New Book: Discours et représentations du handicap. Perspectives culturelles

Critical Disability Studies is flourishing in Anglo-American academia but it is still an emerging discipline in France. Four years ago I was delighted to speak at a ground-breaking French conference on the subject. Now I'm equally pleased to have my work included in the wonderfully wide-ranging collection of essays from the conference. This collection is an important testimony to the diversity and vibrancy of Critical Disability Studies in France and will prove essential for anyone working on disability in a French context. The book (32 euros), or individual chapters (2-3 euros each) can be ordered here. The bibliography is available free of charge here. Most of the essays are in French with a couple in English.

Below I list the essay titles with their English abstracts. Bonne lecture!

Discours et représentations du handicap. Perspectives culturelles, edited by Céline Roussel and Soline Vennetier (Éditions Classiques Garnier, 2019)

Introduction (Céline Roussel and Soline Vennetier)

This introduction, which critically examines the development of Disability Studies and draws on the definitions of the notions of discourse and representation related to social and cultural practices, explores links between the contributions by researchers from various backgrounds. Using an terdisciplinary approach, it investigates the methods and tools of analysis from Disability Studies and probes their adaptations and equivalents in the French academic field.

Tammy Berberi – The Role(s) of Art and Literature in (Re)making Disability 
These remarks explore the pleasures of the unexpected as they continue to shape the author’s experiences as an American traveling in France and a disability studies scholar working in French and English. In literature as in life, the spaces in which people live, work, and imagine shape how they navigate their communities and themselves: barriers that foreclose on some experiences give rise to others, enriching one’s identity and disability as lived and studied around the world.

Anne Waldschmidt – Conceptualiser le modèle culturel du handicap comme dis/ability : perspectives interdisciplinaires et internationales / Disability Studies and the Cultural Model of Dis/ability. Interdisciplinary and International Perspectives Drawing on interdisciplinary and international debates, this essay develops a cultural model of disability in order to provide a framework to analyse dis/ability with the help of methodologies and approaches from Cultural Studies. As a necessary supplement to the social model of disability, the cultural model can help to understand better the relationships between society, culture and dis/ability. With it the intersections of 'normality' and 'disability' become the actual object of research.

Pierre Ancet – Handicap et culture. La culture comme travail de réflexion / Disability and Culture: Culture as Reflective Work
Culture fosters encounters – encountering the other and the unknown within oneself. To be cultivated means to cultivate distance from one's own certainties, which may prove salutary when one is different, or when one believes oneself to be “normal compared to others.” Disability offers an unusual experience of both the body and the world. Disability will be examined in relation to scientific and artistic culture, the practice of arts, and the mutual discovery of people’s humanity.

Michael Schillmeier – Le handicap (visuel) – des perspectives exclusives aux différences inclusives / (Visual) Disability: from Exclusive Perspectives to Inclusive Differences
Drawing on the practices of blind people in a visual culture, this paper introduces the concept “inclusive differences” of disability, suggesting that disability is the outcome of historically specific, embodied human and non-human configurations fabricated within the conduct of everyday life. This concept question the attempt of exclusive perspectives that try to divide analytically “disability” into an individual (natural) bodily impairment or a purely socio-cultural attributed disability.

Sébastien Durand – Parole et musique d'aveugle : la correspondance de Maria-Theresia von Paradis (1759-1824) avec Johann-Ludwig Weissenburg (1752-1800) / Blind People's Words and Music: the Correspondence Between Maria-Theresia von Paradis (1759-1824) and Johann-Ludwig Weissenburg (1752-1800)
In the 18th century, an Austrian young blind woman, Maria-Theresia von Paradis, aroused admiration for both her musical talents and her social adaptability. She started up a regular correspondence with Johann-Ludwig Weissenburg, an erudite blind man, who became her tutor. These texts, partly published in the newspapers of the time, disclose a wealth of information about the lives of blind people from the affluent upper classes of European Enlightenment society.

Flora Amann – Disability Studies, histoire de la littérature française et histoire des représentations : surdité et Révolution dans le roman sentimental français / Disability Studies, Literary History and History of Representations: Deafness and Revolution in the French Sentimental Novel
This study of the figure of the mute aristocrat and his relationship to discourses on deafness in sentimental novels after the French Revolution offers an enriching analysis to the disciplines of Literary History and Disability Studies. It contributes to the history of representations of deafness through time, and it offers a better understanding of the ways that themes and forms in these novels are inflected with their social and political context.

Mathilde Villechevrolle – Donner corps à ses frayeurs. Discours médical sur la surdité et anthropologie de la démocratie / Embodying one's fears. Medical Discourse on Deafness and Anthropology of Democracy
Medical discourses on deafness in the 19th century France have to be analyzed in relation to the development of political post-revolutionary democratic ideals, and to the “passion de l'égalité” it nurtures. The junction between vitalism and empiricism on the one hand, and the political inclination for a non-hierarchical society on the other hand, cristallizes into the figure of the deaf, and reeducating his/her speech becomes an aim where the political and the medical mingle.

Marion Chottin – Les aveugles des philosophes de l’Âge classique aux Lumières : aléas d’une pensée de la cécité entre rationalisme et empirisme / Philosophers' Blind People from the Classic Age to the Enlightenment: Hazards of a Thought on Blindness Between Rationalism and Empiricism.
This paper proposes a solution to a paradox of the Enlightenment, a century when both the French Royal Institute for the Blind was created, and the Empiricist philosophers, including John Locke, argued that ideas came from the sense of sight. Although this philosophy did indeed produce a negative notion of blindness, Empiricism also generated an alternative view, specifically in the work of George Berkeley, Denis Diderot and  d’Alembert, that in fact favoured the education of blind people

Barbara Fougère-Danezan – Take Shelter (USA, 2011) : l'implant cochléaire au cœur de la tempête, ou la surdité comme prisme d'analyse cinématographique / Take Shelter (USA, 2011): Cochlear Implant in the Eye of the Storm, Or Deafness as Prism for Cinematographic Analysis
In his ecofiction titled Take shelter (2011), the American director Jeff Nichols sets up a parallel between an ecological disaster and a young deaf girl being fitted with a cochlear implant. By doing so, he sets up a narrative system which plays on the tensions between Nature, Culture and Technology, that will be approached drawing on methodological and conceptual frameworks from Disability studies.

Olivier Schetrit – Le théâtre tremplin des Sourds : enjeux identitaires et esthétiques à travers l'exemple de l'International Visual Theatre / Theatre as a Springboard for Deaf People: Identity and Aesthetic Issues Through the Example of the International Visual Theatre
The Deaf Awakening of the 1970s was a pivotal historical period. The creation of the International Visual Theatre in 1976 offered an important micro-space for the expression of Deaf culture through various ways of staging sign language, and for valuing Deaf identity. The stage remains a privileged space in Deaf art for expressing freely one's art and Deaf culture, beyond normative judgement.

Marie Astier – Mise en scène et mise en jeu du handicap mental sur la scène contemporaine française. L'Empereur c'est moi ! : un spectacle qui invite à un changement de paradigme / Mental Disability on Stage and at Stake in the Contemporary French Drama. L'Empereur c'est moi !: a Stage Adaptation Inviting to a Shift of Paradigm
This paper focuses on the analysis of L’Empereur c’est moi!, a stage adaptation of the autobiographical book written by Hugo Horiot, who defines himself as having Asperger’s. Performed by the author himself, and by the deaf actress Clémence Colin, these neurological and sensorial differences move the performance away from dramatic form, as defined by Peter Szondi, to draw closer to what Hans-Thies Lehmann has called “postdramatic theater”.

Nidhal Mahmoud – Les Emmurés de Lucien Descaves : un exemple de typhlophilie littéraire / Lucien Descaves’ Les Emmurés: An Example of Blind-friendly Literature
Though they appear in some great works of classical literature, blind characters are generally represented as cloaked in misfortune, deprivation and darkness. By associating them with the figure of the beggar, art and literature have often abetted their exclusion from social life. Lucien Descaves rebels against such depictions in Les Emmurés (1894), an engaged, playful and original novel in which he strives to rehabilitate characters whose damnation revolts him.

Hannah Thompson – Reading Blindness in French Fiction through Critical Disability Studies 
Critical Disability Studies’ desire to celebrate blindness for its own sake finds an echo in fictional representations of visual impairment. Two key French representations of blindness, Lucien Descaves, Les Emmurés (1894) and Romain Villet, Look (2014), show how these writers’ positive attitudes to blindness demonstrate the socially, and culturally, constructed nature of disability, offering a useful, and timely, means of disassociating blindness from its hitherto negative connotations.

Bertrand Verine – La nuit et le noir, clichés métaphoriques de la cécité / Night and Darkness: Clichéd Metaphors of Blindness
A survey of discourses and practices in French blind culture reveals the persistence of metaphors of “night” and “darkness” to signify perception of the world without sight. Analysis suggests that these are visual metaphors that convey primarily an obsession with discovering or recovering absent light. Yet this dominant imaginary is subverted by some writers who express the possibility of existing beyond visual perception and the binary opposition of light versus night.

Ella Leith – Performing "Hearing-ness": Representations of the “signing impaired” in Contemporary British Sign Language Storytelling and Signart 
This paper focuses on the way “hearing culture” (i.e. non-deaf and non-signing people's ways of being) is represented in British Sign Language (BSL) vernacular performance arts, otherwise called “Signart”, through four illustrative examples of BSL performance-texts from the repertoire of an Edinburgh-based performance group, Visual Virus. It considers how cultural hearing-ness is portrayed in a way which contests hearing-centred discourse on deafness.

Julie Chateauvert – Intermédialité et proxémie : propositions pour une méthodologie d'analyse de la création en langue des signes / Intermediality and Proxemy: Towards a Methodology to Analyze Sign Language Creation
Although currently referred to as “poetry”, narrative creation in sign languages draws on aesthetic devices which resonate with art forms other than literature such as bodies in movement, performing arts, and image work. Beginning with an epistemological contextualization, this paper provides a political and aesthetic study of Jolanta Lapiak's work in order to showcase a method of analysis, which is capable of responding to the complexity of works considered as intermedial objects.

Kyra Pollitt – La « langue » et la « poésie » représentent-elles la « poésie en langue des signes » ? / Do Language and Poetry Represent Sign Language Poetry?
What evidence shows that academic discourses can alter perceptions of real-world phenomena? Using the case study of creative language forms in British Sign Language communities, the analysis explores what difference a name makes. What are the real-world implications of using the terms ‘sign language poetry’ or ‘Signart’?

Anne-Lyse Chabert – De la nécessité de changer notre manière de regarder le handicap / How and Why we Need to Consider Disability Differently
Which is the most useful perspective when talking about “disability”? Is an external, internal, or combined point of view enough in itself? The analysis of these three different points of view suggests that one fails to recognize the plenitude of a disabled person’s existence. Shouldn'tt we try to reclaim this plenitude by beginning with what he/she has to offer, independent of “disability” and his/her point of view?

Reviewing Blindness in French Fiction out now!

This image shows the front cover of Reviewing Blindness in French Fiction by Hannah Thompson. Above the title, a hand is shown reading a sheet of Braille. 

I am delighted to announce that my book Reviewing Blindness in French Fiction has been published by Palgrave in their Literary Disability Studies series.

In this work I show how and why French fiction is fascinated with visions of blindness by identifying and analysing the complicated relationship between writers, readers and fictions of blindness that permeates French fiction. Blindness is a mysterious phenomenon. It arouses curiosity and invites discussion. It is also a multi-layered and multi-faceted collection of narratives. Writers are drawn to blindness precisely because blindness itself is a collection of stories. The stereotypes, clichés and misconceptions which constitute what most non-blind people describe as “blindness”, have been described by David Bolt as a literary “metanarrative”. Whilst many French depictions of blindness reinforce and conform to the various strands of Bolt's mostly negative metanarrative, my work focuses on more positive depictions which question, undermine or deconstruct the prevailing myths of blindness. I re-view a selection of the most interesting, surprising and moving depictions of blindness in French fiction by authors including Brigitte Aubert, Honoré de Balzac, Georges Bataille, Tonino Benacquista, Maxime du Camp, Lucien Descaves, André Gide, Jean Giono, Hervé Guibert, Victor Hugo, Thérèse-Adèle Husson, Paul Margueritte, Guy de Maupassant, Marc Monnier, Maurice Renard, Didier Van Cauwelaert, Fred Vargas and Romain Villet.

Works by these authors contest and overturn received ideas of blindness through both the form and the content of their fiction. When blindness sheds its metaphorical meanings and exists as part of a narrative on its own terms, it becomes a positive signifier of change, desire, success and enhanced subjectivity.

Overview:

Chapter 1: Introduction
I begin my re-viewing of French fictional depictions of blindness by calling for a rejection of negative misconceptions of blindness. The most interesting depictions of blindness in French fiction are those which challenge stereotypes of blindness and the emerging field of Critical Disability Studies provides us with the theoretical tools needed to do this.

Chapter 2: The French Metanarrative of Blindness
I survey those literary depictions of blindness which reinforce the metanarrative of blindness discussed by David Bolt. Maupassant’s short story ‘The Blind Man’ evokes the blindness-ignorance and blindness-darkness synonymies whilst also using nominalisation and generalisation to dehumanise its protagonist. Blind male characters are represented as weaker, less active and less able to access language than their non-blind peers. Female blind characters, on the other hand, are often portrayed as meek and passive victims of their condition. Non-blind characters routinely trick, pity and manipulate blind characters in these typhlophobic fictions of blindness. The chapter ends with an analysis of André Gide’s The Pastorale Symphony which shows how myths of the blind mystic and of sensory compensation emphasise blind protagonists’ otherness.

Chapter 3: The Creative ‘Look’ of the Blind ‘Seer’
This chapter marks the beginning of  my sustained examination of the creative possibilities of blindness. Through close-readings of novels and short stories by Honoré de Balzac, Victor Hugo, and Thérèse-Adèle Husson, I show that the unseeing gaze of the blind protagonist often transforms him or her into a surrogate narrator who is paradoxically more adept at gathering information than the sighted narrators usually present in realist texts. In works which feature blind narrators, the process of information gathering and dissemination becomes an even more overt challenge to the traditional supremacy of the sense of sight.

Chapter 4: Non-Visual Language and Descriptive Blindness
This chapter considers works by Hervé Guibert, Jean Giono, Romain Villet and Lucien Descaves which use blind characters to sensitise the reader to the descriptive power of non-visual language. In Blindsight, Guibert uses visually impenetrable language to stimulate his readers’ other senses whereas in The Song of the World, Giono mobilises the presence of a blind character to signal his use of non-visual description throughout the novel. My detailed reading of Descaves’ extraordinary novel of blindness, The Trapped, reveals not only that non-visual description is a highly effective way of communicating with a non-blind reader, but that Descaves includes braille in his novel in order to temporarily exclude his sighted readers.

Chapter 5: Male Desire and the Paradox of Blind Sexuality
In the first part of this chapter, I use readings of scenes of castration and pornographic pleasure from Hervé Guibert’s Blindsight and Georges Bataille’s Story of the Eye to suggest that both authors undermine the traditional dominance of the voyeuristic male gaze. In the second part, I explore how the non-visual eroticism suggested by the blindness-castration association is manifested in the descriptions of blind male desire found in Lucien Descaves’s The Trapped and Romain Villet’s Look.

Chapter 6: Silenced Sexualities: Listening to the Voice of the Blind Woman
Unlike the examples of blind male desire discussed in the previous chapter, the voices of blind female characters are much harder to hear. Blind female protagonists often remain silent in their texts: they are frequently unspeaking objects of the sighted male gaze and when they do speak, their words are often filtered through the voice of the male narrator. Detailed readings of Thérèse-Adèle Husson’s Reflections and Didier van Van Cauwelaert’s Jules shows how it is possible for a blind woman to subvert many of the stereotypes of blindness in order to express herself.

Chapter 7: Blind Assassins

This is the first of two chapters to focus on a specific literary genre, in this case the roman noir. Close readings of detective fiction by Fred Vargas and Brigitte Aubert show how this traditionally ocularcentric genre can be subverted by the presence of blind characters who encourage both other characters and the reader to reconsider the assumptions they routinely make about blindness. By comparing how male and female blind detective figures relate differently to the crimes they are solving, I also show, in chapters 5 and 6, that blind men and blind women are treated differently by both friends and enemies.

Chapter 8: Science, Fantasy and (In)Visible Blindness

Science fiction’s fascination with invisibility tells us more about blindness than it does about vision. Taking Maurice Renard as my main example, my detailed readings of The Blue Peril and The Doctored Man show that rather than reinforcing the supremacy of vision in the hierarchy of the senses, narratives which present us with different ways of seeing can in fact be read as celebrations of the powers and possibilities of blindness.

Chapter 9: Conclusion
I use Tonino Benacquista’s critically acclaimed 1991 roman policier, La commedia des ratés to show how French fiction’s most interesting representations of blindness are those which draw attention to a range of stereotypes of blindness before using surprising imagery, plot twists, characterization or stylistic features to undermine the reader’s expectations. This novelistic subversion encourages the reader to look again – or re-view – his or her understanding of blindness. Blindness is best understood as a multi-faceted and multi-layered collection of narratives which, when re-viewed together, testify to the powerfully creative potential of blindness. 

Reviewing Blindness in French Fiction is available as a hardback or e-book from Palgrave or amazon. If you are interested in reviewing the book, please get in touch.  

Why 'Non-Disabled' is better than 'Normal'

Earlier this week, I heard a well-known paralympic athlete talking about disability sport on the radio. After she made some very good points about the importance of volunteering, she struggled to find the words to describe non-disabled people. Initially she went with 'normal' and then she settled on 'able-bodied' but it was clear from the hesitation in her voice that she was happy with neither.

At first I was shocked to hear a disabled person using such overtly 'ableist' language. But then I realised that it is hard to find words which describe a person's lack of disability in a way which doesn't end up reflecting negatively on disability itself.

I make a conscious effort to avoid using the word 'normal' in a disability context. 'Normal' carries connotations of 'standard', 'regular' and 'usual' which immediately posits disability as something marginal, unexpected or undesirable. 'Normal' suggests a hierarchical judgement where disability is always irregular, out-of-step, different. And not in a good way.

'Able-bodied' is less contentious (but still, I would argue, inadequate). It too sets up a hierarchical binary where ability is more highly prized than its opposite. And it is also misleading. It puts the focus on a body's ability to do (or not do) certain things and therefore seems to privilege mobility-related disabilities over other kinds (such as sensory or cognitive). And it forgets that all bodies - including disabled bodies - can be 'able' in a whole variety of ways.

My favourite term for people who do not have a disability is simply 'non-disabled'. I like the fact that the negative in this expression is associated with the kinds of bodies which are usually described positively. This suggests that disability is something to celebrate and implies that non-disabled people are  missing out. Like 'partially blind' (rather than 'partially sighted'), 'non-disabled' encourages us to rethink the traditional deficit model which sees disabled people as lacking something. It allows us to celebrate 'disability gain' and gives us a way of talking about the differences between people, without making insidious value judgements about them.

Practising Inclusive Access

As I become more involved in Disability Studies as a discipline, I find myself increasingly invited to attend disability-themed events at both my own and other institutions. These range from academic conferences where I present my work and discuss the work of others, to talks for a general audience about issues around disability, and meetings and workshops about improving support for both disabled students and staff across the HE sector.

The organisers of such events do a great job of ensuring that they are always wheelchair accessible. But disabled access is about a lot more than wheelchairs. Recently I have found myself in the somewhat paradoxical position of discussing the importance of disability awareness-raising during a number of events which were not fully accessible to me. Powerpoints are almost always used, but I rarely encounter a speaker who takes the time to describe the images on the screen. Handouts are often circulated but unless they have been sent round in advance, I am unable to access the information they contain.

Practising inclusive access is not as onerous as it sounds. In fact many of the suggestions I list below are incredibly easy to incorporate:

• Offer large-print handouts a well as (or instead of) standard size ones.
• Circulate ALL materials (including powerpoints) in advance, electronically if possible. If you must table last-minute documents, offer to e-mail them to attendees on the spot and always circulate them after the meeting.
• Present at a comfortable pace 
• If you incorporate Powerpoint slides into your presentation / meeting: 
• use a high contrast colour scheme (i.e. white background, black font or the reverse)
• use a templated slide format
• use a sans-serif font, such as Arial, and maintain a large font size
• provide minimal text on each slide (only a few points)
• incorporate audio description of all images, graphs, charts on your slides
• Introduce yourself by name every time you speak, especially when several people are involved in a discussion. 
• Encourage others to do the same: during questions, ask audience members to introduce themselves as well; consider asking everyone in the room to say who they are at the beginning of a meeting.
• Use neutral (or positive) language rather than negative language: for example, say ‘wheelchair user’ or ‘wheelchair rider’ rather than ‘wheelchair-bound’; say ‘non-disabled’ rather than ‘normal’ or ‘able-bodied’; avoid formulations like ‘suffers from’.

These simple measures will make many events more accessible to a whole range of attendees. Practising inclusive access is easy once we know how: convincing (and then reminding) people to keep on doing it is the tricky part.

The Charity Dilemma

This blog was originally intended as a personal and professional response to my work as a partially blind academic in a resolutely sighted world. But as it has become more well-known, I am increasingly asked to write about various national and international initiatives related to sight and sightlessness. Whilst I am always happy to review books, films and other art works created by or featuring blind or partially blind people, I have very mixed feelings about helping charities promote their work. In this post I'd like to try and explain why.

Last week I was contacted by Blind Children UK who asked me to support their new campaign which aims to 'help raise awareness of the challenges faced by children with sight loss and the work that Blind Children UK is doing to help, by sharing their new 'Opening up the World' film online'.

A quick look round their website tells me that Blind Children UK do some great work. They help families access benefits and support services, provide mobility training for blind and partially blind children and produce customised large-print books for use at home and school.

Blind Children UK are clearly doing valuable and important work with children and their families. So why do I feel uneasy about endorsing their campaign?

There are a number of reasons. Firstly, as I said in my post about Children in Need, I don't think it should be up to charities to provide children and young people with essential services. Surely every child in the UK should have proper and equal access to educational and leisure activities no matter what their abilities. Shouldn't it be the duty of the government, funded by the tax payer, to ensure that every child's (and indeed adult's) access needs are met as a matter of course? By doing such excellent work, aren't charities actually letting the state off the hook? And the government isn't the only culprit. Why can't publishers work harder to provide a range of low-cost alternatives to standard print books? And why are libraries' large-print and audio collections always much more limited than their 'normal' print collections? After all, readers who can access 'normal' print can also read large print. And what if schools stopped mainly teaching using sighted methods and adopted a multi-sensory approach to learning where all children were taught to use all their senses to explore the world? Why not teach sign-language - or even Braille - as part of the national curriculum? If it is true that more and more children are being registered as blind or visually impaired each year, then surely it would make sense to put universal access into place now.

Secondly, a lot of work that Blind Children UK do is around what they call 'emotional support' for families. Unfortunately, we live in a society where the majority of people still think of blindness as a tragedy. This means that when a child is diagnosed with a visual impairment their parents have already been conditioned to experience feelings of sadness, worry or even mourning. But as I have said before, and will say again, blindness is not a tragedy. It is just a different way of being. Sure, it has its inconveniences, but life is often inconvenient for many reasons. People are not disabled by blindness, they are disabled by society's attitude to blindness. Whilst I'm sure Blind Children UK do a great job of supporting emotionally vulnerable parents, I would like to see a society where this kind of support is no longer necessary. What do we need to do in order for society to celebrate blindness? How can we rid blindness of its associations with stigma, weakness, passivity and failure?

Thirdly, I am very worried by the ease with which many charities - not just Blind Children UK - resort to the rhetoric of 'inspiration' 'overcoming' and 'triumph over adversity' to manipulate the public into pity giving. Perhaps I'm paranoid, over-sensitive or just plain critical, but I can't help seeing this kind of subtext in the 'Opening Up the World' film. I'd like to see this film as an illustration of the kind of pride that all parents feel when their children achieve things. But the combination of moving music, soft-focus shots and stirring visual metaphors (such as the swing's chain being slowly released) suggests that the film's producers want us to come away thinking that these children have achieved their various triumphs despite their blindness. One parent even says that her daughter is still smiling. In our minds we complete the sentence with 'even though she was born blind'. The subliminal message is that these are brave and determined children who have overcome great odds to get where they are. But children aren't born knowing what society thinks of blindness. They aren't born knowing that they see differently from other people. Walking, swinging and doing maths come just as naturally to blind children as to sighted ones. But if society conditions us to expect less of blind children, then even routine activities become momentous achievements in the eyes of parents, teachers and the world at large. And every time a blind child is called 'brave', the blindness-as-tragedy myth is reinforced. In their press release, Blind Children UK describe their film thus: 'It’s a beautiful film that shows how, with help, these children and their families are overcoming huge obstacles to build their lives. It really captures strength in the face of adversity.' This kind of sentimentalised description comes dangerously close to what Disability activists have called 'inspiration porn': read this brilliant blog post by Cara Leibowitz to understand how these kinds of images (which may be very well-intentioned) serve to perpetuate negative attitudes to disability.

Blind Children UK are no doubt doing a brilliant job of offering support to children and their families. But I'd also like to see them, and others, think about how to change attitudes to blindness amongst the non-disabled population more generally. For it is only when blindness has lost all its negative connotations and becomes an entirely unremarkable way of being that blind and partially blind children will be part of a society that is happy to have them.

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.

The Ethics of the 'Tragedy' Approach

Since I started thinking critically about blindness, I have repeatedly argued in this blog against the widely held view that blindness, or indeed any disability, is a tragedy. I have become interested in the 'personal non-tragedy' approach to disability and in March 2013 I am organising a study day to explore issues around tragedy and disability.

