Through The Eyes of Me – Writing a book for my autistic daughter

Jonathan Roberts has written a story book about his daughter, Kya, who was diagnosed with autism. After a great reaction to his book from Kya’s family and the professionals who work with her, Jon is hoping to publish it as a paperback.

Getting a diagnosis

We adopted Kya at 17 months old. We realised fairly soon that there were differences between Kya and other children of her age and we initially put this down to post adoption attachment issues. Kya’s Health Visitor raised her concerns and referred her for an assessment with regards to her development delays which resulted in a diagnosis of severe autism.

As Kya’s parents we’re blessed –  she is a lovely, placid happy child and I wanted to capture her lovely little quirks before we forgot them so I started to record them. I started writing things down and showed my wife Sarah. She liked them and we thought it might make a little book.

When Kya started mainstream school, the children in her class asked the teacher questions about her, like:

“Why is Kya allowed to run around?”

An illustrated page from Kya's book. The text reads: I am always on the move. I don't care for sitting still. I love running.

Kya has lot of energy and finds it difficult to sit still. It’s hard for us to keep up with her sometimes, particularly when we are out shopping and we forget her rucksack with reins. Luckily, we live near some long, sandy beaches and open spaces where Kya can run around in a relatively safe environment but we still have to keep our eye on her all the time! She doesn’t understand danger so she’s always climbing stairs, railings and on top of kitchen work tops. It can be very tiring!

“Why won’t Kya talk?”

She has difficulty concentrating and finds it hard to communicate. She has delays with her speech and often babbles but she is learning a few words now. When we read the book to her, she points and says, “Kya!” and looks at me for approval. She loves looking at the book but she has a tendency to rip things up, it is like her sign of approval, as if she is multiplying things as opposed to destroying them.

Picturing a book

And illustration of Kya and her Dad swinging her aroundI wanted to create a nice, pretty looking and simple to read book explaining her differences and beautiful quirks. I wanted the book to be illustrated simply yet beautifully.  We got in touch with Hannah Rounding, who was spot on with her pictures even though she had never met us!

We hope Through the Eyes of Me will help siblings, classmates and anyone who knows of someone on the autism spectrum. We’ve just had the great news that a publisher wants to publish the book so we hope it will be available as a paperback very soon.

In the meantime, you can get Through the Eyes of Me ebook!”

Check out our Pinterest board of kids books for siblings of disabled children.

Reform is needed to halve the disability employment gap

The Government’s Green Paper consultation on Work, Health and Disability closed last week. Find out how we responded to the consultation and which areas we argued need action from the Government.

The Government has made a welcome commitment to halve the disability employment gap – the difference between the employment rate of disabled people and non-disabled people – which has stood at around 30 percentage points for over a decade. If the Government is serious about increasing disability employment, then it must tackle the barriers individuals face to entering, staying and progressing in work.

Improving out-of-work support

Too many disabled people aren’t getting support to get into and remain in employment. Where disabled people do access support, at Jobcentres or through employment support schemes, many feel it is too generic and does not take account of their needs or interests.

It is vital that all disabled people who want to work have access to voluntary, specialist support that is tailored to their needs. Taking part in any form of employment support should be completely voluntary for disabled people, and have no impact on the financial support they receive.

As well as this, Scope wants to see a total reform of the “fit for work” test, the Work Capability Assessment (WCA), which decides whether someone is able to receive Employment and Support Allowance.

Currently, the WCA fails to capture the range of barriers to work that disabled people face, which means many individuals are not getting the right support to move in to work. That’s why we’re calling for the WCA to be replaced with separate assessments for financial support and employment support needs.

Supporting disabled people in work

New research by Scope has found that in the last year 58 per cent of disabled people have felt at risk of losing their job because of their impairment or condition. That’s why it’s so important that once disabled people take up jobs, the right support is in place to enable them to stay in work.

Something we want to see is an expansion – and better promotion – of Access to Work, a scheme that provides disabled people with financial support to work. We also want to see the requirement to take Statutory Sick Pay in consecutive blocks to be lifted. This would give individuals more flexibility in taking time off from work, for example through part-time sickness absence or a phased return to work.

