Posted in Developmental disability service system, HCBS

Clichés & Platitudes & Control & Change

word cloud, largest words are want, control, and language.
Word cloud based on the “translation” chart by Dave Hingsburger further down this page.

Normally I don’t have that much of a problem with clichés, depending on context.  Quite often, something’s a cliché because it really is true, so it’s been repeated so often because it’s a reasonably accurate way to talk about reality.  But then there’s this other kind, which grates on my nerves…

There’s two of them, actually, but they kind of work in parallel.

There’s the standard cliché platitude they give you when you’re in the hospital and you’re pissed off about something.  it runs something like this:

“It’s so hard to come in here and have to give up so much control you normally have over your life, isn’t it?”

Well yes, and no.

Yes, the hospital takes control away from you in ways that are completely unnecessary. Like, things where there’s no actual reason for you to give up control.  And where giving up control can be not just annoying, but dangerous. But that’s far from the only reason a patient in the hospital might be pissed off at the hospital.  And they try to make it sound like it’s all a personal problem, with a personal solution.  And that solution is to give up control over your life gracefully, even when it makes no sense to do so.

I encountered one today that I hear less often, but that seems to stem from the same basic source, and have the same basic problems to it.

I have a staff person who’s leaving.  She’s worked for me for longer than five years and knows more about my care than either me or my case managers.  She does work that technicallly the case managers should be doing.  They sometimes call her a third case manager.  But in reality they seem to have very little idea the sheer amount of work she does, and knowledge she has.

Anyway, I am very concerned about the way management seems to be handling her leaving.  Normally when a regular leaves, especially someone known to be knowledgeable about a lot of things, their last month at the least, is filled with training and searching for replacements. That does not appear to be happening.  She is not getting the kind of leaving that a regular staff without her degree of knowledge gets, let alone one with the knowledge she has.

I confided my nervousness in someone.

They said, “Change is always hard.”




That is not what is going on here.

I am more prepared than most people for the turnover rate in this field.  I have felt lucky the last several years to have staff who lasted for months or years.  Dave Hingsburger describes the turnover in the DD field as “Thursday” and he’s right.

I have learned to balance everyday emotional connection with professional distance, so that I don’t feel hurt on a personal level by staff changes. There’s people I’ll miss more than others, because I’m human and so are they.  And I will miss Hallie a good deal.  Just as I miss Zack and Rick.  There’s some people you do form a connection with.  But it’s a paid relationship, not a friendship, and you forget that at everyone’s peril.  Pretending it’s a friendship hurts everyone.

But at any rate.

The problem isn’t a personal connection I’ve formed with Hallie.

And the problem isn’t that change is hard.

The problem is that every time Hallie even goes on vacation, I end up with some kind of health crisis.  And management at Howard Center doesn’t prepare either me or other staff for the sheer amount and kind of work required to make up for what Hallie normally does.

Just as an example, last time she was on vacation, there was a doctor’s appointment.  And there was something urgent that needed to happen before the appointment — some blood tests.  I texted my case managers, and was basically told to handle the communication with the doctor’s office myself (something I can’t do), and otherwise to just wait until the appointment to get the blood tests (which defeats the purpose of having the results of the tests available by the time of the appointment).  And the whole thing was said in a casual manner, as if I hadn’t just been hospitalized and wasn’t about to be hospitalized again for problems the blood test was testing for.

If Hallie had been there, she’d have been in contact with the doctor’s office, and would’ve immediately taken me for the blood test.  Things would’ve gotten done. But she wasn’t, and they didn’t.  And even the doctor’s appointment was a mess because of lack of preparation.

And that’s just one example of what can go different.

She’s leaving for good now.

The case managers have not spoken a word to me about her leaving.

They apparently plan to put me on the “floater model” so that I won’t have a regular staff person at all.  Which for someone with my degree of medical issues, is a disaster.  I need someone with a stable level of knowledge about how my body works, not someone who changes every month.

Nobody asked me.

They never do.

I wouldn’t have even known if Hallie hadn’t told me.  Either about her leaving or about the floater thing.

They’re not training replacements.  There won’t be a replacement.  I was not asked or even consulted about what I thuoght was a good idea.

