Blindness and/on the Radio

I have already written here about my exciting visit to Salford's Media City to be interviewed by Jenni Murray for BBC Woman's Hour back in September. Yesterday I was lucky enough to be back on the programme, this time talking about women and blindness.

My experience was still wonderful, but it was very different from my first time. Instead of travelling to Salford, staying over in a nice hotel, meeting the other guests and being surrounded by the hustle and bustle of a busy radio studio, I did the interview alone in a small room at Radio Oxford. Once I was connected to Salford, I exchanged a few words with the studio manager to check for sound levels, and then I tried to sit back and relax whilst I was waiting for my turn. The studio very kindly played me radio 4 through my headphones as I waited but I nonetheless had a lot of time to worry about what was going to happen. Despite the soothing effect of my favourite radio station, which has always calmed me in stressful or lonely situations, I had a hard job controlling my nerves and I was pretty relieved when my turn finally came.

As the presenter, Sheila McClennon, introduced our segment and asked me my first question, I suddenly went from being passive listener to active participant. Although I had done this before, I still wasn't prepared for how dizzying it feels being responsible for providing the content of a programme you have been happily listening to only seconds earlier. As the adrenaline started flowing my nervousness was replaced by a mixture of excitement and pride.

It is doubly fitting to be interviewed about blindness on the radio and over the phone. Radio presenters are brilliantly attuned to the non-visual nature of their medium. They build audio description into everything they say without even thinking about it and are always very careful to use interviewees' names each time they address them. This is primarily so that the listeners always know whose voice they are hearing. But it also helps phone interviewees know which questions are being addressed to them. When I described my long-distance intervention to someone yesterday, she immediately wondered how hard it must have been for me to respond to questions without being able to see the faces and reactions of Sheila McClennon and fellow guest, Denise Leigh. I resisted pointing out the irony of her observation. What she actually meant was how difficult it would have been for a fully sighted person. In fact it is incredibly easy for me to respond to questions put to me over the phone because I spend my life talking to people without seeing their faces. Where a sighted person might have noticed a lack of eye contact, I really love being able to talk without worrying about trying to see, or pretending to see, others' reactions. I am an expert at getting all my clues from sound: maybe this is why being interviewed on the radio feels like second nature to me. I went on Woman's Hour to try and explain that blindness is not a tragedy, a lack or a descent into darkness. It is just a different way of being in the world. If some blind people resent their sightlessness it is because we live in an occulocentric world which privileges sight over all the other senses. But it doesn't have to be that way. Anyone involved with radio, as listener, presenter, producer or contributor, already knows that blindness is not something to be feared, resisted or even necessarily cured. Whether we realise it or not, radio is a constant celebration of the power of blindness, a constant reminder that sight is not necessary in order to have a complete and fulfilling sense of the world.

Notes on Blindness

How can the medium of film illustrate blindness? British cinema adverts for audio description (such as this one), depict blindness as a blank screen where the soundtrack alone indicates what film you are missing. Going to the cinema with your eyes closed would have the same effect.

These ads might make a valid point about what audio description can add to the cinematic experience, but they do not give a very realistic representation of what it is like to be blind. Blindness is not at all like living with your eyes shut. Most blind people have some kind of visual perception and all blind people experience their lack of vision differently. Sight is one of five senses: but most sighted people have no idea how their other senses contribute to their perception of the world. A blind person's world is not a bleak world of darkness or blackness but a multi-faceted landscape informed by sounds, textures, smells and tastes. Blindness can sometimes feel like entrapment, but it can also sometimes feel like freedom. This is something that the makers of new documentary short Notes on Blindness have worked hard to capture.

Notes on Blindness, which premiers at the Sundance festival and on the New York Times website today, is a dramatisation of some of the original recordings of blind academic and writer John Hull. Hull lost his sight in 1983 after a long period of deterioration and his writings chart his responses to his own blindness. Notes on Blindness is a thoughtful and sensitive attempt to create a sense of what going blind might feel like. It would have been very easy to make this film into a heart-wrenching and tragic tale of Hull's descent into darkness. Instead, the film makers reject sentimentalism - even at the most poignant of moments - and (somewhat paradoxically) use the visual medium of film to emphasise both the bewilderment and panic felt by Hull, especially in the early days, and the subsequent richness of sense impressions which he comes to appreciate.

