Thursday, 20 August 2015

Writing it out of your soul

The following is written so that what comes after can come. I keep waiting for the after to arrive and it isn't, I suspect because this is bottlenecking it. I don't really want to talk about it, this is me being utterly selfish. I'm going to write some hard shit down and I'm going to walk away a little lighter. You might walk away a little heavier. I'm sorry. You have been warned.

You know it's chronic before they tell you it's so. Of course you do. You've lived with it for 5 years or so, the 'no this isn't quite right' turning into 'no this really isn't right' turning into 'lets just try this and see how you do' which then becomes a merry-go-round of something like 8 different specialists in 5 different disciplines until you listen to that friend who's being going 'you sound a lot like me sweetie' and you go to your doctor who you've now got an ace relationship and say the magic words 'my friend has this and it's got me thinking'.

For too many people that conversation goes badly. Doctors don't apparently like their patients comparing notes. I understand why, I understand that if it clops and canters it's a horse and not a zebra or whatever that silly saying is. I understand we've all turned into neurotic Googlers. But as someone who's gone way way way past neurotic Googling into avoiding Google completely because it tells you futures you can't deal with yet, I can honestly tell you I am grateful to my doctor. I almost hero worship her. She didn't refer me to rheumatology as fast as she should have done, no, but she was ensuring I satisfied some diagnostic criteria in doing so. As a result last week I was diagnosed with a chronic condition in 20 minutes. It was almost anti-climatic after 5 years of searching for the why's, the how's, the explanation that would satisfy my engineer brain and allow me to move on.

Except, as much as the NHS might like you to believe that diagnosis is the end of the story, it isn't. If only. Then you get sucked into the cycle. Every person with chronic illness knows it. Hell, I've already been through it twice in the past 18 months, I feel like the worlds expert. First there's relief, then there's anger, then there's sadness, and grief, (and fear, no one ever talks about the fear but it's there) and finally the quiet of acceptance.

Except I'm high functioning autistic and I've already been at least once around that cycle already since last Thursday.

And this is where the NHS starts to fall down. I've been offered no help with getting my head around this quite major thing, none at all. I'll be referred to physios, of course, who'll put me through seven levels of pain I didn't know I was capable of and I shant care a bit because at least it will be seven levels of pain it's okay for me to be in, unlike the last 3 or 4 lots of physio (I've been to physio a lot, it really should have flagged something up) which did more damage than good because I was undiagnosed. Not their fault. But then who's fault?

It will be left to my ASD counsellor no doubt to unpack how I feel about being diagnosed with a lifelong incurable condition which few people seem to know about, little research has been done, and which treatment extends to 'take enough painkillers to not cry in pain every morning/time you move and work as hard as you can to build muscles to keep your joints in place' which is useful and works but ignores comprehensively the other symptoms, which are not imaginary as they constitute minor criteria for a diagnosis. But that's no ones fault, is it, that somehow the things which proved I had this thing are no longer up for discussion when we talk about how we treat this thing.

Then there's the revelations that somehow all the not Googling but talking to friends had missed. 'How's your sleep?' asked the Specialist. I laughed. Out loud. Proper authentic knee jerk LOL'd. I tend to comment the one morning I wake up feeling better than when I went to sleep it happens so rarely. It's been happening so long I'd assumed no one slept well. I'd forgotten I ever did that's for sure. 'How's your neck?' A week later I am forced to admit I may have not been entirely honest in my answer that it was a bit sore, having forgotten entirely that occasionally it fails to hold my head up, and that it was, once, not so solid to the touch it felt like a brick, nor so painful to be touched it made me yelp.

Opiates don't kill all pain. I didn't know that before all this started either. I don't feel migraines any more. I don't cry with pain quite so much in the morning. But the bone and joint pain persists, it seems, through everything the pharmacist can throw at it. Heat is the only thing that takes it away but baths make my heart race and me fall down in a muscle wobbled heap so they're kind of a no no these days. Dry heat it is. If only houses came with saunas as regularly as they came with baths.

So much of this I've only learned recently. So much of it I've learned through trial and error. There are forums I should go and read, charity webpages which contain helpful sources of information and research. I should read them. I need to get over the idea I am not permitted to first. The problem is, when you've been tested for suspected MS and then when it wasn't that suspected Lupus, is that after a while, you almost believe completely that they're never ever going to find out what it is. So even when friends tell you that you even look facially like their friends with this thing, you still don't dare to believe you might have that thing. You join Facebook groups relating to the thing, so much of what's posted resonates with you, but you feel like a complete fraud for even joining the groups because you're not diagnosed.

It takes a while for it to sink in that you're no longer a fraud. Even longer to allow yourself to start reading all the help and support that's aimed at 'people like you' because inherent in the reading of it is the acknowledgment that you are 'people like that'.

I wish there was some kind of post diagnosis website the NHS had to send people to where all this was explained. Where you were reassured your feelings were normal. Where you were told what to expect, how you will feel, how you will want to stop feeling. It's such a simple thing, knowing someone has been on this road before you, way before you, and they are still on the road, they haven't fallen off it, and you wont either. The assurance of not alone. The echoes of someone else's battles. The sound of help at hand should you look like your path is heading towards a cliff.

I suppose then, that at the end of all this explaining and self pity, of this soreness and exasperation is a plea. If you attend any kind of NHS focus group thingy, or whatever, could you suggest it? Because I think the time when I may be able to attend those groups myself as a functioning disabled person may be quite some way off and it'd make me feel better to know some good came out of this stage of the cycle. This stage that doesn't have a name by the looks, though I suspect fear would be as good as label as any.

Cheers.

Tuesday, 11 August 2015

Dancing in the rain

[This weekend just gone, I attended 9 Worlds London Geekfest for the third time. This is a review, except it isn't. But it is. Just bear with me. Pre-emptive thanks go to Emma Newman for her Fear and Writing workshop which led to three days of long hard looking at myself and led to the following.]

'So is that your thing then? Writing?' she said. The she being an elf masquerading as a person, dressed in jade green and purple tights, red hair, short and bouncing wildly with the emphatic movements of her head.

'Well when you're sort of passingly good at everything you pick up and try, at some point you've got to kind of choose, and it made as much sense as any to choose something I love to do' I replied. 'I love to make words dance and sing across the page, love to help people see things differently, to help them see things the way I see them, which isn't always entirely normal'. Or at least that's as close an approximation as I remember.

Before this she'd appeared from nowhere to ask where the toilets were. After that we'd discussed boyfriends and it transpired that she was actually me 15 years ago, close enough to make me momentarily question whether actually she was real at all or whether my subconscious was laughing at me and I was dreaming.

She asked for advice. I told her everything I wish I'd known before but am proud to wear the battle scars in the process of learning. And then we parted ways, never to cross paths again.

This is what 9 Worlds is.

