Seeing the world through new eyes?

About 1 person in 3 in the UK lives with a long-term condition. From asthma to diabetes, Crohn’s to bi-polar, an increasing number of us are having to face life radically altered by the limitations our failing bodies throw at us.

Whilst some of these long-term conditions bring with them very obvious visible signs and so send a message to society that the individual is having a very different life experience to someone who is totally healthy, others remain hidden and known only to those who live with the condition and those who care for them. Are we missing an opportunity to grow as a society by remaining blind to these experiences?

The twentieth century was the century when society became more aware of the needs and rights of people living with disability or a long term condition. Public buildings were redesigned to accommodate wheelchair access, employment law was rewritten to support those who may require adjustment to their working environment, and organisations such as The Alzheimer’s Society were established. This has resulted in a society which is in many ways much more accommodating to the needs of people living with long-term conditions.

But as an increasing percentage of our population is likely to face living with a long-term condition in the future, what does the twenty-first century promise us? What other possibilities are opened up for society to evolve in even more ways?

I have recently been reading Cathy Lloyd and Tom Heller’s ‘Long-term Conditions: challenges in health and social care’ (published by Sage in 2011). Partly because I have a chapter in it, partly because it is relevant to my work, partly because I live with a long-term condition myself, and partly because it is quite simply a very good read! In the final chapter Stephen Pattison explores what living with a long-term condition asks of us, and what in turn society can learn from such personal demands. We live, he points out, in a pleasure-hungry competitive society, which marginalizes the experiences, needs and values of people living with long-term conditions. Nonetheless, living with a long-term condition can foster ‘patience, realism, acceptance of limits, gratitude, seeing the possibilities of pleasure and good within strictly confined situations’ (Pattison, 2011. 202). These are values we should surely hold dear as a society as well? Seen from this perspective, people who live with long-term conditions have something very valuable to teach us all.

So next time you hear someone complaining about the ‘burden of disease’ our welfare state has to foot the bill for, think for a moment about what could be learnt to make the world a better place, if, instead of seeing people with long-term conditions as expensive problems, we understand them as people who might have something of ultimate value to say to the rest of society as well. If only we took the time to stop, listen and learn.  

Reference: Pattison S (2011) Ethics and Long-term Conditions: a reflective approach. In Lloyd CE and Heller T (Eds.) Long-term Conditions: challenges in health and social care  Sage, London. 199-210

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Leaders, managers, yogis and a film crew. Changing the world one step at a time?

‘Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has’ (Margaret Meed).

Lisa checks the camera

 A colleague recently shared this quote with me in relation to some filming we were doing for our new module on management and leadership in health and social care. Most of the filming took place in the front room of a small flat in Aberystwyth. Aberystwyth is currently facing the loss of essential hospital services due to restructuring and centralisation. So we were filming in a small space, in a small town, for a potentially small audience, but what we were doing speaks to any thoughtful, committed citizen who cares about the world.

As a team we share a vision that through this module we can help the leaders and managers of the future to shape the health and social care services of the future – to change the world for the better. Perhaps it is an idealistic vision, but it helps us believe that what we are doing is worthwhile and can make a difference.

At this time when the value and purpose of universities is being called into question, the belief that higher education – the research we conduct and the learning that we facilitate – can make a difference is crucial not only for our own sense of self worth but for the future of universities across the UK.

In my mind, if what we do inspires just one person to go out and do their bit to make this world a better one – or even just to make that world more bearable for that individual – then it has been worth it. That’s why this month I published an article in Om Yoga Magazine. Om Yoga Magazine is always full of idyllic images of exotic ashrams, adverts for holistic retreats and features on the latest yoga studio opening up in some fashionable district of London. But the reality for most people is that yoga practice takes places in decidedly less tranquil surroundings. They’re lucky if the local gym runs a weekly class, or they carve out moments of time in a corner of the front room, in between getting home from work and cooking the kids’ tea.

Time to change your world?

But my research on ‘therapeutic landscapes’ shows that just because someone’s lifestyle, location or budget may not stretch to the perfect spiritual yoga experience, it doesn’t mean those moments of practice should be any less powerful.  So in my article I explore how a person’s approach to the spaces they practice yoga in can have a huge impact on the experience – and by being aware of this they can get the full ashram experience without having to leave their front room.

Managers in health and social care and individual yogis in their front rooms may be small groups of people, worlds apart – but each in their own way can change the world if they want to, and if my research and teaching can help in any small way towards that end, then I will be happy. Namaste.

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>Riots, looting and the search for an alternative

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During the election campaign of 2010 David Cameron was pictured astride a Quattro with the slogan ‘It’s time for change’, with Labour’s comeback replacing the slogan with: ‘Don’t let him take Britain back to the 1980s’. The ad of course mimicked the much loved ‘Life on Mars’ character Gene Hunt, who was always ready to fire up his dream machine and leap into aggressive action.

I doubt even Mr Cameron realised at the time just how close he would end up taking us back to the 1980s. The cuts, strikes, riots and disaffected youth that have erupted since he took his seat at Number 10 have brought us eerily close to the ‘Ghost Town’ immortalised by The Specials in 1981. Yet today as Britain faces another night of potential violence and destruction, and politicians and the police are vociferously insisting (on every news channel, blog or social networking forum they can get access to), that the full force of the law will be used against the perpetrators, I wonder whether there may be a less aggressive, less violent, and more positive way of trying to turn the tide of social disintegration and urban anarchy we appear to be facing.

Former atheist, Shelley Yates experienced communicating with spirit beings when she died before being brought back to life. She now believes we are all spiritual beings capable of creating miracles, and that collectively we have the potential to heal the world, not just destroy it. In 2007 and 2009 she co-ordinated two global meditations, and is planning the third for November 2011. In the first of these ‘Fire the Grid’ meditations millions of people took part in over 80 countries, spending an hour doing something that brought them joy, with the aim of shifting the earth’s vibrations to produce a better future for our children.

A cynic would say this is wishful thinking, and that looking for the joy in everything simply ignores the very real misery and suffering we see around us everyday. This is a fair point, however, there is something to be said for focusing on the positive and joyful things that are going on around us everyday, rather than allowing the negativity to expand and fill every waking moment. It is a core principle in things like mindfulness or cognitive behaviour therapy for instance, which aim at changing the way people think about and react to the world around them. And although this may not always be sufficient to change the world in itself, it can give people the tools and confidence to tackle issues which previously appeared insurmountable.

The problem is we rarely see anything positive portrayed in the media – and if we do it comes as the ‘and finally…’ story at the end of the ‘more important’ news of misery and destruction. What if every single one of Shelley’s millions of people in their 80 countries had been given media time to show people that there are some positive things going on in the world if we just sit up and take notice? Could we retrain the media to see the positive in the world, or is nobody interested?

What has this to do with this week’s looting? Well I was one of the peaceful marchers on 26 March in the London March for the Alternative this year. I spent all day surrounded by millions of other peaceful marchers, supportive police and a genuine sense of being in this together, for each other. Yet in the days that followed all I saw in the newspapers and on television were reports of the tiny minority of protestors who had decided to use violence and force to get their message across and shatter communities as a result. People I spoke to knew only this side of the story, and heard nothing about the genuine sense of togetherness and community spirit that arose for those who had taken the time out to march and make a positive stand.

What if the headlines the following day had been about this instead? – Cameron’s ‘big society’ out on the streets and ready to come together in the hope of making a positive change for our kids. It was an amazing sensation to be a part of that, it felt liberating, empowering and potentially (if rather idealistically!) world-changing. Whilst some may argue it had no real impact and didn’t change the world for the better, many thousands of people who took part in that march have since gone on to stand up for services in their local communities, to volunteer to keep community initiatives running despite the cuts that have closed so many others down, or to lobby their MPs and secure changes – however small – in the cuts being proposed. They continue to believe in an alternative. But our media has chosen to ignore this potential for peaceful change and focus instead on the more headline grabbing violence of the few, reinforcing in the reader’s mind that we are a society out of control on self-interest and mindless violence.

But are we? Shelley Yates and the millions of participants in her global meditations think not, yet where were the headlines when they performed their peaceful demonstrations to heal the world rather than destroy it? It would appear it doesn’t make good news, however many millions are involved. Perhaps it is time for an alternative – not to fire up the Quattro and return to the misery of the Ghost Town, but instead to take a leap of faith and fire up the grid! Whether or not it has any concrete impact in our material world, at least it won’t involve a massive clean-up the following morning, and nobody will get hurt. At the very least, it will ensure everyone thinks about something joyful for an hour instead of all the misery. Surely that can’t be a bad thing.

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>Medium Madness on the BBC?

>Broadcaster Rosie Millard had a right bee in her bonnet this weekend, over the question ‘should money making mediums be banned?’ discussed on this week’s Sunday Morning Live. She had a double pronged attack: firstly, that charging by these ‘con-artists’ should be banned, and secondly, that if mediums have a ‘gift’ then they shouldn’t charge for it. It should be offered freely. As one of the studio guests pointed out, her reasoning was therefore slightly flawed and contradictory, and the programme failed to open the floor for intelligent debate.

The ‘experts’ in the studio consisted of the irate Rosie Millard and a Radio talk show host, neither of whom seemed to have any genuine insight into the issue under discussion (or should that be ‘under attack’). The exception was Seema Malhotra, Director of the Fabian Women’s Network, who kept pointing out that it is not up to ‘us’ to impose our own values and beliefs on others. She said if those who consult mediums – and pay for it – get comfort and guidance, others have little right to denigrate it just because they don’t believe.

Seema also pointed out that if Rosie wanted to ban people paying mediums for their ‘gift’ or ‘service’, then we would presumably have to start judging on whether we can charge or pay for other ‘gifts’ and ‘services’, such as art, psychology or even journalism (though whether the latter is either a gift or a service is debatable right now).

For a programme which is meant to debate moral issues intelligently this item was poorly put together. When they did actually talk to a medium, this was only on a video link and they did not do the courtesy of putting her name up on the screen like they did for the other guests. And during the entire video-link Rosie looked down her nose at the medium as if she was something nasty she had just trodden in.

Rosie wanted to know where the ‘scientific proof’ was that mediums can talk to the dead and that there is life after death. Presumably if she had this proof she would be happy for mediums to charge, even if they are invested with a gift? But my feeling is perhaps the programme was asking the wrong questions of the wrong people. If they had taken a little more time to research the knowledge we do have about the social and psychological value of things like visiting mediums or believing in life after death, then they might have had a more interesting discussion about whether people (mediums, psychologists, artists, journalists, or whoever) should be able to charge for bringing comfort, healing and security to some people’s lives.

Professor Chris French began to explore the reality (as opposed to Rosie’s hysteria), by pointing out that such beliefs can bring psychological help and comfort, and if people take comfort from that, and they are adults, then that is their choice. But they spent little time talking to him, and completely failed to address the spiritual links and underpinnings to the whole issue. They also completely missed the point that professional mediums are only one small part of a much larger population that is actively exploring the whole ‘life after death’ question. As Seema tried to make clear, we need to know more about the impact of this in people’s lives and only then should we pass judgement. They couldn’t do this on the show because they hadn’t done the necessary research beforehand.

If the BBC had invited me I could have answered Seema’s point, and told them that there is a wealth of scientific knowledge out here. But Seema apart, they didn’t really seem to want to know, and besides, I don’t think I could have braved Rosie’s arrogance and condescending looks.
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>Grave stones and kipper ties

> At The Open University we pride ourselves on being at the forefront of developments in distance learning. In the early days, this meant late night television programmes with mad scientists wearing kipper ties – the hallmark of what our University stood for. Today it is about high profile prime time television series such as ‘Coast’, but it is also about using the online environment creatively to deliver course materials to students in the best possible ways.

As academics at The Open University, we can feel cut off from our student body, and students can find the faceless course materials a little impersonal – never knowing who really produced the things they are studying. One of the ways we can overcome this is to build on the OU’s history of audio-visual expertise, and many of our online courses now have embedded within them carefully crafted video presentations so students can meet the academics behind the scenes, learn about their research, and get a sense of that face-to-face learning they might enjoy at a more conventional university. Of course putting yourself in front of camera requires certain skills and competencies, and the confidence that you can ‘get it right’.

So staff at the OU are offered opportunities to go on intensive ‘media training’, where they can learn how to record a piece to camera. And this is why yesterday afternoon I found myself striding through a graveyard, chucking tarot cards over my shoulder and talking earnestly into the lens of a camera held by a cameraman backing away from me; both of us trying not to trip over fallen gravestones in the process.

When I mentioned to the production team that I was thinking of using tarot cards as a prop they had immediately jumped on the idea of using the graveyard as the location. I found myself feeling a little ambivalent however. I was talking about my research – and my research shows that people’s relationship with spirit, otherworldly entities and the deceased is not all about graveyards and churches. The message from my research is that, for some, the power of spirit is all around in everyday places, and not restricted to stereotypically ‘spooky’ sites or encounters.

Yet there’s no denying that gravestones and churchyards speak symbolically of spirit and otherworlds, and I have to admit that shooting on location next to the church was a lot more appealing than sitting behind a desk in the recording studio. So there I was, pacing slowly forwards through overgrown grass and grave plots, wondering whether I was going to get to the end of my piece-to-camera without falling over, wondering how we might be able to use a similar technique in our new course, and wondering of course if I was ‘getting it right’… But I think above all else, I was wondering whether I should have worn a kipper tie for the day.

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>Is there anybody there…?

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‘In a secularised Protestant society such as Britain, the living and the dead are separated not only physically, but also conceptually, with transgressors across the boundary (ghosts, prayers for the dead, appearances of the dead to the bereaved, spiritualist mediums) treated with suspicion’ (Walter, 2004. 472).

As I near the end of this particular stage of this project I have been reflecting on the process of crossing Walter’s ‘boundary’ for research purposes. For those who regularly weave a ‘spirit world’ into their everyday living, it becomes a vital component in the fabric of their social and material worlds. As a researcher, seeking, encountering and interpreting these worlds, I know they cannot be extracted from how we think and theorise about the visible and material worlds we think we know.
However, when speaking to an audience of peers – with both feet firmly planted on one side of Walter’s boundary – I have found it is not only the transgressors who are treated with suspicion, but also myself for choosing to present them as valid research concerns. And so I have had to tread carefully in terms of how I present what I have found, to whom and in what context.
I am now fully immersed in the process of ‘disemmination’. Of course the main ‘output’ will be the book with Palgrave Macmillan, but under pressure as academics always are to publish widely and present far and wide, I have to find as many different dissemination roots as possible, to make the most of every bit of data and every insight gleened.
In this process audiences are of course diverse – I have included some of my research findings in a chapter on living with ME in a book on long term conditions coming out with Sage in the Autumn. The audience here is likely to be students and practitioners wanting to develop insight into caring for and coping with long term conditions, for whom the ‘spooky’ angle touched upon in my chapter may be pushed aside in favour of concentrating on more concrete matters of the here and now. I have presented at the Vital Signs Conference on ‘Engaging Research Imaginations’ at Manchester University, here the audience were a receptive mix of social scientists and humanities scholars, unusually open (for academics!) to the idea that for some people spirit lives alongside them in everyday spaces and places. And today I have a piece in the latest issue of The Journal of Paranthropology, the readership of which I should imagine will have no concerns about the legitimacy of crossing Walter’s boundary.
And then there is my day job. Senior Lecturer in Health and Wellbeing, where I work with practitioners and scholars who stand in high regard in their field and whom I admire considerably. But it is slightly more difficult sometimes amongst them to explain precisely what the place is of transgressing the boundary for those who use spirit connections to enhance their health and wellbeing. This is how a conversation went with one of my colleagues over coffee one morning:
Sara: I’m interviewing people about their experiences with angel healing.
Colleague: Angel healing? What’s that?
Sara: It’s where the healer channels energy from angels.
Colleague: But angels don’t exist do they, so how can they heal? That’s just ridiculous!
[Nervous but self-righteous laughter]
Now according to our code of ethics, researchers within The Open University have to: ‘Treat all those associated with their research with respect.’ So how should I have responded to my colleague? I know how she was expecting me to respond. She wanted me to laugh it off with her, to support her own unease and discomfort, and say of course angels don’t exist and it is all nonsense. But how would that be showing my research participants respect?
So as I throw myself back over the boundary, and into the very earthly process of dissemination, I find myself grappling with precisely how far, when and with whom, I can push against that invisible divide. For social scientists to be interested in their place in the world, it really doesn’t matter whether angels ‘exist’ or they don’t. What matters is the effect that believing in angels can have on a person’s world of experience. And that, as I have been finding out, can be immeasurable!
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>Harvest Festivals: What does it all mean?

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The Corn King gives his life for the land
We toast his sacrifice with ale in our hand,
And eat the bread, from the harvest made,
As sheaves of corn to the earth are laid.
It’s the harvest festival at my kids’ school today. And I sent them off, no not with loaves of bread or bags of fruit, not even the tin of baked beans or bottle of stout that it used to be when I was a girl, but with a bag of loose change. For today when they learn about the annual celebration of what the land has given us through our sweat and toil, they won’t be compiling food parcels for local people in need, but will be counting coppers to send to charity.
Ok, so the end result might be the same – giving to help those who need it, and I don’t object to that at all. But there are plenty of other opportunities for them to put pennies into buckets and boxes, or raise money for relief campaigns. What I wonder about is what the harvest festival is meant to signify. Isn’t it about our relationship with the land? Wouldn’t this be an ideal time for the school to discuss not just notions of ‘Christian charity’ (with a Pagan festival!), but also to raise kids’ awareness of just how precious the land is for our survival. Rather than send the message out yet again that all that counts at the end of the day is hard cash.
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>ME Awareness Day: All in the mind?

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Today is ME Awareness Day and people with ME everywhere (myself included!) are fighting to get wider recognition and understanding of this debilitating and often devastating condition.

As a strange coincidence I am also writing a chapter on ME for a forthcoming book on longterm conditions. For this chapter I’m particularly interested in finding people who use ‘alternative’ healing approaches for their ME, from the obvious homeopathy and accupuncture, to less conventional alternatives, such as crystal therapy or angel healing.

But what is interesting is that there seems to be quite a lot of animosity amongst ME sufferers towards any suggestion that such healing approaches might be of any benefit to them. It seems that because ME is already often dismissed as ‘all in the mind’ by some people, that many who are diagnosed with ME are then reluctant to subscribe to anything else which is seen as equally ‘non-provable’.
Yet in my mind, does it matter if something has been scientifically validated if it exists or works in the lives of those it affects? By this I mean – I know I have ME and that it affects my life, regardless of how many scientists or medics might try and dismiss it as ‘all in the mind’. As a student of Reiki I also know that when I receive or give myself Reiki healing it energises me and can ease pain. Now I have no idea either what causes my ME, or what it is that is happening when the Reiki relieves me. But I do know that for me, both have very real effects in my life, ragardless of their lack of scientific credibility.

Surely there must be more ME sufferers out there who would agree..?
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>Psychic Beliefs: do you share yours?

>Let me introduce to you my great grandmother – who was a practicing spiritualist medium at a time when she could still have been convicted under the 1735 Witchcraft Act. Police officers would regularly attend her seances undercover, trying to prove she was up to no good. Unfortunately for them, her guides would always draw her attention to the fact that there was ‘someone with big feet’ in the room who shouldn’t be – and she would calmly welcome ‘the police officer amongst us’ and scare the living daylights out of them!

Today Alan Power is going to court to claim that his psychic beliefs led to his sacking from the police. Alan is using rules designed to prevent religious discrimination in the workplace. His former employers are claiming his beliefs did not amount to a ‘religious conviction’ – despite Alan having been a member of the Spiritualist Church for 30 years. As the Spiritualist Church is one of only two legally recognised religions in Britain today, my feeling is that Alan has a point. Good luck to him.

The police regularly use psychic investigators to try and gain insight into problematic cases, but appear to prefer to keep this aspect of their work out of the public eye. In 2006 apparently 28 police forces denied using psychics at all – which still leaves many more who either do, or are unwilling to commit either way.

Given Alan Power’s experience such silence is understandable. And I’m sure he is far from alone in facing discrimination in the workforce because of his spiritualist beliefs – namely, that there is life after death and it is possible to communicate with the dead. After all, wasn’t there some other famous man who was meant to have returned from the dead and communicated with his people..? And I’m not sure any employer could get away with sacking someone for believing in Jesus; even in this secular age.
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>Divine guidance? Angels, tooth fairies and what we can ‘know’

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“Do we really know anything and, if so, what?
And how do we know it?
And how do we know that we know it?
And how do we know that we know that we know it?”
(Jones and Wilson (1987) An Incomplete Education. Page 302).

In a recent posting on the website of The Telegraph Christopher Howse reported on the possible presence of angels amongst us. Suggesting 38 per cent of Britons believe in angels he said ‘a university lecturer’ had criticised parents for dismissing their children’s reports of angel sightings.

Howse doesn’t say who that university lecturer is, but his article raises interesting questions and provoked heated comments from readers. These ranged from numerous reported angel sightings by both adults and children, to a fair number of postings expressing a huge degree of animosity, from those who hadn’t seen angels and knew they never would.

What is it that makes people so angry about the possibility of there being things we are yet to fully understand?

And even if angels don’t ‘exist’ (whatever that might mean), for those who believe they exist they have a very real impact on their lives.

One irate commentator said there has never been any tangible evidence of anything like Angels, Father Christmas or God. I’m guessing he would probably include the tooth fairy in that list. Yet thousands of lucky children have tangible evidence of the tooth fairy’s existence. They believe that if they put a tooth under their pillow at night the tooth fair will come and take it and replace it with a coin.

And thousands of children have their theory proved right by the very tangible evidence of a coin the next morning.

Who or what the tooth fairy may be is disputable, but their belief in the existence of a power which can manifest that coin is strong enough to bring that coin into being. The child who knows there is no tooth fairy refuses to put the tooth under their pillow. And hey presto they too have their proof of its non-existence because they don’t receive a coin.

If we believe there are people – or angels – out there who are there to generate good and positive experiences in our world, then chances are we will come across people and opportunities that generate those good experiences.

Whether or not there is ‘tangible evidence’ of the precise origin of that good experience seems somewhat irrelevant to those whose lives have benefited.

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