Resources on disabilities you don't share

[chordatesrock]

Now that I'm here, this seems like a good place to ask about something. I've brought this up before, but not really in a place or with people that would be conducive to talking it out and doing anything about it. (A simple solution like "go looking for a community of people who would totally already be interested" didn't occur to me immediately. *facepalm*)

There needs to be a resource for disabled writers (and nondisabled ones, I guess) to go to for information specific to portraying disabilities they don't share. I'm imagining that it would involve links to relevant articles and forums, if any exist, book titles that might be helpful, blogs by people with the disability in question (ones who blog about their disability, obviously), a few common problematic representations, and ideally it would include one or more people willing to answer questions, discuss plots, beta for accuracy, whatever. It would also be cool if it had a "pop quiz" to check whether you'd absorbed enough from the listed resources. Obviously, that last idea would hardly be perfect on its own, but I'm thinking it could serve as a wake-up call that you don't know as much as you thought you did, or as reassurance that you're not going to fail and you can breathe easy.

Does this exist already? If not, I... really don't know what to do to make it, but volunteer to do most/much of the work putting it together if someone gives me ideas and helps me figure out what to do.

(And it really needs a way to submit anonymously. The disabilities with the worst media representation are probably also the ones people least want to admit to having.)

ETA: it exists! You can find it at accessportrayal and on LJ at accessportrayal. By the way, does anyone know how to put a link in a profile?

Comments

[alexseanchai]

Fabulous idea that I've no idea how to help put it together, sorry. But I think disability vis-a-vis media representation is more a visibility of disability issue than a willingness to admit disability issue. A screencap of Supernatural S5 Bobby, it's obvious he's got a disability, as he's in a wheelchair. A screencap of Percy Jackson, no way of knowing he's got dyslexia without checking the script or the books, unless the screencap's of the CGI moving letters.

Anonymous submissions still an absolute necessity, but not so much for the reason you give, I think.

[chordatesrock]

Okay, sure. I wasn't thinking that part through very much anyway, just thinking of a couple of example disabilities and going from there. Maybe at some point it would be interesting to actually look into how badly different disabilities are represented and ways that are unique to specific disabilities or categories of disability... but no way do I have time to do that.

But we can agree that a lot of people don't want to deal with coming out publicly if they have a choice (and on the internet, most of us do), and that doesn't mean they're cowards or lying or aren't really disabled. That's the important part.

Hmm, what about a community? People could post themselves, but also have a system like they have on little_details, where you can make an anonymous comment on a specific post and the mod will post it for you. Is there a way to design a community so it's on Dreamwidth and LJ simultaneously?

[alexseanchai]

Poke #dreamwidth IRC if you do IRC, or tell me if you don't so I can poke them for you. I think stuff has to be manually crossposted from a DW comm to LJ and I don't think LJ crossposts to DW at all, but I don't know.

[chordatesrock]

I don't even know what IRC is.

[alexseanchai]

Internet Relay Chat, text-based communication, not terribly relevant except as a good way to get hold of DW-knowledgeable types. (Lot of fun though.) I'll link them here.

ETA: I am assured that comms can be imported from LJ to DW but not vice versa and that crossposting involving a comm is manual only.

[chordatesrock]

Thank you for that information!

Do you think a comm is a good idea anyway? Or do you think that a different format would work better? I don't know what else is possible.

Would a template be a good idea, with specific sections to list? I mean, I'd still want people to contribute whatever they knew, even if they didn't have something for each section, but maybe a template would help people to get things organized?

And how do you break things down, anyway? The more I think about this the more I don't know what I'm doing. How specific should it get? How should it be grouped? Should I just go with how contributors identify? What if someone writes something on, say, cPTSD, and another person writes about mental illness in general?

I mean, I know this has to happen. Other than that, I'm just... yeah.

Anyway, thank you for all your help so far!

Thoughts

[ysabetwordsmith]

>>Do you think a comm is a good idea anyway?<<

It would help. It's an easy place for creative people to ask questions; there are comms like that on other topics. However ...

>> Or do you think that a different format would work better? I don't know what else is possible. <<

... what you describe goes way beyond what a comm can do. You need a website that can archive materials: articles, essays, a database of stories, a list of disabilities covered, links to medical and literary resources, etc. That requires some serious data handling ability. So, can you build a website? Or find someone else who can?

If not, a comm is better than nothing. It's what I have for crowdfunding; not enough, but it gets some stuff done.

>>Would a template be a good idea, with specific sections to list? I mean, I'd still want people to contribute whatever they knew, even if they didn't have something for each section, but maybe a template would help people to get things organized?<<

Yes, a template helps. It's harder to think things up from scratch. Just include a "Further Information" section at the bottom.

>>And how do you break things down, anyway?<<

Probably organize it by type of disability. That seems like the most logical way people would search. ("I have a blind character. What resources do I need to portray that accurately?" Search: blindness, vision impairment) If you can rig a database program, however, it will also be possible to do things like search for authors who write about disabilities, or sample stories with a given type of flaw such as erasure.

The more I think about this the more I don't know what I'm doing. How specific should it get? How should it be grouped? Should I just go with how contributors identify? What if someone writes something on, say, cPTSD, and another person writes about mental illness in general?

