Tic Tic, Tick Tock

Yesterday was BADD – Blogging Against Disablism Day.  I’m running late.

I remember the first time I searched for people tweeting about Tourettes. One of my friends on twitter had searched for other people talking about a diagnosis of hers – I don’t remember what, exactly – but could only find disablist misuses of the term. Rightly, she was upset. I decided to search for Tourettes, even though I knew all I would find was conflation of it with swear words.

This didn’t happen. At the time I searched, only about half the tweets I found were disablist. The rest were from people who genuinely have Tourettes, or from people supporting us. I was astounded, but only for a few minutes. I had found the word Tourettes difficult to spell, and it certainly wasn’t in my spell checker. This is a word that I speak at least daily, yet I had seen it written so rarely I was stumped. Other people – the people who make jokes that make me cringe, the people who buy books like “Pets With Tourettes”, will be even less likely to be able to spell it.

Before I was diagnosed, I never thought I could have Tourettes, let alone spell it. Everyone thinks they know what it is because we’ve all heard the jokes. I’d never read an article about it, because everyone knows about it, don’t they? The amount of people who haven’t understood the word “tic” when I’ve been explaining how Tourettes affects me has stopped surprising me. I didn’t know that word 5 years ago.

While some diagnoses are still only in the public consciousness as punchlines, there will be plenty of people whose lives are nothing like what crosses people’s minds when they attempt to explain. I am trying to read as much as I can about folks’ own experiences of disability, but I know that there are going to be some things I think I know that are actually completely wrong.

Because of our disablist society, I didn’t know what Tourettes was – so I didn’t know who I was. With all the different disabilities that are misrepresented by society, I’m not the only one.

Fictional Days

Some days are fictional days.

The last thing you remember is that you were climbing out the window to replace the flag, and then – you’re here. Duvets. Pillows. It’s not real, somehow: it claims to be, but it doesn’t feel the same. You’ve seen beyond it, onto the blank page.

This is your world. It is also new, like it was created from someone else’s memories. The world has so much detail today, and there is joy in everything you notice. Why were you brought here? You don’t know. You don’t feel confined – you have a freedom within you. You could do anything, and anything could happen here.

You think so many thoughts they don’t all fit in your consciousness at once. They end up cycling, round and round. You reach for the words you had, and they vanish under your fingers.

Too many fictional days lead to problems. You become more worried by Daleks than by the cars as you cross the street. Interactions with the normal are unimportant. Nothing has consequences, because everything will proceed according to story whatever you do.

If the joy falls out, that too is a problem. You go from having the power to fix everything, to seeing all the world’s problems and being able to do nothing. You have all this responsibility, but no power, no ideas.

I don’t know what this really is. Dissociation? Dehydration? I don’t quite care. All I know is that words come differently to me at this time, but concentrating on the words – or worse, concentrating on how fictional days work – pushes away the fictional nature. This doesn’t help when trying to explain what’s going on.

I write differently when fictional. Words flow in lines rather than blocks and brackets. It does not matter whether what I write is true – I find that line where even I don’t know whether I believe what I write. I’ve tried to be accurate here, because I need a record of how fictional days feel when I’m back to being real. The feeling does not stay in memory.

I want to write so much but every word is harder than the last. There must be some kind of continuum – I am heading back to reality. I don’t want to. It’s a long time since I’ve had a day like this, and I miss the simple joy of looking. Soon, I’ll be real, tired, with so much I need to do.

Some days, you want the fiction to stay forever.

Die, cis scum

I’m quite a fan of violent rhetoric. I try to cut down, but as soon as I’m angry I’m having to stop myself from threatening pain across the internet. I can be quite imaginative and disgusting.

This is the first time I’ve typed “die cis scum”. You’d expect otherwise – after all, I have just said I like violent rhetoric. The thing is, the phrase means nothing to me.

I look at death practically every day. I can see it welcome me with open arms. Die cis scum? That’s no punishment, no pain. All scum should go away, yes, but I can’t say that with the desperation and pain you do.

I’d like to make something clear. I’m not saying “death’s too good for them”. I’m just so resigned to the feelings of death that it no longer feels worth saying.

On Suicide

I’m not as suicidal as I used to be.

There was a time when I was certain that I would commit suicide. I didn’t particularly want to; it was just a fact of life. I knew that one day my emotions would overwhelm me, and that would be it. I’ve done a lot of things in my time I’ve regretted; it made sense that I would go too far, again, and then decide I was of no worth to humanity.

My experiments with the education system have failed. Most of the time, I’m too scared to leave the house. Now, I think it’s certain that I contribute far less to society than I take. But I’m not as suicidal, though I look to the future and only see more pain.

