I Can Haz Guest Post?

I was asked by one of the writers of a supa sweet blog, YA Highway, to write a guest post on Great Characters With Disabilities in YA and MG (young adult and middle grade) novels. I'm rawther pleased with how it came out. Go! Read!

Also, for no specific reason, here are two super rad photos from 2010's Peak-to-Peak Pedal. In both shots I am the one in the red helmet, fourth in the line.

Cool Bits of News About 2008 Beijing Paralympics and Olympians With Disabilities

The Paralympic Games in Beijing will start on September 6th. Learn about the twenty Summer Paralympic Sports at this website! Did you know that this year Rowing is a new event at the Paralympic Games? Do you know how to play goalball? Brush up there. Do you know about the different classifications for different events? Lots of great info on that site. Did you know the Summer Paralympic mascot is a cow? Neither did I. Apparently,

Cows, symbolic of a down-to-earth, diligent, staunch and never-say-die spirit, are adopted to show the unremitting spirit of athletes with a disability in being the best they can be. It dovetails with the upbeat spirit of Paralympians and the concept of "Transcendence, Equality, Integration" of the Beijing Paralympic Games.

The determined, optimistic and diligent spirit of cows reflects a positive attitude to life. The Paralympic Games calls for people with a disability to enjoy the same rights to compete in sports as anyone else, and to achieve sporting excellence and inspire and excite the World, and thus develop their strength to add vigor and vitality to social progress.

Yes, those cows and their never-say-die spirits...Hmm. The Olympic mascots are: a fish girl, a panda boy, a fire boy, an antelope boy, and a swallow girl.

Watch the Paralympics

This site, Paralympic Sport TV, will show news and events from the Paralympic Games, which start on September 6th, 2008. It is run by the International Paralympic Committee. Watch a cool trailer here. I don't know how much coverage they will feature.

If you live in the UK, details of Paralympics coverage on TV can be found here. They will air over six hours of Paralympic sport per day for twelve days.

In Australia, the ABC will broadcast over one hundred hours of Paralympic coverage. That's the most Paralympic coverage of any country. The schedule is here.

As far as I can tell, there will be little to no coverage of the Paralympic Games in the United States. A nice person from the US Paralympic Team website informed me that hopefully there would be news about some Paralympic coverage. I will keep you posted! I'm guessing there should at least be some televised specials. If anyone knows of any scheduled coverage, leave me a comment!

And finally! This year marks (I believe) the first time that an athlete will compete in the both Paralympics and the Olympics. South African swimmer Natalie du Toit, who I wrote about before, will compete in the Olympic 10 km open water swim ( a new event) as well as six different Paralympic swim events.

Unfortunately, Oscar Pistorius did not qualify for the SA Olympic team in either the individual or relay competitions. He will represent South Africa in the Paralympics and he plans to continue training in hopes of qualifying for the 2012 London Olympics.

In addition, Polish table tennis champ Natalia Partyka will compete in both the Olympic and Paralympic table tennis events. She is missing her right forearm and she competes left handed.

Images: Top: A cute little brightly-colored cartoon cow is the 2008 Paralympic mascot. A caption states her name in English and Chinese as Fu Niu Lele.

Bottom: Natalia Partyka, a young white woman missing her right forearm, strikes an athletic pose as she prepares to return the ball in a table tennis match.

Excessive Busy-ness

I've kept very busy over the past week, what with a new long commute to the job and trips out of town and generally hustling and bustling. I will try to post some pics soon. In the meantime, here are some great links I have seen this week:

A post at Disability Studies, Temple U about when independence may not be the ultimate and desirable goal of everyone with disabilities. This one really got me thinking. As the author acknowledges, she is somewhat going 'against the party line' on this one. It's a very thoughtful piece that in turn gave me a lot to think about.

Dave over at Chewing the Fat always has a lot of food for thought, but this post stood out for me a lot more than usual. He writes about the way he is treated as a person with a physical disability while out shopping. (Hint: the answer isn't 'like a professional adult man doing his shopping.') The demeaning and degrading attitudes of others towards PWD are hardly believable and yet very common.

A very sweet and moving piece about Rob's daughter Schuyler gaining her 'big girl voice.' Rob always writes amazing posts, and this one is especially wonderful.

