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Saturday, 16 July 2016

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'.

Monday, 11 July 2016

Book Review: 'Jules' by Didier van Cauwelaert


Since I discovered his Goncourt-winning Un aller simple in 1995, I have always loved Didier van Cauwelaert's quirky, touching and gently ironic novels. But my heart sank when I learnt that his most recent work Jules (Albin Michel: 2015) tells the story of a blind woman whose sight is miraculously restored. I was worried that this would be a simplistic celebration of the cure whereby Alice's new sightedness would bring her all the happiness and hope denied her by her blindness.

The novel's opening page did nothing to allay my fears. When the sighted narrator Zibal first glimpses still-blind Alice, his lascivious gaze objectifies her by its insistence on her physical appearance:

Hauts talons canari, minishort rouge et top turquoise, elle ne risquait pas de se faire écraser par temps de brume. N’eût été le labrador qui la guidait au bout d’un harnais, ses grandes lunettes noires seraient passées pour un accessoire de star soucieuse qui son incognito se remarque. Les cheveux blond-roux maintenus par un chignon en broussaille, les seins libres sous la soie quasi transparente, un sourire de rendez-vous amoureux allongeant les bavures de son rouge à lèvres, c’était une aveugle particulièrement voyante qui faisait bien davantage envie que pitié. (Jules, Didier Van Cauwelaert (Paris : Albin Michel, 2015, p. 7)
Zibal’s emphasis on her physical appearance reduces Alice to nothing more than a collection of sexual attributes without taking any account of her personality, context or even name. She is nothing more than an anonymous ‘aveugle’ who is completely defined in relation not only to how she looks to him but also how she does not look at him. In addition, the form of the text further emphasizes Alice’s objectification. She appears to be defined according to the controlling gaze of a male first-person narrator whose words are motivated by his desire not only to possess her sexually, but also to possess her metaphorically by capturing her in and via his text. This dual act of possession is rendered possible precisely by the very thing which makes Alice attractive to the narrator, namely her blindness. Alice is unaware that she is being looked at in this way and is thus even further objectified by the silence of the controlling gaze and the conspiracy between the sighted gazer and the reader which it establishes.

Happily, this narrator-reader complicity is shattered by the irruption of Alice's voice into the text. As the narrative progresses, Alice and Zibal recount alternating chapters so that a dual first-person perspective is established which destabilizes what the reader thinks he or she knows about both blindness and sightedness. Unlike her friends and colleagues, Alice is not overjoyed when she regains her sight. Far from it. She is horrified by the world she can now see and feels abandoned and lost without her guide dog Jules:


L’enthousiasme autour de moi, l’émerveillement que suscite ma guérison me laissent un sentiment de solitude honteuse que jamais le handicap n’a provoqué. Le devoir de bonheur auquel je m’astreignais, par fierté et instinct de survie, est remplacé desormais par un simple code de décence. Je n’ai plus le droit d’aller mal. (pp. 86-7)

By regaining her sight, Alice has lost one of her defining features; she is no longer herself. It is almost as if she is in mourning for her blindness. She hates the person she has become almost as much as she hates the way her friends celebrate her cure. She sees every congratulation as a betrayal of her blind self, evidence that despite the fact that she was happy being blind, all her sighted acquaintances secretly thought she would be better off sighted.

Van Cauwelaert's sensitive depiction of Alice's reactions to her new state of sightedness is a startling reminder that blindness is not a tragedy. Through a fast-paced (if somewhat far-fetched) tale of love, loss and loyalty we meet a collection of wonderfully eccentric characters who encourage us to abandon our own misconceptions about beauty, happiness and the tyranny of appearances. Without giving too much away, this is a thought-provoking, surprising and engrossing tale about how we see each other and ourselves. Highly recommended.

Monday, 20 June 2016

Bravo for live Audio Descrption at Euro 2016!


When I applied for tickets for the UEFA Euro 2016 football tournament I did so because I wanted to experience the passion and excitement of live high quality football and I wanted to do so in my favourite country. I have attended live football before and know that nothing beats the thrill of the build-up, the noise of the fans and the atmosphere inside the stadium. I also (thought) I knew that it would be almost impossible for me to actually follow what was happening on the pitch. The players would be blurry smears of contrasting colours and the ball would move far too quickly for me to follow. I would have to guess the general pattern of the match from the reactions of the crowd around me and would fill in the gaps later by watching the highlights with my nose inches from the television screen.