I thought that seeing disability as a tragedy perpetuated society's view of the disabled (and thus disabled people's view of themselves) as inferior, somehow lesser people. In a post on Tina Nash - the woman ferociously blinded by her boyfriend Shane Jenkin in 2011 -  I noted how Tina herself resisted the media's attempts to assign the traditional disability labels of 'brave' and 'courageous' to her. I was trying to argue that this resistance demonstrates that disability is not inherently tragic and that Tina's refusal to see herself as a victim was empowering not just for her but also for other disabled people. 

I recently received a very angry response to my Tina Nash post from Maria Brody. Maria's comments, which I found shocking and hurtful, accused me of being more immoral, more evil, than Tina's attacker. Maria's argument is that by refusing to see disability as a tragedy, I undermine the severity of Jenkin's crime and make disabled people feel guilty for wanting to be 'whole' again. Her comments, as well as demonstrating the alarming pervasiveness of myths of blindness and disability amongst the general public, raise important questions about the ethics of my 'personal non-ttragedy' approach. Maria sent me her comments by e-mail and I include them in full below in italics, with my responses in bold.

You do realize that it is a mindset such as the one you describe that contributes to torturers like Shane Jenkin getting only six years in prison? After which he can happily go out again and pluck out someone else's eyes. Creating more blindness. More tragedy, yes.
I think your post is a massive insult to victims of violence.

I did not intend to insult anyone nor to belittle Jenkin's actions. He subjected Tina to a brutal and violent assault and should be punished for it. How Tina is living with her blindness is a completely separate issue. She is living her life in a way which shows that blindness is not a tragedy and does not signal the end of life as we know it. Are you suggesting that she should give up on her life, her children and her self-esteem so that perpetrators of violence receive longer sentences? Surely this would signify a further triumph for her torturer.

Rape is probably also best responded to by "laying back and enjoying it", according to your morals?

Rape, like assault, is a violent act inflicted on somebody against their will. As such it is reprehensible and wrong. My post does not suggest that Tina enjoyed her attack. It argues that once blinded, she adopted a positive attitude to her new way of being in the world.

It's all in the mind, there's no difference really between good or bad, it's the victim's own fault if she thinks blindness is a tragedy, if only she'll stop constructing herself as a victim she'll be just fine.

 

I do not blame anyone for thinking that blindness is a tragedy. After all we are constantly bombarded by this message in language, in the media, in film and in literature. My post on David Rathband's blinding reminds us that feelings of mourning and depression are extremely common when affected by sudden sight loss. But might blindness feel less tragic if Western civilisation stopped fetishizing the eyes, vision and the sense of sight?

Oh yeah, does it really make a difference whether you see your loved one's faces or not, or a sunset, or a tree, or the sky?

 

You are asking the wrong person. I really don't think it does make a difference. But then I didn't lose my sight suddenly like Tina and David so there are lots of things that I've never seen and never missed seeing.  My life doesn't feel empty because I've never seen them. Unlike most people, I've never seen sight as the most important of the senses. I use touch and smell extensively in my contact with the world.  

Or permanent darkness.

All the same, of course!

"Black is just another color, full of possibilities."

"Rape is just another form of sex, stop calling it a problem."

Why these parallels between rape and blindness? How do you think this makes blind people feel? 

Etc.

No.

You are the one acting blindly here,

 

This is an interesting turn of phrase. Do you see how even the metaphoric language we use constantly tells us that blindness is negative? 

 

 denying that reality can sometimes be horrific. And that evil does exist.

I am not denying that Tina suffered a violent and painful attack. But I am saying that she is refusing to let Jenkin's act ruin her life.

If you believe you are benefitting disabled people, and victims of violence, by denying their feelings and the hardships of their reality, think again.

I have had first-hand experience of the negative feelings having a disability can cause. Remember that I have been living with my blindness for 39 years. But I know now that these feelings are the product of society's negativisation of disability. This in turn is a result of an occulocentric society obsessed with conventional notions of beauty and perfection and with sight, vision and the eyes. Having a disability is often annoying, inconvenient, time-consuming and expensive. But it is not a tragedy.

Please.

Look again at what you wrote:

"It is significant that Tina rejects the epithets of 'courageous' and 'amazing' that the interviewer dangles in front of her. By doing so, Tina does much to demonstrate that blindness in itself is not a tragedy: rather, it is the sighted world's view of blindness which might be described as 'disabling'. If I described Tina as 'an inspiration' I would be undermining my own argument by buying into the 'disability as tragedy to be overcome' mindset. So I'll just say that hearing her voice on radio 4 this morning made me glad to know that she is there."

The last sentence must, judging from the preceding argumentation, mean: "hearing her voice on radio 4 this morning made me glad to know she is blind."

The last sentence means that I am glad that she is handling her blindness in a refreshingly positive way.

Really? That is disgusting.

 

And if this was not what you meant, what is it then making you so glad? Tina was "there" too when she had eyes, remember? - But that did not give you any thrill, did it?

True. But only because I had never heard of her before her blinding. I am not glad that Tina is blind. I am glad that she is showing other people who lose their sight suddenly that life can go on.

