Thursday, 23 March 2017

No one but me.

Autism takes away.

But it gives. 6am. Crisp bite of the cold on my hands and neck. Rest of me warm under a big coat. Cup of tea clutched in my right hand, a counterpoint to the bite.

Chill out in my ears. Running water. Drift. Female vocals and she'll wind chimes. Transported. The sun is rising. Sky slowly changing from pink to orange with a backdrop of blue smeared with white clouds.

Meltdown reset. Meltdowns horrid while inside them. Weeping on the bathroom floor. Shivering and shaking, all control lost. Aware next door neighbour can hear me losing it. Not caring.

Ball of orange rising. Light changing around me. Inside the sunrise. Connected.

Intensity. Of appreciation. Of feeling. Cold and light caressed. Held safe.

All will be well. The sun will keep on rising. The blue will keep on coming. The beautiful sounds melting into my ears will keep on playing.

All will be well. Quiet. Serenity.

Sunday, 12 June 2016

Je suis désolé

Disclaimer: I know, Russia. But nevertheless, before last night there were other issues that were our fault. We could walk away. We could always walk away. We choose whether we stay and fight. We always choose.

Dear French lads in Nime,

I know not all of us is not a defence. But I also know you listened to my husband when he spoke to you last time about this. I hope you remember my husband this morning. I know you won't remember his name either, it was a long time ago. But I hope you remember he was British as you wade through the litany of news emerging from your sister town Marseilles this morning. 

Firstly, I want to say I am sorry. Sorry that you expected this of us. Sorry that you knew that this would be coming. Sorry that you probably were not in Marseille at all yesterday because you had more sense than to trust. You should be able to trust. You should be able to go to your bigger town next door and watch football because I can. I have that privilege. We appear to be determined to take that away from you. 

My husband ended up in that bar playing darts with you through a series of coincidences that you couldn't make up. We had booked my first ever holiday in bits. I'd always package holiday bought before. It was only my third proper holiday outside of the U.K.  I was nervous - had I booked everything correctly, had I planned everything properly. It turned out to be one of the best holidays we've ever had because of the kindness and friendliness and patience of the southern French people. We had stood on the edge of a massive Cirque, our mouths open in wonder. We'd walked past the coliseum in Nimes and through its columns and down its steps and marvelled at the engineering and the magnificence of the feat. We'd seen the flyers for bull fighting and discussed it - not something we wanted to see but understood the cultural important of it nevertheless. 

We'd stood on the ramparts of Carcassone cité and watched three thunderstorms approach from three different directions before arriving back in our hotel, having got lost in the empty old streets mazes, drowned and laughing and soaked to the skin. My school girl French had gone from 'wee' to 'way' for Oui - southern French subtly different from Northern, something school never even mentioned. 

We drove back to Nime to catch our flight home. We went to the hotel we thought we'd booked on hotel.com to find no booking. Thankfully the hotel had a room anyway. I felt a bit uncomfortable as the hotel had bars on our downstairs rooms windows and I was feeling exhausted so I stayed in bed reading while A, my husband, went off to find a bar and have a drink. 

That's where he found you lot. Or rather, where eventually you found him. 

He'd spotted the darts board, you see. And as a way to pass the time in a distant bar where no one else was paying him the blindest bit of notice, he knew no one and spoke little of the language, the darts board seemed a good move. Occupying. So he proceeded to start a game of round the clock with himself. 

You lot turned up. Normal French bunch of lads, somewhere in their 30's, just like A. Halting English asked if he wanted to play. He agreed. And so, in a small little Nime bar, something magical happened that he still remembers, and so do I. 

You were all terribly honest. Maybe that's why we remember it. You told us how your only experience of English people were football 'fans'. That those experiences had put you off our nationality for life. That you now avoided places and matches where English fans would be and that the mess we could cause and the language and attitude and chaos were a nightmare. You explained that my husband was the first English person they'd spoken to face to face for years. And you also explained that he wasn't what they were expecting at all. A didn't say, but I suspect for him to agree to play with you in a strange bar, that you seemed very similar to him. He doesn't watch football. He doesn't play football. He's an American Football fan and used to play as a kid. Being as how it basically appears to be chess on legs to me, that's appropriate. He told you this but you didn't judge l, not like perhaps some English lads would. Instead you told him that he'd changed your minds about English people, that they were realising that not all English people were like the ones they'd experienced directly through football. 

A explained about all his friends who were real football fans who went to football matches, drank beer, ate pies, and then left, drunkenly but peacefully. He explained that there were different ways to be an English football fan - despite not being one himself. He felt responsible and I think a little shocked and upset at what you perceived our entire country to be, from those disproportionate meetings you'd experienced. 

This morning, I want to say, I'm sorry. Once again we have taken Marseille away from you, with the help of some of your own countrymen and some Russians too by all accounts. In the same way you will say the Ultras don't represent you, please know these English men don't represent us either. We are, in general, a country quite a lot like my husband, football fan or no. Kind, thoughtful, darts or pool or some other pub game playing and would always buy you a round of drinks, just like my husband did. 

I hope you remember him. I want you to know he came back to the hotel that night and told me all this and I was mortified - as mortified and horrified as I am this morning. If he were writing this too he would add his 'Je suis désolé' to mine. 

As for us? We're coming back to France this year. Again. We sort of fell in love with your country and you a little. I hope you can see past our accents as you always do, patiently endure my attempts to speak your language badly as you always do, and we have a wonderful holiday as we always do. 

