Monday, 24 December 2012

Happy birthday, Nana

You read playing cards and tea leaves, and always saved the fat
when you cooked in the old kitchen out the back, Nana.

You washed your smalls by hand, saved your wash blue in a jar
and cursed the sky when dark clouds turned it black, Nana.

You knitted woollen booties, crocheted doilies, sewed our clothes,
and never realised nothing you made matched, Nana.

When I look into your photograph, I do not see myself,
I don't recognise the woman looking back, Nana.

You left our lives when I was small, to young to get to know you,
all my days I've quietly regretted that, Nana.

Now I read tarot cards and tea leaves, but I never save the fat
and I hope you can look down and smile at that, Nana.

Crocheted 

Christmas day is also the birthday of my late grandmother, Dulcie.  I love you and miss you, Nana.

Thursday, 20 December 2012

This heart

Romantic Heart form Love Seeds

 We've been here before
we'll be here again
but not with these hands
these eyes
these ears
this heart

We have just on chance
to be in this world
to work with these hands
these feet
these bones
this heart

We are together
for just this one time
so hold me with these arms
these hands
these fingers
this heart

So hold me and know
we'll face this as one
joined by these hands
this skin
this breath
these tears
these smiles
this heart

Monday, 17 December 2012

Music

Music bubbling like a breath underwater
Notes popping as they break the surface
My endless worries drift away
Like boats cut from their ties

Freeing me from becomings
Free to just be

A livlier tune now curls round the leaves
Shaking spring petals from the branches
Coiling like a spiral staircase,
Ever upwards, ever onwards

The view is ever changing,
Yet always is

Old fears retreat to distant shadows
Palest blue blips on the horizon
I move upwards, move onwards
Perspectives stretching as I climb

Away from the everyday
Towards forever

The Bass Department [Explored 4/4]
Photo by Chang Liu

written at Hill End, NSW, 2012

Tuesday, 11 December 2012

House of cards

Because I spent so much of my energy processing sensory stuff that most people can just ignore, I sometimes run out.  It's not that I have less energy than a neurotypical person, but I blow through it more quickly.

1937 Rolls-Royce Phantom III Sedanca de Ville - 103CP38 - fvr 

In general this is something I just work around.  I know I can't go out more than one night through the week, for instance, or I'll be exhausted for days afterwards.

But at the moment I'm crashing, quite badly.  I'm sleep deprived, haven't exercised much lately, my diet's not great, and I'm well behind on the housework and paperwork and other stuff that makes up everyday life.

It all started with a couple of late nights watching QI (an old favourite obsession which has recently returned with a vengeance) and from there it's just snowballed into a general state of apathy and not getting stuff done.  I'm tired in the afternoon so I have a nap instead of going for a walk, then wake up too late to cook a proper tea so I don't eat properly, and am alert past my usual bedtime so I go to bed late and don't get enough sleep... which means the next day I'm tired again, so the whole cycle repeats.

In one way it's a snowball, but in another it's a house of cards.  Dislodge one card (a few late nights, in this case) and the lot comes down and you have to start building all over again.

Dammit.

Monday, 3 December 2012

Inside the cupboard

Here's that cupboard I was talking about reorganising the other day:


The boxes in the top right hold my single-serve baggies of pasta and rice.  The two random orange things above the tomato sauce are bags of lentils that didn't fit into my filing system.

The box in the bottom  left is all the spices and dried herbs and the like, a little below eye level and all spaced out so I can see what's in there.  If I can't see it, I tend to forget it - when I cleaned out the pantry I found three unopened packets of ground ginger.  (I subsequently emptied two into the bathtub with some lemon peel and had a nice scented soak, and subsequent to that spent an hour combing the last of the ginger flakes out of my hair.)

The shop-brand Christmas pudding which isn't even a proper Christmas pudding on the top shelf is the only preparation I've made for Christmas, by the way.

Saturday, 24 November 2012

It must suck to be normal these days

Spare a thought for all those poor, poor People With Normality out there.

Not so long ago, they could go to work, school or social outings and never have to see anyone different from themselves.  They could use words like "retard" and "spaz" as insults without thinking of the actual meaning of those words.  They could move effortlessly through their world, secure that the infrastructure - both physical and social - was all designed with their needs in mind.  The social structures which guided their passage through life were so stable and secure that they never even questioned their existence, the way one never questions a mat's reliability to stay on the floor.

Storm Crowd 

 Now, though, things are different.

Now you will see people with all sorts of bodies and all sorts of abilities going about their day, and you'll have to get over the desire to stare, or avert your eyes, and deal with us like actual regular human beings.  Now you're expected to think before you speak (or type), and understand that even if you don't feel the term you're using is offensive, someone else might and with good reason.

If you've been brought up with the unspoken belief that one way of being is right, and others are wrong, damaged, broken, shameful, or a source of novelty, then suddenly being expected to turn that whole way of thinking around is a big deal.  Change is hard.  And that sucks.

You know what else sucks?

Being murdered

Being beaten to a pulp

Being assaulted by someone supposed to care for you

Being left to die in a fire

That's why, when the straight white able cis neurotypical dudebros whine because they've lost their right to use "retard" as an insult or park in the spaces closest to the shopping centre doors, they won't really get a lot of sympathy here.

Thursday, 22 November 2012

I can't have a pretty kitchen

When I moved into my current digs, I had high hopes for the kitchen.  It's less a room and more a sort of nook, and I was going to turn that crummy neglected-rental-house kitchen into something magazine worthy.  I dyed curtains, hung some old tin trays on the walls, and acquired some big glass jars and used them to store rice and pasta and other won't-go-offs in a line along a shelf.

It looked damn fine.  Just one problem: it didn't work.

