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?

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.

Blind Spot at Two

Happy 2nd Birthday Blind Spot Blog

When I started Blind Spot two years ago, I thought I would use it to chronicle my research project on blindness in French culture as well as my experiences as a partially blind academic. In my first post I promised to write about my research findings and I renewed that promise on the blog's first birthday. In fact when I look back at the 80 or so posts I have written since Blind Spot started, only a handful of them are overtly about my academic work. (See, for example, 'Reading in Detail'; 'Therese-Adele Husson'; 'Flaubert and the Medical Model of Disability'; 'The Taboo of Blindness' and 'Touching the Book'.) What started out as a research blog has gradually become a collection of writings on blindness, disability and the tyranny of the normal. My most popular posts, (which appear at the bottom of this page) are about Children in Need, audio description, the unwitting dangers of ableist society and blindness in popular film and fiction. My favourite posts are about my relationship with BBC Radio 4, the joy of public transport and learning braille. What all 80 posts tell me is that this blog has helped me both claim and celebrate my blindness, it has made me into a disability activist and it has introduced me to many new people and experiences.

I may not mention my research very often but it is still the driving force behind this blog. My thoughts on blindness in the modern world are always informed by the work I am doing on nineteenth-century French fiction (and increasingly the reverse is also true). Indeed the most interesting of the 40 or so novels featuring blindness I have worked on so far are the ones which challenge or critique some of the misconceptions about both disability in general and blindness in particular which still haunt modern society.

The figure of the passive blind beggar is a recurrent feature of nineteenth-century French literature. The way that he is often used as a symbol of failure or tragedy finds a sinister echo in contemporary images of blindness such as the offensive advert I wrote about last year. Such depictions insidiously emphasise that blindness is a disaster, a tragedy, almost a fate worse than death. But my research shows that not all nineteenth-century French writers were happy to accept this predominant stereotype. One such example is a 1892 primary school textbook by Vessiot which includes a short story in which two schoolgirls discover the hitherto unsuspected intelligence of their local blind beggar. Like another story which appeared in 1887, 'L'Aveugle' by Alphonse de Launay, this seemingly innocent tale in fact encourages a whole generation to rethink their preconceived notions of blindness by teaching them that appearances can be deceptive. One of the things I will argue in Visions of Blindness in French Fiction 1789-2013, the book which will eventually come out of my research, is that it is only by understanding how and why the blind were depicted throughout history, whilst also analysing the works which critique such depictions, that we can hope to finally rid society of its pervasive and devastatingly negative view of blindness.

My Problem with Children in Need

Pudsey Bear: the 'Children in Need' mascot

Last Friday the BBC ran their annual 'Children in Need' appeal to raise money for children and young people in the UK. According to their website, the 'Children in Need' vision is 'that every child in the UK has a childhood which is safe, happy and secure [and which] allows them the chance to reach their potential'. This year, nearly £32 million was raised on appeal night, as the British public watched a series of heart-wrenching films alternating with celebrity appearances, songs and features.

'Children in Need' is something of a British institution and I have watched it all my life. But it is only this year that I have begun to think critically about both the nature of the appeal, and the methods they use. Their aim is a laudable one, but shouldn't a happy, safe and fulfilling childhood be the birthright of every child? Why are we depending on the good-will of the British public to make this happen? Shouldn't it be up to the government to fund these services? Many of the projects featured on Friday's programme seem pretty crucial to me: hospices, bereavement counselling and assistance dogs don't feel like luxuries. They should be at the centre of a joined-up welfare system which ensures that every child is given what they need to achieve their potential regardless of where they live or their family's income. (Not to mention the problematic focus on the UK when children are dying all over the world right now).

