I am good at adjusting to situations. Possibly too good at times. I don’t always know when a situation is worth adjusting to and when it’s worth fighting. Despite the intense will I sometimes have, despite sometimes accruing a reputation as someone who fights too much, there’s a kind of passivity to me as well. Almost a physical passivity, rather than a passivity of the will. And I have all kinds of mental tools that help me to passively adjust myself to a bad situation rather than do anything about it. In fact, when I was first diagnosed with autism, my shrink’s number one goal was teaching me how to actively change things rather than passively adjust to them. I don’t think he did very well.

And yet.

Despite passivity so extreme it’s been thought of as pathological, I seem to have something hard and unbending underneath it all. Something that, if anyone tries to push it, will push back with everything it’s got. And it’s remained there and gained strength despite circumstances (like breaking under torture) that you’d think would eliminate such a thing.

That hard part of me is something that a lot of passive people I’ve met haven’t got. Even people less passive than me overall. And the effect of not having it is that even a lesser level of passivity runs deeper. Because my passivity, for all its intensity, really does seem a very physical thing. A thing on the surface, and quite a distance below it, but not something that extends down into all of me. Some of it is the passivity that comes with “autistic catatonia”. Some of it is more of a purely mental and emotional passivity — a repertoire of strategies to allow myself to adjust to damn near anything. But there are large parts of my personality that it doesn’t touch.

And at that horrible rec program is where I discovered both the limits of my passivity, and how much of my well-being relies on having at minimum a couple people around me who know and understand me.

I’m told that just about everyone’s well-being depends on others. But — because of those passive elements — I never even thought of that. They took me out of my normal life and the people in it and isolated me from the real world. And all I did was keep trying to adjust. Sometimes what kept me going was the knowledge that at any time I could text my closest friend. I’m good at finding knowledge that keeps me going. That’s part of my strategies for handling things.

And then. They told me cell phones don’t work there. They said I have no access to a regular phone except when they say so. (Even when I was coughing up green stuff. Even though they knew that with bronchiectasis that’s very serious.) And combined with being sick and weakened, their pulling the rug out from under me finally hit the place where I couldn’t bend anymore. And I cried so hard I was screaming.

I tried to tell them how awful it was that I had no power to contact the outside world. I begged them over and over to contact my power of attorney for healthcare. They didn’t. They also treated me like there was something very wrong with me that I didn’t like being forcibly isolated from the outside world.

And I believed them.

I believed them because when you are isolated from the outside, your entire world becomes what you can see in front of you. You lose your bearings. You have no other frame of reference.

Most people have no idea how much their ability to see the world as it is depends on being surrounded by people and things that allow them to know this stuff. And even when the person has few to no other people around, that’s still not the same as being around people who feed you a steady stream of lies and isolate you from anyone who could tell you otherwise.

And that’s what happened. They told me that there was no reason at all that I should be upset about being isolated from the rest of the world. They told me that my being upset proved that I was an untrusting person who sees the worst in people. Because there was no reason — no reason at all whatsoever — to be upset about this unless they were abusive. And they were so clearly not abusive — because they had degrees in special education, worked in the school system, delivered babies, were allies to the self-advocacy movement, and a whole litany of other non sequiturs — that any mistrust on my part was clearly a personality flaw and not a reasonable response to an awful situation. They spent hours trying to convince me of this.

I’m just glad I realized I was sick enough to die, and got them to send me home. A doctor later told me that with my oxygen levels I would have belonged in the ICU if I hadn’t figured out how to use my bipap to support my breathing. And yet if I hadn’t heeded my body’s warning signals… I don’t even want to think that one through. As it is it took multiple courses of antibiotics to cure it. I was also told that the rec program’s refusal to let me rest probably weakened my immune system so badly that I came home with not one but three infections in different parts of my body.

And yet I really believed them that the trouble was with me. The last thing I told them before I left was that I would come back later and prove that the only reason I got so upset there was that I was sick and not myself.

No. The reason I got so upset was that the place was awful. And that the only thing keeping me sane was the knowledge I could contact someone on the outside if it got bad enough. And then they took that last thing away from me and I completely lost it.

