Posted in Developmental disability service system

Independence Theater

Mel gardening

Lots of people have heard of security theater.  Security theater is actions performed in public to convince the public that we are safer, but are really just for show and don’t make us any safer.  A good example of security theater is the way airports make a big show of security measures since 9/11, but have not become more secure and may actually make people less safe.  Wikipedia has a whole page on security theater.

The developmental disability system loves something I call independence theater.  Like security theater, it’s all a sham.  It makes it look like people with developmental disabilities are doing things ‘independently’.  Which makes for great pride within the agencies and their brochures about how much they’ve accomplished by encouraging our independence.  But actually they are usually creating extreme dependence of the worst possible sort, while only putting on a show of making us look ‘independent’.

One reason they do this is it’s less work for them to get us to do something physically ourselves (or appear to) than to do it themselves.  But another reason is they think independence is something magical that we should all strive for even if it harms us.  And the appearance of independence makes a lot of them feel warm and fuzzy inside, regardless of what is happening to us.

By independence, they mean physically doing something.  So they always consider it better, for instance, if we clean our own floors, than if they clean our floors.

People with developmental disabilities may have serious problems learning to clean floors, or cleaning floors once we have learned how.  These problems doing so may be physical or cognitive or both.  But they are there.  When we have problems doing these things, even if we can sometimes physically do them, forcing us to do it can lead to loss of ability to do other things when staff aren’t around.  For some of us, it can even lead to dangerous injuries:  I have severe osteoporosis and have fractured my spine without knowing how, I also have a condition that can turn a broken bone life-threatening without immediate medical attention — making me bend is not just wrong but dangerous.

Yet in the name of independence theater I have been made to bend over and weed gardens.  As a condition for participating in the gardening.  If I needed to go sit down to avoid heat exhaustion or osteoporosis-related injuries, I would no longer be allowed help taking care of my garden, and could lose the garden altogether.

I love gardening.  But there are ways of doing it safely, and there is sheer recklessness.  I was not given a choice to do it safely.  It was danger, or nothing.  At the time, I “chose” danger.  This was not a real choice.  I was not given real options.  I love gardening, I wanted to garden, and I was told this was the only way I could get help doing it.

So that picture above of me gardening.

I love the picture.  It is me doing something I love.  I have my hands in the ground, I was raised doing these things, it feels right, I wish I could garden more.

It is also a picture of me being subject to potential injury as the condition for doing something I love.

These are not the only two choices.

I could participate without injury if they didn’t insist on independence theater.

They don’t care, as far as I know.

They have asked me to bend over at home in ways that are medically not good for me.

They have asked me to wear myself out until I had no more brain left to ask for water and got so dehydrated I nearly passed out and had trouble breathing for weeks.

They have done the “I will only wash the dishes if you dry the dishes” thing.

It’s well-documented that I have medical issues that prevent these activities being safe.

It’s well-documented that many of the activities i’ve been asked to perform, I’m not actually capable of.  Despite years of ILS (Indepedent Living Skills) and ADL (Activities of Daily Living) training.  And that even when I do learn how to do something, it doesn’t make me able to use that skill on command, or use it safely.

Meanwhile, with all this talk about independence, they are actually creating extreme dependence of a very bad kind.

They want us physically independent no matter the cost or no matter what choices are.  But in other ways, they want us 100% dependent.

They want us dependent on their decisions about what is best for us.

They want us dependent on their decisions about what we are and are not capable of.

They want us dependent on their decisions of what we should be doing.

They even often want us dependent on them to decide what we want to do or ought to be doing in our free time, and how we can best do it.

They want us dependent on them to choose what will be done for us, how it will be done for us and what we must do for ourselves.  They don’t want us making those choices.

So independence theater is just theater.

And it’s dangerous theater.

And it’s mostly an illusion.

And being prodded around until you physically do something you don’t want to do or can’t do isn’t independence in any sense I’m aware of.

