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'.

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.

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.

Smart Glasses Phase Two: Adding Detail

This image shows me shopping at the Oxford Cheese Shop in the indoor market. I am in the middle of the picture, gazing down at a mouth-watering display of goat's cheese (my favourites!) I am wearing a chunky black headset with some glasses mounted on the front. I am also wearing a black ruck sack (containing the laptop which is running the cameras on the glasses). To my right is another customer and behind me you can see the television camera which was filming me.

Last August I began working with a research team at Oxford University who are developing some 'smart glasses' which will provide additional information for partially blind users. As I explain here, I was hugely impressed with this new way of navigating and very excited that I could soon be walking around confidently (especially at night, in dappled shade, or in bright sunshine) without bumping into rubbish bins, bollards or other pedestrians. 

Not content with creating an image of the shape, size and position of solid objects, Dr Stephen Hicks and his team are now working on adding detail to the pictures displayed on the glasses. So, as well as telling me that I am approaching a pedestrian, the glasses will now reveal her facial features as well as what she is carrying or wearing. As well as telling me that I am approaching a shop, the glasses will now show me what is in the shop window and might even pick out the shop's name (although the team are still trying to find a camera accurate enough to capture small text).

This week I met up with Dr Stephen Hicks and his team again (along with a film crew from CBS) to discover how the latest version of the glasses might help me run some errands in one of Oxford's busiest and most visually confusing venues, the Covered Market.

I was astonished by the progress that Stephen's team have made in the past year. When I first wore the glasses nine months ago, I felt like I was in a science fiction film. This time it was more like being the heroine in Aha's iconic 1984 Take On Me video. When I put the glasses on I was plunged into an animated world where objects' outlines shimmered wonderfully in black and white.

I have always loved French cheese but tend to find market shopping frustrating. Labels and prices are impossible to see and I can never even tell which products the cheese-monger is pointing to when I ask for advice. I was eager to see if the experience would be any different in my 'smart glasses'.

The first thing that struck me as I looked at the cheeses on display was that I could, for the first time ever, distinguish their different shapes and sizes. My favourite goat's cheese, Crottin de Chavignol, has a distinctive cylindrical shape and I was delighted to discover three lovely Chavignols near the front of the display, all nicely highlighted by the glasses' clever use of dark and light:

This image is a screen-shot taken whilst I was using the glasses to choose my cheeses. Several white lines demarcate shapes on a black background. In the centre of the image, three cylindrical shapes - which I correctly identified as Crottins de Chavignol - are clearly visible.

After making my first purchase, I asked the cheese-monger's advice about another goat's cheese which would nicely complement the first. He recommended a milder one after tasting a sliver, I decided to follow his advice. Unlike Chavignol, this one was not sold in individual portions so I had to decide how much I wanted. Specifying this kind of detail has always been a challenge for me. Usually, when cheese-mongers hold up a piece of cheese, or make a 'bigger or smaller' kind of gesture with their hands, I can see neither the cheese itself, nor their hands. I generally just take what they are offering without being able to tell how much cheese I have in fact bought until I get it home. With the glasses, however, I could very clearly see the outline of the cheese-monger's hands as he held up a piece of Chabichou. I was confidently able to tell him that this was exactly the amount I wanted without running the risk of going home with far too much cheese (or, worse still, not enough!). After the glasses had also helped me check my change, I reluctantly handed them back to Stephen, I headed home with my cheese, satisfied, for perhaps the first time in my life, that I had made some informed shopping decisions based not only on help and advice from others, but also on what I confidently knew was in front of me.

This image shows my purchases with the

distinctive cylindrical Chavignol on the left
. Bon appetit!

Smart Glasses: Science Fiction becomes Fact

The 'bionic glasses'

Much as I love my white cane, it does not always keep me safe. It helps me avoid pavement-level obstacles like bollards and kerbs but it is not so good at detecting overhanging branches, open windows or head-level signs. In fact I always seem to have a bruise or a bump somewhere on the upper half of my body from an annoying or painful collision with an unexpected object of some kind.

