Skiing Blind

As my adventures at Go Ape show, I have always been a bit of a dare devil. But despite my love of adrenalin-fuelled activities like ice-skating and trampolining, I always assumed that my partial blindness would prevent me from taking part in really dangerous sports like skiing.

When I first 'came out' as blind at work and started using my white cane to get around campus, a colleague surprised me by recommending that I take my family on a skiing holiday. Her insistence that skiing is an essentially tactile sport which relies much more on touch and even hearing that it does on sight intrigued me and after watching some blind skiing online, I decided to give it a try. So last week me, my husband and our two boys travelled to Saas-Fee in the Swiss Alps to learn to ski.

Everything about skiing was completely new to me. I had never held a pair of skis, never been to a ski resort and I soon discovered that I didn't even know how to get into my salopettes. My first challenge, aside from familiarising myself with the layout of the hotel, was understanding what equipment I needed and how it worked. The first thing we did when we got to Saas-Fee was visit the ski-hire shop to pick up our boots, skis, poles and helmets. Luckily there were plenty of staff on hand to help us and I had been forewarned to bring all our height, weight and (continental) shoe measurements with us. Trying on ski boots was an adventure in itself. They come with a bewildering array of fastenings, straps and layers of padding and I soon discovered that putting on ski boots is a long and complicated process.

Properly-fitting boots are crucial for confident and controlled skiing 

because heels and toes are often used to control turns and improve balance.

Having managed to find some boots that fitted, I did not pay very much attention to the skis themselves. This turned out to be a mistake. Although my white skis looked very stylish as I carried them back to the hotel, it was only the following morning that I realised that they were not very easy to see on the snow! During the week, my biggest problems (and toughest tumbles) occurred when my skis crossed without me noticing. Next time I go skiing perhaps I'll try and get myself a bright orange pair instead.

When we finally got all our kit back to the hotel, I was relieved to find large and well-lit storage areas for boots, helmets and skis. Sighted readers might find this trivial, but one of my main worries before our trip had been what if I struggled to find my unfamiliar stuff (which looked and felt a lot like everyone else's stuff) in a badly organised and jumbled boot room. Happily there was enough space for me to find a familiar corner in which to keep my gear and this made getting ready each morning a little bit easier.

On our way to meet our instructor, I discovered that walking in ski boots is almost as tricky as learning to put them on. Even though our hotel was only a couple of minutes from the beginners' slopes, it felt like a long and difficult journey over bumpy snow and patches of ice. Without my white cane to guide me the unfamiliar route made me feel lost and disorientated, especially as I wasn't yet used to wearing my OTG (over-the-glasses) goggles. I arrived at the meeting point flustered and hot (which further steamed up my goggles) and was beginning to think that learning to ski hadn't been such a great idea after all.

When Simon and I booked our holiday we signed up for regular group beginners' lessons but as I watched the 2014 Winter Paralympics and saw the specialist guiding needed by the partially blind skiers I began to worry that group lessons would not give me the support and attention I would need to build my confidence. After several phone conversations and email exchanges with Esprit Ski in England who were in turn liaising with the hotel manager, the resort rep and the ski school in Saas-Fee, I was delighted to discover that there was a ski instructor in the resort who had worked with blind skiers before and who would be able to give us lessons for the whole week. 

Simon and I with our wonderful instructor/guide Jolanda: 

note our smart 'blind skier' bibs.

When we met Jolanda Stettler I was immediately struck by her openness and tact. One of the first things she did was ask me whether I would be happy to wear a 'blind skier' vest over my jacket. Given the stigma that still surrounds blindness, it must have been difficult for Jolanda to bring up this tricky subject which can make blind and partially blind people uncomfortable. A couple of years ago this suggestion would have upset me, but since then I have done a lot of work on feeling happy with my white cane and proud of my blindness and I was delighted to wear the vest. It immediately made me feel safer and more secure: I hoped it would remind other skiers to keep out of my way and encourage the ski lift attendants to give me a bit of extra help with those tricky drag lifts...

Jolanda's next job, after guiding me onto the nursery slopes, was to help me get into my skis. This was another challenge. Not only did I find it difficult to tell the front of my skis from the back, I found it impossible to position my boot so that it would easily snap into place. At first I was annoyed that this part of skiing seemed to depend on having enough vision to see the boots and skis. How would I ever become an independent skier if I always needed help before I even got started? But as the week went on, and I got more practised at putting on my skis, I found that I didn't need to see my skis or  boots at all. Once I'd felt my toes into position, trial and error helped me locate the right place for my heel. And if I'd judged it right, a very satisfying click told me that I was good to go. (Later in the week, after watching me struggle with the fiddly task of removing skis by fitting the ski pole into the back of the binding, Jolanda also taught me an alternative 'blind-friendly' way of removing each ski with the other boot.) 

