Saturday, 26 October 2013

Dyslexia Blog - Sorry but my needs really aren't that special

For those of you who have read my dyslexia blogs before, you may wish to skip this paragraph as it is just the background. If you haven't read my dyslexia blogs before, here is a little preamble and introduction, so you know who I am and what I do and why I write this stuff. For those of you who know the story, skip to the end of the paragraph for todays installment. Let me give you a bit of Background so you know who I am and what I do. I was born in 1962. I didn't start talking until I was 4 years old (at all, not a single word). My parents thought I was deaf. My reading age at eleven was 5. When I was fifteen I started a rock and roll band called the False Dots, the band is still going strong. When I was 16 I started a business called Mill Hill Music Complex (although then it was simply called the studio), a rehearsal studio, as we had nowhere to rehearse. The business has grown into a very successful enterprise, one of Londons biggest and most well respected independent studios. We now have 16 studios and a music shop and also have a photography/video studio and a dance studio. I also have done IT work, mostly on a freelance basis since 1983. In 2012 I also moved into film production, producing two highly acclaimed documentary films, both of which had screenings at the House of Commons. When I was 31, a friend suggested I had a dyslexia test. To my surprise I was told I was moderately dyslexic. This made me interested in the subject. To my amazement, what I have learned over the years is that my lack of educational aptitude, my feelings of anger and injustice and the core of my personality have been formed by the fact I cannot read words in a linear fashion.

A man I have huge respect for, who has an adult daughter who suffers from Downs Syndrome sent me an email querying the blog I wrote this week entitled "The Scum of the Earth". His specific query was that I hadn't specifically mentioned people with learning difficulties in the comments I was making. He was concerned that the abuse adults with learning difficulties receive in some institutions is becoming invisible. He was of course right about his comments. Often, in hindsight when I read comments I wish I'd said things in a different way and raised additional points. Whilst this was one case in point, I must admit I am not quite sure how I'd have phrased it. You see I have a small problem with some of the terms we use to describe the various disabilities we have to face. Take the term "learning disability". As someone who had "learning difficulties" at school, I find the term to be too broad a brush. I had extreme problems with reading and writing until I was about ten years old. I also found maths challenging and couldn't do long division until I was at secondary school. It just seemed like an impossible challenge. Once i developed a coping mechanism (with no help from anyone) and understood how I had to train my brain to learn, I was able to cope. I didn't shine but I got nine O levels and three A levels, amazingly passing an O level at Grade C in English language and doing A level Maths. 

I have found that I read at around 2/3rds the speed of an average person. Think this through. Exams are timed to allow enough time to complete the paper. If you have my level of dyslexia, this means that realistically you can only get through 66% of the paper. Therefore to get anything above a C grade is pretty much a miracle. Like most people I devised a strategy for dealing with exams. I'd skim through and do the easiest ones first. If I was going to miss out questions, I'd miss the ones I couldnt do anyway. What it did mean was I never ever completed an exam where I felt I'd done it justice. Even worse was the numerous occasions where I'd misread a question and given completely the wrong answer. Again a product of not having enough time. Let me give you an example. If I look at a newspaper headline for 1 second and write it down and then look at it again properly, often the two things are completely different. I tried this with yesterdays Guardian. On page 5 there is a story about Prince Charles. When I briefly glanced and wrote it down, I wrote "Charles doesn't get what people are on about". What did it really say? "Charles: People don't get what I am on about". If this was part of an English exam and at the end it said "Discuss", imagine the scope for things going wrong. Now in normal everyday life, I don't look at things for one second, I look at them for far longer, until the jumble of words is clarified. I read every sentence a couple of times, sometimes three if it lacks sense and context. It's just that in an exam setting, you don't have the luxury of time and you also have added pressure. The dyslexic brain tends not to read words in a linear fashion, so we have to reassemble sentences. Although I am 51 years old and reasonably successful and intelligent, I still ask my wife to fill in application forms etc. If I do, I tick all the wrong boxes. The issue with the term learning difficulties for me is that society perceives the term as one of separation. 

When people look at me, they do not think "learning difficulties". I listened to a conversation on the train between two people on the subject. One man was telling the other that he was annoyed at the school his daughter was attending, because she'd been classified as having "learning difficulties". His concern (using his words) was that she now had it on the record and that she'd be classified "with all the spastics and other freaks". His daughter was moderately dyslexic and needed some help. He seemed to have a problem with her being separated from the rest of the class and "stuck with a load of kids dribbling in wheelchairs". Then he gave the punchline. He felt that as she was only getting an hour a weeks special help, it was a waste of time. His solution? He was getting his daughter private tuition and she'd come on in leaps and bounds in only three weeks. 

It is clear to me that his problem was simply one of labelling. His assumption that "learning difficulties" = "spastics in wheelchairs dribbling" was one of extreme ignorance. For many confined to wheelchairs, education is no issue at all, if your brain works properly you can achieve. I wondered what my travelling company thinks of Professor Stephen Hawkings? Having assisted as a helper with a charity for people with disability, I've seen countless examples of people talking to the person pushing the wheelchair rather than the occupant as they felt the person in the chair was a moron. The classic case was when another helper fell and broke her foot. She spent the rest of the trip in a chair and said it brought home to her the way perfectly intelligent people are treated, purely because of their lack of mobility. 

