capriuni: Text: If you want to be a Hero, be Good to the Storyteller. (Storyteller)
In the real world, the disabled have to fight for the right to safety, education, employment, freedom of assembly, and self-determination. So does the way disabled characters are portrayed in stories we tell really matter? I think of myself as a storyteller, so perhaps it is both unsurprising and self-aggrandizing for me to say I believe it matters most of all.

Human beings are a storytelling species – the ritual of storytelling occurs in every known culture and in every period of history. And if we take time to actually observe this ritual, we can get a sense of just how powerful it can be, and its great potential for shaping attitudes and prejudices.

First, the audience gathers. The gathering may be as small as one or two around the fireside or office water cooler, or as large as several million, in the case of commercially produced movies and television shows. Then, the social chatter ceases and is replaced by a sense of shared and focused anticipation, which sets the stage for the storyteller to begin. This dynamic (as far as I can tell), is unique to the human animal; lots of creatures gather in large groups for the shared activities of migration, mating, and the rearing of young, but the chatter and communication continues between small groups within that gathering: tweets and grunts, snorts, snuffles, and flashes of meaningful color. I've never seen a flock of birds, a school of fish, or herd of cows or horses become as still as a human audience. After the hush descends, the storyteller begins the tale. Then, if she or he is skilled enough, the magic (and that is really only thing I can call this) begins: the members of the audience fall into a trance-like state.

If you've been lucky enough to have ever been in the audience for a really wonderful story, you've felt this magic from the inside. You're no longer aware of the seat you're sitting in, or that scratchy tag in the neck of your sweater; the events of the story unfurl in your mind with such clarity it's as if you're there – inside the world the storyteller is creating for you. In a very real sense, members of the audience temporarily surrender their imaginations to the storyteller for the sake of a shared experience.

The fact that this ritual is both unique to, and universal within, human society is, I think, a sign that it is somehow vital to our survival as a species – and is probably connected to how we learn and how we understand our surroundings. My mother had a favorite saying: "When we read, we don't learn, we recognize;" she meant, I think, that everything we read is colored by the things we've experienced. But there's also a flipside to that observation: we tend not to notice, or give credence to, our own experiences until they are reflected back at us through stories. The Evangelist Christian who accosts me on the street with the promise to pray for me sees me not as I am, but as a character in the Gospel tales of Jesus. The "Santa's helper" in the elf uniform who thrusts a candy cane at me sees me, not as I am, but as a stand-in for Dickens' character Tiny Tim. And I could not easily contemplate writing disabled characters into my own fiction until after I joined in the disability community online – sharing my own stories, and perhaps more important, learning the stories of others; that's why events such as BADD are so powerful.

The question is, therefore: how should we judge the quality of the disabled characters in stories, either fiction or nonfiction? I think a good template to use as a starting point is the Bechdel Test, which has, in the last ten years, or so, been a useful framework for feminist critique of literature.

In 1985, Allison Bechdel introduced "The Rule" in her comic strip "Dykes to Watch Out For," a litmus test for judging the role of women in movies (and later, other forms of media). The power of this test lies in its simplicity, and also its broadness:

1) there are at least two named women
2) who talk to each other
3) about something other than a man.

This test makes no demands that the women in the story defy stereotype or are admirable in any way, and yet the fact that so few movies, comic books, and other mass media pass this test demonstrates how strong the bias toward male-centered narrative actually is.

So – I've been wondering for a while now: Is it possible to come up with a test to expose the common biases against the disabled in narrative? Simply pasting "disabled character" into the Bechdel test in place of "women" wouldn't work very well. The Bechdel test addresses the primary bias that women exist as accessories to men's lives. And, frankly, that doesn't really reflect the social barriers the disabled face. We may be a substantial segment of society, but we are rarely 50% of the population – often, we are the only disabled people within our nuclear families. So requirement 1 is out. And it is often assumed (whether rightly or not) that we live together in some sort of institution or group home. So requirement 2 is superfluous. And while it would be nice to have a disabled character with any speaking lines, whether they speak about their disability or ability specifically wouldn't necessarily counter any stereotypical beliefs.

And yet, whenever I'd see a disabled character pop up on a TV show, I could feel my jaw start to clench in anticipation of the same, tired, overused plot devices. So I knew there was something basic, and repetitive, going on… If only I could put what was bothering me into words.

