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8:36am
June 2, 2015
Nightmares
How long will the nightmares last? How many more nights will they have me back in their grasp? In these dreams I am strapped once again to the devices. I feel the fear in my stomach. I see the same faces that I left behind, living the same day over and over. Popsicles sticks, counting, anxious faces, darting eyes, working to earn praise, then starting over again. Sometimes I fight the staff back with a confidence I didn’t have before. My favorite is when I told Matthew Israel to his face to go fuck himself. He did that nod, instructing the staff to shock me, but it didn’t hurt. That time was not a nightmare with a moment of victory. But mostly, the dreams are terrifying. I get shocked, and it hurts. I can’t escape. I can’t dial the phone to call my mom for help.
I have been through a lot of shitty programs, schools and situations. But the Judge Rotenberg Center wins the distinction of being the only one I have nightmares about. I don’t think they will ever end. Because that pain is etched in my mind. But maybe that’s ok. It keeps my anger fresh, and my longing to make it right. I never will forget the feelings or the pain. At least now, I can wake from those dreams and look around at my new real life, where I feel safe and happy.
23 notes
8:36am
June 2, 2015
Part of my actual official recording (behavior) sheet from Judge Rotenberg Center. Just some of the things I was shocked or it in trouble for. There is much more too. Under MDIS2 is I get shocked for having “5 IVB1 in an hour” at bottom shows what IVB is- talking to self, laughing etc. JRC claims they only shock major behaviors. Liars. See MDIS1- I also got shocked for “touching telephone, tic like body movements (I have Tourettes), hand movements in front of face, jumping up and down etc and much much more. This is only part of my sheet
8:34am
June 2, 2015
The Day I Spoke Up
One of the last houses I lived in before I finally got out of that place was one I hated the most. The supervisor of that house had a really bad mean streak. I did my best to stay on her good side because if she didn’t like you she made sure your life was hell. Mostly I got along with her and bit my tongue when she tested me. But I was always stressed at that house, especially when she was in charge. I remember one day one of the other girls commented that we were being tortured. She got angry and said that we didn’t know what torture was, referring to her home country. But she was wrong, We knew torture very well. She had no empathy towards what we went through every day mentally and physically. She had the nerve to try and make us feel guilty for commenting on our own abuse.
It was a Saturday or Sunday. We were all sitting in the living room having some free time. One of the other residences called saying that a certain girl in our was on the list to go on a field trip with them. So the staff had to get her ready to go. She needed help dressing and stuff and she didn’t have any socks on. Staff didn’t feel like going upstairs to get the girls own clothes so they dug through the laundry that was downstairs with us. When they were giving her the socks I noticed they had another girls name on them. She was kind of my friend, and not even thinking I said, “hey —- aren’t those yours?” She said “yes”. Now I just want to say I didn’t do anything wrong. It was against the rules for staff to give our clothes or property to other students, although they did it all the time. And it was free time so I didn’t need permission to speak to my friend. But the supervisor got really mad that I said that. Her face turned nasty and my stomach dropped. She told me “No talking out!” I tried to hold it in, but the oppression, the fucking oppression, the power tripping staff who saw us as less-than. The policies and the “program” that stripped us of our basic rights to freedom of speech and freedom from cruel and unusual punishment. The program that denied my intelligence and personhood. I couldn’t take it another day. I came right back at her, saying “I was just helping my friend”. She says “no arguing with staff”, and it went back and forth from there. I knew I was going to lose all my privaleges by this point so I just kept talking. There was nothing I was doing on my program that she could shock me for. But she searched and searched my sheet. Finally she stopped and called the monitor from next door over. They had to call the monitor over to shock us ever since the prank phone call fiasco, so I knew what was coming. And I knew it was for a lie she made up. She lied and told the monitor I was tensing up, and they shocked me.
I was so incredibly frustrated. I was at my breaking point. Staff did whatever they wanted and got away with it. And we weren’t even allowed to defend ourselves or speak up. At JRC, even if a staff is pinpointing you wrong, you are expected to accept it and the punishment, and then later write a “business letter” to your case manager telling them what happened. They teach us that we are punching bags and must accept all the shit done to us with out so much as a peep. That is teaching us to be victims that don’t matter. I was sick to my stomach. I had to get away. I requested to call my legal guardian but was denied. I felt so unsafe there, with her. I knew she could make up any lie she wanted to hurt and shock me.
I gathered the strength, and ran up the steps and out the front door. As soon as I hit the cold winter air, my lungs tightened up from my asthma and I barley could make it across the icy front yard. I just crossed the street and I got grabbed from behind. It was the supervisor, and I felt like I was in a fight for my life. I couldn’t let her take me back inside, because now that we were outside, she could say I did anything and there was no camera to prove I didn’t. I knew she would. She tackled me into a snowbank and was sitting on me. I was trying so hard to get up. Cars were going by, and one finally stopped. A man got out, and told her to get off of me. I was yelling “help help”. She told him she had a right to do what was because I was in a “group home” and she was in charge. I kept asking him for help, and he got between us and made her get off of me. I remember I hugged that man, and I felt safer with that stranger then these staff I had been stuck with for years. He had called the police and when they came she kept arguing that she had a right to take me back to the house. But thankfully they wouldn’t let her. The police called an ambulance which took me to a nearby hospital. I felt so relieved to be away from her, like the world off of my shoulders, I had been so scared. They put me in an empty room at the hospital, and soon after, the supervisor arrived. She tried to come in the room with me and I freaked out. the security guard told the doctors that I was calm until she came near me, and they made her get out. After a while the weekend administrator came. She told me because of what I did I had to move to another residence with more staff. I actually felt relieved. I would be away from her.
