Changing the Face of Disfigurement

Yesterday I saw a cinema advert that will stay with me longer than the film I watched afterwards. A man with a badly scarred face is sitting in a car. Outside it is dark and rainy. He is watching a house. A pretty woman enters the house. She is alone. She goes upstairs and starts cooking dinner. The man in the car can see her through the window. She doesn't know he is watching her. The music she is listening to on the radio is the same music that the man is listening to in the car. She pours herself a glass of red wine. The sound of the door knocker startles her. She goes downstairs and opens the door cautiously. She sees the man with the badly scarred face and stares at him in horror. If you want to see what happens next, watch the advert here.

What did you think was going to happen next? This ad is part of campaign for face equality on film. it is fighting against the ease with which the film industry uses facial disfigurement to represent evil. When a character with a disfigured face appears on screen, he or she is almost always a baddie. Cinema is incredibly lazy in the ways  it uses bodily appearance. Anything which departs from the perfect Hollywood body generally becomes part of the character's essence. But facial disfigurement is only skin deep: it doesn't change the way a person loves, laughs or thinks. How can the facially disfigured expect to be treated equally in the street, at school,  at work, or on the beach when there are no positive images of disfigurement at the cinema?

As the Face Equality on Film website points out: "these long-held and inaccurate beliefs are completely at odds with the reality for most people with disfigurements - who are lawyers, teachers, comedians, DIY lovers, parents, feisty teenagers, doting grandparents. They worry about their children, love cooking programmes, have affairs, worry about the rent, dye their hair, hate commuting - just as other characters do who are portrayed on the big screen."

This advert was shown at the cinema. But perhaps it should also be shown behind the scenes. For it is only when casting directors, producers and writers stop obsessing over stereotypical ideas of beauty that the cinema-going public will have the chance to see disfigurement presented in a more positive light.

The Paradox of Bravery

Yesterday I did something I have wanted to do for a long time: I went to tree-top adventure "Go-Ape". In Delamere Forest. This involves climbing 12 metres up a tree on a rope ladder and then crossing various bridges made of decidedly wobbly bits of rope and wood. My favourite crossing was the "stirrups", where you place one foot at a time in little rope loops: This was rated "extreme" and not everyone in my group was brave enough to try it.

I have always been a dare devil. As a child, my favourite things were gymnastics, trampolining and climbing trees. I still love roller and ice skating and at a recent children's party I might well have been the most confident mum on the ice.

I can't see well enough to see people's expressions but I expect they were looking at me with a mixture of alarm and astonishment. How can someone who uses a white cane to walk to school possibly manage to launch herself off a platform into a cargo net or go zooming round an ice-rink?

Conventional wisdom says that you need bravery to tackle adrenaline fuelled activities like "Go Ape". And we have all heard the myth that the blind who get on with life show courage in abundance. So does that mean I am doubly brave?

Actually it doesn't. I find activities like tree-top climbing and ice-skating easy precisely because I don't use my sight to do them. They are about balance, touch and instinct. Sight just doesn't come in to it.

Thirty years ago I went to a birthday party at Lightwater Valley. The main attraction at this theme park was the "death slide": a sheer and highly polished wooden drop which you had to launch yourself off. All my sighted friends were terrified of it and not many of them were brave enough to try it. But I happily flung myself off the edge over and over again. One friend was so cross with my annoyingly smug exuberance that she pointed out that it was easy for me because I couldn't see how high up we were. I remember that she got into a LOT of trouble for saying that. My eyes were a taboo subject back then and no one was allowed to mention them.

But it turns out that my friend was right. I am not scared of heights because I have absolutely no idea how high I am. As long as I have something to hold on to I really don't mind where I am. I love the sensation of falling, swinging or bouncing precisely because this is something I can do as well as -
If not better - than my sighted peers. It gives me a sense of power, confidence and liberation which I don't often experience in the sighted world.

Would you rather be blind or fat?

A recent US survey revealed that 1 in 6 women would rather be blind than fat. The more I think about this statistic, the more I wonder what it is actually saying.

