Saturday, 31 May 2014

Further adventures in overthinking things

Current earworm: Geronimo by Sheppard.

For the benefit of any 27th century archaeologists reading this, this song is everywhere at the moment.  In fact, I think a big discount store near work has had it on a constant loop for the last month, because literally every time I've been in there (which is frequently, because they do big bags of choc honeycomb for $4) there's been someone hollering "bombs away!" over the crackly speakers.

Here's the film clip, without which the rest of this post won't make a lot of sense:

The film clip's got me thinking about this thing I have with fantasy and reality.

Yes, I can tell fantasy from reality - at least, insofar as anyone can.  All of us inhabit not just the tangible world but the world of our mind and imagination, and we all experience a whole lot of stuff that's no less real for not having actually happened in any quantifiable sense.

But little kids can't tell fantasy from reality the way older people can, and I think it took me longer to get my head around the concept than it takes most kids.  Certainly I remember being ten or twelve and really freaked out an episode of The Goodies called The End, in which the boys' office gets encased in concrete and they're trapped for eleventy billion years.  The Goodies is not gritty drama.  It is not graphic.  It is not realistic.  It's a 70s British comedy that spawned a song called Funky Gibbon and some unfortunate overalls.  It is not nightmare material.

Unless you're me, apparently. 

My mind does this thing where even though I know it's not real, a part of me thinks it is or it could be.  Then I either freak out about it (in the case of gore, violence, or implied cruelty or suffering of any kind) or take it seriously and try to analyse it and make sense of it even though that's patently ludicrous.

Which brings us (at last) back to Sheppard and their cardboard-based music video.  I know trying to analyse such a thing is ridiculous.  And obviously, I know it's not real.

But it really bugs me that in the big final battle they've put their big game-changing Frankenstein's monster secret weapon at the back of the group, behind all the fragile humans including one wrapped in bandages, rather than out the front where it's the first thing the enemy encounters.  What the hell sort of strategy is that?

Thursday, 22 May 2014

On labels

 Around the web, some discussions are taking place about the relative merits of describing oneself as having autism or Aspergers, and identifying as Autistic versus one of the various Aspergers-derived terms like Aspie.  Here, for instance.

I call myself an Aspie partially because that's my diagnosis, but also because the spectrum is so vast, and my own place on it so unremarkable, that it feels presumptuous to describe myself as "Autistic".  It feels disrespectful - like I'm claiming insight into and ownership of a whole suite of experiences I just don't have.

I used to describe myself as autistic for a while, but over time it just stopped feeling right.  So I stopped, and went back to Aspie.  It feels more honest.

Just to make it more complicated, at the moment I'm Schrödinger's Aspie: either on the spectrum or not depending on which doc you talk to.  While there is a very valid place for self-diagnosis, I wonder about people like me, who can pass well enough to have the professionals arguing about whether we're even on the spectrum or not, claiming the Autistic mantle as our own.  I worry that by describing my relatively minor difficulties as "autistic", I'm making light of the much greater challenges faced by other people on the spectrum.  It feels more like appropriation than solidarity.

This is why I like umbrella terms like "on the spectrum" or even more broadly "neurodiverse".  They cover Aspergers, autism, and other related conditions without leaving anyone out.  They cover the multitude of different identities within the spectrum - even within Aspergers itself you have everything from 'Asp' to 'Spergy' via 'person with Aspergers'.  In that situation, an umbrella term that covers everybody without singling out any one term as best or correct seems fair.

It's also about picking your battles.  Right now we have a lot of reasons to fight, from the loss of the Disability Discrimination Commissioner in the recent budget to the more general shafting of young disabled people, to the fact that the suicide attempt rate for Aussies on the spectrum is 433% that of the general population. (No, that's not a typo.  Four hundred and thirty-three per cent.)   Those are things we need to fix.

And I don't think it really matters what you call yourself while we do.

Tuesday, 20 May 2014

How to fold all sorts of stuff

I like procedures.

It's really comforting to have a set way to do things, whether the thing in question is rolling socks or buying a house.  Having a known system for doing something makes doing it so much easier, and has a lot of other benefits as well:
  • Efficiency, because you're not wasting time figuring out how to do it or re-inventing the wheel every time it needs to be done
  • You can research the best way to do it and follow that system, rather than relying on whatever half-arsed technique you were able to figure out on your own
  • For physical tasks, with practice and muscle memory the process can become automatic.  This frees your mind up to think about other stuff while you're working
  • If inertia or procrastination are problems for you, knowing exactly what you have to do and how can help break through them
  • A feeling of control and competence in a world where both those things are really pretty scarce.

