About me, without me & how people respond to legitimate questions

12 02 2015

I was interested in attending a conference being held in Glasgow by an organisation called Autistic Intelligence. They claim to be “a loosely affiliated group of worldwide experts in aspects of autism, a consultancy.” Comprised of writers, educators, therapists, researchers, and campaigners who all claim to have personal experience of autism in one way or another. The first person featured in their “About Us” section is none other than Professor Tony Attwood, a world renowned researcher in Aspergers. So far so good, right?

Well as an autistic person I was a little disgruntled at the price of their Glasgow conference for the unwaged, the low waged and autistic people. The sold out early bird ticket price was £60 rising to £70, an awful lot if you have no or little income. In my mind this excludes many people on the spectrum who do not have wealthy backgrounds or healthy incomes. So I emailed the organisation using their website contact form. It wasn’t my most articulate piece of writing but it got my message across in a particularly autistic style.

Personal information has been started out but nothing has been edited or removed from the following communication.

Hello Admin
You have a new contact request:

I was reading with interest about the upcoming conference in Glasgow but am disappointed to discover that even the now sold out “early bird” tickets for unwaged autistic people is out with our ability to pay. How can you expect autistic people to participate in wider society when a conference set up specifically to talk about us excludes us unless we are from wealthy backgrounds? Given the low employment rate of autistic people, there’s a far higher likelihood that they will belong to the unwaged/low waged category and given that £60 is only £12 less than the weekly income on JSA, the conference is an impossibility for up to 85% of the autistic community. Is this something an organisation set up on the backs of autistic people intended? Is exclusion from discussions and presentations about us the way forward? Added to this is the fact that parents tickets are even more expensive and there is no mention of carers. I could not afford to pay for one ticket let alone a necessary second to bring my carer with me. I am extremely disappointed but not surprised by this exclusion of autistic people.
From: ********@student.***.ac.uk – **********
Telephone:
Subject: Criticism
Senders IP: **.***.***.**

I was perhaps slightly blunt in my email but I’m getting more than irritated with the ‘all about me without me’ rhetoric of so many of these so called autism organisations.

The organisational contact responded within the hour. I have starred out information that I feel is inappropriate to share, although the author at the time obviously did not.

The cost price of this conference – venue, food and drink for attendees, speaker fees and transport and accommodation, handouts, and online-ticket-selling costs – is 70, provided 100 people attend, and there’s no certainty of that. I also give extra 20% discounts to anyone with financial problems.

Meanwhile I don’t get paid for running the whole show, choosing venues and speakers, answering the phone, doing publicity, writing invoices, answering emails like this, most of which are insulting as to my motives.

I am ** *********. I’ve just had a ***** *******, the first in ten years, as I was going up the stairs to bed. I fell backwards and fractured a rib, and did some major damage to the soft tissue in my chest. I was out cold for 3 hours, and on my own. I came out of hospital on Saturday. It will take me 2 months to recover, but I still have to be there in Glasgow to do registrations, and I still have to fund any shortfall on the costs from my own savings if we don’t break even.

If you have a problem, phone for clarifications before jumping to conclusions, please.

B****** J*****

I haven’t stopped laughing at this response. Not at the poor author’s misfortune, they obviously have had a very difficult time of it lately, but at how out of touch it seems to be with “intelligent” autistic people and their predicament: assuming verbal communication or desire to use a telephone; being excluded from discussions and conferences about their very existence due to financial barriers; and the attitudes of ‘professionals’ and many parents of what autistic participation is possible or even permitted.

Come to your own conclusions as to what to take away from this communication. I sure did.

My aim is to ensure autistic communication is heard, respected and valued. I want that our experiences are listened to and built upon when offering services or developing conferences about us. I’ll let you decide whether or not this organisation’s response does any of that.

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‘Twas the night before independence…

17 09 2014

I haven’t written about the Scottish independence campaign before now because so many others have done so before me and considerably better.