The real significance of Tina's rejection of the description "brave" is exactly what she is saying: She is just surviving. Praising her for bravery would in a way absolve the assailant who tortured her, making the assault "meaningful" or "OK", "not so bad after all". And Tina wants, of course, to hold on to the truth: to keep insisting that this was wrong, that this was entirely horrific and should not have happened to anyone. And that we should do our utmost to prevent similar evils from happening. To deny that is as great an insult as what he did to her.

I think we are saying the same thing here. I agree that what Jenkin did was horrific. But it would have been just as horrific - no more, no less -  if he had cut off her hands, her ears or her legs. By saying that his crime is worse because it led to blindness you are fetishizing the sense of sight and thus perpetuating the myth that says that gouging out the eyes is the most horrific punishment. Jenkin went for Tina's eyes because of society's fetishization of them. Without this privileging of the sense of sight, he might have turned his attention somewhere else.   

You, in my view, are trying to do to her mind, and everyone else's minds, what he did to her physically.

No, I am trying to do the opposite. I am trying to ask people to think again about blindness and the sighted world's understanding of it. I am trying to metaphorically open people's eyes.

One is doing disabled people no favor by denying reality and placing upon them the addition burden of guilt for still feeling deep down that they would rather be whole.

I agree. By constantly telling disabled people that they are somehow less than whole, society makes them yearn to be whole again. This creates a struggle between acceptance and self-loathing which can lead to depression or even suicide. But the burden of guilt for this lies not with disabled people but with those who constantly reinforce the 'disability as tragedy' myth, thus encouraging self-pity and immobilising the disabled in a stagnant victim culture.

It is one thing to keep a positive attitude to life in difficult circumstances - and an entirely different thing to blatantly lie about the difference between ability and disability.

I am not lying. I am questioning received wisdom and trying to go beyond superficial appearances.  

True, one can choose to use whatever one has to the best of one's abilities, and that is an inspiration to us all. But that does not mean that being disabled is not a tragedy.

Nor does it mean that it is a tragedy.

Do not deny Tina her own language of ghostliness and death. Blindness does have similarities with these conditions. You can describe your own life exactly as you like. But don't try to blind others to the truth of life. Perspective is part of reality, but not all of it.

I am not denying Tina her language or her feelings. I am celebrating her own description of her situation. It is completely understandable that Tina is in mourning for her sight. But this is the fault of a society which privileges sight over the other senses.

You are not helping, but committing a form of violence with this invasive morality of yours.

I am not a disability activist. I am an academic working on disability studies. No one is obliged to read this blog if it offends them.

That demon, Shane Jenkin, had at least a shred left in him of true morality - he said he expected to get 20 years for the gouging out of a woman's eyes. In other words, he knew he was guilty, and evil.

Whereas you, madam, try to deny both these facts.

No I don't. I agree that he is both guilty and evil.

My advice to you is to not let your mind become clouded by the present academic faith (as it really is more than a science) that language and perspective can change reality a 100 percent.

We can only hope to change the world by understanding how it works, by unpicking the myths and cliches which govern how people think.

It can't. And thank God for that, for if it could, there would be no place outside power, and no room for true love, which can only live by freedom.

Language is not an absolute, nor a magic stick which can make all your worries go away. The world is real after all. Your body, your emotions, your mind are realities beyond your representation of them. Other people are real too. And the tragedies that happen to them are real tragedies.

It is precisely because language is not an absolute that its use can be so insidious. Your own use of metaphors of blindness has shown how misuse of language can led to the confusion of myth and reality.


Here is a test whether I am right in saying that there is a real difference between being blind or seeing, or not:
You write that you are partially blind. Now, if a new technique was created which would give you perfect vision - would you use it or not?

This is a good question which I have thought about a lot. It is an academic question, a theoretical one really because there is no cure for coloboma and there never will be. But if a cure was found I would not use it. My reason for this is simple: the way I see is part of me. It has defined the way I think, behave anf feel since I was born. I cannot imagine myself without my blindness. If I suddenly regained my sight I think I would experience the kind of mourning that the sighted feel when they suddenly lose their sight. I bet you don't believe me. I bet you think that I am just saying this to further my argument. But you are wrong. I am proud of the way I look (in both senses). I never wish I could see perfectly. Sometimes I wonder if seeing better would make my life less complicated but I have never longed for sight and I'm certain that I would refuse a cure.



With regards, Maria.

Oh, and a PS: It is not "literature" which has taught us that "intentional blinding" - as you euphemistically rename this form of torture - is atrocious. What teaches us this is

1) personal experience with pain

2) compassion.  

We agree that intentional blinding is atrocious. But it is impossible to separate fiction and reality, or literature and life: Jenkin got the idea for this form of torture from a film he saw. This film, in turn, was probably inspired, either knowingly or unknowingly, by Western civilisation's fascination with intentional blinding, a fascination both nurtured by, and reflected in literature.

How not to welcome the Olympic Flame

Torchbearer 133 Malcolm Fretter carrying the Olympic Flame on the Torch Relay leg through Oxford. Credit: Danny Lawson/LOCOG/PA Wire

On 6th July 2005 I was sitting on the floor of a rented house in Oxford. I was holding my seven-month-old baby boy in my arms, watching a live announcement on TV and explaining to him why it was such great news that the 2012 Olympic Games would be held in London. I spoke a message of hope, equality and peace into his tiny ear.

