The Blind Traveller

Sometimes the stories you hear in the news about blind people doing extraordinary things (such as running marathons, breaking blind land speed records or climbing mountains) can be intimidating when you’re experiencing sight loss.  Some of the things I hear about blind people doing, I wouldn’t have even attempted fully sighted! 

Not everyone is an adrenalin junky or wants to be a record breaker, or whatever, but just wants to live as normal a life as everyone else.  Sometimes their disability can make that seem like an heroic effort in itself and going into your shell is so easy.
However, these stories can also help people realise that a disability doesn’t have to prevent people from achieving their goals or even just doing the things they love.
As someone still getting used to getting around with deteriorating eyesight the story of “Tony the Traveller” is inspiring.

I met Tony Giles this week.  He was born with a genetic disease the eventually robbed him of all sight and has only 20% hearing without his hearing aids.  He also had a kidney transplant in 2008.   He was telling me how he’d not long returned from a solo trip to Argentina and Antarctica.  He has travelled the globe, visiting all 50 U.S. and all 10 Canadian states, crossed the Artic Circle and bungee jumped in New Zealand.

With the help of local guides and fellow travellers he befriends he has visited more countries, experienced more exotic locations and tasted more weird and wonderful local cuisines than most people will in a lifetime.  Tony is 33.

Tony has written a number of books, in the form of his travel diaries, also available in different accessible formats.  You can find out a lot more on his web site "Tony the Traveller" .

For anyone going through the life changing effects of losing their sight, stories like Tony’s can highlight the fact that things they may have thought would become impossible to do, are still out there to experience, even if it might just take a little more thought and effort in how to achieve them.

Quote from the Tony the Traveller web site about his book “Seeing the World My Way”:

“Seeing the World My Way follows Tony Giles’ journey of hedonism and thrill-seeking adventure as he travels across North America, Asia and Australasia. Full of drama, danger and discovery, this fascinating travel biography is a young blind man’s view of the world as he sets out to achieve his dream, dealing with disability whilst living life to the limit.
From bungee jumping in New Zealand to booze filled nights out in New Orleans, Seeing the World My Way is a no-holds-barred account that is certainly not for the faint hearted. Travel the world in a whole new way with Tony Giles’ frank, honest and exhilarating romp through one adrenaline-fuelled experience after another.”

Glastonbury with a white cane

Losing your sight is more than just losing your vision.  You also lose many other aspects of your life and have to cope with and come to terms with changes that don’t cross the mind of people who only focus on the fact that you’re going blind.

I have found that I’ve had to deal with a complete change in who I am.  I used to be a graphic designer, I used to drive a VW Campervan, I used to love all variety of films, I used to be an avid reader, watch a lot of football and play video games.

All of these, if not impossible, are now a lot more difficult.  It’s things like this that define who you, so when you find you can’t do them anymore you lose part of who you are.  You have to hold on to as much as you can and adapt the way you do things.

The first topic of conversation when seeing someone is invariably how my sight is or other vision related topics.  I’m as guilty of it as the next person because it has become the major factor in my life and everything I do.  I’m the severely visually impaired bloke, the blind guy, the one with the dodgy vision.

I was also the one who went to Glastonbury Festival every year and I was determined this wasn’t going to change, just because I’m losing my sight.

Glastonbury Festival
Glastonbury is Europe's largest and longest running Music and Performing Arts festival.  I first attended in 1993 and haven’t missed one since 1999.  It’s something I do, my escape, my annual holiday.  The thought of missing it is upsetting. 

Last year the festival’s final headline act was Stevie Wonder.  He made a speech at the end of his set about how the world should be accessible to all.  It seemed deeply personal and I stood there, not knowing if it was my last festival because of my failing eyesight, with tears in my eyes.  When it came to the tickets for 2011’s event going on sale, all doubts of whether I should go or not went out of the window.  Somehow I would make it.

My friends all said help.  They would get me there and help me round, even though my condition had got worse since last year.

Getting there:
Once I’d secured my ticket I contacted the festival staff about getting a disabled pass.  This meant we’d be able to use the disabled car park, closer to the camping and if I wanted the disabled camping area too.  I decided against the latter, I’d be camping with my large group of friends with the rest of the 170,000 party goers.

