capriuni: Text: If you want to be a Hero, be Good to the Storyteller. (Default)
Here is her description of how that works (Excerpted):

(Quote)
Today's theme is "building a future." I will be checking this page periodically throughout the day. When people make suggestions, I'll pick some and weave them together into a poem ... and then another ... and so on. I'm hoping to get a lot of ideas and a lot of poems.

(unquote)

Read the full details (and other people's prompts), here: http://ysabetwordsmith.dreamwidth.org/10493425.html
capriuni: multicolored text on black: "Quips and sentences and paper bullets of the brain" (paper bullets)
I just finished this one, and it amuses me. I thought it might amuse you, as well.

AN ANSWER TO A FAQ:

It's weird, but I suppose it might be kind,
When strangers ask me this, out of the blue--
Acknowledgment I have an inner mind,
(When all they see is what I cannot do).
I know the answer that they hope to hear
(Their desperate longing leaks between the seams)
Although the truth is something else, I fear:
“Not really, no. I never walk in dreams.”
I leave it there, instead of going on:
“Except, of course, when nightmares trouble me.”
Within my mind, twixt midnight and the dawn,
“Walking” means “coerced conformity.”
In really happy dreams, I belly-crawl--
True to myself, my body, brain, and all.
capriuni: Text: If you want to be a Hero, be Good to the Storyteller. (Default)
Remember that post I made a few days ago, about the discussion thread I started regarding the transhumanists' goal of eliminating disability as part of creating a future Utopia (here)?

Well, yesterday, I got a troll's response:

quote:
"disability is bad thus it should be eliminated. If they could eliminate it you would get rid of your disability and if you say you wouldn't you are lying."
end quote.

One advantage to on-line discourse, is that you have time to come up with an answer $#!+ such as this deserves, instead of sitting there in stunned silence. This is the reply I came up with, just now:

quote:
"Yes, there're times when I wish I could walk -- such as when I need to pee, and the only available bathroom is up a flight of stairs. But those moments are brief. Mostly I just wish architects had more foresight.

BTW: I only walk in my nightmares. In truly happy dreams, I'm crawling.

If it makes you happy to think I secretly wish to be like you in the most superficial way, you are free to dream on."
end quote.
capriuni: Text: If you want to be a Hero, be Good to the Storyteller. (Default)
Around the time I found that video from the PBS Idea Channel, on how the Internet is Cats, I found this one on the philosophy of Transhumanism:



And I posted the following reply:

CapriUni

Quote:
As someone who was born with a physical disability, I find the transhumanists' "ideal" of eradicating the experience of disability disturbing ... to put it mildly. As if there were only one kind of human life capable, or worthy, of happiness -- especially since many modern technology breakthroughs (touchtone phones, voice recognition, computer track balls), all started out as adaptive tech for people with disabilities.
Unquote.

I got a few "thumbs up" clicks, and a few replies (to which I replied in turn). I went back this evening to check on the threads (and reply to a couple of days-old ableist comments, once I figured out how), and was chuffed to see my reply had gone to the top of the "Top Comments" section, with 20 thumbs-up, while the next runner-up had 2.

Anyway, I'm posting this here because it's one of the main topics I've been thinking and writing about this week, and I think those who disagree with me are as interesting and illuminating as those who agree, so therefore:

Threaded discussion continues under this cut )
capriuni: Text: If you want to be a Hero, be Good to the Storyteller. (Default)
In my last post on this subject, I stated my discomfort with the current cultural discussions of "Bullying, and What to Do About It," because, in my experience, it's the adults who form the largest segment of the bullying population, and that children, on the whole, are more tolerant, and no one seems to be talking about that part of the equation. This entry started out as what I thought would be one brief sentence in a reply to a reply to that post... and then it kept getting bigger, and I realized it should be its own thing:

... I know: I've seen the reports, and the candid filming of behavior on playgrounds and in lunch rooms, so I know that childhood bullying exists. But it's still my deep is my deep gut feeling that adults are far worse sinners as far as bullying goes. I don't think I will ever shake it completely. And I think this is a direct result of growing up, from birth, with Disability Disprivilege.

You see, what I've seen, from the time of my earliest memories, is that a very great (if not a vast majority) number of people who work in the "Disability Services" sector -- from young adults taking summer jobs at "special" camps, to Special Ed teachers, physical therapists, and social workers, all the way up to administrators of disability services at city and county levels -- are drawn to the field because they are bullies.

