institutions

Some signs that a place might be an institution

Lack of accomodation for disability:

  • An organization workign with disabled or elderly or sick people ought to have a clue about access and adaptability
  • If they don’t, it’s a major red flag
  • Some examples:
  • If there are a lot of people who need wheelchairs, and none of them have personally-fitted chairs, that’s a red flag. If everyone is using an institutional wheelchair, it’s probably an institution
  • If there are a lot of residents who have limited use of their hands, and no one has any adaptive equipment for doing things like changing TV channels, it’s probably an institution

People conflate patient/client opinions with family opinions

  • For instance, if they claim that everyone there wants to be, but then they only talk about what family members say about it
  • If it’s a place people can be put into by their family members without any attempt made to see if they consent
  • If all the information on a website is for family members or social workers, and none of it is directed at people who might live in or get services from a place, it’s probably an institution

If people need staff assistance or permission to contact the outside world

  • If people who can use phones independently don’t have access to phones without asking first, it’s probably an institution
  • If there are no computers available, or all the computers are in public places, it’s probably an institution
  • If you need a password for the wifi and the residents don’t have the password, it’s probably an institution
  • If nobody has a personal cell phone, landline, or computer, it’s probably an institution

Concepts of functioning levels

  • If a place claims to be a last resort for people who can’t function in a normal setting, it’s probably an institution and it’s probably doing horrible things

Bragging about mundane things as evidence of being wonderful places:

  • It’s very common for institutions to loudly proclaim that they have a pool, TVs, a barber shop, a charity shop people can work in, or other such things
  • If they think this is deeply impressive, something is wrong
  • Things that wouldn’t be particularly notable in an apartment building or neighborhood shouldn’t be particularly notable just because elderly or disabled people are involved
  • If people think they are, it’s probably an institution, and it’s probably intentionally confusing clients about what it means to be free and in the community

If people involved are required to regularly praise it

  • Everyone is disgruntled with workplaces or other aspects of their life sometimes
  • Free people express this sometimes
  • If everyone involved in an organization says it’s wonderful, and you can’t find anything people it serves are willing to complain about, something is wrong
  • This is particularly the case if the wall or website is full of testimonials about how great it is
  • And also particularly the case if people are regularly required to sing songs praising the place

If there isn’t serious regard for the privacy of people the organization serves

  • For instance, if there is a description of every single resident and their activities available on a public website, something is wrong
  • If you are brought into someone’s room without their freely given consent just so you can see what the rooms look like, it’s probably an institution

ABA therapy is not like typical parenting

withasmoothroundstone:

realsocialskills:

Content note: This post is about the difference between intense behavior therapy and more typical forms of rewards and punishments used with typically developing children. It contains graphic examples of behavior programs, and is highly likely to be triggering to ABA survivors.

Anonymous said to realsocialskills:

I just read your thing about people with disabilities and their interests. Don’t people do the same thing to typical children? Restrict access to things enjoyed until act ABC is completed? For example, growing up, I was only allowed to watch tv for 1 hour a day IF I finished all of my homework and schoolwork related things first.

realsocialskills said:

It’s not the same (although it has similar elements and I’m not a huge fan of the extent to which behavior modification techniques are used with typically developing children either.)

Here’s the difference: Most children actually should do their homework, and most children have interests other than television. Typically developing children are allowed to be interested in things, and supported in pursuing interests without them becoming behavior modification tools.

(Another difference: intense behavior modification is used on adults with developmental disabilities in a way that would be considered a human rights violation if done to typically developing adults.)

Using behavior modification tools for one or two things in a child’s life isn’t the same as doing it with everything in someone’s life. Intense behavior therapy is a violation on a level that it’s hard to describe.

