Running away from 40

Ok, so this might be an all to obvious subject to talk about to some of my friends but I thought I’d blog about how, as a totally blind person I go running without ending myself or others.

 

I wonder, is guiding a blind runner the thrill seekers answer to sighted guiding?  A sort of Formula 1 or premier league in sighted guiding if you will.

 

Your reactions have to be faster, your decision making time is shorter and if you get it wrong, the consequences are usually worse with one or other of you on the ground with, at the very least, skinned hands, torn tracky bottoms and, at least, a very bruised ego.

 

The other day I was pondering my refound love of running and why, after my most recent spell of doing absolutely no exercise, I’ve now got back to it.  I think this latest hankering to run is all about trying to recapture my youth ahead of my 40th birthday in November.

 

Maybe I’m running away from middle age?  Well I’m not getting any younger and that to stave off the onward march of weight gain, achy joints and couch potatoism, I have to do something, I suppose.  When you think about it, it’s free.  You can burn a lot of fat, achieve a lot of heavy breathing and lose a lot of sweat very quickly.  Afterwards, you are usually left in no doubt that, yep, you have indeed been engaged in some sort of physical exercise and that your legs will remind you of this tomorrow when you try going up some stairs.

 

It’s good for the mind too.  It’s as if my body runs on auto-pilot and my brain is free to sort through some boxes that have been cluttering up the place.
There’s also the battle you wage with yourself as you sweat your way through mile after mile and week after week but gradually, despite all your negative head traffic, it pays off.  One day you suddenly realise that your fitness level has now surpassed your attention span and you’re making progress because you can now successfully bore yourself running.

 

Running when you can see feck all

 

In short, I can run in the gym on a tread mill by myself.  Presuming I can get the thing going without sighted assistance.  A lot of gyms now-a-days are waking up to being accessible to people with a disability.  Good work, it’s only 2017.

 

This is a game changer for me as I’m used to frantically feeling around for buttons on a completely featureless touch screen for Eleventy minutes before hunting a member of staff to make the thing move.  But as most runners will testify, running on the tread, or dread mill, just doesn’t cut it – it’s always better out in the open air.

 

For this, I need the expert piloting skills of my guide runner Dervla.

It’s Dervla’s job to run beside me, either side will do and basically steer, keep track of our mileage with her fancy phone app and talk to me – or sometimes herself, if I’m too out of breath to speak.

 

It’s my job to respond to her directions, make this as difficult as possible and ask plenty of annoying questions about where we are and how far is that now?

 

Unlike in walkity guiding, I don’t hold Dervla’s elbow.  We use a guide rope which can be made of anything really as long as it isn’t elastic or stretchy.  The idea being that Dervla holds one end, I hold the other and that both our arms are free to move independently for, as Kate Bush put it, “running up that hill.”

As a basic rule of thumb, I’d suggest the guide runner stays about  half a stride in front.  Let’s face it, there would be little point in me being in front now would there?

 

By keeping a minimum tension through the rope, I can feel and respond to any direction changes from Dervla.  Of course, nothing beats just giving verbal instructions as we go.  Yep you guessed it, “left a bit” “right a bit” “right a bit more” “I said go right!” and my personal favourite “STOP!”

 

Five things that drive me mad when running

 

  1. Dogs off the lead (we know chasing things is absolutely why you were put here, it’s great, we know but go away)
  2. Kids on bikes that steer randomly in to your path (careful there’s a 6ft 2 blind man attached to a smaller person hurtling towards you and we aren’t great at stopping)
  3. Walkers who won’t move aside even though we tried to say, “excuse me!” (we’re faster than you and we’ll be out of your airspace in a second)
  4. Cyclists (you kings and queens of the road/path/any surface known to man really, use your bell, it won’t hurt)
  5. Cars parked on pavements (Really, all four wheels? Don’t do it people, you’ll realise one day).

 

I’ve been asked how or where do you train to be a guide runner and there are organisations who offer this training but, in truth, I’ve never ran with anyone who received any actual formal training at all.  You can ask Dervla but when we first went out running, I just said grab the rope, keep going and just let me know what’s coming up.

It really is all about getting to know one another as runners.  It obviously will work better if you’re compatible in terms of speed and running gate.
It’s a partnership and if you run enough together, you’ll both react as a team and hopefully no one need limp home whilst thinking up a much more heroic sounding tale than “I tripped over my own self whilst out running, now have a bleeding face and look like I was street fighting with an angry stapler.”

