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

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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…

I Can’t Even

TW: gender dysphoria, anxiety, ableism, discrimination, mentions of rape/pregnancy, discussion of reproductive organ stuff

 

I just got home from the gynaecologist. I didn’t make it home before spouting into big ugly tears. I didn’t even make it out of the office, though I fought valiantly to keep them just in my eyes.

 

Let’s recap the situation:

I am genderfluid (they/them), asexual, and very not interested in having children. I very dearly above pretty much everything else in life, including singing with Sir Russell and not having to ever talk to my mother again, want a hysterectomy-oophorectomy.

Continue reading I Can’t Even

The Little Things

TW: discussion of weight/perception of weight (including numbers), ableism, discrimination

 

This post is going to be a mess because I have a lot to be annoyed about today.

 

 

 

I have a new pet peeve – it’s not a new thing that annoys me, but it escalated to an official peeve today.

Continue reading The Little Things

Hot Girl Privilege

TW: ableism, discrimination, discussion of medication and being triggered

 

This is what my pain medication situation looks like right now:

January: Pain specialist does a superficial examination (which triggers me) and says he’ll give my psychiatrist a script to give to me, and will see me again after that so he can see how I’m going with it.

Yesterday: Psychiatrist refused to give me a prescription because he didn’t think it was appropriate, so I have to wait a month to see the pain specialist again for another examination.

 

I decided to experiment. Since I’m stuck with my current medication for another month and instead of ‘try not to take it’ I was told ‘do not change anything’, and I had run out in anticipation of having a prescription, I needed to get some more.

This is what happened last time I went to the late night chemist.

Today it was later, I was presenting feminine (because lazy-default is a maxi dress, corset and jacket with heels and my hair in a single or double braid), and the assistant was masculine-presenting.

I had no trouble.

This could also be attributed to the fact that my eyes look like my makeup ran to panda eyes and my right leg buckles every time I put weight on it, like, when, you know, walking.

But the people before me was getting different brand same thing, and I caught the tail end of the lecture, and they had to disclose their appointment schedule, treatment plan, and symptoms.

I just had to go ‘no’ to the ‘are you on any other medication? do you have stomach trouble?’ routine.

I wonder, I really do. Last time I was presenting more andro, and there were female-presenting staff. The pharmacy where I go every Friday and if I get my days mixed up and run out? Is run by a man. He only asks to make sure he gives me the right brand.

How much of my luck so far has been because I’m apparently quite attractive when I present female? Is it as much as the ‘female under 30 must have psychosomatic pain’ preconception?

 

I don’t know. I don’t know how to test for this. It just happens too often to be entirely disregarded.

 

 

A disadvantage of this, however, is that apparently specialists won’t be alone in a room with me. The pain specialist, despite me saying no, I did not want this, brought in one of the admin people to stand in a place i couldn’t see while he made me bend and told me to take off my shoes “so I could balance better” (nvm that i fall over without them). It is worth noting, too, that the psychiatrist specifically asked me if this was okay to put in the referral and I specifically said no and stated that it was traumatising for me.

The psychiatrist asked me how the appointment went, and I stated this and that it was against my wishes. The fact that he deliberately ignored me telling him I did not want a chaperone, and that the psychiatrist specifically included ‘do not have a chaperone’ in the referral is suddenly forgotten, and the fact that I’ve been having nightmares for the last three weeks directly because of this is totally dismissed. If I do not go back to this pain specialist, I do not get better meds, and I don’t get another referral. Apparently this is because the last specialist I went to was a bitch who pulled my hair and also refused to respect me saying ‘no’ to her dislocating my shoulder because she decided I needed help to move around, and the psychiatrist thinks she’s a nice person so therefore I must be making it up, so I now have to have someone watch me go through this so that I can’t make more things up.  (This is what he said. I was pissed.)

(Who on earth thinks having a random stranger come and supervise while a doctor makes you run through positions and pushes you around isn’t humiliating and capable of being a trigger for someone? I don’t get it. My plan is, if he tries again, to walk out. The thought of it getting to that point? Well, the nightmares aren’t going to stop, are they? And I thought I wasn’t sleeping properly before.)

FFXV and Disability… maybe

TW: visible vs invisible illness, privilege
SPOILERS for Final Fantasy XV

You might remember a while ago, before the computer incident, I said I wanted to talk about how Final Fantasy XV treated disability.

I (apparently stupidly) mentioned this a few other places, and showed a few people a rough draft of the key points I wanted to cover.

This draft was rough, really. It was a paragraph for each point; there were meant to be three, but I described point three under point two; I didn’t go and play the game again, check the videos I had saved of my playthrough, It was <i> a draft</i>.

This revealed a few points about how gamers see disability and games that felt, to me, more important than pointing out that the game treats invisible disabilities much more cavalierly than visible ones. (Sure, now that the dust has settled, there are a lot of people who feel like it was ‘unfair’ and ‘could have been better explained’. That wasn’t my point. My point was that the game showed this as okay, and as an AAA title with a worldwide audience, which took into account significant player feedback during development, it should have made an effort to portray the invisible disability just as compassionately as the visible one. (On the same place where this discussion took place, there were arguments about Scarlett Johanssen’s casting in Ghost in the Shell, Riverdale erasing asexuality, and Black visibility in American media. I would have thought I wouldn’t have to spell this out.)