We sat at the front of the Bifrost cabaret, after bumping into someone from a previous life and this causing much head breaking, but also before I'd realised that of course he would be here taking photos because no one else can take pictures of elves quite like he can. A person in a green dress welcomed us all, paced with the kinetic energy of a being far larger than them, and proceeded to sing about Gamergate to the Portal Still Alive song. I felt less alone, less sore and less invisible instantly, because the song was about being invisible and I am. In game space I am. I am eternally grateful that I never picked up the book about cute fluffy animals that she read so eloquently from. But I am also grateful that even when as a child I thought I was alone (books, cute fluffy animals), I wasn't.

This is what 9 Worlds is.

'Let's not discriminate against those with a lack of imagination' said the only female panellist of the Books vs Comics vs Games vs Film & TV: FIGHT panel (the mod was female too; this isn't about gender, but as an identifier without breaking flow to check the programme for names it will do). She laughed. We all laughed. I laughed. But I also quietly said thank you to her under my breath for noticing when Pete Newman (who is lovely) made a comment about reading books being a collaboration. I briefly felt alone. As if I were the only person in the entire world who doesn't imagine anything when reading. I remembered the moment when I discovered I was a freak girl who read 50 fiction books a year but who imagined the faces of precisely none of the characters I'd fallen in love with. I remembered the grief I felt, briefly, that I would never have the same reading experience even as my husband, never mind everyone else. I don't know if the panellist who made the comment saw my face; I was looking down at my knitting, which is of course there for the very purpose of being looked down at because Eye Contact, but nevertheless it was appreciated. I felt less alone.

This is what 9 Worlds is.

'What do I do with this?' said my friend brandishing a skein of yarn. It turned out to be special yarn, in that it was dyed in order to expressly represent intervals, I think in an aural interval and I vaguely remember Blink being mentioned but I'm not sure. 'Oh that needs to be knitted with like this' I said and fell into a long chat about wool, knitting, crafting in general, geekery and friendship affirming. The previous day I'd sat and taught someone to drop spindle to spin their own yarn, and had found words I didn't know I had which enabled me to explain in an orderly and easily understandable fashion what we were trying to achieve, how simple the thing actually was we were trying to achieve before demonstrating it and then leaving her to do the working out bit herself. I spent many panels knitting while next to me someone embroidered and behind me others knitted also. For me it enables me to avoid eye contact. For others it is possibly simply something to do with their hands. Who knows, who cares, it doesn't matter. We were simply left alone to get on with our crafting with nary a raised eyebrow to be seen.

This is what 9 Worlds is.

'I'm really glad you were in this panel because I nearly left at the point where everyone was asked to self identify gender and sexuality, but the fact that you are you helped me understand that I could learn something and so I stayed' I said. This wasn't met with confusion, nor backing away which I was quite worried it would be, having sat and stewed for at least 10 minutes before the panel had even ended about whether I could be brave enough to go and talk to a proper real-life author about something that I felt quite strongly about, even though I had a sneaking suspicion those feelings might be at least recognised by the recipient even if not directly felt by them. What followed was a discussion on gender and sexuality fluidity, the need or lack thereof of self-badging and labels, the acknowledgement from both of us that actually they could be quite useful but also that LGBTQ+ discussions were still being defined by Tatchell's Stonewall era and that at the point where my mother has managed to move on with her thinking, maybe we all should too. My mother who never had a problem with anyone I brought home to meet her, nail varnish and eyeliner wearing or no. My mother who had absolutely no problem with my formative years being spent on a podium in gay clubs. That kind of mother. I came away knowing I'd been heard and understood, also knowing I'd wittered a wee bit too long, but also knowing it wouldn't be held against me.

This is what 9 Worlds is.

'Even my elbows hurt' I said on Sunday after someone had kindly enquired how I felt after unwisely becoming overenthusiastic on the dancefloor at the post cabaret geekrave the night before. I missed panels I wanted to go to - Writing the Other being one of many. I was vaguely aware people were missing panels due to them being full. I was also aware I was privileged in my disability, which meant I was allowed to leave queuing to the last five minutes because someone was kind enough to think to let us broken bods in first. I didn't use any of the Quiet Rooms because I sat outside instead. But they were there should I have needed them, which is probably why I didn't. I have nothing bad to say about Access at all, and in fact quite a lot of good. Signage was excellent; the non-gendered toilets were refreshing; the indicators of urinals and sanitary bins useful; and the thought which had gone into not just dumping all the priority seating at the front, utterly fantastic. I only noticed it on the last day because I was assuming they'd all be at the front, but as someone who find it incredibly anxiety dampening to have her partner next to her during panels when she's feeling a bit wobbly, having priority seats on ends means I can do this without him tying up a priority seat too. I am more grateful than I can express for the hard work, focus, thought and kindness which has been shown by the Access team this weekend. A prevailing memory for me will be a BSL interpreter in costume, sat at the front of the cabaret on the floor, happily signing the lyrics to the Gamergate song.

This is what 9 Worlds is.

In my imagination, 9 Worlds is a Venn diagram. On each world is the representation of a group of people who for whatever reason find mainstream cons too much or not enough. There is a world for sexuality, a world for disability, a world for people of colour, a world for gender, a world for the niches inside the niches, a world for none of the prior.

9 Worlds allows all of us to come together to play nicely. We can each make a choice. We can either stay on our world inside our bubble, or venture across the rainbow, be that into a new track of fandom or into a new room full of new people who might or might not accept us for we are. We can choose to embrace peoples confusion or lack of understanding and take an opportunity to educate. We can choose to be visibly something, or visibly nothing. We can choose to badge ourselves "other" or meld into the masses of other, making new colours and new rainbows. We can choose to accept heartfelt apologies and send hugs back, we can choose to be hurt and grumpy because someone kicked our stick out from under us. We can choose to laugh about a lack of imagination or we can choose to grieve what we now know we miss. We can choose to pull together, wrap our comrades in nerdery in a warm, fluffy, rainbow in every sense embrace or we can choose to divide, to section off, to step outside and away.

I am a high functioning Autistic, half hearing loss in one ear, hypermobile spontaneously dislocating, muscle spasming, heart rate randomly fluctuating person who until last week was in the midst of the longest depressive episode of my entire life. Some mornings I can't dress myself, some days I forget to feed myself, most days I am in pain and wear a patch that tries to help with that. I can choose. I am choosing. I am choosing all of you. Every single person who went to 9 Worlds is someone I want to know, I want in my tribe. The educated, the soon to be educated. The broken and the able. The straight hims and the genderqueer asexual hers. I want to be in your tribe and I want you to want me in yours. 9 Worlds is the most forward thinking, intellectual, emotionally intelligent, comfortable-in-its-own-skin con I have ever had the privilege to attend. It can be better. It will be better. It is every single one of the attendees' jobs to make it better. We all have responsibility because we are all tribe.

I'll be your 7 of 9, if you'll be my Data. All my love and thanks,

Louise


Wednesday, 1 April 2015

Autism awareness week

This week is Autism Awareness Week. We got a whole week! I'd guess that'd be something to do with the rising incidence of autism in the UK and across the world.

