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 Self-advocacy

Explanations.

Believe it or not, this entire post was written before tonight’s events, where I stood up to someone demanding an explanation like this, for the first time. I have only finished a sentence that wasn’t finished, and added this paragraph, otherwise the post is unchanged. So it applies to today, but wasn’t written today or even with the expectation today would happen, so it’s weird. I might nor might not have the energy to write about today, I don’t know.

My memory is both shit and not shit.

Shit: I can’t bring up needed memories on demand.

Not shit: When memories happen for their own reasons, they are more accurate than usual.

So I say “My memory is shit” and “My memory is good” and both are true.

I can forget my back is broken. Or how to say exactly how it’s broken. (Once is a stable stress fracture which means kind of healed and kind of not in different ways, sometimes it’s called healed but it means something different than a normal healed broken bone. Once is a stress fracture that is not healed. First is T11. Second is T7, I think, maybe T8.) It’s easy to say “It’s broken twice” and that’s fine for a layperson but to a non-layperson that’s not specific enough. But I can’t always do specific.

Anyway. Recall is a problem.

Words are a problem in ways too complicated to explain right now.

In fact what I do want to explain in this post is why demanding explanations is so awful.

Today a physical therapist said a lot of things to me that were a very oversimplified view of things leading to a conclusion that was dangerous to me.

I told her I can’t possibly do a certain thing right now.

She wanted to know why not.

I tried over and over to explain and I kept stumbling over stuff.

It would have been really good if she’d tried to help me clarify what I meant.

Instead she treated me like I didn’t know what I meant, unless I explained.

So I kept trying to explain and failing.

Hours later, like over 6 hours later, I started beginning to figure out parts of things I could’ve said.

They were “obvious” things.

Things anyone should’ve remembered. Except I can’t.

I couldn’t.

I tried to contact my cognitive interpreter, saying she could explain.

She said she didn’t need to speak to my cognitive interpreter, and she and someone else talked to me in such a way where I couldn’t shove a phone call in edgewise.

And so no explanation happened.

What pisses me off about this entire situation is one I keep running into lately. It’s not any specific person, it’s lots of people.

It’s the expectation that if you can’t explain why you have trouble doing something, you have no right to assert you can’t do it.

And she is the person who told me to begin with.

She is the one who told me that I am going to have to be the person who figures out what I can and can’t do, and where to draw the line, and that only I can feel that in my own body.

But apparently that only counts sometimes.

And I don’t mind that she asked, I just mind what happened after, and how far it went into the world of making me explain things I can’t explain, the pressure she put on me.

And also the fact that this isn’t one time one person, it’s a pattern.

What did I remember and what did I forget?

I tried to tell her the effect of my back on my abilities. I did not do this well, especially with the huge improvements in some of my back-related skills that are the most spectacular to other people.

I neglected to tell her the effect of a constantly leaking tube on my abilities.

I tried to tell her my fears about services.

I neglected to tell her anything about my tubes at all. I can’t get out of here safely until my tubes are working better. I can’t function until my tubes are working better. And nobody on the planet can take care of these tubes properly as they are, unless the hospital magically grows better staffing. Which, despite the nurse’s strike and everything last year (which I was 1000% behind, btw), they just plain don’t have.

So what’s pissing me off:

STOP REQUIRING EXPLANATIONS, PPL.

If I say I can’t do something, just believe me.

DON’T REQUIRE THE EXPLANATION.

Don’t treat me like I have to be able to put things into just the right words, just the ones you can understand, in order to be worthy of being treated seriously about whatever I’m saying.

I’m sick of this.

Now I remember something that happened before I came into the hospital.

Quite awhile before.

Someone was asking me questions about back when I got my feeding tube.

Someone with a lot of authority over my life. Someone whose opinion, like the opinion of a physical therapist, could actually have a huge impact on my future and my services and a lot of other things. Not, in other words, someone I can afford to blow off.

They were asking questions about one of the most traumatic things that’s ever happened to me.

And then the dreaded thing happened.

They said, “But wait, that doesn’t make sense, why would a doctor say that to you?”

And first, how the ever-loving fuck should I even know the answer to that question?