After so much complicated preparation, gliding down a gentle slope on my skis felt easy.

The gymnastics I did as a child taught me balance and co-ordination and I have surprisingly good spatial awareness. Once Jolanda had shown me what position my legs and feet should be in, how I should lean and which parts of the skis should touch the snow, I quickly got the hang of turning and stopping.

And my colleague was right! Skiing is a very tactile sport. Even if I had been able to see my skis I wouldn't have wanted to look at them: it is much better to point your head in the direction you want to travel, and rely on the movement of your body to steer the skis. And feeling the contact between skis and snow helped me tell what kind of snow I was dealing with, which in turn told me how much weight to put into my turns.

As I became more confident on the snow I was more and more pleased that we had decided to opt for private lessons with an instructor/guide. Skiing itself might be a tactile sport but navigating down the slopes certainly isn't. Even with my glasses and goggles, I quickly discovered that I could not see well enough to distinguish the sides of the piste, other skiers or changes in the snow's consistency. Even on a slope I knew well I could rarely tell where I was in relation to its top or bottom. Without my guide I would not have got down even the gentlest of slopes. But when I was following Jolanda's bright orange guide vest and listening to her instructions I didn't have to worry about where I was or where I was going. Jolanda's movements and the sound of her voice and skis told me when to turn, when to be in parallel or snowplough and when to stop. I knew she would get me down safely. And she always did. And in the afternoons, when Jolanda was working elsewhere, Simon quickly got the hang of guiding me too.

Most ski instructors would be (understandably) nervous about teaching a partially blind beginner. After all, skiing is a dangerous sport and it is easy to imagine how a skier who cannot see where she is going could be a risk to herself and others. But Jolanda didn't seem nervous at all: her previous experiences with blind skiers had given her a clear sense of what I was able to do and whilst she never took any risks, she did encourage me to attempt more challenging lifts and runs every day so that by the end of the week I felt like I had made real progress. I was never terrified or panicky, but I was never completely in my comfort zone either: as soon as I felt confident doing something, we moved on to something harder.

I am not (yet) an amazing skier. I still like to go quite slowly and am cautious with my turns. But I can ski. And when I am following a guide I can reasonably confidently go down blue (beginner) slopes without stopping or falling over. I am so glad I took my colleague's advice. Learning to ski was an exciting, empowering and liberating experience which has given me a powerful feeling of self-confidence and a real sense of achievement.

With thanks to Abigail for giving me the idea in the first place, Soph and Dom for making it happen, Simon for being there with me the whole time, the staff at Esprit Ski and the Hotel Annahof for all their help, hard work and very welcome food and drink, Raffy, Zak and Cesca for getting me back out on the slopes every afternoon, Merri for cuddles and walks in the snow when skiing got a bit much, and of course Jolanda for her skill, enthusiasm, patience, generosity and sense of humour as well as for the photos.

  

The Voice Part 3: I Didn't See that Coming

I do not usually enjoy reading autobiographies and I am especially suspicious both of 'triumph over tragedy' disability narratives and of autobiographies written in haste after the subject has been shot into the spotlight by winning a TV talent show like The Voice. So it was with some trepidation that I curled up with the kindle version of Andrea Begley's account of her rise to fame, I Didn't see that Coming. I have already written two posts about how Andrea Begley's partial blindness has been depicted and discussed: the first when I initially came across her in the show's so-called blind auditions and the second as she unexpectedly (and somewhat controversially) went on to win the competition. In both these posts I made the point that the public have a much more disabling attitude towards blindness in general, and Andrea's partial blindness in particular, than she herself does. I am delighted to report that Andrea's book is exactly what I hoped it would be: a humorous, clever and personal debunking of many of the myths of blindness which are still so inexplicably embedded in society's collective consciousness.

Andrea is refreshingly honest, practical and open not only about what she can and cannot see but, more interestingly, about how she feels about her partial blindness. She is never sad, self-pitying or mournful. Her partial blindness is never a 'tragedy', a 'hurdle' or a something to be 'overcome' or 'cured'. Mostly it is not even an issue and occasionally it is an 'annoyance' or a 'frustration' which Andrea approaches with a wonderfully self-depreciating mixture of mischief and fun. But Andrea is very careful to emphasise that she is not a superhero. She has no extraordinary powers of hearing and is not one of those relentlessly perky 'super-crips' who feel the need to over-achieve as a kind of 'compensation'.  She is simply hard-working, well-supported and ambitious and she has got where she is through a combination of an unforgiving work ethic, lots of luck and a fair bit of talent. Anyone who voted for Andrea to win The Voice out of misplaced feelings of sympathy and pity has completely misunderstood what her partial blindness represents.

