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 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.