jesse_the_k: Alan Cummings, all glammed up in blue eyeshadow and filmy red dress vamps in lime green room under the words "drama quee (Alan the drama queen)
Apologies if you've been looking at my journal this afternoon.

I have been cluelessly dinking around with the styles, attempting to make it look the way I want.

I have no wizzywig editor, and NO IDEA what I'm doing.

If any reader cared to hold my hand on this, I would be exceptionally grateful.

/diving back down the rabbit hole.
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Default)
Greetings, o wise ones

I've poked the standard free searches available to me and haven't found out who first used the words "sex object" to describe how patriarchal culture defines women as nothing more than a being with whom to have sex.

I'm looking for the coiner of phrases like:

He whistled at me then pawed me like a sex object because I wore a skirt

He asked my husband where he worked; he asked me how many kids we have. I hate that kind of sex objectification.

Feel free to signal boost!
jesse_the_k: Well nourished white woman riding black Quantum 4400 powerchair off the right edge, chased by the word "powertool" (JK powertool)
The forecast was "1 − 3 inches" but the reality seemed more like 4.5. At any rate, I dragged my butt, late, spinning and swerving, to the bus stop. After ten minutes I called to see what was up. Nothing firm was promised, so I backtracked two blocks to another line. The bus arrived and was dropping the ramp when I realized I was stuck. I wasn't going to be able to move out of the ramp's way.

Then something so pleasant and organized and positive happened!

I waved the driver on; one of the descending passengers asked if she could help. Oh yes she could indeed. I gave her the "bullet" for helping-on-snow ) and she followed every instruction. After the first try, a guy stopped by and started grabbing for the handle and telling me what was wrong with my wheels. I let him know, calmly, "I've been driving this thing for twenty years so I'm pretty familiar with this situation." He did the universal sign of "no harm, no foul" (backing up and rotating his upper arms so his hands were head-high, palm out) and wandered away.

So Stephanie (we traded names later) gave me just the right traction and I was free of the now-icy bus stop.
"How will you get home?" she asked.
I said, not really knowing, "Oh, I'll figure it out somehow."
She replied, "I live just here (pointing nearby), can I accompany you home?"
I got a clue and realized that a) she was exhibiting all the signs of a sensible person and b) if I got stuck away from the main street I'd be really stuck.
So we s/trolled down to where I could see my tracks, and waved goodbye.

So that was truly good news.

Why can't I swim to the pool?
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Default)
There's been some loud stuff happening.

[ profile] ThomasMonopoly put all his eggs in the Google basket. When Google arbitrarily suspended his account, he was screwed.

[personal profile] skud, a dynamo of open source goodness who worked at Google for a while, has just been suspended from her Google+ "field trial". Her crime? Having one name. As she explained in her customary clear, insightful and funny manner in the Geek Feminism Wiki, any entity demanding "real names" from its users is counterproductive.

I have a shining example of how Skud is successfully known by that one name. Two WisCons ago, Skud submitted a panel description. The program chair asked me, "This sounds like a cool idea, but I don't know the person who suggested it--proceeded to mispronounce the name that's on Skud's charge card. "Oh, don't worry, that's skud!" I replied, and all was well.

Which is why I am happy to say, along with hundreds of other people around the world: I Know Skud!

July 22, 2011
Jesse the K holds an "I know skud" button
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (WLKR SUX)
Because I'm a worrier, the last few months have been hard for me personally. My family's bequest has meant I'm somewhat directly insulated from the impact of Wisconsin's conservative revolution, but many of my friends and colleagues aren't that lucky.

People with disabilities interact more with government. We are more likely to be poor, and therefore more likely to need the welfare system (living expenses, housing, food discounts, medical care).
Only comprehensive, government-wide action can undo the decades of systematic oppression documented in the prelude to the Americans with Disabilities Act.

The Disability Advocates Wisconsin Network provides a detailed yet understandable accounting of how people with disabilities are going to be affected in so many ways by the budget just passed.

I bring up this list because it neatly reminds us all that "disability issues," like "women's issues," are pretty darn broad.

Are you wondering "Who's ALEC?" The American Legislative Exchange Council was founded in 1973 by Henry Hyde, Lou Barnett, and Paul Weyrich. In brief, they're a group of policy wonks who develop model laws based on the values they hold dear: absolute free market capitalism, elimination of governmental regulation, deployment of public-private partnerships wherever possible. Wm Cronon, a UW-Madison history professor explores in greater detail on his web site.

