jason | Entries tagged with special needs

My friend RB started a thread on GimpGirl community on Disability-Relevant Movies/Books/etc. It is unusual for a guy to be posting on GimpGirl, but I help them out with some stuff, so I get the postings. And I didn’t think it would be improper for me to comment. I thought I’d add it here as it may interest some folks.

Hey RB;

I’ll take that as a question you don’t mind me weighing in on.

I was a fan of Lois McMaster Bujold for a time. Her work isn’t without problems, but what makes it particularly interesting to me was that all of her novels that I read focused on disability, but done as SiFi space opera. She’s also one of the most famous SiFi authors.

Falling Free is about a group of youth who have been genetically modified to live in zero gravity… as soon as they start to reach the age where they can work building space stations and the like, artificial gravity is invented, and the world they were designed for ceases to exist. They have 4 arms and no legs, and cannot even sit in regular gravity. They are to be put into hospitals. They are also non-persons, being designated as post-utero biological tissue. With the help of their welding instructor they…

The 23 novels of her Vorkosigan largely focus on the manic depressive Miles Vorkosigan who has a form of Osteogenesis imperfecta, and is 4′9″ on a planet where everyone who is anyone is tall dark and handsome. He uses his whit and hilarity ensues.

One of the most interesting novels, to me, was Ethan of Athos. Ethan is the equivalent of a midwife on a planet that is all male (and 85% gay). The uterine replicators, which use donated ovaries, no longer work and he’s got to go out into the world of women to negotiate new donations if his planet survives. He meets Elli, a mercenary who who has the most beautiful face, but it is a prosthetic replacement, her own having been burned off in a plasma fire, and she had to spend a year blind and breathing/eating through tubes until able to get surgery, and is never able to reconcile her previous disability with her present appearance.

They’re space opera, so in once sense they’re always silly, and uplifting, and none of the characters really struggle with medical bills and the like… though there’s a fair bit of shooting and indentured servitude to balance that out. Strangely enough, disability is taken as a struggle, an issue of social discrimination, a personal psychological challenge, AND a mechanism for defining plot and character, without it ever taking centre stage. And Lois is not seen a writer of disability focused fiction and I’ve not seen anything written about her that does even take it up, though I’ve not looked that hard.

These novels may or may not interest women. They predominately centre around male characters. However the female characters are clearly, and explicitly, acknowledged as the strongest and most capable, though often at a disadvantage due to cultural restrictions on women. Miles’ apparently nefarious activities gives them a level of autonomy unavailable else where.

One of the strangest characters is 9/Taura in Labyrinth: “Miles breaks into Ryoval’s laboratory, but is caught and imprisoned in a utility sublevel where they are also keeping Canaba’s dangerous specimen, “Nine”. This turns out to be an eight-foot-tall werewolf complete with fangs, claws, superhuman strength and speed, and a ravenous appetite. Miles is shocked to find that the creature is female, and, despite her fearsome appearance, she is an intelligent and emotionally vulnerable young woman” who joins the mercenary fleet on their escape.

http://en.wikipedia.org/wiki/Lois_McMaster_Bujold
http://en.wikipedia.org/wiki/Ethan_of_Athos

THe mountains of mourning can be downloaded from from http://en.wikipedia.org/wiki/Baen_Free_Library which focuses on infanticide and genetic abnormalities.

Mirrored from Lemmingworks.

If this video does anything, it makes the autistic child look like a lost victim of a plague that wasn’t caught in time, the parents failures for not ‘catching it in time’ and the autistic community a group of pariahs. It uses scare tactics and I feel veiled threats that feel to me more like a marketing campaign than a personal expression of the creators (the spin that I’ve read AS has put on this). Sure. Express yourself… your anger and pain as a parent… but don’t post it on “Autism Speaks” because if you’re not on the autistic spectrum, you aren’t speaking as part of the broad diversity of autistics… you’re speaking as a parent of autistic children (according to AS), and your voice shouting loud, full of fear and negativity, merely silences us, victimizes us in the eyes of society, marginalizes our potential contribution to society, and creates a culture that can seek to further exclude us for our difference. Watch the video… do you want the child, as portrayed, playing with your children? That child is portrayed as tainted.

