Tag Archives: creativity

Smell the coffee, make a difference

If you click the picture a charming video plays. Please take a couple of minutes to watch. I think this makes an effective point, and one with which I agree. These days I make sure to spend time smelling the coffee, so to speak. For years I rushed, head down, trying to do good stuff. When my parents died I realised how much I had missed and how much I had made other people miss in my hurry to be good. In my hurry to be good I had been, perhaps, less effective. Now I take time to sit on my front steps and watch the birds in the sky and listen to their songs; I watch people as they hurry by, perhaps missing things too; I watch the clouds and wonder how to paint them properly and then go and try; I smell the earth. I still make a difference sometimes, and still try to be good: I work doing things I believe in with people I admire and respect, but I don’t do it exclusively any more. I also choose words for stories, colours for paintings, actually hear the music I am playing. My life is the better for it and I think I make a better difference now. Working smarter not harder is a cliche, but it is a cliche because it makes sense. I just wanted to share the point…If you have some interesting work, let me know. I am your woman.

 

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I write therefore I am…….

 

I sit in front of a nude page, stark and scary with no place to hide. I realise I have nothing to say but I type anyway, words falling like snowflakes

Down

To

The

 

Bottom

 

 

Of the

Page

 

Where They

 

 

Form

SludgeAndSedimentAndCongealDirtily

 

 

 

 

 

 

Re Blog courtesy of Heavy Load – check out the website too

HOW TO CHANGE THE WORLD

How to change the world

Some big news – Jerry Rothwell and Al Morrow, the director and producer of ‘Heavy Load’ the movie have got a new documentary coming out; ‘How to change the world’ opens on 9th Sep.

Jerry’s a master at telling human stories and if you’ve never seen one of his movies then I suggest you check them out. Through his films he manages to create amazing insights in to different human stories. After all he managed to follow Heavy Load around for 2 ½ years and somehow crafted a coherent story from our crazy and often incoherent way of carrying on.

4) Movie poster

His latest film ‘How to change the world’ tells the story of the founders of Greenpeace and on the opening night he’s also got Vivienne Westwood on the panel for the Q&A – looking forward to that.

Jerry came in to our lives by chance, he’d been commissioned by the Cambridge User Parliament to make a film about disability rights and advocacy (‘Real Power’) and it was felt that whilst this was an obviously worthwhile subject it could also be seen as a little dry and needed an extra element to lighten the mood – cue Heavy Load! Through that experience we formed a friendship with Jerry and he decided to make a feature documentary about our world – something that is still find hard to believe actually happened.

“FILM OF THE WEEK” – MARK KERMODE, BBC 5 LIVE

Meeting Jerry totally changed the worlds of everyone in Heavy Load and we went from playing social care garden parties and day centres to Glastonbury and Wychwood Festivals, New York City, various European cities and wrote the theme tune for Channel 4’s Cast Offs drama series.

3) Burnstock

On top of that our movie was premiered at SXSW, Texas and appeared at various international film festivals and was broadcast on the BBC. It also got screened on Finnish TV and I have no idea whether it had any role to play in the Pertti Kurikan Nimipäivät story, but they formed that same year (2009) and have gone on to do unbelievably brilliant things. Nearer to home we do know we inspired bands like Zombie Crash (who toured with Pertti Kurikan Nimipäivät in 2013) and with thanks to organisations like Carousel and Constant Flux there’s an learning disabled amazing music scene in our home city, Brighton and Hove.

PROJECT FART

During the filming Jerry phoned me one day and said it could be worth considering creating some sort of organisation taking inspiration from the release of the movie ‘Children of Agape, we are together’ which created a foundation to further the work of the orphanage featured in it. We realised the Heavy Load movie would offer us a great platform for something but we’d not worked out quite what that might be – for some months the idea lived in our heads under the code name ‘Project Fart’.

Michael straightI’ve told the story before about that lightbulb moment when we decided to launch the Stay Up Late campaign, that moment when Michael (our drummer) was told to drink up by his support worker because it was time to go home. He disagreed, he still had half a pint in his glass and was in the middle of a conversation. We launched Stay Up Late later that year with several hundred leaflets and a banner at one of Carousel’s Blue Camel Club nights. We had no particular plan other than to raise awareness of the issue of people in receipt of so called ‘person centered support’ not being a able to make chaoices about simple things like what time they went to bed and how they spent their evenings.

Jerry’s movie gave us the unique position of being able to get our message out to many thousands of people all sharing our frustrations and we’ve always adopted the approach of being free and easy with our logo, figuring that it makes sense for as many people to be doing things in the name of Stay Up Late as possible. That approach has enabled us to punch way above our weight, giving the impression that we’re a much bigger organisation than we are, and in fact it was only in 2013 that we employed our first ever paid worker. The approach of being free and easy with our logo hasn’t always worked with a small number of situations backfiring on us where other organisations have claimed our work for their own, and not really worked with us in the way we’d hoped, but it’s been risk worth taking and has largely paid off I think. (I’ll probably blog about this issue in a bit more detail in the future).

Our friends from C-Change in Glasgow

Our first employee was of course Madeline who’s now joined by Kate and Holly who make up the team running our Gig Buddies project across Sussex. To think we’d have an office with 3 staff supporting over 60 people with learning disabilities to get out to gigs regularly with their volunteer buddies is something we hadn’t even dreamed of. And what a dream team they really are backed up by our lovely board of trustees.

Gig Buddies Harry and Jeff at Southseafest

Now we’re just about to announce details of how we’re going to make use of £202,000 funding from the National Lottery to develop this work even further and support other organisations to set up their own Gig Buddies, just like ACL Disability Services in Sydney have done, and also Thera Scotland in Midlothian.

So in our small way Jerry’s movie ‘Heavy Load’ has helped us change the world we work in, even if at times it feels like the challenges are getting harder and harder for people with learning disabilities living in the UK right now. We’ve always known exactly what needs changing – the challenge is just exactly that ‘how to change it’.

Gig Buddies has also enabled us to widen our work to involve the local community, not just our wonderful band of volunteers and local arts organisations and support providers, but also venues and promoters (such as One Inch Badge, Music’s Not Dead,Sticky Mike’s Frog Bar and The Brighton Centre) all of who support our work in showing what a community should look like, with people at the margins welcome in the middle (or even in the mosh pit).

We also work within the wider community working with other organisations such as Attitude is Everything, Paradigm, Heart n Soul, Learning Disability Wales, Mencap and many others all striving to improve lives for people with learning disabilities. (And we were recognised as one of Nesta’s 50 New Radicalorganisations making a real difference in their community).

The thing that I’m not sure of, and what we really need to do, is how to connect with that potential army of support workers out there and get them thinking about how they can be part of the change we need to see, the change that people with learning disabilities are calling out for, to be able to live their lives how they want. We’ve connected with loads of people who agree with what we’re doing – but we know there’s many more who are working in systems and settings that create institutionalised practices and these are the people we really need to create debate with.

HOW CAN WE CREATE DISSENT AMONGST SUPPORT WORKERS?

They surely can’t be happy with how they have to work so we need to hold on to that hope and find ways to create dissent and provoke a response that drives positive change, delivering truly person centred support.

So we’ll be pondering this one – any suggestions gratefully received.

In the meantime I’ve got my ticket for How To Change The World, 9th Sep, Picture House Central, London and we’re also holding a screening of Heavy Load the movie at The Cowley Club, Brighton on Tuesday 18th Aug. There may be members of Heavy Load present to do the Q&A, who knows? (I’ll be there) – as ever with Heavy Load I never knew what was going to happen next, and that’s been the story so far with the running of Stay Up Late the charity.

The Power of One

I am outing myself as an Only Child. Not only an Only, but also dual nationality and on the easy end of the autistic spectrum with synaesthesia thrown in for good measure. Good grief, I am even professionally interested in myself.

 

There are tensions and delights to be had from all the above. I am Irish/English, and until I started school at a convent where I lived in London I had thought I lived in Wexford with trips to Dublin. I only ever met Irish people and they only ever talked about Irish things. My streets were Irish streets filled with Irish people and Irish papers. We visited Ireland many times and it was where Family was and where Family happened. Good stuff was there. So………slowly realising we lived in London and I was a little bit English was a bit of a moment. And the accent! Well, that was finally knocked out of me once I hit Grammar School in the Shires. As a bright pupil I was lucky enough to have earned a proper education for which I am grateful, but no room for diversity back then! Conform or suffer, the stuff of Grammar and Boarding Schools throughout the  Counties back in the day, and I am not sure it has changed much.  I chose not to suffer. Well, not too much……….

That flaccid grip on national identity has an upside. As an Only I am not a natural joiner, I stand back and evaluate, I overthink, buying into something is not an easy gig for an Only and that apartness, the sense of being outside, brings strength as well as missed opportunities: strength to say no, to weigh up friendships ruthlessly, to maintain integrity and authenticity even at the expense of relationships or career choices – to maintain rightness. Juggling the Irish English that is deep inside is made easier by the lack of joinership – without that need to be within, to join, there is less of a sense of loss of identity as the roots are not firm but swim and sway back and forth under the connecting Sea. The downside is the crushing disappointment that can be had if what one has bought into is revealed to be corrupt or decayed. Childish disappointment in an adult can be corrosive. And that smug integrity can mean an intolerance for others who disappoint, personally and professionally. But, topically, this background makes it easier to understand current cultural issues: amidst the multitude of “communities” that take root around the UK many individuals claim to be ignorant of some of the dreadful things some people within those communities plan and commit. Nonsense. An entire community that can maintain its identity so precisely within another host community does so only by knowing what is happening within and either supporting it or allowing it and by controlling its members. I do not believe those protestations of innocence that are paraded on the tellybox when an atrocity happens. They are not credible. I was on the verge of radicalisation myself – although of course we didn’t know what that meant then –  as a young girl with family members in Sinn Fein when the IRA was casually sold to us as a romantic and necessary part of our culture. My apartness saved me then, and I am grateful for it.

I was “home” recently in Enniscorthy. Travelling alone allowed me to reflect as much as I needed to: I went to see family and friends, spent time simply watching and hearing the Slaney and listening to the birds and the horses, soaked up the familiarity of the places and enjoyed the simaltaneous detachment that is in the DNA of an Only. I watched and listened – something Onlys do a lot. My synaesthesia means that listening is an often joyful and often inadvertent experience, as well as sometimes complex and distracting. The sound of the horses hooves on the turf became a very visual experience for me, the birdsong I enjoy every morning provides a colourful backdrop to activity. I can be surprised by a visual experience from an unexpected sound or some music that I had not expected to hear – delightful, if a little unnerving at times! And Ireland has the best beach on the planet in Curracloe, and I spent time there too. My children all had their first experience of sand there as babies, deliberately.  Saving Private Ryan was filmed there. The fine pale sandy beach is in surroundsound and stretches away right and left fringed by the magnificent dunes and rushes, and the ocean, with its mauves and greens and blues rolls away to the horizon where everything surely falls off and magically glides back home………It fills the vision and the senses and recalibrates everything within a few short breaths.

I also spent some time at my parents grave. No comfort there, I thought, just pain and grief. I was on the verge of an internal meltdown as I sat on the edge of the grave and ran my fingers through the pebbles and stones covering what remains of my parents. And then, a tiny dog appeared from nowhere. Genuinely, I was sitting in the centre of the graveyard and the dog had not been visible, and then he was, and he made a fuss of me and insisted on sitting on my lap and I had no option but to fuss him and talk to him. And slowly the world righted itself again and things came back into focus. Job done, he ambled off, only to return magically just as I was about to leave, insisting on a final fuss and chat. Small wonders make ones day. And as a wise friend said, The universe can be a calm and comforting place , the gentleness of its messengers can heal and support in the most unexpected ways.

So, in a circular way, we are back at Integrity and Rightness. A part of grief grows directly out of regrets: regrets for things done and not done, for mistakes that can never, now, be put right, conversations that can never, now, be had, and love that can no longer be shared or spoken.  However we treasure our integrity – my integrity – it will always fail somehow. And that is because we are all flawed and broken to some extent and we will forget to do things, or will choose activity that we later regret. And sitting there next to the place my parents now share as they shared so many years together before that, I started to understand it better. In the end we are all alone with our grief and our regrets as well as with our triumphs and achievements.

I feel grateful that things conspired to make me aware very early on of the Power of One. It made me a better leader and a worse follower, oddly both non-judgemental but also intolerant of hypocrisy, created in me an over-thinker but thoughtfully balanced that with a resilience and drive that has led me along a fabulously interesting and rewarding pathway. Not an easy companion but I hope a rewarding one for those who choose to be close to me, and I cherish those who choose to be so. Celebrating your own Power of One and connecting with that solitude that nourishes, you will discover the strength within. Trust me, I am an Only!

 

 

 

 

Hay Festival 2014

The Hay Festival couldn’t be more middle class if it changed its name to Pippa and married its cousin. And I love it. And if it becomes more Hay Market than Hay Festival at times, with the clear purpose of shifting tomes, then who cares? It delivers what it promises: a literary festival, a celebration, putting the word above all else and giving us all permission to sink into a proper vocabulary and literally indulge in wordplay.

 

I have spent most of this week sloshing around in mud listening to and talking with people who love words, people with something to say but who reached that point by listening to others and by reflecting and not by following dogma.  Joyfully reaching for the right words and finding them, hearing new ways of using them, turning context on its head and finding a new way to slip the surprisingly appropriate word prolepsis into general conversation – thank you Margaret Drabble! – has been a genuine inspiration.  Rustling about happily under the trestle tables in the Oxfam bookshop in the boxes filled with rummageable delights waiting in the dark to be found was the best time I have had in weeks. Possibly months. WarHorse and Michael Morpurgo  thrilled everyone, watching Marcus Brigstocke casually overtake a bunch of feathered aliens without a second glance on the path outside the Friends coffee shop was a little surreal, noticing the fact that we probably all had a proper education under our belts and were using it to good effect was a significant pleasure, and hearing children pronounce their words properly and insert the letter “t” in the right place was phenomenal! No extraneous or dropped aitches either, bliss! Not a baggy trousered foul mouthed rap artist in sight or hearing, and there were times when I was one of the youngest in the queue, and it is a long time since that happened………

Listening to a group of academics with serious life experiences attempt to shed light on prison life and its consequences – dear to my heart – it occurred to me that even in a room full of Telegraph readers, and I am one, the Grauniad Effect (my husbands media drug of choice)  was apparent. Most of us gave a damn, giving the lie to political drubmongers who like to insist on the differences rather than the similarities between groups of people.  That was also apparent in other conversations, and one that focussed on corporate greed was particularly pertinent. The workshops around Social Enterprise were a real pleasure and welcome at the heart of the Festival as a demonstration of how things can be done  ethically and well.

Downsides? Well……..I was unprepared for the ill mannered stampede of middle aged middle class audiences as they clambered over and around people to find their favourite seats! The wonderfully patient and charming stewards allowed those of us with mobility issues into the tents first to avoid catastophe – no-one wants Hay Headlines about mangled elders or the dissed disabled – but as soon as the hordes, or to use their title Friends of Hay (and I am also one) were released into the tents all Hell broke loose with disabled feet trodden into the dirt and bags ground into the floor as they shouldered and elbowed their way to “their” seats. Clashes were inevitable and there was,  I am sorry to say, a degree of braying involved at times. And although the lavatories maintained their dignity against all odds I did occasionally wonder, as I took my ease,  on  the number of buttocks that had been pressed against those seats during the week……..I was also a little alarmed to find I shared Jonathan Millers haircut and colour so startlingly that I wondered who had put the mirror on the table as I entered the bookshop……..