Like — I can’t read minds. I don’t to this day know what the doctor was thinking.

But okay, I’m actually technically a researcher into medical discrimination against disabled people. Like, published and everything. I know some things. And in addition to formal research, I’ve done a lot of informal research into the opinions of medical professionals about the quality of life of disabled and nondisabled people and its impact on medical decisions. Including life and death ones like whether to insert a feeding tube.

So I’m actually — by the outside world’s standards — technically overqualified to answer that question.

And I’m conditioned to answer questions without even considering that I can say no.

So I dug into what I could dig into from that stuff.

And I gave the person some kind of answer about why a medical professional might be biased, what biases are common, and how those biases may affect medical decisions about people with developmental disabilities and people with feeding tubes.

Here’s the thing:

I SHOULD NOT HAVE TO KNOW ALL THAT TO HAVE A PERSON WITH IMMENSE POWER OVER ME BELIEVE A STORY THAT HAPPENED.

Especially since if they really want to go around doubting what I said, there are other ways of checking up on it. In the case of this particular doctor, he said this thing multiple times with multiple people in the room. Some of those people worked at the same agency as this person. Some of them were known to them in other ways where they could’ve contacted them. I would’ve gladly given them ways to do that if they really wanted to check up on this. Basically there were tons of people who heard this conversationA, knowing why wasn’t necessary to proving that the conversation happened.

But all this is overkill because.

This was all over one sentence.

And there’s something truly invasive or something about “I don’t instantly know why something happened, so if you don’t explain it to me, rapidly, then I won’t believe the person who is telling me it happened.”

Why is it my responsibility to explain or justify what a doctor said to me?

Nobody has to believe me, of course.

But I have a real problem with being held to a high standard of proof, in order to just have a fucking conversation.

Like, I don’t think I grill people that way.

It runs like: “Explain everything to me right now in precisely the way I want to understand it. Provide all the information I want in order to be satisfied that this conversation can even continue. And nothing you say will satisfy me anyway because I’m not actually asking for an explanation I’m asking you to wear yourself out saying a lot of words that I’m about to shoot down and demand further explanations for anyway.”

It’s not okay.

1 No, I don’t remember which doctor it was, nor does it matter for anything related to either the conversation then or this discussion now — I was just saying the doctor had said something and did not expect the third degree in the middle of telling a story where it was kind of a tangent anyway.

Posted in language, Weave of Traditions

Without explanation.

A tightly woven grey fabrc with the following quote written over it: "The tight weave of traditions that makes a comfortable hamock for some just as surely maks a noose that strangles others." -Anneli Rufus, Party of One: The Loners' Manifesto
A tightly woven grey fabrc with the following quote written over it: “The tight weave of traditions that makes a comfortable hamock for some just as surely maks a noose that strangles others.” -Anneli Rufus, Party of One: The Loners’ Manifesto

This post is part of the Weave of Tradition series.  Please read the introductory post to that series to understand more about this post’s intent and context.  This series deals with traditions, language, and symbols that mean very different things to different people.

This happened some time ago.  I’ve only now been able to respond at all.

Someone requested of me that I stop using the word homophobia and transphobia and instead use the words heterosexism and cissexism.

The person was polite in their request.

They explained, clearly and in detail, why they were making such a request.  I assume they figured I didn’t know.  (I knew.  In more detail than they explained, in fact.)

I didn’t answer.

I couldn’t answer.

I couldn’t explain.

Still can’t.

But I can say this:

NO.

And I realize it’s important for me to say no.

Because you’re penalized for your inability to explain.

So too often if I can’t explain, I just don’t say anything.

I can’t justify myself.  Oh — I know my justification.  But I don’t know the words, I don’t know how to say it.  Especially not in a way that’d make sense to anyone.

But no, I both won’t and can’t — both won’t and can’t — use those words instead.

And I shouldn’t have to.

And I shouldn’t have to have an explanation or justification.  It’s dangerous to leave people without a means to describe our own oppression, no matter if that’s your intent or not.  (And I know it was not this person’s intent.  But that would be the result.)

So all I can say:

NO.