Working with employers to drive change

Efforts to halve the disability employment gap will only be successful if we see a shift in how disabled people are perceived in the workplace. The need for action is clear – 85 per cent of disabled people feel employer attitudes haven’t improved since 2012.

Building on progress made with other aspects of workforce diversity, employers should shift from compliance with the law to taking a more proactive approach to attracting, recruiting, supporting and developing disabled employees.

For instance, the Government’s Disability Confident scheme – which provides guidance to employers on hiring disabled people – has a Business Leaders Group which is well-placed to drive best practice among employers through new research and peer-to-peer networking. However, it is crucial that this group has sufficient scope and capability to realise such an ambition.

Next steps following the Green Paper

Scope welcomed the opportunity to respond to this Green Paper. However, this will only lead to change if Government and employers take meaningful steps to tackle the barriers disabled people face to entering and thriving in work.

Therefore, we would like to see a cross-government strategy for disability employment – presented as a White Paper – as soon as possible. This should include a range of reforms to support disabled people in and out of work, along with clear indicators to determine the success of these. It is vital that any proposals are informed by the experiences of disabled people.

Find out more about Scope’s work to tackle barriers to employment for disabled people.

Joan Ross: A life remembered, 1939 – 2017

Joan Ross, a contributor to Scope’s Speaking for Ourselves project, died in January. Born with cerebral palsy in 1939 (when disabled children didn’t have to have an education), she went on to become  a language teacher, girl guide leader, advice officer for 17 years at Haringey Disabilities Consortium and a published author.

Using extracts from her interview in the British Library Sound Archive, we celebrate her life.

Going to schoolJoan as a child in a black and white photo

“My mother took it for granted that I was entitled to education like everyone else… She wanted me to be able to read so that I could read to myself and so on. She saved for me to go to a little private school very near where we lived, but they refused to have me so she tried the local infants school that was all on one level, and they were very reluctant. The headmistress did want to take me, she was willing to have me, but the education authority weren’t happy about me going and I didn’t have to go to school; it wasn’t compulsory.

So my mum decided to go to the education offices every day to ask them when they were going to find a place for me at this school she had in mind, and one day when she went she heard one of them say, ‘That Ross woman is here again’, and so she said, ‘Yes. And I’ll be here again tomorrow until you offer me a place for my daughter at school’.

So they did agree to place me in the school that she’d chosen, on condition that she came there and took me to the toilet twice a day, maybe more, fed me at lunch time; the teachers would teach me but nothing else, no personal care. But she was willing to do that and I was very happy there.”

Brownies and Guides

“We had a uniform which made me feel one of them. Our school icwbicc-24didn’t have a uniform so I enjoyed having an identity. I enjoyed the badge-work in Guides because that was way of proving myself.

“We didn’t really take a lot of exams and that at school, so this was a way of stretching myself and proving myself. The Guides, once they realised that I was just the same as them, except I was in a wheelchair, accepted me and I really felt one of them.

“After I left school. I was still in the Rangers, the senior part of the Guides, and one of the things the Rangers did was help with Cubs and Brownies, so I was delighted when I was asked if I would like to help with a Brownie pack, and I did that for about a year, or maybe longer. And then my own church Brownie pack was without a leader and I longed to offer to take over the pack but I didn’t want to do that because I didn’t want to be turned down. So I was delighted when I was approached to actually do that, and I did it for 15 years.

And it really compensated for not working because it gave me an important job to do which took a lot of time but was very worthwhile.”

Looking for work

“I kept on looking out for jobs. I went to a few interviews and some of them were better then others, but nothing very promising.

“There was nobody to advise me. I went to the job centre to see a disablement resettlement officer, but she really didn’t seem to have a clue how to help me. And so I just looked up jobs and I wrote to the Director of Social Services in Haringey and I did have an interview, which looked quite promising…

“They wanted to set up an advice and right centre for handicapped people in Islington in the day centre, which would deal with telephone enquiries on benefits and also lots of problems relating to disability.

“And I applied for that job and got it and it was an amazing experience.

“I wasn’t teaching but I was helping other disabled people and
carers and expanding my knowledge all the time. I went on training courses and the project was managed by the Citizens’ Advice
Bureau so we were able to go to their training courses as well.

