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.


Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

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