 

Thanks for reading.  Yes, I know, another long one!

Remember, don’t trust it!

 

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The odd crumb of progress from the table of the already equal?

Disability does not run in the same race to equality as, say, gender equality, age equality or sexual orientation equality?  Ouch!!!
Before closing this window in total and utter discust, please read on and let me explain?
DISABILiTY
Let’s face it, starting any word with ‘DIS’ and it’s seldom a good thing?

When I use that word, either as a noun or an adjective, so begins an interesting inner conflict.

“But we need a word or way to describe things,” I hear you cry. Yes, but in classification and putting things in boxes, so begins the journey to inequality – not all boxes are treated equal by the great forklift of life.

I’m testing out this belief that I’m not actually disabled, It’s society around me that understands my lack of eyesight as a problem or barrier to stuff.

How can I hold this belief? If I do, surely I must know that I can’t go around blaming everyone else for the challenges I face in real life.

Really if you look at it, am I just refusing to accept a truth obvious to everyone but me, and unless we turn every light out, break open the bumper pack of white canes and halt the march of progress, it makes no sense.

;

But I believe, with a big brave attitude shift, time and resources could be channelled in a different way. It doesn’t take a major leap; it just takes those with influence and with their fingers knotted in the purse-strings of power to stop just saying DDA (Disability Discrimination Act) over and over again in meetings and to just get on with it! It’s time we stopped contenting ourselves with the odd crumb of apparent progress from the table of the already-equal.

I’m blind and have been so for 35 years now. I lost my sight at the age of five from complications or something to do with congenital glaucoma.

So as a blind man living and working in Belfast, what do I think represents inequality in my life today?

 

Inequality is telling four blind school leavers that, according to statistics, unlike your sighted peers, only one of you will get a job.

 

Inequality is showing a blind person 100 published books and then saying “but you can only read seven of these”.

 

Inequality is the fact that here we are in 2017 and people who can’t see too well are still denied even basic literature in a form they can read independently, either from our health and social care service, Social Security Agency or electoral process and political partys.

In my opinion, as a society we’re trapped in a hamster wheel of providing the most, to the most, for the most – telling ourselves that there’s nothing to be done and that’s just the way the world works.

It’s apparent to me that the great big untidy, messy world of disability does not share the same access to potential equality as, say, gender equality, age equality or sexual orientation equality. Now don’t get me wrong, it’s all vital and I’m not the one saying that one fight for equal rights should be prioritised over another. I can only talk from my point of view and I only know what I know.

We’re still in the midst of viewing disability through medical-tinted glasses. People with disabilities are to be cared for more than made equal. One flick through the most recent ill-fated Daft Programme for Government told its own story.

If we ever get another working Northern Ireland Assembly, maybe we’ll get one of them there ministers for disability and all will be well?

Growing up, it took me a long time to finally realise that a lot of perceived inequality is in the eye of the beholder, pun intended. I remember the peace I felt the day the penny dropped that I was the master of my own outlook, and that you can choose how you feel and whether you let the inequality and conscious or unconscious descrimination that’s buffeting you from outside, inside.

Thanks for reading.  I’d be interested to know what you think?

Remember, don’t trust it!

We don’t need no education? Or Trouble with bubbles!

This blog is my attempt to write down what I feel about my journey through specialist education in Northern Ireland during the 1980s and 90s, it’s my opinion.  Has it changed much now?  Please comment below and tell me.

 

The band Pink Floyd sang, “We don’t need no education!” Uh, the thing is we do – we need much better education and we need it yesterday!

 

I believe my time in formal education was at least three years too long because I was blind.

 

I have many fond memories of school. I felt secure but it was a world apart, a pocket, a strange little bubble of technology and expertise in educating children with sight loss, an insular bubble of low academic attainment but, to the over 100 students attending the school, the only bubble we knew and one of the only two places in Ireland that could teach kids who couldn’t see too well.

 

Then, one day in June 1995, the bubble burst, the gates opened and I was let loose on the outside world.

 

I left Jordanstown school for children who had sight or hearing loss, at the age of 17, with only six GCSEs and not much of a clue of how the real world worked or where I fitted in.