Imagine my excitement when I discovered that a team of volunteers would be providing live audio description at the match! Armed with my portable FM radio and headphones I duly tuned in to 91.8 once settled in the stands. AD can often be fraught with technical problems so it was a relief to immediately hear a recorded message informing me that the service was working and that live commentary would start shortly before the match. Coincidentally, our seats were next to the press stand from where the audio description would be delivered: as soon as the technical team spotted my white cane they came over to check that everything was working and they lent me some special headphones so that the commentary would not be drowned out by the very noisy Swedish fans sitting round me. When I explained that I have a professional as well as a personal interest in AD they even introduced me to the two volunteer describers.

Lucas Carcano and Leandra Iacono are studying sports journalism in Nice and they have been specially trained in live football audio description. When we met before the match they described the layout of the stadium to me, gave me an idea of the look and behaviour of the two groups of fans and told me a little bit about the players’ warm up which was going on below us. Most importantly, they explained the system of zones they were going to use during the description. By dividing the pitch into four areas, labelled A-D, they could accurately give me the position of the ball throughout the game: for the first time I would be able to get a real sense of where the ball was on the pitch and follow the players as they moved around it. Like a television camera focusing in on the part of the pitch in play, Lucas and Leandra’s references to zones would allow me to focus my attention on the requisite section of the pitch.

Unlike AD tracks on film, which begin at the same time as the film does (thus rendering ads and trailers inaccessible), Lucas and Leandra started their description with the pre-match ceremony and described the arrival of the players, the display of flags, the national anthems and the fans’ reactions to it all. Without them I would not have known that all the Swedish fans were jumping up and down in unison whilst unfurling a giant flag with a tribute to Italy in one corner. By making me feel more involved in the build-up, their words pulled me into the atmosphere in a way I have never experienced before.

 As the game began I was immediately astonished and delighted by the energy and enthusiasm my describers put into their work. It was very soon apparent that as well as being accomplished journalists they were also extremely knowledgeable and passionate football fans. Without ever seeming to pause for breath they told me who had the ball, where they were passing it, who was waiting to receive it, who was tackling whom, when there were fouls and what the referee was dong about them and how and why the crowd was reacting as it did.
As well as focusing on the detail of the match, they also managed to give me a sense of the teams’ positions as a whole and how their tactics varied. I learnt that Sweden prefer long balls which are not always successfully recuperated, that the Italian goalie takes his time before every goal kick, that some players get up immediately after falling whilst others lie there moaning. They told me about near-misses and awkward turns, substitutions and injuries, yellow cards and free kicks; off-sides and corners. In lulls in the action they gave their impressions of the game, who was playing well, who looked tired, who was having fun. They combined detail with knowledge and facts with analysis in a unique and very appealing way: I felt not only that I knew what was happening on the pitch but also that I understood why it was happening and what it might lead to.

I was astonished by how much their audio description differed from radio commentary. Whilst radio commentators give more of a sense of the game’s action than television commentators do, they (paradoxically) fall far short of the detail of AD. Radio commentators tend to do as their name suggests: they comment on the action, often comparing the current game to previous performances or listing statistics and interesting facts about the players. They privilege banter over description and lapse into silence without explaining why the game has paused. On the other hand, Lucas and Leandra worked really hard to provide a rich and enriching aural experience. Whilst they did include some helpful background information, such as which players on opposing sides were team mates in club football, and how they were dealing with this on the pitch, they were focused on the flow of the game. This meant that I felt more immersed in the experience that I have ever done before. I must have experienced hundreds of match commentaries on television and radio. But this is the first time that I have felt so involved and included in the action. It was as if the detail of television close-ups was combined with the thrill of live action. There is no doubt that I got just as much - and probably more – out of the game thanks to Lucas and Leandra than the sighted fans around me.

After the match, and after I’d thanked them both about a thousand times, my describers asked me how they could make the service even better. I couldn’t really think of much that they themselves could do to improve what had been a truly remarkable description. But perhaps live sporting events could take some inspiration from current practices in accessible theatre: as well as offering live AD of selected performances, some theatres also offer pre-show touch tours where blind audience members are able to familiarise themselves with the set and even the actors. No doubt my experience would have been even more memorable had I been able to walk the pitch, touch the goal netting and perhaps even fondle Ibrahimovic’s muscles…

Lucas and Leandra are on duty again tonight for the match between Russia and Wales and I wish them both 'bon courage'. I also wish I could be there with them. Nothing I experience on TV or radio in the next weeks of the tournament will come close to the intensity and impact of their amazing live audio description.

