Fiction Featuring Blind Protagonists: A Bibliography

My academic research focuses on depictions of blindness in French literature. But I am also collecting examples of contemporary (ie post-2000) Anglophone fiction which features blind or partially blind characters. Below is the list of books I have read so far, along with links to blog posts I have written about some of them. More books will be added as I read them. Recommendations welcome.

• Comby, Cristelle, Russian Dolls: The Neve and Egan Cases Book 1 (2013) Thriller featuring a sighted student and her blind professor as an unlikely detective team.
• Doerr, Anthony, All the light we cannot see (Fourth Estate, 2014): epic, beautiful and moving World War II adventure set in Paris, Germany and St Malo. Highly recommended.
• Elkins, Kimberley, What is Visible (Twelve Books, 2014): extremely carefully researched, beautifully written and enthralling historical fiction about Laura Bridgman, the first death-blind American to learn English. Highly recommended. Blog post here.
• Ellen, Laura, Blind Spot (Harcourt Children's Books, 2012): young adult murder mystery featuring a partially blind protagonist / narrator.  Blog post here.
• Foyle, Naomi, Astra (The Gaia Chronicles) (Jo Fletcher Books, 2014): sci-fi / fantasy eco-utopia novel featuring, amongst other things, a character with one eye. Blog post here.
• Gillard, Linda, Star Gazing (Platkus, 2008); perceptive romance featuring a blind female protagonist and her sighted lover. Blog post here.
• Green, John, The fault in our stars (Penguin, 2013): teenage cancer coming-of-age love story.
• Halm, Martyn, V., The Amsterdam Assassin Katla Novels Series: Reprobate (2012); Peccadillo (2012); Rogue (2013): fast-paced and multi-layered thrillers featuring a professional assassin and her blind partner. Blog post here.
• Harris, Joanne, blueeyedboy (Doubleday, 2010): dark cyber-thriller with a blind protagonist and a surprising twist. Blog post here.
• Macgregor, Virginia, What Milo Saw (Sphere, 2014): sensitive and clever children's story where events are seen through the eyes of a boy with retinitis pigmentosa.
• Nussbaum, Susan, Good Kings, Bad Kings (2013): honest and hard-hitting novel set in a care home for disabled teenagers. One of the characters is partially blind. Highly recommended.
• Sedgwick, Marcus, She is not invisible (Indigo, 2013): young adult mystery thriller featuring a blind narrator. Blog post here.
• Walliams, David, Ratburger (HarperCollins, 2012): children's adventure featuring a blind villain. Blog post here. 

The Charity Dilemma

This blog was originally intended as a personal and professional response to my work as a partially blind academic in a resolutely sighted world. But as it has become more well-known, I am increasingly asked to write about various national and international initiatives related to sight and sightlessness. Whilst I am always happy to review books, films and other art works created by or featuring blind or partially blind people, I have very mixed feelings about helping charities promote their work. In this post I'd like to try and explain why.

Last week I was contacted by Blind Children UK who asked me to support their new campaign which aims to 'help raise awareness of the challenges faced by children with sight loss and the work that Blind Children UK is doing to help, by sharing their new 'Opening up the World' film online'.

A quick look round their website tells me that Blind Children UK do some great work. They help families access benefits and support services, provide mobility training for blind and partially blind children and produce customised large-print books for use at home and school.

Blind Children UK are clearly doing valuable and important work with children and their families. So why do I feel uneasy about endorsing their campaign?

There are a number of reasons. Firstly, as I said in my post about Children in Need, I don't think it should be up to charities to provide children and young people with essential services. Surely every child in the UK should have proper and equal access to educational and leisure activities no matter what their abilities. Shouldn't it be the duty of the government, funded by the tax payer, to ensure that every child's (and indeed adult's) access needs are met as a matter of course? By doing such excellent work, aren't charities actually letting the state off the hook? And the government isn't the only culprit. Why can't publishers work harder to provide a range of low-cost alternatives to standard print books? And why are libraries' large-print and audio collections always much more limited than their 'normal' print collections? After all, readers who can access 'normal' print can also read large print. And what if schools stopped mainly teaching using sighted methods and adopted a multi-sensory approach to learning where all children were taught to use all their senses to explore the world? Why not teach sign-language - or even Braille - as part of the national curriculum? If it is true that more and more children are being registered as blind or visually impaired each year, then surely it would make sense to put universal access into place now.