Major things are going to change.

They want this to happen.

Everything they do lately seems to be an assertion of their power and control over my life.

It reminds me of this chart, modified from the beginning of Behaviour Self! by Dave Hingsbuger:


Behavioural language of person with a disability English language translation of behavioural language
Hitting out I want control.
Spitting out food I want control.
Kicking the furniture I want control.
Swearing at staff I want control.
Face slapping I want control.
Refusing to participate I want control.
Care provider lingo English language translation of care provider lingo
I am concerned about your behaviour. I want control.
This programme is for your own good. I want control.
You need to learn to be appropriate. I want control.
Locking you into time out is helping you. I want control.
I’m sorry but because of your behaviour you have lost your commmunity outings, family visits, favourite foods, favourite television programmes, access to your bank account, visits from your boyfriend, access to an advocate, the right to vote at house meetings, access to the telephone, all of your civil liberties and any personal dignity you have left. I have control.

This kind of power struggle is going on right now, but nobody will acknowledge it.  But they are finding every possible way they can manage, to tell me they are the ones in control of my life.

And this kind of loss of control is a huge problem.  Not a platitude.  Not something that it’s reasonable to adjust to.  Lacking control in the ways I lack control over my life, in the ways people in the developmental service system lack control over our lives, is another one of those little crimes against humanity that gets overlooked because everyone accepts it as normal.

So no, I’m not gonna accept this gracefully.

I’m not gonna accept it at all.

And that’s not because I have a character flaw that prevents me being gracious and accepting my fate and all that.  And it’s not becuse I have trouble with change.

It’s because I have enough normal human reactions left in me that it bothers me to be treated as subhuman, and to see other people treated as subhuman.  (I know if they’re doing something to me, they’re doing it to others.  They’re not as individualized as they make themselves sound.  Most of my problems with them come down to human beings not being plug-and-play.)

And I’m getting really tired of Howard Center treating me like there’s something wrong with me for wanting the same control over my life that everyone deserves.  The kind all of them have and would be furious to have even an inch of it taken away.

I’m actually becoming a lot more medically stable.  I’m getting to where I can finally do a few things that aren’t directly related to medical problems.  In the past, my feeling better combined with Hallie leaving would mean that they were supporting both me and Hallie in getting ready for Hallie to leave.  As in, even just on a practical, logistical level, they would be helping us both prepare and vet new staff.

That’s not what’s happening.

Yet in their interactions with me these days, everything seems to translate to “I have control.”  

People shouldn’t get used to being treated like this.

Posted in Developmental disability service system

Passive-aggressive selective rule following.

Rules laywer playing card with a picture of a cyborg advisor, text reading: State-based actions don't apply to you or other permanents you control. (You don't lose the game due to having 0 or less life or drawing from an empty library. Your creatures aren't destroyed due to damage or deathtouch and aren't put into a graveyard due to having 0 or less toughness. Your planeswalkers aren't put into a graveyard if they have 0 loyalty. You don't put a legendary permanent into a graveyard if you control two with the same name. Counters aren't removed from your permanents due to game rules. Permanents you control attached or combined illegally remain on the battlefield. For complete rules and regulations, see rule 704.)
Rules lawyer playing card. Rules lawyering is a concept in role-playing games of a player who obsesses on obscure rules that benefit themselves only, to the point it interferes with everyone’s ability to play the game.

So there’s this common trick with developmental disability agencies, among many other types of agencies.  It’s deliberate, it’s passive-aggressive, and it’s obnoxious.

You start asking them to follow laws, regulations, or agency rules that would require they provide either more or better quality services.

They respond by discovering rules they’d never bothered following before, that allow them to provide less or lower quality services.  And then insisting that they absolutely must follow these rules.

I came to Vermont with an IPP.  They call them different things in different states.  In California it’s IPP (Individualized Program Plan), in Vermont it’s an ISA (Individualized Support Agreement).  It describes you and the type of services you need and why, at least in theory.  Usually it has goals and ways of reaching those goals.