As the film progresses, blurry and disorientating images of pitch black coal mines and dizzying white snowstorms are replaced by scenes whose striking visuality is nonetheless secondary to their multi-sensory impact. My favourite part of the film is the rainfall sequence. Hull's words describe how he loves rain because he can use the sound it makes on objects to create an aural landscape where he gains a sense of size, shape and texture through sound. When he expresses the wish that rain could fall indoors, in a kind of constant watery audio description of sorts, we are shown a striking image of rain falling in his kitchen. This astonishing segment challenges the viewer's perception by asking her to think about rain - and thus about the blindness with which it is now associated - in a profoundly different way. 'Cognition is beautiful' says Hull at the end of the film. And this is a beautiful film which engages with blindness in a thoughtful and provocative way.

My thanks to the film's production team for letting me see an advance preview of the film and for sending me some stills to use in this post. A feature-length version of Notes on Blindness is now being made and you can keep up to date with developments on twitter (@intodarknessdoc) or on facebook.com/intodarknessdoc.

The Voice Part 3: I Didn't See that Coming

I do not usually enjoy reading autobiographies and I am especially suspicious both of 'triumph over tragedy' disability narratives and of autobiographies written in haste after the subject has been shot into the spotlight by winning a TV talent show like The Voice. So it was with some trepidation that I curled up with the kindle version of Andrea Begley's account of her rise to fame, I Didn't see that Coming. I have already written two posts about how Andrea Begley's partial blindness has been depicted and discussed: the first when I initially came across her in the show's so-called blind auditions and the second as she unexpectedly (and somewhat controversially) went on to win the competition. In both these posts I made the point that the public have a much more disabling attitude towards blindness in general, and Andrea's partial blindness in particular, than she herself does. I am delighted to report that Andrea's book is exactly what I hoped it would be: a humorous, clever and personal debunking of many of the myths of blindness which are still so inexplicably embedded in society's collective consciousness.

Andrea is refreshingly honest, practical and open not only about what she can and cannot see but, more interestingly, about how she feels about her partial blindness. She is never sad, self-pitying or mournful. Her partial blindness is never a 'tragedy', a 'hurdle' or a something to be 'overcome' or 'cured'. Mostly it is not even an issue and occasionally it is an 'annoyance' or a 'frustration' which Andrea approaches with a wonderfully self-depreciating mixture of mischief and fun. But Andrea is very careful to emphasise that she is not a superhero. She has no extraordinary powers of hearing and is not one of those relentlessly perky 'super-crips' who feel the need to over-achieve as a kind of 'compensation'.  She is simply hard-working, well-supported and ambitious and she has got where she is through a combination of an unforgiving work ethic, lots of luck and a fair bit of talent. Anyone who voted for Andrea to win The Voice out of misplaced feelings of sympathy and pity has completely misunderstood what her partial blindness represents.

It is hugely important to have disabled people in the public gaze. But this is not so that other disabled people can feel 'inspired' to 'overcome' their own particular 'struggles'. Such an approach serves only to further stigmatise disability by distancing it. Rather, we need people like Andrea to write their stories so that the so-called 'able-bodied' can begin to understand that disability is not a necessarily negative condition deserving of pity and condescension. I think Andrea's book should be required reading for anyone who has ever looked at a disabled person with sadness. Not only does it answer many of the 'Is it okay to...' questions which worry the non-disabled, it also completely demystifies life with sight loss.

If I have one criticism of Andrea, it is that she readily admits that she relates to the world in a sighted way. She went to a mainstream school and has always learned by sighted methods where possible. She would still rather not use a white cane and has never learnt Braille. She does now use audio books and screen-reading software but I suspect that she would rather describe herself as 'partially sighted' than 'partially blind'. Andrea's resolutely sighted approach to the world is further evidence that we live in such an oculocentric world that even the partially blind feel the pressures to conform to sighted ways of being. But now that she is in such a prominent and powerful position, Andrea has the chance to further dismantle the sight-based myths which her book begins to attack. I'd like to see her wield her white cane in public more proudly and celebrate the power of the tactile by learning Braille.