“And the scheme lasted the year and… they hoped that they would get more funding for it to continue but when the year was up no funding materialised, at a time when the centre – it was called ARCH [Advice and Rights Centre for the Handicapped] by the way – and it was really making very good progress and helping a lot of people, and we just couldn’t abandon it because the project wasn’t being
funded. I had another worker – there were two workers on the scheme – the other person was disabled as well, he was called Melvin, and we decided to carry on working for ARCH voluntarily for another year.”

Joan’s commitment to her community then led to her being an advice officer for 17 years at Haringey Disabilities Consortium.

To hear Joan’s interview in full, go to the the Disability Voices website at the British Library Sound Archive.

Joan Ross and Lynda Bellingham
Joan Ross and Lynda Bellingham at the launch of Joan’s book

Read Joan’s autobiography, I Can’t Walk, But I Can Crawl.

 

I want employers to be able to talk to me about my needs

Holly moved to the UK from America over 10 years ago. Being blind, she has experienced many challenges in finding employment.

Here she talks about some of those challenges, bad attitudes she has experienced and what she thinks needs to change to ensure that disabled people have the same opportunities as everyone else.

My first proper job over here was as a nursing assistant on a psychiatric hospital ward. Before I could start, I had to have an occupational health assessment. The woman in the assessment knew that I was visually impaired and she was asking me lots of questions like, ‘how would you see if someone threw something at you?’ and stuff like that. I obviously wanted to say I can see stuff like this but didn’t want to reply sarcastically because the job depended on this.

At the time, I had just moved to the UK, which was very expensive, and me and my husband had no money between us. It was so important that I got this job. We were just living day to day and having to borrow money which was just so miserable. I didn’t want to say anything wrong or make the assessors get mad at me or anything like that.

Holly, a young disabled woman, poses with her dog

It was worse than weird

The assessment was just really confusing. She kept asking me about medical records that I didn’t have any of over here. When she suggested that I should get my medical records sent from the US over to here, I didn’t know whether me getting the job depended on this happening.

Towards the end of the assessment, the woman pointed out that my shoelace was untied and I kind of nodded but thought it would be rude to interrupt the conversation to sort it. Before I’d even had a chance to say that or tie it myself, she leant over and did it for me. She actually tied my shoe for me!

It was one of those things where I just thought, I need to leave before I do or say anything! At the time I thought it was weird. But it was worse than weird. It was condescending and so horrible. It really didn’t imply anything good about what this woman thought of disabled people.

When I got home, I was just really confused and my husband was really upset on my behalf. He didn’t think that I was treated very well.

It was such a stressful time

After all this, I got the job and, because it was such a big hospital, I luckily never had to see her again after that! Unfortunately, this was only a one year contract and due to various reasons, it made me very ill and stressed. This resulted in me having over two years of job hunting and applying for ESA.

Looking for work was such a stressful time. It felt like I already had a full time job sorting out ESA. It was more exhausting than any job I’ve ever had and was just a total nightmare.

Not only was I foreign and disabled, but my qualifications were from a different country and I also now had a massive hole in my CV.

Sometimes it’s hard to separate what’s an effect of being an immigrant and what’s an effect of being disabled, but I think both of these things make employers look at me and say “there’s somebody else who’s easier”

Disabled people aren’t scary!

I think employers need to not be scared! I want them to be able to talk to me about disability.

If an employer could just ask us what we need or what they could do to make it possible for us to work there, everything would be so much better.

It should be ok to ask these things. Disabled people are less work, less scary and much less of a burden than employers think we are. I think there needs to be much more of a willingness to talk and more assurance for disabled people that there won’t be any nasty consequences of asking for what you need, that if you say the wrong thing, you won’t get the job.

I’m not that difficult to give a job to. Honestly!

Holly, a young disabled woman, smiles at the camera

The Government want to know what you think needs to change about the support disabled people get in and out of work. They want feedback on their proposals and will be accepting views until Friday 17 February 2017.

Why we need to see changes in support for disabled people in work

Today we are publishing the findings of a poll which asked disabled people about their experiences of looking for work and being in employment. 58 per cent of disabled people have felt at risk of losing their job because of their impairment.

Tomorrow new statistics will be published that will unveil the size of the disability employment gap. This is the difference between the employment rate of disabled people and non-disabled people, which has remained at around 30 percentage points for over a decade.

