Notes, Notings, and Common Refrains

Ugh.

I can't actually remember the last time in my recent life that I've had an actual, random, viral something in my head and throat.

I've had migraines and allergy attacks, but nothing catching for years.

The last time I got really sick with an infectious thing was in 2002, when Dad and I went to see the movie Gosford Park in the theater, and I used the public restroom. And I came down with the flu that night (believe it when the experts tell you that the difference between a cold and the flu is that the flu hits hard and fast, and gives you a fever, and makes you hurt in your bones.)

This is not that.

( cut for 'Ewww, gross!' )

I hope I'm in condition to shop tomorrow, because I need to refill my pantry.

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...

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.

The Steadfast Tin Soldier (The disabled would be happiest 'with their own kind')

With an Addendum: in that post, I mention I wheelchair using guy that often came 'round my college (his mother worked in Admissions, iirc), and that rumor had it he had recently been an actor with Tom Cruise in Born on the Fourth of July, which had just come out.

At the time, he was studying for his fourth attempt at the Bar, to become a lawyer.

... After I wrote my post, I decided to look him up on IMdB.com, to see if I could recognize his name, and if he had, in fact, been in the movie. Sure enough, "Paraplegic #1 (Miami bar)" was listed has having graduated from a Newburgh, New York high school... And this guy was a Newburgh native. So there, I was reminded that his name was Kevin (McGuire).

And from there, I Googled him.]

Turns out, he's got his law degree now, and is CEO of his own company, as a consultant for corporations on ADA law.

Good on ya, Kevin!

(I still doubt we would have been a "good couple," even if we do both use wheelchairs).

His Website: McGuire Associates

It wasn't this bad, four years ago, was it? Back then, the Networks didn't break into the regularly scheduled local news to give the results of the Iowa Caucuses as if they were the actual presidential election, did they?

Damn! This is going to be a long year, isn't it?

*sigh*

(I'm typing this with a cat firmly anchored in the crook of my right arm. There is no dislodging her)

57 minutes.

I've had this vague thought that I should write something New Yearsy today. But to tell the truth, I've been drawing a blank.

55 minutes.

Things I've been thinking about instead:

1) Douglas Adams and Richard Dawkins. They were sort of a pair when it came to speaking about their atheism -- I think Dawkins invited Adams to read from HHttG at one of his lectures, iirc. So I've kind of been puzzling through why Dawkins makes me clench my jaw after reading through three successive paragraphs, and Adams fills me with warm fuzzies. And I think I've figured it out: As a writer of speculative, humorous, fiction, Adams recognized that even if a story were untrue it still has worth, even if it's a religious story.

2) I'm really liking the way the series Chuck is winding up its final season. The Intersect, the hi-tech pseudo-scientific, quasi-magical plot device which has driven everything in the previous four seasons has been completely written out (saying how would be spoilers), but the story continues without it, based on the characters (who'd of thunk it?), and what they've learned and how they've changed because of the Intersect. Even though it's not there, now.

Really. Characters who are written as people who can be interesting even without the hook that got the show made in the first place. Wow.

I'm going to keep my eye out for this writing team, to see what they come up with in the future. Because that? is something every genre of series TV needs.

38 minutes.

3) My monster bear. That's what I've been working on this weekend. I'm working from the smallest, fiddly pieces up to the large central torso. So far, I have the snout, ears, and one arm sewn. The arm is... a lot skinnier, turned right side out, than I thought it would be. The main body is a "bright" maroon (not bright, bright, but vivid, and more red then blue) and for the highlight color (inside the mouth, the inner ears and inner arms) is gold-ish (recycled sweatpants that I first bought for my second attempt at my freshman year of college ... 25 years ago?) So my bear will be a mix of new and old. I hope the body won't turn out as proportionally skinny as the arms did -- or at least, that one arm.

27 minutes

4) 2011 was a mixed bag. Emotionally, I think I was just sadder than my normal average. But I did some / am doing some nifty stuff (Plato's Nightmare / Aesop's Dream, my Zazzle store)

5) There is a New Year's Carol (which was considered nostalgic and old fashioned in 1647) with this as a second verse:

And now, with new years gifts, each friend
Unto each other they do send;
God grant we may our lives amend
And that the truth may appear.
Now like the snake cast off your skin
Of evil thoughts and wicked sin,
And to amend this new year begin
God send us a merry new year.

(To the tune of Greensleeves)

I wish New Year's was the Big, Gift-Giving Holiday, instead of Christmas. Because it's a (mostly) secular day; even cultures with different Official New Year days (Chinese, Jewish, Persian, etc.) recognize the Common Era calender, for business, if nothing else. So it's got the energy of a global cultural push behind it. And people could exchange gifts without wondering what holiday name to tack in front of it, and worry if they're using the wrong one.

