Invisible or on a pedestal?

Every young adult at one time or another is hit hard with reality. “Oh, this what the real word is like.” I believe my early twenties where painfully enlightening somewhat due to the pedestal people had put me on since the day I was born. In my twenties, all of a sudden, this pedestal became shaky and crumbled. Reality hit me extra hard.

While I understand why the pedestal existed, it had an adverse effect. The so-called professionals raved about my smarts. They told my parents that I could achieve anything. For a short time I was given the support to shoot for my dreams, so understandably I got a big ego. I was told and shown I could do anything. Soon I forgot I was disabled. Maybe I also tricked myself into thinking I wasn’t disabled in order to fit in better with my non-disabled classmates. Whatever the case when I grew up, the real world wasted no time letting me know I was disabled.

I didn’t notice this all as an adult, but everybody seemed to personally know me. Every teacher and every child in my school knew of me and knew my name. When I was motoring down the hallway in my first power chair, every kid i passed would wave and say, “ Hi.” There I was, on the Elementary School pedestal. I was the one mainstream kid in a chair, so of course they would know of me.

When I wasn’t in the power chair I was in my oversized stroller. I remember being aware that when a few years went by, the stroller (with me in it) wouldn’t be cute anymore. When I grew too large for the stroller people would really KNOW I was disabled for sure. Yikes.

This novelty of a cute kid with a disability got all sorts of attention but at a cost too. It pumped up the pedestal so high that it was a hell of a fall off of it in my early twenties.
I’m glad I wasn’t ignored as a kid but I’m trying to convey what it was like when I met the real word.

After twenty years of being on that bright comfy pedestal in a blink of in eye I was invisible. Sure all kids experience a version of that going out on their own. But do they ever feel totally invisible? I sure did. There were no more big happy entrances, no more automatic special accommodations, no more special anything. I didn’t ever expect things to be handed over easy; though you have to imagine this was a rude awakening for me. “Hello world!’ The world slams the door in my face. The pedestal is gone.

Secondly, because I had been raved about in school, I thought I was super smart. Also it seems when people do finally see past my disability and can tell I have a lick of sense, they get all excited about it. “ Oh, she IS smart,” they say. After years of receiving that reaction, I began to think I was some sort of genius. The pedestal strikes again! Truth is I’m just an average Jane. (Knowledge wise, because there’s nothing else average about me!)

These days, the pedestal is pretty much nonexistent, but it does reappear from time to time. For the most part I’m glad it’s gone because it did no favors for my self image. All it caused was confusion. One moment I was on the pedestal, next moment I was invisible.

Instead of telling children and children with disabilties that they are special, tell them they're different and it’s ok to be different. There is room in the world for different.



P.S. This blog was somewhat inspired after I saw Gavin Rossdale live. http://www.ivykennedy.com/concerts/gavin.htm


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3.3.13


It's all or nothing. No happy medium. No true inclusion. Either you're in the spotlight or ignored.

When a video or picture of a person/kid with a disability becomes popular….

Parents are tricky when it comes to this subject. I think it's fine to be proud of our kid with a disability. when a picture or video gets out in cyberspace there's no telling how it's going to be used and how it's going to be perceived. So maybe it goes from a proud parent to some token kid with a disability being objectified. Not good.

When a video or picture of a person/kid with a disability becomes popular, and is everywhere it really bugs me. I can't explain why in one sentence.
One reason may be why is because people with disabilities still are so segregated and not seen (literally) and kids with disabilities still are fighting tooth and nail to be educated ..... then to see the same pic/vid pop up in my face again and again, and even if it's celebrating a good moment, the fact that it's so popular, is the public forgetting what barriers that person faces or just do they not know because all they are seeing is this ONE moment?
I'd hate the best moment of that persons life be that video or picture. "Oh wow, this is totally awesome. Look how many views I got!"

Have you ever heard of "inspiration porn"? It's stories/blogs/video about people with disabilities that the general public goes bezirk for. They eat it up, and want more, more, more. The media feeds it too. That token person with a disability, doing something totally ordinary that gives the public warm and fuzzies.

I think in a small way feeding frenzies like these only segregates people with disabilities even more. Points us out from the herd, put us on a pedestal that very uncomfortable.
Yes, I think in the long run the outcome of this type thing is negative.

Let's celebrate everybody's accomplishments, not just focus on the person that is "overcoming". Because disability is natural, there is no overcoming, there's only living with it. Not achieving in spite of disability, but BECAUSE of it.




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