I am so thankful to that stranger who stopped to help me. If he hadn’t pulled her off of me and called the police, she would have gotten me back in that house and shocked the hell out of me. It is amazing to me how all those strangers had more common sense and compassion then the staff and JRC program. It shows that what society considers wrong, is excused at JRC. Strangers saw me as more human the staff did. I was lucky that day, but there were many other days when I wasn’t.
Okay the following is not meant to take away from the impact of the story above at all, it’s just a reminder because of the symbolic super-importance the JRC has taken on in the minds of many people who have never been there or never been anywhere like it. This should not detract at all from the horribleness of the JRC or the experiences of the people who have lived there or have been at risk of living there. (I’m glad I didn’t have different parents, I would’ve easily been a candidate as a teen and young adult.)
So this is for everyone who wasn’t at the JRC:
Just a reminder that no matter where you are, these things are happening in your backyard, right now. You probably don’t even know how to recognize half the institutions in your area (many of them look almost like ordinary houses, these days), and your eyes may even glide over some of the more obvious ones as background scenery. And things just as bad or worse are happening there, too. The JRC sucks but there’s very little unique about it. Focus on its uniqueness only contributes to the torture of others at other places. Closing it may not even help some of its inmates: Many will be sent to other institutions, and those institutions may do more damage than the JRC did for all anyone knows (and that can happen whether or not the person is consciously aware that the place is worse: it’s very common to be in a Stockholm Syndrome situation or one where you think a place is better because it lacks one specific thing that happened to you at another place, meanwhile it’s actually worse than the other place and you only realize it ten or twenty years after the fact when you look at the impact both actually had on your life – the worst place I was at had no locks on the doors, no bars on the windows, the windows were regular glass, no restraints, but it was utterly diabolical in ways that are far worse than things that other people would think are “objectively” worse… similarly many people I know who’ve been in both private and state institutions would take the state institutions any day, which causes surprise and disbelief among people who’ve only been to one or the other or neither – there’s no measuring stick you can easily use to say “this one is the worst” and I worry when JRC is singled out as the worst place anyone could possibly be… it’s an utterly horrible place, but unfortunately for disabled people everywhere, it’s one among many thousands, probably (I am not good at numbers but I think thousands at least)… so if you care about shutting down the JRC, please care about shutting down all the other places too, including the ones that are deceptively beautiful-looking but sometimes the most awful of all).
1:00pm
August 2, 2014
“
You wonder how a system so sophisticated, so technologically advanced, can treat people with such cruelty. Of course, it is not the system at all. It is one doctor, two nurses, an aide, or an orderly. It is people who lock people into seclusion rooms, and it is people who affix the leather cuffs or the chains or the gauze strips. It is people who do this and who do not have the courage to confront the unimaginable. It is people who believe they must do what they must do and that what they must do is the expedient thing. It is people who justify torture. “We’re only trying to help. We don’t know what else to do,” they say, with their refrigerated voices.
Does it really matter what else you do? Or is it enough to acknowledge evil, which is indifference to suffering and indifference to the sacredness of the human person? The only way to fight evil is to unmask it, to speak up, to refuse to participate in it, to not be indifferent.
But to us, the hostages of evil, the feeling of endless time is crushing. For us, even when the door is opened, the restraints loosened, we remain captives. We can never forget.
” — Rae Unzicker, “From The Inside”
4:34am
July 29, 2014
“
He is taking a course on Marxist ideology.
He says, “The only real solution is to smash the system and start again.”
His thumb is caressing the most bourgeois copy of the communist manifesto that I have ever seen,
He bought it at Barnes and Noble for twenty-nine U.S. American dollars and ninety-nine cents,
Its hard cover shows a dark man with a scarved face
Waving a gigantic red flag against a fictional smoky background.
The matte finish is fucking gorgeous.
He wants to be congratulated for paying Harvard sixty thousand dollars
To teach him that the system is unfair.
He pulls his iPhone from his imported Marino wool jacket, and leaves.
What people can’t possibly tell from the footage on TV
Is that the water cannon feels like getting whipped with a burning switch.
Where I come from, they fill it with sewer water and hope that they get you in the face with your mouth open
So that the hepatitis will keep you in bed for the next protest.
What you can’t tell from Harvard square,
Is that when the tear gas bursts from nowhere to everywhere all at once,
It scrapes your insides like barbed wire, sawing at your lungs.
Tear gas is such a benign term for it,
If you have never breathed it in you would think it was a nostalgic experience.
What you can’t learn at Barnes and Noble,
Is that when they rush you, survival is to run,
I am never as fast as when the police are chasing me.
I know what happens to women in the holding cells down there and yet…
We still do it.
