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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.

Tuesday, 6 October 2015

Exploring Human Rights in Winnipeg

I spent last week in Winnipeg, Canada where my tireless Blind Creations collaborator Vanessa Warne had arranged for me to give lectures and teach classes at the University of Manitoba and the Université de Saint-Boniface. I also enjoyed sharing experiences and insights with the Manitoba Disability Studies Network before exploring Vanessa's fascinating 'Books without Ink' exhibition.

On my last day, Vanessa gave me a tour of the Canadian Museum for Human Rights which has recently opened in Winnipeg. We had passed the imposing building several times during the week and I was eager to look inside.

This photo (taken by Vanessa) shows me 
standing outside the Canadian Museum for Human Rights. Behind me is the windowless metallic shell of the lower part of the building and the imposing glass and steel tower above it.

The museum begins by exploring various definitions of human rights. It goes on to focus on some historical moments when human rights were violated and ends with a look at what present and future generations can do to keep human rights abuses in the past.

In the gallery devoted to the Holocaust, I was interested to find a display on Nazi propaganda which includes a 3-D model of a head amongst its exhibits. The head, which represents a man with stereotypically Jewish features, was used by the Nazis to teach blind students how to recognise (and then presumably denounce) Jewish people.

This image shows a model of a stereotypically Jewish man's head in a display case. Next to the head is a beer tankard  with an anti-semitic slogan. Below the exhibits is the museum's explanatory text. 

As well as demonstrating Nazi Germany's racist attitude towards Jewish people, this head also reveals much about their somewhat contradictory attitude towards blindness. Although the existence of the head suggests that the education of blind people was taken seriously in Nazi Germany, it also problematically assumes that blind people go through life feeling people's faces. This assumption reveals an offensive lack of knowledge of the lived experience of blindness. Unsurprisingly, in a later display in the same room, we learn that disabled people were targeted by the Nazis because they were seen as an unproductive burden on society.

The museum is highly interactive but its multi-media emphasis means that much of its information is conveyed visually, through graphics, films and photographs. Vanessa and I were keen to know how the museum accommodates blind and partially-blind visitors. As we bought our tickets we met a very helpful staff member who was delighted to provide us with Braille maps, an iphone with an audio overview of each gallery (run with Voice Over) and a set of earphones which I could connect to individual displays for more information. This was undoubtedly my favourite accessibility feature and one that I have not come across elsewhere. Stations next to some exhibits allowed me to listen to audio descriptions of the displays whilst also providing audio versions of the printed labels. After a little bit of practice the tactile buttons were easy to use and it was even possible to accelerate the speed at which the text was read.

In this photo (another of Vanessa's) I am exploring a tactile keypad with my left hand whilst holding my white cane in my right. 

Although this feature was not available at every display, and some audio tracks worked better than others, the provision of earphones allowed me to appreciate the museum's content at my own pace and in my own way. This is not always possible with traditional audio guides which often rely on the visitor locating numbered labels within a gallery and which, because they are intended primarily for sighted visitors, can be unhelpfully visual in their use of language.

Given its subject matter, it makes sense that the Canadian Museum for Human Rights wants to be the world's most accessible museum and I would say it is certainly the most accessible space I have visited. But there is one aspect of the museum which betrays an oddly ableist approach to blindness and sightedness.

This photograph shows the museum's motto, 'From Darkness to Light'/'De l'ombre à la lumière' on the wall behind the ticket counter.

Both the museum's architecture and its narrative are built around a hierarchical binary opposition between darkness and light in which the 'darkness' of ignorance is replaced by the 'light' of knowledge as we progress from a past full of human rights abuses to a more enlightened future. As we walk further up the building's ramps (no stairs here!), the space becomes lighter and lighter until we reach the Tower of Hope, a glass viewing area overlooking the city of Winnipeg. Although it is tempting to see this darkness-to-light trajectory as an effective, if simplistic, representation of humanity's progress, I am tempted to see it as a more sinister demonstration of society's abiding belief in the superiority of sight in the hierarchy of the senses, a belief which leads to the privileging of sightedness over blindness. By celebrating the triumph of light over dark in the building's very fabric, the museum sends its visitors a powerful, albeit subliminal, message. Not only are we told that sight is synonymous with knowledge, we are also told that it is better to see things than to not see them. Such a message is dangerous because it reinforces a belief that most people do not even realise they have until it is challenged - that is, the belief that a blind person's lack of sight is, like the human rights violations to which it is unwittingly compared, a tragedy which should be eliminated by progress.

