Shades of Blindness

I think it is fair to say that my cataract operations were successful. For the first time in three years I can read print, the world is so bright and colourful it feels like I am on the set of The Wizard of Oz, and all my friends and colleagues look about twenty years older. But whilst my sight is better than it was when I was an undergraduate student, I am still legally blind. I feel like I can see again but it turns out I still can't read the eye chart, see detail close up or at a distance or recognise people. Navigating in crowded or unfamiliar places is still tricky and stressful and I still need my reading glasses, my telescope and my white cane. And now I also need shades. I used to hate wearing sun glasses. By blocking out what little light made it into my eyes, they made me even blinder than ever. But now I can't go out without them. My new cataract-less eyes are amazingly sensitive to light. Even with my shades, I can see colours more brightly than I could before. But wearing shades has a drawback I hadn't expected. By hiding my eyes, the shades also hide my blindness. And because my eyes look different they work a little bit like my white cane - they tell people that because my eyes do not look the same as theirs, I might not see the same as them. So when I go out with my shades but without my white cane I look completely sighted. And this can cause problems. Last weekend I went to a music festival with my family. We had a lovely time camping, eating bacon sandwiches and drinking wine (not necessarily all at the same time). But when I went down to the front to watch a band (without my white cane), a rather irate lady accused me of pushing in. I honestly had not meant to push in front of her and was genuinely shocked at her anger. I was also upset because I realised that I do not in fact see as well as I thought. I still miss visual cues (and clues) and without my white cane this makes me look at best clumsy, and at worse rude. So even though my cane is heavy and cumbersome, and even though my new sight makes me wonder if I am really as blind as the medics' measurements suggest, I will still be using my cane and still proudly defining myself as 'partially blind'.

But What Can You Actually See?

What I see on a sunny day

Sighted people are often curious about what I can and cannot see. I am not completely blind but I am not completely sighted either. With my reading glasses I can read very small print but I cannot tell the difference between buses and lorries after dark. What I see varies constantly: it depends on whether I am somewhere familiar or foreign, on levels of light and dark, on the weather, on how tired I am, on how much reading I've been doing. This is unsettling for those who like to put people into categories. One day I am pretty much blind; the next day I am mostly sighted. This is confusing, but it also makes my life exciting. I never quite know what I'll be seeing from one day to the next.

Today is the kind of crisp, clear, cold November day that I used to love. The kind of day when colours seem extra vibrant and leaves crunch underfoot. I used to love days like this because the extra light in the air seemed to make my vision sharper. It was on days like this that I felt most sighted. But in the last two years, my attitude to crisp autumn days has changed. At the moment my underlying eye condition, coloboma, which has been relatively stable all my life, is being complicated by cataracts in both my eyes. With eyes of standard shape and size, the removal of cataracts is a routine operation. But this operation becomes highly complicated and risky with eyes like mine. So I am waiting until the cataracts have taken away all my sight before I have the operation. That way, if things don't go as planned, I won't have any vision left to risk.

Having cataracts does very odd things to my vision. Everything now has a slightly yellow tinge and I can't tell the difference between black, blue, purple and grey as well as I used to. Instead of entering my eyes, light bounces back off them as if they were made of shiny metal. The resulting dazzle and glare fills my eyes with whiteness and hides everything else from view. Cars, trees, pavements and people vanish into a bright white mist. But as soon as I step into shadow everything reappears, paler and more misty than it used to be but still mostly recognisable.

Dark winter nights are just as much of a challenge as bright winter days. I am at my blindest after dark. My eyes might look like cat's eyes, but they have none of a cat's night vision. After dark my problems with dazzle and glare are compounded by the halos and starbursts which surround any light source. These effects, illustrated here, convert my nighttime world into a kind of other-worldly psychedelic wonderland.  On balance I rather like the disorientating effects of cataract vision. Now that I have lots of practical solutions for doing what I want to do I like being living proof of the subjectivity of vision.

Are You Coping?

Today I went to the Oxford Eye Hospital for my annual check up. Although my underlying eye condition - coloboma - has been stable since I was born, I have cataracts growing in both eyes which are steadily reducing my already low vision. The size of the Eye Hospital means that I rarely encounter the same doctor twice and today I was seen by yet another ophthalmologist whom I had never met. He explained what I already know: if my eyes were the same shape and size as everyone else's, the cataracts would have been unproblematically removed by now. But the nature of my eyes turns this routine operation into a risky and complicated procedure which he does not want to perform unless he absolutely has to.