I inherited my communist manifesto,
It has no cover—
Because my mother ripped it off when she hid it in the dust jacket of “Don Quixote”
The day before the soldiers destroyed her apartment,
Looking for subversive propaganda.
She burned the cover, could not bring herself to burn the pages,
Hoped to God the soldiers couldn’t read,
They never found it.
So she was not killed for it, but her body bore the scars of the torture chamber,
For wanting her children to have a better life than she did,
Don’t talk to me about revolution.
I know what the price of smashing the system really is, my people already tried that.
The price of uprise is paid in blood,
And not Harvard blood.
The blood that ran through the streets of Santiago,
The blood thrown alive from Argentine helicopters into the Atlantic.
It is easy to say “revolution” from the comfort of a New England library.
It is easy to offer flesh to the cause,
When it is not yours to give.
Catalina Ferro, “Manifesto” (via dialecticsof)
I feel like people do need to remember that there is a very real, very painful, very human element to the word “revolution”.
(via nuanced-subversion)
11:59pm
June 27, 2014
Forced eye contact
When I was fifteen and sixteen, a few days a week I walked out of the house, into the barn. In one room of the barn was a psychologist. I did not look the psychologist in the eye. The psychologist told me I would not get away with this. He took his hand, karate-chop style, and hit me in the knee, in a spot calculated to hurt. He continued to hit me in the knee, telling me that once I looked him in the eye, he would stop. The more I looked away, the harder he hit. The more I looked towards him, the softer he hit. Until finally, I looked him in the eye. I remember nothing of what happened after I looked him in the eye. This was in 1996.
3:31am
June 9, 2014
➸ This is how I feel when I read a lot of posts about the Judge Rotenberg Center.
Close the Judge Rotenberg Center. For the love of everything holy, close the Judge Rotenberg Center. Stomp it into the ground and dance on its fucking ashes. But. You won’t be done. You’ll just h…
So the above link goes to the permanent home on my main blog, of that really long post I wrote about why the Judge Rotenberg Center is only the tip of the iceberg when it comes to closing down bad institutions, and how focusing on the “one bad institution” can make you lose sight of what actually makes an institution bad, and the fact that many of the “good institutions” could be doing far worse damage. (Someone referred to the damage done by “good institutions” as “subtle”. It’s not subtle at all, it’s grievous gaping wounds in your soul. It’s just not recognized for what it is. That’s different than ‘subtle’. Most damage done by 'good institutions’ is seen as simply mental illness on the part of the inmates, and that is seen as cause for building more and more 'good institutions’, which creates a nightmare scenario. Basically all your most utopian institutions are dystopias at heart, and many of them are capable of damage at least as bad, if not worse, than the institutions that everyone agrees are bad.)
Anyway, that’s the post’s new home, so if you want to direct anyone to it, that’s a good place to look. It’s extremely long, but I couldn’t think of a single idea that I could cut out to make it shorter. The problem with trying to explain things that people really have never heard of before, is that it takes a lot of… length, because you have to tell them what they think they know, explain why what they think they know is wrong, and then tell them what’s actually going on. And this is definitely an “everything you know is wrong” kind of post.
3:17am
June 8, 2014
➸ What I think when I see twenty bazillion posts about the JRC on my dash.
Close the Judge Rotenberg Center. For the love of everything holy, close the Judge Rotenberg Center. Stomp it into the ground and dance on its fucking ashes.
But.
You won’t be done.
You’ll just have eliminated the most obvious of a huge number of places that torture and abuse their patients in…
Holy crap I had no idea I’d written that. It’s worth reading the whole thing, even though it’s long. I should think of putting this on my main blog.
6:35pm
May 28, 2014
Man cooked to death in scalding shower as punishment by prison guards | Police State USA
A torturous “punishment” session turned fatal for a mentally-ill prisoner, when prison guards forced him to stand in a tiny shower stall while being blasted by scalding hot water until his skin began to shrivel away from his body and he died. Fellow inmates say he begged for his life before collapsing in the shower.
Darren Rainey, 50, died while incarcerated a the Dade Correctional Institution. He was serving a 2-year sentence for a victimless crime; possession of cocaine. At the time of his death, he had only one month to go before his release.
Rainey, who suffered from mental illness, was accused of defecating in his cell without cleaning it up. The Florida’s Department of Corrections often comes up with cruel and imaginative punishments for prisoners — allegedly ranging from starvation diets to forcing prisoners to fight so the guards could place bets.
Rainey’s punishment was to stand confined in a narrow chamber, being blasted with hot water and steam, and left to suffer there for over one hour.
“I can’t take it no more, I’m sorry. I won’t do it again,’’ Rainey screamed over and over, the Miami Herald discovered from a fellow inmate’s grievance complaint.
The Miami Herald reports that it was DOC Officer Roland Clarke who was on video placing Rainey in the shower at 7:38 p.m on June 23, 2012. He was found dead at 9:30 p.m.
When Rainey’s body was found, his skin was cooked to the point where it was coming loose from his body, a condition known as slippage.
The facility then did its best to cover up the death. Sources say that it was alleged that Rainey had a heart attack, yet DOC refused to perform an autopsy. The official cause of death has never been announced.
