jason: jason (Default)

I was reading Ragga’s post Why Parents of Autistic Kids Get Judged and What to Do About It and I had some thoughts. I’ve not blogged in over 12 months, but I’m really getting into studying sensory integration disorders and Melanie and I are writing a book chapter on autistic semiotics.

In response to her post, I said the following:

I’m a verbal autistic adult, with out children. The general problem of parents’ expectations of having a normal child, and to further normalize a child’s behaviour is the issue. Parents of autistic children may resort to normalizing therapies, and often see the successes of those therapies as a victory. I’m sure that my parents find it something of a victory that I can pass as neurotypical at a glance, and have been able to hold down some employment. Obviously parents of children on the spectrum are more understanding of the child when they act inappropriately, but I wonder how many parents are comfortable not hoping for neurotypical behaviour. I would say that the expectations are ubiquitous, and need to be challenged or accepted. But I don’t find it shocking that an adult who is not aware of the difference the child has would look at the parent as being at fault.

I would like to wear a tshirt saying “I’m autistic… what’s your problem?” or “Fight Neurotypicality” though with a smile. I’m not angry, but I am NOT shocked at how parents normalize and have normalizing expectations. That’s what a parent is all about.

BTW, your kids look cute. I have pictures of myself with those same, to me, autistic questioning look.

to which she responded

Thank you Jason. Your points are very insightful. …perhaps as to be expected given that you have autism yourself and already been through what many autistic kids are going through right now. I am very thankful for your input as I believe that we parents of autistic kids should listen to autistic adults the most as you know exactly what you are talking about. Sure, every individual with autism is different and autism comes out in many different ways but… there are still some common denominators and you have the insight that others can never achieve – as much as we try.

I have never thought of the angle that you suggest; that we (parents of kids with ASD) are simply too expectant ourselves. Like you say, we do not have the same expectations towards our kids as maybe parents of neurotypical children but perhaps our expectations are still too high despite of that. I have to admit that I do indeed hope that my boys manage to learn the things that people are expected to learn, both through school and in society. …it’s just, you somehow always imagine that everyone want’s to be as normal as possible, including your children, or in other words (as normal sounds kind of negative in this context) that they would themselves want to fit in. Perhaps I’m wrong…?

To which I then said:

Normal is not only a socially constructed fiction that is most convenient for market driven cultures of the post industrial revolution era, but it is unnatural and in the end bad for the species.

I’m not normal. I have 4 degrees, a PhD, teach at a university and run a well funded research lab. I think lots of people would like to be non-normal like me. I also am a high school drop out who didn’t learn to write properly until his 30s, and never had a full time job until his 40s. Some people would not like to be that kind of non-normal.

“Overall the average American, age 25 or older, made roughly $32,000 per year, does not have a college degree, has been, is, or will be married as well as divorced at least once during his or her lifetime, lives in his or her own home in a suburban setting, and holds a white-collar office job”

Parents are deluding themselves if that is their ‘goal’ for their children.

The notion “I just want my kids to be normal” seems to me to be a hope that children won’t be singled out, bullied or marginalized by their peers. Wishful thinking if you look at the statistics relating to bullying and abuse.

Feminist thinking broke the mould in terms of what we thought was ‘normal’ in the workplace and the professions a century ago. The queer community has broken the mould in the civilized world for what is accepted as a meaningful relationship, etc. That means we don’t see the world from a black/white perspective that puts the white, protestant christian, university educated male as the model of what is good and normal. We see the world as a continuum, from left to right, male/female, the whole queer continuum from the hetro-normative male father of the family of the religious right to the same-sex two-spirited parents brining up children in a community context. And somewhere there is a trajectory/continuum for the autistic on an arc that intersects these continuum at some point.

I am NOT an expert on autism. I have read much of the literature and thought about it a lot over the past years, and incorporated it with my lived experience. I look at autism as from the social disability model, meaning that we are disabled by a society that is not inclusive to people who are different, and expects medical model normalcy. I have no time for normal (as described above) nor the economic model is supports.

I’m starting to work from the model that we have to engage children who are autistic in finding out the strategies to reduce their stress and discomfort, and frustrations with themselves and their environments. We’re trying to develop tools for sensory play to help autistics and people who are interested how and why to explore sensory information as a way to reduce stress in the autistic individual. In the end, autism IS a sensory integration disorder. I think that solving the problem with how we engage with and share sensory information will go a long way to finding our place on the continuum of human experience, which in the end is what we want for ourselves and others.

All the people I know on the spectrum are particularly sensitive to disruption, and when they lack the freedom and autonomy to deal with disruption in the way they prefer, overloads are inevitable. And I feel that dealing with the issue of sensory integration is beyond all other things both the direction to allow an individual to engage with others most fully and the key to happiness.

To which she replied:

Wow, you should write your own blog – seriously – I think a lot of people would like to read what you have to say. So many great points. Thank you.

I embarrassedly acknowledged that I have a blog, and this one goes back to 2001. I lost the earlier stuff. I should be obviously doing what she suggest, and blogging more. I think I’ll blog more on… autism.

Mirrored from Lemmingworks.

jason: jason (Default)

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.

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Mirrored from Lemmingworks.

jason: jason (Default)

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….

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Mirrored from Lemmingworks.

jason: jason (Default)



This is just a repost of Aleja doing a guest bit on Nick's Crusade blog. I always wish I could talk in such a measured clear voice... and actually say something clear and intelligible. But alas, I cannot. So Aleja can do it for us all.
jason: jason (Default)
Blogging Against Disablism Day, May 1st 2009

To be honest, I don't get it. Mostly because ablism and disablism are sort of the same things. Anyway, that's just me who gets borked by works. You can read more at Diary of a Goldfish: Blogging Against Disablism Day - 1st May 2006.

