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Sunday, 30 November 2014

The Ethics of Recasting: Audio Mistrust in The Archers

I have long been an avid listener of BBC Radio 4's epic farming soap opera The Archers. As I said on my post about 'Blindness and/on the Radio', what I love about spoken word radio is the way that it is automatically accessible to blind people. The Archers has to have audio description built into its plot lines so that characters' speech also fills in the details we cannot see: like a film's audio description soundtrack, The Archers' dialogue tells us who characters are with, what they are doing and where they are.
Just as (I imagine) sighted viewers recognise the characters in their favourite television soaps by their appearance, I recognise Archers characters by the sound of their voice. But recently, there has been a spate of re-castings on The Archers which leave me confused, disorientated and more than a little dissatisfied. Whilst television recastings are incredibly rare (Lucy in Neighbours, Miss Ellie in Dallas, and Sam Mitchell in Eastenders are the only examples I can think of in the last 40 years or so), at least four major Archers characters (Clarrie, Hayley, Tony and now Tom) have been recast in recent years.
I know there are always practical reasons for recasting and it is not a decision producers take lightly. But the expectation that listeners will quickly and easily accept a new audio incarnation of a beloved and long-standing character paradoxically undermines the importance of voice to the very medium which depends on it. Helen's effusive repetition of Tom's name is not enough to convince me that this interloper is in fact Tom Archer. Radio listeners - like blind people - know how to identify people by voice. This is a skill built on the assumption that people are who they sound like: radio drama can only function successfully if producers respect this assumption. When the sacred link between voice and character is broken by an unexplained voice change, the listener's trust in audio falters and The Archers loses some of its magic.

Thursday, 13 November 2014

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.

Thursday, 18 September 2014

New Term; New Techniques

This academic year I am teaching two new courses which I have specifically designed to include Critical Disability Studies content. My new final-year option 'Blindness and Vision in French Culture' will use a range of texts, films and images to interrogate the French obsession with vision and the visual and what this might tell us about what 'blindness' means. I am also co-teaching a new first-year course, 'Decoding France: Language, Culture, Identity' for which I have designed my section around Jean-Dominique Bauby's fascinating memoir Le scaphandre et le papillon (The Diving Bell and the Butterfly).

The introduction of these new courses seems a perfect time to make my teaching experience - and my students' learning experience - more blindness-friendly. One of my greatest challenges as a teacher is recognising my students and distinguishing between them. I know all my students' names but I don't know their faces. So in the classroom I hardly ever know who I am talking to. My face blindness means that I sometimes do not even recognise people - like my husband or my children - whom I know extremely well. So I've been thinking about strategies to help me put names to faces in my classes.

I always ask my students to tell me their names before they speak in class, but this, like shouting out instead of hand-raising - is a difficult habit for them to get into. So this year I am going to sit my students in alphabetical order and ask them to keep the same seat in each class. This way I'll be able to work out who is absent and who is present by clocking empty chairs and I'll know which students to call on for answers. I'll also be able to use the position of their voices to match them with names and hopefully once I've made the voice-name connection, I'll start recognising them when they talk to me outside class.

My aim in thinking more proactively about how to manage my blindness in the classroom is not purely selfish. I also want my students to experience blindness as a creative way of being and doing rather than as a tragedy. I want them to study blindness in texts, but also to think about how their habits and assumptions unintentionally promote the kind of occularcentric world which I'd like my courses to critique.

Monday, 1 September 2014

Blind Creations conference - CFP issued

I am very excited to be co-organising the Blind Creations conference with Vanessa Warne (University of Manitoba, Canada). This three-day international conference, which will take place between 28 June and 30 June 2015, seeks to explore the relationship between blind people and artistic creation. Our definition of ‘blind person’ is broad, encompassing anyone who might be defined as having ‘non-normative vision’ and / or who relates to the world using senses other than sight. It welcomes interventions from blind and non-blind academics (with or without institutional affiliation), practitioners, advocates, writers and artists (also broadly defined to include musicians, dancers and sculptors as well as visual artists). It sees blind people not only as subjects in their own right, but also as active creators; as such it rejects the ‘medical model’ of disability which posits blind people as passive objects of medical investigation and rehabilitation. In so doing it hopes to challenge and reconceptualise the myths and stereotypes of ‘blindness’ which continue to circulate by recasting ‘blindness’ as a multi-faceted and positive creative force which might be usefully explored by both non-blind and blind people.

The conference will take place at Royal Holloway’s campus in Egham, Surrey, UK, We are pleased to announce that the conference will feature two plenary speakers: Prof Georgina Kleege (UC Berkeley) and Dr Zina Weygand (Paris). During the conference, we plan to host a number of cultural events, including a Blindness in Fiction Writers’ Roundtable (featuring novelist and poet, Naomi Foyle), a tactile museum tour, and an audio-described film screening.

The conference Call for Papers can be found here and more information about the speakers is available here

Thursday, 14 August 2014

Outdoor Shakespeare or the Unexpected Drawbacks of Technology

One of the lovely things about living in Oxford in the summer is the quirky British traditional of outdoor Shakespeare. Every year, several theatre companies put on productions of Shakespeare's plays in various unusual settings across the city. Yesterday my husband and I were lucky enough to enjoy Creation theatre's thrilling production of Macbeth in the hugely atmospheric grounds of Lady Margaret Hall.

I was first introduced to the phenomenon of outdoor Shakespeare around 20 years ago when I was a student in Cambridge. I remember loving the inventive way in which the plays were staged to make best use of their unique settings, and enjoying the immediacy and intimacy of the productions. But I also remember being frustrated by the acoustic challenges often posed by outdoor spaces. Sudden gusts of wind or bursts of heavy traffic noise would easily drown out a couplet or two, thus making Shakespeare's already complicated language even harder to understand.

Things have clearly moved on since my student days. Once we were seated at our cabaret-style table, I was pleased to hear the reassuringly loud music being efficiently broadcast by a powerful sound system. And as the play began, it became apparent that auditory issues are a thing of the past: I could hear all the actors perfectly - indeed perhaps even more clearly than in the traditional theatre  - thanks to their powerful radio mics.

Unfortunately, this technological improvement brought with it an unexpected problem for me. When several people are on stage at once, I rely on the direction their voices are coming from to identify who is speaking. But because everyone's lines were being relayed to the audience via the sound system, I had no way of using the actors' voices to situate them on stage. And because Shakespeare - unlike Racine - does not routinely use auditory clues or verbal prompts in his verse, I often found it hard to tell not only who was talking but also who they were talking to.

 Worse still, the play's inventive staging, which created a gripping and engaging narrative, also meant that the actors made use not only of the space directly in front of the audience, but also places to the sides or even behind us. Without being able to use their voices to follow their movements, I completely lost track of the whereabouts of the actors on several occasions. I had to surreptitiously look in the vague direction that my husband's head was pointing in order to pretend to be watching the play, whilst in fact most of the time I was really only listening to it.