The Green Paper on Work, Health and Disability was launched in October and outlines the Government’s thinking about the future of employment support. The accompanying consultation provides an excellent opportunity to feedback on the document and shape future Government policy but closes at the end of the week.

New findings on disabled people’s experiences in the workplace

We surveyed over 200 working-age disabled adults in employment and uncovered that 58 per cent of disabled people have felt at risk of losing their job because of their impairment. To address this, we would like to see Government introduce a new flexible approach towards sick leave and the Equality and Human Rights Commission publish a new code of practice on workplace adjustments.

Text reads: Fifty eight percent of disabled people have felt at risk of losing their job because of their disability
Source: Scope polling of 216 working age disabled adults in employment in England, December 2016

Our research also unearthed how one in five disabled people surveyed (18 per cent) had requested support or an adjustment but their employer didn’t provide them. Employers are legally required to try and make adjustments to support disabled people in the workplace. One in four disabled people (24 per cent) say their current employer does not support them to do their job.

Scope would like to see schemes which support disabled people in work, such as Access to Work, better funded and publicised so that employees and employers are more aware of their benefits.

Workplace bullying or harassment

Text reads: 53 per cent of disabled people have experienced bullying or harassment at work
Source: Scope polling of 216 working age disabled adults in employment in England, December 2016

Our research revealed that 53 per cent of disabled people have experienced bullying or harassment at work, 21 per cent of disabled people had been bullied by colleagues and 27 per cent had experienced bullying from their employer. One in five (21 per cent) go as far as not disclosing their disability to employers, whilst one in eight (13 per cent) of those disabled people we spoke to felt they had been overlooked for a promotion.

Government are rightly focussed on removing barriers to get more disabled people into work, but the barriers that prevent people from progressing and advancing their careers, once in work, must also be addressed. The Green Paper highlights the importance of working closer with employers and changing attitudes towards disability, so it’s important the Government improve conditions for disabled people in the workplace.

Government consultation on disability employment 

Scope want to see the Government deliver on its commitment to halve the disability employment gap and to deliver a strategy that tackles the barriers disabled people face to entering, staying and progressing in work.

The Green Paper is an opportunity for disabled people to share experiences of being in and out of work and feedback on the Government’s plans. At Scope, we think there remains a huge amount of work to be done to tackle the barriers disabled people face entering and staying in work. It’s vital that the whole Government now listens to disabled people’s views on how to do this.

Read more about how you can respond to the Green Paper consultation

The Green Paper doesn’t pay enough attention to the barriers that disabled people face

Having been born deaf, Natasha has always been interested in equality and social justice. She currently works as a photographer as well as an equalities consultant at Disability Wales/Anabledd Cymru. In this guest post Natasha gives her view on the Government’s plans for changing the support disabled people get in and out of work.

The UK Government has published the “Improving Lives: Work Health and Disability” Green Paper. This document highlights the issues of the disability employment gap, access to healthcare and employment support for disabled and people with long term health conditions.

There is much that can be said about the Green Paper, both bad and good.

Taking a medical model approach

The language of the Green Paper is very medical model and highly individualised. The social model of disability says that disability is caused by the way society is organised, whereas the medical model used here, says people are disabled by their impairments or differences.

Natasha smiling for the cameraIt is also a forceful advocate of the “work is good” mantra. They take care to qualify that by saying ‘good’ work, but most disabled people will be aware that the opportunities for good and meaningful work are far fewer for us. It isn’t simply a case of disabled people trying harder, taking pills or going to physio in order to be ‘fit to work’. It often feels that this is the focus of the Green Paper.

This serves to depoliticise disability and that is dangerous for us. We are not disabled by our impairments or health conditions, we are disabled by the external barriers and attitudes in the world around us. That is political. No one individual can change that. It takes all of us together as a political movement to challenge and change those barriers.

What isn’t included in the Green Paper?

Opportunities to work are heavily dependent on many other factors which are barely mentioned in the Green Paper. Do we live in accessible and safe housing? Do we have access to transport to get us to work and back? Are education and skills training opportunities accessible to us? Do we have appropriate support, whether in the form of PAs, social services or appropriate and timely healthcare?