Blindness in Fiction 7: Blind Spot by Laura Ellen

This novel is the first novel I have come across to feature a partially blind protagonist / narrator. 5 of the 6 other novels I have reviewed so far feature totally blind central characters and the 6th, the Adrian Mole series, only makes passing reference to the diarist's partially-blind friend Nigel. It is easy to think we know what it is like to be totally blind. We think that by closing our eyes we get a glimpse into the dark world of the unsighted. In fact, most people who appear blind perceive some light or movement. And the minority that see nothing at all do not necessarily experience the world as blackness. But for reasons that I have yet to fully understand, this is the image of blindness which popular culture favours. It is much more difficult to imagine what it is like to be partially blind.

Laura Ellen's first novel Blind Spot offers a detailed and emotionally-charged insight into the world of a teenager with juvenile macular degeneration. The narrator's descriptions of unknowingly walking past friends, struggling to read the board or take notes in class, fumbling with a tricky locker combination and failing to find people at lunch are a strikingly realistic portrayal of what it can be like to live with low vision in a sighted world. At the beginning of the book, Roz is not a particularly agreeable character: she is superficial, self-absorbed and aggressive. But worst of all, she is in denial about her blindness. She has internalised the American High School dream and desperately wants to 'pass' as 'normal'. She jumps at the chance of dating the captain of the hockey team and despises the other students in her 'Special Ed' class. In short, she is ashamed of her disability. She stubbornly hides her eye condition from her classmates and would rather appear rude, stupid and stand-offish than blind.

I found it difficult to like a protagonist who seemed to so uncritically subscribe to the 'blindness as tragedy' school of thought. But Roz's character was more complicated than I first gave her credit for and the book is about much more than her eyes. She was not in fact in denial about her eyesight, but shrewdly aware of high school society's inability to cope with difference and more ready to play along than to attempt to change the system. Nevertheless, her belief in Ruth's ability to get a job in the 'real world' testifies to her pro-disability-rights tendencies and her desire to understand how Tricia died crucially demonstrates her conviction that all individuals matter equally.

Aside from noting how the politics of blindness were explored in the novel, I was especially interested in how Roz's macular degeneration affected both her narrative and her crime-solving abilities. In a book about challenging both literal and metaphorical perception, it would have been easy for Ellen to equate Roz's poor vision with lack of knowledge, poor perspective or flawed insight. But although Roz's inability to distinguish faces, cars or the details of a photograph meant that it was hard for the authorities (and sometimes the reader) to believe her version of events, in the end it was not what Roz could or could not see which mattered, but what she did about it. Ellen seemed to be saying in fact that good eyesight was overrated, and that it was certainly not a necessary prerequisite to successful sleuthing.

This book could have become a saccharine story of redemption and acceptance. Instead it has no real conclusion. The mystery of Tricia's death remains unsolved and Roz's attitude to her disability unresolved. As well as perhaps promising a sequel, this lack of closure serves to highlight the ongoing nature of Roz's relationship with her blindness. Whether she likes it or not, she will spend her life answering the sighted person's favourite question: 'But what can you actually see?' and the answer she gives will change on an almost daily basis.  Her desire to 'pass' will co-exist with her need for magnifiers or white canes which mark her out as different in a world still obsessed with the normal.

It is wonderful to find a mainstream YA novel which features a partially blind protagonist. Disabled characters are still woefully absent from fiction and when they do appear they tend to reinforce rather than challenge stereotypes. This novel is refreshingly free of disability preconceptions and comes highly recommended.

Audio Description (3): Even better for Action

Katniss looks towars two other tributes at the start of the 75th Hunger Games.

I had my first audio description experience around 18 months ago and - as this post shows - I was absolutely blown away by it. Since then I've had a couple of disappointing experiences where the AD didn't work: as it only starts at the beginning of the film it is always too late to fix it if you don't want to miss the beginning. After a very helpful email exchange with Odeon, we have realised that AD works best in certain, quite specific, parts of the auditorium. Last night, when I picked up my AD headset, the usher was enormously helpful. He accompanied me to the auditorium, showed me where I should sit for best coverage and came back at the start of the film to check everything was working. I am so glad I persevered with AD and didn't just give up: if I hadn't got in touch with the cinema and asked them to find out which seats have optimum coverage I wouldn't have had such an amazing cinematic experience last night

I already knew that AD works brilliantly for costume dramas but last night I discovered that it is also a fantastic addition to fast-paced action films. Because it is set in a futuristic and imaginary world, The Hunger Games: Catching Fire is full of objects, people and settings which are unfamiliar and therefore difficult to guess at. When I use my eyes to interact with the world I rely mainly on context to tell me what things are. If I see a dark, circular shape on my son's bed, I am pretty sure it is either our cat or his folded up dressing gown. But if I saw the same shape lying on, say, the floor of my office at work, I would have absolutely no idea what it was until I touched it. The AD in The Hunger Games told me about all kinds of key plot-related objects - such as brooches, bracelets, lockets, axes and red-tinged drinks - whose significance I would otherwise not have understood.

