Blindness at the Donmar Warehouse

Image description: a photo of my standing to the right of a poster for the Donmar Warehouse's production of BLINDNESS. I am smiling broadly. Dark glasses cover my eyes and the top of my white cane stands next to me. On the poster, the cast and creatives are listed. My name appears in the list alongside the description 'Production Consultant'.

When I heard from my friends at VocalEyes that the Donmar Warehouse was planning a production of Saramago's problematic novel Blindness my heart sank. The all-too-familiar alarm bells started ringing in my mind. 'Will this be yet another sighted peoples' depiction of 'blindness as tragedy'? I wondered. 'How dare sighted people tell us what our blindness feels like!' I fumed. I worried about whether this supposedly 'non-visual' installation would turn into a wrong-headed simulation of blindness which might have the dangerous effect of further stigmatizing blind and partially blind people.

Luckily, the Donmar team were very receptive to my concerns. After a Zoom meeting with them, I was appointed 'Production Consultant' for the installation. My job? To help them understand why many blind and partially blind people find Saramago's portrayal of blindness so offensive, and to work with them to find ways of using the production to think about blindness in different - perhaps more positive - ways.

Saramago's novel depicts a world where sudden, contagious blindness leads to the disintegration of society. As people go blind, they lose their dignity: they become violent, sexually aggressive and ruthless and the world descends into chaos. Eventually, one group of blind people are saved by the only sighted person left. She finds them food, gives them shelter and makes them clean again. At first I wasn't sure there was anything the Donmar would be able to do to redeem this unremittingly tragic depiction of blindness. The production is an adaptation of the novel, so it needs to use the novel's words and actions. But then I realized that that potential of the piece lies not in its content, but in the ways this content is presented.

Lockdown has made traditional theatre impossible because live actor performances are not allowed. So the Donmar created a socially-distanced sound installation with binaural audio recorded in advance. Aside from some powerful lighting effects (which are audio-described at every performance), the production is entirely reliant on our sense of hearing. As such, it is compelling evidence that we do not need our sense of sight to enjoy the theatre. By asking non-blind people to temporarily relinquish their reliance on visual sources of information and focus instead on their often-neglected listening skills, the production performs a re-calibration of the 'hierarchy of the senses' where vision is dislodged from its traditional place at the top. The most powerful moment in the show is when the audience is plunged into absolute darkness. In this instant we become completely reliant on the beguiling voice of Juliet Stevenson's narrator, and we strain our ears to capture every sound of her presence. We are suddenly alone, with the intimate whispers of the character as our only guide. I did not find this plunge into the dark frightening, although I suspect some non-blind people did. I found it liberating. Finally I could devote my whole being to listening without worrying that I was missing some of the visual information which is so highly prized by my non-blind peers. I could have sat in the dark all day listening to the mesmerizing drama unfolding around me.

But light did return, and the audience gradually became visible once more. I expect most people were relieved at this return of daylight. I felt oddly disappointed as I was forced back into the sighted world I have such a problematic relationship with.

It would be easy - but perhaps a little lazy - to criticize this production for reiterating Saramago's negative depictions of blindness. But this would be to miss the point of the Donmar's use of immersive binaural technology. This adaptation is the perfect place to challenge misconceptions of blindness because it gives us a powerful aesthetic experience without any need of sight. Unlike the negative depictions of blindness in Saramago’s novel, this installation delivers important messages about the value of the non-visual senses, the creative and aesthetic benefits of blindness and the ways that the concept of ‘blindness gain’ might encourage non-blind people to reconsider their own misconceptions of blindness.

For more on the depiction of blindness in the installation, as well as my thoughts on blindness gain, reading blind and trying to 'pass' as sighted, listen to the podcast recorded by me and writer Simon Stephens to accompany the production.

Book Review: Patient H69

This image shows the front cover of Vanessa Potter's book. The title - Patient H69  - is presented in the style of the familiar Snellen eye chart. The subtitle - The Story of my Second Sight  - and the author's name sit beneath the eye-chart letters.

Vanessa Potter, otherwise known as Patient H69, lost her sight suddenly over three bewildering days. In this compelling memoir, - part patient diary, part journey into and out of blindness, part popular science book - she describes how her sudden blindness made her feel, what changed as she slowly regained her sight, and how her new way of seeing has changed her outlook on the world and herself.