Finally, this past winter, after watching one too many cop shows where a disabled character only appeared on-screen as the mute, and nameless, motive for a family member's crime, my personal litmus test crystallized in my mind:

1) there is a disabled character
2) who wants something
3) (besides revenge, cure, or death)
4) and tries to get it.

In the Bechdel test, having two women engage in any conversation on subjects other than men represents both the ability of women to form their own social bonds, and also a wide range of intellectual interests they are able to hold, all within the universal narrative element of "dialogue."

In the real world, we disabled often have to fight three primary cultural biases, each of which, I've tried to address in this test.

The first is the bias that discredits our ability for personal autonomy. That's why I want the disabled characters in my fiction to want something for themselves – it doesn't even need to be a big, powerful, plot-driving thing: even showing someone in the background of the crowd scene buying a newspaper, or flying a kite, would satisfy me.

The second cultural bias defines the disabled only in terms of being less than the culturally-accepted "norm." This is why I believe the third item on my list is important. So often in fiction, the disabled character is so embittered by their "lack" that they lose touch with their own sense of self-worth and moral compass – filled with rage and shame – and this reaction is almost always seen as "perfectly natural," and is never even challenged by any of the other characters in the story. So that the only "happy ending" can either be the erasure of the disability itself via cure, or the erasure of the character via death ("at least they're free from suffering, now").

The third bias in our culture is that the disabled are dependent, and in constant need of charity. And that's why the final requirement on my list is that the character makes their own effort to get what they want, rather than being there for an able-bodied character to rescue. This does not mean, however, that the character should be some type of super-Crip, and do everything themselves, but only that they take some initiative in getting their goals met, even if that's "just" to speak out and ask for help.

So… That's the test that I've come up with for evaluating the stories I create and consume. But I don't expect this to be a perfect litmus test – I do hope, however, that it's a useful starting point for discussion.

What do you think?

---

[E.T.A: Blogging Against Disablism Day 2013 archive ... So many articles to read! I hope to post a review entry sometime soon...]
capriuni: half furry, half sea monster in wheelchair caption: Monster on Wheels (Monster)
The link to the official announcement post is here: Blogging Against Disablism Day (and there you will also find links to previous years' archives as well as a link to a page on making accessible Web content, and language and such... all good stuff).

Check it out!
capriuni: Text: "I know where my towel is, But I can't find anything else." (Default)
So, as some of you in my circles may remember: Back in July of 2011, I wanted to write an entry for Plato's Nightmare / Aesop's Dream about an "Aesop's fable" my mother told me repeatedly from the time I was very small. But I couldn't find out any background on the 'Net, because (it turns out) it was a fable she herself made up, by splicing two different Aesop's fables into a single story, and then, she misremembered the origin, being convinced she read it somewhere (The entry is here: The Lame Man, the Blind Man, and the Donkey: a fable on the birth of a fable)

So: as of just a little while ago, I've decided that I will, in fact, write something for B.A.D.D., and that it will be about that Disability version of the Bechdel test I came up with... And I thought I'd start out with what I remember as the earliest "favorite quote" my mother had: one that she would recite to me almost every time she finished reading some particularly interesting something. Now, I could swear she had told me the quote came from Gloria Steinem:

When we read, we don't learn, we recognize.


And that struck me as a nearly perfect place to start my argument for why representing the less privileged people in our stories is so important. But I wanted to make sure I had the wording right... So I tried looking up the quote (or a paraphrase of the quote) on Google... And have come up with zilch... zip. Nothing -- either attributed to Steinem, or anyone else. Putting those keywords into the search box only gets me scholarly, and quasi-scholarly, articles on how to teach children to read (and to links of articles about how baboons can apparently learn to read words...

Does the quote ring any bells, or flick on any lights, for my circle folk? Or is this another case of my mother not recognizing herself as the source?
capriuni: half furry, half sea monster in wheelchair caption: Monster on Wheels (Monster)
And I'm not sure my heart is into doing it this year... For one thing, I'm still struggling with that Sword and Laser anthology story (The deadline is May 15; I'm working on it... hope to have a rough draft done by the end of tomorrow).