Yesterday I took my boy, now an exuberant seven-year-old, to greet the Olympic Flame as it arrived in Oxford. We cheered and clapped as it reached the stage in South Park. But this truly once-in-a-lifetime moment was spoilt for me even before I managed to catch a glimpse of the flame. It wasn't the mass of promotional material for a soft drinks company, a bank and a mobile phone manufacturer that spoiled it (although that certainly did not help), it was one sentence of the welcome speech delivered by the Leader of Oxford City Council just before the flame arrived.

The torch was carried into South Park by sports coach Malcolm Fretter. As he introduced him, Bob Price said something along the lines of, 'Malcolm is in a wheelchair, but has made a huge contribution to sport in Wantage'. The problem with this sentence is the word 'but'. It seems such a small and insignificant word. Yet it conveys a deeply troubling message. The assumption behind this sentnece is that Malcolm is an inspirational coach and community leader because he does his work from his wheelchair. Every day he struggles to overcome the adversity that is his disability, every day he fights, and wins, a battle against his impaired body.

This assumption posits disability as something negative which has to be overcome, triumphed over, defeated. It sets up a hierarchy between the able-bodied and the disabled in which the disabled are second-class, always struggling to do things that the able-bodied take for granted. It implies that we would be better off without disability altogether.  It suggests that disabled people who manage to live a 'normal' life are heroes who should be celebrated for their bravery and tenacity.

I have absolutely no doubt that Malcolm has done great work in his community. And I'm sure that being in a wheelchair must be annoying, frustrating and inconvenient at times. I have no wish to denigrate him or his achievements. What I object to is the persistent assumption, by most people, that disability is a hardship, something that we would be better off without. How do you think that makes the permanently disabled feel? Every time someone makes this kind of assumption, especially in public, in front of a 20,000 strong crowd, the negative image that disability has is strengthened. And the disabled become less integrated, more marginalised.

What if we looked again at disability? How might seeing disability in a positive light be better for both the disabled and the able-bodied? It would remind us that bodies come in all shapes and sizes. It would show us that no-one is perfect: some people's imperfections are more visible than others, but everyone has a weakness. And that is fine. It would allow everyone to be happy with their own body, valuing rather than either hating or denying its particular limitations. And it would remind us that surface appearance can be deceptive, that our most interesting and significant characteristics aren't always visible to the naked eye.

I am taking my seven-year-old boy to the Paralympics in September. I want to try and counter the negative images of disability that he is constantly bombarded with despite my very best efforts. Perhaps Bob Price should try and get hold of some tickets. I hear they haven't quite sold out yet.

** UPDATE **
I sent Councillor Bob Price a link to my blog and a letter objecting to his choice of words. I received the following reply which he has given me permission to post on this blog. I post it unchanged and without comment:

Dear Dr Thompson

I am truly sorry if my use of that particular construction has given rise in your, or anyone's mind, to that negative interpretation.

It was not a carefully constructed speech, having been asked to do it only two hours earlier. And in the two minutes max that was allotted I was seeking to to hold up Mr Fetter as one of the 8000 'local heroes' ,as someone who had continued to work very extensively with sports and community groups despite the limitations deriving from his illness.The 'but' was intended to denote admiration and worth.

Thank you for your consideration in drawing this to my attention. I will be more careful in future.

Good wishes

Councillor Bob Price
Hinksey Park Ward
Leader of the Council

Shouting at the (Blind) Ref

I love watching football on TV even though I agree with Tim Unwin that sport can sometimes sound better on the radio. In the past I have watched matches in bars, cafes, student common rooms and hotels but this year I expect to be mostly watching from the comfort of my sofa.  My boys are now old enough to watch with me and are taking a keen interest in my wall chart. Yesterday I subjected them to my armchair commentary during the England-France game. After abandoning an attempt to explain to them why I was giggling every time the English player Wellbeck was mentioned (a joke only really suitable for fellow French literature enthusiasts....), I had to try and tell them why I thought that the referee was failing to properly acknowledge the fouls inflicted on the English by the French. In the heat of the moment my first response was "Because he's blind". Luckily, and much to my husand's amusement, I managed to stop myself just before these words left my mouth. Instead I explained that the referee cannot possibly spot every misdemeanour which takes place on the pitch: after all he only has one pair of eyes whereas we have the benefit of many TV cameras zooming in on the action.

Once the boys had accepted this explanation, I began to wonder at my original response. What does it mean when someone who identifies herself as 'blind', someone who is working hard to be proud of her blindness, uses this word as a term of abuse? I'd like to think that the years I've spent listening to football commentary have left me with a stock of easy and un-thought-through phrases to trot out on such occasions. Perhaps I also talk about 'games of two halves' and 'tired legs' without even noticing.

But I worry that my response reveals something more sinister. What if society is so ready to accept the negativity of blindness that even the blind find themselves using it as an insult? How can I hope to celebrate my blindness, let alone encourage others to do the same, when the emotion of a football match triggers this kind of mindless comment? Football fans are not known for the subtlety of their insults. Indeed this particular tournament has already been marred by accusations of racist language. I am delighted that racism at football matches has at last been identified as an issue and is being addressed. I wonder when (or rather, if) the misuse of the language of disability will be subjected to the same kind of scrutiny. I for one am now going to be paying a lot more attention to the kind of language I use when watching football.