A similar thing happened when I was on holiday last year. During a visit to Pompeii, our guide provided us with WhisperSystem headsets through which she was able to describe the exhibits to us without disturbing other tour groups. At first I was enchanted with this kind of personal audio description which worked brilliantly when the guide was close enough to describe what I was actually in front of. But when I wandered away from her in a large open area, her insistent cries of 'I'm over here!' were of absolutely no use to me because I couldn't see her waving arms and had no way of using the direction of her voice to pinpoint her.

I certainly hope to be going to more outdoor Shakespeare again soon. But this particular technological advance means that it will never again be the experience it was when I was a student. Next time I'll go with the knowledge that I won't be able to use my sense of hearing to follow the play. I might catch some of its action in my blurry vision but mostly I'll sit back and enjoy Shakespeare's language, treating the whole performance as a lavish and enthralling open-air radio play.

Sunday, 6 July 2014

Fiction Featuring Blind Protagonists: A Bibliography

My academic research focuses on depictions of blindness in French literature. But I am also collecting examples of contemporary (ie post-2000) Anglophone fiction which features blind or partially blind characters. Below is the list of books I have read so far, along with links to blog posts I have written about some of them. More books will be added as I read them. Recommendations welcome.

  • Comby, Cristelle, Russian Dolls: The Neve and Egan Cases Book 1 (2013) Thriller featuring a sighted student and her blind professor as an unlikely detective team.
  • Doerr, Anthony, All the light we cannot see (Fourth Estate, 2014): epic, beautiful and moving World War II adventure set in Paris, Germany and St Malo. Highly recommended.
  • Elkins, Kimberley, What is Visible (Twelve Books, 2014): extremely carefully researched, beautifully written and enthralling historical fiction about Laura Bridgman, the first death-blind American to learn English. Highly recommended. Blog post here.
  • Ellen, Laura, Blind Spot (Harcourt Children's Books, 2012): young adult murder mystery featuring a partially blind protagonist / narrator.  Blog post here.
  • Foyle, Naomi, Astra (The Gaia Chronicles) (Jo Fletcher Books, 2014): sci-fi / fantasy eco-utopia novel featuring, amongst other things, a character with one eye. Blog post here.
  • Gillard, Linda, Star Gazing (Platkus, 2008); perceptive romance featuring a blind female protagonist and her sighted lover. Blog post here.
  • Green, John, The fault in our stars (Penguin, 2013): teenage cancer coming-of-age love story.
  • Halm, Martyn, V., The Amsterdam Assassin Katla Novels Series: Reprobate (2012); Peccadillo (2012); Rogue (2013): fast-paced and multi-layered thrillers featuring a professional assassin and her blind partner. Blog post here.
  • Harris, Joanne, blueeyedboy (Doubleday, 2010): dark cyber-thriller with a blind protagonist and a surprising twist. Blog post here.
  • Macgregor, Virginia, What Milo Saw (Sphere, 2014): sensitive and clever children's story where events are seen through the eyes of a boy with retinitis pigmentosa.
  • Nussbaum, Susan, Good Kings, Bad Kings (2013): honest and hard-hitting novel set in a care home for disabled teenagers. One of the characters is partially blind. Highly recommended.
  • Sedgwick, Marcus, She is not invisible (Indigo, 2013): young adult mystery thriller featuring a blind narrator. Blog post here.
  • Walliams, David, Ratburger (HarperCollins, 2012): children's adventure featuring a blind villain. Blog post here

Thursday, 26 June 2014

Smart Glasses Phase Two: Adding Detail

This image shows me shopping at the Oxford Cheese Shop in the indoor market. I am in the middle of the picture, gazing down at a mouth-watering display of goat's cheese (my favourites!) I am wearing a chunky black headset with some glasses mounted on the front. I am also wearing a black ruck sack (containing the laptop which is running the cameras on the glasses). To my right is another customer and behind me you can see the television camera which was filming me.

Last August I began working with a research team at Oxford University who are developing some 'smart glasses' which will provide additional information for partially blind users. As I explain here, I was hugely impressed with this new way of navigating and very excited that I could soon be walking around confidently (especially at night, in dappled shade, or in bright sunshine) without bumping into rubbish bins, bollards or other pedestrians. 

Not content with creating an image of the shape, size and position of solid objects, Dr Stephen Hicks and his team are now working on adding detail to the pictures displayed on the glasses. So, as well as telling me that I am approaching a pedestrian, the glasses will now reveal her facial features as well as what she is carrying or wearing. As well as telling me that I am approaching a shop, the glasses will now show me what is in the shop window and might even pick out the shop's name (although the team are still trying to find a camera accurate enough to capture small text).

This week I met up with Dr Stephen Hicks and his team again (along with a film crew from CBS) to discover how the latest version of the glasses might help me run some errands in one of Oxford's busiest and most visually confusing venues, the Covered Market.

I was astonished by the progress that Stephen's team have made in the past year. When I first wore the glasses nine months ago, I felt like I was in a science fiction film. This time it was more like being the heroine in Aha's iconic 1984 Take On Me video. When I put the glasses on I was plunged into an animated world where objects' outlines shimmered wonderfully in black and white.

I have always loved French cheese but tend to find market shopping frustrating. Labels and prices are impossible to see and I can never even tell which products the cheese-monger is pointing to when I ask for advice. I was eager to see if the experience would be any different in my 'smart glasses'.

The first thing that struck me as I looked at the cheeses on display was that I could, for the first time ever, distinguish their different shapes and sizes. My favourite goat's cheese, Crottin de Chavignol, has a distinctive cylindrical shape and I was delighted to discover three lovely Chavignols near the front of the display, all nicely highlighted by the glasses' clever use of dark and light:

This image is a screen-shot taken whilst I was using the glasses to choose my cheeses. Several white lines demarcate shapes on a black background. In the centre of the image, three cylindrical shapes - which I correctly identified as Crottins de Chavignol - are clearly visible.

After making my first purchase, I asked the cheese-monger's advice about another goat's cheese which would nicely complement the first. He recommended a milder one after tasting a sliver, I decided to follow his advice. Unlike Chavignol, this one was not sold in individual portions so I had to decide how much I wanted. Specifying this kind of detail has always been a challenge for me. Usually, when cheese-mongers hold up a piece of cheese, or make a 'bigger or smaller' kind of gesture with their hands, I can see neither the cheese itself, nor their hands. I generally just take what they are offering without being able to tell how much cheese I have in fact bought until I get it home. With the glasses, however, I could very clearly see the outline of the cheese-monger's hands as he held up a piece of Chabichou. I was confidently able to tell him that this was exactly the amount I wanted without running the risk of going home with far too much cheese (or, worse still, not enough!). After the glasses had also helped me check my change, I reluctantly handed them back to Stephen, I headed home with my cheese, satisfied, for perhaps the first time in my life, that I had made some informed shopping decisions based not only on help and advice from others, but also on what I confidently knew was in front of me.

