Tag Archives: family

Freaks (the sequel . . .)

Okay, one more quick leap up on the soapbox and then I’m done, so bear with me.

I got to thinking more about my “Freaks” post and drawing the correlation between the sideshow at the county fair that my son witnessed, to some of the “medical” dramas on TV, to my own daughter. I think it was an article in our local newspaper, basically quizzing people on the level of controversy that this sideshow brought up in our humble little community, which started the process. Or it could have been discussing the issue with my wife, who I’m coming to discover is probably the world’s best sounding board for ideas and feedback.

Sure, the exhibit that includes “Little Linda” is an out-and-out throwback to the “freakshow” days of decades past. Little Linda herself doesn’t speak much (of her own choice); saying only that she is “okay”, “comfortable” and “full of God.” I suppose though that if she were to actively answer, either in her defense or justification, all the questions and concerns that her life-choices bring up that would pretty much be all she’d do. THAT would get irritating, tiring, and become more of a . . . well . . . a job.

So she sits quietly . . . and gets stared at. Which I think is the crux of the issue that makes my wife and I, and others (especially those parents and relatives of family members with disabilities) so uncomfortable: The staring. Call it ignorance, or discomfiture, or curiosity. Call it what you will . . .

But there is a solution! I believe we have come up with a safe and irreversible cure for it:

Education.

When people’s (especially children’s) gazes linger a little too long on my daughter, I simply walk over to them and say, “Her name’s . . . . ., why don’t you come say, ‘hi’.” There, stigma removed. All of a sudden she’s human.

I found it humorous that many people quoted in the article about “Little Linda” didn’t think she would be real; including my own son. “I didn’t think she’d be a real person,” he said (honestly thinking/hoping she’d be a robot); “I didn’t know what to do, so I just said, ‘hi’.” All of a sudden she was human. People left the display with a completely different attitude than when they walked in. Some amazed, some sad, some disgusted (at the display, not the woman), but changed they were.

And change is good.

We’re happy to talk about our daughter; about the struggles she’s faced and the struggles we’ve faced as parents and a family. That’s a reality. But the reality is also in the joy, the good stuff, the normality of having our wonderful daughter in our lives. And, even at six, she’s happy to talk on her own behalf . . . and talk she does! Granted, you’ll only understand about half of it but that’s ssooooooo not the point. The first thing you realize is . . . she’s first and foremost a little girl. She loves pink. And purple. And babies (man, does she love babies!) She loves to play dress-up and twirl “like a ballerina!”

It’s all about the education; about removing the stigma. Humanizing.

As my wife was quick to point out, even though the draw for some of those “medical” TV shows is the shock-and-awe of “the eight-limbed baby” or “the World’s Fattest Man” you realize, as the show unfolds, that they’re also . . . human. Even if we, as is a natural tendency in humanity, tend to react to some of these shows in a manner of pity or piety bordering on martyrdom (“oh, that poor dear; Look at the misery in her life. Thank God she has the strength she does, and thank God I don’t have to go through that.); or in an unrealistic and often unfair comparison—counting ourselves “better than” or “more fortunate than” or “at least we’re not (fill in the blank)”.

Even the less outrageous but equally as voyeuristic shows like “Celebrity Rehab” or even “Kate Plus Eight” bring a certain level of humanity to an otherwise modernized sideshow. They get to tell their side; their reality, their struggles, their joy, their good stuff. Still, if we would be willing recipients, they get to educate.

The more you know, the more you know! Ya know??!!  The simple fact that as many people were shocked as they were by the exhibition of “Little Linda” just goes to show how far we’ve already come.

The easiest way to remove stigma, or prejudice, or fear (especially fear) is education. And maybe, just maybe, there’s some value in those “medical” shows after all.

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Freaks

“All the best freaks are here,

They say all the best freaks are here,

Please stop staring at me . . .”

~~Marillion “Freaks” (from B-Sides Themselves, 1988)

My son spent another day at the County Fair yesterday, this time under the never-ending-patience of his grandparents. He woke up this morning and couldn’t wait to tell me all about the animals he saw, the rides he went on, and one other thing . . .

. . . a tent with the “Smallest Woman in the World” inside.

Wait, hold on . . . what?

“Yeah,” he said, “I went inside and I expected it to be a robot or something but it was an actual girl . . . a real person!”

Having a daughter of our own with a disability, my wife and I were understandably taken aback for a moment. “How did that make you feel?” we asked.

“I don’t know,” he said, kind of thoughtfully, “A little weird, I guess.”?”

“And why was that?”

“Well,” he answered after some careful consideration, “I guess I didn’t expect her to be a real person. I mean, she was just kinda sittin’ there listening to her Ipod and reading something. I didn’t know what to do. So I just said, ‘hi’.”

“And what did she do?”

Shrug. . . “Just said ‘hi’ and went back to reading. I think she was bored. It was just kinda weird.”

And I thought yeah, that’s a word for it. I thought carnival sideshows (or “freak” shows as they were more commonly known) went out of style decades ago. It really did seem weird that an old-tyme sideshow would be at a twenty-first century County Fair.