So I've just started a project to redo my pretty artistic kitchen into something much more prosaic and industrial that I can actually use to make food and stuff.

never accept an invitation from a stranger unless he gives you candy -Linda Festa 

I've ditched the big glass jar idea - I'll go back to storing my button collection in them, sorted by colour - and instead invested in a few bulk packs of sealable sandwich bags.  The idea is that when I'm feeling spry and functional, I measure out my rice, pasta, cereal and the like into single serves (a cup for pasta and cereal, half a cup for rice and lentils) and put each one in its own baggie.  Then, come mealtime, I can just grab one and go instead of having to measure, or eyeballing it and massively overestimating how much I need.

It works for freezer stuff, too.  A big bag of mixed frozen veg becomes a week's supply of grab-n-go packs ready to be opened and tipped into a stir fry or a pasta sauce.  A pack of sausages can be split up and frozen so that I can defrost 2 or 3 at a time, rather than cooking the whole lot with the idea of saving the extras for work lunches, but then I somehow manage to eat them all in a day or two.

Pictures showing my workable but not pretty system are to come, once I get the kitchen clean.

Which may be never.

Monday, 19 November 2012

They don't write social stories to cover this sort of thing

I'm having a 'how do I behave in this situation' dilemma, and I need to solve it soon because I don't know how much more my bladder can stand.

About two or three in the afternoon I usually need a post-lunch cuppa to see me through until hometime.  Having a stereotypically tiny female bladder, this means about quarter past four I need to use the lavatory.


But...

The cleaner arrives at 4pm.  I don't want to go just after he's cleaned the loo, because that's surely a slight on his work, like walking in muddy boots over a floor someone's just mopped.  Similarly I don't want to use the bog just before he cleans it, because that's kinda wrong too, in a "LOL dude, you clean lavatories for a living and I'm going to remind you that we've been weeing in it all day.  Sucks to be you!" sort of way.

I may be overthinking this (Really?  You think?) but I am quite at a loss.

Just don't suggest skipping or rescheduling my afternoon cuppa.  Them's fighting words.

Tuesday, 13 November 2012

I have a problem with the social model of disability

That's not to say the social model of disability is flawed, it's just that there's one particular aspect that doesn't work for me.  Quite possibly I'm misunderstanding it, but either way it's giving me some pause for thought.

This model argues that we're not disabled by our condition, but by the society and infrastructure of the world around us.  People who use wheelchairs, for instance, aren't disabled by the condition which has affected their mobility, but by the stairs, crap footpaths, old buses, and the other things that prevent them from getting around using their particular mode of locomotion.

Applying this to Aspergers, we'd be talking about things like shopping centres that seem to be set up to deliberately cause sensory overload, about social convention regarding small talk and eye contact, and the odd situation whereby shouting "squee!" at a picture of a cat on a computer screen is considered normal but having a little flap when you're happy isn't.

But I'm worried that there could be a progression argued from "we're not disabled by our bodies, but by the way society's set up", to "we're not disabled".  And I think that's a dangerous path to go down.  Because, for some of us, it just is.  And whether that disability's caused by our own bodies or the way society responds to those bodies, that disability's still there.

It's a worry when it comes to ASD stuff because there are so few services for adults in the first place.  Most services that do exist are aimed at children, and dry up when their clients reach 18.  I'm concerned that anything that sounds like it's putting distance between ASD and disability could make it even harder for us to get the services and help we need.

Monday, 12 November 2012

Five questions to ask when choosing a counsellor

I've had an... interesting... run with counsellors over the years.  Before I was diagnosed I sat through a lot of talk that achieved nothing because the underlying cause - Aspergers - wasn't even identified, let alone addressed.  So that you can learn from my experiences, here are some things to bear in mind when you're sussing out a therapist. 

How could you be mad at a face like this?

 

Does this person have experience working with adult Aspies?

This doesn't just go for Aspergers - whatever it is that's driven you to seek counselling, you have a right to know whether the therapist has experience in dealing with it.

Over the first 25 years of my life I saw seven different therapists. I'd never counted them until now. Wow, that's a lot.  None of the seven - who ranged from school chaplains to psychologists in private practice - identified me as having Aspergers. By not addressing that, we were wallpapering over the cracks that belied serious structural issues.

I've had sessions where the whole time's been spent quizzing me on how I see the world, because the apparent novelty of an articulate adult Aspie - and a female, no less - is a learning opportunity for the therapist. I'm all for teaching people about Aspergers and dispelling myths, but not when the meter's running and I'm paying. Therapy sessions should be about working on your stuff, not teaching the therapist.

Does the therapy have a goal, and a plan to meet it?

Related to the 'teaching the therapist' idea, I spent a while with one chap where the individual sessions were interesting, but there didn't seem to be a point.  It wasn't going anywhere.  I wasn't getting better at any of the things that were giving me trouble.

A plan of attack - what you want to achieve and some sort of plan for getting there - is vital.  Even if you change it as you learn more, if you have to ditch one technique and find another, or re-set the goal posts because you've made them too hard to reach or too easy, you need to have a map you both agree on, charting your route and destination.

Does this person have a barrow to push?

More recently there was a counsellor who seemed OK, if without a particularly clear plan, but I had an odd feeling about them. Something just felt a bit off.

Then we had a session where she told me that meditation and yoga were the work of the devil and must be avoided, obviously not realising I'm a part time tealeaf-reading pagan.

This therapist wasn't affiliated with or employed by a church or religious group (as far as I know), just a regular person in private practice.  There was no reason to suspect a sudden close encounter of the religious kind.  But there it was.

I didn't go back.

Does this person treat you like you're broken, defective, or at fault?

One member of the Secret Seven told me it was my own fault I had no friends because I was fat and ugly.

I'm never going to be neurotypical.  It just isn't going to happen.  So therapy that's aimed at making me neurotypical - either in terms of thought processes, or in terms of pretending and passing - is more wallpaper.  I want therapy that helps me be a healthy, happy Aspie, not a sad Aspie who's a good actor.

Can you trust this person?

Another member of the Secret Seven was moving from a practice he shared with various other health-type people to his own office, and told me he'd call me when he was set up and we'd resume sessions.

