Posts, page 5

I’ve heard it so often that it shouldn’t still bother me, but it does.

“Oh, so you’re not completely blind then?”

As if somehow this makes the ordeal of sight loss so much better.

I’m tempted to reply; “Oh, do you think zombies feel happier knowing they’re not completely dead?”; but instead find myself explaining, for the umpteenth time, that, like 97% of those registered blind in the UK, I have a little, residual vision – vision that fluctuates depending on how bright it is, or how tired I am.

Worse though is the incredulity I’m met with as a blind person doing anything visual.  Notwithstanding my pebble-thick reading glasses and the array of light-emitting electronics I carry, I’ve been made to feel that a blind man trying to use his eyes is a fraud.

Not that the word “blind” discourages stereotypes.  Quite apart from its pejorative association with naïve or wilful ignorance, its very definition confers the total inability to see on all those it describes.

The alternatives aren’t much better: “partially sighted” or the archaic “purblind” simply don’t cut the mustard.  And the more modern “visually impaired” rings hollow with the embarrassment of whichever committee first coined it.

And to add bureaucratic insult to injury its two subsections – “sight impaired” and “severely sight impaired” reinforce the impression that sight loss needn’t be regarded as serious until it reaches a certain level.

I’ll confess I was amused the first few times I heard myself described as a VIP, or visually impaired person.  But the happy coincidence of dual meaning has worn thin, becoming as predictable as comments about my lack of complete blindness.

So I’m asking listeners to help compile a new lexicon of meaningful words to describe how we want our sight loss to be seen.

To start the ball rolling I’m proposing “occluded” – meaning obstructed, particularly in terms of an aperture.  It sounds a bit like “ocular”, making you think of the eye, and sits somewhere between included and excluded, reflecting how many of us feel.  In meteorology an occluded front is formed when a cold front overtakes a warm one, often causing unsettled conditions.

Now there’s something I can relate to!

2016 has been another busy year of touring the country with the story of The Blind Man of Hoy. From The Edinburgh International Book Festival to The Petworth Literary Weekend, via disability awareness symposia and broadcast round table discussions I have been delighted to find audiences full of people eager to hear a blind person’s perspective on the world and keen to build a more inclusive society in which those with disabilities can take a full and active part.

It was the ‘can do’ spirit of the London 2012 Paralympics that got me off the sofa and convinced others I could climb The Old Man of Hoy.  Just as in London the extraordinary success of Team GB Paralympians like Steve Bate, in Rio this year has caught the public imagination, encouraging people to look beyond the disability and focus on the individual; to see us as differently-abled not dis-abled; dented not written off.

It is vital that we act on this, not just from an equal rights point of view, but for our own physical and mental wellbeing.  With a recent study reporting that over 40% of Blind & Visually Impaired (BVI) people suffer from mental health problems (myself included) and bearing in mind the well-documented link between physical inactivity and depression – it is clear that the mobility issues and low expectations associated with sight loss create a toxic cocktail.  While it may work for some, there needs to be an alternative to the traditional model of passive stoicism.

So next year I will carry on beating the drum for active involvement by BVI people.  Not only do we need to be visible but we need to show people what we can do and how they can help us do it better.  With this in mind I am preparing a TED talk aimed specifically at secondary schools that examines perceptions of disability and the need to focus on what you can achieve rather than seeing only what might have been.

In between the book talks and tub-thumping I have tried to keep active with regular climbing and wildwater swimming trips (including a hypothermic attempt to become the first blind swimmer to complete the Henley Classic Thames swim) and a much more successful white-water rafting expedition down The Grand Canyon.

Having just returned from a bruising climbing trip to the white limestone cliffs of Southern Sardinia it is time to plan new challenges for next year and to devote some time to my (rather neglected) next book: a spooky, cautionary tale about a middle-aged couple who abandon their metropolitan life to live the rural dream in Dorset.  Provisionally titled The Darkening World of Arthur Rouse.

I am also taking bookings for next year so should you wish me to speak at your literary festival, school, university, bookshop, library, climbing club or WI please do not hesitate to contact me via my publisher (keara@sandstonepress.com) or through the contact link on this website.

Red talks with triple Paralympic medallist Steve Bate about cycling, climbing and focussing on what you can achieve rather than on what Retinitis Pigmentosa has taken from you.

I am delighted to announce that the owners of The Arch Climbing Walls have kindly offered to let me do all my training at their excellent facilities. With winter approaching and the outdoor rock climbing season coming to an end what better way to maintain your hard-won climbing fitness and work on technique than with regular bouldering sessions?  Read how my eyes were opened to the benefits of bouldering as I prepared to climb The Old Man of Hoy back in 2013.

http://www.archclimbingwall.com/journal/2016/11/2/training-for-trad

It would seem that all-out war has been declared on New End.  The levels of noise and destruction, of heavy machinery and boots on the ground certainly indicate that an army of occupation has moved in.

