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 Being human, Problems and solutions

Dreams of Robot Kittens

I’m watching a documentary about robots.

And it reminded me of a dream I had a long time ago.

Not a particularly important dream, just a cool dream.

In the dream, I was in a city.  Not sure what city, but a large city.  Kind of sprawling like San Jose, California, where I grew up.  But definitely not San Jose or any other city I’ve been to in real life.

Anyway, in this city, there were robot kittens.

They did not look like this robot cat, which I had as a kid:

petstercat
This is nothing at all like the robot kittens in the dream.  This is an eighties toy that moved, purred, or meowed if you clapped in different patterns.  One of the motors on mine didn’t work so it mostly went around in circles.  I guess I had a disabled robot cat.  I was quite fond of it.

Anyway, the kittens in the dream:  They were tiny.  They were clearly robots, they made no attempt at being realistic.  So they were usually shiny, plastic, and a combination of white and some other color.  (Sometimes a color a cat would be, sometimes something like blue or purple.)  They were also completely adorable.

They didn’t look quite like this, but these modern toys are much closer to what was in the dream than my Petster:

A pink and white plastic robot kitten.
Pink and white plastic robot kitten. Doesn’t look quite like what was in the dream, but much closer tan my old Petster.

Anyway, these robot kittens made their way around the city without really being noticed by a lot of people.  People expected them and got out of their way, but they did a pretty good job of staying out of poeple’s way.

Except the person they were going to.

Because these were delivery kittens.

And each kitten delivered a small amount of food to someone who needed food right then.

And it could be that you had no other source of food.

But it could also just be that you wanted convenient food delivered to you quickly.

Or that you couldn’t be bothered to cook right then.

Or that you were disabled and found cooking and meal planning and all that too difficult.

The kitten delivery service didn’t care why you needed food, they’d just give you food.

The kitten would find you, open up a hatch on its side, and there would be your food.

And then once the kitten was assured you’d gotten your food, it would go on its way back to wherever the delivery kittens go when they’re not out delivering food.

See, in this city, and presumably in the surrounding culture, food was considered a human right.  Everyone took this as a given.  That’s one reason they didn’t differentiate between why a person wanted the kitten delivery service.  The kitten delivery service was completely subsidized and it was anyone’s right to use it for any reason at any time.

Imagine that.  Food being considered a human right.  And being delivered discreetly to anyone who wants it for any reason, by a small army of robotic delivery-kittens.

Holy crap, the world we live in…