Yours,

A mortified Brit

Wednesday, 29 April 2015

The stick's not for decoration

I walk with a stick. It's not for decoration. But you'd be amazed how many people think it was.

I didn't always walk with a stick. I wasn't always incapable of walking up stairs using both my legs. When climbing stairs, my knee, ankle, and sometimes the bones in my feet didn't used to crack. I used to be able to wear sandals without my right toe trying to dislocate. I didn't used to know that a tin can on its side can put dislocated bones in the bottom of your left foot back in place. I didn't used to know the exact sequence of standing on tip toe whilst wriggling your ankle that would stop the randomly dislocated foot bones going into your ankle bone go back into place.

I didn't used to process my little finger dislocating and relocating again in seconds as 'stinging a bit'. I didn't used to have such screaming pain as the muscles in my palms contracted every morning that my finger dislocating as I half woke barely registered on the pain scale. My spine didn't used to crack, my neck didn't used to struggle to hold my head up. My left eyelid didn't used to sag worse and worse the tirder I got and I didn't used to have blurred vision like my toric contact lenses had shifted so they didn't correct my astigmatism even when I was wearing my glasses.

I didn;'t used to carry a letter from my GP explaining that I am autistic and my joints 'spontaneously dislocate' and in certain situations I needed a carer with me at all times. I didn't used to be unable to bend down for longer than a few seconds without fainting - or sometimes feel my heart rate race away after a period of sitting down, or it doing the same thing 20 minutes after I'd gone to bed leaving me feeling like the bed was falling away from underneath me. I didn't use to heal quite so bizarrely nor be covered in random bruises or broken capillaries. I didn't used to have screamingly blue veins up my arms and across my chest. I didn't used to have Reynauds so badly my entire hands go white, the skin puckering and rippling where the blood has disappeared, making them look like a corpses.

I didn't used to have to wear lipstick to cover my blue lips, or to make me not look so pale and sick. I didn't used to have to avoid shoes with a heel. I didn't used to have to psych myself up for the inevitable pain each morning as I stiffen up each night - each movement carefully measured and braced for, the final act of standing resulting in swearing. I didn't used to have to think before I stood up, both to make sure I didn't get dizzy and sit straight back down again, or that some bones had become misaligned whilst I was sitting so that standing pushed them out of joint. I didn't used to have to be careful putting shoes on in cases it dislocated my knee, or the bones in the top of my foot. My right lower rib didn't used to float, meaning it slides when I bend down when sat down, before sliding back when I resume an upright position.

I didn't used to react so badly to sticking plasters. They certainly didn't used to take all my skin with them when I pulled them off. I didn't used to have to be so careful of shampoos in case they rendered my scalp and itchy irritating mess. I didn't used to bump into things so much. I didn't used to sprain everything so easily, turning ankles in socks on our kitchen floor, or spraining an elbow just by sleeping. My little finger didn't used to stick out at a funny angle because I've now dislocated it so much it's not going back into its socket properly.

Life used to look very different. I didn't know I was 7 out of 9 on the hypermobility Beighton score. I didn't know I was autistic. I didn't know anything as it turns out, and life is very different. Not because I do know, knowing doesn't change the facts. All of the above are facts. Cold. Hard. Immoveable and inarguable with.

The following is how you make me feel about all this. You make me feel like a failure. Ashamed for struggling with all this. Ashamed to be ashamed that my illness is now on my face, writ large and obvious for all to see. Ashamed that I can no longer choose to leave the stick at home and pretend everything is okay. Ashamed that even though dislocating my finger stings a bit, that the pain from everything else is so unbearable in that shadow place between sleep and awake that I cry out with pain and I dream I'm crying out in pain and then I wake and I actually am. I am ashamed that there are days, rare, perhaps 2 or 3 in a month where all of this gets on top of me, and the brave face I put on to the world slips. I am the woman who after listening to the scraping of a scalpel inside her left arm for 10 minutes will go into the loos and cry alone rather than letting on for a second to the doctor and her assistant anything is wrong.

I am the girl you see with her eyes closed breathing slowly with a look of pure concentration on her face as she deals with the pain of another dislocation or another bone clicking back into place. I'm the girl who was on the train reading the newspaper at 90 degrees because her neck simply couldn't hold her neck up any longer. I am the girl you see getting off the train and waiting at the side of the platform with her case, waiting for all of you all to go by at your normal pace so she can bring up the rear and hold no one up.

I am considerate. I am controlled. I am proud. So very proud. And I don't let any of you see.

Shall I tell you what this gains me?

Comments. Oh the comments. At a convention this weekend we got told by a volunteer she'd kill for a wheelchair right now.

The assistance buggy I was in on Sunday night being taken to the train at Euston acquired a joyrider 'just going for a joyride' he said.

The chap, also at the convention I went to asking me to sit on a chair, with rows and rows of people stood behind me, on a major thoroughfare.

The comment by an attendee that 'I don't understand why they came, they should have know it would be hard'.

The comment by a friend 'make sure the whinging is far, far outweighed by the good days'.

None of you know. None of you. So here is me telling you. You see my stick and you see someone 'not quite disabled', I'm sure. I'd be in a chair if I was actualy disabled, you think. Since you're obviously not, suck it up. If you think it's going to hurt or be difficult, stay at home, shut up, don't moan, don't whine.

