If I don’t look directly at people, and don’t listen to what words they are saying, I can tell a lot about their body language and tone of voice. So one thing I did when watching an interesting set of videos from the Judge Rotenberg Center, was look slightly away from the video and not bother to turn on language comprehension. The following is what I saw.
There were two people near each other, a woman on the left and a man on the right. When one was talking, the other was backing them up through movement. Their movements were coordinated with each other and sort of bouncing off and reflecting each other all the time.
The movements of the woman were quite often something I don’t know all the words for but know when I see it. There were some incongruous movements in there that were presumably to mask something or other. The rest of the movements and noises she was making were quite often to convey a sense of “I’m superior to these students, they are doing all these, sort of silly kid things, and I am laughing in exasperated tired adultness as they go through all these different things.” This is a knowing sort of movement, designed to convey a connection to the person watching it, sort of like, “We all know what this is like,” inviting the viewer to join in the knowingness.
The man moved in more subtle ways, but they conveyed precision and confidence, very much the way many psychiatrists or scientists move. He moved in such a way as to say, “We know what we’re doing, we do not even need to be forceful in arguing anything, because we know exactly what we’re doing.” His voice reminded me strongly of something a friend calls the “male human services accent,” and also conveyed a great deal of precision in the way that he pronounced words. Sometimes it acquired condescending tones, or his equivalent of the woman’s “knowing” tones.
The overall effect is, “We know what we’re doing, even you ought to know what we’re talking about a good deal of the time, and we agree with each other totally on this stuff, seen it all before. We’re not only in control, but it is only natural that we are in control.”
What video am I talking about? It’s called Why Students Complain To Families. It sets forth a set of expectations in parents for the meaning of their children’s complaints about the Judge Rotenberg Center, and asks parents to collude in the dismissal of complaints and the shaping of their children’s behavior to include fewer complaints about the JRC and more compliments. The two professionals in the video are Dr. Timothy Paisey and Dr. Patricia Rivera.
The video is broken up into sections: Introduction, Program Structure, Complaints chapter 1: the Structure, Complaints chapter 2: the Treatment, Complaints chapter 3: the Education, Complaints chapter 4: the Staff, Complaints chapter 5: the Program, Complaints chapter 6: My Things, Complaints chapter 7: Professional Staff, Complaints chapter 8: the Food, and Complaints chapter 9: Safety. Each section details precisely why parents are not supposed to worry about the complaints, and then describes ways parents can react to the complaints.
Some quotes throughout the video on this topic:
From the introduction:
Young people often make complaints about the structure of their school no matter what environment they’re in. The more structure and consistency that the school provides, the more the students tend to complain. (Dr. Rivera)
They argue that children, possibly emotionally disturbed children in particular, are natural complainers, and would complain no matter where they were. This is meant to bring up images of children at school complaining about the cafeteria food, or complaining about reasonable rules and limits set on their behavior. It’s meant to evoke memories in parents of their children doing these things, and to tie those memories to anything the children might say about the Judge Rotenberg Center.
From Program Structure:
And as many parents can attest, most students do not like rules. (Dr. Rivera)
Of course as a parent you may have experienced that yourself, in terms of trying to impose rules or structure. (Dr. Paisey)
These make the parents identify with the professionals at the JRC.
From Chapter 1:
In some ways, if the student is complaining about the structure, and complaining about the intensity of the program, they are complaining about the very things that are effective treatment for them. (Dr. Paisey)
Exactly. Or else they wouldn’t be here. (Dr. Rivera)
Absolutely. (Dr. Paisey)
This makes it sound as if any complaints are because of the student’s lack of understanding of what is good for them.
From Chapter 5:
Some other concerns that we come across quite frequently involve general complaints about the program. Students will complain that they are physically held or restrained for no reason, and they will claim that they didn’t do anything to justify or provoke this. They will claim quite often that their behavior contracts were broken, also for no reason, or for no good reason. (Dr. Paisey)
And usually the problem is that the students don’t connect their own behavior with the consequences or structure of the program that has been put in place for them. (Dr. Paisey)
And that’s where you hear the complaint of “Staff are too strict” or “I was restrained for no reason,” because they’re not initially making that connection. (Dr. Rivera)
Of course, being restrained and otherwise punished for no reason, and then having it written up otherwise, is an incredibly common experience in institutions. It is convenient for them to have such a facile explanation for the whole thing.