It is hugely important to have disabled people in the public gaze. But this is not so that other disabled people can feel 'inspired' to 'overcome' their own particular 'struggles'. Such an approach serves only to further stigmatise disability by distancing it. Rather, we need people like Andrea to write their stories so that the so-called 'able-bodied' can begin to understand that disability is not a necessarily negative condition deserving of pity and condescension. I think Andrea's book should be required reading for anyone who has ever looked at a disabled person with sadness. Not only does it answer many of the 'Is it okay to...' questions which worry the non-disabled, it also completely demystifies life with sight loss.

If I have one criticism of Andrea, it is that she readily admits that she relates to the world in a sighted way. She went to a mainstream school and has always learned by sighted methods where possible. She would still rather not use a white cane and has never learnt Braille. She does now use audio books and screen-reading software but I suspect that she would rather describe herself as 'partially sighted' than 'partially blind'. Andrea's resolutely sighted approach to the world is further evidence that we live in such an oculocentric world that even the partially blind feel the pressures to conform to sighted ways of being. But now that she is in such a prominent and powerful position, Andrea has the chance to further dismantle the sight-based myths which her book begins to attack. I'd like to see her wield her white cane in public more proudly and celebrate the power of the tactile by learning Braille.

My Problem with Children in Need

Pudsey Bear: the 'Children in Need' mascot

Last Friday the BBC ran their annual 'Children in Need' appeal to raise money for children and young people in the UK. According to their website, the 'Children in Need' vision is 'that every child in the UK has a childhood which is safe, happy and secure [and which] allows them the chance to reach their potential'. This year, nearly £32 million was raised on appeal night, as the British public watched a series of heart-wrenching films alternating with celebrity appearances, songs and features.

'Children in Need' is something of a British institution and I have watched it all my life. But it is only this year that I have begun to think critically about both the nature of the appeal, and the methods they use. Their aim is a laudable one, but shouldn't a happy, safe and fulfilling childhood be the birthright of every child? Why are we depending on the good-will of the British public to make this happen? Shouldn't it be up to the government to fund these services? Many of the projects featured on Friday's programme seem pretty crucial to me: hospices, bereavement counselling and assistance dogs don't feel like luxuries. They should be at the centre of a joined-up welfare system which ensures that every child is given what they need to achieve their potential regardless of where they live or their family's income. (Not to mention the problematic focus on the UK when children are dying all over the world right now).

Like guide dog puppies, children are hugely photogenic. It is easy to use sad music, well-chosen words and tragic images of cute children to guilt-trip the British public into donating a few pounds. Viewed critically, the 'Children in Need' appeal might be seen as a masterpiece of insidious manipulation. People give money because they feel sorry for the brave children who are struggling with truly terrible afflictions. For the next twelve months we are comforted by the thought of our altruistic act of giving and handily forget about the terrible unfairness of a welfare system which isn't doing the job it was surely meant to do. Giving makes us feel better, and there is no doubt that people are benefiting from the donations we make. Giving solves short-term problems but it does not necessarily help in the longer term. Charities are only as strong as their bank balance. If the money dries up, the projects vanish. This is why these services need to be centrally funded in a sustained and sustainable way. Rather than encouraging big business through enormous tax breaks, the state should pour as much money as it possibly can into making sure that every child in the UK automatically has a happy, safe and fulfilling childhood.

Another issue that 'Children in Need' conveniently forgets is the question of what happens to these children when they turn 18. Adult welfare and social care is woefully underfunded in this country and it is being cut dramatically even as I type. As well as (or instead of) giving money to 'Children in Need', please consider signing the WOW petition which calls on the government to completely rethink their welfare policies and priorities. Sick and disabled adults are much less photogenic than their younger counterparts. Yet they are just as much, if not more in need. I wonder how many disabled children featured on 'Children in Need' in the past are now disabled adults who are struggling because of government cuts and punitive welfare reform. Now that would be a documentary I'd like to see.

I have always felt a special bond with Pudsey, the 'Children in Need mascot. After all we both have an apparently inoperable eye-condition which doesn't stop us smiling. But increasingly I don't like  what he stands for. He uses the language of tragedy, pity, bravery and sympathy to get the British public to happily pay for services which our government should be providing. And he uses photogenic images and tear-jerking music to blur our critical judgement so that we stop asking why.

The Voice Part 2 The Result

In April I wrote about Andrea Begley's 'blind' audition for UK TV show The Voice : in that post I wondered how the judges - and the voting public - would deal with the presence of a partially blind singer in the competition. Would they reward her for her voice, or would they vote for her out of a misplaced sense of condescension and pity?

