The Voice Part 3: I Didn't See that Coming

I do not usually enjoy reading autobiographies and I am especially suspicious both of 'triumph over tragedy' disability narratives and of autobiographies written in haste after the subject has been shot into the spotlight by winning a TV talent show like The Voice. So it was with some trepidation that I curled up with the kindle version of Andrea Begley's account of her rise to fame, I Didn't see that Coming. I have already written two posts about how Andrea Begley's partial blindness has been depicted and discussed: the first when I initially came across her in the show's so-called blind auditions and the second as she unexpectedly (and somewhat controversially) went on to win the competition. In both these posts I made the point that the public have a much more disabling attitude towards blindness in general, and Andrea's partial blindness in particular, than she herself does. I am delighted to report that Andrea's book is exactly what I hoped it would be: a humorous, clever and personal debunking of many of the myths of blindness which are still so inexplicably embedded in society's collective consciousness.

Andrea is refreshingly honest, practical and open not only about what she can and cannot see but, more interestingly, about how she feels about her partial blindness. She is never sad, self-pitying or mournful. Her partial blindness is never a 'tragedy', a 'hurdle' or a something to be 'overcome' or 'cured'. Mostly it is not even an issue and occasionally it is an 'annoyance' or a 'frustration' which Andrea approaches with a wonderfully self-depreciating mixture of mischief and fun. But Andrea is very careful to emphasise that she is not a superhero. She has no extraordinary powers of hearing and is not one of those relentlessly perky 'super-crips' who feel the need to over-achieve as a kind of 'compensation'.  She is simply hard-working, well-supported and ambitious and she has got where she is through a combination of an unforgiving work ethic, lots of luck and a fair bit of talent. Anyone who voted for Andrea to win The Voice out of misplaced feelings of sympathy and pity has completely misunderstood what her partial blindness represents.

It is hugely important to have disabled people in the public gaze. But this is not so that other disabled people can feel 'inspired' to 'overcome' their own particular 'struggles'. Such an approach serves only to further stigmatise disability by distancing it. Rather, we need people like Andrea to write their stories so that the so-called 'able-bodied' can begin to understand that disability is not a necessarily negative condition deserving of pity and condescension. I think Andrea's book should be required reading for anyone who has ever looked at a disabled person with sadness. Not only does it answer many of the 'Is it okay to...' questions which worry the non-disabled, it also completely demystifies life with sight loss.

If I have one criticism of Andrea, it is that she readily admits that she relates to the world in a sighted way. She went to a mainstream school and has always learned by sighted methods where possible. She would still rather not use a white cane and has never learnt Braille. She does now use audio books and screen-reading software but I suspect that she would rather describe herself as 'partially sighted' than 'partially blind'. Andrea's resolutely sighted approach to the world is further evidence that we live in such an oculocentric world that even the partially blind feel the pressures to conform to sighted ways of being. But now that she is in such a prominent and powerful position, Andrea has the chance to further dismantle the sight-based myths which her book begins to attack. I'd like to see her wield her white cane in public more proudly and celebrate the power of the tactile by learning Braille.

Blindness in Fiction 7: Blind Spot by Laura Ellen

This novel is the first novel I have come across to feature a partially blind protagonist / narrator. 5 of the 6 other novels I have reviewed so far feature totally blind central characters and the 6th, the Adrian Mole series, only makes passing reference to the diarist's partially-blind friend Nigel. It is easy to think we know what it is like to be totally blind. We think that by closing our eyes we get a glimpse into the dark world of the unsighted. In fact, most people who appear blind perceive some light or movement. And the minority that see nothing at all do not necessarily experience the world as blackness. But for reasons that I have yet to fully understand, this is the image of blindness which popular culture favours. It is much more difficult to imagine what it is like to be partially blind.

Laura Ellen's first novel Blind Spot offers a detailed and emotionally-charged insight into the world of a teenager with juvenile macular degeneration. The narrator's descriptions of unknowingly walking past friends, struggling to read the board or take notes in class, fumbling with a tricky locker combination and failing to find people at lunch are a strikingly realistic portrayal of what it can be like to live with low vision in a sighted world. At the beginning of the book, Roz is not a particularly agreeable character: she is superficial, self-absorbed and aggressive. But worst of all, she is in denial about her blindness. She has internalised the American High School dream and desperately wants to 'pass' as 'normal'. She jumps at the chance of dating the captain of the hockey team and despises the other students in her 'Special Ed' class. In short, she is ashamed of her disability. She stubbornly hides her eye condition from her classmates and would rather appear rude, stupid and stand-offish than blind.

I found it difficult to like a protagonist who seemed to so uncritically subscribe to the 'blindness as tragedy' school of thought. But Roz's character was more complicated than I first gave her credit for and the book is about much more than her eyes. She was not in fact in denial about her eyesight, but shrewdly aware of high school society's inability to cope with difference and more ready to play along than to attempt to change the system. Nevertheless, her belief in Ruth's ability to get a job in the 'real world' testifies to her pro-disability-rights tendencies and her desire to understand how Tricia died crucially demonstrates her conviction that all individuals matter equally.

