blogging

I'll be there for you.

2012-03-01T13:03:00.002Z

Loneliness is quite a difficult thing to describe to the uninitiated but much more common than you might otherwise think.

In my case it stems from the situation we live in and also more so from the fact that I’m quite difficult to get along with.

I don’t mean to be because I love people but I have these very exacting standards which I think are quite hard to accommodate.

I’m bullshit averse and would rather have no friends than many acquaintences who toe the “lets keep it superficially tidy” line. This means I have few friends.

All the ingredients of my life which should make for a breathtaking social whirl are negated by the fact that I am fighting an unwinnable war for kindness and compassion over popularity and cynicism.

I don’t make life easy for myself and I don’t make life easy for other people and this fact has plagued my address book my whole life.

I like it simple. I like to know where I stand. I leave other people in no doubt and this unfortunately is the problem. Truth is a currency that isn’t accepted everywhere. I’m not saying that I’m right in the things I’m asking for.

Maybe disabled people should be everyone’s justifiable target. Maybe removal of benefits or enforced free labour for disabled people on benefits indefinitely is the way to go.

Maybe killing new born babies because of disability which apparently burdens society and the families they are born into is the “new abortion”. Maybe jokes about Harvey Price wanting to “fuck” his own mother are hilarious.

Maybe retard or window licker or spazz or mong is the new idiot. Maybe even though it’s replacing an abusive word with another abusive word it is reclamation. Just a word right. Come on uptight people Chill the fuck out. They never do any harm at all words- that's why most people make silent rallying speeches promoting racism and homophobia and sexism though the medium of mime.

Maybe all disabled people are scroungers and fakers and therefore all government policy branding them as the same and backed up by tabloid propaganda is ok.

Maybe I’m a self serving patronising, publicity chasing, politically correct, free speech curbing attention seeking asshole.

I dunno. Maybe. Definitely not on Thursdays though that's my spa day.

I know I’m tired. I know I miss my mum and still can’t breathe normally when I think about how I wasn’t there when she died. I know that. I know that when I went to see her afterwards I collapsed by her bed and kept saying sorry over and over again.

I know that my girls face an uncertain future . I know that they statistically run the risk of being abused and more than likely become the victims of crime because of their disability. I know they have been bullied as children and will be again as adults.

I know that this government like every government will pay lip service to the needs of disabled people whilst systematically deconstructing the structure of the system which tenuously supports them now.

I know that Society becomes more perfection focussed with every passing day and what little ground has been reclaimed for diversity is being lost as we scramble to name and blame.

I know that. I know too that today I can’t stop crying because what I’m hoping for seems further away than it has ever been.

So today is one of the days a month where I let myself acknowledge the feeling of hopelessness that has stood beside me since disability entered my life.

That hopelessness taps on my shoulder, when people driven by an odd agenda attribute motives to what I do that bear no relationship to the facts.

It also that surfaces whenever we go out with Emily and run the gauntlet of comments and stares and jeers and verbal abuse or spend time with people who ‘don’t get it’ and make helpful suggestions with little interest and the hopelessness that settles around my heart when I switch on my TV and watch smug cunts make jokes to baying crowds.

Disablism for money isn’t a noble pursuit irrespective of the costume of free speech you use to disguise it.

Loneliness is a bitch but I’m not sure I mind it all that much anymore. It gives me more time to work on my money spinning misery memoir.

Cash after all is the sole reason for disability according to David heartless fuck trumpet Cameron and his cabinet cronies.

My children according to some are my nest egg. Who’d have thought it eh?

"Fun" in The Sun

2012-02-28T00:47:00.009Z

The Sun have played a blinder. The day after they launch their new Sunday paper they are accused of paying for information on an industrial scale and the following days frontpage predictably ignores the story everyone else is covering.

They splash with the story of a woman on disability benefits living her life, or as they prefer to represent it, cheating tax payers of their hard earned cash because she has, according to her, a fluctuating disability and is pictured on a rollercoaster.

The front page seems to have her beginning to explain what it means to have a fluctuating condition- which will be ignored as the paper plays to the gallery of hate baying for blame in these days of austerity. She’s been branded a liar and a cheat with the finest example of disability ignorance I’ve ever seen “She’s disabled? Well then how can she ride a roller coaster?”

My children are disabled. They ride roller coasters. They walk and talk and everything.

The dirty little cheats.

The scummy little benefits thieves I’m harbouring in my home, do many things without the aid of a wheelchair or cane or leg braces. They are prevented from doing many more because of their hidden disability, they are prevented not just by their condition but by the fact that society has always been uncomfortable with difference. Now it’s being actively whipped up to spout hatred.

As the Sun brings us smiling semi naked women on page three, displayed for the sweaty and sad to dibble over, it is, it assures us, more than equipped to preach chapter & verse on majority morality.

It is hell-bent on exposing the liars and thieves who live and breathe and lie and thieve their way to luxury mansions and cars.

Who needs facts when you are the gang leader? Who needs truth that fraud accounts for a tiny percentage of money lost by the DWP. The bullying Sun has a story to spin and and policy to bring.

Welfare won’t reform itself and if the majority ground isn’t well prepared then too many people will oppose the Bill. You only have to see the way the Health and Social Care Bill is taking a beating to know that. People love the NHS they are vocal in their concern and distrust and their voices are being added to everyday by Doctors and Nurses, Midwives and Health Visitors.

Dear God if The Welfare reform Bill received the same kind of community questioning the whole thing may just fail. If people actually knew what is being planned for disabled people, which could be any of us at anytime, what then?

Everyone apparently “knows” a benefit cheat. Really? Do they? Or have they simply read about them in the filthy rags, which peddle the myth of disability cheat as the norm- not the exception. The propaganda myth is being deployed so effectively, so thoroughly that people are not stopping to question any of the rhetoric being peddled. The Sun is the champion of the “report a benefit cheat” hotline. The urban myth of the disability scrounger, liar and cheat is the most shameful propaganda peddled since Nazi Germany rose to power. This is bullying on a massive unprecedented scale and yet another day brings another headline.

But something truly frightening has evolved from all this nonsense. People have become so brainwashed so desensitized by the same tales churned and rechurned as news that they have stopped looking for people faking it.

A threshold has been reached and surpassed but people seem to have developed a taste for hatred and the scapegoats are “perfect” for bullies.

Because so many have a vulnerability, a fragility present since birth or acquired in life this doesn’t give anyone the right to vent their anger at the actions of bankers on Wall Street. A global financial meltdown has caused a trickledown of blame, which shamefully has caused disabled people to become the “perfect” target for the predators we are all becoming. Seemingly without even a pause, fingers are being pointed.

Sickening though it is genuinely disabled people are being routinely targeted by people on the streets with verbal and physical abuse. According to Scope this has risen by 75% in the last year.

So if you see this story and you will, thanks to the 24 hour news cycle, don’t be quick to applaud the outing of a liar. This woman has been given no anonymity millions of photos of her will be appearing everywhere tomorrow. She has no defence; she has been selected and targeted and the gangs of bullies who hate her and millions like her, will cheer.

When you see her photo remember that her life has been altered and ruined, altered by disability and ruined, by propaganda. Unlike the pampered luxury that many of our tabloid editors inhabit, disability isn’t a lifestyle choice. Disability chooses you not the other way around.

A ride on a rollercoaster isn’t a crime. When did that become the way we interact? Why is she being treated like a criminal? We don’t have access to her medical records we don’t know the truth. We are being encouraged to arm ourselves with pitchforks and flaming torches and denounce someone we don’t know by The Sun.

(Here is the audioboo of this blog http://audioboo.fm/boos/688130-fun-in-the-sun )

Clare, Patrick and Jess.

2012-02-24T08:44:00.002Z

I started submitting pieces for the Guardian nerly two years ago, on the issue which means the most to me and to many millions in this country, the mainly unreported issue of disability.

Jessica Reed commissioned me at Comment is Free an amazing lovely woman. She’s also a calm objective gate keeper to cif calmly explaining why pitches are not suitable to petulant pitchers like myself and also has the vision to see when they are.

At the time Society were also running Joe Public strand a place where issues like the ones I campaign on which might not have a distinct news connection could be placed.

This was when I met Patrick Butler who put me on to Clare Horton.

Patrick has seen the importance of covering issues around disability for a long time he particularly understood that at an unprecedented time of austerity the fact that disabled people were at the frontline of cuts was an issue very worthy of covering.

Clare Horton is a fantastic dedicated editor. She believed in the interview series and she commissioned it. I first took it to her is september last year and we've worked hard to get it out. Accessibility was a primary concern for me and she took this as far as she could.

It's not perfect we know that. Some decisions however don't rest with us on this topic

She has worked tirelessly to ensure that it is is as accessible as possible. She has personally transcribed the series this week when she discovered a miscommunication had occurred.

Without people like Jess and Patrick and Clare much of the disability coverage of #wrb and issues around disenfranchising generally would remain ignored by the majority of the media. I firmly believe that without the Guardian leading on this we would never have seen coverage in the Mail online whose readership need to be told the truth like everyone else.

They don’t patronise they just allow the stories to be told. This is integrity journalism. Journalism as it’s supposed to be.

It’s quite easy to throw stones criticism is now a default setting for so many but it’s very important to say thank you and to give credit where it’s due.

So thank you, you're fucking brilliant people .

Mirror, mirror.

2012-02-19T19:45:00.003Z

So getting older is a bit of a bitch. This we know but I’m thinking that for all the aches and moans and clicking knees and wrinkles and changing eyesight and cruel twist of gravity and slowing of reactions and memory lapses, it’s better than the alternative.

The thing that’s on my mind a lot as my older daughter approaches her 18^th birthday is where my generation fits in to the age spectrum.

It's as though there is a swathe through western society of women between 30 and 50 who aspire to 25 and have the money to achieve this. Looking good does seem to have a clear path to feeling good for so many

We have old women and young women and girls trying to look older and women trying to look younger and I’m wondering that as we fill our foreheads with Botox and our wrinkles with a collagen, our breasts with silicone and our hair with tint are we somehow stemming the flow of natural ageing in some way?

Of course women have now attained the right to do as we wish dependent on where you live but does that come as a result of our own needs or the urging of a society which alters when it alteration finds?

To be flat chested or wrinkled or greying or even to have thinner lips than a twenty year old seems to be a primary concern, whilst truly diverse people become even more marginalized and targeted by hatred on our streets.

So I struggle to marry this with the notion that you can now have collagen injected into the back of your hands to diminish the visible sign of cartilage, which denotes ageing. This takes trivial to a new level in my opinion.

To be a woman who tangibly ages it seems is tantamount to self proclaimed failure. When did denying your age visually become tantamount to an expression of emancipation?

I tint my hair so I’m not denying that I fall into the category of vain, I’m just wondering if we somehow have devalued ourselves to such a degree that we now only exist if we do so from the vantage point of attempting at least a nod towards physical perfection.

I think if what you need you can find supplied with a procedure or an appointment then all power to you, I’m just raising the idle question of why.

When did feeling better about you become the standard for so many women? In doing so do I’m not suggesting that they are sublimating the intellectual for the physical but it’s interesting to me that so many women feel driven to find the fountain of youth and have it injected into their bodies.

This also does not diminish the horrific stories of the for-profit Pip implants which have filled the headlines. These women trusted that they would be cared for and they weren’t. They were utterly devalued and let down.

I’m just wondering what is the next step on our journey into an image obsessed age.

I also wonder how far it takes us from those of our fellow humans who cannot match this highly prescriptive model.

My Mum was very youthful. She dyed her hair for a while but then let the grey show through and until she died last December two weeks shy of her 78th birthday she had hardly any.

I think of her a lot especially as Lizzy approaches adulthood. Not only her external beauty but the loveliness of her character which is although trite and often said is the best aspiration eh?

Mum at 60 holding Lizzy.

Love is all you need.

2012-02-13T10:35:00.001Z

Enforced love and the celebration of it has made Valentines Day a bit of a reality tv star these days. Famous and known to all but the reasons for it are unclear.

The origins of St Valentine seem to suggest a group rather than an individual is responsible for the naming of the day and like many traditions the genesis of this tradition lies in the Church.

Chaucer too seems to mark it out as worthy of observing and I prefer the notion of a writer claiming our tradition.

Valentines day when I was younger (single) seemed like one long love fest of nauseating competition.

I’m sure like bed post notches it was simply bollocks bragged by people too young to fully understand their own ludicrousness but it remains and prospers still on the notion of coupledom as King. Whilst those whose lives remain happilly or unhappily single, simply ignore it or get through it.

If Valentines day is Christmas then the hearts and flowers and champagne and chocolates are the equivalent of the fantasy land John Lewis ad. Anyone with experience of children will tell you that the idea of giving rather than receiving presents is one which features further down the list of our young than voluntarily cleaning their bedrooms.

Anyway if we’re going to choose a writers endorsement of a named day to spread love can we not have a more modern character. How about a Malcom Tucker Day? We could send anonymous expletive fuelled messages to one another?

Mind you if that was the case we could simply call it Twitter day.

Or and stay with me here, we could actually be a little more loving to one another all the time.

I love, love- me. I tell everyone who means something to me that they do all the time. It doesn’t diminish love as a concept or as a bond stronger than titanium to spread the notion of lives improved by others. Love survives all separation. Even death.

As we rush and fuss through life with a weather eye on the attainments of others in case they outstrip and shadow our own, we forget that connections with others are our greatest joy.

Telling people that their life is of value because of the contribution they make in enhancing yours is crucial especially now with hate on the rise.

Anyway that’s my suggestion. Give it a go. You’ll be amazed.

What have we become?

2012-02-06T11:04:00.002Z

Remember compassion? We used to have that in the good old days. Maybe like white christmasses it is a construct of memory that didn’t really happen but neither did "jokes" like this one. I remember the good old days when Satire was reserved for politicians. Whilst Frankie does Cameron's bullyboy dirty work I fail to see his point.

As reality bites down hard with the first wave of cuts the scapegoat of choice is unbelievable to me.

Disabled people.

Mocking the potentially (and in some cases actually) vulnerable -the go to guy for school yard foulness has in a breathless display of entitlement and elitism not seen since the T4 euthanasia programme taken centre stage again.

The results, which I and many others like me have long predicted are bearing fruit. Disabled people are routinely being attacked on our streets.

Disabled people. Not bankers, not racists, not homophobes, not extreme fundamentalist Christians hissing and spitting their purile venom, but disabled people.

Their crime, scream the abusers, is simple. They claim benefits. Justifiable, life enhancing, socially inclusive benefits which enable them to live and work and contribute. That is one Tax Payers Alliance I can get on board with.

Yet when so many cuts are being rolled out, the one cut we all need to see apart from banker bonuses, is disablist propaganda which screams from the rooftops that people like my children should remain imprisoned by their condition.

"The world" say the rhetoric fuelled politicians "does not owe them a living".

Of course it fucking does. We are not all born equal. Those of us not currently disabled owe a huge debt of compassion and support and solidarity to those of our fellow human beings who need us.

"Genuinely disabled people", claim the politicians "will be protected". This is the biggest lie they have yet peddled. No one is safe- not from the whispering campaigns,the right wing media, nor the jack booted private companies tramping across the welfare system.

There really is profit from misery and those of us not currently disabled are paying with our moral core as we watch the coalition playing Russian roulette with disabled peoples lives.

Don’t believe the hype. From the jokes on our TV screens to the votes in our House of Commons if we believe or repeated this myth we are all of us responsible.
Don't believe the hype.

Everyone is sleeping

2012-02-01T00:24:00.001Z

Finally get Emmy into bed at a relatively early time and all I can think about is mum.

It's that throat grabbing feeling which I suppose is just another part of my brain accepting that she's gone but it means I can't sleep and all I can do is cry.

Do we all love our mums this much? Presumably even the cruel ones the selfish and unkind ones must still spark in us this feeling of being utterly terrified when they die. Possibly not.

Maybe for some people there is relief or even a type of happiness when the irretrievable end of a dysfunctional relationship is reached. Possibly though that only brings a different grief one of resentment and recrimination?

I don't know. I was so lucky that I will never know how it must feel to lose a mother you loathe.

My mum was all that was kind and gentle.

I hope that she knew that even at the end. I hope that she could tell I was there she rallied each time I arrived and declined each time I left. That may be ego that presumes the connection but I see it as her being a good mum.

Fighting until the end to protect.

I'm blogging this because I don't what to do. I don't know how to express it in this silent house of sleeping people other than to type it until it goes away. Or at least dissolves a little.

One day at a time is right.

How low will they go?

2012-01-20T13:57:00.005Z

Last week I asked a celebrity Rufus Hound to rethink a RT posting with the word "Retards" in it. I also addressed it to the sender of the picture. @Jayparsonsmagic

The next morning the abuse from the sender and another fan began.I engaged with them even though they called me a "spastic" and made further comments etc etc then later in the day Jay Parsons tweeted a pic with a Downs Syndrome child and the tagline "I can count to potato".

So I phoned Rufus Hounds agent to warn him that the sender of the picture was tweeting another cruel image referencing disability.

Rufus Hound got in touch on twitter and he wasn’t pleased. We exchanged tweets then he blocked me.He carried on tweeting me and about me but as I wasn’t able to reply the debate had been effectively censored by him as he related only his point of view.

His many fans swooped on me as is the predictable response.

Celebrity’s tweeted their sympathy for his situation and their fans saw that point of view too. Rufus Hound really was being victimized from this perspective. Many of them know and like him in real life they only read his side of the situation so rightly they were defending him being attacked as they saw it. They just didn't see my tweets.I sent him replies and a couple of links that was all.

I didn't bombard his timeline at all.

I blogged my reasons for the situation and included the two images that I was talking about

Jay Parsons sent this message to Rufus Hound

@RufusHound if u follow me, I can direct message u an idea I've had

I'm working on the principle that Rufus Hound had the sense to ignore him

as a couple of hours later an account called @TimTimmy63 was set up and a couple of hours later I got this message referencing my blog -

@TimTimmy63 I can't believe that bastard sent that for all to see.I won't quote his name so he won't be warned that I've tracked him down

I had no idea what this mean so I ignored it. Then I got this-

@TimTimmy63 I'm sure that's him.There can't be that many magicians in Bournemouth.I'll wait till he comes to our table & get confirmation

@mrsnickyclark Sorry you've lost me.

@TimTimmy63 don't worry we didn't mention the blog specifically... Mum's the word

At this point I thought this guy might be a genuine account threatening violence but I wasn’t sure and could hardly phone the police about it so I replied then blocked him -

@mrsnickyclark I don't know what you are suggesting or what you hope to achieve but this is an intellectual argument over language. Nothing else

He kept replying-

@TimTimmy63 If you can justify your actions, you don't need to regret them... Not till the hangover anyway

The following day this strange exchange between "victim" and "assailant" appeared. If I'd been beaten up or punched or whatever was supposed to have occured- tweeting the person who had done this wouldn't be my response, but we're all different.

@TimTimmy63 I think things got too far last night. I may have overreacted, but something struck a nerve

@JayParsonsMagic Interesting night last night, sorry to be vague but can't go into details

@TimTimmy63 why can't you go into details?

@JayParsonsmagic it's a police matter now... And don't think I haven't just seen your last tweets. Might have known "she" was involved

@TimTimmy63 If you delete tweets would they no longer be readable? Or admissible in court?

@JayParsonsMagic you really are new to twitter aren't you? You can delete, but i have kept screen prints

Jay Parsons to @LeoPearson be careful, it would seem NC's minions are reacting to her blog... Had a lesson in what real hate is last night

Then a couple of days later Jay Parsons posted this video of his cat to Ricky Gervais. The cat has the same markings at @TimTimmy63 ’s avatar.

@jayparsonsmagic here's our cat playing fetch youtube.com/watch?v=wJuaME… Now just need to teach him to fetch my slippers and attack the postman

The effort that has gone into this presumed charade is quite staggering. The claim that I have incited a crime is vile and the comparison to genuine hate crime, which often results in the murder of learning disabled people is frankly disgusting. Of course I may be completely wrong-victim and assailant may have cats with identical markings and that would indeed be a coincindence of the cruelest irony.

Surely a calm debate on the issues around dehumanizing language would have saved everyone’s time. Because this type of behaviour detailed above is really not what I imagine free speech was created for. It's not what people fought and died to protect and it's not at all what I campaign for.

No one is accusing Rufus Hound of committing a hate crime by using the word retards or for RT'ing an image with the word retards in it.
In and of itself it is of course just a word but it is the normalising of words like this which reference disability promoted by big stars, that is the issue.
Bigots don't trouble themselves to look for intent.

These words aren't being reclaimed to promote a positive idea like other hateful words were reclaimed to do.

They are being reclaimed as insults.

They are furthering stereotypes from language which has historically been used to mean learning disability and the joke is always using the perceived low intellectual capacity, as a reference for stupid or foolish acts.

I was going to leave this alone and not blog it because I found the whole thing really sad to be honest, but again people have been tweeting Rufus Hound with yet another piece talking about free speech and "offence" equating it to what happened and he's been RT'ing to bolster his original defence, so I felt it fair to tell the tale of the "hate crime " as it also shows the sort of abuse I take on a daily basis.

I campaign through choice yes but also because I've actually seen hate crime against someone I loved very much and who died a month ago. My mum.

All hate crime begins with verbal abuse

A little kindness.

2012-01-14T14:35:00.004Z

"The 90's you didn't need to tell kids not to try this shit at home. They weren't all complete retards back then"

Comedy it’s a very subjective thing. Not objective at all. We all have sensibilities lets face it and we all will feel hurt at one joke and laugh uproariously at one which may hurt another.

But humour and objectivity isn’t what I campaign against, it’s humour which objectifies people that’s what I’m not keen on.

There’s a lot of talk on Twitter and beyond about comedy. As I’ve said before it is a life saver. That can’t be over stated. It can lift your mood and free your mind if used well.

It can tackle and address taboos too, beautifully and in the case of someone like Richard Pryor permanently when it comes to stigmatising attitudes.

