30 May 2008

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.

29 May 2008

Getting back on the bike

At one point in my life, I was very athletic. At this moment in time, however, I am what Eric Cartman would call "Festively Plump." I decided I needed to do a good thing for myself and a good thing for an organization that I love to support as well. So I've signed up for the 14th Annual USARC Peak-to-Peak Pedal, a 335-mile bicycle ride from Big Bear to Mammoth in California.

I used to do road bike racing back in high school, and I do still have my old road bike and shoes, so that's one thing going for me. The idea of pulling on some spandex shorts and flailing away on the old bike is at once horrifying and very motivating. Horrifying because I am out of shape and...well...spandex! Motivating because I realized I wanted to sign up for this but I didn't know if I could do it. I decided since I was passionate about adaptive skiing, my enthusiasm could spill over into this ride. I started training last week. So far so good. My folks are mailing my old bike on Monday. My cyclist friend J has taken pity on me and agreed to take me on training rides.

My goal is to fundraise $1800 for USARC (The US Adaptive Recreation Center). USARC provides adaptive skiing, waterskiing, camping, and other outdoor sports for children and adults with physical and developmental disabilities. They are based in Big Bear, California. It's a wonderful program that changes lives. Their website states,
The USARC believes people are empowered when they undertake and succeed at challenging outdoor recreation. These experiences often result in increased self-confidence and greater success in academic, professional and personal life challenges.
In other words, opportunities to play in the outdoors, skiing and camping, are far more than just recreation. They represent a chance to build skills and self-esteem to help people achieve goals in every aspect of their lives.

Please visit my secure donation page-as a bonus you'll see a rather silly photo of me in ski helmet and goggles. Even if you can only donate a small amount, it still means a lot to the kids and adults who participate in USARC programs. Plus, all donations are tax deductible!

For those who live in or near Los Angeles County (or will be passing through any time this year), if you make a donation to USARC, I will bake you a delicious treat to say thanks! I am known far and wide for my baking prowess. If you donate to USARC:
$25, I will make you chocolate chip cookies, $50, I will make you cupcakes or scones (your choice of flavors), $100, I will make you a frosted double layer cake (your choice of flavors).

If you'd like to share this page with anyone who might be able to donate, click the little envelope icon at the bottom of the post or direct them to http://impossibleuniverse.blogspot.com/2008/05/getting-back-on-bike.html

Thanks for reading. If you want to know more about USARC or the Peak-to-Peak Pedal, please leave me a comment. If you have any training tips for this poor out-of-shape girl, those are also welcome!

Image: A little kid with a bowl haircut riding a red bicycle with training wheels. He is sticking out his tongue and he is wearing a red helmet. His bike has yellow wheels and a horn shaped like a duck.

27 May 2008

Odds and Ends, NY Times Redeems Itself

I missed lots of interesting stories over the weekend because I was in Las Vegas. My good friend JB was playing in a baseball tournament so we went to cheer him on and be tourists as well. I had a great time and at the baseball game I met one of the stars from one of my favorite tv shows, Grey's Anatomy. She was hilarious and awesome and she was nice enough to let me take a photo with her. Most actors are much less attractive in-person than on-screen, but she was even more beautiful in person!

First off, the NY Times has fairly dazzled me with an article about a US soldier with a severe brain injury. Many more soldiers in this war are surviving serious injuries because of better helmet and armor technology. This means there are more vets with disabilities than ever. The soldier profiled was in a Hum-vee that drove over an anti-tank mine. The brain "rattling" he received caused severe disability. He has very little independent movement and he cannot speak. He has what I have sometimes heard called "locked-in syndrome," someone of typical intelligence who cannot speak and communicates only with great difficulty.

I would highly recommend you read this entire article. The article talks about the soldier Shurvon, his injury, his progress in rehab, how he fits into his family, how his mother acts as his caregiver, and his options for communicating. Shurvon communicates only using his eyes. The author of the pieces writes a lot about how expressive Shurvon is with his eyes.