I bring up ALEC because the misery we're experiencing may be coming to a state like you -- and it may be letter-for-letter what we've been protesting against. Informed is always a good look on a radical.
jesse_the_k: Ultra modern white fabric interlaced to create strong weave (interdependence)
WisCon 34 will feature an Apocalypse Jeopardy game, where teams of great minds will demonstrate their knowledge of end-of-the-world facts, minor and momentous.

I hope you'll take a few minutes to contribute your favorite apocalyptic morsel via the following poll. Anonymous posting is on, so be as outrageous as you're inclined. Answers are hidden so nobody will know you're the last dog on earth.

Poll #2791 Harvesting the End of the World
Open to: Registered Users, detailed results viewable to: Just the Poll Creator, participants: 7

OK, there's this really cool

4 (57.1%)

short story
0 (0.0%)

0 (0.0%)

0 (0.0%)

0 (0.0%)

0 (0.0%)

2 (28.6%)

other, detailed in comments
1 (14.3%)


created by

where this happens:

(There's a parallel poll happening at my LiveJournal; answer wherever you please).
jesse_the_k: Ultra modern white fabric interlaced to create strong weave (interdependence)
I seem to be ready to rant about dependency, interdependency, learning to ask for and politely reject help.

This started with last week's [site community profile] dw_news, reminding, nay urging for us DreamWideLoaders to ASK FOR HELP. Take it away [staff profile] denise :
 begin quote 
So, the support team project leads would like us to remind you that if you ever need anything, you can ask them. [... snip ...] The Support area can be used for tons of purposes, including:
  • When you think something might be broken
  • When you aren't sure whether something's broken or it's supposed to work that way
  • When you can't find something and it's not in the FAQs (and they will also take care of letting the documentation team know to update the FAQs!)
  • When you're looking straight at something you think is probably awesome, but you have no earthly clue how to make it work.
  • If there's anything in general that you have questions about, or want to know more about.
Please don't ever feel embarrassed about asking, and don't feel like you're bothering them! We see a lot of people posting entries to their journals saying stuff like "I didn't want to bother Support, but does anybody know...", and that's totally not something you have to worry about. The Support team likes being helpful. Really. They've got this thing. Plus, if you're confused about something, you are likely not the only one, and if you mention it, we get to improve things for everyone -- reporting issues is a great and easy way to participate in the process of making Dreamwidth better for everybody.
 quote ends 
I know I have hesitated to ask for help many times. If I can't find it in the FAQ, the Mean Little Voice in My Head says, "That's just cause you're not phrasing the question correctly." Clearly I'm not alone: as she emphasizes, people who volunteer to support do it because they want to help!

Unfortunately, my upbringing and micro-culture values independence above effectiveness. Her post provided me with a chance to ponder the hierarchy and costs of neediness. My standpoint is a part-time wheelchair user, who can't reach above her head, has cognitive problems which surprise folks who are only familiar with some of my linguistic skills, and constant anxiety issues.

In the supermarket, I have no trouble asking a stranger to reach a package above my head. When I need help, I never hesitate to ask someone to open a door. But when there's a door opener, I'm irritated by a stranger holding the door open (especially when they're on my side, and I have to avoid their feet): when I can control my environment, please let me proceed at my own speed. On the other hand, I know where all the door openers are, because I'm always scanning my environment for the wheelie blue; non-disabled people mostly won't have noticed them.

Last week I was shopping with [personal profile] sasha_feather, walking with two canes to get a little exercise. Then I collapsed on the floor in the store for no particular reason. I didn't think twice to direct sasha to fetch a store wheelchair to cart me about, but I didn't ask her to move me the small increments so I could browse down an aisle. (I use a powerchair because my arms aren't strong enough for a manual chair). Once we were through check-out, I was weighing whether I could walk through the exit to her car. I am so thankful that Sasha saw me over-thinking, and let me know she had no problem pushing me to the car and then returning the chair on her own.

That's my constant balancing game: which is more work for my companions? watching me worry about whether to ask for help? or providing the help without having to witness my internal debate?