For another thing, I'd been planning, if I do write something for Blogging Against Disability Day, to put up a YouTube version... and I'm hating the new version of Windows MovieMaker -- they've taken out all my favorite title animations, and made the animations that remain inflexible, so you can't slow down the movement of the words to match the length of the clip. On the other hand, they've added new transitions and effects, and also a "pan" feature, so you can move over a single image... so maybe I could still make something vaguely interesting, and not absolutely fugly.

Anyway, if I do write something, it will either be:

1) a "rant" about the pernicious belief in the medical community that CP = mental retardation (which is hard because that so often comes across as "being intellectually disabled is being subhuman" which is a lie... but being misdiagnosed as ID is still horrible)

or

2) something about storytelling and that Disability Test I came up with, and why it's important.

And May 1 is coming up fast, and I have to decide even faster... Sigh.
capriuni: Text: "I know where my towel is, But I can't find anything else." (Default)
A link to Dave Hingsburger's post in honor of today: International Day of Persons with Disabilities: Three Stairs

(Begin Quote)
Later, much later. I stepped into a 'special school' for kids with physical disabilities. There was noise, noise, noise, kids laughing, kids fighting, kids racing pell mell down hallways. The noise was so distracting that it was hard to notice as you walked through the school, even from the old part into the new part that there weren't three steps. The school was accessible to itself, but closed off from the world up three steps.

No one ever asked me to consider.

Where they were.

Why they weren't there.

Who decided that they could be disposed of in other towns, other places.
(End Quote)

Here's the reply I left on that post:

Thank you, Dave. I will post this on my personal journals to signal-boost within my circle.

But I find myself asking:

"Why didn't I know this date was coming up (or that it even existed)?"

If I had, I would have planned, in advance, for ways to spread the word, and celebrate.

But I guess, in many ways, we are still not considered.
capriuni: "This calls for CAKE" with plate and fork (Cake!)
This is my entry for the October, 2012 "Disability Blog Carnival," hosted by Dave Hingsburger at Rolling Around in My Head.

And because this entry is written with the intent of being part of a larger, cross-blog conversation, I am going to allow anonymous comments (though screened) for a short period (Short = my comfort level).

This video now has proper closed captions



Full text of the poem: click here )

Footnote #1 -- The Hospital Psychologist Story )

Footnote #2: The protest letter story )
capriuni: Text: "I know where my towel is, But I can't find anything else." (Default)
There are many more posts up for Blogging Against Disablism Day, but here are a handful that my mind keeps returning to. And I couldn't help punning on the "5 good things" theme

1) "I've never met anybody who wasn't important, before."

2) Truth is

3) It gets inside our heads

4) Toppling Transactionalism

5) Recall to Pride: Blogging Against Disablism Day, 2012

And here's a link to the whole archive: Blogging Against Disablism Day -- 2012
capriuni: Text: "I know where my towel is, But I can't find anything else." (Default)
See? I didn't just imagine it: "But these things are monsters" (The Etymologiae of St. Isidore)

The post is shorter than I was originally expecting and took longer to write than I expected.

(I decided, at the last minute, not to include the full lyrics of Child Ballad #45 [think it's 45], nor my rant to parents along the lines of "Your 'greatest wish' is for your child to be normal? Really? How sad. Don't you remember all the stories of wasted wishes, and the dire consequences of foolish wishes?" That way, I leave those thoughts available for future posts).

I include a link to the full BADD archive in my post, too.
capriuni: Text: "I know where my towel is, But I can't find anything else." (Default)
LiveJournal seems to have vanished off the edge of the Internets. Whether I try to link to it through Google Chrome or AOL/Internet Explorer, I get a variation of the same message: "Are you sure you're even connected to the Internet? Is your router working? Your modem plugged in? Anyone? Beuller?"

Since I can connect to every other site I want, I'm sure the answers to all those questions is: "Yes."

In the meantime, today is the first anniversary of my blog Plato's Nightmare / Aesop's Dream. I ... have not kept up with it at the pace I'd originally imagined (which was one post a week). Instead, I end up having skipped whole months entirely... If I work quickly, I may be able to get a quick little post about the story of the Pied Piper of Hamelin up before midnight -- in nearly all versions of the story, from the Grimms' mash-up of various local German folk versions, to Robert Browning's 19th C. verse, there's at least one child left behind to act as witness and storyteller for the adults: the ones who tried to follow the others, but were unable to. In Browning's poem, it's a lame boy, who was just one step too slow, and the door to the promised paradise closed before he could step through.