First off, they know that the job title on their business card is enough to earn them adulation from their community (for making such a noble and charitable sacrifice on behalf of those poor unfortunates). So they get near global reinforcement that their view of the world is the one true view (and this is precisely what bullies have been trying to prove to the rest of the world since they uttered their first insult in preschool).

And second, and perhaps more important, it puts them in position of control over other people's lives, and gives them an air of expertise, and the power to make up the rules of the game. So, for example, when they tell parents of a disabled child: "Johnny will never be able to read at grade level, anyway, so we'll just pull him out of class during English, so we can at least train him to walk normally as possible," most parents just take their word for it (and any quick survey of "rehabilitation and treatment" literature will reveal that the appearance of normalcy is the number one measure of "quality of life").

If Johnny, himself, tries to complain or protest, he gets stuck with the label "Resistant to Treatment," and "Disobedient," and gets punished and put in isolation.

And because of how the Rehabilitation Complex is organized, my parents, who were incredibly supportive of me, and did everything they could to reinforce my sense of self-worth, were outnumbered by these "Experts and Professionals" by about four to one.

........

Meanwhile, in grade school, I couldn't run and play hopscotch or jump rope with the rest of my class. And so I spent recess on the sidelines, sitting in the shade of the big oak tree.

And before you start listening for the sentimental strains of the violin, underscoring the "loneliness and isolation of the crippled child's life," consider this:

The children who were bullies -- who were afraid of and disgusted by any whiff of difference -- knew that no amount of insults or punches could shame me out of my wheelchair, so they stayed the hell away, rather than catch my cooties. And the kids who were interested in who I was as a person, who liked wordplay and imagination games (and perhaps, sensed that I came armed with my own Bully-repellent force field) came over to play with me of their own accord. And together, we made up our own games, where everyone was an equal participant.

So, in my life, my interactions with the Adult Population were always skewed toward the bullies-and-thugs end of the spectrum, and those with the Child Population were always skewed toward the Incredibly Nice and Ridiculously Creative end of the spectrum.

So -- yeah. In the ongoing "What to do About Bullies" discussions, my instinct is going to be to side with the kids, as "my tribe."
capriuni: Text: If you want to be a Hero, be Good to the Storyteller. (Default)
There's much talk in our culture, at this particular moment in history about the phenomenon of bullying... And the general, distilled, cultural meme that seems to be coming out of all this talk is:

"Children are, by nature, horrible, and cruel, and they need to have their broken, dysfunctional, compassion modules repaired by adults who know better."

And... that makes me very uncomfortable. Because? Frankly?

The vast majority of all the times in my life that I, personally, have been bullied, especially because of my disability and the difference that engenders (there's a part of my mind that is shouting "EVERY SINGLE TIME!!!" But I'm trying to stay away from extremes), has been at the hands of adults. On the whole, I have consistently (that part of my brain is shouting "ALWAYS!") felt much safer in the company of children, and respected as an actual human being.

And ...

On the one hand, I believe and respect the stories of people who have been bullied and harassed by children. And on the other hand, I want to respect and believe the stories my own memory is telling me about my life... without just dismissing my life experience as some "strange luck."

I sincerely doubt that I was visited by a fairy godmother in the Neonatal Unit of Strong Memorial Hospital and blessed (or cursed) me with a "backwards bully spell," after all.

Also, I think explaining bullying behavior by simplifying it to "Children are horrible little bundles of id and cruelty," is likely to miss the forces in the culture (at the adult level) that encourage bullying, so that the children who are so inclined will learn how it's done...

I've been puzzling my way through some hypotheses on how to reconcile my experiences with those of others... haven't gotten there yet.

But... yeah... that's kind of been circling through my mind, of late. So if you see a bunch of posts about this from me, that's why...
capriuni: Text: If you want to be a Hero, be Good to the Storyteller. (Default)
A continuation of this post: My Left Foot [/Unintentional Cerebral Palsy In-joke]

Right. So, as I mentioned in that post, contracted Achilles tendons, and resulting chronic toe-walking, is pretty much universal among people with cerebral palsy, regardless of severity or type {Spastic, Ataxic, Mixed, Hemiplegic, Diplegic, or Quadriplegic, Gross Motor Function Scale 1, 2, 3, 4, or 5}* -- whatever the difference, the presence of toe-walking is there.

This struck me as strange, considering how diverse the rest of the Cerebral Palsy spectrum is (as evidenced by the list of qualifiers in the curly brackets). So -- about a week and a half ago, I mention this to Audrey, saying (something like):

"There must be something particularly tricky about putting our weight on our heels, if that's the first part of the system to break down."

