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.

  

Disability in Fiction: Astra

Astra by Naomi Foyle (Jo Fletcher Books, 2014)

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

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

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

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

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

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!!!'.

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.

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.

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.

Notes on Blindness

How can the medium of film illustrate blindness? British cinema adverts for audio description (such as this one), depict blindness as a blank screen where the soundtrack alone indicates what film you are missing. Going to the cinema with your eyes closed would have the same effect.

These ads might make a valid point about what audio description can add to the cinematic experience, but they do not give a very realistic representation of what it is like to be blind. Blindness is not at all like living with your eyes shut. Most blind people have some kind of visual perception and all blind people experience their lack of vision differently. Sight is one of five senses: but most sighted people have no idea how their other senses contribute to their perception of the world. A blind person's world is not a bleak world of darkness or blackness but a multi-faceted landscape informed by sounds, textures, smells and tastes. Blindness can sometimes feel like entrapment, but it can also sometimes feel like freedom. This is something that the makers of new documentary short Notes on Blindness have worked hard to capture.

Notes on Blindness, which premiers at the Sundance festival and on the New York Times website today, is a dramatisation of some of the original recordings of blind academic and writer John Hull. Hull lost his sight in 1983 after a long period of deterioration and his writings chart his responses to his own blindness. Notes on Blindness is a thoughtful and sensitive attempt to create a sense of what going blind might feel like. It would have been very easy to make this film into a heart-wrenching and tragic tale of Hull's descent into darkness. Instead, the film makers reject sentimentalism - even at the most poignant of moments - and (somewhat paradoxically) use the visual medium of film to emphasise both the bewilderment and panic felt by Hull, especially in the early days, and the subsequent richness of sense impressions which he comes to appreciate.

As the film progresses, blurry and disorientating images of pitch black coal mines and dizzying white snowstorms are replaced by scenes whose striking visuality is nonetheless secondary to their multi-sensory impact. My favourite part of the film is the rainfall sequence. Hull's words describe how he loves rain because he can use the sound it makes on objects to create an aural landscape where he gains a sense of size, shape and texture through sound. When he expresses the wish that rain could fall indoors, in a kind of constant watery audio description of sorts, we are shown a striking image of rain falling in his kitchen. This astonishing segment challenges the viewer's perception by asking her to think about rain - and thus about the blindness with which it is now associated - in a profoundly different way. 'Cognition is beautiful' says Hull at the end of the film. And this is a beautiful film which engages with blindness in a thoughtful and provocative way.

My thanks to the film's production team for letting me see an advance preview of the film and for sending me some stills to use in this post. A feature-length version of Notes on Blindness is now being made and you can keep up to date with developments on twitter (@intodarknessdoc) or on facebook.com/intodarknessdoc.