And that global energy is one reason why the New Year (9 minutes) is a bigger, more emotional holiday for me, personally. But, because of all the local emphasis on December 25, nearly every one else around me is burned out just when I'm starting to want to sing.

(I guess this turned into a New Yearsy post after all.)

6-something minutes...

The other day, I was looking around YouTube for a Douglas Adams interview clip where he said he hated dystopian fiction, because we what we create in reality comes out of what we imagine. And I wanted to cite that in a post talking about why I like (most) "Holiday" stories on TV -- both the annual specials that are aired each year, and the Holiday themed episode of regular series.

But.

I could not find it.

What I did find was an upload of an hour-long documentary interview with him, for the South Bank Show, from 1992 (in six parts).

What's extra nifty about it is that while he and the interviewer are in the sitting room having their conversation, Adams's fictional characters are milling around the other rooms of the house, listening in, and rolling their eyes.

This is Part 5, and it's the one that makes me the happiest of all, because this is the bit where Douglas Adams talks about how other creatures besides humans are also intelligent, and their perceptions of the world are just as valid as our own, and this is also the bit where Ford Prefect explains to Arthur Dent how the relationship between Authors and Characters work...

And what he says reminds me an awful lot of what Dad and I would talk about, late into the night. And so it kind of fills that Lonely Hole I've got, right now.

So I thought I'd share it:

( transcript to follow, bit by bit, probably )

(Cross-posting; this is what I wrote in disability, last night):

It occurred to me recently that the whole use of "Crutch" as a derogatory term belies how many people assume we're all faking our disabilities: "I bet they could walk if they really tried; they're just too lazy to carry their own weight.

Compare that with Ladders as a metaphor: climbing the ladder of business success.

And really, crutches are more like ladders than they are not: both are tools to help us get higher than we're capable of, under own own power: ladders help us surmount a steep barrier, and crutches help us get our noses out of the mud. They even kind of look the same, if you think of the hand grip as a rung.

---

And here are some further thoughts I've written as replies in discussion:

(Further on the idea of ladder as something positive, even though "climbing the corporate ladder" is often used to criticize someone's brutal ambition):

Yes, in that sense, "climbing the corporate ladder" is often talked about in a negative way, but there's also often an air of admiration about it, at the same time-- of the person's energy, ambition, cleverness, and so forth. And even when someone is criticizing the climber, it's never the ladder that's seen as the negative thing, in the same way that crutches are.

(In response to the point that most people think of crutches as temporary, to be used only while an injury heals):

What bothers me is that whether or not the need for crutches is permanent or temporary doesn't matter.

Casting them in a negative light belies the bias that the crutch-user's judgement of their own abilities is not to be trusted, and the Able-bodied Authority (or even stranger) has the right (and duty) to chastise and "reeducate" them.

(The idea that just came to me, about how I can help change things):

I'm going start referring to them as "hand ladders" (like handsaw, or hand drill):

"Excuse me, could you help? My hand ladder fell over, and I can't reach it."

"Your what?"

"My crutch -- you know -- my hand ladder." And roll my eyes as if it were obvious.

It could be quite fun spreading a little linguistic chaos that way. ;-)

Mary's Child: The Privilege of Speech and Human Identity

...In which I finally get the injustice I witnessed, aimed at other kids with C.P. who can't speak, off my chest... After nearly forty years of only talking about it privately.

That injustice is the whole reason I made my "Grah" icon...

(For the benefit of folks viewing from the LJ side: )

Okay, which story should I do next, right before Christmas -- The Steadfast Tin Soldier (The soldier is Special, 'cause he only has One Leg, and he's the Bravest of All), or The Ugly Duckling (because of how it frames Difference Within the Family, and how it's used to "comfort" children who are going through illness and/or disability: "But if you're brave, and soldier through, you will Grow Out Of It, and be handsome and admired." Also, I think it was the trope source for "Rudolph, the Red-nosed Reindeer," but that latter one is outside the scope of my blog)?

( Lyrics from sheet music in the Library of Congress )

There are lots of videos of this song on YouTube, but this is the one with most clearly enunciated lyrics that actually match the lyrics on record in the Library of Congress; the point of greatest variation among the versions seems to be the excuse Gilhooly gives when he's pressed to take seconds. I think asking for the recipe (receipt) is the most credible as, a) it passes for enthusiasm, and b) it gives you the info you need when you call the poison control center, later. >;-)


(Video is just a repeating slide show of generic Christmassy images)

Since Christmas traditions had nearly fallen out of favor and/or living memory by the time Dickens wrote A Christmas Carol in 1843, and this song was published a mere 40 years later, I can't help but wonder if this is one of the oldest in the tradition of Christmas Novelty songs, that mock the sentimentality and sacredness of the season...