Another term I don't particularly like is "special needs". I have given the issue a lot of thought and I have concluded that what most dyslexics have is not "special needs" but extremely mundane ones. Is it too much to ask for teachers to get training in helping dyslexics. Is it too much to ask for schools to give such pupils extra help. My travelling companion claimed that the school had failed, because his daughter had come on in leaps and bounds with 1 to 1 private tuition. My assumption would be that any child would see an improvement in results with private lessons in subjects they were struggling with, regardless of dyslexia. The difference is that for dyslexics it is imperative to identify and help them. The alternative is that many give up on education. 

Let me put a proposition to you. What is the alternative to giving dyslexics a proper education? Well there are several outcomes. If they are lucky, like me, they figure it out for themselves and do ok. Sadly there are surveys of the prison population that show as many as 60% of prisoners may be dyslexic. If you are intelligent, but can't succeed at school and always feel like an outsider, drug and gang culture can seem like an attractive alternative.  Drugs can take away the feelings of otherness and replace them with oblivion or euphoria. Drug dealing can offer access to cash in quantities that would be impossible by legal means for someone who is unqualified for anything. Gang culture can offer kudos and status for those who have always been laughed at, bullied and picked on. Sadly all of these are very short term fixes for long term problems. Such lifestyles end happily for few. Occasionally there are cases where people manage to use the experience for positive benefit, developing themselves once they have realised that they don't need drugs and gangs for confidence and happiness. For many though, the damage is too great and too devastating. 

The tragedy is that for many of these young people, if our educational system was fit for purpose, all of this could be avoided.  Let me give you two hypothetical examples. You have two boys born today. One is called Jimmy and he's born to a well off middle class family in Barnet. The other is Johnny and he's been born to a deprived background in a high rise flat in a sink estate. Both have an IQ well above average. Both are dyslexic.What will Jimmy and Johnny be doing in the year 2033, when they are twenty? No one knows. What we can say is that on the balance of probability, if both have problems with the education system, Jimmy's parents can throw money at the problem, using private tuition, special educational help and all manner of technological aids to help his educational achievement. It doesn't mean he'll do well, but he has a much better chance. For Johnny, whatever his parents intentions, £30 an hour for private tuition is prohibitive. Unless the school can provide the technology (and many schools in deprived areas have kids with far bigger problems than dyslexia) he will be left to fend for himself. Wheras Jimmy will be shuttled around from Tarquins house in the mum/dad Taxi service, Johnny will be hanging around with his mates on the estate. Again Johnny may make all manner of choices, but when offered kudos and cash in gang culture and no prospects from the local economy, his opportunities are far more restricted than Jimmys. 

Take things forward another thirty years. Johnny and Jimmy are now 50. They have the same IQ. Would you bve surprised if Jimmy had turned his experiences with dyslexia to his advantage and done well. Would you be surprised if Jimmy owned his own business, had his own house, had a wife and a happy family. Would you be surprised if Johnny had the same things? 

I volunteer at the Passage daycentre for homeless people. I was chatting with one of the clients a couple of weeks ago, who was my age (51). He is dyslexic. He was clearly very intelligent, as well as clearly caring and kind. He didn't seem to have major issues with drugs or alcohol. He confided to me that his problem was that he couldn't cope with pressure and couldn't read or write properly. He said he was getting some help with it from the centre. He told me his only problem was he couldn't manage his money. He'd lost his accomodation as he'd been hit by unexpected bills and didn't know what to do. He'd simply walked away and left everything - job, family, home. It made me think. If you can't read effectively, how do you cope with things like bills for council tax?

So anyway, I locked myself in my meditation room (well actually I sat on my own in the pub and had a pint of Guinness) and thought about it. Special needs, learning difficulties? When it comes down to it, there is a simple way to classify people, where you can easily assess what their needs are.

1. People who can read and can manage their financial affairs
2. People who can read but can't manage their financial affairs
3. People who can't read but can manage their financial affairs
4. People who can't read and can't manage their financial affairs

For the sake of this blog, lets look at people in the third and fourth groups only.  Here there is a few simple questions. The most important is "Do they have the potential to learn to read with help". If they can learn to read (and by learning to read, I mean able to read and understand council bills and letters from official authorities, not just "jack and jill" books). If we can fix the reading issue, then we can solve many problems. My view is that no child should ever leave school unable to read effectively, unless they have such severe medical issues that it is not practical. Every schoolchild should have their reading properly assessed at age 11. Any child that cannot read should get priority and be given any possible resource that would help them. Any school where there is a problem with helping children read should be put in special measures and the problem should be fixed. 

I believe that dyslexia is the major cause of illiteracy in the UK (amongst the native population). I believe that if we took action to fix this, many other social ills would abate. A friend of mine spent a year in Bellhaven prison in Oxfordshire a few years ago. He told me that he was shocked at how few people could read. He said that what was even more sad was that as a result many people would simply stare at the wall all day. He was able to take solace in reading. Given the dyslexic population of prisons, this doesn't surprise me at all. We should make education and reading skills for the prison population a major priority. I asked my friend about this and he said that people were scared of education and hated it. I asked him how he thought this could be changed. He said that people in prison play the system, so if you gave people better food and priveliges in return for enrollment in courses and progress in the subjects. 

I don't know all the solutions, but I do know that we need to address this issue. We are failing our fellow citizens. I don't think that the needs of dyslexics are special, unless you consider the rigth to an education "special". 

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