I had the luck of having a very well-written IPP.  My first case manager in California had written an IPP on which I was unrecognizable to anyone who knew me, and she had literally made things up and deliberately left things off.  I had signed something saying I had been at the meeting, and she claimed that my signature meant I agreed to everything on the IPP.  When I objected, she claimed she wouldn’t be my case manager anymore and I was on my own.  (There is a way to be self-managed in California, but it turned out she was lying to me for over a year and someone was listed as my case manager, either her or someone else I never met.)  She told me if I didn’t like it, write it myself.  I was completely incapable of writing my own IPP.  I couldn’t even tell anyone what needed to be on it without being asked the precise right questions and having a great deal of difficulty answering them.

So I ended up contacting a disability rights activist from out of state who had worked in the DD system and written many IPP-like documents in his time.  He painstakingly asked me questions over AOL Instant Messenger for weeks and put together an accurate IPP, which then got put in my file as my official IPP, and I didn’t have IPP trouble from there on out.  It got modified over the years with time by different case managers but the basics stayed the same.  I’m very grateful to that person.

So when I moved to Vermont, my first case manager was as incompetent as my first case manager in California.  And part of my IPP involved a section on how to communicate with me in ways that were cognitively accessible to me.  I have problems with understanding language, and understanding certain concepts.  I often need things explained to me or rephrased.  At minimum.  He was asking me to do important things, that I couldn’t understand because he used jargon I was unfamiliar with.  When I asked him to explain, he either wouldn’t explain or would send over the same stack of papers I couldn’t read.  This kept happening, and the more it happened the more he’d insist I agree to do something I didn’t understand what I was agreeing to.  And I wouldn’t agree without understanding, and he started failing to communicate with me at all except to demand I agree to this thing.

There were other, worse things going on too, but I want to focus on the IPP.

So my IPP contained an entire section on how to effectively communicate with me.  I and my DPA both told him a zillion times to comply with this section of the IPP.  They wouldn’t.   (We were also asking that they stop sending two staff people who were incompetent to the point of dangerous med errors.  And one was crossing lines in terms of religious proselytizing and forcing me to use my own resources to promote his religion..   They kept sending them to my apartment no matter what I said, and if I turned them away I was being charted as “refusing all services” even though there were dozens of staff available to choose from who were able, willing, and even eager to work with me.  I was told nobody liked me and I had to take what I could get.  So there were other issues happening that we were fighting them over.)

But one day I got a letter in the mail saying that because of what they’d read in the IPP, they were recommending that I go to residential care for my safety and the safety of staff.  The only way I could avoid residential care is if I provided detailed documentation from my California psychiatrist and the Regional Center system of my behavior plan.  I didn’t have a behavior plan in California, so there were no documents to produce.  It turns out they’d found reference in my IPP to past aggressive behavior, and suddenly following my IPP became all-important if it meant shunting me into residential care to get rid of me.

Following the part of my IPP about communication accessibility, of course, never became a priority.

That’s an example of finding the rules they want to follow and then following them to the letter.  And doing so entirely as retaliation for asking them to follow some other rule they have no intention of following.  And then they can say, “Well you asked us to follow the rules, that’s what we’re doing!”  It’s usually in retaliation for making demands.  And since it’s within the letter of the law if not the spirit, it can be used to withhold services (including as retaliation) without appearing to break any rules.

So if they start discovering new rules, that’s one thing they might be doing.  It’s extremely manipulative on their part.  (Agencies always manipulate clients far more than clients manipulate agencies, but are quick to call us manipulative for things that aren’t.)

Sometimes they’ll even make up rules that never existed and pretend they’ve been rules all along.  Or create new rules and try to pretend they existed.

At one point I was told that in the 13 years I’d been receiving services from an agency, from a wide variety of staff and case managers, with a wide variety of attitudes towards services, something they’d been doing had been against the rules the entire time.  They said nobody had told me until now.  I don’t buy it.  They just wanted to stop providing a certain kind of assistance, and to claim that to get that assistance I’d have to leave my home.  They’ve had no problem over that 13 years telling me when there was a kind of assistance that was against their rules or that they wouldn’t provide, so I don’t buy that it was just nobody felt like they could tell me it was against the rules.