And she responded: "Well, not really. It's just that folks with C.P. don't walk. It happens to able-bodied people people, too, if they're off their feet for a long time. That's why doctors put you in a big plaster boot when you break your leg, to keep your foot at 90 degrees, so your heel cords don't tighten up, and you toe-walk when they take the cast off."

It took a while for me to get past the subtext (translation: People with C.P. walk funny because they give in too easily to their condition). But a couple of days later, I started thinking about the fact of what she was saying: It's natural for all human beings to drop their toes unless they're actively using their feet to support their weight.

And that's when the light bulb flicked on:

cut for length, and smattering of medical jargon ) for most of the last 2 million years, whenever we weren't walking, we were sitting or sleeping on the ground, instead of on furniture that allows us to stop at the halfway point. So I came up with the hypothesis that maybe we need to drop our toes in order to get up again.

So I told my idea to Audrey, when she came to take me shopping )



*For those who are curious, my C.P. is Spastic, Diplegic, G.M.F.C.S. 4 (Well, 3, sorta, but I mostly live at level 4). The first word is the type of movement my body has, the second word is for which part(s) of my body are effected, and the number score refers how close to "normal" is my means of getting from point A to Point B (on a scale from one to five)

**I find it really interesting that she considers herself a proud and opinionated feminist, but she still reverted to "how the adult men do it," when discussing a wide swath of human culture. I was really tickled, frankly, that I could turn that around and speak of the men as the more fragile biological gender which is the exception rather than the default.
capriuni: a vaguely dog-like beast, bristling, saying: grah! (GRAH)
[ETA 1: Changed the subject line]


So (as I may have mentioned here before) I've stopped using a mouse with my computer, and use what's called "MouseKeys" (at least, in Windows), where you can make the number pad on your keyboard work as a substitute cursor-control.

I suspect Macs probably have something similar, but I don't know what Apple has named it, or how you turn it on. But on a Windows Machine, at any rate, you turn on your MouseKeys by pressing CRTL+Shift+NumLock at the same time (and after you have it set as your default, you just toggle it on/off by clicking NumLock).

I use this because, no matter how cheap mouses are now, when they fall on the floor they are almost un-retrievable -- they're very hard to pick up with one of those reacher-grabber-things. And at even just $10 a pop, that gets expensive with every one I run over in my wheelchair, between dropping and retrieving...

Anyway -- onto the "Dimmer Switch Moment"

The thing is: MouseKeys are a lot, lot, slower than conventional mouses; they move across the screen one pixel at a time, and even at their fastest setting, it can take them several seconds to go from one corner of the screen diagonally to the other. You can speed up the acceleration, but you lose some control in the trade. Also, you have to click the different keys in combination in order to get your cursor to specific points on the screen. And every time you stop and change direction, your cursor slows down a bit before getting back up to whatever top speed you're comfortable with.

[ETA 2: I just timed it by counting "One chimpanzee, two chimpanzee...," starting the mouse in the upper left corner of my wide screen monitor to the bottom edge, then changing direction to get to the bottom right corner. I have my mouse keys set up at top speed and slow-medium acceleration. It took fifteen 'Chimpanzees' to get from one corner to another]

My realization?

Use MouseKeys and an online Flash puzzle or skill game as a point of "Sensitivity training" about why kids with "Severe" C.P. are so often labeled as "intellectually Disabled," and how unfair, inaccurate and frustrating that is simply because they have trouble responding to questions as quickly as their mobility-normative peers.

Don't even try this experiment on those timed puzzle games where the game ends when the timer runs out, 'cause you will never get out of Level One. But here are a couple of games that I actually enjoy playing, even though, because of my technology, my highest scores are far below average -- I won't give you links, 'cause the pages are full of ads. But if you put these names in a search engine of your choice, you'll get lots of hits:

"Magic Towers Solitaire" (very pretty to look at, and the sound effects are pleasing, too), which, if it were classified as and I.Q. testing game, would be a number logic / number pattern recognition test; and "Magic Words" (Again, with the pretty visuals and music), which is a scrambled-word vocabulary test. ... If you decide to do this sensitivity-test for yourself with this latter game, be sure to do it in "puzzle mode."

The fact that these games continue even after the clock runs down is analogous to the "Special Accommodations" that educators and psychologists insist they give "Special Needs Students" to be (air quotes) completely fair. But both of these games award bonus points that are time sensitive -- and that you will never get awarded without a normal-speed mouse.

