Holey Vision: The Grumpy Girl's Guide To Surviving Sight Loss

This speech was given on Saturday 17th September 2010 to the National Talking Newpapers Convention in Peterborough.

Good evening! First a disclaimer: this post supper instructional talk will include flashing images – for me that is not for you...also a little blurring and distortion. There will be strong langugue and it will certainly contain nuts.
Also please note that all opinions expressed are those of the author. Other visually impaired or blind experiences may vary.

To be frank I was initially a little bamboozled about what to speak to you about this evening. After all you ‘read’ the newpapers so you are already going to be pretty au fait with current affairs and am sure will know more than I about any events, remarkable breakthroughs or such in the visual impairment charity sector.
So I thought I would fall back on what I know best. To talk about what it like to find oneself visually impaired; how one is forced to adjust and reinterpret the world. Hence my title:

Holey vision: the grumpy girl’s guide to surviving sight loss.
I have – just in case this gets picked up by Women’s’ Weekly or Cosmopolitan broken it down into five top tips.
The first top tip in surviving sight loss is obviously
1) Don’t bloody lose it in the first place.
It is not just that sight is very useful for getting around the sales in Primark or finding a gap in the crowd at the bar at last orders ( in fact finding the bar) it is that ‘blindness’ is one of the great taboos of disability. ‘Eyes are the windows of the soul’ after all. We are suspicious of people who hide their eyes, shade them in sunglasses or won’t look us in the face. In some cultures eye contact is so powerful it is deemed dangerous and extremely rude to stare at one’s elders or ‘betters’. Most of us feel understandably that eye contact is an essential part of communication. To lose it, or to have one’s eyes disfigured in some way by disease is almost like being ‘branded’ as different....
And then think of all the connotations of blindness in terms of langugue, mostly negative; blind rage, blind fear, blind ignorance, blind faith. In mythology blindness is often associated with in-sight or physic ability, Tireseas, the Fates. More recently with supernatural hearing ability like the comic figure Daredevil, or extra sensory awareness like Geordie le Forge in Star Trek.

But mostly let’s admit it, it is associated with vulnerability, weakness and of course, absolute dependency. To be blinded is to be somehow punished, foreshortened, diminished. You ‘weaken the pack’, become a burden and still in many cultures including this one, are relegated to the bench of life, no longer a player, no longer expected an active part. . When given a diagnosis of a degenerative eye disease, it is not just the fear of losing one’s vision that cripples. It is the fear of losing one’s identity.

I was 21 when I was told I had a disease I still can’t spell, retinitis pigmentosa. After several rather gruelling tests the ophthalmologist patted my knee and said ‘Good luck. You have five to fifteen years of sight left..possibly.’
That was it. He couldn’t tell me how it would happen, how it would feel, he didn’t warn me of all the possible side effects, the other conditions that sneak up when your eyes become weakened. I, like many people in this situation, was left to find things out for myself.

Now the thing about RP, is that it is genetic and if the docs can’t find any family history, you are labelled a ‘mutant’...gosh mutant! See how immediately sexy disability can be? Anyway as a mutant everyone’s prognosis differs. Some people lose sight quickly. Others in short dramatic bursts with long periods in-between. Some people only lose a certain amount and then ‘stick’ like in a poker game. But because you haven’t got a clue as to how your eyes are going to change and all you can hear s that word ‘blindness’ gonging in your ears like the knell of doom you naturally panic. And you insist that everyone around you panics also. The panic may continue for years and it’s at this stage you will lose many friends and even the support and understanding of some family.
I was diagnosed in 1993 and my progression was thankfully very slow. It wasn’t until 2004 that I was actually registered blind. And, in fact, until recently I also worked with a foot in both camps – sighted and non-sighted partly because I can cope, get around, bluff it in good light (although I am totally night-blind). I used to cause great confusion when I was still working as a documentary film maker in Zambia in the early 2000s by driving my crew around through the day and then turning up at restaurants and bars in the evening staggering out of a taxi with a signal cane. I once was accused of witchcraft..but that was after several beers and no one was seeing straight by then anyway.

