Best and Most Beautiful Things

This image is the cover of the DVD: it is a shot of Michelle's legs waiting at a pedestrian crossing in the dark. Her white cane is also shown. She is wearing bright pink ballet pumps and mismatched knee-high socks.

In 2013 I was contacted about a crowd sourcing project to fund a documentary about a legally blind student graduating from Perkins School for the Blind. I was pleased to make a donation and a few days ago I received my Kickstarter reward: a free download of Best and Most Beautiful Things. The film, which was released to much critical acclaim, aired on PBS yesterday and is now available to buy as an iTunes download or a DVD with Audio Description. 

Before I watched the film, I was worried that it would be yet another sentimental, 'triumph over tragedy' story about a blind girl overcoming adversity. But knowing that it won 'Best in Fest' at the 2016 International Disability Film Festival 'Superfest' reassured me that I was about to watch a creative and critical depiction of blindness.

'Best and Most Beautiful Things' is indeed a thought-provoking film about blindness. But rather than trying to teach its audience about life with blindness, the film simply shows Michelle going about her daily life. This is a hugely effective way of sharing Michelle's experience without depicting her as victim, object or other. We see her magnifying text on her computer, holding print close to her face and using her white cane. We also see her roller-skating, singing, shopping, getting dressed and skyping. Blindness is part of Michelle's normal. So as we watch the film it becomes part of ours. The film's cinematography helps us share Michelle's way of seeing. Extreme close-ups replicate Michelle's proximity with everything she sees whilst out-of-focus, decentred or jumpy shots echo the world beyond Michelle's field of vision. There are also moments which remind us of the disadvantages and advantages of blindness. I have often experienced Michelle's tearful frustration when fruitlessly searching for a lost object. But on the other hand, her karaoke singing is made more beautiful and more fluent because she is obliged to memorise the lyrics of every song she sings.

This still from the film shows Michelle colouring in a large home-made poster which says 'Unlearning Normal!' in rainbow letters.

In 'Best and Most Beautiful Things' Michelle urges us to 'unlearn normal'. The film shows Michelle's refusal to conform to any of the stereotypes her parents, teachers and acquaintances might have once associated with blindness. Her provocative re-appropriation of the myth of the infantile blind girl is particularly interesting. She challenges some people's tendency to overprotect or talk down to blind people, particularly blind women, by both her proud love of dolls and her discovery and celebration of submissive BDSM age-play. Michelle's sex-positive, non-binary stance is a crucial part of the film's challenge to normal. As the director Garrett Zevgetis puts it in a Q and A for PBS:

Our collective ideas about “normal” can be downright dangerous and thus must consistently be challenged. #HackNormal: The most dangerous and deep rooted normality might be hegemonic masculinity.

We all have a tendency to make assumptions about other people based on our own preconceptions. 'Best and Most Beautiful Things' urges us to rethink how we see others. It is a powerful, touching, yet resolutely unsentimental call for a more tolerant, imaginative and creative society where everyone is valued for who they are.

Watch it.

Shades of Blindness

I think it is fair to say that my cataract operations were successful. For the first time in three years I can read print, the world is so bright and colourful it feels like I am on the set of The Wizard of Oz, and all my friends and colleagues look about twenty years older. But whilst my sight is better than it was when I was an undergraduate student, I am still legally blind. I feel like I can see again but it turns out I still can't read the eye chart, see detail close up or at a distance or recognise people. Navigating in crowded or unfamiliar places is still tricky and stressful and I still need my reading glasses, my telescope and my white cane. And now I also need shades. I used to hate wearing sun glasses. By blocking out what little light made it into my eyes, they made me even blinder than ever. But now I can't go out without them. My new cataract-less eyes are amazingly sensitive to light. Even with my shades, I can see colours more brightly than I could before. But wearing shades has a drawback I hadn't expected. By hiding my eyes, the shades also hide my blindness. And because my eyes look different they work a little bit like my white cane - they tell people that because my eyes do not look the same as theirs, I might not see the same as them. So when I go out with my shades but without my white cane I look completely sighted. And this can cause problems. Last weekend I went to a music festival with my family. We had a lovely time camping, eating bacon sandwiches and drinking wine (not necessarily all at the same time). But when I went down to the front to watch a band (without my white cane), a rather irate lady accused me of pushing in. I honestly had not meant to push in front of her and was genuinely shocked at her anger. I was also upset because I realised that I do not in fact see as well as I thought. I still miss visual cues (and clues) and without my white cane this makes me look at best clumsy, and at worse rude. So even though my cane is heavy and cumbersome, and even though my new sight makes me wonder if I am really as blind as the medics' measurements suggest, I will still be using my cane and still proudly defining myself as 'partially blind'.