Aside from noting how the politics of blindness were explored in the novel, I was especially interested in how Roz's macular degeneration affected both her narrative and her crime-solving abilities. In a book about challenging both literal and metaphorical perception, it would have been easy for Ellen to equate Roz's poor vision with lack of knowledge, poor perspective or flawed insight. But although Roz's inability to distinguish faces, cars or the details of a photograph meant that it was hard for the authorities (and sometimes the reader) to believe her version of events, in the end it was not what Roz could or could not see which mattered, but what she did about it. Ellen seemed to be saying in fact that good eyesight was overrated, and that it was certainly not a necessary prerequisite to successful sleuthing.

This book could have become a saccharine story of redemption and acceptance. Instead it has no real conclusion. The mystery of Tricia's death remains unsolved and Roz's attitude to her disability unresolved. As well as perhaps promising a sequel, this lack of closure serves to highlight the ongoing nature of Roz's relationship with her blindness. Whether she likes it or not, she will spend her life answering the sighted person's favourite question: 'But what can you actually see?' and the answer she gives will change on an almost daily basis.  Her desire to 'pass' will co-exist with her need for magnifiers or white canes which mark her out as different in a world still obsessed with the normal.

It is wonderful to find a mainstream YA novel which features a partially blind protagonist. Disabled characters are still woefully absent from fiction and when they do appear they tend to reinforce rather than challenge stereotypes. This novel is refreshingly free of disability preconceptions and comes highly recommended.

Audio Description (3): Even better for Action

Katniss looks towars two other tributes at the start of the 75th Hunger Games.

I had my first audio description experience around 18 months ago and - as this post shows - I was absolutely blown away by it. Since then I've had a couple of disappointing experiences where the AD didn't work: as it only starts at the beginning of the film it is always too late to fix it if you don't want to miss the beginning. After a very helpful email exchange with Odeon, we have realised that AD works best in certain, quite specific, parts of the auditorium. Last night, when I picked up my AD headset, the usher was enormously helpful. He accompanied me to the auditorium, showed me where I should sit for best coverage and came back at the start of the film to check everything was working. I am so glad I persevered with AD and didn't just give up: if I hadn't got in touch with the cinema and asked them to find out which seats have optimum coverage I wouldn't have had such an amazing cinematic experience last night

I already knew that AD works brilliantly for costume dramas but last night I discovered that it is also a fantastic addition to fast-paced action films. Because it is set in a futuristic and imaginary world, The Hunger Games: Catching Fire is full of objects, people and settings which are unfamiliar and therefore difficult to guess at. When I use my eyes to interact with the world I rely mainly on context to tell me what things are. If I see a dark, circular shape on my son's bed, I am pretty sure it is either our cat or his folded up dressing gown. But if I saw the same shape lying on, say, the floor of my office at work, I would have absolutely no idea what it was until I touched it. The AD in The Hunger Games told me about all kinds of key plot-related objects - such as brooches, bracelets, lockets, axes and red-tinged drinks - whose significance I would otherwise not have understood.

I knew that AD would also be incredibly helpful for identifying the various tributes. As they were all wearing the same uniform during training and in the arena, it was impossible for me to tell them apart. And when the dead tributes were projected into the night sky, my describer helpfully told me their names and districts. (I have it on good authority that sighted viewers did not always have access to this information). But I was surprised to find that AD really comes into its own during fight scenes. The speed and darkness usually associated with such scenes make them impossible for me to follow. I tend to sit back and enjoy the general atmosphere knowing that the outcome of the fight will become clear at some point. With AD I was completely immersed in the action, utterly captivated and more involved in a film than I have ever been. It makes we want to re-watch every single film I have ever seen to fill in all the gaps I now know there must be.

 It is hard to describe the effect AD has on my film-going experience but I suspect it might be compared to the addition of 3-D. For obvious reasons I have no idea what the appeal of 3-D is, but I imagine that it gives the sighted viewer the kind of ultra-intense cinema experience that AD gives me. AD is neither intrusive nor unwieldy. It is an art form in its own right, an enhancement, an amelioration. It becomes part of the film itself, enhancing the action like a good football commentary might. It more than doubles the pleasure I get from a film. My only regret is that it does not also exist in real life.

Blindness in Fiction 6: She is Not Invisible

She is Not Invisible  is a Young Adult mystery thriller by Marcus Sedgwick. I was keen to read this book when I heard - via the facebook Disabookability group - that it is narrated by blind protagonist Laureth. Books with blind narrators are relatively rare. In my experience, most books featuring blind characters are narrated by a sighted person who describes the blind character from a sighted person's point of view. It is wonderfully refreshing for me to read a book whose vision of the world is close to my own. Not only is Laureth very attuned to the smells and sounds which surround her, she is also wonderfully self-aware. She is thoughtful and articulate about what it is like to be a blind person in a sighted universe, and she is particularly interesting when she talks about what she feels she has to do in order to make sighted people feel more comfortable around her.

By the end of the novel I was utterly in love with Laureth. And I really hope she reappears in future Sedgwick novels. But for the first few chapters I was very angry with her. Laureth spends the early part of the book pretending she is not blind. She goes to the most confusing of public places, an airport, and attempts to 'pass' as fully sighted. When I first read these parts of the book I was furious. Why, I thought, is she so intent on hiding her condition? Is she ashamed of being blind? Has she internalised all the stigmas associated with blindness to such an extent that she refuses to accept her own reality? Doesn't she realize that this kind of denial emphasizes the 'blindness as tragedy' trope which is all too common in both fiction and the media? Doesn't she know that a white cane can function as a badge of honour, not a symbol of shame? Doesn't she realize that by 'outing' herself as a strong, funny, capable and caring blind girl she could teach every sighted person she meets not to judge people on how they do (or do not) look?

