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.

David Bolt; The Metanarrative of Blindness (2014)

The image shows a hardback copy of David Bolt's The Metanarrative of Blindness: 

A Re-Reading of Twentieth-Century Anglophone Literature 

(Ann Arbor: Michigan U.P., 2014)

There is nothing quite like the combination of excitement and fear an academic experiences when they come across a book which is closely related to their current research. This is exactly how I felt when I heard about David Bolt's new book, The Metanarrative of Blindness. I was excited by the potential for new discoveries, discussions and connections which this book would provide, yet I was terrified that David's work would somehow duplicate or pre-empt what I am trying to say.

I am pleased to say that by the time I finished reading the book, my fears had vanished and my excitement had more than doubled. This is a fascinating and readable exploration of how a range of fictional and autobiographical texts represent ‘blindness’ and ‘the blind’. Its originality lies not so much in David’s discussions of the texts themselves, but more in his argument that fictional representations of blindness have created a set of myths and stereotypes of blindness which dictate how society treats the blind. Indeed David even makes the important point that blind people themselves have also been unwittingly influenced by such images. David’s book is different from much traditional literary criticism because it constantly compares his own experience of being blind with fictional representations of blindness in order to show the gap between reality and fiction.

Aside from this overarching argument, there are many useful elements in the book and I will certainly be using it with students in my new undergraduate course ‘Blindness and Vision in French Culture’ which I am teaching at Royal Holloway from September .The Introduction provides an excellent summary of the major trends and tensions in Disability Studies in general, with references to authorities including Goffmann, Garland-Thomson, McRuer, Davis, Mitchell and Snyder, and Chapter One explores the politics of blindness in particular. Here, David very carefully explains his somewhat controversial choice of terminology. Unlike many blind activists and scholars, including myself, David rejects the terms ‘the blind’ and ‘blind people’, preferring to use ‘those of us who have or do not have a visual impairment’. There are good reasons for him to do this, not least because his decision highlights the very problems of terminology he is trying to avoid, but I find his choice of words clumsy and at first I was frustrated by how much it disrupted the flow of both his prose and his arguments. Like Georgina Kleege in Sight Unseen, I prefer to proudly reclaim terms like ‘blind’ and ‘partially blind’ as celebrations of a state of sightlessness usually considered negative. But David’s explanation of the reasons behind his choice do make sense. In fact they do a great job of revealing the advantages and disadvantages of the medical, individual and radical social models of disability, the potential pitfalls (or possibilities) of political correctness and the power of even apparently neutral language to influence and (mis)inform. Like myself, David is speaking at the Society of Disability Studies conference in Minneapolis next month: I'm looking forward to discussing his choice of terminology with him and others at the event.

In the rest of the book, David explains how three interrelated neologisms - ‘ocularnormativsm’, ‘ocularcentrism’ and ‘opthalmocentrism’ - both belong to and persist in creating a 'metanarrative of blindness', in other words, 'the story in relation to which those of us who have visual impairments often find ourselves defined, an overriding narrative that seems to displace agency' (p. 10). David's analysis of a wide range of texts shows the persistent presence of a number of myths of blindness which I have also found in some of my nineteenth-century French texts. The ‘seeing-knowing metaphor’ (p. 18), the ‘blindness-darkness synonymy’ (p. 21) and the odd idea that people are either fully blind or fully sighted (pp. 69-70), are particularly widespread. In Chapter Two he shows how the use of labels such as ‘the blind man’ and ‘the blind girl’, creates a belief in blindness-as-difference which sets blind characters apart from the (implicitly sighted) reader. Chapters Three and Four both deal with a range of misconceptions surrounding blindness and sexuality. One of the most interesting arguments in Chapter Three is the discussion of how the recurrent infantilisation of blind characters frequently rests on the misguided assumption that independence is more valuable than dependency. By challenging the independence-dependency hierarchical binary which underpins traditional notions of rehabilitation, lifestyle and progress, David is able to criticise dominant medical and social discourses of disability. This is just one example of how readings of fictional representations of disability can help to problematise current ways of thinking. This is something which I hope my own analyses of blindness in fiction have also been doing.

