It’s just that I’m autistic and don’t always understand how I come across.
Sometimes it’s not always obvious online, that I’m a seriously disabled client of the local Learning Disability Partnership.
It's true, I'm a sick puppy...
In fact, I’m exactly the sort of person that the Brandon Trust provides services for. (Co-incidentally, I know someone just like me, who actually gets help from Brandon).
my teachers had very high aspirations for me
The problem is my teachers had very high aspirations for me and taught me lots of big words, but unfortunately I don’t have the social skills and social understanding to go with them.
I’m going use quite a lot of big words in this letter...
The Mixtures - The Pushbike Song - Number 2 on TNR's poptastic Top 10
I’m writing to you to ask you to consider resigning your position as Ambassador for the Brandon Trust.
I have a problem with not just some of the content of your speech at the conference, but also the manner in which it was delivered.
the “learning disabilities voice”
At the start of it, you were doing the “learning disabilities voice” - not quite as intense as seen, say in Little Britain, but you displayed a definite awww-does-he-take-sugar? tang to your words. (Too kind for sure: you were doing a Silly Voice).
There are many reasons why you shouldn’t use this affected kind of speech when you are talking to people with learning disabilities. I’ll go through a some:
Big Yellow Taxi by Joni Mitchell
Firstly, there is no scientific data nor clinical experience that suggests using juvenile diction aids comprehension. I would like to suggest that for the cognitively challenged, in some circumstances, it can actually make comprehension more difficult.
an adult with a learning disability is not a child
Secondly, an adult with a learning disability is not a child. Not legally; not morally. It is not appropriate to address an adult in the same manner as a 2 year old child (for whom this kind of voice is normally reserved).
retain good social cognition
Thirdly, some people, even with significant intellectual disabilities, retain good social cognition and engagement. Even though they may not even be able to mentalize the idea of “condescending eejit”, trust me, they still know when someone is doing a silly voice, and because of it, they will think less of them.
Probably Number 1 on @BendyGirl's Top 10 personal hits.
What worries me personally about silly voices, is that over the last four decades of being reliant on learning disability services, I’ve learned that the silly voice usually indicates that the speaker’s brain has ceased normal functioning. All the normal rules and modes of behaviour go straight out the window as we touch down on Planet Slow-boy.
behaved and acted entirely conventionally
Let me give you an example, once upon a time I hurt my back really quite badly. I’d seen the doctor at home about 3 days before - he had behaved and acted entirely conventionally and he had given me a prescription for a huge bag of painkillers.
Now, how can weeeee heeeeeelp yooooou, Georgieeeee...?”
I rang the surgery. Before I had a chance to say anything, the doc has obviously spotted “Learning Disabilities Partnership” in my medical notes and begins “Now, how can weeeee heeeeeelp yooooou, Georgieeeee...?”
It threw me completely. I had some difficult things to say to him, and I find speaking a chore at the best of times.
Leaving on a Jet Plane - John DEnver
I needed to say “Look doc, my back is so bad and I am in so much pain that I couldn’t sit down on the toilet and so attempted to take a shit on the floor... and I need a painkilling shot and an enema... and I need to be in hospital until my back is better because I haven’t got anyone to look after me... and I can’t cope on my own”
UrrghArrrghUrrrrrrrrgh!.
All I managed was, “UrrghArrrghUrrrrrrrrgh!... I can’t cope! Hospital!”
He said nothing about my bad back, which 3 days before had had him struggling to lift my 10 stone off the kitchen floor as I screamed non-stop in pain; nothing about how the painkillers were working.
put me in the nuthouse
He just said he was going to put me in the nuthouse.
I put the phone down. Perhaps I should’ve been put in the nuthouse - after all by the time I’d finished talking to him, I did want to kill myself, but I’m sure it was mainly because of the humiliation and the pain that had kept me awake for two nights and grown so large as to fill the entire known universe.
Sailing - Rod Stewart
But getting back to the point, I was so distracted by the tone of your voice and the sight of what to me looked like a security guard standing behind you, that I literally don’t remember anything until you announced we were going to have a “musical quiz”.
we were to shout out the names
And we were to shout out the names of the forms of transport mentioned in the songs to be played.
Foolishly I expected a selection of tunes like Ferry Across the Mersey, Leaving on a Jet Plane and perhaps even one of Queen’s hits (whom I know you’re fond of) like Bicycle Race.