Like guide dog puppies, children are hugely photogenic. It is easy to use sad music, well-chosen words and tragic images of cute children to guilt-trip the British public into donating a few pounds. Viewed critically, the 'Children in Need' appeal might be seen as a masterpiece of insidious manipulation. People give money because they feel sorry for the brave children who are struggling with truly terrible afflictions. For the next twelve months we are comforted by the thought of our altruistic act of giving and handily forget about the terrible unfairness of a welfare system which isn't doing the job it was surely meant to do. Giving makes us feel better, and there is no doubt that people are benefiting from the donations we make. Giving solves short-term problems but it does not necessarily help in the longer term. Charities are only as strong as their bank balance. If the money dries up, the projects vanish. This is why these services need to be centrally funded in a sustained and sustainable way. Rather than encouraging big business through enormous tax breaks, the state should pour as much money as it possibly can into making sure that every child in the UK automatically has a happy, safe and fulfilling childhood.

Another issue that 'Children in Need' conveniently forgets is the question of what happens to these children when they turn 18. Adult welfare and social care is woefully underfunded in this country and it is being cut dramatically even as I type. As well as (or instead of) giving money to 'Children in Need', please consider signing the WOW petition which calls on the government to completely rethink their welfare policies and priorities. Sick and disabled adults are much less photogenic than their younger counterparts. Yet they are just as much, if not more in need. I wonder how many disabled children featured on 'Children in Need' in the past are now disabled adults who are struggling because of government cuts and punitive welfare reform. Now that would be a documentary I'd like to see.

I have always felt a special bond with Pudsey, the 'Children in Need mascot. After all we both have an apparently inoperable eye-condition which doesn't stop us smiling. But increasingly I don't like  what he stands for. He uses the language of tragedy, pity, bravery and sympathy to get the British public to happily pay for services which our government should be providing. And he uses photogenic images and tear-jerking music to blur our critical judgement so that we stop asking why.

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'.

The Voice Part 2 The Result

In April I wrote about Andrea Begley's 'blind' audition for UK TV show The Voice : in that post I wondered how the judges - and the voting public - would deal with the presence of a partially blind singer in the competition. Would they reward her for her voice, or would they vote for her out of a misplaced sense of condescension and pity?

I have enjoyed watching Andrea's progress in the competition. Her folksy, melancholic, guitar-strumming, female-acoustic, singer-songwriter vibe is my favourite kind of music. But in a way I've been more interested in  how the show's producers have dealt with her blindness. And I've been pleasantly surprised. In the clips which precede each singer's performance they have focused on Andrea's sense of humour, wit and independent spirit rather than her disability. They showed her at work, travelling with her white cane and chilling with friends and family. There was absolutely no talk of triumph or tragedy. The judges have been less careful in their choice of words. Their repeated use of adjectives like 'inspirational' and 'brave' verge on the patronising and speak more of their own disabling attitudes than of Andrea herself.

Last night I had mixed feelings when Andrea unexpectedly beat favourite Leah McFall to win the show. On the one hand I was of course delighted for her. Not only because this might be her way in to a notoriously shallow and judgemental business, but also because we are desperately in need of positive disabled role models. But even as I type those words I worry that by giving Andrea the responsibility of being a role-model for the visually impaired, I am celebrating her not for her voice, but for her disability. And this is exactly the opposite of what she wanted to achieve by being on the show in the first place.

I hope that Andrea's unexpected win was down to the fact that all those who love her voice voted for her. And also, perhaps, that Leah's fans were lulled into a false sense of security and thought her victory was so guaranteed that they didn't need to bother. But I worry, despite the production team's brilliant handling of Andrea's disability, that there were some people who voted for her out of pity, some people who felt sorry for the poor blind girl.  If this is the case, and I fear it is, then attitudes to blindness, indeed to disability in general, have not changed as much as the success of the Paralympics led us to believe. As I prepare to leave for Paris to speak at the International Colloquium on the History of Blindness and the Blind, I am glad that Andrea has earned herself a place in the history both of blindness and of popular culture. But I await the next chapter in her career in the hope that it will put my nagging doubts about the motives of the voting public to rest.

The Taboo of Blindness

Taboo: Corporeal Secrets in Nineteenth Century France

(Oxford: Legenda, 2013)

(Cover image courtesy of the Wellcome Library, London)

When I was a child, blindness was a taboo subject in our house. We never mentioned the word if we could help it and I remember a feeling of icy awkwardness descending if we ever encountered references to blindness or the blind on television. With the exception of The Little House on the Prairie I don't remember being read any books with blind characters in them and I suspect that my mum would rather not have read me the blindness episodes in Laura Ingalls Wilder's books. When we had to talk about what I could and could not see, I referred simply to 'my eyes'. When asked, I might say that I was 'half-blind' or 'registered blind' (in fact I was quite proud of being 'different' or 'special' sometimes) but I did not see myself as 'blind'. This was why I would not carry a white cane and hated 'mobility training' with a vengeance.