If our most basic needs aren’t being met, the stress of just trying to get by from one day to the next is considerable. How then, are people to cope with the additional stress put on them by a benefits system which isn’t designed to accommodate their needs?

My view is that the Green Paper doesn’t pay enough attention to these extensive but often subtle barriers that disabled people face, whether in work or out of work.

Challenges for disabled people who want to work

For disabled people in work and for those who want to work, there are a range of issues. Do employers understand the importance of reasonable adjustments? Do they value the skills, experience and perspective that disabled people bring to their workforce? Do Jobcentres and Access to Work provide enough support? The answer for many is a clear “no”.

Negative attitudes towards disabled people are a problem, and one that the Government has arguably perpetuated in recent years. A huge culture change is needed to shift the views, aspirations and opportunities focused on disabled people.

The barriers we face go beyond access and attitudes to disabled people. We live in a culture that serves the employer and the profit margin. This is a culture that has created the growth of zero hours contracts; of low paid workers taking multiple jobs just to pay the rent and put food on the table; of a culture that values unhealthy presenteeism and excessive working hours. In short, society values money and not people.

Society values disabled people even less. When discussing disability, I so often find myself saying “if you improve the situation for disabled people, you improve it for everyone else too.” It is a point that too many still fail to understand.

An opportunity to influence change

On a more positive note, the Government is saying “here are some of the issues we’d like to address and we recognise we don’t have all of the answers”. That at least presents disabled people with an opportunity to influence change.

The lived experiences of disabled people are crucial in influencing change. It’s going to take a considerable effort by the Government, the Department for Work and Pensions and others to make good things happen for disabled who want to work. It’s going to take even more effort to create an environment where disabled people can trust the ‘system’ to be there to support and not sanction.

Please take the time to provide feedback or respond directly to the consultation. There are a number of ways you can do this.

To make the world of work better for disabled people, it needs to be better for everyone and there are bigger issues that sit outside of the remit of this Green Paper.

Take part in the Green Paper consultation which closes this Friday 17 February, and tell the Government what you think about the support disabled people get.

Why can’t the romantic hero be disabled?

Ellie Darkins is a romance author who has been published by Mills and Boon, Crimson Romance and Harlequin Books. Her latest book, ‘Holiday with the Mystery Italian’, features a disabled business tycoon as the romantic lead.

In this blog, Ellie talks about where the idea of including a disabled person came from, where she did her research and what she hopes the book will achieve.

With Valentine’s Day just around the corner, it’s my pleasure to bring a little romance to the Scope blog! I write romance-packed novels for Mills & Boon, and my latest hero, the gorgeous, glamorous, gold-medal-winning Mauro, also happens to use a wheelchair.

I didn’t set out to write a hero with a disability. The early ideas for this book all centred around the concept of a couple meeting on a dating show, and from there I started thinking about who might be tempted to give that sort of experience a go, and why.

I always envisioned my hero as someone who is up for any challenge and any adventure, and it was when I started digging into why he was like this, it became clear to me that he had had some sort of accident in the past that made him not want to miss out on anything in life. That’s when it occurred to me that he could still be living with the physical effects of that accident, as well as the emotional ones.

Ellie Darkins, a romance novelist, and her family stand in a line whilst smiling and all holding up Ellie's disabled brother who is laughing
Ellie and her family laugh whilst holding up Ellie’s brother

Doing something different

Once it became clear to me that my hero had a physical impairment, I had some big decisions to make. When I read some other romances with disabled characters, I found some beautiful, touching stories. But in most of them, the impairment was a key part of the character’s journey. I knew I wanted to do something different – to write a character whose disability isn’t part of the story. A good romance is packed with conflict, with plenty of barriers standing between the hero, the heroine and their “happy ever after” – but I saw no reason for Mauro’s wheelchair to be one of them.

They say “write what you know” and in this case, I’ve been able to draw from a real-life example of someone who lives with a disability without letting it define them. My brother has had chronic lung disease since birth, but (while I have no desire to know the details!) it has never been an issue in his dating life. What it does do, occasionally, is throw up practical issues, such as the time my family nearly missed a flight home from Italy while the airport security staff tried to decide whether they would allow his oxygen cylinder onto the flight. They decided they would, but took so long that everyone had to run to make it to the gate in time.