With thanks to Julie Bertholon from the Federation des aveugles de France for telling me about the service, to my Dad for accompanying me to the match, to all the volunteers who helped me find seats, toilets and transport, and of course to Lucas and Leandra for quite simply transforming my experience of football.

Tuesday, 24 May 2016

Book Review: 'Je veux croire au soleil' by Jacques Semelin



Jacques Semelin, Je veux croire au soleil (Paris: les Arènes, 2016)

Part travel journal, part guide to living creatively with blindness, Jacques Semelin’s humorous description of his stay in Montreal is a charming and honest account of the day-to-day annoyances and joys of life as a blind academic.

Readers familiar with Semelin’s first memoir, J’arrive  je suis étranger (which I write about here) will remember that his gradual journey from sightedness to blindness was not an easy one. Semelin's internalised ableism meant that he spent many years doing his best to 'pass' as a sighted person before finally 'coming out' as blind. In Je veux croire au soleil he celebrates the new creativeness which his blindness has given him and reflects on how to make sense of his non-visual life for a sighted reader:
Je me suis mis en quête d’un autre vocabulaire, de métaphores, de mises en scènes, bref, de tous les moyens de mieux saisir le réel par l’imaginaire.

I found myself identifying particularly strongly with Semelin's description of the 'saut psychologique' (psychological leap) he had to make from independence to dependence. Like him I spent years finding ingenious ways of doing things for myself. And like him I resisted asking for help for as long as I could:
Se faire aider conduit bien plus tôt à reconnaître un effondrement de soi. On ne peut plus faire ceci ou cela. […] Se faire aider revient ici à devoir admettre son infériorité physique en quelque chose, une infirmité en somme.

Whilst the wealthy willingly pay for assistance as a way of asserting their dominance, Semelin recognizes that asking for - and knowing how to graciously accept - help is one of the hardest things a blind person must do. Having to be helped can feel like a loss of personhood and an acknowledgement of inferiority. But knowing when to accept help can feel like a liberation. I recognise in Semelin's references to pride and honour my own (sometimes unhelpfully stubborn) reluctance to ask for help. Perhaps this explains my dislike of taxis and my preference for public transport.
Il faut trouver la force de se pousser dehors. Quand on n’y voit pas il est toujours tentant de rester bien au chaud dans un lieu clos. L’extérieure reste angoissant. Mais la volonté de se prendre en charge et la curiosité de la découverte peuvent aussi vous attirer vers l’inconnu de la rue.

As well as learning how to fight his natural urge not to ask for help, Semelin also describes how he forces himself to leave his cosy flat and explore Montreal. His description of his solitary adventure down the busy rue Saint-Denis is a powerful illustration of the appeal of the sensual world he inhabits. His descriptions of snippets of conversation, cooking smells and the changing feel of the air on his face provide a non-traditional - but equally valuable - visitor's guide to one of Montreal's most famous streets. Semelin's sensual appreciation of Montreal is an evocative celebration not only of non-visual travel but also of the unexpected pleasures of being blind and alone in an unfamiliar environment. Semelin's wanderings are often punctuated by encounters with strangers and these chance meetings, and the stimulating and rewarding conversations which ensue, are a reminder that blindness's enforced dependence on others is a gateway to a shared humanity which is often denied the more self-reliant sighted traveller.
Les personnes qui n’ont pas l’habitude de côtoyer des non-voyants ont souvent tendance à craindre le pire pour leur sécurité à tort.

One of the most appealing aspects of Semelin's memoir is that it is not unremittingly cheerful. He is frustrated and annoyed by his landlady's pessimistic prediction of the problems he will have with dustbins and domestic appliances. Whilst appreciative of the new technologies which make his academic work possible, he is also right to point out that screen readers and talking smart phones are hampered by their reliance on sight-dependent software:
Ce sont les instruments quotidiens d’une dictature qui ne dit pas son nom et qui transcende les régimes politiques, celle de l’image.

In both Montreal and Ottawa Semelin was disappointed that museums - especially those dealing with the persecution of minorities - were largely inaccessible to him. I wonder what he would make of Canada's new human rights museum which recently opened in Winnipeg and which I write about here.
Pourtant une certaine amertume ne m’a pas vraiment quitté. Cette promenade a-t-elle ravivé la mélancolie que je sais toujours au fond de moi comme une nostalgie pour ce monde dont j’ai dû abandonner les rives voici bien longtemps ? Cela fait des années et des années que j’en suis exclu mais quoi que je fasse, une vieille douleur se réveille de tems en autres, comme en ce moment.