 

I remember wondering why family and friends of a similar age were talking about their 10 or 11 GCSEs and the fact that, at 17 when I was finishing, everyone else was half way through their A Levels or already starting work. Long after my school years when it dawned on me just how low the level of academic expectation had been.

 

My sight was lost aged five, due to complications from congenital Glaucoma. Back then, in the early 1980s, a local mainstream school simply couldn’t cope with a child who was blind or who had poor sight.

 

My remaining memories of P1 involve me sitting in the corner under a bright lamp, away from the rest of the class, tracing shapes in a book with a really thick crayon. During that year, I developed an eye infection and lost my sight – more or less overnight – in the Royal Victoria Hospital.

 

Specialist schooling

 

I cannot recall the days, weeks and months after that. My next real memory is of my first day at Jordanstown School, what would’ve been my P2 year. It was then that my education really began. I was five and a half.

 

I learnt to read and write using braille and the soundtrack to my school years is of five or six Perkins Braillers, in a class of eight or nine, clattering and thundering their way through the school curriculum hour after hour.

 

As I look back on it now, I might be critical of my level of education and the lack of academic achievement but it was still my school. Those were my school days and that’s my history.

 

It was there I learnt to read and write. I made life long friends. It was there I had my first kiss, formed my first ill-informed opinions about the world around me and rebelled against my first perceived injustice. But, more than any of that, it was there I found my love of music and was allowed the time and encouragement to explore it.

 

I’ve spent a long time thinking about the rights and wrongs of educating children with a disability in a specialist education setting. Whilst I’m not an educationalist, I speak as someone who lived through it and more or less survived.

 

On the one hand you have a school specialising in teaching kids with a particular disability and surely, to give a child the best chance of succeeding and achieving and being a well adjusted adult, that makes a lot of sense.

 

On the other hand, allowing a child with sight loss to live and learn in their local mainstream school surrounded by family, friends and neighbours still feels like the right thing to do and where we should be putting our time and resources.

 

So, why can’t we make it work all the time, and for every child? Somehow, educating a child with sight loss in a mainstream school still seems like a gamble to me. Yes, it might work in some cases and I’ve seen with my own eyes (pun intended) examples of this – but it’s by no means a dead-cert. Plus, let’s be honest, kids can be cruel sometimes. Plenty still must be done to educate our young peple not to view difference as something to be feared and therefore attacked.

 

Boarding

 

For 12 out of the first 17 years of my life, I boarded at my school from Sunday to Friday and so missed an awful lot of time at home. I know it was particularly hard for my parents. Amongst some now-buried emotional weirdness I’ve surely carried with me, I didn’t really make any friends at home as I was seldom there, except at weekends and holidays. I was the kid who would sit in his room and either listen to my talking books or just play guitar.

 

It has left me with the unshakable belief that bording schools can never be a good thing. That is just my opinion and I’m not judging families that still have to do it. It did affect me and it was only in later life, that I would learn just how much.

 

My love/hate relationship with specialist education didn’t stop when I left Jordanstown School in 1995. From there I went to the Royal National College for the Blind (RNC College) in Hereford.

 

It was my final year at school and we had chosen our individual paths to the future. I was set to go on to do A Levels. One spring morning a tutor from the RNC and I spoke over the phone and they simply asked what actually did I want to do. I said, “Play music, record music…. Just music.” It just so happened that they ran a BTEC course in Music Production and that was that, I knew where I was headed – Hereford, in England, to play with mixing desks, microphones and more bubbles.

 

I spent three years there doing a course that really should’ve taken two. Again, I loved every minute of it and even managed to do some work. Don’t ask me how, or why, but back then local Education and Library Boards paid for your time in one of the six specialist further/higher education colleges, all of which were based in England. Everything was paid for, including travel, food and board.

 

Barriers

 

After the RNC I left for Leeds Metropolitan University and then on to Leeds College of Music, where I spent another three years doing something that should’ve only taken two, and I’d formed the opinion that we, visually impaired school leavers, had been treated a bit like mushrooms – kept in the dark and fed s**t.

 

Like so many others before and after me, I was told about Disability Student services in every college or uni and the money available to purchase equipment to level the playing field. But, in my experience, equipment arrived after months of endless meetings, form filling, and everyone practicing their best sincerity, before not really tackling the problem. The same old attitudes, inflexibility and genuine ignorance that were the real barriers.

 

One stand out incident is this: in my first year of a degree course at Leeds Met a tutor, exasperated at how he wasn’t able to translate the course material into an accessible format for me, simply gave me a pass in a module so I would pass the year.

 

I’m not proud of that but it proved a point to me. I never finished that course, preferring instead to transfer to Leeds College of Music which was an altogether better experience. The college was much smaller, everyone under one roof, and by then I’d grown a bit wiser and knew what to ask for and, more importantly, who to ask.

 

Lessons learned

 

To my untrained eye – even now – education of children and young people with sight loss is patchy, inconsistent and, for the most part, still an experiment.

 

Is it mainstream? Is it specialist? Is it a mainstream specialist mix? In my opinion no one seems to know for sure but the emerging young adults, their families and of course the teachers can all testify to the real lived experience and not some hypothetical theory or lofty hope by the great and good in educational provision.

 

Whilst we’re grinding axes, our collective common sense, personal testimony and years of gathered evidence is still thwarted by a civil service with yet another insufficient budget for a big old list of priorities that, to me, has reform of specialist education written in crayon at the bottom.

 

I think if I had to summarise what I think it would be something like: a system that doesn’t really work, propelled ever forward by people who really do!

 

Pink Floyd also sang, “All in all it’s just another brick in the wall.”

 

Our expectations and our future outlook are absolutely shaped by those early years. If we want our adults of tomorrow to be well adjusted, outward looking, go-getters then surely by now we should have realised the benefits of inclusive education. Every time a child is treated differently or forced to take a separate path or is told, “No you can’t,” because of their disability, another brick is added to that wall and when they grow up, climbing back over that wall can be tricky, sometimes impossible.

 

You don’t get a second crack at school. Yes, you can go back to education in later life, I myself know the feeling of snatching an hour here and there to do some assignment after the kids are in bed. School is so much more than academic achievement. It’s where a little person learns to be a big person and to stop chasing bubbles.

 

Thanks for reading to the end, I know it was a long one.

 

Shining a light on parenting in the dark

Shining a light on pparenting in the dark

 

What do you mean I’ve got poo on my forehead?

 

Without a doubt the births of my three kids were occasions I’ll hold deep down dear forever.  I remember as if it were yesterday that overwhelming indescribable feeling of wordless joy, relief and a hint of “What am I meant to do now, where’s the instructions,”

When the midwife handed me a towel-wrapped bundle of perfectness just minutes after she/he greeted the world, still brings a tear even now sitting here writing about it months on.

 

I did laugh however at the birth of Oisin the most recent, when the midwife said “It’s a boy, I think I’ll cut the cord if you don’t mind encase you cut the wrong dangly bit.”

 

The memories of Life changing moments like those are somehow more colourful, more vivid than anything else and still loaded with the emotions I first felt even though time has done its best to march on.

 

I think in that moment when your son or daughter is passed to you, you make a vow that, come what may, whatever life throws, you will look after this mini person and never let harm come their way.

 

So why then doesn’t this society we all share, all have a equal stake in, have such a difficulty in remembering to include a parent with little or no sight?

The health care service, the education system and many other must do, need to, we’re watching you, facetted of society fail so desperately at keeping their end of the bargain to me, a blind parent or indeed any parent with less than perfect vision, for that matter.

 

It astounds me that here we are in 2017 and still, a woman who’s blind or can’t see too well, isn’t even able to read a pregnancy test without sighted assistance?

a job you’d agree, best done in private and made even more tricky if your partner can’t see either?

 

What about when I have to give one of the kid’s medicine?  Try measuring out 2.5ml with your eyes closed and knowing that getting it wrong could be dangerous.

 

What about making up formula milk for baby feeds.  I’ve had to devise an overly complicated system and even then I’m never 100 percent sure it’s spot on.

 

Yes, I know there are items of equipment that talk and do all sorts of things that can help with accessing daily tasks like this but who promotes them?  They’re usually expensive and quite often aren’t as reliable as their mainstream equivalent.  And above all else, the post birth health and social care system, the team of mid-wives and Health Visitors that are there to be a support network, know nothing of these or the thousand other little ways you have to learn, to cope with parental tasks when you can’t see.

 

Even the sight loss charity sector does little or nothing for parents with sight loss.

