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Tuesday, 27 May 2014

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.



4 comments:

  1. Would you distinguish between 'Children in Need'-type charities and those supporting medical research, such as Fight for Sight? It's important to get away from the stereotypical association of blindness and the 'tragic, but that's not to say that work to prevent it / investigate its causes isn't vital? And the public sector isn't going to stump up the cash to fund expensive research into non-life-threatening conditions such as glaucoma, say.

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  2. Thanks for your comment Jon: my problem with charities like 'Fight for Sight' and 'Fighting Blindness' is that they posit blindness as an enemy to be defeated and, like the 'medical model' of disability generally, do not question the assumption that cure is a Good Thing. I'd prefer to see blindness as a friend or ally. As you say, medical research has its place but an uncritical effort to eliminate blindness because it is not the norm feels to me like an implicit suggestion that blind people would be better off sighted and I can't agree with that.

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  3. Thank you, Hannah, for linking to my blog post! :)

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  4. It is a pleasure Cara: I also refer to it briefly in my paper for SDS. Really looking forward to meeting you in Minneapolis. :)

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