But the comedy of cruelty extends beyond personal subjectivity. It’s a simply a call for people not to promote stereotypes by peddling the myth of laughable clichés.

When you use words like "Retard (or retards), or spastic or mong or window licker" as a negative term to mean stupid or foolish you perpetuate the myth of learning disability being less than. Less than human less than dignified less than a person.

Stigmatising attitudes towards disability as a negative permeate the language we speak. This is a historical fact and all I’m asking is for people not to use terminology which replaces the epithet for stupid or foolish or idiotic with one that references disability. As comedian Richard Herring says"if you mean idiot why not just say idiot"

I do politely challenge on twitter when a celebrity with a huge fan base can influence many people. Retard as an abusive term, may not hurt you or anyone you love but the facts are it does hurt many people when used about them or in front of them as a casual link to stupidity. It’s with the hope that once knowing this, once understanding this people will choose not to perpetuate harm. Which for many many disabled people is a reality.

Despite lots of infuriated assertions from champions of free speech and free comedy, I don’t witchhunt. I love to learn, to realise and understand the human condition of the people I share the planet with and if I ever unknowingly say something hurtful I choose to apologise and change.

That’s how you define intention to my mind. Not by what you say but in how you react to criticism of saying it.. That’s where the truth lies. If you turn the tables and take the "How very dare you" route it’s a shame really.

If you become defensive and go on the attack you haven’t really the type of mindset, which is capable of growth through education. If you portray yourself as the victim as white male, wealthy and unencumbered with the worries many disabled people face in our patriarchal society. You look rather foolish.

If you attack polite reasoning with accusations of humorless PC gone mad abuse and block someone who is replying to you by referring to them as a “stupid bastard and a “fucktard” (combination of fucker and retard) then sadly you have nothing on show but your ego.

It’s a subjective thing comedy I agree. But my feelings currently remain that those who have a lot to gain from comedy ie salaries and TV exposure and offers of further work are sometimes the last people who should dream of lecturing the rest of us on what we find hurtful.

Because we know a little more about our own experiences on that subject.

Twitter can at times be great it can at times be not so great. We can all make mistakes and we can all apologise for them. Whether we do or not is of course up to us.

Apologies should be given not taken eh?

But the final word on the whole sad day belongs to the Tweeter Jay Parsons who thinks this type of humour is fine and that the rest of us need to get a sense of humour. He tweeted the above image to one of the lovely fans of a celebrity who felt he should educate me about comedy and my PC nonsense.

Jay Parsons also wrote this, which he's no doubt now deleted to someone who with his brother, had delighted in calling me a "spastic" and other choice "joke" words.

@JayParsonsMagic: @LeoPearson it was a crazy day that got well out of hand... Loads more followers though

The Rules Of Troll Club

2012-01-13T20:28:00.001Z

1st of Troll club. Incognito is key. Never ever recognise yourself as a Troll.This is vital for success.

2nd rule of Troll club.Ensure you maintain 100%hypocrisy at all times eg- “How dare you curb my right to free speech by exercising free speech in doing so”

3rd rule of Troll club. Leave your self awareness at the door. Eg- I'll agree droolingly with my star, get a RT, delight in my increased followers, then attack critics as self publicists.

4th rule of Troll club.Shock and Awe with added victimisation. Eg-I will introduce myself to you by way of attack then be a very hurt puppy when you reply in kind

5th rule of troll club.Constant brevity.Only ask short offensive and most important rhetorical questions eg "are you fucking stupid?" "Why don't you fuck off?" "Who do you think you are?"

6th rule of Troll club.Confuse with sweeping generalizations ensuring that you also compare AND inform.eg- "Why are you making such a fuss about CRAP there are people DYING in the world"

7th rule of troll Club. Fire at Will-Balanced thinking is for wimps and Guardian readers.Remember these punches are going below the line I mean belt-"I don't understand the issue or nuance of the debate but I LOVE my celeb so will call you a cunt"

8th rule of Troll club. Experts are pointless.You are the voice that counts rage fuel ranting wins the day.Excel at the Ostrich Maneuver. Stick beak in very firmly, and without real interest whilst waving opinions around on arse

9th Rule of Troll Club. Anonymity. Settle on a suitably jaunty profile pic don't include your real name and then be as spiteful as possible. Abuse, abuse, abuse. Remember you’re trying to make someone cry.

10th Rule of Troll club. Exit strategy.Ok eventually you’ll have to concede because lets face it you’re a fuckwit. However you can still score as you lose the debate in the face of calm and reason.This is your coup de grace. The arsenic laced icing on your cake of hate.The final insult. eg Well this is pointless you are neither intelligent nor able to frame a coherent argument. This is a waste of my time (cunt/bitch/twat/wanker optional)

Good luck trolls you must fight the good fight against truth and reason against fairness and namby pamby, tickle the tummy lefty bullshit. We need you reactionary, we need you abusive, we need you angry and ranting incomprehensibly against the tyranny of rationale.

Because without disproportionate unwarranted hate and spite and venom and pain we will be consumed, by the armies of kindness and common sense which threatens our very existence.

You’re fighting for the right to free speech of those we determine are right to speak- NOT the other tossers.

Remember our motto hate, hurt, then move on.

Please note-Celebrities discuss at length their distress at the abuse they take on a daily basis and in many, many cases thats true, but don't worry there are also those celebrities out there who feature amongst our ranks. They demonstrate all of the rules quoted above sometimes in a single 24 hour cycle on Twitter. They have the added advantage to us of being able to mobilise their flying monkeys to do their trolling bidding as they register faint hurt and mild distress. Then they pour all the *hurt* they have endured into their blogs.
Cherish these celebs for they are the greatest Troll of them all.

Then they came for me

2012-01-12T09:15:00.001Z

The propaganda at play currently across much of the mainstream media is both troubling and familiar. As the Government swoop to change the welfare system they are ignoring a report written and compiled and distributed by disabled people their carers and friends. This report contains facts but no one it seems is listening.

The BBC our very own public broadcaster who I love with a passion, bordering on blinkered worship, was quick to screen two recent documentaries on awful tales of benefit scroungers- now appears less keen to cover in depth a report entitled responsible reform which lays out the facts and the impacts behind the Welfare Reform Bill.

The most salient point being that fraudulent claims for benefits stand at less than 0.5%.

The assurances we hear at every turn about millionaire claimants and scroungers and liars and propagated by the right wing press are little more than a convenient lie.

However this isn’t the first time that disabled people have been subject to dehumanising disenfranchisement.

It’s been done before and as with many things that the government seem less than keen on it stemmed from Europe.

In July 1933 The Law for the Prevention of Offspring with Hereditary Diseases brought in forced sterilizations.

It had been voluntary prior to this but with the dawn on the Nazi controlled day the furtherance of the Aryan dream became a step closer to reality. Doctors began to register any genetic conditions and people were identified and lawfully sterilized against their will. Appeals were mounted but usually denied.

Then a Nazi couple with a mentally disabled son wrote to Hitler and sought permission for their “defective” child to be killed. The purity of the blood, to them so shamefully manifested in their child dovetailed perfectly into a warped Darwinist theory of perfection, that this request was granted.
It also set a precedent.

By August 1939 all newborn babies demonstrating disability had to be reported by medical staff to a panel. This panel drew their conclusions without meeting the children and marked their reports with either a minus of a plus symbol. A plus meant death. This then was extended to children up to the age of three.

The children were removed to clinics or hospitals and administered poison. It was more difficult to persuade the parents of children living at home so the parents were told that the children were going to receive treatment and help.

After they were murdered the parents were told the children had died from natural causes.

The plan expanded exponentially and encompassed Adults too. Deemed untermenschen (sub human) on the basis of their disability they were removed to the hospital at Hadamar stripped, stamped with a number, photographed and told to take a shower.
10,000 disabled adults were murdered in this way. Over 200,000 disabled people during the course of Nazi rule, 5000 of whom were children.

The propaganda used is the point I’m making. The Nazi’s spread a simple notion through the German minds as easily as jam on bread. They argued simply that disabled people cost too much. That they took bread from the mouths of decent people and that paying to care for them cost wounded soldiers vital treatment and houses for hardworking men and women.

The 1930’s equivalent of the squeezed middle in alarm clock Germany?

Possibly not but with every day that passes with every headline that screams scrounger I’m becoming more and more concerned. I think the historical imperative bears closer scrutiny because thoughtlessly peddling the myth of the benefit fraud as a majority, rather than the inconvenient truth of the minority makes propagandists of us all. Lest we forget.

United we stand against disabling practices.

2012-01-09T10:28:00.004Z

I was recently contacted by Sue Marsh passionate campaigner blogger and all round disability activist to support her joint initiative with Kaliya Franklin to bust a few myths around the so called benefit "reform".

Despite their disability these two women have put together a team comprising disabled people friends and carers whose sole aim is to stand up to money saving reform which targets the most vulnerable people in society.

As a carer I was proud to contribute to the fund they have set up to finance their report and as a mother of two disabled children I wholeheartedly thank them for what they are doing not just for themselves but for everyone who receives benefits enabling them to live.

Special thanks goes to the amazing Sarah Campbell who wrote the majority of the report.

They're not scroungers they're what the politicians refer to as genuine claimants yet Sue Marsh has recently been refused DLA. if it can happen to her it can happen to anyone.

As she details in her blog:

"We did everything possible to engage with politicians, lobbying MPs and Peers, writing articles, attending conferences, but at every turn we were brushed aside.

Despite serious concerns from campaigners, charities and disabled people themselves, the Government's the recent Impact Assessment (October 2011) into the proposed reform of Disability Living Allowance is almost identical to the original. Nothing has changed, almost none of our concerns have been addressed and as the House of Lords return to vote on the final stages of the welfare reform bill, we felt that it was vital we presented our own evidence.

This is the Spartacus Report. We all own it, we all created it. It is yours, use it in any way you wish. Please join in the campaign online today if you aren't already signed up:"

Please join me in supporting them in anyway you can. Without disabled people and carers fighting as we do the future is bleak and uncertain for all of us.

Below via Scope is that report.

http://www.scope.org.uk/sites/default/files/Responsible%20Reform.pdf

Floating boats

2011-12-31T16:26:00.005Z

Mum died on the 5^th December 2011. Just under a month ago and so on the last day of the last month of the last year that she was alive I wanted to dispel two myths.

The first is the most painful. Contrary to popular belief when your mum dies after having lived through Alzheimer’s for a decade. It’s not actually a relief.

It’s called the long goodbye for a reason. Alzheimer’s disease takes someone you love from you in the neurological equivalent of death by paper cuts. The changes are tiny at first but they are permanent and as they grow in number they cause an irreparable haemorrhaging of personality. They leave you yet remain behind so that the person you are confronted with doesn’t know you, doesn’t love you and cannot connect.

That’s them. You on the other hand remain the same. In my case the bond with my Mum which was forged in years of violence and anger and pain was stronger than ever. It wasn’t our violence and anger but it was our shared pain.

Her life I detailed in my Eulogy which I blogged, but it is the relationship of love which I’m talking about now because that didn’t leave me as it left her. As the plaques formed in her brain taking her into the darkness it made me understand what faith means whilst ironically making me realise unequivocally that there was for me, no God. To love with no hope of return, with no reciprocal word or gesture, with no recognition or reward is to me the only faith that counts

Lovely people emailing me after she had the stroke 9 days before she died asked if as an atheist I would mind if they prayed for me. This was a touching offer, which said so much about their kindness. They knew I was suffering and they wanted to help. Kind people like this I have all the time in the world for.

Conversely I discovered people who have found my blog, which often details the tough days for Emily, praying that she be “cured” of her autism. This is a little much for me.

Not because it will make any kind of difference these prayer groups could quite frankly get up and do the Tellytubbies Boom Boom dance for all the good it will do but my point is this-

If you believe yourself to be religious and in your view God has “made” Emily autistic then what kind of faith is it that now says “actually that’s great but can you make her with a little less disability? Thanks that’s great.”

Isn’t that treating their God like some kind of ecclesiastical chef with high maintenance patrons In any case it really makes no difference to me.

The second myth is that religious belief at a time of bereavement brings comfort. My experiences in the last 3 weeks have brought me many, many assurances of Mums place in heaven. More worryingly that she is looking down on me and watching over me. These assurances have always been unbidden. They are as kindly meant as the prayers but it serves no useful purpose other than to make me feel acutely aware of just how very dead she is. Plus Mum wasn’t one to listen in to other people’s conversations.

No promise of my mum through cosmic sheets of glass or invisibly tiptoeing through my house brings me anything positive at all. In fact it is through my deep lack of belief that much more comfort has come because I’m not wasting time wondering about whether she’s playing bridge with Princess Diana I’m thinking instead about the time we had.

I just miss her; at times so much it stops me in my tracks. I loved her so much you see and now she’s gone. Please understand I’m not making a judgement on the belief of the others, do what feels right for you, float the boat you need to I’m not attempting to torpedo yours from mine. I’m just taking a little time to make mention of the other way to cope with death.

One that makes no promise of celestial reconciliation but a simple assurance that the love you feel remains the same. Oh and by the way if you know me don't tell me what a relief it must be because it really truly isn't.

Irrespective of the intention behind these words believe me when I say Alzeheimer's isn't a sedative against grief.

Calm down dears

2011-12-27T09:51:00.003Z

I was at a party the other day and a man I’d never met before strolled over and without a word of introduction said “the problem with people like you is typical PC gone mad shut up you Cunt” I wasn’t sure whether to phone the police or punch him in the face but I replied “I’m simply trying to make the point” he replied “You have no right to try and curb my freedom of speech you stupid bitch” I replied “fuck off” he replied “how dare you verbally abuse me don’t you work for the Guardian. Typical leftie” Of course I wasn’t at a party (hermit me) I was on Twitter.

Fast encroaching on Facebook’s turf for social media champ this new wave of anti-social networking seems to be the norm.

Without a thought for politeness or courtesy the sheer accessibility of twitter means that if you don’t like something from an opinion to a TV show you can take your rage to the object of your approbation at the speed of light.

From Amy Winehouse’s death to Princess Beatrice’s hat from hack-gate to Gervais-gate, the issues of the day are dissected and fulminated against with all the accompanying venom which anonymity provides.

But at what cost? There are of course trolls and haters ironic accounts and comedy constructs but there are also many ordinary people who brought us the truth and the light. None of these people is immune to the Tweet rage, which stalks this medium.

I over reacted myself, to an interview with Tim Minchin. It was at the height of the aforementioned Gervais-gate and all stand ups were being asked about the issue. He suggested that I should have just called him up. Clearly in (terrifyingly apparent and almost instant) retrospect he meant that the media storm, which followed the situation, was feeding the flames of the raging moral majority, who neither knew about nor cared about the actual issue at hand. But in my heightened state one of my favourite people had just said I’d made a huge fuss about nothing. Here I had, the thing I complain about the most, a complete and total nuance fail.

Long story short I blogged my irritation and sent it to him. We entered into a tweet exchange and Robin Ince’s usual, rational wisdom calmed my hurt feelings which led me to immediately deleting my cross blog. In my defence it had been a long month of being called a cunt and I was a little battle weary.

Mostly and very genuinely, I’m really sorry Tim, I think you're amazing.

Anyway…The point I’m making is this. Please calm down. The ‘Minchin moment’ aside I’ve found that calm in the face of incandescent rage really is the key. For weeks prior to my own tantrum I’d calmly explained my campaigning and the reasons behind it. My standpoint on language and the way it makes people feel, to be targeted for something over which they have no control.

I rarely tell the perpetrator to fuck off opting instead for calm discussion sometimes many many times. However latterly I’m following the experts and in my case the police’s advice of ignore and block. (When the tweeting led to blogging and threats it was time)

Twitter as I’ve said before is a great thing. It’s a lifeline and at times a warm embrace when the world can seem unremittingly awful. We are threatened with shut downs over riots and we are free to express our views and opinions leading to a real meaningful change, in a way unprecedented in our times.

Again, we have this right, with it should come a hefty self-censuring responsibility, but it’s not always the case. We can’t control the hateful and hate fuelled cruelty of others but we can definitely control the way that we respond. If we don’t feed the trolls they truly will go away.

Propagate this

2011-12-20T09:50:00.003Z

Propaganda according to my dictionary is the organized promotion of information to assist or damage the cause of a government or movement.

Propaganda can take many forms; in can come in the dry academic pamphlet form in the dull political yawn fest speech form, or in the form of Art.

Art the escape hatch for the intellectual.

Whether in music, theatre, opera, ballet or brushstroke on canvas, Art sets us free we are told. There is however a new pretender to the artistic throne- he doesn’t wear a hat with bells but the fool it seems is now king.

Comedy has joined the echelons of the stellar line up, and has moved beyond the Bernard Manningesque minority hating working men’s club routines. Comedy as Art means that it is no longer subject to approbation and criticism, is no longer open to argument and restraining pleas. Art is sacrosanct.

If I wanted to peddle propaganda I’d do so in an environment, which reached a wide audience and came with all the ‘rules’ weighted heavily in my favour.

In short if you want to put your propaganda where your mouth is, comedy is the place.

The Tory party is comprised of patient men. I’d like to say men and women but we know this isn’t really true. The higher the climb of the political ladder the further the clock turns backwards. I’m fairly willing to hazard a guess that at the very top of the Tory party the women in those fevered minds are all wearing crinolines and fainting at the sight of a naked male ankle.

As they have patiently waited in opposition they have been calculating the cost of everything and naturally the value of nothing. The welfare state and in particular the benefit bill is costing billions so naturally it’s the first to go.

But you can’t just slap on the jackboots and start liquidizing the Job centers no no no. These things need time to finesse to marinade and to ferment.

The same brains which turned a grocers daughter from a nerdy scientist, light on the social skills and heavy on the ambition into The Iron Lady- admired on the world stage. Her policies killed communities and decimated the very industries which took us from the corner of Europe to the centre of the political stage and the fact that the Tory smoke and mirrors enabled this breathtaking audacity demonstrates that they are very well versed in the notion of ‘softly softly catchy monkey’.

They Tory propagandist machine thrives as a well-oiled, immensely well funded, well practiced death squad. They kill and maim good intention and natural dissent with a ruthless accuracy marinated in the aforementioned patience.

When they set their sights on a target you can bet their aim is true. They set their collective clocks ticking on the welfare state and they began the countdown to power.

But arbitrary cuts don’t work if the people aren’t prepared which is where comedy comes in.

Since David Baddiel and Rob Newman demonstrated the power of the stadium tour comedy has risen from its lowly corner of the artistic room. It's not the fill in it once was. Nor is it performed by misogynists and racists in smoke filled clubs. The comedians we all know and love are mainly highly educated, politically savvy humour mongers of the finest caliber.

It may be purely coincidental that as comedy approached it’s untouchable status in terms of art the material swung away from politically correct and rather more to the “smack a cripple” variety. It may also be a coincidence that the baddest bad boy of them all plays to sell out crowds and likes to get a bit “rapey” in his acid verbal condemnation of fantastic, ethical, left wing stand ups like Josie Long.

It may also be a coincidence that Frankie “the gleeful cunt” Boyle writes for the Klaxon of the Tory propaganda machine The Sun -the widely read comic which still thinks that tits on page 3 are the way forward. Their report a benefit hotline leaves none of us in any doubt as to their hearts and minds.

What isn’t up for question however is that his so called satire which highlights such mind altering notions as a learning disabled blind boy desperate to fuck his own mother and having to be prevented, is doing the Tory propaganda machines job for them.

As Morgana Robinson gives us Gilbert to laugh at and Angelos Epithemious tickles our mainstream comedy funny bone with his hapless though we are widely assured affectionate demeaning comedy character, these learning disabled characters, I mean eccentric oddballs, brought to us by C4 the broadcaster of the Paralympics make us clutch our sides and cry for mercy. Or they just make some of us cry.

Add in a little Jimmy Carr "What's a Unitard? A special person with a horn sticking out of their head" and the disability denigrating job my friends is done.

They’re so funny to laugh at though aren’t they? Get a sense of humour. Yes as the figures for hate crime on the streets is rising, funny is as funny does eh?

It’s entirely unconnected of course. It’s just a coincidence that the disability benefits so relied, upon so needed, are being sliced and diced and removed post haste.

As our comedy ‘gods’ in this secular society empower the propaganda, the Tory’s can slip in a few more of their assertions that disabled people are lying, scrounging, thieves and sexual deviants then well, of course stop the gravy train immediately.

If we all know, are told and believe, that all disabled people are motherfucking scroungers then who on earth will complain?

My Speech for Mum

2011-12-15T18:52:00.000Z

Mum was born in December 1933 in a Hospital. This was not something most people could afford during the depression but as her mum was a nurse this was free. The NHS had yet to be invented.

Mum was a very good baby so good in fact that she was occasionally forgotten as she lay in her pram causing no trouble to anyone.

This pattern of gentleness was to follow her throughout life.

She was the middle child of Frank and Molly. She was two and a half years younger than her older brother Bill and two and a half years older than her younger brother Noel.

Mum was often teased by her brothers. This was as it should be and it didn’t detract from the love they all had for one another. Mum wasn’t as strong as her brother Bill, nor was she as fast as her brother Noel, but she had patience. After one day where the teasing became too much to bear and with Mum fuming silently at Bill, he took his book into the garden and settled down for his usual read. As he lay there lost in the words, the sight of her brother relaxed and untroubled, prompted mum Mum to take her chance. She looked around for the biggest rock she could carry and threw it as hard as she could at her unsuspecting brother. Then she ran. She heard the yell and ran faster until she found a tree climbed it and waited. Eventually after dark she reasoned that Bill would be calm enough and went home, to find her Mum oblivious to the rock and run but instead disappointed as she’d finished early and had hoped they could go to the pictures. Uncle Bill was fine but as he has no memory of this ever happening, perhaps from concussion.

When Mum was 18 she began training to be a nurse at Selly Oak Hospital in Birmingham, after doing her interim training at the ENT hospital in Shrewsbury. As she had adored her own mum it seemed natural that she follow her into the same career.

