No one’s ever called me a lobster girl, at least not to my face.
Dave and I recently started watching Carnivale, the short-lived HBO series about a traveling carnival in the 1930’s. I’m hooked already!
In one episode, the main character, Ben, is sent out to find a lobster girl to bring back to the show. He finds her in a dilapidated shack. She doesn’t speak. It’s her only scene in the episode, and it’s not flattering whatsoever.
I looked up the actress after the episode and found that it was Cathy Berry, who is Grady Stiles‘ daughter. The Stiles family were freak show performers who called themselves The Lobster Family. Their story is pretty depressing. Look it up later, if you don’t know it already. Or don’t. Maybe it’s better you don’t know.
Bree Walker, another well-known person affected by ectrodactyly, also appears on this show in later episodes. I haven’t yet seen her performance as the Scorpion Queen, but from what I’ve read it is a more positive performance than that of Lobster Girl.
Speaking of Bree Walker, I read an article about her in Guideposts Magazine when I was a kid. Aside from our family friend Suzanne, I hadn’t met or heard about anyone else with ectrodactyly. My mother encouraged me to write a letter to Bree to tell her she was an inspiration. I was excited. I wrote to her and told her a bit about my 9-year-old self. I’d never written to a famous person before but somehow I expected to hear something back. Alas, it never happened, and I’ve always felt a bit bitter about it. Though all these years later, I guess I’m doing just fine without her. Alcoholism and plastic surgery have not been kind to her.
Bree Walker then and now.
Moving along. I had several points I wanted to make about ectrodactyly and freak shows and disability.
First of all, I’ll say that I am glad that traveling carnivals and freak shows are not a thing anymore. While you can find them if you look hard enough, the people participating in them have chosen to be there. At least I hope so.
One of my Facebook friends is a performance artist who calls himself the Black Scorpion. I think it’s cool that he has embraced his uniqueness and emphasized it in such a fashion. Pretty much everyone else I know who has ectrodactyly has a job or career that doesn’t highlight their digits (or lack thereof).
My ectrodactyly isn’t something I spend a whole lot of time thinking about. When I go out in public, I do not hide my hands. Appearance-wise, I am usually more concerned about how my hair looks or what kind of wardrobe malfunction I’m about to have. As long as I’ve got shoes on, I’m not thinking about my feet at all. See my previous post for more info on my foot-shyness.
Some people (like the Stiles family mentioned above) have more debilitating ectrodactyly that affects their ability to walk. In this case I can see ectrodactyly being called a disability. But for someone like myself who is able to walk and have full movement and strength of arms and legs, it’s not a disability at all. In fact, I have a hard time picturing what I would do with a full set of fingers. I don’t know if my brain could handle keeping track of all those extra digits. I’d be typo-ing all over the place, and poking myself in the eye when I tried to scratch my nose.
One other ectrodactyly-affected person I wanted to bring up is Meg Zucker. I learned about Meg and her blog, Don’t Hide It, Flaunt It, several years ago. Meg’s mission is to get people to be proud of their differences and not be ashamed of the things they can’t control. She is a great role model for anyone with a difference who feels that they need a little encouragement to get out and flaunt.
As for me, I can’t say that I consider myself a flaunter, aside from my activity on this blog. I do get out and meet lots of people through my job and through my volunteer work. I’m not ashamed of my hands, or the scars on my face, but I don’t exactly run up to people and show them off either. I just live my life. Some days things happen that remind me that I’m not average. Some days that can bring me down a bit. But not for long.
I can do a lot of things with these hands. Too many things to list. The only thing I can’t do is give people the finger. It’s probably a blessing in disguise because I’m sure I would have caused a road-rage incident by now if I’d been able to flip off all the people I’ve wanted to.
Maybe I should focus on making heart shapes instead.
I love my hands!
Of course there are a lot more people affected by ectrodactyly than I’ve mentioned in this post. It’s possible that you’ve met one or two and did not even notice. We’re everywhere! We are writers, teachers, artists, architects, builders, movers and shakers.
Ectrodactyly might seem frightening when you first learn about it – especially if it is your child who is affected. But the more you see others with this condition who are functioning normally, the more you realize that it is just a minor detail.
Fingers, shmingers! Who needs ’em?