Secondly, a lot of work that Blind Children UK do is around what they call 'emotional support' for families. Unfortunately, we live in a society where the majority of people still think of blindness as a tragedy. This means that when a child is diagnosed with a visual impairment their parents have already been conditioned to experience feelings of sadness, worry or even mourning. But as I have said before, and will say again, blindness is not a tragedy. It is just a different way of being. Sure, it has its inconveniences, but life is often inconvenient for many reasons. People are not disabled by blindness, they are disabled by society's attitude to blindness. Whilst I'm sure Blind Children UK do a great job of supporting emotionally vulnerable parents, I would like to see a society where this kind of support is no longer necessary. What do we need to do in order for society to celebrate blindness? How can we rid blindness of its associations with stigma, weakness, passivity and failure?

Thirdly, I am very worried by the ease with which many charities - not just Blind Children UK - resort to the rhetoric of 'inspiration' 'overcoming' and 'triumph over adversity' to manipulate the public into pity giving. Perhaps I'm paranoid, over-sensitive or just plain critical, but I can't help seeing this kind of subtext in the 'Opening Up the World' film. I'd like to see this film as an illustration of the kind of pride that all parents feel when their children achieve things. But the combination of moving music, soft-focus shots and stirring visual metaphors (such as the swing's chain being slowly released) suggests that the film's producers want us to come away thinking that these children have achieved their various triumphs despite their blindness. One parent even says that her daughter is still smiling. In our minds we complete the sentence with 'even though she was born blind'. The subliminal message is that these are brave and determined children who have overcome great odds to get where they are. But children aren't born knowing what society thinks of blindness. They aren't born knowing that they see differently from other people. Walking, swinging and doing maths come just as naturally to blind children as to sighted ones. But if society conditions us to expect less of blind children, then even routine activities become momentous achievements in the eyes of parents, teachers and the world at large. And every time a blind child is called 'brave', the blindness-as-tragedy myth is reinforced. In their press release, Blind Children UK describe their film thus: 'It’s a beautiful film that shows how, with help, these children and their families are overcoming huge obstacles to build their lives. It really captures strength in the face of adversity.' This kind of sentimentalised description comes dangerously close to what Disability activists have called 'inspiration porn': read this brilliant blog post by Cara Leibowitz to understand how these kinds of images (which may be very well-intentioned) serve to perpetuate negative attitudes to disability.

Blind Children UK are no doubt doing a brilliant job of offering support to children and their families. But I'd also like to see them, and others, think about how to change attitudes to blindness amongst the non-disabled population more generally. For it is only when blindness has lost all its negative connotations and becomes an entirely unremarkable way of being that blind and partially blind children will be part of a society that is happy to have them.

The LEGO Movie: Being Blind is Awesome!

[Spoiler Alert: Read with caution if you haven't seen the film]

The LEGO Movie is one of the best films I have ever seen. It is clever, funny and beautifully designed. It is also a wonderfully surprising celebration of the power of blindness.

One of the film's main characters, Vitruvius (voiced by Morgan Freeman), is a wise and heroic wizard who guides the other 'Master Builder' characters, in particular the troubled hero Emmet, through the film. Like Dumbledore, (who in fact makes a cameo appearance in the film) he even returns in ghost form to help his charge. Vitruvius loses his eyesight early on in the film and as well as containing elements of Dumbledore (and his alter ego Gandalf), he is clearly created as a homage to Tiresias, the 'blind seer' whose lack of actual sight gave him clairvoyant powers. Some Disability Theorists might argue that this association between blindness and insight (an association which we also find in Victor Hugo's character Déa from L'Homme qui rit), downplays or even denies the physical experience of being blind by privileging blindness's symbolic meaning above its lived reality. And it is true that aside from his glowing eyes, it is hard to tell that Vitruvius is blind. He does not have a guide dog or a white cane (although his lollipop-stick staff might double as the latter) and his blindness is conveniently forgotten by the film-makers during a visual gag when he confuses Dumbledore with Gandalf because they look so similar (but importantly sound completely different). Perhaps this is why members of the LEGO online community fail to appreciate the positive side of blindness when they describe Vitruvius as 'a talented piano player, despite being blind'.

Braille cell or LEGO brick?

