Learning Disability is for life not just a week…

But this week IS Learning Disability Week (well, one of them… for more about the 2013 confusion of weeks click HERE. 

I’m in the process of compiling a new volume of stories/vignettes in follow up to last year’s novel about the fictional drama group No Labels – A Week with No Labels (still available in ebook and paperback) called Jock Tamson’s Bairns.  In fact I’m giving away a free sampler of it. But a couple of the stories didn’t make it into that free sampler (simply because they weren’t written in time.)  One of them (Heather Holds my Hand)  is currently up HERE for free on McStorytellers  and the other one, for those who just can’t wait, who are too lazy to click on, or who have read everything else and can’t get enough, well – HERE IT IS.

Angus isn’t interested?

Angus speaks in a high monotone whine. He doesn’t give you eye contact. He has a face only a mother could love. To be honest most of the time I think his mother would find it hard to love him actually.  It must be hard to be such a mother. It must be harder to be Angus.

Angus has Aspergers syndrome.  He’s on a spectrum. Poor Angus. Until you think that perhaps you and I are on this spectrum too. He’s at one end of it; far away from the comfort of the Bell curve of normality.  So he knows where he stands. My question is: Where are you on the spectrum?

That’s an unsettling thought I know. But maybe one should think less in terms of spectrums (would that be spectra) and more in terms of people.  Because models and facts and terminology don’t give us enough to go on when we are trying to live a life together in a confused and confusing world.

For example: Let’s look at ‘the facts’ such as they are. About Angus and whether he is interested.

Angus can remember dates and events and pictures and what people said on TV and can (and will) repeat them ad nauseum without being prompted. If he wants to. Problem is, they are usually not the things you want to hear. His particular interest is in war. Dates. Places. Equipment. Battle strategies.  It’s not his only interest though. He has an interest in computers which would give Steve Jobs, Bill Gates and Mark Zuckerberg a run for their money. But they all got to college. No one labelled them with Aspergers. No one checked whether they fitted under the Bell Curve. Unlike Angus. Angus was ‘diagnosed’ on ‘the spectrum’ and his life went down the toilet.  He’s stuck in school in the ‘Behaviour’ unit with no chance of getting into college.  Because he has ‘behaviour’ issues.   A euphemism for saying he doesn’t behave in the way the Bell Curve would deem ‘appropriate.’  He isn’t interested like he should be.  No one questions what we are doing to make him interested. The blame is laid firmly at his door for being ‘difficult’ and by ‘difficult’ they mean ‘different.’  In their infinite wisdom, (You know they. We all know who they are. I don’t have to define or describe them to you now, do I?) they noted that he couldn’t ‘fit in’ with ordinary day to day life and then they spent ten years trying to force him to do just that.  Are you surprised it didn’t work?  If you had no arms would you appreciate people spending ten years trying to teach you to touch-type? No. You’d want them to get you prosthetic arms wouldn’t you? Or adapt the things you had to use on a daily basis to be stump friendly.  It only makes sense. But with Angus, they just spent year after year trying to bang this square peg into a round hole two sizes too small. Any surprise he’s not interested in what you have to say to him today?

On a good day Angus can hold focus and concentration on a task for hours at a time.  If he’s interested. He won’t thank you for reminding him he needs to eat, or maybe he should take a break to have a walk or give his eyes a breather. He’s busy, he’s happy and he’s not interested in what you have to say.  He’s working.  They don’t see it that way though. They think he’s just ‘messing around’ or ‘being difficult’ or ‘not engaging socially.’

On a bad day Angus goes into meltdown.  Funnily enough, a bad day usually comes when they don’t allow him to engage on what he’d call a ‘good’ day.  On a bad day, he can throw a tantrum with all the extremes of a two year old and all the power of the seventeen year old he is.  Angus is, they say, the master of ‘challenging’ behaviour. But only when he is ‘challenged.’  Otherwise, he’s a pussy cat. But no one can be bothered to work out what it is that makes the pussy cat turn into a ferocious tiger.  No one has learned what makes him flex his claws. So he gets left alone a lot. Angus spends most of the day stuck in the corner of a room. Away from people.  Alone.  Isolated.  People say it doesn’t matter because ‘Angus isn’t interested.’

The ‘facts’ as they are written down on his ‘profile’ are thus: ‘Angus acts like he isn’t interested.’ What value ‘facts’ eh? Of course, in a way he’s not interested.  He’s not interested in many of the things you and I are interested in, but he’s very interested in the things he’s interested in – things you and I can’t be bothered to spend time on.  For example, would you spend hour after hour looking at tin foil? Would the telephone area codes across the world be fascinating to you? … but what harm is Angus causing by his interests? Okay, when he blurts out some facts about the D-Day Landings randomly in the middle of a conversation on something seemingly unrelated it can be annoying but just because he’s ‘inappropriate’ doesn’t mean he’s not interested.  He just has poor social skills. And I suggest that in dealing with Angus most of us exhibit pretty poor social skills.  We don’t give him credit. We expect him to fit in with us. Why should he?  Who is to say that his interests are more or less worthy than my interest in nineteenth century popular fiction or your interest in embroidery/horseriding/sports. Each to his own, eh? We’re all Jock Tamson’s Bairns.

So if Angus isn’t interested in us and we aren’t interested in him, isn’t that how the isolation is continued.  We need to find common ground. And his brain isn’t wired to be the instigator of such a conversation. So we need to meet him where he is, not be stubborn and demand that he meet us half way.  He hasn’t got the fuel to make the 60 mile journey.  He’s only got fuel for 10 miles.  We have fuel for 120 so why not just take the trip all the way to his house, where he feels safe, and start from there?  Do you begrudge him that?  Shame on you.

Let’s try coming at the ‘facts’ from a different angle. Angus likes computers, Not the way you and I might like computers. He likes the patterns in algorithms.  He likes to see that all the lines of a programme are ‘right’. This is a useful skill properly harnessed.  If he’s left to get on with it on his own Angus could hack right into the security services within half an hour. He wouldn’t do it to find out secrets, he’d do it to check the ‘coding.’  But aren’t there better ways for him to spend his time on computers? You bet there are. And he could be paid for doing them.  It’s up to us to see his talents and to employ them to the best advantage of both Angus and the society he lives in.  Give the boy a living wage rather than benefits.  Play to his strengths, don’t dismiss him because he’s on ‘the spectrum.’  Don’t patronise him by calling him ‘high functioning.’  Give the boy a job he can do and he’ll do it all day quite happily.  Treat him like a reject and he’ll behave like one.  It’s a simple enough equation isn’t it?  Forget the Bell Curve. Forget the models. Forget the spectrum. See the boy.  And learn to treat him like a man.

You can download a free sampler copy of Jock Tamson’s Bairns just by clicking HERE  or going to free downloads on the HoAmPresst site.  More information from Guerrilla Midgie Press 

Bombs and Butterflies by Jo Carroll

bombsI’ve travelled with Jo Carroll (virtually) a couple of times before, so I knew I was in for a treat when she decided to take a trip to Laos.  Not that I had much of a clue where Laos was. No matter. It was costing me nothing (or simply the price of an ebook) and I was about to be whisked off to Laos (near Vietnam) via Thailand.

Jo has been something of an independent traveller in the past, having undertaken an exciting (sometimes too exciting?) round the world ticket gap year as a retiree; followed by a trip to Nepal, where she nearly bit off more than she could chew (or did it nearly bite her?) These trips are covered in the excellent Over the Hills and Far Away and its all too short follow up Hidden Tiger, Raging Mountain (both available and highly recommended as ebooks). In Bombs and Butterflies, because her time was short, she took the executive decision to go along (to an extent) with a tour group.  Which somewhat changed the dynamics of her journey for her and gave her perhaps more restrictions than she is used to or feels completely comfortable with.

However, it didn’t change the interest for the reader. Because (at least for me) one of the most compelling things about Jo’s travel writing is that she doesn’t just wax lyrical or informative (though she’s good at both of these) about scenery and history of a place; her journey is at least as much about the people she meets as the places she goes. And I’m interested in people. All kinds of people. Be they Aussie ‘backpackers’ or Buddhist monks.  Bombs and Butterflies introduces you to your fair share of both.

One of the things that puts me off travelling is the very transiency of the experience and the sense that unless one spends a lot of time in a place (something I am unable to do) you don’t really get into the skin of a place, you don’t really get to ‘know’ anything, or make anything other than superficial connections.  But at one step removed, travelling vicariously with Jo, I find that I get to know more than I ever imagined (and probably more than I’d  do if I  travelled on my own.) I don’t think this is just because Jo is a more ‘intrepid’ traveller than I would be, I think it’s because she is as she styles herself now a ‘writer and traveller’ and she knows how to convert her experience into words that take the reader straight to the heart of the matter – be that place or person. Her observational skills are good and her eyes are 20:20!  She doesn’t try to give you anything other than her own experience but that’s part of what’s so captivating. Reading Jo’s work you feel you get to know her as well as the people she’s meeting and share in her experiences along the way (all from the safety of your own couch!) That’s no easy feat.