Autism Speaks presents us as puzzles and broken children… not the puzzle solving remarkable individuals history suggests we are.

Groups Outraged Over Video Released By Autism Speaks

A group of leading disability organizations is calling on Autism Speaks’ benefactors to end their support for the organization. The move comes in response to a video distributed by Autism Speaks which critics say depicts people with autism as less than human and burdens on society.

The video, which aired at Autism Speaks’ World Focus on Autism event earlier this week in New York, features two parts.

The first part shows young people with autism as a voice-over declares, “I am autism.” The man’s voice continues by describing autism as a disorder that works “faster than pediatric AIDS, cancer and diabetes combined,” will ensure that your marriage fails, will bankrupt you, cause you not to sleep and make it “virtually impossible” to go out in public without experiencing embarrassment or pain.

The second portion of the video features more hopeful images. The voice-overs declare that through love for their children, parents and others will work tirelessly to overcome the challenges autism presents.

In response, disability advocates are now coming together to condemn the video, which they say is part of a pattern of behavior by the nation’s largest autism advocacy organization.

In a letter being prepared for open circulation next week, the group of advocates say the video is a “fundraising tool” that relies on “fear, stigma, misinformation and prejudice against autistic people.” The letter will be sent to Autism Speaks donors, sponsors and supporters and it will be posted publicly, organizers say.

Already the American Association of People with Disabilities, ADAPT and TASH are among the organizations that have signed on to the letter organized by the Autistic Self-Advocacy Network. Other organizations are now reviewing the document….

The group of advocates go on to ask the public to no longer support Autism Speaks and instead find new ways to support people with autism and other disabilities.

“Autism Speaks believes that its bottom line will be helped by portraying autistic people as less than human,” says Ari Ne’eman, president of the Autistic Self-Advocacy Network. “This is really damaging if you’re trying to get your child included in school or if you’re an autistic person trying to find a job or get included in society more broadly.”

When asked about the video, Autism Speaks representatives tried to distance the organization from the short film, which appears on the group’s Web site and includes home videos solicited through the organization….

Mirrored from Lemmingworks.

Please Stand By has a great picture of my friend nick, finally home with Aleja after 378 days in hospital. I’m sure the last think they want to bother with is being inspirational, but they both are inspirational to me. Not for any magical hollywood reason but for a myriad of very practical and human traits they both carry in abundance. And the great colour coordination

Mirrored from Lemmingworks.

Medical Journal blames disabled people “who want to live”

An editorial appearing in the prestigious British Medical Journal (BMJ) has blamed disabled people “who want to live” for the difficulties surrounding the debate in the UK on assisted suicide. Tony Delamothe, deputy editor of the BMJ, bluntly admitted that he is in favour of assisted suicide, reports Hilary White, LifeSiteNews.com.

“The debate on assisted dying has been hijacked by disabled people who want to live. It needs to be reclaimed for terminally ill people who want to die,” he wrote.

Personally I do agree with people’s right… to live or to die, but right I think that the debate should be “hijacked by disabled people who want to live” even though I want the right to die. If my wanting to die causes other people to be forced into situations where they might die or be pressured into suicide, I’m morally and ethically complicit in their death, whether i know about their particular situation or not. And that goes for anyone who would assist my suicide.

If right to die people can’t come up with an iron-clad solution that protects the rights of vulnerable individuals, then their cause is unethical. And to deny that vulnerable individuals will be pressured into choosing suicide is to deny their vulnerable individual status, their alienation and marginalization in the first place. Untenable. Just a thought.

Mirrored from Lemmingworks.

Spanking Kids in School Still Common, Especially Among Disabled | The Autism News

a new study by the ACLU and Human Rights Watch, as reported here and here. More than 200,000 U.S. schoolchildren were subjected to corporal punishment during the 2006-2007 school year, the study shows. And the South has a big lead in whacking schoolkids, with Texas, Mississippi and Alabama holding the top three spots.Paddlings in school are still legal in 20 states, and the report suggests they are quite common, based on 202 interviews with parents, teachers, students and school officials, plus federal Education Department data. The courts haven’t afforded students in classrooms the same protection as criminals have against cruel and unusual punishment.Many pediatricians now advise against corporal punishment; some research suggests spanking makes behavior problems worse. And while I admit to having harbored now and then a fleeting wish that my kids’ teachers could smack fellow students whose behavior disrupted class, I never would seriously advocate such a thing.In the saddest finding of the ACLU study, children with disabilities, especially autism, drew corporal punishment at a far higher rate than others, the study found. Children with autism were often punished for behaviors linked to the condition, because teachers lacked the knowledge, training or patience to use other methods of behavior control.