Conveniently, the camera outside the shower “malfunctioned” right after Rainey was forced in.
The Rainey investigation has remained open since 2012, with no explanation about why it has taken so long. No one has been charged with the death of Darren Rainey.
“Two years is a very long time to wait to find out why your brother was found dead in a shower,” said Rainey’s brother, Andre Chapman.
When a fellow inmate tried to provide information to police and the media about the Rainey case, he was threatened with punishments of his own. Numerous other inmate complaints paint a disturbing picture of what justice looks like in Florida’s prisons.
Justice seems to be a fleeting concept in a society where people are imprisoned for non-violent, victimless offenses, and housed by sadistic torturers who themselves belong in a cage.
(Photo Credit: istock/Dan Bannister)
Don’t you fucking tell me racism doesn’t exist.
11:11pm
May 10, 2014
I can’t be part of any culture that says, explicitly or otherwise, that you have to have always been perfect.
Where if they find, somewhere in your past, a statement that goes against their current ideology, then you are and forever will be a Bad Guy.
Where growth is not allowed because the possibility of imperfection at any point in time is the same as damnation, basically.
Where even minor imperfections can mark you Evil For Life, so major imperfections don’t stand a chance, no matter how much you have changed in the past, no matter how much you want to change now.
Such a culture won’t produce change, it will just produce a sort of intense policing of everything about a person.
And, I believe, secretly the people who are the most intense about policing others, are the ones who know they have the most to lose because they themselves have a lot to hide if they are to take part in such communities. Just as some of the most intense people I’ve ever seen who were rooting around trying to find people faking their disabilities, were faking or exaggerating certain things themselves. There’s a pattern there – you hide your own problem by jumping on everyone else’s problems so vigorously you hope nobody sees your own lurking there in the background.
If you want people to change, you have to allow imperfection, past and present.
If you want people to change, you have to believe that change is possible.
If you want people to change, you have to believe that even people whose transgressions are severe, can change if they care enough and try hard enough.
I know that many, many people who are not easy on others about past transgressions, nonetheless love what Dave Hingsburger has to say. I love what Dave Hingsburger has to say. Most of the time, what he has to say on disability ethics is worth a hundred academic disability-studies scholars.
He also used to write the behavior programs that resulted in skin shock on a DD woman so severe as to leave burn marks on her skin. (This was not at the JRC, the JRC is not the only place to use skin shock, this is why targeting the JRC alone won’t get rid of it.)
If he hadn’t made such a huge name for himself, many people around here, hearing that part of his history, would never give him the time of day again. Some may still not, and for that I’m sorry, because I don’t think turning away from his words will do anyone any good or make any movement purer or better. But I had to point this piece of his history out to make a point:
He shows how a person can genuinely change. He shows how a person can do something unforgivable and still look himself in the mirror every morning. He shows how you can go from doing something terrible – doing lots of terrible things on an ongoing basis – to dedicating your life to doing the right thing and atoning for what you’ve done wrong.
And because of that I feel like he’s got more relevance in his toenail than the most ideologically pure people who’ve never done anything so obviously wrong, have in their entire bodies.
And I wish people could see that it’s not just “we should forgive people who do things wrong and then change, if they’re sincere”. It’s more like “we can learn things from people who do things wrong and then genuinely change, that we can’t ever learn from people who claim to have always done everything right since they were born.”
6:27am
December 21, 2013
What I think when I see twenty bazillion posts about the JRC on my dash.
Close the Judge Rotenberg Center. For the love of everything holy, close the Judge Rotenberg Center. Stomp it into the ground and dance on its fucking ashes.
But.
You won’t be done.
You’ll just have eliminated the most obvious of a huge number of places that torture and abuse their patients in the name of treatment.
Skin shock is showy and scary and it makes a good story and it makes it easy to see what is hurting people.
But people can be hurt just as bad or worse without it.
People can be hurt just as bad or worse by places that don’t brag about the torture they inflict on their patients.
People can be hurt just as bad or worse in the institutions everyone loves to love because they’re so beautiful, they have such wonderful grounds, they seem so loving.
You can’t understand, maybe, why this is true.
You think, maybe, that abuse, trauma, PTSD, CPTSD, can be measured in volts.
It can’t.
You think, maybe, that the destruction of lives is proportional to the visible destruction heaped on the body.
It isn’t.
It’s so much more complicated.
I have a friend who gets really upset every time some over-the-top institutional horror story makes the news. So do I, for that matter.
One part of it is because, obviously, it’s horrible, and we’ve both lived through horrible things. She’s been to both state and private institutions (and found private ones worse, by the way, so much for stereotypes). I’ve been to private institutions and private residential treatment facilities and what I like to call ‘community institutionalization’… too hard o explain in such a short space.
I spent most of my teen years in the psych system (and to some degree was exposed before that) and sometimes in mixed psych/DD settings, and pretty much all of my adulthood in the DD system. I have physical disabilities that could easily put me in a nursing home, and developmental disabilities that qualify me for admission to an ICF/MR. Staying free takes up more of my energy than I’d like.
I’ve been abused and tortured and traumatized and almost-killed in all kinds of settings, inpatient and outpatient.
