Too high a price?

TOTKO's web developer Sarah, who runs her own company getting people with dyslexia interested in literacy called Dysbooks, writes our blog for us today.  Spurred on by the comments made by the now resigned and out of office Cllr Colin Brewer, Sarah asks the question, if young people with SEN are too much of a cost to society, what would a world look like without us?  Sarah is diagnosed Dyslexic and has a degree in English and Creative Writing.  

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Councillor Colin Brewer has said disabled children 'cost too much' and 'should be put down'. He made the comments to a member of Dyslexia Cornwall, at an event designed to help councillors understand issues affecting disabled people.   His excuse? Apparently he wasn't in the best mood, and wanted to provoke a response. Provoke a response he has, though not the sort he seemed to have had in mind. 

Here is the BBC news story in full: http://www.bbc.co.uk/news/uk-england-cornwall-21594109 

While it does not appear Mr Brewer actually thinks vulnerable children should be euthanised, it's deeply troubling this would even enter his head, let alone come out of his month and be directed to someone who was trying to support people with learning disabilities. Such poor judgement should be of great concern to his constituents, regardless of any suspicion of prejudice.    He has since resigned after growing and mounting pressure from disability awareness organisations and charities, as well as general disgust from the general public.

But what worries me most about this story, though, is that while no decent human being would think disabled children should be killed, there are those who think they do cost too much. I've heard this a few times, from parents who have non-disabled children. They worry their child is some how losing out because disabled students needs are being met. It isn't always money they worry about, more often it is simply time. 

They do not understand the difficulties disabled people face, and how life changing the smallest amount of support or understanding can be; that it can be the difference between a life of independence, and one of constant struggle. 

Others think we are a bit of an inconvenience. That they should not have to adapt anything, including the language they use, for our benefit. 

Too many people are ignorant about disabilities, especially those they cannot see. Not just about what it is like to be disabled, but the value disabled people bring to the world, and to their lives, every single day. 

There used to be two little girls in this picture, one was me, the other my cousin. We both have dyslexia. This means we struggle with things most people find easy; reading, writing, remembering things, and staying organised, among other difficulties. We needed extra help at school to develop our literacy skills, I had an especially slow start to my education, being told I would never read or write. 

What's become of us as adults? 

I have a degree in English and Creative Writing. I spend my days writing things I hope to publish, working in a bookshop, and helping with projects that support people with learning disabilities. I'm TOTKO's Web Developer, I'm editing an anthology of dyslexic writer's work, and I have a website called dysbooks.com, which provides information to help dyslexic people enjoy the written word, and I am helping set up a mentoring scheme for dyslexic students interested in the arts. 

My cousin has just graduated from University, and is now working as Student President. She was elected by a more than comfortable margin, and has worked multiple jobs to support herself during her studies, a one point doing three at once, and she worked on the 2012 Olympic Games.

We aren't special...we are just two ordinary people with learning disabilities. I'll leave it up to you to decide if the time and money spent helping us become literate was worth it, and to consider how much we could have contributed to society if we were simply ignored. 

You don't have to look hard to find dyslexic people who are remarkable, though, Richard Branson, William Churchhill, Keira Knightley, Orlando Bloom, and Olympic medallist Bruce Jenner are just a few. Now think of all the other learning disabilities and differences, dyspraxia, dyscalculia, ADHD, autisim, we get Florence from Florence and the Machine, Einstein, my wonderful boyfriend Mark, who makes sure TOTKO's books balance...I've not even covered physical disabilities yet! 

The truth is disabled people are employers of thousands upon thousands of non-disabled people, we make the films they watch, write the books they read, record the music the music they listen to, we heal them when they are sick, push forward their understanding of the universe, we teach them in our schools, and many of us love them. 

What if we were all taken out of the picture?

Would the world be a better place without us? Do we really cost too much, or do we deserve the basic respect to have people think about what they say about us, and to make sure it is respectful, before the words leave their lips? 