But in their world, the problem was how I thought of them. And you know… I see a lot of situations where people try to confront someone with privilege on something harmful they’re doing, and the person turns it around and goes “how dare you accuse me” and makes it about that. And on tumblr or something, that’s an annoyance. Even when it’s a big annoyance. Even when the person is contributing to ideas that have horrible consequences. It’s still mostly an annoyance — it’s a few levels removed from the actual physical consequences.

This was more than an annoyance. This was people with immediate, real, direct, extreme power over people with developmental disabilities. Using that power in ways that ranged from severely emotionally damaging to potentially deadly. And refusing to admit that they had even a teensy bit of power over us. This wasn’t an annoyance, it was an emergency.

Take Nancy, for example. Nancy was an old woman with a developmental disability and severe communication problems. She had a precarious, wobbly gait. And she fell. A lot. Sometimes she managed to sit down and roll before she fell down (I know the trick). Other times she fell in ways that were completely out of control and obviously painful and dangerous.

Nobody ever inspected her for injuries after a fall. All they did was yell at her. They yelled that she needed to stop faking and get up because she had her own two feet and could walk on them just fine. They refused to help her up. They refused to give her physical support to walk. They refused to do damn near anything for her ever. They constantly yelled at her for doing things the rest of us were doing. Sitting down. Standing up. Everything she did was wrong. I don’t think anyone ever talked to her except to tell her what to do or tell her she was being bad in some way.

This was the first thing that made it past my passivity. I always find it easier to stand up for others than for myself. I told them that they were doing something very wrong. They told me that it was okay because her parents told them to do it like this. They told me I could talk to the director who had known her for ages, and she could tell me what was really going on so I wouldn’t be upset. They were abusing an old woman for falling and they thought the problem was I was upset.

And I’m pretty sure what will happen to Nancy. She will die. The problem will turn out to be something she’d had for a long time, something they could have treated, but that everyone dismissed as attention seeking behavior. It was obvious to me that she was in a great deal of pain that nobody was treating or paying attention to. It was there in her every movement. And even when she started retching in the middle of the night, their response to the woman who went for help was “Go back to sleep. She’s asleep. Nothing’s wrong. Mind your own business and don’t get out of bed again.” They didn’t even look at her.

Yes this was a place that told adults not to get out of bed. And they believed themselves not abusing power in any way. (They also told me it was bad that I needed to pee at night because it was waking staff up.)

And the thing is nothing had to be like this. Most of the staff were good people. But when you’re employing good people and telling them that a condition of their employment is to control another group of people, good people transform into abusive people almost overnight. It takes a strong will and a deep understanding of what institutions do to people, to resist it. But oh I forgot that the problem wasn’t that they were acting like an institution. The problem was that I pointed it out. In fact in general I was the problem.

And you know, the first thing I said that really set them off was how deeply upset I was by having no means of direct contact with the outside world. This hit some kind of nerve. They told me that because they were such good people, I had no reason to be upset. I tried — still passive — to explain my history in mental institutions. I tried to frame it in terms of past trauma. I tried to make it about me, not them, because I was too afraid of them to speak plainly. And this still was not good enough. And that they were so touchy that they couldn’t even accept that this isolation triggered terrifying memories, told me something was very deeply wrong and made me panic more and cry harder. Because I know that good places are not so defensive that they cannot even accept that something they did is inadvertently setting off bad memories. When someone can’t even accept that level of explanation, it’s seriously time to panic.

So somehow no matter what I did and how sensitively I tried to tiptoe around their feelings, they always twisted things around until it was my fault. (And they actually refused to let me talk to my case manager after, in a time crunch when looking for words, I dared to actually say that my words were being twisted to mean something I never said. I can’t be tactful at high speed, I can’t even communicate at high speed under pressure.) At one point they even pulled me into an argument about whether I “took” the phone or “grabbed” the phone. No matter what I said — and I was not at my best, communication-wise — they could find some detail to use against me. And they could not stand even the slightest hint that they had power, or abused power, or resembled an institution in even the tiniest fleeting way. And I was the problem, period.

When I got back, I was really horrified by one thing: That my ability to handle things was so heavily tied to being around the right people. I was still in a frame of mind that told me if I could not emotionally adapt to something then I was the problem. I wanted to be strong enough to take anything, anywhere. But my friends opened my eyes to the fact that we are all dependent on context around us being right, including the people. That this is not some special level of vulnerability on my part, that virtually everyone is vulnerable in the same way. It always amazes me when I find out that my problem isn’t me, it’s the way my whole species is set up. Because I always default to myself being the problem. I rarely think about myself as part of a species that has pretty close to species-wide weaknesses. I expect myself to be tougher. Not because I think I’m better than other people, but because I either forget to bring other people into the equation, or have no idea what’s normal.