(It involves doing things for me without any pretense of Independence Theater involved.  Which, under federal law, they have to do if I can’t do something, or can’t do it consistently or safely.  They have never until now given me a shred of trouble over this issue except in the area of community access hours — at which point they had no problem telling me there was an issue — so I don’t buy anything they’re telling me about this.)

This is, again, retaliatory, and in this case pretty vicious retaliation.  And manipulative in more than one way.  They are attempting to convince me that their “service model” doesn’t support doing what they’ve been doing for the past 13 years, and that therefore I must leave my own home in order to receive the services I need.  They are attempting to do this by threatening to (or really going through with) do less and less for me, thereby putting my health and life in danger, and hoping that’ll herd me through the door into their other program.  This is both against federal disability law and massively unethical, but they don’t care about either of these things.  They get away with it, and they can claim to be following the rules, so they do it.  It’s simply an attempt to maneuver me where they want me, and punish me for complaining.  If I hadn’t told them to follow the rules, they’d never have discovered this and other rules to punish and maneuver me around with.  And they still — of course — magically haven’t discovered any of the rules we’ve been telling them to follow.  The actual rules that we know exist.

It should be noted that when I ask agencies to follow rules, it’s generally my safety at stake.  When agencies ask me to follow new or arbitrary rules, it’s generally not their safety at stake, and it generally puts my safety more at risk.  They have massive power over my life, I have very little over theirs, and this is one way of them misusing their power.  The situation is not equal in any way.  (More on false equality in another post, hopefully.)

So that’s the basic sequence of events:

  1. You ask them to follow a rule they are not following, that would help you if you followed it.
  2. They retaliate by finding a different rule (or making one up), one that hurts or inconveniences you, and following it to the letter.  This is punishment for asking them to follow rules.
  3. They will almost always fail to follow the rule you told them about.  If they do follow it, they will try to find ways to follow it in letter but not in spirit, or follow it in as small a way as they can get away with.
  4. They will, however, follow the obnoxious rule they found or made up, as thoroughly as humanly possible.
  5. They may say (sweetly and with a smile if they want to be extra nasty and Nice Lady Therapist about it) that they’re only following the rules like you said to do…

And so the mind games continue…

Posted in Developmental disability service system

How they talk about us in private versus public.

It was pretty offensive. I mean what was said, sometimes, outside of earshot of clients, was just appalling. I mean the manager of my building was referring to them as “retard” — “retard” I think was one of the terms he would use, they had other words, but they were derogatory words.

Of course what’s written up, and everything that’s said in public, and if you’d have gotten some promotional material from the ARC…

It’s dressed up about how, things about “client independence” and “self-determination,” all this wonderful stuff. And “achieving potential”, and all that wonderful crap. While it’s not actually going on. Also you can’t forget “caring” for people. Actually if what happened bore any resemblance whatsoever to printed material, both internally and externally, the material we were trained on, the written material we received during training, and the material handed out to parents generally on the outside who were considering placing their children in these kind of situations — adult children I might add. The literature. If anything that was being written is true, those would’ve been wonderful places. But none of it was true. I mean I was very often informed that “This is the way it’s written, but this is the way it’s actually done.” This is what’s written, this is what’s actually done. They would read off policies to us and the same person practically in the next breath would violate them. But we had to know what the official policies were, the official line.

Those institutions will grab onto whatever the current fad is, claim it for themselves, and twist it beyond all recognition. Name the trend, they will adopt the language and twist it beyond all recognition. I’ve oftentimes observed that the real difference between the supervised apartments that I worked in and any of the state hospitals I was in, was basically a coat of paint on the wall. You know, you change the color of the paint, paint it nice, and plunk a different picture on the wall or something, and hey, it’s a “supervised apartment” setting.

They put a coat of paint on the wall, and bang, it’s supposed to be different now. And they change the words, so as to match what everyone wants them to be, and then they go ahead and do what they’ve always been doing. One of the reasons I really hate it when organizations change names and labels and stuff like that. Because you can’t change anything by changing the name except maybe the stationery. Why not call it what it’s always been called? Don’t play games with names.

