Disability in Fiction: Astra

Astra by Naomi Foyle (Jo Fletcher Books, 2014)

Astra by Naomi Foyle is a beguiling and absorbing sci-fi/fantasy novel set in a post-apocalyptic eco-utopia. It tells the compelling story of what happens when a young girl's inquisitiveness, bravery and innocence collide with an adult world of distrust, manipulation and secrecy.It also happens to be an uplifting celebration of bodily diversity and an illustration of the 'social model' of disability in action.

Astra is full of characters with what our society might call 'imperfect' or 'incomplete' bodies. One of Astra's shelter mothers, Hokma, is missing an eye, Astra's shelter father Klor has a prosthetic leg and her primary school teacher uses a wheelchair. But in Is-Land none of these characters are disabled. The hi-tech yet resolutely natural world in which they live is perfectly  accessible to all of them because it has been created with bodily difference at its core. Many of the features which Foyle has invented for her fictional world could be usefully deployed in our real one to make homes, offices, gardens and information technology more welcoming spaces for all the people who use them.

The character of Hokma is particularly interesting. Although she is offered a prosthetic eye after her injury, she prefers to wear an eye patch. Like my teenage self, she refuses to hide her 'impairment' so instead she celebrates it by wearing a variety of beautifully hand-made patches which she co-ordinates with her moods. Hokma is one of the book's pivotal characters. She is powerful, brave and intelligent. Beyond reference to her eye patches, her half-blindness is barely mentioned. This is not because she is ashamed of it. Nor is it because others find it difficult to talk about. It is because blindness is not a tragedy in Is-Land. It is a bodily difference like any other, neither negative nor positive, just there. 

Hokma is clever enough to know that not everyone sees her blindness as a simple fact. Her sinister brother is so unenlightened that he still sees her missing eye as a tragedy, something he should feel guilty about. Hokma has no qualms about using his misguided feelings against him: when she needs his help she uses references to her damaged sight to manipulate him. She is wise enough to know that disability can be used as a kind of emotional blackmail against those too weak or stupid to truly see it for what it is.

It is no coincidence that, like Hokma's brother, the book's other evil characters are those most wedded to the controversial 'medical model' of disability. The shadowy government who controls Is-Land is using a kind of high-level genetic re-coding to rid the country of birth defects of all kinds. This is a sinister and malevolent move which has echoes of both Third Reich eugenics and more recent kinds of ethic cleansing. But what I find most fascinating about this extraordinary book is the way that all the 'good' characters, including Astra and Hokma, share a refreshingly enlightened approach to bodily difference. It is as if Foyle has used her characters' attitude to disability as an indication of their importance, a kind of code which tells us which characters we can trust and which we should despise.

Are You Coping?

Today I went to the Oxford Eye Hospital for my annual check up. Although my underlying eye condition - coloboma - has been stable since I was born, I have cataracts growing in both eyes which are steadily reducing my already low vision. The size of the Eye Hospital means that I rarely encounter the same doctor twice and today I was seen by yet another ophthalmologist whom I had never met. He explained what I already know: if my eyes were the same shape and size as everyone else's, the cataracts would have been unproblematically removed by now. But the nature of my eyes turns this routine operation into a risky and complicated procedure which he does not want to perform unless he absolutely has to.

This consultant has never met me and he only has a couple of minutes to flick through my notes. These tell him a lot about my eyes but not very much about me as a person. Perhaps this is why, after the eye exam is over, he asks me if I am 'coping'. At first I do not hear him properly and ask him to repeat himself: 'Are you copying with your gradual sight loss?' he asks.

I reassure him that I am 'coping' fine and our interview is over. It is only as I drink my traditional post-appointment latte that I realise that his question has left me feeling upset and a little angry. 'Coping' is not a neutral word: it has very specific connotations and these are always negative. There is a suggestion of 'only just' or 'barely'; 'hardly' or 'just about'. It is the absolute minimum, the lowest common denominator, the barely satisfactory. 'Coping' is a state which is just past 'struggling', on a par with 'surviving' and not quite 'managing'. There is nothing aspirational, optimistic or ambitious about 'coping'. It is a patronising, condescending, word because it assumes that this mediocrity, this unremarkability is enough for me. As long as I am 'coping', my consultant is happy. I think it is his lack of ambition for me, for any of his patients, which upsets me. I wish I had explained this to him. I wish I had said, 'no, I am not 'coping', I am thriving, flourishing, celebrating. I am writing, travelling, living.

It may seem a little extreme to read so much into only one word. (Of course close-reading is what I do best). But my work on representations of disability reveals that societal attitudes are both shaped and expressed through language. The repeated use of words like 'coping' by health professionals will teach society that this is all the disabled can expect. And this reinforces the already widespread view that disability is a life-limiting condition which must be 'suffered', 'endured' or perhaps even  'overcome'.

