‘It’s All About Pianos’: Stories & ACT Through Chronic Illness & Hidden Disability

In 1982, South African state TV was just 6 years old. So I was able to watch (as a youth) some ‘Top of the Pops’ clips that got sent our way, which had managed to avoid the Equity ban on (mostly British) TV shows being screened in apartheid South Africa. One ‘Top of the Pops’ clip in particular stood out for me, so that it is etched in my mind even today. It was a joint rendition of ‘Ebony and Ivory’ by Stevie Wonder and Paul McCartney, conducting a duet atop a giant piano with black and white keys. (At the time, the black presence on SATV was minimal, being pre ‘Shaka Zulu’ days with Henry Cele, by several years.)

But it wasn’t Stevie Wonder that had caught my attention. The awkward looking white South African presenter would add his ‘hip’ comments into the mix at the end, showing us all what a ‘progressive’ society we really were. “Isn’t that wonderful?” he said after the Wonder/McCartney song ended, “That they can write a song all about the piano!”

WTF? Did I just hear that? Did you really just say what you said? I stared hard at the presenter, who smiled back with silent but deadly earnestness – and not the slightest trace of either irony or humour. (The song was eventually banned for a while in SA in – yes, you guessed it – 1984!)

Time passed – even apartheid too, eventually.

But, through it all, subtext has remained key! Narratives in all media contain implicit underlying meanings, whether from dominant or marginalised ideas and discourses. Disability is still very much a marginalised space, a place for some to avoid – or even joke about – although this, at least, is thankfully changing. One worthy project which aims to put ‘disability’ and its future centre space is the ‘Accessing the Future’ initiative being driven by The Future Fire and Kathryn Allan: https://www.indiegogo.com/projects/accessing-the-future

To publicise the funding initiative for a Speculative Fiction anthology which has ‘Disability’ at the heart of its theme, there is a linked Blog Hop: http://djibrilalayad.blogspot.co.uk/2014/08/blog-hop-accessing-future-fiction.html Look out, too, for Guest Posts on The Future Fire, which have included Tade Thompson: http://djibrilalayad.blogspot.co.uk/2014/08/guest-post-quis-custodiet-ipsos-custodes.html

But remember the latent subtext involved in representation – which is why they are interested in an ‘intersectional’ approach – which looks critically at the notion of disability as a social construct and not as a fixed (essentialist) medical entity (Shawl, 2013). And, if you’re looking to write for the anthology, bear in mind their helpful questions and guidance – plus beware of dominant discourse stereotyping!

As for me, I had a ‘biographical disruption’ in my own self-narrative (Bury, 2001), i.e. chronic and ongoing encounters with two incurable illnesses (Meniere’s Disease and CP/CPPS – neither terminal), that eventually necessitated an incorporation of ‘disability’ into my own self-identification.

At first I thought this would mean the end of my writing, given it is on top of a day job. But my passion to write remains kindled, although I have learned to slow down and regulate my activity, to conserve my energies – and so I write less, through pain, but with a little more care…Still, I write.

For anyone interested, there is a fascinating book by Arthur Frank (1995) called ‘The Wounded Storyteller’ , which addresses how people try and create narrative meaning from the chaos of illness. Another source of help has been the ACT model, (i.e. Acceptance and Commitment Therapy), which has been seen as part of the ‘third wave of behavioural psychotherapies’: http://contextualscience.org/podcast

‘Mindfulness’ and Acceptance (rather than denial or avoidance of) illness and pain has been heralded as important factors in learning to cope with many conditions (Kabat-Zinn, 1990; Khoury et. al., 2013) I have struggled a little with this notion – how can you completely ‘accept’ something which is inherently unpleasant? The recent book by Ray Owens (2014) was a great help – entitled ‘Living with the Enemy,’ it adopts a pragmatic approach that acceptance also acknowledges a tension in the relationship, given it is hard to completely ‘befriend’ illness and pain. But also of importance for me is that the book moves away from a dominant discourse around ‘battles’ and ‘conquering’ illness with ‘bravery’. (Presumably then, those who ‘fail’ to force their illness away and regain health are not ‘brave’ enough?) These contain (Western) individualistic notions that put the person as the main instrument of their life, actively shaping and changing their fate by ‘defeating’ the Dragon of Illness.

I am not brave. Illness has largely ‘defeated’ me, as some might say, but I continue to write, both as part of acceptance and resistance. And I have realised my strength actually lies in the relationships that envelop me – it is my family that sustains and enriches me. I am lucky indeed! And, given my illness and pain is largely invisible to others, I have learned to let them know, as and when appropriate – and thus work modifications have kept me working too. It’s a cool modification too – a standing desk, given sitting exacerbates my pelvic pain. (The novelist Tim Parks managed to beautifully steer his way out of a similar illness, seemingly through meditation – see his book ‘Teach Us To Sit Still’ below.)

And that’s the other part of the ACT Model – the essential partner to Acceptance – Commitment. Commitment means engaging with life, despite illness and pain, sometimes even because of it. It involves becoming aware of the values that make your life worth living – and pursuing them. Writing is part of who I am and what I have learned to recommit to – and there are many other, better writers out there who continue to write, despite significant impediments and ‘disability’– I have listed just a few below. (Jay Lake, recently deceased, was obviously a case in point, writing so brilliantly, through so much…)

So please support the drive to materialise an anthology of ‘Accessing the Future’ (for us all.)

And if you do come across any of my other (fictional) writing, please remember – It’s All About Pianos!

***

To support ‘ACCESSING THE FUTURE’ go here: https://www.indiegogo.com/projects/accessing-the-future

A ‘disability’ story I loved: Carole McDonnell’s ‘Lingua Franca‘ in Hopkinson and Mehan (2004) So Long Been Dreaming: PostColonial Science Fiction and Fantasy. Arsenal Pulp Press.

About being authentic with representations of Mental Health in SF (Tade Thompson) go here: http://tadethompson.wordpress.com/2014/08/20/mental-illness-primer-for-speculative-fiction-creators-contents-page/

To read about some SF/F writers experiences with disability and illness:

Tiah Beautement – http://tiahbeautement.bookslive.co.za/blog/2014/02/10/on-better/

Eugie Foster– Cancer http://www.eugiefoster.com/at/coping-with-cancer – And Please Buy her wonderful short fiction!!

Nicola Griffith – http://asknicola.blogspot.co.uk/2014/08/my-health.html

Nalo Hopkinson: http://www.lightspeedmagazine.com/nonfiction/interview-nalo-hopkinson/

Kameron Hurley: http://www.kameronhurley.com/when-power-fades/

Jay Lake Last Plane to Heaven: The Final Collection http://www.jlake.com/2014/08/27/last-plane-to-heaven-the-final-collection/

Shweta Narayan – http://shweta-narayan.livejournal.com/198520.html

Nisi Shawl: http://blog.seattleacupuncture.com/i-am-strong-im-invisible-by-nisi-shawl

So – Go. Read – and Support!

References:

Khoury, B., Lecomte, T., Fortin, G., Masse, M., & Therien, P., Bouchard, V., Chapleau M., Paquin K. & Hofmann, S. (2013) Mindfulness-based therapy: A comprehensive meta-analysis. Clinical Psychology Review 33, 763–771.

Bury, M. (2001) Illness narratives: Fact or fiction? Sociology of Health & Illness, 23(3), 263-285

Frank, A. (1995) The Wounded Storyteller. University of Chicago Press.

Kabat-Zinn, J. (1990) Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness. Bantam Dell.

Kleinman, A. (1988)The Illness Narratives. Basic Books, New York.

Owen, R. (2014) Living with the Enemy: Coping with the stress of chronic illness using CBT, mindfulness and acceptance. Routledge.

Parks, T. (2011) Teach Us to Sit Still: A Sceptic’s Search for Health and Healing.

Shawl, N. (2013) Invisible Inks: On Black SF Authors and Disability,” in WisCon Chronicles 7, “Shattering Ableist Narratives”. Ed. JoSelle Vanderhooft, from Aqueduct Press.

Nick Wood (September/October 2014)