So, speaking of procedures and efficient ways to do things:

how to fold all sorts of stuff

So, you have a big basket of freshly washed laundry waiting for your attention... here are some techniques to get started. These videos aren't mine, but have been made available by various helpful people. You can find out more about the owners by clicking through from the individual videos to the originals on YouTube.

How to fold a t-shirt super quickly:

And a button-up shirt:

How to fold pants, with different methods depending on whether they've got a flat front or creases:

How to fold a hoodie:

How to roll socks:

How to roll undies:

How to fold towels and other lineney things:

And the bane of most folders' existences - how to fold a fitted sheet:

Saturday, 17 May 2014

Shadows dancing on a cave wall

I'd like to talk about this guy:

Plato, as depicted in Raphael's The School of Athens

Plato had a lot of ideas, most of which I'm not well enough versed in to have formed any sort of opinion.  But I've thought a lot about his parable of the cave over the years, and it really bugs me.  It prickles because I kind of see myself in it, in relation to my special interests and my internet use.

The general gist is that there's a bunch of people in a cave, sitting facing the wall, and they've always been there and that's their life.  Behind them there's a fire, which they've never seen, and stuff passing between them and the fire casts shadows on their wall.  Their reality, the total sum of their knowledge and experience, is those shadows.

Joseph Wright
That's a pretty crap way to live.  The world is so big, and for all its badness it's so beautiful, that it's a crying shame to not get out (or not be able to get out) and experience as much of it as possible.  There are things to see and to do, experiences to have, food to eat, music to listen to, people to meet, there's fun to be had and work to be done.

So why do I spend so much time on the internet, not doing it?

Sure, you can argue that stuff done online matters, and it sort of does.  It's a means of engaging with people and finding likeminded souls in ways that's not always possible in the physical world.  It lets us look things up so much more easily than in the days when you had to rifle through index cards in long library drawers.  It exposes us to culture and ideas we might have no other opportunity to experience.

(The internet's also a great way to find awful people, horrible things, meaningless drivel, and lies, but that's a whole other discussion for another time.)

But the internet isn't and can't be and shouldn't be a replacement for actually doing stuff.  One half-decent home cooked meal is more valuable than a thousand pinned recipes you'll never try.  Trying your hand at knitting or sewing or carpentry and having something to show for it, however wobbly, is more rewarding than watching any number of tutes on YouTube.  And watching videos of people being together and having fun is a poor substitute for actually being with people and doing fun stuff and worthwhile things yourself.

For instance, I've noticed when I'm lonely I tend to end up watching Top Gear.  And that's great to pass some time, but really I'm watching other people laugh and be friends because it's easier than finding laughter and friends of my own.  Well, in the short-term, anyway - because while it can be a distraction from the need for real life changes, it doesn't fix the underlying issue.

But getting out there and doing things can be scary and really, really difficult, and sometimes genuinely impossible.  You might have to try and fail a dozen times before you have any sort of success, and when your failures involve social rejection and screwing things up in public they hurt.  It takes a lot of willpower and resilience and optimism to keep going in the face of that.

But maybe it's worth doing, to get out of the cave.

Thursday, 15 May 2014

Cooking up a new food app for adults on the spectrum

Do you have trouble with food?

Maybe it’s finding something tasty and vaguely healthy to eat that doesn’t your trigger sensory sensitivities.  Perhaps it’s the executive function needed to go grocery shopping and keep the cupboard stocked.  Maybe it’s finding and following an appropriate recipe.  Add ropey body awareness that might mean you forget to eat because you don’t recognise that you’re hungry, or over-eat because you have trouble telling hunger from other sensations like anxiety, and it’s small wonder a lot of people on the spectrum find mealtimes problematic.

That’s where My Ambrosia comes in. It’s a mobile app under development in Ireland for adults on the spectrum, dealing specifically with meal planning, grocery shopping, and food preparation. It’s the work of Myriam Leggieri, and combines her work in technology - she’s doing her PhD in computer science - with her volunteer work with the Galway Autism Partnership.

The app will be able to recommend recipes and help users plan meals for a week in advance. It then breaks the recipes themselves down into step by step instructions, complete with images or videos for people who need information presented visually. It also keeps track of supplies, so you don’t find yourself riceless on risotto night.