TOTKO wants to help build a world where no one thinks people with disabilities, especially learning disabilities, are some kind of nuisance. Where young people recognise their own value, and with the help of wonderful teachers and parents, can over come the challenges they face, whatever they may be. 

Help us make this world a reality by fighting ignorance with us, share this blog, and let people know that disabled children do not cost too much...their value is immeasurable. 

Mick Hucknall has Dyscalculia.

Most people have heard of dyslexia.  Less but still a substantial number have heard of dyspraxia.  But hardly anyone has heard of Dyscalculia. Its a neurological condition which impacts the brains ability to calculate and visualize numbers.  This in turn effects the brains ability to balance, coordinate, measure distance, time and speed, and also results in a short term memory index recall.  An estimated 3% of the worlds population are currently diagnosed and this begs the question, is it only 3% because it’s genuinely rare, or is it only 3% because not enough people know enough about it?  We believe it’s a bit of both, and its something we care deeply about changing and as such always include it in our workshops for students, parents and teachers.  

Today something really awesome happened for people with Dyscalculia.  Mick Hucknall, the lead singer from Simply Red (ask your parents!) has come out as having the condition.  And with it, has shed some light on the roots of his creativity.  He says in an interview with the Daily Mail when asked about a life changing moment...

“Going to art school when I was 16. I’d been at a grammar school from 11 to 15 and because I suffer from Dyscalculia – number blindness – I was made to feel stupid. Art school opened up the world of creativity for me and I loved it.”

In saying this, Mick has highlighted something that most people with SEN have known for a very long time already.  When your not so good at one thing, your brain works to relocate the skills elsewhere.  Children who are struggling with literacy due to dyslexia, have been known to develop above average skills in art, music and sports.  Children with autism who are struggling with social situations, develop incredibly intricate and precise memories, often going on to excel in science, computing and technical based fields.    And Mick Hucknall, is no different.  Did you know that dyscalculates often report having a sensitivity to sound and can learn to play music purely by ear, without the need of notes?  

This idea of encouraging people to see disabilities, difficulties and differences as simply being bad at one thing, but great at another, is really central to a lot of our work.  Teaching teachers to recognize the relocation of skills in a child with dyslexia, is an invaluable way of helping a teacher to keep a child on track at school by highlighting natural skills.  Talking to parents about all the amazing people we know who are dyspraxic but who now have academic based degrees, is a great way to give hope and to offer reassurance on an often difficult journey.  And getting young people to see that it doesn’t matter what you can’t do, only what you can, is a stigma bashing mantra for everyone, whether they have SEN or not. 

We really commend Mick for being brave and speaking openly about his dyscalculia and hope he continues to share the story behind his creativity.    

You can read the full interview with Mick here” http://www.dailymail.co.uk/femail/article-2282850/Mick-Hucknall-I-suffer-Dyscalculia--number-blindness.html

Why peer based support can change support for learning differences

When we go to meetings, there is a question we always hear. “What does TOTKO stand for?”.  When we tell them, they always smile.  TOTKO stands for “Takes One To Know One”.  What it means is every single person behind TOTKO has a learning disability, has first hand experience of living with it, championing it, and knows exactly what advice to offer to a young person going through the same.. Through talking from first hand experience as part of our peer based teacher training, student confidence boosting workshops and support events for parents, we feel we are coming from a fresh and new angle that encourages community, support and empowerment to those with learning differences.  On top of this, we have worked as learning support assistants, private tutors, LD ambassadors and workshop leaders.  

Picture this scenario...  it’s one we encounter a lot.  There’s a person struggling in school.  He has Dyslexia, so therefore a short term memory index recall and this means he forgets to do his homework.  So his teacher gives him a diary, which of course involves him writing in.  And writing of course, is part of the problem.  To a young person with Dyslexia who is struggling to the extent they are forgetting their homework, being asked to write something can become a psychologically difficult and stressful task.  And so that homework diary never gets used.  

What about those with dyscalculia who just get given calculators?  Or those with ADHD simply told to “just concentrate”?  