Mirrored from Lemmingworks.

Judge Sentences Alabama Woman To Death For Murder Of Autistic Son – WHNT

Judge Dempsey also wrote in his sentencing order, “To intentionally murder your child by burning him is shockingly evil.”

During the trial, the state presented evidence that Mason, who was autistic, had a total of $175,000 worth of life insurance when he died. Christie Scott took out a $100,000 policy the day before her son died. Someone had also removed expensive jewelry and pictures from the home. Investigators also found an undamaged smoke detector in the ashes. It was believed to have been taken down before the fire.

Defense attorney Robert Tuten argued the fire was accidental and there was no proof Scott set the fire. Franklin County District Attorney Joey Rushing contended Scott set the fire to collect her son’s life insurance money and to relieve herself of the burden of caring for an autistic child. Rushing pushed for the death penalty.

“To me, the fact that she chose that manner of death for a child that was scared of fire puts her in a category that not only is possible for death, it definitely deserves the death penalty,” says Rushing….

In their verdict, jurors found Scott guilty of three counts of capital murder:
Capital murder for pecuniary/monetary gain
Capital murder committed during first-degree arson
Capital murder of a person younger than 14 years of age

I just don’t know what to say. Here it is autism related, but other times you hear about it being about family honour. I don’t support the death penalty myself, and I can’t say that I support it here. Selfish criminal homicidal stupidity that allows you to not see someone as human and worthy of life… that’s what strikes me. And the ability of people to see people who are different as non-human is what astounds me, and it is something that I think is both learned and repairable over time. Not with her… but societally. That’s what is motivating me about notions of inclusive education.

Mirrored from Lemmingworks.

Have to go to the site for the picture, but the point is clear: even 500,000 years ago parents and communities took care of children with disabilities. Not shocking, unless you think of social support for people with disabilities now. I bet we’ve gone down hill since then in terms of equity and inclusion.

Not Exactly Rocket Science : Deformed skull of prehistoric child suggests that early humans cared for disabled children

For all appearances, this looks like the skull of any human child. But there are two very special things about it. The first is that its owner was clearly deformed; its asymmetrical skull is a sign of a medical condition called craniosynostosis that’s associated with mental retardation. The second is that the skull is about half a million years old. It belonged to a child who lived in the Middle Pleistocene period.

The skull was uncovered in Atapuerca, Spain by Ana Gracia, who has named it Cranium 14. It’s a small specimen but it contains enough evidence to suggest that the deformity was present from birth and that the child was about 5-8 years old. The remains of 28 other humans have been recovered from the same site and none of them had any signs of deformity.

These facts strongly suggest that prehistoric humans cared for children with physical and mental deformities that would almost have certainly prevented them from caring for themselves. Without such assistance, it’s unlikely that the child would have survived that long.

Before moving on, a point of clarification: when I say “human” in this piece, I mean the genus Homo, which the child certainly belonged to, rather than the species Homo sapiens, which it certainly did not (its skull is too old).

Garcia found Cranium 14 in many different pieces over two years, but the fragments were preserved so well that she could reconstruct the skull very accurately. On doing so, she found it clearly belonged to an immature child. Its brain volume was within the adult range, but certain connections between the different bones of its skulls hadn’t fully matured. Based on that, Garcia guesses that the child was about 5-8 years old when he or she died.

My friend Katheryn at RyHigh has an interesting blog post, Hands up, where she talks about Disabled kids show host draws criticism, praise - CNN.com. Here’s a snippet from the CNN post

A children’s show host who was born with one hand is facing criticism from parents over her disability. The BBC is receiving complaints about kids’ show host Cerrie Burnell, who was born with one hand. BBC spokeswoman Katya Mira said the corporation has received at least 25 “official” complaints recently about Cerrie Burnell, new host of two shows on the BBC-run CBeebies television network, which is aimed at children younger than 6. The official complaints do not count the dozens of negative comments lodged in Internet chat rooms, Mira said. In one chat room, a father lamented that Burnell being on the show forced him to have conversations with his child about disabilities.