If the film's central blind character may not immediately appear to function as a celebration of the positivity of blindness, the overall message of the film is resoundingly anti-sight and pro-touch. Like 'The Man Upstairs' (Finn's father), the film's evil villain, Lord Business, wants to create a perfect LEGO world where each construction is permanently glued into place. This idealised LEGO landscape is adorned with 'Do Not Touch' and 'Hands Off' signs. In this impossibly perfect universe everything is made exactly according to the instructions, touching is not allowed, LEGO is to be admired not handled, the visual is celebrated and the tactile scorned. On the other hand, the Master Builders - who are of course led by Vitruvius - believe that LEGO is made to be played with, not glued into perfection. As Vitruvius's presence reminds us, you do not have to be sighted to enjoy LEGO. Indeed LEGO is essentially a tactile medium. Surely it is no coincidence that the iconic 2 x 6 LEGO brick has the same pattern of dots as the Braille cell. Despite the film's failure to produce a positive blind role model in Vitruvius, the LEGO Movie's celebration of the potential of tactility certainly suggests (to paraphrase the film's catchy soundtrack) that 'Being Blind is AWESOME!!!'.

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.

Where has (all the) Braille gone?

The Institut National des Jeunes Aveugles (INJA) in Paris was the first recorded school for the blind and it is still operating today. The Institut, which was founded by Valentin Hauy in 1784, moved to its current location on Blvd des Invalides in 1843. Louis Braille was a pupil, and then a teacher, at the Institut and developed his famous reading and writing system there between 1821 and 1825.

Given the crucial role played by the Institut in blind history, it seemed fitting that the opening evening of the History of Blindness and the Blind Conference would be held there. After spending the afternoon learning about the tactile inventions of Hauy, Braille and Foucaud at the neighbouring Musee Valentin Hauy (rue Duroc) it was a real pleasure to be shown around this venerable institution. I have walked past the Institut many times en route to the Valentin Hauy archive but this was the first time I had found my way inside.

As I admired the original architecture, peeked through the door of the classroom where Braille taught, and flicked through books in the library, I wondered how much has changed at INJA since the British aristocrat Sir Francis Head described the School in 1851. In his charming collections of sketches of Parisian places, A Faggot of French Sticks (available to read on googlebooks) Head describes his visit to the Institut in absorbing detail. He is particularly taken with the Braille writing and reading system which the boys are proud to demonstrate and he is very interested in the music lessons which he overhears. Even though his unseen observations of the blind girls at work has something voyeuristic about it, I like his description because it is refreshingly matter-of-fact. Unlike many nineteenth-century writers I have come across, he does not linger over the pitiful afflictions of the pupils or the tragedy of their condition. Instead he recounts how they get around the school unguided with an admirable absence of condescension or astonishment.

Head's comments are memorable because they reveal an approach to the blind which is more enlightened than many present day attitudes. It would never occur to him to ask 'are you coping?' for example. Part of this positive attitude may come from the fact that Head had recently been diagnosed with an eye condition: 'blephamphthalie' for which he was receiving treatment in Paris. But perhaps part of it also comes from the happy and healthy atmosphere of the Institut itself.

During my visit to INJA I was struck most of all by the absence of Braille. In our local mainstream secondary school which my (sighted) children will probably attend when they are older, there are Braille labels outside all the classrooms. But I found no such helpful signage in INJA's buildings. I came across no Braille books in the library and the only tactile objects in the classrooms were maps and globes. I was expecting INJA to be a haven for Braille users, a place where Braille proliferates, but instead it was, for all its blind history, an oddly Braille-free zone. The teachers were vague about its absence. They cited lack of funding and the fact that after a few weeks at the school students find their way around just fine. It also seems that advances in computer technologies mean that children are less willing to learn Braille because they no longer rely on it to read and write.

But that is hardly the point. Braille is still the universal language of the blind. If we want to see Braille used in the sighted world as a matter of course in public places like restaurants, museums and hotels, then surely the first School for the Blind should lead by example. Surely an Institut devoted to the education of the blind should have a political investment in the proliferation of Braille?. As I felt for the Brailled number 7 button in my dingy hotel lift, I wondered what Head would have said if he could have returned to INJA today.

Guide Dogs for the Blind

This signed photograph showing Blue Peter presenters in 1985 was one of the exhibits in the 'Who is Blind' exhibition organised by the College of Optometrists

One of the most interesting papers I heard at the recent History of Blindness conference in Paris, was Dr Monika Baar's fascinating and thought-provoking presentation: 'Guide Dogs for the Blind: A Transnational History'.

Anyone who grew up in 1980s Britain will remember the Blue Peter Guide Dogs for the Blind campaigns. Blue Peter was a popular children's television programme which encouraged its young viewers to collect silver foil and milk bottle tops to raise money for Guide Dogs for the Blind and the programme often featured reports on the work of guide dogs and their trainers.

