Conversation on Institutions

This is a cross between a conversation and an interview, originally done for the Autreat 2004 program book. Both interviewer and interviewee have been institutionalized, and the interviewee has also worked in an institution. Some of the content will probably be disturbing to anyone who's experienced this kind of thing.

Amanda: Okay, so if you don't mind the question, what kinds of places were you in, how long, and did you see any major similarities or differences between the kinds of places?

Laura: Okay. I have a relatively, compared to many people I know, kind of... tame history. I have been in private wards, I think once, state hospitals I believe three times, and one group home. Length of time — that's a hard question for me actually. I'm not quite sure. There's something about those places, that has a quality of suspending time. Not in a pleasant way. It does tend to leave one very detached from much of the world, including — oh, take that back, that's two group homes — and there's another thing also about those places, in that they tend to blend in one with the other, so that it's rather difficult sometimes to figure out which one is which. They all seem rather much the same, although one knows they're not. It's kind of a twilight zone experience to be in one, so as a consequence I really can't give you a very good answer to either how many or how long. I should say that I know that some of those were thirty-day stays.

Which was how much people would pay for. The interesting thing is that they tend to put you in there for as long as your money will last. Which says something about exactly how much these things are used as truly essential hospitalizations or institutionalizations of any sort and how much they are used as "How much money can we get out of the person, if we can't get that much money out of them, well they don't need to be as hospitalized." I firmly believe that something that's really saved me over time is having really bad insurance.

Let me put it this way, I'm not campaigning, although there are many people of my political persuasion, politicians who are all that eager about, what is it, what's that phrase? Parity. I firmly believe that parity should not exist. I firmly and enthusiastically believe that the best way to save people from hell is to make sure that there is as little mental health coverage as possible. Interestingly enough, another person in exactly my same situation might have spent six months or a year or years in a hospital. It's not like, in fact I think right now, I know right now knowing from the people who had good insurance, that frankly you end up much more functional if the system spits you out faster. The faster you're out, the less "treatment" you get, the healthier you are, which says an awful lot about what those places do.

My personal experience is the worst place of them all was the private hospital. By far. State hospitals were, by contrast, and they varied in awfulness, mind you, at no point am I talking about which ones helped me the most. They don't help, period. They are forms of imprisonment. There's no point in discussing how much one helped me or the other. None helped. All were destructive. The private hospital was by far the most destructive. The state hospitals were relatively less destructive. Sometimes I actually refer to them as "good", but that should only be interpreted from the perspective of relative, yes, I think another person who's been through this can understand what I mean when I start referring to this or that hospital is a "good" one. I don't mean it is a good one. I mean it is hell on earth. I mean it is less hell than another one, you know? So anything I call a "good" hospital should be understood in that light. But the state hospitals were markedly better.

I do have to say one thing, that there was one group home that I was at that was genuinely a positive experience. But it has nothing to do with "therapy". It had to do with the fact that I had been homeless for quite some time, and there were two things going on: The staff were very eager and willing to bend rules right and left, we were allowed to come and go as we pleased, although we were supposed to sign out and stay out for longer than, you know, X amount of time, and certain X amount of hours, the staff winked, blinked and let us go however which way we pleased, we were allowed into the kitchen whenever we wished, there was very little attempt to enforce anything upon us. About the only time any of that kind of stuff happened was when the psychologist would show up.

And I'd been homeless for quite awhile. It was a place where I could stay and eat. I at that point had been diagnosed with authentic real live starvation. They fed me, they let me in the kitchen during off hours which wasn't supposed to happen, I was allowed to go over to the local university library and read all I wanted to, which was the primary activity I did in that place, and there was a social worker there who actually got me a disability check and a place to live. So my experience there was positive, but again, frankly, all the things that were positive about that, are the things that should have been positive about any kind of homelessness program. It wasn't anything special about it being psychiatric. In fact, if anything, the psychiatric aspects of it were negative. Like when the psychologist when she would show up and attempt to impose things upon us.

But the other one that I was at was in no way shape or form different than any of the hospitals I was in. Fortunately I was able to get out of that one fairly rapidly, fairly easily, but it was bad. In fact, the people there, their approach to, "Oh we are a group home," was "Let's see how heavily we can drug the patient." Because <dramatic voice>"If they're out there on the streets they must need more drugs than if they were in the hospital!"</dramatic voice> And I was incredibly, incredibly over-drugged in the handful of days I was at that horrible place.

Amanda: What do you see as the reasons you were in there in the first place?

Laura: I was out in the world, with no real life skills, and surprisingly enough, any special survival skills will start looking kind of ragged and ineffectual, and they have a tendency to look at people who are looking pretty ragged and ineffectual and declaring them, "Oh that must be a crazy person. This person doesn't look the same as others and they're not functioning well!" The first instance was back when I was a kid, and that was private hospital, that was where I became a "childhood schizophrenic" and in that case what got me there was that basically I was being bullied at school and I was fighting back. And I was weird. Weird, bullied at school, and fighting back. Ergo, I had "childhood schizophrenia". The logical solution is stop the bullying, but, you know, why be reasonable?

Amanda: And if you did have schizophrenia, if you believe in it anyway, do you think it would have been any better?

Laura: Oh absolutely not. In that private hospital, the one woman who I think actually was "schizophrenic" — I take that back. There were two women there who probably were schizophrenic, this out of an entire ward of people, most of whom had the diagnosis of schizophrenia. The staff hated the real schizophrenics. They absolutely hated them. And it was one of the two real schizophrenics who was killed in the quiet room, while I was there. So, if you consider murder to be a good treatment, hey yeah. Send 'em all there. If you consider that to be a very bad place, it is.

Amanda: Was there any aspect of being institutionalized, socially or otherwise, that was different for you specifically because you were autistic, or that was affected by your being autistic?

Laura: You know, I don't know. I don't know because I don't get the impression that they treat autistic people or treat anybody differently from each other, it's a place of extreme regimentation, and standard ways of dealing with everybody.

Amanda: I can give you an example from my own life if it shows at all what I mean. Like between me and the other patients, as an autistic I was often the person ganged up on if they wanted to gang up on someone. Or they would ask me questions and I'd take them literally and I'd get in trouble, and I had a harder time figuring out the non-written rules of the ward, even when other people knew how to evade staff better than I did.

Laura: Okay. Hmm. It sounds funny, but any of this may have been going on. I wouldn't have been aware of it because I just sort of faded into the background and acted like the wallpaper. And didn't interact with anyone, and didn't talk to anyone, and tried very hard to appear as much as possible like the wallpaper. So I'm almost not in a position to answer that question. I just did wallpaper. I was just resident wallpaper.

Amanda: Okay. I did some of that too, I know what you mean. Did you find yourself insulated from any of the negative things that could have happened to you because you were autistic?

Laura: Well, hmm. I don't think being autistic is especially protective.

Amanda: Like some people have said that being put in the quiet room¹ didn't hurt them because they liked being alone.