I’m writing tonight, the night before the referendum for posterity. To remind myself what it is I’m voting for and why.

I’m voting YES.

I’m voting yes for a number of reasons, I’ll probably forget some in my list.

Mostly I’m voting yes for my daughter and any children she may have, and their children, for whom the idea of being governed by another country should be as alien as foodbanks. I don’t expect a Scottish utopia or immediate changes. I wouldn’t even be surprised if things got a little challenging for a while. The real benefits of independence won’t be experienced until my daughter is an adult. I’d hope that includes a free higher education for a mind that already shows signs of heading to university. I don’t want her starting life with £60k debt. Yes I do believe society has a responsibility to educate.

Each of my reasons for voting yes relate back to my daughter in one way or another. I want her to experience true democracy. No one who considers Scotland a country in it’s own right can believe the current political situation is democratic. We sometimes get the government the country votes for but always we get the government England, c.85% of the electorate, vote for. If a country is unhappy with their chosen government then they should have the pinnacle of methods accountability at their hands, the ability to vote that government out should they fail to deliver. With less than 9% of the electorate of the UK, Scotland can never do this without the help of England, Wales and Northern Ireland. If we don’t vote for Tories & England does, we get Tories & we have no power to hold them accountable because we have none (or one) to remove from their seat in the commons. A country should control it’s government.

I’ve heard the argument that we already have our own parliament dealing with devolved issues but this doesn’t give us any control over social security, defence, foreign affairs or even the budget we receive from Westminster. Now the Westminster budgets are a little strange. Why pay all our tax to London to be given a little bit of pocket money back? Our funding will be cut, I have no doubts about that. We’ll pay the same if not more in taxes and get less pocket money back. We all know how funding cuts will affect services we currently have. This will eventually lead to NHS cuts. Westminster parties are right when they say that Holyrood is responsible for our devolved health service spending but we can only spend the pocket money we are given. If that’s cut, inevitably the nhs will come to be cut. There are only so many police, social care and education etc cuts we can take before the nhs is highlighted for its share of cuts. It’s disingenuous for Westminster to claim that’s not in their hands, it may be indirect but they hold the purse strings. I do love the NHS

This leads to another reason, I firmly believe the money we give to London to be spent on trident and illegal wars we don’t want to get into, could be better spent on more progressive and productive things like health, education and social security. I don’t want nuclear bombs on my doorstep. I don’t want my daughters life in the hands of megalomaniac millionaires with their finger on a red button. When I was a child, my parents took me on CND marches and I’ve grown up opposed to nuclear weapons. I don’t want them here, they’re not a deterrent, they’re a target. They need to go. Not down south but be gone forever.

And while still on about money. I don’t give a shit what currency we use. Like it or not we live in a capitalist world, there will be a solution be it currency union, sterlingisation, smackerooni or dust bunnies – too many people want to shaft us for all we’re worth to let us relax in an egalitarian bartering society.

The same theory applies with banking and supermarkets and other businesses threatening us in the event of a yes vote. Capitalism won’t sit and wait for them to catch up. Someone else will come along and take over. For banks I hope it will be credit unions, for shops I hope there is a regrowth of independent traders. People will always want to make money. At it’s most basic, capitalism allows for competition – let the banks go. Let asda raise their prices, people will take their business elsewhere.

Now everyone goes on about the bloody oil. Either we’re bathing in the stuff or it’s running out. It’s been running out since the day we took the first barrel. That’s no surprise… In my opinion, the oil is a bonus but not something to build a country on. We have a good percentage of Europe’s renewable energy in Scotland, we should be looking to that for the future, let oil be the cherry on the
cake, not the main ingredient.