It was this refusal, both by me and by those around me, to address my blindness directly which led to my ferocious desire to 'pass' as a sighted person and deny my blind identity. The taboo status of 'blindness' made it a negative notion which I could not relate to my own reality. But it was also this negativity which surrounded 'blindness', a negativity learnt from prevailing societal attitudes to it, which rendered it taboo in the first place. Rather than admitting that I was blind, it felt easier to ignore it and hope others would do the same. It is only in the last eighteen months or so that I have been able to happily embrace my blind identity, an identity which now sits in a sometimes easy, sometimes conflictual, but always interesting relationship with my sighted self.

When I started thinking about how taboo aspects of bodily reality such as female sexual desire, illness, sado-masochism, disability, impotence and incest are represented in nineteenth-century French texts, I had no idea that this project would lead to my own personal interrogation of the taboo on blindness. But in my book, Taboo: Corporeal Secrets in Nineteenth-Century France, published this month, I demonstrate that it is only by engaging with potentially difficult subjects that we can rid them of the negativity which surrounds them. As I argue in my Conclusion:  

'The taboo bodies which this study has uncovered are crucially important because they invite us to look again at our own misconceptions of what makes the body normal, beautiful, or perfect. Like the social model of disability, they urge us to rethink our understanding of how bodies relate to the world. [...] Exposure to the taboo is a necessary, though not always a comfortable, part of becoming an engaged and insightful reader. By discovering the form and function of the taboo bodies hidden at the text's heart, the reader is finally free to question his or her own misconceptions and thus begin to relate to bodies of any kind in new and enlightened ways.'

The Voice: Blind Auditions

Andrea Begley during her 'blind' audition

(from bbc.co.uk)

At first glance BBC One's The Voice appears to be just another Saturday teatime talent show. Yet what sets this particular programme apart is its intriguing format, a format which has the potential to make the Great British Public think differently about blindness (and the blind).

In the early stages of the competition - the so-called 'blind auditions' - the four celebrity judges must decide whether or not they want to back each singer purely by the sound of their voice: they sit with their backs turned and focus only on what they can hear. Once they commit to supporting a performer, their chair turns round and they are allowed to watch the remainder of the audition.

When I came across the first series of the show last year I was very taken with its early stages. I liked the way these 'blind' auditions create a level playing field for the performers where age, size and shape no longer matter. I also liked the way that the judges' 'blindness' became a virtue: it seemed to make them more discerning, more focused, more 'real' in their choices.

I don't remember last year's episodes addressing the concept of 'blindness' head on: the term 'blind auditions' was nothing more than a phrase coined to help market the show.  But this year, the presence of partially blind singer Andrea Begley at the auditions gave the first episode a whole new dimension.

Public perception that blindness is a tragedy is so pervasive that it is almost impossible to find stories of blindness in the media which do not talk of bravery or courage, struggle or overcoming. But this is not Begley's story. On her website and in her performances Begley is first and foremost a singer. Her blindness is secondary to her career; it is an inconvenience, not a limiting or defining feature. If Begley is disabled, it is not by her lack of sight, but by society's attitude to it. Begley wanted to appear on The Voice because she wanted to be judged for who she is, not for who people think she is. And the fact that two judges turned proves that her blindness is neither here not there.

But however much The Voice claims to value 'blindness', this sightlessness is only temporary. Once the audition is over, the appearance of the performer is revealed. And it is no coincidence that as soon as the judges knew about Begley's blindness, their comments became tinged with that mixture of pity and awe which is so often found in discussions of the disabled. As with press reports of her performance (which found her 'heartwarming') it was hard to tell whether the judges and the audience were applauding Begley's singing, or the fact that they thought she had succeeded despite her blindness. It is a dismal reflection of society's persistently negative attitude towards blindness that Begley felt she needed to use a 'blind' audition in order to be judged on her own merits. But it is an even more dismal irony that the very show which has the potential to recast 'blindness' positively, appears to have done the precise opposite.