Kathryn goes on to say:

What I am sure is typical of the latter perspective, a comment on the CNN article said “It’s very hard, as a parent, to have every social issue jammed down the throat of your kids before they even hit first grade. Kids need a certain level of emotion maturity and understanding to be able to MAKE SENSE of the things they see. Otherwise they can’t categorize it properly in their minds.”
I know exactly what they mean. It was so difficult to explain to my young daughter why some people did not use sign language like we did.

Really, jamming a social issue down their throats? As a parent, here is how I see the conversation going.

“MommyDaddy, why does that lady have no hand?”
“Most people have hands but some have one hand and others have no hands.”
“Why?”
“That’s just the way it is.”
“Oh.”

The most interesting comment she makes is:

Sometimes kids will mimic the difference. Maybe they’d tuck their hand up their sleeve to experiment with having one hand. Most of the time, they’ll be satisfied with their little experiment and move on. As a two-handed person, I don’t speak for those with one hand, but I feel confident as a person with a disability to say that no one thinks your kid is a creep or you’re a bad parent for letting your kid do this. At that point, the child isn’t mocking; they are rehearsing in order to understand and empathize. After an ugly parental scolding “stop doing that. Don’t make fun of the handicapped,” or worse, “stop doing that. Do you want people to think you’re handicapped?” they start internalizing the value that it isn’t just different, it’s bad. And then, someday, when they’re looking to insult a classmate on the playground, they won’t call them one of the other ugly slurs based on race, nationality, gender, orientation, religion, or athletic ability, they’ll call them retard, or spaz, or gimp, or dummy.

I wish more parents thought this way.

Been chatting with Steve recently, or sharing emails anyway. He’s got this great hydraulophone concept. I’d love to have one at school. I would.

Don Norman’s cool. I would like to see government support for bringing novel and useful designs to market, though. To often you only see cool things, but no one can afford them.

Designers challenged to include disabled - CNN.com

The future of design could see the divide between able-bodied and disabled people vanish.
Don Norman , design Professor at Northwestern University in Illinois, and the author of The Design of Future Things, is issuing a challenge to designers and engineers across the world: Create things that work for everyone.
“It is about time we designed things that can be used by ALL people — which is the notion behind accessible design. Designing for people with disabilities almost always leads to products that work better for everyone.”
Once the champion of human-centered design — where wants and needs of individuals are the primary consideration in the design process, Norman now believes accessible activity-centered design is a better approach.
This approach creates designs by looking at the job a person needs to achieve in using a particular technology.
Norman told CNN that including disabled people in this thought process would create better technologies for all people, regardless of their level of ability.
“Make cans and bottles that a one-handed person can open and guess what, many people will find it makes their lives easier when they only have one free hand.
“Showers and baths can be made better and safer for all. Make things better for the hard of hearing or seeing and guess what, similar benefits for all,” he said..

Originally published at Lemmingworks. You can comment here or there.

As you well know, around April 9th, Larry and I started working on the superaleja needs a laptop to do second life project, to help our online buddy Alejandra Ospina (AKA SuperAleja get a laptop so that she could join us in using Second Life and share with us her experiences in using virtual reality as someone who has always lived with mobility issues.

So many people have helped bring this forward. Since April we have raised over $2400 CDN ($2275 USD) to get Aleja outfitted. Please visit our donations page to see everyone who has helped. Special thanks goes out to Nolan Transportation Agencies for their significant support of our project.

Early on, Mark Dubin of 3DEmbodiment got involved, and has provided some lindens as well as land and building materials to help Aleja explore.

The project, however, has grown from helping out a friend to realizing that this is really the start of an educational research and development project AND we hope it will be the start of a fundraising project. We hope to study how SL can be efficacious for individuals with mobility issues, how to develope new tools to support the use of SL, and raise funds to support individuals who need better computing to access second life… but more on that later… check out Alejandra’s A SECOND LIFE page, and the pictures below.

Thanks for all your help!