“There were other ones too,” my son piped up.

Excuse me??

“Yeah,” he continued, his enthusiasm gaining momentum, “there was a ‘snake-skinned angel lady. And I think there were others too, I just didn’t see ’em all.”

“Did you go see the snake-skinned lady?” we asked.

“No. It was seventy-five cents to see ’em,” he said, “seventy-five cents, each!”

Wow, I thought, your whole life on display for seventy-five cents. Each. But who was I to judge; even though I feel a little closer to the situation having a daughter who is regularly stared at—discreetly by the adults but more openly by children her own age—but gawk they do.

Still, maybe it was by their own choice that these people found themselves in this travelling sideshow. Maybe it’s all they can do with their “talents” given that society is by-and-large going to stare at them anyway: Might as well get paid for it. Maybe they’ve been coerced into this lifestyle and there are forces at work much larger than any of us, on the surface, are supposed to be aware of. But an out-and-out “freak” show? In today’s modern, civilized society? As my son says, it’s just “weird”.

Oh, but modern-day freak shows we do have! They’ve just been digitized and moved into our living rooms as network entertainment. A quick run-through of the “medical” shows advertised on TLC this week will give you an idea: “The World’s Fattest Man”, “The Woman With Giant Legs”, “My Shocking Story” (This week featuring an eight-limbed baby, whee!).

What are they if not our own privatized sideshows; instead of inside tent walls, now discreetly hidden behind locked front doors and drawn shades?

We, as a society, can now maintain the outward appearance of civilization because all of our quirks, oddities and vices have been quietly moved indoors; behind closed curtains and away from the judgmental eyes of our neighbors and other self-righteous watchdogs. We warmly greet friends in the grocery aisles unaware of their discomfiture that they’ve just gotten done watching “The Girl With No Face”. We sit beside the usher in church unaware that even as he’s singing praises his mind is filled with the humiliating pornographic images he’s currently downloading to his computer and can’t wait to get home to. Quirks. Vices. Habits. Addictions. I’ve got mine. You’ve got yours. They’ve got theirs.

We’re forgetting how to interact as a society. Yet we’re also forgetting that our seemingly enigmatic online or network interactions still have real world impact. Sure, the carnival sideshows may be a disappearing symbol of the past, but the modern world is still rife with examples of our tendency as a fallen species to be drawn to the lurid, the odd, the perverse, and the different. From the beautiful women on the porn site, to the eight-limbed baby on TV, to my own daughter . . . we still stare. Sure we’re embarrassed; ashamed even. Yet we stare on.

And when it comes right down to it, who are the perverse? Who are the odd; the abnormal; the “freaks”? And if we can honestly answer that, why do we think its okay?

D.Faults

My lovely wife asked if she could read some of my post drafts earlier this week and, of course, I said yes. And so, I’ve been waiting over the last couple of days for any kind of feedback, wondering how she would take my feeble attempts at humor and meager exercises in pithiness. This morning the clouds parted, the sun shone through, and my wife says, “I read some of your posts yesterday . . .”

“. . . you don’t seem very happy.”

Wha . . uh, huh??

Ummm, okay.

“Your humor’s lame.” That I could’ve handled.

“You’re not as deep as you think you are.” That would’ve been okay, too.

Even, “your writing sucks,” wouldn’t have been surprising.

But, “You don’t seem very happy.”? Not what I was expecting.

So I read them again for myself; trying to read them through her eyes. There’s not a lot, I’m not that prolific. But I read them all, and you know what?

She’s right.

What I thought were witty attempts at humor with just a touch of weary cynicism were at times biting; bordering on annoyance and anger more often than I wanted to admit. What was going on?  What was I thinking?  Why am I doing this? Is it to provide a living, breathing document of my struggles and hopefully, eventual reconciliation between my public-oriented job and my chosen faith—as I’d always envisioned it to be? Or is my subconscious simply trying to exorcise my inner resentment and cynical, jaded demons?

My original desire in writing was to point up the nerve-wracking, wearisome, often frustrating world that we—the ones who have chosen customer service as our bread and butter—live and sometimes even thrive in; interweaving my struggle to come to terms with, and even have a cohesive relationship, between my work and my faith. But, reading through my as-yet-unposted drafts, you might start to believe that I truly do think the worst of people. That my opinion would be that if given the choice of right and wrong, good and evil, noble and self-serving, we as a species would bend to the self-serving, evil and “wrong”. Because, in my opinion and as some people would say, “it’s the way we’re wired.” Or, as I like to say, it’s our default. And thinking of people in this way is apparently MY default.

Ugh. What a wonderful way to go through life. Especially when you don’t know it.  Yet when it’s pointed out to you it’s so blatantly obvious you can’t help but go, “oh, crap. Yeah.”

So . . . “You don’t seem very happy.”

No, I don’t.

And I’m glad she’s pointed this out. I’m glad that, what I thought were passable attempts at witticism—attempts to make other people happy—only pointed up the lack of joy and happiness in my own life . . . pointed up by the one closest to me. And I guess she should know.

And that makes me happy.