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Against Access
Against Access by John Lee Clark
As I said on tumblr:
This is really interesting to me, in part because of the extent to which it does not match my experience as a disabled person. Which is fine, because he doesn't claim to speak for all disabled people, just for people like himself. And I am a very different kind of disabled.
Like if there was an exhibition of art made by people with chronic fatigue syndrome, part of the message would be that it is broadly the same as art made by anyone else. Having chronic fatigue definitely affects the way a person sees the world, and what they create, but not in the same clearcut, extreme way it sounds like being Deafblind does. And there is no defined subculture of cfs art, not even to the extent that there is for like... queer people. You can sometimes look at something made by someone with cfs and see how them having cfs affected their creation process, but it's not going to be in a fundamentally different language of expression created by and for people with cfs that anyone else will have to work hard to understand.
When I create something, I sometimes post it to a cfs discord I'm on because I know they'll appreciate what a gargantuan effort it was to actually finish something, but I don't expect them to like it, because they are effectively a random collection of people who are unlikely to share my specific tastes. And asides from wheelchair access (which only some of us need) accessibility for people with cfs is a complicated fuzzy thing which blurs into the kind of curb-cut-esque accessibility which helps lots of people: closed captions, places to sit, simple explanations of important information, minimising COVID risk etc.
Like... we kind of do just want what we can get of the ablebodied world, a lot of the time. Because we can mostly enjoy it, and because we have no distinct other world of our own to escape to. One of the defining features of our disability is that we don't have the energy to create such a thing! The experience of Deafblind people sounds incredibly different. And people with other kinds of disability will feel differently again.
Hell, I feel differently about how my mental illness affects my art and access needs, and I can't even speak for everyone else with cfs. Disability is a very broad umbrella covering a huge range of experiences, even amongst people with the same disability. So it's always good to get a variety of perspectives.
As I said on tumblr:
This is really interesting to me, in part because of the extent to which it does not match my experience as a disabled person. Which is fine, because he doesn't claim to speak for all disabled people, just for people like himself. And I am a very different kind of disabled.
Like if there was an exhibition of art made by people with chronic fatigue syndrome, part of the message would be that it is broadly the same as art made by anyone else. Having chronic fatigue definitely affects the way a person sees the world, and what they create, but not in the same clearcut, extreme way it sounds like being Deafblind does. And there is no defined subculture of cfs art, not even to the extent that there is for like... queer people. You can sometimes look at something made by someone with cfs and see how them having cfs affected their creation process, but it's not going to be in a fundamentally different language of expression created by and for people with cfs that anyone else will have to work hard to understand.
When I create something, I sometimes post it to a cfs discord I'm on because I know they'll appreciate what a gargantuan effort it was to actually finish something, but I don't expect them to like it, because they are effectively a random collection of people who are unlikely to share my specific tastes. And asides from wheelchair access (which only some of us need) accessibility for people with cfs is a complicated fuzzy thing which blurs into the kind of curb-cut-esque accessibility which helps lots of people: closed captions, places to sit, simple explanations of important information, minimising COVID risk etc.
Like... we kind of do just want what we can get of the ablebodied world, a lot of the time. Because we can mostly enjoy it, and because we have no distinct other world of our own to escape to. One of the defining features of our disability is that we don't have the energy to create such a thing! The experience of Deafblind people sounds incredibly different. And people with other kinds of disability will feel differently again.
Hell, I feel differently about how my mental illness affects my art and access needs, and I can't even speak for everyone else with cfs. Disability is a very broad umbrella covering a huge range of experiences, even amongst people with the same disability. So it's always good to get a variety of perspectives.
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I love this, but it does also immediately make me think (because my mind's a damn contrarian) of the fact that Piranesi is so short and has such simple plain language compared to the previous epistolary writing of Suzanne Clark because of her CFS, and that she wrote it so radically differently, and the themes changed so much, *because* of her CFS, and she's said that repeatedly in interviews with a kind of...not melancholy, but certainly awareness that this is the only way she knows how to do it now, and that she can't go back. (Which I think just comes into the thing you say in the same paragraph in that there's no defined subculture). (And maybe she can go back, or maybe she'll keep going forwards, who knows).
There's nothing potent in that, I just found her transition from something as dense and actually impossible for me to read to Piranesi (which was easy for me to read) being due to CFS pretty remarkable.
Also yeah there's like this... particular feeling when something is accomplished among people who Get Fatigue. When I cook a meal, it's huge - it might not be for someone else with fatigue but it is for me. It is as impressive and exciting as going to a movie or concert. There are things which are like... I enjoy celebrating that with someone else who gets it - and their achievements too. Whether it's laundry, or folding, or making lunch. And then the achievements like finishing a project, just... it's not compersion but it's some kind of happy-making feeling of like 'yeahhhhh!!!' being happy for someone else.
None of this is particularly relevant to the article though, which I found super interesting.
One of the defining features of our disability is that we don't have the energy to create such a thing!
This is one of those things that seems so obvious and yet had never concretely occurred to me before and I'll be noodling on it and my own fatigue stuff (which has often made me feel separate from the Disability community because I'm too tired to participate in it much which I'm now like 'oh that's literally... oh right okay, cool') and just...yeah anyway I really like reading your posts you don't have to reply to my rambling! <333
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Oh yeah having cfs definitely affects the way one creates. There are probably overall patterns in both the style and content, which could be interesting to figure out if enough creative people with cfs got together to discuss it.
But it's not as clearcut as "this work is an entirely new genre created by and for Deafblind people, and literally doesn't make sense unless you engage with it as if you were Deafblind." Piranesi *is the *kind of novel it is as a result of Suzanne Clark's cfs, which certainly had a huge effect on her life and how creation works for her, but afaict (I will read it... one day...) it's still just a novel, not some new and unique cfs-specific storytelling medium, and people without cfs don't have to change how they engage with fiction to be able to enjoy it.
It's like with communication: It's true, in a sense, that "only people with cfs can really understand other people with cfs", certainly when it comes to getting across complicated emotional experiences to do with our fatigue. But Deafblind people needed to create an entirely new language to even be able to like... order pizza, or ask what time it is. It's a whole other level of separate experience and communication methods.
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Wonders: Is that why I found Piranesi to be accessible, whereas the previous Clark I attempted was Too Much.
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I'm glad you liked it!
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Very interesting article, thanks for sharing! I have a bunch of half-baked reactions and will have to digest it, which is always satisfying.
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Yes, I enjoyed how much it got me thinking too!
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Yeah, disability and its impact on us is so varied, and that article was thought-provoking
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Glad you liked it.