At one time in my life, with severe self-injury, I’d have made an ideal candidate for the Judge Rotenberg Center. I am not somehow different from people who go there. You’d be surprised at the people who go there and how not-different they are from many people you’d imagine would never go there.
(That’s true of all institutions. The people who live inside them, and outside of them, are identical in every way. The only difference is how the support takes place. When it’s support at all and not just hell on earth.)
Anyway.
What I want to say is.
One reason that my friend and I get upset by these stories is because we’ve lived through some horror stories of our own.
Another reason that we get upset by these stories is this fear we have, that we don’t think is irrational at all.
We fear that when people focus on the outrageous, the flamboyantly awful, then they won’t see the way the outright ordinary, even the seemingly wonderful, can do the same degree of harm, or worse.
The worst harm in institutions is, by the testimony of many, many inmates, not just the physical torture that takes place in some places – sometimes above-board, sometimes secretly. Often it’s things you can’t even name. Those things are happening in the JRC too. Those things hurt people there as much as the torture does. Nobody is doing a huge campaign to shut down those things.
Many people, if the JRC is closed, will simply be sent to other institutions.
They will then be told that they are lucky and that those other institutions are better.
They may come to believe those other institutions are better.
Those other institutions may actually be better. But they may not be. It may just be that the badness has seeped down deep into some underground place where you can’t count it, can’t name it, can’t even describe it, and therefore it…. isn’t there.
And they will continue to get hurt by that. They may not realize they’re getting hurt by that. They may attribute the hurt to themselves, to their mental illness, to anything but the environment that is causing or contributing to it.
And that hurt may be harder to recover from than the JRC.
How do I know this? Because while I was not in the JRC, I was in mental institutions that physically tortured me (not with skin-shock), and was then moved to a 'better’ place that tortured me in harder-to-explain ways, and hurt me in deeper places, and I learned to say and believe how 'better’ they were while living how worse they were deep down. I still live with how worse they were.
And I know many other people who have the same story to tell.
And I know that unlike me, many people who live at the JRC won’t be able to escape the institutional system the way I was. My situation was unique to me. I didn’t get out because I was better off disability-wise than others, I got out because I was in a particular, unique set of circumstances. The difference between people on the inside and people on the outside is not their disability.
But once you’re in a long-term institution, it’s harder to get out. I was lucky, I was usually in a string of short-term institutions (even if I spent longer time periods in them than other people there), then when I was in a longer-term one, my residential facility closed and it became useful to them to decide I was recovered enough to leave, and to “transition” me to a “less restrictive environment”. Which was still a hellish environment, mind you, but more chance of freedom, there, too. And I had people around me savvy enough to advise me how to take the chances I had.
And most of the people in the JRC won’t be leaving to freedom, if it gets closed. They’ll go to other institutions. And however grateful they are to be out of the JRC, they will get hurt in those new places. Because that’s what institutions do. Invariably. You don’t have to know you’re hurt to get hurt there. You don’t have to understand how deep the hurt goes, to get hurt there. You just have to be there. And you’re often the last person to know how deep it goes, right down to the level of your self and identity and everything important to you. You can get turned inside out without anyone laying a finger on you.
Nobody will ever be able to pinpoint the institution that inflicts the worst of this sort of damage on its inmates, because this sort of damage is, by its very nature, secretive, even from the person it’s being inflicted upon. And because nobody will be able to pinpoint the worst of it, there will never be a massive, targeted, decades-long campaign to close the worst of these institutions. Anonymous will never catch on and take part. The world will not be outraged by the damage inflicted, no matter how devastating.
And if the people damaged by these institutions show that they are grievously psychologically injured by these institutions, people won’t connect it to the institutions. They’ll connect it to the nebulous concept of 'mental illness’, and quite possibly try to construct more of the exact same kind of institutions to deal with it. Nobody will notice that the 'increased mental illness’ is correlated with the institutions themselves. Nobody ever does notice.
Nobody catalogues this kind of damage. Few people study it. Few people understand it. Few people can see when and where it is happening. Few people can understand the damage in the first place. Most people who describe the damage won’t be believed.
Worse than merely not being believed:
When we describe the damage inflicted upon us, we are invariably described as ungrateful for the advantages that we had in not being in “a place like the Judge Rotenberg Center”, or not being in “a state institution”, or not being in a place that the world universally recognizes as horrible. Because some of the worst damage is inflicted on us in places that other people see as wonderful.
They will ignore the abundant testimonials by ex-patients who have experienced a wide variety of institutions. There are tons and tons of people who have been to both state and private institutions and found the private ones immeasurably more damaging, because the extra funding means extra ability for staff to mess with the heads of the inmates. There are tons and tons of people who have been to both state institutions and group homes and found the group homes immeasurably worse. There are tons and tons of people who have been to both locked private traditional-institutions, and unlocked residential facilities and group homes, and found the residential facilities and group homes immeasurably worse. There are tons and tons of people who have been physically tortured at one institution, moved to another institution where no apparent physical torture was present and found the second institution immeasurably worse. There are people who have been moved from 'bad’ institutions everyone loves to hate, to wonderful paradise-like 'intentional communities’ where they had, in the eyes of others, everything they could possibly want, and described how much more horrible the intentional communities were, the ones formed with the best intentions of parents and staff.