Intense behavior therapy of the type I’m talking about typically involves:

  • Being surrounded by people who think that you’re broken, that all of your natural behavior is unacceptable, and that you need to be made to look normal in order to have any hope of a decent future
  • Having completely harmless things you do pathologized and modified (eg: having hand flapping or discussing your interests described as “a barrier to inclusion”)
  • Having those things conflated with things you do that actually *are* a problem. (eg: calling both head banging and hand flapping “sensory seeking behavior” and using the same reinforcers to eliminate both)
  • Being forced to stop doing things that are very important to you, by people who think that they are pointless and disgusting or “nonfunctional” (eg: using quotes from TV shows to communicate)
  • Being forced to do things that are completely arbitrary, over and over (eg: touching your nose or putting a blue ball in a red box)
  • Being forced to do things that are harmful to you, over and over (eg: maintaining eye contact even though it hurts and interferes with your ability to process information)
  • Having everything you care about being taken away and used to get compliance with your behavior program (eg: not being permitted to keep any of your toys in your room)

(Behavior therapy often also involves legitimate goals. That doesn’t make the methods acceptable, nor does it make the routine inclusion of illegitimate goals irrelevant.)

Here’s an explicit instruction from a behavior expert on how to figure out which reinforcers to use for autistic children:

Don’t assume that you know what a child with ASD likes. It is important to ask a child, observe a child or perform a preference assessment. When asking a child about reinforcers, remember that multiple reinforcement inventories can be found on the Internet.

You can also simply sit down with a child and ask them questions like “What do you like to do after school?” or “What’s your favorite food?“or “What toys do you like to play with?”

When observing a child, set up a controlled environment to include three distinct areas: food, toys, and sensory. Then allow the child somewhat free access to this environment.

Watch and record the area that the child goes to first. Record the specific items from this area that the child chooses. This item should be considered highly reinforcing to the child.

Continue this process until you have identified three to five items. Remember that simply looking at an item does not make it reinforcing, but actually playing with it or eating it would.

Notice how it doesn’t say anything about ethics, or about what it is and isn’t ok to restrict access to. This is about identifying what a child likes most, so that it can be taken away and used to get them to comply with a therapy program. (Here’s an example of a reinforcement inventory. Notice that some examples of possible reinforcers are: numbers, letters, and being read to).

People who are subjected to this kind of thing learn that it’s not safe to share interests, because they will be used against them. That’s why, if someone has a developmental disability, asking about interests is often an intimate personal question.

This isn’t like being required to do your homework before you’re allowed to watch TV.

It’s more like:

  • Not being allowed to go to the weekly meeting of the science club unless you’ve refrained from complaining about the difficulty of your English homework for the past week

Or, even further:

  • Not being allowed to join after school clubs because you’re required to have daily after school sessions of behavior therapy during that time
  • In those sessions, you’re required to practice making eye contact
  • And also required to practice talking about socially expected topics of conversation for people of your age and gender, so that you will fit in and make friends
  • You’re not allowed to talk about science or anything else you’re actually interested in
  • You earn tokens for complying with the therapy
  • If you earn enough tokens, you can occasionally cash them in for a science book
  • That’s the only way you ever get access to science books

Or even further:

Being a 15 year old interested in writing and:

  • Being in self-contained special ed on the grounds that you’re autistic, your speech is atypical, and you were physically aggressive when you were eleven
  • Having “readiness for inclusion” as a justification for your behavior plan
  • Having general education English class being used as a reinforcer for your behavior plan
  • Not being allowed to go to English class in the afternoon unless you’ve ~met your behavior targets~ in the morning
  • Not being allowed to write in the afternoon if you haven’t “earned” the “privilege” of going to class
  • eg: if you ask questions too often in the morning, you’re “talking out of turn” and not allowed to go to class or write in the afternoon
  • or if you move too much, you’re “having behaviors that interfere with inclusion”, and not allowed to go to class or write
  • or if you mention writing during your social skills lesson, you’re “perseverating” and not allowed to go to class or write

Or like: being four years old and not being allowed to have your teddy bear at bedtime unless you’ve earned 50 tokens and not lost them, and:

  • The only way to earn tokens is by playing in socially expected ways that are extremely dull to you, like:
  • Making pretend food in the play kitchen and offering it to adults with a smile, even though you have zero interest in doing so
  • You gain tokens for complying with adult instructions to hug them, touch your nose, or say arbitrary words within three seconds; you lose two for refusing or not doing so fast enough
  • You lose tokens for flapping your hands or lining up toys
  • You lose tokens for talking about your teddy bear or asking for it when you haven’t “earned” it
  • You lose tokens for looking upset or bored

