2:59am October 24, 2013

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

youneedacat:

crown-of-weeds:

realsocialskills:

In a disability context, “institution” means something like “an organization that keeps disabled folks separate from mainstream society and under the control of others”.

It used to be fairly common practice for families (under great pressure from…

I live in such a housing complex. Entirely disabled and elderly, nobody else lives here. Over a hundred residents. Everyone in town thinks we are a nursing home.
We are not a nursing home. And we are not an institution. Not even close.

This is why the building doesn’t make a place an institution.

Could you offer some kind of clear definition of what you are using the word “institution” to refer to? Because I am familiar with a handful of definitions of the term, and none of them allow me to parse this post.

But my actual apartment building is not an institution and most people here are disabled. (Whether also elderly or not.) And the rest are elderly but not disabled. The building looks institutional inside and out. People think it’s a nursing home. Etc. And it’s a shitty place to live in many ways, and the owners have even endangered residents in ways that resulted in death in at least one occasion. Still not an institution. Can’t explain the difference. And I have very good institution radar.

It really sounds like what you’re using the word “institution” for is some kind of distinction like “abusive power dynamic” vs. “non-abusive power dynamic”. Which is sort of a source of confusion, because the term had an existing meaning referring to aspects of organizational structure. But it sounds like, with your meaning, two identically-structured things can differ only in ways that aren’t part of their organization, and one can be an “institution” and one not.

This leads to a theory:

I theorize that if you were to discuss what you mean by the verb “institutionalize”, you would be much more successful in communicating the distinction, because I think what you are talking about is a power dynamic between an organization and a person. And that the problem comes from assuming that English is 100% consistent, and that if you are “institutionalized” that the other party is “an institution”, and that if the way you are treated does not match that verb’s definition, that the other party is “not an institution”.

I’m not a language-oriented person, at all – as in, every single word I use is a translation from something not-language, no matter how many words I use or how eloquently I seem to use them. 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?).

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.

Notes: