The "Workers 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? Today is Carers Rights Day, so it seems 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 £180,000 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 £180,000 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. Well yes except my mum was actually the responsibility of the state and I thought having children was an option, 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) let's look at the details.

According to the Workers Time Directive it 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.

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 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, and a child who would only take medicine in yogurt, the yogurt she was used to, from England, and delays and constant pending epileptic seizures through stress of a change in routine, and 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? Hmm, 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 to friends, parties dinners sleepovers trips out etc.

Aside from the behaviours which people aren’t keen on, aside for 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 lets 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. The very high levels of anxiety means soothing and calming is a constant. No awareness of danger and the tendancy 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

Restricts excessive night work. Um ok, If you know anything about Autism or Alzheimers 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 a 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, 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.

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.

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.

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)

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.