And oh yeah! The latest Disability Blog Carnival is up at Pipecleaner Dreams. The topic is 'celebrations.' Ashley's Mom has done a great job on this edition and thrown in a coconut cake recipe for good measure! There are lots of interesting posts in this one. I meant to join it but then life took off at a high speed and I didn't get to. Hopefully I will be in the next Carnival.

ETA: Go watch this great video! If you are in a sour mood, smiling is guaranteed by the end! I think it's a gum commercial. But there's no gum in it. Just one man traveling across seven continents spreading a silly dance to locals young and old. If we could get this guy into the UN I think it would put an end to wars within the week. Go! Watch it!

Have a fantastic fourth of July and be safe around barbeques and fireworks and lakes and rivers and all the other summer holiday hazards.

Punk Band With Members With Developmental Disabilities: Heavy Load

Definitely click here to check out 'Heavy Load,' a punk band from the UK. From boingboing.net, we learn that the band's mission is "to demonstrate that disability rocks"! They also have a campaign (in the UK) called Stay Up Late, to help people with developmental disabilities advocate for themselves to be able to stay out late enough to go to a show. Most punk/rock/pop shows last until 11 or 12, but many adults with cognitive impairments aren't permitted or aren't able to stay out so late. Also check 'em out in the NY Times!

Check IFC for a rerun of their documentary, which aired on June 23rd. It's on my DVR and I am hoping to watch it soon!

Image: The punk band Heavy Load playing in a tent. Shown are two guys jamming on guitars and a drummer with Down Syndrome rocking out at a black drum set.

Actors and Characters With Disabilities: RJ Mitte as Walter Junior on 'Breaking Bad"

The LA Times says that "although nearly 20% of Americans from the ages of 5 to 64 have some kind of disability, less than 2% of the characters on TV display one, and only one-half of 1% actually have speaking parts."

This year a new show on AMC debuted a great kid actor with a disability in a great role. The show is Breaking Bad starring Brian Cranston (who you may recognize as the dad from Malcolm in the Middle) as Walter White, a meek, middle-aged high school chemistry teacher diagnosed with terminal cancer. In desperation, Walter turns to creating and selling illegal drugs to get money for his treatment and to support his wife and son after his death. Cranston's portrayal is nothing short of incredible and I hope he gets an Emmy for his work on the show. Season One was fantastic, and I anxiously await Season Two in 2009. I would highly recommend this show to anyone (but it is DEFINITELY not for kids. Ok for teens though, with a strong anti-drug message).

Walter's son, Walter Junior, is a high school student with cerebral palsy. He walks with crutches and has somewhat slurred speech. Other than that, he is a typical kid, dealing with his disability and struggling to deal with his father's diagnosis of cancer. It is a strange world we live in when I can praise a show merely for having a disabled character who is realistic, not played for pity or tragedy, and portrayed by an actor with a disability, but there you go. Breaking Bad is a perfect example of how to have an interesting, well-rounded character with a disability.

The actor, R.J. Mitte, does a fantastic acting job in my opinion. He is believable and he has great comic timing. His character is sarcastic, in some ways immature, and in other ways wise beyond his years. Besides that, he has all-American boy good looks. I'd say he is a cutie-pie but if one were fifteen it would be fair to call him hunky. I'm hoping that we will see him in more roles after this one.

Watching the first episode, there was some debate in the Impossible Universe Household as to whether he had a disability or not. The matter was settled a few weeks later when I ran into him at a drugstore around the corner from my house (actor-spotting: a perk of living in LA, I guess). I wanted to tell him that he was great on the show, but I decided not to bug him because he's just a kid (14 or 15 I think). He was ahead of me in line patiently trying to buy a toy for his tiny outspoken sister, who was bouncing all around him making various demands. He did have CP, but a more mild form of it that his character Walter Junior-no crutches and somewhat clearer speech. So he does have a disability, but he is also 'acting' his disability. Unlike many tv actors, he was very handsome in person.

R.J. Mitte in USA Today
R.J. Mitte in LA Times
R.J. Mitte on the Breaking Bad website

I'll leave you with a quote from the LA Times article about him:

The people that are the guardians of storytelling in America claim to be the most creative people that there are. Yet, if you remember in elementary school and kindergarten, most kids had the eight Crayola box. That’s what most of the people in Hollywood are using. Eight crayons. They have the nice, handsome white guy, the beautiful white girl, sidekicks, a couple of others. I’m saying if you are really going to tell the story, you need the 64 Crayola box.

Image: R.J. Mitte as Walter White Junior. A handsome white teenager with shaggy brown hair looking away from the camera.