 

I believe it’s foolish to only blame the service that doesn’t provide.  I believe Visually Impaired parents are a silent group who, on the most part, are reluctant to speak out and say.  “I find this difficult” or “I can’t really get to that place,” or “I can’t find any information about local services in a way that helps me,” or “I’m struggling with getting my child to and from school.”

 

We can all relate to that feeling of not wanting to look like you can’t cope and there’s pressure on parents to be seen to be breezing through motherhood or fatherhood for fear of the dreaded eye of scrutiny.

 

It’s interesting to dwell on for a moment that, to create a life doesn’t take sight, to feed your baby doesn’t take sight, to love and care for your son or daughter doesn’t take sight but to avail of mainstream support services does and you’d better get used to it because there’s an entire rain forest of health care and safe-guarding literature coming your way and guess what?  Yes, it’s all in tiny, low contrast print text – with pictures!!!

 

Come on, we’ve been having children from day zero and it amazes me that in these days of rights and even equal rights, whatever they are, I can honestly say that I’ve never felt more unequal than when engaging with health and social care services.

 

“Hello everyone and welcome to your parent-craft classes. We’ve lots of useful information for you parents to be.”

 

Can I have that in braille or large print? Uh, No,

Is it online? Uh, No, Yes, I don’t know I’ll hand write this link on a scrap of paper and you can lose it on the way home, that ok?

Is that film you’re showing there audio described?  Hmmm, uh, no I’m afraid not.

Can you email me or text me the details? Em, what? Yes, but then I’ll not be working this clinic again and there’s no system to record your needs so a colleague might carry it on.

 

Please don’t misunderstand me, the staff working at the front line of the health services I and my partner have encountered are wonderful.  More dedicated professional and compassionate men and women you could not hope to meet.

 

They too must know.  They see all sorts of people each and every day and so they see and hear what it’s like to not be able to access a support service that can’t cope with you if you find yourself outside the mainstream.  Is it the service managers? Is it the civil service powers that be or is it all of us that can’t or won’t stand up and tell it like it is and just say enough is enough?

 

The beauty of it all is that, to bring a new life in to the world and be present as he or she takes their first breath and that wash of emotion and conviction had nothing to do with braille or large print or my visual acuity.  My new born son or daughter never asked can I support myself or how much I earn or DLA/PIP.  It’s quite simply nature at its mighty uncompromising best and here I am a blind man, who apologises to empty seats on the bus, who once went out of the house with two odd shoes on and quite often opens multiple tins of chopped tomatoes in search of the one allusive tin of beans left in the cupboard, guess what, I’m a dad and I have little people that rely on me!

 

Why is it that I only feel inadequate when I encounter ‘THE SYSTEM’ surely there’s a lesson here.  I’m blind, there’s no getting away from that but caring for and communicating with my children isn’t a problem when it’s just us.  Try reaching out and availing of a service or two and suddenly I’m met with can’t dos and “well couldn’t someone at home read that to you.”

 

The governments make a lot of noise these days about the hallowed Disability Discrimination Act and equal access for all.  It’s a joke, it’s a form of words used as a tick box and away of securing funding.  It takes more than saying the letters DDA it takes an entire attitude change and re-education of service providers and those with the country’s purse strings knotted tightly in their hands and we aren’t there yet folks. It still isn’t working the way we’re led to believe.

 

In the early years I worried that I wouldn’t be able to cope with the basic stuff or that my kids would somehow go without because I was blind.  Of course, I now know this to be nonsense but everyday we’re surrounded by reminders of what we should be doing with our kids, according to popular culture and the unending bombardment of things to compare our lives to.  It’s only when you really decide to stop listening to that and only worry about the here, the now and the bit you can control that your life becomes simpler.

 

Yes I do worry about the kids growing up and protecting them from cuts and scrapes and the ugly bits of life or making sure they receive everything they need to reach their potential.  And yes I’m not sure how I’m going to ward off the marauding mob of bullying, Paedophilic, joyriders with drug dealing tendencies that are surely lurking around the corner any day now.

 

Must go, Oisin needs changing.  My partner is fed up with telling me to remember to switch on the bedroom light for the baby at night when I’m changing him.  I just tell her it’s character building and he’ll thank me when he’s older.  His hearing will be great!

 

Thanks for reading.

I am the music man, I come from down your way and I can play?

