The Assumption of Autonomy

TW: medical things requiring a gynaecologist, medical treatment and disability, disability discrimination

 

I’mma say this once more, and only once. Being disabled does not and never should come with the assumption that I do not have bodily autonomy or the ability to make decisions about my body. It also should not come with the assumption that saying stupid stuff should be taken as medical advice, because really, drink more water! eat more food! would have stopped my migraines over a decade ago if it was going to work, wouldn’t you think?

 

What I dislike most about my situation is that I have to fight for every ounce of respect I get. I don’t talk. I am perfectly capable of expressing my thoughts and wishes by typing and, increasingly, by signing. I still have enough intelligence to understand what’s going on around me, and, increasingly, to explain it to others. Just the other day I was explaining union organising theory because certain people couldn’t understand how requiring people to take off their bras to go through security could be considered the least objectionable option. (This is a thing, btw.)

 

So I haven’t slept or eaten today because I had to go to the gynaecologist. Again. And I was told, again, that because I can’t talk, I can’t have the hysterectomy I have been asking for for years, since before I couldn’t talk, since before everything. And you know, it’s risky and I might have pain after and because I already have pain it’s too hard! (Never mind that by already having dealt with chronic pain, I have support already in place and am equipped to deal with it.)

Continue reading The Assumption of Autonomy

I finished P5! It’s over!

I finished Persona 5, thank goodness. I like RPGs, but not ones that go for so long and have balance issues. (By which I mean, by the time I was reaching the final dungeons, I already had those Personas and was not gaining experience due to being so far above the enemy levels just by doing the story dungeons and the social link requests. Given that there’s so much to do, that basic level of gameplay shouldn’t be making the entire party OP enough to one-hit kill physical resistant enemies with melee attacks.)

 

More spoilers below the cut, finishing off my thoughts on Futaba.

Continue reading I finished P5! It’s over!

Blah.

If you look back, you might see a few posts about the time I called the police and got screamed at because some guy was randomly scraping paint off the front of my house, and the police said it was strata so my male neighbour knowing about it was enough, even though I had already spoken to my landlord/parents and strata had been unable to confirm this was a thing that was meant to happen. Yeah.

Continue reading Blah.

Everything Wrong With Persona 5 – so far…

The amount of Gladio hate just builds and it makes my life. Though explaining to white male gamers that psychological conditions are not a sign of weakness of character is an uphill battle, the discovery that the stairs in Altissia have white lines painted on the edges (an aid for people with low vision, so they know where the steps are!) makes my argument that certain other low vision accoutrements aren’t up to scratch a tiny bit more grounded, and I’m happy in my spot on the Descartes graph.

 

But while I can still go on about FFXV (I got the Afrosword before my brother, and I acquired the Black Hood without using a glitch, unlike my brother, so I am very happy), I just went back to Persona 5 after taking a break after being spoiled and having some ragey moments.

 

I don’t have a good history with Persona, and quite frankly this one is more upsetting than the last. Persona 4 Golden was generally upsetting due to its weird fixation on a flawed perception of sexuality and stereotypes, but certain aspects of Persona 5 are quite personally upsetting.

Spoilers below the jump:

Continue reading Everything Wrong With Persona 5 – so far…

Persona

So a thing just happened, and it happened after a bad thing happened and no amount of ‘but nothing happened really so you’re fine’ will turn off the flight response from running into a former coworker in the shops, psychobabble be damned.

 

So I was stressed, obviously, and came straight home, and then I got distracted running errands for my brother, and I sat for a minute to have my meds and try to stave off the migraine that’s been ramping up for a massive peak (hello, Victoria!) and the doorbell rang. I forget why I put the batteries back in the thing, because it’s loud and I hate it and it hurts.

So I went to the door, stopping to pick up my phone to type on and get the keys. It’s about 20 steps. I had made it halfway before it rang again, because the concept of distance between a person and their front door requiring time to traverse is apparently beyond people (it’s a thing – one time I was right by the door and by the time I opened it a delivery person had made it back to the van, on the road, because everyone also walks faster than me, especially when my knee is black with bruising).

‘Just wanted to let you know the light is on in your garage!’

Well, yes, otherwise it’s pitch black and even in the middle of a summer day with no clouds there is no seeing to find the keyhole on the car door.