I don’t think the word self-determination should be used by absolutely anybody who is not themselves developmentally disabled, or otherwise disabled. That term should not be used by their caregivers. Ever. Because the caregivers do not have a right to it. Or so-called caregivers or whatever you want to call that. It’s debatable as to what’s provided is comparable to the word care, in the usual definition of the word.

I mean one of the things that I very vividly remember, to give you an example of some of what went on there: One of the guys there had a girlfriend who was also in some kind of group home setting. And they decided they wanted to get married. The official policy that we all learned was that these people are free to do what they want to, that it’s their choice, but the person at the head of the house just basically said, “No, he can’t go visit her anymore. No, they will not get married. Period.” Although she theoretically had no right to do so, and basically her argument was that this would just be too much work for us.

Which is typical of what goes on, the official, wonderful label versus the actual reality. They’re not the same. Ultimately those organizations are run for the convenience of the staff. And that’s exactly what you’ll get when all power lies with the staff.

-Laura Tisoncik, 2004 interview

In the above interview, Laura Tisoncik is discussing her work in the developmental disability system as front-line staff.  She herself has a developmental disability, but in this context she was staff, so she was able to see what staff said when they thought none of us could hear them.

I’ve often been in a position to hear how staff talk about us as well, for different reasons.  Sometimes people don’t believe I can understand what they’re saying.  So I get to hear some shockingly frank discussions of me and other people with developmental disabilities sometimes.

Also, just so you know, retard is not a word you should ever be using.  It’s like a knife wound to the gut for most of us.  I’m using it because I want to highlight what an ugly word is being used, a word that means you are not even fully human to any of us it is applied to.  (And it is applied at one time or another to all people with developmental disabilities regardless of diagnosis.  It comes out of an old term for intellectual disability, but when people say it to us and about us, they don’t restrict it to people with ID.)  But in general it’s not a word you should use.  It’s a word that says, “You are something less than a thing, something disgusting, something that shouldn’t exist, something that isn’t right.”  The damage it causes is considerable.

Yet even when they’re not saying it, they’re often thinking it.  And we can usually tell.  You don’t have to hear the word to feel its impact, if it has ever been applied to you in any serious way.

At any rate, this gets back to the snake words somewhat, in what Laura is saying about brochures.

But it also gets back to other things.

Which is that there’s a public face and a private face of how the developmental disability system sees us.

And the public face is that beautiful utopia promised in the brochures.

And the private face can be a hellish dystopia with the word retard around every corner, embedded in every action even when it is not spoken aloud.

People who work in the system get visibly nervous when they find out that some of my advocates and cognitive interpreters have worked in the system.

Because that means they know that my advocates won’t buy their bullshit.

A lot of people do buy their bullshit.

We are pressured into at least acting or feeling like we buy their bullshit.

Sometimes it really feels like everything should be wonderful.  But there’s always this feeling deep down in your gut telling you something has gone horribly wrong.

If you’re lucky, you’ll know there’s something wrong outside of you.

If you’re unlucky, you’ll decide there’s something wrong inside of you that you are not happy despite the utopia you are placed in.  And then you will squeeze yourself into tinier and tinier containers, trying to get out of the way of the system that is crushing you alive.

Meanwhile you have to fight for the system and say the system is great, because hey you’re not in an actual institution, you have your own home, you have things that are more than you ever expected you could have.  And if you say too many bad things, the VOR and their ilk will come along and use it to justify traditional institutions.

It’s really confusing.

But it’s enough to say, what they really think about us, and what they say they think about us, are two entirely different things most of the time.  Unfortunately, most of the world believes their public face.  They don’t see the nightmares many of us are living.  They don’t say what is said and thought and acted upon behind closed doors.

Posted in Developmental disability service system, Self-advocacy

They don’t even pretend about due process.

A statue of the blindfolded Lady Justice holding scales and a sword.
A statue of the blindfolded Lady Justice holding scales and a sword.

In the developmental disability system, you can basically be sentenced and convicted of crimes, and they don’t even pretend due process is a thing.  Some of the crimes are actual crimes, some are not.  But they can write them in your permanent file on the strength of gossip alone.  And then they can decide what to do to you for it.  There is no trial.  They don’t even pretend.  Their word about you and about what to be done about you is law.

