Allan Mayer’s Weblog

Posts Tagged ‘Learning disability

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.

 

It hadn’t been a good day, but I don’t want to talk about that…

 What I want to talk about is how ignorant people seem to assume that those around them are equally ignorant. Have you ever found yourself shouting at your TV screen during Who Wants to be a Millionaire: ‘DON’T PHONE A FRIEND! PHONE SOMEBODY ELSE’S FRIEND! ANYONE WHO IS YOUR FRIEND WILL BE AS THICK AS YOU ARE!

Friday was one of those days where a car crash may have brightened things up considerably… or so I was thinking as I drove back from the KFC.Now I don’t want to berate this fine institution and provider of jobs for a generation of hard working spotty youths, but I don’t actually like KFC. I think it’s over rated, and have my own theories about what its secret ingredients are. I was almost converted a few months ago by their gravy, but was disappointed the next time I tried it when it appeared to have been made by someone who had just been sacked from McDonald’s for making the thick shakes too thick.

But my wife and foster son love KFC. So what I tend to do is pick myself up a chicken kebab from the Nile kebab house (in my opinion the finest take-away meal in Chorley) then call for a KFC on the way home.

The Nile kebab is made in front of you from fresh chicken fillets, hand made naan bread, salad, chilli sauce… sorry, but the saliva is sticking up my keys…

So I get my kebab then go on to KFC. Normally it’s in and out, but tonight they’re queueing to the door and only two people are serving.

I’ve waited for five minutes when a middle-aged man in an expensive looking overcoat joins the queue next to me.

Five minutes later he says: I thought this was supposed to be fast food…

‘Yes,’ I say (and this was my first mistake) ‘and I don’t even like it. My kebab is congealling in my car.’

For some reason, this was taken as some sort of  signal. A signal which meant that we were somehow friends now, bound by our shared suffering as we waited forever in a queue for chicken covered in a blend of spices bound together by “”””.

‘I’ve been on a course today…’ he said.

‘Yes?’

‘Yes…  and there was a question about if I had any issues with staff who were homosexual…’

Right, I’m thinking, you’ve established that you’re something in management… but where is this going?

‘So I said,’ he said ‘no, I don’t have any issues with homosexual staff… because I don’t employ them.’

Now like I said, I’d had a bad day. I work with people with learning disabilities and am not only well aware of discrimination issues, I fully ascribe to those beliefs. What I resent is being tired and stuck in a queue on a Friday night where you suddenly feel obliged to uphold those values.

I didn’t feel that a lecture would be appropriate (or indeed understood) so I decided on another tack…

‘Well…’ I replied, ‘I won’t be applying for a job at your place then…’

It was worth it for the look on his face. I was tempted to mince out of the place, but Alison and Duane would have been denied their gourmet meal- and would have been deprived of their cholesterol fix.

So instead I just turned my back to him, not sure if I wanted him to take it as an invitation…

OK, before I start- Reality Check…

I am not, as has been said in some quarters about POD published authors, the literary equivalent of  the ‘Britain’s got Talent’ Saddoes who assault our eyes and ears and in some cases our moral sensitivities on a Saturday Evening.

I have written a novel which will have appeal to a discerning but limited audience, granted, but in having it published through Print on Demand I know what I am doing. People are reading the story, and they are enjoying it. Maybe in smaller numbers than if I’d been taken on by a mainstream publisher, but as my belief is in the story and not in money I would rather a few people read it than it stays on my hard drive until I die because it is not considered ‘commercial.’

But in my small way I got my fifteen minutes of fame today, and enjoyed it.

Let’s get it into perspective though. As much as I love writing, I belong to another world, a world which is more real and more rewarding.

Tasting the Wind features people with learning disabilities because for over twenty years that is a world in which I have been immersed. I manage a day service for people with Profound Learning Disabilities. Much of the job is administrational but occasionally I get to work ‘hands-on.’ Like yesterday when I spent an afternoon pedalling people around on adapted bicycles, getting the wind in their faces and experiencing speed.

Today I accompanied people to a ‘Wheelchair aerobics’ session at the local leisure centre.

I got back to the office where two of my tasks at the moment include merging two services into one, and buying equipment in memory of a dearly loved ‘service user’ ( a piece of jargon we are obliged to use) who died recently.

In the midst of this, a staff member called me. I picked up the phone to hear her say ‘you’re famous!’

‘I’m what?’

‘Famous!’

it turned out that a former member of staff who has now gone to university had walked into her tutor’s office to see a copy of my book on her desk, and had texted to pass on what she had seen.

It was a nice feeling.

Then I got home. Wednesday night is a night where I get a bit of free time. My wife, Alison, is now a Brownie leader- well almost- soon she will be taking an oath with her hand on a mushroom (which I think is bordering on the occult.) So she is out at the same time that our foster son, Duane, is at scouts.

So I go online. My blog stats and website hits are soaring at the moment, so I’m pleased. People are either reading what I have to say, or are mistaking me for an American Evangelist of the same name (I’m getting some weird e-mails from people wanting to ‘share their visions.’)

Then I read an e-mail from a company director who wants me to sign some copies of Tasting the Wind as corporate gifts. I am absolutely amazed, and honoured.

Like I say, I’m not so stupid as to think that this makes me Dan Brown. But it is pleasing and  flattering.

And it is a wake up call.

I don’t pretend to know enough about the publishing status quo to claim that traditional publishing is dead or broken. But I do know one thing…

The mantra of some supposed ‘experts’ is that self-published and POD published books are only bought by the friends and families of the authors.

