The Hidden Village of Aspergers

April 24, 2016

Autistic kids being targeted by hackers

Stuart Duncan, the father of an autistic boy, started Autcraft, a Minecraft server for autistic kids and adults to play in safety. Then this happened:

On April 6th, 2016, two people attempted to hack into the Autcraft server and failed.

What they did succeed in doing, however, was to hijack our IP address, effectively redirecting all the traffic from our server to a server of their own.

The children that signed on to play, some as young as 6 years old, signed on to their server instead of mine. Once there, they were encased in a bedrock box from which they could not leave and were told that they were rejects from society, degenerates and that they should kill themselves.

When I asked these guys why they’d do such a thing, they responded “it’s funny.”

They told us that we’d never figure out what they had done or how to stop it and that they’d continue doing it unless we paid them $1000.

The full article is here.

The hatred for autistic people in some corners of the internet is incredible, it really is. I’ve seen ‘autistic’ and ‘sperg’ used as insults more times than I care to admit (I’m a goon, and it’s one of the few things I hate about Something Awful). Anyone showing an over-enthusiastic interest in something gets called ‘autistic’ (such as people on TV Tropes). We’re treated as little more than a joke, and I’m fucking tired of it. I can’t help having this disorder and I do try my damnedest to integrate – I have two jobs and two degrees, I have a great group of friends, I go to gigs, I own my own home, I can take care of myself (cook, do laundry, clean etc.), I go on holiday on my own. But even people like me who are able to manage some degree of independence aren’t safe and there are some people who would prefer it if we were wiped off the face of the earth.

In the comments on this article on Ragen Chastain’s Facebook page, one person brought up Chris-chan as a possible reason why autistic kids and adults are so hated. Now, Chris-chan has a ton of issues that, in my opinion, are as much to do with his upbringing as they are with his autism. I do think he is genuinely autistic, and his parents have a lot to answer for, frankly, and when I see him it makes me realise how lucky I am to have a mother who actually gives a shit about helping me function in the world. But that’s another story. What really irritates me is the idea that all of us are being judged by this one dysfunctional human being. The vast majority of us are not like Chris-chan and are just trying to get on with our lives. I’m not a Minecraft player myself, but I do feel so bad for those kids. They’re just trying to play a game, and now they can’t do that because some arseholes think it’s funny to bully them and tell them they don’t deserve to live. And frankly, the word ‘degenerate’ used to describe disabled people scares me. It sounds like something the NF would say.

It’s incredible how there are people who hate us and don’t want us to have fun and would prefer it if every single one of us ceased to exist. If my mum lost her daughter, and my brother lost his sister, and my family and stepfamily lost a loved one, and my friends lost a friend. I have been overwhelmed by the amount of support I’ve received from friends this week after a major depressive episode culminating in self-harm (see here for some of the reasons why). It reminds me that there are people on this godforsaken planet who want me to stay alive. And the loved ones of these kids would feel the same if they died. I wonder what their mums and dads must be going through, knowing strangers on the internet are wishing death on their children because it’s ‘funny’.

And all because they’re autistic.

April 12, 2014

Paranoid 6teen

If you’re getting nervous
Cos all your defences are down
And you’re running through a storm
But there’s no one on the other side
You’ve got to avoid being paranoid sixteen

(Note: I’ve been putting this post off for a while as it’s not going to be easy to write, but my brother turned 28 on Thursday. This post is for him.)

Dear Jack,

You probably have guessed this, but I’m going to come out and say it: I was always jealous of you.

You were everything I wanted to be. You were, frankly, normal. You had friends; you were popular; you were cool; you liked the right music, the right things; and most important, you didn’t have Aspergers and you didn’t get bullied. You weren’t an emotional mess like me (or Mum, for that matter – you’re the only one out of the three of us who hasn’t struggled with some kind of addiction). When Mum yelled at you, you didn’t shout back at her like I did. You were more OK with Mum remarrying than I was (which is pretty ironic, considering how badly things ended up between you and Ex-Stepdad). You did everything before I did. I felt like was the younger sibling; I was so inexperienced and boring compared to you. I didn’t have sex until I was 17, didn’t start drinking till I was in Year 11, didn’t do anything stronger than weed till I was a student, didn’t have a serious relationship until I was in my twenties. You were growing up faster than me, and I resented you for it.

I’m not going to lie and say we’ve always had a brilliant relationship. At times, I hated you and I’m sure you hated me. You were pretty violent to me when we were little, and I returned the favour when I was older. You did a lot of things that made me angry. I hated the way you and your friends would wind me up and laugh at me, especially when I was with R. I hated how you called me a ‘whore’ after you found out about the Krazyhouse incident, how you told me to shut up whenever I sang or played the flute, and how you were clearly ashamed and embarrassed to have me for a sister. When I won the Comic Relief talent contest, kids in your year told you that your sister was a bitch, and one little shitbag joked about us being in an incestuous relationship. However, I also remember that I won a load of sweets, and as you were off sick that day, I shared them with you. Likewise, a year or so earlier, when I was off sick, you gave me a copy of Tin Planet that Danny Melia had taped. (Ah, that album. We fought over it like it was our child, even after you decided you hated Space and that I knew nothing about music.)

