Tell me about your disability--for research

[ruthmadison]

I was thinking about writing a how-to article for writers wanting to include characters with disabilities in their books.

I'd like to do a section for each disability with important details you should know.

(Also a section on overdone plots that writers may not realize have been done to death!)

So I'd love if you could respond here or by PM to tell me some unique details about your disability that you'd like to see authors get right.

[Max]

Excellent idea Ruth! I'll see what I can come up with.

[jordan]

Ruth I'd be happy to talk about my experiences with muscular dystrophy... I'm about to be eating dinner but I'll be around this evening, I prefer to answer any questions you have via PM

[jordan]

Lucretia, while I agree with you completely that nobody experiences a disability in quite the same way, even if it's the same condition or same general level of spiral cord injury or whatever it's going to be a very subjective experience. However I believe for a writer, especially one writing a work of fiction featuring a character with a disability, it can be a very valuable resource to have an understanding of real people's experiences with their disabilities. If you're striving for accuracy in depicting the life of someone with a disability, it can be helpful to have real sources to draw on. If I were to be writing something I might incorporate different individuals' experiences with similar types of disabilities to create that unique character.

[alf]

[janewheeler]

Well, as someone who is in the same boat with regards to trying to write with accuracy, maybe just knowing what to ask about would be nice. General categories that are vague enough to consider over a broad group of people, but that might prompt further questions when you're trying to write about a specific person's experience.

Example:
If I'm writing about a person with SCI, I'd want to know the level of their injury (more general) because that's what will be the most helpful in determining certain things. And then I'd want to know about things like the ASIA scale and dermatomes and all that, because I didn't realize how that was different.

But after that, you can start getting into the more specific stuff, like what one person's experience has been vs. another's.

Maybe one of the ways you could approach this from a "lived experiences" perspective, Ruth, is by asking people with various disabilities or conditions what some of the "shibboleths" or misconceptions are when they see depictions of their disability. (A shibboleth is more or less the sort of thing whose use, if correct, immediately signifies whether you are part of a group or not -- like, for example, newscasters knowing how to correctly pronounce towns in your area, and if they don't you immediately know they're not from around here.)

So, for example, if you see a character in a book who is doing Thing A or B that a para would never do, or that someone is skipping Step X or Y in their daily routine with no reference at all to it happening, that would be helpful to know.

[jordan]

I'm writing a lengthy response in the form of a narrative of my experiences with my specific disability, I'm including the changes I went through physically as my condition progressed, as well as watershed moments in my life that I feel define who I am today, and how my disability and my condition at the time relates to those moments... don't know if that will be enough but I think it will help guide people when they're talking about muscular dystrophy specifically at least. I may post that write up on the forum at some point as well

[Ximena]

Oct 13, 2012 18:52:13 GMT -5 @jordan said:

I'm writing a lengthy response in the form of a narrative of my experiences with my specific disability, I'm including the changes I went through physically as my condition progressed, as well as watershed moments in my life that I feel define who I am today, and how my disability and my condition at the time relates to those moments... don't know if that will be enough but I think it will help guide people when they're talking about muscular dystrophy specifically at least. I may post that write up on the forum at some point as well

I wouldn't mind a copy of that, myself, Jordan.

[jordan]

Ximena I'd be happy to share that with you, you may have heard some of that story from our past conversations... I'm about to send Ruth the first half of it, I didn't want to give up my entire night writing it because it's turned out to be much more detailed than I originally expected, but once I finish the entire thing I'll get it to you as well

[thatgimpyguy]

Oct 13, 2012 17:22:18 GMT -5 @jordan said:

Ruth I'd be happy to talk about my experiences with muscular dystrophy... I'm about to be eating dinner but I'll be around this evening, I prefer to answer any questions you have via PM

Samesies, but Spinal Muscular Atrophy Type 1

[devogirl]

I think an article is a great idea. Especially the part about cliched, overdone plots, and glaring errors to avoid. I trust Ruth to frame it not as "here's what this disability is like for everyone" but as "everyone's experience is different, do more research before starting to write." But it's clear so many writers don't even know where to start, and are unaware that their brilliant unique idea has been done a million times already. This could be a useful resource.

And Alf, what do you even mean by porn alert? Are you saying Ruth is only doing this for her own private enjoyment?

[mike]

I wouldn't mind writing about my experience, but don't know if it would shed any light that would be helpful. My issue is pretty uncommon, so its unlikely anyone would include it in a story. If you're interested though, let me know and I'll write about it.

[ruthmadison]

Actually, I'm thinking I'll do a whole book. A how-to book.

And I will definitely explain that every experience of disability is unique so these are just guidelines!

It would be helpful, I think, for non-dev authors who are struck with the idea that it would be so freakin unique/inspirational/awesome of them to include a character with a disability! We've already seen a few authors I've interviewed admit that they were too scared to do any research before writing their books, as they didn't want to approach people with disabilities to ask questions. I've had one conversation on twitter already with someone who has an idea for a book with a disabled hero, but she hasn't written it because she doesn't know where to begin.

I'd love to see these in PM or through email [e-mail] because more intimate details would be really helpful for authors too (And your contributions would be completely anonymous. I will summarize and reword what gets sent).

btw, I don't need your stories to "get off." Trust me. That's why I make up my own. I'm perfectly satisfied by my imaginary people.

[ruthmadison]

Oct 13, 2012 20:22:49 GMT -5 @jordan said:

Ximena I'd be happy to share that with you, you may have heard some of that story from our past conversations... I'm about to send Ruth the first half of it, I didn't want to give up my entire night writing it because it's turned out to be much more detailed than I originally expected, but once I finish the entire thing I'll get it to you as well

Looking forward to reading it! Thank you

Also, I love Jane's idea for people to mention common misconceptions that they see and hear about their disability.

[ruthmadison]

Oct 13, 2012 22:42:54 GMT -5 mike said:

I wouldn't mind writing about my experience, but don't know if it would shed any light that would be helpful. My issue is pretty uncommon, so its unlikely anyone would include it in a story. If you're interested though, let me know and I'll write about it.

I think some people are looking for a disability that's unusual. Those of us who have written a lot of stories about SCI might be looking for something new to explore.