5:49am October 24, 2013

➸ Social skills for autonomous people: The word "institution"

youneedacat:

I’m not a language-oriented person, at all. So I can’t offer you definitions of just about any word, let alone a word as nebulous as “institution”. If disability scholars can’t all agree on what it means, then why should I be able to give you a definition? There are lots of words in lots of languages that don’t have easy definitions. And I’m certainly not the one assuming that English (or any other language) is 100% consistent, I’m usually the one arguing that there are many definitions of things. I just take it for granted that if I’m using words, I’m using MY personal definitions of what they mean (which may change over time or even when used in different sentences… like all words, ever?).

Is there any intention that other people know what you’re saying when you do this?

But I’ll try to explain where I’m coming from. Just, in advance, please understand that I can’t dissect every word I use and provide exact and precise definitions and explanations for everything I say. I’m doing the best I can.

First off, as far as commonness goes… I do know that whatever my definition is, it’s fairly consistent with the definitions used by the Community Imperative conference that met in 2002 in Oakland, California, where they made clear that it’s possible to have an “institution of one”, meaning an institution with only one resident. It’s consistent with definitions used by people far more respected in the realm of disability ethics and politics than me, such as Dave Hingsburger and Cal Montgomery. So it’s not a completely unique definition that I invented, in fact I learned it from disabled people in just about every branch of disability advocacy (DD, phys-dis, mental health, etc.) So whatever definition I use seems to be a fairly common one among disabled people who are involved in the effort to stop institutions in all forms.

Which makes me suspect that the reasons disability advocates have come to these definitions are very specific and important:

One… they recognize the commonality of experience of a wide variety of disabled people. The experience people in developmental centers, nursing homes, “state schools”, state and private mental hospitals both large and small, etc., has fundamental commonalities, and all of these things have been referred to as institutions.

Two… and this is where it really gets important.

People started trying to close the “obvious” institutions. The things nearly everyone calls institutions.

But something completely sucky happened in response.

The people who ran the institutions simply made the institutions smaller and gave them new names. They called them group homes, supported apartments, mental health housing, etc.

But disabled people and family members got wise to what was going on and said no, these things still have all the essential features of institutions.

So then the people who ran the institutions did it again.

Only this time, they did it in a way sneaky enough to fool a larger number of people: They put people in housing where there were only one or two residents per apartment or house. Then they gave them the exact same kind of staffing and the exact same kind of control that had always been there. And just like with the group homes, they called it “community living”.

Disabled people were more likely to recognize this as institutional than family members, and family members were more likely to recognize it as institutional than staff, and staff were more likely to recognize it as institutional than the general public.

To make matters more confusing, real community living existed, where the disabled people had control over our own lives, rather than the staff and their superiors having control over us. And the institutional kind of community living blended with the real kind of community living, giving it a kind of camouflage.

But disabled people could quite often tell the difference. And family members could sometimes tell the difference. And staff could occasionally tell the difference. And the disabled people, family members, and staff, who could tell the difference, said “This is still the same. In nearly all essential ways it’s exactly the same as living in a group home, which in nearly all essential ways is exactly the same as living in a traditional institution.”

So the disabled people who were advocating against institutions said “This is not changed enough to not be an institution. We are calling it an institution because the main features of institutions have not gone away. The only thing that has changed is the color of the paint on the walls and the number of people living there.”

So people who share my definition of institutions say that the physical appearance of the building and the grounds is misleading and illusionary, and the primary thing you should be looking at is who has control.

So I live in a big ugly building with ugly green paint and handrails and crappy paintings in the halls, and other disabled people live in the building too. But the people who run the big ugly building don’t run my life in any way. They’re just my landlords. They don’t control what I eat, who I visit with, when I get up and go to bed, who I have sex with, where I go, or what I do, except in the ways that all landlords may have rules for the building. They’re not even providing care for us.

Institutions, when talking about disabilities, generally involve people who are providing care (although that word is often quite the euphemism). And the people who provide the care are in control of the lives of the people who receive the care, in ways that would never be put up with if the care recipients weren’t disabled (or something similar).

