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On Being 'A Bit Blind'

Mullardman

Moderately extreme...
My daughter, who is blind, posted this on Facebook. I'm sharing it here, not in an accusatory way, but for info.

The way I see it: living with partial blindness
Of all those registered blind or partially sighted, 93% retain some useful vision – often enough to read a book or watch a film. But this can lead to misunderstanding and confusion
Annalisa D'Innella

Mon 14 Nov 2016 07.30 GMT Last modified on Sat 25 Nov 2017 04.07 GMT

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Annalisa D’Innella: ‘With my cane sweeping in front of me, I feel amazing. I feel free.’ Photograph: Alessandra D'Innella
Two young men are in my way. Their laughter echoes off the houses opposite as I move quickly to skirt around them on the narrow pavement. As I pass, they fall silent. I am a few inches away now, my white cane skimming the uneven paving stones, when one of them shouts to the other. His voice is confused, angry. He is shouting: “She’s not blind.”

You can’t be a bit dead. It’s a binary thing. You either are or you aren’t – same goes for pregnancy. But what about blindness? Can you be a bit blind? Is that allowed? And how does that work? What does it look like?

It looks like a woman seeing two men in front of her and using her cane to navigate around them. It looks like a man folding up his cane outside the cinema and going in to enjoy a movie. It looks like a girl on a train reading a newspaper while her guide dog rests his chin on her lap.

I have a genetic eye condition called retinitis pigmentosa (RP). One in 3,000 of us have it. People with RP begin losing their night vision and peripheral vision any time from infancy to their early 20s and, in many cases, lose their central vision entirely in later life. Many of us struggle in bright light as well as low light. Many of us wear sunglasses in the rain. But what most of us contend with for a good few decades is tunnel vision.

Imagine looking through a fogged-up window with a tiny dot of clarity in the middle. Now imagine the dot as a cursor on a screen. I can move my eyeballs around to get a sense of the big picture. This is why I am able to see a train arrive at the platform, walk to the doors and get in without needing help. I can also find a seat, get out my Kindle and read this summer’s bestseller.

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But there are a multitude of situations where my scanning technique isn’t up to the job. Playgrounds, revolving doors, pavements – most outdoor places, really. So I can enjoy lunch in a cafe. I can get the bill and type in my PIN. All this will be fine until I get up, walk into a chair and fail to locate the exit. Once I have found the door, I will probably have to scrabble around to find the handle. I will be that person, hesitant and slow, standing on the pavement outside until my eyes adjust to the sun. I will get in your way. I will hover at the top of the stairs gripping the railing. I will apologise constantly, even though I won’t have actually seen what I have done wrong. I will crash into you as you queue up at the turnstiles at the tube station. When I get home, I will cry from nothing more than sheer physical exhaustion. My head will ache. My neck will ache. I will check my new array of flowering bruises and will decide to cancel all further social engagements because it has just been too bloody hard. But when I am reading my Kindle on the train, I look normal. I feel normal.

Lately, as my central vision has begun to worsen, my scanning technique has become less effective. My eyes do not clasp on to those crucial details – facial features, for example – with the ninja-like speed they used to. I am missing more. The misty mazes around me feel thicker and more befuddling. So, last year, I decided to abandon the art of being sighted. It was a decision made with surprising ease. I called social services and was put through to a man called Andy who offered me mobility training and the gift of a shining white cane.



An RNIB graphic shows how cane users can enjoy activities most people would assume they can’t. Photograph: RNIB
When I say I made the decision “with surprising ease”, I mean that it was with tooth-gnashing resistance. I waited for Andy’s first visit with the enthusiasm of a condemned woman. The surprising ease came later. Andy showed me three different canes. The symbol cane looks like a conductor’s baton. It doesn’t reach the ground. It is there merely for show – to let other people know you cannot see very well. I had never heard of a symbol cane before. Andy showed me two other canes that touch the ground, thereby giving the user “feedback”. We decided I needed feedback. My heart was thumping as we left the house together with my new cane. I felt sick with misplaced, wrongheaded and overwhelming shame.

And yet, a few days later, I was swanning through Canary Wharf shopping centre, my cane sweeping the shining floor in front of me, my daughter skipping alongside. I wanted to dance and shout. My eyes didn’t ache. My back was straight. My stomach was unclenched. I felt amazing. I felt free. I felt as though I had got my sight back. I realised so much on that day – what it felt like to be in the world and not feel stressed; why my friends and family are never as exhausted as I am all the time; how mad and wrong I had been to expect myself to be able to keep up with everyone else; that I had to forgive myself for not being able to keep up.