As I crawled out from under the grand piano, banging my head in the process, I stood up and brushed years of  floor fluff from myself, I was in a reflective mood.

It was   Saturday night and I’d just finished setting up my gear before playing in a local bar.

I love it!  I’ve been doing this gigging thing for over 20 years now and haven’t yet worked out how to stop.

Is it lucrative? No, not really.
Does it further a   career in music? Nope, but if you’re good hopefully they’ll call you more than you   call them.
Does it make me feel good? Yes, yes it does and that’s what I wanted to write about here.

Let’s deal with some of the facts.  I’m totally blind and gig regularly in any venue that books me really.  I get from A to B thanks to a few loyal taxi drivers who know me well and know the craic.  I set up my own equipment and when I say “no, I don’t need a hand, I’m fine” I mean this in the nicest possible way.  I’ve my own ways of doing things and usually helpful people helping doesn’t help.

I’ve just realised I haven’t said what I actually do.  I sing and songs and play guitar.  acoustic covers of chart stuff usually with a good proportion of my set being Irish Folk songs or songs that aren’t Irish or folk, that sound Irish and Folkky.  More recently I’ve started to write my own material and am finding this very satisfying but I don’t give enough time to it and this does trouble me.  There’s just not enough hours to go round.
You can take a listen to some stuff I’ve recorded over on Sound Cloud if you like.

 

I’m under no illusion, playing endless gigs in local bars doesn’t lead to bags of cash or a glamorous celebrity life style but I think I’m addicted to the   buzz, the endless problem solving and meeting people.   People are great!  You do meet the odd ejit who is determined to tell me three things, two more times, before   Dropping One enormous Guinness fart but, by a long way, people are cool and simply appreciate live music and that I seem to be sweating more than they are right now.

Don’t get me wrong, I’m a glass at least half full kind of guy but I remember when the realisation hit me that no matter how many gigs you do in a year, you’ll be no further on than when you started really.  Yes, you’ll have hopefully learnt more about yourself as a singer or musician but to the audience, it’s always the first time they’ve heard you and even though you might have played there 37 times before, nobody really remembers and always forget in the morning.

To me, playing music has always felt like mine.  It’s something I started to do in my teenage years, realised I wasn’t bad at it and kept on exploring in my own way.

Somehow, even though I can’t see a thing, getting out in front of people, some bananas drunk, has never daunted me and something I’ve come to measure myself by.  The day I feel I can’t do this, feels like a bad day.  Maybe that’s it, now I’ve created this persona and if I let it go, it’ll mean the end of something.

I’ve made amazing friends and connections through music.  I’ve had some fantastic experiences too, the best of which I probably couldn’t write here for fear of legal proceedings but on a serious note though, I think it’s the fact that I was in control of it that makes it such a rewarding way to earn a few quid.  Before I started my current day job, I suppose gigging was my main source of income for a while.  And it worked.  If you put the time in, then you get the money out but it’s a hard way of life especially if you’re balancing family life or a relationship with a better half.  Plus, watch the drinking, as I don’t drive, obviously, I’m free to drink as much as I want.  I try and stick to the three pint rule though, it’s ok to have just three pints, that doesn’t affect my singing or playing and I should be ok for the toilet breaks.

Speaking of toilets, not being able to see and having to find my own way to the gentlemen’s facilities in a new venue is a bit of a pain in the arse.  When a venue has booked you to play a gig, it seems somehow wrong to then have to ask the bar staff for assistance to go for a wee or Is that just me?

Singing and playing guitar for me, is cathartic.  That’s really the only reason I do it.  Believe it or not, there is a zone and when you’re in it; it’s the best feeling in the world.  You know when life serves you up the sort of week that leaves you   wondering why stuff isn’t simpler, the only thing I know sorts it all out is a good sing.  The louder the better and just give them one more tune.
Maybe a part of me gets a kick out of the fact that, within the circus of taking bookings for gigs, travelling to gigs, setting up equipment and finally performing, I feel as an equal to any other gigging musician.  There’s no special allowances offered or accepted, my customers just want a musician and they aren’t going to be able to offer special assistance, extra time or let me off when something isn’t right.  I’ve never felt discriminated against because of my sight, I’ve never felt excluded or hard done by or lesser than and that’s quite something in today’s society.  I feel more equal gigging than I do in my seemingly safe and tidy office job and I don’t admit that lightly.

I still count myself lucky that I get to provide a sound track to someone’s night out or share something of that amazing buzz he or she appears to be having.  Music is a powerful thing.  It does stir up emotions, alters moods and helps people get what’s inside, outside.  It’s probably over indulgent of me to say but I think modes of expression like music is the closest thing to magic in this world.

Did I find what I was looking for under that piano?  No, I didn’t but then you seldom do.
The plug socket I was searching for was     Right beside me the whole time.  Music is a filthy business.

Thanks for reading and remember, don’t trust it!

Top Five Things that grind my blind gears at Christmas

Top Five Things that grind my blind gears at Christmas

But in a jingly jangly bells sort of way?

Normally I hate these top five list things, or 27 things I love to do in an empty room or 41 things you never knew you never knew. But As it is Christmas and the season of good will to all men, and women, here’s my top five things that drive me Christmas crackers.

 

1 Out the way, just let me at them!
You know when someone says “Joe, would you like a sweet?” and offers you a big tin of Roses or Quality Street and then proceeds to read you out the names and descriptions of each and every sweet in the box? That! Yes, I know I can’t see the instructions myself and you think you’re being helpful but frankly, I haven’t the patience.

As a blind chocolate lover, I don’t really care what variety of sweet I get. I like them all. I’m more of a stick the hand in and I’ll eat what I get.

 

2 Send me a blank Christmas card, I won’t know!
Sorry to all my friends and family but I can’t read your Christmas cards. To me, there rectangle pieces of cardboard. Ok, that’s not strictly true. I do appreciate the time and effort you went to but truth is, I don’t know what to do with them and if you pay a visit to my house, you’ll probably find a load of upside down and back to front cards lining the window sill.

 

3 Sneeky sprouts
I don’t like sprouts. Never have and probably never will.
Don’t sneek one or two on my plate thinking I won’t notice. When I bite down on those green pockets of bitter mushy yukness… I know! Anyway, the whole five a day thing isn’t true on Christmas day is it?

 

4 I’m not dreaming of a White Christmas?
White Christmas? No chance. I hate the ice and snow. I’ve done it, I’ve gone out walking with my cane and have either totally lost my way as the usual landmarks like kerbs have changed or vanished and the sound of things changes also giving you a false impression, it’s all about echolocation folks. Plus, landing on my backside, legs in the air is never fun.

 

5 Double fair for taxis?
Are you having a laugh? I don’t drive and so paying double price to travel the same distance does not please me. You tend to see this on Christmas day or Newyears day and I don’t know who started it or why it continues but stop! It’s wrecking my Christmas buzz.
Ok I know taxi drivers need theirs too but to me, taxis aren’t a luxury, they’re a necessity.

 

There now, hope you enjoyed my top five things to moan about at Christmas. Please know, I’m not a Scrooge, not really I love most of Christmas but I think pointing out a few things that bug you is a good thing. Who knows, it might heal the world and make it a better place, somehow I doubt it though?
What more could we wish for at this festive season.

What are your festive frustrations or Christmas grumbles? Come on, you must have some?

Thanks for reading and merry Christmas everyone. Have a fantastic holiday season and remember, dondsc_0031’t trust it!

What am I?

It must have been when I was still at primary school. There was a game show on the TV, round about lunch time, called ‘Going for Gold’.

Obviously I must have watched this on school holidays or on days off due to illness or whatever, but the thing I remember most was the way the questions were put to the contestants. The host, Henry Kelly would say:

“What am I? I am a country bordering Hungry blab la bla….” or “what am I? I am a kitchen utensil used to batter potatoes in to mashed submission.”

You get the picture. Why am I bringing this, some might say, best forgotten quiz show up? Because, for one tiny fraction of a second, we, the audience, got confused. Is this a thing he’s talking about or a person? The ‘I’ in the question throws us. It invites us to imagine this thing, what ever it is, to be somehow alive.

A means to anthropomorphise and play a silly game in our heads. . At the very least, it confused the hell out of me at that age.

But it did get me thinking about me and “What am I”

I am a man of 39 and I live in Belfast though in the wise words of Jonny Cash, “I’ve been everywhere man.” I lost my sight when I was five due to congenital Glaucoma. I’ve been totally blind since then. Can’t see nothin. No light, no shadows and no, I cant’ see you or how many fingers you’re holding up. As I say, as blind as it gets.

