Saturday, 29 December 2012

Teaching us a lesson

  © Copyright David Wright and licensed for reuse under this Creative Commons Licence

Taunton School in Somerset has decided to include anti-defamation lessons to it’s PSHE curriculum, in an effort to dissuade children from falling into the libel traps that seem to be an occupational hazard of Social media these days. Ironically as this is an independent school it will come in for a savaging of it's own based on only that fact, such is the febrile nature of social media at times.

I think that teaching caution is an excellent idea but wonder if more adults could benefit from this too.

I’m described charitably as an avid Tweeter and have been on the receiving end of Twitter savagings in the past. However the groups in possession of a loaded keyboard, weren’t children in need of an education. These were adults and the many and various ways in which they chose to “spread the word” about me ranged from suggestions as to my being  "dangerously" mentally ill,  to uninformed opinions as to my ability as a parent. 

Not forgetting some choice views on my looks and perceived intelligence.

I’ve also witnessed some pretty inflammatory savagings of public figures dragged writhing  and protesting into a twitchfork hounding, faster than you can say pause and reflect.

How are our children meant to learn appropriate behaviours online when their doting parents seem incapable of restraint, themselves? The answer it would seem is via school.

There are many great blogs out there suggesting caution whilst online and I have to agree with all of them.  My own feeling is that one crucial rule is necessary. Before you propagate any juicy titbit which may wreck a reputation, imagine how you would feel if it was you. It's a simplistic take but worth at least considering.

A quick scan of social media networks , demonstrate that telling the world about your fabulous life and denigrating others can be the toxic waste product of the information superhighway, which comes as a staple of life now. But is it any wonder that our young are less than mindful of the preferred method of expression when they Facebook friend or twitter follow Mum only to see her pedding celebrity gossip or joining in with attacking someone for not being “on message” zeitgeist wise or joining the mob attacking Twitter’s latest “villain”.

You can find and promote any link, clip, photo or embarrassing news story online and it’s exponential speed of mass contagion via social networks makes the noro-virus look pathetically slow by comparison.  A non story transmutes to a news story in less than an hour at times, such is the breath taking speed and ravenous hunger that is rolling news.

So yes on balance I think teaching anti-defamation in schools is an excellent idea and now that modern parenting does seem to comprise increasingly of learning from, rather than instruction of, our children, perhaps more of us might benefit from this valuable lesson.

Effectively it's teaching us the crucial and mutually beneficial skill of constructive compassion.

Wednesday, 19 December 2012

Assume the position

Copyright Bob Jones and licensed for reuse under thisCreative Commons Licence

This is Twitter on any given day. From rumour to fact in ten tweets.  These are fictious but  based on my experience and conversations I've witnessed.

Add in a couple of hundred RT's, reproducing exponentially to a couple of thousand and you're there. It's Twitter Norovirus releasing and spreading opinions and bile as fact. Just like with Norovirus the end phase is crap.

@Writer Just saw a woman in the supermarket, slap her child for asking for Chocolate. foul.

@Fan RT @Writer Just Saw a woman in the supermarket slap her child for asking for Chocolate. foul. #poor ? lol

@FanFollower Sorry but @Writer has no right to comment. Note the use of the word woman,  Heard  them “joke” about women before. #sexist

@FanFollowerFollower Oh my God.  It’s also sickening to see them using their pivilege like that. Some people are really struggling. #sexist #privilege

@FanfollowerFollower hey @HighlyReactiveFirestarter have you heard about @Writer ? Tweeting sexism and attacking the poor.

@HighlyReactiveFirestarter Typical I’ve also  heard they  used the word Chocolate? I think it’s fairly obvious the real agenda here #racist

@FanofHighlyReactiveFirestarter OH my god everyone get over to the AMAZING BRILLIANT and BRAVE @HighlyReactiveFirestarter Timeline NOW

@HighlyReactiveFirestarter Please Read/ RT my new blog “Why @Writer is worse than Hitler and how I hope this gets picked up by an online paper" 

@IdiotBystander I think we all owe a huge debt to @HighlyReactiveFirestarter for their blog on @Writer exposing sexist, racist, abuse of the poor.

@Writer Thanks for all the hundreds of tweets of abuse. I can’t be bothered to explain. 

Monday, 17 December 2012

Meat is delicious... I mean murder.

Photo credit-
I've been a vegetarian now for almost a year. Yep for nearly a year I've not allowed the flesh of an animal to pass my lips. No bacon or pork or beef or anything with a face at all. Nope, Nada, nothing.
And it's all Rich Watt's bloody fault.

Last Decemberish I was on twitter and Rich posted that he'd accidentally left the gate at the side of his house open -like you do. Fortunately everything was fine but he'd been worried that the turkey might escape.

Aww I tweeted you've got a pet Turkey that's nice He tweeted back yes very nice, especially on Christmas day.

I replied 'please don't tell me you are going to eat your pet Turkey'. He replied that no he wasn't. He was however going to eat this turkey which he'd bought for Christmas.

I protested and he very reasonably asked me if I ate turkey at Christmas. I said yes, but not a running around Turkey, just a lump of generic cream coloured pinky stuff, in an aluminium dish, from the supermarket, which just happened to be called the same name as the winged, ugly, sentient creature. A vaguely pondered something-ness, which bore no relation whatsoever to an animal with feelings and faces and ...things.


Damn that OH. That oh made me think and think again and realise that I was an animal loving hypocrite. I can't kill a wasp or a spider. I was raging when a friend smacked Milly dog on the nose for sticking her snout in her crotch. I cried for three days when I had to hold Hamtaro our hampster as the vet put him down with a needle, which I have to tell you rendered him basically a furry kebab.

He had made a little scream which will stay with me forever. I still miss that little guy. He was the sweetest thing ever apart from 'forcing me' to take him to the vet when his testicles swelled to the size of walnuts and I'd thought he had cancer and the vet laughed and said "No he's just larger than your average Hampster in that department". 
There we were two middle aged women laughing about hampster testicles whilst a teenage boy on work experience, hovered in the background looking like he wanted to die.

Anyway my point is this- I was more than able to put all that to the back of my mind and chow down on a bacon sandwich before you can say PETA, because it tasted so good. I was weak and a hypocrite and I hate that.

So 1 did the only decent thing and that was to annoy my husband by announcing that on January 1st 2012 I would no longer be a meat eater.

Phil's response as with most of my "good" ideas was a muttered hmph. Followed by "I'm not bloody doing it".

"Nor me" said Liz "you're bonkers Mum"

I'm not entirely sure that it wasn't a ploy to show me the error of my resolution but last New years Eve Phil cooked every delicious type of animal corpse there is. There was also salad I think. I don't remember all the details because I was too busy eating my weight in dead animals to notice.

Anyway Auld Lang Syne came and went and I left 2011 and travelled into 2012 via a happy food induced sleep, full of the courage of my convictions. 

I did OK on balance.

Justin Moorhouse was brilliantly supportive on Twitter. A sort of vegetarian Obi one Kenobi to my wailing Chewbacca and so I began the year really well.

Then Lizzy and I went out for dinner with some friends. We'd neither of us been out anywhere for ages and we had a great time. Liz had been really nervous but had relaxed and had really enjoyed herself. It was only the next morning though when Phil asked me what I'd had to eat that I realised in all the anxiety, of going out, I'd forgotten something.

It was quite an important something if you're a vegetarian.

I'd had a steak sandwich.

It's probably significant that I'd only remembered, after I'd been asked, but as I say I'd had other things on my mind and to be fair it was at the top of the menu and it seemed a quick easy thing to remember. unlike my conviction to animal welfare apparently.

Anyway moving forward...My diet has pretty much made cheese, my dietary staple followed by bread. If I'm honest it's a combination of these two things that I'm to be found eating, on any given day. I've only been out for a meal once since steak sandwich yum-argheddon and instead of bread and cheese (in the form of a pizza) or bread and cheese (in the form of cheese on toast) or bread and cheese in the (form of vegetarian wraps) or bread and cheese (in the form of Quesadilla) I totally branched out and had the only vegetarian option on the menu. 

Bread and cheese in the form of Welsh Rarebit. Which as everyone knows is just a 'funny' way of saying cheese on toast. 

I have to tell you that the one thing I had hoped for didn't come true. Bacon and steak and chicken and beef and pork still smell absolutely amazing as they're cooking. No amount of pointing at the Sunday Roast and saying "I hope you're all enjoying your cooked animal corpse" can stop that. Mainly because Liz and Phil say "Yes delicious" but also because contrary to my best hopes it doesn't smell anything like stomach churning, cat food and dog food odours.

So as we're plodding towards my first meat free Christmas. I'm not overjoyed but I am still determined. They'll be Turkey and sausage meat stuffing and home made sausage rolls and salmon and cold cuts of meat and on and on and ....on.

I have to tell you now no matter how well intentioned, how ethically sound, or how delicious it will be, an impending nut roast is no substitute. 

Wednesday, 12 December 2012

Disability Hate Speech Survey results.

Disability Hate Speech is more than just words, Hate Crime begins with Verbal Abuse

This is the response summary from my survey.

Respondants to the survey were divided into 3 groups

Disabled person-56.7%
Paid/family carer or friend. 36.1%
Not disabled/carer/friend 11.3%

Where did you experience disability hate speech?
84% of disabled people/carers have encountered hate speech in person
11.7% online
4.3% in the media (print ,radio, television or online)

How did it make you feel?
53.1% of disabled people /carers felt angry by the hate speech
19% felt helpless
15% felt hurt
8.2% accepted disability hate speech as a part of life

Did you misunderstand?
52% of disabled people and carers  encountering disability hate speech knew it was hate speech
27% thought the speaker was unaware that it was hate speech
14.4% thought it might be hate speech
4.1% wondered if it might be a joke
1% knew it was a joke

When did this happen?
27% of disabled people/carers has experienced hate speech in the last month,
23% in the last 6 months,
18.2% in the last week,
14.1% in the last year,
12% in the last 5 years
2% more than 5 years ago.
3 % have never encountered  disability hate speech.

Who should deal with disability hate speech?
37% of disabled people and carers feel that the responsibility for dealing with hate speech lies with individuals
35% feel it’s politicians
11.5% feel it's Newspaper/News outlet editors
9.4% feel it's parents
3% feel it's Broadcasters
3% feel it's Teachers

As a disabled person what happened to you?
30.6% of disabled people have encountered hate speech suggesting that they’re not actually disabled,
27% a mocking jibe/joke
18% a mocking epithet for disability used abusively,
14% an accusation that they were claiming unjustified benefits,
4% A threat to their personal safety
5.1% other

How did you react?
28% of disabled people encountering hate speech did not respond to the abuse.
26% were too upset/shocked  to respond.
22% responded calmly
7.3% were upset but attempted to respond
7.3% attempted to explain their disability
3.7% did not attempt to explain their disability
1.2% asked the speaker to stop.

As a friend or carer were you included?
56% of carers/friends of the disabled people targeted were included/verbally abused
43% of carer/friends were not included/verbally abused.

When you saw this happening to a disabled person what did you do?
25.9% of those witnessing disability hate speech did not respond to the abuse.
25.9% responded calmly
13.8% were too upset to respond
10.3% asked them to stop.
10.3 % responded angrily.
 8.6% attempted to explain the disability
5.2 % were upset but attempted to respond

NB-This survey had 140 completions

Thursday, 6 December 2012

Disability hate Speech Survey

I'm collating responses about disability hate speech and so I've created a short survey.

If you've experienced this as a disabled person, or carer then I would be very grateful if you could complete this short survey.

Click here to take survey

Many people use disability hate speech everyday, sometimes unthinkingly, sometimes not, but as there is currently no protection under the hate speech laws as they stand, as a crime in and of itself,  then the situation will continue unless addressed.

Free speech must be defended. All I'm asking for is an amendment to the current hate speech laws to ensure that disabled people, many of whom are the most vulnerable people in society, have same rights and protections as any other targeted group.

Currently they don't.

Very best,

Nik xx

Monday, 3 December 2012

A year on.

Emily aged 4
We're going to see Emmy this week. The school are having a christmas party and they invite the parents to visit and join in.

We haven't seen her for 9 weeks.

Emmy has settled in really well and is enjoying everything just as we hoped she would. She's learning and thriving and has managed the changes required of her with stoicism and with her usual charm. We're pleased of course and I have good days and bad days but I know that this was crucial if our hope for Emmy to have any kind of independence was to be realised.

She's doing well and we're really proud of her.

It's also the very first anniversary this week, of the day my Mum died. I still find it really hard to believe those words. No matter how many times I write them or say them, they still won't quite sink in.

Me (aged18months) and Mum. Chester zoo

When I was little on a Saturday we'd walk to the paper shop and Mum would buy her Cosmopolitan Magazine and I'd buy a comic and we'd sit together on the sofa silently reading.

I'd always lie with my head resting against her chest and I'd hear her hear beating and I'd worry that it would stop and she'd be gone. I'd chatter on like children do and she'd listen and answer me and then we'd read a bit more. It was in the days before my dad left the days before my brother died and I wonder now that I'm exactly the same age how she coped when everything fell apart. 

Where did her strength come form.

Were they just a different breed these women who were born before the war. Part human, part granite. uncomplaining, stoic, calmly centred and utterly capable. It makes me embarrassed that by comparison my worries are few and far between.

She travelled to Africa by ship, at a time when a woman travelling from a small Shropshire Village to another continent may well have announced she was moving to the moon.

She was 23.

Her mother, who she adored, took her to the station and stood and waited as her train left from the small platform. Watching her go for the last time, because my grandmother died two years later.

Mum with her mum on a weekend home from nurse training early 195O's

She missed her Mum as I miss mine. 

A year on from her dying is no easier than with every year that passed, post her diagnosis of Alzheimer's. Just because you part from them slowly, doesn't mean it's easier or any kind of relief when they leave you absolutely.

It's just a blink of an eye when you compare it to the life of the Universe, but to have been loved well, leaves an indelible mark on all future relationships. It's the flipside to the damage done by those who parent badly.

I hope I'm the mother to my children, that my mother was to me and her mother was to her. I hope too that I was the daughter that my mother deserved. The debt of real love can never be repaid, because it's repayment is never sought. How can checks and balances feature in something unquantifiable.

I doubt I'll feel future anniversaries as acutely as the first because of the healing properties of the passage of time, but for now I do.

Friday, 30 November 2012

The "Working Time Directive" as applied to carers

"The Working Time Directive 2003/88/EC is a European Union Directive, which creates the right for EU workers to a minimum number of holidays each year, paid breaks, and rest of at least 11 hours in any 24 hours; restricts excessive night work; and makes a default right to work no more than 48 hours per week. It was issued as an update on earlier versions from 22 June 2000 and 23 November 1993.[1] Excessive working time being cited as a major cause of stress, depression and illness, the stated purpose of the Directive is to protect people's health and safety.” Wikipedia

Isn’t that nice. The Working Time Directive is a piece of legislation which protects workers and the human rights of those workers, to ensure they are protected in paid employment and neither exploited, nor neglected, nor disenfranchised.

So what about Carers? For Carers Rights Day I wrote this, as it's a good opportunity to measure the rights of paid and unpaid workers and see what we get. 

As a sandwich carer my approximate saving to society and the all singing, all dancing, all important tax payers, was approximately £187,000 last year. That’s one year and it was worked out calculating the hours I worked caring for my younger daughter only. 

It didn’t factor in my Mum, who had Alzheimer’s nor my older daughter who has Asperger’s syndrome.

The Workers Time Directive of course only covers those who are in paid employment so apparently, I don’t qualify. I do get paid for the work I do, of course, the government are not "heartless", I received the princely sum of £58 a week. Great, so of the £187,000 pounds I save the treasury per year, they give me back £3,016. Well, thats fair...

I chose to have these children and apparently a mother, so therefore they are all my responsibility. Yes, except my mum was actually the responsibility of the state and I thought having children was an option for everyone, not restricted to parents who produce just the “right sort” of children .

So having established I do work, as I sort of get paid, (a CEO negotiating his salary on those terms and conditions versus the hours clocked, would have the worst solicitor in the world to sign up to it) let's look at the details.

According to the Workers Time Directive it creates the right for EU workers to have a minimum number of holidays each year, paid breaks, and a rest of at least 11 hours in any 24 hours; restricts excessive night work; and makes a default right to work no more than 48 hours per week.

Minimum number of holidays. I work in the EU, we have a holiday on average once every 5 years due to financial costs and the inability for travel through airports ; or to places unknown to my younger daughter and our last one was cut from 5 days to 3, due to the challenges faced by her disability.

Just before our holiday in 2007 my mum took a very bad turn for the worst and so we thought we would have to cancel, as it was she rallied and the cost of the calls everyday to ensure her progress, was massive.

It wasn’t relaxing and it wasn’t a break. It was peppered with challenges and red tape and expensive letters to take medicines and the insurance for two children with disabilities, is vast. 

Factor in Airports who don’t understand hidden disability or a resistant girl who doesn't want to be "patted down" irrespective of whether she has triggered an alarm walking through a weird doorless doorway. A child who would only take medicine in yogurt, the yogurt she was used to, from England. Then add in delays and constant pending epileptic seizures, through stress of a change in routine and lastly include the massive anxiety to my older daughter, because of her Asperger's syndrome ....and you will understand why it takes us 5 years to recover between holidays.

So Minimum number of holidays =Fail

Paid breaks. Well if you are really, really determined and really, really lucky, that there is still any kind of provider still operating under the cuts and you qualify under the very stringent eligibility criteria, you may get some respite. 
Respite is crucial for everyone. Socially speaking when it comes to disabled children/elderly disabled relatives, they are not top of the list when it comes to visits from or invitations to friends, parties dinners, sleepovers, trips out, etc.
Aside from the behaviours which people aren’t keen on, aside from the toilet requirements which people are terrified of, apart from the inability to interpret non verbal clues or needs, or rising anxiety levels, some people are really shallow and judgmental, I mean inexperienced. 
So it's not comfortable for them to be around disability. Respite on any level is crucial but expensive.

So Paid breaks (any breaks)=Fail

Rest of at least 11 hours in any 24 hours. Ha ha ha ha ha….Oh sorry you’re serious. Well let's see. When you have to ensure medications are taken at least twice a day, if not 3 times, for three people, who also need to be fed 3 times a day and washed twice a day; when you have to ensure they have exercise and are occupied and loved and talked to and that the washing is done and the environment is clean and safe you also have to accommodate their very high levels of anxiety so you're soothing and calming words and actions are a constant requirement for them. 
No awareness of danger and the tendency of wandering off and need to be found, of turning a home into a lock down unit and ensuring risk is avoided, is key.
When you are on the phone sorting school provision and benefits and service providers and ensuring that you remember to eat and wash and think and not have a nervous breakdown and keep a marriage going etc etc etc having a rest for 11 hours….not so much.

So Rest for 11 hours in any 24 hours= Fail

My Mum Elizabeth who died from Alzheimer's disease in 2011
Restricts excessive night work. If you know anything about Autism or Alzheimer's you’ll understand that the notion of day and night, can at times be quite fluid. Sleeplessness with Autism is common, both settling and remaining asleep and even if you manage to grab two hours together the worry is constant that the person you care for has woken up and is in significant danger. Or they have woken up and put a Thomas the Tank engine video on at 3am at top volume and you have to try and resolve that, because your husband has to get up at 6am and if he's late again he'll get the sack and your other child has to go to school, where she is routinely bullied for being different. 
Then the phone rings and it’s your mum with Alzheimer's, who doesn’t realise it’s 4am not 4pm again. She’s frightened and confused and you need to explain, while she can still phone you, while she can still remember you. You have to love her through this.

Restricts excessive Night work=Fail

Makes a default right to work no more than 48 hours per week. Uh ..Huh. Read all the above again. =FAIL

Caring is so many things. It’s complex and it’s diverse and it’s a massive challenge and it’s a huge joy.

It’s done because of and with, love but it’s the most undervalued and disparaged role in society. The government rhetoric which has for a few years now targeted disabled people as liars and scroungers has also set it’s sights on carers.

How dare they do either.

Family carers need more rights, they need more support they need more recognition and they need less judgmental attitudes and sneering reductive ignorance. 
Because if we all stopped tomorrow what would any of you budget holding, pen pushers do then?

We would like rights appreciated and recognised, because we are more than an enabling provider of a loved one, for a photo opportunity in election season.

We are more than unpaid unappreciated drones. We’re people of value, who do what we do for a motivation many politicians would know nothing about.

Loving someone else much more than ourselves. 

If I seem angry in writing this, I'm sorry. I'm sorry that you're not angry and I'm sorry that apologising is the default requirement for carers. I hope it discomforts those who are unaffected. I hope it makes people think. Stoic silence is convenient but it's no promoter of good mental health. 

When it comes to carers the old adage is flipped but no less true- with no rights comes much responsibility.

29th March 2015 NB : I wrote this blog in 2012. I decided to repost yesterday, in light of the news that the coalition government were proposing more cuts to social security, this time carers allowance.
Since writing it things for us got progressively worse, then better. I reposted because, although I'm no longer in receipt of carers allowance, my experiences as a carer are common to many carers.
I reposted it in solidarity with them.  Family carers can be as young as five, or as old as eighty five. In each case, they work in support of those they love because they are needed.
I'll talk, write and tweet about caring and our experiences for as long as I'm able to. I've done this about disability for seven years online , in interviews and in articles. I wanted yesterday to just be about carers.
I'll always talk about disability and caring because it's sometimes so easy for people to forget if they're not experiencing these things and because "evil" triumphs when good people do nothing. 
Many good people have RT'd this post. Some are affected by these issues and many are not. In doing this they are showing all carers that they stand with them and that carers matter. 
Thank you all so much. Nik xx

Wednesday, 28 November 2012

Winterbourne is not the only view

Dumping grounds, abandonment, prisons, and torture cells are all highly emotive words I’ve seen used to describe treatment of learning disabled and elderly people. Those who we are supposed to love but instead who are viewed as an inconvenience to a fabulous life, which could be lived well if it wasn’t for our “irritating relatives.”

Next week the government plans to publish its final response to the Winterbourne View report, which looks into the serious abuse of learning disabled people in that private hospital. Thankfully those who waged a war of terror on the patients within its walls received sentences. They weren’t lengthy or in step with the abuse but they reflect the value society places on those with learning disability.

They’re not valued as actual people they are just someone else’s problem.

I hope they do close every treatment and assessment unit if they are all like Winterbourne View. But I hope more than anything else that The MP’s who gather and frown and make “compassionate faces” give carers and learning disabled people something decent in its place. Good residential provision and local services. Because closing them down and returning learning disabled people to their families isn’t the answer. Not for anyone except budget holders.

The perceived wisdom on caring for people with learning disabilities is that the only and best place is at home; that residential placements are all institutions and that all institutions are Winterbourne View.

Then on with our lives as we sigh and splutter over terrible things done to vulnerable people in secret. Back in our own lives, we see someone being foolish and call them a retard, but that’s ok because it’s only words right and words don’t mean anything that’s why all fascist dictators choose to spread their message through the medium of interpretive dance.

The key in all this is to remember that it’s not so called “challenging behaviour” its actual challenging behaviour. My coccyx and fingers have been broken not “so called broken” but actually broken.

Because that’s what caring for someone with challenging behaviours is like.

Not “so called” like, actually like.

The pressure being heaped on carers is immense and in all the rhetoric flying around about scroungers, and deserving and undeserving people, the rhetoric about abandonment is still being accepted and endorsed.

The pressure on carers to keep caring beyond safety, beyond reason and beyond endurance is huge. Meanwhile disabled children pass into adulthood and their need for protected independence is also being ignored through perpetuating myths that everyone who works with learning disabled people is a potential predator. This notion is as insulting and wrong as it is damaging.

Morality is the key here. It’s making a financial imperative into a moral choice. If the choice is abuse or stay at home which would anyone choose.
Very smart notion that one.

Basically because it’s much, much cheaper to reinforce carer guilt and fear of stranger danger, than it is to provide a good quality residential placement for everyone who needs one. Where’s the bloody profit margin in that eh?

If all placements were local, well maintained well inspected and socially acceptable, then everyone would benefit. Good and bad provision costs exactly the same, but making it an issue of “abandonment” is the real saving because people are emotionally blackmailed into not fighting for it.

My girl has finally found her voice and her life again. She made the transition after an extreme bout of her violence, which frightened her as much as me. She was miserable she wanted friends but friends when you have a learning disability are either few or non-existent.

She gave up respite she gave up school and she gave up hope. Staying at home all day refusing to go out. The rages where violent and terrifying and these challenging behaviours meant that she was miserable and lonely and so were we.
“I could never send my kids away or my mum” is something I’ve heard a great deal.

I did both.

Because I had to. As a sandwich carer my Mum with Alzheimer’s and both girls with Autism had needs, which clashed. Emily couldn’t cope when Grandma regressed to little girl in a woman’s body who held my hand and had to be fed. She looked like grandma and sounded like grandma but she behaved in a new way which is frightening for someone for whom routine and expected outcomes is everything. In the end they couldn’t be in the same room.

I cared for mum for 18 months 3 meals a day and 12 tablets at 12 hourly intervals. Then I brought in a care package. Mum continued at home for 5 years. She began to wander off and the final straw came when she put her electric kettle on the stove and forgot and went out for a walk. Her kitchen was on fire when she finally found her way back. There were fire engines and neighbours and quite a crowd which she fought through, running back inside to find her cat.
Alzheimers took many things from her but not her capacity to love.

The end of Alzheimer’s means two hourly turns through the night of a resistant, locked body, with no speech and recognition. With increasing violence here how safe would anyone have been? If you think that you could do that and manage everything else in your life than I applaud you. You’re obviously a much better person than I am.

So yeah I “abandoned” my mum and now I’ve done it all over again with my daughter.

Her misery and unhappiness is evident, from her thriving at school everyday and her laughter on the phone. She is brutally accessing the community for terrifying things like swimming and the Zoo and youth clubs and her horror further compounded by parties and self-esteem and friends who really value her existence for the first time in her life.

People who judge all residential placements as the same are simply compounding carer neglect. Carers endure isolation, guilt, exhaustion, stress, broken bones, loneliness and discrimination.  Mental illness is routine and breaking point is common when carer burn out is reached and no one listens.  Carers can be as young as 5 or as old as 85 and they all manage exactly the same level of stress and exhaustion.

In the space between experience and supercilious judgment no one can hear you scream.

But keep on judging and assuring everyone that every placement is Winterbourne View, ignore dedicated care workers who work everyday with compassion and integrity as you brand them all “scum”. You keep the narrative going that all parents who choose residential placements are bad parents. That will do the Councils job really well. If society judges all carers as abandoners there will be no need to try and spread already thin budgets even further will there?

Compound carer guilt by reminding them how terrifying the world is because they don’t know that already and need to be told. Make all headlines as sensational as possible and also tuck in lots of stories about carers who refuse to give up. It all helps promote a society where fear and mental breakdown gives us more murder suicides by mothers too broken to go on.

 As carers try and work out a way to manage work and home and sleep deprivation and failing or non-existent services, fracturing marriages, don’t forget to exclude them socially because that’s also really helpful.

We need residential placements but we need local residential placements. We need early intervention and we also need to remember that discrimination and bullying of disabled people and carers begins first in the language and semantics of judgement.

If you place no value of the voice of carers to tell the truth about their lives and experiences, if you rush to silence them because the reality is too expensive or to threatening or too real, then you play a part in reinforcing this failing system of ours.

Not every residential placement is Winterbourne View.

I know this but, as I’m a serial abandoner-carer no one has time to listen because they’re too busy condemning  through ignorance or fear.

Wednesday, 21 November 2012

Creativity's a bitch and then you die.

Creativity is a total bitch. 

I'm the third generation creative in my family and it pre-dates even that because when my great aunt heard that I was going to drama school she said "I've no idea where that notion has sprung from, but the “others” were awful liars so it must be from them"

The others were my maternal grandmothers side of the family. Including a great great great Uncle who moved from Shropshire to America and built a railroad, which kept getting blown up.

My grandad was creative. An engineer all his life he was also a poet and a writer who had a beautiful phrase plagerised. But I won't take a walk down that memory lane just now.

My mum was a writer. Unpublished, she kept going with submissions until Alzheimers crept into her brain and she couldn't string a sentence together, let alone continue with her writing. Yet creativity still kept trying and as I cleared her house I found many, many scraps of paper with ideas and characters.

The problem with creativity and this is where I know it's a little bitch is that it just won't leave you alone. Life for me had been all about performance and expressing myself through acting until life took over and so when I couldn't even try to perform, I wrote. Screenplays,  dramas, a book, a sitcom another screenplay, a play and on and on. 

The ideas came and went and life put them on hiatus and they'd fester but they never really went away. When I couldn't act or write I'd sing, eventually only in my car because there was no singing allowed in the house, but the car was fine.

The flip side of the bitch side of creativity is in it's release and in it’s relentless pestering. It would be nice if it could manifest in actual fact but as cruel as it is harbouring unembraced ideas constantly, it's also in itself a joy.

This blog is a cathartic space to off load, stress, fury, irritation and joy.

Ideas fill it and overwhelm it at times and instead of just bawling my tear ducts raw, I can put it here in virtual space and sometimes other people find a shared understanding. Creativity isn’t always art or even approaching art, but it’s there, good or not and suppressing a creative whisper is like trying to ignore a stone in your shoe, it’s maddening and pointless.

But it’s also life affirming in many ways

That’s the most crucial and precious point of creativity to me. Stronger than a political speech, or a sermon, creative expression cuts straight to the meaning and the purpose of being alive.

To many, many millions discovering the shared truth of existence, as baffling and terrifying, as it is joyous and engaging. Creative expression can enrage and placate, can question and intrude in a way that no other medium can. Irrespective of language, or perception creativity through sung or spoken word, dance or sculpture, animation, film, music or colour on canvass, either our own or others creativity is a companion to us all on the path of life.

Whether we acknowledge this or not is another matter, the creativity of those lucky enough to be paid to express it, is everywhere. Technology ensures that the seemingly mutually exclusive disciplines of art and science, can in fact dovetail to ensure accessibility to all and new and inconceivable ways to bring creative visions to fruition.

Mum and grandad continued to express themselves creatively,  and for mum in the early to middle stages of her Alzheimer’s, when she could no longer recall the words she loved so much, she went art therapy classes and she learnt how to paint.

Creativity waited, as it does to find a way through.

I know for me the avenues are limited if not gone entirely and the reality of realizing my own creativity is something I can’t quite face. So creativity ensures, I remain optimistic, because it ensures I have no choice.

Talent is not the net result of creativity, but rather an end in and of itself. It doesn’t have to be good it just has to be expressed.

As I said it’s a total bitch.

Thursday, 15 November 2012

Nicky Clark

Mummy loves  Emily

Emily look it's a photo of you and me. I love you so much and so does Daddy. We will see you really soon for a big hug and I'm so happy face that you are having a good time with your friends.

Here is your favourite song for happy dancing fun. Lots of love. Mummy and Daddy. (kisses)

Thursday, 8 November 2012

The silence.

So today's the day.

It's been one of the worst weeks of my life as a mother and carer. Phil has been here thankfully and  battling flu, which he was also doing last December when my mum died. Weird the coincidences in life.

On Tuesday the day before the US election,  we packed up Emily's things in preparation for her move to her new residential school.