I can say from experience that the experience for me is little different whether or not there are locks on the doors, and no matter how many people I am cooped up with. Except inasfar that the places without the locks on the doors are often worse, in my experience, because without being able to lock you in they tend to resort to a higher degree of control over you in mental and emotional ways. I’d far rather be physically locked in than trained like a dog to sit-stay. Maybe that’s just me. Except it isn’t just me because I know a whole lot of disabled people who share that opinion. Also I’ve found the places with fewer people to be worse because that means that a larger amount of abuse and power and control can be concentrated on a smaller number of people.

And my observations about size and locks and stuff are not unique. They’re common among disabled people who’ve been in a larger range of places. And they’re common among disability rights advocates who are trying to truly get rid of institutions, rather than watching them morph from one thing into another into another but never truly go away.

And it’s watching that morphing process that has caused institution to be defined the way I define it. Because if your goal is to get rid of institutions. Then you want to really get rid of institutions. You don’t want to just watch the institutions change shape.

Like imagine you’re being attacked by a bear. And you say “I don’t want to be attacked by a bear.” But the bear turns out to be a magic bear. So the bear uses its magic to shrink down to a tiny bear and says it’s not a bear anymore because it’s tiny. And it continues attacking you. And you say “no I REALLY don’t want to be attacked by a bear, and you’re still a bear no matter how tiny you get!” And then the bear uses its magic to disguise itself as a rabbit. But all the while, it’s still able to attack you in the exact same way it had been attacking you all along. Do you say “This isn’t a bear anymore, it’s a rabbit”? Or do you say “this is a bear in a rabbit suit”?

Because that’s what people with this definition of institution are doing. We’re saying “These are tiny institutions but they’re still institutions,” or else “These are institutions in community-living suits.” The essence doesn’t change just because the appearance changes.

Meanwhile… let’s say an institution closes down. And it’s converted into an apartment building. Just a regular apartment building. No matter how many disabled people happen to live in that apartment building (and given that at least one in five people are disabled, it’s unrealistic that a building with more than 30 people doesn’t have at least six disabled people, if I’m doing my math right), it’s not an institution just because the building is the same as used to be an institution. Because what made it an institution, moved OUT of the building, right?

This actually happens, by the way. Agnews Developmental Center was converted into an office building. It’s not an institution anymore.

So what exactly made it an institution?

If you can move “institutionnness” out of a building, and move something else in.

Then that means “institutionness” is not tied to the building. It’s something else. And that something else can inhabit any building of any size. And it can also inhabit many separate apartments in separate buildings all at once.

If institutions are created by what building you’re in then it should be impossible to close down an institution and open up something non-institutional in the same building. But it happens all the time. Which means that what makes an institution an institution, isn’t the building. It’s something that inhabits the building.

And what inhabits the building is a system. A system where the disabled people are not in control of our own lives.

Also here are ways that self-advocates with developmental disabilities have chosen to define institutions, a definition that is very close to mine:

Include only people with disabilities

Include more than three people who have not chosen to live together

Do not permit residents to lock the door to their bedroom or bathroom

Enforce regimented meal and sleep times

Limit visitors, including who may visit and when they may do so

Restrict when a resident may enter or exit the home

Restrict an individual’s religious practices or beliefs

Limit the ability of a resident to select or remove support staff

Restrict residents’ sexual preferences or activity

Require residents to change housing if they wish to make changes in the personnel who provide their support or the nature of the support

Restrict access to the telephone or Internet

Restrict access to broader community life and activities

An institution doesn’t have to do all of those things at once, but to me all of those things but the first one are a near-absolute sign of an institution, and the first one is a red flag but is not always an institution.

Note the second one that says more than three people who have not chosen to live together. My building has over a hundred people, but we each live in our own apartments and had a choice over whether to move here, and can choose to move out. We are able to lock our doors, can eat and sleep whenever we want, can come and go whenever we want, can practice whatever religion we want, our support staff have nothing to do with the building itself at all and therefore it has nothing to do with whether we choose them, we are of all different sexual preferences, can have sex whenever we want, can have whatever means of support we need as long as it fits with the lease, can use the phone or the Internet whenever we want, and can be involved in the rest of the community whenever we want. There are some limitations on visitors but that is unrelated to disability in any way, and is the same as non-disability-related rental housing I’ve been in before (basically making sure that we don’t have permanent houseguests who don’t have to pay rent).