Okay, yes. I am daring you to try this. See what it feels like when you know the answer ten times faster than you can tell the "game master" that you know the answer. Then imagine that the computer is a human being, who's already prejudiced against you, and is demanding proof of your intelligence before she or he lets you into a mainstreamed kindergarten class.

You may get an idea why the statistic "Between 30% and 50% of all children with cerebral palsy have some level of mental retardation." makes my blood ... simmer, and at the very least, sets off my ORLY?!! alarms.

Also, as a side note: see how removing the ability to play these games quickly changes their feel, psychologically.

...Just a thought.
capriuni: text icon "Writer's Block" (blocked!)
It's a New Month -- And it's November. And so that perennial question arises.

At first, I thought I'd come to a positive decision Not to partake in NaNoWriMo this year. I've done it six years in a row, now, and while it has, each time, forced me to to create lots of new word-combinations in long, polymer-like strings, it has yet to help me produce any story I want to continue with, past December 1.

Also, now that I've gotten back to recreational writing for its own sake, via my fanfic to original fiction transformation of Eloise (a little bit, though I've let that slide recently), I've discovered that my greatest joy in writing only comes over me when I give myself time to live and daydream inside the worlds I create.

HOWEVER --

At the end of this month (the last weekend), I will be traveling to New York to take part in the Art Garden, again. And this year, I'll be staying an extra day so that I can be videotaped reading some of my work for the Art Garden website they're putting together (and yes, when it's up and done, I will be posting a link here, so you all can see and hear what I look like -- and I will be advocating for captioning and screen reader accessible text, you betcha!).

As much as I love the Art Garden, ever since Dad got sick and later died, this has meant being stuck in one hotel room (and car) for four straight days, with no physical, personal space for myself, with a woman who has very different needs for things like room temperature and background noise (and also, even with the best of rooms, a bathroom that doesn't fit me).

In the past, I've always used my NaNo novel to create a psychological buffer zone for myself. And now, the prospect of dealing with all that without the project that requires to write past word #35,000 is scaring me at the moment... scaring me quite a lot, actually.

So ... Should I, or shouldn't I?
capriuni: Text: If you want to be a Hero, be Good to the Storyteller. (Default)
I'm trying to find photos (and pre-photographic art) to illustrate This 'Disability Rights Protest Song' video I'm working on... trying to find pictures of the disabled [both physically and cognitively] in settings where they've been shut away from society.

Putting keywords like: "Nineteenth Century Almshouse Disabled History" in Google's image search has pulled up nothing but images of the outsides of buildings, looking all romantic and pretty, with emphasis on the gardens that were around them (and quite a few advertisements for "historic" almshouses that have been converted into luxury apartments for wealthy people... [Sad facepalm]).

Putting keywords like "Nursing Home Disabled residents" and "Residential School Disabled" into the search pulls up images posted by the nursing homes themselves -- online versions of glossy brochures, touting what wonderful, happy, places they are.

Then, there are sites like this: Disability History Panels that make all sorts of "shocking" claims about how horrible people were to the disabled in the past... And while I have no doubt as to the truth of the claims, I can't find a single citation for where these facts come from... so that those people who do doubt the truth would find it easy to dismiss the history as 'hype'.

Meanwhile, that particular site, though posted in connection with Alaska's Health and Social Services website, was plagiarized, word-for-word and image-for-image from an online interactive Flash-based history project done by the Minnesota Governor's Council on Developmental Disabilities.... And the Minnesota site doesn't give any sources, either ... And their eleven-question "Quiz Show" on history of disability is more editorial than fact (asking whether calling someone an "idiot" is acceptable, or not, and claiming for a fact that it is not -- period. While I may agree with the opinion -- that is still an opinion. And "educating" in this manner only plays into the arguments of those who say "Disability Rights" is nothing but "Political Correctness.").

Our elected officials. Are they all fourteen-year-olds?
capriuni: Text: If you want to be a Hero, be Good to the Storyteller. (Default)
ETA-- second attempt to cross-post this, 'cause y'know, LJ was down...

You know what I hate most about LiveJournal error messages? The mascot, "Frank's," face. It was obviously intended to be cute... but it's just creepy as Hell. It was obviously drawn by someone who's never even looked at a real goat, and has no interest in doing so.

They've given a something with a vaguely goat-shaped head and horns a dog's shiny black nose, and forward-facing, bright yellow human eyes, complete with human eye muscles that crinkle the eyes at the corners when showing emotion.

A real goat's eyes, of course, are on the sides of their heads (like deer, horses, sheep, cows, and all the other herding prey animals) And, and they have horizontal, almost rectangular pupils, and the irises are yellow at about the same shade as a cat's eyes are yellow -- not the day-glow safety yellow some idiot decided to stick on "Frank."