“The Wheels On The Bus Go Round and Round”
What we got, amongst others, was a Noddy song and “The Wheels On The Bus Go Round and Round”. Children’s songs - for children. You were not addressing an audience of children. You were addressing an audience of adults, some of whom had learning disabilities.
these are subversive choices in the ld world
You later spoke about your DJ’ing, saying “Trust me, these are subversive choices in the ld world”. No they are not. They are just crass, juvenile and inappropriate.
Cat Stevens - Longer Boats
I’d like to offer you two examples of people who are both effectively non-verbal, and have significant mental and physical disabilities.
The first is Titan. He lives in Australia with his partner and writes eloquently about his life.
The second is Kingdom of Rats, who lives in an English care home, and has a rich and full, albeit seldom easy, life.
sex life of whips, chains and bondage
Titan and his partner Nate, are unlikely to favour Noddy or the Wheels on the Bus as a soundtrack to their quite mouth-puckering sex life of whips, chains and bondage. And I understand Kingdom of Rats is more of a death-metal fan.
Queen - Bicycle Race
However what concerns me most and the part of your speech that I found most personally hurtful, was when you suggested that our own mal-attitudes are partly responsible for the level of abuse we suffer in public.
spanking-good coves
You gave as single example of how you as a physically disabled person were accosted late one night by a gang of youths... Who all turned out to be spanking-good coves and not the crack-smoking muggers you first took them for.
shocking level of disability hate crime
The shocking level of disability hate crime and (of particular importance to the learning disabled) “mate crime” is testament to the reality of life for people like me in the community.
no place in the public discourse
Your crassly-stated, psycho-babble fallacy supported by single anecdote, has absolutely no place in the public discourse surrounding disability hate crime
.
The Cars - Drive
Recently I saw the venerable and now sadly retired Dr Zaman from the Specialist Learning Disability Department at the Big Hospital. I was there because of an incident that led to the police being called. After four years of bullying and harassment, I finally snapped:
or the man that left broken glass
I'm not going to go out now. It's too dangerous. I'm almost certainly going to bump into one of the neighbours, the woman that conned me out of hundreds of pounds, the nonce I caught videoing me, the guy that left the dog shit on my door-step, the woman that put the poison pen letter through my door, or the man that left broken glass. Then there was when they tried to rip the car-port down. Burgle the house. Threaten me in the street... You’ve got to learn to be less open
Dr Zaman said to me (not at all unkindly - for he was a wonderfully straight-talking man), and I quote him word-for-word
“You’ve got to learn to be less open and give less information away about yourself. That’s how this woman has managed to cause you so many problems”
Being friendly is what got me into this mess in the first place
First rule of disability hate crime (both of you): Don’t Blame The Victim!
an apple is not an orange.
And I’m sorry, I just don’t accept your assertion of some kind of equivalence in our respective mental and physical disabilities. I don’t believe that one exists, in the same way that an apple is not an orange.
magisteria of equal magnitude
Non-overlapping magisteria of equal magnitude, perhaps. But there is no equivalence.
You don’t have a mental disability nor are you the parent or a carer of someone with one. You seem to have very little idea of the complexity and multi-dimensional nature of mental disabilities.
the Brothers and Sisters have got a Black Power Thning
Anyone got an 8 ball?
Look, to put it another way, me and the Brothers and Sisters have got a Black Power thing going on here - you’re the New York, gay-pride activist that’s turned-up and decided to fight our race war for us.
barged us out of the way
You’ve barged us out of the way, and you’re now doing Face the Nation with Bob Schieffer, while we’re all out on the sidewalk, getting brutalised by Officer Krupke.
something else that bothers
But there’s something else that bothers me. It’s how you and your friends treat me and people like me. You see, there’s two layers of “The Campaign” that don’t mix. At the top is yourself and as far as I can tell, just two or three other people calling all the shots. Then there’s the lumpenproletariat.
a baseless ad hominem attack
Your response to wholly legitimate and justified criticism is to describe it as “constant sniping”, or your colleague claiming an “axe to grind” and “a chip on his shoulder”. You made a baseless ad hominem attack, claiming I’m not in the target audience (without knowing anything about me) as a way of discrediting my criticism.
no right to ignore the message
Just because you don’t like the medium (or largely in this case, you’ve failed to accommodate your critic’s disabilities and consequent lack of social nous), you have no right to ignore the message.
Nothing About Us, Without Us! LARM
I don’t need you to speak for me. I can speak for myself.
So can most of us, if we’re given the chance.
It’s just neurologically advantaged people like you are hogging the limelight, and in this case actively encouraging people to ignore the messenger.