But I know now: I can’t go off somewhere with no outside contact and expect to be okay. And I cannot pluck myself out of my normal circumstances and expect to function the same as I would normally. These things don’t happen. Maybe this will stop me overestimating myself all the time. Also, and most importantly, I have to stop getting myself into bad situations and thinking I’m the only person affected. That happened twice last summer and I realized how much it affects other people when bad things happen to me. I also realized I need to actually care that I’m in danger, which I generally don’t.

I’m now aware that when I really connect to myself on certain levels, I am not passive at all. The trouble is remaining connected to that. It’s hard work, and way too easy to slide into my usual habits if I’m not being careful. I thought it would be one breakthrough in that regard and I’d be fine. Instead it’s a continual struggle against decades of practice at being otherwise.

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.

.

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.

What makes institutions bad.

[I wrote this in response to a Dave Hingsburger post. Summary of my very long response: Most people don’t have the foggiest clue what’s bad about institutions. What’s bad is something you pretty much never hear about, which is the violence it does to people’s insides at a very deep level. And that can’t be stopped by just removing the things that LOOK bad and throwing a layer of glamour on top.]

Please, please, please everyone who talks about this in the past tense — STOP. This is still going on. Everywhere.

I can’t even explain what it feels like to read things like this. Because I think too many people get the wrong kind of idea.

They will think that this is over. It’s not.

They will think that the awfulness and cruelty of an institution is measured by the size, the shape, the physical beauty or lack thereof, the amount of money funneled into it.

And those things are not real.

And those things — the belief in those things — are hurting and killing people still.

People don’t understand what’s behind the worst institutions I can possibly imagine. They think I’m kidding when I say it. Understand that I’m saying this as someone with experience of institutions that people often remark (from my photographs) look just like prisons, and institutions that look absolutely lovely to anyone who doesn’t have to live in them.

The worst institutions have lots and lots and lots of staff. They have beautiful grounds that people are more or less free to walk around on. Every room is decorated in ways that suggest a regular, pleasant house — and if anything is stained or broken someone fixes it, washes it, and paints over it within a day. There are no locks on the doors.

All of the staff are gentle and would never physically abuse an inmate. They are highly trained at redirecting and calming anyone who becomes violent. If you go outside, they follow you at a discreet distance, where they think you can’t see, to give the illusion of freedom and privacy. Their every movement and tone suggests sweetness and gentleness.

But they treat everyone as if they were somewhere varying, between infancy and four years old. With everything — everything — that entails.

Because they do not use physical restraint, they have to restrain you in other ways. They do it by such skillful manipulation that if you ever find out you were being manipulated, it’s long after the fact. If you confront them on it they’ll sweetly and politely tell you they have no idea what you mean. And they will continue to somehow always get you to do what they want, or else to feel awful about not doing so.

Glamour is a word that can refer to a kind of faery magic that can make a hovel appear to humans as a splendid palace. I often use the word to mean a similar kind of deception — a beautiful facade over a terrible reality. I make it part of my life’s work to see through glamour. And I see a whole lot of glamour used in conversations about institutions.

The above institution I have just described has a layer of glamour over it as well. If you look beneath the surface, it’s utterly horrifying. Most people don’t know how to see beneath the surface. Even when you personally are in such a situation, it can be hard to see.

You feel as if there is something pressing down on you, muffling and suffocating. But when you look around, there’s no outward sign of it. So why are you not happy? You must be an awful person to feel so awful when all these nice staff people are doing so much to make you feel at home. You look around, you try to search for what is bothering you, and it’s nowhere. But you’re in agony. Whenever you think nobody’s looking, you cry, sometimes it feels like you’ll never stop. Deep down inside you, you know something is going terribly wrong. But trying to pinpoint it is like trying to get a firm grip on a cloud.

