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.

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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. :)

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.

 

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.

Pirate arms vs. Robot arms

One of the most common questions I am asked regarding my prosthetic arm is some variation of the following: “Why don’t you have one of those cool robot hands I saw on TV?”

My standard answer is to talk about how prosthetics are expensive and often not covered by insurance.  This explanation usually makes sense to people, but I can’t help but feel that I’m letting them down.  After all, the basic design for my prosthesis was developed in 1812.  The materials have changed for the better; they are lighter and cheaper. But I still look like I belong on a pirate ship with my body-powered, hook-shaped prosthesis.

amazingbioI bring this up now because we are in the middle of Disability History Month (at least we would be if we were in the UK), and it seemed like a good time to link to this article from How Stuff Works: How Prosthetic Limbs Work. It is a fantastic article that covers a lot of the points I usually make, like how expensive this stuff is, how they haven’t changed that much, and how they don’t last a lifetime.  People don’t usually think about these things.  They just think about the cool documentary they watched about the cutting edge stuff.  A kid might think of a book they read like Amazing Feats of Biological Engineering, which makes it seem like bionics are more here and now than they are.*  Or they think: We live in the twenty-first century; Robot arms should be a reality by now.

It does seem like we’re getting closer to that reality.  3-d printing offers some really interesting options for prosthetics, and organizations like E-Nable are trying to connect people who could benefit from the technology to the people who know how to use it.  I am excited to see where this will lead.  Perhaps sometime soon my old pirate arm will be a thing of the past.

Until then, it would be cool to see a documentary or read a book about the prosthetic devices that people are actually using right now.  Even if they do seem like they are from another era.

 

More questions about my prosthetic arm answered here.

 

* Nothing against the book.  It’s actually pretty cool to see prosthetics addressed at all, and if it encourages kids to think about this kind of technology, I’m all for it.

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.