This is, in some ways, a strange, "reverse" of the original meaning of "Monstrum" from the ancient Romans: instead of the deformed, ill-fitting child being a Sign-in-Flesh of Disaster-to-Come, these children are a living reminder to all who see them of the Disaster-that-Has-Been.

And once that post is written, I'll start work on my piece for Blogging Against Disablism Day (B.A.D.D), which will be hosted by the "Diary of a Goldfish" blog, next Tuesday. The link to the introductory post is here: http://blobolobolob.blogspot.com/2012/04/blogging-against-disablism-day-will-be.html

Anyway, when I first started "Plato's Nightmare," I told myself that if I kept it going for a year, I would look back and think about whipping a selected portion of posts into parts for a coherent whole, and maybe trying to get that whole published as an E-Book.

Y/N?

Anyway, since I don't have the volume of work I was expecting I'd have, by now. I'm wondering if I should put that project off for a little while...
capriuni: Text: "I know where my towel is, But I can't find anything else." (Default)
So, May first is coming up. Beltane for the Pagans, Labor Day for union workers (everywhere but the U.S.), and for a large-(ish) population of Persons with Disabilities Online, it will be the Eleventh Annual B.A.D.D. [Blogging Against Disablism Day].

Before I give my reply saying announcing where I'll be posting my entry, I have to decide what I want to post.

I started Plato's Nightmare / Aesop's Dream specifically because of B.A.D.D..* So I could post there, again, but only if I write something that fits there. And I'm drawing a blank, right now on a story or other piece of literature (before the start of the Great War in 1914) that's I could use to discuss in broad strokes the role that Disability, itself, plays in our world today.

But I'm having ALL THE THOUGHTS about what original of art or prose, or poesy I could write on the subject of Ableism/Disablism. Right now, I want to go find a mountain top and a megaphone, and preach to all the parents:

"You are only allowed to have ONE 'Greatest Wish' for your child, ever, when that child is born. Do you really want to waste your wish on normalcy?! That's it?! That's all?!"

But if I post such an entry, it would be posted here, not at "Plato's Nightmare." ... And I'm feeling kind of iffy, at the moment, about strangers traipsing in with mud on their boots.

And meanwhile, I'm literally falling asleep at my keyboard, and can't find any more of what I want to say, so I'm going to stop now, and go to bed...

But if I write something new and modern like that

*I actually started it about a week earlier, so there could be some content there already when people visited for the sake of my B.A.D.D entry 2011: The Lame Smith God, and the two sides of "myth"
capriuni: half furry, half sea monster in wheelchair caption: Monster on Wheels (Monster)
So -- I'm thinking of creating a thing to share about bipedal/mobility privilege -- as a YouTube video and, also, maybe a Flick'r slideshow, and also a series of all-text posts-essays. I figure, done once in one format, should be relatively easy to convert to another (especially since the "video" will be made from still images, anyway, and those images will mostly be panels of people talking with speech and thought balloons)...

So: If I break this up into a series, of maybe three minutes of video / 600 words of text sized chunks (guesstimate):

Question 1:

A] Should I devote the whole first chunk to what I mean by "privilege" and why I think it's a good thing, but people have hang-ups about it, 'cause it's also a complicated thing (and some of what makes it complicated, including the privileges I do have, and those I don't, and how they balance out)?

B] Or should I just touch on my chosen metaphor for privilege (I.E. VIP Pass and the Red Velvet Rope) at the beginning of the first chunk, and leave the nuanced discussion of privilege-in-the-abstract for another time (so the first chunk will have some talk of privilege and one or two examples)?

C] (Facetious) Does anyone else have the urge to spell "privilege" with a 'd', same as "knowledge"? Or is that just me?

Question 2:

A] Should I group privileges together by theme (I.E. "architecture," "transportation," "education and employment," "public assumptions and manners")?

B] Or should I mix-and-match?

Question 3: The list of privileges I came up with on December 10: http://capriuni.dreamwidth.org/608976.html had 21 items, 3 of which I "borrowed" verbatim from "B-tch on Wheels" blog (I did not reword those at the time because I was working quickly; I will reword them if I include them this time around).