He never called back.  I later found out he considered himself to have as much work as he wanted, so used the move as an opportune time to shed a few clients by pulling a 'don't call me, I'll call you'.  To make it worse there were other psychologists at the practice he was leaving who could have taken over his case load, but he decided to just leave us hanging instead.

Is a dick like that someone you want to entrust with your innermost secrets?

Sunday, 4 November 2012

Poor balance is a prick(le)

I was just ducking out to bin the bagged-up recycling that's been sitting in the hall for two days.  Because I was going at most twenty paces I didn't bother putting shoes on, and because I didn't need to see where I was going in any great detail I didn't bother with glasses either.

Apparently a horde of invisible ninja prickles have sprung up in my lawn since I last walked barefoot on it, and they leapt out and attacked my helpless, barefoot, barely-able-to-see self.

So I do that awkward 'walk on the bit of your foot that doesn't have a prickle in it' thing out of the invisible ninja prickle patch and then stand on one foot, so I can pull the prickles out of the other one.

Except because my balance is poor to nonexistent, and I'm in the middle of the lawn where there's nothing to lean on, every five seconds I have to put my other foot back down to stop myself falling over.

And that's when I discover I'm not out of the invisible ninja prickle patch after all.

I have to put my foot back down so frequently that I'm actually getting more prickles in it than I can pull out when I raise it.  So it's back to the 'trying to walk on one square inch of foot' thing as I hobble to safety and then pull half of an old growth forest out of the soles of my feet.

And then I realised I'd dropped the bags in the prickle patch.


Somewhere in this picture is an invisible foot-attacking ninja.  I can't see it either.

Tuesday, 23 October 2012

On NT privilege

'Privilege' has popped up a few times lately in some of the very different circles I move in.  On a spirituality-centric forum I hang out on we're discussing it in terms of race and religious beliefs, while in Aspie circles it's being discussed in terms of NT privilege, in light of Tony Attwood's recent hijinks.

There are two important thing to remember when thinking about privilege: 1.  It's not something the individual does, and 2. It's possible to be both privileged and not at the same time, in different ways.

The Cirneco dell'Etna is hunting the cat on the tree #dog #cat #pet #puppy

1.  Take white privilege, for example.  The first time I heard the term, back at Uni when I was young and all sorts of naive, I got very upset.  I wasn't doing anything to suppress or disadvantage people from other backgrounds... I just happened to be white.  That's how I came out of the tin.  And I had all sorts of things going on - from being poor to my then-undiagnosed disability - that meant my life sure didn't feel privileged.

But that's the point.  For people who came out of the tin with this particular colouring, some things in life come easier than they do to those who came out differently. (Ahem).

2.  I benefit from privilege in all sorts of ways - I'm white, cis, straight, a native English speaker in a country where that's the default state, and I 'look normal', more or less.  I'm also disadvantaged in that I have a disability, grew up very poor, and am fat (for reasons which are partially medical).  So I'm both privileged and not.  Rather than argue that the latter outweighs the former, I just think how much harder it would have been if I hadn't had the advantages of being straight, white, and so forth.

So, NT privilege.  These are a few potential scenarios I've come up with, some really specific and some quite broad.  Have any more?  Leave 'em in the comments.

  • I see people of my neurological makeup portrayed accurately and sensitively in the media
  • My neurological makeup is never brought up as a source of problem, conflict or inadequacy
  • I can shop where I please and not expect the conditions in the shop to cause me pain or make me ill
  • I can go to school or work and not expect conditions such as lighting and noise to affect my health or lessen my productivity
  • I can easily find clothes and cosmetics that do not cause me sensory distress
  • Conventional grooming - shaving, styling hair, applying makeup - is able to be done by people with my level of motor skills
  • The way I communicate is understood and respected by others
I'm sure there are plenty more...

UPDATE: for more on this, head over to Because You Aren't Autistic, a tumblog dedicated to highlighting neurotypical (or "allistic") privilege.

Monday, 15 October 2012

Pretending to be normal

Passing doesn't mean you're no longer an Aspie.  It just means you are - at that moment - able to fake normal.

  Playtime, Cats in Human Situation, Playing Jump Rope with a Vintage Victorian Doll

Saturday, 13 October 2012

How Aspergers is like a risotto

In Aspie circles, the word "acceptance" has a lot of baggage.

To some people it means doing nothing, just assuming that how things are now is as good as they're ever going to be.  Giving up.  That's not what it means to me.  

It means making the best of what you have, even if what you have is far from ideal, rather than yearning for what you don't.

Let's use an analogy...

You're hungry.

  Pasta 

You have a pasta craving the like of which has never been seen.  But you've got no pasta in the house, and it's two days before payday and you're skint, so you can't just scoot off to the shops and get some.

But you have rice.

You can resent the rice's presence, cuss it out for not being pasta, and go hungry while you surf the web looking up ways to turn rice into pasta.

Or you could make a risotto.

Risotto is more complicated than pasta and takes more time, care, attention, and stirring.  It's also not what you were expecting when you set off to the kitchen in the first place.  But it's tasty, gives you the same carb-hit as pasta, and it fills your belly.

Similarly, when I first got diagnosed (discovered I only had rice in the cupboard) I scoured all over for cures and treatments and things that'd make me "better" (turn the rice into pasta).  That didn't work, because there isn't such a thing.

But what does work is finding ways to better manage the condition.  I function less well when I'm tired, therefore I accept that I need a lot of sleep and plan my days accordingly, rather than going out late or pulling all-nighters and then cussing at my body for malfunctioning the next day.  Diet makes a difference, managing my physical health and comfort makes a difference, glasses with transitional lenses and foam earplugs and working out a proprioceptive-impairment-friendly way to dismount the back of a ute all make a difference.

My life's still not a carbonara.  It never will be.  But my risotto's not bad at all.


Risotto with speck and goat cheese

Thursday, 11 October 2012

There's more to life than work

I work. Full time. This is usually seen as a sign that I'm terribly high-functioning, but it's come at the expense of all the other areas of my life. Relationships, further education, travel, maintaining good physical health, those things have not just been neglected but been completely killed off and stomped on, because I've had to throw every available scrap of energy and effort into maintaining the full time job.