MyGuy and other intimates have periodically reminded me that being able to help me out is something they appreciate. Many times they've wanted an opportunity to "do something" after witnessing my pain and frustration. Some religious traditions celebrate this relationship as a gift disabled people provide to the non-disabled, but I'm uncomfortable with being an occasion for others good works. That perspective has supported many interactions where non-disabled people's need to help me takes precedence over my desire for autonomy. That tension sometimes leads to bratty behavior on my part: when people hold open doors unasked, I may turn around and take a different path just to frustrate their need to be helpful without checking if it's relevant.

Clearly these issues are embedded in English. Consider the word "helpless": which means both "unable to provide help" and "unable to obtain help." In a better world where interdependency is valued over individualism, both kinds of helplessness will be rare.
jesse_the_k: Dreamy photo of playground roundabout in rosy foggy light (lost youth)
When I'm feeling particularly lonely or blue, I gravitate toward office supplies. This started v young, when I was teaching myself calligraphy in 4th grade. Then I became fascinated Letraset (generically: dry transfer lettering) which was state-of-the-art before computer-set type.

I was not alone in this obsession.

Even though their stock is much smaller and they lack the aiglet-obsessive clerks with stained fingers, a big box of office stuff like Staples or OfficeDepot is v reassuring.

Imagine my delight when a friend sent me this 500 pencils, true art-supply porn.
jesse_the_k: Dreamy photo of playground roundabout in rosy foggy light (lost youth)
Good bye & good riddance to 2009. The best part of the year was spending time with fangirls; the worst was spending time with myself.

Onward and upward! [personal profile] were_duck came over today so we cooked. Baked latkes—a combo of sweet potato, Yukon gold potato & zuchinni—very tasty. But oil is the point of latkes, and they would have been tastier fried in lots of it. Any excuse to top something with pineapple salsa is outstanding, and for sheer perversity the accompanying sauteed pork tenderloin in sesame oil couldn't be beat.

Dessert was gluten free double chocolate biscotti. They were super tasty, and I'll post the recipe after I try a few adjustments to make the texture correct. I was pleased that a recipe with no eggs and no oil could somehow hang together: it's the magic of almond meal!

(Too hungry to take pix.)
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (focused eyeball)
Season 2, Episode 1 of This American Life/TV is called "Escape." It's the best 30 minutes of documentary TV I've ever seen.

The first story is quite brief and, unusually for this show, told solely through pictures and first person narration. It's the surprising tale of urban cowboys: young people whose beautiful horses step proudly along Philadelphia sidewalks until they reach a huge park. There the horses and riders pound down the turf.

The second story introduces us to Mike Phillips, a 27-year-old blogger who has muscular dystrophy. At the time of filming, he can move his facial muscles and one thumb. He had a recent emergency tracheotomy which prevents him from speaking, so he uses a voice synthesizer program to speak.

Remarkably, this story is not about bravery, overcoming, or any other standard disability narrative. It's about families, independence, finding love and freedom via Craigslist. Mike's been able to stay out of a nursing home mainly because his mother has slept by his bedside for most of his life, ready to reconnect any of his life support systems when they fail. Partly thanks to talking about his life via email and in person with the This American Life documentary crew, he's hired his first personal care attendant; he hopes to use Medicaid waivers to eventually move out on his own.

Check Mike's blog, My Whole Expansive I Cannot See, for his thoughts on the process of making the documentary. A nice photo of Mike and his sweetie, Sara, is featured in this pretty good "human interest" piece from his hometown paper, the St Petersburg [FL] Times

This American Life's Escape episode is viewable for a limited (but unknown) time as a teaser on the U.S. Showtime network. (You have to sit through three minutes of commercials first; although the DVD is captioned, the online stream is not.) It's also available from iTunes and Blockbuster, but neither have captions. Grrr.
jesse_the_k: White woman with glasses laughing under large straw hat (JK 52 happy hat)
Great creative thinking at work over at cripchick's blog re: all the programmatic elements of accessiblity

I'm kvelling re [personal profile] coffeeandink's Ablism: Comment policy clarification. I think the ground is being made ready to address some of the deeper issues: interdependence, disability hierarchies, the tyranny of "normal."