A] Is 21 items a good number (leading to a series of maybe five or six videos)?

B] Or is it too much (depending on how you look at them some are redundant)?

C] Or is it too short?

Um, yeah. That's all of what I'm wondering at the moment...
capriuni: Text: "I know where my towel is, But I can't find anything else." (Default)
In the words of Dave Hingsburger, who proposed this day:

(Quote)
I wonder if we here, in this little community, can start something that might grow. I propose the 'International Day for Mourning And Memory of the Lives of People With Disabilities'. The day would be one of remembrance of those whose lives were not celebrated or remembered, the lives of those who were slaughtered by care providers or brutalized to death by bullies. It would also be a day to remember the entire disability community - the elders who came before and who made the world different and better. It would be a day where a moment was taken to pause and reflect and remember.
(Unquote)


Yesterday, I told myself that I would commemorate this day in the way I best can: by posting something in this journal. Today, I woke up stumped, and drawing a blank. I don't know of anyone in my family who was locked away in an Institution for difference (and that's kind of the point, isn't it?). It's very hard to remember an mourn anyone in the abstract -- people who are left out of history, and whose names are erased.

I know (based on my own vague, toddler-rooted, memories, filled in by stories my mother oft repeated), that I was almost among that number. But I grew up, by the good luck to be born to an iconoclast, mainstreamed, before (Quote/Unquote) "Mainstreaming" became codified and Institutionalized in its own way.

And then, I remembered this snippet from British Medieval History that I found and posted last October: from this website: The Sheredes Project: Spitalbrook Hospital):

(Quote)
The Living Dead

In the Middle Ages, if a person developed leprosy, they would be declared legally dead and lose all their possessions. They would have to leave their family, and go to live with other lepers in a place like the hospital at Spitalbrook. In Medieval times, this would have been outside the village of Hoddesdon.

Lepers were given special clothes, a begging bowl, and a bell or wooden clapper, so they could be clearly seen and to warn other people to keep their distance. They were given these in a ceremony that was modelled on the service for the burial of the dead and, in many places, the leper was actually required to stand in an open grave while the ritual, that marked them as outcasts from society, was performed above their head.
(Unquote)


And it occurred to me that this is what institutional life is like -- whether or not it's actually inside the brick and mortar walls of a "Facility."

'Special-Ed' students are taught under the same roof as 'normal' students, but they're segregated into 'Special' classrooms, and are 'exempt' from going to all-school assemblies. So they and the 'normal' students never cross paths.

Entire suburban developments are built where only the houses that wheelchair users live in are actually wheelchair accessible, and houses that have ramps are "improved" by having them dismantled.

Rather than make all public transit accessible, and properly train drivers, municipalities provide "para-transit" services, where wheelchair users have to call and schedule a ride days in advance, and they're only allowed one able-bodied companion each to ride with them, in the role of an aide.

----

In twenty-first century North America, we're no longer marked as outcasts by ritual and costume, the way we were in medieval England. But we're still outcasts -- still living in a parallel world, skimming along the edges of Public Life, and not fully a part of it. Like ghosts, or like Scrooge on his Christmas Eve travels, we observe and hear, but are neither seen nor heard.

Institutionalization is in the mind and the attitude, not within walls.
capriuni: Text: "I know where my towel is, But I can't find anything else." (music)
The last time I wrote a song (I think, if I recall correctly) was just about three years ago (I posted the first draft of it here: A new song, what I done finished, today:.

The chorus contains these lines:

"Well, I won't be your metaphor
For Grace, or lack of Grace,
'Cause I am simply human,
In this complex human race." [*]

....

But over the last few days (Weeks?) I've had this growing urge to write a new song... using the Metaphor of Monsters to describe the Disability Experience -- maybe somehow adapting the metaphors and imagery of this Monster Ramble into something with form, and a beat.

Er... Oops?

[*] That was in response, mainly, to Si Kahn's "It's not just what your born with," where he compares the Angelic-Disabled-People-Who-Have-So-Much-to-Teach-Us to Those-Evil-Able-Bodied-People-Who-Are-Wealthy-and-Corrupt; it's an okay song, until you get to the last verse. Then it makes me want to throw things.
capriuni: Text: "I know where my towel is, But I can't find anything else." (Default)
I spent yesterday and today writing this piece for "Blogging Against Disablism Day;" It also happens to be about the (Greek) Smith God Hephaestus, so I figure it's doubly appropriate for Beltaine.

