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 Taboo of Blindness

Taboo: Corporeal Secrets in Nineteenth Century France

(Oxford: Legenda, 2013)

(Cover image courtesy of the Wellcome Library, London)

When I was a child, blindness was a taboo subject in our house. We never mentioned the word if we could help it and I remember a feeling of icy awkwardness descending if we ever encountered references to blindness or the blind on television. With the exception of The Little House on the Prairie I don't remember being read any books with blind characters in them and I suspect that my mum would rather not have read me the blindness episodes in Laura Ingalls Wilder's books. When we had to talk about what I could and could not see, I referred simply to 'my eyes'. When asked, I might say that I was 'half-blind' or 'registered blind' (in fact I was quite proud of being 'different' or 'special' sometimes) but I did not see myself as 'blind'. This was why I would not carry a white cane and hated 'mobility training' with a vengeance.

It was this refusal, both by me and by those around me, to address my blindness directly which led to my ferocious desire to 'pass' as a sighted person and deny my blind identity. The taboo status of 'blindness' made it a negative notion which I could not relate to my own reality. But it was also this negativity which surrounded 'blindness', a negativity learnt from prevailing societal attitudes to it, which rendered it taboo in the first place. Rather than admitting that I was blind, it felt easier to ignore it and hope others would do the same. It is only in the last eighteen months or so that I have been able to happily embrace my blind identity, an identity which now sits in a sometimes easy, sometimes conflictual, but always interesting relationship with my sighted self.

When I started thinking about how taboo aspects of bodily reality such as female sexual desire, illness, sado-masochism, disability, impotence and incest are represented in nineteenth-century French texts, I had no idea that this project would lead to my own personal interrogation of the taboo on blindness. But in my book, Taboo: Corporeal Secrets in Nineteenth-Century France, published this month, I demonstrate that it is only by engaging with potentially difficult subjects that we can rid them of the negativity which surrounds them. As I argue in my Conclusion:  

'The taboo bodies which this study has uncovered are crucially important because they invite us to look again at our own misconceptions of what makes the body normal, beautiful, or perfect. Like the social model of disability, they urge us to rethink our understanding of how bodies relate to the world. [...] Exposure to the taboo is a necessary, though not always a comfortable, part of becoming an engaged and insightful reader. By discovering the form and function of the taboo bodies hidden at the text's heart, the reader is finally free to question his or her own misconceptions and thus begin to relate to bodies of any kind in new and enlightened ways.'

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.)