My conclusion out of all this was that it was useless trying to continue talking there, because the counter arguments were “but they are privileged and in character so it’s okay” and “but you need a doctor to diagnose mental illness because it’s really hard so we shouldn’t expect people to know anything is wrong” and “we have more information than they do so we can’t expect too much from them”. I didn’t have it in me to try to explain that in-universe privilege doesn’t excuse anyone not noticing their best friend is in crisis, or that even doctors don’t always understand or correctly diagnose/treat mental illness, or dismiss it completely (as happens in-game). It shouldn’t be shown as okay or in-character for someone living in close quarters with someone else to bully and put down that person explicitly for having a crisis, while being solicitous of someone with a visible disability. This normalises treating mental illness as an other, as a thing that people can’t see or understand, and that filters onwards.

“But they’re young and don’t have experience with it, so they don’t know what to do,” was another thing. Nobody ever asked, either.

 

I didn’t want to keep on trying to explain how in-game signals and the very change in personality they pointed out were exactly what should have clued them in to Something Being Wrong, and that a character not knowing what to do shouldn’t mean that ignoring the entire thing was okay. I was told I was disregarding character in favour of wanting a “Correct” approach, like a “How To Deal With Disability Handbook checklist”.

 

And then, when I left the conversation, the person who silenced me was told that they won.

 

I don’t know how to explain that none of this is okay. I don’t know how to say that dismissing something because you can’t put a name on something isn’t okay. I don’t know how to say that lowering expectations of portrayals of disability because illness is hard is not okay. Apparently, I’m not able to do that. But that was their argument, which they supposedly won with, as if it was a competition, as if the whole aim was to shut me down.

“You need a doctor to diagnose mental illness because it can be so many things and it’s really hard, so we can’t expect normal people to notice what up and not tell people off for having something wrong,” is not okay as an argument or a position in real life. If we switched ‘mental illness’ there for ‘physical injury’, it would sound stupid.

“You need a doctor to tell you your leg is broken because it could be so many things and it’s really hard so we can’t expect a normal person to notice that you can’t walk and not tell you off for not walking. ” Sure. A normal person couldn’t easily diagnose or treat a compound tibial fracture, but it’s pretty likely that your normal person is going to be able to tell that you can’t take weight on that leg (even if it appears totally normal, isn’t swelling, doesn’t have a bone sticking out or foot pointed the wrong way) and that you’re in pain, and is socially expected to help to the best of their ability – calling an ambulance, bringing water, blanket, making the area safe. If someone with medical training is present, most law areas have provisions allowing them to provide first aid with the expectation of not being held liable for doing so.

“You need a doctor to tell you have acute adjustment disorder with anxiety and depressive mood because it could be so many things and it’s really hard so we can’t expect a normal person to notice that suddenly you’re withdrawing from your friends, having emotional outbursts, and having trouble coping with your job.” Sure. A normal person wouldn’t even know the term, but they could pretty easily tell that your entire personality changed, or that you’re not doing things you used to,  or that something that society deems easy is suddenly really hard and making you cry. They can check on you more often, ask what you need, offer you time off, call an ambulance (which can be humiliating, so I recommend only doing this if there’s actual, you know, risk in play, not just someone crying in a corner for a few seconds; use discretion and judgment), offer to include you in a social thing and not tell you off if you don’t participate at a certain level. The point here, is that even though you can’t <i>see</i> the injury because it’s inside, you can see the <i>effects</i> of it. You can see that frequent panic attacks may not allow someone to work full time.

Except, when someone can’t do the thing society expects that you should, and you’re not visibly unable to do it, then society puts you on the outside. You have to fight to get the same treatment as someone with a visible injury. In many cases, even people with a visible injury and a proper name for it and an army of doctors who agree have to fight for things like compensation, welfare, and/or accommodations. Normalising that because it’s something we can’t see and diagnose, treating it differently to a visible illness is okay, IS NOT OKAY.

 

I will now refer specifically to the in-game situation, so if you haven’t played and don’t want to be spoiled, thank you for reading and I hope I made sense.

Continue reading FFXV and Disability… maybe

Pharmacist woes, again

TW: discussion of medical examinations

So, today I saw the pain specialist, at long last. (Recap: I was meant to be referred in 2015, which didn’t happen, and then I was referred to one that was too far away for me to get to after I said I wasn’t going and wanted to go to the one in the same hospital where my psychiatrist is for reasons of being able to get there, and finally that happened and then I had to wait and yeah.)

 

Nothing happened. He examined me with my corset on, so obviously, he thinks I’m able to stand straight and all, what with, you know, 22 spiral steel bones holding me up by the grace of a really long shoelace. (I specifically asked the psychiatrist to tell him no other people present for the exam, too, and he just had to bring in one of the reception ladies to stand and stare at me while I was put through positions. I don’t think people realise that’s more mentally destabilising than just getting the exam over with.) He didn’t explain anything that he was doing either, which I hate because it feels like being put on display, and I’m so done with being the for-show-sub.