I signed that it was fine.

‘And the door is open!’

Yes, that is also true, because it’s stuck. Because that’s what happens when there’s wind and then dirt blocks the rails. And it’s also not your business.

I signed that it was fine.

‘But the light is on and the door is open!’

Yes. I know. I am signing to you. I have my phone to type to you but you keep talking and I am not typing because I cannot make you understand that I am typing to you, so I am signing, and you still don’t get it.

‘The light is on! Do you want me to come in and turn it off? The door is open! You should know!’

I do know. And if I didn’t, you just told me multiple times. This is why I am signing to you again that I can’t talk. And you’re still talking over me signing, so I am giving you the finger and waving to you so that. you. leave. me. alone. because. this. is. my. safe. place. and. you. are. interfering. and. I. want. you. to. go.

 

This is a trend I am seeing. I don’t talk, therefore people assume that I’m incapable of basic stuff. Like the other day, I was directed to wait in the self-checkout area for the attendant to return with my tokens (the superhero ones for my nephew) and a lady came up behind me and asked if I was done and since she was behind me and therefore I didn’t know she was talking to me or what she was saying, she asked if I was okay. And then told me not to move so she could get me help. I didn’t look to see what happened once the attendant came back and I collected my tokens and left.

Like the time the Jehovah’s Witnesses were at the door and I was signing to them and they wanted to come in and help around the house. They even came back a few days later to check on me, an effort which was averted when I saw them dumping rubbish in my bin and I just happened to bump my car horn and scared them off.

Like the time I was in self checkout at another store and the attendant took over for me and somehow managed to miss half my items and then left it on the ‘please insert card’ screen and took off. I was then unable to finish checkout, and the people next to me started trying to touch me, and I tried to defend myself and that was when I discovered they were husband and wife, because the husband started screaming at me for trying to hit his wife. (I did complain about that. Nothing happened, obviously.) Or the time in self checkout (again, seems they’re not very self-checkout after all) when the scanner was broken and instead of allowing me to move to a working one, the attendant reached over me from behind and started typing on the screen, while yelling at me that I had to put the bag down for it to register the weight, all while ignoring that the scanner was not picking up items in the first place. She even came back to scream at me again because I didn’t scan an item on the broken scanner while she could see that I tried to scan it and it didn’t register, and started taking items out of my bag. I tried to complain, but she came and stood over me and then a huge very male (and acknowledged as male) person got involved and everyone started talking over my head and they threw my items on the ground because I tried to explain that I don’t like people touching my things. (I also complained. Also nothing happened.)

 

Like the time I was approached six times in ten minutes by staff members at another store – because they couldn’t apparently work out the first five times that I didn’t need help (it was a hardware store – this behaviour, for future reference, is miraculously averted by wearing sports guernseys, optimally bearing the name of the store as a sponsor) one person chased me across the store and started patting my back while I was in line at the checkout while asking if I needed help. Really. I did complain, they said sorry but their staff are trained to ask people if they need help. I pointed out that it is generally much preferable to not come up behind people and touch them. They took it under advisement.

 

Like all the times people started writing to me despite having to have known I could understand them, or changed the way they talk to use small words spoken at high volume at slow pace. Like the times people pretended they didn’t know what I was signing (‘no’ and ‘vomit’ are pretty obvious, right?) in order to yell at me. Like the time I was threatened with the police for not talking, or the time someone offered to send a doctor to my house (See: Bubble) instead.

 

Like the times I was denied medical treatment “because you can’t talk so I can’t have a conversation with you”. (Seriously! Typing isn’t a thing. Sign isn’t a thing. Translators aren’t a thing (oh wait, we can’t have translators because of privacy, which is also a thing)).

 

Like all the times I said I was fine and people didn’t believe me, or started telling me I would be fine if I ate more (but didn’t pee) or drank more water (and rolled around like Violet Beauregarde from the bloating) or took magnesium or zinc or just waited it out (HAHAHAHAHAHAHA).

 

Like the time I got desperate and reached out to a wellbeing service only for them to start arranging appointments for me with doctors I said I could not get to, and to find out that they had made these arrangements while under the assumption that my not being able to talk meant they would not talk to me. I was meant to be grateful that they breached my privacy like this and I got told off for daring suggest that they were not absolutely correct in their version of my disability (and then they tried to pawn me off on a generic helpline).

