#disability experience

[disability-experiences]

the chronically ill experience getting tested for various illnesses and whenever you say that you hope this one shows some results everyone says 'Why would you want to be sick?'

it's like they don't understand that I am already sick, I want to know what I have, how to treat it, and if it will effect my life expectancy. looking for a diagnosis is not going to the chronic illness store to buy a chronic illness.

[fruitdragon]

Turns out the forearm crutches I need are going to cost me $267 and that is currently more than is in my bank account. I get paid on the 18th, but alot of that goes to school expenses and I'm not sure if I'm getting disability grant this year. I'm so fucking tired of it being expensive to use my own body.

That + physio + prescriptions + more special testing + blood sugar monitors + other disability aids + I need to eat! Make Fen a poor bitch

[remyisme]

having a very early diagnoses of Tourettes leads to some really funny stories, like how I told everyone I had 'non-deadly tetanus' in grade two and 'Tetris' in grade one.

I also ran face first into a tree once at camp. I still have the scar.

idk why but I felt the need to share some funny moments tonight.

(quick add on: whilst I was doing the tags for this post I had 'disa" n trying to find some disability tags and it autocorrected to 'Lisa'. I am no longer disabled I am Lisa)

[spaced0lphin]

The Problem with the EDI Thing

It will surprise no one who’s familiar with me to know that I’ve sat on these opinions for what is, embarrassingly, close to a decade. I remember not having the vocabulary to explain how I felt at the time, and my opinion has done a little evolving since then, but seeing as I’m doing the whole Mass Effect thing right now, I may as well explain myself. I’m very much not a fan of the Joker/EDI pairing, and if you are, power to you. However, I have some feelings about that that come from who I am as a person as well as just surface level stuff such as not finding that romance particularly substantive, but there we are.  I don’t have osteogenesis imperfecta, but I am a disabled person. Ain’t that fun to write. I’m not embarrassed about it, but I also don’t like talking about my stuff too much, since, like, it’s private? So forgive me for being a little vague. It’s relevant to the points I’m making, though, so bear with me I guess. So part of the reason I like Joker so much as a character is that he’s lived a life where people have just told him no, all the time, and yet he aggressively exists, even in spite of it. Wasn’t born into money, had a bunch of horrible problems, and didn’t ask for any of it. Everywhere he looked, some dickhead was at the door telling him to stop trying. However, he had his dream and his drive and his passion, so fuck what those people said. He went for it, he broke all the rules that people had put in the way of even letting him try. He knew that if he had a shot, he could do it. It was just about getting that shot. He knew his specialism could do the rest. Man, I relate. I can’t tell you how many times I’ve been forced to have to “prove myself” to fit into someone else’s definition of what a “good candidate” is. There have been so many instances where, because I don’t ‘fit in the box’ like everybody else, I’ve had to work twice as hard and still get overlooked anyway, even despite having the knowledge or the skills. It’s honestly bullshit, so seeing him in the position he’s in really means a lot to me. It’s a breath of fresh air to see someone with such obvious struggles still do what they love to do. So, being disabled, you get condescended to, quite a lot for one reason or another. People talk to you like you’re a child, or make weird assumptions about what your life experiences are, or start being a dickhead to you once they’re tired of how you struggle with your disability. It seems like people just kind of expect you to get over it at some point, especially so if the disabilities aren’t visible. “I guess I just thought you’d be better at this by now” starts to become a phrase you can just tattoo on yourself and have a person point to whenever they want to say it so it doesn’t waste any more of either of your time. It can make you cagey, defensive, emotionally withdrawn, and fucking tired. Not only do you have to deal with whatever it is physically or mentally or both, but now you’ve got your own insecurities and other people’s insecurities about you to deal with all the time, every day. Some people turn this acid manufactured through this daily experience into sarcasm and dry humour, a sometimes self-deprecating deflection tool you can deploy to make people smile and defuse the situation and not talk about anything important because good god let’s not go through that again.

You can sometimes get weird ideas about whether or not you deserve to be loved like everybody else. Because you’re different, and you function differently, you can sometimes feel like you are looking at the world from the outside, on the sideline. Because you have a disability that does indeed work to your detriment, whatever it is, because of its very nature as a fucking disability and not a superpower, getting caught up in that question of whether or not you deserve to be loved and the “I just thought you’d be better at this by now” exasperation from other people combines into this huge ugly thing. Now, I’m a big fan of sci-fi and transhumanist concepts and I love moral and ethical discussions about what constitutes a person and all that good stuff. I enjoy EDI as a character and as a concept. I especially enjoy EDI when she’s a sphere with a little Winamp visualiser for a mouth, because I feel like it creates a lot more of a dialogue around that specific idea and it’s fun to talk about. When she looks like an abstract object, how can she be a person? And yet, she both is and is not. So, I find it more than a little thematically weak that EDI gets this like, 1950s style fembot body that looks like she’s wearing garters. I mean, I’m bi, I like hot women too, but that aesthetic decision was very strange and I felt undermined the previous and interesting work done to explore EDI as a concept. EDI grows and evolves in several ways throughout the games, but is, at the end of the day a machine, and doesn’t experience love in the same way, if at all. She learns to approximate human behaviour and eventually learns to mimic and anticipate quite a lot, but she is what she is, and I don’t think there’s any taking away from that. From a purely writing based perspective, I found that path fairly tokenistic and poorly justified, in my view. It also always read to me as ‘d’aww, throw the guy a bone,’ ‘haha pat him on the head and give him a toy’ type thing rather than an actual real emotional exploration, which, given how the entire game series makes it very clear to us that Joker is a very important character, seemed... weird. So when you combine all of this, I’m so allergic to the Joker/EDI pairing because personally I find it condescending. I find it communicating to me that, no, I and others like me are in fact not worthy of a powerful and passionate romance with peers. What we are worth is a tokenistic, fetishistic and ultimately unrequited fling with a fleshlight. Like, that’s how it feels to me! I get that my experiences aren’t universal or whatever but I’ve had nearly ten real entire years to think about it, and I can’t interpret it any other way. I literally do not have any animosity whatsoever where it comes to Joker and any other pairup. It’s only Joker/EDI and it’s fucking frustrating that that’s the canon one. I’m sure I can make another equally long and boring post about the case for Joker/Shep and I’m sure I probably will do because it’s not like we’re leaving the house much these days. Inb4 y u take fictional character so srs y u talk about art

[disability-experiences]

sorry if this is a weird question, but is it okay to call myself physically disabled when all my issues are gastroenterological and urological? I mean, they are physical, and chronic, but it feels like I’m undermining other people with more severe/prominent physical disabilities, so I feel wrong without asking

I am not entirely sure, so I cannot give a specific answer, but I’ll let other people give their opinions

I am glad you asked to be quite honest, I haven’t thought about it before and now I think I should

[disability-experiences]

my teacher told me not to call myself disabled

[disability-experiences]

I am so sick of people telling me not to say I can't do things. my ability to do the things I cannot do is not how I measure my worth as a person, but whenever someone responds to me saying I can't with reassurance that they think I can, it tells me that it is how they measure my worth.

(sorry if the wording is unclear)

I absolutely despise when I’m told not to say or think negative things, like it is not that easy to just redirect thoughts sometimes, it’s a disability, it will disable the person at times

Agreed on how it sucks that people’s worth are measured by what they can do and not the fact they are a person

Your wording as good don’t worry /gen