Making Mauro as real as possible

Researching the practicalities of Mauro’s disability was an important part of writing the book for me. While I didn’t want his wheelchair use to be a big part of the romance storyline, it was important to me to try and portray Mauro’s life in a way that reflected the experiences of his real-life counterparts. I was in the privileged position of being able to give Mauro a bank balance that helps overcome many challenges, but even his billionaire lifestyle can’t get rid of all obstacles or remove all ignorant people from his path.

I hope Mauro and Amber’s story has done justice to the everyday challenges of the many wheelchair users who have shared their stories on this blog and elsewhere, and to whom I owe a debt of gratitude.

With Scope’s own Twitter poll revealing that three out of four people would like to see more representations of disability in literature, I hope that you’ll welcome Mauro’s story, and be as open to falling in love with him as I was.

Ellie Darkins, a romance author, smiles at the camera

Scope have been looking into the lack of disability representation in literature during National Storytelling Week. We hope that many more publishers and authors, like Ellie, include better representation of disabled people in books.

Visit Ellie’s website to find out more.

On Saturday 11 February, we are also giving you the chance to win one of two copies of ‘Holiday with the Mystery Italian’, find out more on our Facebook page.

I’m throwing myself out of a plane for Scope!

Sophie’s brother Harry has cerebral palsy, and over the years her family have received advice and support from Scope. To say thanks, Sophie is taking on a exhilarating challenge. 

Hi! My name is Sophie Newton and I am almost a quarter of a century old. On 25 February 2017 I am throwing myself (probably ungracefully) out of a plane at 10,000ft to raise money for Scope.

Scope is a charity that is dear to the heart of my family, because of how they supported us when my brother Harry was small. Harry was born prematurely and suffered a starvation of oxygen to his brain. As a result he was diagnosed with cerebral palsy.

Before I organised the Skydive for Scope, I told my parents of my plans and asked them to tell me their memories of Scope. They both laughed as they told me how when Harry was about 4 or 5, Scope sent him for psychological and physical assessments to evaluate his impairment. During the stay, my parents and Harry were having a meal and Harry spasmed and the potato on his fork flew into the air and into someone’s cup of tea! When Harry and I were younger and my parents didn’t have much money, Scope took us on holiday in Bridlington – we had a great time.

Hair-raising fundraising

Harry is now 26 and uses a wheelchair due to his condition. He has limited movement in his legs and struggles with the everyday tasks which I take for granted. When Harry was young, my parents reached out for advice and support, which Scope provided with willingness and kindness. My parents have fond memories of Scope and the support they gave our family; from arranging psychological and physical assessments for Harry to taking us on a family holiday in Bridlington. Having a personal connection to Scope made it even more special, and what better way to raise money than by doing something hair raising!

Life has been, and is still quite tough for us, Harry and many other families with a disabled parent, child or sibling. Scope provided support and advice during dark days when Harry was young and offer support to countless others.

Fundraising for Scope is a fantastic way for me to show my gratitude and to raise more awareness of the work that Scope does for disabled people and their families.

An accepting and accessible society

Sophie smiling and cuddling a dogScope champion change so that one day we will live in a society that is accepting and accessible for disabled people. A society which views disabled people as individuals with unique characteristics.

I am excited for this opportunity to aid Scope is doing this and hope I can raise enough to show my gratitude and support of their amazing work.

You can sponsor Sophie’s Skydive on her Do It For Charity page.

Want to take on a hair-raising challenge like Sophie? Sign up to a skydive today.

Top 5 disability inclusive books – National Storytelling Week

Dan White is the author of the brilliant Department of Ability comic book, featuring a cast of superheroes whose impairments are their greatest superpower.

In this blog Dan runs down his list of the top five books that feature disability.

Disability in literary form is rare. I have searched, read and reviewed as many books as I could find that include it. Here is a list of my champion books. So, buckle up and, as my daughter Emily says to me as her wheelchair passes out of the house, “let’s roll!”