From Chapter 8
Now young people complain about food all the time, in fact young people complain all the time in my experience, about everything. (Dr. Paisey)
This is true. (Dr. Rivera)
So if they weren’t at JRC, they’d probably be complaining about different things in different places… (Dr. Paisey)
Actually, the JRC imposes a strict diet on the “students”, regardless of their prior dietary preferences, and while it allows “other food” sometimes (sometimes contingent on good behavior), this is still an unreasonable restriction.
Chapter 9:
Nonetheless we will have students who do report to families that they are going crazy, or that they are going to hurt themselves, or they’re gonna run away, or they will make claims that staff abuse them, or they will say that they have marks on their bodies as a result of a restraint procedure. And they will sometimes claim that they were hurt by other people on purpose. (Dr. Paisey)
Because things like this happen in every institution I’ve seen.
And here is the big one, the one that explains everything:
If you have a telephone call or a face to face meeting during a visit with your son or daughter and they make some complaint, the first thing to do, I would suggest is to ask yourself, “Is this one of the complaints mentioned on that video I saw?” And then perhaps that will guide you towards the next step, which might be to listen briefly to the complaint. If you can, try to minimize your reaction to it. You can ask for specific details, specific contents, briefly. And then move on. Move on to something more appropriate and positive. If you think you need more information, contact the case manager. (Dr. Paisey)
See, the first thing to do is see if the complaint is mentioned on this video. If it is, then obviously it’s not a valid complaint, or something.
But in the course of the conversation with your son or daughter, try to move on. The reason is because the attention we give to what our children say is itself a reward, it reinforces that kind of behavior. If we’d like to hear more complaining, then all we have to do is pay attention to complaining. If we’d like to hear more good news and positive reports, then what we could do, is to pay a limited amount of attention to complaining, and then move on, and ask “What has happened that is appropriate and positive?” And in fact, if you start by attending to the complaint, and then move on to the more positive information, over time, perhaps the attention to the complaint that’s less, and the attention to the positive information that’s more, and you can teach your son or daughter to pay more appropriate attention and emphasis to reporting positive news. (Dr. Paisey)
That is a description of using behavior modification to get students to say good things about the Judge Rotenberg Center. In other words, a form of brainwashing.
So what we’d like to do is to actually ask your help, in assisting us to teach these students how to do this. (Dr. Rivera)
And that makes parents feel as if they are doing something helpful for brainwashing their children.
We would encourage limited attention to complaints. We would encourage you to make a note of complaints. If you detect a pattern in the complaints, share that information with the student’s case manager, because then, if we need to, we could even adjust his or her program to take account of this. Those are some active ways in which families can become more involved in treatment and some active ways in which the student will not be able to manipulate others to cause the treatment that they truly need to stop. (Dr. Paisey)
Here, it talks about how they can adjust the student’s “program” to deal with the complaints. Presumably not to stop the bad things going on, but to stop the complaints, of course.
So, as you can see, one reason that students praise the Judge Rotenberg Center is that they have been, literally, systematically trained to say positive and not negative things about the place. (I have experienced similar training, it’s nothing to take lightly.)
Thank you for writing this. This has made me think a lot about the two months I spent in a psych program — gods, has it been almost three years? For all that I don’t always like to think about it, and in fact often have nightmares about being back there when I put too much thought into it, there are things about my experience that I just realised, and some that I just was able to conceptualise or put into words, now, as I read this. This tells me that more thought is required, and that maybe the reason the nightmares come back is that I’m not done processing what happened and haven’t figured it all out (ha).
I’ve been reading your blog backwards, having just found it today, and it’s astounding to me. So many things you write make the aha! light go on in my head. And (this one may sound like a really small thing) when I joined the ALF Second Life group, the fact that is was the first autistic group to mention my diagnosis in the description moved me greatly.