At Selly Oak Hospital Mum met two friends Harriet and Dilys. The girls all decided that they would complete their training and travel to East Africa to work. Unfortunately a family crisis meant that Dilys couldn’t leave her parents, so Mum and Harriet boarded the SS Uganda for the three-week journey. In the 1950’s telling her parents that she going to Africa she may well have announced she was flying to the moon. Her father was very worried, as was her mum who took her to the station and stayed watching as the train left.

Mum took a post as a nursing sister at the European hospital and then moved on to work in the African Hospital and it was whilst she was there that she met her husband. They married in 1957 and settled in Nairobi, and my sister Elisa was born the following year, followed 3 years later by my brother Michael. Elisa still remembers one night when she was poorly with the severe asthma which she has had since a very young child, Mum took her on her night shift, tucked her up in an empty bed on the ward and she watched the monkeys climbing the trees outside.

Mum was an accomplished dressmaker and an excellent cook. At Christmas especially she made everything from scratch and in the summer would make jam. From birthday cakes to Christmas trifle and everything in between she had a knack of making things beautifully.

Sadly her own mum, Molly died whist she was in Africa. Mum, still only in her twenties was devastated. He beloved Dad, Frank would live into his eighties and Mum grieved equally when he died.

In 1963 after 8 years of African sunshine they decided to move back to my fathers home country Ireland. My father went on ahead and Mum sorted everything out for the move. Mum had never flown before and sometime after take off one of the planes wheels decided to detach its self.

The pilot announced that they would have to make an emergency landing in Entebbe. With Mum’s usual stoicism and with her 5 year old and two year old to think about Mum distracted Elisa’s questions about the emergency lights on the ground and with her typical calm in the face of a crisis suggested Elisa concentrate on her colouring book.

I was born in 1966. We moved to Dublin and lived there for a year before coming back to England and living first in Chester, then moving to Shrewsbury.

During all of these years our family was joined at various intervals by various cats and dogs and rabbits and gold fish and mice and hampsters. Mum loved animals and her last 3 cats all came to her as strays.

When I was 5 and ready for school, Mum decided to retrain as a midwife so that she could become a health visitor. Which she did meeting a friend, Pat who although 18 years younger than Mum would, like Dilys, prove to be a friend for life.

We’re especially grateful for the friendship and kindness Pat has shown to us in this past decade. Pat told me that Mum once sat through the night in hospital with her son John who at two and a half was very poorly. Pat had been with him for many nights and was exhausted. Mum gently but firmly told her to go home and rest and that she would sit with him. A typical gesture from Mum, made more poignant given that my brother Michael had recently died.

Michael first became unwell in the summer of 1978. It was easy to miss the initial symptoms of his condition because, quite unlike his pale sisters, Michael at 6 ft 3, blonde, blue eyed and tanned was the picture of health.

My father had left prior to Michael becoming ill and so mum coped with the diagnosis of his terminal heart condition and with Michael’s eventual death on Christmas Day 1978 aged 17.

She was broken hearted but again the stoicism of that heart ensured that she continued for her children. So she did.

My parents divorced and Mum transferred to working as a Health Visitor closer to home. She worked with the same Dr’s practice after they relocated and after she retired, they attended her to, until the end.

She was delighted when my sister married Mark whom she was deeply fond of and beyond proud when her first grandchild Nathan arrived, followed by Rosanna and Natasha, Ben and Joe. Both of her son’s in law- Mark and Phil drew Mums admiration because they possess the quality she most admired in a man and which she had seen with her own Dad and brothers, a natural ability to be a good and loving father.

Rosanna made Mum a great grandma when she had her son Max 3 years ago. Her grandchildren gave her some of the happiest times of her life. She had enormous patience and gentleness and would sit with them reading to her, or helping with a jigsaw, or simply listening as they chatted. From birthdays to babysitting Mum was there.

After my O levels I went to 6^th form college and met great friends who Mum was really fond of, Steven and Glyn, Sheridan and Sheila. Along with Debbie who I met through Sheila they are all still close friends who knew mum when she was well and supported us when she became more poorly.

Sheila’s parents Stan and Shirley invited us for Christmas Day. They gave us laughter and love for ten family Christmases in total and helped us to move beyond the hurt of that day. The last time I saw Stan who sadly died last year he was asking after Mum and remembered how at Christmas we’d all want to be on her team for trivial pursuit because she always knew the right answer.

The nursing gene skipped a generation in our case and I had decided on acting as a career. Mum was incredibly supportive of my choice and so I went to a drama school in London in 1986 and came home again in 1992.

My two girls Lizzy and Emily were born in 1994 and 1997 and mum gave me away when Phil and I got married in this church. He and Mum were very close and this meant that he completely understood when in later years, caring for Mum meant time away from him and the girls. Mum’s speech at our wedding was a study in gentleness and also bravery because unlike me she was very shy. I remember the day as being full of laughter.

Emily was diagnosed with autism at the age of 3. This came as a result of Mum’s gentle urging that we get her seen. She had recognised the signs through her work. Mum’s bond with my older daughter Lizzy who was named after her was a joy to behold. I see a lot of mum’s gentleness reflected in her and all her grandchildren.

Mum worked as a health visitor until the age of 65. She brought her usual kindness to bear with the families she worked with and I remember one of her mums giving us the biggest bag of chips I’d ever seen when we bumped into her in the chip-shop where she worked. Mum had supported her though a very difficult time. I know this because the woman told me as she loaded the bag. “Your Mum” she said “is a brilliant woman I wouldn’t have my kids if it wasn’t for her” I was only 14 and very interested to know the details but Mum wouldn’t be drawn. She believed that confidences should be kept and never discussed any of the families she worked with.

At 68 she was diagnosed with Alzheimer’s.

This last decade with Mum proved to be the most challenging, for her. It was also the decade in which we were able to repay a lifelong debt and care for her as she had cared for us. She knew what the diagnosis meant. It was however in the words of the wonderful GP who tended to mum in the last years and crucially the last days of her life -an Honour.

I can’t begin to describe to you how loved and lovely mum was. How beautiful she was, both externally and in her heart. How strong, how compassionate, how intelligent or how elegant she remained even in her last hours. You only need to look to your own memories of her and think about how her face broke in to a smile, or how she would listen to you as you spoke, with complete focus and understanding, to know who and what she was.

Our hearts are broken but because of her love, because of her strength they will mend. That’s the gift she gave us and it will last forever.

No more battles

2011-12-06T21:02:00.001Z

Sitting staring at the clock just now, trying to get myself through the minutes which mean that an entire 24 hours have passed since my mum died.

They’re taking forever.

Alzheimer’s was the reason but however they leave us, whatever age we are, I’m sure most people like me become temporarily five years old again and are transported back to the time when this day first enters our consciousness.

We realise with shattering clarity that one day Mum will die. If your mum was like mine they reassure you that it’ll be a longtime away. For most of us it is.

That fear for me resurfaced through the decade of decline we just travelled through. Past the responsibilities and added pressures through the transference from mother to child and on to yesterday.

Sometimes I felt angry from the exhaustion of caring sometimes resentful and I always felt sad, but I didn’t walk away.

I was constantly reminded by her beautiful face of the love that I had for her, even when her best smiles were reserved for the nurses and carers she grew to know better than her own children.

Sometimes our conversations became like the improv classes I learnt at drama school. I’d play carer or visitor. We’d walk and talk and I’d tell her about myself and call her by her title so as not to frighten her with a familiarity she didn’t recognise.

My heart broke more with these conversations than at any other time because when the world is at times an unforgiving planet being with your Mum is a place of safety. As long as she remembers you.

So today I went to the home and I said goodbye for the last time and they came to take her to the other place. The place where they took my brother on Christmas Day 33 years ago when he was only 17.

Like him she was gentle and kind and strong. His illness was fast and hers was slow but they fought equally bravely until exhausted they couldn’t fight anymore.

No more battles, now they will rest together.

Mum

2011-11-27T06:53:00.000Z

Yesterday afternoon I got a phonecall, saying that mum was having difficulty breathing. She’s been in end stage Alzheimers for a year now.

We got there and mum was unconscious. She was making a terrible rasping rattle as she breathed and her tiny little body was struggling with the attempt.

The nurses from her home were waiting for the out of hours doctor to arrive and I’m embarrassed to say that I panicked.

I spoke to the doctor ,shouted is probably a better description and told him the situation and he sent an ambulance.

I hadn’t thought, I hadn’t stopped to remember the DNR. She’s our mum.

The ambulance arrived and the team took all of mum’s stats. In their opinion she had about two hours and as she is DNR they suggested that we respect her wishes and let her go.

The two hours passed.

She rallied a little, her breathing quieter, less terrifying. Blood began pouring from her mouth at one point, which had me running to find a nurse, but apparently she had bitten her tongue as they think she had a seizure.

She’s peaceful. She’s warm. She’s safe. No one can tell us what’s going to happen.

No one knows.

One of the worst moments arrived without warning yesterday and no one can tell us if it’s still standing beside her or has moved on for now.

There is nothing to do but wait.

What shall we do?

2011-11-20T11:58:00.003Z

Ok so with the firm belief that blogging is like therapy I’m going to relate last night. There aren’t many laughs (for many read none) but I think it’s a story that is common in this big society of ours so here goes.

Yesterday we had a trip out. We haven’t done for several years partly because Emily won’t use toilets that she doesn’t know, (many towels on the car seat for the journey home gets past this one) but mainly because Emmy has been refusing to leave the house unless it’s to go to the supermarket for nearly 2 years.

She started to become violent 18 months ago. It was directed exclusively at me. As I’m in charge of all of her personal care issues this is the logical step for some people with a learning disability as they enter their teenage years.

I call it militant teenager time because if you have limited language punching your mum in the face is much more expedient than trying to formulate the complex neuropath ways required for “fuck off you bitch, I didn’t ask to be born”

I don’t know if many of you have been punched in the face by your child, but it’s not great to be honest. The initial shock and predictable anger response , is tempered in my case by a reworking of how I’d mis-communicated. This was my biggest mistake.

When you have a child who doesn’t communicate you spend all of your time demonstrating how verbal communication is a worthwhile pursuit. Those who ignore a child’s language simply reinforce the child’s belief that words are stupid and pointless.

So as I’ve spent the last ten years trying to see things from Emmy’s point of view understanding her violence came as the next step.

Emmy was diagnosed at three. Precisely because she was non-verbal and lived her life as though she was behind a sheet of glass. She had connected, she had made eye contact she had spoken and walked and reached other major developmental milestones very early.

Then gradually she began to drift away. She stopped responding to her name, stopped making eye contact and became endlessly fascinated with the tiny aspects of the world which surrounded her and which held infinite terror in it’s random complexity.

One by one all the lights which lit the way to our little girl started to extinguish. The pain for Emmy was palpable and there was nothing we could do.

Every night after she was diagnosed when I settled her into bed, I told her I knew she was lost in the dark and I promised her that I would find her.

So I did. She didn’t sleep so neither did I. As the years passed I trawled the internet scaring myself shitless quite frankly by the tales of vaccine damage, mercury poisoning, fillings in my teeth, bowel disorders and the charlatans promises of dietary interventions and behavioural programmes with accompanying inflated price tags.

I read them all and tried to absorb them. As they all seemed to contradict one another and each promised a “cure” my brain reached the point of implosion. I knew I couldn’t do them all and so my brain intervened.

I just thought. “What a load of bollox”

I decided to do it my way. I just carried on raising my girls with love and routines and rules. They were expected to say please and thank you, they were expected to try their best and be kind people, they were expected to be as human as any other child with an eye to their additional needs

As time went on, in doing ‘nothing’ Emmy made the same developmental gains as all the children whose parents turned their lives inside out, with the latest fads and trends.

The biggest marketing tool for the snake-oil salesmen who make a good living from therapies aimed at autistic children, is parental guilt.

As autism often appears from nowhere it’s quite natural for decent people to ask if they may have contributed or at the very least protect their children from further harm. Also as we live in a world where anything but “normal” just won’t do conformity or the promise of it is the hope.

I became fiercely protective of the notion that my children were normal. Aside from an achievable basic politeness why should they be expected to conform to a set of rules that they had no part in creating?

So the first punch was a big surprise. I knew it happened obviously but I wasn’t prepared for the manifestation of the regression of her acquired skills, which now dominate our lives.

She threw me across a supermarket in the summer and cracked my coccyx. She refuses now to go to school and respite or have any personal care. She punches her Dad and has started slapping her gentle sister the unfairness of which, is a greater challenge given The fact that Lizzy has Asperger’s Syndrome.

All this violence arrives without any discernable provocation.

We live in a prison of her making and everyday I watch her struggle and fight within her own tunnel of pain which once again I’m helpless to prevent.

In cases such as ours apparently the answer is more sedatives or residential schools for which the waiting list is two years. I also have to suffer the further indignity of people arriving with big bags full of reward charts and stickers. Firmly telling me between the office hours of 9am-5pm, that Emily is in control and I’ve allowed that to happen.

I have suggested that if they’d like to try their charts on her when she’s throwing a chair at us at 2am I’m more than happy to facilitate that. They usually make their ‘note to self face’ clearly seeing only more evidence of my lack of fitness and culpability.

Last nights descent into massive prolonged violence from Emmy followed a lovely day at Thomas Land, that’s what I’d hoped to blog about today. It had been as ‘normal’ as we get here and we loved it so much.

So here we are. Another Sunday spent counting bruises, clearing up the aftermath and wondering how much more we can all take.

Social services often take little interest at a time when they should be fighting to help choosing instead to play the blame game when families haven’t done the requisite form filling.

Blaming families in crisis seems a sad path for professionals to choose but it is a familiar one.

When they pull their little bureaucrat number I’m reminded again of how often coroners note their catalogue of failings, which result in the preventable deaths of vulnerable people and their broken carers.

A highlight of my week came from a conversation with a disabled friend who noted that anti-social services would be a much better description.

Meanwhile upstairs our girl our beautiful, beautiful, tormented girl sleeps gently.

My old man & me.

2011-11-15T17:46:00.000Z

Loyalty and love. Don’t see much of either of those two things these days and I’ve been thinking about them both a lot lately.

We can be loyal to a team, a singer, a cause, a country, a loved one and a friend. theoretically.But I’m beginning to wonder if the notion of loyalty in these choice filled days of ours is dwindling to a state of quaint obsolescence.

It doesn’t seem to be a highly prized virtue. Yet without loyalty what are we? It is a fallacy to believe that as humans we are evolved further than dogs because dogs are extraordinarily loyal. As I get older I feel that perhaps referring to humans who behave in inhumane ways, as being ‘no better than animals’ does animals a great disservice.

Maybe that’s why TV show’s and novels, songs and film’s presenting friendship groups who support and nurture one another, through the good and bad times are so spectacularly popular.

Maybe this is why we are constantly fascinated by this theme which encompasses love, because so many of us lack the requisite component for making and sticking with a commitment to another human being.

It could be that we live in a disposable age where some of us as readily ditch our life partner as quickly as we do uncomfortable underwear. It could be that the age of battling on and pushing through the pain barrier was one of a previous generation and we are owed perpetual bliss without the effort to compromise.

If you can’t remember rationing you may also not remember the parents for whom marriage was for keeps, not for now.

Possibly the marriage model is the one that we mirror from the one we first experienced but that doesn’t explain my 18 years with Phil. My parents divorced decades ago.

For us we are bonded by our lives thus far in some way that transcends noise and haste. We have pushed through the pain barrier (Phil would say the sound barrier) of many things which I’m reliably informed would have fractured other couples. There have been low points but divorce was never on the agenda. We just fit together like a child’s hand in their parents palm.

We struggle and grumble but we seem to hang on to the love.

Anyway I’m not judging just hurling my ramblings out there into the festering pool of fury drenched commenting that is the internet. Blogs are the counselling of the new millennium after all.

A perfect storm

2011-11-14T08:53:00.010Z

Challenges by the religiously indignant and challenging the popularising of disability hate speech- as identical issues- seem to have brought about something of a confusion on Twitter in recent weeks.

The high priests of comedy those adored for smashing idols and puncturing balloons of myths and mysticism, are now at loggerheads over an issue and as a disability rights campaigner and an atheist, I’m delighted that debate has been raised. As a veteran of the hate campaign which trailed in it's wake I could have done without being savaged by the "cunting trips" which some fans decided to go on, but hey this isn't about me.

To be clear I'm not delighted for any pain caused, certainly not delighted by allegations of career enhancing publicity derived but because my fear's over the articulated lorry that is the mainstream media, rolling inevitably towards the depot marked disability discrimination, the cargo of propaganda by disablist hate speech, is finally seeing the light.

Richard Herring, Ricky Gervais, Stewart Lee and Tim Minchin are geniuses. They use their rapier wit to attack the bigotry of others and the entrenched notions of unquestioning adherence to the rules of the church and it’s teachings.

They like to ask why. They also ask why not?

Intrestingly they also have their own followers. Esteemed by their fans,like latter day Saints of the faith's they rightly question, their followers are now involved in an unholy war of attrition on Twitter. As a casual observer it’s like the evolution of the Crusades as Gervais fans and Lee fans and Herring fans thrash out the details online.

Caitlin Moran has surfaced and like a veritable Mary Magdalene has RT’d Stewart Lee’s Guardian piece, having clearly decided which side of the disability abuse argument she’s now on and her own followers adhering to their “Moran-dments” a set of rules they appear to have derived from her feminist bible, How to be a Woman, are more than happy to oblige.

Jesus might have liked Twitter RTs, it's the foot washing of the digital age. Or he might have been busy thinking about other things.

Add in a waspish review or two from the likes of AA Gill and we have an almost biblical epoch of opinion, counter opinion, glamour glitz and showbiz.

I’m delighted. Because these people are bright people, good people, kind people. People usually on the “right” side of most debates and they are all taking the time to raise the issue which has been closest to my heart and great people like Christina Martin and the blogger @samedifference1 for years.

The Celebrity followers will froth and spew venom attack and belittle and move on. A year from now, will any of these fans give a damn I wonder. Doubtful they’ll probably still be finding creative ways to introduce the word “mong” or "retard" or "spaz" or "window licker" into 140 characters.

Richard Herring has talked about the issue of disablist language repeatedly and as a celebrity supporter for Scope, devotes every tour to raising money for the charity . Ricky Gervais has highlighted the issue of bigotry against disabled people in his co writing with Stephen Merchant for a decade. Stewart Lee has spoken out on his tour and televised show against cruelty and disablism. Tim Minchin works for Autism charities and also uses his shows to reduce stigmatising attitudes and challenging indoctrination.
They all regularly do Charity benefits.

Caitlin Moran has interviewed Lady Gaga. Of course this has nothing to do with challenging issues around disability discrimination, but it's a great interview. She also rapidly removed the phrase "I have all the joyful ebullience of a retard" out of further reprints of her book after it was pointed out to her how offensive this phrase is, so she understands the issue.

To their followers these comedic gods will continue to walk on water and their fans will continue to half grasp the ethical points they raise about offence and the taking of it. The fans will not see any kind of correlation between normalising hate speech and the trickle down effect on disabled people, being verbally abused in the street everyday, because they have no experience of it. They will simply gasp the nettle of religious offence and disability hate speech and see complainers as one and the same.

Adoration is no advocate for nuanced thinking and layered debate. Nor does it have time to appreciate the oft repeated complaint of taking comments out of context. As they twist and rehash the phrase "you have no right not to be offended" and apply it to the debate of hate speech.

Fans will on a pavlovian command simply repeat, retweet and attack where they see fit. A little knowledge is a dangerous thing. For all fans of all participants I would suggest that as many now swoop down to decry and comment, whether legitimately or to further an agenda of their own, a little discerning introspection is required.

This is the word of the adored. Praise be to Nod. (and nodders)

Life's Too Short

2011-11-11T15:41:00.004Z

Like two and a half million other people in the UK I sat down to watch Life’s Too Short last night. Unlike many others I had an additional reason for doing so.

The show has been the centre of something of a media storm over recent weeks. It has been roundly criticised and pre-emptively judged for being offensive seemingly because the plot revolves around short actor Warwick Davis.

From somewhere very far removed from balance some of todays critiques of the first episode are focusing much more on Ricky Gervais’s perceived personality and odd gags referencing Warwick Davis’s height. Much less focus is being given to the ensemble cast, co-writing by Stephen Merchant and Warwick Davis’s incredible, layered performance in the lead.

More worrying is the call from the Radio Times that if you were part of the PC Brigade who hated “mong-gate” or as they put it “were offended by the sloppy use of language, then a cursory look at Life’s Too Short might also get your goat”

This seems odd given the speculation that they decided not to put Gervais and Davis on their front cover outside London because of the controversy arising from his Twitter feed. The PC brigade issue is a thorny one to choose sides on I suppose. Or perhaps it is simply a knee jerk decrying of a nuanced issue.

All I can suggest is that for those who didn’t read it at the time, the Twinterview I did with Ricky Gervais settled that subject conclusively in my mind.

There will always be doubt and hate, that’s the nature of celebrity but whilst the light is unrelentingly shone on recent events, it is obscuring the facts on Life’s Too Short.

It’s funny.

The lead characters height is an incidental aspect. As the show addressed the subject it highlighted and tackled bigoted attitudes once again.

As with all Merchant/Gervais comedies, the bigotry balloon is punctured not exacerbated.

The first series references anecdotes which I gather Warwick Davis has experienced and related. This is the reality of living a diverse life. There is no complaining built into them- just a frank expose of them, which can only be a positive thing.

The inclusion of celebrity cameos is being referenced in a negative way but surely as a famous actor in his own right Warwick Davis must have links and connections of his own. Indeed his own BBC blog details how he took the idea to the writers after appearing in a celebrity cameo himself in Extra’s, the notion of the show needing bolstering, is a bizarre one.

Worse is the idea that Warwick Davis would participate in a show that would belittle and demean anyone including himself. I’m not suggesting he speaks for all short actors, I’m simply attempting to stem the mutterings of exploitation which is patronizing in the extreme.