I knew that AD would also be incredibly helpful for identifying the various tributes. As they were all wearing the same uniform during training and in the arena, it was impossible for me to tell them apart. And when the dead tributes were projected into the night sky, my describer helpfully told me their names and districts. (I have it on good authority that sighted viewers did not always have access to this information). But I was surprised to find that AD really comes into its own during fight scenes. The speed and darkness usually associated with such scenes make them impossible for me to follow. I tend to sit back and enjoy the general atmosphere knowing that the outcome of the fight will become clear at some point. With AD I was completely immersed in the action, utterly captivated and more involved in a film than I have ever been. It makes we want to re-watch every single film I have ever seen to fill in all the gaps I now know there must be.

 It is hard to describe the effect AD has on my film-going experience but I suspect it might be compared to the addition of 3-D. For obvious reasons I have no idea what the appeal of 3-D is, but I imagine that it gives the sighted viewer the kind of ultra-intense cinema experience that AD gives me. AD is neither intrusive nor unwieldy. It is an art form in its own right, an enhancement, an amelioration. It becomes part of the film itself, enhancing the action like a good football commentary might. It more than doubles the pleasure I get from a film. My only regret is that it does not also exist in real life.

Blindness in Fiction 6: She is Not Invisible

She is Not Invisible  is a Young Adult mystery thriller by Marcus Sedgwick. I was keen to read this book when I heard - via the facebook Disabookability group - that it is narrated by blind protagonist Laureth. Books with blind narrators are relatively rare. In my experience, most books featuring blind characters are narrated by a sighted person who describes the blind character from a sighted person's point of view. It is wonderfully refreshing for me to read a book whose vision of the world is close to my own. Not only is Laureth very attuned to the smells and sounds which surround her, she is also wonderfully self-aware. She is thoughtful and articulate about what it is like to be a blind person in a sighted universe, and she is particularly interesting when she talks about what she feels she has to do in order to make sighted people feel more comfortable around her.

By the end of the novel I was utterly in love with Laureth. And I really hope she reappears in future Sedgwick novels. But for the first few chapters I was very angry with her. Laureth spends the early part of the book pretending she is not blind. She goes to the most confusing of public places, an airport, and attempts to 'pass' as fully sighted. When I first read these parts of the book I was furious. Why, I thought, is she so intent on hiding her condition? Is she ashamed of being blind? Has she internalised all the stigmas associated with blindness to such an extent that she refuses to accept her own reality? Doesn't she realize that this kind of denial emphasizes the 'blindness as tragedy' trope which is all too common in both fiction and the media? Doesn't she know that a white cane can function as a badge of honour, not a symbol of shame? Doesn't she realize that by 'outing' herself as a strong, funny, capable and caring blind girl she could teach every sighted person she meets not to judge people on how they do (or do not) look?

I very nearly gave up the book at this point. But I was already hooked by the beguiling storyline. And I was curious to see how far she could get. I'm glad I persevered. As the book goes on it becomes clear that Laureth has very good reasons for hiding her blindness. And these are related to plot rather than to her own identity. She is in fact a mature, thoughtful, adventurous and practical teenager who will do anything to keep her family together. Throughout the book the author throws in a number of apparently incidental details which subtly tell us that Laureth lives a life which is just as fulfilling as that of any other sixteen year old.

More than Laureth's healthy attitude to her own blindness, what I like most about this book is its plot. Without giving anything away, I can say that the plot is fast-moving, complicated and utterly compelling. It is the kind of book which keeps you reading and which leaves your head spinning with its own possibilities. What is more, as soon as you have finished it you will want to turn straight back to the beginning and read it again. But what I like best about the plot is that it is not dependant on Laureth's blindness. Unlike so many books which feature blindness, the essentials of the story would have been more or less the same had Laureth been sighted (except, perhaps for the presence of her two travelling companions). Aside from the scene in the hotel room in the penultimate chapter, where Laureth uses her blindness to her advantage, the action would have run more or less the same course. This is important because it shows that blindness is not the be all and end all. It is one element which can influence a person's behaviour. But it is not the over-arching defining feature. Laureth is blind but she is so much more. And in the book we learn that her blindness is not the most important thing about either her or her story.