I know now that I can’t do it. I’ve tried, but I’ve never taken that final step. I’m too scared of it going wrong, that I will cause yet more trouble for people. No-one can be watching, because they could interfere.

I want to die. I really, really want to die. Taking my body for parts is all I’m good for. I think many nights of what would happen if I died in my sleep.

They can feed me up with tablets all they like, that won’t change what I can do.

And I used to be worse than this.

Expanded Metaphors

In this post, I’m going to deposit three metaphors I have developed.

1. The Islands (on gender and socialisation)

You start off in a plane, ready to parachute down to the islands. You are handed two sketch maps of islands, and told which you will land on. (If you were to compare your maps to someone else in the plane, you’d see they weren’t exactly the same, but you don’t get a chance.) You jump, and land.

Some people find their map to be quite accurate to the island they find themself on. Others attempt to alter the island to look like the map. Still others realise that the map they should be looking at is the other map, the one they were told they’d never need to use. And some find an island that isn’t on either of the maps.

I landed in the sea.

2. Hills and Valleys (on depression)

When you’re at the bottom of a hill, it’s hard to climb it. You’ve climbed hills before, and you no longer see the point. It takes so much effort to climb the hill, and everyone else seems to believe it’s easy. But you’ve spent too long in the cold of the shade, and long to feel the sun on your face. The only way to is to climb. Eventually, you do.

Everyone has told you about the beauty of the view from the summit. But all you see is a series of valleys and difficult climbs, stretching off into the distance.

3. Admin Staff (on allyship)

You are a member of university admin staff. You find the students don’t like the admin so much. The students want the admin staff to “take a long walk off a short plank”. Students would rather drink Lakewater than deal with admin staff a second time.

You’re hurt. You’ve always tried your best. Admin staff aren’t like that! If people have problems with your work, they can always fill in the 15 page complaints form.

What should you do? You should find out what the problems are. But don’t just stop a random student and demand to know what they think of you, or organise a 3 hour meeting for students to come to you with their concerns. The students have most likely already collated their issues. Do some research.

And when you’ve found these problems, are you sure you don’t do this? Do your colleagues? Perhaps individuals have been a problem – perhaps policies need to change. Once you’ve made some steps to improve things, you can now talk to the students. Talk how you’re willing to change things. Say you’ve got ideas, but you don’t know if they’re the right ideas.

And students might actually like you.

Idiolect

A person’s idiolect is the words and phrases that person uses. It’s not the same as a vocabulary – people know and understand more words than they use. The classic example of this is Shakespeare, who never uses the word “Bible” in his works, but would encounter the word in his life quite regularly. Thus Bible is not in Shakespeare’s idiolect, but is in his vocabulary.

Why am I writing a post on idiolect? I’m not a linguist. But, I, like you, do use language. The language we use is important as it reflects our views of a subject, and is a hint to other people as to how they should think, in order for them to be like us. As Romanovsky and Phillips said in “Be Political, Not Polite”, “If our words create the climate, then the blood is on our hands.” You should look up all the lyrics to that, it’s awesome and very much still relevant today.

I’m trans. I don’t say I’m transgendered or transsexual, because I’m unsure of the definitions, whereas I’m pretty sure I’m trans. If I’m writing about someone who identifies specifically as transsexual, I use the spelling with two s, as there seems to be a correlation between spelling it “transexual” and people who are being gits. If you’re looking for genderqueers, I’ll respond, but I wouldn’t describe myself as genderqueer – I’d say I’m agendered, and that’s a non-binary gender. I don’t use the word queer about myself because it’s a word being reclaimed – and I’ve only been called a queer in insult once. (In fact, a whole group of us were – we looked round and saw none of us were both cis and straight.) It’s not my place to say it’s a word that’s ok, when I’ve never had it screamed at me. A word I picked up in York to describe LGBT people is LoGBoaTers, though I generally only use that about the York group.

I don’t use the oppression-related words ending in -phobia, such as transphobia or homophobia. This is because words such as these rely on the idea that mental illness is a scary, evil thing. I feel it’s quite ablist (and do note I’ve never seen an equivalent to that in -phobic language) to conflate mental distress and bigotry. While mental health activists try to make phobias and other mental problems more understandable and accepted, other activists, by using -phobic language, need to keep such terms loaded with as many nasty implicit meanings as possible. Activism must be intersectional, and I will not accept such people keeping their heads above water by pushing disabled people below it. Thus, I use -ist language (sexist, hetrosexist, cissexist, racist, ablist).

