Floating boats

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 always brings comfort. I'm sure it does- if you're religious.

As I'm an atheist, unsurprisingly, it doesn't.

My experiences in the last 3 weeks have brought me many, many assurances from well meaning people 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 kindly meant  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  invisibly tiptoeing through my house brings me anything positive at all. In fact it is through my deep lack of belief, my conviction of there being no god, that much more comfort has come- because I’m not wasting time wondering about that, 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 please   don't tell me what a relief it must be that she's died 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. It doesn't make anything easier.

My Speech for Mum

My Eulogy for my Mum. 15th December 2011

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. Her 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 itself.

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 I was 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.

*(Redacted to avoid identity theft)

No more battles

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

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.

For Danny, who everyone loved.

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 with his left hand 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 left 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 to Northern Ireland 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.

His integrity had meant that many years later, 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 from a heart attack and died.

I never met my Grandad, he died before I was born but the stories of him lived on and I'm retelling one of them here with grateful thanks, to him and to all those who died and all who survived.

Lest we forget.

A loving mother and an example of hate

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

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.

When Nicky 'met' Ricky

Photo credit-rickygervais.com

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.
Here is the "Twinterview" The 140 character limit explains the short replies.


Ricky Gervais-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


Ricky Gervais-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 ?


Ricky Gervais-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 ?


Ricky Gervais-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?

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

Ricky Gervais-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 


Ricky Gervais-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?


Ricky Gervais-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)


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


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


Ricky Gervais-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?


Ricky Gervais-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


Ricky Gervais-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?


Ricky Gervais-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?


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


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

Image-Ricky Gervis in "Derek"  photograph: C4

Ricky Gervais emailed response:
"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?

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?

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 seen as being 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

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.

Guest Blog-London Deaf Learners

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.

Out of the Loop

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.

My brother Michael

The last photo of Mike, at a wedding. Summer 1978

On the 25th December 1978 just before 4am  my brother Michael asked Mum if he could have some more iced water. The men's ward was quiet as everyone was sleeping and so as mum walked back to his bed with his drink, she heard him die. He was 17 years old.

Michael  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”

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, they were missed.

The first time I noticed anything was wrong was our last holiday before my Dad left. 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.

As Dad left just before Michael was diagnosed, 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. He didn't have to, he wanted to do 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 would have had a heart and lung transplant.

Mum was travelling to her job as a health visitor and Mike by now needed to be off school. He 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.

Michael, Mum and me. 1977

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.

Then just before Christmas he got a cold. He’d gone into town to buy Christmas presents. By Mum’s birthday on the  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 after the ambulance took him to the hospital.

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 legendary classical guitarist Segovia.

Listening to him play was one of my best and most vivid memories, especially the piece, Asturias which I've linked to.

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 mum's 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 Mum's 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 had bought me a paint set, the only present he managed to get because he'd been so exhausted. 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.