I very nearly gave up the book at this point. But I was already hooked by the beguiling storyline. And I was curious to see how far she could get. I'm glad I persevered. As the book goes on it becomes clear that Laureth has very good reasons for hiding her blindness. And these are related to plot rather than to her own identity. She is in fact a mature, thoughtful, adventurous and practical teenager who will do anything to keep her family together. Throughout the book the author throws in a number of apparently incidental details which subtly tell us that Laureth lives a life which is just as fulfilling as that of any other sixteen year old.

More than Laureth's healthy attitude to her own blindness, what I like most about this book is its plot. Without giving anything away, I can say that the plot is fast-moving, complicated and utterly compelling. It is the kind of book which keeps you reading and which leaves your head spinning with its own possibilities. What is more, as soon as you have finished it you will want to turn straight back to the beginning and read it again. But what I like best about the plot is that it is not dependant on Laureth's blindness. Unlike so many books which feature blindness, the essentials of the story would have been more or less the same had Laureth been sighted (except, perhaps for the presence of her two travelling companions). Aside from the scene in the hotel room in the penultimate chapter, where Laureth uses her blindness to her advantage, the action would have run more or less the same course. This is important because it shows that blindness is not the be all and end all. It is one element which can influence a person's behaviour. But it is not the over-arching defining feature. Laureth is blind but she is so much more. And in the book we learn that her blindness is not the most important thing about either her or her story.

I do have some misgivings about the book's portrayal of blindness. Although I can now see why Laureth hides her blindness at the beginning of the book, I still don't understand why she doesn't use a white cane later on. It felt odd to me that she didn't refer to one at all, not even to explain why she has chosen not to use one. Unlike her brother, Laureth is a bit of a techno whizz yet it doesn't occur to her to use the GPS function on her iphone (which would have been especially handy in NYC). The author has clearly researched his topic well and this book does much to undermine several stereotypes of blindness. But in his Author's Note, when he thanks the students and staff of New College Worcester, he makes one slip which I'm sure Laureth would have hated. He describes this school for the blind as 'a genuinely inspiring place to visit'. 'Inspiring' is one of the words disavowed by Disability Studies because it tends to paint disabled people as either awe-inspiring heroes or victims to be pitied, and in both cases as unfortunate beings who spend their days overcoming obstacles and battling against adversity. This depiction is in danger of aligning itself with the 'blindness as tragedy' myth which this brilliant book does so much to dispel.

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.

But What Can You Actually See?

What I see on a sunny day

Sighted people are often curious about what I can and cannot see. I am not completely blind but I am not completely sighted either. With my reading glasses I can read very small print but I cannot tell the difference between buses and lorries after dark. What I see varies constantly: it depends on whether I am somewhere familiar or foreign, on levels of light and dark, on the weather, on how tired I am, on how much reading I've been doing. This is unsettling for those who like to put people into categories. One day I am pretty much blind; the next day I am mostly sighted. This is confusing, but it also makes my life exciting. I never quite know what I'll be seeing from one day to the next.

Today is the kind of crisp, clear, cold November day that I used to love. The kind of day when colours seem extra vibrant and leaves crunch underfoot. I used to love days like this because the extra light in the air seemed to make my vision sharper. It was on days like this that I felt most sighted. But in the last two years, my attitude to crisp autumn days has changed. At the moment my underlying eye condition, coloboma, which has been relatively stable all my life, is being complicated by cataracts in both my eyes. With eyes of standard shape and size, the removal of cataracts is a routine operation. But this operation becomes highly complicated and risky with eyes like mine. So I am waiting until the cataracts have taken away all my sight before I have the operation. That way, if things don't go as planned, I won't have any vision left to risk.

Having cataracts does very odd things to my vision. Everything now has a slightly yellow tinge and I can't tell the difference between black, blue, purple and grey as well as I used to. Instead of entering my eyes, light bounces back off them as if they were made of shiny metal. The resulting dazzle and glare fills my eyes with whiteness and hides everything else from view. Cars, trees, pavements and people vanish into a bright white mist. But as soon as I step into shadow everything reappears, paler and more misty than it used to be but still mostly recognisable.

Dark winter nights are just as much of a challenge as bright winter days. I am at my blindest after dark. My eyes might look like cat's eyes, but they have none of a cat's night vision. After dark my problems with dazzle and glare are compounded by the halos and starbursts which surround any light source. These effects, illustrated here, convert my nighttime world into a kind of other-worldly psychedelic wonderland.  On balance I rather like the disorientating effects of cataract vision. Now that I have lots of practical solutions for doing what I want to do I like being living proof of the subjectivity of vision.

