Dementia Friends

Before the Session:

Me: Nah! I really don’t think I should go to any of the dementia sessions.

Brave Me: Why not?

Me: I have my issues and I’m afraid I’ll freak out.

Brave Me: Wimp! Given everything you’ve been through, you should be able to deal with anything these days. Go! Keep quiet when you’re there and then find a corner afterwards to blub in.

The session was led by Dementia Friends, and they began by asking for words which come to mind when we hear the word ‘Dementia’. Failed memory, confusion, paranoia, losing things and personality changes came out. I thought it strange that nobody mentioned loss and fear.

The leaders gave us the five main messages which Dementia Friends want to get across:

1. Dementia is not a natural part of old age. One in fourteen of over 65s have dementia but some are much younger.
2. Dementia is a disease of the brain. It affects everyone differently. There are over 100 different types of dementia.
3. Dementia is not just about losing memory. It also affects motor skills, sequencing, loss of inhibition, judging distance, perception.
4. It is possible to live well with it.
5. There is more to the person than the dementia.

As a description of dementia, Carole gave us the analogy of a person as a bookcase holding books from every memory of her life, with the most recent memories on the top shelf and her childhood ones at the bottom. As the bookcase begins to rock and topple, the books begin to fall off, those from the top shelf (recent events) dropping first. Imagine that most of the books have disappeared while the person could be living on the shelf containing the 50s.  What would she not know about? Not just microwaves, smart phones and videos. Would she know what a teabag is, or what it’s for? How would she make a cup of tea? Should you make it for her, or does this undermine her sense of independence? Perhaps the real way to help her is to buy tea rather than teabags.

One of the most heartening pieces of information for me, as a great believer in the power of language, was that it is no longer acceptable to refer to ‘dementia sufferers’. They are ‘people with dementia’. This reflects the way in which changing the term ‘rape victims’ to ‘rape survivors’ enlightens the public and gives strength to those who have been raped. It is entirely positive, as was this session. The exercises illustrated how perceptions of dementia vary as widely as the people who have these perceptions.

After the Session:

Other People: Are you ok?

Me: (sniff) Sure. 

Other People: No, you’re not. What happened? Was it bad? 

Me: No, it was bloody good. But I should have listened to myself. There were too many connections. Too many contacts. Too many familiar moments. I shouldn’t have gone. I was right. It was scary. I’ll get some wine and forget about it.

Other People: Not a good idea! 

Me: Tough!

- Joy Pascoe

Links relevant to this diagnosis:

Dementia Friends

Symptoms of Dementia - Alzheimers Disease International

Support - Dementia UK

GENERATION ZERO // Lamphouse Theatre

In a world increasingly mediated and sustained through ever more subtle technologies, it seems appropriate that the protagonists of Generation Zero meet through an online dating app. Their blossoming romance develops through a particular set of millennial anxieties and rituals. The strife at an unresponded message with a read receipt, the bonding over twee children's literature, the small unfoldings of mutual appreciations and desires.

But it’s precisely in the anxieties not shared and the concerns not reciprocated that creates the drama. One has deep ideological convictions about environmental activism. The other sees them as both distraction and oddity. The honeymoon harmony starts to wear off under the pressure of sincerity rubbing up against comfortable apathy.

While the play touches on the notional ideas of surveillance, the disruptive powers of technology and the sheer scale of damage humans wreak on their natural environment, it pales against the backdrop of a much more human scaled drama.

 Throughout, it’s the conversation regarding what it truly means to communicate with those you profess to love, with all of the minor, low-grade incomprehensions, the idea of speaking at, not to, the willful stuffing of ears against opposing viewpoints and the way these lead to all sorts of unmeant betrayals. The underlying irony is that what the audience hears is what the protagonists can’t, that all of the noise and concern that they treat each other and their various worthy causes is no substitute for actual communication.

- FG

Generation Zero played at ZOO Southside - https://tickets.edfringe.com/whats-on/generation-zero

Competitive effects of technology diffusion-  http://www.jstor.org/stable/1251581

The New Rhetoric of Environmental Activism- https://books.google.co.uk/books?hl=en&lr=&id=1tCUQXgAJhoC&oi=fnd&pg=PP2&dq=environmental+activism+spying&ots=ed06eGOT8T&sig=SjLemW70cVLONo3d7bP80iDnR2I#v=onepage&q=environmental%20activism%20spying&f=false

Undercover police spied on activists- https://www.theguardian.com/uk-news/2016/mar/09/undercover-uk-police-spy-apologises-after-being-tracked-down-by-woman-he-deceived

Womens Environment Network- http://www.wen.org.uk/

On the Social Media Ideology- http://www.e-flux.com/journal/on-the-social-media-ideology/

TRAVESTY // Fight in the Dog

Travesty is a play dealing with transitions. From one state of life to the next. Between innocence and ageing masquerading as experience. From a romantic relationships move from cradle to grave. From early 20s insouciance to the creeping fear that this might be all you’ve got. From dissatisfaction to, well, what exactly?

Both Lydia Larsen and Pierro Niel-Mee are two typical-ish archetypes. She- playing the older, acerbic, disillusioned (and male) teacher Ben- is full of a coiled tension hiding behind an aloofly ironic exterior. He- playing middle-class (and female) PR executive Anna- is full of easy first-flush of youth optimism. Their relationship is charted over four acts, from enraptured beginnings to fraught, bitter end.

It’s a play that creates a certain sense of frisson in the audience by subverting lazy gender norms, not by doing anything wildly radical, but by simply by inverting them. There’s the possessive slaps that Larsen gives Niel-Mee on the behind. There’s the shamed covering of the male, not female nipple. And then there’s the language.

What is ‘female’ language? For that matter, what is ‘male’ language? It’s not so much a question that’s taken up, but rather a set of cliched assumptions played out for comic effect. Anna, at points, both sly and circumlocutory and we’re invited to laugh at our smug assumptions because it’s coming out of a man's body. Ben is, at points, gruff and absurdly affected. Again, we are invited to laugh because it’s a set of language and gestures that we aren’t primed to ‘expect’ coming from a certain kind of body.

What keeps the work from merely reinforcing these stereotypes is that the writing is good enough to subtly acknowledge that we as an audience are having our own assumptions played with and teased out. Not only is Travesty a play explicitly dealing with all of the manifold day-to-day compromises we make to sustain, or break, relationships; it’s a play that forces you to acknowledge the compromises we make in communicating through our bodies and our imperfect language.

- FG

Travesty played at Assembly George Square Studios - https://tickets.edfringe.com/whats-on/travesty

A Short Introductory Essay on Judith Butler- http://www.theory.org.uk/ctr-butl.htm

How to Shake Up Gender Norms- http://time.com/3672297/future-gender-norms/ 

Performative Acts and Gender Constitution- http://facweb.northseattle.edu/mjacobson/SPECIAL%20TOPICS%20IN%20PSYCHOLOGY/Subjectivity/PerformativeActs.pdf

The Non-Verbal Semantics of Power & Gender- http://link.springer.com/chapter/10.1007/978-1-4612-5106-4_8#page-1

PLAYING WITH POETRY // DeafFirefly aka Donna Williams

‘Poetry in motion’ is a phrase that's most often used as a cliche, one that’s used to describe fast cars or effortlessly talented dancers. But it’s also an entirely literal description of poet Donna William’s work. Her performance ‘Playing With Poetry’ explores the interplay between English and BSL poetry. Her first poems are spoken in English. Then, she performs them in BSL, her movements bringing tenderness and lyricism

Williams used to perform poems only in BSL, but as she reports, she became frustrated with the way that audience members would praise her poems as “beautiful”, but when she asked them what they thought of the ideas, they’d admit they hadn’t understood a word.

This performance opens with poems performed in BSL, and simultaneously translated into the English language by interpreters. Sometimes, there’s a disjunct between the two, as a hugely expressive stream of movements is interpreted as only a few words of spoken English. And there’s an emotional depth to her BSL poems that translation can’t always convey, either. Her poem about adopting a cat involves a series of hugely expressive movements, as she becomes a series of scared, bold, and sleepy pets at Battersea Dogs Home. When she finally finds her chosen pet - a deaf cat - her caress has a warmth that words can’t convey.

The lyricism of William’s work conveys the closeness of BSL to other physical methods of communication, like dance or mime. Often it's tender, and soothing. But it can also be intensely political.

One of her angriest poems talks about the experience of being shut out of the deaf world, by a family that were desperate for her communicate in spoken English, however much she struggled with it. Her decision to learn BSL at university is experienced as a headrush, an emotionally intense discovery of community she’d needed her whole life.

Her performance communicates the richness of BSL, and by showing its vast expressive potential she illustrates how much she’s gained by becoming bilingual in English and BSL. And her final poem, performed with interpretation, has a beauty that suggests how much is lost by pressuring deaf people to participate in a hearing world.

- Alice Saville

Deaffirely: Playing With Poetry was on at Spotlites from 11-12 August. http://www.spotlites.co.uk/edfringe-deaffirefly-16.shtml

Donna Williams' website: https://deaffirefly.com/

Tabith Laksimi on the importance of BSL as a second language: http://limpingchicken.com/2014/10/27/tabitha-laksimi-the-uk-needs-bsl-as-a-second-language-heres-why/

SPOONFACE STEINBURG // Top Right Theatre

Spoonface knows that people in operas die beautifully and she wants to die beautifully too. Diagnosed with autism, and later terminal cancer, the child walks along silver linings in this hour-long monologue. Tackling the difficulties of development disabilities and terminal illness, Spoonface’s optimism never falters, as the backing track of Puccini’s ‘O Mio Babbino Caro’ lulls us into a romantic view of death.

More than 1 in 100 people in the UK live with autism, and they often have difficulty communicating and reading emotions. Because of this, Spoonface’s language is simple. Linear trains of thought are very clearly laid out, in order to prevent the world from being overwhelming.

In the periphery of Spoonface’s monologue is recognition of the difficulty of caring for an autistic child and how that is part of the reason for her parents’ split. While the common claim that 80% of autism families divorce was found to be false in a recent study, having an autistic child without doubt puts extra pressure on a couple. David Mitchell writes about telling people his child’s diagnosis. ‘The replies come quickly but read awkwardly: condolences are inappropriate in the absence of a corpse, and there aren't any So Sorry Your Offspring Has Turned Out Autistic e-cards.’

Named after her unusually rotund face, Spoonface tells us about her short life. Lee Hall, most famous for Billy Elliot, wrote this monologue for radio in 1997 but here Sasha Brooks performs as Spoonface in pyjamas, radiating innocence and vulnerability. Though covering desperately sad topics, this monologue tries to be optimistic, picking up on the positive parts of this life dotted with misfortune. Spoonface values her individuality, saying, ‘to be different is to be who you are’. Mitchell, too, is sympathetic to this idea, noting that gradually you discover that each child with autism ‘possesses its own singular beauty, its own life-enriching experiences.’

- KW

Spoonface Steinburg played at theSpace @ Jury's Inn through August 27 - https://tickets.edfringe.com/whats-on/spoonface-steinberg

Information about autism http://www.autism.org.uk/about/what-is/asd.aspx##Prevalence

A review of the original radio play http://www.independent.co.uk/arts-entertainment/dont-be-afraid-of-spoonface-1165152.html

Autism spectrum disorder http://www.nhs.uk/conditions/autistic-spectrum-disorder/pages/introduction.aspx

Autism’s effect on a family http://www.aamft.org/members/familytherapyresources/articles/08_FTM_3_18_22.pdf

Divorce rates of parents with autistic children http://www.telegraph.co.uk/news/health/children/7926161/Parents-of-autistic-children-more-likely-to-divorce.html

David Mitchell: Learning to live with my son’s autism https://www.theguardian.com/society/2013/jun/29/david-mitchell-my-sons-autism

4D CINEMA // Mamoru Iriguchi

Mamoru Iriguchi’s moving planes of flat projection are a visual signature, a recurring technique constructed through a wacky series of contraptions that disguise their sophistication. In 4D Cinema the footage projected onto them are used to question time itself, the ability of a subject to define their own home and the biographic responsibilities of the performer and audience. The nature of memory is as much its subject as Marlene Dietrich, both in what the audience remember of themselves as they were fifty minutes younger, and in thoughts of how your memory will survive after death.

It is apt that this questioning of memory happens through a screen. There is constant media speculation on the consequences of modern humanity’s deferral of the responsibility of remembering onto external devices. No longer do our brains contain sets of memorised phone numbers or addresses, they're filed away as discrete pieces of digital information accessed through a screen or a cloud. Iriguchi’s work highlights the risk that this trust of the screen might come to dominate our own memories. Believable biographical material is delivered through screen and authoritative speech, causing a brief cognitive dissonance with my vaguely recalled pop cultural history. Was what was said about Dietrich true, whether played forwards or back? Can I trust my disbelief without a surreptitious Google?

As the performance finishes, the last thing the audience see is themselves reversed in moving image, a playback of themselves entering unaware into the space. It’s a riff on self-perception and its communication, on the marketing of ourselves as a central concern, the modus operandi of social media and advertising, subcultures, clothing and rep. Like the mirror stage of Lacanian psychoanalysis, the point at which a toddler locates themselves in the image in the mirror, video documentation shows the subject to itself as something others see. In 4D Cinema our image is reflected back to a later version of ourselves, through an unaware entrance, and the ramblings of a reticent historical subject.

- LC

Mamoru Iriguchi - http://www.iriguchi.co.uk/About.html

How the Internet Inhibits Short-Term Memory -http://www.medicaldaily.com/information-overload-how-internet-inhibits-short-term-memory-257580

Digital Amnesia: Real or Not? -http://www.techtimes.com/articles/65431/20150709/digital-amnesia-spreading-due-to-internet-and-smartphone-use-or-crass-marketing-ploy.htm

Metaperceptions: How Do You See Yourself? -https://www.psychologytoday.com/articles/200505/metaperceptions-how-do-you-see-yourself

The Mirror Stage –http://www.lacanonline.com/index/2010/09/what-does-lacan-say-about-the-mirror-stage-part-i/

Mamoru Iriguchi/Lewis Church Interview (Exeunt) - http://exeuntmagazine.com/features/between-the-genres/

OUTSIDE THE BOX - A LIVE SHOW ABOUT DEATH / Liz Rothschild

“Talking about sex doesn’t make you pregnant, talking about death doesn’t make you die.” This quote from Jane Duncan Rogers appears on the flyer for Liz Rothschild’s thought-provoking and unexpectedly jolly show about death. Although the subject matter is literally morbid and Rothschild’s description of washing the body of her dead mother moved me to tears, it’s hard not to smile while watching someone weave their own wicker coffin to the strains of Monty Python’s Always Look on the Bright Side of Life – apparently the UK’s top choice of funeral song.
 
Rothschild is a funeral celebrant who runs a ‘green’ burial ground and is full of lively passion about death. Through personal stories she exposes the taboos in our society, explaining how death has become disconnected from family, community and wider society in our modern age.  She points out that every town will have NCT childbirth groups, but where are the death groups? After all, we’re all born, but we all die too. Most of the audience had heard of Braxton Hicks – the ‘practice’ contractions that start towards the end of pregnancy – yet only two people were familiar with Cheyne-Stokes, the changed pattern of breathing that can signify the end is near.
 
She also highlights the shocking fact that around 70 per cent of us will die without leaving a will or a less formal letter of wishes. This can mean that people end up without the burial they would have wanted, and even leave funeral costs unplanned for and unpaid. At the same time, we’re warned about the ‘death industry’, with some unscrupulous souls willing to exploit a lucrative and reliable customer base plagued with grief and guilt. The show certainly prompted me to think about the plans for my own demise (or rather, the current total lack of them) and realise that it’s a subject I’ve never broached with any of my family.
 
Medical science still cannot heal those who are finally dying, and at some point it will be our time to go. Although funerals are for the living rather than the dead, out of respect for human dignity and agency, we should be starting conversations about death right now. (KA)
 
Outside The Box - A Live Show About Death is on at 11.50 at Summerhall until August 21st. Relaxed Performances - https://tickets.edfringe.com/whats-on/outside-the-box-a-live-show-about-death

More on the Death on the Fringe series: https://deathonthefringe.wordpress.com/

Compassion in Dying: http://compassionindying.org.uk/

The DeathCafe movement, running events aiming to encourage public conversations about death: http://deathcafe.com/

The Good Funeral Guide: http://www.goodfuneralguide.co.uk/

Final Fling – advice on life and death decisions as well as planning tools: https://www.finalfling.com/

Hospice UK, for information about hospice care at the end of life: https://www.hospiceuk.org/

Living Well Dying Well train doulas (companions) for the dying and run public and professional courses http://www.lwdwtraining.uk/

Natural Death Centre, providing free advice about death and burial: http://naturaldeath.org.uk/

Research paper on public attitudes to death, dying and bereavement from Nottingham University: https://www.nottingham.ac.uk/research/groups/srcc/documents/projects/srcc-project-summary-public-attitudes.pdf

Cheyne-Stokes breathing: https://en.wikipedia.org/wiki/Cheyne%E2%80%93Stokes_respiration