Laura: I'm not going to find that credible. Because there's a difference between isolating myself in my own room, which I do all the time. I mean I rarely leave the house. That's kind of the way I want to live. And the thing about that is I'm in control of my life, I'm picking that, and I'm free to do whatever I want to do. And it's not the same as being drugged and strapped down. Aside from the fact that that kind of confinement is physiologically dangerous. Restraints kill. Being autistic in no way shape or form is going to make one immune from the danger of restraints. If anything there's some evidence that autistic people might be slightly more endangered by restraints, or at least people having certain traits that are oftentimes common with autistic people may indeed be more endangered by restraints.

There's a big difference between choosing to be alone and... I'm not sure that the quiet room is necessarily alone. My grand experience with the quiet room included basically being beaten up there by staff while I was lying there, tied down in spread-eagled form and they were beating me up, I still have scars from that one. Yes, there's a strong threat, the quiet room is inherently violent.

Amanda: So being autistic didn't protect you from the sensory experience of being beat up either then.

Laura: Since when does something that is inherently overloading for even neurotypical people, in any way shape or form, not overloading? Most people would feel pretty overloaded after being beaten up. Neurotypical people. Being autistic is in no way shape or form defensive against that. In fact, come to think of it, actually, being on the ward all the time is extremely overloading. You're not allowed to spend time by yourself. You're expected to be out there, and I do remember being expected to socialize in various sorts of ways, which I don't know if I did or not. <laughing> As I said, I did my very best just to sort of evaporate.

That's why the state hospitals were so much better than the private hospitals. The private hospital they had a lot of staff around. In the state hospital it's very easy to just sort of hide. There's no staff to try to make you be anywhere or do things or talk to them, or talk to anybody else, and you could just hide. State hospitals are better because you can hide. You don't actually have to, like, associate with people, but in any case, dayrooms² are not the best place to go if you don't want to associate with too many human beings. Or watch some TV that you don't want to watch when you'd rather have quiet, which you don't get there ever, and so on and so forth.

Amanda: Between the dayroom and the quiet room, which one would you take?

Laura: Oh, dayroom. I prefer to be safe, you know relatively safe. You know, not even a choice. Which one would I like to do, have my life endangered or be relatively more safe? That's an easy question.

Amanda: Were there any positive aspects to being there, either in spite of or because of the setting?

Laura: Well, as I mentioned before, the fact that somebody was able to help me get housing, and get off the streets, that was certainly positive. That's about it. It was for the most part pretty bad.

Amanda: Was there any aspect of getting out, or returning to the outside world, that was different for you in a way that related to autism?

Laura: Yeah, there was certainly the fact that being locked up didn't improve one's life skills much. To put it mildly, if one's spent 30 days being locked up and brutalized it doesn't really improve one's life skills much. Apparently some people think it does, but let me assure you it doesn't.

The thing is, I am not too sure that the autistic experience of the whole thing is substantially different from anybody else's experience. It basically devastates whatever kind of normal... it's... yeah, the whole experience is more devastating than anything else, and while I'm sure that autistic people are... I don't know. This is all kind of like asking me, how did Auschwitz affect autistic people uniquely? Auschwitz kind of affected everybody pretty much in the same kind of flagrant awfulness. There may indeed have been a few things that were different in some way, but those little differences fade against the overall background of the awfulness of places.

And that's not a completely pulled out of my head random example, because, after the first experience I was in almost like shell shock for a year or so, and then finally I found something written down that resembled what I had been through, and it was an account of a concentration camp survivor. And I'm really quite certain that there's kind of a floor in human experience, where you can't get much worse, you can't get any worse. Because after a certain point, you just sort of turn off and walk through it like it's a dream, and you can't actually be hurt any worse than that. Yes, you can be physically damaged worse than that, but the basic core experience after you reach that particular point of hellish, remains pretty much standard. And I do think that concentration camps, were the first accounts that matched my experience of what I went through.

Amanda: Yes, that's why I tend to relate to institutionalized NTs as well as I relate to many autistics. But I'm looking for both similarities and differences in experience so I'm asking these kinds of questions.

Laura: Well the answer I have is I'm not too sure there's a lot of differences. Because when you get to that level of devastation, the differences are, you know, so subtle as to be not really — they're basically meaningless. I don't think I can even notice them. They are, we're really talking about something that is uniformly bad, that has reached down and touched that basement of human experience, that state of hell, and you can't get any worse than it. And differentiating between shades and dimensions of better and worse an experience of hell is essentially meaningless. Or even different. There is no meaningful difference, noticeable difference, to me, when you're talking about something that's hellish. Hell is hell. It's a kind of absolute.

Amanda: Like I actually find myself pretty freaked out when I read some stuff by some institution survivors who would pick on the most gullible person in the ward and stuff, because I always was that person, so in that instance I really don't identify with their experience even if I do in all other ways.

Laura: Well, that's probably the case. Although I fortunately was neither a bully nor bullied, although I certainly witnessed bullying. Witnessing bullying was one of the many reasons I really rapidly opted for the fade into the background approach. I had had plenty of experience with it and actually by that time almost downright developing bully skills.

Amanda: Or like some of them would form at least rudimentary social networks to help block some of the awfulness, and so forth.

Laura: Well I was never any part of any social networks. But again, that may be reflecting the fact that I tended to be around people who were there no longer than thirty days.

I think also another thing that may be different here between the two of us, as far as personal, when I was first put in there, I had developed sort of a "tough guy" persona. To keep people away from me, to basically deal with bullies. So I no doubt would have put on much of my tough guy persona in order to try to avoid basically dealing with people there, and I don't know that you had said tough guy persona. <laughing> But I did, I was really good at looking kind of scary if I needed to.

I tended to look rather threatening. Not to mention the fact that the ward was very impressed with me when I arrived. The first time I was there, which was the only time I was around a lot of teens and the like, I would have gotten there anyway, but the last thing I did was pour a whole bunch of ink over the psychiatrist's notebook. I was sort of like a mini-hero when I arrived and the story got around, because the guy was a terrorist and a bully. And most people didn't have the courage to do anything to him or stand up to him or whatever. Although certainly there was a lot of discussion in the wards occasionally about killing him. So when you arrive as the hero, the courageous one, that tends to limit the likelihood that you're going to get bullied.

In the state hospitals, I guess I could have gotten bullied, but I tended to just disappear. And you can disappear in those places because they're very big, and there are very few staff, and merely hiding in the ward library will get you fairly well disappeared.

Amanda: What were things like getting out?

Laura: Hmm. Well, no matter how long one is in there, and I certainly wasn't in there very long, relative to most people at the time I should say. Even though I did not spend much time relative to other people at that point, if I had spent three hours, the experience is — to hit that floor, that floor that I described, in the human psyche, where one has sort of hit that kind of pit, where one has experienced hell, when it has gotten is bad as it can get, is obviously extremely traumatic. I don't think anyone can experience it no matter how long without being very significantly changed by it.

It's interesting because if you read the criteria for what creates the worst forms of post-traumatic stress disorder, apparently certain types of environments create the most severe forms of PTSD³, the description is perfectly that of a psych ward! It matches precisely that. There's no length of time in that kind of environment that's an okay length of time.

One is very much changed by the experience, and not for the better. And I think, I don't know how to describe it except to say that, the classic thing about soldiers who are home from the war, they hear any kind of sound and they jump, well I was very much in that kind of state. Where I was still responding to the ward. I was still going into, inasmuch as you can have them at all, ward survival mode, rather than necessarily reacting as someone else might to my surroundings.