If your eyes are the windows to your soul then my soul has been boarded up… Now there’s a dark thought.

Is it black? No, it’s not black but it’s not any colour, except when I bang my head or something. I see stars then -just like anyone else.

I use a long cane or white cane and no I don’t have a dog. People are often amazed why this is so. I’ve been asked many times, why wouldn’t you have a guide dog? I respond with something like. “You can’t fold a dog up and put it in your pocket. You can’t use a dog to hoke something out from under a bed. You can’t accidently leave a dog somewhere overnight and trust that it will be ok when you finally retrieve it.”

On the other hand, a long cane is never pleased to see you. It doesn’t have a lovely coat to stroke and a cane has no capacity for learning and will not give a damn about you or anything.

It has always struck me that, when I meet someone for the first time, the fact that I’m blind is likely to be the most significant thing – perhaps the only thing – they will take away with them about me. They have an image of a blind man. So how do you then apply ordinary everyday things to that image, for example, the fact that I work for a living, the fact that there was a time that I didn’t work for a living and that I have big grown-up opinions on local and world politics and guess what, like everyone else, I love to share them?

Several times a day, both at work and at home, people define me and other blind people like me, as disabled.

I do it myself as a way of explaining myself to others. Whether on the phone to a customer service rep from a utility company or retail outlet, or when filling in forms or applying for a bank account or booking travel in one way or another ’m asked ‘What am I?”

I have to respond so that I can continue with my transaction or whatever in order that I do indeed end up with the service or product or outcome that I require. I’ve fitted neatly in to a box that was designed for peple like me. I’m a disabled one.

But what if we really look at what this is saying? Forget just fitting in for a moment and think about the inevitable end result.

I and many people like me assist in our own classification. When I’m not needing anything from anyone and I feel free to say what I really think, the word ‘DISabled’ causes me to recoil in disempowerment and I have to have a quick word with myself “It’s ok, it’s just so I can”… In my head, where I live, I’m not disabled.

It is just that the world around me is, at the moment, largely inaccessible to blind people or people who have less than full 20/20 vision. I can sit here and confidently say that it’s society that disables me not my lack of eye sight.

But surely there are so many products, systems, new ways of thinking and organisations to make me ENabled? The answer is no. Well, not enough anyway.

When I get up from this chair and leave the house to catch the bus to work this morning, so begins a daily obstacle course. It is not only made of physical barriers like lamp posts and kerbs and traffic but my daily journey is made ever more hazardous by the attitudes, long held innocent but no less harmful discrimination and, of course, my own fear. Yes, after thirty odd years of being blind you do pick up many hang-ups and destructive or at the very least, unhelpful fear baggage.

From a very young age I came to realise that society doesn’t change for the better unless there’s a financial reason for it to do so.

Of course I’ve met hundreds of people throughout my life that want to do things for the better and money doesn’t motivate them. Some of the most driven, intelligent people I’ve met couldn’t give two **** about cost effectiveness or how much will they win or lose. But look around. The infrastructure we rely on from day to day – public transport, the entertainment industry even local government services, succeed or fail by how much money they make and by selling the most, to the most, for the most.

If we as a society really wanted to include people with disabilities or anyone, for that matter who has difficulty interacting with the mainstream community, then money would not be a barrier. Ideas and better techniques and methods of designing things or approaching things wouldn’t be so hard to bring about.

It’s a disgraceful thing to note but part of me really enjoys the fact that when I meet someone new the first thing they will notice is that I am blind. From that a person might make a series of assumptions about me. The disbelief and surprise I’m met with when I say things like I’ve got three children or I love building flat-pack furniture or I have travelled the world or perform as a solo musician around Northern Ireland, still gives me a bit of a thrill. No, I’m nothing special, I’m not alone in this. I know many people like me who are blind or have some other disability, oops there I said it, who do ordinary everyday stuff. But I believe as a society we don’t expect that. We don’t expect much in fact from people like us.

So what am I?

I am Joe. I’m a person and as such, I am full of surprises just like everyone else. Some good, some bad, some secrets and some lies. The things I’m proud of in my life probably aren’t what you might think but then again, isn’t that the same for all of us?

Thanks for reading and remember, don’t trust it!