I have enjoyed watching Andrea's progress in the competition. Her folksy, melancholic, guitar-strumming, female-acoustic, singer-songwriter vibe is my favourite kind of music. But in a way I've been more interested in  how the show's producers have dealt with her blindness. And I've been pleasantly surprised. In the clips which precede each singer's performance they have focused on Andrea's sense of humour, wit and independent spirit rather than her disability. They showed her at work, travelling with her white cane and chilling with friends and family. There was absolutely no talk of triumph or tragedy. The judges have been less careful in their choice of words. Their repeated use of adjectives like 'inspirational' and 'brave' verge on the patronising and speak more of their own disabling attitudes than of Andrea herself.

Last night I had mixed feelings when Andrea unexpectedly beat favourite Leah McFall to win the show. On the one hand I was of course delighted for her. Not only because this might be her way in to a notoriously shallow and judgemental business, but also because we are desperately in need of positive disabled role models. But even as I type those words I worry that by giving Andrea the responsibility of being a role-model for the visually impaired, I am celebrating her not for her voice, but for her disability. And this is exactly the opposite of what she wanted to achieve by being on the show in the first place.

I hope that Andrea's unexpected win was down to the fact that all those who love her voice voted for her. And also, perhaps, that Leah's fans were lulled into a false sense of security and thought her victory was so guaranteed that they didn't need to bother. But I worry, despite the production team's brilliant handling of Andrea's disability, that there were some people who voted for her out of pity, some people who felt sorry for the poor blind girl.  If this is the case, and I fear it is, then attitudes to blindness, indeed to disability in general, have not changed as much as the success of the Paralympics led us to believe. As I prepare to leave for Paris to speak at the International Colloquium on the History of Blindness and the Blind, I am glad that Andrea has earned herself a place in the history both of blindness and of popular culture. But I await the next chapter in her career in the hope that it will put my nagging doubts about the motives of the voting public to rest.

The Voice: Blind Auditions

Andrea Begley during her 'blind' audition

(from bbc.co.uk)

At first glance BBC One's The Voice appears to be just another Saturday teatime talent show. Yet what sets this particular programme apart is its intriguing format, a format which has the potential to make the Great British Public think differently about blindness (and the blind).

In the early stages of the competition - the so-called 'blind auditions' - the four celebrity judges must decide whether or not they want to back each singer purely by the sound of their voice: they sit with their backs turned and focus only on what they can hear. Once they commit to supporting a performer, their chair turns round and they are allowed to watch the remainder of the audition.

When I came across the first series of the show last year I was very taken with its early stages. I liked the way these 'blind' auditions create a level playing field for the performers where age, size and shape no longer matter. I also liked the way that the judges' 'blindness' became a virtue: it seemed to make them more discerning, more focused, more 'real' in their choices.

I don't remember last year's episodes addressing the concept of 'blindness' head on: the term 'blind auditions' was nothing more than a phrase coined to help market the show.  But this year, the presence of partially blind singer Andrea Begley at the auditions gave the first episode a whole new dimension.

Public perception that blindness is a tragedy is so pervasive that it is almost impossible to find stories of blindness in the media which do not talk of bravery or courage, struggle or overcoming. But this is not Begley's story. On her website and in her performances Begley is first and foremost a singer. Her blindness is secondary to her career; it is an inconvenience, not a limiting or defining feature. If Begley is disabled, it is not by her lack of sight, but by society's attitude to it. Begley wanted to appear on The Voice because she wanted to be judged for who she is, not for who people think she is. And the fact that two judges turned proves that her blindness is neither here not there.

But however much The Voice claims to value 'blindness', this sightlessness is only temporary. Once the audition is over, the appearance of the performer is revealed. And it is no coincidence that as soon as the judges knew about Begley's blindness, their comments became tinged with that mixture of pity and awe which is so often found in discussions of the disabled. As with press reports of her performance (which found her 'heartwarming') it was hard to tell whether the judges and the audience were applauding Begley's singing, or the fact that they thought she had succeeded despite her blindness. It is a dismal reflection of society's persistently negative attitude towards blindness that Begley felt she needed to use a 'blind' audition in order to be judged on her own merits. But it is an even more dismal irony that the very show which has the potential to recast 'blindness' positively, appears to have done the precise opposite.

I am delighted that Begley has made it through to the next stage of the competition. It is hugely important for society to see images of happy, talented and successful blind people. But I worry that public reactions to Begley's blindness will undermine her own positivity by constantly assuming that she deserves pity rather than respect.

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.

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.