Skiing Blind

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

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

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

Properly-fitting boots are crucial for confident and controlled skiing 

because heels and toes are often used to control turns and improve balance.

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

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

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

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

Simon and I with our wonderful instructor/guide Jolanda: 

note our smart 'blind skier' bibs.

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

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

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

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

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

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

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

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

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

  

The LEGO Movie: Being Blind is Awesome!

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

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

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

Braille cell or LEGO brick?

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

Melody: how (not) to introduce children to blindness

Melody is a new BBC show for preschoolers which is designed 'to introduce children to a variety of classical music through stories and delightful, colourful animation'. The title character is partially blind and according to the BBC's Grown-ups Blog, the show uses techniques such as vivid colours. exaggerated gestures and slower-than-usual camera movements to appeal especially to visually impaired viewers. 

It is always wonderful (and still rare) to find positive disabled role models on television and the great thing about Melody is that her blindness is part of the show without ever being made into an issue or a problem. There is absolutely no sense of tragedy, no talk of triumph. Neither is her blindness down-played or ignored: neither Melody nor her mother are in denial about what she can or cannot see. No danger of her wanting to 'pass' as a sighted girl in later life. At the same time, Melody is a little girl like any other: she loves flowers, butterflies, the colour pink and her cuddly cat Fudge. Each time she listens to the day's music, she carries the viewer off into an imaginary world where she flies with birds, dances with butterflies and re-enacts fairy stories.

When I first watched the opening sequence I was delighted to see that the cartoon Melody is drawn with her white cane. As she happily dances through her imaginary landscape the cane is no longer a sign of stigma, but an enabling device which also happens to be a pretty cool accessory. There is a problematic moment in the opening sequence when the cane disappears as Melody's imaginary adventures progress. Surely, I wondered, this isn't an ableist suggestion that Melody is freer from her disability in her mind than she can ever be in real life? I needn't have worried. In the most recent episode, 'Flying High', Melody's cane is present both during her real-life trip to the park and in the subsequent imaginary adventure in the treetops. 

As we saw with 'Notes on Blindness', it is never easy to depict blindness in a visual medium. The show needs to be accessible to the blind and the partially blind whilst at the same time also appealing to sighted viewers so that it can become the mainstream hit it deserves to be. Imagine if Melody became a role-model for both blind and sighted children! Unlike the directors of 'Notes on Blindness', the makers of Melody do not try and depict the world from Melody's point of view. We are not shown what she actually sees. Instead we are shown how she relates to the world around her. And in some ways this is more powerful because it shows sighted children (and their parents) that her way of being in the world is surprisingly similar to theirs.

The programme is not perfect. Melody's Mum is unrealistically chirpy and patient, their home is always wonderfully tidy and Melody is the best-behaved child I have ever come across. More worryingly, she never seems to play with anyone her own age and lives a weirdly isolated existence. And there is one aspect of the programme's premise which is in danger of reinforcing out-moded stereotypes of blindness. Melody loves listening to classical music and her imaginary stories are always triggered by the music she hears on her headphones. The power that music exerts over her is reminiscent of the myth which says that a blind person's other senses are somehow magically enhanced as a kind of 'compensation' for their lack of sight. This myth is dangerous because it posits blindness as lack, as something missing which needs to be replaced. In fact the producers handle this potential pitfall well: without falling into the trap of a mawkish triumph-over-tragedy narrative, the show manages to represent blindness in a wholly positive way. In fact, Melody's world couldn't be fuller and her blindness is celebrated as an exciting and creative force.

These minor misgivings notwithstanding, this is a truly ground-breaking programme in many ways. I have never come across anything quite like it and I hope it becomes a staple of preschool viewing for years to come. My only real regret? That it didn't exist when I was a little girl.

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 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.

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.'

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.)

My Perfect Day at the Paralympics

 

Waiting for the athletics to start at the Olympic Stadium

 

I spent Saturday 1st September at the London 2012 Paralympic Games with my husband and our two sons. I was expecting an informative and interesting glimpse into disabled sport: it turned into an amazingly moving and hugely exhilarating adventure.

The fun started as soon as we got off the Jubilee Line in Stratford. The crowds pouring into the Olympic Park were good-natured and exuberant and we were soon captivated by the atmosphere. The boys especially were made really welcome: their cuddly GB Mandervilles (see above) were petted by volunteer after volunteer and they loved high-fiving the giant pointy fingers directing us into the stadium. My white cane and I don't usually like crowds but I found navigation relatively easy thanks to the numbers of helpful volunteers and the mindfulness of other spectators.

It felt both comforting and liberating to be in a crowd made up of a healthy mix of disabled and non-disabled sports fans. Usually my cane attracts stares and sideways glances but here I blended in so much better than usual. It felt great to be carrying a cane and yet not be the centre of attention.  I have never felt prouder to be using a white cane than during the Paralympics.

So why was it such an amazing day? Here are my top 10 moments (in roughly chronological order):

1. Cheering on Team GB's Richard Whitehead to Gold in the T42 200m final and then singing our hearts out at the Victory Ceremony. I momentarily lost my voice afterwards!
2. Wishing I could run as fast as the super speedy blind runners and their guides in the women's T11 200m and T12 100m heats. 
3. Chilling with friends, cider and live music at the Bandstand
4. Meeting Manderville the Paralympic Mascot
5. Eating yummy food from around the world including fish, chips and mushy peas, sushi, thai green curry, mango and melon salad and ice-cream.
6. Shouting with joy at the Big Screen in Park Live as Ellie Simmonds won her Gold in the S6 Women's 400m freestyle.
7. Dancing the Macarena during 'Fan Time' at the Copper Box.
8. Being initially mystified and then quickly enthralled by fast-moving Goalball: the women's match between Denmark and Finland was especially thrilling.
9. Watching the Olympic Stadium turn all the colours of the rainbow as night fell.
10. Reading the water-words created by Julius Propp's bit.fall art installation under the Stratford Walk bridge on the way home.

Running Blind

Blind Runner and Guide Speeding Past the Sage

(photo courtesy of Steve Garrett / SportyPix)

My Dad started running marathons and half-marathons 32 years ago. As a child, I remember standing shivering on pavements around Tyne and Wear trying to spot him as he sped past en route from Morpeth to Newcastle (in the  New Year's Day road race) or from Newcastle to South Shields (in the now world-famous Great North Run). Little did I know that years later he would be running alongside me as my guide runner.

I took up running a couple of years ago but have only recently started running with a guide runner during races. Races are crowded and frantic affairs. I find it bewildering trying to run amongst thousands of runners who are constantly jostling for a clear piece of road. But with a guide runner by my side, I feel much more confident. Dad described the route to me as we went along, pointing out kilometre markers, water stations and, most movingly, the seven famous Newcastle-Gateshead bridges that I grew up with. It felt amazing to run past the Sage with the man who first took me to concerts there (and who now takes my children).

This is the first race I've done wearing my very bright RNIB tabbard. At first Dad and I were both worried about feeling self-conscious: it feels odd to advertise your disability in such a public way. But my travels with my white cane have shown me that announcing my blindness is only ever a positive experience. And so it was during the race. Runners were without exception courteous and mindful of our presence. And marshals and spectators along the route were enthusiastic in their applause and encouragement. And on a hilly course like the Great North 10k, every little helps.

In May I ran the Oxford Town and Gown 10k with another guide runner, my colleague and friend Cathy Thorin. She was a brilliant guide on a course that was narrow and very busy in places. But we were not wearing anything which told runners who we were. My recent run with my Dad suggests that fellow runners and spectators alike respond better to more obvious signs of blindness. 

Clash of the Canes

Clash of the Canes:

Old Cane goes right to left, New Cane left to right.

I was given my first long white cane a couple of years ago by Oxfordshire's sensory deprivation team. It is a functional and workaday kind of cane, solid and (until recently) reliable. But you couldn't call it elegant or sophisticated. When I was in Paris a couple of months ago, the roller-ball tip on the end of the cane got stuck in a metro pavement grating and came off. Once a kindly Frenchman had helped me locate it and stick it back on I continued on my way, anxious that my cane was no longer quite as robust as it had been.

So on my most recent visit to Paris I decided to treat myself to a new white cane. It felt good to be taking the decision to buy one (as one might buy a new handbag or hat), rather than having one thrust upon me at the taxpayer's expense and with no discussion of accessorisation. Fellow cane user Cathy Kudlick had told me that the Association Valentin Hauy sold some remarkably stylish French canes, and she was right. I tried three different ones and settled on a thin, sleek and lightweight model with a nifty folding device and a comfortable, yet attractive handle.

The following day I was walking home from the library. As I passed a particularly busy pavement cafe, something black and person-shaped zoomed out in front of me and I heard an oddly familiar sound. My new cane makes a comforting rattle as it goes along and the sound I heard was of another, similar, rattle, colliding with my own. Another cane user had come out of the cafe and our two canes had clashed. I didn't know whether to laugh or apologise so I clumsily did both. He grumpily accepted my apology as i would grudgingly accept an apology from someone who had carelessly walked into me because they weren't looking where they were going. I realised then that he hadn't noticed that I too had a cane. How embarrassing to be mistaken for an unobservant sighted person! I can't imagine what the beer and kir drinkers in the cafe must have made of our bizarre encounter.