I guess I’m saying, in a rather overemotional way, that I really appreciate what you’ve written, and want to thank you. I will be reading.
I know you posted this ages ago, but I thought I might comment anyway…
I think I know a little about what it’s like to be in an institution. I spent my childhood being pinned to the floor by various abusive stepfathers… then I went to a “college” that was really a cult (think complete control–never alone, anywhere; cameras everywhere; everyone reporting on everyone else; You Must Think This Way…). Aspies are unfortunately quite gullible when it comes to cults… And then there’s the time I spent in the mental ward, a total of two weeks but enough to wake up all the memories of abuse and control and have them rushing back again.
I agree with you wholeheartedly: It really is the control–the way they get in your head–that hurts you so much more than anything physical. The body heals in a straightforward way; sometimes it leaves scars, but eventually it’s healed and that’s it. But the mind… Once you let them control your mind, that’s it. You start to lose who you are, lose your identity. Once you start to believe what they say, you lose the only scraps of freedom you have in such situations. It’s imperative to keep your mind your own–just a little part of your mind, if you can’t manage all of it; just a token, symbolic resistance to tell yourself, Yes, I’m still me; I’m not their puppet yet.
Such an environment would be hurtful to a psychologically healthy person. But by the time you are in a mental ward, or an institution, you are usually suffering from PTSD, depression, anxiety, et cetera… not to mention physical problems and the results of overmedication… It’s surprising that anybody gets out of those places with any bit of sanity left.
By the way: PTSD sucks. But with time, it begins to fade… One day, you look at the world and realize you’ve finally made peace with those experiences, made them a part of your past; and that you’ll never quite be the same, but you can live with that, too.
OMG. I am high functioning autistic with some psych issues as well. Everything you say about the institutions and psych wards is so true. I was in McLean at one point getting ECT (shock therapy) because they didn’t know what else to do with me, but insurance wanted me out and if I didn’t agree I was most likely going to a state ward. So I agreed. That was 3 YEARS ago I’m still dealing with reprocussions from that. Thank god I have a therapist now who will go to the ends of the earth to keep me OUT of psych wards. Because he knows how much worse they make me.
Expressed emotion (EE) is a term used to describe the emotional attitude of relatives or psychiatric care staff to mentally ill patients. High expressed emotion is shown by a high rate of critical comments, hostility, emotional over-involvement (as reflected by extreme emotional reponses by the relative or staff and over protective behaviour towards the patient). Low expressed emotion relatives and staff might be described as being laid back.
Recovering patients living with high EE relatives or psychiatric staff are exposed to constant stress which results in emotional distress. They are especially likely to relapse.
A study in Britain published in 1992 of two hostels for recovering patients, in one of which the staff were high EE, found that the patients were more likely to leave the high EE hostel. A study in Los Angeles, published in 1994, found that patients living in a residential care home with high EE staff had a poorer quality of life and worse symptoms than patients living in a low EE environment.
Amanda, have you ever read the French philosopher Michel Foucault’s “Discipline and Punish”? It is right up your alley, but he unmasks the disciplinary nature of the whole of modern society itself.. Here’s a readable link to a review of the book. http://www.geocities.com/athens/agora/9095/carceral.html
Have you heard of the Rosenhan experiment? Eight people pretended to hear voices but without any other symptoms tried to get admitted to various psychiatric hospitals. All eight succeeded. None were detected as fake during admission, but other psychiatric patients identified them as fakes.
When admitted, they all acted normally, but their actions were interpreted by staff as pathological, e.g. taking notes was labelled “writing behaviour”.
The second half of the experiment was carried out when another hospital heard of the results but said they would not make that mistake. Rosenhan said that he would send some fake patients to them to test this, but actually he didn’t. This time the hospital said that 41 of 193 real patients were impostors and a further 42 were considered suspect.
http://en.wikipedia.org/wiki/Rosenhan_experiment
Larry: Heard of it, but I find Foucault hard to follow.
bargedweller: Yes, I’ve heard of it, and I think I read it at some point.
I’ve also read stuff by one former psych patient (not part of an experiment) who was a writer, and who got pathologized in a similar way.