Meanwhile there are clients of the same agency that provides me services (the one that varies as to how institutional it is), who live with only one staff person and have no other housemates. But who have all the restrictions on their lives that you’d find in any larger institution. Including not being allowed home at certain hours, which resulted in a horrible situation for one person who shit her pants at work and wasn’t allowed to come home and change. Adult Protective Services was called and the agency backed up the staff person, and no charges of any kind were filed. She is also not allowed to go near the kitchen or refrigerator or certain areas of the house, and is ordered around as to what she can and cannot do with her time at all times of day. The only place she has any freedom is at her job. That person is living in what the Community Imperative refers to as an “institution of one”.

Another person I know of who lived in an “institution of one”. She was, completely legally and by the full consent of the agency who provided services for her, locked in a single room of her house. That room was stripped bare of everything except toilet paper. Her every movement was controlled. Staff decided everything she did, including what she ate. When she eventually responded with violence, she was penalized with even more restrictions, leading to more violence, and more restrictions.

The agency in question had actually gotten involved with the Community Imperative people in order to look like a wonderful agency that should be allowed to take in clients who had just been removed from state institutions in the area. They had an agreement specifically that one of the state institutions would send this agency clients, thereby guaranteeing the agency got money. It also guaranteed that the clients the agency got, did not generally know about their rights and freedoms, and would not feel as if new restrictions were being placed on them when the agency decided to control their entire lives as it controlled the life of this woman. Knowing the people high up in that agency, I believe this was completely planned, as an easy way to make money. They’d undergone a change of management in which all the clients and staff who were used to actual freedom, jumped ship and formed a different agency. Clients who remained with the agency could expect an institutional living environment provided in their own apartments.

When you go from a state institution to your own apartment and see no actual change in anything but the scenery, that says that you haven’t actually been removed from an institution. You’ve just been moved from one kind of institution to another kind.

You might say there are advantages to being in your apartment or house. Such as that it’s closer to other members of the community and easier to escape. But there are also disadvantages. One of those disadvantages is that you might actually be more isolated. Another of those disadvantages is that, with that isolation, you are less likely to have witnesses to any abuse or neglect you endure. So there are differences, but the differences aren’t in the core features of what makes an institution an institution, they’re more six of one half dozen of the other, each one with advantages and disadvantages but with the core experience remarkably unchanged.

To me, as to many disability rights advocates, it makes more sense to use the word institution to describe that essential (but hard to define, really sorry about that, but it is, even for people with years of scholarship in disability studies, which I do not have) quality that is the same in al of those situations. Than to define institution by how many people live there.

If you defined institution by how many people lived there, then the following would be an institution:

Seven disabled people who happen to be friends, decide to be housemates. To save on money, they decide to pool their money collectively, to hire support staff. But they don’t hire the staff from an agency, they put out want ads and hire them and fire them themselves. They control everything that happens in their lives, and there’s no centralized authority that the support staff report back to.

That’s not institutional in any way shape or form. No matter what shape of house they decide to move into.

And in my eyes it makes more sense to describe the woman locked in a bare room and controlled in every possible way by her staff (except in that she manages to sometimes play with her own shit before they catch her, that’s the only thing they haven’t managed to control… yet) as institutionalized, than it does to describe those seven people as institutionalized.

YMMV, of course. It kind of baffles me when people assume that I’m trying to define something for everyone when I’m just talking about how I use words. I can barely use words consistently myself, let alone try to force anyone else to. But I do know that in this case the way I’m using words is not unusual in any way shape or form among disabled people interested in stopping institutionalization. Because when you try to stop institutions, and they close down one type of institutions, but the institutions don’t actually stop… then you keep calling what’s continued, institutions. It’s that simple.

The original post that sparked all this was by a person who uses the word the same way I use it, who was trying to look for ways to spot the dynamics that make things institutional. As far as I know, she wasn’t trying to Define The Word For All Time or something. And neither am I. We’re trying to talk about and hash out something very specific that’s important to us, both as disabled people and as, in her case, potential unwitting institution staff.

This is a really useful bit of commentary, and it helps a lot in understanding this.