People ignore this.
People ignore this completely.
No, worse.
People ignore this and they utterly disparage any current or former inmate who says these things. They say we don’t understand what we’re talking about. They say we have no vision. They say we have no comprehension. They say we don’t understand how good we have it.
And it’s even worse for people who have only been to the 'better’ (in the eyes of the public) institutions, and complain about how awful they are. They’re told that they don’t understand how good they have it, only much worse. And they are told they should be grateful for what they had, that they wouldn’t last a day in a 'real institution’.
Hell, i’ve been told I haven’t been in a 'real institution’ just because I was in locked, private, short-stay institutions a lot of the time. (And one private long-stay institution that was on a ranch in the country so it didn’t count as an institution, somehow.) Never mind that, at the time, I was referred to as institutionalized by everyone in the system, including people in these institutions… apparently it’s not an institution until it’s a big-campus state institution.
So people who’ve only been in much fancier, much 'better’ institutions than I’ve ever set foot in, are told this only ten times worse than anything I’ve ever gotten for talking about my experiences. Especially if they’ve been in the pseudo-utopian farm communities, or the 'intentional communities’, or things like Camphill, which are all billed as not institutional somehow even though they totally are. You can’t change an institution by changing the shape of the building and slapping on a new coat of paint.
Anyway.
People who have been through the worst kinds of hell that institutions can provide are not believed, because the worst kinds of hell that institutions can provide are not things that people outside of institutions can understand in any way. People outside of institutions want the blood and gore and skin shocks to prove a place is horrible. They don’t want to understand that there are things more horrible than any of that. They don’t want to understand. They just don’t want to understand.
And people in institutions often don’t want to understand either. I didn’t want to understand what was happening to me. I wanted to believe that now that I wasn’t being tied down and tortured on a daily basis, then I was free. I wanted to believe that really badly. You have a vested interest in believing you’re someplace better now, that things will get better. Sometimes believing things are better is your only defense against how awful things are.
But once I really got out, and I had to deal with the intense emotional and psychological injury I’d been done by all of these places, the truth gradually began to dawn on me. It’s easier to heal from physical wounds than it is from psychological and emotional wounds. It’s easier to heal from the obvious horrors than the hidden horrors that lurk behind the scenes, turning you inside out and upside down, piece by piece, one bit at a time. You can heal, but I can tell you that it’s not being tied down, not physical or sexual assault, not even the horrifying restraint practices I sometimes endured, not the physical pain, that continues to haunt me. I mean, it does, to some degree. Things like that always do. But there are things that have damaged me deeper, in ways I can’t even articulate.
And my friends and I, when we see coverage like this, we’re so afraid.
We’re afraid of the 'better’ institutions.
We’re afraid of the public’s idea of what a 'really bad institution’ is.
We’re afraid of some of the disability community’s idea of what a 'really bad institution’ is.
The JRC is a really bad institution. It’s doing that horrible kind of damage at the same time that it’s doing the physical damage. I can see that. Because it’s got enough funding, it can really fuck with people’s heads.
But you could force the JRC to remove every piece of physical punishment it owns, even restraints. And it would still be horrible. It could even become worse. Because when places can’t focus on hurting your body, they have more time to focus on hurting your mind. And hurting your mind does the most lasting damage there is.
The JRC needs to be shut down, period.
But there are places just as bad that will never be shut down if we use the JRC as the model of what the worst kinds of institution look like.
And there are places even worse that will never be shut down either.
And the worst places in the world, generally, are the same ones that will get propped up by the shutting down of the places the public has the most visceral unpleasant reactions to.
There’s problems in the disability community, too, and until they’re exposed for what they are, there will be a lot of difficulty changing things.
There’s… a lot of disabled people out there who engage in the completely unproductive practice of competing to talk about who stayed in the worst institutions, who had the worst treatment.
Understand that when I’m talking about the worst institutions above, I’m not talking about the worst institutions in any kind of competitive sense. I’m talking about, the worst in terms of the overall amount and kinds of damage done.
I’m not saying that there aren’t people who had worse experiences in state institutions than private ones, or that there aren’t people who had worse experiences in traditional institutions than in pseudo-utopian farm communities. I’m not trying to negate any one person’s personal experience. I’m just trying to explain… things are not what they seem, what everyone believes to be true is not necessarily the truth.
But I’ve seen disabled people who compete with each other about things like this. They say that they, unlike so-and-so, had experience with REAL institutions. Or they, unlike so-and-so, had REAL bad experiences. Or they, unlike so-and-so, were REALLY traumatized by what happened to them. That because they stayed for months rather than days, or years rather than months, their experiences were automatically worse and more deserving of recognition. And there’s… absolutely nothing productive that happens there. That’s ego-driven bullshit. It’s not activism, it’s not helping anyone at all. It’s a competition in self-pity.
So understand, again… when I’m comparing things, I’m doing so not with the aim of undermining any given person’s experiences in their own life. I’m doing so with the aim of showing people things they don’t want to see. I’m saying that what most people says is best, in terms of institutions, is often the worst of all. That often, the most damage is done where it can be seen the least. People have to understand this if they’re going to have any hope of actually reducing damage.