5. ‘Mr Millet’s farm’ by Catherine Lord

I had to include this. Catherine is the great undiscovered children’s author. So far wrongly ignored by mainstream publishers, Mr Millet’s farm is colourful and unique. Catherine writes with complete charm and understands both her subject and the little eyes who read it. It’s the story of Raj,  a wheelchair and the different animals that Front cover of Catherine Lord's book, Mr Millet's farm. It depicts a bear in a wheelchair on a farm.reside on the farm. The moral of the story is that it’s great to be unique and be who you are. The book aims to help raise awareness of disabilities from a young age.

Complete with wonderful, colourful illustrations, Mr Millet’s farm is perfect to read together with your children. It is an utterly beautiful book on acceptance and deserves a wider audience.

4. ‘Synthesis: Weave’ by Deane Saunders-Stowe

Disability Sci-fi? Yes! Science fiction is the most imaginative of all genres. To imagine a world that does not exist takes a special mind. And Front cover for Deane Saunders-Stowe's book, Synthesis Weave. It depicts a wheelchair user climbing up the side of a cliffto integrate disability makes that mind even more incredible. It shows a world in the future where disability and wheelchairs still have issues, but things have moved on. For instance, plasma limbs (spoiler alert), the uses of magic and the dangers of machine ethics give the book massive depth and the fact it has a wheelchair user climbing a mountain on the front cover sold it to me almost instantly!

3. ‘The Christmasaurus’ by Tom Fletcher

Well, I was sold on this because of the Christmas aspect! But the gem of this book is the fact that the main character uses a wheelchair. However, his disability is only broached almost a quarter of the way through and then it is dealt with swiftly and to the point.  Scope gave me this book to review and I consumed it all the way home from London. It was generally laugh out loud funny, the main character William is hilarious and a character in his own Front cover of Tom Fletcher's book, The Christmasaurus. It depicts a young boy riding on the back of a dinosaur surrounded by snowflakes.right.  You feel relaxed around his story and therefore laugh at his wheelchair accidents. You also get a darn good Christmas story to boot, with a dinosaur!

Tom has a talent for writing for kids that also sucks in the adult reader. Never have I felt more comfortable laughing out loud on the packed 5.30 from Waterloo. Diversity? Inclusion? Laughs? Nailed it.

2. ‘The Art of Disability’ by David Proud

David is a good friend of mine and an author to boot, however, that relationship has no bearing on his book being included here. Essentially a guide book for media types, The Art of Disability is a painstakingly sourced and written piece on the power of representation, it’s importance and how inclusion can be achieved in the wider media world. David, a wheelchair user, knows his stuff. His inveFront cover of David Proud's book, The Art of Disability. It shows a wheelchair user on a stage in darkness.stigations into the industry, his tips and his knowledge are evident.

Each chapter is easily digestible and informative for disabled people wanting to break into the industry. David is passionate and his experience, talent and knowledge ooze from the book. Full of quotes and humour this is essential for any disabled talent or any uninformed media executive.

1. ‘The Spiral Cage’ by Al Davison

Easily the winner, a graphic novel of such diverse beauty and power. I have re-read it constantly and it has had a huge impact on my work. Al the author gives you his life of being born with Spina Bifida from birth to present day in a series of incredible, stark, beautiful black and white images. The variant styles and text absorb you totally. Imagery is paramount and here Al uses many styles to illustrate his life from an era where being born differently meant different attitudes.

We see his formative years, his doctors, bullies, love and dreams being played in powerful, dedicated art. It is unashamedly rFront cover of Al Davison's book, The Spiral Cage. It depicts an abstract pattern with the close up of a face.aw both in language and style, but it is essential to read.  Sadly, out of print, but with a sequel in the works and a reprint hopeful, Al’s book needs to have a resurgence, especially today when it is more relevant than ever. The Spiral Cage is unlike any book on disability and that is what stands it out from anything else. It is so unique that people who buy comics for entertainment need to purchase this, as it will tell them something about life.

We ran a Twitter poll which showed that 3 in 4 people want to see more inclusion of disability in literature

So, for National Storytelling Week, we’re working on this. We’ll be asking for better representation of disability in literature, as well as celebrating some great work that we want to see more of.

To find out more about stories at Scope, head to our Stories Hub and please get involved with our activities for National Storytelling Week.

