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.

Nothing will change until disabled people are included in identifying the barriers they face getting into work

Jane Hatton runs Evenbreak, an award-winning not-for-profit job board run by and for disabled people. It helps inclusive employers who understand the benefits of employing disabled people to access that talent pool. In this guest post, Jane explains some of her concerns about the government’s plans for “Improving Lives” with its latest consultation on disabled people and employment

The Evenbreak logoJane runs Evenbreak lying flat, as her spinal condition makes sitting difficult.

As a disabled woman running an inclusive not-for-profit job board for disabled candidates, I welcome any initiative which reduces disabling barriers in the workplace. The new green paper, “Improving Lives”, should therefore warm the cockles of my heart.

However, I have some grave doubts about some of its suggestions.

Reducing the disability employment gap

The government’s laudable aim is to halve the gap between the number of non-disabled people who are employed (80 per cent) and the number of disabled people who are employed (48 per cent).

However, if we continue with current approaches, reducing the gap from 32 per cent to 16 per cent will take nearly 50 years. Drastic action is required.

The government are right that they need to take action to reduce the disability employment gap. I’m not keen on putting a figure on it, because I believe disabled people should have exactly the same opportunity to be given a job they are capable of doing as a non-disabled person, not just a less-worse chance. There is plenty they could do.

Appropriate work

The green paper talks nauseatingly often about the evidence that shows “appropriate work is good for our health”. As a general principle, whilst remembering that a significant number of people are unable to work or for whom working would be damaging to their health, I can mostly go along with this.

However, the crucial word here is “appropriate”. For many people, their working conditions have contributed to their impairments (e.g. nurses, paramedics and labourers with back injuries, or people working in stressful conditions with mental health issues). My concern is that “appropriate work” will be misinterpreted as “any work being good for everyone”.

The challenge that our candidates face is finding employment which is appropriate for them, with employers who are prepared to be flexible in both their recruitment processes and working patterns.

What changes should the government make?

Any measures to help disabled people into work should only apply to those who are really able to work (as opposed to many of those that Work Capability Assessments have deemed fit for work who clearly aren’t).

Some of our candidates struggle to find the bus fare to attend interviews. Social security needs to reflect the fact that people who are worrying about bedroom tax, benefit caps, sanctions, social care, food banks and homelessness are not in a good position to be looking for jobs.

People who rely on Motability to travel around should be assured of that facility. Someone who is unable to use public transport is unlikely to be able to look for or travel to and from work without a suitable alternative.

Leading by example

The government itself is a huge employer. It should be leading the way in inclusive employment and removing barriers in the workplace. However, in my experience, it is the private sector who are much more willing to, for example, use our specialist disability job board. Very few public sector organisations have used Evenbreak.

The answer to this complex issue is relatively straightforward. If the public sector – all government departments, all NHS trusts and local authorities – were to remove disabling barriers in their organisations and encourage all their supply chains to do the same, there would be a rapid change in workplace culture.

Investing in support

Support to help disabled people into work is already happening successfully in many DPULOs (disabled people’s user-led organisations) up and down the country. Resources could be distributed to increase this valuable provision more widely.

Including disabled people

Most of the problems occur through non-disabled people making and implementing decisions based on what they think disabled people want and need. Nothing much will change until disabled people are included in identifying the barriers and in making decisions about removing them. Until then, “Improving Lives” is unlikely to apply to disabled people.

Would you like to respond to the Government’s plans?

Anyone can give feedback to the Improving Lives Green Paper.

The paper is available in a range of accessible formats, and people can respond online or by post by Friday 17 February.

If you’d like to let the government know what you think about being disabled and finding work read our blog on how to respond to the consultation.

I was told I may never walk again – now I’m going to run a Half Marathon!

Erika was told eight years ago she may never walk again. She talks about the barriers, attitudes and challenges she has had to overcome from day to day. Now she faces her biggest challenge yet – running a half marathon.

I have Ehlers-Danlos Syndrome (EDS) and a form of Dysautonomia called Postural Orthostatic Tachychardia Syndrome (PoTS). My autonomic nervous system does not work leaving my body unable to control basic functions such as heart rate, digestion and blood pressure. My connective tissue is also faulty; it is weak and stretchy causing daily dislocations and pain and exhaustion just to name a few. When I was 12 I was diagnosed with Complex Regional Pain Syndrome (CRPS), due to this I lost the use of both my arms and legs, I was told I would never walk again.