But it does present a way of talking that is completely useless for communicating. It makes the problem dramatically worse by denying people any way to communicate their concerns to anyone who hasn’t been specifically taught this idiosyncratic usage of the word.

In short, this sounds like something that really needs to be talked about, and that would probably be talked about more effectively and to much greater effect if it were not done using terminology that is, frankly, more predisposed to preemptively rule out any possible success than anything I could have designed if I were consciously seeking to sabotage any and all attempts to solve the problem.

Basically, this use of language seems like it was a premediated choice made to ensure that people who don’t want things fixed or changed can utterly derail any attempt to get things fixed, and that people who would like things fixed but whose experience did not start exclusively with this particular community will be unable to find out what’s going on or reliably obtain information, and that any attempt to build bridges between different communities and get people more aware of the experiences other people have will fail.

This is a spectacularly bad choice of words. Maybe some groups have been doing it for a while, but unless you have the ability to go retroactively edit all the books and papers that have been written comparing “institutions” with other mental health care plans or structures, it’s very unlikely to ever work, and is very likely to lead to massive failures to communicate, and to attempts to report serious problems failing solely because people were using language in a way that the people they’re reporting to are unfamiliar with.

“Is there any intention that other people know what you’re saying when you do this?"

I told you not to pick at me over language and now you spent your entire response to me doing absolutely nothing at all, except picking at me over language.

I. Have. No. Choice. As. To. Where. My. Vocabulary. Comes. From.

None.

It’s all sophisticated echolalia.

[Mind you, this usage of institution is NOT unique to this one community. It’s just that this one community is the one that’s expanded on it the most. And it’s not that everyone in this community has all learned it from one tiny little community. It’s that everyone in this community has noticed the same exact thing and called it the same exact thing because it’s the same exact thing. But you’re starting with the assumption that institution is a bad word for this and going from there. Also, I said nothing specific to "mental health care plans and structures” at all. Institutions have never been a word owned exclusively by the mental health system and the people trying to do away with them have never been exclusively people dealing with mental illness. Generally when I talk about institutionalization that I’m witnessing in the present tense, I’m talking about developmental disability or physical disability, the two systems I’m part of at the moment. All the examples I gave are in the DD system.]

And I have very little choice, and that with only the most extreme of effort, as to what words come out of my mouth when I’m trying to communicate something. I can’t. Literally can’t. Sit there and pick over every word that comes out. I can’t. Literally can’t. Scan everything I say for words that someone has decided are somehow wrong, and then replace them with words that someone has decided are somehow better. I’m working hard enough to say things as it is, I can’t do any more than I’m doing.

Don’t give me shit for that.

Just don’t.

And don’t try and tell me that my communication isn’t good enough just because I don’t use the exact words that you would use. Or just because I don’t use the exact words that you deem appropriate. I get enough of this shit from people saying I shouldn’t say “stupid” because it’s “ableist” and things like that.

(And this is why, even though there are words that absolutely cause my brain to burn with pain whenever I see them, I never tell people they shouldn’t use those words. Because I know they might be the same way I am and I respect that even if it means I just don’t read what they write because it hurts my brain.)

Mind you I spend more effort than most people ever do, learning to hone communication more and more. That’s how I’ve gotten to the point that a lot of people actually consider me quite eloquent, despite a good deal of difficulty in this area. But I can’t do it on anyone else’s timetable or by anyone else’s standards. My brain just won’t work that way. And it really hurts to go to all that trouble and hear that whatever I do will never be good enough.

I’m willing to have a conversation about ideas, I’m not willing to have a conversation whose entire premise is that I’m using the wrong words to discuss those ideas.

And given that I’ve already said I have language trouble and your only response is “Do you actually intend to communicate when you use words?” and a lengthy rant about a single word – just one word, mind you, in a whole long post – that I use… I’m not willing to go through this with you on the off chance that this conversation will be different than every single other conversation that starts this badly in this particular area. They never end well. Ever.

So goodbye, presumably forever. I used to wade into these conversations trying to persuade people to take my communication methods seriously. I know better by now. This is posted mostly for the benefit of bystanders to know why I might not be continuing this conversation. I can’t handle conversations where literally the whole conversation is about picking apart a word I’m using. And nobody should have to handle conversations like this if they don’t want to.

Notes: