Sunday, 28 October 2012

And the winner is .....Castlebeck

This is a guest post from the brilliant Mark Neary. He's dad and fierce advocate to his son Stephen and he tweets at @Markneary1 

This morning he posted a blog in the week that saw the sentencing for those 11 abusers from Winterbourne View, who in the opinion of many received extremely light sentences for their campaign of hate crime torture against the learning disabled patients in their care.

Winterbourne View, was owned by Castlebeck and this culture of abuse  highlighted by @whistlebloco finally came to an end after the Panorama secret filming exposed the horrors contained within the walls of that private hospital. It was a shameful episode of repeated failures and it shamed those nurses paid to care for the patients.

Now read  this part from Mark's blog "And The Winner Is……..Not The Learning Disabled, That’s For Sure"

"This week saw the sentencing of the 11 workers involved in the horrific abuse at Winterbourne View. The sentences ranged from two years to community service; derisory sentences for horrible crimes. And sadly, it shows once again that the learning disabled draw a very short straw when it comes to access to justice.
What of Castlebeck, the owners of Winterbourne View? Well, not a lot actually. After the sentencing of their staff, the company issued the following statement:“Castlebeck welcomes the finalisation of the legal process concerning the wholly unacceptable and criminal behaviour witnessed at Winterbourne View.
 When those events at Winterbourne View Independent Hospital were exposed in May 2011, the board and the company’s then Chief Executive expressed their unequivocal and unreserved regret to the service users involved and their families.
They also gave a clear commitment to protect the safety and well-being of all those who use Castlebeck’s services and swift and decisive action was taken as soon as the allegations were raised almost 18 months ago”.Which I think, roughly translated means: “Ha ha ha. Phew, got out of that one. Now fuck off, we’ve got profits to count”. 
These sort of statements are so much part of our culture now, that they have become meaningless. They are written by committee and I don’t think either the author or the reader/listener understands or believes a word of them. 
If that statement doesn’t stick in the throat, what follows causes a severe nauseous attack. It was announced this week that Castlebeck are sponsoring an award at this year’s Royal College of Nursing awards. And not just any old award – they are sponsoring the learning disability nurse of the year award. I swear to God, when I read that, I thought I’d stumbled across an episode of The Thick of It. Brass neck doesn’t even come close. 
So, that was the week that was. The residents of Winterbourne View and their families will get on with healing the scars of their awful experience; the 11 staff will get on with the business of prison/community service life. And the Castlebeck managers will be dusting off their tuxedos in preparation for a gala awards ceremony"
You can read the rest of Mark's blog here the original  Royal College of Nurses statement about Winterbourse View from their website here and their forthcoming awards via The RCN publishing company here scroll down and it's there.

Yet another slap in the face for the patients of Winterbourne View but this time it's a metaphorical one

Wednesday, 24 October 2012

Intersectionality and me.

Fascinating stuff in a biog from @Stavvers made me think long and hard about privilege.

As a middle class, white woman my thoughts are, according to the rules of the concept (as I understand them), rendered obsolete but as I've never let that stop me in 46 years I'll continue.

I'm not sure where I fall on this particular spectrum. I'm white and middle class but I'm also middle aged and a carer. I've been at my heaviest adult weight 14 stone and since the birth of my first child I've been a housewife. Not through choice but through the  circumstance of having two disabled children and my mum having Alzheimers.

So to say I know something of being disenfranchised is true.

Being a carer is not the strongest position to find yourself in, being fat is tiresomely denigrated and attempting to have a voice in the media, whilst being in  your middle 40's, an age when society expects you to withdraw or get surgery is also "difficult".

Then there are the issues I raise. I write predominantly about disability. This is something I feel passionately about, but not being disabled myself is, by the "rules" of some verboten. I write also about feminist issues and atheism. All these topics have caused me to get a lot of very "interesting" venom online. But that venom is something else I'm not supposed to mention. I like irony.

My Intersectionality here is clear. I'm a woman, a feminist, a carer and 'media old'.