I wear a binder. It wasn’t marketed as such, but that’s what I call it. What it squashes down I refer to as boobs, because the other definition of boob is “mistake” – I’m pretty sure they shouldn’t really be there. Elsewhere on my body I have a cunt, and the fleshy flaps of skin covering it are my balls (and I know some people have surgery to make them more rounded). I have a cock, too – but given as I have no-one to hold the microscope for me, it’s pretty hard to see, and as I’m not wired up down there normatively, trying to feel it doesn’t help either.
The amount of insults I use is very narrow. I’m avoiding words that refer to genitalia – there is, after all, nothing intrinsicly wrong with having any genitalia – or comparing people to marginalised groups. This means I’m pretty much left with using “git” all the time, but at least it’s short enough to fit in tweets.
I probably use a lot of words that are familiar to me, but not to people from other localities. If you ever have problems understanding me, do say, and I’ll try to make things clearer. So far this week I’ve told a German what aniseed balls are…

All Too Familiar

I’m sat on the sofa, as usual. I’ve spent a lot of time on this sofa since November.

If you’re not usually round here – if you’ve found me because of #BADD, Bloggers Against Disablism Day – I ought to introduce myself. My name’s Kit, which is a pseudonym. I use a pseudonym for two main reasons. The first is because I’m part of the generation that first encountered computers in schools, and I had it successfully drummed into me that you shouldn’t use your real name on the internet, who knows who could find all sorts of things out about you. The second is so that my mum can’t search my name – it’s not unique, but pretty rare – and find I’ve not been entirely polite about her when I’m blogging. Well mum, today’s gonna be one of those days.

I now consider myself disabled. My mum would hate to know this. I am disabled, because my anxiety, depression, tourettes and autism combine to make life outside these four walls pretty difficult for me. Many autistic folks don’t consider their autism a disability, merely a human variation. I find it is a disability for me, as society isn’t set up for people who process like I do, and so I find dealing with society difficult. (The first two things I’d do to make the supermarket more autism-friendly is turn off all the music and make sure mobile phone signal reached all parts of the store. Oh, and I’d put a map by the entrance.)

So what’s my problem with my mum?

She dislikes the amount of time I spend on this sofa. Ever since she had explained to her the reasons why a child in her care had been diagnosed with autism, thus realising that she is also autistic, she’s had the attitude of “I can cope – why can’t you?” Well, we could point out my other problems, but that isn’t quite the point. We are two different people. Of course things manifest differently in different people! She sees herself as the standard I should be living up to, while I know full well that we have different skills to use, different coping mechanisms to implement.

I know it’s hard when you have to keep the household working while another person is curled up on the sofa, stimming. My relationship fell apart because we couldn’t look after each other – or, more accurately, I couldn’t bluff that I was calm while he was not – so I requested less and less time with him. Looking after someone who has no idea why they’re in distress is tough, because neither of you know what to do to stop it. Knowing this doesn’t bring back my thought processes. Knowing this doesn’t stop the world performing a DDOS on my senses. Knowing this doesn’t tell me that the world is safe.

The other problem with my mum is she assumes that every day can be a good day. She sees my admission to the mental health ward in October as the lowest point on a graph that has risen every day since then. That’s simply not true, and not just because I was actually worse over the summer, but had no-one to drag me to A&E. (The number of times I’ve gone there with suicidal intent and been sent away, I tried to stop her taking me because it would just be a waste of our time.)

I really want to shout at my mum that my mood ain’t monotonic, but she wouldn’t understand the mathematical term for the graph I described above. Some days, yes, I can go to the gym and cook dinner and go shopping and go to my ceramics class. Some days, I spend most of my time dozing on the sofa or playing puzzle pirates, anything to prevent me entering the kitchen (it contains knives). I shouldn’t have to apologise that I’ve had a hard day, that I’ve wanted to cut my toes off or been surrounded by noise. But an apology must be what is wanted if I’m being shouted at for spending all day on the sofa again.

My dad, on the other hand, is not as bad. He tried to distract me for a couple of minutes on Saturday, while my mum squeezed onto the sofa beside me and read her book. But he is currently building a hypothesis that is on shaky foundations that I would hope I was a good enough statistician to avoid. Whenever I have a bad day, he asks me what I have eaten. Usually, it’s not much. (Ever since I was supposed to use a kitchen at university that was in a permanent state of foulness, I’ve found it very difficult to identify when I’m hungry.) He takes that as evidence that me not eating much causes bad days, though if he sampled my good days, he’d find I’d eaten just as badly. (Actually, I do eat slightly worse, on average, on bad days – the category of bad days includes the days in which I’m too nauseous to eat, or too terrified to enter the kitchen. Taking this evidence, the causation runs the other way.) This leads to him blaming me for situations that were out of my control.

