Monday, 31 March 2014

Light it up blah

April is nearly upon us, and I'm finding it very hard to get excited about lighting things up blue for autism.

It's blue light, but not as we know it
In the first instance, there's no logical link between the autism spectrum and the colour blue.  Pink might be working well for breast cancer, but there are more causes than colours so if every campaign needs a colour scheme we're quickly going to end up double-booked.  Check out the list of causes using variations on the blue awareness ribbon.  It's long, covering issues from child safety and bullying to freedom of speech online.

I took to Twitter and Facebook to ask what cause was associated with the colour blue.  The answers included prostate cancer, ovarian cancer, and the national depression initiative BeyondBlue.  Autism was mentioned twice, but so was the police.  Other answers were aliens, Blue's Clues, and this response, which I think sums up the problem with trying to reduce complex issues to a logo or an awareness ribbon:

"So many ribbons, don't even notice them anymore... Could be Easter Bunny! Sorry, not a laughing matter I know, but everybody's wearing some colour."

This makes things tricky from a communications point of view.  First you have to explain to Mr Random Punter that the blue light is for autism, not depressed police officers with prostate cancer, and then you still have to deliver some meaningful autism awareness.

We need some community education about the fact that it's not a condition exclusive to childhood, and the need for more services and support for people on the spectrum of all ages and particularly in regional and rural areas.  We also need to encourage respect, dignity and inclusion for people on the spectrum.  Maybe we could have posters or an app that show you a 10X10 grid of a diverse mix of faces, and people have to pick the autistic one.  And when they pick the little blonde-haired kid or the geeky looking teenage boy, surprise bitch - it turns out they're ALL autistic.

At the moment, the site behind Light It Up Blue in Australia acknowledges it's a lifelong condition, but then in the same paragraph they say it "affects every aspect of a child’s life and the family around them."  They then go on to say "more children are diagnosed with autism than childhood AIDS, diabetes and cancer combined", as if those conditions are comparable, and as if adults aren't being diagnosed in our 20s, 30s, 40s and beyond.  Autism Awareness (the group behind Light It Up Blue in Australia) has a post school options page on their website, which lists absolutely no resources at all.  On their support page, 14 of the 16 options are specifically for parents and carers, with only Lifeline and Carelink potentially being helpful for individuals on the spectrum.

The other issue is that the association between blue and autism is not a home-grown initiative.  Like Oreos, it's an American import.  And like Oreos turned out to be just smaller, strangely gritty versions of our own Delta Cream, imported autism awareness campaigns may not be all they're cracked up to be either.

There's a US charity/lobby group called Autism Speaks.  To say they're divisive would be to put it gently.  I have never seen a charity that's disliked so violently by the very people it ostensibly represents.  Many people on the spectrum object to their portrayal of autism as a tragedy, and of autistic people as burdens who are but shells of people, who cause suffering to our families and ruin the lives of everyone around us.  There's no social model thinking going on here, no realisation that by painting autism as the enemy you're creating an impossible situation for children and adults for whom autism is a part of our brains and our bodies.  Diary of a Mom recounts the story of a young man who, told by a therapist that autism was "the bad guy" in his life, put a gun to his head - to kill the "bad guy".

It's an issue various disability lobby groups and charities are going to face (if they're not already) as awareness of the social model of disability grows and more disabled people advocate for themselves.  You can't campaign for respect and dignity, and say "we love and support you", and then say in the next breath "but we think your existence is a tragedy and you're a drain on resources and the world would be a better place without people like you in it."  There's some cognitive dissonance to be worked through there.

There's more to Autism Speaks, which I don't feel well enough versed in to discuss.  Click here for a beginner's guide to the issues, and a some links for more information.  Here is more, from the Autistic Self Advocacy Network.  Here is some more, this time from the parent of a child on the spectrum.  Here's more, from another parent.  Here's another.  Here are some other shenanigans.

From my point of view as an interested outsider I've often noticed a palpable division within the US autism community, those who support Autism Speaks versus those who don't.  Since we're all ultimately on the same team you have to wonder how that happened, and how much energy and emotion is spent on that antagonism which could be spent creating a better life for all people on the spectrum.

And you have to ask yourself whether that school of thought, with all the division that's come with it, is something we want to encourage here.