My Ambrosia has made it through to the second stage of the Student Entrepreneur Awards, which provides seed funding to help students turn their ideas into going concerns.  Getting through to the final round involves putting together a business plan, including market research. That’s where we come in.

The project needs feedback from adults on the spectrum. There’s a short survey that goes through how you cook, your dietary requirements, and your grocery shopping game plan. By taking part, you can help this app become the most useful resource it can be for people on the spectrum.

If you'd like to take part, you can get involved here.

Tuesday, 13 May 2014

Are online friends as good as physical-world friends?

The internet's changed the way we do friendship.  Our social circle's no longer limited to people who happen to be in our geographic area, or share our school, place of work, church or sporting team.  The web lets us find others with similar interests or politics or points of view no matter where in the world we are, or they are.  For a lot of people who are different, especially living in areas that may not be particularly tolerant or welcoming, it has been a lifeline.

by cherylholt on Pixabay
But online friendships can be very different from physical-world friendships.  On one hand you have someone you identify with closely but have never and probably will never meet in the flesh, with whom you share opinions and ideas but not physical experience.  On the other you have someone you were thrown towards by the lottery of fate and circumstance regardless of your compatibility, and your main bonds are those of proximity, shared experience and the brain-chemical witchcraft of social bonding.  Perhaps it's a testament to how much faster our technology is developing than our language that we even use the same word to describe such different relationships.

For a while now I've been turning the idea of online friendships versus physical-space relationships over in my head, trying to work out if the former was as good as the latter, better, or less good.

I think the answer is none of the above: they're just different.  The relationships work differently, they fulfil different needs, and they'll involve different sorts of people.

The opportunity the internet gives us to seek out others like ourselves is a great thing, particularly for people who are different; not just people on the spectrum but people of any sort of minority from disability to language to gender to liking a really obscure TV show.  If that's you, and fate's planted you a long way from your peers, the internet could be your only option to find them.  Finding them, finding out that you're not alone, can be a great relief.  It's not just about discussing the thing that makes you different, but the sheer luxury of having a space where you can fart about and have fun with other people who accept you and don't judge you for your difference.

But what online friendships can't do is the visceral physicality of being human.  They can't help you move a couch or bury your dog.  They can't give you a hug, dry your tears, hold your hand. 

Physical-space friends can do that.  They can be tangibly present in a way online friends can't.  They also share your physical reality - from the weather to the state of the local economy, there will be parts of your life that they get in a way someone at a distance can't.  With them, you can share the bonding that comes from doing physical things together and all the weird social chemical stuff that only happens when we're together face to face.

But they don't necessarily share our philosophy and values and love of 80s Japanese theremin music the way our online friends do.

I think we need both: the friends we can share a physical space with, and those with whom we share a deeper intellectual, spiritual or identity-based connection.

And if we're really lucky, the streams can cross and they'll be the same people.

Saturday, 10 May 2014

Independence isn't really a thing

Nobody is independent.  Not really.

We're all reliant on each other, because society - for all that it's flawed and broken in so many ways - is a thing that exists and we're all part of.  And for all that society can be wretched and needs a lot of work, we've all come much further for being a part of it than we ever could alone.

Even if you live alone, work to support yourself and run your own household, you're not really doing it all yourself.  You might drive yourself about, but in all likelihood someone else built your car and the road you drive it on.  The GPS that tells you where you're going was built by someone else, as were the Navstar satellites which make it work.  If you wrap your car around a tree someone else will come and cut you out and take you to a hospital funded by the taxes of many people you've never met, where some other people will stitch you back together.

So much of our lives depends on others, that the difference between a person we'd consider "independent" and one we'd call "dependent" is really quite small.  Both rely on vast amounts of public infrastructure, on an army of professionals and tradespeople and service workers, on laws and guidelines and procedures and standards and the people who enforce them and who make them in the first place.

We're all dependent.  We all need each other.

Not pictured: human being

Thursday, 8 May 2014

Baby I can drive my car

Remember the other day when we were talking about whether Aspies can drive?  Well, this one can.  I've covered a lot of miles and had a lot of opportunities I would never have experienced if I couldn't drive.

Living in country Australia, being able to drive is a massively important part of being an independent adult.  Regional and rural communities often have no public transport, or a system that caters predominantly to schoolchildren and retirees.  If you had a business-hours job in one of the main traffic areas of my town you could probably get there and back by public transport, but if that job required shiftwork, or was based in an industrial area, you're out of luck.