With a Disabled Parking sticking in the windscreen of my friends car we were ushered to the disabled car park quickly and efficiently, parked up and in the queue for gates open.  Inevitably for Glastonbury, the heavens opened as we stood waiting to get our wristbands and information and this is where I have my only complaint about the festival’s disabled facilities.  It took forever to get the things we needed to get onto the main site.  We were queued outside in the rain for nearly three hours, with no cover.  People with various disabilities, including in wheelchairs, got soaked as the few staff did their best to reduce the queue of maybe 150 people. 

We then had to wait a long time for a minibus to ferry us to disabled camping. At least we hadn’t had to lug all our stuff across the huge main car parks.  It was a good service but did not take into account the numbers of people that were there for the opening of the festival. 

On site facilities:
As well as being given the festival wristband to get into the site, i was given a disabled camping and disabled facilities wristband and a code for the disabled toilets.  I was also given a pass for a carer, who would be able to accompany me when using the facilities, such as the viewing platforms, and this could be transferred to anyone I wanted to take with me.

The facilities at the festival for disabled people were a great help.  Getting around the huge site, which for the rest of the year is a working farm.  Viewing platforms at the main stages meant disabled people could watch the bands from a flat, slightly raised and less crowded position.

Next to each platform and dotted around festival were disabled portaloos.  The toilets at Glastonbiry are infamous and have an (unfair) bad reputation (they’re better than most large festivals). 

Having larger, cleaner and more accessible toilets is a great help as getting through the crowds and then having to queue as a disabled person is a lot more difficult.  Having a small combination lock padlock could have been a bit of a problem for the toilets without attendants but there was always someone with me to help.  The attendants at the viewing platforms were very friendly and helpful, as were almost everyone on site.  On seeing my white cane/wristband everyone was more than willing to give assistance, staff and punters alike.

Getting around:
it certainly helped that I know the massive site well and I was with a good crowd of friends, who were always willing to help (including putting my tent up, thanks guys!).  We made sure we camped near a path, with clear access (i.e. no guy ropes in the way).

Using my white long cane helped in a couple of ways.  It showed people of my disability and people would be happy to make room for me, to the extent that my group of friends started putting me up front when going anywhere because it acted liked the parting of the Red Sea !

Being a farm the ground is very uneven and rocky in places, making it treacherous at the best of times, when it rains it has an added hazard. it the wet slippery mud (and gloopy stickiness as it dries) it’s impossible to swipe the cane as you would on pavement, so where possible I had to tap (or sometimes just hover) the cane.  This made each step on the un-even ground hard work, not knowing whether it would be a dip, a rise or even a rock or other object.  By concentrating and being careful it wasn’t too bad but it was mentally as well as physically tiring and took a lot longer than normal.

It always takes loner than you think to get anywhere at Glastonbury, even more so with a disability.  I missed a lot of things I had wanted to see, mostly because of the time it would have taken to travel between stages.  The festival organisers have helped out a bit with this by having a few paths via the back stage areas between a few of the main arenas.

Overall:
I’m glad I decided to go, whatever my worries were.  I saw some great bands and comedians, friends I hadn’t seen since last year’s festival and the group of friends I always camp and have a great laugh with.

It’s a daunting place to sighted people so it could be overwhelming to someone with vision impairment. 

I missed a lot of the extra things that make the festival so special: the site art and decoration, the circus acts and street performers, the crazy people that go and all the weird and wonderful wackiness.  When going from stage to stage I had to concentrate on where I was going so missed all the stalls and all variety of colourful sights.  But the atmosphere and the brilliant music on offer (U2, Paul Simon, Queens of the Stone Age, Biffi Clyro,  Morrissey, The Kills, The Wombles! etc. etc. etc.!!!) and the invaluable help from Glastonbury Festivals Ltd and some special friends, made it all worthwhile.

And the next one will be my 20 year anniversary ! So I can’t miss that one.

Learning Braille

Yesterday was the anniversary of Louis  Braille's birth (b. 4 Jan 1809) and on my first day back at the RNCB I had my first Braille lesson.