When Vanessa and her publisher first asked me to read and review her manuscript I was worried that I would find yet another blindness-as-tragedy, triumph-over-adversity story. But Vanessa's refusal to accept the role of passive patient-victim, the pleasure she takes in the new experiences of her 'second sight' and the humorous and articulate way she talks about her own and others' reactions to her new way of seeing, saved this book from becoming yet another self-pitying account of blindness as almost death. 

There is much of interest in Vanessa's tale. Some readers will love the human-interest aspect of Vanessa's story as she describes how her illness impacts on her life as wife, mother, daughter and friend. Some readers will be fascinated by the psychological and neurological explanations which underpin Vanessa's understanding of her condition. I am most interested in what Vanessa's story of sight-loss tells us about how visually-dependent and appearance-obsessed modern society has become. 

It is fascinating to see how Vanessa's attitude to blindness changes. At first, she sees blindness as unimaginably awful, so unspeakable that she bans her family from even using the 'b' word. Although the terror she feels at the possibility of going blind is entirely understandable given how visually dependent sighted people tend to be, the passion with which she articulates her fight against her failing sight nonetheless still feels like an insult to blind people. When she refers to herself as 'staring with that blank, off-centre gaze that blind people have', Vanessa not only lumps all blind people into a homogeneous, alien and unattractive group, she also refuses to relinquish her sighted status, by talking about 'them' as opposed to her. Perhaps it is this inability to see herself as blind that prevents Vanessa from accessing services for blind people. As I read the descriptions of her struggle to weigh herself, her abandonment of reading, and her attempts to write with a giant felt-tip pen I was horrified that no-one offered to help her get hold of some talking scales, an audio book subscription or the kind of free text-to-speech software I discuss here.

After several days of total blindness, Vanessa becomes more appreciative of its nuances and wonders. At the very moment when her sight begins to return, albeit in odd, unpredictable and indescribable ways, Vanessa begins to appreciate the complexity of seeing and not seeing. Her struggle to put her new way of seeing into words is the book's most interesting part. For during this struggle she encounters society's misguided obsession with perfect sight and its consequent need to categorize people as either 'blind' or 'sighted'. Vanessa can read nothing on the Snellen eye chart. She is therefore officially blind. But she can see patterns, shapes, even faces. Yet the medical establishment has no way of measuring this kind of sight. By showing how seeing actually happens on a spectrum, and how it is as much about the brain as it is about the eyes, Vanessa reminds us that everyone sees things differently. No-one has perfect sight so everyone is partially blind.

Vanessa quickly learns to supplement her sight with her other senses and the enjoyment she takes in this new way of relating to the world is a precious reminder that sight is not as necessary as we often think. The multi-sensory nature of Vanessa's prose reflects her other senses' expansion. For example, her description of the sound of the nurses' shoes as an 'invisible symphony' is a clever and synaesthetic way of combining (non)sight with sound to emphasize the power of the latter over the former.

But despite this increasingly multi-sensory approach, which is beautifully and evocatively reflected in her prose, Vanessa refuses to give up her fight for sight. Throughout the book she insists again and again on her need to see. This stubborn reliance on sight is the book's most important, yet most unsettling message: by revealing just how embedded sight is in most people's sense of their own identity, Vanessa unwittingly reveals the complex reasons why most people are terrified of losing their sight. Anyone who is frustrated by society's refusal to acknowledge the validity of their particular way of seeing will find much to relate to in this enthralling account.

Patient H69 is available in print and e-book here. Enter PATIENT at the checkout to receive at 30% discount. It is available from amazon here as a kindle or audio book. At my behest, Bloomsbury have provided descriptions of all the images found in the book here.

My cataract operation

As Kate Tunstall shows in the Prologue to her important essay 'Blindness and Enlightenment' (2011), the cataract operation, or, more precisely, its triumphant post-operative illumination, is a familiar trope in the narrative of blindness. Three hundred years ago it was the focus of sustained philosophical interest; today it is used by international charities to construct sentimental stories which encourage western generosity. The operation to remove cataracts is a simple one; it takes around 20 minutes and is usually considered low risk, almost always resulting in improved vision. So why do I have such distinctly mixed feelings about this Friday's operation to remove a cataract from my right eye?