Adventures in western NSW

I have a licence that theoretically allows me to drive a Bugatti Veyron down the West Gate Freeway, but I usually just pootle around moderate-sized towns in a tiny automatic.  Occasionally I'll mix it up with a long fang down a highway, preferably a quiet one in the bush rather than the busy Bruce that winds down the coast. 

Driving in cities scares me.  I can cope, more or less, especially if I have a GPS to help me navigate.  (Audio turned off, thank you.)  But I'd rather not.  I don't like cities in general, but I don't like their streets in particular.  It's a combination of the volume of traffic, the speed, and the complexity of the system I'm trying to navigate.  I'm not convinced city drivers as individuals are any more aggressive than their country counterparts, but they seem to be because there are more of them on the road with you.

I can drive, and for that I'm very grateful because in these parts it's very hard to get around if you can't.  That in turn affects your ability to work, study, socialise, and generally have any sort of life at all.  But even so, it's something I do because I have to rather than because I enjoy it.

Bring on the portal technology.

Tuesday, 6 May 2014

Of activism and ableism

I'm not an activist, and this isn't an activist blog.

I do however, do things that could be described as "activism" from time to time.  Stuff like signing and sharing petitions, writing letters to politicians, organising or participating in media coverage of issues that matter to me, and coaching others in how to get the word about about the ones that matter to them.

generated here
But I don't call myself an activist. Part of that's because I don't really like calling myself anything.  I'm not a writer, I just like writing.  I'm not a Whovian or a Pegasister or a whatever you call a fan of Mythbusters, I just enjoy those shows.  I don't identify with a political alignment, an organised religion, or a job title that fits neatly in a box.  I'm just not big on labels.  Labels are written in ink and have square edges, whereas identity is fluid and changeable.

But part of it is because on occasion I've had my kind of activism - the letter-writing, post-sharing, talking-to-people-in-private kind - mocked and dismissed by the shoutier, placard-waving type of activist.

And that's what this post is about.  Let's talk about how the idea that 'real' activism is marching in the streets and chaining yourself to things is really quite privileged, and in particular ableist.

In the first instance, taking part in a physical protest means being there.  That, particularly in a country the size of Australia, takes time and money.

If you're living in poverty - like one in eight Australians, and more than a quarter of our disabled population - you can't just take off wherever and whenever you like.  Whether it's an interstate flight or public transport to the other side of the city, if you don't have the cash you're not going.  Driving yourself requires not only being able to drive but also having a car and money to run it.

Then there are the logistics: if you need wheelchair-accessible buses, if you're vision impaired but the trains don't have reliable audio station announcements, if you struggle with sensory overwhelm in crowds or the cognitive tasks involved in planning and executing a complicated trip across multiple modes of transport, if you need to find a support person willing and able to make the trip with you, those are all very real issues that can't be ignored.

If you work or go to school, you can't just take time off whenever there's a rally to attend.  If you have responsibilities or caring duties, from a child to a parent to a cattle station, they don't stop for politics.

And when you do get there, will the site itself be accessible?

The other issue is one of respect.  It's about acknowledging that people have different abilities and strengths, and respecting people who are doing what they can, how they can, with what they have.  It's about respecting that some people are good at in-person confrontation, but others are good at writing or art or the mobilisation of online communities.  If you only think one kind of activism matters, or that the contributions of people with different skills and resources and abilities are less important than yours, it's time to take a long hard look at yourself and what you're fighting for.

Just like you need more than one tool to grow a garden, so it takes more than one tool to grow a better future.  Yes, there's a place for shouting and civil disobedience.  But there's also a place for letters, for quiet words in the right ears, for humour and gentleness.  There's a place for everyone.

Saturday, 3 May 2014

Aussie, disabled and queer? Tell your story

If you're an Aussie, have a disability, and are Gay, Lesbian, Bi, Trans*, Genderfluid, Intersex, or Queer, there's a researcher who'd like to have a chat with you.

Christopher Brophy's PhD research project Queering Ability: Queerness, Disability and Resistance is looking at the experiences and day-to-day life of people who identify as both disabled and GLBTI+ or otherwise non-hetero or non-cis. It's also about living with, and challenging, cultural ideas and stereotypes about sexuality and ability.

Christopher says the research grew out of many of his own experiences.