At first I was outraged by the superficiality of these women: how dared they compare the massive hassle of blindness with the trivial issue of body shape? But of course it is much more complicated than that: obesity has health and well-being implications that blindness does not; but, on the other hand, obesity can often be treated where blindness usually can't. Because people think that obesity can be self-imposed, the obese are often labelled as greedy, compulsive, lacking in self-control, lazy. In contrast, because society sees blindness as a tragedy which happens to someone through no fault of her own, the blind are seen as victims and are pitied rather than criticised. None of these labels are accurate or helpful, but this is the way these conditions are usually seen.

As I thought more about this tricky statistic, I found myself agreeing with this blog which argues very convincingly that the assumption behind this response is that the women questioned see blindness as a condition which although tragic, would have a less negative impact on their body-image than obesity. Presumably these women are imagining themselves as one of those stunningly beautiful blind women you find in films. They probably don't know any actual blind people. If they did they would know that blindness doesn't necessarily lead to beauty: indeed being blind can cause feelings of self-hate very similar to those provoked by obesity. (Or maybe they were wrongly thinking that blind people doesn't care about their body-image because they can't see themselves, and are thus immune to low self-esteem issues...)

Of course there is a different way of reading these statistics. What if these women are right? What if being blind is preferable to being fat? Not because of something as superficial as appearance, but because blindness is an exciting and interesting way of being in the world. Without my blindness I would not have discovered erotic braille, experienced the kindness of strangers or embarked on my current research project.  Sure, blindness has its inconveniences, but it is certainly not a tragedy.

After much thought (and discussion with my statistic-cynic husband) I have decided that the biggest problem with this survey is that it happened in the first place. The very fact of asking such idiotic questions posits both blindness and obesity as negatives. This survey perpetuates the assumption that a woman's value comes from the way she is seen, and consequently the way she sees herself. What about paying a little less attention to appearance and a lot more to what is going on in the inside?

Tina Nash

Literature has taught us to think of intentional blinding as an atrocious  punishment, a fate worse than death. Samson had his eyes gouged out by the Philistines, Gloucester's eyes are removed in punishment in Shakespeare's King Lear and perhaps most famously of all, Oedipus scratches out his own eyes when he realises the extent of his guilt. In her wonderfully clever Sight Unseen (Yale University Press, 1999, pp. 68-73) Georgina Kleege lists more modern books, from Bronte's Jane Eyre to Shreve's Eden Close which associate blinding with punishment. Kleege argues that this persistent association contributes to the negativity still associated with blindness.

She might be right. Given the unremitting negativity associated with the always vindictive act of intentional blinding, it is not surprising that Tina Nash, who was blinded by her boyfriend last year, said she felt 'buried alive' and 'like a ghost' after the attack. Tina's choice of words is revealing. For her, as for the characters Kleege describes,  life without sight was a kind of living death.

But unlike the victims of blinding found in literature, Tina has not succumbed to these associations of blindness and death. This interview describes how Tina now feels. She describes herself as 'surviving' because she has decided to get on with her life, to not let her blindness stop her from bringing up her children. It is significant that Tina rejects the epithets of 'courageous' and 'amazing' that the interviewer dangles in front of her. By doing so, Tina does much to demonstrate that blindness in itself is not a tragedy: rather, it is the sighted world's view of blindness which might be described as 'disabling'. If I described Tina as 'an inspiration' I would be undermining my own argument by buying into the 'disability as tragedy to be overcome' mindset. So I'll just say that hearing her voice on radio 4 this morning made me glad to know that she is there.

UPDATE: August 28th 2012: Click here to read an angry response to this post and my response.

Seeing Electricity: Science Fiction or Science Fact?

 It is tempting to believe in the old adage that 'seeing is believing' and that the way the sighted see the world is the best, and only, way of seeing it. That the world is made up only of what we can see of it. This is certainly the approach of most opticians who try and use artificial means such as glasses and contact lenses to mimic the workings of the eye, thus helping the visually impaired to see as well as their perfectly sighted peers.


But what if there are better ways of seeing the world? What if the model offered by the normal human eye is not the most desirable one? Why don't opticians offer us different kinds of sight rather than always striving to replace what we are lacking with an artificial reproduction of it?


