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If you were to ask me how my weekend was I wouldn’t know where to start. Moving? Funny? Sad? Inspirational? Well yes, all of those things and a lot more.

Let me start at the beginning.

Most people who know me, or have read my blog, my novel or FaceBook page, will know that back in the mid eighties I worked with a very talented and gifted human being called David Heffer. He worked passionately and tirelessly in helping people with learning disabilities move from institutions to a better life.

In the early 90’s he was killed by the IRA when they bombed a pub in Covent Garden. He was only 30.

 David was one of those special individuals who you are fortunate enough to come across once or twice in your life who are so true to themselves that the tune they dance to gets inside your head and stays there.

When I started to write ‘Tasting the Wind,’ which is set against a background of  movement from institution to community, it was obvious that David’s spirit would loom large. I dedicated the book to him, and included him as a character.

A couple of months ago I started to receive messages through every conceivable web-based route: there was a message in my e-mail, on FaceBook, and in my blog comments. It said: I am David Heffer’s mum. Can we meet.

 

So this weekend we were host to David’s Dad, Brian, his Mum, Lesley, and her husband, Ivor.

We spent the most amazing evening just talking and looking at photographs. There were photographs of David from all corners of the globe. There was a photo of him in a programme from his beloved Arsenal, passionately cheering his team on. In fact everything he did he did with passion.

In addition I discovered what a good writer David was. He kept a fascinating and humorous journal of his travels around South America. It includes accounts of his journeys through scenes of great natural beauty, of being threatened by gun-toting locals, and eating fried guinea-pig.

Although I knew that David had been asthmatic, I found out how he had been so bad that he spent two years of his childhood in a sanatorium (where the diverse curriculum included shoplifting.) He survived the Asthma. He also survived a serious motorbike accident when he was living in Australia. It took a coward with a bomb to end this amazing life.

We laughed a lot at things that David had written- his accounts of his travels would not look out of place in a Sunday Travel Supplement. Our meeting was of course tinged with sorrow, but we were prevented from becoming too serious by the antics of our dog, Barney, who seemed to have developed a lustful obsession for David’s Dad, Brian. Life isn’t like a novel- it doesn’t come in a single genre.

So how do I feel? Happy to have found out more about David Heffer and to have made new friends with his wonderful family. Angry that a series of random events led to him being the only person to die in that bombing. Inspired by his unique energy and ability to pack so much into his life. But sad that last night our main guest, the one who had brought us together, could not be with us.

I try not to blow my own trumpet- I know where it’s been!

Thanks to Simon Jarrett for doing it for me in my latest review on Amazon:

Tasting the Wind by Allan Mayer.

 I read this book after hearing Allan Mayer read some extracts from it at a conference – and I’m so glad that I did. Anyone who was around during the ‘big resttlement’ of the 1980s will cringe as they recognise many of the absurdities and contradictions of the time. These are beautifully captured by Mayer in the debates about language and ‘real choice’, the early experiments at social integration ending in tragi-comic farcical outcomes in pubs and shops and his hilarious minutes of residential home staff meetings. He also gives a riveting portrayal of the utterly, bizarre, other-planetary world of the long-stay hospital: that asylum where people were anything but safe, the hospital were people weren’t ill and didn’t get treated, the NHS facility where most of the staff were more institutionalised than the patients. If you weren’t around at that time then this book will give you a searingly honest portrayal of what it was like, including the mistakes and the new absurdities perpetrated by some of the well-meaning but at times over-zealous ‘liberators’ who supported people out of the hospitals. However the book is much more than this. At different times it had me shaking with laughter, welling up with tears and consumed by rage – sometimes within the space of one or two pages. He is a gifted comic writer, but never at the expense of the people of he is writing about and has created a world of believable, rounded people, including the people with severe learning disabilities who are the stars of the novel. Although very, very funny at times this is not a comic novel – it has very serious themes and an underlying poignancy. To have created a thriller in which the stars are two people with severe learning disabilities, one of whom can’t talk and the other seems to chant nonsense, is some achievement and gives an identity to people which no amount of worthy ‘values’ training could ever achieve. Allan Mayer captures something very important about the post-hospital experience of people with learning disabilities and the people who work with them. However progressive and ‘person centred’ the thinking, we seem to find ever more ingenious ways of not listening to what people with learning disabilities are trying to tell us, even the most progressive amongst us. Some would say especially the most progressive amongst us. I share other reviewers experience of the at times bizarre layout of this novel, with strange gaps and rogue paragraphs floating up or down to where they shouldn’t be. I believe it arises from this being printed to order rather than in bulk. However for me it somehow reflected the world it was written about – it’s the sort of book layout you’d expect to come out of the strange world of the mental handicap hospital.

