6:30am July 14, 2013

I think I may have written the following paragraph ten years ago?

“I have a recurring nightmare. I am in a beautiful building with a hushed, playful atmosphere. I have been there as long as I can remember. Everything I could possibly need is there. There are no locks on the doors. People follow me everywhere, but just out of sight, to give me the illusion of freedom. They want only the best for me. I can go outside and play in the woods, and I climb trees. And they treat me like a child. Everything is controlled perfectly. Nothing seems to be wrong, but nothing seems to be really RIGHT, either. Everyone is very sweet and very kind and very nice and very forgiving, but there is no freedom. Anywhere. This makes the apparent happiness of the place empty, shallow, and false. That, to me, is the essence of the intangible horrors I fear. Only when I wake up from this nightmare do I realize it’s a nightmare, and that in turn makes it all the more frightening.”

Now put that beside the “dementia village"and what do you get?

And yes seriously I’ve had that nightmare for ages, and it’s probably one of the worst nightmares I’ve ever had. I believe that I have had that nightmare because I’ve experienced a wide variety of institutional settings, both as a patient and a visitor. And the most terrifying ones are the ones that resemble normal homes, that slide into that almost-right but horribly wrong territory, that is somehow so much worse than being locked up and tied down and tortured.

People who have not been in these situations rarely understand. People who have been in these situations but haven’t had the chance to assess the damage, also often don’t understand. It’s so EASY to say that you can measure how bad an institution is by counting the bars in the windows, the maggots, the starvation, the brutality.

But places like that are honest. You know what’s going on. And you know what they are. Which means you have your guard up. You can defend yourself.

I get horrified whenever people start trying to build more humane institutions. Because you can’t build a humane institution. It’s not possible. You can only build an institution where the ugliness is covered over. Where the inmates won’t have their guard up unless they know exactly what to look for.

I know a lot of people who’ve been transferred back and forth from state institutions to private institutions or group homes. Know what most of them say is the worst? Private institutions or group homes.

I’ve been to a variety of private mental institutions, a psych ward in a general hospital, a locked special ed school,  and a residential treatment facility, as well as a lot of settings people wouldn’t even recognize as institutional if they didn’t understand institutions come from power structures, not the shape of the frigging building.

The worst was the residential treatment facility. It had no locks on the doors, just a bell that rang if you left. Although it was in a rural area a so if you ran away they’d just drive around and find you long before you could get anywhere – then berate you for attention seeking behavior, because you couldn’t possibly want out of there?

It had a duck pond, and horses, and goats, and cats, and dogs. It looked like a house. There were no restraints. You had access to the kitchen. The only thing locked was the med cupboard.

Sounds ideal, right?

No. I’d rather have gone back to the place where they tried to kill me.

Because this place used medication and behavior mod, and other restraints on your mind, to control you. Better by far to get tied down and beaten. (Well they beat me at this place too. But that was the best of the abuse.)

After that I went into what I later called community institutionalization. I lived at home. But aside from that, I was driven to a special ed school and day programs and other disabled-people-only activities. In a mental institution you generally walk between the different parts of the place. In a "community institution” you’re driven. But the power structures are little different.

End result? I can’t tell you when I got out. I was eased out so gradually, that it’s like telling the difference between blue and indigo.

Which means that for many years, I still believed I was locked up even when I wasn’t. Which is EXACTLY WHAT THEY WANTED. The whole point of my rehabilitation into society was that I carried the institution around in my head to control my behavior and make sure I didn’t do anything too awful by their standards. To keep me always afraid.

Or, in the words of a psychologist who treated me at the residential facility, his goal was to climb into my head and never, ever leave.

Do you understand now why I think the pretty, home-like institutions are generally worse than the ugly, honest ones?

Why I might have JUST A LITTLE trouble with people building a whole town for cognitively disabled people and pretending is a regular town but everywhere is really staffed by caregivers who aren’t honest about being caregivers?

I swear when people try to build humane institutions for disabled people they fuck up worse than anything they could do without even caring for our well being.

Because they think lying to us is okay. They think permanently confusing is about what is reality and what is unreality is okay. And they ESPECIALLY seem to think that inducing reality confusion is best done to those of us most prone to confusion in the first place.

What do they think will happen when the inmates discover what’s going on and want to leave? They’ll lie to them. And they think that’s okay.

I wish they could understand they are doing a kind of violence that people trying to dream up torture methods on purpose could only dream of.

And they will never understand. And neither will most people.

And btw I also hate all the pseudo utopian farm communities they make for DD people.

When we’ll they ever realize that disabled people of all kinds do best living the same way everyone else in our cultures live? And that it’s perfectly possible to do so? Without making a fake version abd lying to us about it. The real thing is possible. And if they put half the money and time and effort into making that possible, as they do pretending that we can only live in special places just for people like us, then everyone would be much happier and healthier?

(And yes, disabled people sometimes choose to live together. Nondisabled people sometimes choose to live together too. Neither one is the same as an institution. Some disabled people think only institutions will work if they want to live with other disabled people, but that’s because everyone uses that as the model for how all disabled people should live. Nobody would choose to make institutions if alternatives were available, because there’s nothing that can be done in one that can’t be done better outside one. And, for instance, the population of DD people inside and outside every kind of institution including group homes, are totally identical. There’s no difference. The only reason people think there is, is that’s the illusion institutions have to create in order to stay in business.)

Anyway. Seriously. The dementia town is exactly my nightmare. Exactly. There’s no difference.

What I hate is the way the nightmare sucks me in. It’s like falling into whiteness. And sweetness. Saccharine sweetness. And it makes me confused. And it makes me sometimes, in the dream, think I’m happy, but when I wake up, it’s obits it’s anything but. I think it’s the remnants of institutions trying to call me back to them, but always failing in the light of day.

:shudder:

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