Fake Arm 101

How important is it for kids with disabilities to see themselves in fiction? Probably more important than we realize, but most children’s books featuring characters with a disability are written for abled kids to help them understand kids who are different. As a result, the books are more agenda-driven than one would like. However much I agree with the agenda, it still leaves something to be desired to write a story in such a way.

In any case, I was appreciative to see my experiences in picture book form in Harry and Willy and Carrothead, which is about a little boy who was born with one arm. He wears a prosthesis, plays sports, and lives a normal life. Who would have thought?

I especially liked these illustrations of little Harry growing up—running around as a toddler, finger painting as a kid.

And the happy ending encapsulated by the picture of the three friends. Notice Harry’s prosthesis?

This book is a great opportunity to talk to kids about limb deficiency in a way that relates to issues that they may have faced like being teased or bullied. I’d love to say it’s a great book, but I’ll stick with “great opportunity.” Really, I’d love to see a picture book where limb deficiency is like the multi-racial family in The Hello, Goodbye Window. Present, but not the point. Children’s book publishers? Listening??  More about the book in my review on Propernoun.net

(Originally published on Disaboom)

Shark Girl by Kelly Bingham

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.

–From Shark Girl by Kelly Bingham (my review)

Is that all I will ever be?  Arm Girl.  That’s how it feels sometimes.  That’s how it feels when strangers jump to my rescue in public places.  That’s how it feels when people I’ve just met tell me how proud they are of what I’ve done before I tell them anything about myself.  That’s how sympathy feels.  That’s how staring feels.

I was impressed with Kelly Bingham’s insight on the amputee experience.  It isn’t quite my experience, but I felt much of the story in Shark Girl to be true to what I knew.  The worries, the triumph, the frustrations.  I felt all of those as a teen myself.  So much so that I often became defensive about my arm as a result of people who fed into those feelings.  I purposely sought to do the unexpected including getting a job as a server in a restaurant.  I relished the experience and bragged about my job whenever I thought I could catch people off guard.  Don’t you dare tell me I can’t.  It became a mantra.

Thankfully those feelings have faded now.  I’m approaching thirty, and I’ve left most of the defensiveness in my ability behind as I have grown comfortable in what I can and cannot do.  I rarely bring up my tenure as a server these days, and when I do I forget why it was so significant until someone reminds me.  I forget to notice when people stare or double take, and that’s okay.

Post-Art-Project Mess

Mostly, I’m just regular girl these days.  A woman with a book in her purse and an art project in progress up in her studio.  A mom juggling a baby and life with less hands than would be convenient.  Just like anyone else.

I must admit to feeling more than a little off-put by the woman I met a few weeks ago whose first words to me were “What happened to your arm?”  And when her response was so sincerely sad for me, I checked out of the conversation pretty quick.  My more defensive side sprang to action to assume that someone who doesn’t “get it” couldn’t have anything to say of any import.  I felt bad later for judging her about as quickly as she judged me.  It isn’t easy to give people the benefit of the doubt.  But it’s necessary if we are going to get anywhere with anyone.

I have confidence, though, that things and people can change.  I know I have.  Mostly.

Originally published on Disaboom

As soon as I published Fake Arm 101, I started getting emails. From parents with children with a limb deficiency wondering what sort of life they can expect for their little one. From expectant parents, with only an ultrasound to go on, saying how much better they felt after reading my words. From a woman wondering why her limb deficient brother won’t get a job.

I agonize over my reply emails to these people. These strangers. What can I say to them?

In one reply to a parent of a limb deficient boy I said, “It maybe comforting to you to know that I have led a completely normal life. High school, part time job, college, grad school, career, married, and currently pregnant. [Editor's Note: As of this moment (April 09), I'm a mama to a very active 15 month old.] I learned to ride a bike and took swimming lessons and all sorts of other normal kid things that it might’ve seemed like I couldn’t do. My parents never allowed me to use my arm as an excuse, so I never learned to think of myself as ‘disabled.’”

If that’s the case, though, what am I doing here? Why am I posting a blog entry on Disaboom.com? Do I belong here? I’ve never been quite certain if I belonged or not. For many years, in my idealist youth, I eschewed anything disability. I didn’t check the box on job applications much to the confusion of potential employers, I’m sure. I didn’t want to claim a label that didn’t feel like me.

But after years of being set apart for my limb deficiency. Of being asked questions as though I were living on a different planet rather than without part of a limb. Of demonstrating my prosthetic to wide-eyed children. Of overcoming the doubt in ability cast upon me despite all that I have accomplished. I came to accept the label. And embrace it.

Here I am. I can do absolutely anything, and I have done absolutely anything that I have ever wanted to do. But no one who doesn’t know me very well ever believes it. People still express surprise that I can type. I sometimes mention that I waited tables while in college just to see people’s faces. They’ll nod appreciatively. Then, it’ll register. A one-armed waitress? Seriously? Yes, seriously.

I’m as abled as the next person, but I can’t convince anyone of it. And that is why I am here. That is why I identify with the disability community. I’m not sure what I can offer to anyone. I never know what to say to the people who email me looking for advice after reading Fake Arm 101. I’m just a girl who can type fairly well who wrote up an FAQ to do with her life as it stands. I hope it helps.