 

I am no less of a person because I can’t talk. I refuse to be treated as anything less. Asking to be treated the same as anyone else is a thing I shouldn’t have to do.

 

And yes, I know the light is on in my garage. I knew it before you decided your need to inform me of the status of my house was more important than preventing a pain peak, and I knew it when you told me the first time.

 

And I strongly resent the implication that because I cannot talk that I also am incapable of flipping a light switch. Seriously. ‘Do you want me to come in and turn it off for you?’ No. I want you to leave me alone so I can finish cleaning the door so it goes down.

 

And I hope you were watching while I cleaned it, getting metho fumes the day after being assaulted by shisha fumes (seriously, no smoking zone but shisha is okay?) and cleaning out enough dirt to fill a jar (no heart included). And running the door up and down. And climbing up a ladder to put silicon on the tracks. And having to switch hands because my right arm still thinks it’s dislocated even though I did put it back in.

 

 

Seriously.

 

Do I get my bubble back now? Except I’m reliant on delivery food right now, because I can’t lift a saucepan if it has anything in it, and they insist on coming up to an hour early (with cold food, wtf? And who puts the mushrooms on top of the cheese? It’s pizza. Cheese goes on last, even when it’s a vegan coconut-based substitute. Really. It works the same even while it tastes more like creamy lettuce). And the painters are coming next week (yes, which means the paint has been stripped off for two months in which there have been storms and this has caused damage, thanks! really helpful!) And I’m still so tired from having my brother visiting and finding out that yes, I really can’t miss my meds if I’m doing anything other than lying out flat on the floor.

 

I am eternally grateful for this one pharmacist who has told all his staff members just to give me my meds without going through him. They see me coming and have it ready. But they still ask if that’s what I’m there for, and treat me like a person. I lost my note today and that they still gave it to me made me cry.

“means well” means nothing

 

You know how you point out to someone, or their superior, that what they’re doing is hurtful to you? And they say “well I/they meant well” as if that’s the end of it? And you feel that little curl of rage?

 

I tried to go back to dance. I found a small school that was meant to be “a great community” and had rave reviews from people who said they felt accepted and like family. I wrote to them to say I have a disability, can I chat to someone to explain it and see if I fit? I heard nothing. I tried again. Nothing. I signed up for a trial class.

“Oh, you’re the one who emailed me! I starred it, and I meant to get back, because I thought ‘I really want this girl here!’ but I was so busy!” Strike one. It also involved hugging. Definitely strike one.

We went around in a circle and said our names. I signed, and people murmured. “ohhhh that’s so pretty!” Uh. What?

 

So then my (former) psychiatrist found out and made it a part of my therapy, despite me explaining carefully as best I could how I had this thing now that was mine – not therapy, not paid for and monitored by my mum, but a thing I wanted to do that I was doing that I could look forward to because it was mine. That was where I found the spoons to finally break ties with him, because spending one’s entire life as ‘treatment’ is exhausting and fruitless.

 

I kept going with it, because I’d been cornered at the end of the trial lesson and interrogated on whether I was coming back and only allowed to leave once I’d agreed, so I’d paid for the term anyway.

Continue reading “means well” means nothing

it never ends

TW: privacy, dentists, grief, references to inter-family abuse

 

So, I managed to get home for my grandmother’s funeral after all. This came about because, by virtue of not driving the six hours each way to collect me, my mother attended the meeting with the funeral director and took the responsibility of organising the priest and so on. (It was also necessary that she attend since she’s the one who has the lease on the grave, but such practicalities don’t actually rate as necessary when one isn’t thinking rationally.) A few days later, she offered to pay for a flight down, and then couldn’t understand why it didn’t cost several thousand dollars.

Then she admitted that she hadn’t wanted me to come because she thought the funeral would be too short to be worth it and she didn’t want me to remember it badly. (Or something, I mean, seriously?), and then that she should have handled arranging things better rather than letting everyone else take over, after it came out that other people were upset about it too, but too afraid to speak up, because about the only thing that part of my family doesn’t do to each other is resort to physical violence.

Continue reading it never ends