 

So on the way home, I had to get more pain meds, because nothing happened. He has to think, you see, to make sure he doesn’t give me anything that will have more chance of killing me than what I’m on. (Bear in mind, the only restrictions on what I am on right now are that it’s an S3-pharmacist only medicine, so it can’t be sold in supermarkets, and it can only be sold in packets less than a 5-day recommended dose. That’s it. All the rest of it is just pharmacists making things up and people being paranoid because a super-tiny percentage of people who put up with the dehumanising rigmarole and purchase it legally may end up addicted. Studies put this at 3% of users, with 30% becoming physically dependent, which is not addicted. Addiction is when use of it impacts the ability to live a normal life, such as not buying food to afford it or stealing money to get it, and it’s often characterised with increasing use, hence the fear that it is a gateway drug. Physical dependence is when quality of life is compromised without it because the body needs the effect of the medication, like how people who are on blood thinners or heart medication have to taper off even when switching brands, so that the things those drugs are meant to control don’t get out of control.)

 

It’s been a while since I have had to speak with a pharmacist to get them. It’s also been a while since I’ve had access to my printer, since I’ve been in too much pain to reliably trust myself to set up my new computer, so my note looks a bit old.

So today the assistant takes off to the back to ‘run it past the pharmacist’ and comes back a few minutes later, hands my my note, and someone has written the date on the back.

You know, rather than asking me anything so I could say ‘I just came from the pain specialist and I have to stay on this until he confers with my other doctors to decide what to give me’, they just decided, on their own, to write on my property, so they could track my purchase habits (not my usage), without signing up for MedsASSIST and thus ensuring I wouldn’t go there (because MedsASSIST is a huge violation of privacy and now entirely pointless, since my medication will go prescription-only next year. Apparently the government thinks a year is enough for everyone to get through to the proper specialists and get a diagnosis and get functional. I’ve been unable to work for four years and I’m only just now breaking through through sheer refusal to accept anything less than compassionate, informed treatment.) I don’t actually think I was meant to notice. It was on the back, in tiny writing, in the corner.

 

But I don’t get this thing at all. I mean, sure, yeah, I complained the time a pharmacist called me an addict to my face because people with migraines can’t have excruciating, sleep-stealing back pain. I think that was justified, because it wasn’t compassionate, and the pharmacist missed a huge opportunity to actually try to find out whether there was something better or make sure I was aware of the risks etc. (I got lectured on those again today. Yes. I know ibuprofen is bad. Paracetamol is worse for me. Yes, I know codeine sucks at relieving the pain I have. I haven’t been offered or able to access anything else.) Today the pharmacist wouldn’t even talk to me. The only contact with a pharmacist I have had at that pharmacy at all in the last six months is one time he came out and asked how many I was taking, and when I said he told me I should tell my doctor. I wondered what he thought I’d been doing, over and over and over again. And again. “Just eat more!” Except eating hurts, I’m not hungry, and now swallowing hurts because something in my neck is swelling like a big stupid grape. I have had pharmacists yell at me from behind the back counter where, of course, I can’t type to them. And they thought having a system of tracking medication would work? Why? Because it meant they didn’t have to talk to people. It’s the only conclusion I can draw. Pharmacists do not want to talk to me. At all. But without talking to me, they can’t do the thing. They won’t let me go in and buy what I need to survive until a doctor listens and lets me say all the things and finds the magical right solution, but they won’t talk to me to find out whether there’s anything better that they will give me without less drama, they won’t listen if I do get the chance to try to explain or ask. (I remember one time I went in and asked if there was anything else I could take, and we went around in circles for half an hour ‘I can’t give you codeine’ vs ‘I know that because I am asking for something that isn’t codeine’.)

 

And then there was the time where they wouldn’t give me my meds because they didn’t know if I wanted the generic or not because questions end with a question mark.

 

I am likely to get fibro meds and I have to keep telling myself it’s just a few more weeks of being treated like a subhuman for having pain.

 

I honestly don’t know if I can last. It’s not even that the opioid-suppresses-respiration thing is kicking in, or the pain is ridiculously worse because of the heat, but I just want to go in, get my meds, and come home, without drama or people trying to spy on me because they think they know my body better than I do when I’m the one stuck in it and they won’t even look at me.

 

(And, for the record, I can’t buy online, because the online ones don’t have ingredient lists, and about three hours of increasingly specific and weird searches leads me to the conclusion that not only are they three times more expensive than purchasing them legally, they have lactose, which means if I don’t throw them up, I won’t be able to breathe, because lactose comes from milk and I am allergic to milk. Being allergic to milk and therefore not even being able to walk down the cheese aisle without nausea and itching does not make for lactose intolerance. This is a backdoor PSA. Adults can be deathly allergic to milk.)

 

And now, because my life is not my own, I have to go tell my mum everything that happened in exact detail because she’s the only one allowed to keep her medical issues to herself.