This image shows my purchases with the
distinctive cylindrical Chavignol on the left
. Bon appetit!

Sunday, 22 June 2014

My SDS Conference Experience

The image shows my official 'SDS Summer Camp Minneapolis 2014' 
T-shirt (by Teddy's T's) and my (stylish yet practical) 
Society of Disability Studies conference bag. 

Almost as soon as I began working in the field of Disability Studies, I started hearing amazing things about the SDS conference, an annual gathering of Disability Studies scholars, students and activists organised by the US-based Society for Disability Studies.

This year was the first that I managed to find the time and the money to make the trip across the Atlantic to the conference which took place between 11th and 14th June in sunny Minneapolis. Aside from presenting the work that I have been doing at the Valentin Hauy archive in my paper 'Sustaining Blindness in Literature; Lessons from French History', I was looking forward to using the conference to make contacts across the sector as well as getting a real sense of current trends and tendencies in Disability Studies.

The first thing that struck me as I perused the programme was that SDS is so much more than an academic conference. As well as the scholarly sessions I was expecting - where 3 or 4 academics present a 20-minute paper and then take questions - there was a huge variety of other kinds of sessions offered, including workshops, meetings, performances and even yoga! I attended a very thought-provoking workshop on 'Disability Culture Pedagogy' in which five teachers shared ideas for bringing disability-centred practice into the classroom. In another session on universal design, we heard about how five 'disability objects' have the power to change the ways in which the non-disabled relate to their everyday environment. I was particularly excited to attend a lunchtime meeting on 'Blogging in the Disability Community' where I learnt more about some great blogs (including That Crazy Crippled Chick, Autistichoya, Words I Wheel By, Bad Cripple, Lead On Network, CP Shoes and Claiming Crip) and shared advice, stories and more. I'm hoping that this will lead to an improved blog presence on the SDS website as well as the establishment of an SDS Bloggers special interest group.

Much more than the content of the panels and sessions themselves, it was the atmosphere of the conference which I found most refreshing and rewarding. It was such a treat to be in a place with 400 like-minded people who understand why disability needs to be talked about. When explaining my work to my non-disabled friends and colleagues, I frequently find myself needing to use all my energy merely to justify the importance and relevance of Disability Studies before I can even get on to the actual work I do. Everyone at SDS is already committed to furthering work in this crucial field of study: it was such a pleasure to share my thoughts and findings with a supportive and encouraging community of scholars and students.

Travelling alone to a huge conference can feel isolating and lonely and I was fully prepared to spend my evenings and lunch hours on my own with my kindle. But it turns out that Disability Studies folk love to party! I made my first new friends in the taxi ride from the airport and within minutes of picking up my registration pack I felt bathed in the warm glow of friendship. I spent more time eating and drinking with friends than I would have thought possible and even ended up sharing my room with a conference delegate and her dog one night. As well as catching up with some of the friends I made at last year's History of Blindness conference in Paris, I made some great new friends whom I'm already looking forward to seeing again as we work together on future projects.

Unsurprisingly, this was without doubt the most accessible conference I have ever been to. There was lots of space for wheelchair riders and service dogs and presenters were issued with comprehensive guidelines about how to make their papers accessible to all. All sessions had live captioning and ASL signing, braille, and large-print programmes were available on request. When I arrived I was given a free and extremely helpful 'orientation tour' of all the conference venues and I was sent a detailed description of the layout of my room (including the whereabouts of crucial items like light switches and plugs), in advance of my arrival. But there were times when blind and partially blind delegates did not have access to as much information as their sighted peers. Neither of the plenary sessions were audio-described and as one involved a certain amount of visual comedy, and the other an extensive and detailed powerpoint presentation, I didn't get as much out of either as I would have liked. The Society's 'silent auction' which raises money for scholarships, was very sight-reliant. Even though the organiser was happy to make time to describe some of the items to me, I found it hard to get excited about bid details that I could not see. There was also an extensive book display which was hard for me to properly appreciate. A digital list of auction items and books on display would have been enormously helpful (and presumably very easy to produce.) These are minor quibbles which did not spoil my overall conference experience. (And next year I'll know to specify these needs clearly on the registration form.) But they did make me think about the differences and divisions which exist even within the disability community.

These worries notwithstanding, I had a hugely positive and life-enhancing experience at SDS and I really hope to be able to attend again in Atlanta next year. It truly is a conference like no other and I'd urge anyone working on - or interested in - the field of Disability Studies to try and get there at least once.

Friday, 13 June 2014

Sustaining Disability: Lessons from French History

This week I am honoured to be speaking at the Society for Disability Studies annual conference in Minneapolis. Below is a transcription of my paper along with some useful links and the French originals of the English passages I'll be quoting. (All translations are my own).

Sustaining Blindness in Literature: 
A Lesson From French History

The ideal of sustaining - indeed celebrating - disability for its own sake tends to be thought of as a post-modern notion which is still being explored and argued for by Disability Studies scholars and activists. But nineteenth-century French blind activist and teacher Maurice de la Sizeranne developed a project in Paris – the creation of a book collection devoted to representations of blindness and to books by blind or partially blind authors - which can be seen as a forerunner of twenty-first century attempts to positively sustain disability.

This collection, which is now housed, in far from ideal conditions, in a meeting room in the Association Valentin Hauy, 5, rue Duroc in Paris, France, is an invaluable source of information not only about how the sighted saw blindness and blind people, but also about how blind writers saw, and continue to see, themselves. In its scope and ambition it is comparable to the Jacobus tenBroek Library at the National Federation of the Blind, the Hayes library at the Perkins School for the Blind and the Migel Library which was once at the American Foundation for the Blind and is now at the American Printing House of the Blind. But unlike these American collections, the Valentin Hauy library is the only one of its kind to deal with works in French. Unfortunately, the present directors of the Association Valentin Hauy do not fully appreciate the importance of sustaining historical archives. Not only are the books not being carefully preserved, the library catalogue only exists in print and can therefore only be consulted in person in Paris by people who can access small typefaces or who can take a reader with them. One of my aims in my current research project is to create a digitised version of the catalogue and of the most significant books it contains.

Inspired by the work of Cathy Kudlick and Zina Weygand, whose reclaiming of nineteenth-century French blind writer Thérèse-Adèle Husson has drawn attention to the existence of Sizeranne’s Valentin Hauy collection, my work seeks both to exploit and to sustain Sizeranne’s collection for current and future generations of Disability Studies scholars and students. In my paper today I would like to provide an insight into the collection by discussing how two texts which I found thanks to the Hauy archive encourage us to rethink received notions of value, normality and tragedy, notions, in fact, whose problematic sustainability poses ethical and representational challenges to Disability Studies.