I campaign on the issue of authentic casting. The genesis of the campaign stemmed from a hope that all people will be represented equally on TV; which it has to be said remains the last bastion of discrimination and faux representation all too often.

Characters whose difference is an incidental aspect to the plot is the goal.

I feel that with Life’s Too Short that time is now.

For Danny, who everyone loved.

2011-11-11T10:22:00.001Z

Daniel George Hill, Lance Corporal in the Argyll and Southern Highlanders was taking a break from his duties manning the machine gun, and enjoying a peaceful cigarette.

It was a calm moment, a rare event during the first battle of the Somme.

Then a mortar bomb landed feet from him and the huge explosion threw him into the supporting wall of the trench shattering his right arm.

Danny was incapacitated briefly. Then he got very annoyed. With his right arm broken, he stood and taking a hand grenade from his pocket he drew the pin with his teeth.

He stood on the trench step and threw the grenade, at which point a bullet passed through his out-stretched hand.

Danny’s battle wasn’t over. The bullet ensured he lost the use of two of his fingers and the battle medical team being what it was he had his broken arm amputated.

Danny was sent home on 100% disability pension and like many disabled veterans struggled to find work.

He was eventually successful however the sad fact was that his employers rewarded his bravery by deducting his disability pension from his pay.

Danny was a great man and struggled and won many battles in his life brought on by the most horrific battle of them all.

He died many years later from a heart attack. His integrity had meant that when his wife urged him to stay at home because he wasn’t feeling well he refused. As a wages clerk he wanted to make sure the men all got paid for Christmas.

As he walked home he collapsed.

Thank you Granddad. For what you did, for what others gave, your grand daughter is free to tell your story

Lest we forget.

A loving mother and an example of hate

2011-11-06T08:26:00.002Z

Disablist language is very much on my mind this morning. Or actually the victims of disablist language.

After Example, a musician with 500,000 followers posted a tweet comparing Frankie Cocozza to a special needs version of a member of One direction or as he called it “Mong” direction, on Twitter a young special needs teacher challenged him and received the predictable savaging from his fans. He is due to appear at a Mencap Benefit soon. So that's ironic.

Why does it keep happening? When did disability become the go to guy for targeted abuse? Why isn’t our legislation drawn to protect disabled people from hate speech in the same way as all targeted groups. It is as an aggravating factor, in crime, which prompts tougher sentences for burglary or assault for example, but that simply isn’t good enough.

It’s hate speech, a crime in and of itself for others.

Again what woke me up this morning were nightmares about Fiona and Francecca.

After ten years of abuse at the hands of a bullying gang both verbal and physical after ten years of being ignored by support services in place to protect them, after ten years of fighting and trying, she killed her severely learning disabled daughter and herself.

She’d planned it and had for several days driven around until she found the right spot. She had, in her view no other choice. She knew the world at it’s harshest and at it’s most real. No-one cared. No-one would help and she knew it.

In the days before they died the family’s house was once again targeted and patrolled by the thugs. They stood outside and the gang leader who led the others in calling Francecca a retard, shouted “we can do whatever we like and there is nothing you can do about it”.

He was right.

Finding the “perfect place” and with Francecca in the back, Fiona doused the car in petrol, set it on fire and got in.

She didn’t want her daughter to be afraid so she put Francecca’s pet rabbit on her knee to calm her.

That detail is the one that makes me cry the most. It’s making me cry now, she was being a good mother, she was trying to soothe her petrified child as she killed her. She knew she couldn’t go on and she thought no-one would care about her daughter afterwards.

The stories about institutionalised abuse of disabled people in residential hospitals, which are now surfacing, bear out her concerns.

It was supposed to be a watershed in the attitudes of service providers, of the police, of communities. It was supposed to be a Stephen Lawrence moment, an opportunity to take stock and make changes. Yet recently all the officers concerned were exonerated.

We all failed Fiona and Francecca, and David Askew and Gemma Hayter. I fiercely defend them, when I challenge a celebrity because that’s what we are supposed to do. We’re supposed to care about others, otherwise what is the point of any of this?

Fiona and many others like her will continue to see murder/suicide as the only escape they have whilst we turn our heads from the injustice they deal with on a daily basis. When we laugh along or let verbal abuse go- because we don’t want to make a fuss; because it’s not our fight, we fail them.

Meanwhile a musician thinks it’s fine to use people like Francecca as the punchline to his joke.

Well it’s not fine by my standards it’s not at all good enough.

Note- After reading this blog Example got in touch on Twitter, he wrote @mrsnickyclark read your blog post. Moving stuff. Let me know if you ever need help raising awareness for anything

Tomorrow is another day

2011-10-29T08:28:00.002+01:00

Last Friday Emmy’s Psychiatrist had a catch up meeting with us.

He’s a nice man with a very friendly name. He sounds like a character from a Beatrix Potter story.

He used a word that I don’t like though, one that I’ve hated and feared ever since Emily was diagnosed. That word is regression.

Regression can occur when all of the developmental skills your child gains disappear. A 3 year old in full meltdown is challenging but a 14 year old throwing you across a supermarket is something else.

All parents are delighted when their children achieve their developmental milestones. It’s a step further down the road to an independent life.

No matter what level of ability your child has, our job as parents is to raise them right and let them go.

As Emmy has grown up I’ve spent a disproportionate amount of my life watching other people. She has a fascination for mirrors and shop windows, ponds and fountains. Basically, anything with a reflective surface.Sitting with her, sometimes for hours in the last decade, as she inspects reflections, I've have a chance to see the world of others pass by me, I’ve seen many elderly carers and their adult disabled children.

So as the Psychiatrist talked about the fact that Emmy was regressing and gently raised the subject of residential schools, I listened and folded my arms and smiled and slammed the shutters on the metaphorical queue of feelings waiting to be fed.

I can intellectualise it. I’m fierce about it. I have no right to be over protective. I have no right to wrap her up and rob her of her experiences. I know that we won’t live forever. I know that Emmy must be given the freedom to live her life.

I know this, I believe this, that’s why I’ve always fought for respite and encourage as many parents as I can to do the same. It’s also why I campaign to change attitudes towards disabled people in an effort to reduce stigma and bullying.

Emmy by virtue of her needs will have a life lived at the behest of others. Following in the main, an agenda dictated by others. This is the reality. I’d be being a bad mother not a good one if I stood in the way of this happening when she’s ready.

For other people in my situation society frowns on the reality we are faced with. Good people have to make this choice everyday. Loving parents devoted and kind are judged by other parents blessed with much easier lives and found wanting.

So that’s been my struggle for the last seven days. As we know heartbreak isn’t an intellectual pursuit.

Yeah , yeah , yeah, Whatever.Now buy my fucking perfume.

2011-10-26T14:28:00.004+01:00

Sorry isn’t the hardest word. It’s easy, I say it all the time. Those who mis-speak or do so without fully understanding the consequences, apologise. Anyone else is just a bigot. A bigot with a TV show maybe, but a bigot none the less.

I had unprecedented levels of abuse hurled at me for the last ten days and have remained as calm as I can, only telling one person to fuck off and that was when I was accused of PR and spin.

Yep that’s right I “got” pregnant and had two children so that all these years later I could ask a celebrity not to use a word and he would phone me.

My mum has been complicit in this too by getting Alzheimer’s disease and my brother died at 17 just to secure me a back-story. SCORE.

You don’t like me fine, you don’t like what I do fine, but don’t slag me off and call me a PC idiot because as a carer "yourself" you can’t stand the fact that I campaign on issues that mean the most to me. Semantics may seem like a trivial issue in these austere times but you know what they’re not.

Carers aren't saints they're people and some of us, as with any group of people are total twats. (not me obviously remember I'm just in it for the glory)

When the people who know, who understand a horror like genocide detail back to it’s root cause they find its genesis is found in the language of disenfranchisement.

Verbal abuse doesn’t kill people but it underpins a society, which can casually ignore an inconvenient truth. We are becoming callous and indifferent to pain. More than that, as in any global recession, we need to blame someone.

Sticks and stones break bones, not words, but before the first blow was struck to Gemma Hayter a learning disabled woman who was tortured and murdered, you can bet your last penny that they will have been calling her one of many choice hate speech words for disability.

She was a thing to her murders, a toy to pick up and put down and leave to die broken, alone and naked by a railway line. Because they could, because she thought they were her friends.

But hey remember that means nothing to me. I’m in it for the self-aggrandisement. For the publicity, for the fucking glory. I’m in it to police the thoughts and language of the great and good and by God those with an axe to grind are out there to tell me that. Because they know best- much better than me. What do I know?

I’ve been accused of caving too, of allowing myself to be manipulated and convinced by a conversation with a big star. No not true.

I’ve had ten years of bullshit and excuses. Local councils,service providers, political people and agents of other big stars, because this isn’t my first time down the road of disablist language and celebrity. I think I know the difference between genuine regret and arse saving exercises.

What I am is cynical and hopefully discerning but hey don’t believe that either, it’s much easier to believe something bad of me it’s much more comforting.

I questioned not the body of work but the tweets. 140 characters is a harsh parameter to try and express yourself effectively. Couple that with a word and photo’s and bingo. That’s what I challenged. Over and over again for two weeks.

In fictional life language is used to represent the world as it is. Harsh people say harsh things but popularising this language in these celebrity-worshipping days of ours, is a dangerous game for a good man to play. Above anyone else, I assume he knows that now.

I don't know him but I hope thats true. I want to believe, that no-one would feign concern.

But of course this isn’t what I believe in is it -I believe in stopping “fun”, in halting creativity. Really I'm pro book burning.

Make me a Mary Whitehouse if you wish it’s much easier to see what you want to see. Nuance is much more tiring. You can say what you like, that’s what’s so great about free speech. It’s not the first time I’ve heard it, that’s why my twitter name includes my married title. A little joke there do you see. I know what people will accuse me of so I got in there first. Irony eh?

People writing to me in the last week and calling me a cunt, don’t actually know that with Emily going through an extraordinarily difficult time at the moment, a good day for me is not getting punched in the face, so being called a cunt is truly the least of my worries.

Passionate belief in the power of words is what drives me, not censorship. I’ve always believed that other people’s opinion of me is none of my business. That’s fine, except on twitter other people’s opinions are made very clear because they add my Twitter name.

If you have a disabled child and you want to call them a mong knock yourself out, I think that’s foul but hey it’s none of my business. I wouldn’t do it but then I’m not you am I?

I’m just a PC idiot who is talking rubbish, apparently. Just keep one thing in mind. The day your child comes home and sobs because someone called him or her a “mong” a “retard” or a “spazz” and is broken by it. Just remember that you once thought that was fine. You played your part.

It was in your view just a word. It only means idiot right?

When Nicky 'met' Ricky

2011-10-21T20:02:00.001+01:00

Today Ricky Gervais phoned me to explain his use of the word "mong" on Twitter. He didn't have to or answer any of the questions I subsequently asked him on Twitter. The 140 character limit explains the short replies.

RG-A very public thank you for your kind, rational and understanding words in private.

NC-Thank you for getting in touch. Do you mind if I ask you a couple of things? Nik

RG-Ask away.

NC-I now understand that you didn't and wouldn't intentionally hurt anyone. Do you understand why people got upset by it ?

RG-I do now. Never dreamed that idiots still use that word aimed at people with Down's Syndrome. Still find it hard to believe

NC-How has the response to your use of it online and in the press made you feel ?

RG-A mixture of confusion, anger, terror and disappointment. But mostly naive. Never meant the word like that and never word.

NC-Some of your followers have attacked people like me for criticising you over this do you condone this behaviour?

RG-Definitely not - reason I contacted you to be honest. The hate mail I had was psychotic and wouldn't wish that on anyone.

RG-What do you think of how the press have portrayed me, out of interest?

NC-I think that had I not spoken to you,I would have believed that you were a bully.The tweets seemed out of step with your work

RG-Cheers. Understandable Using that word to mean DS WOULD be bullying. I'm glad people now realise I'm an idiot instead. Ha ha

NC-Many people have been confused by your tweets to anyone who has been hurt by them what would you say?

RG-Well all I can do is apologise and hope they don't confuse those people's views with mine. ( meeting now back in an hour)

RG-This is better than Frost and Nixon by the way. Speak later

****************

RG-And we're back. (Sweaty, but raring to go)

NC-hello again.Aside from the words you were using you also posted photo's pulling faces.Was that supposed to be someone disabled?

RG-No. The point is to look as hideous as possible without the use of props. Not a great art form I'll admit. Ha ha

RG-Interestingly chat shows and newspapers have shown them many times. but comedy is about timing I guess. Whoops.

NC-You have adopted a new word in place of your old one people might worry that it's similar to mongol.How do you respond?

RG-Yes it seems even a brand new made up word with no history can cause offence. I wanted to show that a word needs intent.

NC-I've seen the youtube clips of your character Derek Noakes. Is he supposed to be a man with a learning disability?

RG-Hello sorry. Long bath watching "Pointless" Can I answer this question on email then you can post it? I don't know how. Ha

RG-Can't do it in 140 characters. Writing now

(emailed response)

RG-I've never thought of Derek as disabled per se. Definitely nothing specific. Not Down's Syndrome, Autistic or someone with mental health problems.
He's certainly "different". But when does a bit weird become an official disability? it's ambiguous and he's certainly an outsider. He's based on some of the strange people that collect autographs or train spot (Oh dear now I'm really in trouble) but not in a sneery way. I love Derek. He's funny, happy, empowered and absolutely charming. I guess I've crossed a nerd with a child.
i think in the present climate people will assume this has to be cruel because he's not the "smartest tool in the box" but it's not at all. We could go back and question many comedy characters. What's Mr Bean for christ sake? DP Gumby? Everyone in The League of Gentleman? They're "weird" sure but "weird" people can't help who they are any more than any one with any form of learning disabilities.

Was it something I typed?

2011-10-17T19:46:00.004+01:00

Ah twitter how do I love thee let me count the ways.

Whether you on Twitter during a national event like a Royal Wedding, an unreported protest march, The X factor, a party conference or pretty much anywhere Gazza may go with a fishing rod, some cans and a bucket of Kentucky fried Chicken, being on Twitter with tweets and hashtags flying makes it more enjoyable.

There are downsides obviously such is the internet but in the main it’s a positively functioning relationship.

There are also the added benefits of the great, the good, the obscure, the funny and the kind.

And celebrities.

In the olden days of the wheezing and turgidly slow snail mail, metaphorically reaching out and touching the object of your affection was a slow business. Yet now anyone with a smart phone can send a tweet to a star and if they’re lucky they will get a reply. Sometimes it’s actually them.

Sometimes it isn’t.

But the whole point is that they are perceived to be accessible. This has taken fandom to a whole new level.

I’m not immune. I’ve sent fan mail, I’ve sent email and I’ve tweeted stars. But it’s the aspect of the super fan, the fan of fans, the vicious fan, that I’m thinking of as I type this.

You see that tsunami of love if handled properly can be tamed and managed and sent replete with it’s awesome power back the other way.

It’s a win, win. You the star remain mute yet unaffected or you may reply with dignified restraint and if you’re big enough, if your follower count is high enough the fans do the rest.

Hailed as one, the flying monkeys leap into the air and travel malevolently to the object of their venom. It could be a critic or a journalist or a disability rights campaigner.

They may have just be doing their job or pointing out a fact or asking for reason. It really doesn’t matter what their motivation is. Their motivation ceases to be a mitigating or relevant factor.

What is at stake is the perceived harm done to their beloved.

So they must pay.

Their beloved must know that they are paying though. They must know that this is a crusade on their behalf so their name is added to the comments :

@haplesscritic Um like you don’t know anything fuck off you cunt @mybelovedstar

The addition of the star name reclines like a kiss at the bottom of a poison pen letter.

The star thoroughly satiated that their work has been done without them having to lift an immaculately manicured finger then tweets lukewarm rebuke and gentle caution.

Like every bullying gang ringleader calling their henchmen to heel.

The great stars reply to critics either in a muted way or not at all. The greatest example of a response is Charlie Brooker who retains the comment and replies, but withholds the username.

Win Win.

People fall out and misinterpret and it will always be this way with written communication. There is little room for nuance in 140 characters, but going “cunting” with a pack, makes you look like a fool and ultimately seems to undermine the whole point of Twitter to me.

Pampered preening stars turning Twitter into an anti social network seems a little sad.

What does the Word "mong" mean?

2011-10-16T18:32:00.001+01:00

In order to alleviate any lingering confusion over what words mean here is the Terminology Guide from the Down's Syndrome Association. They are widely regarded as the authority on language given their extensive knowledge and membership data base. Don't use the word unless you want to be deliberately offensive, would be my advice.

Best Nik xx

Terminology Guide:

Down’s syndrome - What to say (and not to say)

When speaking about issues relating to Down’s syndrome in a way that is both factually accurate and inoffensive to the general public, including people with Down’s syndrome and their families please consider the table below.

We are sure you share our concerns so please take a minute to check that your copy is in line with the following language guidelines and that you are not perpetuating any myths about the condition.

DON'T SAY	DO SAY
Mongol or Mong	Person/baby/child with Down's syndrome
Suffers from OR is a victim of Down's syndrome	Has Down's Syndrome
A Down's baby/person/child	A person/baby/child with Down's syndrome or who has Down's syndrome
Retarded/mentally handicapped/backward	Learning disability
Disease/illness/handicap	Condition OR genetic condition
Down’s (as an abbreviation)	DS (as an abbreviation if necessary)

MYTHS	FACTS
People with Down's syndrome don't live very long.	Today, people with Down's syndrome can look forward to a life of 60 years plus.
Only older mothers have babies with Down's syndrome.	Although older mothers have a higher individual chance of having a baby with Down's syndrome, more are born to younger mothers, reflecting the higher birth rate in this age group.
People with Down's syndrome cannot achieve normal life goals.	With the right support, they can. The vast majority of people with Down's syndrome learn to walk and talk, and many are now attending mainstream schools, passing GCSEs and living full, semi-independent adult lives.
People with Down's syndrome all look the same.	There are certain physical characteristics that can occur. People with Down's syndrome can have all of them or none. A person with Down's syndrome will always look more like his or her close family than someone else with the condition.
People with Down's syndrome are always happy and affectionate.	We are all individuals and people with Down's syndrome are no different to anyone else in their character traits and varying moods.

If have any questions about anything to do with Down’s Syndrome please contact the Down’s Syndrome Association on 0845 230 0732

The Atheist in the room and God bless us everyone

2011-10-15T23:38:00.002+01:00

Well our Christmas tree is up. Yes I know it’s the 15th of October and that we haven’t even had Halloween yet but Emily has had a difficult couple of years since she had a seizure two Christmases ago so we saw her keenness to get a tree as a good sign.

It wasn’t a lengthy seizure her last one lasted a terrifyingly long twelve minutes. Due deference to all those who have longer and more serious episodes. That must be unimaginable; this was bad enough and left her unable to speak clearly for two days.

It does however mean we will be running the gauntlet of the disapprovers.
I have my responses prepared.

1) Yes I do know it’s only October.
2) Yes I know we haven’t even had Halloween yet.
3) Yes it is shocking that Christmas gets earlier every year and that this this takes the biscuit.

I won’t say this with words though. I’ll smile and say something a lot less confrontational and a lot more ameliorating and end up with a Herbert Lom honouring eye twitch by Christmas Day.

We’re also not quite at her therapeutic dose for her anti-depressants and her violence is really starting to take it’s toll on me after 20 months.

This isn’t a parent whinge just a statement of fact. I understand why and I know it’s not her fault so that’s that. To be 14 is tough enough let alone being learning disabled with Autism.

Anyway the weekends are really hard so what her refusing school and respite and my coccyx still healing after being lobbed across Sainsbutys in the summer I’m probably feeling a little oversensitive.

Tonight was very bad and once the meltdown had settled sufficiently to get her epilepsy meds into her we all headed out grim faced to go to Sainsbury’s.

It’s not wise clearly but it’s her only trip anywhere. We’d negotiated the demands and drawn up a list and were determined to follow the list to the letter. To her credit and after a short chat with a community policeman (willing to try anything) who was very nice we got it sorted.

Heading to the car a woman got out of her car which was parked in a disabled bay. She limped as she walked away but by the time she reached the entrance she was walking normally again. I checked her car parked next to ours and surprise surprise (not) there was no badge.

This really pisses me off.

When you think what is being done to disabled people the length and breadth of our “civilised” nation currently deemed scroungers and being stripped of their crucial benefits; people like that woman are a fine example of “people” who need to have a word with themselves.

Granted there were other spaces, granted she may have had a hidden disability but badges are hard to get and if you’re disabled or a carer you always display your badge. You don’t want to be one of those people. Those people are foul.

So no she wasn’t disabled. She was just lazy.

I think what it demonstrated to me again is just how far from understanding, compassion and tolerance we as a society have fallen as the targets de jour of the government and their pals in the right wing media are now disabled people. When did that happen?

Anyway I didn’t say anything this time. I didn’t trust myself. When you’re on the edge of losing your temper it only takes a little thing. I have to keep calm and patient so much at home that an opportunity to shout in the face of a selfish asshole may prove too tempting.

Plus I think it would possibly have sent the wrong message to Emily. It would have been mortifying to have found myself under arrest by that lovely community support officer.

My names Nicky Clark and I'm a Twitter addict

2011-10-13T12:14:00.001+01:00

So day one of my Twitter detox failed spectacularly when I reflexively signed into my page. But I will triumph.

It did mean that I got to see all the lovely messages though so thank you so much for that.

Please know I didn’t leave because of Trolls they’re a necessary irritation of our virtual lives. I left for much more predictable reasons. I couldn’t stop crying.

The battle over disablist language will roll on without me. One day I’m sure a celebrity keen to defend their right to free speech will publicly debate with me but until they choose to do so the conversation will remain a little one sided.

I know why I campaign. I’ve known that from the first day I saw the hatred and contempt which some people have for their fellow men.