Aleja with an Apple Wiz

The Macbook Pro coming out of the box.

Alejandra with Andrew Emig who took care of the financial issues down in NYC, and, along with Laura (below) donated the laptop case.

Alejandra with Laura Schutter, who came along to take pictures…

Alejandra on her way, laptop where it should be, with what looks like a bemused grin.

Aleja putting her body on

Aleja with Threedee Shepherd (Mark) at the 3DEmbodiment island.

After student watched the famous Catsy video on hacking, this comes up: Article - News - Ex-judge Kline gets prison:
“Kline admitted he stored more than 100 sexually explicit photos of under-age boys on his computer and on several disks found at his Irvine home in November 2001. Police caught onto Kline after a Canadian computer whiz hacked into the judge’s Irvine home computer and discovered sexually explicit images of young boys and a diary that revealed Kline’s fantasies involving young boys. A subsequent search of his court computer revealed more images and more Web sites.”

[via Slashdot | Ex-judge Gets 27 Months on Evidence From Hacked PC]

Though I’m pleased with the result, I find it a problem that you can break into someone’s space, and then use what you find in your crime to convict you.

Mind Hacks: Virtual reality to treat combat trauma: “…virtual reality is being used to treat soldiers who have suffered post-traumatic stress disorder (PTSD) after combat.

Symptoms of PTSD include intrusive memories, pathological avoidance of things related or loosely-related to the trauma, and persistent arousal.”

I wonder if this would be useful, someday, for treating children with perceptual challenges.

I found Jersey scientists find a possible key to autism on Slashdot, and I find it really interesting just because I have a personal interest in metabolizing fatty acids as it relates to personal health issues.

Slashdot | One Laptop Per Child Security Spec Released

“The One Laptop Per Child project has released information about its advanced security platform called Bitfrost. Could children with a $100 laptop end up with a better security infrastructure than executives using $5000 laptops powered by Vista? ‘What’s deeply troubling — almost unbelievable — about [Unix style permissions] is that they’ve remained virtually the only real control mechanism that a user has over her personal documents today…In 1971, this might have been acceptable…We have set out to create a system that is both drastically more secure and provides drastically more usable security than any mainstream system currently on the market.’”

I teach about children and technology, so my statement is not strange, but I’ve always believed that young learners (if they’re going to use digital technology at all, which is a different issue) should have the best. In the old days, you’d see a child with a 256 colour display trying to do something using cassette tapes to load programs while we whizzed away with the best stuff. It seemed strange to provde the developing mind with the most limited set of tools when a business exec who never did much with it anyway and the brightest and shiniest. Of course the child is seen as less valuable. My attitude is, and was before I started teaching about childrean and tech., that you give the best [insert variable] to the children to get the best children, and that the best children lead to the best adults. But we give the worst to children. (I’ve used best and worst for their vague sense of value without specifics to keep with the notion of the article). I don’t know if the OLPC project is the best thing for children, though I’ve been following the topic for longer than this specific project’s been around, but they might as well have the best possible security, since the world does such a poor job of keeping them safe in most other categories.

“A documentary about Daniel Tammet, a British autistic savant gifted with a facility for mathematics problems, sequence memory, and language learning.”

This is an amazing 47 minute video of a wonderful mind.

YouTube - In My Language (use this link if you don’t get the embedded)

A bit of simple and insightful brilliance. JuliaD sent this to me, thinking of the (c)cld419ers. But anyone who has felt misunderstood, or is curious about what in the world they can no longer sense, or [insert variable] should watch it.

Mind Hacks: Autism, In My Language. In (c)cld419 we’re exploring technology and learning, and this year I keep tripping over interesting videos relating to special needs individuals. Here’s another one or two. Using video to share stories may seem trite, but when it is a window to a world we know little about, it is transformative.

Ex-Lemmingworks. ##.

Found this link on myomancy , one of my fav blogs: The Woman Who Thinks Like A Cow (Horizon 2006) - Google Video:
“Dr Temple Grandin has a legendary ability to read the animal mind and understand animal behaviour when no one else can. But this is no feat … all » of telepathy; her explanation is simple. She’s convinced she experiences the world much as an animal does and that it’s all down to her autistic brain.” I’ve read some about Dr Grandin, and I need to know more.