Social pressures and attitudes

Love it or hate it social perceptions surround us everywhere we go, overflowing our brains like a virus on an unsuspecting computer. Without realising, judgements are made on a person’s abilities and circumstances without real knowledge. Embarrassment, awkwardness, isolation; formed from age old perceptions and misunderstanding, feeding down through generations, effecting perceptions today. You ask why and you’re told “It’s just the way it is”.

The frustration runs through our veins like the harshest river, everyday willing the banks to burst, for reality to prevail and everyone to see we are human too. Constantly having to prove ourselves twice over, opening up our souls to strangers in a futile attempt to prove we are more than a malfunctioning body, more than a pity case, more than our disability.

What do you think of when you hear the word disability?

When you hear that word, what first comes to mind?

“I feel sorry for you.”
“You’re so brave.”
“I’m so lucky I’m not like you.”
“What kind of life is it to be like that every day.”
“You’re not living, you’re surviving.”
“I hope my children are not like you.”

For many it is these six heartbreaking quotes. For too many people, a person with a disability is seen as someone who is surviving, not living. A person saddened and ruined by their circumstances.

However to me, my disability made me the person I am today.

The person who gives everyone a chance, no matter what their past.
The person who works tirelessly every day to achieve my goals.
The person who knows the sky is the limit.
The person who is a dancer.
The person who is understanding.
The person who is training for a half marathon.

It is now 8 years after being told I may never walk again and I am currently training for a half marathon which I will be completing in aid of Scope.

Feet of disabled woman training

A half marathon for me will be an extremely physically and mentally tough journey. I don’t mean it’ll just be a little tiring, I mean one of the toughest things I will ever do!

So, why do it then?

Good question!

I have grown up in a society where disability and illness are a taboo. A vast majority of people assume that illness and/or disability mean you can no longer live a fulfilling life and that you definitely can’t do sport. This made life growing up with a disability hard for me, and even more so when I fell very ill two years ago. I felt consumed by hopelessness, overcome by the unknown, realising the things I would never do. Social perception cemented this belief in my mind, pushing me every day to give up. Telling me it was “just the way it is”.

The thing about disability is it makes us powerful. It provides knowledge of issues much wider than our own. Opens our mind to what life really is and that it is up to us to form our own future. If we are able to overcome what society dictates we should and should not be able to do then we can do absolutely anything.

So I am determined to do this half marathon! Training will be hard for me, I know that. I also know that there will be times that my health will go downhill, I will be scared, upset, angry and want to give up. There will be days when I will think it is impossible.

But I will remember the power I have. And I will remember the little girl with Downs Syndrome I used to teach dance to and the many other disabled children out there with so much passion, enthusiasm and raw talent. And I will do it for them. I will aim to change social perception so that they can grow up with less of a fight, knowing that just because you may be disabled or chronically ill it doesn’t mean you can’t do something, just that you may have to do it in a different way.

Feelling motivatedby Erika’s story? Take a look at some of our challenge events today

Mental health – “It’s a conversation for everyone”

Abbi was born with a genetic bone disease called osteogenesis imperfecta, also known as ‘OI’ or brittle bones. She also has mental health conditions.

In this blog, she responds to the speech the Prime Minister made at the annual Charity Commission yesterday. The Prime Minister made an announcement of additional support for those in the workplace with mental health issues.

On my ninth birthday, I was given a fluffy, purple, ‘Groovy Chic’ journal. It was one of those lockable ones which came with a set of tiny keys and quickly became one of my most prized possessions. Inside, I kept all my innermost thoughts – lists of my favourite Beanie Babies, ways in which I could become more like my idol, Jacqueline Wilson.

And regular updates on how much I wanted to die.

We need to feel able to talk about mental illness

In her speech at the annual Charity Commission yesterday, Theresa May noted that 50% of adults with mental health problems began to develop their illnesses before the age of 14. If that seems scary, it is. In fact, by the time I was 14, the only thing I detailed in my diary was my food intake and the number of sit-ups I’d done that day. Yet it would be seven more years before I finally received an intensive course of cognitive behavioural therapy (CBT) to treat my anorexia.