I am a girl who is autistic. This makes me a rare bunny according to current estimates - some of this it seems is to do with the 'missing diagnosis' of girls and women with autism, some of it is probably to do with the gendered diagnostic questions (do you collect things? Examples, insects or toy cars) and some of it is with the focus on the 'male brain' aspect of autism..

It also feels important to differentiate (or not) between classic autism and high functioning autism. For some autism comes with a learning disability element. For some it doesn't. For some it is physically disabling. For some it isn't. For some it affects vision. For some it doesn't. This is why autism has been reclassified as an Autism Spectrum Disorder. Ignore the disorder bit - that's not helpful. I am ridiculously ordered. But spectrum? Yes. I am at the high functioning end. It means my IQ is...a number greater than average. Lets leave it at that.

So what do I wish you knew about autism as an autistic person? What do I hope would make you think twice before saying or thinking something derogatory or harmful? What do I think would make you have more patience, to enable you to be kinder?

1. Social cues

Lets get this straight. Rudeness is intentional. There is intent on the side of the person who is not saying good morning, or who is interrupting you inappropriately when you're already having a conversation to be rude. They are aware they are being rude. They just don't care enough to follow your social rules.

Autistic people are not intentionally rude. It genuinely never crosses our mind to say good morning if there's something more important to say first. Why would we say good morning if there is a broken lift we've just been stuck in, or we're exhausted from the journey from hell? Oh wait, we'll get to that in a moment, the thing about interacting with people when we're in 'overload' already. Sometimes, take it from me, you'd be glad we hadn't started any conversation, you'd end up with a garbled and confusing run down of our journey or experience trying to obtain a coffee.

Interrupting inappropriately is a very similar thing. Generally, we're coming to you to talk to you for a reason. That reason is sometimes on a loop inside our head - either as a way of retaining the information so we can remember what it was we wanted to talk to you about, or because it's got stuck and is looping without us wanting it to. Nevertheless, we need to get it out. Now we can't read you at all - we'll get to body language in a second - so a lot of the time we don't realise we're interrupting inappropriately anyway. As far as we can work out, when there is a gap in the conversation it is okay to talk, because it seems to us that that is the point where you have chosen to stop talking. This might seem silly to you, but you don't realise how you process these cues and understand them instantly. You do this without even thinking about it. We can do it but we have to think about it. That takes processing power. 

So maybe, next time someone doesn't say good morning, notch it up to not being aware, not ignorance or rudeness?

2. Body language

Have you ever noticed that there are some men/women who haven't picked up on your clear signals you're interested in them? Been confused when you've got 'interested' signals back but never been asked out? Possibly that person was autistic. 

Dating is at the advanced level of human interaction - everyone struggles with it a bit. Oddly, it's not something I ever have. 'I like you, shall we go out for dinner' cuts straight through a lot of the...politics of dating, I've found. In fact in this respect, I believe autistic people are way ahead of those who are not. Pop that in the superpower pot. Unfortunately, there are things far more complex than dating for us. Like when to say good morning and when not. When someone does want company to lunch and when someone does not. Get these things wrong once or twice and people put it down to you having a bad day. Repeatedly get it wrong and it can lead to people getting very cross with you. Now that sounds like it might be out of proportion, and of course it is. Except a lot of the time, people don't actually want to be at work for whatever reason (children, hate their job, not getting paid enough, tired, hungover) and after a while, the person who's not reading body language can easily become a target for whispered comments and being avoided in lifts. It winds people up. 

Not as much as it winds me up though, I'd wager. Because time after time I have found friendship groups closing and work teams closing against me. I talk too much or I don't talk enough. I never get it just right. Adding it to the above and it's not a great combination.

So next time someone is doing something which is annoying you, maybe tackle it kindly? Take that person aside and gently explain to them what it is they're doing wrong? Similar to how you'd tackle someone on an issue of personal hygiene perhaps? 

3. Sensory overload

Everyone on the spectrum has different tolerances. Everyone has different triggers. Some of us know our triggers super well and will do anything and everything to avoid them, despite your best efforts to tell us 'we'll enjoy it once we get there' or my personal favourite 'you'll feel better when you've got it over and done with'.

No.

I won't. What you see as at best a weakness of character and at worst wilful avoidance, is for me a case of avoiding a meltdown. Now meltdown brings to mind images of a child on the floor throwing a tantrum, screaming, crying and kicking. And yes, you know what, even as adults that's what a meltdown looks like for some of us. Judging? Smirking? 

Here's what's happening in our brains. A complete detonation of every sense we have. It usually starts, I think, with one sense overloading. It's like a circuit in your house. The kettle doesn't turn itself off. The kettle keeps boiling. Steam gets in the plug. The plug shorts. The fuse trips. That's my brain and the worst thing is? I can feel it happening and yet past a certain point, I can do nothing about it all. See also anxiety which we'll talk about in a moment. But my meltdown doesn't look like your stereotypical version of a meltdown. Perhaps it's because I'm a girl. There is growing murmurs that while a typical man will act out, a typical woman will internalise. I internalise. And as I do I shut down. As my senses become overloaded and short out, my brain slowly shuts down to protect itself. This can manifest as anything from a literal inability to speak, to a looping - either a physical one or a verbal one. The only thing that will make it better is being left alone, and ideally removing all sensory input completely - something I'm sure you will all be aware is becoming increasingly difficult in this world of ours.

So. I am now the expert in avoiding my own triggers. Next time I say 'no I can't do that' please trust in me there is a really good reason that I cannot do that. Perhaps not now, perhaps not with you. But not now.

4. Anxiety

'We all get anxious, what you making a big deal out of now?'

If anxiety were a scale from one to ten, most people would start at zero. Most of life would be a zero, with occasionally difficult things flicking the needle up higher, in direct proportion to the difficultness of the thing currently being encountered.

I start at 3 or 4. I never have no anxiety. I have learned to manage this. It started with accepting the anxiety, a mindful approach. Now it focuses and is intertwined directly with the above. Managing and avoiding my triggers has reduced my anxiety almost down to a constant 3. But the problem is, when you're starting at 3 and not 0, it can look very odd to someone who doesn't realise that when you suddenly become what appears to be massively anxious over something relatively simple like going on a shopping trip to a new place. You would rise maybe 1 or 2 points on the scale, to 1 or 2. I rise 1 or 2 points to 5 or 6, You see the problem? And when combined with the next thing on the list in can be mighty tricky to manage.

5. Early warning systems

I don't have any. In an MRI, if you looked at my Amygdala when a source of stress were introduced which would slowly escalate to become a major problem, my amygdala wouldn't fire. Yours would. That's because you can see a problem coming, your body tells you, then you avoid the problem. I don't get the early warning. So the first time I know I'm anxious is when I am at 5 or 6 on the 1-10 scale. Or at least I would if I only relied on my Amygdala. I do not, of course, now rely on my faulty Amygdala, I instead rely on my stomach. But until someone helped me identify my alternative early warning system, I was lost. And I spent a lot of time extremely anxious. To the point where I was having full on anxiety attacks 2-3 times a day every single day of the week for over a year. Sound tiring? Yep. It was. 

