Dementia Friends

At any one time one in fourteen people will develop symptoms of dementia, meaning all of us are likely to at some stage in our lives come into contact with someone affected by it.

Elizabeth Taylor from Dementia Friends enlightened us at Normal? Festival to some of the myths and misconceptions that have built up around dementia, and offered practical advice as to how we might help. Some of her stories of people's experience were unexpected. I for one did not realise that the large black doormats, so prevalent in shops, have sometimes posed a real fear for patients she has worked with: they imagine they will fall into a dark hole! I'm sure many of us remember as a child not walking on the lines of the pavement for that same reason, as in A.A Milnes poem ‘Between the Lines’. Elizabeth describes dementia as a bookcase of the crappy MDF sort, each shelf representing a decade, with the most recent years on top. When someone shakes the bookcase, the most recent books and memories fall first.

People can live well with dementia, so why is it still such a taboo subject? Dementia Friends aims to encourage positive steps, small things that make a huge difference. It reminds me of the words of the poet Rumi - ‘drive slowly, some of us walking alongside are lame’. Often, we cease to see the person and define them by the disease. Elizabeth's example is of Mabel, who loves gardening and has “green fingers” also enjoying baking amazing cakes. So why is it that when people talk of her she is just Mabel with dementia? If we can take one positive from the talk and be a dementia friend it must be ‘Please Don't Label Mabel!’. (SE)

- Sandra Elkins

Links Relevant to This Diagnosis:

Dementia Friends - https://www.dementiafriends.org.uk

Age UK – Help and Support for Dementia

A Walk Through Dementia - http://www.awalkthroughdementia.org

Share the Orange - https://www.youtube.com/watch?v=x9MvEZskR6o

sharetheorange,danceforlife,dontlabelmabel,dementia

Johannes Klabbers // Posthumanist Therapy

Johannes Klabbers is a therapist who has worked in Melbourne with people with cancer and terminal illness. As a narrative therapist, he explores our relationship with death – or lack of it. His entrance to his talk was enthusiastic and his presentation in large friendly capital letters. Klabbers asks not what things are, but what they could be. He frames this as a posthumanist project, the next stage of thinking after humanism.

The thing about dying is that we know it’s there, but that a diagnosis of its coming changes our relationship with time itself.  Our general inability to acknowledge our own finiteness distorts our relationship with life. This is a problem, Klabbers says, and a problem, within a problem, with further complications. People are unhappy and don’t know to whom to turn to find answers to existential issues. Klabbers advocates for the need to organise ourselves and open a discussion about this.  He quotes Kant, Descartes and Camus as presenting different ways of being in the world in their time, but these methods now need updating.

Hope is for children – while it may nourish in the short term, its value is minimal and as a result it may collapse around us if the structure is unstable. Optimism, on the other hand, is a conscious, autonomous decision that any one of us can make. There is undoubtedly countless pain and suffering in the world and an imbalance on many levels. 600 people own 50% of the world’s resources and a million people worldwide kill themselves annually, adding further anguish to those left behind. Klabbers doesn’t believe in the 45-minute therapy model: he talks with people for as long as needed. He makes the point that reality is not as fixed as we believe, as quantum mechanics is now showing.  

The big question: What are we? Klabbers is in residence throughout Normal? to chew over these questions with anyone seeking to engage with them. It’s not that there are no alternatives to the current system, it’s just that they’re so hard to imagine. So how do we decide what’s actually important? The answers: respect for the other, enjoying our difference and empathy for each other’s journeys and challenges. Johannes has also had a pre-cognitive dream foretelling the date of his own death.  While it suggest a ripe age, he still only has about 10,000 days to go.  He’s therefore hoping to report something significant for each of those days to give them value.  

- Madlin Bee

Links Relevant to this Diagnosis:

Johannes Klabbers – www.johannesk.com

Klabbers - About Posthumanist Therapy in Q&A Form

David Klinghoffer – Darwin, Marx and Freud: The Genealogy of Posthumanism

Mark Fisher – Capitalist Realism

Living Words // Shutnell

A brain themed game of piñata offers up the first of many glimpses into the world of those living with a dementia. Eleven minutes of fragmented insights. The thrum of an MRI scan; just ankles, stripy socks and a mark on the bottom of one shoe to contemplate on.  We wait for a bomb to detonate, loud beeps marking the countdown. A calm plunge into deep water as internal chatter is left behind. The jerky mesmeric dance of communication even in the end stages of a disease that has stripped away brain function. Words. A soundtrack of words. We are asked to consider the invisible thread that links two brains through the medium of communication. Where does one person end and the other begin?

Susanna Howard, artistic director of the Living Words charity, has spent a decade working with people living with a dementia. Going into care homes and hospices, her team of writers offer people the opportunity to rediscover their voice. A voice they might have lost during the progression of the disease. By recording and reading aloud the words of those they work with, they gift families and the individual themselves a chance to see themselves as a person again at a time when it is all to easy to see just a disease. Howard has previously written, directed and produced two stage productions on similar themes for the Normal? festival and this year her process has evolved into a short film of enquiry into the quiet, noisy, joyful, tearful, angry, peaceful world of a dementia.

Tracy (published poet), Wayne (passionate campaigner) and Glynis (keen gardener) join Susanna both in the film and on stage afterwards for a discussion around what it's like living with a disease that affects one in three people over the age of 65 in the UK, and increasingly those nowhere near that age. David comments on the choice to include three people recently diagnosed with a dementia rather than those in the end stages, and we are reminded that each of these human beings are living well in abundant family and friend filled lives.

I leave the auditorium considering the importance of the acceptance of life of life’s terms, no matter the steep cliff faces we have to climb and the immeasurable value that comes from being a mindful and aware participant in the journey. In a world fraught with division, anger, isolation and lives often lived out of sync, I'm reminded of the potential for interconnectedness that breathes and evolves through communication, no matter its shape. 

‘It's like we become each other when we are really listening.’

(MJ)

- Melissa Jacob

LINKS RELEVANT TO THIS DIAGNOSIS:

Living Words - http://livingwords.org.uk

Dementia Friendly Kent - http://dementiafriendlykent.org.uk

Alzheimers Society UK - http://www.alzheimers.org.uk

Finding the Poetry in Dementia - https://www.agingcare.com/articles/finding-poetry-in-dementia-157152.htm

Only the Lonely - https://www.unforgettable.org/blog/only-the-lonely-dealing-with-loneliness-and-isolation-in-dementia/

Church or Jungle // The Great War

Even Church or Jungle's name carries within it a resignation to uncertainty, an unease that is reflected in the themes of his music. Throughout his performance of tracks from the album The Great War, Church or Jungle shared something of the state of mind from which they were generated - bouts of blackness that the label 'depression' seems too trivial to cover. He paints a picture of debilitating malaise, an intensely real emotional void that struck from nowhere to leave him feeling disconnected from both the external world and his internal capacity for feeling. He uses beat-boxing with live looping as a methodology for navigating the blackness and to reconnect with his internal world. Given the context of mental anguish I found that I didn’t want to consider the resulting tracks purely for their musicality: I was ever aware that this music was not the result of controlled reflection but a record of a raw place of human experience that is characteristically difficult to articulate.

Direct and straightforward beats are layered with a few textures and dressed with simple lyrics that cast off poetic pretension in favour of making the most direct appeal to the feeling of the moment that created them. The humility of its musical texture and lyrical tone are at once a symptom of the malaise and its cure. There is no hiding from the depression in these landscapes, but with them the artist has found a way to come face to face with the depression that has blighted him. Through his music he speaks with it on its own terms, treating it as a muse, and beginning to find a path through it.

Church or Jungle's music - like his moniker - appears to be at once an accurate portrayal of the thick jungle of depression and a place of sanctuary from it. (JL)

- Jim Lockey

Links Relevant to this Diagnosis:

You can buy The Great War from www.churchorjungle.co.uk with 50% of profits going to mental health charities.

For more outsider musicians using illness as a driver for their creative output see Daniel Johnston and Wesley Willis. 

Can Music Make You Sick? For more on the links between depression and the music industry visit http://musicanddepression.org.uk.

For more on live looping as a way of building a song watch this interview with another Folkestone creative Dan Addison https://youtu.be/xaX_k8uQXYw.

Get help with mental health concerns www.mind.org.uk.

Normal? Festival Launch // Cardboard Citizens

The theme of Normal? Festival of the Brain 2017 is neuroplasticity – the possibility of changing our habits and behaviours. Held in the heart of Folkestone’s Creative Quarter, this meeting of the arts and health demonstrates how people can overcome the stress of isolation and become empowered through participating in a community. Launching Normal?, Folkestone Fringe emphasised the importance of connection, whilst Living Words asked, ‘Is anyone ‘normal’, and what does that mean? How do we change the brain and the way we use it?

Quarterhouse Theatre is excited by community participation, ensuring that many people who live and work in Folkestone have been involved in ideas, planning and events for the festival. A roots network of formal groups and informal connections has also developed beyond the many officially organised events. Together these help residents to feel involved, valued, and empowered to share their passions and talents, and to seek help when needed. It’s not unusual for social media posts to ask ‘Folkestone friends’ for emergency child care or specialist performance equipment.

A prime example of collaborative approach to exploring community themes was the weekend’s first theatrical production, staged by Cardboard Citizens, a company who specialise in forum theatre. Their stories are linked in rooted experience, and often acted out by those with that experience. Audience members are invited to demonstrate how the protagonists could have acted differently to promote a better outcome to the situation portrayed, alongside and enriching the post-show discussion. The play, A Fresh Start, featured Folkestone actors telling the story of Clare. Clare moves to Folkestone with her young daughter, and faces the challenges of poor housing, an aggressive neighbour, work on a zero hours contract and the search for affordable child care. She finds it hard to assert herself and to ask for help and becomes increasingly overwhelmed, isolated and distressed to the point where her mental health seems at risk. Audience reaction sympathetically highlighted Clare’s ineffectual behaviour, stemming from her lack of assertiveness and self-empowerment – issues that are surely familiar to many women. It was helpful to share ideas on how we can take control, where the limits to our power over our behaviour are and how such situations are influenced by external forces.

As Folkestone residents, many of us have experienced the contrast between a sense of isolation and the empowering benefits of getting involved and gaining support from the local community and organisations. The town’s Creative Quarter provides an open, positive environment not only for artists but all interested local people. Clare could have benefited, for instance, from the Folkestone Women’s Forum, which helps women to be better informed of their rights and to foster personal growth and empowerment. She could have practiced assertiveness at the Improv Gym for drama improvisation or made friends in the area’s many welcoming, intimate bars and cafes where, following the Cheers ideal, everyone knows your name. (FW)

- Faith Warn

Links Relevant to This Diagnosis:

Psychological benefits of community

www.wright-house.com/psychology/sense-of-community.html

International Women’s Forum

http://www.iwforumuk.org

The Posh Club at Duckie

http://www.duckie.co.uk/events/the-posh-club

Folkestone Women’s Forum

www.folkestonewomensforum.com

Improv Gym

www.facebook.com/groups/improvgym

Cardboard Citizens

https://cardboardcitizens.org.uk

Hello Hair // Lisa Everest

Waiting on the sofa, I hear a woman explaining that she has avoided a haircut for two years. Half hidden beneath her mane, she explains her story to Lisa Everest of the Hello Hair pop up. We are at Normal? Festival of the Brain, exploring mental health and the wonders of the mind. Perhaps not the most expected location for a trim, but the Folkestone barber has set up in the Quarterhouse foyer for drop-ins. Finding myself mid-conversation with Lisa, opening up about the psychological history of choices behind my own mop, I suddenly understand exactly why she is here.

Lisa is incredibly easy to talk too. The perception of the hairdresser as synonymous to the therapist is a normative perspective from a female standpoint. The barber as therapist in male culture is also becoming a more widely recognised concept. Statistically speaking, 53% of men are more likely to talk to their barber about personal problems such as mental health. 71% of men rate their relationship with their barber as good or very good, in comparison to 59% who rate their relationship with their doctor as just average or even poor. With suicide now the single biggest killer of men under the age of 45 in the UK, this difference might be important.

Why then the barber, the hairdresser? Think of confession; the priest hidden behind a veil so that we are confident in revealing our innermost sins to a faceless entity. Now consider the hairdresser poised behind us; they often address us in the mirror, asking through the veil of our reflection how our day is going. And then we place our head in their hands.

Tom Chapman founded the Lions Barber Collective following the suicide of a close friend. His initiative ‘BarberTalk’ trains barbers on how to recognise the symptoms of mental illness and ways to engage with their male clientele on topics including mental health. Kent and Medway has a higher rate of male suicide than the national average, In 2014 there were 163 official suicides in Kent, of which 79% were men, with the majority of the men having reportedly no contact with mental health services prior to taking their lives

Perceived masculinity; the norms of male-ness as defined by society and the shame felt when standards are not met is often seen as a barrier to men seeking help. This safe space of the barber has clearly been embraced as an important development in our ability as a society to approach mental health. This unthreatening zone allows us to leave with our heads a little lighter.

I ask Lisa about how the weekend has gone. More than usual, she tells me, she has felt that there is almost an expectancy that her drop-ins are there to open up; having read the rationale for appearance of the pop-up, attendees are more willing to adopt the chair as a refuge. Of course, some have just come for a trim. (BB)

- Bex Bell

Links Relevant to This Diagnosis:

Hello Hair - https://www.facebook.com/hellohairfolkestone/

Lions Barbers Collective - https://www.facebook.com/TheLionsBarberCollective/

Getting Help with Depression from Your Barber

Releasing the Pressure Kent - Suicide Prevention Program

The Bluebeards Revenge - Mental Health and Barbering

Hannah Peel // Awake But Always Dreaming

When the first song commences, with Hannah Peel’s folky lilt rising above swirling synth riffs and retro dance beats, you might be forgiven for assuming you are in for a comfortable night of sweet pop. However, this music slowly peels back its many layers to reveal a flavour which can be sharp and raw.

The writing uses many musical styles at once, encompassing rock, folk, jazz, pop and dance, overlaid with an ethereal voice which belies the earthly content of her lyrics. Each song explores the ups and downs of her grandmother’s life with dementia, a theme which was sparked by a rare connection they made whilst singing a familiar song together. Hannah bends the sound of her violin with effects pedals, mixes recorded speech with live vocals and contrasts drum machine loops with Daisy Palmer’s live percussion, which is as fine and intricate as lace. They create a complex, distorted and often disorienting sound which mirrors her grandmother’s state of mind. It is a radical way of engaging Hannah’s younger audience with the themes of aging and memory loss.

The video, which runs on a loop behind the performers, flicks between the confusing snowstorm of a badly tuned cathode ray TV and the sharp loops of home videos taken from memorable times in her grandmother’s life: family picnics, holiday films and weddings. Both music and visuals mimic the haze of her grandmother’s memory, through which crystal clear moments of the past burst into view and are lost again.

Hannah explains how she has to hand-punch the rolls for the vintage music box she uses as accompaniment and I am reminded of the ‘craft’ that goes into making music, which seems to have been lost from our charts. Here in Kent we have our own musical craftsman, Henry Dagg, with whom I was not surprised to discover Hannah has collaborated in the past. They share a desire for spectacle on stage, not just people huddled over laptops pressing buttons, and a love of using old technology to create a new sound. As the music box sounds its final note, the roll drops to the floor like the last leaf of autumn signalling the onset of life’s winter.

After enjoying this display of skill, creativity and hard work, I am left wondering why is it still so unusual to see an all-women line up on the music stages of the UK? Perhaps because the industry is still so dominated by men? We need more initiatives like the PRSF Woman Make Music scheme to help drive talent like Hannah Peel beyond the fringes of the industry and place more women on our stages. (AB) 

- Anna Braithwaite

Links Relevant to this Diagnosis

Hannah Peel - http://www.hannahpeel.com

Sidney de Haan Research Centre - https://www.canterbury.ac.uk/health-and-wellbeing/sidney-de-haan-research-centre/

Experiences of Women in the Music Industry - Marie Claire

@ListenToLadies Podcast

Guardian - Music Industry Dominated by Men

Dementia Dialogue // Knitting for Well-being

In going along to Knitting For Well-being with Dementia Dialogue I had no idea what to expect, especially as I've not picked up a pair of needles in decades.  The group was small and informal, the wools were plentiful, and rooting around for matching needles set the session off to a playful start. We were a mix of older and younger people, with many of the older peeps having knitted before, but fallen out of the habit. It was led by Angelica Welzel-Connolly, who wanted to teach a Dutch version of 'casting on'. The rest of us were digging into our familiar pattern, if you'll pardon the pun, of doing it as we always had.  

Knitting is being adopted for dementia clients, and found helpful in a range of ways, especially in terms of its social engagement. This is a two-hour class that Angelica teaches to sufferers of Dementia and I can well see how that would connect a person to past memories, as it quickly plugged each of us who'd knitted before into our early memories from when we first began knitting. The participants were encouraged to make one of two bag styles. There was a wee one, as I made (big enough to fit a book of stamps or a few coins), or something a little larger that would carry a purse/phone/keys and would require a reinforced woollen handle.

What I hadn't expected was the connection I made with fellow participant, Sandra, where we encouraged each other every step of the way.  As our knitting grew so did our friendship. We veered off-pattern in cavalier fashion, and wandered off-topic reflecting on how as kids we'd been able to have the sorts of outdoor adventures children are no longer able to. We chatted over childhood teachers, Sandra remembering Mrs Mackenzie who taught knitting by rote, using the repetitive phrase; up, round, down, and off, until they were immersed in its hypnotic mantra. My mum taught me to knit at Nelly's Knee; observing her actions sitting by her side, a copycat method that carries through to now, where my how-tos are found on YouTube. Sandra and I laughed hysterically at times as we bonded over the needles. 

I can see how a small group number would work well with Angelica's clients.  It made me think of the Lewy Body Dementia condition my mum had, where this activity's informality, chatter, the stirring of dim and distant memories (real or imagined) within an informal atmosphere such as this would have suited her timid shyness rather well. And her arthritic fingers would easily be accommodated with methods I've seen demonstrated by local knitting guru, Debra Nash, who teaches finger and arm knitting in Folkestone. A highly inclusive approach. All in all a relaxing, big fun session, where we were left to our own devices, and every required material was at our disposal.  Shortly afterwards Sandra and I made a short video sporting our results: https://twitter.com/TSOTFringe/status/868148450722033665 (JU)

- Jane Unsworth

Links Relevant to this Diagnosis:

Dementia Dialogue

Ask the MD - FAQ on Lewy Body Dementia

Tatty Bunting - Folkestone Knitting Group

Alzheimers Society - Improvement Through Knitting

Cast On Stitches

Drugs Or Art? What's Best in Dementia Care?

At the start of this debate, we were invited to vote.  We could support both if we wanted, but Chair and KCC Commissioner Anne Tidmarsh invited a definite choice between them where possible. The majority of us chose art. Our speakers were Dr Timothy Rittman, neurologist, neuroscientist and researcher at Addenbrookes Hospital in Cambridge, and Reinhard Guss, a clinical psychologist in dementia at Kent and Medway Partnership Trust (KMPT), our local mental health NHS. Both gave short presentations.  

Doctors are divided into two types, quipped Rittman, butchers (surgeons) or drug pushers, of which he is the latter. The medical often favours an old-fashioned paternalistic approach, where the doctor talks the patient through history and symptoms to find a treatment plan. Curiously, the patients don’t seem to follow this text book model. There is no single test for dementia, of which there are over 100 types. Doctors must filter what they tell us or it would be too much to take on board at once. The focus is on the priorities of the patient and it’s reviewed regularly and adapted where needed. Drugs are not compulsory but may help slow the progress of the problem.  

Is dementia mental illness at all?  It tends to be divided into functional and organic, where the latter has a tangible physical cause, but the former effects functioning without a clear cause. Thomas Szasz makes the point that mental illness is not brain disease: as some dementias are shrinkage of the brain or a change in its working, does brain disease apply?  We could also ask if just because we have a disease/condition, does it have to be treated at all?

Guss made the point that these solutions are not exclusive, but work best in conjunction with each other. But most public investment is put into the medical model and drug therapy, and psychological interventions tend to be smaller, more localised projects. As well as offering the therapy itself, there is the benefit of social contact with others in the same situation, which itself creates a lasting bond.

We heard from several people with the diagnosis, and their experiences of both models of treatment. From all walks of life, they spoke as one about the importance of maintaining daily living, interests and sociability. For the neurologist, used to seeing his patients alone in a clinical setting, the communal nature of the psychological approach is its strength. Because of this though it’s difficult to prove its clinical effectiveness, which NICE (National Institute for Health and Care Excellence) use to judge value. Our final vote resulted in not quite so decisive a victory to art. (MB)

- Madlin Bee
 

Links Relevant to this Diagnosis:

Kent and Medway Partnership Trust - www.kmpt.nhs.uk

The Domino Study into the effects of drugs over extended time periods - www.ctn.mrc.ac.uk

Dementia National Helpline – 0300 222 1122

Dementia Action Alliance - www.demetiaaction.org.uk

Dementia Engagement and Empowerment Project - www.dementiavoices.org.uk

Shepway Volunteer Centre - www.volunteershepway.co.uk

Sunday Assembly

‘How does it feel?’ Bob Dylan asks us in Like a Rolling Stone. His lyrical journey through the human condition and the miracle of personal transformation is widely considered one of the ‘best’ and most popular songs of all time. Though written over 50 years ago this question is as pertinent as ever, given the perennial human drive to question ourselves, reflect on our personal story and consider what we might become. The Sunday Assembly, created by comedians Sanderson Jones and Pippa Evans, addresses this basic human need by offering something that is like church, but not church. It's non-religious and inclusive of all. It asks its audience to take an hour out of their month to 'Live Better', 'Help Often' and 'Wonder More', and develops this triumvirate of intention through collective singing, the spoken word and moments of quiet reflection. People connect with their neighbour through the power of a hug and a smile.

Carl Sagan said ‘we make our world significant by the courage of our questions and depth of our answers’ and I wonder whether this desire for self-exploration might be the invisible thread of connection within the room. Later in the day I talk to a number of Normal? festival goers about their experience of the event and am struck by the broad range of emotion felt by individuals within the audience. Some felt sadness and others joy. There was disappointment but also delight. A few people left in tears, others laughing. Many took the opportunity to extend their connection over tea and biscuits immediately after the Assembly. 

Within our small town of Folkestone there are already an almost infinite number of ways to shape and celebrate our human experience, be that through a religious or non-religious meeting of minds, through music, art, science, dance, performance, philosophical discussion or by spending time with the sea. The enduring reflection that I've taken from my hour with the Sunday Assembly is that actually we expand our world in some way every time we choose to connect, engage and celebrate. Every time we take time to feel our emotional response to a situation, no matter what shape these emotions take. That there is the collective, the us, and within that there is the unique authentic experience of the individual. 

Any route we choose to take is a valid one. Perhaps we can all find a way of doing each of these things right this very moment? How does that feel? (MJ)

- Melissa Jacob

Links Relevant to This Diagnosis:

Bob Dylan Like a Rolling Stone - https://bobdylan.com/songs/rolling-stone/

The Sunday Assembly - https://www.sundayassembly.com/

Notice you’re alright now - https://www.psychologytoday.com/blog/your-wise-brain/201106/notice-youre-alright-right-now

The epidemic of loneliness - https://www.psychologytoday.com/blog/connections/200905/epidemic-loneliness

Split Britches // Care Café

Come and share tea, cake, conversation and feeling cared for – all whilst cutting out paper. This was the intriguing invitation offered by Care Café at Normal?. The concept was created by Lois Weaver of Split Britches with the aim of fostering an ‘attitude of care in an uncaring world’ and allowing people to ‘gather their wits, thoughts and comrades in action’. The idea is to converse open heartedly whilst engaged in some practical activity that may also have an activist purpose, such as making badges or posters. With hands engaged, tongues and ideas may more easily be loosened into meaningful, caring conversation.

In a low key, low lit space filled with tables spread with gingham cloths, I headed for a group who had just called for a new participant and was quickly thrust into the realms of coupledom with companions of four different nationalities. I had held forth about my amateur theories on the deeper purpose of relationships for some time before discovering that one of our party was a professional couples therapist – but it quickly led into surprisingly personal and even metaphysical waters that made us all feel very bonded. Suddenly we were friends. At another table, we started making badges and discussing our lack of craft skills, then seamlessly moved on to talk about family, differences between siblings and daughters caring for elderly parents. When two new people joined us, we quickly got into the emotional triggers for cancer and the significance of sacred geometry. Now that is what I call meaningful conversation – especially when we took it right back to family love and nurturing through the generations.

Which returns to the bigger question of care in society. Care is a two way process and giving care can be as rewarding as receiving - but in Britain we have had a government that is modelling lack of care as acceptable action. Little wonder if we feel the world is uncaring when ideological austerity is systematically withdrawing resources for the care of sick, disabled and vulnerable people and undermining pensions policy. Uncertainty about the availability of income and professional care in later years leaves an ageing population feeling insecure about their future and hence disempowered.

Caring has traditionally been predominantly the province of women, associated with femininity. When society places the work of care at the bottom rung of value, reflected by low pay, zero hours contracts and diminishing resources, then a Care Café can certainly be seen as a political statement. Interesting that it has emerged from the world of arts and creativity as did Ken Loach’s powerful and influential film, I, Daniel Blake. My experience of Care Café was not only fulfilling and thought provoking but also magical and empowering. Every neighbourhood should have one.

- Faith Warn

LINKS RELEVANT TO THIS DIAGNOSIS:

Care Café community - https://www.facebook.com/cafeofcare/?fref=ts

Split Britches - http://www.split-britches.com

Life and films of Ken Loach - http://www.sixteenfilms.co.uk

The Impact of Austerity (Joseph Rowntree Foundation) - https://www.jrf.org.uk/society/austerity

Ageing Populations (RSA) - https://www.thersa.org/discover/publications-and-articles/rsa-blogs/2017/03/a-call-to-action---21st-century-enlightenment-and-ageing-popluation

 

Dr Gemma Beckley // Mindfulness

Mindfulness was a three day event led by Dr. Gemma Beckley (clinical psychologist and teacher of mindfulness and Transcendental Meditation) and her father, Colin (a recovering addict and founder of the TM trust). Throughout the weekend they gave brief synopses of mindfulness and T.M, and their positive effects on the brain and general mental wellbeing. MRI scans have shown that regular meditation increases the frontal cortex of the brain; this is the area that contains most of the dopamine sensitive neurons, controlling things like personality, decision making, planning and speech.

We are encouraged to visualise meditation as an ocean. Mindfulness is likened to surfing the waves, learning to cope with the swells of chaos and adversity. Mindfulness is one of the tools used to access TM. TM is like diving down into calm, still waters. We are given a raisin and guided through the process of mindful eating by first examining the fruit using all the senses. In doing so we are able to feast and feel sated by that single piece of fruit. I could see that having a mindful approach to eating might have a positive effect on dieting and obesity. Then we are taught mindful breathing - just breathing in and out, clearing our minds of all other thoughts. It is only about the breath, if the mind gets distracted then you bring it back to the breath. To end our session, we practise some simple yawning and stretching. We are reminded how babies stretch after long periods of sleep, as do animals, and see that this is the body’s way to connect with and reinvigorate the self.

Cynics might have us believe that meditation is ‘wacky’ and possibly dangerous. Only today in the I newspaper Richard Vaughan suggests it ‘can cause damage to children who have existing problems, while the focus on happiness can “pathologise” normal emotions like sadness’. However, during periods of extreme anxiety it is hard to see how focusing on the breath, calmly breathing in and out, clearing the mind of all but the breath, can have a detrimental effect. (SE)

- Sandra Elkins

Links relevant to this diagnosis:

The Brain Made Simple - http://brainmadesimple.com

NHS Mindfulness - http://www.nhs.uk/Conditions/stress-anxiety-depression/Pages/mindfulness.aspx

Mindfulness at the Mental Health Foundation - https://bemindful.co.uk

Transcendental Meditation - http://uk.tm.org/

 

Daniel Oliver // Max Dyspraxe

The Wellcome Collection website lets you know that Daniel Oliver's Weird Séances come with a 16+ suitability notice. As everyone's getting settled into their seats for his talk at Normal? Festival of the Brain, an on-screen slide tells us that this spin-off, Max Dyspraxe, has been adapted in two ways – he'll not be wielding an axe, or getting his kit off. This is reiterated by the promoter, Susanna Howard.

Then Oliver arrives into the performance space wearing head-to-toe army camouflage netting, wielding an axe. He reads his own slide, walks off stage, walks back on, discards axe. It's the first laugh and we're off. Unaware of his work, the premise of Oliver's deconstructionist event begins it's unravelling by hurtling into audience participation, where the first 'victim' is brought up to hold a branch. Later on, we learn that bit was arranged beforehand. This is swiftly followed by the identification of someone else who Oliver wants to 'play with'. She winds up wearing his army camouflage netting in a coat-like fashion for the duration.

Oliver’s Weird Séances are described online as:

"raucously, roughly layered participatory performances about participatory performance. They haphazardly emerge from an unabashed embracing of Daniel’s Dyspraxia. Each show is clunkily crow-barred into its site and context - re-jigged, added to, undone and perverted, so that no two performances are the same."

Next he hones in on another participant who arrives on stage as Tree Two. He fails to remember her name time and again, as I am now, although she continues to prompt him with it. But he reminds us it's part of his condition, and although it's hard to know whether it's intentional it's funny either way. Tree Two plays along to a point but is awk-wood at times. As the show progresses we're lured into a dark pantomime of his explaining the plot as it unfolds, hilarious in its awkward simplicity.  We're encouraged to imagine the scene in the future where the audience have been slaughtered by said axe. He sets the scene in the Awk-woods. We are, Oliver tells us, in some woods in the future looking back on a traumatic incident that occurred in this space, during this show. The trauma of the event is underlined by Tree's Two's loss of the 'friend' she came to the show with. Tree Two names her Jennifer, which in this case is made all the funnier because this lady came to the show on her own. Not knowing anyone either, she's made to identify and name the person she imagines she came along with, hence the birth of Jennifer. Once pointed out she is given some plastic sheeting to wear.

Dr Daniel Oliver didn't receive his Dyspraxia diagnosis until embarking on a PhD after it was suggested he be tested. And the show is made all the more charming and poignant when Oliver meets a similarly dyspraxic audience member of around 13. He’s encouraged to interject, and whatever he comes up with is warmly welcomed as Oliver stops the show to engage. It's a verbal hug that invites him to be himself, despite how others may perceive him as a result of his condition. As an audience we love, hold and encourage both. As described the story unravels and contains much audience participation; awkwardness, noise, people playing instruments, and much laughter.

After the programme finishes I go over to ask Oliver how he thinks he would have fared to have his diagnosis as early as Jack's, because I wonder at the effect these labels place on kids. Oliver says it's a bit of a double-edged sword as he believes now that he developed some savvy strategies to deal with his condition when younger that went on to serve him, where being diagnosed has made it an easy cop-out on occasion to fall back on the Dyspraxia. This show was bright, charming, very funny, inclusive, and educational. I walked away having peered into the window of why a Dyspraxic may feel they don't always fit in with the rest of the world. (JU)

- Jane Unsworth

Links relevant to this diagnosis:

Weird seance - https://wellcomecollection.org/events/daniel-oliver-weird-seance

Symptoms of Dyspraxia - http://dyspraxiafoundation.org.uk/dyspraxia-children/symptoms/

What is Neurodiversity? - https://www.psychologytoday.com/blog/my-life-aspergers/201310/what-is-neurodiversity

Firms Seeking Neurodiversity - https://venturebeat.com/2017/05/07/software-firms-are-actively-seeking-neurodiverse-employees/

UnitedMind // Laughter Workshop

Always laugh when you can. It is cheap medicine. ⎯ Lord Byron

I am lying on the floor, flat on my back, my belly convulsing. To put it scientifically, I am in the midst of a gelotoleptic fit. Or, slightly less dramatically, I am laughing. I have no clue what I am laughing at. It’s a Sunday afternoon and I have just spent the last hour having a chuckle with total strangers at a Laughter Workshop. Lottke Mikkelsen of UnitedMind is a certified Laughter Yoga Leader. She spends an hour with us, putting us through a series of gelastic gymnastics to get our funny bones engaged and our comfort zone well and truly ousted. 

Humour therapy uses the physiological process of laughter to relieve physical and emotional stress. This is not a modern phenomenon. Dr William Fry became, in 1964, the first self-proclaimed ‘Gelotologist’; an expert in laughter. Norman Cousins is infamous in the medical world for his claim that the healing power of laughter therapy did for him what traditional medicine could not and effectively cured him of a severe degenerative disease. The argument is that your body cannot distinguish between real and fake laughter, ergo the benefits of fake laughter are the same as that of the genuine. Laughter reduces levels of stress hormones, suppressing our fight-or-flight response and decreasing our blood pressure.

After the workshop I demonstrate one of the tasks to my partner and he remarks that I look a little creepy. I probably do. Staring deeply into strangers’ eyes as you try to laugh out loud in a way that resembles a greeting is not your conventional weekend activity. I think of the stigma attached to laughing. How we become aware of the right and wrong way to laugh (pig snorting=no) and how laughter can be both a social bonding tool and a tool of punishment and social correction. Make a fool of yourself in front of your friends, be subject to their mockery, and it is unlikely you will make the same mistake again. Equally, we actively seek out comic relief, willing to fork out in exchange for the humour of our favourite comedians.

Lottke tells us that she makes a phone call three times a day to spend 10 minutes laughing with her fellow devotees. And so we spend the session running through exercises of faux laughter. Our final exercise requires us to lie on the floor and relax, letting the laughter flow if we feel it. There is silence for a few seconds, and then someone begins to chuckle. It’s a genuine, heartfelt, snorting laugh. It’s hard to resist, and soon I am laughing so hard that my sides are hurting. I’m no scientist, but it feels good. (BB)

- Bex Bell

Links relevant to this diagnosis:

 A Laughter/Pain Case Study - http://www.laughteronlineuniversity.com/norman-cousins-a-laughterpain-case-study/

Laughter Yoga - https://www.youtube.com/watch?v=lGNOF8DVIPQ

Norman Cousins - https://www.youtube.com/watch?v=--CW46nYRsw#action=share

Inside the Mind: Laughter - http://science.howstuffworks.com/life/inside-the-mind/emotions/laughter7.htm

Stacy Makishi // Vespertime

In the opening moments of Vespertime the audience is introduced to a number of unusual words. Some are from the Hawaii of Makishi's birth, others (like vesper) are English words with a little known etymology. Other words are familiar but are given mysterious prophetic importance through the lens of Makishi's framing of them within the story she's spinning. So, what is Vespertime? Stacy tells us that the word means evening prayers, a sermon, or could even euphemistically refer to intercourse. The aim of her performance is therefore laid out from the start; Vespertime is intended to be an edifying message and a shared euphoric moment.

The gospel contained in this work is a call to consider what drives our actions in life. It is a plea to turn from the desire for revenge and the shame of regret and choose instead an attitude of generosity. It's a response to every limiting impulse with a cry for 'more'! There are a number of ways in which Makishi's Vespertime resembles a religious service, like the moments of communal singing with Tracy Chapman standing in for traditional hymns. Our scriptures for the evening come not from the Bible, but the movies of Demi Moore. The evening is peppered with pop-culture references that stand-in for the shared language of a religious gathering, and like a good preacher Makishi weaves in illustrations from her own life and manages to keep some sense of a larger truth at the centre of it.

One of Vespertime's core references is Melville's Moby Dick. The novel stands in directly for a number of things during the show. Yet also within the idea of this giant white whale (this object of obsession that is unknowable, unobtainable and constantly hidden by the chaos of the ocean), is a picture of how the idea of God is perceived in the show.

In Vespertime, coincidences and forced correlations between events are ascribed portentous significance. Makishi presents a worldview in which everything that happens potentially contains a spiritual message that wants to be decoded. Vespertime is a carefully constructed work that brings together seemingly disparate references to create a meaningful cohesive whole. But Makishi doesn't claim ownership of this careful construction, she presents herself as a channel for something larger, some muse that comes from outside. As member of her audience (or congregation, or pod) I left feeling uplifted, but I was also left to consider just where the work came from, was its source something within Makishi herself as the artist? Or was it, as she claimed, the influence of some outside voice, some muse, or God? Is reading meaning into our circumstances something that is perceived purely in our minds, or is it something more? And if it helps us navigate the real world is the source of that meaning significant? (JL)

- Jim Lockey

LINKS RELEVANT TO THIS DIAGNOSIS:

Stacy Makishi - www.stacymakishi.co.uk

More Live Art and Inner Voices - https://www.theguardian.com/stage/2009/dec/11/kim-noble-will-die-review

Madness, creativity and religious experience – https://www.psychologytoday.com/blog/hide-and-seek/201204/madness-creativity-and-religious-experience

The first book written in English by a female mystic about her experiences of hearing the voice of God - Revelations of Divine Love by Julian of Norwich (https://en.wikipedia.org/wiki/Revelations_of_Divine_Love)