He said that if I couldn’t eat properly, they couldn’t look after me any more. They would have to send me back to the mental health ward. This scared me so much I threw up repeatedly. So much for the nutrition from that day…

I’m sorry I’ve just ranted about my parents at you. I think at this point I’m supposed to write a conclusion about how even those who insist they care can be disablist and painful, but I think you worked that out, and most of you knew anyway. If you’ve got this far, thanks for reading. Would you like a poem?

thewanderingmonster to “I Wish I Didn’t Have Aspergers” #AutismPositivity2012

Howdy.

I’m Kit, and I’m autistic. Diagnosis isn’t important – how can a mental health professional know you better than you know yourself? – but because the university psychology department needed more autistic folks to run experiments on, they threw me at a student who was training to be able to officially diagnose people.

She told me what I already knew.

Now, this is a piece for the AutismPositivity flash blog, and I admit I’m not that positive. But I wanted to try to write something, partly because I know there’s gonna be folks posting these who have no idea what you’re going through. They’re going to be saying they never wished they were neurotypical, and maybe that’s even true. None of us know what you’re going through, because none of us really know who you are.

So, what do we know?

We know you have Aspergers. There is no clear consensus on the mental difference between Aspergers and Autism. It really depends on what people expect from you and whether you’re having a good day. Aspergers is supposedly “higher functioning”, but the concept of functioning levels is bunk. At the moment, I’m pretty high functioning – I’ve showered, made my own breakfast, and I’m now writing what I hope is a coherent blog post. (The fact I got up after noon is irrelevant, I hope.) But yesterday I was lain on the sofa, forcing myself into the cushions, scratching them to distract myself from the feelings of terror rattling inside my head. I couldn’t move, I couldn’t speak – I couldn’t get myself onto puzzle pirates (my current favourite computer-based distraction) to calm me down.

You can’t call that high functioning.

We also know that you ain’t having it so great right now. We’ve no idea what the problem is, so we can’t give any specific hints to help, though people keep telling me I could do with earplugs. I can’t promise that things will get better – I couldn’t promise that to the queers, either – but I can tell you, we are in the same boat. Some of us, below the water line.

What words can I say that I hope you want to hear?

We’re all here for you. You’ve been online, and I hope you get the chance to regularly. Get yourself onto twitter, tumblr or a blog site. No matter how little you can phrase, how few of your experiences you dare speak aloud, pass them on. Use a pseudonym if you’re worried that your mum will find your rant about the difference between what she expects from you and what you can do. Post whatever you like. Everything you post will be about autism, because autism pervades your life. Reach out to us.

And we, the autistic people of the internet, will reach back. We will listen, read and watch, as the world becomes too much for you, once again. We will comfort, distract and share our knowledge. We have to support one another, as so often no-one else will.

We too have bad days, difficult families, unusual interests. We fall apart, argue, get trapped. And I personally wouldn’t be able to go on if it weren’t for the people I’ve found online. Sometimes I’m finding it so hard I can’t go on at all, but I tell them, and they say “We want to keep listening to you”.

No matter how hard it is, you’re not alone. Talk to us. We’re here.

Everything I write

As my blog has appeared on a list of blogs written by non-binaries that’s going round tumblr, I worry that I’ll have disappointed some people, as I’ve mostly written about disability recently. But I have come to a realisation.

All my posts are about being nonbinary.

All my posts are about being trans.

All my posts are about being autistic.

All my posts are about being depressed.

All my posts are about being unemployed.

And all my posts are about being white.

And all my posts are about having a loving home.

And all my posts are about being middle class.

All my posts are by me, and they are all about all of me, no matter how it seems. Because intersectionality means that everything in my life affects how I am treated and how I see the world.

You read a post on depression, but how differently would I have written it if I were not autistic, trans, middle class?

You See Me?

This poem was written in response to all the media nonsense of “Disabled person occasionally does something”. Yes, we do. You don’t notice the rest.

You See Me

You see me
Wandering around the supermarket.

You don’t see me
Glued to the spot, unable to decide which way to go.

You see me
Bouncing down the steps of the doctors.

You don’t see me
Frozen to the sofa, not daring to move.

You see me
Taking photographs in a museum.

You don’t see me
Cowering in the corner because of the noise.

You see me
Enjoying evening classes.

You don’t see me
Terrified of the traffic on the way home.

I know I have a lot fewer problems in the outside world than some disabled people, but I can’t speak for anyone else so I’ve kept to my own experiences. If anyone would like to add a verse or two based on how their life runs, that would be good.