So when someone is freaking next to you and you don't know why, it's not that bad, really it's not, maybe share that? 

6. Superpowers

Tricky one this. I hate the word Savant. Quite a lot of us do, anecdotal observation tells me. It's an ugly word, harsh and angular. That probably doesn't make sense to you. But words have shapes, and sounds and a 'something' attached to them which I can't quite explain. Some words are nice and I use them a lot. Regular readers will know which ones. And some I dislike intensely and try to avoid using on pain of death. Savant. One step away from spitting. This, I suppose ironically, is perhaps one of my superpowers. Words aren't just words.

I also hear words. I read aloud in my head. On Twitter, I hear the tweets being spoken by the people who've tweeted them if I've met them. I am far less likely to misinterpret the tone of a tweet from someone I have met. 

This may be linked to the next superpower which is the ability to write the things I write for CIO and Forbes entirely in my head without writing a note or a draft. I don't do drafts. Things float through my head in the preceding week before writing an article and then I sit down and write it - usually in about an hour. How long did it take me to write the article? An hour. Except of course it didn't. It doesn't matter if the article is 300 words or 3,000. This is the way I work. 

Then theres music and colour. Sensory overloads also come with one level down, which is sensory intensity which is the right side of not good. So sometimes I can go to a gig and it's horrific and we end up leaving after an hour. It'll be a combination of heat, noise, sound levels and balances, lighting, the venue and the people within it. But sometimes, just sometimes, gigs are the best places on earth. A perfect storm of lighting, singing, dancing, people, atmosphere, the right level of happy drunkenness, perfect sound levels and a band who are happy to be there. Those are the moments when I forget I must fit into everyone elses idea of what normal is and I just switch off. I close my eyes and I dance and dance and sometimes I open my eyes and find I have gathered fellow inhibitin losers beside me and we look at each other, grin our faces off and disappear off again. And not a drop drunk or a substance imbibed. It is by turns the most beautiful, but also the most intense place to be and they are the moments which fuel me.

Unfortunately...well lets talk about that next...but if you ever see a girl with her eyes closed dancing badly under the lasers with the silliest grin on her face you've ever seen, it's me. Unless my eyes are open, don't interact. Don't touch. Just let me be.

I also have almost perfect visual recall. I have to concentrate, I have to mentally take snapshots. But I'm the girl who knows where everything is in her suitcase two weeks after she's packed it. Lost something? I'll tell you where it is, even in your house. Changed something since I last visited? I'll notice. I can read a page of a book, close my eyes and reread the page. I can recognise a lot of songs from the 1st bar. But I can't remember any of the script of my favourite shows which is a good party trick to have. I used to be able to remember conversations months later word for word but my memory isn't as good as it once was. 

I can learn anything. Well almost anything. Medical stuff confuses me a little bit but I understand the basics of neurology despite never studying it, see also quantum mechanics, art, Tudor history and a few other things I never even studied at GCSE. 

Just don't use the word superpower in my hearing. I get to call them superpowers, they're my bodies compensation for the utter fails in other areas. You call them superpowers and I'm going to offer to put my knickers on over my jeans. Just. Don't.

7. Concurrency

We come with other stuff more often than not. Some people just get blessed with autism. Others with autism and anxiety and depression. Yup, hands up (all under control now). But there is a whole long list of 'and x' that people with autism seem to be more likely to need to deal with. Dyspraxia and dyslexia are quite well publicised (I'm clumsy but for different reasons). 

Hypermobility unfortunately seems to be quite common, especially in women. And it seems in me. My knees dislocate and 'slip' out of joint. The bones in my feet occasionally get confused what order they're supposed to lie in. My little fingers stick out at funny angles and I've currently got a sprained elbow. I've literally sprained my ankle in socks on our kitchen floor. Fish oil might help your joints. Last I looked it doesn't stop joins dislocating. My joints dislocate probably because the collagen is faulty. Fish oil doesn't help with collagen. Neither do collagen pills. Please don't say something ridiculously stupid in an effort to be helpful. I don't want you to be helpful. I'm not telling you I projectile vomit when I come around after fainting to ask for your help - I'm telling you so you don't get covered in vomit. I've mostly got the not fainting in the first place covered....mostly.

So there you go. 7 things I wish everyone knew about autism so that they didn't say stupid, insulting, judgemental things to me. I reckon I spend the other 51 weeks of the year trying to fit into your crazy world with its invisible rules, faces that all look the same, noise that's often intolerable and in way way too close proximity. I reckon this week I get to tell you ways you can make being in your world, under your rules, a little bit easier for me.

Let me know if it helped.


Sunday, 2 November 2014

What I mean when I say I'm autistic

This post appeared on my Facebook timeline and it's made me think a lot about what Autistic Spectrum Disorder actually means.

I actually don't exist as a diagnosis. I was diagnosed in February this year, all official like by a Clinical Psychologist via a charity which has received permission from yet another official centre for diagnosis in Nottingham to diagnose away from that centre. Which is good because I live a long long way from Nottingham.

I was actually officially diagnosed with Autism Spectrum Disorder but the assessment and diagnostic process I went through was for Aspergers Syndrome. I score 45/50 on an assessment which was based partly on about 100 questions (I think it was that many) that were short and to the point, and then another assessment with the psychologist who also assesses your behaviour, speech patterns, body language etc. A combination then brings you to the final number out of 50.

I scored higher than I thought I would. This made me feel like a fraud. Then I started reading every book and article I could lay my hands on about women and Autism and it all suddenly started to make sense.

Drag queens and transvestites used to call it passing. Looking so much like the woman they're intending to be that no one bats an eyelid as they pass them in the street. It seems to me that one of the biggest themes running through literature relating to woman and autism is 'pretending to be normal'. Of passing. Of not blipping on anyones radar, of learning to hide things which mark them out as different or unusual.

I also realised that this is a skill I don't have. I cannot pretend anything. Either I feel something or I don't, believe something or I don't. Want something or I don't. There is no artifice, no deception. You get what you see and you hear what I think.

But I must have been hiding something because my behaviour has changed slightly since I was diagnosed. I stopped apologising, first and foremost, for things which were not my fault, not my monkey and not my worry. I stopped disclaimering everything, trying to preempt issues before they arose, trying to smooth the way for everyone else but myself. I stopped thinking 'I mustn't do that, people will stare' and starting thinking 'That helps me exist in this world without harming my mind, I'm going to do that now'.

A diagnosis is for no one else. It's for you.

In a lot of ways, writing this is for me, not for you.

I am learning to be, by my own slightly warped definition, selfish. I'm discovering who I actually am, not who everyone else thinks I am. Whatever you think I am that's what I'm not has never felt truer. I am capable of enormous love, care and kindness. I have wonderful friendships which yes, require a little more conscious processing and conscious stepping than for most, but it's amazing what 'no really, you actually seriously have to be blunt with me and tell me the truth' conversations can do. I go to counselling fortnightly and walk out of every session a little taller, a little more grounded, a little more assured of myself, my identity, and where autism has shaped me but also fits around me.