Re, Rosenhan experiment: The second half of the experiment (where real patients were falsely identified as “imposters”) reminds me of a story that Amanda posted somewhere in this blog site from a woman who had repeated trouble getting help from the system, despite very obvious difficulties in taking care of herself, because doctors etc. kept saying she was simply seeking attention etc. I couldn’t remember enough detail to find it again or else I’d reference it — I think it’s one of the older posts here.
Jen Birch had that experience, because during her stay in the psychiatric ward they diagnosed her with ‘factitious disorder’ and later when she needed help she was refused it based on her diagnosis (which means ‘faking signs of mental illness for material gain’).
Yeah, although that’s not what factitious disorder means, you’re thinking of malingering. Factitious disorder means faking it without doing it for material gain (because you just like the idea of being sick or something). She was badly mistreated in that psych ward, and she’s one of the people who wrote about emotional and mental abuse in those places instead of just the physical violence.
No, it’s “Autobiography of Anonymous” the person is referring to, which is somewhere on autistics.org. The person was having serious trouble functioning, but they were blacklisted for healthcare everywhere because someone diagnosed them as a sociopath, which is a growing problem in the UK apparently (to diagnose people with personality disorders so nobody has to help them). And one of the readers of this blog was a psychologist who had lived in the area this person was from, and they confirmed that all her crappy experiences sounded exactly like what someone from that area would encounter.
Thank you, Amanda. I found the link now (with the info you gave): http://autistics.org/library/anon-bio.html
Sadly, what you describe as your own experience, is not unknown to a lot of “normal” women in their pregnancy and childbirth experience. I think it’s just the way the medical community has to treat people. They cause excrutiating pain and tell you “I know that’s uncomfortable”. They do genital surgery on babies and say “He won’t remember it” and never stop to think that *he* has to live with their actions for the rest of his life…they don’t. They tell you whether you can eat (usually not), whether you can have a chip of ice, stick IVs in you, put you on the clock…if you don’t perform in time, they wheel you into surgery *even if everything is fine*…”just in case”. In most places now, if you’ve ever had a c/s birth, even if you’ve had subsequent VBAC births, you are forbidden to VBAC…”just in case”. Yes. It’s horrible. It’s not limited to your population or any population. And of course….it’s all for our own good. :P
This interview with Clare Allan, the author of the novel ‘Poppy Shakespeare’ set in a north London psychiatric hospital, is well worth reading:
http://www.bloomsbury.com/Authors/microsite.asp?id=1059§ion=1&aid=1487
She said that she could not have written the novel if she had not spent almost a third of her life as a patient in the psychiatric system.
She describes her experiences in a north London psychiatric day hospital: “every few months you had a ‘Case Review’ which you weren’t allowed to attend, except for a few minutes in the middle when they called you in to answer questions in front of an audience of staff and students. This was where I heard my thoughts described for the first time as ‘voices’; where my actions ceased to be my actions and became instead symptoms of something bigger, something diagnosable.”
In the hospital common room “there was a hierarchy, a code of behaviour, alliances and long-running feuds, the origins of which were often forgotten.”
The common room also had its own culture, which “like cultures everywhere put pressure on its members to conform”, and conforming meant acting mad.
This piece offers wonderful insights to the less obvious problems with our society, methods of medicine, schools and treatment of not just the “special needs” population but everyone. Thank you for standing up and speaking out.
My son is PDD/NOS non-verbal… brilliant, an excellent communicator and has always shown great judgment. His mother has secured for him the best in therapy (at a cost ranging into the millions). Yet he would agree with your observations. The saddest part is that although the armies of specialists and “therapists” are well trained and well meaning (yielding benefit of any doubt), the consistently fail to recognize who he is! Yes they know his behaviors and create mountains of regurgitated psycho-babble (that often look more like a cut and paste of another student’s report), but they do not know him or at least do not respect him.
Years ago I tried to work with the school on these kinds of issues. They got defended and then behaved bizarrely. After hours of discussion of negative behaviors (some very disturbing and injurious) they refused to tolerate a question (after the meeting was officially over) about the word happy on the first page of his IEP. Given a dozen pictures of bites, bruises and such, only enraged them. I walked out and now consider that organization (perhaps one of the most respected on is it’s field)… I now consider the school very poorly.