Tired 

I bought into it one time, but these days I don't have a lot of time for the argument that having a job and earning money means you're a success and you've "overcome" your disability.  Because I only have so much energy to work with, and all of it goes into the job, I'm actually less-well-functioning and further behind in all the other areas of my life than I would be if I worked part time, or from home, or had some some sort of arrangement that left me able to do more than just work.

 But today's society judges people as deserving to exist or not depending on their capacity to turn up at an office and put in eight hours.  If you've got a disability that gets between you and paid employment, you're seen as a parasite, taking up resources but not contributing.

That, gentle reader, is ballocks.

For a start the actual amount of money spent on people with disabilities isn't, per head, really that massive.   Let's crunch some numbers.  (It won't happen often around here, so don't get used to it.)

In 2010-2011, 314,000 Aussies accessed disability support services according to the offical figures.  The total cost was $6.2 billion.  This gives us an average cost per head of $19,745.22.  That's the price of a reasonable secondhand Honda Accord.

But, according to one academic, each of our gold medals at the London games set the Aussie taxpayer back around $17 million.  Rounding the disability figure up to $20,000 for the sake of neatness, you could fund full services for 850 people with one gold medal.

I'm not arguing that we should stop sports funding immediately - rather, that we should spend on our needy with as much willingness and as open a heart as we do people who wear alarming lycra onesies.

The other argument is that you can't define someone's worth by their take-home pay.  The contribution a person makes to their community, their family, their sphere of influence - be it sport, fandom, a hobby, the arts, or a pub trivia team - can't be weighed up against their bank balance.

There are more things on heaven and earth and in the hearts or men than are dreamed of in that philosophy.

Disability figures from here, sport figures from here.

Friday, 28 September 2012

Throwing shapes

I have a theory that issues with proprioception - knowing which bit of your body's where and what it's doing - plays a much bigger role in autism than we give it credit for.

Personally, body awareness is a really big deal for me: I run into door frames and furniture, misjudge steps and ledges, over- and under-reach when picking things up and drop them because I misjudge how firm a grip I'll need to hang onto them. My sense of where my body ends and the way it moves is really quite limited.
Where are my arms???
When I was little, I was only dimly aware that I had a body. Of course I feel hunger and pain and the warmth of sunlight on skin, but it's somehow a background thing rather than something always in my awareness. By way of an analogy, let's say you have an ancestor who was an ANZAC. Every so often you remember and you feel proud - on ANZAC Day and Remembrance Day, maybe when you hear the Last Post or see a military vehicle. But you probably don't walk around all day every day aware of your illustrious ancestor. That's the kind of relationship I have with my physical self.

So, if I'm not properly familiar with how my body feels and the shapes it makes as I go about my day... could that be why my body language sometimes sends off a very different emotion from the one I'm actually feeling? And why I sometimes can't properly pick up or respond to the shapes that others' bodies are making?

I find it really hard to copy the shape and movement of another person's body, say following the teacher in an aerobics class (not that I do such things). But one of the cheats they teach you in Body Language 101 is the importance of mirroring your subject's posture or body language as a show of empathy and means of establishing connection. So if you have a clinical suckage at doing that very thing... maybe that's where some of the 'autistic people have no empathy' thing comes from.

There are things the proprioceptorially disadvantaged can to do improve body awareness, albeit temporarily. Deep pressure - like lying under a really heavy featherbed - helps me, and I've heard talk of weighted vests that achieve the same effect but in a more portable form. There are exercises that stimulate vestibular feedback, mostly things that involve pressure on the joints. One quick and easy one is to press one hand against the wall at about shoulder height, arm straight, and lean in so your body weight presses against your wrist, elbow and shoulder joints. Try it. The arm that's done the exercise feels different to the one that hasn't for a while afterwards, and that 'different' feeling means I'm more aware of it. Clothing choices also help; tights and stockings keep me more aware of my legs than loose trousers of jeans do.!

A lot of autism therapy and interventionney things focus on social skills. But I wonder if working on improving body awareness might not give the social stuff a better chance of success. If nothing else, it'll reduce wear and tear on the door frames.

Saturday, 22 September 2012

The Fauxspergers Epidemic

Faking Aspergers as an excuse for bad behaviour is as honourable as faking a bad back to get out of physical work, but they both happen.

This isn't about genuine self-diagnosed people.  There are reasons why many Aspies, mostly adults, are undiagnosed.  My own diagnosis was a succession of happy accidents, without which I'd probably still have an official diagnosis of "probably depression, or BPD, or OCD, or maybe some other shit, maybe you'd feel better if you lost weight?"

This is about people who claim to have Aspergers purely based on having social problems.  Back when I used to hang out on a lot of big autism-focussed online forums, I saw a lot of these people pass through.  They were usually young males who considered themselves of above-average intelligence, but who had interpersonal issues.  Obviously this was because they had Aspergers, and those useless NT sheeple just didn't appreciate their genius.

But their special interests were almost exclusively "computer games", "boobies", and "your mum", and if the conversation turned to things you have to actually be autistic to understand - sensory issues, motor skills or executive function, for instance - they suddenly had nothing to say.  They'd usually been banned by then anyway, for trolling and picking fights.  Maybe their social problems had less to to with Aspergers and more to do with being unlovely little brats.

Then I found a rather problematic question on Quora:

I don't have Asperger's, but I consider smalltalk and much of the associated politeness rituals to be a painful waste of time. Would it be better for everyone involved if I start telling people I'm an Aspie?

What possible drawbacks could there be to pretending to have a lifelong developmental disorder just to get out of a conversation?  How could there be an ethical consideration in treating someone else's life and disability like a cheap fancy dress costume for your own temporary convenience? How could claiming to have Aspergers while acting like a jerk possibly make life harder for actual people with Aspergers?