I'm also an atheist, pro-choice and a campaigner. The problem with having an opinion and being prepared to voice it,  isn't conducive with having a quiet life. The fact that I even reflect on that stems from being a woman. Men don't tend, in my experience, to agonise on that point to any prolonged degree.

I was fat, now I'm thin so I think this cancels out my experience of that. I'm not disabled so that cancels out my being able to comment on disability, I'm not a comedian so that cancels out my being able to comment on disability targeted comedy, and I'm a housewife so apparently that cancels out my being able to comment on feminism.

My privilege negates my voice, but surely accidents of birth and circumstances in life as a pre-determinant for attainment is something we all fight against. In my opinion it shouldn't be championed as the new truth, because it feels like censorship to me. Discouraging anyone from speaking no matter how obliquely that discouragement is, is censorship through stealth.

I've built a profile for myself online and have actively used that profile to promote others. I think that's a responsibility of any privilege no matter how small it is. I've also criticised, commented, joked, ranted, railed and campaigned. It's won me a few friends and a lot of enemies.
It's also made me some "frenemies" but they are assholes so I'll leave that there.

I'm acutely wary of any prescriptive line which calls for the silencing of any voice. There are many fights still to have in the battlegrounds of feminism and those who have fought and won, those who have publicly or privately made life a little easier, made  universal truths a little clearer to understand, should be acknowledged. That isn't to say they are exempt from criticism. That isn't to say that they agree with me or that I agree with them on all occasions.

I suppose to me, my own way is in trying to find what unites me with others. I like compassion it's my favourite thing. I like compassionate people and I really like kindness. I absorb it when I find it and stays with me.

Intersectionality as a concept is a crucial one, I just hope it stays as one marker point in a much bigger picture because objecting to anyone on the grounds of their perceived "validity" worries me.

Saturday, 20 October 2012

Wasps on the window sill

Me with Mum in 1979

Last Saturday I posted a piece with the New Statesman which talked about belief, my atheism and when extremes of belief go very wrong.

Because the piece talked about anti-choice versus pro-choice it drew the eye of some of the members of 40 days for life and there were some pretty vile reactions which targeted me personally.

I wasn't surprised but it did make me reflect on the notion of aggression, which I've found from some determined of their "truth", to be neither  passive or reasoned.

Atheists can be aggressive, so can anyone, but the notion of aggression as being entirely the domain of those who don't believe compared to the long list of aggression perpetrated by those who do, seems too obviously hypocritical to be credible yet it remains a popular notion.

There are many famous atheists, often academics who write at length about theism and the alternative in science. I'm palpably neither academic nor scientist, but that doesn't invalidate my viewpoint nor my own philosophy which I'm offering here.

Anecdotaly the notion of oppression of faith in the UK, by some Christians has been touted pretty effectively. Other faiths are held up as taking precedence and this is neither true nor acceptable. Offered too is the idea that atheists who have no agenda other than a smashing of christian values and an insistence on the debasement of the rights of Christians.

The truth is simply that if you out yourself as an atheist, the response is usually negative.

Telling people that you're an atheist is a tricky thing. In my case I grew up in a country where from my school to my national broadcaster, from birth through to death religion takes precedence and atheism is the "other".

Living in a rural town doesn't help.

When I was a child I spoke as a child, I thought as a child and I went to Sunday school, because I was a child.

Me and my friend Patricia used to head on over to a building which on reflection was probably nine tenths asbestos and we'd clutch our bibles and pray and a lady would bang out some hymns on the piano and me, Patricia, the Sunday school teacher and the piano player would sing our hearts out.

It was all good. This continued for a few years and then, when I was twelve my brother died on Christmas day and my relationship with god hit a bit of a rocky patch.

I woke up at 4am which was the exact moment that Michael died and even though I didn't know anything, I prayed that he wouldn't die. To be exact I prayed that god wouldn't let him die.

I suppose I did it because I had to do something. There were lots of adults who were doing things and there were people coming in and out of the house, and as I felt more than useless and as it was the 70's  I was also less than informed. It was an action borne out of hope and desperation of the unknown and terrifying.