Get a glimpse under the glamour and you see that all that has happened is a bunch of substitutions. They stopped locking the doors, but they started following you everywhere and subtly guiding you where they want you. The institution itself is positioned so that even if you tried to run away you couldn’t get anywhere. They stopped restraining your body, but their manipulation is like a permanent set of shackles on your mind. Their sweetness in manner hides the fact that they are sweet to you the way they would be sweet to an infant — even when you’re pushing sixty. Treat you like that long enough and you begin to respond and structure yourself like an infant, and the damage that does inside can’t be calculated.

I literally have nightmares about that type of institution. When I’m wrapped up in the glamour, this terrible calm takes over. It feels like something soft and smooth pressing all over my skin, and the temptation is to surrender to it and feel its fake calm, fake happiness. Then I wake up and want to vomit I am so terrified and disgusted with what I’ve just experienced.

This past summer I attended a recreation program for DD people. And it was so much like a replica of my nightmare it was scary. Sometimes I would get smothered under the glamour, other times I wanted to scream. I cried more that week than I normally do in years, yet I was at every turn made to feel as if the problem was me. I can be so very passive but even my most passive wasn’t good enough for them.

One day I looked around and saw that everyone there was older. From the era of big institutions. Where they were used to being treated like this, and mostly could out-passive me any day (which is scary because I can get very passive). I talked to a woman whose roommate goes there — she said she goes in a grown woman and comes out acting like a young child. And not in a way that’s just her self-expression — this is one of those places that molds you into that form.

To survive in a place like that something inside you has to break. It’s impossible to fully explain to someone who hasn’t been in that position. Something inside you has to die. And it doesn’t die any less because you got one of the “good” (read: glamour-covered) institutions. The same forces are crushing down on you either way, the difference is cosmetic.

The worst part of institutions is not physical violence, obvious forms of abuse or neglect. It’s not even the experiences you don’t get to have. It’s the damage that is done right down to your soul, by living under the power of other human beings. Glamour makes no difference. Prettiness makes no difference. Size makes no difference. Even length of time makes less difference past a certain point than you’d think.

Until you understand that damage — what it is, what it means, where it comes from — you will never get rid of institutions. You have to understand it on a very intimate level or you will reproduce it without knowing what you’re doing.

I still can’t tell you how long I was institutionalized. I can tell you roughly the amount of time I lived in mental institutions and other residential facilities. But that’s not the same as the amount of time I was in institutions. I call what I got when I got out, “community institutionalization”. That’s where you live with your parents but you spend most of the day being driven between various places — segregated schools, segregated day programs, segregated rec programs, each one with institutional power structures behind it. I remember mental institutions where they walked us to different parts of the grounds for different parts of the day. There’s not so much difference between that and being driven.

The transition between a locked ward on a mental institution and later periods of my life was so absolutely gradual that by the time I was “free”, I never noticed. That’s how they wanted it. I simply created the institutional walls around me wherever I went. That’s why I put “free” in quotes. If I had been someone else, I would have been free. Because I was me — because of my particular history — I was not. There were invisible walls all around me and I certainly never noticed the real ones were not there. Which was exactly the purpose behind what was done to me. They didn’t think I could function outside an institution so they carefully built one inside my head, making me truly unable to function anywhere.

I can get over the physical violence. The attempts on my life. The neglect. The sexual abuse. The parts of “normal life” that I missed and still am missing. So long as I physically survive (which even the recent rec program almost avoided) I will and can get over these things.

I am not sure to what extent I will ever get back the parts of me that died in order for the rest of me to survive. Every now and then I notice I’ve gotten a little bit back, and I think that finally everything will be okay. And then a little time passes and I realize how much is still gone.

I’m not even saying I can’t be reasonably happy. But there are parts of me I still have no idea if I will ever get back. Those parts weren’t destroyed by ugly bare rooms, horrific physical or sexual abuse, the loss of normal experiences, or any of the rest of the things most people think when they think of bad institutions. Those things happened to me and they are bad. But on a real basic level they are not the cause of the problem.

The cause of the problem is a certain exercise of power. Of person over unperson. And in order to survive it the inmates have to become as much of that unperson as they can manage. And that does violent damage deep inside the self, that can be incredibly hard to repair. It’s violent even when it comes with purported love and sweetness and light.

And until people can stop forcing us to damage ourselves in this way, institutions will continue. That, not anything else, is the core of what is wrong with them. But it’s much harder to put that into songs or images or even just words, that the average person would comprehend.