This consultant has never met me and he only has a couple of minutes to flick through my notes. These tell him a lot about my eyes but not very much about me as a person. Perhaps this is why, after the eye exam is over, he asks me if I am 'coping'. At first I do not hear him properly and ask him to repeat himself: 'Are you copying with your gradual sight loss?' he asks.

I reassure him that I am 'coping' fine and our interview is over. It is only as I drink my traditional post-appointment latte that I realise that his question has left me feeling upset and a little angry. 'Coping' is not a neutral word: it has very specific connotations and these are always negative. There is a suggestion of 'only just' or 'barely'; 'hardly' or 'just about'. It is the absolute minimum, the lowest common denominator, the barely satisfactory. 'Coping' is a state which is just past 'struggling', on a par with 'surviving' and not quite 'managing'. There is nothing aspirational, optimistic or ambitious about 'coping'. It is a patronising, condescending, word because it assumes that this mediocrity, this unremarkability is enough for me. As long as I am 'coping', my consultant is happy. I think it is his lack of ambition for me, for any of his patients, which upsets me. I wish I had explained this to him. I wish I had said, 'no, I am not 'coping', I am thriving, flourishing, celebrating. I am writing, travelling, living.

It may seem a little extreme to read so much into only one word. (Of course close-reading is what I do best). But my work on representations of disability reveals that societal attitudes are both shaped and expressed through language. The repeated use of words like 'coping' by health professionals will teach society that this is all the disabled can expect. And this reinforces the already widespread view that disability is a life-limiting condition which must be 'suffered', 'endured' or perhaps even  'overcome'.

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.)

The Ethics of the 'Tragedy' Approach

Since I started thinking critically about blindness, I have repeatedly argued in this blog against the widely held view that blindness, or indeed any disability, is a tragedy. I have become interested in the 'personal non-tragedy' approach to disability and in March 2013 I am organising a study day to explore issues around tragedy and disability.

I thought that seeing disability as a tragedy perpetuated society's view of the disabled (and thus disabled people's view of themselves) as inferior, somehow lesser people. In a post on Tina Nash - the woman ferociously blinded by her boyfriend Shane Jenkin in 2011 -  I noted how Tina herself resisted the media's attempts to assign the traditional disability labels of 'brave' and 'courageous' to her. I was trying to argue that this resistance demonstrates that disability is not inherently tragic and that Tina's refusal to see herself as a victim was empowering not just for her but also for other disabled people. 

I recently received a very angry response to my Tina Nash post from Maria Brody. Maria's comments, which I found shocking and hurtful, accused me of being more immoral, more evil, than Tina's attacker. Maria's argument is that by refusing to see disability as a tragedy, I undermine the severity of Jenkin's crime and make disabled people feel guilty for wanting to be 'whole' again. Her comments, as well as demonstrating the alarming pervasiveness of myths of blindness and disability amongst the general public, raise important questions about the ethics of my 'personal non-ttragedy' approach. Maria sent me her comments by e-mail and I include them in full below in italics, with my responses in bold.

You do realize that it is a mindset such as the one you describe that contributes to torturers like Shane Jenkin getting only six years in prison? After which he can happily go out again and pluck out someone else's eyes. Creating more blindness. More tragedy, yes.
I think your post is a massive insult to victims of violence.

I did not intend to insult anyone nor to belittle Jenkin's actions. He subjected Tina to a brutal and violent assault and should be punished for it. How Tina is living with her blindness is a completely separate issue. She is living her life in a way which shows that blindness is not a tragedy and does not signal the end of life as we know it. Are you suggesting that she should give up on her life, her children and her self-esteem so that perpetrators of violence receive longer sentences? Surely this would signify a further triumph for her torturer.

Rape is probably also best responded to by "laying back and enjoying it", according to your morals?

Rape, like assault, is a violent act inflicted on somebody against their will. As such it is reprehensible and wrong. My post does not suggest that Tina enjoyed her attack. It argues that once blinded, she adopted a positive attitude to her new way of being in the world.

It's all in the mind, there's no difference really between good or bad, it's the victim's own fault if she thinks blindness is a tragedy, if only she'll stop constructing herself as a victim she'll be just fine.

 

I do not blame anyone for thinking that blindness is a tragedy. After all we are constantly bombarded by this message in language, in the media, in film and in literature. My post on David Rathband's blinding reminds us that feelings of mourning and depression are extremely common when affected by sudden sight loss. But might blindness feel less tragic if Western civilisation stopped fetishizing the eyes, vision and the sense of sight?

Oh yeah, does it really make a difference whether you see your loved one's faces or not, or a sunset, or a tree, or the sky?