The Unintended Consequences of Mobility Training

There is no doubt that the thing I hated most about being a partially blind pre-teen was the dreaded 'mobility training'. When I was 11 years old, a well-meaning lady (let's call her 'Doris') started coming to my house once a week in an attempt to teach me how to get around. I loved the idea of Independence and couldn't wait to be allowed to walk home from school alone or go into town on my own, but I hated the reality of the training. It felt so infuriatingly patronising to be taught how to use a bus timetable or read a metro map. When I'd mastered these basics, 'Doris' would devise complicated journeys around the Tyne and Wear public transport network for me to complete whilst she followed at a distance to make sure I didn't come to any harm. I couldn't bear being watched by her and after one particularly nasty 'spying' incident I only reluctantly (and tearfully) agreed to continue with the training because I knew it would lead to my much-craved Independence.

Thirty years later I still feel angry when I think back to those sessions, but I can now also appreciate their consequences. Thanks to 'Doris' I have always been a confident and proficient traveller. I have no qualms whatsoever about undertaking long journeys alone, have travelled solo in the UK, Spain, France and the US and have always felt a thrill of excitement in the bustle of a busy train station. Perhaps this is why I do a job that involves around 15 hours of bus and train journeys each week.

My 'mobility training' certainly taught me how to find my way in both familiar and unfamiliar settings but I wonder now if it had a more profound effect on my approach to travel. I love getting to grips with unfamiliar public transport networks and can be quite geeky about the intricacies of various bus routes. Before undertaking a journey to a new place I can spent hours studying timetables, route maps and plans in an attempt to create a mental map of the journey before me and once I'm on my journey I love the sense of community and belonging that public transport brings. When most of my friends and colleagues would automatically jump into a taxi in an unfamiliar place, I feel a huge buzz when I get where I'm going via complicated combinations of buses, trains and trams. It may take longer, but it is so much more satisfying. Resorting to taxis feels like failure to me. So each time I successfully complete a tricky journey and triumphantly conquer another public transport network I think that just perhaps the 'Doris' sessions were not as bad as I thought at the time. Would I have become such a happy and enthusiastic traveller without her?

BBC Radio Four

Me and Jenni Murray just after my interview. 

Many thanks to fellow guest and children's book illustrator Sarah McIntyre for taking this photo.

Sarah has written a great account of our Woman's Hour adventure here. 

I have loved BBC Radio 4 all my adult life. We have at least six radios in our house and I increasingly listen via my phone wherever I am. Radio 4 wakes me up every morning and accompanies me on car, train, bus and plane journeys. It has stopped me feeling lonely in hotel rooms from Salford to Salt Lake City and keeps me amused when I am cooking. I even listened to Radio 4 whilst giving birth to my two sons.

Yesterday was quite simply one of the most exciting days of my life. I moved from passive listener to active participant as I was interviewed by the majestic Jenni Murray on Woman's Hour (from 30:30). I was talking about my take on the What I See project and the ways modern society is obsessed with how we look.

It seemed particularly fitting that I was arguing for a rethinking of the hierarchy of the senses via a largely sightless medium. Radio 4 is an essential part of mainstream British culture. And yet its enduring hold over the nation testifies to the fact that sight is not a necessary part of our lived experience. Yesterday I realised that radio journalists and producers build a subtle kind of audio description into everything they do. Places and people are announced as a matter of course. Every time Jenni Murray asked me a question she prefaced it with my name. Her primary reason for doing this was to remind listeners who I was and to differentiate my voice from that of my fellow interviewee Edwina Dunn. But Jenni's technique was crucial to me for another reason. Because I cannot always see enough to know when someone is addressing me, I rely on the kinds of audio prompts which are much more common on the radio than in real life.

The Woman's Hour team: 

Jenni Murray in the centre, and from the left Assistant Producer Jane Worsley, Producer Bernadette McConnell, fellow guest Sarah McIntyre and me. 

There is no doubt that modern society places too much emphasis on the visual. And this has the unpleasant consequence of marginalising the blind and the partially blind. But my experiences yesterday reminded me that anyone who engages with radio - as listener, presenter, producer or technician - already has an intuitive appreciation of the non-sighted world. Anyone who listens to the radio already knows what it is like to be blind: it is not a tragedy, it is just a different way of being.

What I See when I look in the Mirror

According to its press release, the What I See Project is 'a global online platform that recognises and amplifies women's voices'. I was delighted to be asked to be part of this fascinating project, but I was also worried by the project's apparent emphasis on the visual. As I say in my video reflection, modern society's obsession with how we look has the unintended consequence of privileging sight over all the other senses. This in turn has the nasty effect of turning blindness into a tragedy. 

I have found that society's obsession with the misery of blindness makes it very difficult for the blind and the partially blind to feel happy and confident about themselves. When pity is the prevailing emotion you encounter in strangers, it is easy to think of yourself as a victim. Self-pity is a destructive state of mind; it leads to low self-esteem and depression. But until society stops pitying the blind, how will the blind learn to stop pitying themselves?

I want to use my part in the What I See project to encourage women to think critically about our relationship with sight. Why do we care what we see in the mirror? Why is appearance to crucial to us? Do we really learn important details about a person from how they look to us? My face-blindness means I cannot recognise my family, friends and colleagues by their facial features. Instead I recognise them by their general shape, their unique style and their voice. This can have its disadvantages but it also has its uses. It constantly reminds me that we are much more than what we appear to be: we have experiences, history, memories which are not necessarily visible on our surface. As another contributor to the What I See project, Karen Morris at Beyond the Bathroom Scale reminds us, bodily appearance is overrated. Karen writes eloquently about the need to embrace the reality of how our bodies look here.

