[I wrote this in response to a Dave Hingsburger post. Andrea Shettle asked me to post it here. 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.
There are institutions everywhere. It’s inescapable. Parenthood’s a societally sanctioned institution. Virtually everyone has been under the absolute authoritarian control of a guardian/parent; many carry physical and/or psychological scars from the experience. And it’s evident how the power structure of churches, schools, universities and other outside institutions can so easily victimize a person to their core. As a disabled person who has spent pretty much my whole life on the outside of the types of institutions you’re speaking of, I’m getting no sense of what it is that’s fundamentally different. Some may have options but my perception is a great many lack access to resources and are left at the whims of others who damage or skew their self-worth. I can’t imagine any rights movement making widespread change of that. I had a work experience where everything seemed fine for a couple years and then, some of the types of things you’ve written about insidiously reared their ugly head with the supervision. Human nature made our society what it is. It isn’t until if/when technology renders the family unit as we know it now obsolete (and assists us in other ways) that people may be free of institutional abuse.
Pingback: International Day of Mourning and Remembrance: Institutionalized Lives of People with Disabilities–Forgotten Lives and the Ones Who Fight Back « We Can Do
thank you thank you thank you.
People can understand violence and it’s easy to talk about. You’ll even get sympathy a lot of the time; usually people will admit that at least in that instance something wrong happened. This really surprised me when I figured it out because the level of hostility or just apathy towards me when I talked about what were the biggest problems was just incredible.
it’s also strange that people don’t understand… like if people are being restrained in a way that they suffocate to death and that’s acceptable, what happened before to make that acceptable? Stopping people form being killed is incredibly important, but a culture of violence doesn’t just appear out of nowhere and there’s more than just keeping people physically alive.
MJ: I think Amanda has said that some parents run their homes like an institution and you’re right that a family could be said to be an institution in the wider sense. I think you could make an argument that the way society raises children is damaging in a whole lot of ways. However, most parents allow their children more freedom than they would have inside a prison or, yes, a mental institution. For most people it’s a very different experience.
I’m one of those who have been reflecting on the old institutions following Dave Hingsburgers International Day of Memory and Mourning but what you have said is so true, we think because the institutions are gone that the nice new specialised care facilities are different – your experiences make us to think again. Thank you.
Most parents want their children to grow up and separate. Institutions want to break people down. It’s not usually the same thing (although it can be.)
Reblogged this on Watching UHS.
Yes. Yes, exactly.
I think this is one of the most insidious ideas that keeps the status quo going (quoted from MJ, though not meant to single them out, because this is everywhere): “Human nature made our society what it is. It isn’t until if/when technology renders the family unit as we know it now obsolete (and assists us in other ways) that people may be free of institutional abuse.”
If we continue as a society to have such low expectations of human nature and how humans should behave toward one another, these patterns will keep repeating. And repeating. And reinforcing the idea that maybe things have to be that way, and that dehumanization and abuse are inevitable. So maybe we don’t even need to try changing things, if it’s just the way we are as humans. Lots of harmful universalism there, including that families are inevitably organized and function socially in certain ways–and that all societies work the same in these ways, in a more general sense. These ideas are part of the society we live in, and actually serve to lock us into bad patterns.
It doesn’t have to be that way. We have the ability to change all of this. Which is depressing in itself, since so much change in base assumptions about the way the world works–and dismantling an awful lot of institutions which bring out the worst in people’s trained behavior–would be necessary.
This post had me crying, BTW. The ‘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.’ bits hit particularly close to home.
I had the same problem with that comment, that urocyon also had, but wasn’t able to articulate why. It just seemed like some fundamental assumption was “off”, and like there was a sense of “don’t even bother” to it (even if it would never be explicitly thought or said). The sentiment also reminded me of a reader who contacted me to tell me that she had got from my blog the idea that raising children is brainwashing, and that I’d see it if I looked closely enough. Suffice to say I never meant that and never saw that as a realistic assumption about the world.
Institutions are the last thing to change in a society. It is as if their roots run too deep to change course. They always lag years behind the change in hearts and minds of people. It takes at least 20% of mass society to think a different way to produce the grass roots promotion that will effect change in policy in the end. The change often comes from one person saying or doing something that sets off others thinking and talking and organizing. It sometimes takes a book or a film to get an idea across to many and in the forefront of their minds and then organizations who take up the banner and promote it. It takes capturing hearts as well as minds and momentum. That is why the telling of individual stories is so important. That is why blogs and these blog themes are too. People are often not aware of the power dynamics involved in institutions but have some preformed idea of how things are that is not accurate. Once awakened by the reality and outrage becomes the emotion at the inequity and damage, change can happen, albeit almost always slower then desired. It has to happen with definition and recognition of what is going on and then ideas of change. A new model has to be created and done with lots of input from people who have been affected by the faulty systems that now exist.
I might add that some of the most innocent looking institutions that proclaim to be there for good intent are some of the worst offenders. Lurking below the outer coverings can be some of the most vile.