So close the JRC, close it over and over and over again until it’s really damn closed.
But… don’t focus on it to the exclusion of places just as bad or worse that don’t necessarily look as bad on paper.
Understand that your visceral reaction to the idea of skin shocks doesn’t make it the worst possible punishment that can be devised. It’s a pretty diabolical physical punishment. But sometimes – no, more like often or usually – people are damaged worse by things that don’t touch them physically at all.
Your instincts here are not necessarily a good guide to what is truly awful.
And I worry so so much about what will happen to people after it closes.
And I worry so so much about people enduring unspeakable damage, sometimes far worse than skin shock would hurt the same people, in institutions considered progressive and even utopian.
(Trust me, behind just about every utopian institution lies a dystopia beyond imagining. And I worry about the “He loved Big Brother” effect obscuring people’s views of what actually goes on in those places.)
My worst nightmare. And when I say my worst nightmare, I mean, these are actually real actual dreams I have that are worse than any other nightmares I’ve ever had. They vary in content, but they go something like this:
I’m living in a place with lots of other people with disabilities. There are staff there. The staff try to give us every freedom they possibly can, at least as visible from the outside. In one of these nightmares, I’m climbing a tree, outdoors, and totally allowed to do so. But there is someone following along behind me to make sure I don’t get hurt. I feel like a child.
I feel like I’m suffocating. I feel like I’m suffocating in cotton candy. But I can’t point to anything particular that’s wrong. There’s this fog that lurks over the entire place. It’s white, maybe slightly yellow or pinkish white, but mostly white. And it obscures the ability to see anything. And it smells like sweetness. And it feels like death, in the worst possible sense. But you can’t tell where it’s coming from. It’s everywhere and nowhere at once. You can’t see it except in your head, and only out of the corner of your mind’s eye.
Staff are nice to us, in the same way that people are nice to young children. They giggle at us as if we’re cute. They hug us a lot.
They also make us do what they want us to do. It’s not possible to know how they do it. They don’t use physical torture or restraints. They don’t even always use drugging or anything like that. We just… somehow always end up moving in the direction that they want us to move in, so to speak.
When I wake up, I feel an intense longing for the place I just woke up from, just for a minute or two. And then I realize what’s going on, and I want to vomit over and over and over again until the experience is gone from my head forever.
This isn’t the best description, because the problems of these places can’t be described. I once spent six days in a place very much like that, though, and the sickly-sweet-death-fog clung to me for years before I could get it to dissipate.
Nobody will ever get the kind of backing to close a place like that, that they will to close a place like the JRC. Even though a place like that could potentially do more damage than the JRC, after a person is moved from the JRC to a place like that. And if we close the JRC, it’s quite possible idealistic people will be building places like that to take its place.
I can’t explain why it’s as bad as, ,or potentially even worse than the JRC or a place like it.
I can’t.
But it is.
Please trust me on that.
Please understand what I’m trying to say here, because it’s incredibly important, and not enough people are saying it. (And no, it’s not “don’t close the JRC” or “the JRC is good”. Somehow, people are really fond of reducing important, complex things I say to simplistic bullshit like that.)
I’m trying to say this, for the sake of all the people who won’t be helped if we focus only on closing the JRC.
Now I’m going to try to get some sleep again. I hope I don’t have nightmares.
ETA: Before anyone tells me, as they always tell me when I say this, that the Judge Rotenberg Center will call attention to the issue and everything will follow from there and the public will be interested in closing all the other institutions then, later, once we get to the JRC first, that’s not at all how I’ve ever seen it work, not with Willowbrook, not with anything. (And a friend of mine worked in a “good institution” that killed a former Willowbrook client, mind you. She got fired for trying to stop them from killing her. So she survived Willowbrook only to get killed by staff in a 'supported apartment’ group home setting. So… that’s a very specific example for a very specific reason.) The public doesn’t want to close all institutions when they hear of things like this. They want to make good institutions and then forget about the matter. And the good institutions can be worse than the old ones in many ways.
3:12am
July 16, 2013
I get so angry at people’s surprise sometimes.
Maybe it’s not rational. Maybe it’s not right, either. I don’t know.
I remember at 9/11 all these people freaking out about how their illusions America is safe were shattered.
And I kept wondering how they ever thought it was safe.
People are locked up and abused and neglected for absolutely nothing more than being disabled. All over. Everywhere. In your backyard.
And we are all invisible to you. Because it’s normal for disabled people to disappear off the face of the earth, never to be seen again. Whether we are locked up in institutions or in back bedrooms, or simply housebound, you never see us, except sometimes in mysterious wheelchair vans or short buses. If all the institutions disappeared off the face of the earth you’d never know we were gone.
And if the abuse or neglect kills us, you always assume that it’s because being disabled means you die young.
And if the abuse and neglect and imprisonment and alienation causes us to lose hope and decide we want to die, then instead of changing the conditions that make us suicidal and hopeless, you vote for laws to make it easier for us to die — by our own hand or someone else’s, doesn’t matter. Because you imagine it’s our disabilities that make us suicidal. In most cases, you’d be wrong. But your own fear of disability convinces you you’re right.