The communicator videos and ambassador profiles on the What I See webpage are reassuringly resistant to the purely visual. It turns out that I needn't have worried. Most women see much more than their surface appearance when they look in the mirror. But society at large is still obsessed with sight. Hopefully this will change in the wake of this exciting project.

Upload a video describing what you see when you look in the mirror and you might win an invitation to the What I See launch event at the Science Museum on October 1st.

Touching the Book

W. Ridgway after George Smith,

 Light and Darkness, engraving, 1871 (Wellcome Library)

Louis Braille is one of the heavyweights of blind history. Along with Helen Keller he is the blind person children are most likely to learn about at school and as MIchael Mellor recently demonstrated, he is (rightfully) celebrated across the world for the creation of his eponymous writing system. But this overwhelming focus on Braille’s achievements gives us a rather unbalanced view of how tactile reading and writing systems developed in the nineteenth century. The Musée Valentin Haüy in Paris, and now the Touching the Book exhibition currently running at Birkbeck College, London, tell a rather different story.

The visitor to both exhibitions is immediately struck by the variety of different reading and writing systems on display. Before Braille was eventually adopted as the universal language of the blind in the late nineteenth century (and even later in the United States), books were being produced in a number of different tactile alphabets. In Paris, Valentin Haüy developed a raised-letter system based on the Roman alphabet which was used for some years at the Institut National des Jeunes Aveugles even when Braille himself was a teacher there. In the UK, five or six alternative systems competed for supremacy, each being championed by a different blind school, church organisation or wealthy philanthropist. The variety of these systems testifies both to the ingenuity of their inventors and to the fact that enabling the blind to read was a legitimate, even urgent project in Victorian England.   

I would recommend the 'Touching the Book' exhibition to anyone interested in education, science, religion, visual culture or blindness in the Victorian era. It offers a fascinating glimpse of the race to develop the most useful tactile reading system and shows that Louis Braille is not the only one who deserves a place in history.

This guest post for the exhibition's blog explains some of the differences which I have noticed between British and French embossed books.

Smart Glasses: Science Fiction becomes Fact

The 'bionic glasses'

Much as I love my white cane, it does not always keep me safe. It helps me avoid pavement-level obstacles like bollards and kerbs but it is not so good at detecting overhanging branches, open windows or head-level signs. In fact I always seem to have a bruise or a bump somewhere on the upper half of my body from an annoying or painful collision with an unexpected object of some kind.

Last week I took part in some fascinating research which might well put an end to these injuries. Dr Stephen Hicks and his team at the University of Oxford Department of Clincial Neuroscience are developing some 'smart glasses' which use a tiny camera and an LED display to create a live, real-time image of the size, shape and position of solid objects. This would mean that sign-posts, wheelie bins and bus shelters would become completely detectable, even in absolute darkness. (I forgot to ask Stephen whether the glasses would also detect the partially blind person's least favourite objects: mirrors, transparent walls, display cabinets and glass doors).

I spent two hours with Stephen and his team testing out the glasses. When I put them on I felt like a character in a science fiction novel. Like Jean in Maurice Renard's novella 'The Phony Man' I was suddenly seeing the world in a completely different way. Objects which would have been impossible for me to see shone before my eyes in shades of pink and white. I found the glasses incredibly easy to use and within minutes I was happily navigating my way round a series of obstacles. I would find these glasses especially useful at night, in glaring sunlight or in dappled shade. They would not only stop me from walking into things, they would also help me keep a watchful eye on my children who are often the first things to disappear when light conditions affect my vision.

Stephen and his team are still testing the glasses and are keen to hear from anyone who might find them useful. I'm hopoing to go back in a few months to have another go.

History of Blindness Conference: Updates and Impact

The International Conference on the History of Blindness and the Blind which took place in Paris in June 2013 made a huge impact on me both professionally and personally. I learnt an immense amount about the history of the blind in various countries and at various times. I met a wonderful selection of interesting, intelligent and accomplished individuals and have already continued a number of conversations started there.

Below I list (in roughly chronological order) blog posts, webpages and recordings related to or inspired by the conference.

 - All the conference presentations are now available, both in English and in French, on the Singer-Polignac Foundation website.

 - My Blind Spot posts 'Guide Dogs for the Blind' and 'Where has (all the) Braille gone?' were directly inspired by the conference.

 - Author Mike Mellor wrote about his role in the conference for the National Braille Press Blog

 - Selina Mills' feature on the conference was broadcast on BBC Radio 4.

 - Heather Tilley's 'Touching the Book' exhibition, which she discussed at the conference, has now opened in London. After I visited the exhibition I wrote a piece for the exhibition blog comparing the British and French approaches to the embossed book.

 - La Ligue Braille have conference reports on their website in French and in Flemish.

 - Selina Mills reports on the growing interest in the history of blindness in the September issue of History Today (p. 7).

 - Conference delegate Dr Brian Miller discusses the conference in Accessible World's Special Program Series (download and listen here).

Where has (all the) Braille gone?

The Institut National des Jeunes Aveugles (INJA) in Paris was the first recorded school for the blind and it is still operating today. The Institut, which was founded by Valentin Hauy in 1784, moved to its current location on Blvd des Invalides in 1843. Louis Braille was a pupil, and then a teacher, at the Institut and developed his famous reading and writing system there between 1821 and 1825.