The storm of before is quietening and in its wake is a blissful space in my mind. It's not until the noise stops that you can understand why there was no more room for any more data in there. I had reached capacity. In computer terminology my hard drive blew. I never ran defrag. I never reordered. I never deleted the documents I no longer needed to keep right at the forefront of my mind.

A diagnosis is your key to yourself, but also the key for others.

I never realised I had super powers. Not like Iron Man. But I never realised that in the process of, for example, my amygdala completely not functioning the way it should, other bits of my brain fired double time. I never realised other people couldn't just read a page of text, process it and then summarise it in 2 minutes. I didn't realise other people didn't stop in awe at how the rain was slanting through a streetlamp at a tram stop in a city full of dark and grey. I didn't know that sensory issues can also be wonderful things, that the same thing which means I have to cut out labels sometimes still as an adult means that I drown in cotton wool dreams when soaking in the lighting and sound and heat of a gig.

Everything balances. He/She gives, and he/she takes away.

Spectrum means just that. It means a collection of symptoms. You wouldn't notice if you weren't intensely social animals, herd like in your tastes and clothing. I stick out unless I try not to and the sheer amount of processing required from me to not stick out is something I cannot do any more. I can't. My body has clearly and loudly drawn a line and told me that if I push much further I will have burned through everything and there will be no replacing that. So I have to choose. Select which things I will allocate processing to and which I wont. Combined with an autistic hyper focus which often means I forget to eat or drink this requires some careful managing. I'm still not there yet. I'm not sure I'll ever be there. Looking after myself is difficult. There I said it. Remembering to eat and drink, to eat and drink the right things at the right time, to wear the right things to the right places for the right weather, to say the right things to the right people in the right order but only when they look like they want to talk but not when they don't but I have no way of knowing when that might be because I need to know someone super well to be able to read their body language and I do mean super super well and the chances of getting to know someone I work with fast enough to be able to read before I say or do the wrong thing is just impossible and there's always so many people in teams and I've to learn all of them and of course I'm trying to tackle this problem intellectually and analytically but people don't work like that, they're not zeroes and ones and...

That's what you pay for your super powers. Alone. Lonliness. A constant feeling of other. Knowing you're always going to be 1/2 a second behind no matter how fast your brain is computing all the possibilities. Knowing that it's inappropriate to tell someone you've only just met a list of things they are and aren't just from seeing a few tweets and briefly meeting them - yes way before Sherlock and yes I wince a lot but also I love it because someone else is seeing what I see how I see and no I don't have a mind palace, don't be ridiculous but  I totally bet a whole load of autistic people do...I'm not appropriate. I am not polite. I am not intentionally rude but apparently I am accidentally quite a lot of the time. I am blessed with just enough self awareness to know when I've misstepped yet again, just enough social awareness to know I'm being ignored and frozen out with just enough unawareness to be oblivious to the why.

I spend a lot of time looking at people and wondering why they're being so cruel, so vicious, so bitchy.

But I also spend a lot of time now thinking that not all people are like that. Not all people are like that all of the time. I have interpreters, friends who patiently and gently explain that no, that's not what was happening in that situation at all, this was, and actually I misread it and this is how I can not misread it again.

Counsellors can't solve everything. They're an incredibly important piece of the puzzle, but they can't tell you the things that friends can tell you.

So actually, this is a post about friendship, really. It's about finding myself and who I am. It's about the quiet coming where before there were storms.

It's about getting better. And that's what I mean when I say I'm autistic. I mean, I am autistic. But I also mean, I am me. I am getting better.

Thursday, 30 October 2014

Who deserves our care?

Some of this is my story. Some of this is others stories as told to me. You don't need to know which is which.

The Coffey report was published yesterday, an investigation into child sexual exploitation on the back of the Rochdale investigations. It says that child sexual exploitation is the new social norm in areas of Greater Manchester.

I wasn't surprised.

Somewhere in the last year we were returning from yet another appointment at yet another hospital in Burnley. I was feeling a little unwell but one thing stuck in my mind. The time was somewhere between 3 & 4pm in the afternoon, during the week, possibly a Wednesday. Young girls were walking down the streets on their way home from school. And as I watched, a car pulled over and a middle aged man shouted something I couldn't hear at two girls. They stopped, checked I assume to see if they knew the man, then sped up and disappeared off down the road as the man in the car drove off laughing.

I knew what that was. There's a reason for that.

Somerset, as it was when I was growing up, was very different then to how it is now. Older farmers, who'd never married were often encountered walking into towns and villages in the early evening, heading to the pub after the milking had been done. It was one such chap who accosted me while I was cycling down the main road out of Ilminster to Chard. I was going to water the flower box which was under the 'Welcome to Ilminster' sign as my mum had volunteered to do this each evening, but hadn't been able to do it that evening for some reason. An older farmer said something to me as I passed so I stopped. I can't remember what else he said, all I remember his him trying to kiss me, and freaking out completely, leaping back on my mums 3 speed sit up and back and hammering away from along the main road as fast as my spindly legs could carry me.

It wasn't the first time, and nor would it be the last that an adult made me feel completely at a loss, completely vulnerable and completely sick to my stomach. I am not alone in experiences like this either. I've told this story to 5 other women. Two of them had similar stories of becoming separated from parents and being backed into corners.

I stopped because my mother taught me it was polite to, to not be rude, to respect my elders. She taught me never to get into strangers cars, but she never said what to do when someone who I was supposed to respect did something completely inappropriate.

I never told me mother. She doesn't read this blog. I suppose I should...but why didn't I at the time?

I thought it was my fault. I thought I'd misread the situation somehow, that somehow I'd given some kind of signal that said that that was okay. I assumed I was at fault, because he was the adult.

So to say that I understand why young girls get into the tangles they do is an understatement. And for far more unpleasant and horrid reasons than this. I understand the confusion. The self blame. I can understand how taking risks becomes attractive because at least you're in control and you know the rules. I can understand how that moves into self harm, to the 'I deserve this, I'm worth nothing' mentality. Repeated exposure to adults who are not following rules is horrendous no matter how your brain works. That this often happens when the victim themselves are in the throes of hormone disruption, their first period, arguments with their parents, isolation from support networks only creates a perfect storm.

Add to this the internet. Add to this the formation of gangs who can communicate across County and Borough boundaries and I suppose it's no wonder the perpetrators feel that they're invincible.

Imagine how those girls feel when they finally sum up the courage to tell another 'responsible adult' what's happening them and they're at best ignored. Imagine how confusing it would be for a young woman who's never been told that the police are supposed to be there to protect everyone, that they're supposed to be there to deal with these crimes as well as the more well known and accepted ones like burglary and car theft. She tells someone, the police get involved and she's scared because as soon as the police are involved, she feels even more like she's done something wrong, because maybe her only dealings with the police ever have been when she's done something wrong.