MyGuy and I celebrated our 29th anniversary on Sunday night. I'm proud that we've made it so long together, and that we had the good sense to choose each other. There was some accessibility fail at the first restaurant, but I grit my teeth and got some good eats in the end.

Tapas at The Icon: tasty and not that expensive. Marinated Spanish White Anchovies, Marcona Almond Parsley Pesto, with Chocolate Espresso Crema Catalana. And room for popcorn at home later!
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Flashy Bipolar means 2x fun)
...I've been obsessively contemplating and editing and researching, I must fling this out from Mandolin at Amptoons :
 begin quote It’s not okay to call a coward a pussy, or a bad thing gay, they argue, because there’s nothing bad about having a vagina or being homosexual. But there IS something bad about not being mobile! In fact, it’s no fun at all, just totally miserable. All other things held equal, isn’t it better to be not-lame than lame?

[... snip ...]

But even accepting that impairment to mobility is itself a sucky thing, MAYBE DISABLED PEOPLE DO NOT APPRECIATE BEING THE CULTURAL GO-TO FOR THINGS THAT SUCK. quote ends 

Yes yes yes yes yes! This post (as supplemented by commenter Lexie) succinctly explains why epithets-based-on-impairment* are not just rude, but actively disabling—they create the social conditions that make living with bodily difference difficult.

* E.G., "Iranian ruling classes are deaf to the chants of demonstrators."

ETA Hah! Mandolin's insight was nourished at WisCon!
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Default)
Sally French makes the case that assistive technology can get in our way. Her brief paper is well worth reading in its entirety
 begin quote  On various occasions when, as a student, I have struggled to read something on the blackboard with a small personal telescope, lecturers have enthusiastically remarked "You're doing really well with that little gadget"--a conclusion reached more through wishful thinking than knowledge (French, (10)). A. T. Sutherland believes that this type of response is very convenient to non-disabled people because it means they do not have to help or adapt. quote ends 

She also addresses the "independence double-bind": how disabled people must sometimes spend more effort doing things ourselves than simply asking for help. The North American ideal of being able to do it all myself is deeply rooted. Unless it's in the hands of one of my intimate friends, I'm very uncomfortable with people holding open doors. I think this is partly due to second-wave feminism's rejection of formulaic male chivalry, but at heart I feel I must upend nondisabled people's expectations of what I can and can't do.
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (expectant)
At the Rethinking Disabling Metaphor panel, [personal profile] sasha_feather proposed reclaiming "crutch" as a positive metaphor, like "tool" or "scaffold."

This poet, Britany Wilson, most surely does it with "Crutches."! Thanks, [ profile] sophy for telling me about it.
jesse_the_k: White woman with glasses laughing under large straw hat (pic#143172)
So, I'm the well-nourished White woman with wavy short brown hair, brown eyes, purple glasses, moving at a scary fast speed in a dirty black powerchair with a bright red bag on the rear. My name tag is on my hat, which will be hiding the hair, but I do look something like the icon.

I'm going to be moderating three panels (what was I thinking?)

Rethinking Disabling Metaphor

Better Lives through Technology

Bringing WisCon Home: Book Clubs

I am enjoy talking with total strangers: if it's your first time at WisCon, walk up and tell me that Dorothy sent you. In addition to feminism and FSF, I am eager to natter about disability studies and access issues.

I have severe asthma and may start coughing and run screaming the other way if you're wearing any fragrance. I don't hear very well, especially in crowded environs. I don't do hugs. The left side of my body is very sensitive to pain: please don't touch my shoulders. My memory for faces and names is stunningly bad: I've forgotten MyGuy's name, and we've been living together for 31 years.

If you're thinking about joining the concom, I'm happy to share my experiences.

Looking forward to connecting names with faces and online identities...


May. 6th, 2009 04:08 pm
jesse_the_k: Slings & Arrows' Anna sez: "I'll smack you so hard your cousin will fall down!" (Anna smacks hard)
[-same as text above with other folks' comments-]
jesse_the_k: Slings & Arrows' Anna sez: "I'll smack you so hard your cousin will fall down!" (Anna smacks hard)
In this week's Science Times, Dr. Pauline Chen meditates on her own reluctance to use interpreters, as well as a recent study in the Journal of Internal Medicine.
“[...] physician-patient communication is driven by the physician’s need for patient input rather than by the patient’s need to communicate. Communication is viewed as something that is supposed to change decisions that the doctor can foresee. So the use of interpreters may have more to do with how we think about communication with our patients and less to do with our views on interpreters, limited English proficiency patients or even time pressures.”
Chen provides a vivid example of the unquestioned medical assumption that what the doctor has to say is more important than the patient's needs. She decides her ability to ask Dolor? and that patient's response of thumbs'-up or thumbs'-down is adequate for "routine rounding" (i.e., post surgical check-ins).

