The Sticks and Stones of Becoming ‘Disabled’ by Nick Wood
‘Sticks and stones may break my bones,
… But names will never harm me.’
Rhymes and resonances:
This traditional English children’s rhyme, used down the ages as a retort to disempower playground name-calling, was apparently first coined by William Kinglakee (1809-1891). In his book EOTHEN(1844), Kinglake actually referred to ‘golden sticks and stones.’ EOTHEN was a recording of Kinglake’s trip through Syria, Palestine and Egypt, so it may well be a corrupted translation of an Arabic or Middle-Eastern saying of the time.
Interestingly enough, one of the earliest records of this phrase – as reported above – is in The Christian Herald/Recorder, dated 1862 – the magazine was founded in Philadelphia in 1848, and ‘is the oldest existing periodical published by African-Americans.’ The phrase appears to be a (perhaps co-opted) Christian call to ‘turn the other cheek’ and attempts to disempower the aggressor, by hiding (but surely also internalizing) any pain caused. It is also of no little significance this phrase occurs during the American Civil War, with slavery as a central source of conflict – and where one can only imagine the brutality of the words being tossed at this time and place, let alone other sources of accompanying and aggressive violations.
As both storywriters and readers, we are familiar with the power of words. Words can transport us to new places, new emotions, and new perceptions. But, so too, can they also constrict, imprison – and yes, even hurt us. Words do sting – and they can surely damage and harm too. Words carry power (Griffith, 2011) – amplified by associations and historical resonances – it is no accident, with regards to racial epithets, that the ‘N’ word in America (and the corresponding ‘K’ word in South Africa) are now publically proscribed, although they retain reduced but still ongoing current usage, within particular enclaves, and for various purposes… But what, you may ask, has all of this to do with ‘disability’?
The denigration and oppression of ‘disability’:
Well, the ‘disability’ label itself is an evolving umbrella word, also having historically transmogrified from various negatively connoted terms, e.g. ‘cripple’, ‘spastic’, ‘handicapped’, ‘retarded’ etc. I trained as a clinical psychologist in South Africa – during the Apartheid State of Emergency in the nineteen eighties – and initially worked in forensic ‘learning disabilities’. At one point I presented – as mitigatory evidence to a court judge – a psychometric (intellectual) assessment of a young black man being charged with violent theft.
The (old white) judge got irritated with my careful qualifiers about the racial-cultural caveats needed on psychological tests. “Just tell me,” he snapped, “Is this man an idiot, an imbecile – or a moron?” (Terminology sanctioned by the International Classification of Diseases until as recently as 1977; ICD-IX. And terminology also associated with involuntary sterilization and the eugenics movement, attempting to ‘erase’ disability/difference – and carried enthusiastically forward by the Nazis during World War 2, Germany.)
Some would argue ‘disability’ is itself also becoming a loaded term, with a history of prior discarded negative terms and associations – the word may perhaps imply a lack of ability in certain areas of functioning, a concept in keeping with the ‘medical model’, i.e. entailing ‘deficits’ situated as internal and individual. The Disability Rights Movement ‘social’ model of disability, however, involves a conceptual shift towards considering ‘disability’ as a social concern and responsibility, caused not necessarily by an internal ‘deficit’, but by lack of recognition, access and support for all of its differently abled citizens (Vanderhooft, 2013).
So, as per the Union of the Physically Impaired Against Segregation’s (UPIAS) 1976 statement:
“In our view, it is society which disables physically impaired people. Disability is something that is imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group”
(Dawood, 2017, p.22).
Oppressed and marginalized groups need their ‘voices’ to be heard by society, if meaningful change is going to occur. Recognition will be boosted by representation – so, as always, representation does matter! There has been hitherto relatively little good representation of ‘disability’ in SF. (By ‘good’, I don’t mean tidied up, ‘PC’ representations, but explorations of fully human characters struggling within societal contexts that are challenging, and may require addressing and change.) ‘Flowers for Algernon’ by Daniel Keyes (1966) is an early, if contentious, example. A recent successful ‘Disability in SF’ anthology, focusing on the socio-political nexus, has been Kathryn Allan and Djibril al-Ayad’s (2015) ‘Accessing the Future: A Disability-Themed Anthology of Speculative Fiction.’
