kestrell: (Default)
A couple of Friday nights back, I began having a bad earache and sore throat, and Alexx offered to take me to urgent care, and I said no (because I tend toward the attitude that unless there's bleeding from the eyes, it's not a real emergency), but then it got worse, so we went off to urgent care the next day, and, after much describing of symtoms and querying of which ear--to which I would occasionally say, "The one that used to be my good ear"--they peered inside and said I had a ruptured eardrum and it was infected. (What they really said that where there should be ruptured tissue there was no tissue at all, which was something of a mystery.) They gave me some ear antibiotics and recommended I follow up with my
otolaryngologist. So on Monday Alexx and I went to the ENT and I was sitting in the examination room with the ENT's assistant asking me about the problem, and then she asked me a question which sounded like "So you're having [insert garbled word here] hearing?" and I automatically said, "What?" so the doctor came a liiiiiittle bit closer and said just a liiiiittle bit louder "You're having duplicitous hearing?"

Well, that sounded about right, but not like the sort of questions doctors ask, so I asked again, "What?" and I still got "You're having duplicitous hearing?"

And this is when I decided that someone had slipped an evil Babel fish in my ear. It's not that I don't hear *most* of what people say, it's just there is usually one or two words in there that I'm pretty certain isn't what the speaker said.

(This is actually common with sensory impairments: the brain is like a Mad Lib machine, and if there is a blank space, the brain will pop something into that space, even if it is completely out of context. Visually impaired people will see strange and bizarre hallucinations, which is called Charles Bonnet Syndrome.)

But this meant by the time the ENT did come into the room and ask questions and asked how my hearing was I could say, "Did you ever read the Douglas Adams books?" and he emphatically replied, "Every one," so then I could explain about the evil Babel fish.

So, I wanted to post my evil Babel fish theory here in case it helps another hearing-impaired person explain things.

Also, my otolaryngologist said I didn't have a ruptured eardrum, it was a middle ear infection, so my hearing in that ear should return sooner or later. I'm not even going to wonder how my missing eardrum magically reappeared--perhaps I'm part salamander...
kestrell: (Default)
Kes: I haven't read this, I just saw it on Bookshare.

Disability, Space, Architecture: A Reader
by Jos Boys (2017)
Disability, Space, Architecture: A Reader takes a groundbreaking approach to exploring the interconnections between disability, architecture and cities. The contributions come from architecture, geography, anthropology, health studies, English language and literature, rhetoric and composition, art history, disability studies and disability arts and cover personal, theoretical and innovative ideas and work. Richer approaches to disability - beyond regulation and design guidance - remain fragmented and difficult to find for architectural and built environment students, educators and professionals. By bringing together in one place some seminal texts and projects, as well as newly commissioned writings, readers can engage with disability in unexpected and exciting ways that can vibrantly inform their understandings of architecture and urban design. Most crucially, Disability, Space, Architecture: A Reader opens up not just disability but also ability – dis/ability – as a means of refusing the normalisation of only particular kinds of bodies in the design of built space. It reveals how our everyday social attitudes and practices about people, objects and spaces can be better understood through the lens of disability, and it suggests how thinking differently about dis/ability can enable innovative and new kinds of critical and creative architectural and urban design education and practice.
kestrell: (Default)
The article is in part an opinion piece by Dr. Sajay Gupta, a popular scientist, but it's also a fascinating examination of how scientific research can contain biases which have a really big impact on attitudes not only in the public, but in doctors themselves.
kestrell: (Default)
Kes: I don't know if the statistics have radically altered in recent years but, as I understand it, approximately half of the people who use quote special formats unquote such as those found on have print disabilities, such as dyslexia, rather than visual impairments. The statistics are not trivial for, as this blog post mentions, about ten percent of all student-age children may be dyslexic, and it bears no relation to intelligence (for example, research suggests that Winston Churchill and Albert Einstein may have been dyslexic). It bothers me that I still hear so many people dismiss readers who use text-to-speech as "not *really* reading," because such an attitude not only is a sort of put-down, but completely overlooks all the active cognitive elements which the reader is still performing, such as use of symbolic thinking, active imagining, making connections with other books and personal experience, making hypotheses about what will happen next, visualizing characters and action; reading by listening is far from a passive act.
kestrell: (Default)
Kes: apologies for the wonky formatting, I'm too zombified today to fix the margins.

Hoping That Art Helps With Healing
Gretchen Ertl for The New York Times
Published: March 14, 2012

CHILDREN’S HOSPITAL BOSTON, inside this city’s warren of top-notch hospitals, is a temple of
drawing patients and families for some of the country’s best medical care. But it is probably not where they come expecting to find technical art instruction.

On a recent afternoon, however, Jason Springer, an educator from the Museum of Fine Arts, Boston, was here to provide just that, leading a group of patients
and their visitors in the making of Chinese lanterns.

“So, this is your brush, this is your inkwell, this is your ink stick,” said Mr. Springer, indicating sticks of sumo ink scattered across three tables in
the hospital’s patient recreation center. “The more you rub it, the darker the ink is going to be.”

Behind Mr. Springer, a projector showed images of Chinese and Japanese brush paintings from the museum’s extensive collection of Asian art. “Take some inspiration
from the mountains and the trees,” he said.
continued below cut )


Feb. 3rd, 2012 10:54 am
kestrell: (Default)
Usually around the first of the month I have a list of things I need/want to buy, but I woke up this morning and realized that, except for some new socks, I really didn't want anything.