The Brandon trust currently have two “Ambassadors”, yourself and a folk band called Fisherman’s Friend.
doesn’t make you an instant expert
I understand the idea of a charity having high profile celebrities to promote their cause, but becoming one doesn’t make you an instant expert on learning disabilities.
ATOS Killa Fish - a Fisherman's Friend?
It doesn’t mean your experiences with physical disabilities can be translated into or made relevant to our experiences with mental disabilities.
inappropriate
It doesn’t give you the right to offer, what seems to me, dangerous and inappropriate advice on how people with learning disabilities should live their lives.
Alan Partridge-style
I’d like to contrast the Brandon Trust’s Alan Partridge-style event on Saturday, to the slick and respectful handling of such events and promotional activities involving people with mental disabilities, by the National Autistic Society (NAS).
NAS Autistic Babes, smokin!
I don’t think your the right sort of person at the moment to represent the views and interests of people like me to the staff at the Brandon Trust and to the outside world.
appropriate training
If you must remain in this post, then I think I have the right to ask that you take undertake the appropriate training.
If the Brandon Trust can afford a chauffeur driven car, to carry you from up-north and an hotel room for the night, then they can afford to send you on an NAS training course.
the elephant-in-the-room
(I’m trying to ignore the elephant-in-the-room of Fisherman’s Friend - I have no problem with them as long as they stick to wassailing and getting drunk).
I’d have no problem with you, if you didn’t do silly voices and didn’t treat people like me at best like we are toddlers, or at worse as ‘trolls’ or ‘radicals’ to be blocked, de-friended and privately slated in discrete girly chats. From here, it looks like you’ve sold out to a cheesy nibble in a hotel bar and the prospect of a go on Newsnight.
That is all.
I sign off with, as is customary in our community,
Nothing about us without us!
Fritz V.
Further criticism and mention of TNR here in the comments.
Spartacus - working with all sorts of people “behind the scenes”
In a world where the seemingly unstoppable rise of the Social Model of Disability has redefined no arms, no legs and terminally ill as fit-for-work, two refreshingly honest Facebook support groups have grown from the ashes of the now defunct Spartacus page.
The Spartacus people have gone off to work in secret with their new Lizard overlords in the ConDem government and
concentrate on research, analysis, report-writing and working with all sorts of people and groups behind the scenes
One wag commented
"behind the scenes" - go right ahead. Don't mind us. and later on in reply to the question 'why was the group closing down?', It was getting in the way of media appearances.
The less career-minded have therefore established these two groups to continue the work
This group has been set up to provide peer support to sick and disabled people affected by welfare reform and cuts to benefits and support services. Support can include making each other laugh because that can be so good for de-stressing!
...is an action and debate group this is a group for campaigners, Activists and supporters to discuss disability issues, from cuts to welfare through to more general problems with participating in society and more... It is non partisan and non discriminatory.
It's a letter to my doctor, telling her that my Totschreibenhas arrived, and asking can she help me? I first mentioned it to her about 7 months ago. I said how the stress was driving me crazy and was going to kill me.
charcoal, whiskey and sleeping tablets
Well, the letter came, within a few days, I'd managed to get the charcoal, whisky and sleeping tablets together, but drank the whisky, mainly to cope with going out to get the other bits and pieces, and rationed the tablets so I could get enough rest to complete the other preparations... which by this point once again included getting whisky and tablets.
round in circles, in a sea of distress
It's taken me about a week to notice the flaw in this plan. I was autistically over-focus on the mechanics of dying while swimming round and round in circles, in a sea of distress...
seething strait-jacket of pain
Anyway the other day, (another) stress fracture in my left heel jolted me out of my misery into a seething strait-jacket of pain that had me faffin' for hours about whether to call the doctor the ambulance. I decided to self-medicate with whisky instead. The thought of all that social interaction necessary to get a bone set, just wasn't worth the effort.
leaves you effectively functionally crippled
This kind of pain that even when it's leaves you effectively functionally crippled, is as nothing compared to the fear of using the telephone, or answering the front door... And, going to the shops, tops the lot, with a shiny black malicious Morello cherry.
I'm not going to go out now. It's too dangerous. I'm almost certainly going to bump into one of the neighbours, the woman that conned me out of hundreds of pounds, the nonce I caught videoing me, the guy that left the dog shit on my door-step, the woman that put the poison pen letter through my door, or the man that left broken glass. Then there was when they tried to rip the car-port down. Burgle the house. Threaten me in the street...
the reality for an isolated slow boy
This is the reality for an isolated slow boy, with no family or friends, stuck in a village council-house in the middle of Anglo-Saxon Toryville...
