Archives For limb-different

Today I was made aware of a new TV show coming to AMC in February of 2013.

It’s called “Freakshow” and this is what the website says about it: “AMC’s Freakshow is the new unscripted series that follows Todd Ray’s quirky family business — the Venice Beach Freakshow. Leaving behind a successful career in the music industry, Todd was finally able to realize his true passion: bringing together all things bizarre and unique, including two-headed animals, strange artifacts, eccentric performers and human oddities. Located on the Venice Beach Boardwalk, spectators gather to see truly exceptional people, specimens and creatures. Todd and his wife Danielle open their home and hearts to the extraordinary people who proudly call themselves ‘Freaks.’ Normal is relative.”

There’s been quite a reaction within some of the limb-different community due to the fact that a couple of the people in the show are limb-different themselves.  One has no arms and one, no legs.  As a voice in this community, I want to share my thoughts.

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I Am Not One-Armed

July 19, 2012 — 49 Comments

I am not a “one-armed” anything.

A recent article about a limb-different boy in Texas winning his events at a swim-meet has people talking about the mis-use of the term “one-armed.”  Ben Ramirez clearly has two arms, but is missing part of one; like me.

The Man, The Myth, The Legend – Ben Ramirez

So, what’s the deal?  Why does the media default to “one-armed” when there’s any kind of arm limb-difference?  Jim Abbott even spoke to the phenomenon in his book, Imperfect.  Jim has nearly two full arms, but a malformed left hand, and still he was referred to as a “one-armed pitcher.”

“One-Armed” Olympic Champion Pitcher, Jim Abbott

In fact, I very deliberately chose the domain because, well…it’s accurate.  I didn’t choose or IWishIHadAnotherArmWhichWouldActuallyGiveMeTwoAndAHalfArms.ThatSeemsGreedy.Org because my arm is not really the issue.  Plus, that last one is really long.

And as obvious as it may seem to us that “one-armed” is the wrong term to use, I’m going to be honest with you here and say…I understand it.  I understand it because I’m still getting used to all the terms myself.  Eight months ago I had never heard the term “limb-different.”  Never.  In my whole life.  When I started visiting message boards and different online groups, it was like learning a foreign language.  LBE?  RBK?  I’ve learned that those mean Left Below Elbow and Right Below Knee (amputees).  (I bet somebody has a super sweet grid of all these terms somewhere.  I want it.)  Just today, in fact, I got an email from someone who used AK in his note and I had to think hard about what it meant.  Ahh, Above Knee!  And I’m still a novice at all the other terms like Symbrachydactyly.  I just googled that and had to look at it seven times to make sure I spelled it correctly.

It’s a whole different world, this limb-different community.  It’s fun and exciting for me, but there are times I feel lost.  And ignorant.  I am limb-different and can probably tell you less about the science and terms and lifestyle than a ton of the moms around here!  But, I suppose that makes sense.  I grew-up this way and never thought of myself as different, so why would I take the time to learn about it?  My mom, on the other hand (so to speak), probably knows more about it than I do, too.

So, I’m thinking two things.  The first is that we need to be patient.  We need to understand that differences are always a challenge and people generally do their best to treat them with respect and dignity.  That said, it’s also an opportunity for us to teach!  To teach those who are different than we or our kids are how to approach our differences accurately and with respect.  You wouldn’t describe someone with blonde hair as “black-haired” and think it was good enough.  “I mean, hair is hair, right?” you might think.  And you’d be wrong.  And someone would correct you.

I don’t view this as a fight at all.  It’s an opportunity.  Let’s seize the opportunity and learn together.

Also, please don’t buy the domain  I’m saving-up for it.

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This is one in a series of posts I wrote about my second trip to Jacmel, Haiti, where I spent a week at Faith Orphanage.  You can read more posts about my trip to Haiti here.  I started to edit this piece, but decided to leave it as is.  It’s interesting to see where my head was at just twelve months ago. What a difference a year makes!

The airport in Port au Prince is hilarious. You get off the plane and are greeted at the bottom of an escalator by a welcoming band, then you’re whisked away to the baggage area on a bus, then you go through customs (sounds official; it’s not), then you try to find your luggage in what is essentially a giant warehouse with sometimes-working conveyor belts. It’s one of the least organized experiences you’ll ever be a part of.

On my recent trip to Haiti, this wasn’t even the funniest part.

Having miraculously secured all of our luggage, we got in line to head out of the airport. While in line, a portly Haitian security guard wouldn’t stop staring at me. I politely smiled. Then, he pointed at his arm and moved it up and down, then pointed at my left arm, missing from the elbow down. I smiled again and nodded. Then he did the most awesome thing ever: he raised his eyebrows, made a frown and shrugged his shoulders as if to say, “Ah well…sh** happens.” I started laughing. Hard. I’m not sure if that was the most appropriate response, but I can’t remember experiencing such an honest reaction from an adult before.

If I’m not cracking jokes about it myself, the fact that I have one arm never really comes up. I’ve been thinking about it a bit more than usual this year, though. In fact, in January (2011) I had a piece published on about it (read it here). So, on this trip, as opposed to the last one I took, I noticed it a lot more. For one, the kids were a lot more interested (read: fascinated) with my arm this time. They’d randomly come up to me and put their little faces close to the end of my arm and they’d grab it and poke at it and play with it. The fact that I allowed them to do this surprised them, I think, and gave them the freedom to explore. I already wrote about Jameley’s adorable reaction to all that. It got me thinking about the reality that they’ve probably never seen anyone with only one arm. In fact, I don’t remember seeing any one-armed Haitians on my last trip. (But, this time…oh, this time! I saw TWO! Two one-armed Haitians! I felt like Captain Ahab finding Moby Dick. Except, ya know, without all the revenge stuff.)

What’s weird is that, in reality, I rarely see any one-armers in America either. The fact that I was in an unfamiliar place that was so completely different from my normal daily reality, I believe, heightened my awareness of it. I mean, being white in a place where everyone else is really dark is one thing. But, being white and having one arm where everyone else is really dark and fully appendaged is quite another. I never really wonder what people are thinking about my arm in America, but when I was in Haiti, I was really conscious of it. And I think that’s good. It’s ok, at least.

Me and Jameley, our sponsor child.

In retrospect…how do I say this…the experience of bringing my one-armedness to the kids in Haiti was supremely rewarding. I’m proud of the fact that I was able to expose them to a physical difference they most likely have never seen before and helped them to understand that people with physical differences should be embraced and learned from, not shunned or ridiculed. It was refreshing to see their curiosity satisfied. It was also powerful to experience their acceptance and love. Impacting the kids’ lives in this way is something

I’ll never forget.

I’ll also never forget that security guard’s reaction. Classic.

Share something you’ve learned from someone who has physical limitations.

The Band!

My Little Dude.

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