Targets in a time of recessions are very necessary it seems. When times are good when we prosper and reflect we can look about us and remain unaffected.
Silent but compassionate.

In tough times however when we are all leveled by fear we cast around for a group to hate a group to blame and this time it’s disabled people. Whether in government policies or a Comedian’s punchline disabled people are increasingly becoming the go to guy for the lazy man.

All fine but when intelligent articulate left leaning but right thinking people begin it it’s worrying.

Sarah Silverman the poster girl for fuck you humour has made it something of a speciality. She’s very, very good at seeing the line, approaching the line, crossing the line and laughing from the otherside.

Very clever. The problem is the bigots dragged along in the wake of “hate” don’t trouble themselves to look for the intricate subtle intellectual subtext.

So that’s why I protest. Not because I misunderstand irony, not because I’m the Mary Whitehouse of comedy but because those with massive fan base cocooned in luxury and self satisfied playtimes are making lives for disabled people worse.

They are equipping bigots with “justifiable” hate speech. Fiona Pilkington and her daughter Francecca had abusive words used at them routinely. Every day for ten years the bullying gang would hound her and her family. They complained and nothing was done.

When famous people use the same epithets for disability they remind me of the gang leader standing outside the Pilkington's house who yelled “we can do what ever we like and there’s nothing you can do about it”

Intellectualising abusive terms, doesn’t diminish their power. It just gives them credibility.

Anyway I will continue to battle my Twitter addiction and if I fall off the wagon you’ll be the first to know.

Please RT it will help immensely.

Guest Blog-London Deaf Learners

2011-10-13T11:03:00.000+01:00

PRESS RELEASE

DATE: 10/10/11

DEAF STUDENTS GET HELP TO BOOST WORKPLACE EQUALITY

LONDON’S Deaf students are being given a helping hand to make the leap into higher education so they can join the next generation of business leaders.

Currently Deaf students make up just 0.17 per cent of all UK university applicants and for those that do graduate unemployment levels have doubled in the last two years.

Often the application process for university and the workplace is a minefield for Deaf people where they are held back by a lack of sign language interpreters and a poor understanding of the needs of the hearing impaired.

Now Abdisalan Gas, founder of Deaf Unity, is launching London Deaf Learners to help the capital’s young Deaf community overcome these barriers and fulfil their true potential.

Abdi, 27, explained his motivation for setting up the new initiative: “There are a lot of incredibly smart Deaf people in this city but they are denied the opportunity of a place at university or a good job because the interview process is seldom set up with Deaf people in mind – for instance the provision of interpreters can be an incredibly complex process.

“A Deaf person has to fight for access or adjustment but they fear that speaking up will be interpreted as being a trouble maker seeking an unfair advantage.

“As a consequence many lack the confidence to apply and they massively sell themselves short. As a Deaf person myself, when I applied to study at university I found the process stressful and bewildering.”

Skill training workshops available through London Deaf Learners will include interview technique coaching, CV clinics, presentation training and mentoring sessions.

The new scheme will be unveiled on October 20th at City Hall. It is supported by the London Sustainable Development Commission’s London Leaders programme, which is backed by the Mayor of London, Boris Johnson.

Boris Johnson said: "This is a great project from one of our London Leaders. I look forward to seeing this programme support Deaf Londoners into university and capitalise on all the opportunities our great city has to offer."

Deaf Unity is also forming a London-wide Deaf alumni network which will act as a resource for any members of the Deaf community facing discrimination or barriers to employment.

Abdi said: “We need to show that there is a demand for change so we are calling on the Deaf community to get involved and spread the word about the project.”

For more information on London Deaf Learners and how to get involved visit

Anyone wishing to attend the launch in October can register here:

For media enquiries contact Gemma Keogh, Arc Seven Communications, gemma.keogh@arcseven.co.uk, t - 01373 301904, m – 07861222496

ENDS

Notes to Editors

About Deaf Unity

· Deaf Unity aims to improve the quality of life of Deaf people in the UK and worldwide.

· Deaf Unity aims to raise awareness of Deaf culture and language and advocate in the interests of Deaf people to eliminate disadvantage and suffering.

· Abdi Gas was appointed as a London Leader of 2011, in recognition of Deaf Unity and this project’s aim to meet the LDSC’s sustainable development priorities.

Leaving Twitter

2011-10-13T01:37:00.000+01:00

I've really loved twitter. probably a little too much if I'm completely honest. I've certainly spent lots of time on here.

It's given me the biggest laughs and lots of tears most of them in the last 3 weeks I have to say. It's certainly given me an outlet when the responsibilities of caring have been overwhelming.

I'm sorry that some people, great people, famous people who I admire don't get what I'm trying to say but I'm a little weary of trying to turn the tide.

Say what you like but don't accuse me of motives that you can't recognise in yourself.Kindness as our mothers used to tell us costs nothing. To some it's also worth nothing.

Take care tweets.

Nik xx

Out of the Loop

2011-10-08T15:09:00.004+01:00

Who doesn’t love The Thick of It?

There aren't enough good words to describe it adequately in the English language. I don’t speak any other languages so I’ll have to leave it there but suffice to say that I love it.

I also love many people who just happen to be on the autistic spectrum. Now there are many challenges in life lived with autism but I happen to be of the opinion that autism gives us who aren’t on the spectrum much to be grateful for. Art, poetry, literature scientific excellence computer wizardry and the elements of the wonder that is the internet.

There is a theory that Bill Gates is on the Autistic spectrum. I can neither confirm nor deny this but I like to think it’s true. With everything he has achieved, with everything he is using his great wealth to improve he is an amazing ambassador for the condition.

Anyway I digress but I think I’ve made my point. I wouldn’t dream of claiming to know everything about autism, even academics studying the condition for decades wouldn’t attempt to do that.

I do know that it is a massively misunderstood and misrepresented condition. I’ve seen from my children’s teachers, I seen it from their peers. I’ve seen it from people on the streets I’ve seen it from medical professionals and social workers. I’ve seen it from my own friends and extended family. People don’t really understand and even if they have some knowledge they still don’t make many allowances.

In short I’ve seen the pervasive stubborn, offensive and just plain ignorant misunderstanding of autism, which leads us towards stigma and bullying. When I see disablism I challenge it. No matter who you are, or more importantly who you think you are.

It was quite vogue a few years ago to use autism as an abusive belittling term. People like the great writer Nick Hornby was often quoted in the press brilliantly responding to some politician or actor using the new cool epithet for socially inept or aggressive and urging that this playground name-calling stop.

When it comes to name calling no-one does it better than Malcom Tucker. He’s written so brilliantly so vividly as are all of the characters in the series. He is the spin doctor to end them all and the language he uses is the language of an angry, highly articulate H bomb.

He is fictional.

If he or any of the other characters use epithets for disability or impairments within the show they are doing so as characters. They don’t represent anything other than the mythical situation they portray. The characters don’t speak for the actors, the actors speak the words of the writers.

The audience know this and if they don’t they should.

So I watch and enjoy and recognise the difference.

The other night I had some time and decided to watch the special features. I hold my hand up and cry saddo because I am. My theory is don’t put the special features on there unless you want us saddo’s to watch them.

You do, so we will.

I watched Rebecca Front and Joanne Scanlan talking about Malcom Tucker’s nemesis. Steve Fleming, the other spin doctor brought in seemingly to replace Malcom.

He’s foul, so I completely agreed with their assessment of him as being : A bullshitter, fake, unauthentic, smarmy, peculiar, kissy kissy and unctuous.

Then it cut to an interview with Adam Tandy the programmes producer. Not an actor pretending to be a producer.

This is when the wheels fell off my enjoyment wagon.

Adam Tandy reclining nonchalantly in badge and Lanyard like the BBC guy he is said this:

“We know that Malcolm can be aggressive but charming whereas Steve Fleming is the opposite. He would like to think that he is essentially charming although it’s a pretty AUTISTIC form of charm… “

WOAH WHAT?

(rewind)

“He would like to think that he is essentially charming although it’s a pretty autistic form of charm”.

(pause turn up volume rewind)

HE WOULD LIKE TO THINK HE”S CHARMING BUT IT”S A PRETTY AUTISTIC FORM OF CHARM.

(pause) (play) “but if he’s confronted he’s…it’s like..he’s very passive aggressive you know he will turn and snap at some point.”

WHAT? So having established from the other actors just how foul Steve Fleming is just how unpleasant and snide and oily and devious he is, the final tin lidding coup de grace is the cod diagnosis of AUTISM?

Like everything that went before wasn’t enough to paint a little picture. Apart from which, people with Autism may be many things but passive aggressive isn’t one of them. In my experience they can be passive and they can be aggressive but not passive aggressive ever.

There is no logic to that. The reason so many people with autism have difficulty in social situations with neurotypical people is precisely the fact that so many neurotypical people are passive aggressive and it makes reading the situation impossible and stressful. Also people with autism often have a real fear of social situations not something Steve Fleming seems to suffer from he’s just a dick.

I sat and seethed for a while and then I remembered that because of people with autism spending hours in dark rooms resurfacing the information superhighway we now have things like Twitter.

I had a way of asking the person what the thinking was behind the throwaway soundbite. I needn’t wait to relay my complaint through bored TV call handlers or admin clerks tasked with listening to infuriated viewers only to reach the dead end of an unattributed, hard copy non apology, apology/denial.

I got on Twitter and I asked Adam Tandy directly

@mrsnickyclarknicky clark
@adamtandy Hi just watching The Thick of It special features- You describe Steve Fleming as having "A pretty autistic form of charm" Why? .

Later that evening to his credit he replied asking for my email address as he wanted to explain his comment.

I thought that as his comment was accessible to everyone who has a copy of the DVD then his explanation should be too, but I felt it only fair to allow him to respond. So I sent it to him by DM.

Today whilst standing waiting for a lift that Emily would be happy to ride in (IE one that didn’t contain other people after a very difficult shopping trip that had followed a night of no sleep and her seriously on the edge of a stress induced seizure) I got Adam Tandy’s response.

I’m sharing it now probably because it’s annoyed me in it’s patronising “mansplaining” but also because he completely and spectacularly missed the point. Also because this shouldn’t get swept under anymore BBC embossed carpets.

Autism isn’t a coverall for horrible or unpleasant. It’s not a condition to be equated with unctuous, or bullshitter or unauthentic. The whole beauty about people with Autism is their unfailing honesty and LACK of passive aggression. If you don’t understand the word use another and if all else fails buy a fucking thesaurus.

Anyway this is his response.

Hello there.

I'm sorry not to respond before the weekend, but work has been hectic and my Twitter client managed to spontaneously delete the direct message from you; maybe I shouldn't have taken your advice and unfollowed you so promptly.

Anyway, (thanks to the tweet cache in my other computer...) here are the relevant tweets from your Twitter...

@mrsnickyclarknicky clark
@adamtandy Hi just watching The Thick of It special features- You describe Steve Fleming as having "A pretty autistic form of charm" Why?

@mrsnickyclarknicky clark
I mean seriously did a fucking memo go out to people in the media if in doubt use disability as a cover all negative term?

I hope the following answers the first of your questions.

Steve Fleming was created to be Malcolm's nemesis in The Thick of It but, when developing his character in conversation with actor David Haig, we wanted to make him more than just a one-shot villain or a clone of Malcolm. We wanted to give Steve enough of a rounded character to make him real enough for the actor to to be able to build on the part with improvisation. So, like all the characters in The Thick Of It, there's a fairly well-developed back-story, and character.

Steve's manner with people - his lack of interpersonal skills - is flagged up throughout the script by other characters ("Obsessive Repulsive Disorder", says Olly). And his efforts at compliments and jokes have a "studied" quality to them which usually backfire ("Your face looks quite gaunt and muscly"). They don't find him easy to be with. Look at the way Nicola Murray freezes up when hugged by Steve. And Steve always fails to pick up on this, and continues regardless. Likewise, his own acknowledgement of his difficulty in this area is indicative of his frustrations in dealing with people. (e.g. "I did get the joke by the way") When he loses control of a situation he becomes aggressive, throwing tantrums. He gets out of his depth in conversational banter very quickly and resorts to anger, ("We're in government..." ventures Olly, in the DoSAC meeting at the start of episode 8, prompting a violent outburst from Steve...).

Now, I am absolutely not going to pretend I am an expert in autism or even properly appreciate the wide spectrum of autism-related disorders but I would contend that it is acceptable to describe elements of Steve's behaviour as "autistic". That is not to say that he would be diagnosed as such by a doctor, but in the dictionary sense of the word of having--

difficulty in communicating and forming relationships with other people and in using language and abstract concepts.

-- in the same way that I might describe someone's involuntary uncontrolled muscle movement as "spastic" I suppose. I am not name-calling here, merely describing, and I am (a bit) offended that you think I might casually throw those terms around as a matter of habit whenever I feel like abusing someone. Or, indeed to be lumped together with all the "people in the media", as if we were some kind of separate (lower) order of humanity. We are all different. We are all individuals.

Anyway, I'm sorry you felt cross enough to tweet about this and I'm even more sorry that it spoiled your enjoyment of our programme which, with all things considered, is intended to be a comedy.
Kind regards
Adam Tandy.

He may be a lovely man who knows. He might give to charity and be lovely to his family and generous to his friends. But the measure of people is in the treatment of those we don’t have to be nice to.

His reply reads as though he is arrogant sadly. It made me tired to think he was offended by me. It made me sad to think that his response was one of predictable defensive denial.

Needless Cruelty

2011-10-05T09:05:00.012+01:00

Since re-joining Twitter a few days ago Ricky Gervais has repeatedly used the word "mong" in his tweets.I've publicly praised Ricky Gervais and Stephen Merchant for their writing which addresses stigma and bigotry levelled against disabled people. So I was very sad to see his casual use of mocking epithets.

"Mong" means Downs Syndrome everyone knows that. To call himself or other people that doesn't lessen the cruelty it just perpetuates hate speech. Just because it's not aimed at someone with a learning disability but rather about someone with a learning disability doesn't make it less demeaning. Learning disabled people are much more than that.

I've re-worded his campaigning film about animal cruelty to reflect my thoughts on his use of the word. I have replaced his references to the cruel sport of bullfighting with references to disability all the other words are his.

You can see the original at the bottom of this blog. It's his heartfelt plea for animal cruelty to stop.
Imitation is the sincerest form of flattery so here is mine.

“Yeah yeah it’s a tough one. And of course you know there is a big difference between beating to death a woman who can’t fight back and using references for disability to exercise free speech. Of course there’s no doubt about that.

There’s a big difference. But…I mean, it’s more fundamental than that. There’s still.. There’s still bigotry in the world. Verbal abuse on the streets, because it’s funny, because it’s "cool to be cruel". You really want to see a learning disabled adult or child have “mong” screamed at them in the street because, a celebrity made them think its ok?

You really.. you really get off on that do you? I cheer when a famous person improves the lives of others, I love it. You (can't justify hate speech in the name of free speech it does too much damage and thats the result) You know. It’s not a fair fight.

People mocking for pleasure. They’re people, justifying epithets for learning disability because they’re “anti-Political Correctness”.

I don’t know what to fucking do with them. Just think, why are you doing it? Why’d you need that? Crazy. It’s just crazy. I say, I’m going to crack a few heads. But anyway…”

Ricky Gervais on cruelty to animals

My brother Michael

2011-10-03T10:07:00.003+01:00

On the 25th December 1978 just before 4am Michael asked Mum if he could be greedy and have some more iced water. As she walked back with his drink she heard him die. He was 17 years old.

Michael like my sister Elisa, 3 years earlier, had been born in Kenya on 3rd October 1961. I met him 5 years later when he and my sister were brought to the Belfast Hospital where I was born. Apparently my Mum said ‘There you are Michael you have someone to boss around now.” according to my Mum he said “and someone to kiss”

The fact was that the reverse was actually true. I’m very bossy, and hug and kiss everyone. Very tactile me, it was always commented on particularly because everyone else in my family was so reserved. We’ve since learned that in fact it’s likely that everyone I grew up with is on the Autistic Spectrum to a greater or lesser degree, except me.

My brother was tall and blond and tanned whilst my sister and I are medium height, dark and pale. We don’t tan so much as freckle or burn. He exuded physical perfection ,which was why when the symptoms of the heart and lung condition which would kill him, first surfaced it was missed.

The first time I noticed anything was wrong was our last holiday with my Dad still with us. We were walking and my brother kept stopping to rest. Then he gave up altogether. He went back to school and during a run in full CCF kit he’d started coughing up blood. Then he passed out.

The other boys found this “weakness” in such a handsome threat, a rich hunting ground for cruelty.They derived pleasure from letting him know that.

He went to the Dr who detected a heart murmur and referred him for tests.

My Father had left in the autumn before Michael was diagnosed and so Mike did what he felt he had to do. He hid his symptoms. Fighting his exhaustion and breathlessness he dug the garden and emptied the bins and cut the grass. All the things my dad had done.

He endured two cardiac catheterisations and when the Consultant got the results the diagnosis was primary pulmonary hypertension and the prognosis was 10-15 years of eventual decline then death. They were doing some trials for some new drugs and procedures and Mike was included for the trial which was to begin in January 1979. Had he lived he might have had a heart and lung transplant.

Mum was travelling to her job as a health visitor and Mike by now needing to be off school would get up and dressed before she left and then spend the rest of the day in bed. Then just before she was due home he would get up and act as though he had been up all day. Mum asked for time off after the diagnosis. Her manager refused.

Because I was twelve and because this was the 70’s nobody told me anything except the bare minimum. I knew he was in bed a lot and I knew he seemed much less patient than normal but aside from that nothing much. Apart from one conversation.

He said “I know you don’t like boys much at the moment but one day you will. Make sure you marry someone who loves you and looks out for you as much as I do”

I thought that was an odd thing to say at the time because he usually found me annoying plus he always beat me in top trumps and chess and everything really.I think he'd be pleased though because I took his advice. He was as usual right.

Then just before Christmas he got a cold. He’d gone into town to buy Christmas presents. By mum’s birthday 23rd December he couldn’t even sit up in bed to play chess with me anymore. I remember seeing the board with a single spatter of his blood.

The thing that drove him crazy was not being able to play his guitar. He had taken it up and after 6 months his guitar teacher recommended that he have master-classes with Segovia.

The rest is a little hazy. Apparently this was shock. I remember them carrying him down the stairs by stretcher. I remember waking up at 4am on Christmas Day because I was sleeping in my mums bed and the time was on the alarm clock.

I remember my sister waking me up and telling me it was Christmas Day and giving me my presents in Mums room. I remember walking downstairs and seeing my mum. I remember collapsing when my mum told me she was sorry but that Michael had died.She was still wearing her coat. I remember that he bought me a paint set because I didn’t speak for 48 hours and just painted.

What I didn’t remember was seeing him for the last time in hospital. My sister told me last year. I had completely blanked it out. Apparently I’d been crying so maybe that’s why.

Anyway he’d be fifty today. It would have been fifty years like the 17 he lived. With heart and compassion and integrity and wit and wisdom. There is a tendency to deify those who die young, to imbue the years lived with unreasonable assertions of goodness.I'm not doing that.

My brother was one of the best people I ever met. Happy birthday Mike.

Beware the online commentator

2011-09-24T07:30:00.007+01:00

If you’ve got a blog or have written for an online magazine/publication you’ll be well aware of the phenomenon that is trolling. Much has been said about these ‘people’ and their nefarious pastime but far less about their younger and less famous sibling the online commentator.

I’ve written several pieces for online publication now so feel able to detail some of the categories that I’ve identified, think of it as a labour of love. Don’t be put off from commenting just look out for these identified groups it’ll do wonders for your blood pressure. Nik xx

The genuine commentator.
This is becoming an increasingly rare find in my experience. People who have read and enjoyed the piece or who don’t agree but offer balanced argument who feel motivated to go through the sign up process and who offer insights or experiences which broaden the below line debate . These people are my favourite people because they are motivated by the passion they feel for the topic at hand.
debate score =10

The Jealous commentator
There is a very high rejection rate for submission to online publications like The Guardian. Therefore some people who have pitched and been refused will target the work of those who haven’t with pointless argument about how the piece is wrong, misguided, lacking in cohesive thought or reasoning or other cheap shots.
Disappointingly frequent and easily identified as their comments are lengthy and include all the stats and facts they would have included in their own piece if only the world wasn’t deliberately conspiring to prevent them winning a pulitzer. They will often attack the genuine commentator for complimenting the author.
debate score =1

The lazy commentator
These people are interesting. What they lack in motivation they make up for in bitterness. It takes time to write or pitch a piece and a strong nerve to face rejection especially if your piece includes detailed research or is on a topic which means a great deal to you personally. The lazy commentator will also write at length and will include carefully worded barbed criticism of the author, a technique which they have honed over time to prevent their comment being moderated if too overtly abusive. They know what they mean, you know what they mean the moderator knows what they mean but the comment stays.
debate score =5

The expert commentator
These people are hilarious. They will have a pet peeve or all consuming passion. They will have been applauded at some point for being the authority on a particular issue and they will have extensive knowledge or a perception that they do which gives them the absolute human right to dictate who gets to comment on this issue. They do not deal in nuanced debate. If you are not on their mental list of approved writers they will take you down in the comments. They also fall into the Jealous commentator section however their blinkered view is much more damaging as it is completely counter –productive to the issue at hand. They remain doggedly untroubled by this notion however as their ego has been pricked and their objectivity shattered.
debate score =0

The agenda commentator
These charmers are the elite of commentators. They are well trained, fully prepared and calmly, expediently get the job done. They usually feature on issues which may have an impact on the public mood. They are in short politically driven. They can masquerade as you or I and will en arrive en masse at a topic which they deem to be “hot”. They usually target left wing sites and will thoroughly dilute balanced debate by causing side issue arguments. They also drip drip drip the sense out of a piece and any debate it prompts, with articulate pseudo complimentary but covertly patronising right wing bias. They chase off genuine commentators and quash perceived dissent.
debate score =0

The disappointed commentator
These people usually surface on pieces written about public figures. They are very driven because the object of their approbation was formerly the object of their affection. The public figure under debate may be a politician, singer, actor, or writer but they will all have one thing in common. They will have revealed something about themselves which has drawn disappointment. This revelation might be career choice or a marriage or an affair. They may be speaking honestly perhaps for the first time about their sexual orientation, addiction or lack of religious belief or a renewed faith. To some fans the disappointment is enormous. They imbue their celebrities with mythical powers. They project their own thoughts and feelings and belief systems onto the celebrity and when that public figure “fails” the unknown test, the disappointed commentator vents online.
debate score =4

The pedantic commentator
My second favourite after the genuine commentator as they are usually very sweet and equally determined.It's not what you write it's the way that you write it. You may be many things in your writing none of which matters more to the pedant than an inability to spell, punctuate or use grammar correctly.
debate score =0

The bored commentator
These people couldn’t give a toss about the issue under discussion. They don’t fall into the category of troll but do fit the time waster category. They will snipe and snark and belittle their way through a piece about disability as easily as they will rubbish valid points about relationships. They can be articulate but are usually fond of making puns at the expense of the issue discussed. They are usually stoned, bored hipsters who snipe and move on quickly.
debate score =0

Epilepsy is nothing to be scared of

2011-09-20T10:49:00.000+01:00

I was very interested in Epilepsy Actions campaigning film alerting people how to administer first aid in the event of a person with the condition having a seizure.