Semelin's work made me both smile and cry out in recognition. But it also made me nostalgic. Unlike him, I do not miss the sighted world, but I do miss the time when I too was a lone traveller in a francophone land. Maybe I'll go alone to Montreal one day. And maybe like Semelin I'll do battle with a recalcitrant microwave, relish the sounds and smells of the rue Saint-Denis and explore the wonderfully multisensory Cour des Sens at the Jardin botanique.



Monday, 23 May 2016

Jacques Lusseyran colloquium

I have recently been reading the work of blind academic Jacques Lusseyran in preparation for the one-day colloquium about him which I am honoured to be speaking at along with several friends and colleagues. The day is taking place at the Fondation Singer-Polignac in Paris on 28 June 2016 (coincidentally, and rather wonderfully, the first anniversary of Blind Creations at which Zina Weygand spoke so eloquently about him).

Although I do not necessarily agree with everything he says about blindness, I would argue that Lusseyran's celebration of 'inner vision' paradoxically celebrates the non-visual senses. He also advocates a no-nonsense approach to physical activity for blind people which echoes my adventurous approach to skiing.

This image shows the poster for the colloquium

The colloquium is free to attend and is open to all, but pre-registration is required. Click here for more information.

Thursday, 19 May 2016

In Praise of Screen Reading


Ever since I learnt to touch type at age 11, I have preferred writing on keyboards to using a pen. I could not function without my computer and I usually use Microsoft’s accessibility features (such as zoom, magnification and high contrast colour schemes) to help me read what is on the screen. But since my second cataract operation last week, I do not have enough vision in my left eye to read using sighted methods. So I have begun working using a screen reader.

Screen readers are not entirely new to me. Thanks to Blind Creations I have learnt about the practical and creative benefits of using screen readers. Artist David Johnson presented a fascinating screen-reader art installation at Royal Holloway earlier this year, and French writer Romain Villet has produced a playful and clever screen-reader dialogue. Both of these artworks exemplify the creative potential of blind technologies and celebrate blindness for its own sake.

I started using a screen reader myself last week because I knew that after my operation I would have at least a few non-visual weeks. Most blind people I know use JAWS but this software is expensive and complicated to use without training. I decided instead to install the free NVDA software (although I did make a donation to support their excellent work). I had heard that NVDA has less functionality than JAWS but it is working well for me and is more than enough to allow me to comfortably navigate around my laptop and use outlook, word and internet explorer.

As I still have some sight, although not enough to read with, I am using NVDA to read me what appears on the screen and to tell me where to click. As well as speaking the content of dialogue boxes, notifications and documents, it also transforms the cursor into an aural guide whose tone varies in an incredibly intuitive way as I move it around the screen. This is the easiest way for me to navigate around windows but it only works because I am familiar with the visual layout of my screen. If I didn’t know that the file menu was at the top left hand corner of the screen in word, I would never be able to find it with the cursor. I really like the way that NVDA caters for people who are partially blind and want to use a combination of sighted and blind methods.

Another bonus of NVDA, and one which I was not expecting, is that it knows when I am writing in English and when in French and adjusts automatically as word does. This avoids the incomprehensible and frankly hilarious franglais which is produced when VoiceOver reads me French text on my Anglophone iPhone

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So far I am finding NVDA surprisingly easy to use: I haven’t mastered all its subtleties yet but I know which keyboard commands (usually CAPS LOCK plus one or two keys) will read me letters, words, paragraphs or the whole text. This is the first blog post I have written using NVDA and It is no more effort than my more usual sighted approach. It does take longer because I am still learning, but the advantage of this is that I have more time to think about what I want to say and my prose is more accurate thanks to the built-in typo detector. As has been the case before with other blind technologies such as audio books and my white cane, I am wondering why it has taken me so long to embrace the screen reader. What a relief to be able to use my computer without hurting my eyes. I'm sure too that my posture will be better now that I don't need to sit with my face so close to the screen. I know lots of people who persist in using sighted methods even though screen readers would help them. A lot of people would find some screen reader features would combine well with a sighted approach. But our ocularcentric world dictates that our default technologies are often visual despite the clear practical (and artistic) benefits of blind ways of doing things. I am delighted that I have discovered NVDA and am sure that I will carry on using it even if/when I can use my left eye to read again.


Tuesday, 26 April 2016

Skiing Blind Again

Two years ago I went skiing for the first time. As this post shows, I had a great time and returned from Switzerland feeling confident, empowered and rather pleased with myself.

A couple of weeks ago we had another family ski holiday, this time in the very pretty Monterosa resort in the Italian Alps. This week was both much easier and much harder than my first time. For reasons that will become obvious, it wasn't quite the resounding success of my first ski adventure. But I am still glad I went, and I'll certainly go again.