Braille is the worldwide system used by blind and visually impaired people for reading and writing using raised dots signifying the alphabet and numbers.  Originally developed by Braille in 1821 as a replacement of a system of communiation devised for Napolionic troops so they could communicate silently and in the dark.  The original method developed by Charles Barbier was deemed to complex as it used a system of 12 dot which could not be feel by a finger all in one go.

The Royal National Institute for the Blind in France was approached and the teenage Louis Braille (blind himslef) created the system.  Braille letters are made up of raised dots within retangular cells, in a six dot positions (two rows of three).  The configuration of the raised dots and blank positions can be felt with a single finger, making it quick and easy to read and not confuse each letter.

You can read more about Braille and it's history and different form on the About website by clicking here.

So today I learnt how to position myself to make reading Braille easier, and how to read four letters, A, D, L and T.  Well, it's a start.  It wasn't too difficult as the configuration in those letters are very different.  It'll become more tricky as other letter and numbers are added.  I also learned how to type them using a Braille machine, similar to the old fashined typewriters but with three keys representing the appropriate dots, which imprint the page when depressed.

By the end of the course I will have a qualification in Level 1 Braille and possibly, depending how quick I pick it up, Level 2.  Levek 2 is more advanced, using a form of shorthand for certain letter sounds or words, such as CH or ST.  I'll keep you posted.

Off to the RNC

Not many posts recently as I've been having trouble with my laptop but I have exciting news.  I have secured a place at the Royal National College for the Blind (RNC) and will be studying Music Production.

After a year in limbo, not being able to work, I'm so excited to be joining this amazing college in Hereford.  It's an amazing place with incredible staff and facilities, working towards training it's students to cope with their disabilities and finding them the skills and places to work out in the real world.  As well as the music production course I'll be learning basic Braille and mobility with a white cane, future-proofing myself if my sight continues to deteriorate.

So, this blog will now include entries about my time at the college as and when time permits.  It'll be good to be busy again, I can't wait.

Moorfields, Glastonbury and the RNC

This is the continuing story of my vision loss.  For the first part please click here.

After numerous tests, including MRI scans, field tests, blood tests, electrodes on my head and across my eyeballs (not as bad as it sounds!), liquids squirted and lights shon into my eyes and even a lumber puncture, the local eye specialists and neurologist came to a dead end with what was causing my optic nerve to degenerate.  So they refered me to Moorfields Eye Hospital in London, arguably the best in the world.


Moorfields is the oldest and biggest eye hospital in the world and is internationally renowned for its comprehensive clinical and research activities.  I had more tests and the specialists there told me that they too couldn't find any underlying problem or a cause and therefore treatment for my condition.  As it is my nerves dying off it is extremely unlikely my sight will improve and they can't tell me if it will continue to get worse or if it will level off and I will keep my remaining useful sight.

Obviously this is quite worrying as the vision in my left eye has decreased rapidly in recent weeks, to the extent that most of my sight in this one eye is frosted.  It is quite possible that my condition is congenital and has been slowly getting worse all my life.  An analogy was used: that nerves have a built in lifespan and that most people have long life batteries whilst, for some unknown reason, mine are cheaper batteries that are running out quicker.

It's not until I try to do things that I have done for years that I really notice I have a problem.  Sometimes reading can be difficult, watching the World Cup has becomer interesting as I lose the ball on screen because of my narrow field of vision.  And it was impossible to watch Wimbledon, which to me just look liked a couple of people running from side to side, spotting the ball being luck more than actually following the game.  I have learned to live with this "new normal", a phrase borrowed from Laura Lawson in her excellently written blog about her own sight loss, "Believing is Seeing".


Since 1993 I have been going to the Glastonbury Festival and this year was no exception.  This year, since my vision has really deteriorated, the festival was a very different experience.  Glastonbury is the biggest music and contempory performing arts festival in Europe.  With nearly 200,000 people on site it is the size of a tented city.  Over 1000 acts play over the last weekend of June and it has become my annual pilgramage.

Though I was able to really enjoy some great music, many of the things that colour the festival and differentiate the place from many other pretenders the the crown of best festival, I struggled with.  The random street theatre acts, the madness and characters that populate the place were so difficult for me to spot, even when pointed out by friends.  The multitude of eclectic stalls selling a vast varietry if wonders, the beautiful site artworks and craftwork decorations, in the main, passd me by.  Watching Muse's brilliant headline set was more like watching an amazing light show than actually seeing them.  I had to be told U2's The Edge had joined them on stage when I asked a friend what the cheers were all about.