Where do the presidential candidates stand on disability issues?

I created this quick guide so that the disability community (including people with disabilities, parents, friends, and allies) can see what the candidates intend to do as relates to people with disabilities. While health care is a hot-button issue in this campaign, services for people with disabilities isn't. I started researching it because I was curious and I figured others would be interested as well.

First up are some resources for learning about the two 2008 presidential candidates and about people with disabilities and voting. Next up is some information about where the candidates stand on issues specifically relevant to the disability community: Health Care, Medicare, Medicaid, People With Disabilities, Injured and Disabled Veterans, and Autism. I have links back to the original sources where possible. Almost all this info comes from the candidates' own websites. Please let me know if this was helpful, what other issues I should add, or if you know any other relevant information or links that should be here by leaving a comment. Please share this with anyone in your life who you think may benefit from this guide. This post may be sent to others by clicking the little envelope at the bottom of the screen. Enjoy!

Resources:
The AAPD Presidential Election Action Center
AAPD Info About Accessible Voting
Dontblockmyvote.org, a UCP site about Accessible Voting
The ADA Checklist for Polling Places
Info About People With Developmental Disabilities and the Right To Vote
Info on Voting for People with Cognitive and Visual Disabilities

NY Times Election Guide to Candidates
Barack Obama on the issues
John McCain on the issues

Issues:

Health Care:

McCain: Too much to include. Check it out here. Note that his website states: "As President, John McCain Would Work With Governors To Find The Solutions Necessary To Ensure Those With Pre-Existing Conditions Are Able To Easily Access Care. "

Obama: Too much to include. Check it out here. Note that his website states: "Guaranteed eligibility. No American will be turned away from any insurance plan because of illness or pre-existing conditions."

Medicare

McCain: Reforming The Payment System To Cut Costs. We must reform the payment systems in Medicaid and Medicare to compensate providers for diagnosis, prevention and care coordination. Medicaid and Medicare should not pay for preventable medical errors or mismanagement. (from here)

Obama:

• "Obama will require that providers that participate in the new public plan, Medicare or the Federal Employee Health Benefits Program (FEHBP) utilize proven disease management programs. This will improve quality of care, give doctors better information and lower costs.
• Reforming The Payment System To Cut Costs. We must reform the payment systems in Medicaid and Medicare to compensate providers for diagnosis, prevention and care coordination. Medicaid and Medicare should not pay for preventable medical errors or mismanagement.
• Finally, Obama will work to increase the use of generic drugs in Medicare, Medicaid, and FEHBP and prohibit big name drug companies from keeping generics out of markets.
• Barack Obama is also committed to ensuring that disabled Americans receive Medicaid and Medicare benefits in a low-cost, effective and timely manner. Recognizing that many individuals with disabilities rely on Medicare, Obama worked with Senator Ken Salazar (D-CO) to urge the department of health and human services to provide clear and reliable information on the Medicare prescription drug benefit and to ensure that the Medicare recipients were protected from fraudulent claims by marketers and drug plan agents." (from here)

Medicaid

McCain: Reforming The Payment System To Cut Costs. We must reform the payment systems in Medicaid and Medicare to compensate providers for diagnosis, prevention and care coordination. Medicaid and Medicare should not pay for preventable medical errors or mismanagement. (from here)

Obama:

• "Expansion Of Medicaid and SCHIP: Obama will expand eligibility for the Medicaid and SCHIP programs and ensure that these programs continue to serve their critical safety net function.
• Obama will work to increase the use of generic drugs in Medicare, Medicaid, and FEHBP and prohibit big name drug companies from keeping generics out of markets.
• Barack Obama is also committed to ensuring that disabled Americans receive Medicaid and Medicare benefits in a low-cost, effective and timely manner." (from here)

Disabilities:

McCain: John McCain's home page does not include a section about disabilities. See his section on Veterans below.

Obama: Obama has a nine page document on his "Plan To Empower Americans With Disabilities." Here is the synopsis: "First, provide Americans with disabilities with the educational opportunities they need to succeed. Second, end discrimination and promote equal opportunity. Third, increase the employment rate of workers with disabilities. And fourth, support independent, community-based living for Americans with disabilities." (see links to read the whole plan)

Injured and Disabled Veterans:

McCain: "John McCain has been a leading advocate in the Senate for disabled veterans throughout his entire career. He fought for nearly fifteen years, introducing numerous bills, to ensure that veterans with service-connected disabilities can receive the retirement benefits that they have earned, as well as the disability compensation benefits that they are entitled to. He has also worked to ensure that veterans can have their disability claims processed in a timely manner, working with the VA to rectify its huge backlog of claims and providing additional resources for that purpose."

Obama: "Strengthen VA Specialty Care: Advances in technology have meant that the survival rate for U.S. servicemembers is higher now than in any previous conflict. There will be a long-term need for strengthened specialty care within the VA, including additional polytrauma centers as well as centers of excellence for Traumatic Brain Injury (TBI), PTSD, vision impairment, prosthetics, spinal cord injury, aging, women’s health and other specialized rehabilitative care. In the Senate, Barack Obama has supported the expansion of PTSD and TB centers of excellence and cosponsored an innovative bipartisan measure to encourage students specializing in vision care and rehabilitation to work in the VA. As president, he will expand the number of these centers of excellence and invest in specialty care." (from here)


Autism:

McCain: "As President, John McCain will work to advance federal research into autism, promote early screening, and identify better treatment options, while providing support for children with autism so that they may reach their full potential."

Obama: "Barack Obama believes that we can do more to help autistic Americans and their families understand and live with autism. He has been a strong supporter of more than $1 billion in federal funding for autism research on the root causes and treatments, and he believes that we should increase funding for the Individuals with Disabilities Education Act to truly ensure that no child is left behind."


Image: A woman in a wheelchair wearing a green sweater is starting to open a double door. The left door has a sign that reads "Polling Place Vote Here" and the right door has a big blue-wheelchair-guy sign.

Abilities Expo Anaheim 2008

This Sunday, someone invited me to the Abilities Expo in Anaheim. There was lots of interesting stuff. I also went to a presentation by Craig Kennedy, of Access Anything. I took a couple of pictures.

The absolute coolest technology I saw while I was there belonged to a little girl, about ten years old, in a wheelchair. She was a double amputee and she had on two racing blade prosthetic legs for running (like Oscar Pistorius). (I think she was in a wheelchair because, while the blades are perfect for sprinting, I believe they are very difficult to walk in.) Style-wise, she had him beaten by miles though, because the sockets of her prosthetics were Hello Kitty-themed. Yes, that's right, Hello Kitty prosthetic legs for racing. I didn't take a picture because I didn't want to bother her, but rest assured that she was awesome. Her competitors on the track probably fall over in the starting blocks, hit by the forceful waves of little-girl-coolness coming off of her. I wonder if she will be eligible to qualify for the 2016 Olympics...Pistorius is breaking ground for kids like her this year.
My favorite pics:

For those of you who are concerned that your wheelchair doesn't match your chopper, I present this beauty, in black with neon green flames.


And for those of you concerned that your motorcycle and sidecar don't match your wheelchair and your electric guitar, "Colours Wheelchair" has got you covered.


This kid is trying to think of a way to ask his mom to buy him his very own iBot Wheelchair. Must...have...awesome...chair...please...mom...buy me one!

Craig Kennedy had lots of interesting things to say about adaptive recreation. First, he said that you can't do adaptive sports without "PVC pipe and duct tape." Totally true. Adaptive sports equipment is sometimes expensive, hand-engineered, and built by hand to high specifications. Even so, adapting that equipment to the particular size and shape of a person can still be a challenge--duct tape is the quickest way to jury-rig a solution for an individual. One quick example: a bi-skier with lots of arm strength but poor hand grip strength could have their hands in their mittens duct-taped onto their outriggers in a gripping position, so they don't have to struggle with a grip that they can't maintain by themselves.

Mr. Kennedy talked about some interesting things I hadn't heard of before, like adaptive wakeboarding and this wheelchair-accessible tent. The crowd at his talk was small, but I could feel that they were getting really enthusiastic about adaptive sports as he talked. When the talk ended, I had to sneak over to a young man sitting across from me named John to tell him about USARC's skiing program and summer program. He had never heard of it and he looked excited, so maybe I'll see him on the slopes next year! I'll leave you with my favorite quote from his talk:

Every sport out there has been adapted for people with disabilities. The last thing we will adapt will be people's attitudes-about what we can do, what we are capable of doing.

Images: 1. A snazzy chopper motorcycle with a manual wheelchair hooked onto the back of it. 2. A black motorcycle with orange flames has a sidecar containing a manual wheelchair with a leopard print seat. On the ground beside it is a matching electric guitar. 3. A little boy in a baseball cap is standing and staring up in awe at a man in an iBot, a wheelchair that raises up on two wheels. The man is leaning down and chatting to the boy's mother. A banner in the background reads: 'Go where you want to go...Do what you want to do.'

Novel Characters with Disabilities: Postsingular, by Rudy Rucker

I love reading novels, particularly fantasy and science fiction. Too often, a character with a disability is either a. tragic, b. inspirational, or c. the narrative is focused on the person's disability to the exclusion of any personality traits, hobbies, feelings, or interests. There are numerous exceptions to this, but they are still quite rare. The interesting, well-developed character who has a disability is practically on the endangered species list.

I recently read a book that made me want to shout its name from the rooftops! There are eight or so main characters, and one of them has autism. He was a fully realized character, he was a hero, and he was definitely autistic. The book is Postsingular, by Rudy Rucker (Tor Books, 2007). It can be found in any bookstore or downloaded for free from Rudy's website.

The novel starts out with Chu as a little boy. Chu has autism. He can only repeat words that he hears, but he cannot use them purposefully. He throws tantrums daily and he loves tv and videogames. The work of caring for him puts a strain on his parents' marriage. His father says to his mother, of Chu's future,

“Don’t give up,” said Ond, reaching out to smooth the furrow between Nektar’s eyebrows. “He might get better on his own. Vitamins, special education—and later I bet I can teach him to write code.”

“I’m going to pray,” said Nektar. “And not let him watch so much video.”

As Chu grows up in the book, he learns to express himself verbally, his intelligence shines through, and he makes some friends. All these details are very typical of kids with autism. When nanobots are destroying the earth, Chu's father asks him to memorize a very long string of code, a sort of computer virus, that can reverse the damage that's been done. Chu takes his task very seriously. He is able to save the world (I'm not giving away the ending--the world-saving takes place in the first few chapters!) thanks to his memory and persistence.

He laid his sheaf of papers down beside Chu, thirty pages covered with line after line of hexadecimal code blocks: 02A1B59F, 9812D007, 70FFDEF6, like that.

“Read the code,” he told Chu. “See if you can memorize it. These pages are yours now.”

“Code,” said Chu, his eyes fastening on the symbols...

Chu was oddly unconcerned with the apocalypse. He was busy, busy, busy studying Ond’s pages of code. He’d become obsessed with the challenge of learning every single block of symbols...

“02A1B59F, 9812D007, 70FFDEF6,” said Chu when Nektar went to tuck him in that night. He had Ond’s sheaf of pages with a flashlight under his blanket.

“Give me that,” said Nektar, trying to take the pages away from him.

“Daddy!” screamed Chu, a word he’d never used before. “Stop her! I’m not done!”

So Chu is a genius that saves the world. He's also just a teenager: awkward, struggling with his emotions, falling in love, occasionally being a jerk, sometimes brave, always protective of his friends and family. This scene shows a teenaged Chu, on a mission with his father and another character in a parallel universe:

“Thuy misses her boyfriend,” said Chu in a bratty tone.

“I’m worried about him, okay?” said Thuy...what if he was dead? What if that...was to be Thuy and Jayjay’s last time together? “I’m capable of worrying about other people, Chu. You could learn from me.”

“It’s not my fault I’m autistic,” said Chu, making his voice very small.

“Don’t pick on him,” said Ond. “It’s not easy being Chu.”

“Sorry,” said Thuy. “I’m all keyed up.”

This is why I enjoyed his character so much. Chu is just a regular kid, who is autistic. It's that simple. The only other books I am aware of with interesting autistic characters are "The Speed of Dark" and "The Curious Incident of the Dog In the Night-Time."

As for the book overall, I LOVED it! I would highly recommend it to anyone. Rudy Rucker writes science fiction with really "out there" wild ideas. He will have your brain spinning by the end of chapter one. The ideas are complicated and yet very easy to read and understand. There is also nonstop action. Mr. Rucker has a great sense of humor and strong sense of empathy for all his characters. Start reading it right now! You will be hooked right away.

ETA: My post mentioned in Rudy's blog. And again in Rudy's blog.

Image: The book cover: it reads 'Rudy Rucker, Postsingular'. The cover is green and shows a purple cuttlefish (like an octopus) falling into a sort of mathematical black hole.

All About Adaptive Skiing, Part Two: How Do You Ski?

In Part One of All About Adaptive Skiing, I explained the who, what, and why of adaptive skiing, skiing technique, equipment, and instruction for people with physical or cognitive disabilities. In part two, I'll address the how. How do you ski?

I'll break it down starting with the basics.
Two-trackers: A typical ski setup is, as most people know, a pair of stiff plastic boots and two long skis. Two-trackers usually carry poles, but may not for various reasons. Poles aren't necessary at all, and in fact ski instructors often don't use poles. An adaptive skier might use this setup if they have only a cognitive disability, or a minor physical disability. Some people with single leg amputations use the typical setup, and for others it doesn't work at all.
Someone with a cognitive disability, for instance Down syndrome or autism, uses a typical skiing technique but benefits from adaptive skiing more than from typical ski school lessons. This is simply because adaptive skiing instructors have the knowledge to adapt their lessons to accommodate whatever learning challenges the skiers have.

Other two-trackers include hearing and visually impaired skiers. Deaf skiers sometimes wear a bright orange vest that says "Deaf Skier," or something similar, and visually impaired skiers almost always wear a vest that says "Blind Skier." Blind skiers ski with sighted guides who physically or verbally guide them as they ski. I once passed a line of ten blind skiers blazing down a run, led by one sighted skier. They were all singing "California Dreaming" to let the person above them know where to go with an audible cue.
You might hear the typical set-up called two-tracking, so named because each ski forms one track in the snow as you ski. Which brings us to

Three-trackers: A skier with a single leg amputation, or with use of only one leg, might be a "three-tracker," skiing on one ski only. Instead of poles, a three-tracker carries two outriggers, one in each hand. An outrigger looks like a crutch with a little tiny ski on the bottom. It can be used to glide like a ski, or the ski part can be pulled up and used as a brake. In this way, it's like the skier has three skis to help support balance and turning. I can three-track at an intermediate level, but it makes my skiing foot REALLY tired. I think three-tracking is a lot of fun!

Four-trackers: Four-trackers ski on two skis and ALSO carry two outriggers. Skiers with disabilities that affect their legs are sometimes four-trackers. For instance, someone with cerebral palsy who walks with canes or crutches might be a four-track skier. In the photo, a man with two prosthetic legs is four-tracking. Another variation is skiing with a cool walker that is mounted on skis. The skier holds the walker for support as they ski. A skier who might not be able to four-track may have more success in a

Mono-Ski: The mono-ski is really the Ferrari of adaptive skiing technology. It goes the fastest and is the most maneuverable. If you see a seated adaptive skier burning down the slopes at your local mountain, she is mostly likely a mono-skier. The typical mono-ski user has a disability that affects his lower limbs but has good trunk control, arm control, and reflexes, for example high or low paraplegia, cerebral palsy, or double leg amputation.
(Don't confuse this with another type of mono-ski, much beloved of Frenchmen in goofy snowsuits! That mono-ski looks like a great fat ski that you strap both your feet into.)
An adaptive mono-ski looks like a bucket seat and foot rest mounted on one long ski. It has a spring suspension to protect the skier from bumps. The bucket seat pushes the skier forward into a very dynamic position. A mono-skier holds short outriggers which she uses to balance and turn.
The mono-ski is difficult for some people to master, so let me introduce you to the

Bi-Ski: I have to confess that the bi-ski is my favorite of all the adaptive skiing disciplines. When I volunteer, I usually help out on a bi-ski lesson. The bi-ski has a bucket seat and foot rest, which are mounted on two specially-made skis. The magic of the bi-ski is this: as the bi-ski tips to one side, the skis actuate independently and cause the ski to carve, which makes the ski turn! In the photo you can see that the skier is leaning to the left, causing the two skis to tip up on their left edges. A bi-ski can be turned by the skier leaning to one side. A careful bi-skier can even turn the ski by inclining his head to one side or the other. The typical bi-skier has cerebral palsy, high-level paraplegia, or quadriplegia. Some bi-skiers hold outriggers to balance themselves. Other bi-skiers, who can't hold outriggers, might use fixed riggers. Fixed riggers are simply outriggers that are mounted to the sides of the bi-ski. They reduce the chance of the bi-ski tipping over and they help someone with limited mobility have more independence from the instructor on the slopes.