Talking of cherrys on cakes. Lots of campaigners believe independence will rid Scotland of the Tories. As nice as that would be, I don’t believe this to be the case. Prior to Thatcher, Scotland was a fairly conservative country. I don’t think everyone here is an anarcho communist or even remotely socialist. We are generally a country that seeks a fairer society but true democracy will give the Tories equal chance to lay out their positions and some will prefer them to the alternatives. Similarly I am not and never have been an SNP supporter. I can’t say I never will be but I highly doubt it. I currently like the Greens having been abandoned by labour. An independent Scotland with it’s fairer electoral system will allow smaller parties access to parliament & the chance to grow & govern.

Acht there are probably many more reasons but it’s late so that’s it for now…





Letter to TV people re: eating

3 07 2014

Dear actors, directors, screenwriters, advertisers etc,

The act of putting food in a film or TV character’s mouth, in a dining setting, is enough to give us simple viewers a clue that perhaps the character is eating or about to start eating. There is no need to force actors to eat with their Hollywood/BBC funded gobs wide open showing us the contents while making repulsive, 90db sleaurching noises. We know they are eating ; the visuals of putting food in the mouth followed by chewing is a huge indicator of this fact. There is no need to perpetuate bad manners by forcing us to listen in surround sound to the chomping and slurping of breakfast,lunch, dinner or snacks.
Please stop it.

No love
The people of the world with manners





Unashamedly metalhead

28 06 2014

Tonight during the Metallica set at Glastonbury I was reminded of how it was growing up a ‘mosher’ in a land of very ordinary people who like U2 and Coldplay or Elbow. Everyone has their own musical preferences. Get the fuck over it. I was naive to think that 20years since I last had to deal with such prejudices, they might have gone away. I believed either society had become more accepting of people who liked different music (yes music, ffs) or they at least had matured a bit and stopped caring what others chose to listen to. Well didn’t I get that wrong? Turns out people who like bands like Metallica are “subhuman”, an “underclass”, “brainless twats”, “angry” and “moronic” and that didn’t even start to describe how people felt about the band themselves, only their fans.

Growing up a metalhead at a time everyone else was fainting at the sight of Take That or truly believing Oasis spoke only of their personal experience and no one understood how it felt to be a Wonderwall (yup someone once said that outside a gig , wtf?), made life difficult at times. I was beaten up, followed around town by adults(!) being verbally abusive to me, threatened and had random items thrown at me (usually chips or glass bottles). All because the music I listened to was “heavy metal” for weirdos. If I wasn’t angry before, fucking hell was I angry afterwards.

Who really gives a fuck what kind of music someone listens to? It’s 2014 for christ’s sake, I shouldn’t have to, and usually don’t, feel the need to justify to others why I listen to the music I do. I get annoyed at having people judge me and my intellectual capacity because I enjoy a certain style of music. I was told by a professor that you don’t get lawyers who like heavy metal as “they don’t have the brains” and are better suited to “hanging around the sewers with the junkies”. These put downs and general abuse is deemed socially acceptable all because for many years metal fans were considered and treated as being social outcasts. No wonder they seem angry all the time. If this treatment was based on political preference anger would be not only acceptable but expected.

I was saddened to see that negative attitude hasn’t gone anywhere partly because no one can tell what I like online. I’m physically much safer behind my computer screen. Tonight surprised me, especially when the ‘it’s only banter’ response was coming from self confessed egalitarians (and no this is not aimed at any one person, there were quite a few open minded kind souls reacting like this). Equality for all… Unless you listen to heavy metal. You apparently are an acceptable underclass.

Well I am bloody proud of being a member of that underclass. I’m unashamedly a metalhead. I don’t even like Metallica that much. I do quite like Mumford & Sons. Sue me.





But you look so normal

25 06 2014

There are probably hundreds of blogs with that title on the net today. It’s something many people with an unseen disability have been told. My response is usually ‘I am normal’ , even although my disability is one that highlights how abnormal I am, or how abnormal I should be just to appease society.