But they sure as hell love it.  And it gives them a great chance to neglect us while telling people (and even believing, themselves) that they’re really doing us a favor.  More of those snake words…

 

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Author:

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.

6 thoughts on “Independence Theater

  1. As an autistic person who is physically capable of doing low-skilled jobs (of a certain type) quickly and efficiently and who has been in a special ed “work program” initiative, I’d like to point out how this “independence theater” is used on those on the other side of the disability equation. You see, when I was in my special ed work program, particularly in programs where you were supposed to do things like strip covers off of magazines and books, put stuff into baggies, price stickers, and other little assembly tasks like that, I outworked every other student in my class. Yet, either the teachers never said anything, or if they did, it was to tell me to work slower – this was especially annoying in my last year, when if we finished the work early, we could go home for the rest of the day. And I know I could do the work fast and well because the one day the teacher wasn’t there, I accomplished the task I was set in about half the time they predicted (presumably, the task was picked to be small enough for a physically or cognitively disabled person to have a chance of finishing it, and if that’s the case it’s no wonder I finished early).

    The reason I think they did this, in this program, was because, if a disabled worker is very obviously seen working like a non-disabled person (as in, they work fast, aggressive, and efficient like a normal worker in a low-wage industry, where you’d be kind of surprised if someone didn’t attack their work), then it ruins their image. You can’t show images of a fast, efficient worker and overlay it with a sickly narrative of “look at how, little by little, we are slowly but surely guiding this person towards independence”. If they try to do that with a fast worker, and show that fast worker on TV, people would not see that image, they would think “What the hell are they (the worker) doing there!?”. So fast workers who end up in those programs never get the prizes, and never get shown. However, I have heard from fast workers who got trapped in a sheltered workshop (a fate I escaped by having parents who called bullshit on the teacher’s insinuation I belonged there); they have said that they had a really hard time being able to leave the workshop and form a life of their own. Because the sheltered workshop needs them to fulfill contracts – no wonder it’s hard to be allowed to leave a sheltered workshop as a fast worker. Yet, when you combine this with the fact that being a fast worker doesn’t make you present a good image of the poor disabled person who is helped benevolently, step-by-step, gradually towards independence, what you get is fast workers being the invisible backbone of the sheltered workshop, the workhorses, the cogs, if you will, no fame, no glory, no independence, not even the promise of being publicly showcased as an exemplary worker, just a fate as the beast of burden carrying most of the load with none of the exposure. And they get into that workhorse position and pushed out of even the semblance of a spotlight (that the slower disabled workers get in the name of independence theater) by the very human, very normal drive to do the best work you reasonably can in the hopes that you will be rewarded for it, and so that effort backfires horribly. And I bet some of the fast disabled workers in these shops still don’t understand how they walk into that trap, and they persist for years trying to do the best they can, thinking it will get them out of the sheltered workshop institution, because they think that if they can show they are good enough to work in a normal job, then they will be rewarded for it by being allowed to go get a normal job and leave the sheltered workshop and of course sheltered workshops, even if they state out loud that isn’t the purpose of them being there and even if they say they need the fast workers to stay, aren’t going to make any serious effort to discourage that sort of naivety, because they benefit from exploiting the fast workers for fulfilling the contract, and the slower workers for “independence theater” imagery. Which hurts both parties, because the slower workers are being degraded even when their images are shown and are not allowed to be the hero of their own story, and the fast workers never get anything remotely resembling a prize, which makes the fast worker wonder what they are doing wrong and what invisible form of “badness” is making it so they don’t get openly praised, because the fast workers think the public images amount to an award (and sometimes it’s even presented as an award, as in my own high school work program), and not the exploitation it really is.