I'm sick of being silent. Being silent makes you invisible. It sucks the life out of you, actually. Suffer quietly, if you're going to suffer at all. Don't make a fuss. Don't hold people to account for what they deny you, their ignorance and their misunderstanding. Well isn't that terribly British of us, to expect people to have a stiff upper lip, even in the face of a body which is slowly falling apart. Don't say anything, deal with it on your own. Don't mess up our timelines and our lives with your pain and suffering, we're not interested.

Well. Some of us, the evidently weak and pathetic, occasionally we need support. We don't have perfect families and perfect friendship groups. We can't just call someone and ask someone for coffee beacause we don't have those kind of friends on the end of the phone. The web is our friend, it contains our friends, it contains our support. Connecting with other people who understand is all I've got. Sod sympathy, I don't want you sympathy, sympathy doesn't make the pain go away. The only thing that is making this manageable is knowing I am not alone. That there are people who care - to post cute pictures, to send hugs, in notable instances to send books containing explanations and wisdom. It's more than the NHS has managed to give me so far.

And yes, I am angry. Angry at myself, angry for staying silent and being so terribly British about this. I am hurting. I am suffering. And every single day I put on a brave face. I make the doctors job 'so much easier' by taking the weight off her. I get the assistance guy at Euston thanking me for being a decent human being and having the same ethics and moral codes as he does. I get volunteers telling me 'last bit to go hon' as I re-enter the convention because I want to be there and I'm not going to let this shit beat me, not going to let this stop me from having fun.

I am autistic, my joints spontaneously dislocate, I am in chronic pain every second of every hour of every day, even when I am sleeping, I sometimes have ridiculous levels of anxiety.

I make people laugh, I am happy and shiny at them. I am a good friend, a half decent not auntie, loyal, fierce and a warrior.

You see every single day I could choose not to get out of bed. And I do. And sometimes, I go and do awesome things that take every ounce of strength and determination I have and I do it anyway. So don't you dare tell me I quit. Don't you dare tell me I can try harder. Don't you dare tell me I shouldn't have come if I knew it was going to be this hard.

I am a human being. I have some challenges. And I am a warrior.

Thursday, 8 January 2015

We need to talk about obesity

It's that time of year again. The one where Channel 4 and Five get bored and start airing programmes which veer too far across the line from education into mockery and freak show.

Yep, I'm  talking about the all the fat programmes which seem to suddenly have hit the air. In fact it's almost so co-ordinated that the cynic in me does idly wonder if it's a quietly manipulative co-ordinated strategy emanating from the 'Behaviour Change' unit in the Cabinet Office.

So here's the other side. This post is entirely driven by the seering honesty of Tom Pollock's which you should read if you haven't though I warn for triggers if you struggle for whatever reason with details of an Eating Disorder.

Yep. A bloke wrote a post about his eating disorder. And he didn't pull any punches. What's hit me so hard in the stomach about this post? I've met the bloke in question. Briefly. And because I had at that point read the first part of his most excellent young adult aimed book trilogy, I gibbered, made a complete tit of myself and ran away rather quickly.

I looked at him and saw successful. Together. Confident. Like Tigger bouncing all over the sci fi/fantasy con I was at - every time I saw him he was the life and soul.

And then I read that post and I realised I'm still pretending. And I think it's about time we all stopped because it's not doing any of us any favours. Some of us are really good at acting. Acting fine, acting confident - essentially being performing seals and then crawling home after a social occasion feeling scrubbed from the inside out. And yet still we try. Still we perform. Because we don't want anyone to see.

So see me. I've spent almost all of my 20's and 30's trying to be invisible. Shall I tell you the best way to be invisible in this world? Be fat. It's ace. No really. Apart from the abuse shouted out of windows, or the tuts at your food basket in the supermarket, no one notices you exist. Barmen see straight through you, bus drivers wont meet your eyes, and doctors act like they'd rather do anything else in the world than look at you. Ask them about something which requires and examination and you can tell you're the last thing on earth they'd like to touch. But you're invisible.

This means you don't get whistled at, which used to make my shoulders tense immediately and me speed up. You don't get beeped at when you've made the mistake of wearing something out of the house that looked fine in front of the mirror but maybe that hemline is a little shorter than really it should be. Like above your knee. By an inch. You don't get people shoving their hands up your skirts on the underground - thank god for tights. You don't get men encroaching on your space on underground trains by slowly leaning further and further over to look down your top. You don't get taxi drivers offering to do creepy uncomfortable things for a free ride home in the cab. You don't get constantly harassed on dance floors when all you want to do is close your eyes and disappear into the music. You don't get asked whether you've got any drugs every 10 minutes either. You don't get asked where your top is from in bathrooms by women you've never met, but you also don't get asked for your phone number as you leave the same pub and then followed to the tube station.

I could go on. And on. And on and on and on and on. I was, when the right weight, rivalling Marilyn Monroe for her measurements. There is no 'subtle' way to dress when your tits are sticking out as much as your ass and your waist is disappearing in the middle. Shirts gape. I couldn't afford decent tailoring. Tunics which took the eye away from top and down to waist didn't exist. Skirts were either short or in M & S. There wasn't the internet where you could find your style and stick to it. You shopped on the high street or you didn't damn well shop at all.

I didn't know how to deal with it all. Moving to London the first time when I was 21 was by turns the best thing I ever did but also the worst. I went from a sleep provincial city where men were mostly respectful and boundary respecting to the insanity of a capital city. And I just couldn't deal with all the attention, got myself in some very stupid unpredictable situations, explored some boundaries which were perhaps better left unexplored and generally did not do my mental health and sense of self any good at all.

