Shopping While Disabled Is Not Fun!

CN: discrimination

 

So, between all this, life goes on.

 

Here are a few highlights from my attempts to do basic stuff like send mail, buy things, and generally exist:

Continue reading Shopping While Disabled Is Not Fun!

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PTS*

cn: ptss, chronic pain, gender stuff (inc. references to surgery)

 

I had an appointment with previous-doctor last week. He somehow got hold of my test results, and despite trumpeting himself as a super-duper in-demand expert, said “well you have reasons to feel like crap”, “that doesn’t make sense you’re not fat and you don’t drink”, and walked out. He likes to walk out when he’s done talking and talk over me typing so I don’t get to actually ask questions. So I followed him out, signed the Medicare form, and the receptionist didn’t ask if I needed a new appointment so I didn’t make one.

 

Apart from that, I haven’t left the house in two weeks. I only just, two days ago, convinced myself to do the washing and wash the clothes I wore to the test. I didn’t check my email for over a week and I still have some that I can’t make myself read.

 

This would be a classic PTSS episode, but for one thing. I don’t know if it was the test that triggered it or not.

Continue reading PTS*

before and after

CN: medical care with gender non-conforming body, disability, accomodating disability and medical procedures, mentions of sexual boundaries being violated, body image issues 

So the MRI went as well as I expected – that is to say, not well. I was not allowed to lie on my side as I asked and so, apart from running out to get meds the day after (which was not fun and extremely difficult for me, to the point that random strangers insisted on ‘helping’ and making things worse) I have been stuck at home all week, not able to cook for myself, walk unsupported, shower, stay awake, or see unimpeded. It has been six days and my legs and feet are still burning, my back still aches, and the band pain kicked in last night, so at least I know it’s peaked now.

 

But on Tuesday I have to have an ECG (electrocardiogram). My echocardiogram from 2014 has gotten lost to the annals of time, and the doctor who ordered it is about as good at sending records as he is at diagnosing chronic pain, so it’s as good as never having existed, except for the utterly dehumanising experience burned into my memory and the report which I know I saw.

Continue reading before and after

A Privileged Position

TW: medical treatment for non-gender-binary and trans people, privilege

 

Side note: rumour has it that one no longer needs to provide ID to get codeine, at least until it goes script-only. Small wins are good, right?

 

So all this medical stuff I’m going through lately, and specifically how people seem unable to see ‘me’ in all this, has made me think about how i fit into the whole thing and how trans* and non-binary people get care. My position is that because i am afab (assigned female at birth), and since that’s generally how people assume when they see me, even if i do my makeup and bind and layer specifically for passing (especially now), i don’t really get put in the position of having to ‘convince’ anyone i was afab for things that is necessary for.

And, it is, unfortunately necessary. Because medical experimentation and treatment outlines and pretty much everything is designated male or female, it’s something that sticks with someone even if they surgically transition and live entirely as their preferred gender identity. (It’s very embarrassing to have to approach FtM relatives, for example, to ask if they had endometriosis, just fyi.) So, because i was afab and because i don’t want to permanently alter how i look, i don’t get the ‘but i was afab so you do need to give me a pap smear’ things.

What i also don’t get is valid and appropriate care for things which should not be gendered but are. Half of my heart is enlarged and i have a family history of heart disease (the rocks fall everyone dies kind of history). Because i don’t present male enough, it isn’t being taken seriously. Nobody knows why my heart is enlarged. Nobody thinks it’s worth looking into, no matter how much noise i make over it. Heart disease is a male illness; the warning signs and treatments are all designed for and tested exclusively on men. The fact that my heart isn’t working how it should, because i do not present male, is not important. The fact that i get dizzy if i move too fast, that my right shoulder doesn’t work, that i get chest pains for no reason – these mean nothing.

Well, i am told that the chest pains are just anxiety, because i have a mental health diagnosis, but then if that was the case it wouldn’t happen exclusively when i’m either sitting doing nothing and being very calm, or in the middle of the most strenuous physical activity i can not fail at doing.

 

Because i present female (even when i don’t mean to), doctors treat me as the stereotypical female. Since i have a mental health diagnosis from when i presented as a female under thirty… every physical thing gets written off as stress. i don’t get second opinions. i don’t get the right scans – just the cheapest. i had an echocardiogram after six months of saying ‘this isn’t right’. The cardiologist sent back a report saying it wasn’t concerning. My family history wasn’t passed on to him. i’m sure my file sits next to my dad’s in their file room, but confidentiality means even if someone noticed, they couldn’t use that as a reason to suspect a connection. Another doctor asked why i hadn’t had an ECG or a stress test, until he saw the report. Then, well…

Because people who present female and still count as ‘young’ are still ‘hysterical’ and ‘its just stress’.

 

And this is before the gynaecologist, where suddenly i’m not dysphoric enough to have a procedure i asked for for medical reasons, and i’m meant to wait until i’m older “in case”.

 

My point is, i think, that having any kind of non-binary or trans identity not only blocks people from accessing care due to the attitudes and assumptions of physicians, but even without those, we can never escape our birth identity. It still defines us, for them. We can’t avoid their boxes and the traits that go with them. Some of us have privilege that matches enough to get what we need; some of us do not. Some of us have to apply labels we don’t identify with to get what we need; some of us do not. Some of us can fight for what we need; some of us can’t.

It’s not us that need to change.

That’s The Thing About Football

TW: discussion of media coverage of rape, retraumatisation, rape culture, discussion of social media discussion of rape, police handling of rape

 

It’s the start of March. While the boys have been back training for some months now, some even since October, and the last few weeks have been filled with pre-season matches and promotional events, this is when footy season starts for real. We now get six months where there’s no break from it, as opposed to the off-season, where there might be one day a week where the news doesn’t cross to some oval somewhere, or a player hasn’t done something.

 

Continue reading That’s The Thing About Football

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