Tuesday, 18 September 2012

Intelligent design

I've been reading up on universal design lately.  That's the practice of creating spaces - be they homes, workplaces, or public spaces - that are accessible to everyone, regardless of their level of mobility and ability.

It all started the first time I saw oversized light switches, designed to be usable if you have arthritis or limited motor control of your hands.  In the last few years they've gone from being a thing you looked at twice when visiting someone in a nursing home to something commonplace the last cheap country motel I stayed in had them.  And why not?  They're aesthetically no different from any other light switch (I actually think they're a more logical design, making better use of all the available space) and they're easier to use.  This isn't just a boon for those with disability: it also means if you've got an armful of stuff or your hands are covered in paint or dirt, you can turn the lights on with your elbow.

Accessible interior design also rated a mention on Apartment Therapy.  I love how they've described the concept: "Universal design doesn't so much refer to adding a bunch of wheelchair ramps to existing structures. It touches on the idea of designing spaces that have wide accessibility built right in - unseen and seamless with the beautiful design elements."

They featured a photo of this, or something very like it: a kitchen tap that turns on and off by touch, rather than a screw or twist action.  Apparently the accessibility test is that an able-handed person should be able to operate it with their hand in a closed fist.  That thing on the right, by the way, that looks like some sort of metallic kiwifruit ray gun, is a 'side sprayer' which is apparently for rinsing things and filling up jugs with minimal splashage.  I think in my hands it'd be for randomly shooting water all over the kitchen, though.

I personally have a detachable bathroom grab-rail, which I bought back when I lived in a house with an alarmingly high step up into the shower.  The only reason I don't use it at the moment is I'm in a less-than-brand-new rental, and there's so much paint peeling off the bathroom walls I can't get the suction cups to stick.

But a lot of talk about universal design does tend to lean heavily towards the obvious physical disabilities.  So, here are some tips of my own for universal design, mostly in regards to shops and public spaces, from an Aspie perspective:

Kill the 'mood' or 'background' music.  You might think it adds to the ambience, but I can't count how many shops I've walked out of with my wallet firmly closed because the music was making my ears bleed.  Office Works is a particularly bad offender because they have different music playing in different parts of the store. (Why?  Really specific APRA licencing?  Do people browsing laptops need different stimulation from those buying envelopes?)  If I'm in an aisle where I can hear two speakers playing two different songs, hello sensory overload, and goodbye customer.

It's not just wheelchair users who need extra space.  Because my body awareness is shady, I don't always know exactly where my limbs are and it's pretty easy for me to collide with things.  So if the shop is absolutely jam packed with stuff, with narrow, winding passageways that you have to walk through sideways (new age stores seem to be particularly prone to this, I've noticed) I'm going to feel really uncomfortable and probably bail as fast as I can.  There's also a fair likelihood I'll knock something over - either a book, a whole rack of clothes, or another customer.

Speaking of jam packed shops, having too much visual clutter bewilders me.  I'm a bit like a vampire stuck counting grains of rice - I get 'stuck' trying to process everything I'm seeing and get to a point where I just can't make sense of it.

If there's a certain path through the space that users are supposed to take (like the famous Ikea 'maze') make that path clear.  There's nothing wrong with a 'start here' or 'no entry' sign to make it explicit.  Because I can't necessarily take cues from other people as quickly as would be ideal, and I do sometimes miss implicit direction, what may be clear to you may be completely invisible to me.  So, stop with the death glares because I'm walking the 'wrong' way through your shop, and just put up a sodding sign already.

Quiet spaces are an awesome idea.  I really wish shopping centres had the occasional shop that was just left an empty space with darkish neutral walls and gentle lighting, some comfy chairs, no music, and maybe a plant or two and some magazines.  The only time I've seen spaces like this is when there's a shop they can't rent, so they stick some chairs in the harsh, brightly lit space with its undercoat-white walls, which isn't at all conducive to settling the mind.  They're also usually full of teenagers talking really loudly, but that's not the kids' fault - there's nowhere else for them to go, either.  It'd also be great to see spaces like this every so often at large flea market type affairs - I'm thinking the Byron Bay and Eumundi markets - so you could stop and have a defrag in an empty stall space if you're getting overwhelmed.  While there are tables and chairs and things, they're usually full of people eating (because that's what tables and chairs are for) and also sometimes quite a distance from the market itself, which means you have to navigate out of the stalls and find a seat while in the beginnings of a meltdown.  Erk.

Handrails are awesome for balance issues, but keep them clean.  Toowoomba has the most disgusting handrails I've ever seen.  The ones outside the big shopping centre in the middle of the CBD were covered in used chewing gum and other unidentifiable but possibly biological material, and the ones on the building I worked in were covered in sharp, flaking paint and rust.  Obviously they were just there for the sake of disability lip service, and nobody had considered actually using them.

Photo credits and where-can-I-get-it info:
Oversized light switch from Independent Living Centre NSW which has a massive list of stuff to make life easier.
Touch-operated tap with side sprayer from Delta Faucet.  No, it's not cheap.

Saturday, 15 September 2012

People like me

One of the things about belonging to a minority - any minority - is that you tend not to see people like you, people you can identify with, in mainstream pop culture.

La mejor calidad de imagen 
When I was growing up there were no Aspie characters, or otherwise neurodiverse characters, on the TV shows I watched.  In fact, I can only recall ever seeing one disabled character of any sort: the girl from Degrassi Junior High who used a wheelchair.  Two if you count Harpo Marx's professional non-verbalness, which is kind of a stretch.

I also didn't know any other Aspies in real life.  So there wasn't really anyone I could look up to who was like me. Whose mind worked the way mine did, who stimmed like I did, who had problems with the things I had problems with, who understood.

So, without any people like me in my small sphere of childhood consciousness, I turned to strange places for role models.  Harpo, for instance.

Even these days I tend to identify with unexpected people.  While other women I know look up to Leigh Sales, Ronni Anconda or Kate Miller-Heidke, I'm kind of aspiring to be James May.