I'd never eaten a take away until I moved to London. A boyfriend who was averse to cooking and a lot of take aways later I noticed the problems stopped. All of them. And my boyfriend didn't seem to mind I was getting a little larger - he didn't have to feel inferior and paranoid every single time another man paid me any attention because it stopped. Yes, that's harsh, but yes, there's history and no, you don't need to know it.

I started to use weight as a defense mechanism. A way of becoming invisible. I loved being invisible. And I didn't know the damage I could potentially be doing to my body by being overweight because this was the late 90's, early 00's and I was severely in the minority in being overweight. Shops didn't stock sizes over 18. Seriously. None of them. There was Evans and that was it. So I shopped in Evans and parked my love of clothes because the difficulty of choosing what was safe to wear had been removed from me - now I only had to think about what fitted. Much simpler, no?

I have, essentially, worn a fat suit as a cloak of invisibility for somewhere around 15 years.

I don't have diabetes. No heart problems. No blood pressure problems. No cholesterol problems. Systemically I have problems, but they're genetic. X-rays on my knees reveal perfect knees for an approaching 40 year old. Yeah, sorry, I know I don't look it. I have no wrinkles. Whole other blog post. What I do have is hypermobility. And my weight doesn't help with the dislocations and so I've lost 8 inches around my bra line and 3 inches from my waist. And probably that's why I feel comfortable writing this down. Moral high ground. Perhaps.

I've had to use some serious visualisation to do that. Because every time I see new bones I haven't see for years I panic. Every time I feel my hip bone I panic. I don't know what else to call it. So I consciously talk myself through this - I'm a different person, the world is safer, I am in control of my world, I am not equipped to punch people in the face if they step over my boundaries after I've asked them not to. I am in control.

Food is about control. Ultimately. It's about emotion too. It fills the void of fear in your stomach. Anxiety lives in my tummy. Every time I talk about anxiety to my counsellor, where does my hand go? Straight to my tummy. Food comforts. Food prompts the release of adrenaline. Food hides. Food feeds.

For those of you for whom food is just fuel with the occasional treat, I appreciate this language is completely alien to you. But I'm afraid this is what food is for millions of us. It's a battle as well, it's evil, something that waits to trip you up, consumes you with lust and greed, then spits you out feeling sicker and more shameful than you could ever imagine feeling if you haven't felt it.

Once you let food take control, once it becomes about control even, you've lost. And some days it feels like I'll never win this battle. But mostly, now, I know what my relationship with food is. It's something to be managed. The same way my mental health is something to be managed. I must be conscious of it. I cannot be thoughtless. Not ever.

But what I want more than anything for you to understand, is that the food is tied to my mental health. I feel well at the moment. It's only been for the last week, maybe two. I'm not better. But I want you to understand that when you look at me, when you see my weight, you see a visual representation of something that for others manifests far more privately and less visibly. You are seeing my battle with the world. My logic makes complete sense to me. Made complete sense to me. It wasn't until I went to counselling and got called on that logic that I realised how flipping ludicrous it was. But my weight wasn't the reason I was in counselling. Being diagnosed with Aspergers was. And yet I found it so helpful, combined with seeing a nutritionist as part of the Healthy Lifestyles team I self referred to that I so totally don't understand why tackling obesity involves counelling as a default.

I get some people are fat cos lack of education. I get some are fat cos they just didn't pay enough attention. Or they were busy. Or they just suddenly stopped exercising and it piled on. But there is a sub set of us for whom our weight is a visible and physical manifestation of mental health issues. Or self esteem issues. And whilst I get that some of you have no empathy for 'issues' the simple fact is, you don't get to do that. You don't get to be dismissive, because this is a very real problem affecting a very real NHS, potentially taking resources away from treating your cancer. You don't get the luxury of not thinking about this any more. It's a problem, and looking away from it, or worse laughing at it, is just not solving the problem.

So. We really need to talk about obesity. Honestly. Openly. Freely and with no holds barred. I have no health problems as a direct result of my obesity. I've got a set of bollocks genetics which I can do nothing about which obesity exacerbates. So you know what, I'm gonna stand up. Yes with the help of a stick but this is me standing up. This is me saying, this is an issue and can we please please please sort this out now?

Otherwise, people are going to start dying in their thousands, not in their tens and we really will have a problem on our hands.

Wednesday, 13 August 2014

Mark a space, light a candle, make a wish

On somewhere around the 1st September 1995, I packed up my belongings into my then boyfriends Volvo Estate and drove to start a new life in Plymouth where I attended university for two years.

On somewhere around the 1st September 1995, I said a very uncomfortable and confused goodbye to my father, and I've never seen him again.

On 7th August 2014 I sat with a friend outside the Starbucks in Villiers Street outside Embankment tube station. On arriving in the coffee shop we were informed hot drinks only. Binary me made to leave. My friend reminded me of the existence of cold drinks and we stayed. I ordered a white chocolate cookie and it was the good kind of cookie, the kind which folds before it breaks into pieces. At times I forgot it existed, at times it was a helpful prop. Mostly it tasted delicious and isn't it funny how something as simple as a cookie can be so many things to one person?