But then, I’m going to hold my hands up and say that I wasn’t a very nice older sister. When you and Emily started going out, I couldn’t handle it, I was eaten up with jealousy, and I said and did some pretty nasty things. I scratched you, screamed abuse at you, threatened to knife you. I’m not proud of that. I would never have done it – I’m more likely to hurt myself than another person. Sometimes I’d be spoiling for a fight. I made you cry a few times. I could be bitchy and condescending, and I did side with Ex-Stepdad against you at times, although in retrospect, I wonder if he was trying to play us off against each other.

You’re the reason why I cut Ex-Stepdad out of my life. He used you as a way to get at Mum. When he was angry with me, I’d get it in the neck, but when he was angry with you, he took it out on Mum instead. Maybe he was jealous of you. I hope not, because that would be fucked up. He badmouthed you to the McPartlands one time and I was really angry. Basically, I can talk shit about you because I’m your sister, and you can say what you want about me, but Ex-Stepdad doing it was different. He was an outsider. He called you an arsehole behind your back. Mum told me he didn’t trust you, and he was prepared to leave you to spend the night sleeping in a station in Crewe. Yes, you were a pain in the fucking arse at times, missing the last train home and asking Mum to collect you, but still. I lost my temper at Ex-Stepdad that night, I tell you now, because I was worried something would happen to you. That was why I found it weird that he sent you a card, and I don’t blame you for ripping it up. (I put some sweeties in your birthday package because of that!) You were only little when Dad died, and you needed a father figure, and he failed.

The turning point for me came when I found out he’d asked Mum how I was doing, but not you. He made it clear that he didn’t give a fuck about you. That settled it. We are a package deal. Just as Alice and Tom are a package deal – I mean, fucking hell, can you imagine Mum blatantly favouring Alice over Tom like that? No, you couldn’t. When it came between you and Ex-Stepdad, you won out and I was so disgusted by the way he treated you and Mum that I cut him out of my life. I regret nothing.

It took me by surprise when I found out how upset you were about the overdose, and that you’d argued with Mum, saying she shouldn’t let me go back to uni. I honestly did not realise you cared so much. Then you sent me a text telling me you loved me, and one night you were pissed and told me how much it hurt you when I cut myself. When we were helping you move out of Liverpool halls, you saw the scars on my arms and freaked. I think we became closer partly due to that. You began to open up more; you even started hugging me. We never hugged as kids. The only body contact we had was hitting and kicking and scratching each other.

I have many happy memories of you, before you think that I’m just slagging you off. The Famous Five fanfic we wrote together, the word games we’d play in the car or walking the dog, the Sundays with Dad in Hove Park, dancing to East 17 with Danny and Mike in Southampton, going swimming with Mum. More recently, there’s Primavera 2013. When we were at Leeds 2002, we avoided each other, and 11 years later, we were watching Wu-Tang Clan together with your mates. How times change. You also helped me during the time when Mum was in rehab – you and Richard helped me get over my guilt and sadness and helplessness. She also told me you looked after her when she had a panic attack. I was so proud of you. I only wish I’d been able to go to your graduation ceremony (bloody swine flu). Again, I was so proud of you. Ex-Stepdad never had any faith in you, but I did. I knew you’d be OK in the end.

I do care about you. When I came home from work and saw you crying on the sofa, and Mum told me Emily had dumped you, I wanted to beat the shit out of her, because I couldn’t bear to see you so upset. Seeing you cry at Gran’s funeral in 2005 hurt, as did finding out that you weren’t as confident as I thought you were, that you had insecurities of your own. I’d known you all your life, and yet I knew so little about you. I’m glad that we’re making up for the teenage years now. A lot of damage was done, but we’re getting there. You’re not ashamed of me anymore and I’m not jealous of you anymore. I’m looking forward to seeing you soon.

I love you, and I always will. You and Mum are everything to me.

Lotte x

March 26, 2014

This isn’t part of the Space miniblogs, but it is important.

A mate of mine linked to this article on Facebook, titled ‘Intersectional Collisions: “But What If He’s Autistic?”‘. It’s on Feminist Hivemind, and it’s well worth a read. This is exactly the reason why I started this blog; because of the continued misconception that autism / Aspergers are ‘male’ conditions. People might ask if the guy harassing women is autistic (and therefore, he can’t help his shitty behaviour), but do they ask if the women being harassed might be on the spectrum? Do they balls.

Firstly, it’s bloody demeaning to men on the autistic spectrum. For every Chris-Chan, there are plenty of decent men who, while maybe being a bit socially awkward, have boundaries and respect them, and don’t use their disability as an excuse to creep on women.

Secondly, what about us? What about the women on the receiving end? What about autistic women being harassed by neurotypical men? I wrote a bit about this myself in the Bastard Me Bastard You post. We aren’t always given the tools to deal with harassment. Should we laugh it off? Ignore it? Respond? I’ve seen the ‘he might be autistic’ excuse used enough times, and it absolutely does my head in.

Anyway, go read.

