I haven’t gotten very far in Exploring Experiences of Advocacy by People with Learning Disabilities: Testimonies of Resistance, (edited by Duncan Mitchell, Rannveig Traustadóttir, Rohhs Chapman, Louise Townson, Nigel Ingham, and Sue Ledger) but I’ve happened upon a very familiar institutional mode of communication and resistance: Singing.

And this is yet another form of self-advocacy that is not as recognized as formal self-advocacy. I’m sure it’s been going on since anyone’s been locked up anywhere. Too often self-advocacy is equated with formal groups, I’ve seen self-advocacy since I’ve seen people struggling for autonomy and a sense of humanity. It’s just… not always as pretty and tidy, I suppose is one way of describing the difference. But there’s nothing at all pretty and tidy about the situations a lot of us find ourselves in.

They have some great institution songs in there. Some generally passed around, some very much based on other songs, some composed in isolation rooms (so we weren’t the only ones who did that…), etc.

This one is to the tune of ‘Clementine’ or ‘Build a Bonfire’:

Come to Barlow
Come to Barlow
We will find it very nice
If it wasn’t for the nurses
We would live in paradise

Build a bonfire
Build a bonfire
Put the nurses at the top
Put the charge hands in the middle
And we’ll burn the bloomin’ lot

The following was written by Doris Thorne while confined to an isolation room for ‘violence’ (she was institutionalized for thirty years):

At one o’clock in the morning
I was dancing on the floor
Singing ‘Mummy, Daddy, take me home
From this convalescent home!
I’ve been here for a year or two
Now I want to be with you’
Goodbye all the nurses!
Goodbye all the nurses!
Goodbye all the nurses!
And jolly good riddance to you!

It’s really hard to describe how doing things like that are vital in places like that. The penalties for singing things like that can be pretty severe. But people found ways to do it, out loud or in our heads, because that’s what people did, that’s one way people resisted captivity.

So I’m very happy to see that someone is collecting these songs, but sad to see that one person who knew most of the songs for one institution has died. These are songs that need to be collected. I’ve heard a lot of variants on them myself. They’re important.

And I remember Birger Sellin’s words “…A song for mute autistics to sing in institutions and madhouses. Nails in forked branches are the instruments. I am singing the song from deep down in hell I am calling. Out to all the silent people of the world. Make this song your song. Thaw out the icy walls. Make sure you aren’t thrown out. We will be a new generation of mute people. A whole crowd of us singing new songs. Songs such as speaking people have never heard. […] And people won’t be able to shut their ears to our singing…” (from I don’t want to be inside me anymore)

One of the institution songs I wrote (I think the tune is a pop tune or something, but I don’t remember what song it comes from), directed, of course, at staff, who did not like our singing (no matter what we sang). There are a lot of possible verses (I end up with a few different ones every time it composes itself), but these are the ones I remember:

You cannot hear this song
You think you know
But you are wrong
This song is under every song we sing

It bugs you and you don’t know why
It nags and nags
And so you try
To shut us up, but you can’t do a thing

We sing about your worst of fears
You shut one down
The next appears
You run and run but you can never hide

One day, we’ll destroy this place
And it will go
Without a trace
Demolished by the knowledge here inside

You cannot hear this song
You think you know
But you are wrong
This song is under every song we sing

It bugs you and you don’t know why
It nags and nags
And so you try
To shut us up, but you can’t do a thing

And people won’t be able to shut their ears to our singing.

“I can understand how you feel,” said the staff person as she was busy strapping me to a bed, and I was busy struggling. “During our trainings, we had to get strapped down for five minutes. It was really scary.” I think this was intended to calm me down. Needless to say it didn’t.

