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:
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.