The chair tilted slightly but it didn't bother me the way it normally does. The sound of London in all its chaotic messy noise passing down the pedestrianised street behind me before pouring like milk from a jugs spout into the mouth of the tube station was distant.

Some things are important. And some things are more important than that word itself, even. This was that. We'd not spoken for years, so many I think I've lost track and the not talking this time was not intentional, only complicated and so never met head on but instead shied away from in fear of only making a thing worse, and not better. But this time, in this moment, I knew I had the emotional clarity to stay and listen no matter what the words, to accept them, understand them, but also finally the explanations of myself which I could share too. Finally, I had something to bring to the table.

It's funny the way things work. I have been worried, these past few months. Well I've been worried for a year, and far more than worried but aside from that, I had been worried. I knew something was slowly appearing through the fog that is the future and it was something with massive headlights, a terrifyingly high pitched horn and wheels the size of a wendy house.

Death.

It doesn't matter whose. It doesn't matter at all. It's not mine. It's not mine to grieve. But nevertheless it is a thing around which empathy and the lack of it becomes a major major issue. Or rather a lack of empathy for things I've never experienced myself. Which is actually the issue. I can recall an emotion I've felt, or an emotion I've experienced within a certain situation with a clarity that is almost piercing. Oftentimes, piercing is actually a good word, which is how my heart feels when unexpectedly assailed by recall. But anyway.

Death is coming. And I explained to my friend, this person who knows me better than my own mother (which admittedly wouldn't be difficult, but then I think I'm growing to understand and let that go too) that I was afraid. That I hadn't experienced it.

She looked at me oddly. I think it was confusion. Perhaps slight shock? I've known her long and through thick and thin and still I struggle to read her facial expressions, what hope is there for acquaintances? But she does the thing so few people have the patience to do.

She explains the art of grieving.

I can't tell you what she said. It's private. I can only tell you about where it led me and perhaps the things she said which are not an invasion of her mind or her zen, her way of being.  She said that there are spaces, and that death and space are perhaps the same thing, I think. That's what I took, that's what resonated. That perhaps just because there is no body, this does not negate the feeling of grief, of bereft.

On the 28th February 2015 I will marry the man I love. No one will give me away. I don't believe in the giving, but I think I do believe very much in the tradition. Tradition is where neurotypicals and neurodiverse folk cross. Tradition is the thing you wrap around you on a cold winters day to ward the blackness away. It's the reassuring sound of laughter in an empty space. But it is also the thing which seeps into the spaces and fills them, when your heart is sore and weary.

No one will make a toast to the bridesmaids and the bride. I do believe in politeness, but not for politeness sake. But this is not politeness. This is a thank you, an important one. Any bridesmaid of mine, I think we all know, requires a set of special lockpicking tools, the tools which will make my brain quiet, the one which will distract, the one which will occupy, and the one which will misdirect.

I am blessed, actually, to know at least three people who have this unique set of tools. And the joy and gladness this gives me requires that actually, bridesmaids and close friends will deserve and receive a thank you. And in the process of writing this, I think that will come from me. And quite rightly.

But it wont come from the man I said goodbye to almost 20 years ago.

I didn't think I knew about death. I don't. But I do know about grief. I know about the sadness and the space. I know about the wistfulness and the deep deep ache. I know about the wishing for different even though it's not possible and never will be. Sometimes there is no going back, no good in doing so, nothing to be gained, only lost. It is possible for a man to do such damage that existing even in the same country becomes difficult, but it is also possible to grieve, deeply and fiercely and quietly and privately for many many years for the man you lost before he become something else.

My friend talked. And I listened. And at the end I knew.

Space unmarked is an open wound. Space unacknowledged is an open wound. Space ignored will never heal. I have healed, and I have scabbed, but I have not scarred for to scar is I think to finally let go.

So I choose to mark a space. I will work around things, through things, over and under things on my wedding day. But I will also mark a space. I will place a nod, to a man who shaped me, and who I think loved me deeply before the desert winds came and blew his mind away. Love is a strange and difficult thing for me. People are a strange and difficult thing. But on a busy street in London, something mended.

Thank you lady. It seems that as good as I have got, there are still things I need to write rather than verbalise. The words be brave, be strong span through my head all the way to Heathrow. You are both. Thank you.

Tuesday, 12 August 2014

Nine Worlds 2014 - How to do accessibility

Hello world.

I'm not going to do a linear review. My brain doesn't work in linear ways. If you want more context for the way my mind does work. reading this might help. Otherwise, the long and short of it is I have Autism Spectrum Disorder (Aspergers), depression, anxiety and a right leg which likes to go numb combined with two bulging spine disks and a hyperextending spine, I suspect among many things.

So why did I think going to a con for 4 days was a good idea? Because I contributed to the kickstarter and attended last year, of course. The addition this year of an access co-ordinator who very obviously had more than half a clue also might have helped persuade me. So I think we'll start there.

How to do accessibility without 'doing accessibility'

 An accessibility policy with added co-ordinator is of course a good place to start. Obvious even. Until you realise I can't go to San Diego Comic Con and will never be going to SDCC as long as their accessibility 'section' reads 'come and speak to your desk we'll see if we can help you'. Sorry SDCC, not good enough. People are flying thousands of miles to come attend your event - we might be able to help you, but we might not isn't good enough.

Yep, the biggest con in the world has a lot to learn from the most inclusive con in the world. Ah, you say, but that's a bold statement.