If you've ever had to let someone go you'll understand what we were experiencing, if you have ever had to let your learning disabled child go, you'll know.

The news is full of stories of abuse. It needs to be because there are historical and contemporary atrocities committed in secret and silence that demand exposure. There are vulnerable, voiceless people ignored and treated as toys of torture.

There are many more stories, equally secret, of carers and care staff who are dedicated, compassionate and full of integrity. 

I always highlight them, and promote them along with those of fierce disabled advocates and activists trying to make the world a better place. We live in an age of bullying and of gossip, of bitching and discrediting, we don't need anymore of that. It leads to online paranoia and impotent rage fuelled attacks  on the wrong "enemy".

I'm fortunate to have had the chance of caring for my girls and my mum. Those who no nothing of disability or chronic illness are rare. Those who understand are valuable beyond measure to me. Mum died last December from Alzheimer's and I've never needed her or missed her more than this week. The people who have made that easier are precious to me beyond words.

Friendship is a difficult balance anyway. But being a carer is a uniquely isolating role. Online connections are crucial because, as with this week I've been able to dip in and out. I've been able to distract myself then go back to the task in hand.

Tuesday was particularly hard, as we packed up then transported Emmy's things. But the room was beautiful and cosy and had been painted and shelves built for all her many, many DVD's. It was a very tough day.

Afterwards I was able to find clips and links online, which made me smile and temporaril took me out of the depths of the sadness which sits beside me everyday at the moment. In the last 6 weeks since Emmy accessed emergency respite the "norms" of life like eating and sleeping have been in a fluid state.

Aside from 'repetitive strain injury of the tearducts', I'm trying to keep everything together for Phil and Lizzy and to ensure that the most important transition of Emmy's life goes well.  

Here in this blog is a place for me to put down what I'm feeling with the recognition that much of it as always, remains untold.

It's a difficult balancing act trying to let other carers know they are not alone, which is often the case, and protecting the privacy of everyone involved.

All I know is that being heartbroken doesn't always transfer articulately. Like any grief it forms a scar which is permanent and which seems to the outside to have healed. I always thing of carers as icebergs. Only one tenth of what we feel is visible. The rest is hidden because it has to be.

Carers aren't valued, sadly. They are needed by the government and society and they are warily pitied at best, but they're not valued. When you live this you understand. 

Working 24 hours a day for love is just expected.

Emmy begins her new chapter of life today. A protected independence which she needs and which will bring her the life skills for her future. We fought so hard to get her in and we are so lucky that this wonderful school is on our doorstep. Not every disabled person can achieve independence. Not every disabled person can access mainstream education. 

Both of my girls were included for a while and in both cases the placements broke down because of bullying and ignorance. That doesn't mean that inclusion is wrong far from it, it's beautiful when it works. 

It just means that there needs to be a much better understanding that, as all children are individuals, education needs to be tailored to the needs of every child with a disability not a determined consensus, which demands one experience dominates debate; and which sadly at times can be as ignorant of learning disability as anyone else.

We must try harder to make sure every voice is heard or we become, as a movement, that which we most despise and fight against.

Many carer parents spend 24 hours a day 7 days a week interpreting and facilitating and advocating for those they love. That's what we're supposed to do, we are therefore experts, on our own experience. I never presume to know or speak for anyone else on this matter, only to support and recognise the validity of all voices. 

My experience as a carer was made easier from the battles fought and won by other carers. The experiences of my children, in a world unequipped to fully included disability, underpins my passion and determination to make things better. The fight for Equality is a relay, and we take and pass on the baton as we go. 

Coshing others with that baton is counterproductive, but common.  There are no invalid opinions, there are only participants in a struggle like this. Every voice adds to the chorus and must continue to be heard or oppression has found it's champion, from within.

Caring for 18 years has been both heartbreaking and joyful. It fired in me a passion for equality that refuses to be extinguished by ignorance, intolerance and bigotry. It's gained me broken bones, a panic disorder, an eating disorder, stress, social isolation, loneliness and exhaustion, verbal abuse and bullying. I gained and lost 5 stone, and my peace of mind. I've battled schools, service providers, councillors, local authority employees, politicians, people in public life. 

I fought to support people I love to distraction as they live through, mental breakdown, autism, alzheimers, stroke, ADD, epilepsy, a heart condition, terminal cancer, terminal heart condition, depression, self harm and all encompassing anxiety. 

Emmy takes another step down the road to independence today and I have to let her go to or I'd be failing as her advocate.When you love someone, it goes with the territory.

More than a job or a vocation, more than being a casual bystander, or helper, more than being a mother, or a wife or a daughter or a sister of a friend, it's been my privilege.