I don't think it is.  Call me an optimist, but I think we can do better.

But I worry that by adopting the American hyperbole about autism - "public health crisis!" - and the image of autism as something that affects broken, wretched children and their suffering families, we're going down the same route.  I'm concerned that's a very dangerous road.

And that's why I'm not excited about lighting things up blue.

Saturday, 29 March 2014

Ambient sounds and beneficial noise

Sound can be the bane of my existence.  All sorts of noises press my sensory processing buttons, from radios not properly tuned to the station to motorcycle exhausts.  Two different conversations happening at once - say, someone trying to talk to me while that damn radio is chattering away - seems to shut down the understanding-spoken-language part of my brain altogether.

But I do like a bit of background noise, especially when I'm writing.  Something unobtrusive yet comfortingly present, repetitive without being monotonous.  Without words, so it doesn't muddle the words I'm trying to put together myself. 

You're not here. But you can sound like you're here
So, I'm pretty stoked to have discovered Nature Sounds For Me.  It's an online tool (also available as an app, for those with touchy-swipey devices) that lets you mix your own ambient soundtrack.  You get four channels to play with, and can fill them with a mix of natural sounds: rain, thunder, fire crackling, owls hooting, crickets chirping and so on, in whatever combination you choose.  You can adjust the volume of each track - you might want loud rain or howling wind, but just the faintest owl hoot in the distance.  You can also vary the frequency of the different noises, so the owl can hoot constantly, or just every now and again.

You can also mix in man made sounds if you want, from wind chimes to firecrackers to voices and music, but I kept away from those.  My favourite mix so far is a combination of rain and thunder, occasional owls, and a background rumble of brown noise - digitally generated noise that, to me, sounds like a distant waterfall.

While this site's probably my favourite, I got quite carried away researching and testing alternatives - Aspie perseverance, yo - that I now have a whole list resources.  Some are ambient noise generators like Nature Sounds, some generate white or pink or brown noise, and some create binaural tones, which some people say are amazing but others say make them feel ill.  (They don't seem to have much effect on me either way, really.)  Some are designed to help with concentration and alertness, others with relaxation, and some are just for fun.

So, here's the deal: I've just set up a mailing list for Letters from Aspergia.  Once a month an email will come out with links to the latest and greatest from this blog, plus other interesting neurodiversity stuff from around the web.  And when you sign up, you'll get an email with links to various resources for online ambient sound and other beneficial noise, so you can try them out for yourself.

Here's the form to get started:

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Thursday, 27 March 2014

Meet Elle and Kobash: an autism service dog team

Elle's known for years that she feels better around animals. Now, the Gold Coast Aspie and creator of Planet Aspergia has her own service dog: Kobash, a Blue Heeler-Kelpie cross.

Dream team: Elle, Kobash, and coffee
"If I went anywhere, and there was a dog or a cat, I'd spend all my time with them because I didn't have to force myself to be anything other than what I was," Elle remembers. "Having them around made it easier to be in social situations."

When Elle found out service dogs could be trained to work with autistic people, she set to finding out more with classic Aspie enthusiasm. But despite her excitement, her hopes dropped when she learned the potential costs associated with getting a service dog.

Enter A.W.A.R.E Dogs Australia: a Queensland-based charity that provides service dogs trained to help with individuals' needs. You can even BYO: if the the person's already bonded with a dog, and it's assessed and found suitable, they can help with the training and assessment to have it certified as a service animal. This was the route Elle decided to take.

"For about two years I searched for the best dog for me," Elle says. "I already had a greyhound, but she was unsuitable; too soft, and scared of so many things it would be a shorter list to write what she wasn't scared of!"

After an unsuccessful trial with a Golden Retriever-Border Collie cross, Elle started looking among the working breeds she'd always loved.

Kobash: from rescue dog to service dog
"The best dog I ever had was a Kelpie-cross-Bully. She and I were bonded so tight, she was almost an extension of me. Working breeds are bred to work with humans. And with their high intelligence, they can be trained to practically anything."

Elle was used to female dogs, and hadn't wanted a male. Then she fell in love with a picture of an alert blue dog with big bat ears, that was being fostered by Australian Working Dog Rescue. He was in Cairns — quite a hike from the Gold Coast — but Elle raised the money to have him sent down, on the understanding that if things didn't work out between them he could be re-homed with a local foster carer. With hope in her heart, she set off to meet her potential service dog at the airport.