Imagine how being disbelieved feels. But even more, imagine how what you wear, the same as every other girl you know is the reason for that disbelief. Imagine if your father is abusing you, you are completely confused about why that is happening or what to do about it, the CPS go to your father to gather evidence, he calls you a slag and the CPS believe him. No, I don't know if the father quoted as saying that in the Coffey report was abusing his daughter. But I wouldn't be surprised. No, not surprised at all.

You see...and how can I say this gently...sexual abuse is far more prevalent thing than you want to acknowledge. It's not just grooming gangs. It's not just complete strangers. Stranger abuse is the thing we are talking about right now and that is fantastic, but we need to not forget that abuse happens in all classes, in some families and in all areas of the country. Don't become complacent that your town is safe. Don't believe that your town is too nice for that sort of thing to ever happen there. Instead, please, talk to your daughter. Talk to her and ask her if she knows what to do if someone touches her inappropriately. Check she understands the definition of inappropriate. Reassure her, really reassure her that if she ever has any problems like this she will be believed and it will be tackled and something will be done. Hear her. Back her.

Sadly though, I'm going to guess that if you're reading this, you already have. So spare a thought for the girls who for whatever reason, don't have a you. No one to warn them, no one to guide them, no one to believe them. If you can, if you have the time, find a local charity to you, a charity that looks after children, that warns children, that teaches children about the difference between inappropriate and appropriate. Donate some money, or even better some time.

An awful lot of young woman with no one say thank you. Thank you.

Thursday, 16 October 2014

Why I love videos games

Why I love video games by Louise. Ages 30 {mumble} and a half. Yep. Exactly. 

Gamergate sucks. Literally as well as the other. So here's why I have loved video games, currently love video games and will no doubt love video games until I'm 50 something. I doubt I'll ever know better. 

I have walked. Through the Los Angeles of the 1940's, across the dessert of the Wild Wild West. I have run, nay sprinted for my life as dragons so big their tail ends have dwarfed me have desperately tried to wear the robes from my back. I have shot holes in floors and ceilings and floors and ceilings and believed that the cake is a lie. I've captured untold flags, both blue and red in hue. I've driven Cadillacs and the sweetest singlespeeds. I've flown aeroplanes and spaceships, ridden Sabretooth Tigers. I've drilled and quested and drilled some more so that the other teeny tiny avatars gathered around me do not die today. 

I have dreamed. Of beautiful vistas and wastelands. I've dreamed of tactics and keypresses. I've bunny hopped and cheered as 'Headshot!' has blasted through my crappy little Creative speakers. 

I've commanded armies and revived friends. I've made friends and lost them. I've met them and drunk with them. Some of my friends have met their boyfriends in these other lands. Some have honed epic leadership and organisation skills. Some learned to walk tall, some to walk small. 

We have all learned. 

This is what games mean to me. Those little packets of plastic that contain a disc? That little black box beneath the amp and the Sky box? Portal. Window. To laughter, freedom and friendship. To being good at something when today sucked. To belonging somewhere when life looked unfriendly. To colour when it looked grey. 

Video games are beautiful. The sheer scope and scale of something like Assasins Creed. You may only see the blood and the killing. I'm clapping with glee as Venezia is rendered before my very eyes, a playground to explore, every architectural detail sucked in with eyes wide in wonder. 

I am not a normal gamer. I don't chase completion (though LA Noire is stuck on 99% cos bug. Oh wait no sorry, cos feature), I don't chase achievements. I chase experiences. The gleam of chrome on a beautiful car. The reflections in the pool of water my character just stomped through. 
The click clack mechanics of a new gun. All of this is beauty, and all of it rendered, just for me. 

This is what gamergate can try to take away from me, but it never will. Video games are my wonderland. I play them, I am female. Hear me spell cast/assassinate/backflip/coin collect/case solve. Over and out. 

Note. Tapped on my pad. Mistakes inevitable. Sorry. 


















Wednesday, 15 October 2014

Putting your big girl pants on

It's a funny phrase that. One of the few funny phrases which make complete sense to me however, as the act of putting on different pants for different situations can be an actuality.

I don't deal very well with idioms. I didn't know until I was diagnosed with Autistic Spectrum Disorder (Aspergers) that there was a reason for this. I didn't know that when a friend said it was raining stair rods up in Cumbria, no one else got a literal visual interpretation of this which resulted in sheep impaled bloodily by stair poles.

Yes, really. Being Aspergers (it's not something I have. It's something I am.), somewhat ironically results in some of the funniest moments, images and conversations. My partner has become all too used to answering ridiculous questions such as 'why do people say things they don't actually mean?' and 'why on earth do people say such ridiculous things and never even crack a smile while they're doing it?'

In fact, the reality is, my partner is my responsible adult. We joke about it a lot and it started as a joke way before the diagnosis. But he is. Telling people he has resulted in some wonderful conversations so far, most notably with the nurse doing the pre-consultant weighing and blood pressure checks. We covered her partners Cerebral Palsy and my Aspergers with ease and comfort only given when two people are not trying to avoid saying the wrong thing but instead are genuinely interested in how something affects someone and the workarounds which result.  

And that's the greatest gift a diagnosis gives you. Freedom. It's not an excuse, it's a reason is something I have typed in the last 8 months more time than I can count. I ask for no ones sympathy and no ones extra effort. I simply ask for understanding. Are you asking me to do something which is so easy you wouldn't spare a thought about it but that for me requires 3 hours of psyching myself up to do? Or vice versa - are you asking me to do something I can do in my sleep (oh look another idiom which is highly amusing when taken literally) which you expect me to take days to do? Are you assuming that the thing which was so easy it took minutes means everything I do is so easy it take minutes?

That's what it's not an excuse, it's a reason means to me. It's what diagnosis means to me. It means I can cut myself some slack but you don't need to. It means no longer crucifying myself every single day because I can write a nationally published article which over 10,000 people will read with no editing at all, but I can't cook. Social situations baffle me and sometimes terrify me if they combine expectations and a role I am supposed to be performing but I don't know what that role is because no one else needs it to be explained in minute detail. It means I can turn to you and say no. No because this will be too stressful for me and this is why. No because you haven't explained in enough detail what you require from me and until you explain more I cannot deliver the thing you need me to deliver. No I wont be the first person someone interacts with face to face for your brand but online? Oh absolutely. No problem. And here's why.

Is that making excuses? Is that asking too much from you? Is that not an interaction you have the time for? 

Well bully for you.

Every single day, I put my big girl pants on. Every single day, I do something which scares me a lot. People say that to people as a motivational tool and I'm sorry but I am not the right person to say that to. Every single day, there will be something that I have to do in order to keep a job or keep a relationship or friendship which I do not want to do because it scares me, but I do it anyway. It's exhausting. No, that's not an exaggeration. It's so damn tiring - the psyching yourself up, the self talking that everyone tells you will help but doesn't, the visualisation techniques everyone tells you to use but which are flipping useless when you have no imagination, the constant warding of the anxiety gnawing in your stomach which means you can't east until the thing is over...

Every day.

