Saturday, 28 April 2012

Compassion is a choice

Yesterday on Twitter the story broke of a man who decided to exact revenge on those he felt had failed him. In writing about it in tweets people fell into distinct groups, those who knew little and waited to know more, those who knew equally little but decided he was beneath their contempt and those who just saw it as a great opportunity to dust off their "Gazza and a fishing rod" jokes.

Compassion was a little thin on the ground. Judgemental attitudes however had to be waded through.

Stereotypically as a nation we have historically been seen as a stoic group. Our upper lip is apparently considered stiff and un-yeilding and this notion of stoicism was strengthened and embraced across the world, after the Blitz brought forward stories of communities working together for the good of the whole. 

I think sadly that this has now passed into myth. We live in a time where compassion is only viewed as an acceptable response when wrapped up into a one minute backstory of still photographs and overlaid with the opening bars of an Adele song. In essence a backstory in a talent show beats tolerance and understanding every time.

Tolerance takes committment. Understanding requires listening. The lives of others are their own business as we plod along trying to make sense of the parameters of own selfish bubble. As surely as the microwave and super-fast broadband strip away the last vestiges of patience, which we as an ever evolving species need to consider the challenges of our fellow man, it has hardened our hearts and narrowed our minds to a laser sharp point. 

When did that become Ok.

Seeing a man at the end of his coping skills yesterday caused many to think not of him but of themselves. How would they feel if he had done this to them? That was the wrong question. To me a much more relevant one along with how frightened those who were confronted by him must have been feeling was how must it feel to be him.

Consider that man led to the police car in slow motion with an accompanying soundtrack and still photo's of the life that led him there and many might have felt his pain and possibly teared up. 

This isn't of course a defence of his actions, it's asking for more than that. It's asking that we be slower to judge and more questioning of ourselves. Actions like these can be random or they can follow a clearly delineated path. 

However the skill we seem most proud of as a nation now is that we claim to have a psychic ability of knowledge. Many people knew that he was beneath their contempt. They knew he deserved no compassion and even less understanding. They knew this without the slightest doubt of their conviction. It is this assured response which needs refining in my view.

Because the time to make up our minds about other people is never.

Friday, 20 April 2012

Wishing it wasn't so is pointless

Lots of debate has been generated following Louis Theroux's new documentary Extreme Love on autism last night.

I didn't watch it. I might do eventually but for now it's not for me, because when you live the live action version of a documentary 24 hours a day it's not as fascinating or as informative as it is for other people.

This is precisely why these programmes should be made (although with the caveat that I don't approve of disabled children participating without being totally assured of  their agreement) for one very good reason because hell really is other people.

Anyone who follows me on Twitter knows that we live with severe behavioural problems which can at times become overwhelming. This needs to be communicated because thousands of people have the same experiences we do and their family, friends, colleagues, bosses etc all need to know of the challenges so that they can make allowances.

Carers along with the disabled people they love and look after, need to be understood and helped without pity or charity but with compassion and understanding. Carers often lead very isolated lives. They lead lives containing little sleep, constant battles for services and financial help, fraying levels of patience and often mental health concerns.

Carers are not saints they're people just as flawed as any cross section of society so no quarter should be given there but they do face unimaginable challenges which would test unaffected people to the limit. That's a fact. Some carers are neglectful and abusive this is also a sad truth which needs alluding to but just like poorly performing  professionals  they make up the minority.

Some carers are over protective and refuse to let their children grow up. They too need to be recognised for their over protection is smothering for their disabled child and ultimately damaging to their own health and well being.

But above all I wish carers wouldn't wish their lives and their children to be different. Ironically this difference meaning wanting their children to be the same as others. Wishing your disabled children non-disabled means that you separate the disability from the person.  Children may acquire a disability or may be so from birth but the encouragement to grieve for the person you never knew is an odd way to counsel after diagnosis. Your child is disabled deal with that. It's hard enough to cope with everyting else that you have to do without paddling around in the *what if * pool. Hypothetical yearning is pointless. Your child needs your love unfettered by this fallacy.

If you spend your time consumed with thinking of your child differently you begin to place barriers in the way of advocating for them correctly. You search for normalising *cures* which are usually expensive and ineffectual. You become intolerant to their needs which are as real as any person and you place your wants and desires front and centre of your life at a time when you really are secondary in the scheme of things. You also lose sight of the beauty of life when external yearning for superficial conformity is removed. The view is clearer if you could only see for looking.