So I can highly recommend Bombs and Butterflies as yet another episode in the ‘adventures’ of Jo Carroll.  I can’t wait to know where she’s going to head off to next. I don’t go on holidays any more. I don’t need to: I travel with Jo Carroll every step of the way. Keep travelling Jo. Keep writing about it.  There are two places I’d like Jo to go next: Cuba (where I’ve been) and Bolivia (where I haven’t). She’ll need to get saving those pennies.

Cally Phillips reviews for Reading Between the Lines Collective smallREADING

Syndicate thyself?

It occurs to me that different people read different blogs and that if you read me here you may not read me on McVoices, Authors Electric, HoAmPresst or Guerrilla Midgie – all the other places I virtually hang out when I get a minute.  If you do follow me round all my haunts then I apologise for the following which is an example of syndicating a blogpost. But there’s a reason. It is important. I need to reach as many people as possible.  And I have a small window of time. I need to work smart on this one.

So here goes:

Do you know what week it is? (Next week) 

In the past Learning Disability has had ‘a week’ like many things do. This year things are different. There seem to be ‘weeks’ all over the place. And if you’re confused, it’s hardly surprising.

What kind of a way is this to get a message across?

Traditionally the ‘week’ has been held in June. In Scotland where SCLD take the lead this is still the case, with Learning Disability Week being held June 17th – 23rd.  In their wisdom, Mencap ‘the voice of learning disability’ in England and Wales is running the ‘week’ in August from 19th-25th.  This is the official ‘week’ for England/Wales, but the message does not appear to have got through to local levels.  For example Leeds Learning Disability week (affiliated to Mencap) is June 17-23rd, while Sheffield City Council is holding it from 24th-28th June.  To further complicate things Enable Scotland (which is the Scottish rebrand of Mencap) will hold the week at the same time as their English counterparts in August.

The lack of joined up thinking here is less funny than sad. When all those dedicated to ‘giving a voice’ for those with learning disabilities who find it hard to shout for themselves, cannot present a united front, it gives one pause for thought.  In the context of Disability Living Allowance being shelved in favour of Personal Independence Payments and the rolling out of Self Directed Support in Scotland, it is particularly worrying that those tasked with standing up for some of the most vulnerable in our society don’t seem to know, or at least can’t agree, what day of the week it is! At grass roots level it makes it very hard to get the message across.

I’ve never managed to get any personal contact or interest from any of these organisations for anything I’ve ever done in the field of advocacy drama – over the last 10 years.  However politely I approach them, it seems they are far too busy (or disorganised? or disinterested?) to respond to grass roots advocacy which comes from outwith their own organisation.  Draw your own conclusions.  I’m sure they are doing a fine job but it just makes me think that perhaps, just perhaps, they are missing a trick.  Or a chance to spread the word further?

I have worked in advocacy drama for some ten years now.  I first encountered the Learning Disability label in 2003 while undertaking a drama residency post. As part of this three year tenure I ran and built a legacy programme from workshops funded as part of a European Year of Disability Project. One strand of this project saw a group of adults labelled with learning disability start their own advocacy drama group, adapting the work of Brazilian dramatist and provocateur Augusto Boal to suit their own needs.  The aim of the group was to cut through the complexities and simply present their views and life experiences directly to an audience.  Where service providers claim to speak ‘for’ them, the group decided the best way to get their message across was to speak for themselves. Drama provided them with this forum.

Throughout this process I also embarked upon a ‘dramatic’ journey which was quite life changing. I ran a drama company, I won an entrepreneur award, I had a play performed at the Scottish Parliament  I obtained an MSc and I set up an advocacy publisher. All things I would never have done without meeting my labelled friends. But have I ever come into the radar of the Learning Disabilty organisations? No. There I remain firmly invisible.

Last year for Learning Disability Week I  wrote a novel – a fictionalised account of a drama group run for and by adults who have to carry the learning disability label with them through life.  It’s funny, sad, serious and thought provoking and was described by author Julia Jones as ‘perhaps the most significant book I’ve read on my Kindle this year.’ 

Originally published in 5 ebook ‘episodes’ for Learning Disability Week 2012, with the addition of a further two days ‘A Week With No Labels’ was born and is now published both in paperback and ebook formats in the hope that it can reach the widest audiences.

This year for Learning Disability Week #1 I’m  giving away a ‘sneak preview’ of my new work in progress ‘Jock Tamson’s Bairns’ which is a collection of short stories and vignettes about other experiences in the world of learning disability and advocacy drama.  It is available from advocacy publisher Guerrilla Midgie Press FREE online NOW.  The whole thing may be ready for the #2 Learning Disability week.