The article is also pretty amazing because the author exposes his own prejudices towards people with severe disabilities, and in doing so makes the reader confront their own beliefs. To me, it is brave to come out and admit that your preconceived notions were wrong and that you have changed them. Well done, Daniel Bergner! This seems like the type of story that can change the way people see people with disabilities:
I thought that there seemed little reason that Shurvon couldn’t someday earn a master’s degree. But at other moments the reasons appeared too immense ever to be overcome; the notion of college, let alone graduate school, seemed merely a soothing fantasy. And sometimes impossible to overcome, too, was the idea that Shurvon’s life might not be worth living; that I, in his place, would rather stop breathing, cease thinking, that I would prefer to die.

Whenever this idea took hold, I recalled a medical ethicist at R.I.C. telling me about studies showing that doctors and nurses tend to rate the quality of life of severely impaired patients to be far lower than the patients do themselves. The ethicist had spoken, then, about the ways that a life acquires meaning.

Next up, this month's "Paddler" magazine has an article about a kayaker who is a paraplegic. A kayaker buddy sent it to me. I'll give you a quote from the story. His raft guide is telling him that he will be able to handle an inflatable kayak on the river, despite his poor balance:

“Trust me,” he winked.

I asked him if he’d ever taught a paraplegic to whitewater kayak and he said he’d never had the opportunity. This was all I needed to hear.

I didn’t demo an inflatable kayak to ensure that I, a paraplegic, could safely paddle. I just bought one.

Weighing in on the Oscar Pistorius Olympics debate is bioethicist Art Caplan, and Paralympian/marathoner (and fellow Stanford alum!) Cheri Blauwet. They have different backgrounds and they both make very interesting points that you won't have heard already in the news. Cheri writes,

I feel that we are being extremely short-sighted to simply say "well...he doesn't have anyone to compete against." With the right resources and investment into grassroots development, we could have hundreds of talented athletes ready by the Paralympics in London 2012.

Medical tech blog medGadget reports on a new device to help people with severe visual impairment see better. The "Sightmate" helps users use the vision that they do have. It also makes you look awesome like Geordi La Forge.

Image: Levar Burton, playing the Star Trek character Geordi La Forge. A youngish handsome black man in a black and yellow uniform shirt with narrow wrap-around futuristic glasses.

22 May 2008

Awesome Accessibility at My Gym

I just joined a new gym, LA Fitness. Last night, I visited a new branch of it in a different part of town. I was very impressed with what they had done to make the place accessible to people with mobility impairments. To enter the gym, you have to go to the second floor of a shopping center. There is a really long and goofy-looking staircase to the entrance for this purpose. There is also an elevator in the front that goes straight to the front desk of the gym. Cool.

Once inside, weights are on the main floor, and cardio machines are upstairs. There is a staircase to the cardio machines, but no elevator. I wandered around up there, but all the bikes were occupied. I noticed downstairs, tucked into the hallway beside the squash courts, there were some cardio machines. There were two bikes, 3 stairclimbers, 4 treadmills, and 6 elliptical machines. I didn't know why they were there, but both bikes were free so I hopped on.

While I was working out, I glanced around and noticed the ramp connecting this area to the rest of the gym. Then I spotted that the treadmill next to me had the "blue guy in a wheelchair" sticker on it that said "This piece of equipment is reserved for people with disabilities" or something similar. I was quite impressed. A lot of places wouldn't consider creating disabled access to treadmills and bikes. But there are lots of people who might use a wheelchair AND want to use the cardio machines. Well thought out and well executed. Yay for you, LA Fitness.

As far as complete physical accessibility, I couldn't say for sure. The gym and the locker room are VERY spacious, and there are low lockers. I am not knowledgeable about wheelchair-accessible weight machines so I couldn't tell you.

In other news, I think this is hilarious.

Image: Line drawing of a person in a wheelchair triumphantly raising a carrot and a head of lettuce over their head. A dog sits next to him and the caption reads "Another satisfied customer."

"When can I get my cybernetic transformation underway?"

A biology researcher at the sci-fi blog io9 tells us all about cutting edge and future technology that will help people with disabilities. It's a nice overview with lots of good links. Check it out!
I was feeling left out of the cyborg revolution until I remembered that I became a cyborg child at the tender age of 3. My cyborg parts, although tiny, greatly reduced the frequency of chronic ear infections, ensuring that I could hear my teachers most of the time while I was in school, thus making me a more successful student! Alas, my artificial parts fell out sometime later, leaving scars on my tympanic membranes (eardrums!). As technology becomes more advanced and people live longer, more and more of us will be joining the mighty cybernetic army. What cyborg parts do you have?

Image: Luke Skywalker's artificial hand, with its access hatch open.

20 May 2008

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.

19 May 2008

Church Files Restraining Order Against 13-Year-Old Boy With Autism

I am feeling sickened by this article on ABC News, about a 13 year old boy named Adam Race. The article is well-written and provides a balanced view of the issue. Adam has autism. He is also a big lad-six feet tall and 220 pounds. His family of seven attends Catholic church services every Sunday. They sit in the last row or the "cry room" (I guess this is where you take your crying baby during services). They leave during the last song so that they don't have any contact with others. Despite all this, the head priest at their Bertha, Minnesota church has filed a restraining order against Adam which proclaims that he may not enter the church.

Let's look at the facts. The church claims: Adam spits, "struck a child", urinates in church (excluding someone due to an incontinence problem is outlandish, not to mention very hurtful), fights when he is restrained, his parents "tie him up and sit on him", and he "assaulted a girl by pulling her onto his lap and, during Easter mass, ran to the parking lot and got into two vehicles, starting them and revving the engine." In response, his parents claim that he doesn't spit. They stated that soft fabric restraints, the sound of a car's engine, and the weight of someone sitting on him help to calm Adam down. His "urinating in church" is a bladder control issue, similar to young children, the elderly, and some people with disabilities.

To me it sounds like Adam is a boy whose family want to worship together and are willing to adapt their routine to make it possible. Sitting with the rest of the parishioners isn't feasible because that is uncomfortable for Adam and disruptive to the service. Sitting in the back may not be the answer either.

It is 100% true that the church cannot condone an unsafe environment for its worshipers, especially children and the elderly. That being said, I think that people fear autism because they don't understand it. Do some autistic people use physical aggression? Yes. Do some not-autistic people use physical aggression? Yes! The fact of his size and the fact of his disability should not automatically equal a year-long legal ban from church. He has not in fact hurt anyone at his church.

In addition, there are hundreds of things the family and the church could try to create a safe and comfortable environment for all. For example: there is a room to take crying babies where people can continue to follow the service. Have another room ready for Adam and his parents when he cannot stay in the main area of worship. Maybe Adam could have a buddy, a big high school football player to volunteer to help supervise him. Maybe Adam's religious leaders could extend themselves to his family to help them get the resources they need to help Adam with his behavior. I could go on brainstorming all day! Rather than work with this boy and his family, the church (which this boy has attended ALL OF HIS LIFE) has taken legal measures to exclude him.

The ADA probably factors in here at some point, but even before that, shouldn't a religious leader be able to extend a little bit of COMMON HUMAN DECENCY to this boy? Shame on you, Reverend Daniel Walz.

The NCPD and CAPD are two groups that provide information relating to Catholicism and disability. There are many resources these priests could have gone to for guidance.
Darcee at Simply Catholic, parent of a child with autism, lists some resources for parents and religious leaders about embracing people with disabilities in religion. Here's her take on this story. Other religions have similar resources that are particular to their practices--google it!

What's your take on this story?