Last week I took part in some fascinating research which might well put an end to these injuries. Dr Stephen Hicks and his team at the University of Oxford Department of Clincial Neuroscience are developing some 'smart glasses' which use a tiny camera and an LED display to create a live, real-time image of the size, shape and position of solid objects. This would mean that sign-posts, wheelie bins and bus shelters would become completely detectable, even in absolute darkness. (I forgot to ask Stephen whether the glasses would also detect the partially blind person's least favourite objects: mirrors, transparent walls, display cabinets and glass doors).

I spent two hours with Stephen and his team testing out the glasses. When I put them on I felt like a character in a science fiction novel. Like Jean in Maurice Renard's novella 'The Phony Man' I was suddenly seeing the world in a completely different way. Objects which would have been impossible for me to see shone before my eyes in shades of pink and white. I found the glasses incredibly easy to use and within minutes I was happily navigating my way round a series of obstacles. I would find these glasses especially useful at night, in glaring sunlight or in dappled shade. They would not only stop me from walking into things, they would also help me keep a watchful eye on my children who are often the first things to disappear when light conditions affect my vision.

Stephen and his team are still testing the glasses and are keen to hear from anyone who might find them useful. I'm hopoing to go back in a few months to have another go.

Cooking Blind

I was making some flapjacks the other day when my husband found me sitting on the kitchen floor with my left ear turned towards the open oven door. When he asked me what I was doing I explained that I was "listening to see if they were ready". He was amazed that I judge the readiness of food by what it sounds like; I was amazed that it has taken him 10 years to notice my way of cooking.

When I was a child I was scared of cooking. I was forever being told to take care of sharp knives and hot ovens by my understandably over-protective mother. And at school I remember being given a D- for Cookery because my efforts never looked as presentable as my peers' and my workspace always looked like a bomb had hit it.

Perhaps I would have been a more confident cook if my teachers had privileged the non-visual elements of cookery. Who cares what the food looks like as long as it tastes good? My cakes never look perfect but they are (almost) always delicious. And as someone who spends her life arguing against myths of beauty and symmetry, surely I should be the first to celebrate the 'different' appearance of my culinary creations.

Recently I have realised that despite cookery books' tendency to emphasise the visual nature of cooking through references to the desired colour and consistency, smell, touch, taste and hearing are in fact all I really need. I can tell whether a sauce is thickening by the way the spoon feels, and if a cake is ready by how springy it is. I listen for the sound of bubbling on the hob, under the grill and in the oven and always know if I've misjudged things when the smoke alarm goes off. Since I've started wearing glasses, they steam up horribly whenever I am leaning over a hot stove and my eyes water terribly whenever I peel an onion. I've tried all the old remedies, but have decided that chopping onions glasses-less and with my eyes closed is the only way to go. This is much easier and safer than it sounds: touch is all you need to feel the difference between skin and onion; in fact working out which layers to peel off with my fingers makes cooking a much more sensual experience. I've been chopping blind for a few months now and still have all my fingers intact.

Cakes and pasta are all very well, but meat is a different matter. I haven't yet worked out how to tell if a chicken is safely roasted without sighted help. And I'd worry about serving my children any kind of meat that I wasn't sure had been properly cooked. Much as I like to check the progress of my meals by having a quick nibble, food hygiene dictates that I shouldn't really snack on half-raw pork. So when I do cook with meat I tend to go for mince or well chopped pieces which I can be sure have been thoroughly cooked. I think I'll leave the more inventive meat cooking to others. After all, isn't that what restaurants are for?

Joined Up Singing

Like most people, I first encountered the Kaos Signing Choir for Deaf and Hearing Children when they performed the National Anthem at the London 2012 Olympic Opening Ceremony.

The Kaos Signing Choir at the Opening Ceremony

(Photo courtesy of Alex Hedley)

At first I was taken aback by the idea of a 'signing choir'. But as I heard and watched them perform I realised that they are a perfect embodiment of the inclusiveness of singing. Singing really is something that everyone and anyone can do.

I was in the choir at school and absolutely loved it. But although I knew how to read music, I could never see any of the music or words I was supposed to be singing. I learnt surreptitiously by ear, secretly copying those around me and mouthing along when I couldn't remember the words. This was fine at Christmas time, when we did the same carols year after year, but it wasn't ideal when we moved onto more complicated music. Even if I wore my reading glasses, I would have to hold the music so close to my face that any sound I made would be immediately swallowed up again.  

About four years ago I discovered that singing can be just as inclusive as the Kaos Choir demonstrates. 'Joined Up Singing' is a community choir based in Headington, Oxford. We sing music from around the world and every song is taught by ear. This means the tutor sings a line and we listen and then sing it back. This is repeated over and over until everyone can sing the whole song. We learn three or four songs a week and have built up a repertoire which we perform at local community events.

Joined Up Singing has taught me to listen better both to others and to myself. It has taught me that singing by ear can help ease stress, improve concentration and promote health and wellbeing. But most of all it has taught me not to hide my blindness. At school I pretended I could see much more than I can. Now I no longer need to pretend because sight is no longer a pre-requisite to singing. I can sing just as well with my eyes closed. And I often do. My favourite part of the session is the final fifteen minutes where we sing in the dark, with only a candle shining in the middle of the circle. I always close my eyes as soon as the lights go out (sometimes before) and revel in the freedoom darkness brings me. When I know that no-one can see me I forget about sight altogether and focus instead on making and hearing sounds.

There is no better time to start singing. The Kaos Children's Choir showed the world that singing can be inclusive. The wonderful Gareth Malone made choirs out of a whole range of unwilling or unlikely singers. And community choirs like Joined Up Singing put inclusivity into action by being open to everyone.

If this post has inspired you to join a community choir, the Natural Voice Network has information on choirs and events running throughout the UK

                   

How my Kindle changed my life.

I have always loved reading but I spend a lot of time on public transport. Isn't there something odd about this statement? Surely public transport is the perfect place to indulge in hours of uninterrupted reading? Not for me it isn't (or at least it wasn't until recently).

Reading in public is something which I used to find very hard to do. The glasses I use for reading mean that I have to hold books extremely close to my eyes. They almost completely block out my peripheral vision and make me feel both isolated and vulnerable. My reading glasses are unusual enough to attract (mostly unwanted) attention and unsightly enough to highlight me as an object of scrutiny, pity, or horror. But four months ago I bough a Kindle. I was going to a conference in the States and wanted to be able to read whenever and wherever I wanted: at the airport, on the plane, over breakfast, in the queue for coffee. I didn't want to have to fumble in my bag for my book and my glasses, clumsily take off one pair of glasses, replace them with the other pair, and then take up an uncomfortable position (back hunched, arms bent, head down) before even reading a word. By the time I'd done all that I would have got to the Starbucks counter or check-in desk and the moment would have been lost.

With my Kindle I can increase the font size so that I can read comfortably and for long periods of time with my everyday glasses. Sure there aren't many words per page but who cares when turning Kindle pages is almost effortless? Suddenly I can sit unobtrusively on the metro, in a cafe or in the park without feeling like I am on display. I no longer have a handbag stuffed full of different pairs of glasses and I can carry a much lighter (and more stylish) bag now that all my books are stored on one incredibly slim, light and portable device.

I had no idea how much changing the way I read would change the way I feel. I have become a much more confident, independent and purposeful commuter since starting to carry my Kindle everywhere I go. I seek out comfy seats and coffee opportunities in order to be able to lose myself in my latest book for a few minutes and have even stopped minding so much about the inevitable delays which occur on the Oxford-Reading-Egham journey.

But it turns out that Kindle reading isn't just for fun. Last month I gave my first Kindle conference paper. This was a complete revelation. Even when I used to print out conference papers in 20 pt bold I would still have to hold them pretty close to my eyes to read them out. And I'd frequently get lost in my wad of 60 or so sheets of paper and fail to acknowledge my audience at all. But reading my paper from my Kindle was a completely different experience. I finally felt like I was communicating with the audience and not just reading my paper to myself. Next I'm going to try giving all my lectures and seminars by Kindle. I'm looking forward to seeing how my Kindle will change my teaching as well as my students' experience of learning.