The Lame Smith God, and the Two Sides of "Myth."

I wrote (What I thought was) most of it last night. I almost published it right then, but decided to sleep on it, first.

Then, when I woke up, I realized I really did want to expand it in order to talk about how invention of technologies (Hephaestus's sphere) and physical disability really are connected. And so that meant hunting down more links (and almost getting caught up in reading them all, 'cause oh my frog, so interesting).

And then, I was rereading my piece, and that meant fixing typos, and shifting paragraphs around. And now, there's a growing archive of other great articles to read. But now I am starving, 'cause I haven't eaten anything since breakfast, and my eyes are a bit bleary from staring at this monitor. So all that juicy reading (and vlog-watching) will have to wait.

Happy Happy Joy Joy, All!

[Eta: A link to that growing archive, so I can come back and read bits and pieces at my leisure: BADD -- 2011]
capriuni: Text: "I know where my towel is, But I can't find anything else." (geek god)
So, I'm starting to work on my piece for Blogging Against Disablism Day:

Blogging Against Disablism Day, May 1st 2011

And (Spoiler alert!) it's going to be about Hephaestus (pictured), and -- modern -- people seem to assume that when the Greeks said "lame," they simply meant "walking with a bit of a limp. Not really crippled, like we think of it today."

Well, years ago -- More than 5, less then 15 -- I remember there was a documentary series of hour-long (maybe 2-hour) programs on PBS tracing the history of art from cave paintings to television advertisements, talking about how art is used in a culture, etc.

Anyway, in the episode on Ancient Greek statues, there was an interview with a conservator dude who noted that the bottom of the statues' feet were compressed, as if actually weight-bearing. And this was a clue to him that the statues were made from plaster life-casts of actual people, because if you're molding the sculpture from clay, you wouldn't need to put accurate details on the bottoms of the feet, because those were going to be stuck to the pedestal, anyway.

What this means, of course, is that the only people available to be models for statues had to be able-bodied enough to stand for long periods of time without tiring.... So you never actually had any crippled people to model for the crippled god. Now, one thing you could do, if you were building a bronze statue of Hephaestus, and you wanted to show him as deformed, you could turn the foot molds around backwards before you attatched them. And that's how Hephaestus is shown to be crippled in some statues, and vase paintings (inspired by statues -?-).

I so want to cite this in my BADD piece. Because it's the fact that all the statues of Hephaestus look so able-bodied that people today don't believe the Ancient Greeks knew what they were talking about. But I've trolled the PBS archives for a transcript. ...And it's nowhere to be found! It's like it never existed. Argh. And I don't want to use this tidbit without being able to point people back to the original source.

Okay, I'll take a deep breath. Go eat something with protein. Maybe start up a pot of rice, for this week's meals, and try again.

Still...

[ETA: it may have been longer than 5 years ago, now that I think about it -- Maybe it was right around the time of the first [livejournal.com profile] naarmamo?]
capriuni: footnotes are where the cool kids hang out (geek pride)
Remember, yesterday, I posted how another Blogger for BADD is writing about Disability in Ancient Greece? Well, I sent her a private message, and today, she emailed me a link: Toward an Archetypal Psychology of Disability Based on the Hephaestus Myth.

Around about this passage, my eyes started getting teary:

(quote) Bitter Hephaestus does not intend to stay hidden away in an underground cave forever. Stubborn anger toward his mother inspires him to seek revenge. These "negative" emotions engender the courage that is necessary for the disabled outcast to claim his rightful place in the world.

[snip]

The disabled deity refuses to play the role of the passive victim. Instead he is an active creator in forging his future place in society. Hephaestus' revenge is accomplished in such a clever and artful way that, in the end, it is enriching for the entire Olympian community. (unquote)


And on a lighter note, yesterday also gave me this to read, from Rolling around in my head: Who's confined?:

(quote) When I was pushing out of the restaurant, one little boy, who'd been watching the girls ride on my shoulders and was now watching Ruby sail out of the restaurant, said to his dad, 'Dad, why don't you have a wheelchair too?' I wanted to turn and say, 'Now be nice to your Dad, poor guy is confined to walking.' (unquote)
capriuni: Text: "I know where my towel is, But I can't find anything else." (geek god)
Blogging Against Disablism Day, May 1st 2011

My reply, saying "I'm in!" was #15. So "Plato's Nightmare" has taken one more step toward realitidom in the blogosphere. For all its bullying and plaigerism, and dogpiling, for some reason, I want to be a part of it.