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    1. That’s a very important amount of context to add to what I have experienced with independence theater. My experience in disability job programs (in residential facilities and special ed, and I was specifically part of the WorkAbility Program in California in high school) was pretty different, but I did see exactly the kinds of things you’re talking about going on around me with others in those programs. You’re definitely talking about something I’ve seen, and thank you for writing about it in such detail. Also — you probably know this, but making it explicit for the sake of others — the same person can end up on both sides of this at different times in our own lives. It’s not always a fixed thing, where there’s one kind of disabled person who gets one treatment and another kind of disabled person who gets another treattment and there’s no overlap or moving back and forth between both. There are also, I suspect, many other ways that independence theater plays out for individual disabled people, that neither you nor I have written about. Anyway, thank you so much for writing that, it’s very needed for context here. I have definitely seen what you’re talking about, it just didn’t end up being my focus when I wrote this. (I was thinking of very specific experiences in the adult developmental disability service system, so it limited my focus and all those job programs I’d been in didn’t even cross my mind.)

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      1. Replying to myself also to add more context:

        I’ve also seen a thing that’s a little different, this is all in the context of the adult DD system. Where those able to perform (at any level — whether being constantly goaded into performing by staff acting as handlers or whether able to achieve total physical independence that seems to stick for at least awhile, both can get this treatment) in independence theater are trotted out as shining examples of what can be achieved (no matter the cost to them, which can be dangerously or even life-threateningly high in some contexts), and those unable or unwilling are punished including in ways that can also be dangerous or life-threatening. Some people end up benefiting if the cost to learning to do certain crap isn’t too high (and some of them go on to become staff or sorta-staff-like “helping” other disabled people whether it’s help or not) but a lot of people on both ends of that suffer. Whether you can perform or not, in the adult DD system independence theater can be pretty dangerous.

        Especially because it’s more about theater than independence, and because it’s physical independence only — it actually almost always emphasizes a much more dangerous form of dependence than relying on other people for help doing tasks (which doesn’t have to be dangerous at all if done right), which can sometimes exist (in the form of a kind of… brainwashing sounds sometimes too strong for what I mean but I can’t find a better word, like thoughts and concepts that get put into your head without you fully knowing it and don’t go away and you didn’t consent to) even if you actually become physically independent enough to never need services again.

        I’ve run into disabled people who were part of such programs, and now force other disabled people through the same shit they went through thinking it’s helping them even when it’s hurting them, in a way just as patronizing if not more so as any nondisabled staff they were ‘trained’ by. So even though it undeniably helped them personally in some ways, sometimes they end up thinking it would help everyone and turn around and try to do the same crap to others. Not realizing it won’t help everyone and that they themselves might have been harmed (whether it was worth it or not — and for some it might be, that’s personal) in the process in ways they don’t understand. Or that they could do harm to others in their zeal to help everyone.

        But at any rate, with the way independence theater plays out in the adult DD system with task-learning type stuff, there’s almost always some high potential for harm occurring even in the best-case scenarios, and I haven’t seen any kind of disabled person with any reaction to it and any level of ability who can’t be harmed by it, it just plays out in different ways for different people.

        (And again, different people can end up on different ends of it at different points in time. I certainly have been on many ends of this — and it still varies by situation and context which end I end up on. But in the adult DD skill-learning context most of them suck even when people benefit. And people could benefit even more from real skills training done carefully and respectfully for people who want it, rather than dangerous pageantry that happens to teach some people skills while also putting them at risk.)

        Gah sorry for all the rambling sentences and everything I’m not at my best for spontaneous writing here and that tends to make my writing harder to read in one way or another.

        I just wrote this reply because I wanted to add even more detail. Because after thinking about what you said, I thought more about how in the adult DD life-skills-learning context I’ve seen a lot of different situations, could probably go on at great length about the similarities and differences but won’t (since already have and could go on forever). But none of them looked good even when some people were praised over others.