A website repository by the Finnish writer Maija Haavisto heralds ‘crip-fic’, a term she has ironically re-coined, in an attempt to subvert ‘heroic and inspirational’ societal narratives of disability, which tend to patronize and ‘other’ experiential accounts of people with disabilities.
Nicola Griffith (2017) suggests using the ‘Fries’ test for discerning the use of ‘disabled’ characters in fiction. Academic and disability activist Kenny Fries (2017) argues for stories that contest the ‘nondisabled gaze’, which perpetuate cultural stereotypes and, at best, implicit prejudice against disability. One such narrative pattern is the nondisabled (lead) character ‘learning’ from the disabled character, who ends up dying. (Akin to the expendable ‘redshirts’ in Star Trek.) Essentially, in Nicola’s opinion, fiction with disabled protagonists needs to not treat disability as a ‘narrative prosthesis.’
Kenny Fries argues for interrogating questions around disability narratives to include: “Does a work have more than one disabled character? Do the disabled characters have their own narrative purpose, other than the education and profit of a nondisabled character? Is the character’s disability not eradicated either by curing or killing?” (And Nicola moves on to providing a rolling list of fiction that seems to pass the ‘Fries’ test: see below.)
Destroying SF (and ‘Disability’):
So too, will it be likely that the upcoming Special Issue (2018) of Uncanny Magazine both subverts ‘ableist’ narratives, and passes the ‘Fries’ test, by empowering ‘Disabled People to Destroy Science Fiction’. ‘Disability’ as the Power to Destroy – now what could be more ‘inspiring’? (Especially when one considers the dystopic status quo that currently prevails in most places on the planet, entrenched neo-liberal patriarchy, neo-colonial in its expansion.) So, I’m looking forward very much to SF being ‘destroyed’ by ‘Disabled’ People.
But Who, Then, is ‘Disabled’?
And I can imagine this issue not only ‘destroying’ SF, but also the notion of ‘disability’ itself, by subverting the dominant ableist narrative of ‘disability’ as an ‘inspiring show’ from implicitly ‘inferior’ people. Instead, I look forward to much fun (as well as pain) within stories, centering people with various (dis)abilities challenged by societal norms and prejudices, but grasping the future any which way they can, to make this a better world for at least some, if not all of us.
The Sticks and Stones of ‘Disability’:
As for me, I have chronic and ongoing encounters with three incurable illnesses from over ten years ago (Meniere’s Disease, TMD and CP/CPPS – none terminal), that eventually necessitated an incorporation of ‘disability’ into my own self-identification. Partial deafness, constant jaw and pelvic pain, and urinary problems. It took me some years before I both accepted a ‘disabled’ label – and was willing to share it with others – such is the tenacious stigma and social shame around such terms (Dawood and Williams, 2018; Wood, Qureshi and Mughal, 2017). See, too, Nicola Griffith’s (2016) Blog on ‘Coming Out as a Cripple.’
At first I thought all of 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, at least I write.
But the difficulties do require acknowledgement and adjustment and (for me) reduced productivity and focus. There are costs to illness and disability – sticks and stones are both felt within the body – and still persist in various places without. Witness the perception of disability difference as ‘deformity’ stemming from ‘poor genes,’ or else coming from ‘evil’ influences. The language of eugenics has never completely gone away. (See, for example, Toby Young’s call for ‘progressive eugenics’: Allen, 2018).
So Why Do We Keep Writing?
I believe, in the end, we write not only to testify or destroy – but to create and build, together. I write because the personal is political. When I presented to a network of National Health Service pelvic pain providers on how services needed to change, in order to meet the needs of people with Chronic Pelvic Pain Syndrome, I met some of my ‘sisters’ in CPPS – e.g. endometriosis is a common – but not the only – cause of CPPS, amongst women. They introduced me to literature showing that their pain is minimized even more by the medical profession – that is, women are frequently seen as ‘hysterical’ and exaggerating of pain and are often dismissed by health professionals when they seek support.
Disability is both intersectional and contextual. As a white, privileged hetero and cis-gendered male, I have additional implicit systemic/structural supports to help me cope and manage – but these come to me, at a cost to so many others.
I am both lucky – and privileged. I need to do more, with what I can.
But alone, I can do nothing.
Like any good utopian Starship Enterprise, we need a good crew on this Mission (and no redshirts allowed) – so please do follow Uncanny Magazine’s upcoming Disabled People Destroy Science Fiction. The fiction writer and non-fiction editor Elsa Sjunneson-Henry (see below) is moving on developing a Committee to support Disability within SFWA.
And if anyone wants articles referenced here, I can send them to you, on request.
Onwards, to the Destruction of Science Fiction! (And with thanks to Nicola Griffith for commenting on a draft of this essay, all remaining flaws mine, as they say!)
To read about some SF/F writers experiences with disability and illness:
Kenny Fries (2017). The Fries Test on Disability Representation in our Culture.
Nicola Griffith (2011) Lame is so Gay
Nicola Griffith (2014). My Health.
Nicola Griffith (2016) Coming Out as a Cripple
Nicola Griffith (2017). The Fries test for disabled characters in fiction
Helgadottir, M. (2017) Problem Daughters: Interview with Nicolette Barischoff.
Nalo Hopkinson: (2013) The Geek’s Guide to the Galaxy. Lightspeed, 37.
Kameron Hurley: (2010) Where Have All the Brutal Women Gone?
Rose Lemberg (2018). Writing While Autistic
Nnedi Okorafor (2017). How Nnedi Got Her Curved Spine. The Manchester Review, 18.
Nisi Shawl: ‘I am Strong: I’m Invisible’.
Elsa Sjunneson-Henry (2016) Guest Post: Elsa Sjunneson-Henry talks about Writing Deaf and Blind Characters.
Fran Wilde (2018): ‘We Will See You Now’. Uncanny Magazine, 20.
Allen, A. (2018). Toby Young: what is ‘progressive eugenics’ and what does it have to do with meritocracy? The Conversation.
Bargiela, SN; (2015) Young women’s experiences of having Autism Spectrum Disorder. Doctoral Thesis, UCL (University College London).
Bury, M. (2001) Illness narratives: Fact or fiction? Sociology of Health & Illness, 23(3), 263-285.
Dawood, R. (2017). Understanding the socio-political dimensions of disability within clinical psychology, Clinical Psychology Forum, 299, 21-24.
Frank, A. (2013). The Wounded Storyteller. University of Chicago Press. (Second Edition.)
Kabat-Zinn, J. (1990) Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness. Bantam Dell.
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.
Lambert, M. (2017). Austerity has trampled over disabled people’s rights. But the UK won’t admit. The Guardian, 4th September.
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. Vintage Books.
Shawl, N. (2013) Invisible Inks: On Black SF Authors and Disability. In WisCon Chronicles 7, “Shattering Ableist Narratives“. Ed. JoSelle Vanderhooft; Aqueduct Press.
Vanderhooft, J. (2013, Ed.) WisCon Chronicles 7, “Shattering Ableist Narratives”. Aqueduct Press.
Wallace, G. & Dawood, R. (2018) Out of sight but on our minds: Invisible stigmatised identities and disclosure, Clinical Psychology Forum, 301: 33-37.
Wood, N., Qureshi, A., & Mughal, F. (2017). Positioning, telling, and performing a male illness: Chronic prostatitis/chronic pelvic pain syndrome. British Journal of Health Psychology, 22(4):904-919.
Nick Wood (March 2018)