March 15, 2014

Bastard Me Bastard You

TW: sexual assault / rape

Oh, wouldn’t it be nice if I could make you mine?
To own and dress you up, control you all the time

Before I go any further, I feel I need to write this disclaimer: I do not hate men. My father, my brother, stepdad, stepbrother, uncles and some of my cousins are men, I have male friends, and there are plenty of decent men out there. I’m not going to write off an entire sex. But I am nervous around large groups of men, I worry about getting involved with men, and some of the worst bullying I suffered was at the hands of men. A lot of it was sexual in nature. I’d have all kinds of disgusting comments shouted at me in the yard, and one time a bunch of kids tried to get me to feel myself up in a park, and there was talk of me giving one of the guys a handjob. I freaked and ran home. Another time, a guy shoved his hand up my skirt as I was walking up some steps. I was told that I didn’t need a bra as I had nothing to put in it; my developing tits were hidden under my baggy school sweater. In Year 7, a crude caricature of me was passed around English class. One guy had a song about fucking me in the arse to the tune of ‘Who Do You Think You Are?’ There was a running gag that I liked using sausages as dildos because I said ‘yes’ when asked if I liked sausages. Me being innocent and literal-minded, I had no idea they weren’t talking about food. This went on all through high school. Even when the guys in my year who picked on me had left, it didn’t end, because there were the guys in my brother’s year. I had a reputation by then. Word got around at Christleton High School.

When I was a teenager, I had a nasty incident with a guy in a club. Some would call what happened to me rape, although under British law, it was sexual assault as he didn’t use his penis. He used his hand. Because I had a bit of a complex about being a virgin, and because I worried so much about fitting in and that ‘everyone else’ was having sex and that I wouldn’t be a normal person unless I got laid, I would go out clubbing in the hope that I could pull some guy for a quick fuck in the toilet. It happened once, in the Krazyhouse in Liverpool; another time, I came very close to it, but couldn’t go through with it in the end. I can’t remember when this incident happened, but I was in Sixth Form and I was out with R, my best mate, and I got a bit friendly with a guy he knew and let him shove his fingers up me. We went outside and sat in an alcove over the road, and I wanted to go back into the club, but he wouldn’t let me and I had to wrench myself free. When we got back into the club, he started fingering me again and I told him to stop, as he was hurting me, but he kept on doing it and only stopped after R told him to leave me alone.  I never went to the police or anything. It didn’t occur to me. I doubt they would have believed me anyway. After that, I was a bit more careful. At uni, in second year, I lived in a dodgy area of Fallowfield and one night, as I was walking home down Moseley Road, a man slowed down his car next to me. I don’t think I’ve ever run so fast in my life, not even on Sports Day.

Some people with Aspergers are easily taken advantage of. With me, I’m the opposite. I used to be taken in by men who hit on me, but now I’m hyper-paranoid around most men. I am genuinely surprised when a man finds me attractive and isn’t taking the piss. When a man hits on me, I assume he’s doing it for a laugh or a dare. After all, who’d want to fuck a fat woman with messy hair and bad skin? Years of being told you’re ugly and treated like a freak and a sexless creature and the school joke can do bad things to your head. You internalise all the things people say about you and believe that you are so hideous that no-one could possibly want you unless they were desperate. I’m not fishing for compliments. I genuinely do believe this.

This leads me onto catcalling and street harassment. Not only beautiful women have to deal with it, sadly. We ugly women do too. I don’t take catcalls as compliments. I know the men catcalling me don’t mean it and that if I do take their word for it and give them my number, they’ll laugh in my face. I really doubt any of the men who catcall me are chubby chasers, as a friend of a friend claimed. If so, there must be a hell of a lot of chubby chasers in Manchester, is all I can say. I used to hate walking into town in Chester, because I hated being beeped at. I don’t get why men do this, if I’m honest. Do they genuinely believe that I find their behaviour a turn-on, that I’m going to fall in love with them if they beep and jeer at me? Of course they don’t. It just makes me feel humiliated and small. I don’t project confidence when I walk. I walk with my head down. I have a general fear of strangers coming up to me as it is: when beggars ask me for change, and I get it a lot in Manchester, I freak. One time, I screamed in fear when a small group of them came up to me, and another time, I jerked my body away, resulting in a sarcastic ‘that’s nice’. I even slashed my arm up in front of one beggar because I felt ashamed of not giving him money, and because earlier, I’d thought he was going to rape me. I must have been feeling ultra paranoid that day. Ah, paranoia, my old friend.

I get nervous around large groups of men because it reminds me of the Chester days, basically. I can get lost in my own head when I’m walking to work or wherever, and being shouted at disturbs the feeling. It makes me scared and self-conscious and nervous. It doesn’t make me feel empowered or sexy.

May 1, 2013

Just because I am disabled does not entitle you to make stupid comments

As it’s Blog Against Disablism Day, I’m going to repost some comments that I originally posted on Twitter under the #heardwhilstdisabled tag. These are all things that have been said to me as a result of my having ME.

“You’re too young to be so tired” – said by countless people. Yes, I know it’s bizarre for someone in her late twenties to be tired all the time, but it does happen. There are people younger than me whose ME is so bad they can’t even feed themselves. There are people who’ve died from ME, for fuck’s sake, some of whom are around my age. It also makes me feel awkward when I see older people than me who can still make it to synagogue while I’m at home resting. It makes me feel like I’m not trying hard enough.

“I have to do all this work because you’re ill” – or words to that effect, said by one of my colleagues. So they can’t use me as cheap cover because I only work part-time? That’s not my fault. Would they rather I just worked myself into the ground and ended up having to leave? I’m not even supposed to be doing work for the Manchester office anyway. I’m not employed by them.

“I wish I could go home early like you” – said to me by the same colleague. You know what I do when I leave work? I go home – sometimes after stopping off at Sainsbury’s or my local greengrocer to buy food – have lunch, maybe go online for a bit, and then sleep for a few hours. If you want to go home early, you can take my reduced wages and my disability while you’re at it. Have fun!

