Science!!!

Dear parents,

I am writing to invite you to participate in an online discussion forum. This is part of a research study about the friendships of children with cerebral palsy (CP).
Results of this study will help professionals (teachers, speech-language therapists, support staff and others) to provide better supports to children with CP to promote their social involvement.
Parents who participate in the study will join in a focus group conversation on an Internet message board with other parents of children who have CP.
If you have a child with cerebral palsy between 5–11 years old, and would like to join in the discussion, or if you have any questions about the study, please contact Adam Bowker at Penn State University.

email: adam.bowker at psu.edu  (replace the at with @)
phone: 8l4-865-585o

Stand back. I'm going to do SCIENCE!

more cyborg stuff

IEEE has a breakdown of the costs to go as close to full-cyborg as it is medically possible at this time.

On being a Cyborg

I’ve blogged on Aimee Mullins before. People like her really reinforce my thinking that we need to reassess how we define “disability” as a society. It’s not about differences between what one person can do compared to “normal” people.

She recently wrote an essay about athletes like Oscar Pistorius, who I’ve written about, also. We are augmenting ourselves with technology—both the abled and disabled—and it isn’t going to stop.

The fact is, no two people are the same. And there isn’t one “bell curve” that we can sort people onto, there are countless. Everyone is good at, and poor at, different things for different reasons. And our traditional view of “normal” totally breaks down for individuals who are truly exceptional… beyond 99th percentile (or far below 1st percentile).

As another example (also from South Africa), consider runner Castor Semenya, who is intersexed. Semenya has male genes and features, but she competes as a woman. Unfair? World class athletes are genetic freaks of nature anyway; why are certain specific genetic oddities “unfair” and others are acceptable?

You have to look at how people to how they coexist with their environment. Semenya isn’t “disabled” and, other than having no legs, neither is Aimee Mullins. And just like how materials scientists can engineer carbon fiber legs, architects can add ramps and elevators, surgeons can implant sensory devices… society is comprised of us. We are the raw materials. We can engineer ourselves and our relations with one another to make for a more hospitable world for everyone, even those beyond the top and bottom 1%ile.

Disability in Pop Culture 9—Glee

Artie Abrams from Glee

Glee (9pm Wednesdays on FOX) is a musical comedy about a high school glee club. It has a sortof Freaks and Geeks vibe about it in that it talks about the divide and also the overlaps between jock and nerd cliques.One of the members of the Glee Club from the beginning has been Artie.

It has a rather large ensemble cast, so up to this point Artie hasn’t really had an episode yet. Last night it was his turn. The school will only provide a standard bus for the club to go to a competition and the club needs to raise the money to rent a wheelchair-accessible bus

As a bonus, there was a subplot about the evil cheerleading coach allowing a girl with Down Syndrome onto the cheerleading squad. (Also, damn the writers for making the villain of the show into a sympathetic character!) Yes, she has a sympathetic moment even after earlier in the episode she gives a hilariously incomprehensible speech about how wheelchair ramps encourage laziness in the ablebodied students by giving them a way to avoid the stairs.

 

Invictus

William Ernest Henley (1849–1903) was an amputee who persevered despite his disability. He was the physical inspiration for Robert Louis Stevenson’s famous amputee character Long John Silver. His daughter was said to have inspired, and coined the name of, J.M. Barrie’s character Wendy.

Probably his greatest contribution to humanity was this poem about resilience, written shortly after his leg was surgically removed (by none other than Joseph Lister, inventor of sterile surgery) to prevent the spread of a tuberculosis infection.
Invictus

William Ernest Henley

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll
I am the master of my fate:
I am the captain of my soul.

Fail

Metaplay 5

Some definitions:

Game: Play with rules.

Rule: A constraint upon behavior that is imposed by social convention.

Play: Good luck with that one.Better scholars than me have tried and failed to define play.

Examples:

Suck on this Thing I Found

This is a popular play activity performed by infants everywhere with all manner of intended and accidental toys. Is it play? I would say, yes. Does it have rules? No, it does not. It is play, but not a game.

Peek-a-boo (novice player)

Player 1 initiates play by hiding and abruptly returning while vocalizing. Player 2 is startled by Player 1 and reacts. Player 2 realizes that Player 1 is not a real threat and that his or her startle reaction was unwarranted. Comedic irony ensues. (The foundation of all things that are funny is, “I’m in distress; oh, wait, no I’m not!” and it starts right here.)

In this play, Player 1 is using rules, but Player 2 is reacting only with basic physiological/emotional responses. I suppose it counts as a game for Player 1, but not for Player 2.