I once got pissed at a lady who was running a self-advocacy group.  She was technically not running it, she was facilitating it.  But many nondisabled facilitators run the self-advocacy group and tell people with developmental disabilities what we should be doing.  They control us.  And that’s what i saw her doing, and that’s what pissed me off.

If you want to know more about the way facilitators can control us in self-advocacy groups, read Dave Hingsburger’s article “Cutting the Strings:  Suggestions for Self-Advocacy Groups”.  It is available in this PDF link from the Green Mountain Self-Advocates 2010 Handbook.  It starts on page 120.

Anyway, I saw her doing this.  I got pissed.  We got in an argument.  My staff person was there with me the whole time.

I found out the next day that there were Things written in my file.

Thing #1:  AWOL

Thing #2:  Hitting the facilitator hard in the upper arm.

Thing #3: Trespassing

What actually happened was that I got pissed and walked out of the room.  I came close to her but did not hit her or make a move to hit her. (There were witnessses, too.)  Because of the way movement works for me, my legs carried me all the way across a street until I bumped into someone’s fence in that driveway.


I didn’t actually hit her.

AWOL, Absent WithOut Leave, is a weird term to apply to an adult.  I was unaware I needed leave to walk out of a room for any reason whatsoever.

And in the state of California, walking up someone’s driveway and bumping into their fence is not trespassing.

My staff person, who was there the whole time, defended me to the Regional Center and said none of these things had happened.

My staff person was labeled ‘renegade staff’.

They can write anything about you.  And what they write can change what kind of manipulation and behavior programs you’re subject to, as well as take you out of your own home and put you in a group home or other institution.

So if someone doesn’t like you challenging their power, they have the ability to throw that power around by accusing you of crimes.  They don’t have to prove you did anything.

Office gossip about clients can also end up in our files, permanently.  We are not always told what is in our files.

But bottom line, in the DD system, you can be charged, convicted, and sentenced for real or imaginary crimes.  Without a trial. Without even being told.

Posted in Developmental disability service system

Walls and doors

An Accent 800 communication device showing the main Unity screen with some of the words from this post at the top.
How I wrote most of this post.

You think I don’t see what you are doing.  You think what you are doing is okay or even good.  Sometimes you don’t even notice what you are doing.  But you are doing it.  And I see you.

Understand that, if nothing else:  I know what you are doing to me.  I feel what you are doing to me.  I may not be able to put into words exactly what you do or how you do it.  I might not be able to resist the ways you are changing me.  I might not be able to stop you.  But I see you, I know what you are doing, I am awake and you can’t put me back to sleep.  And now, finally, I am able to tell you and the rest of the world what you’re doing and why it’s hurting people.

First, though, who I’m talking to and why.  Because it is important to understand what I am and am not saying, and to which people  And who I am and why I’m writing this.  Every thread woven into this fabric is important.  Leaving out any will only confuse things.  I’ll start with myself.

First I’m a human being.  I don’t want to go into too much detail, so this is the information that seems important.  I am 37 years old.  I have been a client of the developmental disability system for my whole adult life.  I’ve spent all my life fighting to be a human being in a world that sees people like me as something closer to things than people.  Words have never been easy for me, but I’ve struggled to achieve the ability to see things nobody talks about and then describe them in language.  I have achieved a lot in that area, but it’s come at the cost of other communication abilities.  Hence I can sometimes write eloquently about complicated topics, yet not be able to tell you something supposedly simple, even if it’s important.  And each topic can take years to learn the words for:  Please remember I’ve spent 37 years with no ability to describe today’s topic, and only a day and a half able to tell you what I can see.

So that is all you need to know about me right now.  So I’ll tell you a little about you.  Because my intentions are different towards different people as I write this.

Some of you are nothing but cold-blooded manipulators.  You know already what you do and don’t care.  I will tell you this:   I see you.  And most people in my situation are perfectly aware of you.  My goal is to show the rest of the world what you do, so that you will be less able to do these things.