Although using my white symbol cane helped amongst the crowds of people, if my sight gets too bad it might be too much for me to even get around the huge site so it was quite an emotional festival for me in the end.  Especially with the final act of the weekend.  Stevie Wonder headlined the main Pyramid Stage on the Sunday night and I watched with the thought I might be watching my last ever Glastonbury performance.  When he ended his set with a monologue about making the world more accessable to everyone: the blind, the deaf, disabled, people of different races and religions, it felt very personal to me.  I was in floods of tears.



But I have to look forward.  I have been given no idea how long my limited sight will last and therefore can't fully plan or mentally prepare for "the worst", however I am looking to the future.  I have applied to the Royal National College for the Blind (RNC) in Hereford, to train in Media (Radio) and Music Production.  I am due to have an assessment before I start, hopefully in September and I'll update Vision Web Sight with stories of the college, the course and my progress.

The college is an amazing place with state of the art equipment, specialist tutoring and all the needs of blind or visually impaired students.  The courses are vocational and not just as case of training people then leavin them to fend for themselves in the real world.  The college actively helps place you in relevant work placements during and after the course.  I'm really looking forward to exploring what I CAN do and not worry about what I can't.

To find out more about the RNC, click here.

It was Glastonbury Festival's 40th anniversary this year and I will be 40 later in a few months.  And you know what they say, life begins at 40!

The Blind Designer - about me

I'm DeeDubya.  Let me tell you a little about myself.

Six months ago I was diagnosed as Visually Impaired.  My sight had been getting worse for a few years but I had put it down to stress and tiredness - a messy divorce, house repossession, family illness, not being able to find the right job in the recession, I thought, all paid their toll.

It turns out that for, as yet, unknown reasons, my optic nerve is degenerating.  After many tests and appointments at the excellent West of England Eye Unit at the Royal Devon and Exeter Hospital it was determined that my actual eyes are fine but for some reason the messages from eyes to brain aren't getting though, an abnormailty in my visual pathway.  I'm still undergoing treatment and it is uncertain whethe3r the progressive degeneration in my vision will get better, stabilise or get worse.

My condition manifests itself in close to no clear vision on my left eye and very narrow vision in my right.  The part of my vision that I can see I can see very well.  Bright light causes me problems and tiredness makes it worse.

As it's nothing to do with my eyes I don't need glasses, outward appearances make me look totally healthy, something that can make it difficult for people to realise I have a problem.  It became a problem one day when the bluriness of my good eye crept into my central vision.  Suddenly I couldn;t do the things I had before.

It's a bit of a shock being told that you're going blind.  Overnight I went from working, driving, doing all the normal things of everyday life to having to cope with none the freedoms available to normally the sighted.

Looking back I realised that it must have been happening for a long time.  I was known as clumsy, now I realise it was because I didn't see things properly.  I'm alot more careful now I'm aware and don't tend to break things anymore!  For as long as I can remember I used to let people walk slightly in front of me, it wasn't out of politeness, it was to keep them in my narrow field of vision.

Strangely it was almost a relief to know that there was something physically wrong with me and I wasn't going mad.  However, a million things go through your head about how your life will change.  Luckily I have great support from my family, friends and organisations like Action for Blind People who have been an amazing help.  Although I still need help with some things I live as independently as possible.  I've worked out a future, have plans.  My life isn't heading in the direction I expected but I am moving forward.  I'm sure you'll hear more about my situation and plans as this blog moves progresses.

My background is graphic design.  I worked in advertising and television for 15 years so the loss of vision isn't ideal!  There IS so much support out there that can help people suffering from visual impairment that there is no reason to give up.  The thing is, that information isn't always easy to find and it's not always apparent just how much assitance, inspiration and actual need there is out there.

That's why I created this blog.  I'm glad you found it and I hope you find it useful.  Your comments and contributions will help it grow.  I'd love to hear from you, your experiences, any help you can pass on, even your worries and grumbles.

Get in touch.

email  deedubya@visionwebsight.com