Baar's presentation made me wonder about the unintended consequences of Blue Peter's work with Guide Dogs for the Blind. There is no doubt that guide dogs have changed the lives of thousands of blind and partially sighted people. Indeed I met several blind people in Paris whose mobility and Independence have improved thanks to their partnership with their dog. But the image of blindness conveyed by Guide Dogs for the Blind is far from positive. And this is in danger of having an ironically detrimental effect on the lives of the very people the association is hoping to help. As the sentimental music and condescending tone of this promotional video suggest, blindness is presented here as a pitiful, even tragic state which leads to depression, isolation and misery. Sighted children (and adults) who are exposed to such material might be forgiven for thinking of the blind as a sub-group of needy and pitiful individuals. But none of the dogless blind I met in Paris were anything like these stereotypical images. They were classic conference delegates: clever, funny, disorganised, sociable, irreverent and always up for a drink. Guide dogs certainly have their uses, but they also have their limitations. One blind delegate, an experienced and enthusiastic international traveller from the States, explained to me that he thought having a dog would limit his Independence because 'it would be like travelling with a clingy three-year-old child'.

I can understand why Guide Dogs for the Blind are the most successful UK Disability charity. Their Labradors are unfailingly photogenic and it feels both easy and good to give money to such an aesthetically pleasing cause. And on one level I don't blame them for using whatever material they can to get money for their cause. But if their mission really is about improving the lives of the blind and partially sighted, perhaps they need to think again about the way they represent blindness. But in the UK, generations of children have grown up thinking of blindness as a tragic condition which only a beautiful dog can remedy.

Confessions of a Blind Mother

Last week I did something I'd never dared do before. I took my children to London on my own. This might not seem like a big deal. Other mothers I know are always taking their kids out on days out, to parties, on shopping trips or to the swimming pool. But I have always found being alone with my children in public stressful and difficult. I do not have difficult children. Zac (age 6) is funny and affectionate. He likes to stay close in public and more often than not chooses to hold my hand. Raffy (age 8) is exuberant and full of energy. He is never still and always runs ahead, darting in and out of passers-by and jumping on and off walls. My problem is that I find it impossible to watch them both all the time. Raffy doesn't have to run very far before he is out of my sight and even Zac can vanish from view by taking a few steps backwards or to one side. They always look a little blurry and I can't distinguish them from other children of the same size and shape when they are more than a few metres from me.

As soon as they were old enough to walk I became terrified of losing them. Even the walk to school was frightening as they would run ahead and I'd worry that me not being able to see them meant that something dreadful had already happened to them.
Now that I have started thinking about my blindness in a more positive and proactive way, I have realised that I was approaching motherhood from a sighted perspective, obsessing about keeping my children in sight because that was what the sighted world expected parents to do. After the Madeleine McCann case, which happened when Raffy was 2, I became even more worried that something might happen to my children if I couldn't see them. (Of course I was also particularly interested in this case because Madeleine has coloboma like me.) I used to worry that I was a bad mother because I couldn't always see what my children were doing. But now I know that I am just a different kind of mother.

I have developed other ways of keeping track of them. When we are in crowded or dimly lit areas I get them to help me hold my cane and let them help me swipe it from side to side. We have even created a game where they have to try jumping over the end of the cane without touching it. This keeps them close whilst giving them some freedom. It also makes blindness fun. If I lose sight of Raffy I simply call his name. He has got used to answering and I use this sound either as reassurance or as a way of finding him again.  As he becomes more independent I let him go off on his own (within reason) as long as he tells me where he is going and knows where to find me again. We have both got very good at fixing meeting places and returning to them. This has helped us build a trusting relationship.  Zac has got used to describing things to me and sometimes plays at being my (talking) guide dog. He points out steps, kerbs and stray dustbins and he will always tell me where Raffy is when I ask him. Both boys are great at alerting me to approaching friends and acquaintances. My face blindness means I cannot even recognise good friends in unexpected contexts. But the boys can and they'll say, 'Look, Mum, here's Carolin' just as she stops to say hello.

I have always been open about my blindness with my children and this has helped me be more honest with myself. I wanted them to understand what I can and cannot see, why I do not drive and why it is important that they answer me when I call to them. But mostly I wanted to make sure that my blindness was not a taboo topic of conversation. They must not be ashamed of my blindness or think of it in a negative way. Sure, it is mildly annoying that sometimes we have to undertake laborious trips on public transport which would have been quick and easy in the car, but it is not a tragedy. I think I have done a pretty good job of convincing them that my blindness is not a bad thing. There is no denying that it makes me different from most mums, but it has also shown them that sight is not the only way of navigating the world.

(And as for our trip to London: we had a great time. No one ran off or got lost and we all loved the Churchill War Rooms. I especially liked the audio guide whilst the boys enjoyed the huge interactive displays.)