Peek-a-boo (expert player)

Player 1 initiates play by hiding. Player 2 recalls this from earlier and anticipates the forthcoming abrupt return. Player 1 returns, Player 2 pretends to be startled, reenacting the novice game, and comedy ensues. Or players skip that step altogether and jump straight to the giggling. At this point, the startle effect is assumed, but not obligatory.

A symbolic transformation has occurred! This is a social convention, and thus it is a rule. Player 2 has joined in the game.

Gravity

Player 1 drops Cheerios from high chair tray. They fall on the floor as opposed to hovering in space of falling to the ceiling. (Not a rule, natural principle of the universe).

Dog eats Cheerios. (Not a rule. More of a natural consequence. Although this does have some qualities of agency, in that the dog’s motivations and behaviors are its own, unlike gravity, which has no agency.)

Player 1 drops spoon. It makes a different sound upon landing than the Cheerios. Dog licks, but does not eat spoon. (I’m beginning to sense a pattern here in that objects tend to fall toward the floor consistently. More data are required to confirm)

Player 1 drops sippy-cup. A third unique sound occurs, perhaps accompanied by more bouncing and rolling than the previous objects.

Unwitting Player 2 returns cup, but not the Cheerios or the spoon. (Okay, now we have a socially established rule. How consistent is this rule? Gravity is pretty persistent, but how many times will Mom give back the cup before the pattern changes? What else will she give back?)

New definition:

Goals: Goals are motivations that are established before the play activity begins. Much play involves behavior directed toward an intended outcome, but there is a difference between intentions that arise as a reaction to things inside the play frame versus intentions that come from outside the play frame.

Examples: Chase each other around in circles

Any number of player run around in imitation of one another in an attempt to catch one another. (This game has pretty simple rules, but it doesn’t really impose a goal.)

Tag

Like above, but players run away from a specific player who is intending to catch them. Who the chaser and chasees are change depending on some criteria, most commonly a touch indicating one player has caught the other. (While it looks on the surface similar to the above game, Tag one is much more goal-oriented than the Chase. Tag is much more sophisticated and played by older children.)

Notice that a goal is not the same as a win-condition. Tag is not a game one can “win,” although one could be quite competitive in pursuit of the game’s goal.

Sadly, I’ve started to realize that most of this is not contributing to my dissertation at all, even though it is important and useful to my thinking. I don’t really need this model to make the Pentad work as an AAC intervention. It may be a separate paper at some point.

Disability in Pop Culture 8

Ghost in the Shell &

Ghost in the Shell—Stand Alone Complex

The Japanese manga/animé series Ghost in the Shell actually is (at its deepest levels) mostly about people with super-disabilities—although ostensibly the theme is about humans’ relationship with the machines they build and how that relationship changes us.

What is a “super-disability” you ask? Consider South African sprinter Oscar Pistorius.

Oscar, a double amputee, created a stir in 2007 because he came within 0.75s of qualifying for the South African Olympic Team. Not the Paralympics—the Abled Olympics. There was some debate as to whether he should be permitted to compete because his prosthetic limbs give him an unfair advantage.

We’re not quite there yet, but what happens when the artificial becomes better than the real thing?

This is a key question in Ghost in the Shell and Ghost in the Shell: Stand Alone Complex.

Mobility for Toddlers

It has always astonished me how long it takes kids to get powered mobility. Not being able to move around has profound effects on cognitive and language development. Check out these robots:

(However, please don’t read the YouTube comments. YouTube comments are probably the most cognitively impaired language output on the planet. )

Bank of America has a stupid

Reuters reports the following story:

No thumbprint, no money, bank tells armless man

MIAMI (Reuters) – A bank in Florida refused to cash a check for an armless man because he could not provide a thumbprint.

“They looked at my prosthetic hands and the teller said, ‘Well, obviously you can’t give us a thumbprint’,” Steve Valdez told CNN on Wednesday.

But he said the Bank of America Corp branch in downtown Tampa, Florida, still insisted on a thumbprint identification for him to cash a check drawn on his wife’s account at the bank, even though he showed them two photo IDs.

In the incident last week, a bank supervisor told Valdez he could only cash the check without a thumbprint if he brought his wife in with him or he opened an account with them.

“I told them I neither wanted an account with them and couldn’t bring my wife in because she was nowhere close by,” Valdez told CNN.

Bank of America said in a statement cited by CNN: “While the thumbprint is a requirement for those who don’t have accounts, the bank should have made accommodations.”

Valdez said his treatment by the bank violated the U.S. Americans with Disability Act requiring institutions to provide reasonable accommodation to disabled persons.

(Writing by Pascal Fletcher; editing by Todd Eastham)

It would be funny it it weren’t so disturbingly stupid.