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…