Anyway either god had back to back meetings or something, so he wasn't able to answer that one, or it was nothing celestial at all, but simple human biology that caused my brothers lungs to fill with blood from his heart condition and he drowned.

I didn't speak for 48 hours after he died, the shock apparently.

Anyway that didn't kill my faith it just left me with many more questions that had less to do with the notion of blessings and much more to do with the vengeance side of god. What my brother had done to 'deserve to die' was a mystery to me, but the response was usually something about moving and mysterious and ways.

Anyway I think what it left me with was the idea that humour was a much better companion to me in tough times than fire and brimstone. It's not simply that I'd asked and yet I'd not received, it was more the idea that 'people' like Ian Brady and Myra Hindly were at that time, alive and well and my lovely brother was dead.
If this was a divine choice, a selection, then it was bizarre to me, as a child. As was the perceived comfort from people who told me that only the good die young. Which made me feel worse.

Was I 'bad' now as well as devastated because I was still alive?

Religion still played a part in my life through family. My mum believed in god and was a great example of Christianity gone right. She was quiet about her belief but totally convinced and it was a comfort to her. I respected that and kept my growing conviction of there being no god to myself. When your child dies it wounds in a way which never heals fully. I wasn't going to attempt to question her belief on this nor, would I anyone else.

 The real value of heaven as a comfort to many through bereavement is not something to be sneered at.

I got confirmed because that's what you did. I can remember two clear memories from that. The fact that the vicar had stepped in cat shit for the rehearsal and kneeling at his feet nearly made me throw up on his shoes and the fact that I felt part of something for the actual event.

I got married in church and and had my children christened and was godmother to other peoples children so y'know all good.

Then 5 years ago they told me mum was going to die. Alzheimer's is like that. It can jog along quite happily then suddenly you reach a crisis in the condition and without warning it's critical.

It's hard to put into words what my mum meant to me, but if you've ever known a person who was everything to you, you'll understand my feelings. Put simply she was the calm centre of my life. She offered support unquestioningly when times were tough. She offered laughter and humour when times were stressful and she was a gentle force for good in a world at times dominated by selfish self serving  shit bags.

She'd begun to drift away from me into the darkness of Alzheimer's and I had to make the change from daughter to mother and so when they told me she was dying I panicked.

I was the youngest in my family, the baby and even though I was a mother myself and had been mum's primary carer, the veneer of adulthood evaporates when the shit hits the fan and you revert to the place you knew. I had to find solace, I had to find meaning, I had to know why she was going to die.

I knew why obviously it was human biology again but that was a cerebral pursuit. That was my intellect and quite frankly at that moment, that could go fuck itself because my mum was dying and I was terrified just as I had been when my brother died.

So I went on a spiritual 'journey'. I didn't travel any further than the other side of town but in my head I was embarking on a journey of enlightenment. because I was being a bit of an asshole.

To say I did so in a panic is a bit of an understatement. I spoke to vicars and catholics and nuns and counsellors I scoured the internet and bawled my head off.

Anyway it led me in the end to a very lovely vicar who took the time to make an appointment for me. I pitched up in full panic and I waited for him in his sitting room pacing up and down and staring out of the window. I thought possibly that a good pray with him might put me right, even though I'd stumbled into a country pub one harvest festival and nearly fainted from the claustrophobia of unannounced religion.

Anyway...standing in the Vicar's house looking out of his window I noticed two dead wasps on the windowsill.

I don't like wasps I don't see the point. I'd been pretty badly stung going to get a cricket ball which had landed at the back of the pavilion when I was eight and so those little shits and I had unfinished business. Looking at them lying there I was struck by their place in the history of things. They had lived and then they had died and that was all there was. They had fulfilled their purpose and then they stopped existing. Why should humans expect anything more.

There they were perfect and utterly dead and they represented to me a truth and a light so compelling so unassailable, that I just knew that anything offered by a representative of god would neither change any outcomes for my mum, nor bring me a comfort from the finality of all things.