"Somebody had thought to feed him before his flight, and he had, well...

"My first vision of him was of the most laid back dog, standing in his crate, covered in poo. We took him out and hosed him off, and off we went.

"During the time he was on trial with me, I exposed to him anything and everything I could to test him out. By the time the trial was over, I knew he was going to stay."

The dog dubbed Buster by his foster carers needed a new name. Elle decided on Kobash — a tribute to the blue dog's cobalt and ash colour scheme.

The next step was the paperwork, including a statement from Elle's GP to officially endorse her need for a service dog. Then it was time to have Kobash assessed, to check his suitability for the job. Kobash negotiated his way through city traffic, crowds, lifts, and a bustling conference centre, his attention staying focussed on Elle even when presented with distractions like other dogs. After aquitting himself well in the assessment, it was time to start his training.

Kobash stands behind Elle while working
Training involved obedience work, as well as learning specific tasks to help make Elle's life easier.

"I have trained Kobash to stand in line behind me, as I cannot handle anyone standing right behind me. He also stands behind me when I'm at the ATM.

"If I'm in the shops and overwhelmed sensorily, I go and sit down somewhere and he climbs into my lap, and having his pressure on me helps center me and calm me down.

"Having him around has made it easier to be with lots of other people too. I have taken him to conventions (something I go to every year) and because of his help I made it through whole days with out having to go out to the car to crash from overloading.

"Slowly but surely, people are figuring out that you don't have to be blind to have a service dog. People with heart disease, coeliac disease, epilepsy, PTSD, and autism all use service dogs."

Earlier in March, Kobash passed his public access test.

Service dog on duty

As a service dog, Kobash is entitled to go anywhere Elle does, except sterile zones and food preparation areas. That included accompanying Elle to hospital when she had an operation last year.

If you see a service dog like Kobash working, resist the urge to pat them without asking first. Elle says while the dogs are trained to cope with any situation that might come their way, their mind is still on the job — even if it looks like they're not busy.

"You aren't to pat guide dogs at all, that is taboo, or hearing dogs either. But if you ask, you can pat Kobash and dogs like him.

"You do have to ask. He could be doing something for me at the time that needs his attention. But once asked, if he isn't busy I can get him to say hello.

"Having Kobash has been the best thing for me. I've come a long way since being able to have him."

For more information:

Assistance Dogs International has a list of organisations which provide service and assistance dogs in Australia.

Kobash is on Facebook: you can follow the adventures of the blue service dog here.

Monday, 24 March 2014

It's OK to like what you like

So, you like Doctor Who.  Or monster trucks.  Or needlework.  Or My Little Pony.  Or The Chronicles of Narnia. Or the Datsun Sunny.  Or the snippets of trivia on Libra packets.

And that's OK.

I think our interests choose us at least as much as we choose them.  You can't just will yourself to like something.  And if you do like something, you shouldn't have to pretend you don't for the sake of appearances.

by drkcaey on Wikimedia Commons
Most of us recognise this, at least in relation to other people.  We hear about a little girl being bullied for liking Star Wars, or a little boy for liking My Little Pony, and we recognise that it's unfair and messed up.

But often it's harder when it comes to ourselves.  There can be a lot of layers of hang-ups and shame - some from other people, some created by our own minds - about the things we like.

There's the idea that women are supposed to like one sort of thing and men another.  Other interests are restricted to people with specifically shaped bodies. (Cosplaying while fatPrepare to be hated on for daring to enjoy yourself and engage in fan activity!)

Age-appropriateness is another hang-up.  A lot of people on the spectrum have interests that don't necessarily match their age - little kids who are into string theory or Medieval plainsong, adults who are into kids' cartoons or toys.

Some interests are more fashionable than others, and this runs in cycles.  When I was a kid, everyone loved Doctor Who.  When I was in my teens, everyone except me seemed to hate it.  Now everyone loves it again.

It doesn't matter.

It doesn't matter if you're not the intended target audience for the thing you like.

It doesn't matter if other people who like that thing are older or younger than you, or fatter or skinnier or otherwise different from you.  It doesn't matter if there are no other people who like that thing you like.  (There will be some, you just haven't found them yet.  They're out there, I promise.)