One thing I’ve learned in advocacy in general is that you can’t make people sit up and take notice.  All you can do is put the work out there and hope for the support of people with a conscience.  Hopefully some folks here will be able to spread the word further – that labels are for tins not for people.

You can get hold of a free copy of Jock Tamson’s Bairns sampler HERE

Or purchase A Week With No Labels as Kindleepub (for ipad etc) or paperback.

Find out more about advocacy publisher Guerrilla Midgie Press and Cally Phillips 

Remembering a man I never knew…

‘At the going down of the sun and in the morning we will remember them.’ Hey, wait a minute – it isn’t November. These are the words we trot out (even if we do it with feeling) in November.  It’s from poet Lawrence Binyon’s Ode to Remembrance.

I don’t like wars. I feel nothing so much as a sense of waste. And I’m a pacifist. At 50 years of age I am lucky to be of a generation where I’ve never had to engage with the moral conundrum of ‘doing the right thing’ by killing other people (unless you count the Falklands and Iraq/Afghanistan). War hasn’t really touched me in my lifetime so it’s easy for me to hold my position, I realise that.  I’ve always kind of shied away from historical remembrances having the slight feeling of unease that in some way they ‘celebrate’ war. But lately, I believe I’ve come to a greater understanding of the notion of commemoration.

IMGP3113And so, for the past few years, I’ve taken Binyon’s words to heart and every morning and evening I  try to remember a man I never met.  His name was David Saunders. He was born on 31st July 1923. He died some time in June/July 1944. Just before his 21st birthday. He was at the D-Day Landings.  He was my great Uncle. I never knew him.

In the 1980’s I fell heir to his ‘archive’ which consists of photographs (both of him and that he took while in the Navy) and his letters home to his mother from 1940 onwards.  The first ‘project’ I undertook with my new computer (Amstrad) was to copy type up his flimsy hand written letters to preserve the text.   But after that it all kind of stalled.  I have kept the letters in an envelope and the pictures in a box and every so often looked at them.

I have several pictures of him on my walls – this one is in my kitchen as it reminds me that he and I had something inIMGP0183 common –  even if it be as banal as carrying a watering can.  I have pictures of him as a boy climbing trees and as a young man on board ship training a gun into the sky.

And for a year or so it has occurred to me that I could publish his archive either online or as an ebook. I have the skills and I have the technology.  Do I have the time?  Should I even ask that question. There are things in life which one makes time for.

And sometimes technology makes it easier for us.  I’m quite a ranter about how the internet can waste your time – and how there’s never anything good to watch on TV. But all day today there is something REALLY valuable and good to engage with and I urge you to do it.  Channel 4 have got a D-Day as it happens feature running online at their website and a couple of TV programmes to support it.  It is Peter Snow at his finest (proving that all those ridiculous political swingometers etc can be used for good purpose finally!) and much of the ‘evidence’ was compiled by an ‘amateur’ historian Colin Henderson who spent 19 years getting ‘the story’ together.  He deserves the greatest of respect.  And I ask myself: Do I have time to archive one man’s work? One man who doesn’t even exist in the memory any more but only through the pictures and words he left behind.  How can I not give this the time?

IMGP3111Otherwise, there is just this. This commemorative scroll  has been in a box for decades. I’m putting it on the wall now. It’s not much to mark a life by but it is a stark reminder to me that I will be wasting the memory of his life if I just keep it in a box.

I am sure that nearly everyone has some archive material of a relative killed in the war (or in a war) and I suggest that we all get our our boxes, root through them, and give the respect our relatives deserve back to them.  Do what we can to have every individual story made ‘live’ once more through the media we now have available to us.  Websites. Blogs. Ebooks.  There are so many ways.  Find a way to ‘remember’ these individuals who are of no importance to anyone any more – except to us because we are the guardians of their lives. Of their memories.  I pledge that by this time next year – by the time we come to the 70th Anniversary of D-Day I will have filled in the gaps on the life of Ordinary Seaman David Saunders and will have published something substantial for him to be remembered by.  It’s the least I can do.  I don’t believe that ‘he gave his life to save mankind from tyranny’ but he did give his life. And he was my family. I cannot remember a man I never knew. But I can commemorate his life.

The link to the Channel 4 project is http://dday7.channel4.com/?intcmp=homepage_main And you can follow the ‘story’ of seven people. I suggest you spend some time today doing just that.   Most of us have enough technology to play the live stream more or less constantly through the day.  It’s a real chance to connect with the past.  They are showing you D-Day ‘as it happens.’

IMGP3114 Then perhaps you should go into your cupboards, attics and garages and take out your own personal ‘memories’ from family members. And DO something with them.  That’s a way to commemorate. To remember. Something to write home about.IMGP3115

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