Other news: Our Lives, Our Voices
Voice of the disabled and advocate and mother extraordinaire @MrsNickyClarke blocked me on Twitter, and when I politely asked her why, via a short comment on her blog, she ignored me.
I think it may have something to do with the saintly @BendyGirl getting a less than glowing review from The New Republic for her presentation at the Brandon Trust's 2nd 100 Voices conference, yesterday.
Clearly discussion, reportage, satire and demanding that our voices should take precidence over the voices of those that barge to the front, loaded with the neurological privilege, gets you demonized, branded a Troll and then systematically blocked and banned from the Debate.
Saturday morning arrives at about 7.30 am. I try to ignore the bottle of whisky that’s sitting by the kettle as I fumble to generate enough coffee to kick-start the day.
cheap drink, strong dope and tranquillizers
I don’t remember how it got there. I kinda guess it’s related to the “oh-my-god-life-is-so-shit-I-want-to-die” episode I had last night. As usual, cheap drink, strong dope and tranquillizers got me through.
streamed live on Teh Intawebz...
Firing-up my geriatric computer to attack the headlines aus Die Zeit mit meine schlechte Deutsche, I notice on Twitter the Brandon Trust are having another “100 People: 100 Voices” Learning Disabilities Conference, and it is to be streamed live on Teh Intawebz... The flyer says “This is your opportunity to tell us what is important to you”.
Live from Teh Intawebz - Mr Personality
The Brandon Trust, originally a just residential care company, say about themselves in their Vision Statement
Brandon Trust sees a future where people with learning disabilities will exercise full citizenship with all its rights and responsibilities within UK society, where every person will be empowered and supported as necessary to safely live their life to its full potential.
Hitting the video feed, I'm greeted with the corpulent sight of Matt Britt, one of the the Brandon Trust’s umm... “Employment and Support” advisers. (Little did I realise at this point, that this horror show was going to contain more than one Matt).
“Why haven’t you got a job?”
Looking distinctly Pooh Bear-ish in his spanking new blue Brandon Trust T Shirt, Matt I (as we will call him for ease of identification) outlines a future where asking the Brandon Trust for help and social care will get the response
Why haven’t you got a job?
I’m serious. (I’ve got the short-hand notes in case of High Court actions).
putting pressure on the disabled, their parents and carers
Matt speaks of putting pressure on the disabled, their parents and carers to change the current habit of asking
Do you want a job?
into
You will go pack incontinence pads at one of our ‘work-projects’, on a short-term temporary contract, wholly dependent on massive hidden government subsidies, mainly paid through cutting your benefits and support to as close to zero as humanly possible. he’s “enabled” many of his clients to join “Job Clubs”
He also speaks glowingly of how he’s “enabled” many of his clients to join “Job Clubs” where despite their numerous and serious disabilities, they will disappear from the disability statistics and glory in their new found status as fully enabled, supported and largely unemployable Job Seekers.
the blonde, poodle-haired, irredeemably chirpy PR guy
Next up is Matt II, Matt Boyle, the blonde, irredeemably chirpy, poodle-haired, PR guy from the Brandon Trust who is conducting an “interview” with one of their “local user forums”.
Live From Norwich... It's Gorgeous!
excruciating sub-Alan Partridge repartee
He begins with excruciating sub-Alan Partridge repartee
Your mum and dad brought you down!?
(Everything Matt II says comes with an exclamation and question mark.)
I need a bus pass
replies the less than enthusiastic interviewee. Matt II rapidly moves on to his next victim.
Any experiences you want to share about the buses!? You have something positive to share about the buses!?
A long painful silence follows. Do you have a bus pass!?
No, I'm scared.
Another painful silence follows, although fortunately slightly shorter than before.
Do you have a bus pass!? Hey! That's a great photo on there!
Matt II ploughs on, to no reply. Undaunted, he continues, addressing what seems entirely empty space, Hey! That's a great photo on there!
Another of the user panel erupts UrrghArrrghUrrrrrrrrgh!, at this point, I find myself joining the interlocutor in an unholy counterpoint...
Full Metal Jacket Matty continues
Any experiences you want to share about the buses!?, Full Metal Jacket Matty continues.
I get teased...
Desperately he turns, seemly at random, only to hit point-blank by
The bus stop is so far away, I have to get a taxi to it I scream. Literally, I scream
I scream. Literally, I scream. I’m autistic you see. I have alexithymia. Difficulty expressing my thoughts and feelings so instead I just go UrrghArrrghUrrrrrrrrgh! and smash things up.