Or, things like being two, and loving books, and:

  • Only having access to books during therapy sessions; never being allowed unscripted access to books
  • Adults read to you only when you’re complying with therapy instructions
  • They only read when you’ve pointed to a picture of a book to request it
  • You’re required to sit in a specific position during reading sessions. If you move out of it; the adult stops reading
  • If you rock back and forth; they stop reading
  • If you stop looking at the page; they stop reading
  • If you look at your hand; they stop reading
  • Adults interrupt the story to tell you to do arbitrary things like touch a picture or repeat a particular word. If you don’t; they close the book and stop reading.

Here are a few posts that show examples of the kind of thing I’m talking about:

tl;dr Intense behavior therapy has some things in common with methods that are used with typically developing kids, but it’s not actually the same. Intense behavior therapy involves violation and a degree of control that is not considered legitimate with typically developing children.


withasmoothroundstone said:

I was part of a behavior program where I was locked, with only one other child (we were banished from the adolescent unit for being too socially immature or some crap like that, I think the real reason was we’d banded together to take a stand against abuse that was happening in the institution on a daily basis), on the children’s ward of a mental institution,, and not allowed to go outside or walk to the cafeteria or do damn near anything normal unless I earned enough poker chips.  I also had a therapist who systematically struck me harder and harder in the leg until I made eye contact for a certain period of time.  These things are real and they are not like having to do your homework before you can watch TV.  At all.  Even slightly.  

Don't teach kids that their body is wrong

withasmoothroundstone:

realsocialskills:

Something that can happen in therapy for disabled kids is:

People hold out hope that the kid won’t be disabled anymore, when they grow up.

So they push the kid as hard as possible in childhood, and tell them (often without saying this explicitly) that if they just work hard, their body won’t be wrong anymore.

This doesn’t work.

People who are disabled as children are usually still disabled as adults. Even if the therapy helped them. Even if they gained new physical abilities. Even if they learned things from it they wouldn’t have learned without it.

Even if they learn to walk. Even if they learn to talk. No matter what other skills they acquire. Their body is probably going to stay very different from most other people’s bodies, and far from the cultural norm.

And… part of living well as a person with a disability is accepting the body and the brain that you have, and working with it rather than against it. 

Because you can’t live in an imaginary body; you can’t live in an abstraction. You have to live your own life, as you actually are. And sometimes that involves medical treatment, sometimes it involves equipment, sometimes it involved therapy - but always, it involves reality. You can’t willpower yourself into being someone else. 

Disabled kids tend to get taught the opposite message, because childhood therapy is usually cure-oriented even for conditions that aren’t anywhere close to curable. It’s about normalization, much more than functioning well.

Then they go through all manner of hell unlearning this once they’re old enough that everyone gives up on pretending that a cure is going to happen.

If you’re responsible to or for kids with disabilities, do what you can to protect them from this. Make sure they aren’t being pushed to hang their self-worth on accomplishing things that are physically impossible or implausible. Help them to understand hat their bodies aren’t wrong. Teach them that they already have lives worth living.

withasmoothroundstone said:

I was taught that either I’d be cured and 100% “independent”, or I’d be institutionalized forever.  The only two options.  This really fucked up my life in a huge way for a long time.

Thoughts on aging, assisted living, and death

When people age, they often move to assisted living facilities, either by their own choice or in response to outside pressure. Often, these facilities present themselves as being basically just like living in your own apartment, except that they clean for you, provide meals, and offer enjoyable activities.

And, when people first move in, this is generally true. People who can do the activities of daily living without help retain control over their lives, can come and go as they please, and live very similarly to people who live in their own places. But as residents age, they loose physical and cognitive abilities, and often lose control over their lives. What once looked like an apartment can look like an institution really quickly when you start to need more help.

  
    
On TV, we never see aging or death depicted very accurately. People who die on TV don’t decline over time, they’re just there until they’re not, and sometimes they look perfectly healthy in a hospital bed before they aren’t there. And sometimes, not being there isn’t dying, sometimes it’s being put into a home.
        