(Note: I am not a Catholic, but I am religious and I strongly believe that individuals with cognitive disabilities should have the freedom to participate in a religious community however they choose. My own house of worship offers all religious services for free online via live webcam, which is beneficial for people with illness or disability that limits their travel.)

Other Olympians with disabilities

I wrote in a previous post that Natalie du Toit, the South African swimmer, and Oscar Pistorius (if he qualifies), the South African sprinter, would be the first Olympians who have amputations to compete in the summer Olympics. I have to take it back, though, because I read about George Eyser, an American gymnast with a wooden leg who won 3 gold medals (plus 2 silver and 1 bronze!) at the 1904 olympics. His gold medals were in rope climbing, vault, and parallel bars. I would love to say more about him but I can't find any more information about his life. Could make an interesting research project!

Other notable Olympians with physical disabilities include:

Neroli Fairhall, a female New Zealander paraplegic who competed in archery in the 1984 Olympics. She was injured in a motorbike accident and subsequently competed from her wheelchair. A fantastic photo of her can be seen at the top of this post.

Paola Fantato, an Italian archer, followed in Fairhall's footsteps by competing from a wheelchair in the 1996 Olympics. Fantato had polio as an infant which left her with a permanent physical disability.

American runner Marla Runyan, who is legally blind (fun fact: I met Marla Runyan several years ago because we went to the same hairdresser. She is 100% muscle!) ran in 2000 and 2004.

Karoly Takacs was a Hungarian sharpshooter who lost his right hand in a grenade accident in 1938. He then switched to shooting with his left hand and won two gold medals in the "25 meter rapid fire pistol" event, 1948 and 1952. (I would include a picture, because he looks really intimidating, but I don't like guns so you can go look at his wikipedia page instead.)

Jim Abbot, the American Major League pitcher, was born missing his right hand. He won a gold medal at the 1988 Olympics on the US baseball team before starting his ten year professional pitching career.

Oliver Halassy, a Hungarian water polo player, won two Olympic golds and one silver medal (1932, 1936, 1928). He lost his left leg below the knee in a streetcar accident as a child.

Pyambuu Tuul is a blind marathon runner from Mongolia. After a corneal transplant restored partial sight in one eye, he ran in the 1992 Olympics.

Ildiko Ujlaki-Rejto, a Hungarian fencer who was born deaf. She won two gold medals in the "individual foil" event, in 1964 and 1968.

I wonder if anyone at the time these athletes competed was crying foul for the use of a wooden leg on the parallel bars or a wheelchair on the archery range.

16 May 2008

Paralympians in the News: Josh George, Natalie du Toit, and Oscar Pistorius

The NY Times has a new story up about a young American athlete going to his second Paralympic Games next year, Josh George. I enjoyed it. He talked about his frustration about not being taken seriously as an athlete due to his disability.

“You tell them, ‘I’m a wheelchair racer,’ and they’ll say, ‘Good for you!’ like, ‘Good for you, you’re getting out of the house and doing something,’ ” said George, who graduated with honors from the University of Illinois last year and still trains primarily in Champaign. “It’s not, ‘How’d you do at the last race?’ You don’t get taken as a serious athlete a lot of the time. People don’t quite understand exactly what goes into it.”

Then the article really does take a look at everything that goes into Josh's training. Starting with his childhood injury, then how he was drawn into sports, and finally his elite-level training. Plus there are some videos of his racing, for the techie/jock in you that wants all the nitpicky details of his racing chair and technique. A+ profile, NY Times!

AND from msnbc, the 'Court for Arbitration in Sport' decided that South African double-amputee sprinter Oscar Pistorius was eligible to qualify for the Beijing Olympics. Previously, another sport organization had ruled that Pistorius was NOT eligible to compete for a spot on the Olympic team because his prosthetics gave him too much advantage over other runners. Earlier tests indicated that the way his prosthetics worked made them superior to regular feet. New tests done by MIT biomechanics researcher Hugh Herr (a fellow double-amputee athlete!) found that the special Cheetah blade prosthetics were NOT superior to regular feet.