If you’re one of these people, we understand exactly why these scenarios were stressful.  TOTKO exists to ensure that the people around you like parents and teachers understand too, because we too are dyslexic, and we too are dyscalculate, and autistic, and have ADHD!  We believe in exploring alternatives forms of support through sharing our own experiences of what has worked for us.  

Someone we are really proud to call one of our own and who is part of our organization is Sarah Fearn, the founder behind Dysbooks.  Sarah has a degree in English and Creative Writing.  It’s not what you expect from someone with Dyslexia...  Sarah has found ways of by passing her Dyslexia and by having her involved we are hoping to show others how they can too through her story and experiences. But to do that we need to approach support differently.  Google “Dyslexia” and you see a page of links about its limitations.  Isn’t it time that changed?

Sarah says of peer based support.

“It's all well and good being told you can do amazing things by someone who hasn't experienced what you have first hand, but it's nothing like meeting or hearing from an ordinary person who has tackled and over come the difficulties you are facing. It's more real, and more relatable. We aren't people who have just learnt about learning differences out of books, we live them everyday, and know instinctively what is going to help kids like us, and what isn't. We understand and can relate to people with LDs, and those supporting them, in a way no one else can.”

Why is TOTKO different?  Because we are different.  We are offering peer based support, first hand knowledge that goes far beyond any textbook, real people with real stories and real advice, and turning the way we support learning differences on its head.  

If you too believe in an alternative approach to learning support, check out our video below on ways you can make it happen for you, your child or your school.  Don’t forget to follow us on twitter @hellototko 

My big dyslexic secret

"When recently asked to donate a secret to a creative project I had to really think. It's an odd question to be asked. You know you've got one somewhere. Now it's just a question of finding it, prising it out of its hiding place and shaping words around it... And there it was, so obvious now, the secret that I carry round with me all day every day. I whispered 'I'm dyslexic'.

And I couldn't be more disappointed! No shock, no horrified glares, no awkward silence, no reaction at all. Blank, disinterested faces. I might as well have said 'I'm breathing.'

So what did I want? What did I expect? A reaction? A gasp? Disbelief? Sympathy? Judgement?!

At first I put the lack of interest in the room down to knowledge: of course it's because they can tell I'm dyslexic, it's practically written on my forehead, in big clunky sprawl, with spelling mistakes. But no, turns out that quite simply my audience hadn't been phased. In fact, with about 4 people there, I most likely wasn't the only one. However, I may well have been the only one to define dyslexia as a secret. That's my problem, not theirs. 

I blame it on late diagnosis. Identity is a complicated thing and it takes years to form some sort of self, if ever. At the same time, sadly, you're forming ideas and associations of other people, and other identities. When I was at school, dyslexia was not something I could possibly have: I could read and write don cha know!

So when I was diagnosed, aside from relief and penny-dropping moments, I had a little battle to deal with - dyslexia was for the kids in school that needed extra time and had a special corner of the classroom, not for grade A students who went on to university. And clearly, that was not a battle I'd won yet.

So can we get used to no reaction? Learning difficulties or whatever you call them are not obvious, nor should it be our little secret and while I'm busy imagining what evil judgements other people are making about me, it seems it's my own prejudices that need an update.   

Are learning difficulties secretive? Do they define you? The more self awareness the better, right? So now I have a new secret, a proper one. 'I'm ashamed of being dyslexic.”  But I shouldn’t be."

- Anonymous  

The #shhh2013 project is anonymously collecting secrets to use in performance. Donate here http://svy.mk/114KRkc

Visiting New North Academy in Islington

At the start of this week, TOTKO dropped in for a meeting with the amazing New North Academy  in Islington.  We'd heard a lot about the school and its incredible building, so it was really amazing to go in and see it for ourselves.  We were given a tour by Betty who works as part of the schools Special Educational Unit, and it did not disappoint.