The old nurse’s home has been reduced to rubble, the road closed for at least six weeks, The White Bear (a registered community asset) remains boarded up and all for what?  The construction of more yuppy homes hiding behind iron gates.

Oh and then there’s the closure of East Heath road so that some oligarch can have the wall to his big house rebuilt (will he use the opportunity to put razor wire and glass on top of it?).  One man’s whim causing chaos for everyone else and pumping traffic and pollution through Hampstead’s narrow backstreets.  Oh and then there are all the basements being constructed not to mention the Chinese lions that have taken up residence in Gayton Road! What is going on?!

When I moved here back in the 1990s it was to enjoy the village life I’d grown up with in rural West Sussex amid the amenities and vibrancy of London.  Hampstead was a happy mix of those who’d been born and brought up here, those who worked in the area, those just passing through and those who like me fell in love with it’s laid-back vibe the moment we stepped off the 46 bus. What I remember from then is the diversity of ages and backgrounds I found among my neighbours and people’s willingness to stop and chat as they meandered down its quiet, leafy streets.  There was a genuinely vibrant sense of community.

Nowadays you’re lucky if you can hear yourself speak above the screech of drills and pounding of pile drivers, let alone breathe for all the brick dust and diesel fumes.  A trip to the mini-market in New End is like a game of Frogger with skip lorries, and any health benefits I might have got by given up smoking are choked off by the unacceptable levels of man-made pollution.

And I repeat, what’s it all for?  A handful of luxury flats that only fat cats can preen themselves in, with a subterranean carpark for their oversized ego carriers and a gym so that they don’t have to mix with the hoi-polloi at any of the local amenities.  

And who benefits.  Neither the casual visitor hoping to enjoy the tranquillity of this historic area, nor the shop-keepers who depend upon their passing trade.  And certainly not us.  Not the resident population who ho love the tree-lined, sleepy old Hampstead and appreciated the fact that the nurses in our local hospital had a place to live in our community, that our firemen didn’t have to drive down from Milton Keynes every morning because they can’t afford to live in the area, that our shop workers didn’t lose their first two hours wages each day to the cost of commuting in to work.  They alas have all been driven out like so many red squirrels by the rapacious greed of property developers who are turning Hampstead into a habitat for an acquisitive, non-native species of grey squirrels who view property not as a home but an investment to be capitalised on.

Hampstead feels less and less like home with every square foot that gets tossed into the skip of memory.  I realise that we live in a conservation and not a preservation area, but no place should ever become the preserve of a narrow section of society.  Sometimes it feels like the rapine development of Hampstead into an area of gated communities and subterranean bunkers has been designed by its architects to be as noisy and unpleasant as possible (the US Army employs much the same tactics to achieve its ends).

So next time a skip lorry laden with New End spoil threatens to crush you into the pavement, or your throat and eyes burn with brick dust and you head throbs to the percussion of jack-hammers, ask yourself just what is being demolished here, a few old buildings or is a community being deliberately besieged?

BBC Radio 4 ‘In Touch’ – Guide Dogs (11th Oct 2016)

To celebrate the recording of ‘The Blind Man of Hoy’ by the RNIB Talking Books Library, I was invited to speak to a packed audience at the Festival. The event was recorded live and broadcast on RNIB Connect Radio.

You can listen to or download by clicking on the link below and looking for The Edinburgh Book Festival episode.

http://www.insightradio.co.uk/read-on.html#.V_Ew9ju1vdl

People have started ignoring me, giving me a wide berth when I approach and those who do stop to talk show little interest in me.

Take the day-before-yesterday.  Harness in hand I let the guide-dog lead me to The Wells for an ale and a burger.

Anna, the lovely manager, threw open the door in welcome.

“You’re back!  I have missed you so much. Oh yes, you are beautiful!”

I beamed.  I’d only been away a few days but returned to desiccated houseplants, a bevy of bills and the cat’s dirty protests at my absence.  Now, at last, I was being welcomed home properly.

“Oh Ella, you are adorable!  Shall I get your usual bowl of water and maybe a little something else?”  Then, turning to me, Anna said, “And it is nice to see you too.”

Crestfallen I recognised my destiny is to play second fiddle to my recently-acquired guide-hound, even down the pub!  I needed a drink but Anna had nipped off to fetch Ella’s water so I sulked instead.

It’s bad enough surrendering independent locomotion to an (admittedly not-so-dumb) animal, but discovering that my Labrador has more allure than me, well that takes the biscuit!  No wonder Churchill called his bouts of depression his ‘black dog’!

Once Ella has been settled with her bowl of water and a dog biscuit (that I suspect Anna paid for out of her own pocket) I order my pint and burger.

