palmer Middle School in Monument, Colorado.  I hope you know that you had a positive impact on at least one of your students.

This is not a love story

thisisnotalovestoryI’m not sure what I expected when I started reading Judy Brown‘s memoir, This is Not a Love Story.  Probably an expose on the level of her novel, Hush, which was about sexual abuse in the ultra-orthodox Jewish community.  Certainly I figured it would be some kind of tell-all since Brown has now left the ultra-orthodox community. What I found in the book was not either of those things.

It was a family story.  A sibling story. An autism story.  It was perhaps a love story after all, even if the title claims otherwise.  It certainly explores the love between mother and child as seen through the eyes of eight-year-old Judy.  Her mother refused to send Nachum away, no matter how difficult he was.  Even if that’s what ultra-Orthodox families usually did with special needs children.  She would not give up on one of her children.

The ultra-Orthodox community is always in the background of Brown’s story with Nachum’s autism diagnosis taking the leading role.  Young Judy worries that her brother’s issues will ruin her marriage prospects. She makes deals with God to make her brother normal.  The background details might be different for her, but the story is one that many families can relate to.  She said in an interview with Salon:

“When it came to autism, there were superstitions and things that God knows how many other mothers had to deal with. There are universal things that just go through it. What may be surprising to readers is to see so much of what they empathize with, the parts [in which] you can see a little bit of a reflection of yourself. You don’t expect that in this weird place. That’s the way it is.”

I think that’s the strength of the book. It brings you into the ultra-Orthodox world so completely that you stop thinking about the religious details, and you see the real story, the real people who live that life. For whom that life is normal.  The empathy you feel for each person in this book may surprise you, and that’s exactly why I am recommending this book to you.

I look forward to what Judy Brown writes next, no matter what it is about. I have a feeling she can make it real.

Read excerpts of This is Not a Love Story here and here.

You can also read more about Judy Brown’s experiences inside and outside the ultra-Orthodox world in this series of essays for the Forward.

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. :)

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.