It's OK to like what you like.

Thursday, 20 March 2014

Synesthesia: meet my friends the numbers

Synesthesia is what happens when things that are supposed to press one sensory button accidentally brush against other ones on their way through.  It can happen in all sorts of combinations, but the most common forms are where numbers or letters appear to have colours or sounds.

Because my brain doesn't do "common", I have a much weirder variant of synesthesia: ordinal linguistic personification.  It's hilarious: for me, numbers have personalities.  It affects some words and objects as well, but it's most obvious - and ridiculous - with numbers.

I perceive most odd numbers as male and evens as female, something my brain decided for itself without Pythagoras' help.  But some, especially once you get into higher numbers, have indistinct or fluid gender.  Some are young and some are old, and that bears no relation to their numerical value.  Some are fairly bland - 1 is just a guy, standing there - while others have fully formed personalities. 

Mathematics usually doesn't come into it - the personality of 3 is in no way a combination of the characters of 1 and 2.  But then sometimes it does, because 48 is 6x8 and that's just skeevy and wrong and possibly incestuous.  But 21 is 3x7 and that's awesome.  I don't know why.  Ask my brain.

Speaking of brains, we're not altogether sure what causes this particular form of synesthesia.  One theory is that there are some crossed lines between the bit of the brain that recognises sequences of numbers, and the nearby bit that does theory of mind and picking up peoples' personality traits.  Another school of thought locates the quirk in the magnificently named retrosplenial cortex,which sounds like it should be a Gothic cathedral with dark wood and a high vaulted ceiling, with light streaming in through coloured glass.

I'm not particularly good at mathematics.  Once it comes to theoretical stuff with x's in it, I'm really quite rubbish.  I'm utterly inept at number puzzles like sudoku as well.  Whether or not this is related to how I perceive numbers, I have absolutely no idea.

So, what are the personalities of these numbers like? 1 is fairly nondescript.  2 is plump, friendly and hard working, whereas 4 is slimmer and takes no shit.  5 is earnest and serious and hands-on, unlike 3 who's more inclined to academic, philosophical questions.  6 and 8 are both very feminine, although 6 is giggly and girlie and 8 is more grown up and sophisticated.  7 is that guy you don't trust but you're not sure why, and 9 is a wise old bloke with a beard.

Here's a chart, to help put that in pictures:

Monday, 17 March 2014

Monday Muster

Happy Monday, dear ones.  Have a cheerful little chirping chappie:

I've been busy sorting out my new Pinterest account.  I'm pinning a lot of Aspergers- and autism-related stuff, and have started a series of different boards to keep things organised.  Here's what I have:
  •  Autism by Autistics: a group board specifically for pinners on the spectrum. Leave a note on any of my pins if you'd like an invite
  • Aspie Life: anything and everything to do with day-to-day life on the spectrum
  • Creative Aspies and Autistic Peeps: artists, writers, musicians, and other creatives of the spectrum
  • Diagnosis: for stuff related to getting an autism diagnosis, particularly for adults
  • Disability Issues: pins about disability rights and activism, not always specifically autism-related
  • Executive Function: getting stuff done in spite of it
  • Ladies of the Spectrum: pins about and relating to Autistic females
  • Neurology News: not specifically autism-related, but general interesting neurology stuff
  • On The Job: still pretty bare, but this will be about employment for people on the spectrum
  • Relationships: social stuff, everything from making conversation to finding a partner
  • Sensory Shenanigans: pins relating to sensory sensitivity and how to handle it
  • Stimming: all flapping, all the time
Or, if you'd rather just see the lot, you can follow me here.

Why do we remember every bad thing that's ever happened and every bad thing said to us, but the good stuff doesn't stick as well?  It's called negativity bias, and it's because we learn more from bad experiences than from happy ones.

If executive function issues are getting between you and organisation, you might be interested in Angel the Alien's adventures in DIY filofax-style organisers.  Actual filofaxes are expensive, but with a folder and some time spent doing up her own personalised page templates, she's made her own for a fraction of the cost.  (Bonus points for lots of pretty colours, too!)  Check it out here.