“You’re having a relapse? Well, UN-relapse then” – said to me by a woman at synagogue when I explained that I didn’t know if I was going to be available that weekend because I was having a bad week healthwise. If only it were that simple. This is one of the reasons why I’m very seriously considering quitting the synagogue choir – I hate not being able to give a straight answer as to whether I’ll be able to come on Saturdays. How will I know?

“Stop yawning, it’s fucking annoying. Do some work if you’re so bored” – said to me by a colleague. I must point out that I was actually typing an attendance note at the time. I had also not had much sleep. Yawning is an involuntary thing for me, and it is not a sign of boredom, and no, you are not being funny when you ask me if you’re keeping me awake.

“You should do (insert exercise here), it’ll make you feel better / you’ll be fitter if you do more exercise” – said to me by various people. No, I do not want to go jogging / horse riding / Zumba dancing with you. I have to be careful how much exercise I do. I did pole dancing classes for a bit, but the last time I went, I had to sit down because I felt so dizzy and sick, not to mention the strain it puts on my body. I do exercise – I go to the gym, I swim sometimes – but if I do too much, it can set me back. When I went to Berlin last year, the amount of walking I did set me back for a good few days afterwards. Only I can know what’s right for my body.

These are all things that have been said to me as a result of my having Asperger’s Syndrome.

“Screaming kids make you go into sensory overload? Stop making it about you” – on a feminist blog entry about letting children into adult spaces, where some disabled people said in the comments that they couldn’t handle screaming children because it made them physically sick, something that happens to me (not to mention that screaming is a kind of trigger). Because only children have special needs, it’s not like adults have them or anything. When a kid screams its head off, it might be autistic and we shouldn’t judge, but autistic adults? Fuck off. What’s particularly irony is that these people claim to be anti-ablism. So, erm, why are you having a go at disabled people then? We exist too.

“You can’t have Asperger’s, you’re doing a languages degree” – said to me by a doctor when I was a student. Because people with Asperger’s only do maths or science, it’s not like creative or humanities types with Asperger’s exist (Gary Numan, Paddy Considine and Ladyhawke would like a word). This is one reason why I am not a fan of Rain Man, because people think we all act like that. Yes, a lot of Asperger’s types are good at maths and science, but it doesn’t mean we all are, plus I come from a family full of people who are good at history, languages and English.

“It may feel like a bereavement” – said to my mum when I was diagnosed with Asperger’s for the first time, aged ten. She did not take this comment very well.

And I’m one of the lucky ones. I’m not visibly disabled; I don’t have a cane, a dog, a wheelchair, a hearing aid or missing limbs. I’m not claiming benefits and being called a scrounger by local idiots who assume I must be on the take. I’ve never, kina hora, been beaten up for being disabled (I’ve been called names on the internet, but this is the internet we’re talking here). Other people, however, have, and the constant stigmatisation of the disabled in this country by our government and our gutter press just contributes to hate crimes against us. After all, we’re just faking it (especially if we have an invisible illness), we’re making it up for attention (especially if we have Asperger’s, BPD, bipolar disorder or any other illness du jour that naive self-diagnosing teens on the internet who’ve done a personality test think they have), we’re scroungers and I know someone who had a disability and still managed to go to work / work full-time / climb Everest / whatever. The fact that George Osborne parked his car in a disabled space sums up just what he and his government think of us, and it is not pleasant.

April 16, 2013

(I Don’t Want To Go To) Coventry

It’s April, Autism Awareness Month, and funnily enough, I’m sitting here typing this after having a major meltdown at work. We’re talking tears, animal wails, hyperventilation, hallucinations, the whole fun package. For obvious reasons, I’m not going to go into details about my job, but I will say that I’ve been dealing with something that has been causing me a lot of unhappiness recently, something that resulted in me going backstage at a Space gig in Leeds with scarred arms, and pouring boiling water on my arm two days later. It’s a technique that’s been used against me in the past by countless people. It’s ostracisation.

I am not psychic. I cannot always read faces or voices, so it stands to reason that mindreading is beyond my capabilities. When someone is angry with me and I don’t know why, it makes me paranoid as hell. It makes me wonder what I’ve done and the ability I have to trust other people gets slowly chipped away. When they refuse to speak to me, even if it’s in a situation where not talking to me causes even more problems – i.e. a work situation where people are required to communicate with each other. As a result of being ostracised at work, I got into trouble. Again, I can’t go into details. Because work was where I had the meltdown, it’s going to happen again. I spent most of last week and the week before that sitting in silence, not knowing what I’d done. The last time it happened, I was told that I had been rude and not apologised – I know for a fact I had apologised – and I ended up crying and begging for forgiveness, and later cutting myself when I got home.

Going silent on me is one of the cruellest things a person can do. Talking to a person refusing to speak to me is like battering on a door repeatedly, until my fists are bleeding. I remember after I’d taken an overdose in 2005, and when I walked into a room where my housemates were, they made excuses and walked out. A week or so earlier, when I came home from the hospital and rang the doorbell, one of them let me in, glared at me and just walked up the stairs without a word. Not one of them asked how I was. They avoided me after the overdose, even after I thought I’d made some headway, and soon after, I moved out.