In 2014 I found the whole pre-ski preparation phrase pretty overwhelming. I hated getting ready every morning and came to loath the hot, smelly boot room and the perilous walk out to the slopes juggling skis, poles, helmet, goggles. This time I was prepared for the hassle and handled it better. Luckily, as soon as people saw my 'blind skier' arm bands they were happy to help me carry things and be patient as I clambered clumsily into cable cars. As in 2014, I had booked a private instructor/guide to ski with me each morning and as soon as I met Chris I felt reassured and relaxed. From our first conversation he was open, honest and confident, which meant that I was too. And as I followed him slowly down the gentle nursery slopes, everything Jolanda had taught me came flooding back. I could still ski! Chris was impressed with my balance and control, and I was delighted that I could still do it.

Chris was so pleased with me after our first session that on day 2 he suggested we leave the nursery slopes and head up the mountain. This was something I had never done with Jolanda. I was nervous of course, but mostly excited: it felt amazing to be up so high, on fresh snow, with just distant sounds of other skiers for company. Chris had picked the easiest blue slope in the resort for my first 'proper' descent, but even so I spent quite a lot of that morning remembering what Jolanda had taught me about getting up after a fall. Luckily, the snow was soft and plentiful so falling didn't hurt.

It turns out that being on a nursery slope doesn't really prepare you for steeper slopes. The only way to learn to ski on steep slopes is to practise skiing on steep slopes. This inevitably leads to tumbles but by the end of day 3 I was feeling much more confident about even the steepest parts of the run. And as I got to know the slope better, I was even able to predict what I might need to do next.

Once I left the nursery slopes, it became clear to me that I would not be able to ski without a guide. Not only did I struggle to see the edges of the pistes, I also found it hard to know accurately which way was uphill and which way was downhill. Mountains are not man-made: they curve and bend at odd angles and slopes go up and down in surprisingly unpredictable ways.  

In the afternoons, I really wanted to ski with my family and friends. But they were all (much) better than me by now (although not good enough to guide me). So I reluctantly decided to curb my dare-devil instincts and enjoy some Italian café culture and sunshine whilst they tackled the resort's trickier slopes. This was hard for me, because I don't like to admit defeat, but it also felt good to be making decisions about my safety and confidently explaining my limits to others.

On day 4 the weather changed: it had been much colder than usual overnight and the snow felt brittle and hard under my skis. It sounded different too: when skiers passed me they made a terrifyingly loud rattling noise which made it much harder to hear Chris. I found it more difficult to control my skis on this new, hard snow and needed to quickly learn yet more techniques before reaching the steep bit of the slope.

Sadly I didn't get much chance to practise skiing in these odd conditions. Minutes later I fell and hurt my right knee. Chris called the rescue team who brought a stretcher to take me to the clinic. X-rays revealed a fracture at the top of my tibia.

As I lay in my hotel room with my leg in plaster my disappointment at my curtailed adventure was soon replaced with more worrying thoughts. What if this accident was proof that I should never have been skiing in the first place? What if it showed that blind skiing is a foolhardy, dangerous and irresponsible pastime which is bound to end in tears? I could imagine people discussing my accident: 'Well it serves her right for thinking she can do sighted stuff'; 'This is what happens when blind people try skiing'; 'Look at all the trouble and inconvenience her crazy thrill-seeking has caused.' What if my accident was evidence that there are things that blind people are better off not doing? I couldn't get these doubting, ableist voices out of my head. I was horrified that a little part of me actually believed that I had been wrong to want to learn to ski.

Maybe I was more likely to hurt myself than a fully sighted skier. Maybe not. I know of at least two other people who broke bones on the slopes that day. And the doctors in the clinic told me they see around 600 ski accidents per season. Skiing is a dangerous sport but I was very careful. I always skied with a guide and never tried anything I didn't feel comfortable with. My boys laughed at me for being too slow but I went at a speed that felt right for me.

On the whole I think I agree with blind writer Jacques Lusseyran who urges the parents of blind children to let them take the same risks as their sighted peers. According to him, 'there is a danger far greater than cuts and bruises, scratches and wounds, and that is a blind child's introverted isolation.' Broken legs heal (relatively) quickly and easily. Self-esteem and confidence can take much longer to mend. I am still a little embarrassed that I broke my leg skiing (what a cliché!) but I am proud and glad that I know what skiing feels like and I definitely intend to feel that indescribable rush of adrenaline again.