Thanks Simon, Much appreciated.

I have just had the great fortune of attending the Social History of Learning Disability Conference at the Open University in Milton Keynes.

I delivered a paper about resettling people from longstay ‘Mental Handicap’ hospitals in the 1980s, illustrated with passages from my book, ‘Tasting the Wind.’

 I came away feeling that I was seeing things in a different way (surely the mark of a good conference) and wanting to share what for me were the highlights.

 Where do I start? People spoke from such varied angles: some about their work with people with learning disabilities over the decades, some about their first hand experience of receiving services either in the large institutions or in smaller settings.

 Daniel Doherty had lived at Calderstones from the age of 6 to 16. He is still only 42. After I read a passage from ‘Tasting the Wind’ about a Hospital ‘Punishment room’ he told me how he had been locked in one of them on several occasions and was subjected to electro-convulsive treatment.

 Ebbw Hreinsdottir came from Iceland and spoke to us through an interpreter. She had rebelled against the staff, rejecting their assessment of her as ‘retarded’ and was classed as challenging because of that. Ebbw now lives with her husband.

 Rob Henstock told us how he has worked with people with learning disabilities since 1973. He recounted how in his first job the staff encouraged him to beat up a random patient to show the others that he was not to be messed with. He refused, and as a result was locked into a time-out room and given an injection.

Simon Jarrett felt that the institutions had destroyed existing networks of support and demonstrated this from Old Bailey court records from the eighteenth to twentieth centuries. A man with a learning disability who had been charged with involvement in a riot in the 1700s was defended by a network of friends- all of whom had a different alibi for him. What is more, that man had a job- way before our concepts of supported employment. As time went on, the views of judges toward people with learning disabilities in the dock hardened until, in the 1840’s they disappear from court records. That was about the time that the institutions opened.

Perhaps the highlight of the whole conference for me was when Daniel gave his presentation and Mabel Cooper, who had lived in an institution at the other end of the country asked if men and women were kept apart at Calderstones. Suddenly there was an exchange between them which at one time could never have happened. ‘We used to put letters through the fence,’ said Mabel. ‘Want to know what we did?’ asked Daniel, a twinkle in his eye. ‘We went to the laundry room, and if staff came along someone would sing to warn us.’

 These were not prisons, but hospitals.

 One theme of the conference was that the hospitals had both good and bad staff, and that demotivation during the closure programme was understandable. But this did not take away from the confirmation of what we all knew- that many ‘patients’ were dehumanised and brutalised by the experience.

 So what do we learn from this? Surely the purpose of such histories is to preserve the legacy of a large number of people whose voices are at risk of never being heard. But what came over strongly was the realisation that an institution is more a state of mind than a building. Some people recounted happy days and good memories of staff during those days. Living in a smaller, community based setting does not guarantee non-institutional living.

We must learn from history, and do all that we can to prevent the worst institutional practices from returning.  That is a great challenge in these days of having to do more with less.

The one thing that should give us cause for optimism is that these days there are strong advocacy groups, and at conferences such as the Social History of Learning Disabilities conference ‘staff’ stand alongside ‘service users’ as presenters, which must mean a more balanced overall view and a shift in power. Let’s hope that this way we can prevent the recurrence of the nightmares of the past.

You can visit the Social History of Learning Disability website at http://www.open.ac.uk/hsc/ldsite/research_grp.html

Recordings of all of this year’s presentations will appear there shortly.

In November I will have worked for Brothers of Charity Services for 20 years.

Recently we launched our new website, which you can see here:

http://www.brothersofcharity.org.uk/

Click on the ‘Having fun’ section and look at the video, where you will see some of the people I work with from day to day.

Then you may realise why I think I probably have the best job in the world…

Prestatyn 09 004Well that’s the holiday period well and truly over.

Before I went down with the swine flu I did take a couple of holidays- the first in Menorca at a Thompson Gold hotel, the second at the other end of the market at Pontin’s in Prestatyn.

Normally we would take two weeks in the sun. The reason for this total departure was that this is our first real summer as foster carers, so we took our first tentative steps into the world of the family holiday.

I am surprised at the extent to which I enjoyed the second holiday.

The accommodation was basic, but in a quiet location and we had one of the best weeks weatherwise of what has been a drab and dismal summer.

The social club, where the evening entertainment took place was, not to put too fine a point on it my idea of spending eternity in one of the lowest pits of hell: dirty, cramped and noisy. But with full days out on the beach and visiting local towns, we didn’t need much entertaining at night.

The best thing was the standard of activities for the kids during the day- a full programme including archery, zip-wiring, quad biking- which our foster son loved perhaps only slightly more than we enjoyed watching him.