Compare the cartoon of Frank with this photo of a real goat: Billy the Kid (photo of a buff and white, bearded, goat with dark gray/black horns, wearing a blue collar). Now, if an image like that popped up, I might actually be amused and/or reassured. And, yes, I do believe that goat is actually smiling at the camera; I had two goats as pets when I was a tween-teen, and they were the only mammal I've encountered other than humans that would actually turn and laugh at you -- the corners of their mouths would curl back just slightly, they'd open their mouths and pant "heh, heh, heh!" There's a reason goats are often the totem animals of trickster gods.
capriuni: Text: If you want to be a Hero, be Good to the Storyteller. (Default)
Hey, I felt that here in Chesapeake (about 90 minute southeast of Richmond, if I recall). The first split second, I thought a cat was pushing against the back of my wheelchair.

But then, it kept going... and I heard the house creak, and I looked out the window, and I saw a sapling shaking back and forth to the same rhythm. Lasted a good minute or so.

I could've gotten freaked. But then I decided to think of it as Mother Nature giving me a butt massage. ;-)

---
In other news, I've been in a grump all day because this morning, I heard a pundit talking on the radio (NPR) that in order to fix the economy, we have to get a handle on Medicare and Social Security and (I may be paraphrasing, it's been stewing in my head all day, and words may no longer be exact):

"People need to grow up, and learn to do without the goodies they're expecting."

Goodies! Medicare already denies wheelchairs and equipment unless you're to the point that you can't get to the toilet on your own, and that *sputter* (can't think of a word angry enough) compares the pittance we get to lollipops, or something.

ARGH.

So, yeah. An earthquake was the highlight of my day...
capriuni: a vaguely dog-like beast, bristling, saying: grah! (GRAH)
(I'll cross-posting this to [community profile] disability and [livejournal.com profile] no_pity)

Been looking for some hard numbers, because I've had this idea for a series of "Statement" tee-shirts, protesting the wording of commonly quoted stats relating to "Developmental Disabilities" (Autism, Cerebral Palsy, Down Syndrome), and I thought I'd start with C.P., since that's the shirt I'd wear.

I found one site which is (relatively) non-rage-inducing, because it's not as scare-talking as the doctor and lawyer-sponsored sites: My Child Without Limits.

Here's the paragraph I found on C.P. Stats:

(quote) It is estimated that two out of every 1,000 newborn children will develop cerebral palsy. And approximately 40% of those born with cerebral palsy will have a severe case. Right now, about 10,000 babies and infants are diagnosed with the condition each year. In 2002, the number of cerebral palsy cases in 8-year-old children was found to be one in 278. It is the most common motor disorder in children and is second only to autism as the most common disability in children.(unquote)


Okay, that first stat I've seen left, right, and center (though saying "2 out of 1,000" is clunkier than "1 in 500"). But how does it almost double between infants eight-year-old kids?

Wherein I puzzle this out )

Anyway, the design I was thinking of will state something along these lines:

"One in X infants will have Y-condition -- Means: One in X adults live with Y-Condition. (We are among you! Ooooo!)" ... Spoofing the old sci-fi horror flicks.

But now, I'm not sure which numbers to use.

My "Grah!" is the perennial sort: Why are we only talked about as infants and children? Why are all the sites on information and support groups aimed at our parents and teachers?

ETA: )
capriuni: half furry, half sea monster in wheelchair caption: Monster on Wheels (Monster)
So. For months, now, I've had this C.P.-related design idea for a Zazzle Tee-shirt/mug/whatever that, today, sent me searching for images of infant brains showing C.P.. And that led to reading paragraphs around the images. And just now, I found the following (from a site aimed at medical people, based on the vocabulary):

(Quote) Approximately 30-50% of patients with cerebral palsy have mental retardation, depending on the type.[6, 7] However, because of oromotor, fine motor, and gross motor difficulties, communication in these patients may be impaired and expression of intellectual capacity may be limited. However, if cerebral palsy is approached in a multidisciplinary manner, with physical, occupational, and nutritional therapy to maximize rehabilitative efforts, patients can be more fully integrated academically and socially* (Unquote)

[Emphasis my own.]

This is what I have been saying for 20-something years, now. But if that second sentence is true, then the first sentence is false. Let me try to fix it:

Approximately 30-50% of people with cerebral palsy may not have been given full educational opportunities, and are thus classified as mentally retarded.

There! That's better!