I have very little to do with the disability community aside from helping out with http://gimpgirl.com/ and the Adaptive Design Association, and visiting sites like Wrong Planet. Most of my education comes from Aleja, Jen and Nick, and to a large extent from my students. Early Childhood Education students that I've worked with have all done what they call 'special needs' placements, and some how are returning for graduate work have years of experience working with special needs children.

What I've noticed that strikes me is how few of the people I know who are well aware of disability actually have worked with someone in a position of power (teacher, boss, administrator) who lived with a disability. I know of only one, myself. And I have 2 colleagues at school who I personally interact with who have issues that would be considered disability issues.

I think we end up with a cultural attitude that people with disabilities must be serviced and cared for. Of course people with disabilities must be accommodated and buildings must be made more accessible. And when we're dealing with people who have cognitive challenges, appropriate supports to enable them to do the work in an equitable environment. I assume that if you remove systemic barriers to access, then whatever our challenges, we can do the jobs to the best of our abilities. That doesn't mean that I who is math impaired has a right to do math, and have to be accommodated. It means that if my job is to teach and do research, but I have a visual impairment that does not make it difficult to do my job, but makes it difficult for me to get to class or recognize students faces, then those barriers must be accommodated, to allow me to do the job I've been hired for. If I have mobility issues, and our transit system is unreliable, how can I get a job and show up on time if the system does not support me to move around town as easily as everyone else. Toronto's really bad, IMHO, in terms of accessible public transit.

We need more David Onley figures, but he's too distant. We need more people with disabilities living IN our communities, having families, taking their kids to school, being teachers, doctors, lawyers, and not just people at a distance. Strangely enough, there probably are a lot of people in that position, but because they can 'pass' for 'normal' and they know the stigmas that are attached to disability, they prefer to stay quiet.

Everyone knows that I've been assessed as high functioning autistic/Aspergers if you've been in my class, though I've only hinted at it in other places, but that's because I've been told by friends to not talk about it. Something to be ashamed of, or at least hidden. The problem with that is that the solution, or a solution, to dealing with dis/ablism issues is to not hide, but to be out there, intimate and interactive... as with other forms of discrimination, fear and ignorance are best countered with experience and engagement.

That's all I have to say about that.
jason: jason (Default)

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.

jason: jason (Default)

http://news.bbc.co.uk/2/hi/health/7966770.stm

Watching how a toddler responds to animations could help diagnose autism, research has suggested.
Babies usually start paying attention to movement soon after birth, and pick up information from the cues they see but children with autism often do not.
A study, published in Nature, where two-year-olds were shown manipulated animations found those with autism focussed on movement linked to sound.

jason: jason (Default)

Emotiv looks insanely amazing. Nick sent me the link. I really think he’d like one of these. It would allow you to drive a wheelchair with your mind, AND interface with a computer. Here’s a short video on the topic. I’ve signed up as a developer and hope I can get a couple of them.

If you can’t see the embedded video, check it out on youtube.

jason: jason (Default)

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.

jason: jason (Default)

I saw this video Dancing Chair on Frida Writes and thought of ken for dance, but also as an exercising medium to get people, who can, use their lower body and build up core muscle strength while freeing hands to hold and get things while moving around, say, one’s apartment. I can see lots of problems with it, right now, because I don’t think anyone could use it without a support person if things go awry, but the notion of hands free operation is very interesting.

jason: jason (Default)

Intense Support For Spurned Kindergartner, Fla. Boy Was Voted Out Of His Class; Reports: Teacher Reassigned, And Boy Has Autism - CBS News

It is very interesting that mainstream media is picking this up finally. CBS has pictures and an interview. Well I really don’t have enough actual information to have a clear opinion, for anyone to even consider ‘voting’ someone out of the classroom leaves me with a feeling beyond words. Anyway, the point is the interest in the story globally.

jason: jason (Default)

Slashdot | Amputee Sprinter Wins Olympic Appeal to Compete

“Oscar Pistorius, a 21-year-old South African double-amputee sprinter, has won his appeal filed with the Court of Arbitration for Sport. This overturns a ban imposed by the International Association of Athletics Federations, and allows Mr. Pistorius the chance to compete against other able-bodied athletes for a chance at a place on the South African team for the Beijing Olympics. He currently holds the 400-meter Paralympic world sprinting record, but must improve on his time by 1.01 seconds to meet the Olympic qualification standard. However, even if Pistorius fails to get the qualifying time, South African selectors could add Oscar to the Olympic 1,600-meter relay squad.”

Read the whole thing at The Associated Press: Amputee runner wins right to try for Olympic spot

The IAAF based its January decision on studies by German professor Gert-Peter Brueggemann, who said the J-shaped “Cheetah” blades were energy efficient.
Pistorius’ lawyers countered with independent tests conducted by a team led by MIT professor Hugh M. Herr that claimed to show he doesn’t gain any advantage over able-bodied runners.
CAS said the IAAF failed to prove that Pistorius’ running blades give him an advantage.
“The panel was not persuaded that there was sufficient evidence of any metabolic advantage in favor of a double-amputee using the Cheetah Flex-Foot,” CAS said. “Furthermore, the CAS panel has considered that the IAAF did not prove that the biomechanical effects of using this particular prosthetic device gives Oscar Pistorius an advantage over other athletes not using the device.”
Pistorius was born without fibulas — the long, thin outer bone between the knee and ankle — and was 11 months old when his legs were amputated below the knee.
Pistorius’ lawyer was thrilled by the verdict.
“He simply has the chance now to compete fairly and equally,” Jeffrey Kessler told The Associated Press. “We are particularly pleased that the decision is unanimous.”

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