 

You are asking the wrong person. I really don't think it does make a difference. But then I didn't lose my sight suddenly like Tina and David so there are lots of things that I've never seen and never missed seeing.  My life doesn't feel empty because I've never seen them. Unlike most people, I've never seen sight as the most important of the senses. I use touch and smell extensively in my contact with the world.  

Or permanent darkness.

All the same, of course!

"Black is just another color, full of possibilities."

"Rape is just another form of sex, stop calling it a problem."

Why these parallels between rape and blindness? How do you think this makes blind people feel? 

Etc.

No.

You are the one acting blindly here,

 

This is an interesting turn of phrase. Do you see how even the metaphoric language we use constantly tells us that blindness is negative? 

 

 denying that reality can sometimes be horrific. And that evil does exist.

I am not denying that Tina suffered a violent and painful attack. But I am saying that she is refusing to let Jenkin's act ruin her life.

If you believe you are benefitting disabled people, and victims of violence, by denying their feelings and the hardships of their reality, think again.

I have had first-hand experience of the negative feelings having a disability can cause. Remember that I have been living with my blindness for 39 years. But I know now that these feelings are the product of society's negativisation of disability. This in turn is a result of an occulocentric society obsessed with conventional notions of beauty and perfection and with sight, vision and the eyes. Having a disability is often annoying, inconvenient, time-consuming and expensive. But it is not a tragedy.

Please.

Look again at what you wrote:

"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."

The last sentence must, judging from the preceding argumentation, mean: "hearing her voice on radio 4 this morning made me glad to know she is blind."

The last sentence means that I am glad that she is handling her blindness in a refreshingly positive way.

Really? That is disgusting.

 

And if this was not what you meant, what is it then making you so glad? Tina was "there" too when she had eyes, remember? - But that did not give you any thrill, did it?

True. But only because I had never heard of her before her blinding. I am not glad that Tina is blind. I am glad that she is showing other people who lose their sight suddenly that life can go on.

The real significance of Tina's rejection of the description "brave" is exactly what she is saying: She is just surviving. Praising her for bravery would in a way absolve the assailant who tortured her, making the assault "meaningful" or "OK", "not so bad after all". And Tina wants, of course, to hold on to the truth: to keep insisting that this was wrong, that this was entirely horrific and should not have happened to anyone. And that we should do our utmost to prevent similar evils from happening. To deny that is as great an insult as what he did to her.

I think we are saying the same thing here. I agree that what Jenkin did was horrific. But it would have been just as horrific - no more, no less -  if he had cut off her hands, her ears or her legs. By saying that his crime is worse because it led to blindness you are fetishizing the sense of sight and thus perpetuating the myth that says that gouging out the eyes is the most horrific punishment. Jenkin went for Tina's eyes because of society's fetishization of them. Without this privileging of the sense of sight, he might have turned his attention somewhere else.   

You, in my view, are trying to do to her mind, and everyone else's minds, what he did to her physically.

No, I am trying to do the opposite. I am trying to ask people to think again about blindness and the sighted world's understanding of it. I am trying to metaphorically open people's eyes.

One is doing disabled people no favor by denying reality and placing upon them the addition burden of guilt for still feeling deep down that they would rather be whole.

I agree. By constantly telling disabled people that they are somehow less than whole, society makes them yearn to be whole again. This creates a struggle between acceptance and self-loathing which can lead to depression or even suicide. But the burden of guilt for this lies not with disabled people but with those who constantly reinforce the 'disability as tragedy' myth, thus encouraging self-pity and immobilising the disabled in a stagnant victim culture.

It is one thing to keep a positive attitude to life in difficult circumstances - and an entirely different thing to blatantly lie about the difference between ability and disability.

I am not lying. I am questioning received wisdom and trying to go beyond superficial appearances.  

True, one can choose to use whatever one has to the best of one's abilities, and that is an inspiration to us all. But that does not mean that being disabled is not a tragedy.

Nor does it mean that it is a tragedy.

Do not deny Tina her own language of ghostliness and death. Blindness does have similarities with these conditions. You can describe your own life exactly as you like. But don't try to blind others to the truth of life. Perspective is part of reality, but not all of it.

I am not denying Tina her language or her feelings. I am celebrating her own description of her situation. It is completely understandable that Tina is in mourning for her sight. But this is the fault of a society which privileges sight over the other senses.

You are not helping, but committing a form of violence with this invasive morality of yours.

I am not a disability activist. I am an academic working on disability studies. No one is obliged to read this blog if it offends them.

That demon, Shane Jenkin, had at least a shred left in him of true morality - he said he expected to get 20 years for the gouging out of a woman's eyes. In other words, he knew he was guilty, and evil.

