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.


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.


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