From Medicine-Science: Cerebral Palsy (Posted by admin, August 6, 2011)
capriuni: Text: If you want to be a Hero, be Good to the Storyteller. (Default)
So, last night, I was tootling 'round Zazzle.com, looking at customized tee-shirt designs, for Disability Culture ideas, And I see that one store has a bunch of "Cerebral Palsy Dragon" products.

Well, I like dragons, and I have CP. So I clicked.
... Cue the gnashing of teeth and the tearing of hair.

What I learned was that there's a "Green Ribbon Awareness Campaign" ... Thing. And nearly every design is about how Cerebral Palsy is a terrible, horrible, no-good, very bad thing that must be Stamped Out. Really -- there's one set of products with a rage-filled cartoon elephant squishing a black furry monster to death. The black furry monster, of course, represents the horribleness that is the scourge of C.P.

... Never mind that C.P. is a condition with a wide variety of causes and a nearly as wide a range of symptoms. ...We don't want to actually raise that much awareness. That would just confuse the nice able-bodied people. And of course the "awareness campaign" is all about how to get rid of condition, instead of, oh, say, maybe raising awareness of all the things people with C.P. are capable of, and getting them access to education and employment (outside the sheltered workshop model, mind you).

Meanwhile, up until last night, I didn't even know there was this Green Ribbon thing, so this morning, I looked it up on Google. And while I haven't (yet) found out who dreamt up this "heart-warming" campaign. I did find a Medical Support group site that hasa page with a summary of all the currently- running "awareness ribbons" and what each color symbolizes, here: http://www.mdjunction.com/awareness-ribbons.

...I don't know whether to laugh, cry, or throw something. Here are just a few highlights:

(dark) Green: Organ & Tissue Donors, Mental Health, Neurofibromatosis, Kidney Cancer, Cerebral Palsy, Bipolar and Tourette syndrome. (Not to be confused with Lime Green ribbons, which stand for ... wait for it ... Lyme Disease)

Of course, if I'm not in the mood to wear green, I could also wear burgandy, for what's at the end that color's list: myeloma, hospice care, Sepsis, APS (Antiphospholipid Antibody Syndrome), FVL, Thrombophilia, headaches and to support the Permanently Disabled (though I'm not sure whether I wear it for general disability or headaches... all this pity is definitely headache-inducing).

Oh, and there's also a "ribbon" printed especially for Autism Speaks, with their multi-colored puzzle piece design (copy-and-pasted directly from the site): Wear the Puzzle Ribbon to support those 'living with' autism.

...Of course they'd put ironic air quotes around "living with." No one who has autism actually has a life.

I think there's an epidemic of ribbon-wearing going on in this country. What color ribbon should we use to raise awareness of the problem?

(cross-posted from [livejournal.com profile] dot_gimp_snark)
capriuni: Text: If you want to be a Hero, be Good to the Storyteller. (access)
Okay, so last night, I was watching a repeat of Bones, which has a history of being incredibly ableist in its plots and dialog. And sure enough, the b-plot of last night's episode was the angst between the b-plot romantic couple, newly married (and now preggers) Angela and Hodgkins [sp?], over the fact that their yet unborn child will have a one in four chance of being BLIND (horrors of horrors!).

But then it ended sort of okay, with Hodgkins saying: "So what if I won't be able to teach my child to look through microscopes? We can play the piano together. Our Kid will be fine. We'll be fine; we can handle anything."

So I left the show feeling a bit more optimistic. Sure, it was still ableist. But it wasn't as ableist as it's been in the past.

Then. Then.

Then the evening news came on. And the "Health and Science" segment was all about the worries new parents have when they discover their baby isn't perfect, like they expected. And the "imperfections" they were discussing?

Being a little bit cross-eyed.

Having dandruff.

Having acne.

And the final word from the Nice Lady Baby Doctor in the White Coat of Authority[tm]? "Don't worry. Be patient, and in a month or two, your baby will be perfect" (More or less a direct quote... At least as far as I remember).

Facepalm.
Headdesk.
Headwall.
Repeat.




While I was writing this, I had the idea for a new icon to stick on my Ableism-themed posts (on the DreamWidth side): "Monster on wheels" Y/Y?
capriuni: Text: If you want to be a Hero, be Good to the Storyteller. (Default)
In reply to this video: For Hearing Parents of Deaf Children, a year ago, someone wrote this:

(quote) My son is deaf. I learned to sign, but PSE [translation: pidgin signed English]. I have hard time understanding ASL. His daughter is deaf, she is almost 8. Her mom got her 2 CIs. The first when she was 1 and the second when she was 5. She wants to be deaf when she is with her dad. The judge just ordered that she must wear BOTH her CIs [translation: cochlear implant] all the time except for when she is bathing or swimming or wearing a helmet. She went without it for 4 days and now the mom can keep her deaf dad from seeing her if she wants. Well? Your opinion (unquote)


I came across that comment a few days later, and replied:

(quote) Grandma2jam -- My thoughts?