A lot of people in the autism community will tell you that 'functioning' labels are cobblers.  Because we're people, we grow and change and have different strengths and weaknesses and react differently in different situations and have good days and bad days.  We can be 'high functioning' in one specific way but 'low' in another.  Or in different environments.  Or on different days.  Michael Forbes Wilcox has another reason why they're slippery: clinically, they're based on IQ, and IQ just isn't the gold standard of a person's ability and worth it's held up to be.  There are a lot of different kinds of clever that just aren't measured by IQ tests, and sometimes they're the very kinds of clever you need to get on in life.

It's nice to get a reward when you do something well, and therapy for kids with developmental delays sometimes features rewards for successfully completing a task.  And, from an obesity hysteria perspective, I suppose a small toy is better for a kid than a lolly.  But what when the reward system gets out of control, and you end up knee-deep in useless plastic tchotchkes?  It sounds ridiculous, but that's exactly what happened to the little brother of M Kelter from Invisible Strings.

Writing for the Huffington Post, John Franklin Stephens takes aim at people who insist they don't "mean anything" when they use the word "retard":

"Let's face it, nobody uses the word as a term of praise. At best, it is used as another way of saying "stupid" or "loser." At worst, it is aimed directly at me as a way to label me as an outcast -- a thing, not a person. I am not stupid. I am not a loser. I am not a thing. I am a person. 

"It hurts me to think that people assume that I am less than a whole person. That is what is so awful about slurs. They are intended to make their target seem smaller, less of a person. People who live with an intellectual disability do not have an easy life. We have to fight to understand what the rest of you take for granted. We fight for education. We fight to live among the rest of you. We struggle to make friends. We often are ignored, even when we have something to say. We fight so hard to be seen as whole people. It hurts so much, after all that struggle, to hear you casually use a term that means that you assume we are less than whole."

Read the whole piece here.

Thursday, 13 March 2014

Aspergers, truth and lying

One of the stereotypes about Aspies is that we don't lie.

Like most of the stereotypes about Aspies, it's not terribly accurate.

There are some people on the spectrum who can't or won't lie.  It might be for any number of reasons: maybe it doesn't occur to them, maybe they literally can't, maybe they don't see the point, maybe they've made a conscious choice to reject that particular social game.

But there are also people on the spectrum who can lie like pigs in shit.*

I should know.  I used to be one of them.

You wouldn't know my girlfriend, she goes to another school
When I was a kid, I told some really tall tales.  They were readily identifiable as bullshit, because I didn't even try to make them believable.  At one stage I may have put it about that I'd got an extra role on Degrassi Junior High, which a) had ceased production three years earlier, and b) was made in Ontario, a place notable for how much it isn't in Australia.

Now, looking back as an adult who knows better, this is absolutely mortifying.  What on earth was I thinking?  What must the people I told have thought?  And why the hell did I do it, since Aspies are supposed to be all truth, all the time?

Turns out, this isn't uncommon.  I've seen various questions asked by the parents of young Aspies with a creative grasp on the truth.  Often, their stories seem to be the the same kind of wildly unrealistic stuff I came out with.

I can't speak for anyone else, but I think I know why I did this.

When I was a kid I had a really powerful imagination, and since most of my obsessions were (and are) related to TV, movies or books it was getting plenty of ammunition.  Then, on top of that it took me longer than most children to learn to clearly differentiate between fantasy and reality.  I also didn't have a lot of social interaction sometimes, for various reasons, so I didn't always have someone to provide a reality check before my mind and my mouth ran away.

This combination of factors means I said a lot of stuff that wasn't true, but that I thought was true or that felt true for me at the time. 

I think there was an element of pretend play it as well.  A toddler wrapped in alfoil running around the lounge room shouting "look at me! I'm an astronaut!" isn't lying, as such, although it's obviously not the truth.  It's a pretend truth, and there's all sorts of developmental stuff going on there.  But by the time you're an older child or a tween, pretend play is obviously, like, so not cool, even if developmentally you're quite a bit behind your peers.  So narrating, rather than acting out, our make believe might be a way to get around that.

I can't remember whether attention seeking came into it.  It probably did.  But I think it was more of the "look at me, I'm an astronaut" type, rather than the "I'm so cool and awesome" variety of lying.  It was, I think, about wanting to share and acknowledge whatever weird and improbable shit was going on in my head at the time.

Look at me, I'm an astronaut!

