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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.







Wednesday, 13 April 2016

Jacques Semelin


In November 2014 I was pleased to give a keynote lecture at the French Autopathographies conference organised by Dr Steven Wilson at Queen's University, Belfast. As well as discussing Thérèse-Adèle Husson's Reflections (1825), and Le scaphandre et le papillon by Jean-Dominique Bauby, I talked briefly about Jacques Semelin’s 2007 autopathography, J’arrive où je suis étranger. Semelin’s account of his gradual acceptance of his own blindness touched me deeply when I read it because it resonated with my own experiences of denial, dissimulation and eventual celebration. To coincide with the publication of his second book about blindness, Je veux croire au soleil (which I review here), I share below some of my thoughts from the Belfast talk.
Unlike Husson, Semelin did not go blind as a child. He grew up completely unaware of his degenerative eye disease which was only discovered during some careers counselling he had in high school. At the age of 16 he was told that his sight would soon start to weaken and that he would go completely blind at an unknown and unspecified point in his life. Semelin is a renowned and well-respected historian and political scientist who is a researcher at the CNRS and a lecturer at Sciences-Po. His successful career might suggest that his story could be interpreted as a typical ‘triumph over tragedy’ narrative about how he battled to overcome his disability to lead a ‘normal’ life. But Semelin’s story is far from being the kind of cloying and self-pitying ‘inspiration porn’ which some non-disabled people enjoy. Instead he offers a practical, humorous and thoughtful account of how he has come to appreciate the kingdom of the blind in which he now finds himself:
Maintentant que j’y ai mes repères, je dirai que ce pays a du charme, qu’il est quelque part envoutânt, que vous pouvez y découvrir de nouvelles Muses.

Semelin’s frank descriptions of his early diagnosis emphasize the dangerous and degrading objectification which is one of the unpleasant effects of the medicalisation of disability: 
Jamais je n’avais encore eu la sensation d’être considéré comme un cobaye, une variété exotique d’une espèce pathologique. Désormais c’était fait. En quelques seconds ils m’avaient transformé en une chose clinique.

 Unlike Husson and Bauby, Semelin is at first able to hide his disability from those around him. His narrative charts his increasingly unsuccessful attempts to ‘pass’ as non-disabled and his eventual decision to ‘come out’ as partially blind by using a white cane and asking for adjustments to his working environment. Semelin’s desire to ‘pass’ demonstrates the extent to which he has internalised the widespread view that disability is a negative, undesirable state which should be hidden rather than celebrated. As he points out when describing his years of eco-activism:

 C’est bien plus tard que j’ai pris conscience de la gêne que mon attitude avait suscitée autour de moi. En fait, j’étais alors engagé dans deux batailles, l’une certes aux côtés des paysans du Larzac, et l’autre contre moi-même, contre celui que je redoutais de devenir et que pourtant j’étais déjà.

 Alongside Semelin’s recognition of his ableist desire to deny his own disability, we also find in this quotation a surprising reference to others’ feelings which he seems to prioritise over his own. Semelin’s desire not to embarrass his non-disabled friends betrays a concern for ‘normality’ which sits uneasily alongside his celebration of blindness. In the early stages of his journey, Semelin has a somewhat contradictory or conflicted view of his own disabled subjectivity which reminds us that even the most proudly ‘out’ disabled people sometimes struggle to reconcile their position with the ableist views they are continually exposed to by non-disabled society.
For me, one of the most striking things about Semelin’s story is the honesty with which he interrogates his at times knowingly ‘ableist’ perspective. Shortly after he has become officially registered blind he says:


Je ne parvenais pas à me définir comme handicapé. Le mot handicap me mettait mal à l’aise.  [...] il me pesait terriblement, comme si on m’avait mis un boulet au pied. D’ailleurs, handicap par rapport à qui ? à quoi ? Chacun n’est-il pas handicapé quelque part ? Il y a simplement des handicaps plus ou moins visibles, plus ou moins « handicapants ». Le mot n’exprime t-il pas avant tout un jugement normatif, pour se mettre à distance de la différence ?

This quotation illustrates the conflict which characterises Semelin’s work. He seems to agree with the negative connotations attached to disability whilst at the same time acknowledging that these connotations are nothing more than constructs of a resolutely normative society.
Because Semelin is never completely at peace with his disabled status, his narrative invites us to question are own internalised ableism. And as the book goes on, he does begin to celebrate his blindness for its own sake, as an positive feature which helps him relate to the world in different and perhaps better ways:

 La perte de la vue n’est pas une tragédie en soi, elle peut même être une puissante source de renouvellement et d’enrichissement.
Regular readers of this blog will recognise how Semelin's assertion that blindness is not a tragedy echoes my own approach to blindness.

Thursday, 28 January 2016

Making Space for Accessible Art

Yesterday I was delighted to welcome Blind Creations artist David Johnson back to Royal Holloway. David’s large-scale outdoor installation ‘Too Big to Feel’, which was commissioned for the Blind Creations conference held at Royal Holloway in June 2015, is now part of the College’s Art Collections.


This picture shows 'Too Big to Feel' by David Johnson on the grassy slope below the hockey pitch. The piece is made up of 18 concrete domes, 17 of which are painted white, and 1 of which is red. They look like giant Braille dots and spell out 'Seeing Red' in grade 2 (contracted) Braille. 

Yesterday David presented his work in the context of the College’s ‘Making Space for Art’ lecture series.


