Monday, 25 November 2013

Monday Muster

Happy Monday, dear ones, and happy anniversary:

Doctor Who 50th Celebration - Matt Smith's sonic screwdriver
Photo by Paul Hudson

(I'm writing this on Saturday night, a few hours before The Day of the Doctor is broadcast, so consider yourself lucky that you'll miss my inevitable fangirling and dissection.)

Apologies before we begin for the length of this week's muster.  I've finally cleared out the folder marked "stuff", so there's quite a bit of stuff in this edition!

Are you of an artistic persuasion?  Here are 12 marketing tips for artists, from The Art of Autism.  They've been written specifically for artists on the spectrum, and could be particularly handy since promoting our work and 'selling ourselves' is a challenge for many of us.

Our man in the Philippines, Gerard Joseph Atienza of Autistic BigBro, attended the Philippine National Autism Conference late last month.  It sounds like a really interesting event, with everything on the table from research to social inclusion to how the media portrays people on the spectrum.  Gerard and a crew of other autistic adults also held a panel to discuss their own lives and journeys:

"It was such an exhilarating experience to be part of this conference, and together with fellow autistic guys, whom I shall call Team Awesomeness, there is hope for autism. And it doesn’t stop at the conference. Hope begins here, and hope begins now."

I don't know why the concept of the selfie seems to be all over the media at the moment, but here's one that's actually worth talking about.  Elsa S. Henry from Feminist Sonar is blind, and posted a selfie recently which shows the eye that's caused her shame and bullying in the past.  The act of posting it was a statement to show that she refuses to be shamed or bullied any more:

"...My selfie is not a cry for help.  My selfie is a fucking battle cry.  My selfie says that I am no longer ashamed."

I haven't blogged about the recent controversy surrounding Autism Speaks, but if you move in autism circles you may already be familiar with it.  The US charity put out a statement which used such negative language to describe autistic people - as burdens, as missing, as destroyers of our families and as not really alive - that all hell broke loose.  Autistic people from all edges of the spectrum commented on the AS site and on their own blogs, the This Is Autism flash blog was organised, AS's only autistic board member resigned, and a physical protest took place at the event the original statement was released to launch.  I missed most of this thanks to the chest infection which took me out for most of last week, but there's a good round up of links that will explain everything here.  Just Functioning also has a lovely post explaining why many autistic people were offended by the original statement.

Remember James, the young British man mentioned in a recent muster, who's been getting an endless stream of letters demanding he prove he's not able to work, despite him being blind and having autism, epilepsy, and learning and cognitive disabilities?  The government's conceded at last that he can't, and he'll get financial assistance indefinitely.  It's just a pity he and his father had to literally turn up on the Prime Minister's doorstep before that happened.

There are some museums and art galleries in the US doing interesting things to make their collections accessible to patrons with disabilities.  New York's Metropolitan Museum of Art has sign language tours for the Deaf and hands-on sessions for people with vision impairment, while the Smithsonian lets people with autism and cognitive disabilities come through before the usual opening hours, when things are quiet. You can find out more in the New York Times.

How do you handle procrastination?  I have major trouble with it - usually because the thing I'm putting off involves social contact that I just don't feel up to, or because I'm so scared of failure that just not finishing the thing looks like a good alternative.  Writer and designer Kelly Exeter's found an approach that works for her: whatever the thing is you dread, get it done first thing, and then it's over with and you don't have to spend the rest of the day dreading it.  It's based on some advice from Mark Twain:

"If the first thing you do each morning is eat a live frog, you can go through the day with the satisfaction of knowing that that is probably the worse things that is going to happen to you all day long."

Autisticook has been looking at procrastination and executive functioning lately too, and has had a breakthrough.  Congratulations!

Being introverted in a world where that's seen as a character flaw can suck.  It's not something that just affects people on the spectrum; plenty of neurotypical people just happen to be introverted and not fond of massive, loud, chaotic gatherings.  It's something Regina Lord of Creative Kismet encounters every few years:

"It happens every couple of years. Someone, a new or close friend or regular acquaintance  decides that there is something wrong with me, I need to change or that it is their job to fix me, all because I would much rather stay home....