*This saying annoys me no end, because it's not accurate - a pig would usually rather be clean, if it had a choice.  But it's far more colourful and evocative than my usual "to lie like a rug".  Which I learned from Degrassi, strangely enough.

Monday, 10 March 2014

Sensory issues in autism are a really big deal

It's just light, get over it
Autism is known as a social condition.  Social deficits and differences are the whole reason it's A Thing.

But there's a lot more to it than that: obsessions, stimming, ropey motor skills, love of routine and order, executive dysfunction, hyperfocus, and sensory disregulation.  Some of us will have all of these, some only a few, but most of us have some of them.

But they're often treated like a side salad to the social skills steak: most interventions and therapy seem to concentrate on social skills, and our success, failure and "functioning" is determined largely by how well we perform socially.

I have a theory that the reason the social skills are seen as the biggest, most important part of the condition is because they're what affects other people.  If we don't make eye contact or we blurt out something inadvertently hurtful, that affects the people around us.  If we're annoyed by the tag in the back of our shirt or the smell of tomato makes us gag, the only person who has to live through that is us.  (Right up to the point where it gets too much, and we completely lose our shit for reasons that make no sense to anyone around us.)

If you have to live through those sensory shenanigans, they're a really big deal.  If there was one thing I could 'cure' about the way I am, it'd be the sensory stuff.

Because if that stuff was under control, and I didn't have to take it into account while I'm working and eating and shopping and dressing and doing every other thing ever, I'd be way better at the social stuff.  It's really hard to be sociable when you're distracted, uncomfortable, in pain, or literally can't hear the conversation you're trying to have over all the other stuff your brain can't filter out.

This video by Aspergers Experts (a website run by two young chaps on the spectrum) agrees.  It goes for nearly a quarter of an hour, but is worth a watch.  They liken the various levels of stuff we have to deal with to a bunch of stuff in a funnel, with sensory stuff at the bottom, then self-awareness, then focus, and so on up to social skills at the top.  You can start by chipping away at the social skills, or you can unclog the bottom of the funnel by sorting out the sensory issues, which gives a lot of other stuff a chance to fall into place.

The video touts exposure to sensory irritants - specific smells, for instance - as a means of building up resistance to them.  This has never worked for me.  Deliberately exposing me to a troublesome sound (sound's my biggest problem) is just going to create an angry, snappy Aspie who's still going to have just as much trouble with that sound the next time it happens.

But if you can find a technique that works for you - whether that's exposure, earplugs, headphones playing white noise, or avoiding the source altogether - I believe it can make you a much happier, more comfortable person.  And a more sociable one, too.

Thursday, 6 March 2014

Yeah, maybe Aspergers is a "disorder" - is that really such a bad thing?

"Autism isn't a disability, it's a difference!"

"Without Aspergers, we'd still be in caves!  It's responsible for all the great moments of human achievement!"

"Aspergers is great because Einstein!"

These arguments really get on my wick.

Before you leave an angry comment, hear me out:

A lot of people will, at this point, be ready to argue that it's not a disorder or a disability because having Aspergers is not, in itself, a bad thing.  And the social model of disability* agrees: it's not the condition that's disabling, but society's (lack of) ability to deal with it.

But there's a problem here.  Actually, there are a few.

The first is that some people with Aspergers genuinely are disabled, are really struggling, and often can't get the help they deserve because so much of the autism industry is aimed solely at small children.  To those people, "Aspergers isn't a disability!" comes with an unspoken "therefore, you are a failure".  To argue that Aspergers isn't a problem erases the most vulnerable members of our community, those people who are in desperate need of real, practical help.  It also potentially does them a great disservice: in a situation where there are few resources and many people in need, it provides an argument to turn them away.

The second is that it smacks of ableism.  Is disability really something one has to make a point of distancing oneself from?  There's an aroma of "we're not like those people!" which sits uncomfortably with me.

Stop bringing me into this, guys
The third problem is that posthumous fan-diagnoses of famous awesome dead people are largely cobblers.  We don't know and will never know whether Einstein was autistic, or Leonardo da Vinci, Thomas Jefferson, Michelangelo, Mozart, Nikola Tesla, Isaac Newton, or any of the other famous awesome dead people speculated to have been on the spectrum.  Not only were they never diagnosed in life, but in many of these cases they died so long ago there's not a single living person who can tell us what they were like.  If it's that easy to remotely diagnose a person who hasn't breathed since the sixteenth century, why's it so complicated, expensive and time-consuming to get a diagnosis for a living person?

