Another lengthy post, this thread seems to be inspiring lots of them, and I am not capable of controlling the length of my posts, so...:
I'm not going to look at the video because I have institution-related PTSD. But if it's the JRC being talked about, they're really infamous for a reason. They've been doing that stuff for decades, they even moved states after one state shut them down because of these abuses. The guy who runs the place is a totally unapologetic proponent of skin shock, not only for autistic people but for a number of other sorts of people. If they're still running, they're still doing it, it's basically their whole schtick. It has absolutely nothing to do with Autism Speaks, they've been doing this since long before Autism Speaks existed.
One thing that I worry about when people focus on the JRC, though, is... yes, it's a terrible place, where terrible things happen, with the excuse given that if someone is severely disabled enough then certain ethical standards can be thrown out the window (even though they also do the same to people who are considered mildly disabled, so...), etc. However. Things like that (not always skin shock, but other forms of abuse-in-the-name-of-treatment happen less openly in tons of other institutions. I've seen and experienced things like that firsthand myself. And I worry that when the JRC is set up as the most evil of the evil, people won't be working to stop things like this happening all over the world in hundreds if not thousands of other institutions (I'm not good at numbers, but it's lots). [
Oh and also -- I use the sociological definition of institution, so I am not speaking only of the stereotypical large buildings here. An institution can occur in any size and shape of a building that exists -- and a building can look institutional and not be one at all, for instance the building I live in, which most people in town think is a nursing home. So by institution I mean anything with a specific kind of power structure that's hard to describe. And it means anything from traditional huge institutions, nursing homes, small psych hospitals, whatever.]
And often I feel like people also focus on the really obvious "dramatic" things, like making people wear shock backpacks, when those aren't the worst things that happen in institutions, according to a lot of us who've been in them. The worst things are far more often the insidious things that can't be so easily controlled. If the JRC stopped using skin shock and all other forms of aversives, tomorrow, it would not make it a good place. I know someone who was in state mental institutions for awhile, and then was eventually taken out and put in a really expensive private institution with all the supposed comforts and so forth. She found the private institution far worse. Why? In her words, "In the state institution, at least the worst thing that happened to me was rape." And I know a whole lot of other people with similar stories. You can remove the shocks, the beatings, the rapes, and still not have a good place. Sometimes you can remove them and have a worse place (not that this is ever a reason to allow such things to continue). Because when institutions stop doing the really obvious forms of physical abuse, they often have a tendency to switch to doing things that get inside your head and mess around in there in ways that are far more hellish to most people than being beaten up. And when people focus only on the physical abuse (and often, only on the most spectacular physical abuse), they often set up a situation where the less tangible kinds of abuse won't be dealt with.
And even when you don't have people trying to mess with your mind in intense and terrifying ways... there's an environment of degradation that is very hard to remove from an institution. And that degradation is often hands down the worst part of being there. It's like it's in the very air you breathe. It's hard to explain if you haven't both been there, and been in a situation where you were really made to perceive it -- there's people who go in and out so fast they barely notice, or who are treated better by staff and don't realize what it's like for everyone else. And it's just so hard to describe, and so utterly damaging in ways that you don't even necessarily realize at the time.
So, again, I don't mean that people shouldn't focus on the spectacularly bad stuff at all, and I don't think the JRC ought to exist. But a lot of people would stop at getting them to either get rid of the aversives, or at closing them down if that's what it took. And that's not good enough for the other people who either temporarily or permanently have to live in institutions where the main issue is the degradation and the other things that are not easy to quantify or avoid. And I find most people that haven't been in institutions (and even a couple certain specific kinds of people who have been in them), don't get that, don't get where most of the damage is coming from, don't get that damage is even happening in most places. (And especially the expensive or aesthetically pleasing ones.)
[Oh and by the aesthetically pleasing thing, I wanted to mention -- as someone who's been in institutions that try to hide how awful they are, I saw photos of the inside of the JRC, not knowing what place I was looking at, and immediately knew they had something to hide. Most people when they look at what's awful about institutions, they look at things like how many people sleep to a room, what the beds look like, whether there's bars on the windows. But when I look for what's awful in them, one thing that rings my alarm bells is a place that has been over-decorated to the point of absurdity. Because that usually means they have something to hide, and want to look as warm and inviting as possible to people who can't sense the horror in the air. I would rather walk into a place that looks old and scruffy and falling apart and ugly and stereotypical, any day, before I would walk into a place that is too clean, too polished, too decorated. Of course I'd rather go to neither, but if it's one or the other, experience tells me to choose the scruffy ugly place.]