Some people are not sadistic or are convinced, one way or another, that what they do is okay, or at least harmless, or at least they mean well.  Their behavior is not okay.  To you, I want to say I see you too.  I do care that some of you mean well or don’t fully understand the harm you do.  But the harm remains, anyway.  The more you hide from the reality of what you do, the more you’ll keep doing it.  And people like me bear the brunt of the harm.  So you need to stop a denial that might protect yourself but doesn’t protect us.  And you need to stop finding ways to justify your actions to yourself.

Some of you, like me, experience this manipulation firsthand.  If you’ve never known what was happening, I’m sorry to be the bearer of bad news.  If you’ve already noticed, then I’ll say you’re not alone.

But I have a broader message to everyone.

We see what you’re doing.  We know what you’re doing.  We feel what you’re doing.  We understand what you’re doing.

You manipulate us by restricting our choices.  You make it easy to do what you want us to do.  You make it more difficult to do what you don’t want us to do.

Imagine our possibilities as an open field where we can walk in any direction.  You put walls in the field so that we can’t walk in the directions you don’t want us to walk in.  You then put doors in areas you might want us to walk in.  Then you hold open the doors.

So you stop us from doing what you don’t want to do.  And then you make it easy to say, “Here’s the only direction you can go.”  Even though the only people restricting which way we can go is y’all in the first place.

The walls can take the form of discouragement or threats.  They can also just take the form of making it harder to do things in those directions, in ways that can be very subtle.

Let’s say you want me to engage in some independence theater with you.  So you want me to bend down and put cat food in the cat food bowl.

So any time I ask for help or mention the cat is hungry, you basically ignore me.  You may pretend I didn’t say anything.  You may try to make yourself look so busy that you couldn’t possibly crack open a can of cat food and spoon it into a food bowl for 30 seconds.  You may talk about all the things you have to be doing right then.  You might say “I’m not doing that for you.”  You might keep doing what you’re doing, pointedly ignoring what I said.

That’s the walls.

Then the door is that you will try to make it easier for me to just do the cat food than to ask for help.  You might ‘redirect’ me towards doing it independently by telling me out loud that I can or should do it.  You might tell me exactly where the cat food and other supplies are.  You might even get the supplies out and give them to me or put them near me physically.  All of these things are opening doors towards me doing it myself.

That is just one example.

It doesn’t have to be independence theater.

You can do this with literally anything you want us to do:  Actions you want us to take and not take.  Thoughts and feelings you want us to have and not have.  All you have to do is make it hard for us to do anything but what you want us to do, and then make it easier for us to do the thing you want us to do.

You have no problem with this, usually, because you think you know better about our lives and choices than we do.  You think you know what’s best for us.  The only issue is move us in that direction.  So you do.  And if you are skillful enough, you can maneuver us into doing what you want without ever saying exactly what it is you want out of us.

But we see you.  Oh, we see you.  We see what you are doing.   And that is why I am writing about this.

I owe more than half of this blog post to the Unity software on an Accent 800 by Prentke Romich.  I started writing it a long time ago and finished it today as part of my series on what the developmental disability service system can be like.


Posted in Developmental disability service system

We are living out their dreams.

We are living out the dreams of the people who run this system that is supposed to exist for our benefit.

They have detailed, elaborate dreams for us.  Sometimes to make them feel good about themselves, sometimes to make themselves look good to others, sometimes a little of both.  Sometimes to feel like they’re making a difference.

We take on their dreams as our own.  We live them out as living dolls.  It’s especially confusing when their dreams are similar to things we want.  But quite often, we just go along.  Quite often, we learn that what they want of us is what we want.  And if we don’t go along, we can encounter huge amounts of trouble.

They’re skilled at manipulating us in ways that they are not always fully aware they are doing.  Sometimes they sincerely believe they are helping us do what we want.  Instead we are doing what they think they’d want in our place.  Or just doing what they want for us.

And we have to smile and be grateful and pose for the brochures.

And we can have our real dreams taken away — the little bit of them we get — if we show we are not satisfied with their dreams for us.

This can be brutal.  At its worst, it’s violation, puppetry, at a deep level.  We are human beings.  We have minds of our own.  Some of us manage better than others in these circumstances.

And if we say we don’t want these things, that threatens their entire self-concept, so their reaction can be out of proportion, even dangerous to us.