So here's the thing. Normal accessibility is about wheelchairs. And it feels a little bit like that's where it ends for most people when thinking about how accessible their event is. Now wheelchair accessibility is important, and I need to write a post about the utter despair of bad design that some wheelchairs are, but they're the beginning. When it comes to a big event in a big hotel with events, panels and talks in something like 30+ spaces, there's a lot of people who unless their accessibility needs are met, can't come.

Nine Worlds know this. Their initial manifesto hinged quite strongly around a product which was accessible to all, and was a safe space. It's why I bought tickets for something I'd never heard of, with no idea of who would be attending. So how are they doing?

From my perspective, fantastically well. I arrived at the desk and tickets were found and sorted lighting fast. Everything was clearly labelled around the venue so finding everything was easy. Some sessions ran out of chairs (and we'll come to that in a bit) but I only needed to take advantage of the 'priority seating' once. Most sessions were in exactly the right sized room for the amount of people who wanted to attend leading to few needing to sit on the floor and potentially block exit routes for wobbly/wheeled people.

Sessions in the programme were mostly marked and described well, meaning I didn't spend energy leaving sessions midway through bored to tears. I never felt claustrophobic in any of the spaces except in the winding corridors on the fourth floor. Not the organisers fault. The map was clear and easy to read (for me) so I didn't worry about occasionally splitting up from my partner and then finding him again. I never used the quiet rooms because I simply sat outside when I was too tired to do sessions and chatted in small groups. I never used my communications clip though I had a red one in my handbag all weekend. I never felt like I was holding people up being slow climbing down stairs, no one tutted, muttered or certainly audibly expressed frustration.

I didn't really interact with the staff except one bar person who was lovely and didn't seem phased by me at all. The atrium was painful and echoey a lot of the time so I didn't spend any time there during the sessions crossing over and made sure I did use it when it was quieter as it was a beautiful light space. There were hidden pockets and chairs and sofas scattered helpfully through the hotel for those 'I've completely run out of steam' moments. Food and drink were expensive but they quality of both meant I resented neither. Water was available widely and freely. Sudden noises, or changes were minimal, raucousness something I only came across once, and only once did I need to leave a session because I just simply couldn't cope with being there any longer.

This was the first con I spoke to someone I didn't arrive knowing who wasn't 'staff'. For me that's a massive massive thing. I also asked a few questions of panelists and though meeting with mixed responses, I was never made to feel stupid, only that I could have phrased something more carefully and it would have helped had I been less nervous of actually asking the question.

These two things are huge for me. My partner of 10 years commented on both, because we both know they're not things I'd ever do if I didn't feel massively comfortable. For me, this is proof that Nine Worlds have created something magical, rare and worth fighting for and protecting. I found my voice again after losing it for a year, found a little independence, a little bravery, and a lot of strength. I can't thank the team of volunteers enough for what this weekend has given me in terms of affirmation, empowerment, warmth, kindness and patience. I suspect you only see the problems during the weekend. It feels so important to me to explain clearly what you're hard work resulted in for others.

There were some small problems however.

People don't like it when they're made to feel stupid

I knew Just a moment would be very busy. It's always very busy. It's become a con staple when Paul Cornell is present because Paul Cornell is frankly excellent at this - dry, sarky and enormously intelligent. We arrived a little later than planned to a room we had not been in before, therefore we had no idea of its size. It didn't look like too many people in front of us so I assumed seating wouldn't be an issue. Wrong.

A kind lady saw me looking hesitantly at the floor and offered me my seat. I couldn't accept because it would have been wrong to. She'd arrived in good time, and queued for it. I hadn't, mostly because I was exhausted and struggling a lot, but that wasn't her problem. I saw carefully on the floor with my back against a pillar and explained that at the end they might need to step over me because I wouldn't be able to feel my leg for a bit. This was the point where I realised I was a fire hazard.

Paul Cornell spotted there was a very full room and pointed out that the front row was for 'priority seating' which is how it is referenced both in the Nine Worlds programme given out to everyone, on the website and on tube trains and buses as well. One lady as she passed me standing up said 'apparently it's for special people'. I replied 'no it's for broken people' and she replied with something else equally unpleasant but I didn't catch and my partner can't remember. 

4 chairs were free at the front. I sat in one at the end, my partner sat to the side of my on the floor. I shook for 30 minutes and tried tapping rather than rocking which was what I really wanted to do but didn't feel I could do because I didn't want people staring at me any more, frankly. The 3 chairs to my right stayed free until one at a time, two more people entered the room, asked if they were free, I explained they were for broken people should they need them and the sat in them.

The chairs didn't have labels on. These people had missed Paul Cornell's explanation. I ended up gatekeeping and being forced to interact while in a state where I'd really rather have been in a quiet corner rocking to myself. 

The panel was awesome. My right leg lost all sensation during it despite lots of shifting around. I managed to exit the room before it collapsed completely and I had to stand for 5 minutes holding onto a wall to stop me falling over. 

To summarise, and as I fed back to the lovely Access co-ordinator when I'd finally stopped hurting about it all so much was, people don't like it when they're made to feel stupid. That woman said what she did because she felt like she'd done something stupid. She hadn't. There should have been labels on the chair, stuck to the chair so they couldn't be removed or lost. They weren't. After explaining this to the Access co-ordinator all front row seats had priority seating labels on them after this point. 

When is a lift not a lift?

When you need a key card to operate it and  you're not staying in the hotel because you can't afford £150 plus a night. It got sorted, at some point. But I didn't know what that point was. 