That sums it up for the most commonly used equipment and technique for adaptive skiing. If you have any questions feel free to leave a comment! There are a handful of other devices, like the adaptive snowboard, sit-ski, and dual-ski, which are either being phased out or are not used commonly. I might do a post on those in the future. Stay tuned for Part 3 and Part 4: A list of adaptive skiing programs and some reflections on becoming an adaptive skiing volunteer.

Images: 1. A cute little boy in ski racing gear and helmet is bent over on his skis with his poles tucked back for speed. 2. A man missing his right leg just above the knee skis on his left leg. He holds two poles with small skis on the ends. 3. A man with two prosthetic legs skis with two poles with small skis on the ends. His instructor skis behind watching him. 4. Side view of a man in heavy jacket and pants seated in a bucket seat mounted on a ski. He steadies himself with his handheld outriggers. 5. A woman in pink sits in a bi-ski smiling. She has tipped it way over to the side for an aggressive turn and she is reaching her outriggers out on the snow.

Exploring the Boundaries Between Man and Machine

From io9, a wicked sci-fi blog, comes a story about an art show called "Cyberdine" in NYC. The artists in the show are a sculptor who is a former prosthetist and a painter, who are "exploring the boundaries between man and machine." Looks very interesting. Zillions of us are walking around with various artificial parts, from screws to steel rods to joints to valves to limbs! Technology is only getting more advanced. Here's a look at it from an artist instead of a scientist.

Cyberdine at the Last Rites Gallery (Note: this site doesn't want to load on my computer. I am not certain but suspect that it may be NSFW.)

Image: A sculpture of a human skull/neck made of off-white plastic and metal mechanical parts. It looks like a robot skeleton perhaps.

Medically Fragile Kids Aging Out of Care

Today an article appears in the NY Times entitled "For the Disabled, Age 18 Brings Difficult Choices."

I thought the topic of the article was very interesting, and important to bring to light. The piece was about very medically fragile children with multiple health issues and/or disabilities who live in rehab/palliative/chronic care children's hospitals. At age 18, the kids 'age out' and have to move to a different facility. The issue raised in the article was that, with few exceptions, the only place for them to go is a nursing home. These teens feel isolated and out of place surrounded by elderly folks. The article also mentioned that this is a new problem because new medical technology has enabled these fragile kids to reach adulthood.

If you've ever visited a children's hospital that is set up for long-term residents, you know that it is a special place. One I visited near San Francisco had murals painted down every hallway and in every room. The one profiled in the article has a huge game room and a school-style cafeteria. It's set up to nurture kids medically, physically, socially, and emotionally.

The photographer for the piece did a wonderful job of capturing beautiful shots of these kids and young adults in and out of the hospital. The photographer also followed a featured young man with multiple disabilities around on a typical day, capturing him doing everyday things. The photos were not taken in a beautiful place, but I think that the images themselves radiate beauty. Good on ya, Nicole Bengiveno, New York Times photographer!

To me, the article really left something to be desired. It profiled a young man named Sam, who has a brain injury from a bout of meningitis. The piece says that he has

"...only limited use of his hands. He cannot communicate by speaking, but seems fully aware of his surroundings, smiling when happy and able to slap high five."

OK, he smiles and gives a high five. Great. But one of the photos shows him flashing the "ILY" (I love you), and the caption states that he uses sign language! What the heck, NY Times? Sign language is good enough for thousands of Americans, but not for you? I feel like they should have slightly more knowledgeable reporters. To me this seems like cultural ignorance and ignorance of disabilities and disability issues. I can picture the author's next piece: "Renowned physicist Stephen Hawking has only limited use of his hands. He cannot communicate by speaking, but seems fully aware of his surroundings, smiling when happy, and yet not at all able to slap high five." Sigh.

The other thing that rubbed me the wrong way was this: One photo showed a table full of teenagers with various disabilities sitting around a lunch table laughing at a shared joke and eating, but nowhere in the article do they ask a young adult their opinion about aging out of the children's hospital. HUNDREDS of kids in the program and none of them could be asked to give a quote? Instead the piece talks to the parents and doctors involved in their care.

A story about minority health issues that doesn't mention the opinions or quotes of that minority? Ridiculous, and yet here it is. I think the word I'm looking for is paternalism.

I give this story a C+, and I give the photos an A+.

Image: Cartoon line drawing of a boy in a wheelchair, grinning and pushing wildly so his hair flies out behind him.

ETA: badcripple has another interesting look at this article on his blog.