I do have some misgivings about the book's portrayal of blindness. Although I can now see why Laureth hides her blindness at the beginning of the book, I still don't understand why she doesn't use a white cane later on. It felt odd to me that she didn't refer to one at all, not even to explain why she has chosen not to use one. Unlike her brother, Laureth is a bit of a techno whizz yet it doesn't occur to her to use the GPS function on her iphone (which would have been especially handy in NYC). The author has clearly researched his topic well and this book does much to undermine several stereotypes of blindness. But in his Author's Note, when he thanks the students and staff of New College Worcester, he makes one slip which I'm sure Laureth would have hated. He describes this school for the blind as 'a genuinely inspiring place to visit'. 'Inspiring' is one of the words disavowed by Disability Studies because it tends to paint disabled people as either awe-inspiring heroes or victims to be pitied, and in both cases as unfortunate beings who spend their days overcoming obstacles and battling against adversity. This depiction is in danger of aligning itself with the 'blindness as tragedy' myth which this brilliant book does so much to dispel.

My Problem with Children in Need

Pudsey Bear: the 'Children in Need' mascot

Last Friday the BBC ran their annual 'Children in Need' appeal to raise money for children and young people in the UK. According to their website, the 'Children in Need' vision is 'that every child in the UK has a childhood which is safe, happy and secure [and which] allows them the chance to reach their potential'. This year, nearly £32 million was raised on appeal night, as the British public watched a series of heart-wrenching films alternating with celebrity appearances, songs and features.

'Children in Need' is something of a British institution and I have watched it all my life. But it is only this year that I have begun to think critically about both the nature of the appeal, and the methods they use. Their aim is a laudable one, but shouldn't a happy, safe and fulfilling childhood be the birthright of every child? Why are we depending on the good-will of the British public to make this happen? Shouldn't it be up to the government to fund these services? Many of the projects featured on Friday's programme seem pretty crucial to me: hospices, bereavement counselling and assistance dogs don't feel like luxuries. They should be at the centre of a joined-up welfare system which ensures that every child is given what they need to achieve their potential regardless of where they live or their family's income. (Not to mention the problematic focus on the UK when children are dying all over the world right now).

Like guide dog puppies, children are hugely photogenic. It is easy to use sad music, well-chosen words and tragic images of cute children to guilt-trip the British public into donating a few pounds. Viewed critically, the 'Children in Need' appeal might be seen as a masterpiece of insidious manipulation. People give money because they feel sorry for the brave children who are struggling with truly terrible afflictions. For the next twelve months we are comforted by the thought of our altruistic act of giving and handily forget about the terrible unfairness of a welfare system which isn't doing the job it was surely meant to do. Giving makes us feel better, and there is no doubt that people are benefiting from the donations we make. Giving solves short-term problems but it does not necessarily help in the longer term. Charities are only as strong as their bank balance. If the money dries up, the projects vanish. This is why these services need to be centrally funded in a sustained and sustainable way. Rather than encouraging big business through enormous tax breaks, the state should pour as much money as it possibly can into making sure that every child in the UK automatically has a happy, safe and fulfilling childhood.

Another issue that 'Children in Need' conveniently forgets is the question of what happens to these children when they turn 18. Adult welfare and social care is woefully underfunded in this country and it is being cut dramatically even as I type. As well as (or instead of) giving money to 'Children in Need', please consider signing the WOW petition which calls on the government to completely rethink their welfare policies and priorities. Sick and disabled adults are much less photogenic than their younger counterparts. Yet they are just as much, if not more in need. I wonder how many disabled children featured on 'Children in Need' in the past are now disabled adults who are struggling because of government cuts and punitive welfare reform. Now that would be a documentary I'd like to see.

I have always felt a special bond with Pudsey, the 'Children in Need mascot. After all we both have an apparently inoperable eye-condition which doesn't stop us smiling. But increasingly I don't like  what he stands for. He uses the language of tragedy, pity, bravery and sympathy to get the British public to happily pay for services which our government should be providing. And he uses photogenic images and tear-jerking music to blur our critical judgement so that we stop asking why.