Because we're all just wasps on a window sill- it's just that I feel that wasps don't expect to be anything more than that it seems to me. They don't expect to be so valuable beyond all other species that they deserve to continue beyond life, unlike some humans.

Mum recovered and carried on her slow decline. I no longer looked for comfort because I now had something better, my own explanation which had nagged at me for the longest time. When the time came to say goodbye to her for the last time last December the comfort I derived from being an atheist served me well. I made sure she had a christian funeral in accordance with her beliefs.

We met the same vicar (with the wasps) and when he offered to say a prayer for us I declined for obvious reasons and popped out for a cigarette. Phil stayed though. Because dear reader  I hate people of faith so much, I married one. (Phil may contend that this was indeed a  revenge of the cruelest inhumanity)

Anyway a few years ago on Twitter, Ed Byrne the comic posted a link which was couched in the finest non pushy terms.I clicked on it because it was so non pushy that I was intrigued. It was a link to the BHA and when I read the words from people like lovely Claire Rayner. It just made total sense. She wrote about everything I'd felt for the longest time and there were many other stories and accounts on there which also eloquently detailed my own feelings.

Being an atheist on twitter is at times very very difficult. I took atheism out of my bio because some people of faith find it personally hurtful that I would not believe what they believe.

That's beyond weird to me, but we're all different. Some Christians are calm and some Christians are assholes some atheists are calm and some atheists are assholes, so that's that then.

The difference is atheists don't try (irrespective of what religious propagandists tell you) to shove their opinions down anyone's throat and more importantly into any woman's womb, or into the sex lives of others, or into schools, or government departments, or into our hospitals, private health clinics,or public broadcasters.

Atheists like me and millions of others who choose to live their lives to a morality of their own making, know that people are not born religious, or homophobic, or sexist, or racist, or disablist. They're made that way.

Unfortunately this blog is the direct result of some religious extremists who visited both my twitter feed and my article determined to instruct me that I'm offensive and wrong and more worryingly to insist that I have no right to express my views.

I believe in the right to choose many things, to some it seems, I only have the right to choose to believe in god.

Tuesday, 2 October 2012

Letting go and falling down

As you know if you read my blog regularly or ever, the last 3 years with Emily have been the worst for her and for us witnessing her pain.

Diagnosed at three with autism and learning disability and then at ten with epilepsy Emmy's progression into adolescence has been a real struggle because of her violence and inability to articulate what she feels.

She's in a tunnel of pain. yearning to detach and being unable to, she's targeted her rage at me and as a family we've been in crisis for more than two years.

I've been managing it and hoping for better and yearning for her pain to calm but it hasn't and last Friday it boiled over to the point where she had to access an emergency bed in respite as a priority. She left the house in her nightie and dressing gown. The system took over so that I'd be safe and she would be protected from the awful remorse she feels, by hurting me. I'm so grateful for all the amazing people Emily has working with her and for her.

The decision has now been made that the move we were looking at for Emily, into residential school at some point, is upon us. As I say at times in the last few days I'm crying so hard that I think I'm going to pass out. More than the broken coccyx last year, or the broken finger two months ago and more even, than the physical pains of labour bringing her into the world.

Last night they told her that she wasn't coming home and gave her the present I'd taken along with a card telling her how much we love her and that we'll see her when we've had a rest.

Emily knows now so I can tell you.

It's the right thing to do. It's the only thing to do, but just because we have been living a version of normal that would break many people, doesn't mean it's the easy thing to do.

We're battling to know what's happening, to make sure Emily knows and to make sure she is ok with knowing. Predictably we're also fighting during this agonising time, to get those with the power over all our lives to do what they need to do quickly. This is not a straightforward thing.

I heard the Norah Jones song featured above when Emily was seven. It was to me a beautiful representation of my beautiful girl so I thought it was fitting to post it here today as I detail the fact that I'm letting her go.

When I posted my Guardian piece about our deciding to send Emily to residential school back in August some kind soul tweeted me with the words "good luck abandoning your kid"

Meet me, look me in the eye and say that.

Or consider, even briefly how you or anyone else has the right to judge people you don't know on a false premise of presuming to know what love is.