So I just donated some money to
4 Paws for Ability
after reading this great NY Times article
--I love the way that they get animals to people who have invisible disabilities, or who may be worried that they quote aren't disabled enough unquote to qualify for a dog.

Also, and I'm embarrassed to admit this, but those dogs with the butterfly ears sound adorable.
kestrell: (Default)
(Kes: irony 1alert)
"When amputees participate in sports, they call it courageous. Once you become competitive, they call it cheating." Hugh Herr
kestrell: (Default)
Kes: I note that the gay character discussed is characterized by his aloneness, his lack, which leads to a comparison with the physically disabled and non-normative, and ultimately the statement that such oddities always desire to be other than what they are, namely, "chaste, healthy, firm, upright, hard...his opposite...".
This is one of the main reasons I often use the word "queer," because ideas about non-normativity in fiction and media images are often layered over and/or next to one another in ways which conflate say, physical non-normativity with sexual non-normativity, and both are held up as "the reverse, the obverse, the wrong side."
kestrell: (Default)
Kes: Very awesome post on Clynes coining of the word cyborg--my own definition sticks pretty close to the original: cyborgs are humans who adopt technology in order to survive and thrive in a harsh environment.

block quote start
Alexis Madrigal
SEP 30 2010, 2:49 PM ET |

We're gathered here today to celebrate Manfred Clynes. Fifty years ago, he coined the word "cyborg" to describe an emerging hybrid of man's machines and man himself. The word itself combined cybernetics, the then-emerging discipline of feedback and control, and organism.

The word appeared in an article called "Cyborgs and Space," in the journal Astronautics' September 1960 issue. Just to be precise, here's how the word was introduced:

"For the exogenously extended organizational complex functioning as an integrated homeostatic system unconsciously, we propose the term 'Cyborg,'" wrote Clynes and his co-author Nathan Kline, both of Rockland State University.

From that catchy description, it might not have been immediately apparent that Cyborg was destined to become the label for a profound myth, hope and fear specific to our era. But Clynes knew from the beginning that the phenomenon he'd identified was deeply important.

I reached him at his home in Sonoma, California, where the 85 year old is working away on perfecting Beethoven's last quartets.

"I expected the word cyborg to survive," Clynes said, although he realizes it has been emptied of some of its original meaning. "It's interesting in the history to see how a word can have a life of its own."

Tim Maly's incredible
project to catalog 50 responses to the word cyborg
ends with this post -- and the breadth and depth of the contributions is a testament to the vigor of the word's post-Clynes life. But his original conception is still important, and captures something that I think has been lost in our current definitions.

Here's the thing: For most of us, cyborg ends at the human-machine hybrid. The point of the cyborg is to be a cyborg; it's an end unto itself. But for Clynes, the interface between the organism and the technology was just a means, a way of enlarging the human experience. That knotty first definition? It ran under
this section headline: "Cyborgs -- Frees Man to Explore."
block quote end


Sep. 3rd, 2010 10:05 am
kestrell: (Default)
Those of you who know me in meatspace have probably heard me discuss the concept of helping, but I just thought I would revisit it briefly because I just moments ago experienced an incident of someone adding aggravation to my life due to his helping.

I was calling in a prescription refill, specifically, my birth control pills, which I have been taking on a three week cycle instead of the normal four, because skipping the fourth week significantly reduces the week of migraines I was getting during menstruation. The pharmacist I had today insisted that I was taking the pills incorrectly and, after my explanation, then insisted that the pharmacy quote could not unquote fill the prescription and I would have to get the doctor to make out a new one.

Now, obviously the pharmacy has been filling this prescription just fine for months now, so the quote could not unquote was suspect. I expect what he meant was the insurance company would not pay for it, which I knew already and have usually just said, fine, I'll pay for it as it is not a horrifically expensive prescription, but the pharmacist would not let me get a word in, until finally I got, shall we say, more emphatic.

So, to review:

1. Help should be treated like any other four-letter word referring to a shared behavior, namely, it should be safe, sane, and consentual.

2. In offering information or explanations, try to use the correct words to reflect what you actually mean. In my experience, the phrase "cannot" is frequently used incorrectly by people who are not in full possession of actual facts. Maybe it's a geek thing, but when people tell me "can't" I usually immediately question the statement, as what most people seem to actually mean is "I don't know."
kestrell: (Default)
Monday, July 26
12:00-3:00 PM
Boston Common
(Corner of Charles and Beacon Streets)
Keynote Speaker: John Hockenberry
There will be live entertainment by Comedian Jonathan Katz, the Matt Savage Trio, and the Tommy Filiault Band.
Before the event, there will be a March leaving from the corner of Tremont and Boylston Streets at 11:15 AM
For more information go to

This message was posted on the MAVIS mailing list
kestrell: (Default)
can be read here

Here's a snippet:
block quote start
Art and Activism: Etsy Products for People with Disabilities
by Kestrell
Published on September 21, 2009 in
Photo by
Kestrell in the Slytherin dress robes a friend made for her.


When I was growing up, I was one of those art geeks who went to museums for fun, was always drawing in the margins of my class notes, and took requests
from other kids to draw horses, unicorns, mad scientists, and various monsters.

After I went blind, finding new ways to be creative became something of an obsession. I learned to sew. I learned to tie-dye. I'm always searching for tactile
art, which can include anything from found object sculpture to costumes to textile arts.
block quote end


kestrell: (Default)

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