James May - férfi a háznál

Wednesday, 12 September 2012

How you end up friends with people you don't like

When you've got no friends and your're lonely, your standards tend to drop.  And if you've been ostracised and socially rejected time and time again yourself, you tend to be reticent to do it to others.  Even if they're a complete creeper, or their politics clash badly with yours, or they're emitting rays of body odour so strong they're visible to the naked eye, or they're selling something.  You're too kind to pull away, and you're so desperate for some human contact you're prepared to swallow your principles, block your nose, buy their Avon, and put up with them.

So, that's how you end up "friends" with someone you don't don't even like.

  Dog and cat, Hanson, Mass. 

This cannot end well.

There are the obvious risks. Sure, some people who come off as creepers are just nice, misunderstood souls.  But some are actual creepers  And, as Aspies, we're less likely than most to be able to tell when someone is genuinely dangerous and we need to get out immediately.

Then there are the less immediate but just as dangerous potential outcomes.  Being scammed out of money, time or services by someone with no intention of paying them back.  Being stuck in conversations or situations you have no interest in and maybe even find distressing.  And, of course, the inevitable let-down when the 'friend' shows their true colours.

There's another risk, too, more subtle yet able to do a lot of long-term damage to our ability to make other friends with actual nice people we like.  Unsurprisingly, you become associated with your associates.  So if you hang out with a bunch of creepers, shysters, bigots or smelly folk, people are going to assume that you're either like that yourself, or you're OK with it.  So even if you're a genuine, kind-hearted, non-smelly person, your personal brand is going to take a hit.

The whole 'better alone than in bad company' thing is on my mind at the moment, because I am in the midst of a conscious, planned campaign to make friends.  To that end, I've started going to a couple of local club-and-society type things, which will remain unidentified to protect the innocent.

The first time I went to one in particular, it was great.  The people seemed friendly, the atmosphere seemed relaxed and accepting, and I felt if not at home at least not explicitly on the outer.  This week, though, things were different.  There was a different mix of people, and that made the mood of the group very different.  Things were more cliquey.  There was a lot of talk of politics in the tea break.  And it seemed we were graced with presence of the resident 'let me show you how awesome I am' guy.  I ended up talking to nobody, spending the break reading the most boring noticeboard in the southern hemisphere and bolting as soon as it was over.  

Any number of things might have happened.  I might have got lucky the first time, or unlucky the second.  I might have been having an 'off' night which coloured my perception.  I might have inadvertently sat near some people who had their own issues going on and weren't up for talking to new people, and had I been four seats over it would have been altogether different.  There's been a lot on in politics this week, so it's understandable things came up which usually wouldn't.

So, I'll give them a few more goes before I make up my mind.  But I no longer feel obliged to hang around if it's not for me.  For one, I've got other groups on the go so it's not the end of my social circle if I pull out of one.  And two... sometimes you really are better off with your own company.

Tuesday, 11 September 2012

Creating an Aspie-friendly habitat

I live alone.  This does sometimes get lonely and it means I'm the only one here to do the dishes and attend to the kitty litter, but there are also a lot of advantages for the solo-living Aspie.

For a start, it means I can stim and pace as I please, watch My Little Pony or listen to the same song over and over again without disturbing anyone else.  It also means I'm guaranteed peace, quiet and solitude when I need it.

Solitude

Here is a very interesting article about "autistifying" one's home - a magnificent word and a fantastic concept, both of which I plan to adopt.  I particularly approve of the 'if I can't see it, I won't remember it' school of checklists and reminders stuck on walls in unmissable places.  It's something I use, too, and have done ever since my high school physics teacher recommended we stick up our formulae list beside the bathroom mirror and memorise one every night as part of our revision.  I barely scraped by in that class, with a final mark in the mid-forties, so the value of sticking things to walls is possibly the only concept Mrs Smith managed to get into my non-mathematically-inclined head.

I'm particularly fond of refrigerators, because not only are they large and oft-looked-at objects, but their shiny white surfaces also work very well with whiteboard markers.  Over the years I've used my fridge to plan the renovations of my first home, record shopping lists, keep frequently-used phone numbers at hand in the days before our phones remembered them for us, and these days I keep a colour-coded checklist of household chores.  They're broken up by how often they should be done - green, at the top of the list, is daily things like washing up, litter tray cleaning, and putting dirty clothes in the laundry hamper.  From there it works its way through vacuuming and sheet-changing to 'whenever' stuff like window cleaning and picture rail dusting.  (This being a rental, that's likely to get done exactly once - by the cleaners at the end of the lease.)

I use it at work, too - I have all sorts of checklists and things that go 'ping' to remind me to do stuff.  It might seem overkill, but I need all the help I can get.  And if that help's free and easy in the form of a whiteboard marker or a Google Chrome app - why not take advantage of it?

Sunday, 9 September 2012

iAccessible

Calendar.  Diary.  Reminder service.  Maps.  Notebook.  Camera.

These are all things that come in handy every day if you're an Aspie trying to get stuff done.  Calendars and diaries to keep track of where you're supposed to be and what you're supposed to be doing in the face of executive dysfunction, and reminders to keep you on track.  Maps so you can find your way around if your sense of direction or internal map is unreliable.  A notebook for jotting down extra things that need remembering which crop up through the day.  A camera for taking a photo if you haven't got time or a pen for a written note - a photo of a flier on the noticeboard to remind you of an upcoming event, of your breakfast cereal box so you remember what sort to get when you go shopping, of your car's licence plate because you can never remember it when you're filling out forms.

But that's a lot of stuff to carry.

Fortunately, you can get the lot in one handy device.  You can even make phone calls with it.

people using iphones
Hello?
Smartphones and tablets have great potential as pieces of adaptive technology - they come with various useful applications already installed, and the range of other apps you can download is staggering.  Here's the story of how they're helping some Autistic folk in the workplace.

What they also have going for them is that they're discreet and ubiquitous - many people have touchey swipey phones, so a person using one doesn't stick out.  This is a big deal, because a lot of adaptive technology (devices designed to help make life easier for people with disability) is kind of conspicuous, and does mark you as an outsider.