Chen is a transplant surgeon; the patient she's routinely rounded has just had a liver transplant. As anyone who's been hospitalized for illness or injury will readily understand, there's nothing quite so intimidating, so important as those 5 minutes a day when you actually get to communicate with the doctor. This is thoughtless privilege at its most frightening. The JIM study concludes:
Although previous research has identified time constraints and lack of availability of interpreters as reasons for their underuse, our data suggest that the reasons are far more complex. Residents at the study institutions with interpreters readily available found it easier to “get by” without an interpreter, despite misgivings about negative implications for quality of care. Findings suggest that increasing interpreter use will require interventions targeted at both individual physicians and the practice environment.
The comments are interesting, if ill-informed. There's the predictable "don't get sick in a language you don't know," but most get stuck in two issues—cost and availability—for which the study controlled.

Do readers not really read? The willingness people have to defend the indefensible fascinates and repels me. Dr Chen has made a habit of bravely admitting hard realities in a national newspaper; the commenters largely want to give her a pass.
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (gopher hunter)
The more I read about airline travel these days, the gladder I am I haven't had to fly recently. Here's a local news video plus a transcript.

Power wheelchair user abandoned on plane at O'Hare

Do read the comments on the story, as (naturally) the TV show didn't have time for the full details.

It surprised me when I learned that the airlines don't direct the actions of the ground personnel, so each trip requires at least two successful hand-offs: between the airline and the departing terminal folks and the airline and the arriving terminal folks. Which is how Pete Boulay was boarded on the plane with a straight back aisle chair, but abandoned on the plane when it arrived at O'Hare.

As I mentioned in a comment there, airline services have gone way downhill recently, but most flyers don't have to worry about being trapped in the plane! Whenever I have flown there's been one flight crew member who sits down and asks me what will work best if there's an emergency evacuation. After that discussion, I make a point of asking that attendant, "Will you stay with me until I'm off the plane?" and they've always said "yes." (Maybe because they're already in a "time to talk one-to-one" headspace at the moment.)

Then when there's been a delay in my chair showing up, I have an ally who knows how to get in touch with the folks in the terminal. It's saved my sanity twice.

The "straight back" is my least favorite bit of assistive technology. It's a very narrow, not-really-padded hand truck that airline personnel use to move a passenger from xir own chair at the plane's doorway to xir seat.
16 inch wide steel frame chair with two wheels
Photo description: steel frame, 16 inches wide, with two thin pads on seat and back. Two chest seat belts cross in front, with one leg seat belt at mid calf. Pair of wheels in back and tall handle permit handler to tip rider back and move them like a refrigerator.

Here's a useful "when wheelchair users fly guide" from Spinal Injury Net
jesse_the_k: Slings & Arrows' Anna sez: "I'll smack you so hard your cousin will fall down!" (Anna smacks hard)
I've now heard and tried the talking Kindle 2. It's basic, but it's there. Folding assistive tech into mainstream products is Universal Design, one of my holy grails. That the Author's Guild is claiming this will cut into sales of audiobooks is evidence that they've not sat down and just listened to the Kindle. The TTS is nice, but it's nowhere near as good as the current top-of-the-line technology, much less a human narrator. People without print impairments read audio books while exercising and on the road; neither of those activities lend themselves to audio Kindle reading.

So I'm delighted to report that the Reading Rights Coalition plans an April 4th demonstration against the Author's Guild (as well as the on 24-25 April at the LA Festival of Books). Participants include both organizations of & for the blind (NFB and ACB); AHEAD representing folks providing disability services in secondary education; AAPD, a cross-disability lobbying group; DAISY the standards organization which has guided the creation of structured, random-access audio with parallel text; and many more.

about me

jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Default)
Jesse the K

hot topics


RSS Atom

style by

expand cut tags

No cut tags

sub filters