In their work on Husson, Kudlick and Weygand focused almost exclusively on her autobiographical writings. But Husson also wrote sentimental novels primarily intended for the moral instruction of young ladies. In contrast to the modern and something surprisingly enlightened way that Husson talks about blindness in her autobiography (which you can read in both English and French online - her novels often reinforce traditional nineteenth-century myths or stereotypes of blindness (some of which, as David Bolt’s 2014 work The Metanarrative of Blindness shows, still persist to this day) whereby blindness is a tragedy, even a fate worse than death, and the category problematically labelled ‘the blind’ are either sub or super human beings who should be praised, pitied, neglected or avoided.

Indeed this quotation from Simi Linton’s 1998 Claiming Disability shows how widespread this problem is amongst the non disabled:

’Representations of disability and the representation of disabled people’s place in society are largely in the hands of people schooled in a particular vision of disability, one that is saturated with deterministic thinking and characterised by maudlin and morbid sentiments projected onto disabled people’s experience. The insistence not just that disability is an unfortunate occurrence but that disabled people are, perforce, “unfortunates”, seeps into most reports on the disability experience.’

But in one little-known collection of short moral tales, Moral Distractions or Virtue in Action [Le Passe-temps moral ou la vertu mis en action (Paris: Belin, 1837 3rd edition)], Husson presents an intriguingly modern approach to disability which seems to at least in part alleviate Linton’s worries and foreshadow the concerns of this conference by seeking to celebrate disability for its own sake.

In the story ‘The Good Father’s Lesson’ [‘Leçon d’un bon père’], an eleven-year-old boy, Adolphe, is playing in the park when he sees a so-called invalid, later introduced as Jean-Louis Grossard, talking to Monsieur Dupré, his tutor.

The boy’s reaction to Grossard, who has a wooden leg, a patch over one eye and two missing fingers, is blunt but not unexpected given the prevailing attitudes of the time: ‘How I pity you, you poor man’ [p. 208: ‘Combien je vous trouve malheureux.’] And indeed this exclamation echoes Husson’s descriptions of her own plight which she often describes as ‘unfortunate’ ‘pitiable’ and ‘sad’.

But it is Grossard’s response which is revealing: ‘ "Poor man, you say", said the invalid, getting up proudly, "I’ll have you know I have three sons, the oldest of which is no older than you, and if they ever spoke to me like that I would surely disinherit them!" ' [p. 208 : ‘ – Malheureux, dites-vous? reprit l’invalide en se relevant fièrement, j’ai trios fils, dont l’aîné n’est pas plus âgé que vous ; si jamais l’un d’eux me tenait un pareil langage, je crois que je le désavouerais !’].

It transpires not only that Grossard is proud of his disabilities – which he received during his thirty-six years of military service, but also that he wants to expose his sons to the risk of sustaining similar injuries by encouraging all three of them to become soldiers. Adolphe struggles to understand Grossard’s point of view:

‘The fact that this unfortunate man does not complain about his situation shows a resignation I can well understand even if this kind of resignation is very rare, but that he wants to expose his children to the same dangers, indeed that he attaches a kind of glory to this, is, in my opinion, a sign that he is taking his own enthusiasm much too far.’ [p. 210 : ‘que cet infortuné ne se plaigne point de sa situation, c’est une résignation que je conçois très-bien, quoi qu’elle doive être fort rare ; mais vouloir exposé ces enfants à de pareils dangers, à y attacher toute sa gloire, c’est, à mon avis, pousser l’enthousiasme jusqu’ à l’extravagance’.]

Unlike Adolphe, who is clearly horrified by the idea that Grossard’s sons might voluntarily put themselves in a position where they become as disabled as their father, all three boys do in fact want to be soldiers, despite, or perhaps because of, being confronted with their father’s disabilities every day.

Although it is possible to read this story as nothing more than a sentimental celebration of national pride and the glories of war, I would like to suggest that Grossard’s desire for his sons to risk their own limbs and sight foreshadows the late twentieth-century Disability Pride movement and encourages the nineteenth-century reader, who, like Adolphe, may not have been exposed to such feelings before, to think carefully about the assumptions which are too easily and quickly made about the value and quality of life.

Husson’s attempt to celebrate disability is extended in a 1882 story ‘Amongst the Blind’ [‘Entre aveugles’] by nineteenth-century Franco-Italian writer Marc Monnier. In this story the author offers a striking argument in favour of the sustaining of disability. He uses a question and answer style dialogue reminiscent of Cara Liebowitz’s persuasive blog post ‘Explaining Inspiration Porn to the Non Disabled’on her That Crazy Crippled Chic blog: like Cara’s piece, this short story is deliberately didactic and as such is written in a persuasive and provocative way in an attempt to both enlighten and convince an audience who may not have encountered such views before.

Indeed, in this short story, Monnier does a great job of avoiding the ableist traps which Linton highlights in her book.

A painter has come to a rural town to decorate its church when he happens across an old doctor friend he used to know in Paris. The Doctor lives in an institution for the blind [‘hospice d’aveugles’] and takes the painter to visit it. What follows is a dialogue in which the doctor – in a fascinating deconstruction of the medical model - debunks a succession of myths and misconceptions about blindness and 'the blind' voiced by the painter. One example occurs as the painter admires the beautiful scenery and then exclaims:

- How sad it is!
- Why?
- The poor blind people here can’t appreciate it.
- Who gave you that idea?
- Can they see the river?
- No, but they can feel it. They love to come and sit, as you are sitting, on the edge of the balcony.

[p. 238 : ‘C’est triste!
Les pauvres aveugles qui sont ici n’en jouissent pas.
Qui te l’a dit ?
Ils voient la rivière ?
Ils la sentent. Ils viennent, volontiers s’asseoir comme toi sur le parapet.]

The Doctor goes on to explain how the blind residents appreciate the smell and feel of the breezes coming off the river and that they notice sounds that the sighted do not.

The painter functions in this text as a symbol of ocularcentrism – he has an unshakeable belief that sight is the most important and privileged of the senses and that anyone who does not have it is necessarily doomed to have a lesser experience of life and the world. The Doctor counters by explaining that Milton’s gradual sight loss opened him up to a wider world of experiences than sighted poets like Dante, and demonstrates how 'the blind' are better placed to appreciate the finer qualities of poetry, arguing that the newly blind are sometimes so pleased with their new appreciation of poetry that they do not just find consolation but positive joy and pleasure in being blind. Even when the Dr goes on to reverse the normal-abnormal binary by arguing that he knows blind children who see sightedness as a disability, the painter remains unconvinced. Despite the fact that this statement still relies on the binary opposition between disabled and non-disabled which can be problematic, it nonetheless demonstrates a positive approach to blindness which celebrates it for its own sake. The Doctor’s opinions thus hopefully encourage the non-disabled to rethink what they assume to be their own privileged position in the hierarchy of perfection and normalcy.

The twist in the story comes when the doctor suddenly stops referring to the blind using ‘they’ as he says: ‘our other senses become sharper : we learn to listen, something we hadn’t known how to do until now.’