Given the crucial role played by the Institut in blind history, it seemed fitting that the opening evening of the History of Blindness and the Blind Conference would be held there. After spending the afternoon learning about the tactile inventions of Hauy, Braille and Foucaud at the neighbouring Musee Valentin Hauy (rue Duroc) it was a real pleasure to be shown around this venerable institution. I have walked past the Institut many times en route to the Valentin Hauy archive but this was the first time I had found my way inside.

As I admired the original architecture, peeked through the door of the classroom where Braille taught, and flicked through books in the library, I wondered how much has changed at INJA since the British aristocrat Sir Francis Head described the School in 1851. In his charming collections of sketches of Parisian places, A Faggot of French Sticks (available to read on googlebooks) Head describes his visit to the Institut in absorbing detail. He is particularly taken with the Braille writing and reading system which the boys are proud to demonstrate and he is very interested in the music lessons which he overhears. Even though his unseen observations of the blind girls at work has something voyeuristic about it, I like his description because it is refreshingly matter-of-fact. Unlike many nineteenth-century writers I have come across, he does not linger over the pitiful afflictions of the pupils or the tragedy of their condition. Instead he recounts how they get around the school unguided with an admirable absence of condescension or astonishment.

Head's comments are memorable because they reveal an approach to the blind which is more enlightened than many present day attitudes. It would never occur to him to ask 'are you coping?' for example. Part of this positive attitude may come from the fact that Head had recently been diagnosed with an eye condition: 'blephamphthalie' for which he was receiving treatment in Paris. But perhaps part of it also comes from the happy and healthy atmosphere of the Institut itself.

During my visit to INJA I was struck most of all by the absence of Braille. In our local mainstream secondary school which my (sighted) children will probably attend when they are older, there are Braille labels outside all the classrooms. But I found no such helpful signage in INJA's buildings. I came across no Braille books in the library and the only tactile objects in the classrooms were maps and globes. I was expecting INJA to be a haven for Braille users, a place where Braille proliferates, but instead it was, for all its blind history, an oddly Braille-free zone. The teachers were vague about its absence. They cited lack of funding and the fact that after a few weeks at the school students find their way around just fine. It also seems that advances in computer technologies mean that children are less willing to learn Braille because they no longer rely on it to read and write.

But that is hardly the point. Braille is still the universal language of the blind. If we want to see Braille used in the sighted world as a matter of course in public places like restaurants, museums and hotels, then surely the first School for the Blind should lead by example. Surely an Institut devoted to the education of the blind should have a political investment in the proliferation of Braille?. As I felt for the Brailled number 7 button in my dingy hotel lift, I wondered what Head would have said if he could have returned to INJA today.

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'.

Guide Dogs for the Blind

This signed photograph showing Blue Peter presenters in 1985 was one of the exhibits in the 'Who is Blind' exhibition organised by the College of Optometrists

One of the most interesting papers I heard at the recent History of Blindness conference in Paris, was Dr Monika Baar's fascinating and thought-provoking presentation: 'Guide Dogs for the Blind: A Transnational History'.

Anyone who grew up in 1980s Britain will remember the Blue Peter Guide Dogs for the Blind campaigns. Blue Peter was a popular children's television programme which encouraged its young viewers to collect silver foil and milk bottle tops to raise money for Guide Dogs for the Blind and the programme often featured reports on the work of guide dogs and their trainers.

Baar's presentation made me wonder about the unintended consequences of Blue Peter's work with Guide Dogs for the Blind. There is no doubt that guide dogs have changed the lives of thousands of blind and partially sighted people. Indeed I met several blind people in Paris whose mobility and Independence have improved thanks to their partnership with their dog. But the image of blindness conveyed by Guide Dogs for the Blind is far from positive. And this is in danger of having an ironically detrimental effect on the lives of the very people the association is hoping to help. As the sentimental music and condescending tone of this promotional video suggest, blindness is presented here as a pitiful, even tragic state which leads to depression, isolation and misery. Sighted children (and adults) who are exposed to such material might be forgiven for thinking of the blind as a sub-group of needy and pitiful individuals. But none of the dogless blind I met in Paris were anything like these stereotypical images. They were classic conference delegates: clever, funny, disorganised, sociable, irreverent and always up for a drink. Guide dogs certainly have their uses, but they also have their limitations. One blind delegate, an experienced and enthusiastic international traveller from the States, explained to me that he thought having a dog would limit his Independence because 'it would be like travelling with a clingy three-year-old child'.

I can understand why Guide Dogs for the Blind are the most successful UK Disability charity. Their Labradors are unfailingly photogenic and it feels both easy and good to give money to such an aesthetically pleasing cause. And on one level I don't blame them for using whatever material they can to get money for their cause. But if their mission really is about improving the lives of the blind and partially sighted, perhaps they need to think again about the way they represent blindness. But in the UK, generations of children have grown up thinking of blindness as a tragic condition which only a beautiful dog can remedy.

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.'

Blindness in Fiction 5: blueeyedboy

I have always loved Joanne Harris's fiction. She is best known for her Vianne Rocher trilogy (Chocolat, The Lollipop Shoes, Peaches for Monsieur le Cure) which hides its dark centre beneath a sugary coating. blueeyedboy, on the other hand, is a thoroughly bleak novel of deceit, danger and death. It is confusing and beguiling in equal measure and even after two readings I am not sure I know exactly who is who and what precisely is what in its world of internet posts where no-one knows what is real and what is fiction.