 At first this seems like the stuff of science-fiction. In fact in his 1923 novella L'Homme truqué (The Phony Man), French writer Maurice Renard describes what happens when electroscopes are implanted into a blind man's eyes. This operation gives the novel's hero Jean an initially alien, and highly perceptive view of the world. After his operation the first thing he sees is a hideously misshapen monster standing before him. It is only when this monster speaks that he realises that this is in fact his (human) doctor: the pulsating nerves, electrical impulses and brain waves that Jean can see are no less part of the human body than the skin and bones we are used to seeing. They seem alien to Jean because he is not used to looking at the body in this way. But once he becomes accustomed to this new way of seeing, he can relate to the world in a much more detailed way than his normally sighted friends.  He can see electrical impulses inside the human body, electricity flowing far underground, lights shining behind walls or energy fields several miles away. His ability to see through solid materials and across vast distances means that it is impossible to hide anything from him. The concept of secrecy loses all meaning as the plot develops, just as day and night and light and dark lose all signification for him for what we call darkness has no effect on his vision.  As the novel progresses, the reader is obliged to reconsider the very way we think in order to take into account Jean's new way of seeing. Traditional novelistic twists involving concealment, mistaken identity or suspense become impossible in a world where the protagonist can see inside and through people, buildings, the earth.


I read this story a couple of weeks ago and was enchanted to discover that this way of seeing is not limited to science fiction. On this morning's Start the Week, 'The Digital Future' (at 23 minutes), Anab Jain from futurology company Superflux describes exactly the kind of sight Renard evoked in 1923. She is developing a kind of  'prosthetic vision' whereby the blind can have a virus injected into the back of their eyes which would enable them to see electromagnetic spectrums that are not visible to normally sighted people. Apparently, the blind community has not been overly positive about Jain's project. But surely this kind of 'supersight' is the perfect way of rethinking the myths about the predominance of the ocular. I hope Jain's project succeeds. I hope it helps people see in a new way. But most of all I hope it reminds the sighted that their highly prized way of seeing the world is neither as powerful, nor as necessary to human happiness as opticians would like to have us believe.

Meeting Blind

I am co-organising an international conference on the history of blindness and the blind in Paris in June 2013. As well as myself in Oxford or Egham, there are members of the organising committee in San Francisco, Catania, Mulhouse and Paris. Meetings take place in Paris with far-flung members joining in via Skype conference calling. Yesterday it was my turn to host the conference call. This involved creating a group of contacts and calling them all at the same time. It worked like clockwork except for the fact that without Skype Premium (which no-one wants to pay for) the conversations are voice-only rather than video. It seems particularly fitting that the organising committee of a conference on blindness needs to rely on sound rather than sight to conduct its business.

Taking part in a meeting 'in the dark' is much easier and more fun than I was expecting. The hardest thing is remembering to follow a few simple rules such as asking people for their opinions by name, and expressing agreement or dissent verbally rather than through gesture. No amount of nodding or head-shaking will convince colleagues who can't see you of your opinion. At first I worried about how I would know who was speaking. But it soon became clear that everyone has their own very distinctive voice. Being forced to pay attention only to what I could hear meant that the ways in which people said things became just as important as the words themselves. I found myself listening much more intently than I usually do in meetings and I'm sure I can remember more of what was said and by whom than at several sighted meetings I've been at recently.

But the best thing about that meeting was that I knew no-one could see me. I ate an orange, tidied my desk and sent a few routine e-mails whilst taking part in the discussion. The amount of time I spend listening to radio four whilst washing up, making supper and tidying the house stood me in good stead: it turns out that I am an accomplished aural multi-tasker. This was one of the most productive meetings I have attended, in more ways than one.

Until now, I have shied away from video-calling and didn't really understand what all the fuss was about. I didn't like seeing myself on screen and resented the fact that the other person could see straight into my home or office. But video-conferencing without video is a whole different animal. Skype's policy of charging for visual video-conferencing suggests that they, and presumably people in general, think that it is better to have sight than not to have it. But I disagree. I think meetings 'in the dark' are more relaxed, more productive and more stimulating. They also have the advantage of showing the sighted population that sight is not indispensable: indeed sometimes (during my rather messy snack for example), the lack of sight is in fact a very good thing.