And, as I glided around, my daughter and I chatted about the window displays. With the cane, I could free my eyes to admire my surroundings. And people kept apologising to me. All the time.

And then it happened. That pang, that familiar summoning of resilience, that surprise arrow of shame. I neared a doorway and stopped, because I saw a man approaching and I decided to wait for him to open the door rather than open it myself. I did this because, in that split second, I felt compelled to “play blind”. In that split second, I felt like a fraud.



Another RNIB graphic. Photograph: RNIB
“Who cares what people think?” It’s always angry, that statement. I have had it said to me a lot recently. I have also seen the expression of genuine incomprehension from Andy. “The cane is here for you,” he said, exasperated. “You are not a fraud. You are exactly who it’s here for.”

We all feel the need sometimes to explain ourselves to strangers. We all want to present a coherent picture, to make sense. Psychotherapist and cane-user Rachael Stevens has RP. She spoke about it on BBC Radio 4’s Today programme and was flooded with positive responses from visually impaired listeners. One caller spoke of a nasty encounter in which he was accused of being a “benefits fraud”. Stevens herself once told me about a time she had been confronted outside her son’s nursery by a man who had planted himself directly in front of her, smirking, as if to test her.

In order for guide canes and symbol canes to be effective, they need to be understood. Somehow, some time ago, the people who came up with these valuable low-vision solutions only did half the job. They didn’t put the resources needed into raising public awareness and, as a result, the cane has become symbolically too blunt an instrument.

I took the decision that I had to find the best way I could to present myself as partially sighted. I had to be me in the world. I unfold my cane whenever I need it. When people move out of my way, I thank them. I use different canes for different situations. I don’t use a cane when I am with my toddler as I have not yet found a way to hold a cane and push a buggy simultaneously. Also, I have found that the buggy itself (as well as the yelps from my son) provide adequate feedback. Some days, the light conditions are just right and I can operate without a cane. Other days, I stand at the front door and can’t take two steps forward.





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Some people with RP rely on guide dogs. Photograph: Alamy
I talk to people about my condition as much as possible. “Are you allowed a guide dog?” asks a friend. Good question. Yes. Jessica Luke, an RP friend with a guide dog, came with me to give a talk to my daughter’s class at school. We put up slides showing the different ways people see. We got one teacher to wear RP-simulation specs and we threw her a ball. She dropped it and the kids screamed with laughter.

The Royal National Institute for Blind People (RNIB) website tells me that 93% of people who are registered blind or partially sighted in the UK retain some useful vision. So why isn’t there better understanding of visual impairment? Is it because it is easier for sight-loss charities to raise money if they present a more simplistic, pitiable image of blindness? Or is it because it is thought too complex an issue to explain? Dyslexia is a complex condition, but nowadays a child with dyslexia can grow up in a world that (largely) understands their needs. I believe passionately that the same must be done for partial sight.

Blindness is not binary. It is a rich and fascinating spectrum. Visually impaired people come in many different variations. Some of us have central vision but no periphery. Some have periphery but no central. Some see the world through a window stained with blobs. For others, it is all a blur. We could form a zombie army. But we will probably just quietly get in your way on staircases.

And, given the chance, many lovely people do understand – such as the man who saw me holding my cane, squinting up at a noticeboard at St Pancras station. As I sat down next to him, taking my Kindle from my bag, he leaned over: “Did you get all the information you needed from that board?” I replied that I wasn’t 100% sure but I thought the Sevenoaks train was arriving in 10 minutes. He got up, checked the board and confirmed I was right. “Well done,” he said. “Thank you,” I replied, and we both got on with reading our books.

To find out more about the RNIB’s #howisee campaign, visit: rnib.org.uk/howisee

To find out more about RP, visit rpfightingblindness.org.uk
 
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Excellent post thanks Mull.


My 28 year old daughter has had full left field hemaniopsia since the age of three.
It means she has no left field vision in either eye.
You would not know unless you threw a ball from the left and she would not react. She can’t see any threats on the left either.

anyone interested, this is what it is like for her.

 
I just shared it to my Facebook - Thanks Mull.

My son has Oculocutaneous Albinism and is registered partially sighted. He will never drive, and he has a symbol cane for crossing roads. His vision is foggy that gets worse at a distance.

He has Nystagmus, the same as the lady in this video.


It would be great if people were made more aware of this because although he copes fine now, I do worry about his future (crossing roads is my main worry).
 
Great thread.

It’s hard to credit how unthinking some people can be. How can you not realise that sight is far more complex than yes/no when half the population wears eye glasses for various reasons? Have these people never been to an optician?

