What’s New in The Land of the Not Quite Right and how it affects the rest of the community


Welcome back to the land of the not quite right. I’ve tried not to be away so long. I’m inspired today by Ray Davies.

I was standing in the crowd at this concert. 2 rows back watching Ray Davies sing all of these old songs that I barely remember because they were on some ancient jukebox of my past. I was standing as everyone around me was singing the lyrics to the Misfits.
“You’re a misfit
Afraid of yourself so you run away and hide.
You’ve been a misfit all your life
But why don’t you join the crowd and come inside
You wander round this town
Like you’ve lost your way
You had your chance in your day
Yet you still threw it all away
Now you’re lost in the crowd
Yet you still go your own way.”

I was suddenly struck by the idea that in this crowd full of strangers, not one of them really understood what it was like to be the misfit. To never fit in and to never get invited to try and fit in. None of them knew what going your own way really truly meant.

So, I’m struck by this on a few levels. One of them is my own personal experience of being that little misfit girl who never really figured it out and just strove for being a misfit to look somewhat normal. I guess I make it look easy now at this point in my life. Don’t placate me with “We’re all unique/different in our own way. We’re all special in our ways.” That’s cookie cutter people talk for wearing red instead of green and green day. Unless you’ve made a life out of being different, you don’t really understand what it means. We’re not all unique. Because if we were all unique, everyone would be inventing things and making the world different. But that isn’t the case. The fact is that it takes those few people thinking outside of the box to make the world actually work. There is a Hot Topic quality to life today. Take all the weird shit that we used to do that made us different and mass market it so that everyone can be the same in their difference. Great business plan, but zero points in the tolerance department. All that has happened is that our own uniqueness has been branded and given to the freaks so that they can be a different kind of cookie cutter people. Don’t be surprised, though, freaks, you will still screw it up and it will still not be quite right.

So, another part of my life is touched as well. The part that recognises another little girl that has been doing her own thing in little ways and is somewhat unique and wonderful. This little girl is letting her life be turned completely upside down by people who probably will not matter in the end. At least their pushing and prodding toward some insane end will probably not matter. You can not let others turn your life into something that it is not for their benefit. We all have to be masters of our own destinies and the moment you let one other person develop the plan, you turn into a cookie cutter purpose.
And then there is the state of funding in Indiana for people with disabilities. God forbid, a million years ago, I let some senior management guy talk me into attending a training for developing autism teams in Indiana. The idea was that at least one person on the team should actually be autistic so that the point of view was being addressed. I was all for that. However, the original idea was that these autism teams would set the tone for autism services in the state. This has not really been the end result. Just like every other thing that involves services, it has been left to neurotypical people to tell autistic people how to feel, what to feel, when to feel, and what their own experience is. I for one do not want neurotypical people determining these things.
A neurotypical person cannot tell me how I’m feeling, I am the only one that can do that. They cannot tell me what I need, either. And I’m certainly not going to let them determine what I want. The disability system has become rather like the education system. A bunch of non-teachers telling teachers how to do their jobs to the most effectiveness. I feel like all the autistics are being told how to be autistic by people who don’t have a clue.
I know that in the world of needs that the rocking, head banging guy with echolalia is going to win. No one cares that I’m only marginally successful in the world of reality when it comes to social skills. I have a job and I have friends. I must be normal.
The autism spectrum is called a spectrum because there is a range of us who function under the umbrella of the diagnosis. We range from very low functioning, very sensory oriented low functioning people to very smart and pretty well functioning with varying degrees of functioning people. We come in all sizes of social awkwardness. We come in all sizes of employment success. However, the need remains the same, no matter where we are. Stress shuts us down immensely and causes all sorts of problems. We are driven by routines and thinking patterns that can occasionally become obsessive. We are driven by the high sensory needs of a spider on roller skates.
I need as much help in certain situations as a low functioning person. It’s a matter of stress processing. And it is very difficult. You can not take two or three parts of the spectrum and say these are the people that we are getting federally funded for servicing, fuck all to the rest. We are all important and only we can speak for our needs.
We need to get together and figure it out. We need to tell them what we need and what we want. We need to make sure that people who are not us are not making the decisions for us. I don’t want some idiot guy deciding that I need more sensory input when I’m hyper sensitive to it. I don’t need that same guy deciding that I’m unfit because of my sensory stuff. I need to know that I have resources for when I’m in trouble and that there are people out there who are not afraid when I start at well-functioning and end up in a puddle of not functioning at the end of the day. I need people in this community that understand that and don’t act like I’m a freak when I can’t cope.
Deep inside we all want to know that we are accepted and loved for exactly what we are. Deep inside we want to know that we aren’t freaks, but rather just someone who thinks a lot differently and has a lot to contribute to the planet because of my unique perceptions and viewpoints. It’s not hard for me to point my camera and take a picture from my perspective. The question is, is it hard for you to interpret and respond to? Does your own in the box thinking keep you from experiencing the wonderfulness wrapped up in this perspective? Think about it.

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