This is cruelty.

I am hearing, but I cannot understand how adults can, with a clear conscience, impinge on the personhood of a child like that. (actually, I can understand it -- it stems from centuries of mis-informed prejudice that continues to go unchallenged -- it just makes me incredibly sad)

CIs may be wonderful for some people, but to force them on a child who can't fight back, just because you don't want to learn sign? The mind boggles. (unquote)


A year goes by, and I forget that I made that comment (in the meantime, it gets two *thumbs up*).

Then, at 2:14:44 pm today, I get a note in my email from YouTube that someone has replied to that comment, thusly:

(quote) @CapriUni Do you have a deaf fetish? Do you think any sane parent would deny their child the right to hear? I would cut off a hand or a leg if it would give my deaf child the opportunity to hear and open more doors opportunity. Parents love their children, their concern is for their children. Not the feelings of the so-called deaf community. They don't care if the so-called deaf community is offended, they are focused on their children That is why more and more children are getting CI's . (unquote)


I can't let that sit. I know I shouldn't feed the nasty trolls, but... that comment about "cut off a hand or leg..." is just an insult too far.

Here's my immediate response:

(quote) @goodgirlkay Of all the ableist *. No. I do not have a "deaf fetish." I have, however, made Deaf friends, and studied the language [AN: I should have said "ASL," I know]. It's not deafness that fractures the Deaf community, it's their loving families, who are too afraid of difference to let their children use their natural language.

Also, I have cerebral palsy, and am active in the physically disabled community (and yes, we're a real community, too) So speaking of limb loss that way does not impress. (unquote)


A few minutes later, I realized I hadn't come close to what I really needed to say -- that first response was all about MEEEE. But, it turns out you can't delete a comment, once you've posted it to YT, they way you can with LJ or DW, so I posted this additional comment:

(quote) @goodgirlkay I'm sorry. My last reply was written in anger, and came out with more rage than clarity, I fear. Let me try to put it more succinctly: You'd cut off a hand or leg so your child could hear. You're clearly willing to pay for an expensive and risky operation. Are you willing to put in the energy and time to learn Sign Language? Are you brave enough to let your child have Deaf mentors, so that when techology fails, your child will still have a voice and the wisdom to use it? (unquote)


And now I'm done with that exchange, I think. If she replies to me again, I'll just give her a down vote.

It's just -- GRahAugh! I've seen so many able-bodied parents (in life and quoted in popular media) say "I'd do ANYTHING for my child (Waah)!!" where "anything for my child" really means: Put my child through a whole bunch of crap.

grah.

I'd like ice cream and cookies, and a pony with glitter now, please -- or fun and silly, creative and good YouTube recs, or book recs, or picture recss, or... something (whichever is easier)
capriuni: Text: If you want to be a Hero, be Good to the Storyteller. (geek god)
I'm afraid this may come across as: "My oppression is more oppressive than your oppression."

That makes me uncomfortable, and I don't want to be the sort of person who says / thinks that. BUT:

The context was a discussion on a call-in radio show (NPR: Talk of the Nation, not that it really matters) about the violence in American football, and the threat of concussion, and early onset dementia that can come from that. And the guest was saying: "American football is supposed to be violent, and that's why Americans watch it, and buy tickets to see games, and I love all the violence, it makes it fun!" (paraphrased, but not much of an exaggeration).

And the question came up of whether American football tackles should be more like rugby, and thus reduce the risk of concussion. And the guest said:

"But that leads to arthritis. And now [retired football player whose name I did not recognize] has arthritis in both knees, and walks with two canes. Which is worse?"

And the show's host just let the question hang there, and did nothing to challenge it.
_________________

And I hate that having a visible disability is such a taboo that people can even think, for a minute, that losing your knees might be worse than losing your mind, and your personality, slowly, over time.

Why is this even a question!?!?

Now if my mother were here, she'd say (regarding the guest): "Consider the source." The person saying this stupid thing is a former athlete, who lives and works among athletes, so for him: his physical ability is his personality.