The Doctor’s switch from ‘they’ to ‘we’ in his discussions of the blind is intriguing. At this point in the story we have not been told whether he is blind or sighted but because we are reading from the point of view of the implicitly sighted reader, and because he is a doctor, we assume that he is sighted and lives in the hospice as a professional rather than a patient. His use of ‘we’ challenges the distinction made throughout the text between the two disparate groups ‘the sighted’ and ‘the blind’: it argues that sight or lack of sight is not a defining characteristic but one amongst many elements and that there exists a continuum between people with different levels of blindness or non-blindness. In this way it is a forerunner of David Bolt’s use of the ‘those of us who’ formulation which emphasizes that blindness is not a marker of inherent and inhuman difference.

In fact as the doctor continues to refute the painter’s increasingly ocularnormative assumptions, we learn that the doctor lives in the hospice because his parents, who met in the hospice as blind children, still live there. Before revealing his true identity to the painter, the doctor describes the love affair between these two blind children who were eventually allowed to marry despite some peoples’ concerns over the consequences of allowing two blind people to marry and have children. When the painter asks if their child was born blind, the doctor replies, ‘no more than me’ before revealing that he is in fact the son in question. By refusing to clarify how much the son - and thus the doctor - can or cannot see, Monnier frustrates the painter’s – and indeed the reader’s - attempt to construct a hierarchical relationship between blindness and non-blindness. Instead he playfully calls into question the non-disabled person’s tendency to see disability as lack by rendering the blindness (or not) of the doctor unknowable and thus ultimately inconsequential, indeed irrelevant.

In conclusion, I would like to suggest that the presence of such enlightened ideas within texts written in nineteenth-century France reveals that current arguments about the value of disability have been around for much longer than we might have thought. These texts have, until recently, remained hidden, buried in archives, and ironically inaccessible to the very people who need to use them as evidence against the kind of reductionist views represented in these stories by the boy Adolphe and the painter.

Friday, 6 June 2014

Disability Studies in the Classroom

Earlier this week I ran a workshop at the Higher Education Academy Arts and Humanities Teaching and Learning Conference at the Lowry Centre, Salford Quays. In the session I explained how I argued that disability (and Disability Studies) can offer much to non-disabled students and teachers.. Then my friend and colleague Sherie Griffiths explained how in her work with businesses, she emphasises the importance of audio (rather than visual) communication.

Here is the paper I gave:

When Monsters Talk Back: 

How Disability Studies Can Enhance (Mainstream) Teaching and Learning Strategies

In her 1998 essay Claiming Disability Studies, Simi Linton argues that Disability Studies is an essential component in liberal arts degree programmes. Whilst disability has existed for some time as a module or option on courses in what we might call the applied arts and humanities such as social work, music therapy and teacher training, it is only very gradually beginning to appear in traditional arts and humanities subjects like English, History and Modern Languages. Where it does exist in a university setting is in the student support departments dealing with pastoral issues, extenuating circumstances, special teaching and assessment arrangements. But just because universities are able to support disabled students does not mean that they are working within the framework of Disability Studies. Indeed some support services can unintentionally reinforce negative stereotypes or create unhelpful myths of disability because students seeking such support are always seen as deviating from the norm. Consequently, students with disabilities are often reluctant to ask for help or declare their disability because of fears that this will adversely affect their studies and, more importantly, their career prospects. Disabled staff in HE are even less visible than their students.

Yet Disability Studies is hugely relevant to the humanities because it addresses questions which are central to the ways we understand the world. Its challenge to notions of normality, beauty, perfection, value and usefulness are relevant to everyone, disabled or non disabled.

Today I would like to discuss ways in which content, methodologies and approaches inspired by Disability Studies might be productively used in HE learning and teaching more generally and the impact this might have on both non disabled and disabled students. In so doing we would like to encourage you to question assumptions about ‘normality’ and embrace the 'monstrous'.

I have been registered blind all my life but because I have what ophthalmologists like to call ‘some useful sight’, in one eye, I have, until recently, always operated in a sighted way and done my best to ‘pass’ as a fully sighted person. Whilst at an academic conference two years ago I realised that it was time to embrace my identity as a partially-blind university lecturer and place it at the centre of my academic career. As I read Georgina Kleege's important book Sight Unseen, I realised that blindness was not something to be ashamed of or hidden, but something to be claimed, embraced, celebrated. I gave up trying to 'pass' as a sighted academic and 'came out' as blind to my students and colleagues. 

As well as beginning to focus on disability-related texts and issues in my teaching and in my research, this also meant thinking about alternative strategies for engaging with my students in the classroom. I was finding it difficult to keep my classes focused and make sure that everyone was contributing when I couldn’t make eye contact with my students or see who or where they were. So I began developing alternative techniques: I started asking students to break the habit of a lifetime by shouting out questions and comments rather than putting their hands up. I asked them to call on each other when they could see that someone had something to say, and I got them to say their name before they spoke. At first I found them incredibly reluctant to engage with me in this way but they have gradually become more confident about this interactive and student-led way of learning. As a result we’ve had some great discussions, both inside and outside seminars, I feel like I know them much better than I used to and I've found that they are much more willing to accept that sight-based communication is not the only way of interacting in a classroom – or indeed in life. Consequently they are learning that blindness in particular, – and disability in general - is not necessarily a negative or tragic experience: it is simply a different way of being in the world. They feel more confident about expressing their own needs as learners and they are more accepting of other peoples’ differences. What started as a set of practical solutions to deal with the impact my blindness was having on my teaching has become a whole new approach to difference, ability, the hierarchy of the senses, identity, authenticity, acceptance and even personhood.

One of the advantages of being open and honest about my blindness in the classroom, on twitter and in my blog ‘Blind Spot’ (which I encourage students to read), is that students feel empowered to apply what they have learnt from me and my teaching methods to the materials we study. More broadly, looking at sight and vision differently often helps students to question attitudes to related notions like normality, beauty and perfection. Such discussions also call into question the supremacy of the visual medium of film. After being taught by me, students tell me they feel able to challenge the widespread assumption that disability is about tragedy, struggle, suffering and pity. Not only can I encourage my students to see disability in a positive way, I can also help them question their own preconceptions as well of those of society in general.

One example of the way I use course content to encourage my students to think critically is the film Amélie which I teach as part of a final-year course on representations of Paris in fiction and film. In Jean-Pierre Jeunet's 2001 film, the eponymous heroine devotes herself to a succession of fairytale-Godmother-like good deeds. One such endeavour consists of guiding a blind man across a road and along a busy street before depositing him at the entrance to the local metro station.