(On a related note: to anyone who designs anything...please understand that a significant proportion of people are colour-blind, in one way or another. Use of colour for information purposes is great, but do not make it the only cue. I’m not colour-blind but I see this mistake made so frequently that it really annoys me.)

Kind regards

- Garry
 
An excellent thread, my wife has lost 80% of her vision in her left eye due to Glaucoma. She began to get symptoms in her early 30s, two opticians ignored her description of the symptoms, and declined to measure intraocular pressure. Her GP initially diagnosed migraine, then sent her on a battery of tests for a brain tumour.

Eventually she went to my optician, who is superb, and on hearing her symptoms immediately measured the intraocular pressure, and immediately sent her to the emergency eye clinic, where Glaucoma was quickly diagnosed.

All that took 9 months, enough time to destroy 80% of her vision in her left eye. It has now been arrested through medication and laser surgery.

We think that opticians should measure intraocular pressure as a matter of routine at eye tests in the over 20s, and not wait until patients are over 30......
 
I’ve always been blessed with excellent eyesight, way better than average, but lately, as I’ve got older, it has declined and I need specs for reading and looking at computer screens. I’m starting to realise what a handicap less than ideal vision is, even though mine remains entirely fit for most purposes. So thanks for this wonderful insight, Mull.
 
Excellent post.
My mother had macular degeneration in both eyes for the last fifteen years of her life. She could make out shapes, but not detail. She loved to read, but lost that pleasure
 
eye sight is such a precious thing. I am very short sighted -7.5 & -8.5 plus an astigmatism, and I am terrified of it getting worse.
 
A really special post.

I have Glaucoma in both eyes, have been told by my consultant that it can be slowed by drops and possibly laser surgery, currently on strong eye drops. Have been stable for about 8 years now, my consultant said that possibly it would start to progress further after 10 or 12 years. Time will tell.

Still able to drive but get tests either yearly our every third year, dependant on the DVLA.

Having worked in a job where I was in contact with people who worked with partial or blind people it is an issue that is difficult having a condition knowing what I learned over 20 plus years.
 
I'm genuinely touched by all of the positive and thoughtful responses here. It is good to know that people are either aware.. or willing to become more so. And of course my post was not just meant as a self pitying lament for my Daughter, but as info for all.

My daughter is almost 40 now. She is married, with two beautiful children. She is a graduate linguist, now working as a HR Manager and she rarely complains, but I know that just the struggle of getting to and from work on public transport takes its toll.

On the other hand she has travelled much of the World, jumped out of a plane at 12000 feet... swum with dolphins and ticked many other things off her bucket list. And she is light years ahead of her husband when it comes to DIY. He's a decent chap.. for an East Anglian Yokel. and he works hard.. but he is not safe near any level of DIY.

I'll also admit that I too find it difficult to fully understand what she is dealing with, because ...apart from a general understanding of her restricted field of vision and her total 'night blindness'.. I too easily lapse into assuming she can see what I can see.

FWIW, I've worn specs since I was 5 or 6 yrs old. I'm now around +6 long-sighted, or 'hypermetropic' as they say, with added frilly bits like astigmatism and a squint. But for all practical purposes... I can see perfectly with specs. I've recently been told I have cataracts developing, especially in my left eye. I also apparently have a condition where bits of my retina fall off and could block the drainage of my eyes, leading to Glaucoma.. but regular monitoring by our wonderful NHS looks after that. I'll take that at 71.

P.S. I've just recalled that way back in 1971, Mrs Mull and I were living with her parents in Liverpool. I was travelling each day to work via an impossibly early bus, to the rail station in Fazakerley. ( Yes. it really does exist!) The station was unmanned and unlit at that God forsaken hour... but each morning.. I'd see a young girl with her Guide Dog make her way down onto the platform opposite. A train to Liverpool would pull in and when it was gone.. so was she. In those circumstances, she may even have had an advantage over the few other passengers.
 
Very enlightening to a "normal" sighted person. I have had no contact with blind or partially sighted ever before although my MIL has macular degeneration affecting her significantly now.

Please thank your daughter for her openness and guidance to the rest of us.
 
Apologies. I meant to also acknowledge that there are many other sight conditions as mentioned above. Also.. apart from sight.. there are many other hidden disabilities.
 
It was only last night son and I were watching a film together and I had to rewind the film, so he could put his head right up close to the TV, because I knew by his reaction that he didn't see what happened (I was laughing, but he wasn't, and it's more likely to be the other way round with me being a miserable old fart). I also have to read any subtitles for him. He was sat about 6ft from a 50" TV and I'm now wondering If I should buy a bigger TV. Not sure it would help though.
Something that I just remembered was when I used to drop my boy off at junior school, he would see there was a gang of kids in the playground but didn't know it was his mates, so he would walk by them, looking out the corner of his eye to make sure, and to not feel stupid or awkward (autism doesn't help here). In the end I got know who his mates were, so I would point in their direction for him.