"My own experience as both a gay-identifying man and someone with a less visible disability is an influence," he says.  "I can see some aspects of my own experience in participants' stories.

"Other influences would be my previous work in the disability sector, and the passionate people - with and without a disability and everything in between - who I met and learned from.  Certainly my current social work practice in a LGBTI support and community education service is a big influence too."

On a more abstract level, the research is also about questioning the idea that there's a 'normal' way to be - which just happens to be straight and cis and non-disabled. It's looking at how marginalised people, which both disabled people and people who are non-straight or non-cis often are, find a place in the world, dealing with or actively fighting back against those ideas about what is and isn't 'normal'.

"There is certainly research out there on sexuality and disability, though much of it remains hidden away in the academic journals," Christopher says.

"Historically the research has been biomedical in focus, though this is changing and quite often led by disabled-identifying people themselves. There isn't much at all on gender identity and disability. So there needs to be a lot more work across the board, and specifically, work that explores people's experiences in a grounded and positive way."

The idea of disabled people as sexual beings - especially in ways that don't fit that view of what's 'normal' - is one that makes some people uncomfortable. But perhaps that squickiness is all the more reason to get this discussion happening out in the open.

"Even though we don't often talk about it or name it, that Western cultural idea that people with a disability can't or shouldn't have sex lives and be able to express their sexual and gendered identities, is an incredibly pervasive and powerful one," Christopher says.

"The human rights work happening at the national and international level, particularly by WWDA, around the forced sterilisation of women with intellectual disability is an area where the pervasiveness of those cultural ideas and that 'uncomfortableness' crosses over into what could only be described as violence. So there is that really serious element too."

Getting involved in Queering Ability means doing two one-hour interviews on the phone, via Skype (video, audio or chat), or if you're in Tasmania you have option to do the interviews in person.

Either way, you'll receive a $30 Coles Myer gift card as a token of thanks, as well as the opportunity to contribute to the discussion of what 'normal' looks like when it comes to ability, sexuality and gender identity.

You'll need to be 18 or over to get involved, and you don't have to be out about either your disability or your sexuality or gender.  Your participation is confidential, and you'll only be referred to by a pseudonym in Christopher's thesis and any other write-ups about the research.

To get involved or find out more, click here.

Thursday, 1 May 2014

Catastrophising: learning to stop freaking out about things that may never happen

I'm prone to catastrophising.

It's an unhealthy thinking pattern where you fixate on one small problem, or potential problem, and build it up in your mind until it is (or will be) the worst thing to ever happen in the history of humankind.  Say you find one typo in an assignment after you've handed it in: rather than just kick yourself for it and then let it go, you stew over it until you're convinced the whole assignment is a write-off, you'll fail the subject, get kicked out of school and end up unemployable and homeless.  All because of one typo in one essay.

It's quite an easy rut to fall into, especially if you tend to ruminate and obsess over things as a lot of Aspies do. 

Never trouble trouble, til trouble troubles you

But worrying about the future won't change it.  All it will do is ruin the present with constant stress and distraction, and burn up precious energy that could be used more productively.  Many of the troublesome things we think we see through our precognitive long-distance goggles will never come to pass, and even if they do they probably won't be the utter disaster you're imagining.

Catastrophising can affect your relationships and your actions, and even bring the very thing you're worried about into being:

Say your catastrophising mind decides your partner is going to leave you because you think you saw her smile at someone else in a cafe, you can become so convinced you start snapping at her and being mean, treating her as though her bit on the side was already a confirmed fact.  Meanwhile the partner, who just smiled because she was thinking about a nifty old TV show she found last night, is wondering why you're suddenly acting like such a complete knob... and whether you're worth the effort.

Having someone you can use as a reality check is really helpful.  Being able to ask a trusted friend, family member, or someone in the same situation (like a fellow student who did the same assignment) can help slay the what-if demons and call a halt to the imaginary battles.  It can be a valuable perspective recalibration to hear "Dude, even if you do get marked down, that essay's only worth ten percent of the grade for one subject.  Get over yourself."

Another thing to bear in mind is that even if the worst does happen, the worst probably isn't that bad.  So your partner leaves you: it'll break your heart, but ultimately you'll get through it and live to love again.  So you get a bad mark for one essay: it'll sting enough to remind you to proofread the rest more carefully and maybe you'll have to work a bit harder on the other assignments for that subject to keep up your average.

But the world will not end.

At least, that's what I'm telling myself...