The issue of Pistorius' eligibility to compete as an Olympian rather than a Paralympian is a very sticky one. Both sides of the debate are compelling. And Pistorius himself is in a bit of Catch-22: if his prosthetics give him an advantage, he isn't eligible to race in the Olympics; if his prosthetics leave him at a disadvantage, he won't be competitive with other Olympic sprinters. At least now he will get his chance. I wanted to include this great quote from Pistorius himself from the article.

“When I found out, I cried. It is a battle that has been going on for far too long. It’s a great day for sport. I think this day is going to go down in history for the equality of disabled people.”

I would be remiss if I didn't include Natalie du Toit, the first amputee to compete in a summer Olympics! (ETA: I read that she was the first but then I did some more research, and there have been a handful of amputee athletes who have competed in the Olympics! New post to come on that topic. She will be the first amputee swimmer!) du Toit, another South African, just qualified for 10 km open water race (this event is new, which would explain why I've never heard of it). She will be competing in that event and then competing in numerous swim events in the Paralympics two weeks later.
Her story is very impressive. A competitive swimmer, she failed to qualify for the 2000 Olympics. In 2001, she lost her leg in a traffic accident. She continued to train but did not qualify for the 2004 Olympics. In the Spring of 2008, she finally qualified! du Toit does not use any prosthetic to race. And, she's only 24. I look forward to seeing what she can do in Beijing this summer!

Images: Top: Josh George finishing the 2004 Chicago Marathon. Dressed in blue with a blue helmet, he is bent over his racing wheelchair steering it over the finish line. Middle: A man in a track uniform and sunglasses has both feet off the ground as he sprints. His feet are black carbon-fiber J-shaped blades. Bottom: A very muscular woman in a black racing swim suit is poised on a starting block, ready to dive into the pool. She is standing on her right foot as she has a left above-knee amputation.

15 May 2008

Great News From the Sunshine State

California Supreme Court overturns gay marriage ban

A historic decision was made today in California's Supreme Court. If you consider yourself to be an advocate of disability rights but you don't follow gay rights issues, I would share two quotes with you. First from a man interviewed for this article, asked about what the decision means for him:

"I think this is the beginning of the end of ostracism, bullying, and all the things that used to make people feel less human than others."

Second, a famous quote from Lutheran Pastor Martin Niemoller:

"In Germany, they came first for the Communists, And I didn’t speak up because I wasn’t a Communist;

And then they came for the trade unionists, And I didn’t speak up because I wasn’t a trade unionist;

And then they came for the Jews, And I didn’t speak up because I wasn’t a Jew;

And then . . . they came for me . . . And by that time there was no one left to speak up."

Take a moment to think. Who will speak up for you? Who will you speak up for?

Image: Two men and two women smiling and holding a special version of California's flag--The top half is white with the California brown bear, and the bottom half is horizontal rainbow stripes.

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.

14 May 2008

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+.

mage: 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.

13 May 2008

Sumi, the Paralympic Mascot

I was looking at the adorable mascots for the Vancouver 2010 Olympics today. They are all really cute but the cutest one is Sumi! I am totally in love with this little creature! Love love love him! He is an "animal guardian spirit," according to the vancouver 2010 website. His top half is a thunderbird and his bottom half is a black bear. He "wears the hat of the orca whale," whatever that means. Much like me, his hobbies include alpine skiing and his favorite food is hot chocolate! Anyway, I was digging on his design when I found out that he is actually the PARALYMPIC mascot! Yay! I am stoked that the Paralympics merited the cutest mascot. Someone please sell me an adult size t-shirt of him! I feel like I really want to sew a Sumi costume for Halloween! I will leave you with a shot of the dancing mascot costume version.