It is hard to write about this astonishing novel without giving aspects of its complicated plot away, but I can say that it is a novel narrated by two people, both of whom take on more than one persona. At some points, one of the narrators describes the (perhaps imaginary) thoughts of a blind girl or woman. This is one of the most convincing depictions of what it is like to be blind I have come across. It is convincing not through discussions of darkness, tragedy and obstacles to be overcome, but because it describes actions, thoughts and feelings with no mention of vision whatsoever. The descriptions are, instead, full of lavish evocations of sounds, smells, tastes and touches. It is as if the sense of sight has been completely erased from this particular consciousness. But this is done, at first, without alerting the reader to this character's blindness. So it is only much later on in the narrative that it occurs to us that these descriptions have been written by someone who does not see. And the most exciting thing about this is that it is not until we begin to suspect the character's blindness that we notice the absence of the visual. Before this point, there is no sense that anything is missing from this character's interactions with the world. And this is precisely how the blind experience the world: not as a place of absence or lack from which the most important sense has been removed, but as an all encompassing sound-, smell-, touch- and taste-scape.

Harris can pull off this trick of writing blindness without lack because her writing has always been extraordinarily sensual. Sighted characters throughout her books revel in the tastes and smells which surround them in a way which calls into question the traditional hierarchy of the senses. In her best-known book Chocolat, this is epitomised in the magical smells, tastes and textures creates by Vianne in her shop in the south of France. In blueeyedboy Harris gives us a blind character whose interactions with the world are rooted in her non-visual senses. But she also shows us sighted characters who relate to all their senses in extremely powerful ways.

I love this book because as well as providing a gratifyingly positive representation of blindness, it also challenges the perceived primacy of sight by suggesting that vision is not as all-powerful as people tend to believe. Through the world of the internet we learn that nothing is as it seems and that the words which we glimpse on a computer screen might trick us in a way that smell, taste and sound do not. Indeed of all the characters in the book, it is perhaps the blind girl who is most perceptive about the world around her and the people in it.

International Conference: The History of Blindness and the Blind

UPDATE: Read my account of the conference's impact here.

I have only recently realised that blindness is a subject worthy of academic research. My previous academic work focuses on the body first in the novels of Emile Zola, and then in the nineteenth-century novel more widely, but I have only 'come out' as a disabled scholar - and a scholar of disability -  in the last 18 months.

My work on blindness is both personal and professional. The wonderful writings of Cathy Kudlick and Georgina Kleege have inspired me to see my own blindness in a positive way, whilst the crucially important history of blindness in France, Vivre Sans Voir (The Blind in French Society) by the majestic Zina Weygand demonstrates how crucial it is that the blind are able to both write and read a history of our own. Thanks to Cathy, Georgina and Zina I can feel an urgency behind my own research into how blindness and the blind are represented in French culture which comes from both a need to change the way blindness is perceived and a desire to finally speak a history which has been neglected for far too long.

I hope that the International Colloquium on the History of Blindness and the Blind which takes place in Paris next month will change both public and academic  perceptions of blindness. As a member of the organising committee I have been able to put my new-found belief in the importance of blindness into practice by helping to organise a major historical and cultural event which pushes blindness to the forefront of the academic agenda. As a speaker at the conference I will have the chance to meet and talk with leading historians of blindness from around the world. Now all I have to do is write my paper.

Attendance at the conference, which takes place in Paris from 27-29 June is free but advance registration is essential by emailing: histoire.cecite@singer-polignac.org

On Giving Directions to the Blind

Last week I visited the RNIB to use their research library. I had found a couple of promising nineteenth-century texts through their online catalogue and as I had to be in London on Friday anyway, I made an appointment and requested the materials.

As this was my first visit to Judd Street I was looking forward to seeing how visiting an overtly blind-friendly environment differed from my usual experiences. I find going to unfamiliar places challenging and disorienting and usually need some help to find my way around at first. But surely the RNIB would be different?

I planned my route from King's Cross using the excellent map I found on the RNIB website. As well as giving street names in large print, it has useful landmarks like shops, traffic lights and post boxes marked on it too. Even though I'd never been there before I easily found my way to the well-signed entrance.

But once I was inside things were less clear. At a desk which I took to be Reception I gave my name and asked directions to the research library. The response I received was not quite what I was expecting: 'Just through there' said the receptionist, pointing vaguely. As I don't find visual gestures very enlightening, I asked for a bit more detail: 'It's just down there' wasn't quite the response I was hoping for.

Nonplussed by this less-than-helpful welcome, I headed into what I now know is the shop and asked the next person I came across for directions. He didn't appear to know that the RNIB had a research library, but his colleague helpfully told me to walk round to my left until I came to a low desk. Finally a set of directions that I could relate to! I collected my documents and spent a happy couple of hours reading about Victorian visitors to the Institute for the Blind in Paris.

But my mind kept wandering back to my disappointing welcome. How was it that the UK's leading charity for blind people was so resolutely reliant on the visual? I had been expecting tactile floor guides, Braille notices and an abundance of aural clues. Instead I was given a welcome that compared pretty unfavourably with the help I get in most 'sighted' environments.