Disability simulations have long been viewed by the disability community as inaccurate and damaging, promoting horrible views of disability that don’t match actually being disabled.  I would argue that a reverse effect is true with disability-torture simulations:  People get an idea that it’s much better than it really is.  The only way someone could understand how that would feel, would be this:

Without any warning, to have someone break into their home and find them (or find them taking a walk, or pull over their car, or get them at work, etc), grab them, subdue any struggling, and strap them to a board, where they are then put into a van. The van drives to a place with many, many locks on the doors. They are “admitted” and not given a chance to speak for themselves, and when they do speak, whatever they say is treated as nonsense or meaningless. They are told what to do at all hours of the day, their every movement, even potentially eye movement, is pathologized, and they are made to witness other bewildered people like them being tortured, especially if the other people fight back or stop responding to their environment the way their captors want them to. Punish all possible responses to the environment, and punish responses to punishment.

Either at random during the course of the day, or as soon as they do something that appears “non-compliant,” have ten people jump on top of them, pin them to the ground, and then carry them into a little room with straps all over the bed, and then strap them down. Tell them they will not get out of the little room until they finish struggling and crying out. Tell them they may never get out of the place at all until they show signs of believing that who they are is sick and that in order to get well they must become or at least strongly emulate something they will never be, and above all stop reacting to confinement as confinement. If they begin fighting for breath, tell them that if they can struggle that much, they can breathe just fine. Tell them they’ll be out in certain periods of time, and then extend those periods arbitrarily. Tell them “You’ll be out in ten minutes,” and then wait four hours. If they ask why it’s taken four hours, tell them “Oh, you’re not quiet, that’ll be another ten minutes.” Repeat for days. Contradict everything they see as reality, get them convinced that nothing they perceive is real is actually real. Shame them for their ordinary acts of defiance in these circumstances, tell them that it must just be for attention because obviously resisting is pointless.

That is a simulation that would truly mimic the effects of institutionalization, and give the entire context in which restraint is experienced. Simply strapping someone to a bed in a controlled exercise entirely among staff is not the same and will never be the same. Of course, the simulation I describe above would be considered unethical. Which makes me really wonder why it becomes “ethical” when it’s done to people who aren’t staff.

On Kevin Leitch’s blog, a staff person at the Judge Rotenberg Center is talking about how they’ve tried the skin shock device on themselves. This apparently is a point in favor of the ethics of using it.

However, that’s not a real simulation either. Here’s the real simulation:

Go through the entire above scenario, preferably several times. If the person survives, transfer them to a new location. In that location, have someone strap a device to their bodies, above any protests of theirs if necessary. Any time they do some particular action, zap them with said device. If they don’t get it, zap them harder. Periodically, tie them down and tell them they’ll be zapped several times within the next hour, but they won’t know when. Let them know that they’ll be there, and be getting zapped, at least until they stop whatever the undesired behaviors are. Be sure to be fairly arbitrary, at times, about which behaviors are prohibited and zap-worthy. Do not permit them to take the device off. For extra bonus points, talk to them in a foreign language that they have no knowledge of any languages even related to it.

Until someone goes through that simulation, especially without even being told that it’s only a simulation, I’m not going to trust a word they say about knowing what it’s like to receive strong aversives. It’s like saying that you understand the sleep deprivation involved in formal torture situations because you’ve been sleep-deprived while studying for tests. Just… no. Not even close.

I’ve now seen X-Men 3. Most of my thoughts on it are summed up in either the post or the comments at the Ragged Edge’s review of the movie (although I’m sure plurals who read this will note that they’re represented in the Ragged Edge comments only by someone who thinks of them as having a “dissociative disorder”). Another thought, which has long bothered me about the X-Men despite liking them, is as follows. (Most of what I’m about to say is common to all X-Men stuff, so there won’t really be spoilers.)

It reinforces a particular way of thinking about people and their political beliefs, that is common but destructive. It lumps several beliefs and actions together, into basically two groups.

Group one (represented by the Brotherhood of Mutants):

• Bad/evil.
• More extreme views relative to the society they are living in.
• Separatist
• Hatred.
• Sense of superiority over non-mutants.
• Willingness to kill or betray without remorse, particularly non-mutants.
• In fact, willingness to kill all non-mutants. Only lives truly concerned with saving are mutant lives, and particularly mutants who are on their side.
• The strongly held belief that mutants are perfectly fine as they are and need no cure.