I hate being left out of things. It’s happened to me since I was a kid. I was always standing on the fringe of groups in high school and was never really a part of any of them. So many people I thought were my friends actually hated me. I remember the pain of being one of the few people in my year who wasn’t invited to a popular girl’s party, and hearing everyone who had gone talking about it and what a laugh it was. This happened in Year Nine and in Sixth Form – two different girls, two different parties, and the same situation. I remember sitting in the common room in the area where the popular crowd sat, and although I was friends with some of them, I remember a big group of them dancing in a circle in Love Street, with me on the fringe, and one night, one of them telling me to my face that no-one liked me. When I got older and went to uni, the same thing happened – not just with my housemates, but with people in the Rock Soc as well, and because I am so clueless about socialising, I didn’t know whether my attempts to integrate were working or not. Trying to navigate the Barcelona Metro is as easy as breathing, compared to trying to navigate interpersonal communication.

When a colleague makes a big point of ignoring me while talking to everyone else, it fucking hurts. It makes me feel so tiny, so insignificant, so invisible. It reminds me of how I am an outsider and how I will never fit in. I’m back in the common room. I’m back in Jilly’s Rockworld, watching the man I obsessed over and his group of friends hanging out, knowing that if I go over there, he’ll make a big point of walking away. Sometimes I want to stand in front of them and slash a vein and spray my blood over their face, just to remind them that I am there, since I suppose the idea behind ostracisation is, ‘if I pretend Lotte isn’t there, maybe she’ll disappear’. I wish I could, but sadly, it’s not physically possible for me to just fade away into the ether. I am not a ghost. I am a fucking human being. No amount of ignoring me is going to make me disappear.

You’d think adults would know better, but some people never leave high school, it seems. I try not to think about it too much – I left over eleven years ago – but I have a lot of trust issues as a result of high school and there are certain things I react to badly, and ostracisation is one of them. OK, so it’s not anti-Semitic abuse or arse-pinching or nasty notes on my desk, but it is still a form of bullying, and it hurts. It hurts seeing people having a laugh and knowing you will never be accepted into their group, even if said people all actually hate each other. It makes me want to scream and shout and smash things and hurt myself.

I am currently looking for other jobs as a result and hoping to go into translation work. My office is small and open plan, a hellish place with someone for Asperger’s Syndrome, but that’s for another post. I know I should be grateful for having a job in these times, but when that job is causing me to come home feeling miserable and barely able to function, it’s time to get out.

September 18, 2012

This is going to be a political post, sorry.

Filed under: fuckwittage,m.e. awareness — kankurette @ 8:26 pm

I’ve neglected this blog for too long, especially recently as. I need to start posting again, particularly as I spent the weekend at my mum’s house, reading a boxful of letters and cards and obituaries that she kept after Dad died. I plan to get in touch with two of the writers of the obituaries, as they are old friends who we haven’t heard from for years; I have already found one through Linkedin. Thank G-d for the internet. Anyway, being reminded of how respected my father was in matters energy, and the way his writing touched so many people, inspired me to write again. The other thing that inspires me to write this blogpost is anger.

I am extremely grateful that I am able to work. Compared to other people with Asperger’s, and certainly other people with ME, I am privileged as hell. I am able to hold down a job, take care of myself – showering, making sure I have clean clothes, etc. – talk to people and manage to spend four hours a day working without feeling sick (most of the time). I am able to cope with minor changes in routine and I spend my afternoons resting. One of my greatest fears is my health deteriorating, because I worry that even if I was bedridden, this government would try to force me into work. After all, my mum’s friend Lizzie has severe back problems, caused by a lifetime of working with disabled children, that forced her to give up her job. She is barely mobile and can only walk short distances. And yet, her benefits were stopped and she was declared fit to work, even though she is no way near fit. Lizzie is not a unique case by far.

I’ve subscribed to the black triangle campaign on Facebook and day after day, I read horror story after horror story of people who are barely able to move or take care of themselves losing their benefits. Some have committed suicide. I wonder how many more people will die, either naturally or through taking their own lives, as a result of this.

I have always liked Elvis Costello’s album Spike, which was played to me throughout my childhood, and one of my favourite songs on that album is ‘Tramp The Dirt Down’, an anti-Thatcher tirade that makes me cry whenever I hear or cover it. The line that makes me well up is ‘I never thought for a moment that human life could be so cheap’. Never has it rang so true. Crazy though this sounds, I sometimes wonder if disabled people are even considered human by the current government. Do they even care if we die? After all, we’re expendable. We’re a burden, a drain on society, and most of us are probably faking it anyway, especially if we have an invisible illness – at least, that’s what the papers claim, and then we wonder why hate crimes against disabled people are on the rise. There were 2095 crimes against disabled people recorded last year, compared to 1559 in 2010. That’s pretty worrying. How many will there be this year? Even if the Paralympics does raise the profile of disabled people like never before, will it be enough?

When George Osborne presented medals at the Paralympics – which were sponsored by ATOS, which is kind up there with, say, McDonalds supporting an event promoting kindness to animals – I thought, “Well, Chris Morris, you and your fellow satirists can retire now. Satire is dead.” It is both darkly hilarious and disgusting to see the very people who are taking benefits away from disabled people, Paralympic athletes included, giving medals to disabled people and sponsoring an event concerning them. For two weeks, disabled people are heroes, inspirational figures, and then it’s back to normal. I’m not having a go at the Paralympic athletes. I think they’re incredible and they deserve acclaim for their hard work, just like their able-bodied counterparts. I just find the hypocrisy of the government around the Paralympics absolutely sickening, just like Cameron praising the Olympic athletes while funding towards sporting activities is being cut.