Cataracts are the most common cause of vision problems in people over forty. Their removal is a moment of joy and revelation as the world's blurriness is corrected and colours become vibrant once again. 'It is like being a child in a sweet shop' someone once told me. But my case is a little different. Even if my cataract operations go smoothly (something which is far from certain because of the shape and size of my eyes), I will still be registered blind. My underlying condition - retinal coloboma - won't change. What will happen is that I stop seeing the world as I do now. Instead I might see things more clearly, more colourfully, or I might no longer see anything at all.

For most people, the decision to have a cataract operation is a straightforward one driven by the understandable (although ocularnormative) desire to see as well as possible. But my decision to finally allow surgeons to remove the dense disks which cover both my eyes is more complicated. My ophthalmologist first noticed my cataracts 20 years ago and they have been growing, and thickening, ever since. They now prevent me from distinguishing colours and make reading difficult, even with my special glasses and my beloved kindle. I have always used sight where I can but increasingly I am finding that the flawed sight I have is more of a hindrance than a help. Sometimes I think that it would be easier to have no sight at all than to have this unpredictable, fallible sight which I can no longer rely on. And I have noticed that most people feel more comfortable relating to a totally blind person than to one who seems to be able to see some things but not others. Since I started properly exploring my blindness four years ago, I have learnt braille, become a more confident white cane user and discovered the pleasure and potential of the audio book. If the operations don't work, I am confident that I will be happy to live, love and work as a totally blind person.

I know that most of my friends and family are hoping that these forthcoming operations will lead to a marked improvement in my sight. I know that they are hoping for a cure of sorts and I know that they will be upset if I end up blinder than ever. I know that despite my best efforts, most people still think that sight is better than no sight, and that partial blindness is better than total blindness. And on one level they are right. We live in an ocularcentric world in which life is certainly less complicated with sight than without it. Of course I am hoping for some improvement in what I see. Believing that blindness is not a tragedy does not stop me from wanting to be able to read as I could five years ago. The fact that I have had some sight makes it impossible for me not to remember that I used to be able to see much better than I can now. But if the operations lead to total blindness - which is a distinct possibility - I don't think I'll be as upset as those around me.

Any operation performed under general anaesthetic is a little bit scary so whatever the outcome, I am looking forward to several days of enforced bed-rest, accompanied by Radio Four, my new audio book reading machine, regular cups of tea and copious amounts of flowers and chocolates.

The Day My Glasses Broke

Last week I was pleased to be invited to speak on 'Blindness in French Fiction' at an international colloquium on 'Representations and Discourses of Disability' organised by two PhD students from the Sorbonne, Céline Roussel and Soline Vennetier.

This colloquium, the first of its kind in France, brought together around sixty researchers working on the emerging field of 'études sur le handicap' (French Disability Studies). As well as catching up with a number of old friends, I was particularly pleased to meet a range of young French researchers, both disabled and non-disabled, whose work suggests innovative and thought-provoking ways of combining the highly philosophical nature of French academic discourse with an Anglo-American interest in embodiment to take Disability Studies in new and fruitful directions. 

As I was getting ready for bed after a long day of papers and discussions, something happened which in retrospect seems to capture this tension between French philosophy and Anglo-American embodiment - or between French theory and Anglo-American practice - perfectly: my glasses broke. My first reaction was one of panic. Here I was, in a foreign country, far from home, without a spare pair of glasses or the means to acquire one, suddenly deprived of my ability to read, shop and navigate. How would I manage during my last two days in Paris? How would I find my way back to the gare du Nord? More importantly, how would I buy the cheese and chocolate I absolutely had to take back to England with me?

Thinking back now, I am ashamed and embarrassed by this ableist reaction to my broken glasses. In my paper, which I had delivered that very morning, I argue that Lucien Descaves's 1894 novel Les Emmurés and Romain Villet's 2014 novel Look are important depictions of blindness because they invite us to celebrate blindness for its own sake. They do not lament their protagonists' lack of vision. For them, blindness is not a tragedy, it is just a different, albeit slightly inconvenient, way of being in the world. 

Since I 'came out' as partially blind four years ago, I have often said that I do not see my way of not-seeing as a problem. And yet as soon as I found myself with even less vision than usual, I started worrying about how I would cope. I even found myself evoking precisely the kind of ableist language which I criticise health professionals for using.

In fact, it turns out that this sudden almost-blindness was indeed far from tragic. I actually quite enjoyed living without any glasses for a day or two. How nice to walk from outside to inside without everything getting all steamed up. And how restful not to be able to check e-mails or facebook every five minutes. And it turns out that I am actually pretty good at being blind. I found myself confidently using my white cane to get around the uneven streets of Paris and I became much more ready to ask for help in shops, at busy junctions and on the train. I used to pride myself on being able to get across Paris un-assisted. Now I realise that knowing when to ask for help is actually an art in itself. And my new talking book reader (a blog post about which is coming soon) proved particularly valuable on my long journey back from Paris to Oxford.

I picked up my repaired glasses this morning and there is no denying that I am delighted to have them back. But being obliged to function without them was a good thing. Not only did it make me think more closely about my own internalised ableism, it also reaffirmed what I already knew: blindness does not stop us from doing things; it just makes us do them differently.

Blind Creations: Pride, Nostalgia and the 'Economy of Trust'

Since the Blind Creations conference ended on Tuesday, I have been trying to decide how to write about it here. The event, which I organised with Vanessa Warne, was three days of fascinating insights and new encounters from which I emerged at once energised and exhausted; delighted yet already nostalgic and a little sad. For most of the time, I was so busy running the conference, that I didn't have time to attend the sessions. I have yet to hear the fascinating panels on audio description, haptic art and tactile books, although I did catch most of the wonderful plenaries. Happily, we will soon have an audio archive of the conference on the site, so I will be able to discover everything I missed.

Until then, my imperfect knowledge of the conference means that in this post I want to discuss other things. Whilst I am not yet ready to comment on the academic side of the proceedings, I can focus on the incredible community which developed during the event. What struck me as I flitted from person to person - welcoming, explaining and answering questions - was the amazing warmth, generosity and open-mindedness of the attendees.

I was particularly struck by the exchanges between non-blind people - or SVDPs (Severely Visually Dependant People), as Georgina Kleege described them in her plenary - and blind people, which proliferated during the event. Almost half of the 116 delegates were blind and negotiating unfamiliar spaces was logistically complicated. So we quickly established what Ryan Knighton referred to as 'an economy of trust' where blind people were happy to be guided, described to and generally supported by non-blind people whom they had never met. The constant elbow proffering and taking which went on created a thrill of public intimacy which I have never encountered before. And how lovely it was not to be the only blind person in the room. What a relief to know, for once, that I was not the unsolicited focus of an (often pitying) sighted gaze..

An outsider observing the conference might have thought that the blind people being led about were dependant on their sighted guides. This may have been the case sometimes, especially on the first day when everything was new to everyone, but as the conference went on, it became clear that the sighted attendees were just as, if not more, reliant on the blind conference goers.

The non-blind delegates did not need to be physically guided, but they did need help of a different kind to negotiate blind culture. By engaging with blindness both as the subject of the conference and as the way of life for many attending, non-blind people were constantly forced to challenge their own misconceptions of blindness and rethink their personal sensory hierarchies where sight almost always dominates. Time and again I overheard conversations in which non-blind people were enthusiastically extolling the virtues of touch, hearing and taste. For a few short days, we created an alternative world where vision became the least important of the senses.

It was not only the conference delegates who were changed and challenged by their creative encounters with their own and others' blindnesses. Across Royal Holloway, staff and students were confronted with more blind people than they had probably ever seen. Everyone who had anything to do with the conference or its delegates very quickly learnt how to give audio rather than visual clues, how to describe in a non-visual way, how to guide with respect and humour. I like to think that  'Blind Creations' touched many people who will probably never think of blindness in the same way again.

Most of all, this conference made me proud. I am immensely proud that Vanessa and I managed to create such a unique event and I am proud that we gathered such an extraordinary group of people around us. But more than that, I am proud to be part of the vibrant, intellectually demanding, passionate, hilarious and deeply generous creatively blind community. I have never felt so glad to be blind.

Can 'the dress' change our attitude to blindness?

The image shows a striped dress which may be gold and white or may be blue and black

Since the now infamous photo of 'that dress' was posted on the internet last week, millions of people have been arguing about whether the dress in question is in fact white and gold or blue and black. The subject even came up in my 'Blindness and Vision in French Culture' class this morning as we were discussing the role of colour in French artist Sophie Calle's series Les Aveugles (1986).

Once my students had all shared their views on the gold/white-blue/black controversy, we began to think more critically about why this dress has made such an impression on so many people in such a short space of time. And we wondered how we might use it to encourage people to reconsider their preconceptions about blindness and vision.

Most sighted people prize their sense of sight above all their other senses. They place it at the top of an imaginary 'hierarchy of the senses' and consequently cannot imagine life without it. This is why blindness is so often seen as a tragedy, a fate worse than death. This misguided reliance on the power of sight is encouraged by the sight-obsessed world in which we live. The images which bombard us send us two separate, but related messages: firstly, they constantly reassure us that most of our information comes to us through our eyes; and secondly, they consequently teach us that how we look matters because this is how people make judgements about us.

The arguments over the dress's colour scheme have caught our imagination precisely because they shake our trust in sight. They invite us to question our preconceptions about the power of the visual by demonstrating that two people can see the same picture in different ways. They demonstrate that sight is not an objective, perfect way of seeing the world: it is fallible, unreliable, and subject to change.

'The controversy over 'the dress' is important because it has the potential to undermine sight's privileged position in society. And one result of this challenge to what we think we know about sight, might be a renewed interest in what exactly we can (and cannot) learn about the world through all our senses. Aren't hearing, touch and smell more reliable senses in certain situations? Perhaps, therefore, blindness is not in fact the tragic, life-limiting affliction so often evoked in books, films and newspapers. No matter what our reaction to the dress tells us about colour perception, photo exposure, light waves - not to mention temperament, political views and even general outlook on life, -  it certainly invites us to rethink our fierce reliance on, and constant privileging of, our far from perfect sense of sight.

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.

Blind Spot at Two

Happy 2nd Birthday Blind Spot Blog

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

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

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

Blindness and/on the Radio

I have already written here about my exciting visit to Salford's Media City to be interviewed by Jenni Murray for BBC Woman's Hour back in September. Yesterday I was lucky enough to be back on the programme, this time talking about women and blindness.

My experience was still wonderful, but it was very different from my first time. Instead of travelling to Salford, staying over in a nice hotel, meeting the other guests and being surrounded by the hustle and bustle of a busy radio studio, I did the interview alone in a small room at Radio Oxford. Once I was connected to Salford, I exchanged a few words with the studio manager to check for sound levels, and then I tried to sit back and relax whilst I was waiting for my turn. The studio very kindly played me radio 4 through my headphones as I waited but I nonetheless had a lot of time to worry about what was going to happen. Despite the soothing effect of my favourite radio station, which has always calmed me in stressful or lonely situations, I had a hard job controlling my nerves and I was pretty relieved when my turn finally came.

As the presenter, Sheila McClennon, introduced our segment and asked me my first question, I suddenly went from being passive listener to active participant. Although I had done this before, I still wasn't prepared for how dizzying it feels being responsible for providing the content of a programme you have been happily listening to only seconds earlier. As the adrenaline started flowing my nervousness was replaced by a mixture of excitement and pride.

It is doubly fitting to be interviewed about blindness on the radio and over the phone. Radio presenters are brilliantly attuned to the non-visual nature of their medium. They build audio description into everything they say without even thinking about it and are always very careful to use interviewees' names each time they address them. This is primarily so that the listeners always know whose voice they are hearing. But it also helps phone interviewees know which questions are being addressed to them. When I described my long-distance intervention to someone yesterday, she immediately wondered how hard it must have been for me to respond to questions without being able to see the faces and reactions of Sheila McClennon and fellow guest, Denise Leigh. I resisted pointing out the irony of her observation. What she actually meant was how difficult it would have been for a fully sighted person. In fact it is incredibly easy for me to respond to questions put to me over the phone because I spend my life talking to people without seeing their faces. Where a sighted person might have noticed a lack of eye contact, I really love being able to talk without worrying about trying to see, or pretending to see, others' reactions. I am an expert at getting all my clues from sound: maybe this is why being interviewed on the radio feels like second nature to me. I went on Woman's Hour to try and explain that blindness is not a tragedy, a lack or a descent into darkness. It is just a different way of being in the world. If some blind people resent their sightlessness it is because we live in an occulocentric world which privileges sight over all the other senses. But it doesn't have to be that way. Anyone involved with radio, as listener, presenter, producer or contributor, already knows that blindness is not something to be feared, resisted or even necessarily cured. Whether we realise it or not, radio is a constant celebration of the power of blindness, a constant reminder that sight is not necessary in order to have a complete and fulfilling sense of the world.

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.

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.

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 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.'

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.)