So we come back to putting your big girl pants on. We come back to cutting people slack. We're back to walking in someone elses shoes. Can you imagine that? Can you actually imagine fear of that level every single day? How does that taste after a week of it? A month? A year? Can you taste the acid in your mouth from all the anxiousness? Or does it taste metallic, that fear? Can you focus and concentrate and do your best work when you can taste that taste in your mouth? Would other people telling you to imagine the audience with no clothes on work if you had no imagination? After a while, would you start to wonder why that didn't work, why you couldn't self talk yourself through, why visualisation didn't work? Would you start to feel like a failure, despite confronting your fears every single day?

What I am is not a failure. I am a warrior. Every day I face my fears and I do something brave. I am scared and I do it anyway. I may not do it well. I may not do it perfectly but I do it. Every single day of the week. Sometimes my anxiety levels are out of control - those are the days when I have to do more than one thing that terrifies me. Some days my anxiety levels bubble along quietly, barely registering on my consciousness. Those are the days when everything is easy, everything is a known quantity and there is nothing unexpected. They are rare. 

So here's a thing. If you know someone with Aspergers, or you suspect you do, and you're getting frustrated, annoyed or irritated, think about this. Think about the battle which is going on in their brain. Think about how tempting they may currently be finding it to leave the situation which is no doubt causing them twice the frustration, annoyance or irritation it's causing you. Think about the strength of character it's taking them to stay. 

Life isn't easy for anyone. I get that. You've got children and emotional baggage and affairs and all kinds of shit going on. I get that. But those things, they fluctuate. They change. Our Aspergers doesn't. It is a state of continual stress and anxiety that you only experience during times of divorce, moving house or planning a wedding. Those things are easy for me. But the other days. They are not. And we all know which way life is weighted.



Tuesday, 14 October 2014

Talking about my generation

Today is Ada Lovelace Day. If you've been around a while, you'll remember I used to make a point of always posting something to this blog on that day. I will leave it to the reader to surmise why that tradition stopped and why it is now restarting.

So. Gamergate. Ada was a woman in tech.She was a mathmetician, yes, but she worked on the very earliest example of mechanised computer, and for me that counts as a woman working in tech. In the 1800's. She was also a programmer - her Notes containing an algorithm for the first mechanised computer programme.

So. Female. Technical. Programmer.

Not a gamer though. We have to wind forward 150 years for that particular tech to finally start to come into its own. Though I'm not sure Gamergate is an  example of an entertainment form coming into its own. No. Instead I like to think of it as the point where an entertainment form realised it has a problem - and then spectacularly assured the solutions to that problem would never appear. For any one woman to consider following a career path into games making, I think, after the last few weeks would be equally brave and foolish.

Because who, exactly, would voluntarily enter a profession where it is likely at some point that this will happen to you (click for the US site - UK readers obviously aren't interested in such feminist content judging by the headlines you get if you do click through). Yes, that is an adult games developer in the US leaving her home because someone posted her address on Twitter and threatened to do horrific things to her and her husband. It's a beautiful attack in the way it manages to be sexist, racist and utterly terrifying all at the same time.

She's not the first either. Nope, this isn't a one off to be swept under the carpet. At the moment it feels like every week someone somewhere finds another female game developer who has the audacity to have a mouth and use it for something other than night time activities, provokes them, abuses them, and finally death threatens them.

So who are these someones and where have they suddenly come from?

Well. Uncomfortable truth time. They're probably your son. Or your friends son. Or your brothers or sisters son. You see the chances are quite high that if you weren't looking and you weren't paying attention, and you were focused entirely on the implications of digital at work, that you forgot something pretty scary.

Have a think about the world your son currently lives in. It contains porn on tap, 24 hours a day, 7 days a week. Yes, yes, opt ins. Do you think a 16 year old boy is going to see that as an embarrassment? Nope. He's going to see it as a badge of honour. Blocks on phones can be got around - if your son has a Android phone he can just flatten the phone completely, install a ROM (a developers alternative Operating System) and merrily override any blocks or filters imposed by anyone. I haven't tried but I suspect there are similar for iPhones and Blackberries. What's the harm in that I hear you cry? Well actually plenty. Porn per se isn't the problem, necessarily, but go have a read of the kind of porn your son (or daughter; stop looking so horrified, it happens) is now watching. It's a wee bit different to the Playboy images you used to sneak out from your fathers stash isn't it? I find the section titled Slap Happy particularly interesting. Imagine someone thinking 'wouldn't it be fun/funny if' and the person on the receiving end was your daughter. Sickening thought, isn't it?

Then there's Snapchat. Send pictures of your intimate parts at will, endlessly, to anyone who's stupid enough to open an unidentified image from someone they know from school and keep lol'ing. I mean what's to stop them? In the past this behaviour would have been identified as flashing and would have resulted in a prosecution eventually had the behaviour persisted past police warnings and detentions. Now anyone can be a flasher. Anyone at all. And the police? At best oblivious, at worst walking away from a problem they have no idea how to monitor, no resources to keep up with and no one inside that culture to make judgement calls on when banter becomes abuse.

Chat Roulette, Tinder...I could go on. All of these computer delivery systems deliver something quickly and easily to anyone who is looking. A quick pic of some tits, an interaction with the person who owns the tits over text, through to a meeting to actually touch those tits in person - our young people these days are immersed in a world where you'd be forgiven for thinking sex is the only subject anyone thinks or talks about.

Except of course, it's always been the case that teenage boys have only one thing on their mind. Biologically, it's kind of inevitable. But in the past access to all of these things has not been possible. Young teenage men have had rules and edges to their fantasies, to their imaginations. Now we have made a world where anything they can possibly imagine can be made a reality on their phone - and who can blame them if they blur fantasy and reality, paid porn star with your daughter?

Their lives are invisible to you unless you ask. Unless you have difficult conversations with them about boundaries, about the difference between fantasy and reality.

So how does this relate to Gamergate?

I don't know for sure, but I reckon closely. I think Gamergate is about a lack of respect. I think it's about people who've either grown up or who are growing up in this world of instant gratification. I think it's about boys on 4chan who will type anything to get a reaction - and IRC logs relating to the recent harassment of yet another gamergate female developer strongly show this. It doesn't matter how far you're prepared to go - there will always be someone else who is prepared to go one further for the laughs and 'respect' that this gets from other teenage boys.

Yet I assume it actually is teenage boys. Perhaps it isn't. Perhaps instead it's grown men who we think should know better without ever quantifying what it was or when it was that we actually took the time to educate them so they did know better. Did we teach them at school that women should be treated equally, with respect and dignity and that if you wouldn't say it to your mother in public, you shouldn't be saying it to any other woman in public either? Did you teach your son or daughter about equality? Did you tell your daughter that she could be anything she wanted to be only to watch in horror as she decided to be a games developer? Is it okay that becoming a games developer will now be forever something which turns parents blood cold with horror instead of warm with pride?

No. It isn't. No it isn't. And no it is not.

So we've got a pretty little mess we've made for ourselves, and Gamergate is only the tip of this particularly messy iceberg. But sadly, every scandal, every firestorm has one thing in common.