New North Academy moved to its new site about 4 years ago after being in an old victorian building.  The new building was built with education and children in mind and the entire building utilises space to maximum effect to create an open, air filled, bright and happy atmosphere to learn.  There's even an apple orchard and a roof top garden!  The building is dotted with areas where children can go to unwind such as a sensory room and some comfy sofas next to lovely big fish tank.  As well as their inclusive attitude towards SEN, which is part of their school as a whole as opposed to a separate entity, the school has a massive focus on community and changing the perception of what a school is.  To walk in to the building, you wouldn't realise it was a school if it were not for the children's drawings on the walls, the displays and the corridors that run alongside glass fronted classrooms filled with learning.  Instead it is like going in to an art gallery or a museum - and that's exactly the point.  New north Academy does not look like a school, and deliberately so.  This has had an impact on the children who are reportedly doing better in their studies and responding better to lessons now they are in the new building.  This idea of changing the way we present school to children was something that really caught our attention as a large part of the ethos behind what we do in our workshops with children, is to help them see school differently.

For young people with SEN, conditions like Dyslexia can becomes as much psychological as they are neurological.  Looking at a sheet of writing for someone with Dyslexia can become a traumatic experience.  Just going in to the classroom becomes something upsetting.  And soon this has the potential to develop in to what we term as "school phobia" which is when the child begins to associate school itself with unhappiness and this affects their education all round.  We like to challenge this through our workshops by making education personal to the child and getting them to see that all of it can add up to taking them somewhere in life, whether they are SEN or not.  We try to get them to see it isn't about what you can't do, but celebrating what you can.  And most importantly realising, it's ok not to be perfect.  We believe this is an essential mantra not just for students with SEN but young people in general.

It was really incredible to see New North Academy and see that philosophy in action and on such a big scale.  TOTKO is looking to deliver a parents and guardian support workshop as well as a disability awareness assembly in the school in the hopefully not too distant future.    If you'd like to join the likes of New North

Dyslexia: Only part of the story.

This evening, Channel 5 air the latest documentary on dyslexia, “My Secret Past” which follows the story of ex boyband member Shane Lynch and his dyslexia.  If you miss it, you can find out more information here - http://www.channel5.com/shows/my-secret-past/clips/shane-lynch-dyslexic.  

It is the latest anecdotal piece to support the idea that training on dyslexia should be a mandatory part of teacher training in the UK.  Understanding dyslexia is currently not included in a PGCE, the UK’s most widely held teaching qualification, so it’s a move that makes sense.  You wouldn’t teach a deaf child without an interpreter, so by the same token you shouldn’t teach a dyslexic student without the correct training.  The initiative is spearheaded by the likes of The British dyslexia Association and Dyslexia Action. 

The latest studies show that up to 1 in 9 people have dyslexia.  People with dyslexia, neurologically learn different from those without.  There’s not only the issues with reading and writing to contend with, but also like most  learning difficulties, the condition also impacts the short term memory as well as coordination.  This means to teach and support a young person with dyslexia, you need to be working in an entirely different way to how you'd work with a non-dyslexic student.  If a dyslexic student is forgetting to do homework giving them a homework diary to write in is about as innovative as a chocolate fireguard.  And finally, if we look at statistics, we find out why it is so vital that teachers are trained to support young people with dyslexia.  Approximately 20% of the UK’s long term unemployed are dyslexic.  In this current economic climate, these types of debates are vital as the UK can no longer afford to not address the impact of a lack of support for special educational needs.

The philosophy behind the idea is all to do with the reclassification of dyslexia.  As of Equalities Act 2010, dyslexia was recognized as a learning disability and therefore those who have it are entitled to extra support.  The change undoubtedly forces schools and workplaces to think about dyslexia and the recent drive through the media and high profile organizations with equally high profile celebrity endorsers, has meant the condition’s profile is soaring.  This is an amazing thing, but there’s a problem...  What about other learning disabilities?