I finally remembered to write a comment. I was never in an institution but I get it in a much smaller scale. I was treated since I was a child by nice professionals that used a strange paternalistic kindness that made clear that I never mattered and was not capable of much and should never be allowed to decide anything, until today I can’t tell what was wrong and no one understand why I am scared. Sometimes I try to convince myself I am imagining things about the people that were just trying to help me because I am not allowed to be right. Not the same but I think I understand the use of power that causes this and the idea behind institutions belongs to people that work outside them as well.
Is this what you’re getting at?
At first I found this (and your other posts about institutionalization, mostly on tumblr) hard to reconcile with my recent very positive-seeming experience in a psychiatric hospital for a week. After all, it did make my parents finally see that I had “real problems” (whatever that means) and accept that I was “really trans”, introduced me to some wonderful people from whom I learned a lot (i.e. the other patients), and prevented me from killing myself.
I’m sure there are different issues involved, since I’m talking about depression and anxiety rather than autism, and I was only there for one week, but I think there was a sort of similar helplessness and infantilization inoculated into us by the hospital environment. The way our schedules were strictly regimented in a way they hadn’t been ever in my life since elementary school. The fact that in order to even LEAVE THE BUILDING we had to get special permission from our doctor. (And we were never allowed to leave the hospital campus. Not even those of us who had been there for weeks or months were allowed to ever leave the hospital campus.) The complete isolation from the outside; no internet, no cell-phones, no ability to communicate with others except by landline (and due to various psychiatric and neurological difficulties, I can’t do phone conversations either fluently/competently or without severe anxiety; I wasn’t the only patient with this problem). Most of all I remember the black autistic man of about my age who was put on Abilify “to stop his aggression” and had been institutionalized repeatedly for “aggressive” behavior that would almost certainly be considered completely nonthreatening coming from a small/slight, not visibly disabled, female-perceived white person like myself.
And then it occurs to me that the solution is for society to focus on preventing people, especially ‘undervalued’ people (trans people, POC, disabled people) from wanting to kill themselves, rather than to focus on locking people up when they try to take the only way they know out of their situation (although as a lot of your posts have pointed out many disabled people don’t even have the privilege of their lives being considered worth saving rather than preventing).
very sobering, thanks. It reminded me quite a bit, of public education as well.
Great post! people placed in institutions, not to help them, but to isolate them from so-called “normal” people. And, it is meant to remember people who have been “put away” supposedly for “their own good,” people who others think “cannot live in the community” as if being human were not enough to qualify one to live among other humans.
This reminds me of the “Why I should listen to the teacher” sheets I was often given to fill out in middle school after being sent to the quiet room (a small fluorescent lit room with a beanbag to rest on-there were no physical restraints involved). I’ll admit I was no ray of sunshine then, but come on-what angry 11-year-old would answer that question in any seriousness?. Solitary confinement, institutionalized humiliation-that’s what prisoners in maximum security prisons are subjected to, and we all know how many upright citizens prison turns out…
Wow. Horrific. Made me seriously think about the way I treat the people in my care and under my control (children and an Autistic adult.) Thank you.
Linked to this on my blog.–http://chaoticidealism.livejournal.com/
It brings back some rather distressing memories for me, though nowadays I can deal with it. My experiences were at a cult-like institution that called itself a school, but wasn’t. It wasn’t even for disabled people; it was one of those fundamentalist schools… the kind that calls Bob Jones liberal. They took your ability to think from you; they broke up your friendships. You couldn’t trust anybody. I very nearly lost my faith because they used that against me, too. And I was one of the “good kids”. It’s one of the most beautiful places I’ve ever seen–not a scrap of litter, everything clean, everything perfect. Nothing messy. Even the teachers’ handwriting was perfect. And… I still have nightmares that I’m there and I can’t get out. Makes me wonder how widespread this “institution” thing is–beyond just places for the elderly and/or disabled–where else this happens, and how it can be stopped.
