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.

 

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.

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.

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?

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.

What people want to know

I got more than I bargained for when I took Ladybug to the neighborhood park this afternoon.  A school group descended upon “our” park, and it wasn’t long before I became a bit of a park celebrity.  Kids were crowded around me and calling their friends over: “This lady only has one arm!  Check it out!”

While it wasn’t what I expected when we left for the park, I am happy to provide a safe space for kids to ask questions of someone who looks different.  I was born with one arm, so I’ve some time to get used to answering questions.  They quizzed me on the usual topics.  How do you peel a banana? How do you write?  How do you hug?  A few kids were concerned that it hurt, and I assured them that it didn’t.  They were also amazed that my daughter, who quietly played in the sand nearby seemingly oblivious to the crowd around me, did not “look like me.”  I explained, to the best of my ability, that it isn’t genetic.  That it’s just something that happens.  My usual line “Everybody is born differently, and this is how I was born” sometimes comforts kids and sometimes doesn’t.

One little girl seemed particularly concerned for me.  She asked, “Do you need someone to take care of you?”  I just smiled and said that I take care of myself just fine.

I’m happy to answer questions.  Check out Fake Arm 101 to get answers to the usual questions.  Still wondering something?  Feel free to ask.  :)