Being able to use a common, everyday and (relatively) cheap item as a specialist disability assistance device?

Priceless.

Sunday, 5 August 2012

The opposite of passing

I'm not talking about passing a test or a tricky overtaking maneuver - I mean passing for normal.

It's a term I first heard used by some trans* folk of my acquaintance, to whom "passing" means literally being able to pass as a male or female. Since then it's cropped up in disability circles in a similar way; passing for normal, hiding your non-normal ways and appearing to be a non-disabled, neurotypical member of society.

maksed woman
Pictured: normal
Of course, this has a lot of benefits in a society where being Other is still a recipe for all sorts of problems from being looked at funny to outright violence.  I totally understand why a lot of Aspies who can pass, do so.

But I often can't, or don't, or a little of both.

I suppose in one way I'm a master of passing, since I sailed through life undiagnosed for a quarter of a century.  But those were very hard times.  I was often lonely, confused, hurting and frightened, and I'd reached the point where I couldn't pass any more.  The pressure of passing, the exhaustion of trying so hard day in day out to be normal, had worn me down to the point that my life was coming apart at the seams, crumbling into the sort of ruin you'd expect of a building erected on a foundation of shifting, sliding, treacherous sand.

I'm very 'out' about having Aspergers.  I bring it up in job interviews, when meeting new colleagues, when joining groups or turning up for an exercise class... Not in a special snowflake way, but because I think  it's best to get the disclosure out of the way as soon as possible.  That way, it's on the table before people make their own negative assumptions about my eye contact/clothing choices/stimming/bluntness.

The other reason I'm very open is that I refuse to force myself to act normal.  I've tried, and that way madness lies in quite a literal sense.  I refuse to torture myself by suppressing stimming, forcing eye contact, struggling through sensory hostile environments, and attempting things I cannot do due to the buffet of odd physical problems that come with the Aspie territory.  These things wouldn't improve my lot in life any, the only benefit would be to the neurotypical people around me - by pretending to be normal, I save someone else the discomfort of having to deal with and make allowances for someone different.  Someone Other.

But we are all someone's Other.  There's someone out there who hates your skin colour, your religion, your genitals, your choice of sporting team and your decision about whether to eat meat.  But that's their problem.  You can't live your life in a way that makes other people happy, because there are too many people with too many agendas, and in doing so you're handing all your power, your choice, your self, over to them.

These days I'm keeping my power, my self-determination, my who-I-am.

And that's the opposite of passing.

In passing: a note on the use of "trans*"

Thursday, 2 August 2012

On Things

My My Little Pony

When I was young
I had a blue My Little Pony
I really wanted a pink one
but I loved her anyway

When I was young
I had a rag doll called Jemima
I loved her like a sister
took her everywhere

When I was young
I didn't have any friends
But it didn't really matter
I had my things

When I was older
I moved out of home
and left my beloved things
In a box under the bed

The box was shifted
forgotten
ignored
tripped over
dragged out
ignited
ashes
gone.

Now I am older
I have some friends, but not many
but I try not to fill the gaps
with my things.

Wednesday, 1 August 2012

Perfectionism = Procrastination

Dirty dishes in the kitchen
grotty teabags in the sink
a pile of unread papers
and I just don't want to think.

There's dust on my guitar
and my novel is unwritten
and I need to do some sewing
but these thoughts swim up unbidden.

I'm so sick of being useless,
Always struggling, always late
never up to standard
feeling like I've blown my fate

Like I could have been so awesome
That potential's unrealised
because the pressure to be perfect
has left me paralysed

I'd rather just do nothing
than try, and get it wrong
it's why I never worked with oils,
wrote a book, composed a song.

If another person wrote this
I'd tell them let it be,
Just have fun and do not worry....
but it's different when it's me.

Tuesday, 31 July 2012

Interaction badges: a good idea all round

Over on The Thinking Person's Guide to Autism, there's a very interesting post about  interaction badges.

This is basically a means of coding the 'please engage/avoid me' message which is usually relayed through a complicated dance of body language and neurotypical telepathy.  There are three badges - red, yellow and green - with meanings vaguely related to the symbolism we're used to associating with those colours through traffic lights.

Bokeh your dayRed means 'do not initiate interaction with me'.  That doesn't mean 'ignore me if I talk to you', but it's a sign not to barge on up and start yapping.  If the world at large understood interaction badges, I'd put one of these on when I'm clothes shopping.  It's a situation where I feel weird and awkward and self-conscious - plus usually a bit overstimulated from the instore radio and all the other people - and being left alone to do my thing would be best for all concerned.

Gold BokehYellow, in autistic circles, means 'only interact with me if I already know you'.  I personally wouldn't have a lot of use for this one, but if it's specifically strangers that send you running to hide in the bathroom, this could be a hit.  Actually, I'd like one that says 'I know you know me, but I'm not up for a chat right now, ktxbai' to wear while grocery shopping.  But I guess that's what the red one's for.

Green BokehGreen is the one I'd wear the most, if these were a thing in the wider world.  It means 'I'd like to interact, but have trouble.  Please talk to me!'  This is kind of the story of my life - most times I would have loved to have had a friend, an acquaintance, a playmate, but because I come across as 'wrong' or 'off', it just doesn't happen.

I actually think interaction badges have a practical application much further afield than the autistic community.  Jenny Lawson, AKA The Bloggess, has written about her anxiety disorder, and how it tends to leave her trapped in bathrooms at social shindigs.  And how many times have we - the general we, as in everybody ever - been told 'don't be shy.. the person you're talking to is just as nervous as you are!'?  Well, now we can tell, empirically, if that is the case.

Or if they want us to sod off.

Monday, 30 July 2012

I was in a relationship once. It didn't last. Thank heavens.


I was just a kid of seventeen
and you were thirty-two, dear

I thought I knew what life had planned
and so, I'm sure, did you, dear

Change comes quickly when you're young
when all the world is new, dear

You've no idea how hard I tried
to come back home to you, dear

This was my one chance I craved
surely that you knew, dear

I could not stop to be your wife
I needed more than you, dear

A dozen years of joy and tears,
yet I remember you, dear.