It’s no secret that I have autism. The shell looks fine if a little rotund, the inner workings are somewhat wonkily wired. I’ve often joked that to be a convincing autistic I need to rock back and forth and talk incessantly about trains or numbers. People would be more comfortable with me fitting that stereotype, one where I can garner sympathy, but I don’t. I can articulate rather well, I can even successfully take part in small talk and social chat. I have thousands of acquaintances. Socially I do ok. I am a strong independent person, even if I can’t cook. You will never see what’s going on under the surface to get me to that level of interaction. I look just like you. Normal.

You, who can socialise instinctively. Normal. You, who knows the cues to talk or shut up. Normal. You, who pick up on more subtle forms of communication such as body language or facial expression. Normal. You , who is unlikely to struggle with sensory overload or processing basic information. Normal. You, who probably doesn’t become catatonic at the sound of sirens. (There you go Lex Luther, there’s my weakness) Normal.

But you struggle to read me in the same way I struggle to read you and because you are in the majority, it’s expected I will change to fit in with you. In fact, autism is a developmental disability, I am expected to ‘develop’ my skills and understanding to become normal. Some people make a fortune out of trying to get people like me to develop normal skills so I can pretend I am normal to be like you.

Well you know what? I’m really fucking successful at doing normal. Too successful. I have to convince people of my disability. I have to persistently justify my struggles (or symptoms if you prefer such language), even to people who have known me all my life. They say, “but you’re just you, I don’t care what they label you, you’re still the same to me” and in this statement those who claim to accept me refuse to learn about how my brain works, what my struggles are, or how they could help me overcome them. They silence me with their questioning, ‘what is normal anyway?’ Immediately followed by telling me I should try to understand that I’m different and I can’t expect normal people to understand. If this is acceptance then I don’t get it.

And if I struggle to justify how my brain works to those who know me best, what chance have I got of convincing those who don’t know me that I need help and support or understanding? If my disability was visible, if I hadn’t learned not to stim or hide being ‘symptomatic’ (there I go again with that medical language) I don’t think I’d have to justify myself over and over again. I’m definitely not saying those with visible disabilities don’t have problems with justification, hell I’ve read about ATOS and the WCA, but if someone can see the problem they’re more likely to try and understand it. It’s easier to try to imagine mobility issues than it is an entirely different way of processing and thinking. Physical disability is visibly justified, it makes sense to them that there could be difficulties or support needs. When you look just like them and can pretend on the whole to act just like them, when you finally get the courage to say ‘I need help’, you’re met with ‘prove it’ and if I try to prove it, I’m made to feel like a fraud or a con-artist. Only then to be told, ‘prove it more’.

I shouldn’t be made to feel like I’m faking it just because someone else struggles or refuses to understand. Why should I have to fit in with your world? Why can’t you try to fit in with mine? I do look normal. I am normal. Like any normal person I have struggles and sometimes these require me to ask for help. How I appear on the outside shouldn’t define what I need or get.





A new romance

28 09 2013

As I place your long, slim, stiff, shaft
Deep into my dark, damp canal.
I writhe in blissful pleasure.
My knees go weak.
My legs cannot take the weight of my quivering body
I struggle to maintain composure
I don’t care if our physical love is forbidden,
Nothing can keep us apart…

Oh cotton buds how I love scratching my ears with you.





Modern friendship?

5 06 2013

Person 1: You will be my friend if you like green, but I won’t be your friend if you won’t declare you hate purple.

Person 2: Ok, so I like green and I’m a member of the anti-purple league, I’m cool. But you once said something horrible about potatoes and I support potato liberation, so I won’t be your friend.

Person 3: I support potato liberation too but I find green a bit grassy. Can we still be friends? By the way I’m not a fan of Michael Bublé, if you like him we won’t be friends.

Person 4: I don’t like Michael Bublé and I don’t like green but I’m indifferent about potatoes.

Person 1: Then you are my enemy.
Person 2: Then you are my enemy.
Person 3: Then you are my enemy.
Person 4: *returns to real world where life has shades of grey*