Tuesday, October 14, 2014

Is Looking Normal The Only Thing That Matters?

CNN / KETV - October 6, 2014

(Click the link to watch the video ...)

Oh, dear. I know this is supposed to be lovely, but I found it upsetting.

First of all, I find it sad that the bride is so fixated on “walking” down the aisle rather than wheeling. She is going to enormous effort and expense for one moment. There is no indication here that this is part of a more long-term, practical improvement in her mobility. It’s just for the wedding. It’s as if she thinks that walking is the only “right” way to do it, and so she’s determined.

On the other hand, brides and grooms often go a bit overboard and obsess about making a splash at their weddings. Maybe that’s all she’s doing here, though that is not how CNN seems to interpret the story.

So, why did this video actually make me angry?

For some reason, it tapped into a well of anxiety deep inside me, and this immediately produced a very vivid picture for me. I have somehow fixed one major aspect of my disabilities … my spine is now totally normal, no longer deeply curved. Everyone I know is more excited and overjoyed about this than they have ever been for any of my past accomplishments. It’s a bigger deal than graduating from high school or college. I get more congratulations than when I got my first job. I am more admired than I ever was after any of my countless surgeries that had less visible results. The message is clear. All of my past accomplishments pale in comparison to this one, because NOW I AM NORMAL.

This scenario could never happen. There is nothing that can be done at this point to straighten my spine … or make me taller or more muscular for that matter. It’s all in my imagination. But the reaction I imagined seemed very real and very plausible, and it felt horrible. Imagining fixing one of my disabilities felt horrible. And this wasn’t an idea I thought up intellectually after hours of deep thought. It’s an emotion that hit me without warning less than ten seconds after watching this video.

Let me be clear. I have very supportive friends and family who have given me the extremely valuable gift of self-confidence and acceptance. I am not suggesting that they would react this way. I am saying that they might. That’s probably why this vision was so chilling. Seeing this woman with so much going for her yet seeming to value a moment of normalcy above everything else, made me wonder, for a moment, if everything good I’ve done in my life is really just a consolation prize. Maybe the most meaningful “miracle” I could pull off would be to be normal. Maybe my disabilities are a permanent asterisk in other peoples’ eyes.

I think that's one reason why so many disabled people don’t embrace the goal of a cure, why we don’t necessarily always shed a tear when a paraplegic walks or a deaf kid hears for the first time. I have no problem with this woman deciding to go all out for an essentially cosmetic moment at her wedding. She can do what she likes, and more power to her. What bothers me is how CNN and others turn her into some kind of a hero. To me, it degrades all of the other things in her life she has to be proud of. A job in her chosen field? Yeah. Nice husband? That’s nice. BUT LOOK … SHE’S WALKING!

On the bright side, there’s a moment at the start of the video when her father says, in effect, that it doesn’t matter to him how his daughter gets down the aisle, on foot or in a wheelchair. He supports her wish to walk, but it seemed to me like he was trying to tell her something important, something she may not really believe yet … that disabled or not, he accepts his daughter and loves her as she is. That message got drowned out though by the rest of the clip, which made it even more upsetting.

Anyway, I feel better, now that I’ve got this out of my system.