"...The feeling that your friends don’t get you at all, or refuse to get you, is a really crummy feeling."

Unrelated to anything, but I just rediscovered Geoguessr and am a bit addicted.  My best score so far was about 14,000 - I got lucky there, the set had two Aussie locations which I could pin down to within a few kilometres.

Monday, 18 November 2013

A seat at the table

"To have a seat at the table" means to have your opinions heard and respected in a debate or discussion.  But it may be an unfortunate turn of phrase, because it brings to mind an actual physical table.  Tables can only have so much perimeter, due to the laws of physics and interior design, so there's only ever room for a finite, limited number of people to sit around them.

especially when the first ones in spread out and cover the whole damn surface with jigsaw pieces
This creates a fallacy of scarcity; that there are only so many chairs to go around, and if someone else gets one, there may not be one left for you.  It's a classic divide and conquer move, because it sets all the stakeholders at each others' throats fighting over imaginary chairs, playing games of My Lived Experience Trumps Your Lived Experience, to the extent that we all forget about the common enemy we'd actually gathered around the table to discuss.

This, I think, happens sometimes in the autism community - by which I mean not just autistic people, but families of autistic people, therapists, teachers, and whoever else has a horse in the race.

Parents with a severely autistic infant and a complete absence of useful services see an independent, successful autistic 40 year old speaking eloquently about their life, and are heartbroken that this person might get a seat at the table while their own cries for a future for their child go unheard.

Autistic adults living with homelessness, unemployment, abuse, and a complete absence of useful services see non-autistic parents complaining about getting funny looks in the supermarket and are heartbroken to think that gets attention at the expense of their own utter despair.

In that situation, all to often the discussion degenerates into one side or both trying to discredit the other. And in between all the shouting and flinging of insults, the "you're not like my child!" and the tears and exhaustion and frustration on both sides, the actual point takes up its hat and cane and strolls out the door never to be seen again.

Rather than focusing on the differences between us, we should be looking at the similarities.  Go back and re-read those two apparently opposing points of view.  What are the common themes in both?

A complete absence of useful services is one.  Heartbreak is another.

When we realise what we have in common, perhaps we will stop fighting.  When we realise that what helps today's autistic children will help tomorrow's autistic adults, and what helps today's autistic adults will help the adults today's children will grow into, maybe we'll be ready to start actually building that help.

But first, let's build a small bonfire and burn this idea that there's only room in the discussion for one way to do autism, for one kind of autistic person, and for a select few voices to be heard.  Let's set ablaze this idea that others struggles and lived experiences matter less than our own, and reduce it to ashes to be blown away in the winds of change.

Let's build that bonfire out of the imaginary table.  So we never again fight for imaginary seats around it.

Monday, 11 November 2013

Monday Muster

Hope your Monday is treating you well, dear ones.

I highly recommend you bring an end to what you're feeling inside. (200)
Photo by Meg Wills
 Temple Grandin says more work needs to be done to understand the sensory aspects of autism.  The article makes a point of mentioning "even clothing materials" can trigger sensory trouble, as if that's surprising.  It's an interesting reminder of just how little most people understand autism, since clothing is one of the most common and obvious sensory troublemakers.

Britain's not a great place to be if you're disabled at the moment, with the government's Fit to Work scheme asking people who patently can't work to bend over backwards to prove their unemployable status.  Take James, who's 19 and has autism, epilepsy, vision impairment and severe learning disabilities.  His family's received a string of letters - they got three in four days at one point, which sounds not unlike my own history with Centrelink - threatening to cut his benefits unless they could prove James couldn't work.  So, they turned up on the Prime Minister's doorstep and said "right, if you think he can work, give him a job."

Want to go viral?  Here are some practical tips, from what to name your masterpiece to where to post it, from Karen X Cheng, whose video Girl learns to dance in a year has had, at time of writing, three and a half million views.  That's not quite Psy territory, but it's a damn sight better than the 15 I once had on a Dangermouse fan vid on a Youtube account I've since lost the password for.

Take this with as many grains of salt as you need, but ape shows signs of autism. (From 2011, but I just found it.)