What you said made perfect sense. I have been continuously institutionalised in the community my whole life, primarily due to Autism and to a lesser degree mental health problems. But I question how simply shutting them is going to change. I was forced to attend a mainstream school and I would not wish that education on my worst enemy. Even Hitler did not deserve what I got in my eyes. I could talk about it forever. One thing I did get was the one on one aid. EVERYWHERE I went, even the toilet, I had an adult following me. I was never ever allowed for one second to be even one metre away from them. If that is not instituationalisation I don’t know what is. In fact I know of parents who have made what for them was a heartbreaking decision to put there child in a special school as the child would have some level of independence, and they saw it as there job to help a child to develop independence. At the mainstream school, sure they get to sit in a classroom with other kids, but with an adult sitting right next to them ALL the time. They are not and never will be in the present day allowed to be normal kids within that school. And the other kids see something as wrong with them, primarily because of the aids presence. While I am all for inclusion to say that simply providing aids is the answer could not in my opinion be further from the truth. Of course it also fails in recognising that many of these children do not learn as the average person learns and they have no access to specialised teachers, what they have are aids. A child who is blind for instance, needs in the very early of school someone who can teach them WHY that set of dots is an A. They need a specialised teacher who can provide them with that. But that is seen as discrimination as they need to be included and so inclusion means sitting them in a classroom with an aid, who could not teach them for the life of them. And we say but we put it all in braille. But in order for Braille to be of any use, they have to be able to read braille. We put a sign language interprepter in with 3 year olds in preschool and the other kids and the kid concerned has no concept of how to use it. On top of that they don’t understand why the hell they can’t just learn to listen like they can. Interpreters are fine in later years of school and college, but not at preschool. It would be like saying you go out and enter a relationship with a deaf person and have an interpreter in your bedroom for intimate encounters. I could not read or write until the age of 15. At the age of 15 I was sitting in a mainstream classroom learning the alphabet while the rest of the class studied shakespere? How was that inclusion and how could I possibly gain from that. I felt as though I was a retarded idiot and I was not and could not be included in the class. In order to be included, I actually had to have some idea of what was going on, and to be able to participate in it. At the age of 15 my parents hired a private special education teacher to tutor me and finally I had someone who could see inside of me and find out how I learned. Within 12 months I understood how to learn and was in classes for the gifted. But the mainstream education didn’t do that. It made me feel totally retarded and institutionalised me with full time adults following me everywhere I went, and watching my every move, and not in any suttle way at all. Total segregation is wrong, but shoving all kids in together and simply handing them an aid is no better. Until we as a society are willing to admit that we have no idea of the best ways to teach people with disabilites then I can’t see anything changing at all. What I can say is the current policy is no better than the past and is just as if not more damaging. I personally lived through it. The reality is that we need to be willing to have an honest discussion about this and I don’t see that happening anywhere. I do not want to see kids segregated in special schools, but equally I don’t want to see them suffering as I suffered, and as I see happening every day of the week. An aid is an institution. You yourself said that (staff following you) and yet you also seem to advoate for them in saying that all kids should be in the same school all the time? How do we put such children in standard classes and expect them to cope alone. They can’t do that, but then again and aid is not the answer either??
I think that some of the solution would be to teach children how to advocate for themselves, how to make good use of the various services and technologies that let us make our own decisions even when we can’t do those things ourselves. It would probably be a pretty big paradigm shift, to go from an environment that encourages compliance to one that encourages self-determination; but it would be worth it, and I think it’s possible because I’ve seen quite a few parents doing it for their children. If we could only remember that it is possible to teach a child to be assertive without also tempting them to become rebellious and bitter, as many parents seem to fear they might become if they were taught that their own opinions and feelings were as valid as those of authority figures.
The funny thing about that is that the only way to practically ensure people will become rebellious and bitter is to not give them any freedom. I do think though that in order to adequately teach children to think for themselves, you absolutely do have to accept that this is one possible outcome. If you don’t accept that, then what you’re giving people isn’t freedom because it’s conditional on them thinking and feeling a certain way.
Reading this brought me back to my childhood and VAC(Vt. Achievement Ctr.)and other schools camps that were supposed to be there for US. Your description of being oppressed in your soul, feeling that sickness when you wake up from dreaming about being there and having to give up your heart and soul to just physically survive. Not survive internally, you hide part of yourself to keep from having those taken along with you pride, your, humanity, your self worth. When I was assaulted, raped, treated like I was nothing, less then nothing. That by stepping on me they could make themselves better then I was, by caring for us they were angels treating those poor cripples. (vomit goes here). I had to hide precious piece’s of my humanity to keep from going insane, and by having those small piece’s I could rob them at least of those parts of me. In that way it seems we were all treated like were 2 years old, or less. Patted on the head and told to do it the RIGHT way, which was there way or punishment followed. Locking us in a room with out access to a bathroom and when we soiled ourselves we were degraded and emotionally assaulted. I remember those times with a certain amount of terror, anger, anguish, and pray that I never have to go through those times again. But I know so many of our people today are having those things happen, mere survival is all they have. Degradation is their daily bread, treated as soulless heartless beings by those with the control. Things to be manipulated in whatever way the providers of their daily care wish to. We all know that telling is not done because retaliation will follow swiftly and painfully. I pray for those who are still where we were, pray for myself to not ever be there again, and to work endlessly, tirelessly to close those doors forever. That no person with a disability has to endure those cruelty’s again we are worthy of choice, choice for housing, care, support, love, kindness, and most of all equality in all things! Those memories keep me fighting and knowing that those who have gone before us fought the good fight keep us going. As hard as things can get, at the very least we are not there, and we can work to keep ourselves and our peers from every having to be forced into the arms of our tormentors again.
I’m so glad to see that the horrific treatment you receive does not and has not broken your spirit or robbed you of your intelligence. You’re a gifted woman and have a way with words. I’m shattered at how inhumanely you and others are treated. God bless you for being so strong and sharing your experiences with us. Thank you for teaching me that this tragedy is still happening today.
Pingback: The Problem With Institutions | Disability Courses 2013
Pingback: Independent Living | fitorehyseni
Pingback: Link: “What Makes Institutions Bad” – Site Title
Reblogged this on Rambling Justice and commented:
By Mel Baggs