>>How specific should it get? How should it be grouped?<<

Ideally, nest narrow categories within broad ones:
Physical Disabilities > Vision Impairment > Cataracts

At the broad levels, there can be resources pertaining to most or all disabilities in that category. Narrowing in will be materials that deal with a more specific disability, as distinguished from others that have different effects onstage.

>>Should I just go with how contributors identify?<<

I'd say look up official designations for handicaps, but also cross-reference with common descriptions so you'll catch whatever people are using.

>> What if someone writes something on, say, cPTSD, and another person writes about mental illness in general?<<

Cross-reference because some things will apply to multiple categories or levels. Remember, you'll want stuff at different levels of scope. A story based on "Jane uses a wheelchair" may need different details than "Jane's legs were smashed in a rock-climbing accident, so now she uses a wheelchair" which is distinct from "Jane was born without legs."

Re: Thoughts

[chordatesrock]

Thanks! I like your "further information" idea.

What about cases where I can think of multiple different broader categories that could describe the same thing? As an example, should it go like this:
Physical Disabilities > Mobility Impairments > Multiple Sclerosis

Or should it go like this:
Physical Disabilities > Chronic Pain Conditions > Multiple Sclerosis

Should MS be listed twice? Or listed under something else, like chronic illnesses? (But would someone looking for reasons to give their character a wheelchair look under chronic illnesses?) Or listed under everything where it applies?

Maybe there should be multiple lists of disabilities broken down all of those ways. Like, lists by symptoms, lists by age of onset (but that would run into problems with cataracts, since those can be acquired in old age or at a younger age or they can be congenital), lists by relevant assistive tech... anything else?

And also, I have no idea how to build a website. At all.

Re: Thoughts

[ysabetwordsmith]

>>What about cases where I can think of multiple different broader categories that could describe the same
thing? <<

List a specific condition under
all the categories that it fits.
*ponder* Perhaps a better approach
would be like the fanfic archives
use, with tags. So MS would be
tagged "physical disability,
chronic condition, mobility
impairment, pain, wheelchair,"
etc.

>>Maybe there should be multiple lists of disabilities broken down all of those ways. Like, lists by symptoms, lists by age of onset (but that would run into problems with cataracts, since those can be acquired in old age or at a younger age or they can be congenital), lists by relevant assistive tech... anything
else?<<

Good lists. Other possibilities:
plot function, associated cliches,
frequency of occurrence.

>>And also, I have no idea how to build a website. At all.<<

Then your options include:

* Start with a DW and/or LJ comm
and do what you can with that.

* Choose a web host with good
buildware and assembles the
pieces as best you can. I've had
some luck with Weebly for that.

* Find a volunteer who can code
and cares about this project, who
will build a site for free.

* Work out a rough site design,
price what it would cost to build,
and do a fundraiser for that.

Re: Thoughts

[chordatesrock]

I think I'm going to go with a comm. If (when?) it proves inadequate, I'll know how and why it's inadequate and that will help me understand what would work better.

HUGE thank you to everyone who's helped me with this so far!

Re: Thoughts

[ysabetwordsmith]

That's a good starting point.

Re: Thoughts

[teafeather]

If you decide to go with a stand-alone website, using Drupal as your content management system will let you list the same page in multiple categories.

Try this...

[ysabetwordsmith]

>>Maybe at some point it would be interesting to actually look into how badly different disabilities are represented and ways that are unique to specific disabilities or categories of disability... but no way do I have time to do that.<<

Ask for volunteers to host a topic, or contribute materials. Ideally you'd want people who have that disability, are immediate family of someone else who does, are professional carers, or have other serious credentials. But even a fanmade survey of available literature would be an improvement. The main thing is, you'll need to spread out the workload.

[kaz]

This is a fantastic idea, and also something I've been missing. (Also, I can talk your ear off about problems with the representation of stuttering/stammering in the available literature and things I'd like to see. So you have one volunteer for a disability already...)

For websites, would some kind of moderated wiki work? I'm not sure the format would be entirely right and it might be tricky if you want to make sure people can only contribute to stuff they're personally affected by, but it offers way better archival and cross-referencing facilities than a DW comm and means you don't have to design a website from scratch - there's a lot of wiki space available online. Or possibly you could have a comm and an attached closed wiki that the mods can upload stuff to once it's been crowdsourced and vetted by the community, but that would be even more work.

[chordatesrock]

A wiki sounds like an absolutely awesome idea. Re: the idea of moderating it or requiring some kind of vetting, there are some really low-incidence disabilities out there, where there might just be one person willing to contribute who has personal experience. How do you moderate something like that? If the average mod knew enough to check for accuracy, what would be the point of the project at all? I mean, okay, anyone can see blatant vandalism, but... anyone can see it, so it's pretty easy to fix. I think I should research how Wikipedia handles this problem. They seem to have relatively little vandalism and a lot of writing on topics that range from well-known to very obscure.

What about a wiki with a comm for discussing any issues that come up and whatever other wiki-related discussion needs to happen? Or would a wiki talk page work for that, do you think? I think a wiki is a great idea, though... but where do you make wikis? Wikia? Someplace else?

I'm glad to hear we can hope for you to add something about stuttering. By the way, Kaz, do you ever talk ideas/fics over with people if they're writing about things you have experience with?