Looking for Christmas gifts?  You can fill your stockings and support autistic artists, designers and craftspeople with the Parenting Autistic Children with Love and Acceptance Holiday Shopping Guide.  There are all sorts of goodies listed, from books by autistic authors to clothing, art, photography, leatherwork, jewellery and homewares.

In some pockets of the autism community, it's unfortunately A Thing to take photos or videos of children in meltdown, self harming or otherwise in distress, and put them online to show The True Horror Of Autism.  This is never OK.  But apparently the same thing also happens in other parents-of-kids-with-disabilities communities.  Kara Ayers has Osteogenesis Imperfecta, the affects of which include brittle bones and frequent fractures.  She's noticed a disturbing fad for parents to snap a picture of the freshly fractured child - before tending to their injuries:

"...One of these pictures was particularly disturbing. The child was in obvious agony, crying, and her leg was completely unsupported.

"As someone who has experienced this type of fracture, the image triggered memories of actual pain that I could feel in my body. The moments before a broken bone is splinted or at least supported by something are saturated by a level of pain that’s difficult to describe and impossible to just imagine. Even if a photograph required a couple of seconds to snap, that’s two seconds longer than the child needed to suffer for the sake of an image.

"Pictures like these are not isolated to the OI community. Friends with other disabilities share stories of graphic post-op pictures of children wearing little clothing and crying. Close-ups of feeding tubes on the chests of tween girls and videos of children resisting physical therapy are being posted by parents on a relatively frequent basis. The disability community at large must ask the question: What do parents of these images seek to gain?"

What indeed.

Friday, 8 November 2013

You don't know what you don't know

Sometimes, you don't know what you don't know.  And in when that's the case, it's really hard to find any useful information.

Take, for instance, my long slow process of figuring out what my body's telling me.  It took me a long time - into my 30s - to work out the difference between the sensation of hunger and that of anxiety.  (I still get the two mixed up, and suspect I always will.)  One of the reasons it took me so long to get my head around this was that for much of my life I've been unaware that the way my body experiences both physical sensations and emotions is different from other people.  Only once I knew that was I in a position to start trying to work out what individual sensations meant, or separating similar-but-different sensations like hunger and anxiety which I'd previously thought were one thing.

But what if you don't know that your body is different from other people's?  How would you even begin to work that out?  Before I started properly getting my head around this Aspergers business and listening to other people on the spectrum, I'd never heard the remotest suggestion that everybody's senses weren't identical.  The discovery that sensory dysregulation is a thing which exists was a massive key for me, which unlocked all sorts of self discovery.  I would never have stumbled across that key if left to my own devices, no matter how long I spent scouring the internet or contemplating my navel.  Because I just didn't have enough information to work with.

Another more basic example is the concept of Aspergers itself.  My own diagnosis involved a great deal of luck and co-incidence, and I probably never would have worked it out myself.  A lot of people do make meaningful self-diagnoses, but I doubt I'd have ever made that connection.  I had a very 1980s Readers Digest idea of what autism was, all tragedy and horror and small boys, and would never have realised there could be a me-shaped space on the spectrum.

That's one reason why it's important that lots of Autistic voices are heard, from all sorts of very different Autistic people from all over the spectrum.  The countless unknowingly Autistic people who are still out there, wondering what's wrong with them and why they're so utterly, utterly alone in the world, deserve to know they're not wrong and they're not alone.  They deserve to know there's a reason they are the way they are, and a global community of others like them.

They deserve a key.

Wednesday, 6 November 2013

Spirituality and Aspergers

Aspergers and religion have an odd relationship.

There's a common misconception that all Aspies are atheists, either because we don't understand religion or because we're too logical, science-brained and Spock-like to have any time for such things.  It doesn't help that the obnoxious end of the atheist movement - the ones who aren't content to just make their own decisions about their beliefs, but then feel the need to harass and mock people who choose differently - does include some Aspies in its ranks.  But that's not because Aspergers and atheism are a match made in, well, heaven.

In my experience, whatever Aspies believe, they tend to be really staunch believers.  I don't think it's a co-incidence that some of the most religious people I've ever met, and the hardest hardcore atheists, have been on the spectrum.