Real death is not like that. Real death is not usually sudden. People who die of old age normally become disabled first. On TV, when you become disabled enough for it to matter, you disappear. In real life, you are still there, you are still a person, and you still care about your life. 
     
So, if you’re old enough to be considering moving into an assisted living facility, you’re old enough that you need to plan for what will happen as you become more disabled. Don’t assume that the people who run your residence will know what to do; you will be better off if you make the decisions rather than outsourcing them to other people.
  
On valuing your life:
If you are old, people might pressure you to refuse treatment for medical conditions you have so that you will die sooner. They might euphemistically call this dying naturally or not prolonging the dying process. But there’s nothing unnatural about using a feeding tube, treating an infection, or any number of other things people might try to talk you out of. Do not get all of your medical information from people who see the world this way. Medical decisions are yours to make, and make sure that the people advising you on your care believe that your life is worth living.
    
Pay attention to the disability community as well as the aging community. Some people feel like they would rather die than come to be impaired in a way they’re dreading. Hearing the voices of people who live with those impairments and value their lives will make it much, much easier for you to get past that fear.  Everything you face physically as you age is something that some disabled folks live with long-term. They know a lot about how to be disabled and still be free, self-respecting, and live. Disabled adults who live free lives and avoid nursing homes have had to gain a lot of skills that you are going to need. Not all of what they know has reached the aging community. Learn from both. 
   
In particular: There’s a lot of fear and misinformation about feeding tubes. When people ask you to fill out a form indicating which treatment you do and don’t want, feeding tubes are one of the first things they ask about. People often see eating with a feeding tube as something like being a zombie, being undead, and living an unacceptable life. But feeding tubes are really just a way to eat and stay alive if you can’t use your mouth to eat. Similarly, breathing support is just a way to breathe. It doesn’t make you a zombie. It lets you stay alive and gives you more time to live and love and care about things.
  
Questions to consider:
  • When I am no longer able to walk as far as I want to go, how will I get a good wheelchair and learn how to use it?
  • If I lose the ability to speak, how will I communicate? 
  • If I develop dementia, how will I communicate as I decline cognitively? What do I need to do now to make sure that if I develop dementia, I will still be treated like a person?
  • If I need assistance in the activities of daily living, will I still be able to decide how and when to do them, or will those decisions be governed by staff convenience?
  • If others decide that I am a fall risk, will I still be able to make my own decisions about when and how to get out of bed, and whether to use a bed alarm?
Just, generally speaking - your life does not end when you become disabled. It just changes. When you become disabled, your life will still be worth living, and you will still care what happens to you. Don’t let anyone talk you into devaluing it, and plan to keep your freedom.

youneedacat:

Social skills for autonomous people: The word “institution”

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…

youneedacat said:

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.

There are institutions that don’t look like “institutional” buildings.

There are places that look like “institutional” buildings. Including where I live. That are absolutely not institutions. Even when they’re shitty in other ways because subsidized housing often is.

Things that make me shiver and want to throw up: The “hospital without walls” program. Terrifying. Definitely an institution. But each resident lives in their own apartment in separate apartment complexes. They think it’s progress. It’s awful. I’ve seen similar institutions for DD people. I call them “distributed institutions”.

This is why I can’t give an exact time frame for how long I was institutionalized. I spent a total of a year and a half, roughly, in locked mental institutions and residential facilities. But I was also in community institutions and distributed institutions. This messed with my head far worse than being locked up.

That’s why these things are important.

The place I get services from is sometimes institutional and sometimes not depending on what clients they serve. They don’t believe they are institutional at all. This is dangerous.

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.

Clarification regarding praise as a red flag

Obviously people don’t badmouth their organization to outsiders their organization is trying to recruit; doing so is unprofessional.

I’m talking about a different thing.

The thing where staff spend an extraordinary amount of time praising the organization and press people it serves to do so as well.

And in which it’s really hard to find any criticism *anywhere*, and where people are really forcefully saying how great it is, in a way that goes way beyond professionalism and recruitment spin.