Amanda: Speaking of soldiers home from the war, do you find any comparison to Vietnam vets who came back from the war and had much higher rate of long-term PTSD-type reactions simply because they were not valued people after they got home, and thus really got very little support and were treated often like monsters?

Laura: I don't know that I've really acquainted myself that much with that, but there was certainly very very much, just from my experience... people who have been in such places is, the first thing, is it is assumed that they deserved being there, that that was a good experience for them, that if they say otherwise that they are demonstrating that they are ill, and that if they describe what happened, giving details of some of the horrors in those places — and the funny thing is many of the horrors are not the obvious ones, I mean you know I can talk about these bad things, where they go oh that's bad. But the worst thing about those places is not those bad things. It's the day-in, day-out, every moment of the day degradation and lack of control of your life.

Because what one goes through, is so completely unlike anything the average person goes through, and the average person if they know about it has a completely different take on what that experience must have been like for you, compared to what it was, basically it was like wandering about the world, as an alien. You know, in a major, major, major way. Not even possible to discuss the matter because, who's gonna listen to you?

Amanda: And that's already having been an alien and still seeing a difference.

Laura: Yes. Yes. You know, any attempt to describe what might have happened there, I would've been basically told, "It didn't happen, you're imagining it..."

I'm very well acquainted with the fact that the rest of the world has no idea. They just have absolutely no idea how bad that is, how much it transforms one, or even what the experience is. It does transform one. Notice it provides that kind of an environment, where in order to survive, and I mean literally to survive, because there is overt and threatened violence, of which one has no defense, and this violence can come from any direction, and I mean any direction — I mean people will talk about it and they will sometimes claim that the violence was all on the part of the patients.

Well, the patients certainly could be violent. It was not however the patients I was most afraid of. And it was not the patients who engaged in the worst forms of violence. That I saw, at least. I saw a fair bit of ganging up and other stuff like that, but it was not patients that I was afraid of. They were not the threat, relatively speaking.

One very quickly develops a whole set of skills or lack thereof in some ways, just one ends up learning a whole bunch of ways of acting in the world that are completely unlike, they're necessary for surviving in that kind of environment, but they're completely unlike or irrelevant to, they don't belong in the outside world. They're sort of anti-skills. Take those skills out into the world and you become completely ineffective in a way. It does change one.

Amanda: How have you found the autism or autistic communities, and your relation to them, being affected by having had these experiences, or how have you seen it toward people who have had these experiences in general, good or bad, or both?

Laura: Well, having this experience does make me pretty much inevitably different. I'm not the same as other people. And I'm aware in many ways, whenever I deal with people, especially politically, I am aware that there is a whole... there is an experience that I have had that they have not had. And it's usually very obvious to me that there's how it is that they have not... it's just, I don't know how to describe it, I really don't. I wish I had a better way of describing it. But I can tell that I have had an experience that is not theirs, that my... oh gee.

There's, I almost want to call it a level of naïveté about what can be, in people who have not been through this. A kind of, I'm trying to describe something that I sort of know it when I see it but I don't know... I guess many people don't live with... I am trying to find words for concepts that... it's a level of naïveté. A failure to understand how bad it is or can be. A failure to understand how the issues are really that of life and death, a failure to understand the importance of... yes, a failure to understand. There's a level of unseriousness there, a level of too much faith in the system as it is now, too much misplaced faith in it. And too much, I would almost call it eagerness to try to prove or establish that they are not like these people almost. Like that these people are not them, that they're better than people who've been through that and in any case those people deserve it and in any case it was good for them, and in any case, you know, and if it wasn't good for them it was not a systemic issue. It was just, that one instance. That exception.

I wanna know why I can talk to people — my experience started what, twenty-some-odd years ago. I know people whose experiences date from ten years ago, I know people whose experiences date from this year. And why is it that each one of us reports the same thing? If these are exceptions. And my tales come from one part of the United States, I know other people whose tales come from other parts of the United States and I know people from other parts of the United States. Or different countries, even. Why would we all report the same things? Why would we all report the same experiences? The same phenomenon?

I think there's an easy answer actually, as to why is this whole thing is systemic. It's that when you build a system exactly like this, abuses are not just possible, they're inevitable. Of which I think the classic illustration of that is of course Zimbardo's Stanford prison experiment. And I think that's a wonderful illustration of how this is systemic; this is not an isolated instance. You're going to find this kind of phenomenon happening everywhere where you create something of this structure. While I may feel in many ways like an alien compared to the people who've not had this experience, I am in no way shape or form unique, because I certainly don't feel like an alien when I talk to people who've had this experience. Unless of course I'm finding differences that are just basic fundamental personality differences, which certainly exist.

With one exception: With people who have been in the system, and one of two things seemed to have happened to them. Either they were in the system in a situation where they didn't have a chance to see quite how bad it is, a brief pass-through, or, they may be experiencing what's called Stockholm syndrome. There are people out there who will tell you "Oh it's wonderful, it's terrific, it saved my life, it's all that wonderful stuff!" And again knowing what actually goes on there, and life-saving isn't usually the term I'd apply to it, nor statistically would anyone apply that term given the astounding... you know, why on earth would psych hospitals have high mortality rates? This doesn't make sense, unless what they're doing is murder. It does not logically follow. Because theoretically these are not conditions that kill people. I know why they have high mortality rates, I have no question why. But I'm sometimes quite impressed by the obliviousness that people have to these kind of facts.

It makes me different. I've been away from it long enough that I don't think I currently have any active sort of psych survivor behavior. But I can certainly spot them in other people...

Amanda: What kind of behavior?

Laura: Oh gee. I spotted it in you right away. How do I describe it? You were an obvious case of it. You had a kind of submissiveness that is not so much... it is a kind of submissiveness but it's not submission in any kind of normal way. Especially since you were oftentimes looking for where the rules were, so you could follow the rules. Without necessarily appreciating the fact that there weren't necessarily any rules for any particular event or... I don't know how to describe it. You were waiting or looking for the institution around you, as if, it's like, "Where is it, it's hiding here somewhere!" This is not necessarily a very constructive behavior out in the real world, because it is particularly passive in many ways, and because it is sort of like looking around for it. I really got a sense that you were looking around all the time for the rules. And terribly terrified that you were violating all the rules. And meanwhile not necessarily getting what actually should be done, because you were busy looking for the rules. It's a paradox there.

You had real problems with initiative, and since in the real world initiative is kind of what you actually have to do, the fact that you really had serious problems with initiative, combined with the fact that you were always looking for the rules, made for a really bad combination.

That's something I see, but I certainly wouldn't consider it the only thing I'd look for, if that makes any sense. Another thing, certainly, for you, was that you could not deal with the possibility that you'd done anything wrong without total panic. And that, simply telling you, simply correcting you in any way shape or form, created instant and total and absolute panic and terror and whatnot. And this makes perfect sense to me, because if you violate the rules, if you've done something wrong, in an institution, to the point where they'd point anything out at you, that means you're in deep danger. So you may very well find yourself at the end of life-threatening abuse. And therefore it was very difficult to communicate things to you at times because you couldn't deal with a correction just as a correction, because to you a correction meant a very dangerous situation indeed. Which isn't normally what it is in the real world, but it certainly is exactly what it is in institution-land.

Amanda: And then there were the apologies...

Laura: Oh yes. The neverending... to properly read the apologies, read them as "Don't hurt me! Don't hurt me! Don't hurt me! Please! Don't beat me up, don't tie me down, don't torture me!" Which, I obviously had no plans on doing any of the above, but again you were reacting to the situation as if you were still in the psych hospital. And that obviously wasn't the case, but again that's a typical PTSD sort of thing. And I certainly understand it very well, because that kind of an experience really makes an imprint on a person for life. You can't go through that experience of reaching that absolute bottom level of human experience without being seriously affected by it.

Amanda: As I recall it wasn't just actions I was afraid of, it was thoughts.

Laura: Oh yes, of course. I didn't go through that, but then I didn't go through brainwashing. You did. I fortunately spent most of my time in places where they kind of throw you in there, lock you up, and kind of forget about you. I think the only time I ever saw doctors at state hospitals was when I was being admitted and when I was being released. So there was nobody there playing warp-your-brain with me.

Except for one thing: People had occasionally attempted psychotherapy with me outside of those kind of places, and fortunately I was able to get away from it, because I had no special orders to make me go through it. And my experience is that that stuff really twists your mind around. Given a choice between psychotherapy and getting drugged, I would easily pick getting drugged. It's one thing to have your brain deadened — of course the third choice do neither of the above is my first choice — but, it's one thing to suppress one's thought and it's another thing to get it all twisted up.

Psychotherapy messes with the brain. It basically tells you up is down and right is left and whatever. And especially when one is experiencing that level of badness, one is very vulnerable. I mean it is precisely the kind of thing that people who try to brainwash other people, the kind of environment they try to generate, because at that point people are very vulnerable, and you're more likely to get them to do anything. I think it's not accidental that what's been happening to prisoners in Iraq, the things that they were doing to break down the prisoners, it makes a lot of sense. Terrorize people and humiliate them and make them feel as vulnerable as possible, and in fact people do tend to become emotionally and mentally vulnerable as well.

And so psychotherapy in that context can really mess one up. I mean all it takes is a therapist who thinks they know everything about you, they know all about your life, they know what you're thinking, they know what you should think, they know what you're experiencing, et cetera, et cetera, et cetera. And they tell you about what they know, and they tell you what you should know. Whether or not it has anything to do with reality.

They can really badly warp one to the point where, I never got to that point but I could easily picture it going to a stage where you truly did not know who you were. Just completely turning a person inside out and upside-down. And I think you had that experience. I didn't, but I can certainly see it happening. And that kind of manufacture of an unperson is... is just... very bad. And I think that's very much what was done to you. And I merely had enough of it to be aware of what could happen. And I'm very happy that I did not have to put up with much of it, courtesy of, hooray, bad insurance!

Amanda: How do you see autistic people in general as viewing autistic people who have been institutionalized?

Laura: I have very little doubt that people would be jumping over themselves trying to figure out how that autistic is somehow different and worse than them and not like them at all. I mean I find myself trying to do that myself. Because it's a defense mechanism. It's "They're different from me, it won't happen to me." That's basically what it is, it's "It won't happen to me."

And I think all of us would like to think it's not gonna happen to me. Or them, or whatever. I sure hope it would happen to no one. I'd be very very happy indeed to discover that right now, such an experience would never happen again to anyone. But unfortunately that's not reality. And I think people can get labeled and sucked into the system a lot faster than they think they could. For many autistic people, it simply takes being unemployed and getting overloaded in a public place, and bam! They're gonna be in the system.

Amanda: Have you ever found yourself in a situation where someone talks about autistics in institutions and they don't realize that you could be one of them?

Laura: Certainly online with parents who are busy saying how much the people, their child is different from us. We would never understand that their child is at risk of institutionalization. Of course, we would never, in any way shape or form have had such an experience.

Amanda: Is there anything we have not covered about the autism or autistic communities?

Laura: I think certainly there is an obvious movement from parents and from professionals — and I shouldn't say parents in general and professionals in general; I should try to narrow it somewhat, because I think we can find prominent exceptions to this statement — but there's certainly an effort by the current powers that be, or the self-described powers that be, to imagine that they speak for autism, that we have no right to speak for ourselves, et cetera et cetera.

If you're going to divide the autistic community as some people would, into good autistics and bad autistics or capable autistics and incapable autistics, I think there's a distinct danger and almost inviting for us to divide ourselves into autistics who've been institutionalized and who are in some form or another affected by this or who may seem institutional, autistics who are "them" — and then "us high-functioning autistics".

That is essentially the same division that would be imposed upon us from the outside, by those parents and professionals who want to cling to their delusion that they can speak for all of us. That they are the autism community. That we have no right to speak for ourselves. That what we say when we condemn their choice of torture for their child is wrong. I think that in some ways one of the fronts upon which this battle is fought, for our community is, those of us who have been institutionalized, and those of us who can "pretend to be normal". And I think it's very important that this division not be allowed to occur. Because it's precisely how we essentially divide ourselves, as these people would have us divided.

Amanda: And when you talk about the division, you're not saying there's no distinction, just that nobody's better than anyone else?

Laura: Yes, yes. I'm saying maybe a little more than that, I'm saying that we have to be inclusive. It's one thing to say "Well no one's better than anyone else, but we don't want you." And it's another thing to basically take an active stand against exclusion. Essentially, if we believe, as we do, that we are one community, then we have to act as if we are one community. And actively include autistics at — every autistic person, irrespective of their apparent or deemed functioning level, their history or lack thereof. Or even whether we happen to like them.

There is nothing that would thrill those particular parents and professionals more than to see us divide on institutional vs. non-institutional. Isn't that one of the basic divisions? That is precisely the division, that they keep telling us, "Well if I don't torture my child, with some form of behavior modification, my child will be institutionalized, but you people are not institutionalized. You people are different from my child; therefore you have no right keeping me from using electric shock on my child." Or some such nonsense. That is precisely the kind of thing they keep telling us.

And therefore I think it's imperative we not allow them to create that split. And of course that the community not allow whatever defensiveness it might have around that split, and of course as I said before I understand perfectly well that every time such a thing comes up, everybody's going to want to go, "But we're different. I'm different. It won't happen to me, I'm different!" It's very important not to allow that split.

Amanda: Do you think that's why people say a lot, "We're not 'retarded', we're not 'crazy'," and stuff, that it's not just a fact but a fear?

Laura: At times, yes. There's two dimensions of it. There is the fact that a great many of those "low-functioning" folks are being underestimated intellectually, and they're certainly not crazy (but you know even if they were...) I do suspect that a large number of folks would be saying "We're not like them." It's both, you know if you're talking about a situation where you've got your usual professional sitting there taking so-called low-functioning people, failing to offer them a reasonable assortment of possibilities for communicating, and then dismissing their ability to make decisions about themselves, I think a statement to the effect of "We're not 'retarded'" is meaningful here. But then it's also possible to wave that around as "We're not like those people."

Amanda: What kinds of institutions did you work at?

Laura: Aha! My role as <evil voice>staff</evil voice>. Well one, I was at a group home for the "mentally retarded". Technically it was supervised apartments. Translate it to group home where everyone has separate apartments. So that was basically it. That was my one experience as staff.

Amanda: How long did you work there?

Laura: I think I lasted approximately a year before I was fired. I think. I might add I'm proud of why I was fired, but anyhow.

Amanda: How did having the experience of being institutionalized help or hinder you as a staff person?

Laura: I think it helped a great deal, although I suppose since I managed to get myself fired eventually it could be argued it hindered me. Certainly my boss might have argued that. But I think it helped tremendously, because I saw my clients, I knew exactly what they were up to, I saw all those various coping behaviors and the like, that you use, and all those institution skills, and I understood what they were up to, and I understood what they were up against. And you know, I did my very best in my brief excursion into staff-land to help them.

Amanda: And how did being autistic help or hinder you, if at all, in that work?

Laura: Hmm. That's a good question here. It certainly hindered me in terms of my ability to do all of the wonderful social things that might have protected me from the staff eventually deciding they wanted to get rid of me. Although they would have decided that one way or the other. Given what I was up to, I think I would have gotten thrown out of there one way or the other. But I do suspect I wasn't very good at playing neurotypical and playing staff and playing games that would've made me look normal to those people.

In particular, my best effort to looking normal was usually when they were off being social. All I knew how to talk about was my cat, because that was the only thing I could think of that would be like small talk. And apparently one of the criticisms of me when they were busy doing their report was that I didn't socialize properly with staff and that all I did was talk about cats. I did have other interests, but I was trying to tell what was small talk, and that was the only kind of small talk I knew of.

On the other hand I had no problem socializing with the clients; that was easy. I don't think they expected me to be properly staffy or something. I don't think they expected appropriate staff behavior. All the usual social accoutrements and whatever. Since at least one of them was autistic, officially on paper, I think that these people were probably pretty used to dealing with autistic people. They didn't seem to expect me to seem normal.

Besides, as I said, I could relate to what they were going through. And they knew it. Part of my reviews were always that my strong point was "relates well to clients". In my own mind I'd sort of laugh. I didn't tell them that I was essentially a client. But I certainly thought to myself every time they did those kind of things, that that was because I was a client. I was a client in disguise. I felt kind of like a secret agent for the clients of the world.

Amanda: And was that being autistic, having been institutionalized, or both?

Laura: Quite possibly both. I really don't know. The problem with one of those kind of questions, is that there isn't like an autistic me, and a me that was a client once, and a me that owned a cat once, and a me that plays with computers, and a me that... because they're all me, and I have a hard time making those divisions. Because they don't exist. Not authentically. They're artificial divisions, in a way, because all of that is me. And there's only one of me. Reminds me of when people expect me to make a distinction between back pain caused by my brand-new joint problem, suspected rheumatoid arthritis, and back pain caused by flatback syndrome. Well, I only have one spine. You know?

Amanda: That makes sense. I'm thinking though, can you imagine an autistic person who had not experienced institutionalization going in there and understanding what they were up to as easily?

Laura: No. Absolutely not. Because they would not have any real clue. At all. About the institutional experience. I think if an autistic person just walked in there, they'd have had the problems with staff. They would not have had any special abilities to relate to the clients, including the autistic client.

Amanda: So they could have easily just gone in and made the same mistakes as any staff would as far as misinterpreting clients' behavior?

Laura: Absolutely, because you have to remember that the kind of thing that happens, the brutalization of clients, does not come from the individual per se. It's part of the system. It's just inherent in the way it's all designed. And you can pretty much plug everybody in, and if they don't understand it in a deep way, if they don't get what's wrong here, they will simply plug themselves very neatly into the staff role, and they will act staffy. And they don't even need to have social skills enough to figure out how staff are supposed to work, because it's just built into the role. I don't know how to describe that very well, but it's built into the role. It's built into what you're expected to do.

Amanda: What sort of training did you get as staff as far as managing clients or whatever they call it?

Laura: They called it Behavioral Management of the Aggressive Client. I even have my lovely BMAC certificate. I had to do that course every six months or something like that, they considered it possibly the most important in-service. It basically amounted to a little martial arts course in which you learned how to throw people to the ground. That was what they considered managing clients.

Amanda: You talked once about being taught how to chart.

Laura: The way you had to chart was you always had to make it clear that the problem was the client. If you charted an incident to indicate the problem was in any way shape or form the staff or the system, it was sent back to you to make sure you blamed the client. And they were very explicit about that.

Amanda: Is there a particular view of clients you're encouraged to have as staff?

Laura: Oh my. It was pretty offensive. I mean what was said, sometimes, outside of earshot of clients, was just appalling. I mean the manager of my building was referring to them as "retard" — "retard" I think was one of the terms he would use, they had other words, but they were derogatory words.

And the overall attitude was that these were things we're managing. Keep in mind what behavioral management means to them. It was basically they were managing people and the object was to make sure these people obeyed them and didn't cause any trouble. And that was essentially what they were going after. And occasionally they would be completely, they were occasionally quite explicit about seeing these people as inferior. Which again is not terribly surprising; it seems pretty consistent with the Stanford Prison Experiment and other such stuff.

Laura: Of course what's written up, and everything that's said in public, and if you'd have gotten some promotional material from the ARC...

Amanda: I was going to say, how did they dress it up?

Laura: It's dressed up about how, things about "client independence" and "self-determination," all this wonderful stuff. And "achieving potential", and all that wonderful crap. While it's not actually going on. Also you can't forget "caring" for people. Actually if what happened bore any resemblance whatsoever to printed material, both internally and externally, the material we were trained on, the written material we received during training, and the material handed out to parents generally on the outside who were considering placing their children in these kind of situations — adult children I might add. The literature. If anything that was being written is true, those would've been wonderful places. But none of it was true. I mean I was very often informed that "This is the way it's written, but this is the way it's actually done." This is what's written, this is what's actually done. They would read off policies to us and the same person practically in the next breath would violate them. But we had to know what the official policies were, the official line.

Those institutions will grab onto whatever the current fad is, claim it for themselves, and twist it beyond all recognition. Name the trend, they will adopt the language and twist it beyond all recognition. I've oftentimes observed that the real difference between the supervised apartments that I worked in and any of the state hospitals I was in, was basically a coat of paint on the wall. You know, you change the color of the paint, paint it nice, and plunk a different picture on the wall or something, and hey, it's a "supervised apartment" setting.

They put a coat of paint on the wall, and bang, it's supposed to be different now. And they change the words, so as to match what everyone wants them to be, and then they go ahead and do what they've always been doing. One of the reasons I really hate it when organizations change names and labels and stuff like that. Because you can't change anything by changing the name except maybe the stationery. Why not call it what it's always been called? Don't play games with names.

I don't think the word self-determination should be used by absolutely anybody who is not themselves developmentally disabled, or otherwise disabled. That term should not be used by their caregivers. Ever. Because the caregivers do not have a right to it. Or so-called caregivers or whatever you want to call that. It's debatable as to what's provided is comparable to the word care, in the usual definition of the word.

I mean one of the things that I very vividly remember, to give you an example of some of what went on there: One of the guys there had a girlfriend who was also in some kind of group home setting. And they decided they wanted to get married. The official policy that we all learned was that these people are free to do what they want to, that it's their choice, but the person at the head of the house just basically said, "No, he can't go visit her anymore. No, they will not get married. Period." Although she theoretically had no right to do so, and basically her argument was that this would just be too much work for us.

Which is typical of what goes on, the official, wonderful label versus the actual reality. They're not the same. Ultimately those organizations are run for the convenience of the staff. And that's exactly what you'll get when all power lies with the staff.

Amanda: Yes, someone I was talking to about this was disabled, but wanted to drive a line between "us aspies", by which they for some reason included me, and "those mentally retarded people in institutions".

Laura: Yes. Well I worked for a year with "those mentally retarded people in institutions", I would say institutions do tend to draw a line between people, though not a line that should be respected. Any more than institutions should be respected.

In the sense that the line that was drawn, was essentially people who understand and have been through it, and people who haven't. On the one hand, that's a very real division, because I don't think anyone who has not been through it can truly understand the experience. I think they can learn about it, they can learn to understand it, they certainly will never know it, per se. It's not something that they will ever know. The only way to understand it at that depth is to have been through it.

I don't think however that's a line that should be respected in that I don't think the community can even afford to pull out people and sit there and go, institutionalized/not-institutionalized, good-autistic/bad-autistic, person who has right to speak for themselves/person who doesn't, person whose parent may torture them/person who's okay. Um, no. That's what I mean by that line shouldn't be respected.

Amanda: How did you get fired?

Laura: Well this one was actually not perhaps my favorite undermining, but I guess it was the last straw for them. Remember our clients had no ability to shop for themselves, so whatever the staff saw fit to buy them was what they ate. Whatever the staff saw fit to buy them, that's what they had to eat. This one woman had a kidney problem and had to be on a low-sodium diet. In fact I think eventually she died of a ruptured kidney or something. But anyhow, she was also one of the people who was being supervised. She had been in that horrible place in New York that Geraldo Rivera was famous for exposing. Willowbrook.

She was one of the Willowbrook clients, and therefore there were regular inspections to see if the court orders were being followed with the Willowbrook clients, which were basically "Set them free, treat them right." And I knew an inspection was coming soon. And I also saw what they were buying for her, which in no way shape or form resembled a healthy diet for somebody with a kidney problem. And so I charted it. They were not happy. Sat there, wrote it up in their logs, documented the fact that they were in fact feeding this woman a high-salt diet. Bingo, no more job. I would bet bingo, no more logs, although I don't know that, too. Three guesses as to whether that log got deep-sixed and replaced with a fresh new highly altered one. And the first two don't count. But yeah. That's how I got fired.

My very favorite undermining, because it actually helped someone tremendously: One of their clients was a guy who was known to be deaf, but he was also officially "way too retarded to understand how to communicate. He could not learn sign language. We tried, he would not communicate." He did write, however, lots of words down. He was always writing things down. And one fine day it hit me that he was writing things down as he saw them. In other words, deaf folks, write these sort of visual impressions of things, you can sort of shift your mind into seeing things just visually and throw out all the grammar you know, and then write things down like that. That's kind of like what a deaf person who hadn't learned grammar would write like. And I realized that that must be what he's writing.

So he came in, sort of gesturing and stuff like that one fine morning, and — unfortunately I worked the night shift, so I didn't get to sabotage as much as I would like to, but then I would have worked only about a week or two there — but anyhow, he came in doing all sorts of things and I wrote him a note. And he wrote back his words, and I wrote more stuff responding to it assuming that that was what was going on. I just sort of mentally pictured, look at it visually, and what I saw was he was asking about a truck outside that was making a lot of noise, and I responded to that, and this was clearly what was going on. He responded back. In fact, he started crying because apparently this was the first time somebody actually tried to communicate with him, as in listen to him. Because people would merely tell him what to do, they simply wouldn't listen to him. And basically the short answer is he appears not to have any real ability to learn sign language. He didn't have any problem communicating in the least bit. It's just that people had to start being flexible about letting him communicate in his way. <sarcasm>Wow, what a concept. Listening.</sarcasm>

Which apparently is much more than systems can do, listen. There must have been countless professionals who must not have realized what he was doing with his notes. When you think about it, people coming up to you and handing you notes, logic tells you they must be trying to communicate with you, but evidently that's a little more than professionals can deal with, because apparently if communication was not "proper", according to whatever they wanted, it was not communication, or something like that. So anyhow, the staff all wanted to know how — "Oh wow, you can communicate with him, how do we do it?" They actually had a meeting for me teaching the staff how to communicate with him. The thing is of course all they wanted to do was know how to tell him what to do. Which is precisely the problem. That's exactly the only thing anyone was ever interested in doing was telling him what to do so he would do what they wanted him to do. They had no interest whatsoever in listening to him so they would know what he wanted. That was not what they wanted to know. That that was sort of the foundation of communicating was beyond them.

And I don't know quite what I said, but I know perfectly well why he was always acting like he did not understand why other people were writing to him. And I was not going to tell them this plainly, I mean I think I was going to let them with their attitude continue to believe otherwise, that he was having a problem, or something. Tell me — okay. You're deaf. You're getting pushed around by all these people telling you how to live. They don't care in the least bit what you want to say, they don't care what you're interested in, they don't care what you want, all they want to do is tell you what to do. Do you (a) follow their orders, or (b) continue to act "deaf"? Good common sense — of course he acted like he didn't understand a word of what they were saying. It was the only way he could be himself in that situation.

But the end result of all of this was, I believe they decided that he might not have been "not actually retarded" or "not actually very retarded", and eventually he was set free. So apparently the only thing that made him "retarded and in need of institutionalization" was that nobody'd ever bothered to listen to him. But I was kind of glad that I helped get him set free. Although I was gone by the time they set him free. So that's my favorite story.

Amanda: How do you feel about the fact that he gets set free, and that's good and that definitely should happen, but at the same time other people aren't free because they can't get away from the diagnosis?

Laura: The thing is, he no longer fit their diagnosis in a way, but I think though the reason if you look at it from another perspective, it's not necessarily their diagnosis. It's a matter of, well if they listen to them, they can't very well keep them anymore. If that makes any sense. I think in a way if they hear people, in a meaningful way, as in they hear people, it's a little hard to keep them. In a sense what they need to do is to hear everyone else too. Regardless of diagnosis. The problem was that once they started hearing him, they couldn't keep him anymore. And I think in its own way, they need to hear everyone else too and realize they can't keep any of them, either. But yeah, there is always the thing of, "Well you don't fit their diagnosis so you can go free."

Amanda: Like in my case I'm supposedly out because I'm not schizophrenic, which in part is not diagnosed simply because I stay away from the sorts of people and saying the sorts of things that worry people.