If you choose to believe that Tesla or Newton or Einstein were on the spectrum, go for it and more power to you.  We all need role models, and if you find meaning and inspiration in those remarkable people and their legacy, seize it with both hands and go forth and change the world.  But we can't use them as an argument for why Aspergers is awesome, when there's no way to really tell if they had Aspergers.

And if they were, they're still hardly representative of all people on the spectrum.  The spectrum - as the name suggests - covers people of all abilities and skills and interests.  And that's OK.  We all deserve to exist, to be here and to be treated with respect.  Not because we share a tenuous link to a long-dead genius, but because it's a fundamental human right we all deserve.

Whether or not we have a disability.

*Social Model 101: the social model of disability argues that it's not the condition itself that's the problem, but the way society deals with it.  So, a wheelchair user isn't disabled by whatever condition has led to them using a wheelchair, but by a society that doesn't provide ramps, lifts, accessible loos and ATMS, and the other things they need to get about their lives.  Solve the accessibility problems, and they're no longer disabled.  It's very different from the medical model of disability, because it puts the onus of fixing things on society to create a community where everyone can function, rather than on the individual to get better or to shoulder the whole burden of 'fitting in'.

Monday, 3 March 2014

Hate: the letter and the spirit of the thing

*Trigger warning for some ableist slurs in the middle paragraphs of this post.  I don't normally use trigger warnings on this blog, but this time I think it's only fair to give warning.*

No matter who you are, there's someone out there who hates you just because you exist. Maybe they don't like your gender, your skin colour, your religion or lack thereof, your nationality, your job, where you went to school, your social class, which sports team you support, your genitals or what you do with them.

Now, this isn't meant to be a radical statement, but I think hating a whole bunch of people you don't even know just because they're gay, brown, or Protestant is a dick move.  (Then again, I live in a state where a billboard of two men kissing has been banned, so maybe it's a more radical position than I realise.)

I reserve the right to hiss at you for arbitrary reasons!
I wonder if there's a tendency for people to realise that a specific type of hate is wrong, but then not extrapolate that idea any further.  They get that sexism is not cool, or that racism is a brain stem response to a frontal lobe situation, but they don't go so far as to think "hey, why don't we treat all people equally and with respect?"

This is my theory to explain why people who should know better, who have demonstrated their even-handed and magnanimous nature in matters of gender, race and sexuality, can still be ragingly ableist to the point they'll get shouty if you even suggest that ableism is a thing that exists.

I don't just mean overt stuff, the people who openly advocate for the euthanasia of anyone with a sniffle or who expect four year olds to rattle tins on street corners to pay for their own wheelchairs.  There are people who think that, and it's scary, but ableism is often much more subtle, and much more pervasive.

Take the use of words like "retard" and "nong" as a synonym for rubbish, broken, stupid, or otherwise under par.  The problem's not just that you're taking a word that's been used to bully, abuse and belittle people and using it in casual conversation, potentially triggering all that hurt and pain all over again just because of the deficits of your vocabulary.  The problem is the implied belief that people with intellectual or developmental disability are rubbish, broken, subnormal, worthless, and as such are a suitable analogy for the printer that won't work because you've plugged it in wrong.  If it weren't for those unspoken assumptions, the use of that word in that situation wouldn't make sense.

Take the idea that health care and disability support services are a privilege, rather than a right.  Our society measures a human being's worth in dollar signs, and if you happen to need more or different care than the next person, you're considered a drain on the taxpayer and people feel entitled to discuss whether or not your life is worth sustaining, as though you're a theoretical concept rather than a human being who deserves to exist because existence is a basic human right.  (And don't tell me we can't afford to care for our disabled citizens - we're not so badly off that we couldn't afford to send our largest contingent ever to the Winter Olympics recently.)

It's not really about words though, and stopping people using the words won't change the thinking behind them.  But by the words people use, you can glean an insight into how they think.  And sometimes,what you learn is disheartening.  Because for all that, collectively, we're starting to get our heads around specific kinds of discrimination like sexism and racism, we're still a long way from respecting all people as equal.