Disability and Culture: Whose Tragedy? Workshop

** UPDATE: Audio from this event is now available here **

As part of my research on representations of disability, I am developing an interdisciplinary and collaborative research project called 'Disability and Culture'. The first event in this project is a study day to explore how the 'personal non-tragedy' approach to disability, which I have already discussed here for example, can encourage us to see disability differently. I also wanted to showcase some of the ways in which Modernl Languages is interacting with the discipline of Disability Studies.

Disability and Culture: Whose Tragedy?

Part of Royal Holloway’s Trauma, Fiction, History Series, jointly sponsored by the School of Modern Languages, Literatures and Cultures and the Humanities and Arts Research Centre, Royal Holloway, University of London.

Thursday March 21^st, 2013

Centre for Creative Collaboration (c4cc)

16 Acton Street

London WC1X 9NG

Programme

11-11:30 Registration and Coffee

11:30-1pm Session One

Whose Disability? Challenging Stereotypical Representations of Epilepsy

Maria Vaccarella (Centre for the Humanities and Health and Comparative Literature Department, King’s College London)

Sur mes lèvres, Deafness, Embodiment: Towards a Film Phenomenology of a Differently Ordered Sensorium

Jenny Chamarette (Queen Mary, University of London)

Beyond the ‘Narrative of Overcoming’: Representations of Disability in Contemporary French Culture.

Sam Haigh (University of Warwick)

1-2pm: Lunch (Provided)

2-3:30:  Session Two

Ana García-Siñeriz, Esas mujeres rubias (2010): disability, gender, and the medical establishment

Abigail Lee Six (Royal Holloway, University of London)

The pain of itching

Naomi Segal (Birkbeck College, London)

‘Raw data’: autistic aloneness and the category of insight in Elle s’appelle Sabine

Vivienne Orchard (University of Southampton)

3:30-4pm: Tea

4-5:30pm Session Three

Telling, not seeing: blindness and travel writing

Charles Forsdick (University of Liverpool)
Read Charles' account of the day here.

On not being deaf to the blind

Kate Tunstall (Worcester College, Oxford)

Disability and Sexuality: the poetry of Denis Sanguin de Saint-Pavin (1595-1670)

Nick Hammond (University of Cambridge)

5:30 Closing Remarks and Plans for Next Stages

Attendance at the study day is free and includes lunch and refreshments. Anyone interested in attending should contact me to register for catering purposes.

The Centre for Creative Collaboration is a neutral collaborative space near King’s Cross. We are using this space to think about the  interdisciplinary and collaborative potential of the Disability and Culture project. This workshop is the first step in a project which we hope will expand into a dialogue not only between academics, but also with artistis, medical professionals, charities, activists and community groups.

Flaubert and the 'Medical' Model of Disability

In preparation for a research paper I am giving at the University of Kent as part of their 'Cultural Pathologies' seminar, I have been thinking about how nineteenth-century French literature depicts disability. The nineteenth century is well-known for its enthusiasm for scientific and medical progress. It would therefore seem logical that its writers would favour the  'medical' model of disability. This model is similar to the 'tragedy approach'. Both these models of disability still exist today. (See this post for an example of the 'tragedy' approach.)  The 'medical model' sees disability as something inherently negative which must be cured, or, better yet, eliminated entirely. The most extreme version of this model led to the eugenics of Nazi Germany.

The club foot episode in Gustave Flaubert's Madame Bovary can be read as an example of the 'medical' approach to disability. In the name of progress and patriotism, Homais and Emma convince Charles to cure Hippolyte's club foot using a new and complicated procedure. Hippolyte, who is perfectly happy with his foot the way it is, takes quite a lot of persuading. Like many disabled people, he does not see himself as in any way disadvantaged or inconvenienced by his difference and cannot really understand why the able-bodied are so eager to convince him otherwise.

When he eventually acquiesces, the operation seems to go perfectly, leaving Charles, and, more importantly, Emma to bask in the glory of his triumph. Unfortunately, however, Charles is not quite as talented as his wife would have him (and herself) believe. Hippolyte's leg soon becomes gangrenous and is eventually amputated by renowned surgeon Canivet.

The failure of Charles's attempt to cure Hippolyte is a wonderful illustration of the dangers of the 'medical' model. Homais and Emma believe in perfection, beauty and normality. Anything that deviates from any of these absolutes must be somehow lacking or inferior: a patient in need of a cure, a victim in need of pity. But their interference nearly costs Hippolyte his life. Why, rages Canivet, try and fix something that isn't even broken? Why mess with a perfectly happy and healthy man for no reason other than a misguided believe in progress for its own sake? Why indeed.