Group two (represented by the X-Men):

• Good.
• More moderate views relative to the society they are living in.
• Assimiliationist
• Love.
• Sense of equality with non-mutants.
• Primarily trying to save lives, killing only as a last resort and with reluctance, and a general sense of fairness.
• Saving the lives of mutants and non-mutants alike.
• More variety in response to the question of cure.

As one reviewer put it, you’re clearly supposed to side with the “good guys,” but it’s the bad guys making all the best arguments against cure and successfully pointing out the real ways in which it will be used. The issue of siding with the “good guys” is forced by the actions of the “bad guys,” which very few people would condone.

But those two groupings of ideas up above, are not the only way ideas can be grouped. Unfortunately, I’ve actually seen people arguing what views to hold and not to hold, based on whether they sound more like views held by the Brotherhood of Mutants, or more like views held by the X-Men. People are influenced by this stuff. It provides two convenient stereotypes of styles of activism, for one.

For the record, with regards to autism, I don’t believe in a cure, I don’t believe that cure will be voluntary, I don’t believe that even what looks like “voluntarily” choosing a cure is as voluntary as its proponents would have us believe, I believe that prevention would be merely a form of eugenics, I don’t believe that some autistic people are so defective that cure is the only option (I don’t even think of people in general as defective), and my views on many things disability-related are characterized by the society I live in as extreme. At the same time, I am neither hateful nor perpetually angry, I am not a separatist, I have no sense of superiority over anyone, I don’t want to see anyone dead, and I have a strong sense of equality for all kinds of people, autistic and non-autistic.

But take the first several viewpoints, and it’s easy to view me as at least either angry, hateful, or having a certain sense of superiority, based on certain stereotypes of what it means to hold the views I hold. And those are often charges I have to answer to, by people whose vision of the world seems to bear a strong resemblance to the cartoonified simplifications that make their way into the X-Men.

I should note, also, that while I am not a separatist, separatism does not necessarily mean any of those negative things either. It can mean just entirely or primarily wanting contact with a particular kind of people, for all sorts of reasons. There are many autistic people who mainly or entirely have contact with other autistic people, where they can manage it, and there are others who want to build communities of entirely autistic people. This doesn’t seem like a problem to me, even though I wouldn’t want to live there. I don’t automatically view them as hateful or supremacist, because most of them aren’t. Some people do view them that way, though, and that is not accurate.

Moreover, there are plenty of people who think that if they hold one of those views, then they themselves must do the other things described on there. There are people who start out with a view that we are absolutely okay as we are, and work themselves up into a state of artificial hatred or superiority that they would not have worked themselves up into to begin with had they not believed that these things were all necessarily connected. There are plenty of people with more moderate viewpoints who characterize the degree of moderation or “neutrality” in their viewpoints as the only way to promote equality or love, and there are people who are drawn to embracing more “moderate” or “neutral” viewpoints in the fear that they will not be promoting equality or love unless they do so.

In America, the extreme version of views of women’s rights a hundred years ago would be considered unbearably sexist now, even by most people who are not feminists. And many of today’s views held by many people who have plenty of sexist viewpoints, would have been considered unbearably radical back then.

Whether a viewpoint is considered extreme or not depends entirely on the society it takes place in. In a society that totally devalues a group of people, saying that this group of people is valuable as they are and does not need to be prevented or changed into a different kind of people, looks like an extreme view. But in a society that more or less accepts that group of people, it’s not an extreme view at all.

Therefore, it has always seemed to me that a view should be taken on based on whether it seems to be the right view, rather than on whether or not it is extreme in the society that it’s a part of. Taking an “extreme” or a “moderate” view for its own sake, is putting yourself totally at the whim of the society you live in, and reinforcing its own structure of how views are seen.

I talked about the movie to a neighbor of mine, and she said something like “It sounds like the good guys in the movie were what people think of as the good guys in real life. But in real life there’s a third group of people, and that’s us, even though people really don’t hear about us.”

So, while I enjoy watching the X-Men, I really hope that it doesn’t reinforce too many of people’s rather polarized views of what certain beliefs mean about a person’s other beliefs. There are third, and fourth, and fifth, etc, categories, we’re not all X-Men or the Brotherhood of Mutants out here in the real world.