Laura: Yes. Yeah. Well in a purely practical sense, I think anybody who can get any loophole to get out of that system, can and should use any loopholes they have. Because they have no right to keep anyone, so therefore anything and everything that will keep someone out of there, including if necessary lies, it's perfectly fine with me. And that's a purely practical position. If they don't want to keep autistic people, fine. If they don't want to keep people without insurance, great. If they don't want to do anything, fine. Whatever twist of that system's mind or lack thereof, whatever the rules are that decide that someone is not suitable for their system, fine with me. But the bottom line is that no one is suitable for their system. I see a continuity there.

Amanda: But of course there's the flip side where if I were to run around now that I'm out and say, "You can't lock me up because I'm not schizophrenic," then I'd expect a bunch of people with that diagnosis to get a bit pissed.

Laura: Yeah. Yeah. I think the thing is it's the attitude. It's how it is said. It is one thing to claim whatever loopholes you can find for your freedom, seeing it from the perspective of, and no one should be there. Or another thing to say, "Well I shouldn't be there, but it's okay if you're there." And that's a distinction, it's a difference in perspective. There is no one who should be treated like that. There are no excuses for treating people that way. I think human freedom is a very essential principle here. And certainly basic human dignity, and the right to live without force. It's pretty fundamental to me. And I can't think of anybody whose condition warrants the use of violence against them. There's not a lot of things... The only exception might be that I agree that someone who's pointing a gun at me, has officially given me permission to do whatever violence I need to do to protect myself, or something similar to that.

But that has nothing to do with a condition. There is no condition on this planet that justifies treating people that way. It doesn't exist. There is none. And when you recognize the system is inherently abusive, that the way it is structured it must be abusive... what I find wild is that you sit there and you read psychology, and all this wonderful psychological research. And it is known that systems constituted as this thing is are inherently abusive. That you create something like this, you get abuse. It doesn't matter who you plug into the system, you get abuse, because such a system is always abusive. They know this. They know what kind of system creates the worst forms of PTSD. The description matches this system exactly.

It's like the very profession, on the one hand, has all this information that tells them that this is an inherently abusive system, that it is inherently destructive, not constructive, not therapeutic. And then on the other hand, blissfully ignores everything that it supposedly knows because somehow its abusive scenario is special, its abusive scenario is somehow exempt from the very same principles that it already knows about. Well yeah if you make a prison camp like that, this will be bad for people, but if you create the same scenario and you call it a hospital, or a group home, or something like that, it's okay. Well it's not okay. It's not okay no matter what label you put on it.

Amanda: I just read a book by a guy who talks about the laws in California, which are that you can only hold someone if they're a danger to self, danger to others, or gravely disabled. And he doesn't like that because if people have a way of getting food out of a dumpster or something they don't consider that gravely disabled and they "turn them loose". And he thinks this is bad because he wants to be able to keep his inmates longer, supposedly to help them, and he has all these wonderful stories about how he has helped people with shock treatments and Haldol and stuff, and all these horrific stories about people on the streets who really have no clue how to take care of themselves. And he acts like those are the only two options so he acts like the state hospitals need to be brought back to imprison people, even people who are saying, "I'd rather live on the street than be locked up like this." I'd like your take on this.

Laura: Well, my take on it is I actually spent considerable amount of time on the streets, as I'm sure you know. A few odd years, more between two and threeish. I think I starved for three years and was homeless for two. In any case, neither state is good. Both conditions... you know there's a third option here: Provide people with the services they need to live in the community freely and properly? That's option number three, which nobody cares to look at. But if really the world was that black and white, which it is not, if that was really all the two options, by far homelessness is better.

And the reason why it's better is because, as a homeless person, you're learning weird skills, you're learning survival skills that don't necessarily apply to the world of the "homed" person. But the basic underlying thing you are learning is self-reliance, independence, individual initiative. Because you constantly have to do that, you constantly have to take the initiative to survive one more day on the streets. What you learn in institutions is exactly the opposite — it's to take no initiative, to take no chances, to take no risks. You learn skills that in the real world are completely counterproductive.

I can look at the skills of a homeless person and see a smooth transition to the skills of a person integrated into society. The skills of a homeless person are not that far removed from what you need in the real world. Whatever you want to call it. These are all unfortunately parts of the real world. It'd be nice if they weren't, but they are. But what you would, as a fully integrated functional member of society, doing all the things, with homes and foods and all that other good stuff that you're supposed to have, with your needs actually being met, being homeless — even to this day I feel like I've learned things being homeless. I feel like there were aspects of homelessness that were very positive, that I actually value. And things I consider positive about being homeless that I wish I had retained, like perhaps a little less materialism.

I can look back at my period of homelessness and actually see very many positive things, skills I developed, skills I learned. There are aspects of homelessness that are actually positive. In fact, it's not homelessness per se that I get upset about. It's actually hunger where I start getting really bad feelings. There's really a lot positive to say about homelessness, strange as that may be. There's a lot more to be said about actually having a home, but you know, food, that's a lot more to be said, but homelessness is not a 100% negative experience. And the types of things one learns through it are not completely destructive things. The kind of things one learns in institutions on the other hand is purely destructive. That kind of terrified passivity is in no way useful in the world. And interesting that homelessness, although not good, the part that's really not good is hunger. It's not good, but it doesn't reach that horrible basement of human experience. It doesn't get that far. It's bad. It's not beyond comparison bad. Some absolute badness.

So no question about it, given a choice, I would pick homelessness, hands down. It's not even a contest.

Amanda: Do you find that people often don't want to hear about institutions when you do talk about them, or even try to discourage you from talking about them?

Laura: Oh absolutely. People do not want to hear about them. People don't want to hear about what they do, and if they do hear anything of what I have to say, they will cheerfully tell me that I'm wrong and that I don't know what I'm talking about. Which is awfully interesting for people who've never been in them to know about them. But lots of people who've never been in them seem to know more about them than I do, or so they think.

Or people who've been staff only. Who may not fully understand the level of 'blindness' that entails. I honestly know, when I was playing staff, that the rest of the staff had no clue. There's a lot of forms of passive resistance in an institution. Lots of forms of passive resistance. And it is designed to fly under the radar screens of the staff. Because if you were open about it, you would find out rather rapidly that that wouldn't be okay. So these guys were always doing that kind of stuff, and I knew exactly what they were doing, and when I would see it, I would do my very best to make sure that what they were doing would succeed. I would try to cooperate with what they were up to.

The staff had no idea the level of resistance. And staff, they talk among themselves, and reinforce each other's views. The very structure of the system makes it look like staff behavior is the right thing to do. It's like, to do your job you have to get into staff mode, and again, it's been documented very well in psychology that people rationalize their behavior. People will sit there and explain to themselves why everything they're doing is right. And you can really construct a really good argument in your own head about how what you're doing is right, if you have no idea of how wrong what you're doing really is. If you know that the nature of institutions is to create a kind of basement-level human experience, then you can't sit there and use your rationalizations so well.

There are ways of doing it, which is to say that yours is better because yours doesn't include the more obvious forms of abuse. Well, you may not literally be beating up your clients, but that doesn't mean that you're not beating up on their souls. From a staff perspective, you would very easily fall into an enormous amount of self-delusion. And a lot of that comes from the fact that you have this pressure to get people to do certain things. You are expected to get Client A to be at Location B at Time C or something like that, with Level of Order D. And the real-world client may not wish to do that.