I was interested because of my own child’s epilepsy but it also brought to mind a story which my husband encountered at work.

The manager of a maintenance department was approached by a local youth employment scheme as they were looking to place a young guy with epilepsy. I’ve changed his name

Tim started work and was notable because he worked hard worked well and the office admin had never been as thoroughly and efficiently managed. It’s not an over statement to say he transformed the department in this area.

His seizure activity was well managed and his self-esteem was boosted which had an impact on the seizures.The manager was present for any seizures which were few and far between and these occurred with less than slight impact on anyone’s working day because everything had been re-organised by Tim so well.

The day came though when the Manager wasn’t present and Tim had a seizure. The response by the staff afterwards was nothing short of disgusting. They complained and they asserted collectively that it was inappropriate for Tim to continue to be placed. The agency were involved and the manager fought hard for Tim to stay, but the weight of staff opinion was against them.

One member of staff had cited her pregnancy as the reason why Tim had to go.

Tim’s Dad arrived to collect his son and take him home. He was philosophical. He said that this had been the longest placement Tim had ever had, that it was a shame as he’d enjoyed it but that this was always the reason why the placement ended. His experience of the system ensured that he didn’t want to “make a fuss” apparently this made finding other placements much more difficult.

It’s worth noting that this was a hospital.

Ignorance and crass bigotry to do with epilepsy ended Tim’s placement. I hope that a wider awareness of the condition and an understanding of basic first aid might help people to understand the person who lives with the condition because epilepsy doesn’t define or marginalize people, ignorance does.

A Guest Post From Martyn Sibley- Diamond Theory

2011-09-19T11:06:00.003+01:00

Thank you for the privilege of allowing me to guest blog on this site. As a fellow campaigner, it is great we can stick together, and share each others projects for disabled people.

For over 2 years I have been running my blog http://martynsibley.com/ I enjoy writing articles, tweeting, sharing videos and pictures on my life: some would say a life less ordinary, while others would not feel the need to clarify. Having a disability; always striving for new challenges and living life to the full; my articles often highlight the lighter/social side to life. Having gained a masters degree, travelled to Australia, learnt to drive a car with my hands and now living independently in London; I have crammed a lot in to my 28 years. My website mantra is inspire, inform and change.

I have always said how grateful I am for those who fought for and won independence for disabled people 20+ years ago. Moreover, I remain ever grateful to those campaigning on prevalent issues today. I have also dipped my toe in the political writing arena www.disabilitynow.org.uk/have-your-say/guest-column/putting-the-personal-into-personal-care and attended political marches http://martynsibley.com/the-professionals-video-from-the-march

For the past 2 months I have been self-employed (having worked for Scope in various capacities for 5 years) and I’m now running my own online projects for disabled people. Beyond my blog I co-launched the disability magazine http://disabilityhorizons.com/, created a series of ‘webinars’ (online seminars) http://martynsibley.com/online-learning and have other ‘new media’ plans.

The webinars are being run for my social media audience, and also in partnership with Hackney council http://www.hackney.gov.uk/disability-webinars.htm and Scope http://www.scope.org.uk/news/blogs/martyns-blog/free-disability-webinars (for their respective service users). Each series has 5 topics, which vary with each contract, and include: being a parent to a disabled child, a session for disabled teenagers, giving assistance with independent living (accessible housing, equipment, care and finance), accessing local leisure and world travel. In one hour the attendee can log on from home (or their nearest computer), absorb the 45 minute presentation I deliver and then ask specific questions in the 15 minute Q&A session. They see my screen and therefore can view powerpoint slides, websites, word documents and other useful/relevant materials. Meanwhile I explain all by talking into a microphone.

The benefits are seen by free attendance, useful information on a manner of disability related topics, personal goals to be taken away and my own theory which can be applied to all future concerns. To sign up and try one for yourself please click here http://martynsibley.com/online-learning

So, what is the theory I mentioned? It is called the Disability Diamond Theory. I created this theory because I could see the need for a disability model that focuses on an individuals’ impairment, needs, aspirations and life choices. It also encourages disabled people to aim higher, helps them along with some useful resources and explains my philosophy too. By my own admission it derives from personal experiences and is not an academic thesis. My experiences have, however, been influenced by many other disabled people and my only professional work was in the disability sector. A pretty solid foundation to write such a book I hope.

It is free to download here http://martynsibley.com/philosophy. My vision is that the Disability Diamond Theory will encourage disabled people (especially the next generation) to use the resources available (that were not around 20+ years ago) and excel in life.

I would love for you to read this ebook and feedback your views – good, bad or indifferent http://martynsibley.com/give-me-a-shout

Martyn Sibley

Twitter - @martynsibley
Website - http://martynsibley.com/
Online magazine - http://disabilityhorizons.com/

Adult Bullying

2011-09-15T14:06:00.007+01:00

It’s interesting times we live in as a nation. In times past we were apparently famous for our stoicism for our “I will not tremble or expose my vulnerability” granite implaccable unflappable "Britishness" whatever that is. We were oddly admired for our stiff upper lip..

Now we are more backstory orientated we still don’t tend to talk at length as adults about a very common problem. Bullying.

Children get bullied the “weak” get bullied.

Adults it is presumed are neither targeted nor affected by bullies.

However the reverse is true.

Adult bullies whether in work or within social groups target very specific people. Those who live honestly with integrity and those who have a perceived or actual vulnerability which can be exploited.In short pretty much anyone.

As the depressing economic downturn persists and more people lose their jobs the workplace bullying will increase.

For those bullied by their friends however there is no Human Resources department to whom you can turn.(I gather that these are not the most helpful places anyway.)

Social exclusion and isolation are very powerful weapons in a bullies arsenal. They will wield these brilliantly once the target has been identified and there are many enablers, not bullies themselves but sheep who will ensure through silence or fear of their own social exclusion, that the target is hit.

Once the "bullied" has been identified often by simply challenging the status quo (eg. by requesting for the first time that their disabled child be made a priority by friends of several decades) then the bullying will move onto the key stage.

Isolation.

Phonecalls don’t get returned or instigated. Emails and texts get ignored and group activities get arranged with your invitation not materialising or arriving at the last minute.

During the times when the rest of the group meets you are belittled, branded delusional and laughed at.

You can challenge it, you can complain about it but it’s ultimately pointless.
As wrong and as devastating as this sort of behaviour is there is nothing you can do but withdraw.

For people who have a job and social groups there this is one avenue to make other friends. For people whose children are of school age there is another opportunity.

If you have neither of those there is the beautiful wonderful internet. The fact that the right wing press believes it to be the source of all society’s woes (whilst of course enjoying the traffic through their online sites) makes it even more attractive.

The point that I’m making is this. If you’re being bullied it’s not because you are useless. It’s for the absolutely opposite reason, its because you are threatening.

Whether by virtue of intelligence, skill, natural ability or honesty you have engendered jealousy. You haven’t done so deliberately, you haven’t sought to provoke or enrage anyone. You have simply had the misfortune to invoke the displeasure of an insecure arch manipulator with extremely low self esteem.

The thing to know is that this isn’t your fault and that most decent people don’t choose bullying as a option.

The cumulative effect of bullying impacts on the target overtime. Find a good counsellor and talk to them.This isn't a weak act but a strong one. It really helps.

Most importantly it will enable you to make the decision which is the only real option.

Move on and don’t look back.

This is a fantastic and very helpful website http://www.bullyonline.org/workbully/bully.htm#Why

Austerity, Integrity and me.

2011-09-11T10:52:00.003+01:00

From my perspective Tories stab you in the front Lib dems stab you in the back and Labour?

I’m reflecting over my time as a Labour party member particularly in light of the purple Labour document which is doing the rounds at the moment. It hails allegedly as an antidote to the Blue Labour theory by Lord Glassman.

Right well, that’s much clearer then.

As a member I didn’t really care what colour the latest theory was.

I joined because when my husband lost his job we would have lost our home but for Labour policy. It gave me an abiding love of Gordon Brown who I feel was responsible for many great things which will be remembered far beyond accounts in autobiographies asserting the contrary.

As time went on I became much more worried about the fact that in an historic time of membership engagement which saw me and many others join the labour party we were ignored and disengaged quickly and thoroughly by a slew of speeches from the top brass which made Tories out of us all and in my case a local party which was resistant to “outsiders”.

I live in a Tory town. The average age of the local labour party activists would make them good candidates for a Cocoon remake. This was fine in and of itself but it felt very quickly that they didn’t want “my sort” involved.

I believe in social justice that’s why I joined, I had limited time but wanted to devote as much of it as possible to my new found enthusiasm for politics. I became CLP secretary this was a big mistake.

I wanted to change things so armed with my labour Women’s training learnt at conference I made that clear. The whispering campaigns began. “oh she’s so ambitious” they muttered “who does she think she is?” they whispered “imagine and with those children she could never be a candidate” they asserted.

All of this was relayed back to me by activists who had already faced similar whispering campaigns and treatment. They too had arrived with enthusiasm only to be faced with jealousy and stonewalls, in my opinion.

This, it transpires, is politics.

It’s not what you do it’s what you’re perceived to be overshadowing that others do, by you doing it. I have never seen anything so shortsighted in my life. Weren’t we all on the same side?

“Those children” of mine are disabled so clearly the ideals of social justice which I joined the party to promote were missing a major step here. Apparently it seems to some that when it comes to candidates either councillors or parliamentary, carers are very low down the list of local priorities.

It is in my opinion very toxic here but I maintained my assertion that this was a local problem not a national one. Then Ed gave a number of speeches where he stood shoulder to shoulder with the demolition I mean coalition government on the issue of disability benefits.

There were, he stated, deserving cases but ,he said, we all knew of many people who play the system fraudulently. He’d said this first at his conference address as new leader. He also made a Forrest Gump gag.

I walked out in tears.

I’d enjoyed conference prior to that. Met some fantastic people who are still good friends and had the opportunity to meet some great and dedicated people who with the right opportunity could do a great deal for the party and the country.

But as with my experiences locally the national party seems so embroiled in petty in fighting and divisions, so hell bent of scuppering the ideas of people who may get a little media light they lose sight of the thing they claim to hold most dear. The people they are paid to represent.

It feels that with nonsense like the squeezed middle being uppermost in Labour minds, their target demographic is the Daily Mail readership.

The savaging of the welfare system will and has led to deaths of people who the Labour party should be fighting to protect.

There are passing references made to the vulnerable by all politicians and there is always a scramble to pose with disabled people when the cameras are around but vulnerable people should be remembered and fought for in reality. Sadly they are quickly forgotten when it comes to framing policy.

There was a film at conference which I sat and watched in tears. It stated all of the fantastic achievements by Labour in 13 years of government. DDA, The framing of the Equality Act, sure start centres and NHS waiting lists. All wonderful.

But the infighting the back-biting the suppression of “perceived” threats and the parachuting of malleable candidates, is in my opinion reflected nationally. No wonder politicians who rise through the ranks and achieve a position in their party age so quickly. It must be a nightmare.

The approach to Disability benefits was the reason I left the party. Instead I campaign locally and nationally for the issues which mean the most to me. For the issues which should mean the most to everyone but seemingly don’t.

There are still Labour heroes. Amongst many Jeremy Corbyn, Tom Watson and Johanna Baxter are very decent people who stand out and work hard to make a difference.

The Tories stab you in the front the lib dems in the back and Labour?

Well regretfully it seems to me they are so busy fighting about who will lead the press conference post stabbing, they just don’t have the time.

Friendship and other misnomers.

2011-09-03T09:15:00.001+01:00

When you have a child diagnosed with a disability the world, which lets face it is constructed for the non-disabled, changes.

If like me you had already experienced bereavement and illness and disability you are aware of the true meaning of diversity. But for some parent/carers the first time they realise the harsh truth of otherness, is when the child they love so much suffers discrimination for the first time.

At the point at which your life changes irrevocably, whatever that reason may be the last thing you think about is how it will change the people around you. The over used word inclusion so well intentioned and much touted in terms of decision makers in in fact a misnomer.

As life moves on the friends you have, based upon your common ground become fewer. Fact.

In our case the girls have a hidden disability and, in the case of Emily my younger daughter, accompanying learning disabilities. If there is a disability pecking order then learning disability is at the bottom. As with ignorance of mental health it makes people nervous, which provokes stigma.

I don’t really talk at length about the girls with people face to face unless I feel I can trust the listener. I’ve seen too many eyes glaze over or faces contort into a grimace, to be unguarded in my chatter. Plus the “Oh you poor thing how do you stand it?” pavlovian response makes me angry.

That’s why I love the internet. People with limited social skills and limited social networks, have never been more ideally served than by the accessible beauty that is the internet.

There are drawbacks with vitual friendships but in virtual world if some numpty wants to yawn on about their perceived- not actual- suffering, I can shout get a grip love and move on.

Not so easy in the pub or over coffee. Apparently people don’t like that.

It’s more difficult to have real friends as they just don’t get it. People with “normal” children and “normal” lives organise group activities around their “normal” children and “normal” lives, even though a little adaptation would place no more than a crimp in their day.

There is also casual discrimination.

Campaigning against disablism as I do means that the use of “mong”, “retard”, “window licker” and “spaz” in conversations around me is something I act on. People don’t like that either.

Going with the majority flow is much more of a winner in the friends sweepstake. Plus I often cancel stuff and don’t remember birthdays and I’m knackered all the time.

Opinionated & unreliable with “difficult” children, I don’t make things easy for myself do I?

My children have a future as well as a past that will include bullying, disenfranchisement and verbal and physical abuse. I may not be brimming over with friends but if I stand by and idly watch and don’t try to change things then what kind of friend am I being to them?

I don't have to believe them if I don't want to

2011-08-21T10:14:00.001+01:00

Mum,

Another difficult night. Emmy has taken to staying up until 2am and I’m getting up at 7am to do her epilepsy meds so I’m once again in that state of perma exhaustion which I’ve come to know so well.

She was violent again last night the first appearance of it for 3 weeks which leads me now, when people ask how I am to reply “a good day for me is not getting punched in the face”

It was short lived and prompted by a big thunderstorm which brought her downstairs and under the skylights watching and unafraid. I was afraid though. I was worried and turned off the TV just like you used to and asked her to move from the window just like you used to. A tribute and a comfort which helped not at all.

You will have heard the same storm. Lying on your air filled mattress tiny and contracted.

I remembered when they were both born and the difficult nights then and you saying “just be glad of this time at least you know where they are at night”. We didn’t know then did we.

I miss you so much today that it’s making breath a little difficult to take.

I thought about those nights after Michael died when your grief shattered you. My gentle brother so like you in his temperament that when death approached him at 17 years old, on a ward full of old men he sent you for iced water.

You heard him die as you walked back. Just the two of you at the end as at the start and so you kissed him.

I still don’t know how you survived it. Was it for us your remaining children?

When your diagnosis arrived it sat side by side with Emmy’s autism. You moved from being Mum to child so gently. There was never violence.

I felt murderous though. I fought so hard to keep you. To force your neurotransmitters to keep hold of my face and my love. You said “They tell me it’s Alzheimers but I don’t have to believe them if I don’t want to.” Then a smile from a mother to her frightened child.

As a nurse you knew your journeys end.

So we walked together until you couldn’t walk anymore. You paced the corridors of the nursing home as you paced the garden at 2am in grief but then you were alone.

You let me go last of all and sometimes even now your eyes flicker, not with recognition but with a memory of recognition and it takes me back to you.

Laughing and comforting, as always.

Nicky x

This may be the most disappointing blog you'll ever read

2011-08-19T20:04:00.001+01:00

“Trash TV” is often described as a guilty pleasure. From The only way is Essex Big Brother, The X Factor and Britain’s Got Talent to The Eurovision Song Contest and Strictly Come Dancing Britain it seems is “in love with crap”.

The thing is not everyone thinks it’s crap. Not everyone chooses their Tv programmes with a litmus test of cool and uncool “bullshit” with a firm eye on the zeitgist.

Some people just watch TV.

I long ago decided that the vogue choices of the NME generation bore little relevance to me. Woe betide anyone who was caught buying the wrong fucking album. I liked Madonna from Holiday onwards not when the post modernists decided she was cool, only to become “fatally flawed” once again with a flap cap and a mockney swagger.

In my opinion there is no greater irony than a music critic over the age of 40 but hey that's just me What do I know.I love Coldplay. Their music makes me cry but the tears of those with “appalling” taste in music are I believe of little consequence certainly to those cool dudes packing up their ironic camper vans and bitterly resentful children and heading off to Glastonbury. Not judging obviously but they are usually the ones who ram their opinions down the unwilling auditory canals of the rest of us.

I’ve never liked football and I fucking hate being told what to think. As I watch the lights go out of the eyes of trendbots when I tell them that Princess Diana seemed to do a lot of good really, we share a mutual disappointment in one another.

The first time I realised that the choices we make immediately define us was when a boyfriend asked me to his graduation. I’d left drama school and was working two jobs to pay for a holiday. He said “Don’t tell any of my friends you’re working in McDonalds just tell them you’re looking for acting work”

Once I’d realised that he wasn’t joking this really, really annoyed me. When you’re 22 it is in some ways understandable to want to fit in but it’s never really appealed if I’m totally honest.

Now that I’m a week away from 45 with an eclectic family and a past littered with the disappointment of others who assumed I’m going to be as they wish me to be (just like them) I care even less.

I’m not thick skinned far from it. I hate to hurt people and I hate to be on the outside looking in because it’s often lonely but there is something akin to a neurotransmitter siren which sounds in my head if I even attempt to go with the flow. If I like it fine if I’m told to like it or even worse not to like it? Get stuffed.

Simon Cowell for example clearly is in the eyes of many apparently a veritable “satan”. Who knows he might be, but he makes programmes where people get up and sing & dance or fail dismally at both and the former makes me laugh or cry and the latter makes me cringe and hide.

It’s not bad telly it’s exploitative maybe, but I’ve auditioned for both shows and it was a laugh. It may be rigged,there are many rumours which suggest so but seriously who cares?

Who is harmed even if the dream is false-except for those who deem it to be the wrong kind of post modernistic trash because the seriously cool are “totally loving Eurovision darling”. The entertainment industry is littered with contenders who could have been someone. That’s show biz.

The selling of the notion of fame as an aspiration does trouble me, but the actual programming itself, as an entertainment does it’s job.

I suppose what I’m saying is just like what you like- leave the crowd mentality to the kids, they are neurotypically disposed to self flagellation for breaking their generational rules.

Most importantly I’m fairly sure that along with waging war and climate change and all the other things were doing to the planet sneering contempt for one another establishes us as the foulest species on the planet.

10 things not to say to a parent

2011-08-18T13:23:00.005+01:00

Ten things not to say to the parent of a learning disabled child

1) Why is she doing that?
2) Can’t you stop her doing that?
3) How do you stand her doing that?
4) You are very brave I wouldn’t be able to cope with her doing that?
5) Wow you look tired.
6) I understand exactly how you feel.
7) Yes well mine say “retard, mong, spaz and window licker” all the time you need to stop being so sensitive.
8) We’re all off for an activity that your child will find impossible and stressful are you all coming? Why not?
9) You have no idea how stressful my life is.
10) You don’t really make things any easier for yourself do you?

Ten things not to say to the parent of a disabled child

1) Well I’m sorry but they are disruptive in the classroom/theatre/cinema and we have to think of everyone else.
2) We didn’t think your child liked parties/sleepovers.
3) Oh isn’t that adorable they are so “special”.
4) Wow you look tired.
5) I understand exactly how you feel.
6) Oh they go to normal school?
7) Well your child needs to stop being so sensitive there is no bullying in this school.
8) I’m sorry your child simply does not meet our eligibility criteria.
9) I’m sorry but we simply don’t have adequate staffing levels for your child to be included in that activity.
10)You really don’t make things any easier for yourself do you?

Ten things not to say to the parent of a child with autism

1) So really its like dyslexia?
2) So what is their special talent?
3) No they’re not disabled where is the wheelchair?
4) Isn’t Rainman a wonderful film.
5) Oh all children do that you’re just being paranoid.
6) What that child needs is a damn good slap and better discipline at home.
7) Wow you look tired.
8) They didn’t have Autism in my day.
9) Do you think it was that MMR jab?
10) You really don’t make things any easier for yourself do you?

Did you hear the one about Heather Mills McCartney?

2011-08-04T12:00:00.000+01:00

Anyone who knows me is familiar with the fact that I’m a fan of Twitter. Social networks in general but Twitter in particular. I can’t get on with facebook quite as well because I’m old and need things which are understandable within 140 seconds let alone 140 characters.

