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! :)

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.

On being a different-looking mother

I  read a book recently that focused on mothering with a disability, which included an essay written by a woman with one arm–just like me.  (I should note, though, that she lost her arm as an adult, which I imagine is quite different from my congenital deficiency.)  She wrote that caring for a baby one-handedly was very difficult for her. Her husband admitted that he had never thought of his wife as disabled until he saw her struggling with the baby.  That comment made me pause.  I didn’t feel disabled as the mother of a baby.  I changed diapers, breastfed, bottle-fed, and everything else all with just one and a half arms without feeling like I was missing anything. But occasionally I would see pictures of me holding my daughter that would make me double take.  Is that really how it looks?  How do I do it?

Now that my baby isn’t a baby anymore, we have new challenges to navigate.  Like this: We were baby-sitting a little girl, two-years-old, who was a little afraid of my little arm sans prosthesis.  She backed away if I sat next to her and wouldn’t come close.  My daughter noticed right away. She said, “I know it seems like an owie, but it isn’t.  It’s just regular.”  She grabbed my little arm affectionately to mark her point.  It seemed to set our little friend at ease, but it caught me by surprise.

I suppose all kids end up explaining their parents to other kids at some point, but there was something off-putting to me to see my daughter be my interpreter of sorts at such a young age.

I tend to like to think of the experience of having a parent who is physically different in an idealistic way.  The picture book Mama Zooms is a lovely glimpse of a mother and son playing happily despite her wheelchair.  I love the book, and I recommend it often for its look at the possibilities with a positive focus.

There are times, though, that I worry about the potential negatives my daughter will face as she finds herself explaining me probably almost as much as I end up explaining myself.  How will she adapt to a world in which many of her peers will be curious or fearful of her mother’s difference?

I know what it is like to be me, but I wonder what it will be like to be her.

Read more about my thoughts on motherhood in the zine Will There Be Smoking? Or read about my prosthetic arm on Fake Arm 101.

Disclosure: Amazon.com links are affiliate links. A portion of purchases made via these links earns a commission for this blog.  Thanks for your support!

Disabled or Not Disabled?

I recently came across a sports biography book for kids featuring athletes with disabilities, like Jim Abbott, Curtis Pride, and others.  Only….. one of the athletes profiled was missing a finger.  Really?  I barely consider myself disabled when I am missing my entire forearm, and this guy gets the label with a slightly different from usual hand?

But the book explained that his difference affected his ability to play baseball–for the better, actually, since it gave him a pretty wicked curve ball.  Fine.  I guess I’ll allow it.

Of course, that’s a pretty straight-forward situation compared to the recent question of whether Oscar Pistorius, a double amputee who uses prosthetic devices to run, could compete in the Olympic Games among fully abled athletes.  He raised new questions among the Olympic Committee about the nature of the games and of athletics.  Are prosthetic legs the same as real legs or are they something else altogether?  I’m not sure that I can answer that question for myself, much less for anyone else.

This article on the NY Times web site looked at the science behind whether Pistrorius’ prosthetics help or hinder back in 2007, and he ultimately did compete in the 2012 games.  He will also be competing in the Paralympic Games, which started this week.

I remember a presentation I gave in one of my library school classes years ago on assistive technology.  One of my classmates asked a smartass question: “Isn’t any kind of technology assistive technology?” I would be the first to say yes to this because I’m the sort of person who thinks of my prosthetic arm and my glasses and a step stool as all in the same category, but the question feels so semantic that it doesn’t seem worth the time to consider.  Or so I thought.

Professor Andy Miah has actually given plenty of thought to the question.  He studies ethics and emerging technology, and in this BBC report about the technology of the Paralympics he said,

“In the future, we will think of everybody as already disabled, and it won’t be a question of whether people who have disabilities are better or worse.  It’s about trying to ensure that everyone with their particular limitations are able to use technology in a way that optimizes performance.”

My prosthetic arm

It sounds like something out of a science fiction novel.  Actually I can’t help but think of the Vonnegut short story “Harrison Bergeron” in which the U.S. Handicapper General makes sure that everyone is equal by placing handicaps upon anyone with extraordinary talents.   Really, though, I say stuff like this all the time.  Every time a kid asks me about my fake arm, I explain that I’m just like them.  We all use different things to help us do what we want to do.

Our differences might affect how we throw a baseball, but we can still throw.  We might have to fight for our place in the game, especially if we have a cyborg pitching arm, but it’s a question worth exploring.