It is ironic that a museum which is so clearly committed to equality of access and opportunity - and which has got a lot right on that front - appears to embrace such an ableist message without even realising it is doing so.

Tuesday, 14 July 2015

Book Review: Look by Romain Villet

The image shows the front cover of Look by French author and musician Romain Villet which was published by Gallimard in February 2014. It has been reviewed in French on the vues interieures blog.

When Romain Villet discussed his work at Blind Creations, he made the point that it is difficult to talk in English about a book written in French. This made sense to me because since reading Look (in French) last year, I have been struggling to write about it in English here. This is because Look is not only written in the French language; it is also about the French language. French is not merely the medium through which the narrator - Lucien - expresses himself, it is also the subject of much of what he says. Lucien is a blind musician and avid reader who eschews visual description. Instead he recounts his life in Paris, his love affair with the elusive Sophie and their trek in the Atlas mountains through a mixture of clever word play, erudite literary references, poetic fragments and obscure allusions to musical scores. Whilst I found the novel by turns funny, moving and beautiful, I also found it frustratingly dense: there are so many intellectual references in it that I'm sure that I, like Sophie, don't properly understand everything the narrator is saying.

But as I listened to Villet discussing his work during the conference, I realised that this is the novel's point. A little like Herve Guibert's Des Aveugles [translated as Blindsight], Look uses deliberately difficult references to oblige the reader to question her relationship with the world. Just as Lucien often feels excluded from the sighted world in which he is forced to operate, so we feel excluded from his world of musical and literary references. And so we are forced to discover a wonderfully non-visual way of being in the world which is as rich, absorbing and stimulating as anything I've ever read.

As well as being a meditation on how blindness might create a different kind of writing, Look is also about how blind people read differently. (And as such it reminds me of my own way of reading in detail.) I particularly like the way the narrator describes how the digital revolution has changed his reading habits. Before text-to-speech software made some books accessible to blind people via the internet, Lucien would read Braille books borrowed from specialist libraries. Apart from never being able to own the books he loves, Lucien resents the fact that he can never annotate this reading matter with comments, underlinings or marginalia. He can neither personalise nor re-read but must commit every sentence to memory as if he would never encounter it again:
C’était, au fil des pages, la nécessité de se forger dans l’instant des souvenirs impérissables, c’était vivre chaque ligne avec l’intensité d’un adieu.
It turns out that Villet feels much the same. In a fascinating radio documentary (also in French), 'Victor et Moi' (available here), he demonstrates how his portable reader has changed his relationship with books. It feels particularly fitting that in the documentary he visits several places which provide accessible books, including the Association Valentin Hauy, where Blind Spot started.

Look is an important book - which deserves to be more widely known - because as well as these meditations on writing and reading blind, it offers a realistic, humorous and intimate portrait of life as a blind person. Lucien is wonderfully at ease with his blindness; he shares my belief that blindness is neither a drama nor a tragedy; it is just a (slightly inconvenient) way of being in the world. One example of his dry humour is his point that because blind people take longer to do certain things (like peel carrots), they should be given a third extra time in life as they are for their exams:
S’il y avait une justice, pour leur rendre le temps que leur volent leurs yeux, les aveugles auraient droit dans l’existence, comme pour passer les examens, à un tiers-temps supplémentaire.
But until Look is translated into English - an almost impossible task but one which I'd love to have a go at - its celebratory view of blindness will remain the preserve of the Francophone reader. Such readers will appreciate Lucien's thoughts on the intranslatability of blindness, a sentiment which the book's very existence ironically undermines:
Car la cécité est moins un enseignement dont j’aurais à tirer des conclusions, qu’une expérience indicible, intime, singulière, intraduisible dirais-je au risque d’enfoncer le clou, sinon en décrivant dans le détail ses manifestations. Il faudra, un jour, dépasser la noblesse du gâchis, il faudra raconter par-delà les brouillons invisibles, s’en donner la peine, s’en faire un devoir.