I even managed to get some reading done: Odd Thomas, by Dean Koontz. Although I have read loads of his books I have for some reason only just got round to this, which is perhaps one of his best and the first in a series. Spooky, humourous, thrilling and in places extremely moving. Loved it.

So would we go back to a British Holiday camp? We’re already planning the next one. Like any holiday, you have to take from it what you want and leave aside those things which just aren’t your cup of tea.

Not that I could totally leave behind my week in the sun…

A Crystal Meth True Story.

I have often wondered over the past few months if any of the 400+ books published by YouWriteOn so far would break away from the pack and achieve high sales and sustained Amazon rankings.

This week, I heard that ‘Tweaking the Dream’ by Clea Myers was starting to do exactly that. Since the book was featured in The Sun newspaper it has maintained a consistent position within the top 10,000 books on Amazon.uk. When I researched the Amazon rankings earlier this year I discovered that a book that could do that would be considered a success by any small publisher.

My first reaction upon hearing about Clea Myers’ success was that it was a cause for celebration for all of us in the YouWriteOn stable. Having said this, any celebration of  ‘Tweaking the Dream’ as a triumph for POD publishing must come second to a far more important triumph: this book is getting the truth out there about the evils of Crystal Meth. It is Clea Myers’ own story about her descent into Hell through her use of the drug, and if any of the YWO books go on to greater things it would be good to know that it is one with such an important message.

You can read the Sun interview here:

http://www.thesun.co.uk/sol/homepage/features/2583142/Crystal-meth-is-the-devils-poison.html?OTC-RSS&ATTR=Features

Visit Clea’s website here: http://cleamyers.com/

I have the immune system of a blancmange.

I once asked my Doctor if there was anything I could do about this and his answer was that you get what you’re born with.

I still persevere with a healthy diet- I will usually choose fruit over chocolate- but it doesn’t seem to make much difference. If there is anything going I can be certain to catch it, and it will take ages to shake off.

Hence, with the outbreak of swine flu I knew it was only a matter of time.

I had spent most of Summer with a cold which would disappear for a few days then return like some mangy homing pigeon. I had even joked with a colleague: All I need is aching joints and I could take a week off with swine flu.

Two weeks ago I started to get the cold symptoms again. Thinking it was just the cold coming back I drove into work. As I pulled in I started to get chest pains. I began to wonder if it was a heart attack, but as the pains eased I got out of the car and found that I was distincly wobbly.

Going into work I chatted to some of my colleagues, but the whole scene felt hazy and unreal. Then came the diarrhoea, so at that point I decided to phone the swine flu helpline.

After answering the questions I was told in no uncertain terms to go home, go to bed, and get a friend to pick up Tamiflu using the code number I was given.

The use of non-medical staff to diagnose swine flu has led to some criticism, although it is understandable that people flocking to surgeries would not be a good idea. It is also impossible to say with certainty if something is swine flu without tests having been made. As mine has gone over a week I needed a doctor’s note, and the note says ‘flu like illness.’

It certainly is ‘flu-like’ in that the worst symptoms are tiredness and lack of energy. I’m only just managing to spend more than an hour out of bed and still haven’t eaten a full meal after two weeks.

As I work with vulnerable people I am having to stay away, and as our household consists of myself, a child, and a wife with chronic asthma, I’ve spent most of my time in my room. Thank goodness for my laptop, and for friends who have gone for my medication, done little bits of shopping and sent over loads of films to stop me going ga-ga. I did make the mistake of starting to watch one called ‘Doomsday’ which was about the population of Scotland being wiped out by a virus…

My wife Alison has done a fantastic job of ‘barrier nursing.’ If she picked this up it could have very serious implications. I just hope that I can eventually get out of the habit of carrying antiseptic wipes everywhere.

Having access to the internet I have also managed to find things out about swine flu.

It is generally lasting only a week. As I said, my immune system came from the bargain basement, and I can be guaranteed to hold onto things.

It is affecting people to different degrees. I’ve only had real flu perhaps twice in my lifetime, and I have to say that I have had worse than this. Swine flu is just flu- there’s nothing different about it, and it will kill people at the same rate as any other flu. As with everything else in today’s world (pause for fit of sneezing to subside and wait for snout to emerge…) it is hyped up by media hysteria.

So… I’m just waiting now for it to go, so I can get back to normal life and work and stop feeling bored out of my skull. If you are reading this do drop me a line- not a ‘there there’ (it is only flu) but tell me a joke or something interesting from the world out there.

Oh yes, almost forgot. There is one side to swine flu that I feel it is my public duty to warn you about: you may suddenly find that you receive an unusual amount of pig-related merchandise  (cuddly pigs, chocolate pigs, etc.) and e-mail attachments such as this one sent to me by my brother:

pig

Oh well, suppose I’d better just keep using the oink-ment…


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