Something people don't necessarily appreciate is the value, the right and the importance of the freedom to do wrong and make mistakes. It's very important that people be able to screw up. And that freedom is very important, it sounds strange unless you've lost that freedom. Unless you've got people out there who don't want you to make a mistake, who will make decisions for you so you don't make a mistake, you might not appreciate the value of that. But anyhow you have all this pressure as a staff person to do all these things, and rapidly it becomes — in fact the very role of the staff is basically, "How do I make the clients do things? How do I make the client do what I want them to do or stop doing what I don't want them to?" Your very role is to control, and rationalizing it is very easy. It's very easy to rationalize it, and not see it for what it is.

Amanda: Did you ever see clients sort of take on the role of staff, in a not-good way?

Laura: I don't know that I saw that. I wouldn't be surprised if it happened, because again the only role model for behavior that someone deep in institutions sees, is staff. So naturally the thing that people are going to learn in institutions is how to oppress others. Not that they're able to assume that position generally, but that's the thing they're going to learn. Or at least one of the things they could learn. They could also learn how to be a good patient. Meaning, how to be ineffectual, and ill, and disorderly, and all that stuff. Pretty much how to oppress one's fellows.

Amanda: Well we had other role models. The people who just went completely berserk on staff and didn't hide it. And the problem of course was that they were the ones who got tortured the most so there was a price, and in my case they isolated me after awhile.

Laura: Yeah. Okay. That role model.

Amanda: They said I was "disrupting the milieu".

Laura: <laughing> Good for you. Ah, yes. You know, if someone was disrupting the milieu at Auschwitz, I'd consider them quite a hero, so... and the funny thing is, yeah I do remember patients like that, and you know, they were heroes. Because, you know, I remember, even if I was not courageous enough to follow their example, and I remember others who would not have followed their example, but I do remember there was a lot of respect and admiration for them.

Amanda: For me it wasn't courage. It was that I was so far into this weird kind of despair and thinking I'd die or they'd keep me forever anyway, I just... so in that state you can do almost anything. As long as they can't make you care about what happens to you. Which is what they did to me after quite awhile.

Laura: Okay. Well that makes sense. Because unfortunately everything that happens in that kind of level of, anything quite that desperate a situation, is going to be itself desperate. But that said, it didn't stop us from admiring you guys.

Amanda: It didn't stop me from admiring the people who went further than me, too.

Laura: Uh-huh. George, the deaf guy, was actually one of those, in that place. Everybody, the staff was absolutely terrified of him. Except me of course. <laughing>

Amanda: But really after I did that and they did some stuff I became quite the model patient and they could do whatever they wanted to me. So I'm not entirely sure it worked in the end.

Laura: Uh-huh. Oh well. Nonetheless, you guys were indeed the heroes of the ward. But yeah, George would... George beat up a lot of staff members. Unfortunately he also got beaten up a few times too, for it. My supervisor actually put him through a wall. My attitude was kind of, well I kind of wanted to hit the staff too. I thought hitting the staff there made a lot of sense. Somebody not listen to you? Push you around? Abuse you? Yeah, it makes a lot of sense to hit them.

Amanda: So what do you think about the ethics of client-on-staff violence in those situations?

Laura: The thing is, people in that position are truly, truly, they are in a state that most people never, mercifully, experience. My only thought on violence toward staff is that unfortunately most of it is non-productive. I can't possibly sit there and say "Oh they are evil." Any more than I could look at a concentration camp prisoner who kills a guard, so-called gratuitously, as evil. With no hope of escape, or something like that, no, such a person would not be evil.

I think my main concern would be that most such violence ends up being non-productive. How do you... but then, you know, getting out of those places, what do you do that would be productive? Especially that given, generally they're drugging you, pretty seriously, and the ability to muster your intellect to figure out how to escape is pretty low. You really are reducing people to the point where all they can really do is lash back at you. So, you know, I guess in my dream situation violence would be one of many tools used to get out of there, or to end the system altogether, but unfortunately violence doesn't do much, it's not very productive there. It's something I can understand, but it's not especially productive. You know, somebody managed to, say, attack and put a staff in restraints, en route to a successful escape, that would be wonderful, but I don't think most violence ends up that way.

You created a situation where violence is inevitable, and when the people who are at the greatest disadvantage in this violent situation, respond in kind — when they respond violently to being treated violently — how do you say that's bad of them? Probably non-productive, in most cases, it is. I haven't heard of stories of people tying down their staff members and escaping. But that'd be wonderful if I ever heard one of those, I'd be thrilled. I just can't look at that situation and possibly find it astonishing that patients would act violently towards staff.

Amanda: I did steal a restraint once. It's about a yard away from me.

Laura: Well again, wonderful. That's one of the things that goes on, that I know you and I know of and... That's one of those little acts of defiance, those under-the-radar-screen acts of defiance that go on all the time in those settings. And like I said, I'd see them right away when I was off playing staff because I know it. That's what I've done. I've been a part of that culture. And those things are not trivial. They're really sort of little acts that sort of keep, help someone keep their humanity. In the context of something that's utterly dehumanizing. They're not frivolous. They're essential. One of my favorite things to do during my first thirty days, was playing a Crosby Stills Nash and Young record that contained the line "Open up the door", over and over and over again.

Amanda: Oh yes. We played "Hotel California" by the Eagles.

Laura: <laughing> Perfect.

Amanda: Did the experience change your experience of being alone? Like being stuck in quiet rooms for a long time when you're not seeing staff much, did that change at all being alone on the outside?

Laura: Not for me, but then I didn't spend a lot of time in quiet rooms relative to you.

Amanda: Okay. Because things like that made me and someone else I knew pretty terrified of being alone for quite awhile.

Laura: Well that would definitely be a round of PTSD — alone equals quiet room!

Amanda: Do you think things have changed since you were institutionalized to the point where being institutionalized now is okay?

Laura: Not. At. All. Because I have heard from people, across generations, and as I said across distances and across generations. And they all report the same thing. And I'm not surprised that they report the same thing because the problem with institutions is not in how things are carried out. It's in how they're designed. In the first place. In the very concept of an institution. If you have an institution we're going to have this phenomenon. It's plain and simple, you're going to get this. To not get this and care for people who need some help, you're going to need something entirely different than what we currently have, and it's not going to be something with a new coat of paint. Not "Same thing, new label."

¹ A small room used to isolate inmates, often with some kind of mechanical restraint devices in the room.

² A single room which inmates of some institutions spend a good deal of the day. Rumored in some circles, oddly, to no longer exist, but still quite definitely existent.

³PTSD is short for post-traumatic stress disorder, which is psychiatric jargon for a specific set of emotional, physical, and mental responses to an excruciatingly terrifying experience, especially one that evokes survival-level fear. The Autism National Committee wrote an article on PTSD from autism "treatment" which is available here: http://www.autcom.org/ptsd.html. An official psychiatric view on Complex PTSD, which relates to totalitarian systems and is the kind being described above, is here: http://www.ncptsd.org/facts/specific/fs_complex_ptsd.html.