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2:05pm January 30, 2012

What I Want(ed)

This is one of those things I found on my hard drive and have no idea when it was originally written, because it’s clearly been passed from computer to computer. I want to say 2000-2003 – wow those three years feel like they took forever compared to years these days. Somewhere in there. I was still getting services aimed more at training me in daily living skills, and wasn’t getting nearly enough help with the basics. I was clearly having huge problems with PTSD still. I think this was one of those times I crashed, either shutdown or fatigue stuff or both, and was living mostly lying down on my couch. It’s weird, like a time capsule or something, to read this and try to remember what things were like. For some reason I think this is also when I had a lot of untreated neurological pain, before I rediscovered the wonders of Neurontin. It just has a “this was written while in serious pain and not aware of it” feel to it. I’m really glad that I now have a lot of the things that I wanted back then. My life is much better despite my actual ability to function at these things being much worse. I would also say that this is a really good illustration of what it can be like to be without enough services (or with the wrong kind of services) and really struggling, at a point where staff are just doing things that you can’t add enough information to or control, so they miss all these important things and crises just happen and happen and happen because you can’t communicate well enough, or get enough services if you could, to stop them.

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I want to be able to lie here and know it’s okay.

I want to be able to lie here and know that I don’t have to worry about things like food and money and bathing and isolation and making sure the cat box is clean and learning and writing and coordinating and everything else that gets so hard when my body gives out like this.

I want to know that I won’t go hungry when I forget how to make food.

I want to know that I can still have friends when I can’t leave the house.

I want to know that I can still spend time with someone when I can’t move or talk or communicate and that they won’t give me up because I have suddenly become boring to them.

I want to know that if I need to explain this to someone for any reason at all that I won’t have to wade through all their explanations of why this could be happening.

I know better than they do – I am acutely aware of subtle differences. I can tell when it is my body giving out, when it is my motor skills, when it is depression. I can watch them interact. I don’t need an outside opinion.

I want to know that I can go out somewhere and have a good time and not have to worry about getting home or about what will happen to me once I get home and crash from exhaustion.

I want to be able to have a life of my own in my own place no matter what happens to me.

I don’t want people making decisions against my will and against my judgement anymore – I am done. I am tired of that. I am through. I don’t need people to tell me what is going on. I just want to live my life.

I want my life to stop being a series of near-averted crises. I want people to stop telling me that I bring them upon myself.

I do not want to hear anymore that if I do not think about the future then I will be happy. Because if I did not think about the future I would not be able to eat, and I am not happy at all when I cannot eat. I am tired of people questioning my survival skills.

I am tired of being afraid or depressed whenever my functioning drops because there’s no support in place for basic, basic needs when that happens.

I am tired of being told there is a mold I have to fit in order to get what I need to live the everyday life that most people already have.

I am tired of being seen as weak or passive because I have to lie down, because I can’t think straight enough to argue a point, because I can’t fix my computer or my wheelchair anymore, because I don’t measure up to your standards of strength and ability.

I am tired of having to choose between something I want to do and something I need to do, when something I want to do is something like taking a walk for fun, and something I need to do is something like eating a meal. And I know that if I had sufficient support I could do both.

I am tired of having to hide depression when it happens because if I admit to having depression sometimes, they will equate it with the physical fatigue issues, and they will take away my wheelchair and feed me pills that don’t work. When all I really need to deal with the depression is a better living situation and time and distance away from my past.

I want to know that most of these things will be gone or diminished at some point in my life.

I want to know that things will get better.

I am not unrealistic and I am well aware that things are not always perfect, that life is not a utopia, that there is suffering in the world. And I would not have it any other way.

My life has been shaped by pain as much or more as it has been shaped by joy, and the shape of my life would not be complete without it.

I think it is possible to accept pain in life and still work to make life better, to correct things that are unjust, to try to make certain kinds of pain less, to make the world better.

I want to see a world without institutions for example, in any of their forms, be they big buildings in the country, or group homes in the city, or single person programs that are controlling someone else’s life against their will under the guise of the community.

I cannot imagine that world, because my life has been shaped too much by this world, where those things have figured prominently in my life from an early age before I was ever put there.

Just because I cannot imagine it does not mean that I will not work for it.

Just because my life has been irrevocably shaped by certain horrors in the world, and just because not all of the shaping has been bad, does not mean that I would wish those horrors on anyone else, or that anyone else deserves them.

I want to be able to go out into the world as someone with a different kind of mind and a different kind of body, and not have to worry that people are automatically looking at someone else when they see me. Something they imagine and project on top of me, and read my actions through. I do not want to be part of their filter and I want to stop being punished for not fitting the filter.

I want people to be unconditionally horrified that people are locked up, and not just horrified when people are locked up for certain things. I do not want that horror to fade when I say, “No, I was not locked up because I was gay, I was locked up because I was different and my mind works differently from most people and that’s what some people do in this society to people who are different.” I don’t want it to be less of a problem. I don’t want it to be less discrimination if I say I was locked up for being crazy or autistic than if I said I was locked up for being gay or paralyzed.

I want to blast away the concept that institutions are right for anyone at all.

I want them to stop saying I’m one specific case who maybe shouldn’t have been there, and I want them to start looking at reality and see that nobody should have been there.

I want to see the day when people are born, and look back in horror at the times when people built these prisons and other mechanisms of control. And cannot believe – sincerely cannot believe – that anyone could possibly be that cruel.

I want people to stop believing that institutions are defined by a particular architecture or even the presence of a building at all.

I want people to stop believing that right now, right here, as I type this, I am “integrated into the community” because I live in my own apartment, involuntarily isolated from all the people outside.

I want to stop being told to put a date on the time that my institutionalization stopped. Because with all of this least restrictive environment bullshit, I will never know. Was it when I left the first hospital? The second? The group home? The special-ed classroom? My parents’ own version of involuntary outpatient commitment? My psychiatrist’s office? The regional center (which of course I have still not left)?

I want to stop being told to put a date on the time that my institutionalization started. Because it could have been my admission date, but it could have been years before when I noticed that all the people I saw who were like me were locked up and segregated, and I began to plan my escape and spend hours in the woods trying to figure out how to survive on my own if I had to, and how to hide. Did it start when I began to imagine that my life as an adult must either involve incarceration or a life in hiding on the edge of town or in the woods as a hermit? Was it when I saw people who moved and walked like me being led down the street in unnatural lines, and began to try to plan my camouflage? Was it when I began to accept the fate that I thought was inevitable for someone like me?

Has it ended yet? Will it end as long as I am still afraid of everyone around me, because I am still afraid that they will turn me in for being what I am? Will it end as long as I look at my best friends in the world and wonder if they are thinking like institution staff? Will it end as long as the world treats my people like we are not worthy of respect and like we must earn our place in the outside world, or get locked up on principle, because that is what you do to people like us?

I am firmly convinced that what makes an institution is certainly not the walls.

I wonder sometimes whether in my own life institutionalization will ever end, even if the foundations of the last institution are ripped out of the ground – that is how deeply they affect my life every day.

I want to work to create a world where nobody will have to live this life.