This dog really has wasted no time in getting her paws firmly under my table.  In the space of a month since her arrival she has charmed my wife and daughters and proved herself adept at guiding me to and from all my local haunts.  My journeys with her are safer than they were with a white cane.  She steers me round obstacles.  And people make way for us.  But it’s her that they notice.  Her puppy-dog eyes and skew-whiff ears seduce all who clap their mincers on her.  Truly she is a seeing-eye dog!

Is this why I alone seem immune to her charms; because I can’t see that she’s adorable?  Don’t get me wrong.  I do appreciate my waggy-tailed familiar.  She dotes on me, is always eager to get into harness and lead me wherever I want to go (especially if there’s the prospect of food there) and she is beautifully behaved.  But love her?  Nah!

Maybe I am being a little dog-in-a-manger about this.  My pint arrives and Ella lifts her head to check I’m okay, licks my sleeve and lets her ears flop back down onto my feet.  A passer-by asks if he can stroke her.  I should say no he can’t, not while she’s on-duty but she’s already standing up, tail wagging and I find myself feeling guilty for denying her the attention.  Oh god, am I susceptible too?  Is the dog I only accepted as a working animal destined to become a pet?

“Hello gorgeous.”  My friend Hannah slides in to sit opposite me, and Ella’s up again having her ears tickled, dominating Hannah’s attention for the next five minutes.

“You know dogs are the perfect communist citizens” she tells me.  “They respect rigid rules and hierarchy.  And, so long as they get a modicum of food, shelter and the hope of reward they will work tirelessly and without complaint for their masters.”

The Guide Dog Association said pretty much the same.  “Ella’s trained to work for you, don’t spoil her.”  “I’ve got no problem with that” I tell Hannah who’s fondling Ella’s neck, “but with the liberal amount of affection everyone gives that particular worker, I fear for her efficiency.”

“And,” I might have added, “I resent the assumption that I too should welcome this addition to my life.  I’ve never wanted a dog or the sight-loss that necessitated me getting one.  It’s like opening your heart to a pacemaker.

Later, after half the pub, including an amorous Irish wolfhound has said goodbye to Ella, I head home; Ella walking stalwartly ahead, alert and confident, me straining to put complete trust in her.

We stop at the corner outside Burgh House and, after cocking a cursory ear for traffic, I urge her to cross the road to Flask Walk.

The bloody dog refuses to budge and, as I growl at her to wake up, silent death in the form of an electric car hurtles past our noses, ignores the one-way signs and plunges down Willow Road.

With a newfound respect for my good and faithful servant and a glow of affection I let her lead me home.

BBC Radio 4 ‘In Touch’ – blind people on stage, film, and TV (5th July 2016)

I don’t see myself represented on TV.

Despite the much-vaunted policies announced by the BBC and Channel 4 to quadruple on-screen representation of disabled people by 2017, there is still scarcely a white cane or guide dog on telly.

With 2 million Blind and Visually Impaired (BVI) people in the UK 1-in-35 characters in TV drama should have sight problems.  I struggle to name 35 in total!

And even they are rarely representative.  Blind women are stricken victims, blind men either easily conned, or sonically superpowered.   And invariably all are totally sightless, unlike 97% of the BVI population.  No wonder the viewing public struggles to see the nuances of sight loss.

One notable exception is Rudi in CBeebies’ Me Too, played by actor Chris McCausland, who like me has Retinitis Pigmentosa.    When my kids were little the presence in this popular show of another man who uses a white cane but is otherwise perfectly ordinary went a long way to making them and their friends more comfortable with my disability.

Alas this was not what the writers of Emmerdale had in mind when in 2009 it became the first British soap to include a blind actor in a major role, with Kitty McGeever playing Lizzie Lakely.  From the outset the focus was on the negative aspects of Lizzie’s character for which her (total) blindness acted both as cause and excuse.

Has so little changed since the days of Blind Pugh?  Isn’t it about time our television screen reflected the world it claims to represent?  I want to see characters with varying degrees of sight loss in every drama and reality show.  They and their blindness don’t have to be central to the plot – we do have other facets to our character.

It’s not rocket science.  The writers of The Archers have been dropping farming tips and news into their soap for decades, and recently even managed to include a storyline about cataracts.

An example of what can and should be happening appeared in Series 2 of Broadchurch last year.  The prosecuting barrister had AMD, which made her reluctant to take the case and meant she needed someone to read for her.

So, if the writers of EastEnders are listening here’s what I want to see:

Phil Mitchell notices Dot struggling to find her way across the bar of The Queen Vic (actress June Brown is actually losing her sight).  In his gruff way he grabs her arm to steer her.  She retorts, “Get orf me!  If I want help I’ll ask for it.  And when I do I don’t want to be dragged along like a trolley bag.  The proper way to guide a person is by the elbow, like this.”

An everyday occurrence reflected in 20 seconds of public service broadcasting that raises awareness and is representative – job done!   Who knows, with a bit of variation and enough repetition in other programmes, the message might get through!