Disabled people deserve better than this. The many should not be punished for the actions of the few idiots who do fake disability. It is not practical to have people basically coerced into working jobs that they are not physically capable of doing, especially if said jobs only make them worse. And with jobs disappearing due to cuts and becoming harder and harder to obtain, what is left for the people taken off benefits? Are they just expected to starve to death? Does Cameron think relatives will help them out or something? I’m lucky enough to have a great network of relatives who will take care of me – my mum and auntie took turns looking after me in the week after my eye operation, and made sure I was OK – but not everyone else is. Maybe I’m sounding hysterical, but I’m tired – I’ve had a bit of a flare-up this week – and I’m angry. I miss my dad like crazy but the one good thing about his death is that he’s not around to see what this country is turning into. I just hope to G-d that we never lose the NHS and become like the US; I have heard so many horror stories from American friends, and it terrifies me to think that, in the event of an operation like my last one, I’d be forking out thousands of pounds, which I do not have.

While this lot are in control, I pray that my health does not get worse. I have an invisible illness, and good days and bad days. Sometimes I can get through my shifts OK, but on other days, like today, I’m not so lucky. My Asperger’s shouldn’t hold me back too much, but my ME does, and although Asperger’s is a lot more in the mainstream than it was in 1994, so many people still think ME is fake. Invisible illnesses are more complex than they seem. They are not black and white. Just because I have good days does not mean I am faking. Hopefully, it will never come to the point where I am too ill to work. Hopefully. The consequences are too horrible to think about.

August 7, 2011

Arguing on the internet is never a good idea

Filed under: fuckwittage — kankurette @ 7:46 pm
Tags: , ,

For the past year or so, I’ve been posting in a Facebook group that monitors the activities of a certain right-wing group. Members of said right-wing group would come on the group to troll us and post the same tired misconceptions: that we hate Britain; that we are apologists for rape, paedophilia, Islamic fundamentalism etc.; that Jewish members are modern-day kapos; that we do not wash, live in our mothers’ basements and never, ever leave the house; that we are anti-Semites and Nazis, which is kind of ironic, really. Sometimes, there would be neo-Nazis and Holocaust deniers, and then it got ugly. Many times, I found myself extremely upset at some of the comments posted. I remember being quite badly triggered by some comments posted about Jews who oppose the group in question, and had to be calmed down.

I met up with friends for food a few days ago, and I got talking about the apologism for Ratko Mladic and Anders Breivik that I’d seen from some members, and one of my friends asked me why I still post there when it’s clearly upsetting me, and why I bother trying to engage with these people.

And you know what? She’s right.

Arguing on the internet has never worked out well for me. Oh, sure, sometimes making fun of idiots is fun, but in the long term, you just get angry and frustrated that some people are so ridiculously ignorant. This is nothing new. Way back in 2005, I co-moderated the political forum on the old Hole site, Kittyradio, and was constantly arguing with trolls who didn’t like the band at all and were just there to convert the liberals or something. It came to a head when American users were telling British users we deserved the 7/7 attacks for ‘letting jihadis into Britain’. I left and never came back. I’d had enough.

Some people love arguing. I don’t. It’s not a case of being a coward so much as not seeing the point. When I change opinions, I change them of my own accord; being shouted at and insulted is not going to make me go, “Why yes, I am wrong.” I do wonder if my hatred of confrontation is something to do with the fact that my mother and father rarely argued, if ever, and on the occasions they did, it never got nasty. Unlike my stepfather, my dad never made my mum cry. When my mother remarried, she and my stepfather could get quite heated, and it upset me a lot, because it was something I wasn’t used to. If I was in the room when they were arguing, I’d go up to my room and hide and wait until it was over. At least it never got violent, but hearing raised voices when you’re trying to sleep and someone storming out to sleep in the spare room is pretty disconcerting when, as a kid, your biological parents never did that.

The main problem is that when someone insults me, calls me unwashed or a kapo traitor or a fat ugly Jew or disgusting, or says my mother is a disease-ridden whore, I take it personally and literally. I know I am not dirty or unwashed. I am very conscious about cleanliness, I regularly change my bedsheets and do my laundry and try not to fall into the trap of wearing the same stuff all the time, I shower and bathe and brush my teeth. I will not run away screaming if you throw soap at me, although I would be somewhat pissed off if it smacked me in the head. I know my mother is not a disease-ridden whore and that she has not been having it off with some bored troll on Facebook who’s never met her anyway, any more that my cousin Alfie is a gorilla who rides around on a tiny pink tricycle. With a horn that plays La Cucaracha.

I have to remember that the person who is calling me these names does not see me, know me or care about me. They just see my beliefs or my membership of the group, and make assumptions. I am not really a person to them; I am just some words on a screen with a goofy picture attached. I am a concept. When they refer to women or Jews or queers or disabled people, they think of those groups as a homogenous mass rather than a group of individuals, the same way that some Americans see Europe as one big homogenous landmass rather than a continent made up of different countries, with different politics and religions and laws and cultures. It’s easier to hate the enemy when they are a nameless, faceless, shapeless crowd with no names and no histories. It’s easier to dehumanise the enemy when the enemy has a vague identity and becomes a mass, a ball of Play-Doh, a walking Portguese man o’war, a sentient jigsaw puzzle.

