Going blind – what then?

Many people have asked me whether I’d rather be blind than deaf, or if I wish I’d been born blind rather than lose my vision at 18.  I never have much of an answer to these questions, as I can only deal with what I know.  For a lot of people, going blind is their “worst nightmare”.  I met this nightmare head on when I became a paid up member of the “blind community” in 1989.

Although I was born blind in one eye due to a condition known as coloboma/microphthalmia, this did not prevent me from attending a mainstream school.  I  considered myself to be more or less the same as my siblings and other children my age.  When I gained a place at St. John’s College, Oxford, to read Classics – I thought I was entering paradise.  I loved Classics, and still do in my heart.  But this is where my life took an unexpected turn.  During my first year I experienced a sudden onset of glaucoma and within weeks my useful vision had more-or-less disappeared.

I felt utterly helpless and at the mercy of other people.  For a short while I  tried to carry on as if nothing had happened, though reality came down on me pretty fast.  It was obvious that I could not continue at Oxford, so plans were made for me to attend the Royal National College for the Blind.  But I had no intention of readjusting or rehabilitating.  All I wanted was to see again.  That was my one and only mission.  Therefore I resisted all help and refused to consider using technology.  In those days assistive technology was fairly basic.  The BBC computers with early versions of JAWS had absolutely no appeal for me.   If anything, technology scared me –  I couldn’t even type my name.  Everything was beeps or bumps.  I wanted to obliterate beeping clocks and tactile mats.  They were reminders of my blindness and I pushed them away.

So my first days at the Royal National College for the Blind were pretty hellish.  There were some people who, like me, had recently lost their vision.  Others had never been able to see, and others could still see but not particularly well.  The thing I found most difficult was being surrounded by blindness.  It wasn’t a world I accepted.  I don’t even think I considered myself to be blind, I was just me.

Looking back it was the psychological impact of blindness that affected me most.   Accepting my situation was far harder than not being able to see the colours of my clothes.  As I’d never learned braille before, I did not take to braille easily.  I just about learned to read braille but I quickly decided that it was not going to be my main medium for communication. Expert braillists can read two lines at once with both hands, but they’re usually people who’ve started at an early age or really want to persevere.  I turned to audio technology but my brain resisted.  I’ve got a photographic memory, so I think visually.  I found that my good memory invariably began failing me, and this increased my frustration.  Even now I have to translate audio messages into a visual pattern in my head.  For this reason I left it about 5 years before attempting to listen to an audiobook.  The feat was laborious, and I found it hard to concentrate.  If this was how I was meant to “read”, I hated it.  But with no computer and no other means of reading I didn’t have an alternative.   Once I’d accepted this, I reluctantly started to borrow recordings from the RNIB library.  Now I can’t get enough.  With MP3 downloads and iPads, the audiobook scene is improving.

Slowly I became better disposed towards gadgets and technology, and now I’m gadget-mad.  The beeps that used to plague me 20 years ago are now my mates.  With increasingly advanced technology the practical problems of being visually impaired are less of an issue.   There are gadgets which enable you to safely make a cup of tea, label tins or files, measure quantities etc.  My talking microwave is the star of my kitchen, and my mobile phone with TALKS is my right hand man.  There are gadgets and aids for just about any indoor task.  Computer screen-readers such as JAWS and Guide have certainly transformed my quality of life.  My three year-old laptop is my launch pad.  The only barrier to the world is the growing number of websites with poor accessibility, but that’s  another story.. The down side of specialist technology/gadgets of course is the cost.  Being visually impaired is not cheap, and this is accentuated by the fact that in the UK the vast majority of blind people are without work.

So much for gadgets and audio technology.  What about the social side of life?  Before I qualified with my guide dog Trudy I struggled daily with the general public.  Unfortunately, most people steer away from  someone tapping a long cane on the pavement.  I am not that good at asking for help, so more often than not I encountered difficulties when I was out.  I used to bump into lamp  posts and apologise to them or ask if they’d please let me by.  When you’re blind and stressed lamp posts and humans are not distinguishable.  Making a fool of yourself in public is one reason why most visually impaired people refrain from going out.  I can laugh at myself now, but it took time.

I found that there were people who avoided me through fear, and others who raised their voices when they spoke to me. Sometimes people would think they were helping by grabbing my long cane and pulling it across the road with me trotting behind in alarm.  It seems funny now.  I’ve had so many disasters with public transport that it’s amazing I’m still in the UK.  I ended up at Heathrow Airport once instead of Victoria station.  These crises often bring out the kind and helpful side of people.  Nevertheless I began to see my long cane as a huge barrier when it came to socialising and being accepted by people.  Isolation is a common side effect of blindness.  I’ve lost count of the number of times I’m still talking to someone after they’ve left the room or wandered away.  Another favourite is to answer people when they’re not addressing you.  Not being able to read body language puts visually impaired people at a serious disadvantage in social situations.

I became quite reluctant to go out on my own, and often left my long cane at home.  This meant that people invariably thought I was drunk because I was stumbling along bumping into things.  There were times when I’d  get a taxi home after being out for just ten minutes.  I quickly became lonely and found myself retreating into a very dismal space.  Often I would lament the loss of my books and my academic career, and wonder why something which I loved so much had been snatched away from me.  These were the bleakest moments.

Training with a guide dog was something I had considered within months of losing my sight.  However, I needed to regain my confidence before I could manage a dog.  I knew that a guide dog was right for me, and GDBA have been a tremendous support ever since I first contacted them in 1993.  This support included hours and hours of mobility training and traffic skills training over a long period.

15 years later, in 2008, I experienced the happiest day of my life when I was matched with Trudy.  Trudy was worth waiting for.   At the time I was living  in residential care, and the outside world was a terrifying tangle of sounds and unfriendly people, and obstacles which rammed into your face and sent you sprawling on the ground.  But Trudy has shown me another side to the world.  Guide dogs attract people, so I suddenly found myself surrounded by well-wishers and dog-lovers.   The obstacles melted away into the background as Trudy’s job is to steer me round them.  I became eager to explore what I’d been missing for so long.  My blindness became an acquaintance rather than an enemy.

Three years later I am living in my own flat and giving talks to schoolchildren and adult groups.  I am about to begin lecturing at a local University.  Sometimes I look back over the rocky road and wonder how I got here.  It’s been worth the blood and tears just to feel this freedom.  But a guide dog isn’t the answer for everyone.  There are 4,500 guide dog owners in the UK.  But 180,000 blind and partially sighted people never leave home alone.  Not long ago, I was one of them.  .

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