See Fake Arm 101 for more about my assistive technology.

Disclosure: Amazon.com links are affiliate links. A portion of purchases made via these links earns a commission for this blog. Thanks for your support!

Can you swim?

 

Sitting by the neighborhood wading pool is as close as I’ve been to swimming in a long while

Lynn Sherr’s new book, Swim, is an ode to the water.  She writes,

“Swimming stretches my body beyond its earthly limits, helping to soothe every ache and caress every muscle.  But it’s also an inward journey, a time of quiet contemplation, encased in an element at once hostile and familiar, I find myself at peace, able–and eager–to flex my mind, imagine new possibilities, to work things out without the startling interruptions of human voice or modern life.  The silence is stunning.”

It sounds amazing.  It almost makes me want to take up swimming.  It occurred to me as I listened to Sherr on MPR that no one has ever asked me if I can swim with one arm.  I get asked how I do all sorts of things or if I can do them at all, but I can’t recall being asked about swimming.  Well, I’ll answer anyway: I can swim, sort of.  I took lessons as a kid, and I have the basics down well enough.  But I’ve never been a strong swimmer.  Frankly, I assumed that one really couldn’t be a terribly strong swimmer with one arm.  Seems logical, right?

Wrong.

A quick search brought up this video of a kid (with one arm) winning a swimming competition.

I also found this article about another young athlete who swims (and participates in other sports) with an arm that looks a lot like mine.

I hate to be too you-can-do-anything-you-put-your-mind-to, but in my experience, you actually can do whatever you want to do if you want to badly enough.  We surprise each other and ourselves all the time.

Perhaps I will give swimming another chance.  I hope to find that stunning silence of which Ms. Sherr speaks to eloquently in her book.

Have you ever counted yourself out of a sport or other activity because of your physical limitations?  Have you surprised yourself with what you were able to do?

Monday Morning Music with the Murder of Crows

I have been a fan of Alan Sparhawk for years.  Low is a long-time favorite, and I like Retribution Gospel Choir.  So I was eager to read about his latest project, Murder of Crows, on the Local Current Blog, in particular, his collaborator, Gaelynn Lea.  The title of the Murder of Crows’ EP is Imperfecta, which references Lea’s genetic disability, Osteogenesis Imperfecta.

I appreciated what Lea had to say about her disability as it relates to music.  She’s just seeing where it goes, and hoping to create awareness just by being present.  I was reminded of a line from a memoir I recently read, Miracle Boy Grows Up by Ben Mattlin, who has a disability severe enough that he wasn’t expected to live.  He is now a Harvard graduate, a writer, a husband, and a father.  Near the end of his memoir, he writes, “Whatever I accomplish will not be despite my disability but with it.”  Amen.

Here are The Murder of Crows:

 

Disclosure: Amazon.com links are affiliate links. A portion of purchases made via these links earns a commission for this blog. Thanks for your support!

On Being Special

I’ve been trying to avoid the Internet–especially Twitter–since I read about Annie Clark winning an award for her penmanship.  I posted the story on Facebook with a comment lamenting that her award was in a special category for people with disabilities.  My mind was buzzing with snarky thoughts I was itching to tweet.

I decided to leave it alone for a while.  Let the matter settle in my mind before posting anything more than I already had.  But days later, I’m still ruffled about it.  Why should this girl with what appears to be excellent handwriting get a special award?  There is a part of me that wants her to be judged with her peers on her ability.  Her handwriting looked great to me.  Let’s not set apart what does not need to be set apart.

Even as I type, there is another part of me that knows that it is different to write with no hands.  It is a noteworthy accomplishment.  Why would I try to say that it isn’t?

I really wanted to write a blog post condemning “special” in all its forms.  I want to say that all kids should be in the same classrooms and compete for the same awards despite the differences that may separate them.

But I can’t write that post.  I can’t say any of that.

Despite my knee-jerk reactions, I’ve read enough to know that I don’t know.  Children’s fiction like Wonder by R.J. Palacio and Out of My Mind by Sharon Draper explore the question of mainstreaming children in education, and Jonathan Mooney’s memoir The Short Bus looks at labels, special education, and whatever normal is anyway from the perspective of someone who lived the “special ed” label.  (I blogged about it here.)

In short, I’m conflicted.  I guess that’s where I’ll leave it for now.

Read more about my prosthetic arm at Fake Arm 101.

Disclosure: Amazon.com links are affiliate links.   A portion of purchases made via these links earns a commission for this blog.  Thanks for your support!