They do not see someone who plays the piano or sings in a choir or watches stupid videos of animals on Youtube or goes to rock clubs and gigs or reads Discworld or whatever. They just see the group, and a piece that has broken off the main part of the puzzle, without looking at the picture on the piece.

And I can’t be bothered with them anymore. I will not change their minds and they will not change mine. They will not listen to opposing opinions or account for their behaviour, blaming it on infiltrators. They are not worth my time or my energy. I could be putting it to better uses, like practising the solo from Kevin Carter or arranging a new referral (and I will remember this time, dammit!)

That day, I sat on the steps in Piccadilly Gardens with my friends, and then we went to Wetherspoons and ate curry and talked about whether George Clooney and Bryan Adams were an item, Tori Amos’ increasing nuttiness, and Whoopi Goldberg’s lack of hair. I left feeling happy that I’d got out and spent time with people, as being ill, I don’t go out as much as I would like. And it was all entirely more fulfilling than arguing with idiots and getting upset over it.

October 19, 2010

A cross between Alan Partridge and Eeyore

Filed under: fuckwittage,language,stuff what i have read — kankurette @ 7:52 pm
Tags: , ,

When I went to the Latitude festival with the family earlier this year, I met up with my brother and his girlfriend after Belle & Sebastian’s set, and amongst other things, he told me to go and check out a young female poet-cum-rapper he’d seen performing around London. Her name was Kate Tempest, and she was performing in the Poetry Tent. She also, it turned out, is from Brockley, the same area I lived in when I was a baby.

Kate Tempest looked pretty innucuous; she had long, curly blonde hair and was wearing jeans and a sweater, and looked more like a first-year student than a rapping poet, but then she opened her mouth, and I was hooked. She spoke of south London, of teenagers growing up on dismal grey estates where she and her friends would ‘paint rainbows’, of troubled youth, of self-destruction and getting drunk and having a fag and saying and doing regrettable things and then writing poems about said regrettable things on wine-stained paper. Watching her in action was incredible; it wasn’t a poetry reading so much as a tornado of language and sound, and I wished fervently that I could articulate myself so well when I opened my own mouth. I can write poetry, sure, but I totally fail at reading it.

One of the reasons why I blog, and why I am writing this, is because I find it immensely hard to articulate myself when I speak. Some people tell me I’m articulate, but I open my mouth and I hear this sound that’s half Alan Partridge’s daughter and half Eeyore, and I stumble over words and sound like some mouthbreathing Baldrick. I hate speaking to people I don’t know and speaking in front of big groups of people, and although I dream of doing a talk for the NAS, or being an advocate like Chris Mitchell, I worry that I’ll start speaking and utter bollocks will come out, but give me a pen or a computer and I’m fine.

So you can imagine how pissed off I was to hear that – and yes, I know this article is a couple of weeks old – Andrew Marr thinks most bloggers are, and I quote, ‘socially inadequate, pimpled, single, slightly seedy, bald, cauliflower-nosed, young men sitting in their mother’s basements and ranting’. Aside from the fact that Marr actually seemed like a decent guy and one who would surely be above such juvenile crap, I actually disagree with his statement. For one thing, it smacks of the whole ‘hurr hurr there are no girls on the internet’ argument so beloved of trolls. The feminist blogosphere say hi, Andy, as do I. Yes, I am blogging and I am a GURL.  (Also, my mum doesn’t have a basement, and I moved out of her house four years ago, so nyah nyah nyah nyah nyah. Ahem.)

Yes, the internet does attract people with rather…unique views on life. Yes, there are a lot of angry bloggers out there who spew nothing but hate and paranoia. Yes, there are bloggers who are sexist, racist, misogynist, homophobic, eliminationist, and just plain disturbing. But please don’t lump all of us in with them. For those of us who find it hard to speak, blogs help us. They are a way out, particularly when they can be used to help others – for instance, the Mutual Madness blog, where people will post their worries and queries, and Mental Nurse regulars will do their best to answer them. Mental Nurse itself has done its bit to (to paraphrase Zarathustra, the evil enabler / mod) expose all kinds of liars in the medical profession, and also gaps in psychotherapy egulation that jeopardise mental patients’ welfare. Net result: Mental Nurse has been in the papers. People are sitting up and taking notice. It all smacks of the kind of work my dad did in the early days of nuclear power in the UK, and long may they continue.

Blogs are also a great way to learn about other issues, through the eyes of the people they affect, and not all bloggers of this ilk are the kind who insist Barack Obama is some kind of magical space Muslim Communist Jew ninja pirate. I have an American online friend, for instance, who often blogs about reproductive rights, healthcare, fundamentalist Christianity and general politics in the US, and her blog makes for very educational reading at times. Certainly, she links to news, but also to sites such as Sadly, No! and PZ Myers, whose comments are as worthwhile as the articles themselves. As well as the above mentioned friend, I also read the blogs of queer people who blog about their experiences of homophobia, institutionalised or otherwise; of transfolk and genderqueers who discuss transphobia and gender identity; of people struggling with mental illnesses and physical conditions; and so on. Through the internet, I’ve found a good few people who share the same interests and values as me, and corny though it is, it’s reassuring to know I’m not alone. One of them became one of my best friends. (Hi, Chloe, if you’re reading this.) For those of us who struggle with talking to people in real life, the internet is a valuable tool.

