“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.

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.

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.

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! :)

The Spotlight of Difference

I don’t see many people who look like me.  Occasionally I would meet people with a limb deficiency or wearing a prosthetic device, and they would tell me stories of trauma and rehabilitation.  I would try to look for commonality, but often there wasn’t much to go on.  So I was surprised to see a contestant on a dating reality show who looked and sounded like me.

Sarah Herron was very straightforward about her limb deficiency on The Bachelor.  She said basically the same things I always say.  It isn’t a disability.  It’s just different.  The moment probably seemed a bit overly dramatic to some, but I’d rather have a moment of drama by being direct than many moments of awkwardness if we avoid talking about the obvious difference.


Herron expressed that she isn’t interested in being a role model or a spokesperson, but in my experience, there’s an undeniable “role model effect” to physical difference that you don’t get to turn off.  I am the only one-handed person most people know, and that isn’t likely to change any time soon.  It took me a long time, but I’ve come to understand that that’s just part of my life experience.

People see the word “disability” when they see me.  If I am a spokesperson for anything, it is for the idea that people are more than what you see.  Sarah Herron is more than her limb deficiency, and so am I.  We’re both different, but the difference is just part of our stories.

Read more about my experience at Fake Arm 101.