My girlfriend is also very short-sighted but glasses work for her, so she understands his difficulties better than me. Years ago, I texted her to let her know I was outside her house (I was parked a few cars down from her house) and she came out without her glasses on and sat in a car and turned to see she was sat in an old mans car. We laughed about that for quite a while (still not sure how much of that was just her being dappy).
 
I've recently been told I have cataracts developing, especially in my left eye.

my mother (78 next week) is more shortsighted than me -8, -8.5....had a cataract done a few weeks ago, now she can see without glasses correction in one eye for the first time since she was 7 years. She tells me it is miraculous. ATM she is wearing glasses with a lens removed on one side. She is waiting for the other eye to be done
 
my mother (78 next week) is more shortsighted than me -8, -8.5....had a cataract done a few weeks ago, now she can see without glasses correction in one eye for the first time since she was 7 years. She tells me it is miraculous. ATM she is wearing glasses with a lens removed on one side. She is waiting for the other eye to be done

I had “early onset cataracts” in both eyes in my late 40’s. Both lenses were replaced (not the most comfortable of operations!). 19 years on and they’re still good. In those days the replacement lenses were fixed focus, so I have one which is focussed short and the other which is focussed long - amazingly the brain manages to sort it out.

Technology advances and the modern ones (like my wife’s) are Varifocal. Your Mum will be delighted when the other eye is done.
 
I have a friend who has a similar degenerative eye condition, and I didn't realise how bad it could be until we went to the Bristol HiFi Show a few years ago. I had to lead him around, as the light in the corridors was too dim to prevent him walking into things. To me the light seemed perfectly adequate.
He has provided a few laughs though, particularly getting into someone else's car! :D
 
Mull - thank you for your post re your daughter's experience.

Re gintonic post about his mother's cataract removal "miracle"
I had my cataracts removed in 2012 after wearing glasses for short sight since 1952, I had dual focus lenses inserted so that I can read at a normal distance and see at normal driving distances without using any glasses. I have a pair of +1.3 ish dioptre glasses to use the computer.
At the sightest hint of cataracts go for private replacement of the lenses and if appropriate get dual focus inserts installed.

The cost will be repaid by the saving in having to get new glasses on a yearly basis as the sight declines over time.
 
No idea how I’ve just come to this thread. Apologies for resurrecting it but I wholly relate to the entire thing. The OP is spot on in respect of sight being seen as a binary thing. You are either blind or a fraud. Being partially-sighted is simply not a thing. There is no inbetween.

Many of the facts cited in the OP are not quite right. No idea where the 93% who retain “useful” vision came from. The figure is actually 96% :) and is derived solely from sight-registration stats. The numbers registered are not great and are confused by registration being both a voluntary choice and something consultants repeatedly only offer as a last resort when all else is exhausted rather than as the first thing which might plug you into passported benefits both literally and metaphorically. Equally the term “useful” is misleading when the stat. us not based on that at all. It’s based on perception of light i.e. 4% of registrants are wholly blind in that they have no perception of light. The other 96% have some perception of light but that includes a number for whom it’s useful and a number for whom it’s meaningless. Advanced RP is a great example of the latter. Finally RP onset tends to be from 12 to as late as 30 and there’s no such thing as being registered partially-sighted. The term was removed from the legislation about two decades ago as it was so unrepresentative of the experience. You’re registered sight-impaired or severely sight-impaired. Frustratingly and ludicrously still used on CVIs.

Similarly any figures on so-called rare diseases are essentially guesses. Many people can go undiagnosed for decades and the figures change all the time as researchers have sussed that you need your area of research to be sufficiently rare to be interesting but not so rare that you can’t convincingly argue for money and research subjects. Thus Nystagmus has come down from 1 in 4,000 to 1 on 1,000 and no-one can quite explain why :)

Have to also express an active dislike of RNIB, who absolutely and astoundingly don’t get sight-impairment. Just total blindness. The videos are not bad but I wince when I see the simulations as they are so far off you’re just embarrassed for them.

Wholly recognise your sons experience @Fatmarley as I’m someone with OCA2 and Nystagmus. Did you get a bigger TV? Will help for some of us but not for others. Spent most of my life on the floor getting closer to the TV than other people could comprehend. Literally cried when we got a 50” TV as it was the first time I’d sat on a sofa and watched TV in my entire life. I was in my 40s at the time.

Presume your son has plugged into NN and Albinism UK?
 
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