No child arrives with a book of instructions, no relationship is without pain or risk or loss. It's simply a matter of mitigating your sorrow at not being just like all of your friends with the realisation of how happy you can be if you let yourself.

I don't have a faith to comfort me , I get punched a lot, don't sleep much and worry to an Olympic gold medal winning standard, I've also had broken bones a rapidly diminishing social network and am a virtual prisoner in my own home. Would I like some help oh yes especially as with Emily refusing school and respite for 12 months I now have the added joy of being examined and appraised by The Local Education Authority and the worry of them deciding that Emily not attending, is somehow my fault. As though I was too busy in a crack den or at the bingo to bother.

This is the way it is. Wishing it wasn't so is pointless. It truly is extreme love but that's what mothers are supposed to do isn't it?

Sunday, 8 April 2012

Ricky Gervais talks about Derek, Karl and collateral damage

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I’m not sure if there is a single epithet that hasn’t been overused about Ricky Gervais in the decade since The Office,and all that followed in it’s wake, took the self proclaimed “fat bloke from Reading” to Hollywood and maverick host of the Golden Globes.

The words genius, innovator, record breaker, award winner and more have been bandied about and his work has been discussed, debated and decried.

Last October on his return to twitter a darker epithet for Gervais was used. Bully.

Since the twitter spat, I spoke to Ricky Gervais in October 2011. The word that I’d use to describe him now, no doubt unexpectedly, is patient.

We’re not friends but since we spoke initially I’ve challenged him privately and repeatedly in a friendly way. I do it, not because he’s a bigoted bully but precisely because in my opinion, he isn’t.

What I’m trying to say is that for a man often publicly perceived as arrogant and intractable, he is politely receptive to challenge and questioning, whilst remaining resolute that above all, he wants his work to speak for itself.

After speaking to him in October, he sent me the pilot episode of Derek and asked me to tell him what I thought. I was worried that this would be the watershed of my opinion of Ricky Gervais, because I've campaigned against people “playing disabled”. 

Since he sent it to me I’ve watched it several times and each time I’ve laughed and cried. I haven’t seen cruelty, I haven’t seen Gervais playing disabled, but I have seen reality in the subject matter, having spent a lot of the last 7 years in and out of my mum’s nursing home until she died in December from Alzheimer’s.

There are already some mutterings, from people who haven’t seen the pilot, along the lines of “here we go again I suppose he’s laughing at vulnerable people”. I didn’t find that to be the case.

Instead of it being a mocking disintegration of a learning-disabled man, paraded for the amusement of comfortable unaffected people, it’s the story that really needs to be told at the moment.

It’s the story of a socially isolated, gentle, vulnerable man surrounded by other people who society wants to forget, but told with humour, heart and warmth. It’s a comedy, in my opinion, which shows the reality of a life of otherness.

With Derek Noakes the hero of the story, Ricky Gervais replaces the attributes of a person which society seemingly most values, with the attributes that ostensibly we don’t.

Derek is not bright, he’s good. He’s not sophisticated, he’s kind. He’s not beautiful, he’s compassionate.

Gervais as David Brent saw a documentary film crew as a ticket to becoming an entertainer. Gervais as Derek hopes the film crew, are from “Secret Millionaire” because he’s looking for a champion and protector for himself and his friends.

The show deals with themes of loneliness, love, vulnerability and hope, told with humour and told from the perspective of people, who as a society, we seem keener to laugh at than with.

I think that whatever criticisms are levelled at Ricky Gervais , despite how far he’s travelled from Reading, or how far up the entertainment ladder he’s climbed,  “Derek” shows us that his view from the top is of the stories that matter told with warmth, humour and truth.

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In anticipation of the pilot of “Derek” being screened on C4 in April 2012, I asked Ricky Gervais a few more questions.

1) You’ve often spoken about how offence is “taken and not given” but does criticism or controversy ever cause you to question artistic decisions?

I see offence as the collateral damage of free speech. I hate the thought of a person's ideas being modified or even hushed up because someone somewhere might not like to hear them.Outside actually breaking the law or causing someone physical harm "hurting someone’s feelings" is almost impossible to objectively quantify.
What some people might find offensive, others will not. Such is life. Offence is rarely about right and wrong but rather about feelings. Feelings are personal. Trying to have a consensus about what is objectively offensive is rather like arranging books in a library in order of merit. We'd all have a completely different order in mind. 
We can't go round not saying what we want to say in case it offends someone somewhere. It will. Some people are offended by equality. Mixed marriage. Being gay. So you're offended? So fucking what? 
Recently The New York City Dept of Education banned 50 terms from being used in tests administered to students for fear that they could offend. One of these words was "dinosaurs". 