Women. And the harassment and abuse thereof. So ask yourself this on Ada Lovelace day. What do video games, films, or web pages/apps/platforms look like with no women producing them? Because if you don't do something pretty sharpish, even if that is sitting your son or daughter down and having that chat, that is what you in a very small way will be responsible for.

As for Ada? Spinning in her grave.

Monday, 22 September 2014

One small click for man...

I've been thinking about activism, clicktavism, campaigning and polls. As usual, a series of fragmented occurences all collided together in the space of 5 days and my brain wouldn't stop making leaps. That my brain is finally in a state to make leaps is a cause for celebration in itself...

13 months ago, I could do all three Metro Su Doku's in the time it took me to get from home to work on the tube including changes, approximately 35-45 minutes. 12 months ago I couldn't do the simplest Su Doku. 13 months ago, I could do the giant Su Doku published every Saturday in The Times in well under the time posted. 12 months ago, I couldn't do one fifth of it in the time posted. I said that when I could do it within the time once again, I would know I was well enough to go back to work. What I didn't know a year ago but know now is that whilst mental quickness and fluidity is a good indicator of the minds wellness, other factors would come into play. Like my knee dislocating backwards and sideways, and ankles so weak I literally sprained my ankle in socks on the kitchen floor.

So with this as the background, and apologies if some of the words come out in the wrong order...

On Thursday 85% of Scotlands population, much much less of a population than the one contained within England and therefore a number far more impressive in some ways, voted on a referendum.  This required them to do something offline and in meatspace. As commentators flustered and flurried to try and get a handle on sentiment being expressed in the online world, the true headline making was happening in a truly old fashioned way - through marking a cross in a box.

On Friday, St Georges Square in Glasgow became a little of a flashpoint as those who were already looking for aggro seized on issue of the day and held it aloft as a reason to continue to be idiots.

On Saturday, the majority of Glasgow united, beneath Saltires and Pride flags to donate money to those less well off, and to express their distaste for the events of the previous evening.

Both of those things also happened offline. No donations to Just Giving pages for the Glaswegians and no online trolling for them.

Yesterday I spent 30 minutes answering questions on politics within a online survey presented to me through the Toluna service. For the first time in my entire life, I was asked questions on what I thought, about leaders, about parties and about politics. I gave the time gladly (it was quite a Liberal Democrat swayed survey and it asked a lot of questions about my opinion on their policies and how they might sway my vote or not) not because I am a Liberal Democrat supporter, but because they bothered to ask. No one, not a single person from any political party, has ever asked me how I intend to vote. I'd not tell them if they asked me face to face. But I will happily answer the questions when it's part of an anonymised online survey.

Today, I clicked Like on the Labour Party Facebook page.

I have grown up online. But I have also grown up offline. Inevitably this is so and I am no longer unuusal, not in the way I was 20 years ago. My politics have grown from complete disinterest to complete frustration and disbelief through to...

Now. Where I click Like on the Labour Party Facebook page. It was just a click. Well, a tap actually, I don't use mice any more. Outdated terminiology for an outdated tech? Etymology aside though, clicktavism is dismissed. It doesn't mean anything to click a button. It doesn't require any thought.

Except I've never clicked that Like button before. I chose to do it today. I knew about the existence of the Labour Party before today. I knew about the existence of Facebook today. But I only chose to action something today.

And honestly, it was the events of the previous 4 days which led to me tapping that button. A perfect storm, an alignment of planets...or just reality, which was a well considered, long considered, deeply thought through assessment of where this country is, where it isn't and where I want it to be. I don't want to change the world any more. I don't have the energy, or the brain, or the heart, or the fire right now and it's quite possible I never will. But instead of disengaging me, that's changed me, and I think for the better. I used to think that to change the world you needed to be alone. Now I think, and I'm afraid the Scottish people have taught me this over the past few days, I think we're better together. Not in terms of acountry, not in terms of an economy - my thoughts on thaat arenot for public broadcast I don't think.

But in terms of campagins, change, voice, noise, debate, discussion, learning, policy?

I don't want to be alone any more. I want to go and spend some time with people who I think might think and feel the same way I do. I don't know for sure. I'm not joining anything, I'm not paying anything, I'm not signing anything.

I'm just clicking Like on a Facebook page. But to me that one little action is as seizmic in its representation of a change of my attitude as the crosses in boxes which were ade last Thursday.

You see...we live in world where the smallest of actins make the loudest of noises. Click, click.

Wednesday, 10 September 2014

The world of grey

Writing about depression while I'm inside it is impossible. But I want to stand up. I want to be counted. So now that I feel sadness fleetingly, in measures of hours and not months, let me tell you about depression, from my view.

I don't have a black dog. I understand this pictorial terminology is helpful for other people. That's cool. But it's not my friend, this thing. I am told anxiety will become my friend because I can never fight it and to do so will only make it stronger. But fighting depression?

It's it bloody, this battle. And for me, lucky as I am in this autistic/Aspergers view of the world, I wear binary armour. I live. I breathe. I wake up every day. Not morning, mark that, but every day. Those things, these things, they are unarguable, infinite. This absolute is my armour and I hold it dear to me. This rigid thinking that I am told so often is a bad thing, in this case is good. The best. The thing that means that even when I am counting breathes, I am still counting.

But there is no dog. But there is a tunnel. It's dark in there, obviously. But it is other. Separate. Because the further most thing, to me, is the grey. Sometimes, still, in a world that is now colour, I am still shocked to a standstill by how colourful everything is. HD TV, the yellows and greens of lichen on stone walls, the bended broken bows of lightning struck dead tree trunks in their stripes of grey, greyer, greyest - even the greys are beautiful to behold.

Depression is not 'negative thoughts' for me. It is an absence of thought. To someone who, thinks at velocity, a constant stream of beautiful lovely data, images, sounds...my world when I am well is vivid, enhanced, soundtracked and in landscape. I love it. Depression takes it all away. And yes I know that there is an absence of people in this depiction and this is deliberate. Because 2 people kept me breathing too but this is not about that or them.

This is about the grey. It's about the persistent knowledge you are looking but not seeing. Listening but not hearing. It is to be deprived of the joy derived from input. Nothing fits. Nothing works. Sensation is irritating. Hugs are debilitating. Expectation is crippling. And I keep counting breathes.

They tell you, when you come into contact with mental health services that there is a number. It's a crisis number.  I know the team it goes to. I know what calling it means. I was told to only call it in an emergency but there was no explanation of what an emergency is for someone for whom suicide is {void}. Is it when I am counting breathing? Is it when my tummy hurts so bad I can't eat and I want to crawl out of my own skin and I don't know how to calm down and people don't calm me the same as neurotypical people find them calming and I'm screaming help inside my head but I'm mute?

In retrospect, yes. Yes that was when.

And there is the truth. This is what metal health care looks like on the ground. It isn't care. It's assessment and then you are put in the queue. If it were left to the NHS, I would still be in the queue for counselling which to date has lasted 13 months.

But it's okay. Isn't it. Because I am still breathing. Isn't it?