Oh, and one of the people who replied before me is writing a college essay on disability in ancient Greece. I sent her a private message saying I'd like to pick her brain one of these days... :-)
capriuni: footnotes are where the cool kids hang out (geek pride)
So -- I just realized, last night that Blogging Against Disablism Day is just about three weeks away.

Blogging Against Disablism Day, May 1st 2010

Last year, the official announcement didn't come until the last few days of April. Would it be very bad form if I replied to the announcement post from last year, and asked: "Are you doing it again, huh? Huh -- are you?!" or only slightly bad form?

Also, since the moderator who runs this blogfest is doing so from a Google-Blogger platform, I was reminded me of my dormant, died-in-its-infancy blog. At the start of this year (or was it the end of last year?), I got the notion to start over, with a slight shift in perspective, that maybe I could have more enthusiasm and energy for.

And just within the last two hours, I got the idea that maybe I could use B.A.D.D. as a launching event (posting an intro post a few days early, then have my B.A.D.D. post be the first real content), and thus, maybe, start it off with a wide-ish audience who are actively looking for new blogs to read, many of whom are on that one platform, so it will be easier for us to connect to each other. {?????} The idea being: if I know I have an audience greater than one, I'll be more inclined to actually write and post there, regularly.

But: I'd still like to have the primary focus of the blog, in general, be storytelling and folklore (and mythology, proverbs, and the like).

So: the idea came to me to make my blog's focus: "Disability as portrayed in the stories we tell." Sometimes, the emphesis will be more on disabilities, and sometimes more on the stories. But whatever, the stories will be older ones, rather than the more recent, self-consciously "About
Disability" stories. I might go as far forward in time as 100 years ago (so I could include personal favorites like The Secret Garden and The House of Arden duology, and still have an excuse for not going anywhere near The Ship Who Sang).

And also, with "Disability in Folklore" at the center of my focus, then I could also, sometimes, just post a pure Ableism rant, or just post a favorite story because it's a favorite story, even if it doesn't have a simpleton, hunchback, or blind person in it, and still be "on topic" for my blog...

Right? ...I hope so.
capriuni: Text: "I know where my towel is, But I can't find anything else." (Hephaestos)
Yesterday, I wrote my Blogging Against Disablism Day(s) post.

Today, I've been reading.

Here's the main gathering-it-all-together post: Blogging Against Disablism Day: 2010

Here are a few of the posts I've read (so far) that I really like:

Dear Author: please don't heal me (a review of a current fantasy novel, and the trope of the "miracle cure" in fiction)

If only I'd *try* (dealing with people who don't believe you, when you tell them what your limits are)

Fear and Othering (Asperger's and the media)

Do you need assistance? (good, basic, advice on the right way to offer help)

I live in a marginal constituency (Disability Rights as an election issue ... or not [specifically, the upcoming UK elections])
capriuni: Text: "I know where my towel is, But I can't find anything else." (Default)
Blogging Against Disablism Day, May 1st 2010


And: Why is the "Fixation on Cure" such a Morbid thing?

The Perennial Preamble, especially for the (temporarily) able-bodied who may be reading this:

Different disabilities are different, even though Society-at-Large lumps them all together under a single label. I have cerebral palsy; here is an explanation of what that means.

My life experiences and troubles are as different from those of someone who is Deaf (or blind), or with spinal chord injury, or chronic pain, or [...] as they are from someone who has been able-bodied all of his or her life. But, for all our differences, we do have one thing in common: Society-at-Large lumps us together into one club that none of us chose to join, and looks upon us with the same pitying and othering attitudes.

So, on days like this, we band together with more-or-less unified voices and say: "Ahem. Stop it."

The Body of This Entry:

One of my quirks:

When I fall in public, when there are witnesses, I laugh --hard. When I fall in private, I can swear up a blue streak that would make a truck driver blush. Why the difference? It's something I learned, and must have learned very early in life:

When you fall in view of the public, that public tends to panic (which is not at all helpful) -- unless you give an unmistakable sign that you are Fine, and Unhurt. Busting a gut, and dissolving into a puddle of giggles is one such sign. And so, as soon as I feel my center of balance slide out of center, I start giggling even before I hit the ground.