Thursday, 19 July 2012

From echolalia to your own words

Echolalia - repeating things you've heard without necessarily understanding them - is one of the many odd neurological quirks that can come with Aspergers, particularly in kids.

I was never noticed to do this as a kid, but looking back I think I did, just in a fairly subtle way.  Rather than immediately repeating back what I'd heard, I'd hang onto it and use it later in circumstances where it seemed to fit.  Often, it wasn't things I'd heard in real life so much as words, phrases or whole sentences from my special interests.

Sometimes it worked, and sometimes it didn't.  I've always had a weird mix of special interests that don't necessarily reflect the culture around me at the time.  For instance, when I was what these days would be called a tween, my key special interests were the Marx Brothers and Rocky and Bullwinkle.  But, realistically, how many useful phrases can a 90s adolescent glean from 1930s comedy films and a cartoon from the 1960s? 

I wonder if I'd lucked into more age-appropriate interests - say I discovered Triple J earlier and got into music just in time for Tori Amos and Alanis Morissette - how that would have affected my communication, and the way I came across to the rest of the world?

As I got older and got my head more around how the world worked, I moved from my library of stock phrases (which I still use when I have to) to proper autonomous self-expression.

This wasn't usually a conscious strategy, but it's something I recognise now when I look back at my actions and responses.

I won't say I understand the world completely - because can anybody? - but these days I hope I have a reasonably good handle on the world around me and my part in it, and I'm usually able to interact with that world in my own terms.  But I only coped long enough to get where I am thanks to borrowing responses from Groucho when I was younger.

Tuesday, 10 July 2012

On the semantics of personhood

Twice this week, I've seen someone online get angry at the use of the phrase "non-disabled" to describe a person who doesn't have a disability.   Twice I've seen people argue that the general term "people" should be used to describe the non-disabled, which in an actual sentence would look like this:

"Both people with disabilities and people can benefit from closed captioning."

I have two problems with this, and the first is that it looks and sounds bloody silly.  It's like saying "both black cats and cats enjoy fish for dinner."  It's just nonsense.

The second, though, is about the assumptions and mindset behind such reasoning.  If "people" is somehow different from "people with disability", then the underlying assumption is that people with disabilities aren't really people.

This isn't a new idea.  Disabled people have spent lifetimes being shut away in institutions not because it was in our best interests but because it was convenient - it was easier than making the community more accessible and taking everyone's needs into account, and it saved the Real People the discomfort of having to look at and interact with someone who was Not Like Them.

The fact that a young woman in a first world country is told repeatedly she's remarkable and inspirational as she goes about her everyday life because she uses a wheelchair suggests that we're really not that far from the mindset that people whose bodies or brains work differently somehow don't, can't, and shouldn't be out and about doing normal people stuff. That we're not really people.

FACELESS

We're cute when we pretend to be people, like dogs wearing sunglasses.  But when we start demanding access to Real People jobs, Real People facilities, and even the Real People Olympics, suddenly the dog's taken off its sunnies and is registering to vote and the cute's got all uncomfortable and weird.

I can't help but wonder how a non-disabled person who objects to being described as non-disabled would cope with being called a spaz, retard, nong, freak, fuck up, or any of the various other charming epithets I've had thrown at me over the years.

"Non-disabled" is a precise term, a phrase used to impart a particular meaning when differentiation between populations with and without disability is necessary.  To suggest it's an insult isn't just drawing a long bow, it's an insult in itself to those of us who have had genuine slurs thrown at us.

And for the record, you could get around the whole thing by saying:

"People with and without disability could benefit from just calming the fuck down."

Thursday, 28 June 2012

I'm not a unicorn

Aspie chicks are considered a rarity in many circles.

unicorn illustration
S'up?
I've been browsing The Thinking Person's Guide to Autism lately, and came across this post,written by woman with Aspergers about the opportunity to meet and work with other women like herself - aka "unicorns".

I personally believe it's not entirely about males being more likely to be on the spectrum. I think the apparent scarcity is also a reflection of the difficulty many women face getting an accurate diagnosis, and the lack of assistance available to us.

Autism affects males and females differently, yet historically a lot of the research has concentrated on male subjects, so things considered to be stereotypical autistic traits may really be specific to the male autism experience. So females, with our different ways of being autistic, often fly under the radar.

The usual thinking is that there are four autistic males for every one female, but I think key point is that there are four males diagnosed for every one female.  Considering that we're still diagnosing people in their 30s, 40s, 50s and beyond who missed out when they were younger because we just didn't know about the condition, we should realise that the diagnosis rate doesn't necessarily reflect the incidence rate.

Sunday, 1 April 2012

Haters be hatin'

Aspies hating on non-Aspies really harsh my mellow.

Battlefield?  Nay, I have been on the Tumblr
I recently left a Facebook group - one of many autism-related ones which have started up in the last year or so -where one member's anti-cure post triggered a massive all-in rant.  "NTs are sheep!" "Aspies are the next step in evolution!" "Master race!" "NTs are out to get us!" "Any autistic person who considers a cure is a traitor to the cause!"

Oh, for fuck's sake.

Anti-NT ranting will do the neurodiversity movement more harm than good. It makes us look bitey, hatey, scary, with massive chips on our shoulders and kind of out of touch with reality. Arguing that Aspergers is all awesome, all the time, is to willfully ignore the Aspies who are genuinely struggling and deserve help. We can't demand respect and acceptance if we can't respect and accept the differences in our own ranks.

It's also disrespectful to the many non-autistic people - parents, siblings, friends, partners - who know, love and care for people on the spectrum. When you say "All NTs" do this or think that, you're talking about those people as well.

We need bridges, not walls.  If we want people to learn, we have to let them ask questions.  We have to be prepared to explain things.  And if we're scary and unapproachable and lashing out, that's not going to happen.