So, yeah -- trying to stop the JRC is a good thing, but not a sufficient thing, and too many people think it's sufficient. Also, when dealing with trying to stop any institutional situation, you have to be advocating for really good services at the same time. If you don't do that, the people living there will end up somewhere that ranges from almost as bad as the institution, to worse. You have to think of these practicalities. You also have to make sure that the services will cater to anyone regardless of severity of their disability. Otherwise you're going to end up with the same situation that often started things -- people being bounced from institution to institution because they're told their problems (self-injury, violence, whatever) are too severe to be dealt with in the community. (Which is BS, you can deal with anything in the community if you have good enough services. But you can't toss my last sentence around lightly. You have to understand in depth what's needed. Including what's needed to keep community services from being simply a form of institution where each inmate lives in a different house/apartment, because that happens too, more than most people understand -- I call it "stealth institution" or "community institutionalization".)
If you want a model for getting people out of institutions, you could do worse than looking at how the better elements of the DD self-advocacy movement have done it. In many states, self-advocates both inside and outside the institutions when possible have worked together to shut down institutions and create community services that are responsive and allow everyone to live the best life they can on the outside. Here's a link to a very short description of one group of people who did just that:
http://www.mouthmag.com/peoplefirst.htm
And here's a place that has been working on these things, in this case it's a combination of professionals, parents, and self-advocates, and self-advocates often come last in bad ways despite being somewhat included, but they still have information:
http://thechp.syr.edu/community_imperative.htm
I was actually at their turning point conference, and while I liked some parts and disliked others, they had a crapload of information on all different levels of this stuff, including the "community institutionalization" problem. You can order a really detailed video from that conference here:
http://thechp.syr.edu/HumanPolicyPress/
Because, basically, while the ethical decision not to have institutions is simple, the implementation can be really complicated, and anyone who is trying to get a place closed, really needs to understand that fact, and that simply closing it without putting anything in place to replace it, is a good way to get people killed despite your good intentions. If I were in an institution, for example, closing it without putting me into a really good set of services, really would likely result in my death pretty rapidly, as my self-care skills are pretty limited. If I were in one, I'd want it closed as much as anyone, but there are ways to do this and ways not to do this. Often if people aren't just thrown onto the streets or something (which some who've been there will say is safer and better than the institutions, which does not mean being on the streets is remotely good, it just says how bad institutions are), they're just thrown into another institution, which solves nothing.
Oh and also, one of the most important quotes from that video of the conference, was a woman who had a lot of experience with these things, saying something on the order of, "The populations of people with DDs inside and outside of California's state institutions are identical." Meaning, there isn't a "type of person who belongs in institutions because it's the only place for them", there are just types of people who mistakenly create institutions as the answer to any and all problems, and try to justify their existence by talking about the most severely disabled people inside them and how they couldn't possibly live anywhere else -- which isn't true, I've seen the same kinds of people living outside them as well. (And the JRC frequently uses that tactic, even though they use their shock devices on people who would be considered mildly disabled by nearly all standards. They just trot out the most "severe" people they can find as an excuse for why they use it. As someone who at one point in my life (when I had very severe self-injury) could have "justifiably" ended up there if I'd been in the care of different sorts of people and possibly also been younger, I am really adamant that you don't "fix" self-injury by shocking people, you just don't.)
So if you're serious about these things and haven't looked into these resources, you really need to look into them or get help from people who have done this before. But be aware that disability rights groups as well as parent advocates have been trying to get this particular place closed since it was known as the BRI back in the eighties, and they have had very little luck even when people were dying there under suspicious circumstances, so it's going to take something major to do it.
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"In my world it's a place of patterns and feel. In my world it's a haven for what is real. It's my world, nobody can steal it, but people like me, we live in the shadows." -Donna Williams
26 Mar 2011, 9:29 pm