Frequently it’s the telephone. I’ve got through 4 in the last year. I always make a point of buying the cheap ones, knowing they’re not going to last long.
the endless stream of negativity
Matt II continues, the endless stream of negativity from the panellists can’t be ignored and he is begrudgingly dragged into engaging with their concerns... I leave the room at this point.
ignore the whining from the lonesome whisky bottle
It’s about 11.30 am and I can no longer ignore the whining from the lonesome whisky bottle. Despite this failure, I do manage to ignore the seductive susurration emanating from the tranquillizer cupboard. They can't be wasted on generalized existential angst. They're for life-or-death situations.
I return to the forum, dainty porcelain cup of whisky and a suspiciously large and stinky brown roll-up in hand.
Speaking in a particularly sexy low-cut maroon ensemble
Bendy Girl, Kaliya Franklin is powering up an improvised ramp onto the stage accompanied by rapturous applause. Speaking in a particularly sexy low-cut maroon ensemble, she appears to be accompanied by what looks like a G4S security guard in a blazer and tie. I try to ignore this fact. I don’t succeed.
silly-voice-o-meter hitting about 5.5
Kaliya gave a brief introduction, but almost certainly due to the psychic trauma of what followed, the recollection entirely escapes me, save for the flash-back of the silly-voice-o-meter hitting about 5.5 on a scale of 0 to 10,
one of the most grievous errors of judgement
In what must surely rank as one of the most grievous errors of judgement since Bill Clinton did-not-have sexual relations with “That Woman”, Bendy Girl announces that we are going to have a “musical quiz”.
a “musical quiz”
My spare bedroom, (which is about to attract a £13 a week reduction in my housing benefit), erupts to the sound of The Wheels of the Bus...
“The wheels of the bus, go round and round, go round and round...”
the ringing afterglow of this thermonuclear stupidity
In the ringing afterglow of this thermonuclear stupidity which at one point included Noddy (sorry but it's true), I was so distressed that for a moment, reality began to slip away. UrrghArrrghUrrrrrrrrgh!goes the scream of the slo-boi on and on, on and on...
Presumably feeling that her experience of physical disability equates with ours with mental disabilities, Bendy Girl goes on to say that we are partly to blame for the bullying and harassment we suffer... and that it is the sequela of expecting the worst of people... and we need to be more open with our attitudes...
UrrghArrrghUrrrrrrrrghArrrgh!
"UrrghArrrghUrrrrrrrrgh!", I reply to the screen, "UrrghArrrghUrrrrrrrrghArrrgh!"
Several minutes later I regain my composure to hear her sign off and leave the stage with the Gandhi-esque phrase “Together we can change the world...” as once more my world is drowned in tinny music. This time it’s Queen
Buddy you're a young man hard man
Shoutin' in the street gonna take on the world some day
You got blood on yo' face
You big disgrace
Wavin' your banner all over the place
We will we will rock you
We will we will rock you
After lunch, (in my case 2 cups of whisky, 3 ‘roll-ups’ and a determined ignoring of the drug cupboard) the video feed resumes and introduces (for some reason) the Labour candidate for mayor of Bristol, Mervyn Rees, who doesn’t say (or do) anything.
Unlike the Labour Candidate - can speak.
And then, appears the magnificently camp Rt Hon. Peter Main, current Lord Mayor of Bristol, who says how pleased he was that the Brandon Trust users put employment top of their list of concerns... Leading to this conference, (seemingly mainly focussing on bus passes...).
I may have lost consciousness at this point
For some reason my mind wanders to Chomsky... I think I may have lost consciousness at this point...
Sometime later, I come-to, and realise once again I’m drowning in an tsunami of Schlager. This time it’s Abba‘s “Money Money Money”.
reality is about to be torn
The panic rises, an unstoppable red-hot column of lava - I make a grab for the pills, then inexplicably, the sense that reality is about to be torn into jagged, bloody pieces, recedes.
It all suddenly makes sense.
Money, Money, Money, It must be funny, In a rich man’s world.
However the huge maturity, professionalism and realpolitik shown by her and the others in leading the campaign in defence of disabled peoples’ rights in the face of the government’s cuts, has led her right into the gaping maw of the Brandon Trust’s own particular brand of neo-Liberal nastiness.
drowned today in a sea of condescension and cheap music
The voices of the autistic and intellectually disabled people that the Brandon Trust and their “Official Ambassador” Kaliya Franklin, claim to represent, drowned today in a sea of condescension and cheap music.
“If you feed the poor it just encourages them to be lazy. See the Peterloo Massacre and the Irish Famine. History teaches us that lead is the best answer to whiny Guardianistas”.