When bad things continue to happen to us in institutions, you don’t try to get us freedom, you try to build us better institutions. And you always fail. But you imagine freedom means dying on the streets, because you can’t imagine what real freedom would look like for us, because you take the services that help you survive for granted and think the services that help us survive are special and can only take place in special places for special people. (gag)
And you also don’t know how many of us disappear to prison. Many of us who aren’t properly diagnosed and get assumed to be criminals. Many of us who are people of color which means assumed criminal rather than disabled. Many of us with mental disabilities. Disabled people die in prison even faster than we die in nursing homes, because often we don’t even have a right to medical care there.
(And never forget the high death rate of nursing homes themselves is because they are institutions and institutions almost always provide substandard care. Not because disabled people are all going to die that young.)
It’s legal to torture us in many places. Repeat: It’s legal to torture us in many places. Places it’s not legal to torture anyone else in that manner. And who keeps those laws alive? OUR OWN CAREGIVERS AND FAMILIES. So if you think caregivers are saints for putting up with the hell that is being near us, remember that we are often the ones putting up with the hell that is being near them. (No, not even close to always. But more than you would ever imagine. Often ESPECIALLY the ones who get the most recognition from nondisabled people for being saints.)
In institutions where torture is not officially legal, it frequently happens anyway. So don’t assume you can just close the Judge Rotenburg Center and all will be well. Torture in the name of treatment is happening everywhere. Including your own backyard.
Also not all institutions are large buildings. Some look just like ordinary houses. Some only have one inmate. Or have inmates who are spread out over a large geographic area. But they are still institutions because the power structures and the way they function is just the same. Remember that when anyone tells you all the institutions are closed now. Sometimes the good looking ones are actually the worst to live in.
And lots of us die for other reasons. Because we can’t afford medical care. Because Social Security would rather turn down a thousand legitimately disabled people than give a tiny bit of money to one faker. Because we can’t afford services. Because we can’t afford respirators. Because disability often means poverty and everything that comes with it. Because of domestic violence and caregiver abuse. Because of homelessness, which is way more common among disabled people.
Almost all of these things are legal.
Almost all of these things are encouraged by our society.
So don’t tell me we were safe until 9/11 or until Guantanamo was built. That safety is an illusion. Disability is one of the only minority groups that anyone can join. Eating healthy and exercising will not protect you. Most people will become disabled before they die. So none of us have ever been safe.
But until you become disabled, you rarely question any of this system.
You think it’s natural for us to disappear. Or you think it’s unfortunate but cost effective. (Tell me, nondisabled people - when’s the last time you let anyone put a dollar value on your life?)
You think it’s natural for us to die long before we would naturally die. (You don’t even imagine that our natural lifespan is longer than our nursing home lifespan.)
Hell, you might even think it’s “unnatural" to “keep us alive", and see us as Frankenstein’s monster, kept alive by “modern medicine". You may shudder at “all those tubes" that bring us air, water, food, and medication, and help us defecate and urinate. You may hope desperately that you never “end up like that" - until you do end up like us, and realize you’re the same person you were before, and desperately want to live.
You think suicidal thoughts are a natural consequence of being disabled. Rather than, as they usually are, a consequence of the way disabled people’s lives are constrained in a million ways by our society.
But then you see the way our lives are constrained as natural outgrowth of the way our bodies work. Rather than a really disturbing cultural phenomenon called ableism or disablism. That does not have to happen at all.
Oh and also when our families murder us, you always seem to assume it’s what we would have wanted, or that it’s because they snapped under the strain of taking care of us. (Even when they actually refused to help us get services, or else weren’t even our caregivers at all.) You never seem to notice that we feel the same way about being murdered that you would feel. So they rarely get convicted of murder. Or of anything. Or their sentences get reduced to practically nothing. But that’s okay because they were already sentenced to (insert out lifespan here) of living with us as family members, that’s punishment enough. Sometimes they only get sentenced to murder once they start offing nondisabled people.
So disabled people have never been safe.
And nobody is safe from becoming disabled.
So nobody is safe. And never had been. Your safety is an illusion and the disabled people who call you “temporarily able bodied" know that all too well.
So instead of, every time there is a crisis, lamenting that “omg I never realized how unsafe we were"…
…why not actually do something to make it safe for all of us???
And if you think nobody hates disabled people, look at everything I said and try to tell me that’s not hate. Hate can come in the guises of pity and compassion, all hate means is people are doing things to destroy you, it’s not an emotion.
There’s millions of things to work on. If progress had not already been made, I’d be in a nursing home or ICF/MR. And probably long since dead. Rather than typing this from the bed I live in, in the apartment where I get services.
So it’s nothing like a hopeless battle. Unless nobody fights it. So fight it. Ableism isn’t about not saying “lame", it’s about a huge nationwide and nearly worldwide system that imprisons, abuses, neglects, tortures, and kills tons of people, every minute of every day, in your backyard. So if you can (and not everyone can), try to do something about THAT. Before it’s you.
8:57pm
February 20, 2012
➸ Why Students Praise the Judge Rotenberg Center
An old blog post of mine where I describe a video the JRC uses to manipulate parents into disregarding their children’s complaints about the institution. It also teaches parents how to manipulate their children into only saying good things about the JRC.