Except it's not just from him, and his ilk, that we get this ... this... instinctual revulsion, this hatred disguised as charity. It's from writers for TV and Movies, who write: "The disabled get all this money thrown at them with grants" (Last Thursday's CSI:). It's from architects who put the only wheelchair accessible entrance down at the end of dark alleys, because they "Don't want to compromise the visual integrity of the facade." It's from radio talk show hosts who hear: "Which is worse?" and don't reply with at least a: "Wait... What?"

*sigh*

I have a love-hate relationship with my species, right now.
capriuni: Text: If you want to be a Hero, be Good to the Storyteller. (Default)
You see, the thing is: They take your "design" and apply the same image to every single object they're able to sell starting with tee-shirts. They just assume that you want to create a simple image & word combination and stick it smack dab in the perfect center of everything.

So a design that I've specifically worked out for a mug (and also with Left-handed and Right-handed variations) would get stuck on tee shirts, baby clothes, wall clocks, hats, bags and whatever else they sell. And I'd have no control over how they arrange the image on the object, so with my mug, for example, they'd probably mess up the placement, and ruin the humor.

I'm sorry... but: That's not "design."

I can choose a specific image for a specific object if I'm creating them to buy for myself, but not if I want an easy way for my friends to get them for themselves.

Oh -- and in case you're wondering why I'm so opposed to tee-shirts: because I use a wheelchair, and, when I'm out in the outside world, wearing a seatbelt, the standard placement of t-shirt graphics (with the top of the image level with or just below the arm pits) means that it's too low down for anyone else to see it. So what's the point? And I'm probably not the only wheelchair user with the same frustration. A mug, or a bumper sticker, however, lets you "carry your message" in a more flexible way.

(When I was younger, and painted my own shirts, I'd place the focal point of the image around the neckline between the shoulders and the top of the chest).

Oh well. Maybe I'll check out Zazzle, or something. Or find a cafepress-like business that uses some other default object besides clothing.

*sigh*

*is disappointed.*
capriuni: Text: If you want to be a Hero, be Good to the Storyteller. (Fishnorfowl)
I was flipping through the channels on my television, last night, and landed on this show:

Get off your knees: The John Robinson Story

Here's the blurb that's written in my local PBS schedule:

(quote) GET OFF YOUR KNEES profiles the compelling and inspirational John Robinson. A congenital amputee, Robinson - who stands just 3'9" tall - overcame major challenges in order to achieve the life of his dreams. Few, including his parents, expected Robinson to find a job, let alone succeed in business or start a family. Yet through his remarkable tenacity, talent and faith, Robinson made his way in a world not designed for those without typical arms and legs - and now leads what many would consider an ordinary life. This "ordinary" life, however, requires Robinson to struggle with what others take for granted, such as driving a car or playing a round of golf. (unquote)


In the opening scene, Mr. Robinson walks out on stage in front of an auditorium of privileged college students, to a predictible gasp. He gets up to the podium and opens with a line something like this (I don't remember his exact words, and there's no transcript available at the website, yet):

"I've just made a first impression on you. I'm now going to teach you how I've learned to overcome first impressions. As marketing students, you've often been told that you never get a second chance to make a first impression. Well, I'm here to tell you that first impressions, while not unimportant, are not insurmountable."

Ooh, I thought. This looks interesting -- I can get another person's take on how to deal with ableism and prejudice.

I never made it even half-way through the show. Unfortunately, that was the longest string of speech from John Robinson, himself... The rest of the talking (except for brief single sentences), came from his father, grandmother, family friends, elementary school teachers, et alia (ad nauseum), about how plucky and inspirational he was, growing up -- just like a normal person!

And, apparently, the only way to deal with ableism is to be a Super!Crip: never ask anyone to accomodate your needs, and to never, ever, let anyone see you get frustrated, tired, or upset.

(It could well be that John Robinson himself has a different memory of how he got to where he is, but this is the story that the documentary-makers fashioned out of what they saw. What I really wish I could have seen is that lecture he gave to those college kids. I like a good college lecture. I'm a geek like that).

---
On a slightly happier note: I made a new icon from one of my favorite National-art-making-month drawings, from this year. Do you like it? The question mark is in Garamond font, and the Exclaimation point is in Falstaff Festival...

Profile

capriuni: Text: If you want to be a Hero, be Good to the Storyteller. (Default)
Ann

May 2017

S M T W T F S
  123456
78910111213
14151617181920
21222324252627
28293031   

Syndicate

RSS Atom

Most Popular Tags

Style Credit

Expand Cut Tags

No cut tags
Page generated May. 29th, 2017 03:06 pm
Powered by Dreamwidth Studios