If you can imagine you have an empty loo roll in your hand. If you squash it a little and then hold it over your eyes it leaves about 10 degrees of sight in the centre which is about my current amount. The eyes are photosensitive (which means I am blinded by sunlight and bright florescent and low-light/night-blind) and I am losing colour vision. My peripheral vision is gone –whited out in places and in other bits – where the incredible brain-eye magic happens – some of the world doesn’t exist at all. My eye insists there is nothing there.
This can lead to remarkable brief splurges of hallucination as my brain tries to make sense of what the eye is saying is empty space. The brain says to the eye ‘yeah..I see what you are saying..but there IS something there because it doesn’t make sense otherwise.’ And the brain fills in the gaps. With anything it can. I have seen polar bears shopping in supermarkets; often see people pressed up against the windows of their cars only to find the car empty when I get close. Cats...for some reason visually impaired people see lots of cats!

This is not unusual and different sight loss conditions can cause different hallucinations. Interestingly there is a condition called Charles Bonnet Syndrome which is usually associated with macular degeneration. Studies have shown that sufferers often experience almost identical hallucinations sometimes so brain splittingly realistic that they cannot go on with their daily lives. Often patterns or landscapes and creepily on occasion small children dressed in Victorian clothing. I kid you not! When I asked an ophthalmologist if Victorian children were seen by MD suffers from other cultures i.e. Africa he couldn’t tell me.
There is a great novel in there somewhere!

But as I mentioned it is rare for GPs or ophthalmologists to give you the heads up on this. Potential side effects of distorted vision are almost never discussed with patients and Ii have met several people who thought they were losing their marbles and were too scared to even approach their GP.
Which, talking of ophthalmologists, GPs and the like leads me to my second top tip.
2. Learn a martial art.
– because you are going to need it! It doesn’t matter how elderly or frail you may be– if you are beginning to lose your vision you are going to need to learn kickboxing or at the very least how to handle a taser. Because, as soon as you start needing a cane or a guide to get around, you are going to become a non-person to some people, invisible to some people, pitiful and actually a little frightening to others. Yes I said it. Sighted people are often afraid of blind people. It goes back to what I mentioned at the beginning- how blindness is somehow a thing of nightmares. The Day of the Triffids stuff! Endless darkness.....cue Twilight Zone music.

To counter their fear many sighted people- and I KNOW this because I WAS one- use the ‘does he take sugar ‘ approach when dealing with someone with a cane, guide or guide dog. They feel it’s ok to stare, to discuss the person loudly with colleagues, to talk over their heads. Once, whilst in dark glasses and with long cane, I was waiting to get on a train in London when a complete stranger, without a word, came up behind me, picked me up and dumped me unceremoniously in the carriage. Like a suitcase!
Either way, when this happens a quick upper cut or blast from a taser seems to work wonders. I would advise the same technique when negotiating crowds or trying to get attention in Addenbrookes Eye Hospital
I have actually invented a cane sword stick but I’m not allowed to manufacture it. Sigh.

Top tip 3: Remember that by becoming VI you see better than anyone!
This is perfectly true. It is the strangest thing yet most OBVIOUS thing– a visually impaired person starts developing skills of balance and manoeuvrability immediately. The slower the sight degenerates the more time one has to perfect these skills. All VI people use their remaining sight to the absolute utmost. ALL and I repeat ALL VI people are the MOST visual people you will ever meet. We have to be. Our lives depend on how we use our remaining vision! Think about it. If I just nip out to the shop in the evening I have to negotiate darkness, (remember- night blind), busy roads, aggressive car parking fiends, holes in pavements, black bins on pavements, drunks on pavements, low branches and more. In the shop there is florescent light blinding, crowds, small children on heelies, blurred aisles and then the check out. The sighted person just goes to the shop. Visually Impaired people go on a tour of duty.