I am delighted that Begley has made it through to the next stage of the competition. It is hugely important for society to see images of happy, talented and successful blind people. But I worry that public reactions to Begley's blindness will undermine her own positivity by constantly assuming that she deserves pity rather than respect.

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.

Happy Birthday Blind Spot Blog!

When I created this blog a year ago I had no idea what an adventure it would be. It started as a place to chart my research into French representations of blindness, but quickly blossomed into a way of commenting on the place of blindness - and then disability - in modern society more generally: the posts on audio description, the Paralympics and Tina Nash continue to attract interest from around the world. Alongside these current-affairs-related posts, there are also posts on my own way of living with blindness. This blog has given me a place to work out what I think about using a white cane, the shape and size of my eyes and what reading in detail really means.

But in this birthday post, I'd like to look again at my original research project. I have been spending a lot of time in the past year at the Association Valentin Hauy in Paris. Their library contains a vast collection of literature in French either by or about the blind. By gradually reading all the nineteenth-century novels they possess, I am building up a picture of how nineteenth-century France saw blindness. At first I was disappointed by what I found. Novels by blind novelist Therese-Adele Husson seemed to confirm my fears that blindness would be seen as a pitiful state characterised by emotional, financial and intellectual deprivation. As this blog has shown, this is the image of blindness usually found throughout cultural representations, from Madame Bovary to contemporary advertising and children's fiction. But as I delved deeper into the world of the nineteenth-century French novel, I found some examples of novels where the blind protagonists are capable and likable role-models. In the published work which will be the eventual fruit of this research, I will be arguing that these novels - by relatively unknown writers like Berthet and Pont-Jest - embrace the 'personal non-tragedy' approach which twentieth-first-century Disability Studies is only just engaging with.

I hope that my research will bring these neglected works out of obscurity and encourage readers to think again about literary representations of blindness.

Where Have All the Disabled People Gone?

I really miss the Paralympics. I used to love turning on the television and seeing all kinds of disabled people doing all kinds of impressive things. Disability was not just the new Normal, it was the new Cool. For those magical two weeks I was so proud to be seen out and about with my white cane. I looked at my non-disabled friends with an odd kind of pity: they suddenly seemed woefully unfashionable because their bodies were just so damn ordinary.

But the nation's enthusiasm for disability seems to have quickly waned. I was really hoping that the popularity of the Paralympics would lead to increased disability visibility on television. But it seems that the media is still obsessed with out-dated notions of the Normal.

Last night I went to see the majestic Francesca Martinez in her new stand-up show 'What the F*** is Normal?'. Inexplicably, I had only heard of Francesca earlier this year when she appeared on BBC Radio 4's 'News Quiz'. I was delighted and amazed to hear someone with a speech impediment on the radio. I instantly liked her witty and subversive take on current affairs. And I was pleased to hear Radio 4 fighting the nation's ingrained prejudices against difference by featuring a disabled comedian in one of its most popular programmes. Of course, my need to comment on this remarkable turn of events demonstrates how unusual it is. We still have a long long way to go before disability stops being marginalised.

If Francesca Martinez is funny enough to appear on the News Quiz (and she is), why have I not seen her on one of the BBC's many panel shows? Last night she suggested that the BBC thinks that she is too frightening to appear on TV. She might scare away the viewers, apparently. Now, what the BBC means by this is not that Francesca herself is frightening (she isn't), but that disability is frightening. And why is disability frightening? Because people do not understand it. And why do people not understand it? Because they have never been exposed to it: most people have never met a physically disabled person, much less had a conversation with them. So, if we follow the BBC's own logic, the only way to get Francesca on TV is to expose more people to disability. And a sure fire way of exposing  more people to disability is to get Francesca on TV.

The Paralympics made disability visible. Now the nation's broadcasters have a responsibility to enhance that visibility. It is only by seeking out disabled comedians, presenters, newscasters and writers that they will help position disability firmly in the mainstream.

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.