In the heat of the moment I didn't explain his mistake, but gathered my wits and my cane and moved out of his way. Off he went down the pavement, oblivious to my own blindness and the things we might have had in common. I wish now that I'd gone after him and introduced myself. But I like to think that maybe one day he'll come across this blog and recognise himself.

Reading the White Cane

What does my white cane mean? I have enough sight to notice the sideways glances my cane attracts. (This post by another 'blind blogger' gives a great idea of what cane users can see). I don't use my cane all the time and quite often carry it neatly folded in my bag. So it must look odd when I unfold it and transform from sighted to blind.
So why do I only use it sometimes? And what does my using it signify?
After dark or around steps and other obstacles I use my cane to feel my way around. I sweep it in a wide arc in front of me to find kerbs, bollards, puddles and lamp posts. This is the kind of cane-use most readily associated with the blind but it is not the most important way I use my cane.
I have a long cane but mostly I use it as a symbol cane. (You know that a cane is being used in this way when it is carried so that it does not touch the ground). When held like this my cane has no practical function: it is purely symbolic, a sign saying "I don't see as well as you so you might like to move out of my way / use non-visual ways of communicating with me / expect me to step off the pavement in front of you if you are a car or bike / tell me who you are even if I know you really well or we had a conversation this morning." I tend to use my cane like this in busy or unfamiliar places and / or when I'm on my own. I'll always have it with me at conferences, in stations, airports, supermarkets and busy city streets. Once I took it with me to the library. This turned out to be pretty confusing for the librarian who couldn't quite grasp the fact that I needed help finding a book but that I was more than capable of reading it. I can see why my cane might cause a kind of interpretive panic: after all, I clearly have some sight (otherwise why bother with bifocals?) Stereotypical images of the blind always feature a white cane but actually only about 5% of cane-users have no sight at all. So a symbol cane says "I am happy to acknowledge my blindness to the world and in return you can feel free to talk to me about it."
It is a kind of visual shorthand which not only signals blindness, but also signals a willingness to talk about it. It is an offer of a conversation as well as permission to offer help. The problem is that the general public don't always know what my cane is trying to say. So every time I take my cane out and about I try and tell someone what it means. And now you know too.

The Fabulous Kindness of Amelie Poulain?

In Jean-Pierre Jeunet's 2001 film Le Fabuleux Destin d'Amélie Poulain, the eponymous heroine devotes herself to a succession of fairytale-Godmother-like good deeds. One such endeavour consists of guiding a blind man across a road and along a busy street before depositing him at the entrance to the local metro station.

Watch video (in French)

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

Amélie's actions are certainly well-intentioned, and the dazzling way that the blind man's face is lit up at the end of the clip suggests that Jeunet too thinks that this must have been a genuinely wonderful experience for him. But this way of thinking suggests that the blind are lacking something in their relationship with the world which they must rely on the kind-hearted to give them. That a world without sight is a world without knowledge, sensation and community. That sight is better than no sight. This is perhaps not a surprising reaction from a film-maker. But what if this blind man relates to the world in a wholly different way? What if the pictures he gets from hearing, touching, smelling and tasting the world are just as fulfilling as Amélie's and Jeunet's fetishization of vision? Or, more worryingly, what if Amélie's unsolicited arrival in his life has shown him a world that he was not even aware of? Will he be left happy and grateful to have experienced more fully the world around him? Or will he be left feeling miserable and inadequate, having discovered that others prize most highly a sense that he does not share.

The Association Valentin Hauy has recently produced a series of short films about how the sighted can best relate to the blind. I'd like to think that these films were made as a reaction to Jeunet's film. I like them for their humour and common sense. They deal with everyday situations in which the sighted might interact with the blind: on the street, at a restaurant, at work. Unfortunately these are in unsubtitled French but the message of these films is simple: treat the blind as independent and autonomous individuals rather than assuming that you know better than they do how best to relate to the world.

Introduction: Personal and Professional Blindness

This is a blog about blindness. It is about my experiences of my own partial blindness but it is also about my current research into French representations of blindness.

I have spent this week working at the library of the Association Valentin Hauy, 5, rue Duroc, Paris 75007. The library has an incredible collection of French nineteenth-century novels about blindness.

(This image shows me standing outside the AVH: 

it is the first ever picture of me and my cane)

As this project develops I will post my findings here. I will also post my experiences of being a partially blind person in a resolutely sighted - or ocularcentric - world.