Many years ago, at a conference, I asked a guest speaker (autistic, shy and not an experienced public speaker) a question. If you could send a message back in time to your parents and teacher, what would you say? She struggled with the complexities of the question, but in time announced fervently, “WE KNOW MORE THAN YOU THINK WE KNOW”!
This statement is the corner stone of all of my thinking on the subject. I try to look to see who someone is and not what they may not be. It seems common sense, but then that seems to be a lost art as well….
There was once a ray of “therapeutic” light, a PT that seemed to work miracles. I watched many sessions and did not get why he did so well. At school he would struggle to show any progress, yet there he learned quickly, was immediately compliant, always did well, gladly took risks and was in a word happy. In conversation with the therapist she admitted that he did not have any physical disabilities (evident), but the sessions were paid for and he had a rigorous schedule (40 hours of ABA or it’s ilk every week), so she took the time to let him relax and play.
The idea that play is essential to growth is common sense and advocated for by many experts, notably in T.B.Brazelton
[Hmmm – a word limit – continuation from previous post]
The idea that play is essential to growth is common sense and advocated for by many experts, notably in T.B.Brazelton’s “floor time”. I always felt that playing was a core port of life and have since set it as another cornerstone of all considerations, regardless of the topic. Play needs to be always part of our lives.
What message would you send to your “therapists’, teachers, doctors and parents?
What can be done to address the atrocities you outline?
What do you propose to correct the problems?
How would you change things?
[…] inherent awfulness before, over at Ballastexistenz. Looking again, I must have skimmed over her Outposts In Our Heads post before, because it was just too uncomfortable. (I felt like I was going to have a heart attack […]
The change in name is epitomized by the renaming of the notorious Willowbrook State School in New York, to Staten Island Developmental Center.
The three legitimating myths of institutions for the mentally retarded were tradionally as follows:
First, they were “designated as education and training centers for people who are mildly or moderately retarded. Education and training have been defined less in terms of academic instruction than moral discipline and hard work, including caring for the severely disabled residents of the institution. Second, institutions have found legitimacy in providing custodial care for individuals labelled as severely and profoundly retarded and/or mentally handicapped. […] Finally, institutions for people with mental retardation have been justified as agencies of social control.”
In response to public pressure these instutions changed their goals, structure and vocabulary.
Examples of changes in vocabulary:
“Facility name: State school or state hospital to developmental center, reginal center, education and training center.
Living quarters: Ward to unit, halfway house. house. Custodial ward to living and learning unit. Punishment ward to special treatment unit, behavior shaping unit.
Inmate titles: Patients to residents or clients. High grade, low grade to mildly, moderately, severely profoundly retarded. Moron, idiot, imbecile to developmentally disabled.
Practices: straightjackets, camisoles to restraining devices. Tripping to toileting. Isolation to time out. Activities referred to by descriptive names, e.g, going for walks, coloring to motivation training, recreation therapy.”
However these institutions are still total institutions. “For residents, daily life is routinized and regimented.
Visitors to these institutions seldom visit the back wards.
The offials of the instutions now use the rhetoric of individual rights and personal growth and development. However “the rhetoric of rights may be used to account for a failure to provide residents with programming or encourage them to act in socially appropriate ways.”
Hmm, I cannot (fortunately) imagine what it must be like to be in any institution, let alone what you have described. What came to mind was also the Rosenhan experiment, I remember reading it in a text on the theory of perception of mental illness.
What really stuck in my mind was how even the most ‘normal’ behaviour can be perceived as devious to social norms in settings such as a mental institution.
I find it worrying to be perfectly honest.
[…] kept melting down and getting thrown in psych units*. (If you haven’t already, take a look at this post over at Ballastexistenz. It gave me flashbacks.) E. didn’t understand so well when I started […]
[…] assumptions about how your mind must work, and what must be motivating you–this can really screw you up. All kinds of harmful interpretations can be placed on why you don’t know, or refuse to […]