As they go along, Amélie gives him a gossipy audio-description of the people and shops they pass. On one level, this episode is a piece of harmless fun. It demonstrates the vibrancy of the rue Lepic area whilst highlighting Amélie's eye for amusing detail and flair for language. But this extract is also problematic when viewed from a Disability Studies perspective. Not only does Amélie fail to ask the blind man where he wants to go, she doesn't give him the chance to get a word in edgeways. She points out the smell of the greengrocer's melon (a smell the man would surely have recognised for himself) without bothering to grab a piece for him to taste. She tells him what is on sale at the butcher's without checking that he has already done his shopping. And she describes delicious-sounding cheeses to him without asking him if he'd like to stop and choose some. I find food shopping in France a beguiling yet frustrating business: there is just too much choice and it all smells so wonderful. I love French cheese but always feel like I am missing out by not being able to read all the labels and make an educated selection - if I met Amélie in Montmatre, I'd insist (if she ever stopped talking) that she describe the cheese to me in mouth-watering detail rather than rushing me past the shop at dizzying speed. But here she keeps the blind man trapped in his own passivity, thus perpetuating the myth that the blind are helpless and vulnerable.

Amélie's actions are certainly well-intentioned, and the dazzling way that the blind man's face is lit up at the end of the clip suggests that Jeunet too thinks that this must have been a genuinely wonderful experience for him. But this way of thinking suggests that the blind are lacking something in their relationship with the world which they must rely on the kind-hearted to give them. That a world without sight is a world without knowledge, sensation and community. That sight is better than no sight. This is perhaps not a surprising reaction from a film-maker. But what if this blind man relates to the world in a wholly different way? What if the pictures he gets from hearing, touching, smelling and tasting the world are just as fulfilling as Amélie's and Jeunet's fetishization of vision? Or, more worryingly, what if Amélie's unsolicited arrival in his life has shown him a world that he was not even aware of? Will he be left happy and grateful to have experienced more fully the world around him? Or will he be left feeling miserable and inadequate, having discovered that others prize most highly a sense that he does not share.
My students only noticed the more problematic elements of this scene after I’d talked to them about my own blindness and used my non-visual communication techniques with them. Where they had once unquestioningly accepted the episode as an example of Amelie’s Princess-Diana-like goodness, they now began displaying impressive levels of critical analysis in their responses to it.

This dual approach, where I talk to students about the practicalities of how their learning will be a different experience because of my blindness, and then ask them to rethink their own understanding of disability through course content, means that they are much less ready to accept the stereotypes and clichés of disability with which popular culture surrounds us.

Tuesday, 27 May 2014

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.

Wednesday, 21 May 2014

David Bolt; The Metanarrative of Blindness (2014)

The image shows a hardback copy of David Bolt's The Metanarrative of Blindness: 
A Re-Reading of Twentieth-Century Anglophone Literature 
(Ann Arbor: Michigan U.P., 2014)

There is nothing quite like the combination of excitement and fear an academic experiences when they come across a book which is closely related to their current research. This is exactly how I felt when I heard about David Bolt's new book, The Metanarrative of Blindness. I was excited by the potential for new discoveries, discussions and connections which this book would provide, yet I was terrified that David's work would somehow duplicate or pre-empt what I am trying to say.

I am pleased to say that by the time I finished reading the book, my fears had vanished and my excitement had more than doubled. This is a fascinating and readable exploration of how a range of fictional and autobiographical texts represent ‘blindness’ and ‘the blind’. Its originality lies not so much in David’s discussions of the texts themselves, but more in his argument that fictional representations of blindness have created a set of myths and stereotypes of blindness which dictate how society treats the blind. Indeed David even makes the important point that blind people themselves have also been unwittingly influenced by such images. David’s book is different from much traditional literary criticism because it constantly compares his own experience of being blind with fictional representations of blindness in order to show the gap between reality and fiction.

Aside from this overarching argument, there are many useful elements in the book and I will certainly be using it with students in my new undergraduate course ‘Blindness and Vision in French Culture’ which I am teaching at Royal Holloway from September .The Introduction provides an excellent summary of the major trends and tensions in Disability Studies in general, with references to authorities including Goffmann, Garland-Thomson, McRuer, Davis, Mitchell and Snyder, and Chapter One explores the politics of blindness in particular. Here, David very carefully explains his somewhat controversial choice of terminology. Unlike many blind activists and scholars, including myself, David rejects the terms ‘the blind’ and ‘blind people’, preferring to use ‘those of us who have or do not have a visual impairment’. There are good reasons for him to do this, not least because his decision highlights the very problems of terminology he is trying to avoid, but I find his choice of words clumsy and at first I was frustrated by how much it disrupted the flow of both his prose and his arguments. Like Georgina Kleege in Sight Unseen, I prefer to proudly reclaim terms like ‘blind’ and ‘partially blind’ as celebrations of a state of sightlessness usually considered negative. But David’s explanation of the reasons behind his choice do make sense. In fact they do a great job of revealing the advantages and disadvantages of the medical, individual and radical social models of disability, the potential pitfalls (or possibilities) of political correctness and the power of even apparently neutral language to influence and (mis)inform. Like myself, David is speaking at the Society of Disability Studies conference in Minneapolis next month: I'm looking forward to discussing his choice of terminology with him and others at the event.

In the rest of the book, David explains how three interrelated neologisms - ‘ocularnormativsm’, ‘ocularcentrism’ and ‘opthalmocentrism’ - both belong to and persist in creating a 'metanarrative of blindness', in other words, 'the story in relation to which those of us who have visual impairments often find ourselves defined, an overriding narrative that seems to displace agency' (p. 10). David's analysis of a wide range of texts shows the persistent presence of a number of myths of blindness which I have also found in some of my nineteenth-century French texts. The ‘seeing-knowing metaphor’ (p. 18), the ‘blindness-darkness synonymy’ (p. 21) and the odd idea that people are either fully blind or fully sighted (pp. 69-70), are particularly widespread. In Chapter Two he shows how the use of labels such as ‘the blind man’ and ‘the blind girl’, creates a belief in blindness-as-difference which sets blind characters apart from the (implicitly sighted) reader. Chapters Three and Four both deal with a range of misconceptions surrounding blindness and sexuality. One of the most interesting arguments in Chapter Three is the discussion of how the recurrent infantilisation of blind characters frequently rests on the misguided assumption that independence is more valuable than dependency. By challenging the independence-dependency hierarchical binary which underpins traditional notions of rehabilitation, lifestyle and progress, David is able to criticise dominant medical and social discourses of disability. This is just one example of how readings of fictional representations of disability can help to problematise current ways of thinking. This is something which I hope my own analyses of blindness in fiction have also been doing.

In the following chapter, David criticises positive stereotyping by showing how 'more than being inaccurate, cultural representations of extraordinary senses serve, at best, to render magical the talent and achievements of people who have visual impairments and, at worst, to justify the ascription of various animal-like characteristics' (p. 67). Chapter Five is an insightful survey of blindness’s association with contagion in science-fiction writing (including readings of key works like H. G. Wells' 'The Country of the Blind', John Wyndham's The Day of the Triffids and José Saramago's Blindness) in which David challenges the recent tendency to read references to successful blind characters as a celebration of disability. Instead he argues that stories featuring blind communities tend to emphasise the differences between the blind and the sighted which in turn suggest that ‘the blind' are somehow inherently different from the sighted. Chapter Six uses the work of French philosopher Michel Foucault to criticise the hierarchical binary relationship between the sighted gazer and the blind object of the gaze whilst Chapter Seven calls the blindness-as-tragedy myth into question.