Does anyone know a better way to describe the thing I’m talking about?

The word "institution"

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 doctors and state authorities) to send their disabled children to residential institutions and then have no further relationship with them. That’s fallen out of favor in the past couple of decades, but a lot of the underlying power dynamics remain in service providers in other settings.

For instance, group homes are often referred to as being “living in the community” rather than “institutions”, but they also often have identical power dynamics.

Similarly, some places will say that they are not institutions but are rather “intentional communities” or some sort of utopian village because they are farms and cottages rather than big harshly lit buildings. But again, they have the same power dynamics.

The power dynamics can be hard to spot if you don’t know how to look for them, because a lot of institutions will go out of their way to pretend they’re doing something fundamentally different.

crown-of-weeds said:

Some handy ways to spot institutions, for my followers!

If an adult has a bedtime, it’s an institution.

If an adult can’t make a burrito at midnight just because they want to, it’s an institution.

If you can’t fire your staff without losing your home, it’s an institution. (Jargon version: if housing and service provision are linked, it’s an institution.)

If more than six disabled people are living there, dollars to doughnuts it’s an institution.

If everyone says it’s the residents’ choice to live there, but all you can find is quotes from family members, those residents are under guardianship and it’s an institution.

realsocialskills said:

I’ve seen the thing about more than six before, but I’ve also seen it disputed, and I don’t really understand that rubric.

It seems to me that six people is *easily* enough people to have that kind of dynamic. I think four is too. Aren’t there group homes with four adults?

Also, there are things like subsidized housing complexes for elderly and disabled people that don’t link service provision and housing. Do you regard those as institutions? I thought that they often weren’t.

Two kinds of praise that set off red flags are - lots of praise for normal things like “we have a cafeteria with varied, healthy food!!! And the menu changes!!!” or something similar. And also a lot of buzzwords and words that sound happy like “empowerment” etc. But they don’t ever tell anything they *do* to empower people. It’s just show without substance.
realsocialskills said:
Yes, those are good examples.
I think there’s also a thing where testimonials can be a red flag. Sometimes testimonials are just examples that illustrate that an organization can work for people, and that make it clearer what it does. Sometimes testimonials are brought as evidence that the organization is purely wonderful and that it is absolutely great for everyone involved no matter what.
All real places suck for some people, and organizations that are committed to not noticing this do some scary stuff. It doesn’t mean that good organizations talk about who they suck for on their promotional materials - most don’t and shouldn’t.
Good organizations don’t try to prove that they’re perfect for everyone, though. They try to show that they have something valuable to offer. That’s a huge difference.

Some signs that a place might be an institution

andreashettle:

realsocialskills:

Lack of accomodation for disability:

  • An organization workign with disabled or elderly or sick people ought to have a clue about access and adaptability
  • If they don’t, it’s a major red flag
  • Some examples:
  • If there are a lot of people who need wheelchairs, and none of them have personally-fitted chairs, that’s a red flag. If everyone is using an institutional wheelchair, it’s probably an institution
  • If there are a lot of residents who have limited use of their hands, and no one has any adaptive equipment for doing things like changing TV channels, it’s probably an institution

People conflate patient/client opinions with family opinions

  • For instance, if they claim that everyone there wants to be, but then they only talk about what family members say about it
  • If it’s a place people can be put into by their family members without any attempt made to see if they consent
  • If all the information on a website is for family members or social workers, and none of it is directed at people who might live in or get services from a place, it’s probably an institution

If people need staff assistance or permission to contact the outside world

  • If people who can use phones independently don’t have access to phones without asking first, it’s probably an institution
  • If there are no computers available, or all the computers are in public places, it’s probably an institution
  • If you need a password for the wifi and the residents don’t have the password, it’s probably an institution
  • If nobody has a personal cell phone, landline, or computer, it’s probably an institution

Concepts of functioning levels

  • If a place claims to be a last resort for people who can’t function in a normal setting, it’s probably an institution and it’s probably doing horrible things

Bragging about mundane things as evidence of being wonderful places:

  • It’s very common for institutions to loudly proclaim that they have a pool, TVs, a barber shop, a charity shop people can work in, or other such things
  • If they think this is deeply impressive, something is wrong
  • Things that wouldn’t be particularly notable in an apartment building or neighborhood shouldn’t be particularly notable just because elderly or disabled people are involved
  • If people think they are, it’s probably an institution, and it’s probably intentionally confusing clients about what it means to be free and in the community

If people involved are required to regularly praise it

  • Everyone is disgruntled with workplaces or other aspects of their life sometimes
  • Free people express this sometimes
  • If everyone involved in an organization says it’s wonderful, and you can’t find anything people it serves are willing to complain about, something is wrong
  • This is particularly the case if the wall or website is full of testimonials about how great it is
  • And also particularly the case if people are regularly required to sing songs praising the place

If there isn’t serious regard for the privacy of people the organization serves

  • For instance, if there is a description of every single resident and their activities available on a public website, something is wrong
  • If you are brought into someone’s room without their freely given consent just so you can see what the rooms look like, it’s probably an institution

andreashettle said

One disability rights advocate and blogger, Dave Hinsburger http://davehingsburger.blogspot.com, has proposed what he calls (if I remember right) the “midnight burrito test”: Can a resident wake up in the middle of the night and zap themselves a burrito for a late night snack just because they feel like it?  If no, then it is probably an institution.

He discussed that in an issue of his organization’s newsletter for direct support workers.

Relevant quote:

With power comes the temptation of tyranny. We can end up saying “no” because we can … not because we need to. Every time someone asks for permission, for information, for assistance, the imbalance of power becomes greater. Their need of something from you, therefore, exacerbates the already existing hierarchy that comes with the role of support provider.

Have you ever heard of the ‘burrito test?’ I hadn’t until recently when someone posted a comment on my blog regarding the issues of power, control and food. The Burrito Test is stated quite simply, again from the comment on my blog: “Can the resident make and eat a microwave burrito at midnight if they so desire?” This comment has resulted in me having several conversations that I would never have had before. Most people I spoke to, from several different agencies, after careful consideration said the answer would be, in most cases, “No.” 

“What he would have wanted”

Talking about what someone would have wanted only makes sense if that person is dead.

If the person you’re talking about is still alive, talk about what they do want.

And assume that they want to live. Almost everyone does.

Even if they’re brain damaged, even if they’re in pain, even if they have dementia, even if they no longer recognize people.

They’re still a person. They’re still there. And they still want things.

So don’t ask what they would have wanted. Ask what they do want.

Remembering that people with disabilities have always existed

Content warning: This post talks about institutionalization in graphic terms. Proceed with caution.

Sometimes people say things like this:

  • “When I was a kid, no one had all these learning disabilities and syndromes!”
  • “We’re all so much sicker these days. I never heard of all these diseases until recently.”

And - people who say this? You know why you never met anyone like this as a child?

Because, when you were a kid, people with learning disabilities, syndromes, illnesses, etc weren’t allowed to go to your school. A good percentage of them weren’t even allowed to live in your town.

They were kept away from people like you, and kept in horrifying conditions, so that you and other more socially valued people wouldn’t have to see them or know they existed. (It’s not your fault. You were a child and didn’t know. But it was done in your name, partly.) And a lot of them did not survive childhood because they were not given the care that would have made it possible. And this isn’t over. This still happens.

(And people with disabilities are still afraid of it happening to them).

But thing are getting a bit better - or, more accurately, people who have been fighting this evil for decades are starting to win.

So, these days, many children like those who were carefully kept away from you and your peers are allowed to grow up in families. In schools. As part of their communities. Visibly. And, this means more of them are suriving childhood.

And some adults with disabilities are now treated as adults and allowed to acknowledge disability without forfeiting adulthood. Not everyone, not yet. Not enough. But some. More than there used to be, fewer than there should be.

People with disabilities have always existed. And the fact that everyone now has to notice that they exist is a dramatic improvement. It’s a good thing that you see more people with disabilities now. It means some of them aren’t brutally hidden in institutions. Your children are growing up in a better world than you did. Remember this.