At first I was shocked and upset that the RNIB of all people weren't doing more to challenge the hierarchy of the senses. But then I had a thought. One of the main aims of the RNIB is to help those with sight loss come to terms with their condition. They believe in 'rehabilitation' 'adaptation' and 'quality of life'. So perhaps their unhelpful welcome was not a result of ignorance or lack of imagination. Maybe it was a rather abrupt way of reminding me that it is my responsibility to adjust to the resolutely visual world in which I find myself.

In Praise of Public Transport

Waiting for the bus in Nimes, April 2013

Most people assume that not being able to drive is the most negative thing about being registered blind. But I have never seen it that way. At times not being able to hop in the car at will can be mildly inconvenient but this is an occasional annoyance rather than a tragedy.

The same people who feel sorry for me because I will never drive, tend to overlook the main advantage of not driving: public transport. I love public transport. True, it is generally slower than going from A to B by car but once you've accepted that speed is not necessarily as important as Jeremy Clarkson would have us believe, and got used to a little bit of forward planning, public transport is a lot of fun.

This year I managed to convince my (driver) husband to put this theory to the test by travelling round France exclusively on buses, trains (both under and overground) and trams. French public transport is cheap, plentiful and well-organised and we managed to do everything we wanted (including a trip to the remote Pont du Gard) without a car. Public transport is a great way of feeling part of the country you are visiting. Conversations spring up easily with fellow passengers (especially when you have two chatterbox children with you) and it gives much more interesting insights into the minutiae of everyday life than a cocoon-like car. Studying train timetables and eavesdropping are two of my favourite pastimes so I am particularly well-suited to the combination of co-ordination and communality which makes public transport such a pleasure. And listening to people's conversations (especially in France) always makes me feel more at home.

Above the Pont du Gard, April 2013

Recent eco-initiatives have made public transport more popular but it is still vastly underrated. For most people is it is a second-choice or worst-case scenario. But my blindness allows me to experience the fun, adventure and camaraderie of communal travel which car drivers unwittingly miss out on.

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.

Confessions of a Blind Mother

Last week I did something I'd never dared do before. I took my children to London on my own. This might not seem like a big deal. Other mothers I know are always taking their kids out on days out, to parties, on shopping trips or to the swimming pool. But I have always found being alone with my children in public stressful and difficult. I do not have difficult children. Zac (age 6) is funny and affectionate. He likes to stay close in public and more often than not chooses to hold my hand. Raffy (age 8) is exuberant and full of energy. He is never still and always runs ahead, darting in and out of passers-by and jumping on and off walls. My problem is that I find it impossible to watch them both all the time. Raffy doesn't have to run very far before he is out of my sight and even Zac can vanish from view by taking a few steps backwards or to one side. They always look a little blurry and I can't distinguish them from other children of the same size and shape when they are more than a few metres from me.

As soon as they were old enough to walk I became terrified of losing them. Even the walk to school was frightening as they would run ahead and I'd worry that me not being able to see them meant that something dreadful had already happened to them.
Now that I have started thinking about my blindness in a more positive and proactive way, I have realised that I was approaching motherhood from a sighted perspective, obsessing about keeping my children in sight because that was what the sighted world expected parents to do. After the Madeleine McCann case, which happened when Raffy was 2, I became even more worried that something might happen to my children if I couldn't see them. (Of course I was also particularly interested in this case because Madeleine has coloboma like me.) I used to worry that I was a bad mother because I couldn't always see what my children were doing. But now I know that I am just a different kind of mother.

I have developed other ways of keeping track of them. When we are in crowded or dimly lit areas I get them to help me hold my cane and let them help me swipe it from side to side. We have even created a game where they have to try jumping over the end of the cane without touching it. This keeps them close whilst giving them some freedom. It also makes blindness fun. If I lose sight of Raffy I simply call his name. He has got used to answering and I use this sound either as reassurance or as a way of finding him again.  As he becomes more independent I let him go off on his own (within reason) as long as he tells me where he is going and knows where to find me again. We have both got very good at fixing meeting places and returning to them. This has helped us build a trusting relationship.  Zac has got used to describing things to me and sometimes plays at being my (talking) guide dog. He points out steps, kerbs and stray dustbins and he will always tell me where Raffy is when I ask him. Both boys are great at alerting me to approaching friends and acquaintances. My face blindness means I cannot even recognise good friends in unexpected contexts. But the boys can and they'll say, 'Look, Mum, here's Carolin' just as she stops to say hello.

I have always been open about my blindness with my children and this has helped me be more honest with myself. I wanted them to understand what I can and cannot see, why I do not drive and why it is important that they answer me when I call to them. But mostly I wanted to make sure that my blindness was not a taboo topic of conversation. They must not be ashamed of my blindness or think of it in a negative way. Sure, it is mildly annoying that sometimes we have to undertake laborious trips on public transport which would have been quick and easy in the car, but it is not a tragedy. I think I have done a pretty good job of convincing them that my blindness is not a bad thing. There is no denying that it makes me different from most mums, but it has also shown them that sight is not the only way of navigating the world.

(And as for our trip to London: we had a great time. No one ran off or got lost and we all loved the Churchill War Rooms. I especially liked the audio guide whilst the boys enjoyed the huge interactive displays.)

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.