There has been much written about the evils of social networks but for someone like me it’s key. Disabled people and carers like me, can often find actual social networks spectacularly diminished so the accessibility of virtual online friendships is very comforting.

Unlike face to face relationships there’s no tedious explanation required.No value judgements placed on your face or figure(unless you choose to post this type of photo) no ill informed comments on your impairment or sympathy on the “burden” of your child’s disability.

You can be as anonymous as you wish. However that can also be the problem. Yesterday a news piece surfaced about Heather Mills McCartney.

She deeply polarises opinion it seems. I don’t know her, neither do millions of others but this didn’t stop them criticising her. My problem was that apparently in these days of equality the aspect of Heather Mills which drew the fastest and foulest “jokes” was the fact that she has a prosthetic leg.

The tweets and RT’s about her disability went back and forth. I became aware of it because Sally Bercow called for a halt when she tweeted a measured plea for this to stop. I checked out the hastag timeline which quickly established Heather Mills as a trending subject. The jokes were predictable.

Ironically it transpires that when the subject of hacking is one who is loathed, the morality of this dirty business of invasion of privacy becomes less clear.

Two people were harmed by this hacking Paul McCartney and his former wife. You may feel huge love and sympathy for the former and brand the latter as a gold digger, but that doesn’t provide justification for mocking jokes about her disability.

Tweeting this lost me followers. Tweeting this drew “well she deserves it” comments from people who know my feelings on disablist abuse.

No-one deserves it. The same people were disgusted by the treatment of disabled people bullied and physically abused in the Panorama expose of the private hospital Winterbourne View.

This mocking of Heather Mills disability stems from exactly the same place as that disablism. The fact that she was married to and then divorced from a national treasure is no license to mock her disability. In doing so you sanction bullying of all disabled people. There is no good disablism and bad disablism. It’s always wrong.

But I think it also calls us to re-evaluate again our knowledge and treatment of disabled people. Heather Mills whether you love her or hate her is a good example of how we want our “crips” and “carers” in nice tidy boxes.

Brave little heroes, stoic little carers.

Any deviation from the perceived norm is far too challenging for many to manage. With little exposure by our media to positive representations of disabled people, an increasingly narrow range of disabled stories being peddled as “misery porn” we are spoonfed the myth of disabled “victim,” benefit “cheat”, or “burdened” carer.

The truth is simple. The truth as they say is out there.

Some disabled people are nice and some disabled people are nasty.Some carers are nice and some carers are nasty. Disabled people and carers are just as flawed and fucked up and lovely and generous as the rest of us.

Disabled people and carers are humans, someone should put that breaking news on Twitter

"Mad Man" or Terrorist my war on semantics.

2011-07-26T19:38:00.005+01:00

Without the slightest medical evidence to back up the claims the medical status of the Norwegian killer has been firmly established in all of our minds.He is depending or you choice of national newspaper, rolling news channel or twitter feed either a "Lunatic", "nutter", "psychopath". "madman", "deranged" or "unhinged".

For the moment these terms are as wrong as they are offensive. If it transpires that Anders Breivik does in fact have a diagnosis, then they will simply be offensive terms.

In the battle to reduce stigma and ignorance of mental health and disability, semantics are everything.

It may seem a small and pointless exercise but actually in terms of sexism, racism, Islamaphobia and homophobia, language and the abuses of it, is recognised as vitally important in reducing bigoted attitudes.

However the preponderance of many to routinely disenfranchise disabled people and those with mental illness, casually and routinely, bears much closer scrutiny.

When the culprit was found not to be as first supposed, the Islamaphobia from some ceased yet the epithets for mental health continued in abundance.

These were apparently not the actions of a sane cruel killer working to a different moral compass from our own.

There is it seems only one explanation he must be a “mad man”

Kay Burley’s incredulity in interviewing notable Criminologist Professor David Wilson when he made this point on Sky News was palpable.

She asked whether he was suggesting that it was ‘normal’ to walk around shooting teenagers?

He patiently explained again.

I campaign for disability rights. I do so as a parent of two disabled children. I ask repeatedly that hateful epithets for disability such as retard be dropped, not banned just not used by people to lazy to think of another word for foolish or embarrassing.

I value my own mental health and I’m constantly vigilant for my family’s. Life lived with a disability means some thing’s come as standard. Bullying and disenfranchisement, abuse and ignorance are metered out to vulnerable people such as my girls routinely. If you are different then for some you are a justifiable target.

The irony is that if you experience mental health problems you are far more likely to be the victim of violent crime than the perpetrator. Far too often you internalise your pain through addiction, self-harm or suicide.

So I’m asking for a small thing, before you use abusive epithets for a widely misunderstood yet widely experienced condition, think again.

In fact, by reducing mental illness to a throw away term, by describing something or someone as “mental” or a “nutter”, or a “psycho”, you are using hate speech; you are promoting a stereotypical view of mental illness in a derogatory way.

Describing a killer as a maniac, is actually far more damaging to millions those living with mental illness, coping daily to get well surrounded by pervasive negative clichés.

In using terms without a thought or recognition of the ignorance it breeds through normalising hate speech, it compounds the stigma, which prevents many getting the help they desperately need.

The innocent survivors of the horrific events in Norway who seek to rebuild their lives, and move on from this unimaginably traumatic experience, may in time face this same stigma too.

This post originally appeared on www.liberalconspiracy.org

Jonnie Marbles-The King of Comedy

2011-07-20T16:22:00.002+01:00

Jonnie Marbles you know who he is today. He’s the pie slinger. Yesterday he was also Jonnie Marbles it’s just that no-one had heard of him.

Today opinion seems divided between two camps. He’s either the upholder of justice humiliating the tyrant through comedic methods or the idiot who masked the parliamentary committee process and the wider debate about media control by eliciting sympathy for the devil.

As he’s a comedian there has also been discussion and comment from stand up’s and writers who either defend or decry from that perspective. Blogs by Richard Herring and Michael Legge and tweets by Graham Lineham in decrying the stunt on Twitter all make excellent points.

All I can think about is how fucking depressing this whole thing is.

Because now Jonnie is on his way and I'm reminded of another Rupert.

Any fans of the “King of Comedy” Martin Scorsese’s bitingly dark satire about obsessive fandom and hopeful comics will know that the end of the film see’s Rupert Pupkin kidnap his hero with a single demand for a spot on his TV show as ransom. This done Pupkin leaves jail and walks straight into his own show, with a best selling book in between.

This film can be the best indicator of how we as a society are increasingly being drip fed the unsuitable, unstable and misguided as our new millennia icons.

It seems that nothing succeeds like success and in the ratings war, the name of the game is fame.

Marbles may well be talented but sheer hard work and decades on the comedy circuit will prove no match for global transmission of his Rupert pie and Wendi slap.

Everyone knows who he is now. His twitter followers bear testament to that. You can read about his reasons as he has already written it for Comment is Free.

I’m rather afraid that for all his assertions of noble intent he is in the final analysis the ying to cat bin lady’s yang.

He states higher motives and he may be telling the truth but given that the platform he chose was one of lies, damned lies and viewers statistics the final irony maybe that, just like the witnesses in that room truth must be sacrificed on the alter of success.

For Marbles I suppose only time will tell if the end justifies the means.

A simple question

2011-07-12T15:43:00.000+01:00

Here are a series of emails between me and the offices of Daniel Kawzynski MP. I'm requesting an oral question.

I live in hope.

23rd June 2011

Dear Helen,

Thank you so much, it was lovely speaking to you as always.

My new campaign is called People not Punchlines here is the link to my blog which contains the press release.

http://nickyclark.blogspot.com/2011/06/people-not-punchlines-campaign.html

and my Guardian piece from today http://t.co/tjqzEc1

As you can see currently disabled people are not included in legislation to address the issue of Hate Speech. I was hoping that Daniel might ask an oral question of the Home Secretary(?) in order that the law be amended to offer disabled people the same protections as other people who are the target of hate crime and verbal abuse.

My campaign has the backing of Mencap.

Very Best wishes

Nicky Clark

People Not Punchlines Campaign

6th July 2011 11.43am

Hi Nicky

Our London Office have looked at the PQ and have come up with the suggestion below – the questions have to follow a format – are you happy with this.

Also, if Daniel puts in to ask an Oral question, we have to wait until his question is chosen, which could take several weeks. If he puts in a written question, we know he will get a written reply also in a few weeks.

Are you happy for this to be a written question

Kind regards

Helen

“To ask the Secretary of State for the Home Office what considerations she has given the merits of offering disabled people protection equivalent to that currently given to those targeted by hate crime or verbal abuse”

6th July 12.31pm

Dear Helen,

I would be most grateful if Daniel would consider asking an oral question. I don't mind if we have to wait a short while.

"To ask the Secretary of State for the Home Office whether she might consider the call by my constituent disability rights campaigner Nicky Clark who has launched the People not Punchlines Campaign. She is asking for an amendment to existing legislation for those targeted by hate crime or verbal abuse as currently disabled people are not included. Although protection is offered as an additional aggravating factor in terms of sentencing- the issue is not recognised in and of itself "

Hate speech is terms of disability is not recognised in line with other hate speech under either the Criminal Justice or Public order acts. Anyone from Eugenicists to BNP can technically spread hatred. I recently participated in a R5 live phone in when someone who intends to stand as London Mayoral BNP candidate phoned in and stated if she had a learning disabled child she would have drowned them at birth.

If Daniel could reference my People Not Punchlines campaign I would of course be delighted.

Thank you so much,

Nicky Clark

6th July 4.22pm

Hi Nicky

Just to let you know I have forwarded your e-mail down to Westminster as there are so many rules to asking a question. They will check to see if it needs amending in any way.

I will let you know what is happening

Kind regards

Helen

6th July 2011 4.37pm

Thank you heard campaigns and campaigners being mentioned today so thought I'd add myself. Daniel might not want to use his oral question for this but it would mean a great deal to disabled people. Shamefully labour omitted them from legislation.

Thank you again. Best nik xx

July 12th 2.47pm

Dear Nicky,

Many thanks for your email to Helen on a PQ to the Home Secretary.

Helen is away for a couple of weeks, so she’s asked if I can help you get something down in the House.

I understand that you would like Daniel to ask a question in the Chamber on your campaign to get disabled people into the legislation surrounding hate crime and verbal abuse.

With the House going into recess next week, there won’t be questions to the home office until at least mid September, perhaps not until Octobers.

With this in mind, what I would suggest and would be more than happy to do is table a written parliamentary question to the Home Office, which will encompass the thrust of your question below.

If you’re happy with this Nicky, then do please let me know and I’ll put this on the to-do list and get the question drafted for tabling as soon as possible.

Thanks Nicky, look forward to hearing from you,

Mike

12th July 3.01pm

Dear Mike,

Thank you for your email. I have been asking for this oral question for three weeks. Respectfully if my MP had submitted my question it might have been selected by now. However I suppose we'll never know.

If Daniel does not want to ask the question then please tell me.

There are only so many ways in which I can ask for an oral question and you reply "Wouldn't you rather a written question- the list for oral questions is so long" and I reply "No honestly I asked for an oral question, specifically not for a written question- can I have an oral question please" and you reply "An oral question are you sure you don't want a written question because now that we've asked you repeatedy which format you would like the question in, the list which is very long, will be delayed by recess".

I refer you to all of my previous emails.

Very best wishes,

Nicky Clark

The News of The World

2011-07-10T20:06:00.001+01:00

The news is earth shattering, many are crying as they wonder how they will fill their time and what will become of them. Friendships forged over several years and skills learned and valued, are lost probably forever. Many wonder how they will afford the things they need now that their income has been compromised.

All this they know has come about not because of their actions but because those in charge have decided that they are expendable. They are an impediment to a wider agenda a debt to be paid to ensure bigger and better things can be accomplished.

Some are frightened, all are disbelieving.

Many will spend their time at home wondering how it happened.

The service users of the Grange Day Centre the only centre for physically disabled adults in Shropshire, which is closing due to the cuts, are no match for an all powerful council hell bent on their agenda.

So on the 29^th July after 25 years the doors will close for the last time. Who weeps for them?

There is no thank you just a goodbye

Stand Up not Punch Down

2011-07-03T13:35:00.001+01:00

Humour is vital to me. My life can be challenging and the thing that stops me sinking into a sea of self-pitying nonsense is maintaining a sense of humour.

But maintaining my own sense of humour isn’t enough. Indeed sitting alone in a room laughing could precipitate a completely different chain of events.

I’m referring to the comedy produced by others.

The stresses we have can’t be changed, but the worries we live with can be lifted by laughter. I honestly feel that humour is lifeline for me. To sit and laugh like a child, allows me to temporarily return to a time when I lived responsibility free.

There is a bargain of trust that an audience enters into with stand up. You want to like them because you want to laugh. So to immerse yourself in that relaxation only to be slapped out of it by a joke, which targets disability or disabled people, makes it much, much more hurtful.

“Not funny? Find it offensive to you? Turn it off, or don’t go”. Very wise words but what if nothing prepares you for the hurt. What if that comic or stand up speaks out against homophobia or racism or the disenfranchising of other people? Couldn’t it be reasonable to assume therefore that their correct stance on discrimination extends to disability? No sadly not. According to some, mocking disabled people isn’t the same.

So this blog is a love letter really.

To those beautiful talented fearless comics who make life better. To the writers who give us books and TV shows and films- which take us from the pain to the punchline with wit and wisdom and joy; who use their gift wisely and well by punching up not down-thank you.

As part of my People Not Punchlines Campaign I contacted comedians and asked them for their thoughts about comedy and disability. I wanted to canvass the opinions of the people who know humour well.This is what they said-

Simon Donald-Comedian, writer, creator of Viz:

'Good comedy about difficult subjects can be the cleverest and funniest work. I'm proud that I work in a field where there are no limits, but good comedy must be in context. For example no-one thinks that Mel Brookes liked the Nazis, but he made us all laugh when he touched the subject so well. To simply make fun of a person because of a disability, like making fun of their colour or race, is just abuse, and should be seen as nothing more.'

Catie Wilkins-Comedian, Writer

I like the idea that comedy is about taking down the bullies. Traditionally in a carnivalesque way, the lowly, marginalized people would get to have their say and ridicule those with power: The fool is King for a day. In general this principal has followed onto the exciting and vibrant, modern comedy scene. But I think the whole thing falls apart when comedians kick down, and attack the most vulnerable members of society. It's lazy and hack to use derogatory slurs instead of punch-lines, and not in the original spirit of comedy.

Christina Martin-Writer,former stand up comic:

“It is perfectly possible to address disability through comedy. South Park’s Jimmy and Timmy being the perfect examples.
However, it’s one thing to use comedy to address disability and the issues surrounding it, and quite another to just make the disabled the butt of every joke. Particularly by just using derogatory slurs such as mong, retard and spastic - which seem to be used with impunity by stand-up comics who lack sufficient writing skills and wit -merely to get the easy laughs they crave.
A society can be judged by how it treats its most vulnerable members; the disabled are amongst the most vulnerable members of our society. By not challenging the casual bullying of the disabled and learning disabled, we demean ourselves as well as them..

If you want to be a part of this please contact me through Twitter @mrsnickyclark #standupnotpunchdown or peoplenotpunchlines@gmail.com and we can add your name to the Stand Up Not Punch Down list of supporters.

Katie Price, Mencap, C4 & Me

2011-06-30T18:12:00.000+01:00

In advance of Katie Price's documentary Standing up for Harvey, here is my blog reproduced from my website detailing my own battle with C4 and disablist humour.I'd hoped the fight I had would improve things clearly not.

After 4 months of battling to get Channel 4 and Ofcom to recognize that retard jibes on Celebrity Big Brother were offensive and that my original complaint of 31st of January should be upheld.On the 24th May 2010 Ofcom published the findings of a 3rd review panel held on 27th April.

We won.  Two words which after all the time and effort we put in should leave me glowing with happiness that dragons have been slain and common sense has triumphed.

Yet today I can’t shift the feeling, which I have returned to many times in the last four months, overwhelming sadness. I can’t stop asking questions.

Why did I have to devote 4 months of my life making Ofcom and C4 understand that disabled people have a right not to be degraded, only to have that right denied twice?

Why did Mencap have to commission a poll on the word retard and it’s abusive use and 750 people have to email their concerns and their own experiences as disabled people, targeted by the word "retard" to Ofcom appealing their decision?

Why did the Elfrida Society members have to stage a protest outside Ofcom’s offices with placards reading "the word retard is no joke"?

Why didn’t the national press care enough to cover the story?   Then as now with a couple of notable exceptions this chilling lack of interest, even from publications devoted to the issues raised, speaks volumes.  Ofcom's 3rd review system only came into being in November 2009. It is not automatically granted. There needs to be enough compelling evidence that the two prior reviews have been in some way flawed for the decision to grant a third, to be accepted.  It was gratifying to recieve a letter from Ofcom stating that my two previous(lengthy) emails had produced compelling evidence for the review to be granted.  This is only the second case that has been reviewed at the 3rd stage and the decision they reached is the first of it's kind.  This is news. Why is no-one covering it aside from reporting the Ofcom bulletin board.

The Jeremy Vine Show has my deep gratitude for devoting a considerable portion of their show last week by allowing me to tell the story and debating the issue.

My comment is free piece in The Guardian in April triggered the predictable “it’s an attempt to quash freedom of speech, it’s PC gone mad” reactions which I knew would come.  I wrote about the Ofcom battle and I also discussed humour generally and particularly the small but worrying trend of the comedy of cruelty by it's favourite son Frankie Boyle. The mocking and objectifying of disability framed around a stereotypical view of disabled people seems to be a lucrative business for him and Jimmy Carr.They are thankfully in the minority.  My piece garnered 250 replies with all but a few of them negative and made for pretty grim viewing.I didn't want to wade through them but I was asked to reply, so read them I had to. It's an uncomfortable place to be but what struck me most is how vociferously the people posting in fury made the point about freedom of speech, whilst nicely cocooned in their anonymity. Irony eh?

Ultimately my call was for a very simple thing.Equality.

Context is key. All issues should be tackled in humour and drama. There should be no taboos.What there should be is integrity. Satire and irony are the lifeblood of democracy and keep us from sinking into the mire of sanitized media, but do so with with integrity. There is a huge difference between actual irony and hate speech dressed up as irony.

Use humour with intelligence not reliance on stereotypes, which seek to cruelly belittle and only serve to further disenfranchise people.  You only have to look to Stewart Lee, Jesse Armstrong,Simon Blackwell, Ricky Gervais and Stephen Merchant to see that diverse issues can be tackled with humour. Comedy without cruelty is the key to finding the humour in diversity.

If there is a list rating diverse groups in order of importance, in order of human rights, then in my view disability is at the bottom.  Had Vinnie Jones not said that Davina McCall "walked like a retard" but had instead used a cruel epithet for race, religion or sexual orientation, then the producers would have insisted that McCall upbraid Jones and issued an apology to viewers.  Instead they allowed the comments to be followed by a mocking walk and then place the whole show,with "retard" comments intact (but adverts removed) on their Video on Demand channel. 

In case anyone doubts the wisdom of my tenacity I want to let you in on a little secret.

In the midst of the fight with C4 and Ofcom's refusals to uphold our complaints I discovered from Frankie Boyle’s Wikipedia page that he was planning a new show, with a rather unusual title.  Said show had reached the point of acquiring a transmission date which means that by the time I found out about it had already gone through several checkpoints. Channel 4 had clearly decided that it had a perfectly acceptable title.

Wikipedia being what it is I wanted to be sure of my facts before raising the issue with Channel 4. So I contacted the Comedy Unit in Glasgow.  The person I spoke to said it was really exciting and they were just waiting for the date.  

I pressed them for confirmation. They told me that the title was definite. It was going to be called "Deal with this Retard’s". I remember because they laughed.

So I contacted Channel 4 and Mencap and Louise Wallis who had set up a facebook page with over a 1000 members and everyone else who may have a vested interest in stopping this show title.  As Frank from The Elfrida Society put it so well, within a couple of days of broadcast "Deal with this retards" would be being used abusively against disabled people on the street.

 I’m very happy that eventually common sense and equality prevailed but I’m acutely aware that this isn't the end. Hopefully though it is the beginning of the end. 

People Not Punchlines Campaign

2011-06-21T14:48:00.001+01:00

I've decided to launch a new campaign. Something that I've railed against unofficially for a long time so Learning Disability Week seemed an appropriate time.

Here is the press release which gives contact details. I truly hope people will want to get involved.

More than than that, I hope people will see that hate speech, although popular is hugely damaging. Words can and do hurt and they are the first step down the road to discrimination. If we let them pass we are all to blame.

Hate speech isn't free speech.It's not upholding the values of a free society. It's denigrating a group who through an genetic incident of birth or an accident in life are then judged by some to be less worthy.

People are not less worthy through their disability, they're not a justifiable, disposable target. Make jokes be funny but people are not anyone's punchlines.

PEOPLE NOT PUNCHLINES CAMPAIGN

As a disability rights campaigner and mum to two disabled girls

I’m launching a new campaign on 23rd June as part of Learning Disability Week, to have disability hate speech recognized under law in line with current legislation and protection.

Currently as the law stands it is illegal to communicate in a manner which is threatening abusive or insulting and intended to harass alarm or distress someone on the following grounds only:

Colour, race, nationality, ethnic or national origin, religion, or sexual orientation.

Disability remains exempt from this list and therefore disabled people are routinely harassed with no right of redress under law.

The language we use everyday underpins the rise in targeted violence and abuse towards disabled people.

Professor Ian Rivers from Brunel University conducted a survey of 185 children who had bullied others. He concluded that difference is a primary motivating factor.

In gathering information for this campaign I contacted Professor Rivers and asked him for his opinion on the issues around bullying and disability.