Sighted people have forgotten how to see. To really SEE the world around them. You don’t watch anymore and I mean watch using your eyes and your ears and the hairs on the back of your hands, the back of your neck. To sense a vehicle through your trouser cuffs ...! To feel someone coming towards you by the way the air bends around your cheek. .
Over the last few years I have taken up photography and have never had more fun than when teaching blind and VI people how to take photographs. How can we? they ask crossing their arms in an aggressive manner. We can’t bloody see.
But photography is not about a beautiful composition; it is about caught memories and snatched emotions.
A blind woman on a beach holds a new camera she has just been shown how to use. She asks a sighted professional photographer standing next to her what she should take a picture of. The sighted photographer says err..well what do you want to take a photo of..thinking the woman might say ‘the waves’ or ‘the sea’ but the woman says she would like to capture the way the sand grinds when the waves roll over it and the feeling of the seagull she can hear as it calls and its wings flap past and the sensation of the sun she can feel on her face and the energy of the leaping child with the dog she can hear and the sound echoing from the sea to the sand dunes...
And the woman photographer stops her and says you know..I have never really looked before.
That’s a true story folks!
After telling the VI/blind students this stuff and after guiding them around a camera, showing them how to use their bodies as tripods, their ears for focus the VI and blind photographers start experimenting. Taking photos of their families for the first time, of holidays and friends. They post pictures on facebook. They make cards and posters. They start experimenting they make art! It takes only a couple of lessons for someone who has never touched a camera before – who has been excluded from the visual world because of the assumption they won’t understand it - to engage again in ways more highly creative and inspiring and unusual than most sighted people.. It’s exciting stuff.

Ok I see time is ticking on and so I shall squeeze my last two top tips together.

No 4. If you are going to lose your sight...Lose the Guilt!
When I had to stop driving I wept. When it became too dangerous for me to even ride a bike safely in the street (and I live in Cambridge man..that’s a toughie!) I despaired. I felt so ashamed and I felt guilty as hell. Almost all disabled people do but especially visually impaired people who – like me- look sighted. No one believes us. We don’t believe us. We have to explain ourselves every day. No you see I look sighted but I only see in the middle..or yes I know I can see you now but you will be invisible when the light changes –...etc and on. Family members find it hard, friends find it hard and it erodes self confidence. SO many VI and blind people stay at home rather than face the constant challenges of both the environment and the people in it.
When I left work in 2007 I withdrew and began to feel more and more ashamed of myself for ‘failing’. Worse, I began to see myself as Disabled. As invalid. As useless. I began to really believe my life was over. In I was so sick of myself I took all my savings and went on a solo trek up several mountains in Nepal.
This may not work for everyone.. I admit it was a bit drastic...but it worked. I have never been more terrified or more exhilarated, lonelier or more intensely alive then when trying to negotiate a drop toilet in a shed in the dark that is held onto a mountainside by three nails and some barbed wire.
My thinking was that – if you feel dead anyway – what have you to lose? It cleared my head of my depression and I began to believe in myself again as a person who just sees differently not less. I am no less able. Just differently abled.

Of course facing ones fear has to be done everywhere. It can be about getting from Kings Cross to Paddington in rush hour. It can be about getting home from a party late at night. It can be about buying milk from Asda during half term holidays. As I said Visual Impairment can be very exhausting and it’s OK to factor this in, to be kinder to oneself, to say NO to some things and to say yes to others.

Top tip 5: Never Give Up and Never Surrender
Keep a sense of perspective and always a sense of humour. I was thrilled to learn that there was tactile pop-up pornography being developed for the blind for instance. I can’t to see that being read on a train!
I am happily getting used to the constant wolf whistles and shouts of ‘hello beautiful!’ now...the fact they are directed at my guide dog Grace is beside the point...we are a team. Ehem.
There is always another way. It is just that sometimes we are pulling on the door handle when actually it requires a gentle push.

I’d like to end with a quote. In 1957 Josei Toda, a brilliant Buddhist peace strategist said:
Without opposition there is no growth. It is hard to argue with that logic. A state in which we are free from problems or constraints is not happiness. Happiness is transcending all opposition and obstacles and continuing to grow.

So from this grumpy girl looking for happiness I wish you a very good night.

Photo: Lang Tang (c) T. Bush 2007