Being a seasoned Hay Friend I staggered my meals so that I ate between the usual meal times and avoided the crowds and it was very pleasant with all tastes catered for, although I did wonder if vegan and gluten free also meant salt and pepper free a couple of times as I searched for seasoning – but once I had found it the food perked up. In fact, the food even for us fussies was indecently good and I enjoyed it very much. Good choices, well prepared, charmingly served. The people running the show, from box office to stewards to food hall and more, deserve a medal!

The B&B, The Old Vicarage in Prestiegne, where I always stay was, as usual, perfect and this year they even have alpacas as well so I woke to the sound of sheep, alpacas and chickens and a real symphony of birdsong, and breakfasted brilliantly with a view over the fields and with the sound of a stream in the background. It couldn’t have been better. Best start to a Hay Day ever.

 

And now my Hay Days are over for 2014, but the mud is still on the car and my boots – and my jeans and my skirt and my jacket! And I have a fresh stash of books, images and memories and the certainty that words matter, that we can use them better, and that we should.  And I will plan for next year when I hope that we will make Hay in the sunshine and not the rain and I can rummage and read and rest and draw comfort from more wordsmiths. Hay Ho.

 

 

 

 

Coriolanus at The Donmar. A little closer to Heaven.

Shakespeare reveals us to ourselves relentlessly. Prepare for some pain and some joy: your Mothering will be exposed and scrutinised, your integrity questioned and your capacity for denial cruelly interrogated. Hear the words and witness the actors tears, smell the sweat, live the life. And exit powerfully uplifted and enriched.

Tom  Hiddleston is Coriolanus at the Donmar. He actually is Coriolanus. There was nothing he could have done differently or more that would have enhanced the role or created a more vivid or wounded picture.  From the moment he stepped onto the stage – a sparse stage managed with skill and infinite wisdom – he owned us. He was also surrounded by actors who almost without exception  understood the context not just of the words but of the building and the stage. His performance was breathtaking and mesmerising, his body entirely used up in offering us the internally broken son inhabiting the Warriors body, struggling with the effect of the power-ebb-and-flow and the political flexing of the ruthlessly under-educated and under-prepared.  Deborah Findlay touched chord after chord as the Mother. Josie Rourke has nurtured and created a piece of history.

A difficult play to stage, in  many ways, and more challenges at the Donmar than in some other venues because of the proximity. Startlingly efficient use of the space, staggering beauty delivered through blood and light, and a fearless viciousness allowed inside the audience space  created a wonderful Shakespearean intimacy that made it impossible not to engage. Apart from the eejit sitting next to my husband who fidgeted and looked at his watch throughout the performance and should therefore, of course, be slapped many times. He even managed to chew the lid of his cup and flap his programme about irritatingly while the play was on. I needed to ask him why he had bothered coming at all but didn’t trust myself not to administer the required slapping if  I spoke to him afterwards.  Regretting the missed opportunity even now – I suspect he still doesn’t know how close he came to off stage violence. The only jarring note on stage in the entire event was the first speaker, an actor trying a little too hard inside the context of this theatre, out-acting herself and creating a slightly discordant sound next to the exceptionally engaging and variegated performances of her colleagues, who managed to maintain their performances even when not centre stage without drawing attention to themselves or causing dislocation – one of the most difficult jobs on the stage. And a word in recognition of how very uncomfortable Tom must have been during some of the bloodier scenes, particularly the final scene – but worth it, Tom! Very very worth it.

If you haven’t yet been, just go if you can. I can’t say more than that.

The Light Of The World

You are light for the world… your light must shine in people’s sight, so that, seeing your good works, they may give praise to your Father in heaven.

In John’s Gospel, Jesus declares that he is the light of the world. Here, in Matthew, each of us is told that we, too, are light for the world.

Sometimes we miss the point of light: complacently we accept it as just light, the element that allows us to see. But we forget that it does not illuminate itself, it enables vision. We shine a light away from ourselves in order that sight is allowed. Humility can be difficult to practice, especially in a competitive and often adversarial environment, but practice it we must. As regular readers and colleagues who know me well already understand, I see business as a means to an end and not an end in itself, with integrity and respect at its heart. If business is not enhancing life, what is its point? Without that humility we will miss the point of what we do and we will have failed. Success so often means highlighting others aspirations, successes and ways forward – shine your light and let others dance in the spotlight.

Food Glorious Food?

Sharing meals allows us to come together and spend quality time with each other. It increases communication and understanding.  How many of us had our first experience of another culture through food? And coming together to prepare and eat food is part of many rituals and traditions. Food plays a big part in faith and in worship. When one shares in the Eucharist, it is said to be a  sharing of Christ’s body and blood, and worshippers are reminded of their responsibility to share all our meals with others. As St John Chrysostom once said, “You have tasted the blood of the Lord, yet you do not recognise your brother…You dishonour this table when you do not judge worthy of sharing your food someone judged worthy to take part in this meal.” Most faiths and religions have food rituals, most cultures have food rituals and norms. Food is significant. Food rituals – cutlery or lack of, how the food is produced (is it Halal? Organic? Vegan? Kosher?), how it is presented, how it is eaten – matter deeply to us all. The only people for whom those things no longer matter are the hungry, and even then I have known seriously hungry people refuse non-kosher or non-vegan food. So it is quite simply that important.

So…..

How many times recently have we heard about nurses now being expected to “feed and wash” patients for a year before they train? How many times do support workers and health professionals refer to “feeding” their patients or clients? The act of eating is reduced, for some, to the passive “feeding” offered by “carers”. It is reduced, for the care-givers, to a task to be got out of the way before the serious business of training, the important job of “nursing”, can be carried out. This simple attitude reduces human and humane care giving to the status of animal welfare. Now, let us acknowledge that there are similarities between the two, and animal welfare is very important. But in offering to care for and support other human beings we need to respect and acknowledge their humanity, and one of the few things that identifies humans as distinct from other animals is the development of specific and identifiable social rituals, especially around food, and the food rituals often define what we are as people: they indicate and specify how we live, what we believe, what matters to us.

The attitude that accepts us saying we are going to “feed” people when what we should  mean is that we are going to help them to eat or support them to eat is the same attitude that allows nurses and care givers to say things like “I have done Mrs Brown” when they mean they have helped or supported Mrs Brown to wash, or dress, or change her colostomy bag, or any of the other deeply personal, uncomfortable and intimate things carers do for us.  Those words, casually used and casually accepted, reduce our collective humanity, remove our independence. They remove the respect for our humanity that we properly expect our nurses and carers to demonstrate. They allow the casual neglect – and even the active cruelty – that we have seen in Winterbourne and at Stafford, and the many other places that have not yet hit the headlines. How can we pretend to be surprised by those events when we use the words that support the attitude of neglect and cruelty?

The words we use define how we behave, demonstrate how we think.  Let us challenge the use of words that encourage patient-passivity such as “feeding”, let us encourage the words that support active care such as “supporting, or assisting, to eat”. The former gives us a picture of food being shovelled into a patients mouth as a “carers” task, the latter gives us a picture of  someone in control of their food, being helped to perform their own task.  Notice the difference between “bathing” someone and “helping someone to bathe”.

When we become vulnerable through age, illness, disability or other reasons we often lose the option of privacy or dignity only because of the attitudes of the people tasked with supporting and assisting us. There are many discussions about why care can be poor, and often the poor wages are cited. And that is a factor – pay peanuts and you get chimps, and low wages do not reflect the importance of the job – but there is never, at any price, wage or  reward any excuse for reducing another persons humanity, for dragging away another human beings respect and trampling on their dignity. Individuals are responsible for their own behaviour and we should expect people recruited to care and support to behave properly – but the modelling of those good behaviours will flow from the leadership. If the people leading the services and the organisations do not demonstrate the crucial behaviours that indicate respect, humanity and the support of autonomy and independence for all then the people following those leaders will have no incentive to do so.

If you offer someone care and support, please, feed your dog but support your patient to eat.

Remember this……….

Indeed…………

 

 

Another powerful argument against Yes-Men and Yes-Women!

 

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