He explained “Children with Special Educational Needs and Emotional Behavioural Difficulties are often the target of bullying and ridicule. Where there is a hierarchy, teachers for example are bound by their policy on bullying. However in the cases of unofficial hierarchy, peer on peer bullying, the problem is rarely addressed”

Recently these behaviours have transferred from the playground to the television. The comedian Frankie Boyle also finds it acceptable to use disabled people as the source material of his “jokes”, but as distressing and discrimatory as many disabled people and carers find his “humour”, we as a society allow these comments to pass unchecked.

This campaign is not an attempt to curb free speech but rather to highlight the growing trend towards the normalizing of hate speech in respect of disabled people.

David Congdon, head of campaigns and policy at learning disability charity Mencap, said:

“As an organisation we strive to change the negative attitudes towards people with a disability in our society which is why we fully support this campaign. We believe that use of offensive language contributes to a culture where harassment and bullying of people with a learning disability is all too common.

“It is estimated that as many as 9 out of 10 people with a learning disability are verbally harassed or exposed to violence due to their disability. The tragic deaths of Fiona Pilkington and Francceca Hardwick and David Askew are just two examples of where name-calling and low-level harassment was allowed to escalate into sustained abuse with fatal consequences.

“Ignorant use of language contributes to a culture where people with a disability, and their families, continue to be regularly subjected to verbal and physical abuse. It is as bad as using racist or homophobic language and this needs to be recognised.”

Fiona Pilkington who killed herself and her disabled daughter had the word “retard” used against her and her family routinely.

The gang who hounded her, literally to death would stand outside her house and yell, ”We can do whatever we want and there is nothing you can do about it.”

As a campaigner and as a mother, I’m fighting to ensure that this ceases to be true. Therefore I'm calling on MP's to amend the existing hate speech law and ensure that disabled people are rightfully included in this vital legislation.

Nicola Clark

For more information please contact Nicky Clark at peoplenotpunchlines@gmail.com

@mrsnickyclark

Caitlin Moran

2011-06-15T10:02:00.000+01:00

Here is my email to Ebury Publications. It is followed by their response. For the purposes of fairness I have added it to my original blog.

hello there so lovely to speak to you, I would be so grateful if you could forward this email.

I read with huge sadness that these disablist sentences had been included within Caitlin Moran's new book How to be a Woman.

"I am by and large boundlessly positive. I have all the joyful ebullience of a retard." No only are her words offensive to many campaigners and disabled people they are also promoting a misjudged and highly inaccurate myth. That of the notion that learning disabled people are happy.

I would urge you as her publishers to remove this section form her book and imagine if she had chosen to use a hateful epithet for race or sexual orientation or religion whether you would have allowed it's inclusion in the first place?

Retard is used abusively and routinely against all disabled people. As a self-professed feminist does Caitlin Moran not extend her sympathies towards her disabled sisters or are they simply a focus for her taunts?

A cursory glance at the surveys conducted by Mencap and Scope would bring you to their research which demonstrates that disabled people are very damaged by the use of this word. Surely anyone with an education once acquainted with these facts would choose not to use the word.

I have included the link below, which makes the point clearly.

Thank you for taking the time to read my email I really hope to hear from you soon. This isn't about whether this was offensive to me nor is it about free speech.

I doubt that those who gave their lives for the right to free speech did so, so that an entire section of the human race could be denigrated and humiliated because someone can't muster the effort to use a thesaurus.

http://www.youtube.com/user/EndtheRword

Best Wishes

Nicky Clark

Ebury Response-

Dear Nicky

Many thanks for your email and apologies for your message being caught in our
SPAM filters and taking a while to finally make it to us.

Caitlin apologies sincerely for any offence caused which was genuinely
unintentional. Having reviewed the sentence, she will now be removing it
from future reprints of How To Be a Woman as well as from the piece posted on
The Times website.

We'd like to thank you for highlighting this.

Kind regards,

School Refuser

2011-06-12T10:06:00.000+01:00

This morning I’m acquainting myself with this document. As many parents get school uniforms and school bags and homework and packed lunches sorted, I’m reading about what happens to parents when your child does not attend school in the UK.

I’ve looked for the section on disability and school refusing but oddly it doesn’t seem to be there. Shouldn’t the government website which deals with absenteeism have a least a caveat to address cases of disability?

There is one sentence which alludes to children too sick to be at school who are therefore exempted-but my child isn’t sick, she’s disabled.

This is the problem as it seems the government both local & national suffers from a certain selective hearing loss and visual impairment of it’s own, when it comes to disability.

They seem to hear but not listen and look but won’t see.

Often the incidences of school refusing by disabled children most specifically children with autism- go hand in hand with routine bullying and lack of adapted facilities. Neither of these situations are necessarily the fault of the parents or the child yet they are the focus of censureship and punitive measures.

They are both failed and held up for scrutiny and blame. They are it appears by virtue of their disability and parental responsibility the architects of their own misfortune. In this country in this age we are in many ways no further forwards in terms of understanding than we were in 1950’s.

Worse it seems that the local authority can send one of their “experts” to your house to advise you on parenting contracts and methods of getting your child to school. If that fails they can fine you and if that fails they can send you to prison.

Judgemental attitudes, ignorance, bullying and blame it’s great being disabled isn’t it?

This isn’t a dig it’s a fact. Society as a whole and many schools in particular -unless dovetailed to the specific needs of autism, are woefully failing our children on the Autistic Spectrum.

We are lucky that this doesn’t apply to us. Yet.

Currently the school are being very supportive and understanding of the fact that Emily’s autism, learning disability and epilepsy mean it’s not a case of picking her up putting her in the car and taking her to school.

We are lucky that they understand that Autism is a complex and misunderstood condition and they know too that I want Emily to access life as fully as possible.

I’m not going to force her or make her miserable. Her time left in full time education realistically means that we are counting it in months not years. Why force her to become dangerously depressed?

The irony is of course that whilst our disabled children are being enforcedly educated within a prescriptive system , the decision makers seem to see no need to educate themselves in all forms of disability.

It feels sometimes that “installing a ramp” is really all they have. Ask any wheelchair user and they would attest to the fact that they don’t always manage that effectively.

The thing I have learned about autism and the people I love with the condition above all other things is that No really does mean No.

My favourite aspect of their beautiful minds is that my girls don’t see the point of lying.

I see it as an amazing compliance on Emily’s part that she has managed 9 years of education as it is. With her senses assaulted at every turn, with the world a frankly confusing place at best and deeply terrifying at worst,

For children like my daughter their parents flat refusal to comply with “the system” taken to the limit, means prison.

In applying once again their one size fits all approach the bureaucrats have managed to make good parenting a criminal offence.

Party Time

2011-05-28T07:26:00.000+01:00

Last night was on the scale of bad nights one of the worst.

Emmy wanted to go to Sainsbury’s.She had carefully written out her list and waited for Friday- counting down the nights before she went.

She chose what she wanted to wear and had her hair washed so she had demonstrated a good level of compliance.

Everything was ok until we got to the party stand.

In our house as I mentioned before , we’re not what you could call party animals.

When you have a child with Autism, friends are not part of their picture. They are crucial, they are wanted but they’re not usually there.

The challenges of befriending someone with a learning disability or poor communication skills are huge. Aside from the lack of interaction and propensity to dominate with obsessions and interests, the sheer “weirdness” is too much for many people.

Children though accepting of learning disability and all differences when young, begin at about eight, to look for conformity. They want someone who mirrors their thoughts feelings and interests and their patience of a perpetual child amongst their peers means that they naturally move away.

Emily however likes a party and she likes people. She is entirely unaware that few people like her.

Adults will treat her with kindness and understanding up to a point, as will well brought up children of some of the people we know. However the heart choking sadness of my child filling the trolley for a party that will never come was, for some reason yesterday, unbearable.

So after the paper plates and cups and tablecloth and candles and napkins and balloons, I called time and moved things along.

This was a mistake.

Emily became angry and as we progressed through the supermarket explosive. She began punching me and shoving and pushed me over several times.

The floors are slippy and the surfaces hard and I was not winning the battle.

This was one of the worst meltdowns I’d seen with Emmy and definitely the worst that has ever happened in public.

I knew I had to phone Phil but there is no signal inside the shop so I had to get to the entrance. Deviating from the routine of the normal route caused Emily’s fear to exacerbate her rage. Now she was dangerous.

As she punched and screamed and pulled me I was acutely aware of something really horrible happening around me.

People were retreating to a safe distance, so that they could watch.

We passed members of staff much of it happening in front of the customer services desk yet no-one spoke to us. They just watched.

Why? Maybe like a car crash, maybe like a bad soap opera or a good soap opera.

When did we become so anaethetised to suffering going on around us that when let it pass unchecked?

Phil eventually arrived and he sent me outside. He carried on with Emily and I sat smoking a cigarette with some girls on a bench. I cried they chatted. They gave me light for my cigarette so they weren’t unkind, just uninvolved.

Then I heard Emily shouting and found the two of them. Phil had tried to impose restricions and Emily had reacted the same way. As I tried to calm things she gave me a shove which landed me in a line of trolleys being pushed by a member of staff. Again bizarrely to me, he said nothing just stared.

I want to be able to tell you that we gained control of the situation. That we refused Emily’s demands, that she was marched to the car, taken home and put to bed.

No. This is a child, a young woman for whom those days are a distant memory.

So we turned around and went back in.

A text book fail on our part. We rewarded the “bad behaviour”. We could have dragged her to one of our cars, struggled to get her in, then either Phil or I could have been attacked while driving and crashed the car. So we did the only thing we could.

We followed the normal route and she took us back to the party stand. Emmy filled the trolley with party bags and trinkets and wrapping paper for the party.

Like a new millenium take on Miss Haversham’s wedding breakfast our dining room table is now laid out to receive guests who will never come.

At least not willingly and as we all know nobody wants guests who would really rather be somewhere else.

Phil and I are bruised and sad and exhausted but otherwise ok. Our criteria for ok these days, is pretty low. I’ll repeat my mantra now because It’s what I believe. Our suffering as carers is as nothing to Emily’s and many millions of disabled people.

It is the torment that plagues Emily, that manifests itself so unexpectedly and now so publicly- that’s what really hurts.

Laugh it up good.

2011-04-09T21:26:00.000+01:00

Emily is 14 today. A difficult age for most but when you add Autism learning disabilities and epilepsy into the mix it muddies the waters further.

She had refused the day last year for the first time. We though it was as a result of a fit she’d had the previous Christmas due to the excitement but this year she refused again.

I decided to mark the day anyway with presents etc but not to push her with a party.

She slowly came around to the idea of looking at the presents as the day wore on and we left her to take it at her own pace. The Disney princesses mirror-making kit went well as did the Mr Tumble DVD’s and she really loved her new dresses.

So far so good. Then she decided that she wanted to go to Sainsbury’s and chose a new dress to wear. She looked nice in it. She also added her two favourites. Pink earmuffs and a high visibility vest. Unusual but it’s up to her.

We parked in the disabled bay and Emmy got out of the car. Phil unusually said “Oh shit.” From the back of the car. I asked what was wrong and he said “teenage girls”.

I understood immediately.

Teenage girls in fact teenagers in general are the group most challenged by Emily.

When she was little and in full meltdown it used to be older people who tutted and stared and made comments of the "she needs a good slap“ variety, but now they seem to have melted away. Now that Emily is tall and a young adult they seem less concerned that she is a poorly parented child and more worried that the wrong word may separate them from their handbag.

I’m sure they still seethe inwardly and think wistfully of national service but they certainly don’t vocalize it anymore.

This is now the domain of the teens.

The two in question were as always beautiful. Longhaired long limbed and groomed to within an inch of their lives. The adult with them was busy on her mobile so they were bored and moody as they slouched and waited.

Emily walked past them as always ahead of us and these beautifully coiffed heads twitched and turned to take her in.

They laughed loud and long. I walked past and stopped. Then I walked back.

I asked mini Cheryl Cole #1 why she was laughing at my daughter who was disabled.

She said “Sorry” but her friend Cheryl Cole #2 clearly more ballsy and realising they’d been rumbled countered with “She wasn’t laughing at her” Suddenly strengthened by the bullies mantra of never apologise always deny mini Cheryl Cole #1 remembered herself “No that’s right I wasn’t”

“It’s horrible to laugh at disabled people” I said to both of them “don’t ever do that again.”

I walked away. This however wasn’t the end as "Cheryl’s" mum(not sure which one) had seen the end of the confrontation.

We were collecting our trolley when she walked over. She’d had a brief conversation with her offspring which I assume, had been one sided.

“She wasn’t laughing at her” she said “She would never do anything like that ever. She’s with her friend”

“Your daughter no matter what she says after I caught her, was laughing at my daughter. I know she would do something like that because I caught doing exactly that. I know my daughter draws the eye but that doesn’t mean she deserves to be laughed at. She’s still a person”

She said.

“I’m so sorry”

Just like that. No arguments no further denials she knew what her daughter had done.

“Don’t apologise,” I said “you’ve done nothing wrong”

“No” she said “I’m really sorry”

Then she walked away.

Now here’s the thing. That woman was clearly a nice person. I hope she will go home and have a talk to her daughter about what happened. She has probably raised her child not to be a bigot, but irrespective of that the bigotry that pervades our society when it comes to difference is endemic.

It is now a routine part of our culture to laugh at others. Disablism it seems to me is the racism of the new millennium. When you have the head of Channel 4 this week standing shoulder to shoulder with Frankie Boyle who made a joke about Katie Price’s son theoretically wanting to “fuck her” and calling it satire. In these confusing days of ours there are bullies ready and waiting to follow a leader. Frankie Boyle seems to be just what they’re looking for. He may have been wanting to make a satirical point. I’ve looked hard and still can’t find one. So I’m sure that for ignorant disablists they won’t bother even looking . If it sounds like disabled bashing and looks like disabled bashing and the TV audience are laughing at it -that’s all a bigot really needs to know.

Parents can’t be everywhere but disabled people are. If that mother was unaware of what her child deemed “fair game” then it’s pretty clear that the group dynamic when left to their own devices can and will mock who ever they wish.

Disabled people are thankfully no longer institutionalised. They are able to fully engage in all areas of life and are more visible on the streets in schools and in workplaces. But their peers are being fed a diet, which dictates physical perfection. From silicone breasts to impossibly white teeth, emaciated frames to perma-tans nothing but perfect will do.

However whilst we strive for the superficial beauty -the outward veneer of perfection we seem to be doing so at the cost of our hearts and minds. In short we are celebrating and developing personalities as toxic as the botulism we inject into our wrinkled foreheads.

These kids are growing up to have kids of their own. If they already place physical perfection at the top of their wish list and recoil from those who buck the trend then the future for people like my daughter looks really, really bleak.

The Day Today

2011-03-16T09:56:00.000Z

Today I slept in for longer than I have for a while. It’s very quiet here. On Sunday after two more violent days Emily went in for Emergency respite.

The autism and learning difficulties and epilepsy have over the last few months been joined with a new factor. Aggression.

Emily has always been a gentle child. Much keener on praise than censure I’ve used many behavioural modification techniques. I call them being a mother but apparently that’s what they are.

Reward charts and praise and lots of love seem the most obvious choice to me.

When you have limited language and the world is, on it’s best day, a strange and confusing place- then punishment for transgression of social rules you don’t understand seems a cruel rule.

I believe in the rights of everyone not just those who fit a mould they had no part in creating. I believe too that as my children’s advocates then my responsibility is clear.

Yet I’m now at the cliff edge. Because the violence that inhabits our evenings and weekends here ,that has become increasingly difficult over the last few months is now dangerous.

I hadn’t effectively communicated how bad things were here. To be honest I’m not built that way. I’m not saying that this was some misguided attempt at bravery I’m just stating a fact.

When you are the target you tend to believe that you must be the problem. The catalyst for the explosion.

As these behaviours don’t manifest anywhere else then you can understand why this is the conclusion I draw.

Our home is run to the needs of Emily.I try to facilitate calm and peace. This has led to a massive restriction in our activities and behaviours in an attempt to make things right for her.

Autism manifested seemingly from nowhere. It stole my seemingly neurotypical children from me and gave us a world which offers sneering disinterest at best and bullying and blame at worst.

Social services facilitated respite. This began seven years ago and has proved a lifeline. We will not live forever and what will happen to Emily then if she has only ever known this house and her parents as carers.

Hers is a life which will always be lived to the agenda of others.

I am responsible for all of Emily’s personal care needs. I wash and dress her try to interpret her needs, wishes and hopes and manage her daily life. I don’t sleep much and haven’t since she was born. Her epilepsy resurfaced whilst she was in respite and led to a 6 minute respiratory seizure . That must also be managed.

Then the punching, chair throwing door slamming and screaming starts.

I’ve sobbed through three meetings recently the net result of which as Emily is only attacking me has been an offer of behavioural management. I’m afraid we’re beyond reward charts and stickers.

The girls have no friends and to be honest neither do we. We’re none of us here at the top of anyone’s Party list. Who can blame them eh?

Between my Mum who is dying from Alzheimer’s, Liz’s Asperger’s syndrome and Emmy’s needs- I tend not to have much common ground with a lot of the people I know.

The friends I do have I value beyond measure and if you show empathy and kindness to me or mine I will never forget you.

Tomorrow I’m entering a room where we will discuss Emily’s future. If you’re a fly on the wall you will know who I am.

I'll be the only the only one present without a budget to manage.

The woman on the pier

2011-03-12T21:24:00.000Z

Just after Emily was diagnosed with autism and learning difficulties we took a day trip to the sea side. Llandudno to be exact.

It was a beautiful day and Emily had always loved the sea so aside from the usual stop because of Liz being travel sick things had gone well.

The diagnosis was still very raw. Phil had retreated into work to help him through and I was spending every minute scanning the internet for causes, treatments, therapies and trying to dodge the usual ‘cure” sites.

We headed to the pier because of the many autism friendly attractions. Lights, sounds, repetitive machines and rides.

Emily was ok but after many many turns feeding money into the fruit machine we drew the line and the predictable meltdown happened.

She was three and the full throttle screaming kicking and rolling on the floor drew many stares and comments. One woman in particular watched rather than stared though and as I tried to comfort Emily as Phil distracted an embarrassed Lizzy. She waited.

Eventually Emily was calm enough to bring back with a packet of Quavers and we put her on a ride with her sister.

The woman walked over. I smiled and offered my usual(in those days) apology.

“Don’t worry’ she said. “it’s autism isn’t it?”. Surprised I said yes it was and explained that Emily was just diagnosed.

“I recognised it straight away” she said “Mine’s grown up now but he was the same”

I was so pleased she was the first parent I had met since the diagnosis and I felt such a surge of relief.

“It’s not easy is it “I said.

“Not very no. wait till she asks you what’s wrong with her and why she’s not like everyone else. That’s when it’s really tough. Mine pushed me down the stairs”

I didn’t know what to say. She didn’t say anything either so we just stood together in silence and watched Emily on the ride still sniffing a little from the meltdown.

I looked at Lizzy at 6 fiercely bright and independent and 5 years away from her own diagnosis of Asperger’s Syndrome.

Then the woman smiled and walked away.

Over the years I’ve thought about that woman from time to time. Mainly in those early years in terms of making sure I never treat a parent of a newly diagnosed child in an insensitive way, as it felt at the time. Mainly as Emily has grown bigger and stronger, if the day might come when the violence becomes to much to bear.

As I write this I’m nursing a shoulder still painful from being repeatedly and unexpectedly punched this afternoon. A meltdown so prolonged and frightening that we have had to access an emergency bed for the second time in a month.

We are lucky we still have respite available.

It doesn’t take away the heart punching pain I feel at being unable to reach her and take her pain away. It doesn’t lessen my fear of what this world can and does do to disabled people like Emily when vulnerability makes them easy prey.

But it offers a time to recharge our batteries and attempt to disperse a little adrenalin.

It’s not her fault it’s just another phase of the spectrum. She doesn’t want to act this way any more than we want her too. The battle that rages still within Emily’s brain, that dictates her actions is fuelled by fears of unknown cause.

It flashes so quickly now that there isn’t always a logical path to it’s genesis. No discernable trigger. When she punched me in the back this afternoon she hadn’t even seemed angry.

If she had, then standing so close to the top of the stairs as I was, I wouldn’t have turned away.

Tonight the woman on the pier is front and centre of my thinking.

For the love of Gary

2011-03-11T10:26:00.000Z

Janis Sharp the fierce and wonderful mother of Gary McKinnon demonstrates how a mother's love should be an inspiration to everyone.

Gary is facing extradition after his Asperger’s Syndrome prompted a spectacular and for the US highly embarrassing hacking into their computer systems thereby highlighting a flaw in their firewall. Janis is fighting everyday to make sure the world stays aware of the case.

He did no harm, and hurt no one except perhaps the career prospects of the person who assured everyone their system was safe

I personally would have thanked him but the American authorities have gone another way and this vulnerable, seemingly harmless man is now facing extradition to a future in maximum-security prison.

The fact the our government seem to be allowing this speaks volumes about our relationship with our bigger cousins across the pond,

Clearly criminal activity can’t be condoned however shouldn’t humanity dictate Gary should face trial in his own country? I’m sure any disability equality impact assessment would say it should.
It should also be stated that there are many in the US who disagree with their decision makers treatment of Gary and are concerned by this extreme and disproportionate response.

At the moment it feels that if the world was a school playground, the British Government is the kid holding the coat of the bully while he punches Gary in the face.

It also highlights the gaping gap in society’s knowledge of hidden disability.

Not all disabled people use a wheel chair or cane. Not all disabled people have the social skills to determine the difference between a mate and a predator.

Not all disabled people have the physical ability to show restraint when their obsessions are set to maximum. That is a major component of Asperger’s Syndrome and requires protection not punishment.

The final irony lies in the disproportionate weighting of the judicial scales.

Disabled people who are victims of crime often see their tormentors unpunished, even if that results in death, however Gary a disabled perpetrator of crime, sees the full weight of expensive legal fury unleashed.

To Gary and Janis I send my love and support. To all governments involved in this case I send a plea to apply common sense.

They could be anyone of us who are, or who love someone, with a disability.