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Access, ability, health: this week’s round - Barnstorming on an Invisible Segway [entries|archive|friends|userinfo]
Marissa Lingen

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Access, ability, health: this week’s round [Nov. 19th, 2015|09:36 pm]
Marissa Lingen
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After the debacle that has been several years of World Fantasy Con, Mary Robinette Kowal has posted a convention accessibility pledge. It’s worth a look; it’s worth thinking and talking about. I specifically want to highlight something that I know Mary and the other people who have been talking about this pledge agree with: that the ADA (Americans with Disabilities Act) is a starting point for convention accessibility, not the be-all and end-all. Not everyone will want to sign this pledge for a number of reasons, but taking part in the conversation and advocating for accessibility is important for all of us regardless of what form it takes.


Accessibility is an ongoing conversation in part because it never takes part on just one axis. Something that makes a convention more accessible for people with one kind of limited mobility won’t help people with another kind; mobility accessibility won’t help people with hearing limitations; and so on. We understand more about neurodiversity than we did twenty years ago, or even ten, but our understanding is still imperfect.


It’s been disheartening to watch people get defensive on these issues, to see comments that amount to “I’ve tried hard and been a good person and that should be enough”–especially since “trying hard” often applies to completely different fields of endeavor: you can try very hard to have an allergen-friendly green room, and that’s wonderful, and it doesn’t do anything for wheelchair access to panels.


The post I intended to write, before this came up, was about unhelpful reactions to other people’s medical situations–thankfully not mine, no one’s in my house. I have watched people play “guess the random diagnosis” for a friend who was having enough trouble without having their random friends with no medical expertise whatsoever pelt them with guesses for diagnosis and treatment. I have listened to stories of misrecorded personal details that could have serious impact on future care. I have heard reports of care costs that were supposed to be covered by insurance and were not, to the tune of four figures–or that were covered by insurance, and were still four figures. So the main thing I wanted to say was, “Never start talking about someone else’s medical care with, ‘you should just…’ because it’s almost never ‘just.'”


And this ties back in with convention accessibility, because if you’re dealing with health problems and/or disability. Even if they’re short-term–even if you’re “just” broken your leg and “only” have to get around on crutches for weeks. You are already wrestling with a labyrinthine system that is draining your time and energy in addition to the health problem that is draining your time and energy. And then you turn to your leisure activities to relax, and you’re the one who has to put in more and more time and energy to make them baseline functional. If the conrunners don’t do it in advance, it’s the people who are already having problems in the first place (this is a known pattern across other concerns) who have to put in more time and energy that they already have depleted.


I had a miniature hissy fit while doing some revisions on Itasca Peterson, Wendigo Hunter. I was adding supporting characters, and I noticed that everyone in the book was apparently able-bodied. And I had a miniature meltdown in the privacy of my office, going, “I have to deal with disability crap both first-hand and second-hand every day. Literally every. Day. Why can’t some able-bodied person who lives only with able-bodied people be the one to notice and deal with it in their children’s book?” I am not proud of this hissy fit, and when I had finished with my meltdown, I pulled up my socks and gave one of the kickass college students Itasca looks up to a kickass walker that is painted with cool designs. Which is not the ne plus ultra of disability in children’s books, so hey, any able-bodied person who lives only with able-bodied people who wants to notice and deal, feel free. But it circles back again: the people who have to deal with this stuff, statistically, will be the ones who deal with this stuff.


So if that’s not you, one way or another…think about changing the trend somehow? Thanks.




Originally published at Novel Gazing Redux

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Comments:
From: sheff_dogs
2015-11-20 02:21 pm (UTC)
I'd go further on other peoples's health 'Don't suggest 'cures' when you have no medical background and have been told that it is a chronic condition with no cure'. I suggest this because so many people want to show their care for you by making you better, when accepting that that is not possible would actually be far more caring.

I could go into a very long rant on that, but I'll refrain.


Hissy fit completely understandable.
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[User Picture]From: lydy
2015-11-20 02:56 pm (UTC)
I can tell disability and access are an important issue by the extremely vehement way in which I wish to shy away from the topic. I am currently in the process of trying to sit with my discomfort, in hopes of waiting out my personal hissy fit, so that I can do some useful thinking on the topic.

In several ways, I think this is actually a more complicated issue than the harassment issues that I've spent my time neck deep in. It's considerably more multifactorial, and logistically more complex.
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[User Picture]From: mrissa
2015-11-20 10:08 pm (UTC)
I think that asking, "Are you looking for suggestions?" is reasonable in all circumstances. Even if you ARE a medical professional. And if the person says no, DON'T GIVE THEM.

Even if you're pretty sure it's curable.

Even if you're pretty sure you have the cure in your pocket, right this minute, and you can be the hero, right now.
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From: sheff_dogs
2015-11-21 02:20 pm (UTC)
True.

I know I am feeling a little sensitive on the subject. The partner of one of my brothers waded in last week, I like her, but don't know her well as they don't live locally and we all had just a day together. I did not want to spend time having my health dissected, I am very much a science person so alternative medicine suggestions are not my thing and I didn't know how to say 'leave it' without offending. I know how to disagree with my brother about things, I don't yet know how to disagree with her about things.
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[User Picture]From: mrissa
2015-11-21 11:06 pm (UTC)
Learning to disagree with people, especially people who were indirectly chosen for you, is strange and fraught. Best of luck with navigating those waters.
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[User Picture]From: reveritas
2015-11-21 11:45 pm (UTC)
I did not want to spend time having my health dissected

Exactly!?! JFC. I'm a person with a chronic disease also and it's not like I don't think about the fucking thing enough, now someone else wants me to talk about it even more, thanks but no thanks! Solidarity.

The wanting to be the hero as Mris said is a big thing. I mean, I do it too but more with social situations than health ones but I still think I sometimes have the cure for what ails you RIGHT HERE!! (The right thing to say, the best gift to give ...)
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From: sheff_dogs
2015-11-22 04:12 pm (UTC)
Absolutly. It's such a large and natural part of caring for people to want things to be right for them that we don't always stop to think if we'd be better off not trying to help with advice! I know am inclined this way, though I hope I'm better than the know-it-all with all the answers I used to be when I was younger!
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[User Picture]From: klwilliams
2015-11-24 02:06 am (UTC)
I'm so tired of "You should just...." I also never wanted to become That Person, the one who notices and points out the problems, like the problem of getting to a panel on the second floor when there is no elevator, or that no one is getting up to give the very old woman on the train a seat, or that the disabled bathroom stalls are being used by people changing their clothes. But I have become That Person, because it all impacts my life.
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[User Picture]From: mrissa
2015-11-24 02:24 am (UTC)
That Person is sometimes a public service.
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[User Picture]From: thanate
2015-11-25 08:42 pm (UTC)
My MC just fell off a climbing rope (because there was a glowing possibly-celestial being yelling at her) and sprained her ankle. Presumably that's temporary, though.

Reminders of this sort: often helpful. Thanks.
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