This is not unique to me; when I was a junior in college, I shared a dorm with another woman with C.P., and we occasionally swapped stories of how people panicked whenever gravity took over. One of her stock replies was to look up at the panickee and say: "... You know, He's my God, too..." We even considered compiling an anthology of Funny Falling Over Stories. We had a title all picked out: The Gravity of the Situation.

In the intervening years, I've come to understand that, in general, it's more traumatic to watch someone else fall than the actual experience of falling. If you're the one falling, all your attention is taken up with the process of getting up again, and dusting yourself off, so there's no room for angst. But witnessing someone else's pain (or what you imagine to be pain) allows you the luxury of all sorts of angst, and pity. And, like the sensation of adrenalin, these feelings can be addictive.

I think this is one reason why those with visible disabilities (especially disabilities of mobility impairment) get the majority of public attention, and why these disabilities are reacted to with an equal measure of pity, revulsion, and adulation which reminds me (now that I'm writing it out) of the Madona-Whore trope that women are routinely confronted with. But I think that's a topic for another day.

The iconic example of this pity-revulsion reaction, for me, was Christopher Reeve's speech at the Democratic National Convention on August 26, 1996 (and it's a bit sobering to me to think that many of the people reading this may be too young to remember this event). Maybe, someday, I will have written about this often enough that I will have nullified its influence on my mind. But I'm not there, yet.

At the time, Christopher Reeve was most recently in our minds as the image of Superman -- The Man of Steel. And he fell, and broke his neck, and so we were all confronted with the fact that Invulnerability is, like the character of Superman, a fiction. And so, he became even more iconic and influencial a public figure than he ever was walking the red carpet of his movie premiers. And he became the face and the voice for the "Drive for the Cure." And he was invited to speak at the Democratic National Convention in order to drive home the importance of health care, and health care research.

As he drew near his conclusion, he said:

(Quote) Research can provide hope for people who suffer from Alzheimer's. We have already discovered the gene that causes it. Research can provide hope for people like Muhammed Ali and the Reverend Billy Graham, who suffer from Parkinson's. Research can provide hope for Americans like Kirk Douglas, who suffer from stroke. We can ease the pain of people like Barbara Jordan, who battled multiple sclerosis. We can find treatments for people like Elizabeth Glaser, whom we lost to AIDS. And now that we know that (nerves in) the spinal cord can regenerate, we are on the way to getting millions of people around the world, millions of people around the world like me, up and out of these wheelchairs. (Unquote)


"[U]p and out of these wheelchairs." That was the whole thrust of Christopher Reeve's public drive for research into spinal chord injury: that he would walk by his 50th birthday -- the elimination of the visible evidence of disability. That speech had, as its subtext, the notion that it's our responsibility, as disabled people, to reduce the angst of those who might witness our falls. It reinforced the attitude that to come to terms with "living with a disability" is defeatist.*

But the thing is: that the goal of Absolute Cure, as noble as it sounds at first hearing, is as fictional as Superman. Improving the lives of the disabled by trying to eliminate the existance of disability is like trying to destroy the mythical Hydra by decapitating it -- every time you chop off one head, two more grow in its place. As science and healthcare improve, as rates of mortality decrease, rates of disability increase. For an example of this, just compare the casuality rates between the Vietnam War, and the Wars of Afghanistan and Iraq.

Research is needed. Improved healthcare is needed. But to pin all your expections of improved quality of life on the perfected treatment of disease is like promising "Always Jam Tomorrow, Never Jam Today."

This fixation on cure is understandable, perhaps, because it stems from an instinctive fascination with (and fear of) pain. But it's morbid because it draws attention away from the real situations lived by real people right now.

When I slip and fall, I do not need you to squeal and call 911. But I might like a hand up. And then, I'd like some room to continue on my way.

Thank you.



*(Note -- this seems to be the response only to visible disabilities. If you suffer an invisible disability, you're expected to buck up and deal with it quietly).

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capriuni: Text: "I know where my towel is, But I can't find anything else." (Default)
Ann

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