Whereas you, madam, try to deny both these facts.

No I don't. I agree that he is both guilty and evil.

My advice to you is to not let your mind become clouded by the present academic faith (as it really is more than a science) that language and perspective can change reality a 100 percent.

We can only hope to change the world by understanding how it works, by unpicking the myths and cliches which govern how people think.

It can't. And thank God for that, for if it could, there would be no place outside power, and no room for true love, which can only live by freedom.

Language is not an absolute, nor a magic stick which can make all your worries go away. The world is real after all. Your body, your emotions, your mind are realities beyond your representation of them. Other people are real too. And the tragedies that happen to them are real tragedies.

It is precisely because language is not an absolute that its use can be so insidious. Your own use of metaphors of blindness has shown how misuse of language can led to the confusion of myth and reality.


Here is a test whether I am right in saying that there is a real difference between being blind or seeing, or not:
You write that you are partially blind. Now, if a new technique was created which would give you perfect vision - would you use it or not?

This is a good question which I have thought about a lot. It is an academic question, a theoretical one really because there is no cure for coloboma and there never will be. But if a cure was found I would not use it. My reason for this is simple: the way I see is part of me. It has defined the way I think, behave anf feel since I was born. I cannot imagine myself without my blindness. If I suddenly regained my sight I think I would experience the kind of mourning that the sighted feel when they suddenly lose their sight. I bet you don't believe me. I bet you think that I am just saying this to further my argument. But you are wrong. I am proud of the way I look (in both senses). I never wish I could see perfectly. Sometimes I wonder if seeing better would make my life less complicated but I have never longed for sight and I'm certain that I would refuse a cure.



With regards, Maria.

Oh, and a PS: It is not "literature" which has taught us that "intentional blinding" - as you euphemistically rename this form of torture - is atrocious. What teaches us this is

1) personal experience with pain

2) compassion.  

We agree that intentional blinding is atrocious. But it is impossible to separate fiction and reality, or literature and life: Jenkin got the idea for this form of torture from a film he saw. This film, in turn, was probably inspired, either knowingly or unknowingly, by Western civilisation's fascination with intentional blinding, a fascination both nurtured by, and reflected in literature.

Big Blue Eyes?

Everyone in my family has big blue eyes. Except me. I am probably genetically entitled to big blue eyes but my coloboma has changed the way my eyes look.

My eyes, with bilateral congenital coloboma.

(Photo by James Kent)

I don't mind. I can gaze into my sons' eyes whenever I want and anyway, I like my eyes. They look a little bit like cats' eyes and I think they are striking and interesting. They fascinate people and are a great way of starting a conversation. Their size and shape means that I am particularly prone to 'red-eye' and generally don't photograph well but I'm not really that bothered about not being recorded for posterity in such a resolutely visual medium.

When I was about 14, my optometrist suggested that I might like to wear cosmetic contact lenses to make my eyes look like everybody else's. Even as an image-conscious teen I was instinctively appalled by the idea. It felt a lot like hiding, that I would be at once denying the reality of who I was, and acknowledging that I felt ashamed or embarrassed about the way I looked. I refused and the matter was dropped. Now I wonder whether the implications of that offer were perhaps more sinister. Would the contact lenses be for my benefit or the benefit of those around me? Sure, they might reduce the number of upsetting comments I received from strangers. I'd have been grateful not to have experienced the pity of the American lady in a hotel in New York in 1989 who stared at me in horror before addressing my parents with a sympathetic 'I'm so sorry'. Or the lady on a French train near Narbonne in 1992 who delivered the devastatingly double-edged 'Sans vos yeux, vous seriez presque belle'. ('Without your eyes you would be almost beautiful'). But was the well-meaning optometrist really thinking about the self-conscious teenager trying to make sense of her place in the world? By hiding my eyes behind a pair of big blue contact lenses, I would have been an accomplice in the dissemination of the widespread belief that perfection is better than imperfection, the normal better than the abnormal. These contact lenses would have been purely cosmetic. They would not have changed the way I see, only the way I look. They would have made me less aesthetically offensive to strangers encountered on trains or in hotels, allowed me to 'pass' as a completely sighted person.

The only way of challenging the myths about superficial perfection which govern our society and which the optometrist's offer reveal is to expose people to difference in a non-negative way. At the age of 14 I only had a very dim sense of why wearing contact lenses was wrong. Now I see that it is important not only to show people how my eyes look, but to show them that I am happy with how they look. That I wouldn't change them even if I could. That although big blue eyes are beautiful, they only represent one interpretation of beauty.