I also find it a great form of release. Some say venting is counterproductive, but not always; I feel better when I’ve picked up the phone and ranted to my mum or a friend, but sometimes I don’t want to dump my problems on other people and force them to listen to my incessant whining. So I write them down. If it’s on a public-ish space, I may get comments, and that’s nice if I do, but the main reason is just to get it out of me. It’s certainly more healthy than picking up a razor blade and slashing my arm. It doesn’t always deter me from doing that, but sometimes it does.

In conclusion: please don’t judge all bloggers by a few idiots. Many bloggers are good people doing good work and talking about things that need to be discussed, and which the media doesn’t always touch – and many of us see our blogs as a lifeline. We can’t say it with sound, but we can say it with writing.

July 27, 2010

“But you can’t have Aspergers!”

Filed under: fuckwittage,stereotypes — kankurette @ 5:47 pm

I think I missed some kind of meeting. Apparently I am supposed to look at the floor, flap my hands, mutter strange nonsensical things, talk in a stilted monotone about trains or volcanoes, be a maths genius and a savant, and possibly have a quick one off the wrist in public or drool over myself or something. When I tell people I have Aspergers Syndrome, generally the reaction is “no way, you can’t have Aspergers.” In other words, gor blimey Charlie, we have a normal person here. My normal reaction is, “you’d notice if you lived with me.” To be fair, if someone very briefly met me, they can’t be expected to know all my quirks and eccentricities and habits which drove my family up the wall. But it does, if I’m honest, annoy me a bit.

When I was in my first year of university, doing a degree in German and Spanish – the latter from scratch as I only knew some rudimentary Spanish from a night class I took in my gap year – I went to the campus doctor to get, I don’t know, a morning after pill or something. I forget what. He was asking me about my degree and he may or may not have had access to my medical records, but the subject of Aspergers came up and he said, “I don’t believe you have Aspergers Syndrome because you’re doing a languages degree. People with Aspergers normally do maths or science degrees.”


Yes, some people with Aspergers are indeed maths and science experts. Daniel Tammet, for instance. (He apparently can recite pi to 22,514 numbers, whereas I can only remember three. Jammy git.) But not all of us are. Being surprised that I am actually not that great with figures is one thing, but outright telling me that I can’t have Aspergers because I’m doing an arts subject is, frankly, bollocks. I had been diagnosed with it by at least two different doctors by the time I came to Manchester.

I really do not like being shoved into a box by people who ought to know better and can’t see beyond the stereotypical view they have of people with Aspergers or autism as the number-crunching, statistics-remembering, socially incompetent savant. We are not a hive mind, we are at various different points on the spectrum (if you’re thinking of it as a rainbow, some of us are red, some of us are blue, some of us are green yellow etc.), and we can and do deviate from the stereotype.

“You can’t have Aspergers, you’re outgoing!” No, I’m not. I’m actually quite shy. There are situations where I have to be outgoing, such as when I was at the Freshers’ Fair trying to entice fresh meat into joining the Rock Soc, or at a job interview, but it doesn’t come naturally. It is something I really have to work at. I can schmooze, but it’s a total strain. I’m certainly outgoing when I’m with my friends as I feel I can totally be myself, but around people I don’t know, I’m more reserved and the part of me that I don’t want them to see doesn’t come out. I force it back down and hope it keeps quiet.

“You can’t have Aspergers, you have great eye contact!” Again, it’s something I’ve had to work at and does not come naturally, and when I get nervous, my eye contact falters. I can’t count the amount of times I’ve looked at my supervisor’s table when I’m in his office, or I’ve looked at the floor or the wall when talking to people and not being in a good mood at the time.

Maybe this is my paranoia talking, but sometimes I wonder if I even look like a stereotypical person with Aspergers, whatever they look like. And I’m not just talking about having two X chromosomes. I wash my hair, my posture is no worse than most people’s, I don’t stand a nanometre away from people when talking to them or get all up in their personal space, I don’t smell funny (I hope not, anyway – thanks to my mum kindly pointing out whenever I had BO as a teenager, I’ve had a bit of a thing about not smelling bad), my clothes are generally clean(ish), I don’t flap my hands etc., although I do wear glasses, due to crap eyesight being hereditary in my family and doing a job that involves sitting in front of a a computer. Are people actually thinking, “Heavens to Murgatroyd, she can’t have Aspergers, she washes and stuff”? Probably not, but sometimes I do wonder.

Maybe I’m being a total bitch. After all, I suppose I should take it as a compliment that I seem neurotypical (and yes, I know that word is annoying to some but it really is less of a mouthful than ‘people who have not as yet been diagnosed with a mental disorder’). On the one hand, perhaps they’re saying I cope pretty damn well with my disorder and that I’ve managed to suppress some of my more unsavoury characteristics in order to get ahead in life. On the other hand, it does feel as though a big part of me is being denied. I am not Aspergers and Aspergers is not me, but it has made me who I am.

What really does grind my gears is when people tell me to stop labelling myself, that Aspergers is just a label, that it’s no different from social awkwardness. No I won’t, no it isn’t, and yes it is. It is not a question of sticking a dirty great label on myself to remind whoever is stacking the shelves in the supermarket of life that I am to go in the Aspergers section and not, say, the wheat-free section. I am not a bloody tin of food. Aspergers is not a label; it is a part of me, it is as much a part of me as my mad hair, my wonky eyes or my toenails. And as much as it seems like that part of me doesn’t exist, it does. I’m not asking you to put me on a pedestal; I’m asking that it be acknowledged and accepted as one of the parts that makes up my identity.

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