I can't role play

I signed up for the Sherlock scavenger hunt because I am a complete Sherlock fangirl. I thought it would be a scavenger hunt, it said it would be in the programme. It also said it was a rerun of a game at a picnic but having not attended the picnic I didn't know what that meant. So I assumed it was a thing where you went around on your own or maybe in pairs looking for clues and solving riddles.

It actually involved teams of 5-9, each of whom picked a card and the card would tell you whether you were a detective or a mole, there being one mole per team. Guess who was the mole? Me. Now there's been much discussion of whether autistic people can lie or not. I can but I feel massively uncomfortable doing it, it consumes massive amounts of processing power and I associate it with some very bad situations I've been in recently. Deception, which is what this actually was, consciously deceiving people, is something I don't like doing. I didn't want to do it. So I swapped cards with my partner. Thus ruining the dynamics completely of the game.

This led to horrid. The rest of the team I think picked up that there was something odd going on and didn't include us really in the clue solving bit - we went looking for clues and I found none because I of course avoided all the places where people and busy and noise were and looked in the quiet spaces. But of course that's not where the clues were hidden. So I assume the rest of the team also assumed we weren't trying or contributing.

It was a mess. The kind of mess I don't have the social skills or social understanding to deal with so I just withdrew. It was the longest 2 and 1/4 hours of the entire weekend and I have never been so glad for something to be over. I got in a proper muddle about how I felt and the emotions it was making me feel, being spectacularly bad at identifying anything more complex than happy or sad and yeah.

Ultimately I felt like my monkey had ruined other peoples fun. 

However, even in this there is such good. I asked Nine Worlds Access and another chap at the con who was feeding back on autism related stuff if I was being crap. Both were kind and lovely and then someone who had helped adapt the game for the con joined the conversation on Twitter and was lovely about it too and something which had felt tight and coiled and furled unravelled. I have absolutely no doubt that next year there will be things on the programme warning of social, teamwork or role playing being required. And you know, if I'd not felt comfortable raising it, I wouldn't and in the past I haven't bothered to say anything when in these situations. Again it speaks volumes about the inclusive nature of this event that I do feel comfortable writing this, explaining this.

Summary

Nine Worlds are venturing into an area of accessibility others mainstream cons don't reach. They were conducting themselves with transparency, patience and kindness. Some things went wrong. Every time I've raised those things I've been met with 'can we fix this, how do we fix this, we can fix this'. I believe that these things will be fixed if possible and reasonable, and wont be if they are not. I love Nine Worlds very very very much and we have bought tickets for next year already. People on my Twitter stream have said they will come to, based on the positive tweets I have sent and I have no fear at all that they will regret it. Many many larger cons could learn from the bubbling laughing enthusiastic joy Nine Worlds creates. I hope that somewhere, somehow, I contributed to that in opening up, being brave, talking in the clear and always suggesting fixes where I could think of them. It would make me very sad to think that I'd not tried in the right way or hard enough.

Thank you Nine Worlds. For 4 days I did not feel like a freakgirl. xxx

Thursday, 10 July 2014

Fat is the last bastion of British rudeness

Last September I weighed 3 stone less than I do now. I was a size 20. I am now a size 24/26. So I reckon I'm qualified to write the following. I'm not a nutritionist. I am not a dietitian. I am not anything except an invisible member of the obesity corps - the faceless and often headless mass of wobbling flesh you all seem to find so disgusting.

Yet I say I am invisible. I am not. I wish so desperately I was. Invisibility is the thing I wish for more than anything. Invisibility is mind space that I don't seem to be allowed the luxury of through the fact that I am fat.

I've wanted to write this for so long. I didn't because people told me 'don't be famous for being fat, there are better things for being famous for' and others told me 'yeah we like your writing but less of that fat stuff' (I'm paraphrasing the latter but it's the message I received). So what changed?

I went to France. Let me tell you what did not happened, literally the second I crossed the channel.

  • No staring 
  • No doubletakes
  • No shouts out of cars
  • No comments muttered under breath about 'fat bitches'
  • No staring into my food trolley in the supermarkets and tutting
Shall I tell you what happened?

I lost weight.

No, really, I did. And actually I lied, there were some comments. They were made by a pair of old British people sat outside their caravan under their awning. One comment was on the Tuesday when my back collapsed on me a bit and I had to resort to using my Leki pole to walk. 'Oh now she's using a stick' he shouted back to his wife. The next day, when I went past on my mountain bike, there was silence. Lots and lots of really pointed staring and an open mouth you could have driven the channel tunnel through - but there was silence. 

Those moments were the only moments the entire time I was in France where I remembered I was fat and therefore fair game. Because let me tell you - when you're fat you're fair game. You don't have any privacy - in changing rooms girls peer around the edges of curtains to catch a glimpse of the fat girl. In restaurants, people stop talking to hear what you're ordering. In supermarkets, I have genuinely had people stare into my basket and tut. Do you know what I had the audacity to buy? A potato and salmon salad at a total of 450 calories for dinner. I get asked who ate the pies very loudly when I go out on my bike, and the garage workers at the bottom of my hill feel it's okay to shout 'hey <name> it's that fat bird on a bike I told you about last week'.

So here's the thing. All of this constant fattist noise stops and I lose weight. The same thing happened when I went to Florida two years ago where fattist comments are noticeable in their non existence too. Or maybe I'm not fat enough for Americans to notice - that's certainly a possibility.

