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Tuesday, 11 September 2012

Stolen Voices - Silent Lies

An Open Letter to Brandon Trust Ambassador, Kaliya Franklin.

Bennie and the Jets - Number 1 on TNR's Top 10 Transport Hit List 

Dear Kaliya,

I’m sorry if you found my report of the Brandon Trust’s second, “100 Voices" conference, published on The New Republic, a little brusque and unkind.

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


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.


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.


  1. I chose not to initially respond to this because the timing was inappropriate and also I felt the manner in which you made your criticsms was unfair and detracted from any genuine issues you were raising. However, here goes. I'm not sure I won't just be making things worse though..

    1. Silly voice. As you follow me online you'll know my voice has been a problem for almost a year now. The volume is just about returning if I'm careful, but I don't have control of tone etc. I'm sorry if you felt this was patronising, that was certainly not felt by the people in the room. And, like I say..I haven't got full control of tone, volume, nuance etc, if I'm lucky it might return, but equally it may not. Listening back to Woman's Hour which I did yesterday I felt my tone was inappropriate in all sorts of places...but basically it does what it, not I want still.


    1. The start of you reply is mendacious, self-serving and false. I don't have the wherewithal to deal with this kind of facile Neurotypical game-playing. I'll leave you to fight Our Battle in whatever way you and your Chums see fit.

      Fritz V

  2. 2. Music. I'm very aware of not infantalising people with learning disabilities - the people in the audience are adults just like anyone else, most of the audience were hugely hungover from the almighty piss up the night before. Unfortunately I had to go to bed and missed it all...but alot of people started drinking again at lunchtime (not the staff!)
    The music 'quiz' was simply a tool to liven people up after alot of talking. I did feel some of the presentations went on a bit too long, and much of the audience disengaged, but like last year, the music was the most popular part of my speech for the people in the room. Its really difficult to put together a speech and music that is suitable for an audience which ranges from people far more intelligent than you or I, to people who have profound and multiple LD's. Using cartoon or nursery rhyme music is the only way I've found to allow an audience with these vastly differing abilities who range from 18-65 to all instantly recognise the songs. Frankly if I could use the same music at every conference I speak at I would...its an effective tool to communicate with and fun, not something that's patronising. I use cartoon or children's music alot to listen to at home, as do other people I know, and I still watch cartoons. Actually, the one form of media I've found where disability is well included is in cartoons, far more so than any other music or tv shows. The sole complaint from a conference delegate was that this year I didn't include Bob The Builder in the music choices! I also deliberately went for a 'Madonna style' version of wheels on the bus to try and avoid overly childlike sounds. But then I used to go to alot of parties where the DJ would mash up things like the Muppets with Pink Floyd!
    I had things like Big Yellow Taxi in my original longlist, but when I went through many of the tracks I'd picked, the form of transport they were about wasn't clear enough, and despite trying to ensure that each track clearly stated 'bus', 'car', 'walking' etc probably around 50% of the audience found that too difficult, and too quick to keep up with. The whole audience enjoyed the music and sang along though. I'm surprsied you missed the Biycle Race track though...that was prominent along with these boots are made for walking, leaving on a jet plane and beautiful ballon. But, again the most popular track in the room was 'wheels on the bus'. I always ask the delegates what their opinions of the speech and music are afterwards...had anyone suggested to me that they felt patronised or unhappy I would have taken that on board and ensured a different style for next year..but perhaps what you couldn't see on the live stream was the audience reaction to the music..it was amazing!

  3. 3. The 'security guard'. His name is Billy, and he has moderate LD's. I'm not really sure what they are as as far as I can tell he's very intelligent, speaks two languages and I wouldn't dream of asking him unless he volunteered the information. I get on really well with Billy, he says I'm his adopted neice and he wanted to help me both this and last year with practical physical support as he is able bodied. Billy chose to come on stage with me, and honestly, its really nice to have someone with you on a stage who's there to support you, its a daunting environment on your own. This bit of your criticism upset me the most tbh, and I think for us all demonstrates the point I was trying to make about not judging on appearances. You can't tell by looking that Billy is disabled!

    4. Attitudes. The story I told was to illustrate that people aren't always what we think they might be. There were more examples of being badly treated on transport and I'm sorry you missed those. I do think that sometimes we as disabled people prejudge not yet disabled people, but I think that happens far more frequently the other way around as I included in my speech.

  4. 5. Its interesting you raise the 'black power' issue as I was discussing that on the day with one of the candidates for Bristol Mayor. Martin Luther King is a hero of mine, he spoke up for people in all minority groups, but was frequently criticised in the same way you are criticisng here for doing so. I'm not sure if you missed the focus of the speech on enabling people with learning disabilities to vote and having accessible information from politicians and parties so people can make their own choices? I wonder what you thought of that? Again, its not an overly popular thing to say, but I believe that everyone has the right to vote, or to choose not to vote and that it is scandalous people with LD's are so marginalised in politics.

    6. You're right, issues facing people with physical disabilities are not the same as those facing people with learning disabilities...but like all disabilities there are many crossovers and common ground. Charities usually use 'celebrities' as their ambassadors, I'm definitely no celebrity but I do think its a step in the right direction that a charity are actively seeking out someone with a disability to help raise awareness. I'll be happy when people with learning disabilities do that for themselves, but I also think we need far better links and support between people with different disabilities as this kind of divisiveness is something the government are preying on. To be really clear, I see my role at Brandon as being to support and raise awareness about the issues the people supported by Brandon raise. If it ever came to some sort of conflict between Brandon and service users its really simple...I'm on the side of the people they support not the side of a 'charity brand'. I don't know Fishermen's Friend but as I understand it one of the band members has an immediate family member with severe LD's and that's how they got involved.

    7. Training. Like all of us, I'm learning as I go...not just about learning disability, but everything we do. I'm aware there are huge gaps in my knowledge in many areas, there always will be as none of us can know everything. I'd really like to do an NAS course, its a great idea. I wonder if you noticed the incredibly eloquent self advocate with autism who was speaking during certain presentations? She's extremely impressive.

    I've probably missed all sorts of things out, but I'm tired and this has taken an hour already. If I'd been physically able to do so I would have responded sooner. Next time, perhaps you could email me and ask me to consider the issues you are raising? The problem with the approach you used is that its upsetting, comes across as a personal dig and stops people responding to the valid points you're making. It might well take me some time to reply, I'm juggling disability, lack of care, and activism just like everyone else, but you're much more likely to get an appropriate response that way. I hope this helps to clarify things for you, and I'm saddened that you only saw the negatives of the day. I think its a big first step on a really long road that Brandon run a conference for people with LD's, where people with LD's vote on the issues they want covered and set their own agenda. That's why there was such a strong focus on employment alongside the transport stuff..they are the top issues all the delegates wanted covered.

    Best wishes, Kaliya

  5. Response acknowledged. Reply eventually. Fritz V.