Posted in Being human

Petting the elephant

Wow, that’s an extremely upscale-looking living room that elephant’s in…

There’s a kind of person in the world.  I’m one of them.  I don’t have a name for us.  I can’t help responding to something I know is there.  This gets me in no end of trouble.  Many social rules are enforced by everyone carefully pretending that something is not there.  Many people are incapable of seeing what is there.  Many people are in denial about what is there.  Many people use glamour to obscure what is there.  Many people are fooled by glamour, their own and others’.

I am more likely than usual to see things that are there that other people don’t, won’t, or refuse to see.  I like Terry  Pratchett’s definition of First Sight:  The ability to see what’s actually there, rather than what your brain tells you ought to be there.  Of course in the real world nobody has perfect First Sight, and everyone is fooled by our own  perceptions or by other things, but I understand the concept very well.

Anyway, my problem is that I respond to what is there.

This is not a voluntary action.

This is not necessarily saying something about what is there, or doing anything at all to consciously react to what it’s there.

It’s just there and I can’t tune it out.

A friend and I who both have this ‘problem’ were once interviewed for television.  They told us to pretend the camera people didn’t exist.  We were totally incapable of not forgetting after two seconds and striking up conversations with the camera and sound crew.  We really frustrated everyone but we couldn’t help it.  They were there, we couldn’t erase them from our brains and act like they weren’t.  I’m not sure anyone totally could, but we couldn’t even pretend well.

I’m sure everyone has heard the analogy of the elephant in the living room that nobody will acknowledge but everyone knows is there.

The best summary of my entire problem here is this:

I see the elephant in the living room, and without even stopping to think, I will do something like go up and try to pet it.

That wrecks people’s whole system.

And it makes it impossible for me to avoid doing things like this, because it’s not just a matter of voluntary actions I control, which can be hard enough.  It’s hard enough to refrain from saying “Hey there’s an elephant in the middle of our living room, why is nobody talking about it?” But even if I can refrain from saying it, my actions will give it away.  I will greet the elephant, or talk to the elephant, or feed the elephant, or try to figure out if theelephant even wants to be in our cramped living room and what to do about it, or clean up the elephant shit in a way nobody can ignore, and these things are just reactions to what is actually happening.  Even if I never explicitly mention elephants, ifI am careful to avert my gaze from the elephant, I will inevitably interact with the elephant in a way few people would, and that will give everything away and piss a lot of people off.

I believe it’s important for people like me to exist in the world.  I think we have valuable roles to play, valuable things we do, and that reminding people what’s really going on is not always a bad thing.

I also think it puts us at a disadvantage, sometimes a dangerous one.  People can get very angry, for example, when you respond directly to exactly what they are doing but have carefully constructed a bunch of words or glamour to make it look like they’re not doing the thing.  And they can use it against you, to make you look crude and unrefined in comparison.  This becomes especially dangerous if there is abuse, manipulation, or neglect involved in their “invisible” actions.

And it’s socially dangerous.

But, I think, absolutely necessary.

But it’s not just a thing I do or a role I play.  I can’t turn it off.  It’s how I interact with the world.  It’s fundamental to how I perceive and respond to things.  And it has been angering people and getting me in trouble or worse, since before I was old enough to understand what I was doing.  And something in my actions always, always gives me away…


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

Snake Words: Hiding the Dystopia

Lords and Ladies by Terry Pratchett

“Elves are wonderful. They provoke wonder.
Elves are marvellous. They cause marvels.
Elves are fant

astic. They create fantasies.Elves are glamorous. They project glamour.
Elves are enchanting. They weave enchantment.
Elves are terrific. They beget terror.
The thing about words is that meanings can twist just like a snake, and if you want to find snakes look for them behind words that have changed their meaning.
No one ever said elves are nice.
Elves are bad.”
― Terry PratchettLords and Ladies

(Apologies to actual snakes.  Snakes are cool.)

The DD service system loves to pretend that it is a utopia ushering us all into an age of inclusion and empowerment and lots of other nice words.  The problem is that for a lot of us, far from a utopia, it is a dystopian nightmare.

One way they protect the illusion that it’s all wonderful is by changing the meanings of words.  They have a talent for taking a word and turning it into its opposite.

They have a term, for example, dignity of risk.  What that term is supposed to mean, is that too often people with developmental disabilities are ‘protected’ from taking risks that other people are allowed to take.  We may be forcibly prevented from drinking alcohol, or having sex, in ways that other adults are not.  Dignity of risk is supposed to mean that we have the right to do things that agencies might consider risky or dangerous.

Here is an entire Wikipedia page on dignity of risk. 

But here’s how the system actually can use it:

Let’s say there’s something that you really need them to do.  The agency failing to do that thing will result in you being in danger.  You know this.  The agency has a duty to do this thing.  You want the agency to do this thing.

The agency does not want to do the thing.

So they set up an impossible set of hoops you have to jump through in order to do the thing.  When you can’t jump through the hoops, they tell you it is your own choice that the thing is not getting done.  If you really wanted it to get done, you would jump through the hoops.  The danger you now face as a result of their neglect will now be referred to as your choice and defended with the idea of dignity of risk.

So like the fact that until recently I hadn’t been bathed in a year or two?  Dignity of risk.  Except this is not a risk I chose.  It is a risk they chose for me.

See what I mean?  They can take a word, twist it inside-out, and turn it on its head.  Until they can justify taking away all your freedoms with language designed to protect your freedoms.

The DD service system is excellent at playing this particular word game.  It can be especially confusing if they use the right meaning of the word sometimes, but the wrong one most of the time.

Always, always look for the snakes behind the words.  Because they’re there. And in the DD system, they’re everywhere.  Every word or term that has an actual meaning that is supposed to protect our freedoms and rights as people with developmental disabilities, has an evil twin that looks exactly the same but exists to take away our freedoms and rights.

Look for the snake words.  Just look for the snake words.  If you understand how they work, they will give you a window into the dystopia a lot of us are living in.