2) Derek Noakes as a character, first surfaced in 2001, irrespective of your assertions that he isn’t learning disabled, why do you feel this belief still persists?

Well firstly there is no argument. Derek is a fictional character and is defined by his creator. Me. If I say I don't mean him to be disabled then that’s it. A fictional doctor can't come along and prove me wrong. 
He's different. But then so are a lot of people. He's not the smartest tool in the box but he's cleverer than Father Dougal, and not as different as Mr. Bean. He's based on those people you meet who are on the margins of society. Nerds, loners, under achievers.
If he had any specific and defined disability I would either get an actor with that disability to play the role or I would make sure I was an expert in that disability and the best person for the job. There are of course times when it is necessary for an able bodied actor to play a disabled role. Born on the 4th of July for example needed an actor to play both a disabled character and an able bodied character. It was naturally easier for Tom Cruise to sit in a wheelchair for half the movie than for a paraplegic to run around for half the movie. But I think it's a good rule of thumb (no offence if you don't have thumbs) to use actors with the disability of the character they are portraying. 

3) Derek is gentle and compassionate and the way you present his world is too. How important is compassion towards difference, in your worldview and in your writing?

I think compassion in creating fiction is important on two levels. Firstly, as an actor it's important to have compassion for the characters you are portraying because at some level comedy and drama relies on empathy. Secondly, and on a more personal level I like to consider the members of society that portrayal affects.  But I actually think in some ways that equality is even more important than compassion towards difference. 
Some people were offended by Life's Too Short because a character with dwarfism was an asshole. He was an asshole. But he was an asshole because of all the things he did and said. Not because of his height. Being an asshole is a staple of comedy. Are disabled performers banned from having a meaty villain role because they should always shown to be perfect? No. 
Him being an asshole was nothing to do with his disability. Some people are assholes. Some assholes are disabled. David Brent was an able bodied asshole. (Fat, with crooked teeth is not a disability.) 
Derek is not an asshole. He's better than me. He's better than most people. He's kind, loving, funny, sweet, honest, open minded, hard working and most of all resilient to everything a harsh selfish brutal world can throw at him. 

4) You’re often described as controversial and seemingly have a love/hate relationship with the press, which seems to inform the pre-publicity of some of your projects. Is this a price worth paying creatively speaking?

It doesn't affect me really. As long as they don't influence the creative process I don't really care that much. Luckily, people make up their own minds about things. As you get more and more successful you get more and more people with an opinion about you. The less anodyne and homogenized your work is, the greater the connection and reaction. I wouldn't have it any other way. I'm flattered that people care enough to either rush out and buy a ticket or a DVD, or sit at home angrily blogging about how many idiots rushed out and bought a ticket or a DVD. Vive la difference. 

5) As you know I campaign against disability hate crime. Studies have shown hate crime always begins with verbal abuse, which has risen by 70% on the streets of the UK in the last 12 months. What are your feelings on the comedy of cruelty and do you feel it can be linked?

In comedy, particularly satire, the problem comes when people mistake the subject of a joke with the actual target. This happens to me all the time, as I tend to explore contentious and taboo subjects. Everyone has their own particular taboo, of course, and as I've already said, there is no real consensus on what is acceptable. Personally, I think no harm can come from exploring taboos, and fear of them is their very propagation. I often deal with these subjects because I like to take the audience to places it hasn't gone before. Comedy is about surprise, and I think the job of a comedian is not just to make people laugh but also to make them think. I don't like gratuitous cruelty because it fails on a comedic level. I don't like racist jokes, not because they offend me but because they are based on a falsehood. Comedy is an intellectual pursuit, not an emotional one. As soon as you stray away from truth you veer into rallying and it's harder to find that funny. I'm not sure that you can ever hold "jokes" responsible for bullying. It's like holding weapons responsible for killing. As we've already discussed, some people are just assholes. 

6) Karl Pilkington gives an amazing performance as Dougie in Derek. He is famously interested in “freaks” which has led to criticism of him mocking people with facial disfigurement and impairments. How would you answer these comments? 

I can't speak for Karl obviously, but I can tell you that he hasn't got a malicious bone in his body. I have never heard him "mock" people with disfigurement, facial or otherwise, but I have heard him talk about them in a fascinated and naive way. He is rather like a 5 year old child in a supermarket who points and says "Mummy why has that man got a weird shaped head" The mother is often mortified but she knows the child wasn't being nasty. Just inquisitive. 
Karl is fascinated by difference.  But he will get on with anyone. He has no pretensions and no filter. He says what he thinks and this can sometimes come across as harsh if you don't know him. He treats everyone equally and gives everyone the respect they give him. You have to remember, this is a man who thought that Anne Frank was just avoiding paying rent. He believes that Dinosaurs coexisted with cave men, and that a seal is a cross between a fish and a dog. 