David’s discussion of a wide range of twentieth-century texts represents an impressive survey of representations of blindness and the blind. I find him most convincing when he compares his discussions of fictional depictions with the lived experience of the blind and the partially blind: his use of examples from his own life, as well as extracts from the autobiographical writings of Georgina Kleege, Stephen Kuusisto and John Hull is particularly informative and should teach sighted readers much about their own misconceptions of blindness. This emphasis on lived experience is important because it demonstrates that the 'metanarrative of blindness' occurs in society as well as – or perhaps even more so than - in fictional representations. David is an accomplished social commentator who uses evidence from twentieth-century fiction to demonstrate how 'the blind' are perceived in modern society.

The main problem I have with David’s book does not in fact have anything to do with blindness as such and it feels a little churlish to mention it here, particularly as it is related to my (in fact unfounded) worries about overlap with my own work. I find the subtitle of the book, ‘A Re-reading of Twentieth-Century Anglophone Texts’ misleading, perhaps even insulting. Whilst the majority of his texts were written in English, David also pays sustained attention to several French authors – Roland Barthes, Georges Perec, Jean-Paul Sartre, André Gide and Jacques Derrida - whose works were neither originally written nor published in English. I am worried by this refusal to acknowledge the linguistic and cultural identities of these texts: not only does this negate the huge influence that French literature and culture has had on the history of representations of blindness, it also reflects a wider tendency amongst anglophone academics, publishers and readers to ‘claim’ such texts for the dominant Anglo-American canon when it suits them to do so. I am pretty sure that my French friends and colleagues would be outraged to see French classics like La symphonie pastorale and Histoire de l’oeil described as ‘anglophone’!

This niggle notwithstanding, this book is a crucial contribution to 'Blindness Studies' and comes very highly recommended.

Thursday, 8 May 2014

Zina Weygand receives the Legion of Honour

Zina Weygand proudly sporting her decoration during her acceptance speech

I first met prominent historian and doyenne of 'Blind Studies', Zina Weygand in February 2012 and I was so impressed by our encounter that I wrote about it in one of my earliest blog posts here. Since that memorable meeting, I have spent many hours with Zina: we worked closely on the organisation of the International Conference on the History of Blindness and the Blind and enjoy catching up over tea and cake whenever I visit Paris.

Last week I was honoured and delighted to be invited to the ceremony in which Zina was awarded the Ordre de la Legion d'honneur. This honour, the highest that can be awarded to a French citizen by the French Republic, is hugely prestigious, and was bestowed on Zina by Jean-Louis Chambon, prefet honoraire, for the illuminating and ground-breaking work she has done to bring the history of blindness and the blind to international prominence. 

As well as being a renowned academic, Zina is also, and above all, a gifted people-person. She loves putting researchers in touch with each other and has built up an impressive network of contacts across the globe: indeed she has provided me with many invaluable contacts in the relatively short time I've known her. Everyone I talked to at the ceremony refereed to her generosity of spirit, the genuine pleasure she gains from meeting people working on blindness and the blind, and her unfailing ability to make connections, create projects, initiate and maintain lasting friendships and energise those around her. 

There is no doubt that my work on blindness would have been impossible without Zina's advice, guidance and support. The ceremony on 29 April was a moving and fitting tribute to her extraordinary life-work. 

Sunday, 27 April 2014

Skiing Blind

As my adventures at Go Ape show, I have always been a bit of a dare devil. But despite my love of adrenalin-fuelled activities like ice-skating and trampolining, I always assumed that my partial blindness would prevent me from taking part in really dangerous sports like skiing.

When I first 'came out' as blind at work and started using my white cane to get around campus, a colleague surprised me by recommending that I take my family on a skiing holiday. Her insistence that skiing is an essentially tactile sport which relies much more on touch and even hearing that it does on sight intrigued me and after watching some blind skiing online, I decided to give it a try. So last week me, my husband and our two boys travelled to Saas-Fee in the Swiss Alps to learn to ski.

Everything about skiing was completely new to me. I had never held a pair of skis, never been to a ski resort and I soon discovered that I didn't even know how to get into my salopettes. My first challenge, aside from familiarising myself with the layout of the hotel, was understanding what equipment I needed and how it worked. The first thing we did when we got to Saas-Fee was visit the ski-hire shop to pick up our boots, skis, poles and helmets. Luckily there were plenty of staff on hand to help us and I had been forewarned to bring all our height, weight and (continental) shoe measurements with us. Trying on ski boots was an adventure in itself. They come with a bewildering array of fastenings, straps and layers of padding and I soon discovered that putting on ski boots is a long and complicated process.

Properly-fitting boots are crucial for confident and controlled skiing 
because heels and toes are often used to control turns and improve balance.

Having managed to find some boots that fitted, I did not pay very much attention to the skis themselves. This turned out to be a mistake. Although my white skis looked very stylish as I carried them back to the hotel, it was only the following morning that I realised that they were not very easy to see on the snow! During the week, my biggest problems (and toughest tumbles) occurred when my skis crossed without me noticing. Next time I go skiing perhaps I'll try and get myself a bright orange pair instead.

When we finally got all our kit back to the hotel, I was relieved to find large and well-lit storage areas for boots, helmets and skis. Sighted readers might find this trivial, but one of my main worries before our trip had been what if I struggled to find my unfamiliar stuff (which looked and felt a lot like everyone else's stuff) in a badly organised and jumbled boot room. Happily there was enough space for me to find a familiar corner in which to keep my gear and this made getting ready each morning a little bit easier.

On our way to meet our instructor, I discovered that walking in ski boots is almost as tricky as learning to put them on. Even though our hotel was only a couple of minutes from the beginners' slopes, it felt like a long and difficult journey over bumpy snow and patches of ice. Without my white cane to guide me the unfamiliar route made me feel lost and disorientated, especially as I wasn't yet used to wearing my OTG (over-the-glasses) goggles. I arrived at the meeting point flustered and hot (which further steamed up my goggles) and was beginning to think that learning to ski hadn't been such a great idea after all.

When Simon and I booked our holiday we signed up for regular group beginners' lessons but as I watched the 2014 Winter Paralympics and saw the specialist guiding needed by the partially blind skiers I began to worry that group lessons would not give me the support and attention I would need to build my confidence. After several phone conversations and email exchanges with Esprit Ski in England who were in turn liaising with the hotel manager, the resort rep and the ski school in Saas-Fee, I was delighted to discover that there was a ski instructor in the resort who had worked with blind skiers before and who would be able to give us lessons for the whole week. 

Simon and I with our wonderful instructor/guide Jolanda: 
note our smart 'blind skier' bibs.