Am I blaming everyone else for me being fat?

No.

I'm telling you, that you, yes you, are not helping. There are very few fat people who do not know they are fat. The mirror tells them every god damn day. It's not something you can avoid discovering about yourself, as much as you might want to - and we'll come back to that later. Instead, we get all of you weighing in on us, reminding us, telling us, holding our fatness right up in front of our noses all day every day too. Some of us, we could outrun you, out ride you, out step you, but it doesn't matter to you, we're fat and therefore we're less than human.

That's the attitude I'm blaming. Less than human. Take smoking for example. Another thing that you arguably 'choose' to do. Now I'm not saying most people choose to be fat, that would be dumb (though it was a choice I made for reasons I am not prepared to disclose but is strongly associated to the word invisible) but it's a useful analogy. Is it your job, or your place, to walk up to every single person who is smoking, pointedly cough in their face, and then walk off talking about how stupid that person is and how they're taking up precious NHS time and money?

Would you actually do that?

No. You would not. You just wouldn't. Instead you walk through the cloud of smoke expelled by the smokers by the door, say nothing, think no more of it and carry on with your conversations. So why do you point so much audible anger at fat people? Why do you think it's okay? Why is it not the same thing as smoking? We know food is bad for us (again arguable, we'll come back to this) we still eat it. The smokers know smoking is bad for them, they still do it.

What exactly is the difference here?

You don't think sugar is addictive to some people? You seriously think that there is a large amount of large people in this country who are thinking 'yay I'm fat woohoo?'

The problem here is this. You are not qualified to make a decision about whether the person in front of you is fat because one of the following reasons:

  • Steroids used to treat cancer - yep there's a particular person I'm thinking of who since being diagnosed with brain cancer has doubled in size.
  • Steroids used to treat bowel disease such as Crohns. I know two people with Crohns and I've seen pictures of them mid flare. It's not pretty. They're fat. 
  • Endocrine problems. Yes I know everyone blames them and they're often not to blame but that doesn't mean no one has these problems.
  • Disability. Chicken and egg problem this but I can speak from personal experience that being disabled in whatever way that might be has a serious impact on your weight.
  • Drugs that are not steroids but might be anything from those which treat endocrine problems to anti-psychotics. My GP shamefacedly admitted to me on my last visit she knew exactly why I'd put the 3 stone I'd lost back on again.
  • Lack of education. As in, genuinely no idea about calories in vs calories out. It's possible, hands up who knows what kids are being taught about basic nutrition in schools right now?
  • Emotional distress, grief, loss, bereavement, trauma. Emotional eating is a thing. 
In all of those situations, your comments on their eating or not isn't helpful. In at least...no actually, all of those situations, your comments are at best unhelpful and at worst life threatening. Think I'm exaggerating? Imagine being a svelte 16 year old at school, developing Crohns, putting on 3 stone due to the medication and putting up with the shit currently in the media aimed at fat people. Do you think she would be tempted to stop taking the medicine that is saving her life? Do you want to be the person responsible for that?

I get that it's a complete lack of understanding of the severity of potential outcomes as a result of this bloody constant negative narrative against fat people, but answer me this? Why is it that other countries manage to not be engaged in a near constant negative stream of words at us? Why does no one bat an eye in France?

Is it because we have become, as a nation, utterly obsessed with looks? That we really don't believe any more it's what's inside that counts? I think it is. I think it's also a symptom of something much worse - of cruelty. There are groups of people within the UK who seem to enjoy inflicting misery on others. They can't legally inflict that on black people or women or the disabled (arguable again) any more so they inflict it with glee on the last group of people who frankly are probably in no place to defend themselves. I mean what is someone on steroids supposed to shout back to the 'who ate all the pies?' comment exactly? 'Fuck off I've got cancer' just isn't the done thing and I can almost guarantee that the person doing the shouting is a whole hell of a lot more rude than the person they're shouting at.

You see, being fat, no matter what the reason is shit. I enjoyed life at size 20 a million times more than I am right now. I hate being fat. In the space of less than a year I have had first hand experience of how people treat you differently when you're fat. They don't open doors for you, they don't let you out of the lift first, they don't smile when you arrive at their check out and they make it really clear in department stores that they don't want you in their changing rooms. You get your items checked a whole lot more for hidden shoplifting in supermarkets like Tesco and you get followed a lot more in places like Primark by security guards. Believe me when I tell you the only thing that changed in those 10 or so months was my weight. It's shit. And it's an attitude which all the articles in the media do nothing but encourage. Every time you print something saying I'm lazy and should go on a diet, the incidents get worse. And guess what happens?

I don't lose weight. 

The trick to losing weight it turns out, is being happy. And I am not happy when you are all staring at me and judging me. I am happy when I am left alone to work out in my head for myself all alone, that yes I am overweight, yes this is too far and yes I need to do something about it, and then work out an attack plan that solves the problem.

I am not alone in this. Lots of women in particular say that as soon as they accept themselves at the weight they are, they start to lose weight.

So actually, it turns out, I am blaming the media and all of you for my weight. Or rather, I'm blaming you for the process of accepting myself as I am, accepting I am beautiful, as I am, and accepting that I could be better if I were smaller taking way too long.

It's your fault. You are part of the problem. Unfortunately, no one cares about us stupid ugly fat people to do anything about it, so carry on. And watch the problem, pun intended, get bigger and bigger and bigger.