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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, 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.



Wednesday, 6 January 2016

My cataract operation

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

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

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

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

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

Thursday, 26 November 2015

The Day My Glasses Broke

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

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

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

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

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

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

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






Thursday, 15 October 2015

Blindness and Art: An Interview

This week I was interviewed by Paul Hammond of UCB UK. You can listen to the full interview below. Provided courtesy of UCB Media UK.