In the following chapter, David criticises positive stereotyping by showing how 'more than being inaccurate, cultural representations of extraordinary senses serve, at best, to render magical the talent and achievements of people who have visual impairments and, at worst, to justify the ascription of various animal-like characteristics' (p. 67). Chapter Five is an insightful survey of blindness’s association with contagion in science-fiction writing (including readings of key works like H. G. Wells' 'The Country of the Blind', John Wyndham's The Day of the Triffids and José Saramago's Blindness) in which David challenges the recent tendency to read references to successful blind characters as a celebration of disability. Instead he argues that stories featuring blind communities tend to emphasise the differences between the blind and the sighted which in turn suggest that ‘the blind' are somehow inherently different from the sighted. Chapter Six uses the work of French philosopher Michel Foucault to criticise the hierarchical binary relationship between the sighted gazer and the blind object of the gaze whilst Chapter Seven calls the blindness-as-tragedy myth into question.

David’s discussion of a wide range of twentieth-century texts represents an impressive survey of representations of blindness and the blind. I find him most convincing when he compares his discussions of fictional depictions with the lived experience of the blind and the partially blind: his use of examples from his own life, as well as extracts from the autobiographical writings of Georgina Kleege, Stephen Kuusisto and John Hull is particularly informative and should teach sighted readers much about their own misconceptions of blindness. This emphasis on lived experience is important because it demonstrates that the 'metanarrative of blindness' occurs in society as well as – or perhaps even more so than - in fictional representations. David is an accomplished social commentator who uses evidence from twentieth-century fiction to demonstrate how 'the blind' are perceived in modern society.

The main problem I have with David’s book does not in fact have anything to do with blindness as such and it feels a little churlish to mention it here, particularly as it is related to my (in fact unfounded) worries about overlap with my own work. I find the subtitle of the book, ‘A Re-reading of Twentieth-Century Anglophone Texts’ misleading, perhaps even insulting. Whilst the majority of his texts were written in English, David also pays sustained attention to several French authors – Roland Barthes, Georges Perec, Jean-Paul Sartre, André Gide and Jacques Derrida - whose works were neither originally written nor published in English. I am worried by this refusal to acknowledge the linguistic and cultural identities of these texts: not only does this negate the huge influence that French literature and culture has had on the history of representations of blindness, it also reflects a wider tendency amongst anglophone academics, publishers and readers to ‘claim’ such texts for the dominant Anglo-American canon when it suits them to do so. I am pretty sure that my French friends and colleagues would be outraged to see French classics like La symphonie pastorale and Histoire de l’oeil described as ‘anglophone’!

This niggle notwithstanding, this book is a crucial contribution to 'Blindness Studies' and comes very highly recommended.

Zina Weygand receives the Legion of Honour

Zina Weygand proudly sporting her decoration during her acceptance speech

I first met prominent historian and doyenne of 'Blind Studies', Zina Weygand in February 2012 and I was so impressed by our encounter that I wrote about it in one of my earliest blog posts here. Since that memorable meeting, I have spent many hours with Zina: we worked closely on the organisation of the International Conference on the History of Blindness and the Blind and enjoy catching up over tea and cake whenever I visit Paris.

Last week I was honoured and delighted to be invited to the ceremony in which Zina was awarded the Ordre de la Legion d'honneur. This honour, the highest that can be awarded to a French citizen by the French Republic, is hugely prestigious, and was bestowed on Zina by Jean-Louis Chambon, prefet honoraire, for the illuminating and ground-breaking work she has done to bring the history of blindness and the blind to international prominence. 

As well as being a renowned academic, Zina is also, and above all, a gifted people-person. She loves putting researchers in touch with each other and has built up an impressive network of contacts across the globe: indeed she has provided me with many invaluable contacts in the relatively short time I've known her. Everyone I talked to at the ceremony refereed to her generosity of spirit, the genuine pleasure she gains from meeting people working on blindness and the blind, and her unfailing ability to make connections, create projects, initiate and maintain lasting friendships and energise those around her. 

There is no doubt that my work on blindness would have been impossible without Zina's advice, guidance and support. The ceremony on 29 April was a moving and fitting tribute to her extraordinary life-work.