Aspie and autistic pagans are more common than you might think.  I'm active on a large pagan forum where neurodiversity is very well represented and there's at least two other active members on the spectrum, and I've also met other autistic pagans in the course of random online conversations.

All this proves that we come in the same range of religious flavours, from militant atheist to Christian to minority religions to utter apathy, as the general population.  The distribution might be different - I suspect we  might have more people at the extreme ends of the range - but overall we're as spiritually diverse and varied as any other randomly selected group of people.

While we're talking about religion, I'd like to mention the very old and sadly not yet entirely extinct idea that autistic people don't have souls.  I don't know where this came from, but I suspect it's a hangover from the belief in "changelings", which is possibly an old folklore attempt to explain autism.  By tradition fairies don't have souls, so changelings, being fey creatures left in place of the stolen human child, wouldn't either.  Or maybe it's just some ableist horseshit.  Either way, it's perhaps the weirdest and most bewildering lie I've ever heard about autism.

Monday, 4 November 2013

Monday Muster

Happy Monday, dear ones.  Have a beautiful photo by Ikhwan Zailani

Lonely by Ikhwan Zailani
Here's this week's roundup of interesting stuff going on around the internet:

Autistics Speaking Day
Disability as an identity versus an insult, as explained by Hagrid
Being one of Those People
How not to write an article about autism (and how, as a journalist, not to respond to criticism!)
Disability-friendly art experiences

In The Netherlands, there's a plan to "encourage" the elderly, disabled and chronically ill pay for their care through voluntary work.  It's being spun as a means of reducing isolation and loneliness, but it smells suspiciously like making people justify their right to exist.  I don't like the road this leads down, because people don't deserve care because they give back to the economy - they deserve care because they're human beings.

I grew up without a diagnosis, but let's get one thing quite clear: I knew perfectly well there was something "wrong" with me, and I wasn't like other people.  Finding out what was the greatest relief of my life.  So why do people not tell their children about their diagnosis?  That's something Chavisory wrote about recently, and uses an excerpt from Dante's Inferno to describe the feeling of growing up autistic and not knowing it:

How hard it is to say what it was like
in the thick of thickets in a wood so dense and gnarled
the very thought of it renews my panic.
It is bitter almost as death itself is bitter.
But to rehearse the good it also brought me,
I will speak about the other things I saw there. 

Some autistic people talk about a fellowship between people on the spectrum, an automatic 'clicking' where you understand each other and get along from the moment you meet.  Personally, I haven't experienced that.  There are autistic people I get along wonderfully with, but given that autism is so very big, overall I don't think I'm any more likely to get on with another autistic person than with someone who's not on the spectrum.

Autisticook has had a similar experience.  They recently had their first chance to meet other autistic adults in person - and found that the rest of the group's mindset was very different, and very concerned with passing and being "normal".

"Throughout the session, that impression was reinforced over and over. People were asking “If I don’t do things like that, then maybe I'm not actually autistic?” Looking for things that would prove they weren't doomed for the rest of their lives. Looking for hope that maybe some day they could be fixed and be normal. Only seeing the negatives. I felt like I was the only one emphasising the good bits, the strengths, the FUN aspect of autism, the connection with other autistic adults, the recognition and acceptance that comes from finally belonging somewhere.

"It was heartbreaking. It was exhausting." 

I doubt there's anyone with invisible disabilities who hasn't been told "but you don't look disabled!" at some point.  There's a bingo card on Disability and Representation which has some wonderful comebacks for that inevitable line, from laughter and awkward silence to "and you don't look ignorant, but here we are!"

Speaking of not looking like things, a radio presenter I used to work with did an outside broadcast from a big public event while she was in the later stages of pregnancy.  A listener, seeing the voice in his radio for the first time, stared in surprise before blurting out "but she doesn't sound pregnant!"

In fandom news, The Bloggess is on the same continent as me, potentially dressed as a koala.  Jenny also recently discovered the meaning of life, and it makes a lot more sense than "42", which was the closest we'd come til now:

"Cheese is the meaning of life.  Because milk is the beginning of life and you need milk when you’re a baby and you need milk to make cheese and that’s how the world is made."