Images: Top: A grinning little brown cartoon bear wearing a green tunic. He has bird's wings and wears a strange green hat with orange accents and three spikes across the top. Seated on a sled hockey sled, he is waving around two little sled hockey poles.
Bottom: A person wearing a mascot costume of the same character. He is standing on a stage, smiling, with his wings outstretched.

12 May 2008

All About Adaptive Skiing, Part One

I have been fortunate enough to volunteer at three different adaptive skiing programs. Similar programs exist at ski resorts all over the world. When I tell people about what we do as adaptive skiers and instructors, they are almost always very surprised. I thought I would share some info about adaptive skiing and my perspective on it.

Skiing is my thing. I didn't learn to ski until I was nearly 18 years old. Most expert skiers I meet started skiing before they started kindergarten. I definitely caught up now and would consider myself an expert skier.

Why skiing? Skiing is awesome! Communing with nature out in the snow and the cold is truly a magical experience. The silence of huge snowy trees will fill you with awe. And the skiing itself is incredible. It really does feel like flying. In my opinion, there is no sensation that can compare to gliding down a deep slope through waist-deep fresh powder snow.
I once skied all weekend with a first grade boy seated in a bi-ski. He had cerebral palsy and he could only say about 50 words. He spent the entire weekend on the slopes screaming "WOOOOO-HOOOOO!" with a huge grin on his face. He was so loud that people ahead of us were stopping to turn and smile at him as he went by. When we would stop at the bottom he would shout, "More! Fastah! Gooooo higha!" So I think the feeling is universal.
For me the feeling of freedom that flying down a snowy slope provides is very valuable. It has been my observation that for kids with mobility impairments (and often adults too), screaming down the hill as fast as their instructor will allow them is nothing short of a magical experience. Lots of kids get wrapped up in cotton and treated like a china doll, so the opportunity to fly (and to crash in the cold soft snow) is really special. Even if the family ski trip only happens once a year, for many kids that is the best day of the year.

What is adaptive skiing? Adaptive skiing is skiing, sometimes with specialized equipment, for people with disabilities who cannot ski using regular equipment or regular instruction techniques. Adaptive skiers ski using a regular technique, or ski on one leg, or while seated, or using a ski-mounted walker, to name a few adaptive technologies. Adaptive snowboarding is a new sport that is rapidly being developed as well.

Who can ski? Almost anyone can ski. I have seen a five-year-old girl lugging an oxygen tank skiing. I have seen a sixty-year-0ld man with severe spastic quad cerebral palsy skiing. Many children with autism and cognitive impairments enjoy specialized instruction to match their learning needs at adaptive ski schools. Some examples of disabilities adaptive skiers might have: cerebral palsy, spina bifida, paraplegia, quadriplegia, muscular dystrophy, amputation, autism, cognitive impairment, Down syndrome, behavioral disorder, epilepsy, tracheostomy, colostomy, g-tube, cerebral shunt, visual impairment, and hearing impairment. Adaptive skiers range in age from 5 to 75. Just about the only people who can't ski are those with fragile bones or who otherwise need to avoid falling (maybe osteogenesis imperfecta or osteoporosis, for example).

Coming soon:
Part Two: How do you ski? All about adaptive skiing equipment and techniques.
How do you teach/volunteer? The roles of the instructor/volunteer in adaptive skiing.
Where can you ski? I'm planning a comprehensive list of adaptive skiing programs in the US. Maybe later, the world!

Image: Paralympic gold medalist and all-around super-stud paraplegic athlete Chris Waddell tears it up on a mono-ski. Source.

First Post Ever!

Welcome! A little bit about me and why I started this blog:
I am very interested in aspects of disability culture, rights, and portrayal in popular culture. I also have an interest in biology, especially human biology. I would consider myself to be an ally to the disability community. While I was at university, I worked at a camp for people with developmental disabilities. In addition, this year marked my fourth season as a volunteer adaptive ski instructor, helping people with disabilities learn and enjoy downhill skiing.

Stay tuned for more posts!