Tuesday, 3 April 2012

Lizzy love.

Dear Lizzy,

I seriously can’t believe you’re 18. This is banana bonkers.

Of everything I’ve ever done in my life by accident, you and your sister are definitely the best.

Your Dad and I were the same embarrassing pair of idiots when we found out we were going to have you, as we are now. Less wrinkled obviously and in your Dads case thinner, but keen.

I still can’t believe they let us take you home from the hospital but they did. Aside from the fact that you screamed every night for weeks, it was great. I’d never seen anything that wasn’t a crocodile open it’s mouth so wide as you did and the scream that you unleashed was amazing, but that was the only downside and to be fair you did have colic. But my God Liz you were the most beautiful creature I’d ever seen in my life and totally worth everything.

Your Dad was an electrician then and would come home and pick you up before he did anything else. He’d rest you on his shoulder and then shout because you’d grab his chest hair poking out of his shirt. He is a quiet grumpy sod, at times but has a heart full of love for you and Emmy.

You were always so busy, eating, crawling, walking, chatting. Then reading, watching TV and more chatting. Nursery was a breeze because you didn’t cling and you wanted to know and learn everything you could. Plus you were always so easy to love.

The questions you asked like what do clouds taste like and which changing rooms do transvestites use when they go swimming ,always had a point and a beautiful reasoning to them, no spite no malice and no judgments. You haven’t changed.

You were named for my Mum and you are so like her in temperament. Like her you are gentle and concerned about other people and with a slow temper which when it flares although rare is articulate and determined to be heard.

We didn’t know for the longest time ten years in fact that you have Asperger’s Syndrome. We knew before you did and didn’t know how to tell you, not because of any reason other than we didn’t know how this would affect you. We sat together one day and looked at The National Autistic Society website and you read about the condition and you just said “That’s me mum, that’s me, I do all that”. When I said yes, you said “So it isn’t my fault that they bully me then”.

It’s never been your fault my love. Never.

We’re so proud of you Lizzy. So unbelievably glad that you’re ours, so happy that you have a strength to face every day, no matter how overwhelming it can be and still amazed that the bullies you faced everyday for 4 years haven’t changed you at all, or robbed you of your gentle heart and kindness.

Whatever you do, whatever choices you make they’ll be the right ones and we’ll be here pottering around, me being bossy, your Dad being grumpy,  Emmy singing songs from Thomas the Tank Engine.

With all our love as ever.

Mum, Dad and Emily xxx

Sunday, 1 April 2012

Moaning Bibi?

Last night I read a piece that contained approximately 1400 angry words by a woman who is absolutely sure that she can tell mothers not to moan because whoever they are and whatever they are suffering they haven’t suffered as much as she has.

I did have to double check the source piece I was reading as it had the one sided viewpoint of a Daily Mail piece, but as it reserved all of it’s venom for ‘moaning mothers’ it definitely wasn’t. I’m no fan of the Daily Mail but they famously champion mothers as long as they are the “right type”. I don’t think I’m one of them.

The piece in question can be found here, I’ve seen it described as fearless and brutally honest but to me it was as lacking in empathy and furiously convinced of it’s own righteousness as any from the pen of Melanie Philips or Jan Moir. Complete with unfair Mumsnet accusations.

The meat of the piece is the devastation and pain that Bibi feels on being unable to have children. Here she has my sympathy. It described her isolation and her exclusion here too she has my sympathy and my understanding. However Bibi  sadly lost me after that because I’m about to be the thing she professes to find repellant.

I’m about to be a moaning mother.

To be honest I’ve been a publically moaning mother for about 4 years because although I don’t necessarily fit into BiBi’s world view of the typical moaning mother (or maybe I do she doesn’t specify) my children are disabled which means to the uninitiated they are the staple fodder from everything from Government policy to Frankie Boyle and his hatespeech fueled rantings, I mean jokes.

My children are about to be 15 and 18 and they have a range of disabilities and complex needs which render their lives challenging and the world harsh and unwelcoming.

I was lucky to become a mother, I know that but I wonder ,when I was picked up and thrown across a supermarket by my younger daughter which resulted in my coccyx breaking does my fertility render me obsolete from sympathy? I don’t know.