The debate in to mandatory training for teachers in dyslexia, presents issues of consistency and highlights further topics for discussion and thought.  Perhaps the debate shouldn’t be about dyslexia, but about the concept of learning disabilities as a whole.  The Equalities act also lead to dyspraxia, dyscalculia, ADHD and forms of autism also being classified as disabilities.  But where are they in all this?  Prioritizing one condition over  another goes against the very laws we set up to support them.   This isn’t what anyone wants.  

Even if we take a step back and look only at dyslexia, it is often linked to other conditions such as dyspraxia and ADHD.  Supporting all conditions doesn’t need to complicate matters.  In fact, it would be more cost effective as studies suggest dyslexia isn’t the only trend affecting statistics in mental health, crime and unemployment.  

• 36% of young people with learning differences  in the UK are also suffering from mental health conditions.  
• 83% of adults of working age with mild to moderate learning disabilities (including dyslexia, autism, adhd, dyspraxia and dyscalculia) are unemployed.  
• Over 50% of young people with ADHD get excluded from school.    

With gloomy statistics like these, we must ask ourselves if we should be doing more to raise awareness of other conditions?  Perhaps we should be talking more about support for learning disabilities in general as opposed to support for just one in particular?  And most importantly we must ensure that those the Equalities Act of 2010 referenced receive the same level of support as is being suggested of those with dyslexia.  A possible solution would be special educational needs training for teachers as part of a PGCE.

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Discuss this article and the channel 5 programme on the hashtag #mysecretdyslexia over on Twitter.

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TOTKO works to help provide support for those with and affected by learning differences, learning disabilities and learning difficulties.  A large part of our work is challenging stigmas and providing an alternative, more positive, portrayal of conditions such as dyslexia, dyspraxia, dyscalculia, ADHD and form of autism.  Why not join our conversation on twitter @hellototko  

Autism and crime in the UK

Exactly one week ago today, twenty innocent children were gunned down in their classrooms in Newtown, Connecticut.  First came understandable anger, grief and anguish at what had happened.  But as the days went on, the tone turned towards questions: who, why and how?  Later in the week, another question was added to the debate: was Adam Lanza autistic and, if so, does this help us to understand the 'why'?

Members of the autistic community found themselves answering questions like these.  Were autistic people killers?  Were they all violent?  The answer was a resounding “no.”    So why then was autism thrown under the proverbial bus?  And why did we spend so much time on blame, when we could have been talking about support, or helping to explain a difficult condition?

Away from debates about guns and security in schools, what the UK needs to be paying attention to here is what support we are offering in our schools to young people with autism.  As although there is no connection between autism and violence, there is a connection between autism, unemployment and mental health.  

A study of young people in the UK found that 8% were suffering from mental health issues.  But when we look at young people with learning disabilities in the UK, including autism, that number jumps to 36%.  Another study showed that amongst adults of working age with mild-moderate learning disabilities in the UK, and again including autism (as well as other conditions such as ADHD and dyslexia), 83% were unemployed.

And once we are into that territory, there can be a very clear connection between trends such as mental health and unemployment - and crime.   26% of the UK’s benefit claimants have received a caution or have been convicted of a crime in the last 10 years.  Autism effects 1 in 38.

You might have seen the documentary Lifers which featured an autistic criminal.  On reflection, he suggested that further support in childhood may have significantly changed his future.



Under the Equalities Act of 2010, conditions such as autism are recognized as learning disabilities and therefore must be supported in education.  It may then come as a shock to you to know that the most widely-held teaching qualification in the UK (a PGCE) does not currently include training on working with children with special educational needs, and unfortunately that includes those with autism.  Add in to the mix the current economic climate and schools that cannot afford enough learning support assistants to support all the children who need help, and you’re getting a pretty clear picture of just how we are currently supporting young people with autism in UK schools.

Without a doubt there are many schools that go the extra mile to support those with autism and their efforts are commendable.  But this isn’t the case everywhere as resources are too stretched, the information isn’t available -  teachers are left with their hands tied.

As we reflect on what has happened in America, we should be asking ourselves what we are doing to tackle the vicious cycles that can so often be the causes of crime in our society.