        And who gets praised over others seems different. People don’t get punished for doing something well. But we don’t always get punished for not doing it well either. You get punished more for total or near-total inability or unwillingness to participate in the process in a way that looks good for the staff. If you’re able to achieve total physical independence and learn these tasks forever, you’re praised to the high heavens. But you can get the same amount of praise — or more — in some contexts if you never learn any degree of physical independence and can’t even really do the task, but can be prodded into doing something that looks like ‘progress’ from wherever you were at and makes the staff look really really good.

        And I haven’t seen people punished for high performance in this context. But not necessarily for low performance either. It’s more for how good the overall process looks or can be made to look in public. If you utterly refuse and can’t be even made to look involuntarily as if you’re cooperating in some manner, that’s when you’ll get punishment if you do get punishment (you don’t always). And if you can’t do it and can’t look cooperative, same deal. What degree of “can’t” and “won’t” matters enough to change from praise to punishment varies depending on the situation. But it all revolves around what looks good rather than what is good. Good can come of it but it’s not the actual goal of any of this, the goal is performance.

        (And I say looks good in public, but I mean as opposed to is good in reality. By public I mean would look good in public — it doesn’t have to actually ever take place in public, and sometimes the “stage” is entirely for the benefit of the staff and agency and you never see the person in brochures or anything. It’s still the same thing. I’m just really struggling with some sorts of words tonight. Probably because I’m sick and sleep-deprived and hadn’t planned on writing about this at all, just saw my comments and wanted to add more detail to them.)

        Oh and just because I haven’t seen something doesn’t mean it might happen. People in these contexts may get punished for high performance at some times as well. I just haven’t seen it personally. I have seen it personally in the kinds of job programs it sounds like we were both in as youngsters though. Although I wasn’t personally one of the high performers there.

        I was kind of in a situation where I was set up to fail though — nobody I know of did well at the place I worked at because the standards were impossible and we weren’t expected to succeed. We were expected to anticipate the changing and conflicting whims of many managers who all wanted different things. Without actually being told what we were supposed to do except in the most vague ways that also changed and conflicted depending on the manager and the day and time and etc. Literally nobody I know of managed to work there successfully and I did extremely badly. One guy got so fed up he tried to destroy the calendar section — I didn’t do anything like that but I just could not do anything right despite giving it everything I had, and it seemed like everything I tried was the opposite of what they ended up wanting by the time I was done.

        So I got shunted into volunteer work very fast as a total failure at gainful employment. I did very well there but nobody gave a shit because it wasn’t a “real” job, it’s where they put everyone who did badly at everything else (they never put me in a paid job I could be good at, which at that time were MANY). Most people actually did extremely well there because there were a variety of tasks available for a wide range of skills, everyone was used to us, and the atmosphere was very laid-back and they’d basically help you figure out what things fit both your skills and your preferences. But it was a very specific place that had an agreement with our school and was practically across the street. Even some kids from there who weren’t in WorkAbility volunteered there.)

        Very different from a previous job program I was at at a residential facility where I made minimum wage part-time, performed well under difficult circumstances (reasonably heavy farm work in a very hot area while on meds that made me sun-sensitive, and ended up actually taking over jobs for kids who didn’t want to do them in addition — I actually really enjoy work of the right kind when I can do it, I’m just not remotely capable of gainful employment because too much crap going on with too many things that’d affect it, and especially too much physical crap affecting the stuff I used to be best at sustaining), and was not punished for performing well.

        But that’s the same place that paid us minimum wage to hide contraband before a state inspection after a kid died there, just before they were shut down, so… not saying that was a good program, but actually the job program before the kid died was the best part of the place and everyone to my knowledge both enjoyed it and benefited from it. And the place was a hellhole so that’s surprising.

        But at any rate, in those sorts of job programs I have seen exactly the kinds of thing you’re describing, even though I personally wasn’t one of the high performers who got punished, I did SEE that kind of crap going on around me. I would not be surprised if there’s some equivalent in adult DD programs with the skills training shit, I just haven’t personally seen it at all, i’ve seen a different basis for reward and punishment for the most part.

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