This picture shows David during his talk. He is standing in front of a screen on which we are shown an image of 'Too Big to Feel' in its first location in front of the Founder's Building. (Photo by Ruth Hemus)

I particularly like the way that ‘Too Big to Feel’ celebrates the creative potential of Braille whilst at the same time raising questions about the opacity of language and its meanings more generally. By making Braille both the subject and the medium of his work, David invites non-blind people to engage imaginatively with the techniques blind people use to read and write. Rather than being the reserve of a few, Braille becomes visible to, and touchable by, everyone. Blindness’s creative potential is thus celebrated and assistive technologies are consequently transformed into exciting and innovative ways of questioning our relationship with language and the senses.


This picture shows another of David’s Braille creations,  ‘Eggs’. Three casts of egg boxes sit on a table. Inside each nestle concrete eggs. The eggs are arranged to spell out 'egg' in grade 2 Braille. (Photo by Ruth Hemus)

David uses the screen-reading software JAWS to access his computer. By hooking his laptop up to the seminar room’s projector, we were able to see images of David’s works whilst at the same time hearing the computer’s audio prompts to him. This had the unintended consequence of demonstrating to non-blind members of the audience how screen reading technology works whilst simultaneously revealing its artistic potential. As he does with Braille, David uses JAWS in his artistic creations. His work ‘Rosie One’ is an audio installation in which the screen-reader’s response to a word document reveals both the arbitrary nature of language and the human brain’s ability to jump between two different interpretations of the same sounds.

You can listen to the whole of David's talk, including 'Rosie One' by clicking here.

As well as using various kinds of assistive technology in his work, David also works with friends and assistants in the creation of his art works.  David’s blindness means that there are times when he has to trust other people to make choices for him, particularly when he wants to include colour in his work.


This picture shows 'Citrus Corners': several black triangles, which have been made from casts of the inside of plastic bags, sit on a black perspex square on a table. The tips of these 'corners' have been painted yellow. David explained the process of communication involved when his assistant helps him decide which shade of yellow to use. (Photo by Ruth Hemus)

David’s collaborative art practices challenge the received notions that dependency on others is a sign of weakness, and that disabled people should strive for independence. During his talk, David asked each member to the audience to create a human figure out of plasticine.  At the end of the talk, he asked us to place these figures in a circle, facing inwards. The resulting artwork was a celebration of collaboration: on their own each figure meant nothing, but together they stood for the creative power of the group.


This picture shows the finished collaborate artwork. Fifteen green plasticine figures of various shapes and sizes stand or sit on a table. They are in a large circle and are all facing inwards, towards each other. (Photo by Ruth Hemus)

I am delighted that as a result of Blind Creations, my collaboration with David will continue. In February we travel to Boston to take part in a panel at the 2016 Transcultural Exchange Conference and David has also secured Arts Council funding to visit Art beyond Sight in New York and to present a pop-up exhibition in Montreal. We also hope to invite him back to campus later in the year to run more collaborative art-making workshops with our students.


Wednesday, 13 January 2016

My cataract operation 2: what I see now

This time last week I was awaiting the first of two cataract operations. On Friday, medics removed a dense cataract from my right eye. Thanks to the magic of general anaesthetic, I was blissfully unaware of the whole procedure. And since I removed the bandages on Saturday morning, I have of course been trying to work out what difference this operation has made to my vision.

For the first 48 hours or so after the op I couldn't see much of anything out of my right eye. It felt very sensitive to light and I kept it closed most of the time. When I did open it for a few moments, everything was very blurry. But I could tell that the colour of the light I could see had changed. Instead of seeing everything through tinges of yellow and brown, I could definitely see white and blue again.

A few days later I am managing to keep my eye open most of the time and I have noticed three interesting things. Firstly, and not unexpectedly, my glasses no longer work. Because the new plastic lens is not exactly the same shape as the one that was destroyed along with the cataract, I'll need to get a new prescription. Apparently this will only happen around 8 weeks after the second operation. So I reckon I'm looking at at least three months of blurry. At the moment this isn't too much of an issue. I got used to life without my glasses when I broke them in November and I do my reading with my left eye so for now if I close my right eye I can more or less see as well (or as badly) as before my operation. This will of course change after the second op.

Secondly, things start getting very weird when I use both eyes for reading. This afternoon I was reading a text (appropriately enough, Kate Tunstall's translation of Diderot's Letter on the Blind) using the kindle app on my iphone:


This photo shows some text in the kindle app on my iphone. The text is enlarged so that there are 20 words on the screen. The words are white against a black background and towards the top of the screen a small blue footnote number (52) is visible. 

When I look at this screen with my right eye closed, the text is yellow and the footnote number is invisible. But if I use both my new cataract-free eye and my old cataract-obscured one, something very odd happens: two screens appear next to each other. The one on the right is the one I was looking at before. On the one on the left, the text is dazzlingly white and the footnote number is a beautiful, incandescent blue. It is pretty disorienting to see the same thing in two different ways. But it is also a useful way of measuring the difference the cataract operations will eventually make.

When I'm not reading, I've given up using my now redundant glasses. So, thirdly, everything is a lot more blurry than it was. But it is also much more colourful. I've discovered that my favourite grey cardigan is actually a lovely shade of navy blue and that I own a set of very brightly coloured plastic bowls. I'm still getting used to my new psychedelic world. I hope this post will give my friends a sense of how it is that at the moment my vision is both better and worse than it was before.