Maybe this was the case in pre-internet days.

And yes, it’s true that POD authors won’t sell as many copies as those with the marketing machinery of a ‘real’ publisher behind them. And my novel won’t get as many reader as one by Peter and Jordan, because in this world hype is all-important, but…

people who have never met me- people in the UK, America, Australia, Canada, have bought my book because they saw it on the internet.

So one Shibboleth of the supporters of traditional publishing has fallen. Fact.

What comes next?

This is the story of two men.

We’ll call them man A and man B.

Man A is 48. Man B is 30.

Man A got a nail in his foot, causing some internal damage. It was his own fault. Man B got a broken leg. It was no fault of his own.

Man A got the medical attention he needed. Man B didn’t.

Man A had access to pain relief. Man B didn’t.

Man A‘s injury didn’t lead to any complications. Man B‘s did.

Man A is typing this. Man B isn’t here to contribute, because…

Man B died…

WHY? Was it because Man B lived in a third world country without access to proper medical treatment?

 No, it was  because…

Man A manages services for people who have learning disabilities. Man B has… had… learning disabilities.

And it happened in the UK in the twenty-first century.

 Mark Cannon was admitted to hospital after his leg was broken whilst in respite care. He waited three days to see a pain team. Although his family pointed out that he needed close supervision in hospital, he was given a bed at the furthest point from the nurse’s station. After his leg operation he needed a blood transfusion. He didn’t get it, along with vital medication which he should have had to prevent him from having seizures. Mark Cannon was discharged from hospital in agony. He suffered renal failure, had a heart attack, and died.

 Remember: this was just a young man of thirty with a broken leg.

And, sadly, Mark is not the only one.

Now tell me: how far have we come?

 

 Andy Cope, author of the SpyDog series, once asked me the inevitable question: as authors are supposed to write about what they know, do I presume that you witnessed scenes like those in ‘Tasting the Wind?’

Of course the answer is Yes. I did work in a ‘Mental Handicap’ hospital in the 80s, people were treated like sub-humans (not wanting in any way to forget the good staff who struggled to maintain people’s dignity against the odds) and there was a culture of what disability guru Wolf Wolfensberger called ‘death-making.’

It is this experience, more than any other, which informs Tasting the Wind.

In the prologue a man dies having been tied to his hospital bed by a nurse and allowed to choke on his own vomit. The scene was based upon something which really happened, although I have changed the circumstances radically so that its origin cannot be traced back.

Now I would have expected everyone who read that to be appalled. I was surprised when I put it out for review that more than one reader followed the tack of ‘well it wasn’t really murder was it?’ (no, technically it wasn’t) but then went on to say that because I didn’t say what the hospital’s restraint procedures were they were probably doing something quite acceptable.

THEY TIED HIM TO THE BED AS A PUNISHMENT THEN LEFT HIM TO DIE AS THEY HAD SEX IN ANOTHER ROOM FOR GOODNESS SAKE.

Now I do have a different perspective here because I work with people who have severe learning disabilities on a daily basis, but it does seem sometimes that even in these supposedly enlightened times we still lower our standards of what is acceptable when dealing with a severely disabled person.

Imagine that it is one of your loved ones- your wife, child, mother. They’ve done something that a nurse finds unacceptable- like complained about the food. So the nurse ties them to the bed and goes off and leaves them to choke. Would you be talking about hospital procedures then?

The first Dean Koontz novel I ever read was One Door Away From Heaven. It featured a psychopathic killer who murdered disabled people, dressing his actions up as ‘utilitarian bioethics.’  What he did was shocking, but I was even more shocked by Koontz’s postscript, where he explained that utilitarian bioethics was actually being preached by some American academics.

One of the arguments put forward by this warped philosophy was that the existence of severely disabled people brought sorrow into the world. You get rid of those people, you reduce the amount of sorrow.

I don’t need to point out the similarities between this and the beliefs of a certain mid-twentieth century dictator.

Yesterday I atteneded the funeral of a twenty-four year old lady who had been born with severe learning and physical disabilities. And we celebrated her life. We didn’t talk about her in a pitying and patronising way, we remembered her as a person who had touched all of our lives. For the moment the sum of sorrow in the world is increased by her loss.

And I am left with the question: what does it mean to be truly human?

Well, I am hoping that I might be one day… because I’ve had a couple of people enquiring if Tasting the Wind is available in Australia.

Cate Thompson from Brisbane left a message on my Website guest book, and I also got a message from Jo Watson in my blog comments.

As yet there is no Australian Amazon. I managed to find an Australian supplier, but it would have cost more than double the Amazon price.

I was beginning to think that my Antipodean marketing campaign was never going to get off  the ground when in stepped my Canadian friend, Wally, with information that you can get Tasting the Wind Shipped free wherever you are from: the Book Depository .

So that’s a Canadian, helping an Australian to buy a book by an English author. Isn’t the internet a wonderful thing!

I realised from Jo’s address that she worked for Scope . We have corresponded and it turns out that she is a speech pathologist (Over here we’re more familiar with the term speech therapist.)

She also said:

I can’t wait to get my copy in the mail.  I will review it and submit it to some of our publications here in Australia. I think AGOSCI would be a good one.  It is our national publication for people interested in the needs of people who don’t use speech to communicate.   

It is very gratifying to think that someone I have never met will be spreading the word about Tasting the Wind on the other side of the world.

Thanks Jo!


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