When we met Jolanda Stettler I was immediately struck by her openness and tact. One of the first things she did was ask me whether I would be happy to wear a 'blind skier' vest over my jacket. Given the stigma that still surrounds blindness, it must have been difficult for Jolanda to bring up this tricky subject which can make blind and partially blind people uncomfortable. A couple of years ago this suggestion would have upset me, but since then I have done a lot of work on feeling happy with my white cane and proud of my blindness and I was delighted to wear the vest. It immediately made me feel safer and more secure: I hoped it would remind other skiers to keep out of my way and encourage the ski lift attendants to give me a bit of extra help with those tricky drag lifts...

Jolanda's next job, after guiding me onto the nursery slopes, was to help me get into my skis. This was another challenge. Not only did I find it difficult to tell the front of my skis from the back, I found it impossible to position my boot so that it would easily snap into place. At first I was annoyed that this part of skiing seemed to depend on having enough vision to see the boots and skis. How would I ever become an independent skier if I always needed help before I even got started? But as the week went on, and I got more practised at putting on my skis, I found that I didn't need to see my skis or  boots at all. Once I'd felt my toes into position, trial and error helped me locate the right place for my heel. And if I'd judged it right, a very satisfying click told me that I was good to go. (Later in the week, after watching me struggle with the fiddly task of removing skis by fitting the ski pole into the back of the binding, Jolanda also taught me an alternative 'blind-friendly' way of removing each ski with the other boot.) 

After so much complicated preparation, gliding down a gentle slope on my skis felt easy.

The gymnastics I did as a child taught me balance and co-ordination and I have surprisingly good spatial awareness. Once Jolanda had shown me what position my legs and feet should be in, how I should lean and which parts of the skis should touch the snow, I quickly got the hang of turning and stopping.

And my colleague was right! Skiing is a very tactile sport. Even if I had been able to see my skis I wouldn't have wanted to look at them: it is much better to point your head in the direction you want to travel, and rely on the movement of your body to steer the skis. And feeling the contact between skis and snow helped me tell what kind of snow I was dealing with, which in turn told me how much weight to put into my turns.

As I became more confident on the snow I was more and more pleased that we had decided to opt for private lessons with an instructor/guide. Skiing itself might be a tactile sport but navigating down the slopes certainly isn't. Even with my glasses and goggles, I quickly discovered that I could not see well enough to distinguish the sides of the piste, other skiers or changes in the snow's consistency. Even on a slope I knew well I could rarely tell where I was in relation to its top or bottom. Without my guide I would not have got down even the gentlest of slopes. But when I was following Jolanda's bright orange guide vest and listening to her instructions I didn't have to worry about where I was or where I was going. Jolanda's movements and the sound of her voice and skis told me when to turn, when to be in parallel or snowplough and when to stop. I knew she would get me down safely. And she always did. And in the afternoons, when Jolanda was working elsewhere, Simon quickly got the hang of guiding me too.

Most ski instructors would be (understandably) nervous about teaching a partially blind beginner. After all, skiing is a dangerous sport and it is easy to imagine how a skier who cannot see where she is going could be a risk to herself and others. But Jolanda didn't seem nervous at all: her previous experiences with blind skiers had given her a clear sense of what I was able to do and whilst she never took any risks, she did encourage me to attempt more challenging lifts and runs every day so that by the end of the week I felt like I had made real progress. I was never terrified or panicky, but I was never completely in my comfort zone either: as soon as I felt confident doing something, we moved on to something harder.

I am not (yet) an amazing skier. I still like to go quite slowly and am cautious with my turns. But I can ski. And when I am following a guide I can reasonably confidently go down blue (beginner) slopes without stopping or falling over. I am so glad I took my colleague's advice. Learning to ski was an exciting, empowering and liberating experience which has given me a powerful feeling of self-confidence and a real sense of achievement.

With thanks to Abigail for giving me the idea in the first place, Soph and Dom for making it happen, Simon for being there with me the whole time, the staff at Esprit Ski and the Hotel Annahof for all their help, hard work and very welcome food and drink, Raffy, Zak and Cesca for getting me back out on the slopes every afternoon, Merri for cuddles and walks in the snow when skiing got a bit much, and of course Jolanda for her skill, enthusiasm, patience, generosity and sense of humour as well as for the photos.


Thursday, 20 March 2014

Disability in Fiction: Astra

Astra by Naomi Foyle (Jo Fletcher Books, 2014)

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

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

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

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

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

Tuesday, 4 March 2014

The LEGO Movie: Being Blind is Awesome!

[Spoiler Alert: Read with caution if you haven't seen the film]

The LEGO Movie is one of the best films I have ever seen. It is clever, funny and beautifully designed. It is also a wonderfully surprising celebration of the power of blindness.

One of the film's main characters, Vitruvius (voiced by Morgan Freeman), is a wise and heroic wizard who guides the other 'Master Builder' characters, in particular the troubled hero Emmet, through the film. Like Dumbledore, (who in fact makes a cameo appearance in the film) he even returns in ghost form to help his charge. Vitruvius loses his eyesight early on in the film and as well as containing elements of Dumbledore (and his alter ego Gandalf), he is clearly created as a homage to Tiresias, the 'blind seer' whose lack of actual sight gave him clairvoyant powers. Some Disability Theorists might argue that this association between blindness and insight (an association which we also find in Victor Hugo's character Déa from L'Homme qui rit), downplays or even denies the physical experience of being blind by privileging blindness's symbolic meaning above its lived reality. And it is true that aside from his glowing eyes, it is hard to tell that Vitruvius is blind. He does not have a guide dog or a white cane (although his lollipop-stick staff might double as the latter) and his blindness is conveniently forgotten by the film-makers during a visual gag when he confuses Dumbledore with Gandalf because they look so similar (but importantly sound completely different). Perhaps this is why members of the LEGO online community fail to appreciate the positive side of blindness when they describe Vitruvius as 'a talented piano player, despite being blind'.

Braille cell or LEGO brick?

If the film's central blind character may not immediately appear to function as a celebration of the positivity of blindness, the overall message of the film is resoundingly anti-sight and pro-touch. Like 'The Man Upstairs' (Finn's father), the film's evil villain, Lord Business, wants to create a perfect LEGO world where each construction is permanently glued into place. This idealised LEGO landscape is adorned with 'Do Not Touch' and 'Hands Off' signs. In this impossibly perfect universe everything is made exactly according to the instructions, touching is not allowed, LEGO is to be admired not handled, the visual is celebrated and the tactile scorned. On the other hand, the Master Builders - who are of course led by Vitruvius - believe that LEGO is made to be played with, not glued into perfection. As Vitruvius's presence reminds us, you do not have to be sighted to enjoy LEGO. Indeed LEGO is essentially a tactile medium. Surely it is no coincidence that the iconic 2 x 6 LEGO brick has the same pattern of dots as the Braille cell. Despite the film's failure to produce a positive blind role model in Vitruvius, the LEGO Movie's celebration of the potential of tactility certainly suggests (to paraphrase the film's catchy soundtrack) that 'Being Blind is AWESOME!!!'.