Posted in Self-advocacy

Once I’ve identified something I won’t do, stop trying to get me to do it.

I got into the hospital in part by doing what everyone else told me to do. I got stress fractures in my spine. They got worse. I got all of this by doing physical work other people thought was important to proving my motivation or demonstrating independence. They took advantage of my pride in my work and other things to make me easier to persuade. But the end result was I broke my back twice.

I made a promise to myself I wouldn’t do that again. I wouldn’t listen to other people’s ideas of what I should do if it conflicted with what my body could tolerate. It doesn’t matter who they are or what their motivations.

If you can’t tell by now that I have a ton of motivation, nothing I say or do will convince you.

I don’t have to explain. Because I can’t always explain. And because most of the time people are looking less for explanations and more for things to argue with. Again if you don’t believe me by now that I know my limits, nothing I do will convince you.

Also it’s pretty condescending for all these other people to decide for me what I ought to be doing. There’s plenty I want to learn. So far, I’ve had to fight to get taught any of it. But when others decide I need to learn something, I’d better. This shows no respect for my choices and my body.

I’ve been living in this body for a long time. I have:

  • Severe osteoporosis
  • Stress fractures of vertebrae
  • Healed hip stress fracture
  • Congenital myasthenic syndrome
  • Autistic catatonia
  • Severe adrenal insufficiency
  • Gastroparesis
  • Feeding tubes
  • Many other things

It’s difficult to understand these things and more put together at the best of times. I may not be a doctor or nurse but I know when something is taxing too many abilities, when something hurts, when something seems wrong or dangerous. I’ve learned most of it the hard way. I have an extreme tendency towards overdoing things and to push me harder in that direction can put my health and life in danger. Yes, even if what you’re asking me to do feels minor. Little things add up, and what looks little to you may be huge to me for reasons you’ve never even considered.

If everything I’ve said and done doesn’t convince you I am motivated and know my body, nothing will. I have nothing more to prove. I’m not going to do something just because someone else has decided I ought to. It doesn’t matter who. It doesn’t matter if they have good motivations. Enough is enough. It’s disrespectful and dangerous to continue to tell me what I ought to do in order to fit your definition of independent or ready to go home or willing to learn.

I’m done. You either take me as I am, or you don’t. You either trust my ability as a fellow human being to make my own decisions, or you don’t. You either respect me and my decisions, or you don’t. If everything I’ve done by now doesn’t convince you, nothing I say or do will. So let me learn at my own pace the skills I have decided I need, listen to me rather than trying to find new ways to persuade me why I ought to do as you want, and trust that I have valid reasons for my decisions even if they aren’t the same decisions you would make. Don’t make me tell you this conversation is over, because I will if I have to.

Listening to everyone else over the warnings of my own body is what got me into the hospital. I broke two vertebrae and continued to do physical labor with an unhealed fracture. I went out and did errands with a bad case of pneumonia until I almost passed out. I let people treat me like they always knew better. I ain’t doin’ that again.

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…