For National Storytelling Week – help us champion books that feature disability

Here at Scope, stories are central to everything we do. For National Storytelling Week we’re taking the opportunity to celebrate authentic stories and calling on publishers and authors to improve the representation of disability in literature. Read on to find out about all our activities so far and what we plan to do next.

Why tell stories?

Great stories have the power to connect us, to raise awareness, to make people feel and act. They’re at the heart of everything we do at Scope and they have a huge role to play in achieving social change. Few people are moved by statistics or facts, but when you hear someone’s personal story it can have a powerful impact.

Stories tell us things we didn’t know before; they show us other ways of living, other experiences, other views on the world. They can also make us feel less alone by showing us people like us and stories like ours – happy ending or not.

Telling authentic stories

At Scope, every story is told by the storyteller themselves – we’re just the ‘caretakers’, if you like. Although we interview people about their experiences, the stories we share are always in first person and completely in the storyteller’s own words. And they always have the final say – we never interview and run! We hope this builds trust and shows just how much we value them.

We work with storytellers to share their stories in lots of different ways. This could be anything from a policy report – using real experiences to bring our influencing to life, at events, in fundraising materials, in films and, very often, on Scope’s blog.

We’re really proud of the way we tell stories at Scope. Putting storytellers in charge means we only ever tell authentic stories. We give people a platform to share their diverse experiences and show a more accurate picture of disability. Often, opportunities for people to share their stories are lacking – disability isn’t a huge focus in the media and when it is, it’s often the negative side that you see. We want to make sure that people can tell the story that they want to tell.

Which brings us on to National Storytelling Week.

Dan, an author holding up his comic book, poses with his daughter Emily who uses a wheelchair
Dan and Emily White – creators of Department of Ability

People want to see better representation of disability in literature

In the stories team we’re privileged to hear about a range of experiences in our day to day work. Unfortunately, for most people, their chance to read stories about disability are limited. If you think back to the books you enjoyed as a child, or even as an adult, you’d be hard pushed to find many featuring a disabled person. As a result, lots of people either don’t know much about disability or they only know the limited (sometimes misleading) view that they’re presented with.

This contributes to poor attitudes and stereotypes which can affect disabled people’s lives in number of ways. Another downside is that disabled people don’t get to read about stories and characters they can relate to.

We ran a Twitter poll which showed that 3 in 4 people want to see more inclusion of disability in literature

So, for National Storytelling Week, we ran lots of activities to campaign for better representation of disability in literature, and celebrated some great work that we want to see more of. 

We ran a comic book workshop with Dan White, creator of Department of Ability. Dan was inspired to create the comic book when his 11-year-old daughter Emily wondered why there were no wheelchair users like her on TV. Dan then set out to create a comic book where Emily would lead a group of superheroes whose impairments, far from holding them back, are actually their superpowers. To watch a film about the comic book workshop, head to our YouTube channel.

Following the workshop, we posted each superhero creation on Facebook and ran  a competition – with the winner getting to see their superhero turned into a guest in the next Department of Ability comic book. Here’s a short film of the winner, Daisy, explaining her superhero design.

We also partnered with the Huffington Post to share a blog each day from different storytellers. Incase you missed some of the content you can catch up here:

“Books Hold A Special Place In My Heart – I Just Wish They’d Have A Place For Me” – Heather’s blog

“The World Needs More Disabled Superheroes” – Dan and Emily’s vlog

“I Don’t Want To Read Books That Treat Disability As A Tragedy” – Anne’s blog

“It’s Immensely Important For Disabled People To See Positive Portrayals Of Themselves In Literature” – Asim’s blog

“Hey JK, Why Wasn’t Harry Potter Disabled?” – Phil’s blog

Following that, we partnered with Books on the Underground to do a ‘book drop’ where we hid 30 copies of Quentin Blake’s ‘The Five of Us’ around accessible tube stations. We had lots of engagement on our social media channels and our campaign was featured on Books on the Underground and on Quentin Blake’s website which was an amazing way to share our message with new audiences.

Our next step is to reach out to publishers and authors to ask them to improve their representation of disability in future books. We will keep you updated once we hear more. – so stay tuned!

To find out more about stories at Scope, head to our Stories Hub and please get involved.

Scope exists to make this country a place where disabled people have the same opportunities as everyone else. Until then, we'll be here.

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