My children have encountered bullying at school and on the streets. When you have a disabled child the meeting following the first spate of bullying is probably the time in your life when you first encounter an impotent rage and all encompassing fury which stays with you forever as you try to explain to a head teacher why they should defend and protect the needs of “one” disabled child against the bullying gang of nine. Maths is usually the issue. Deal with two furious parents or eighteen? Denying the problem to two parents is much easier. The disabled child will continue to suffer of course but that’s someone else’s collateral damage.

School is shit for kids with a disability pure and simple. If they’re not being bullied by other children, teachers or their TA’s they are walking down the streets being laughed and jeered at. The education system already poorly funded and frankly lacking in adequate training beyond the installation of ramps and accessible toilets, ensures you spend many years simply fighting for your children’s rights to learn. You may like me also encounter social services as you spend nights with a child who won’t sleep, growing into an adolescent who won’t sleep and becoming an adult who won’t sleep.

When you have disabled children your marriage doesn’t always fit the sweet fantasy of mate and protector detailed in the piece. The pressures of raising a child with a disability mean that many, many relationships falter and fail. Dependence on alcohol or recreational drugs is common, exhaustion is a given, and social networks become impossible or extinct. Domestic violence also doesn’t make allowance for disability not does it exclude the children. Work becomes a fragile balance of little sleep, and regular time off through necessity. In these circumstances parents do turn to prosac and other anti-depressents which Bibi glibly and coldly in my opinion, details in the piece.

I too have remained silent as friends wax lyrical about the pressures they face. Not really a pressure not having enough money for a third holiday but I stay silent and understand the thing which Bibi’s piece lack’s in abundance. Compassion.

We are not all the same.

Also the key thing to remember is that the reality of being a parent doesn’t begin and end at the ability to carry a child. The reality of being a friend doesn’t begin and end at fertility or the birth of disabled children. I am acutely aware of how difficult other people find being around my children how scared and ignorant they are of disability, it’s infuriating and it’s wrong but it’s the way of the world.

We mustn’t live our lives no matter how difficult, surrounded by an impenetrable wall of assured pain which you cannot move through to understand the suffering of others. This compassion we are all born with can’t lie untapped just because we don’t understand the pain of others or flatly refuse to share in their joy because it’s isn’t ours or we are defined by our own suffering.

There are many reasons why women can’t have children. There are women who must suffer unimaginable pain at the unrealised ambition of motherhood. For reasons of infertility and disability, cancer, corrective rape and violation, domestic violence or the death of their much loved partner. Their pain is as valid as any and I sympathize with it equally.

When I’m not trying to campaign against hate crime against disabled people and dreading the next news piece about how a mother so broken by lack of help and support has killed herself and murdered her child, I’m also accused of just moaning. Of being humorless, right wing and a Mary Whitehouse.
Fuck ’em.

If people don’t get what I do, that’s fine. If it’s just moaning to them they are lucky, lucky people. I’m accused of missing the point and oddly of not realizing there are people starving in Africa.

Not true of course but I don’t like to always try and disabuse people of their judgments of me unless they should know better, in which case I do. It doesn’t make what I do any less worthy, just part of a prescribed league table of importance which people are fond of telling me about.

I won’t insult anyone unable to have children with the glib response that they could consider adoption.  I would recommend reading Dawn French’s beautiful letter to her adopted daughter Billie in her Book Dear Fatty as a template for a loving mother. Or read Emma Thompson’s account of the devastation she lived through in her attempts to have a second child. We all have different pain but it’s not rendered worthless just because it’s different.

I could always place my child in care. We have considered it because we’ve had to face the harshest of realities and we will continue to do so. I still know that a good day for me is one where I’m not punched in the face.

The hope for an independent life with a disabled child is the aspiration we should all work towards as parent carers with a finite lifespan. But the main thing we know is that moaning serves little purpose because we all have sorrows and woes. Again there isn’t an actual league table of one suffering which precludes any other, just a mythical one which the untroubled mind is fond of referencing.

Shit happens it’s all about how you deal with it. The trick I think is not to focus on what you don’t have but what you do. More importantly placing blame and approbation squarely at the feet of those who haven’t encountered your problems or justifiable heartbreak, is pointless. It’s no ones fault it’s just the way it is.

However our lives have been framed we have to continue to live and to endure, we have to extend our compassion empathy and love to others no matter how seemingly trivial their problems are compared to our own.

Because life lived as a list of checks and balances of our entitlement measured against others renders us all just moaners.