Since the days of my fluffy, purple diary, my mental illnesses have cost the government untold amounts of money in hospital admissions, medications and police call-outs. They have had a tangible effect on my performance at school and university and they continue to cause trouble in both my personal and professional life.

As Mrs May identified yesterday, early intervention is both critical to the recovery of those with mental illness, and of great long-term benefit to the economy. If we want to increase the recognition and treatment of mental illness in children and teenagers, then we urgently need to feel able to talk about mental illness ourselves.

Abbi, a young disabled woman, smiles and sits in her wheelchair behind a table

Mental illness isn’t palatable, but it’s a fact of life

When we talk about talking about mental health, we often make a comparison with how we talk about physical health. Whilst that’s not entirely helpful – our societal and medical treatments of physical illness still have a long way to go – it’s nevertheless often easier to discuss most physical illnesses than it is to discuss most mental ones. I’m happy to publicly disclose that I have both, yet even I regularly blame psychological symptoms on my physical conditions. After all, ‘my arthritis has flared up’ sounds a lot more palatable an excuse than, ‘I’m afraid that if I leave the house, the voices in my head will make me throw myself in front of a bus.’

Mental illness isn’t palatable. It’s rarely an easy fix. But it is a fact of life, and when we make it difficult for people to talk about – when we make employees feel uncomfortable disclosing mental illnesses, or brush off symptoms of self-harm as ‘teenage angst’, or refuse to believe that children might be capable of suicide – then we allow those illnesses to flourish.

Closing her lecture yesterday, Mrs May made an important point – ‘Mental health problems are everyone’s problem.’ Mental illness isn’t just a conversation for doctors’ offices and psychiatric hospitals. It’s a conversation for classrooms, and car rides, and water coolers. It’s a conversation for teachers and parents and friends. It’s a conversation for everyone. Join in.

Read Scope’s response to the Prime Minister’s mental health pledge.

For free information and support about disability, please contact Scope’s helpline at helpline@scope.org.uk.

You can also join Scope’s Online Community where you can share experiences, get disability advice and discuss the disability issues that matter to you.

Our priorities – influencing government in 2017

It already seems that Brexit is set to be the biggest political story of 2017 with the Government expected to trigger Article 50, beginning the formal process of the UK leaving the European Union, by the end of March. We think it is really important that disabled people’s voices are heard as part of this process and vital that progress towards equality made in recent years is not lost.

There will also be plenty of other important moments throughout the year and we will be working hard, with you, to make sure issues which affect disabled people’s lives stay high on the political agenda.

Social Care

Social care was hitting the headlines at the end of 2016, with warnings from the Local Government Association and Care Quality Commission that the system is in crisis. With the Government accepting a long-term solution to care funding needs to be found, social care is likely to remain high on the political agenda in 2017. Some additional funding will enter the system this year through an increase in council tax and from the Better Care Fund, but with a funding gap of £4.6 billion, this won’t provide the long term solution needed to meet rising demand and costs.

Social care is the support disabled people rely on to get up, get dressed, get out, and lead independent lives. Without that support disabled people can become isolated, can’t contribute to society and risk slipping into crisis. That’s why we are campaigning for long-term and adequate funding for care. Over 400,000 working age disabled people rely on social care, and with much of the recent focus on how care affects older people, we will be continuing to raise awareness with decision makers of disabled people as users of social care. 55 per cent of disabled care users tell us the system never supports their independence, so we are campaigning for a care system which supports disabled people to live independently and have choice and control over their care.

Employment

In February the Government’s consultation on disability, health and work will close. We want to see the Government take the opportunity to bring about real reform of the support disabled people receive both in and out of work.

The Government announced in October last year that people with severe conditions will receive continued Employment Support Allowance without needing repeated Work Capability Assessments. This is a welcome change but we want to see the Government go further in 2017 and completely overhaul the Work Capability Assessment so that it identifies the full range of barriers disabled people face to work.

We believe disabled people must be protected from any additional conditions linked to the support they receive. We would campaign against any attempts to impose requirements on disabled people receiving support.

The Government want to hear from disabled people about their experiences of employment support services and at work. Read more about how you can submit evidence to the consultation. Later in the year we are expecting the Government to publish a more detailed plan about how they intend to reform support for disabled people following the consultation, and at Scope we will be pushing for swift action.

Employers also have a key role to play in halving the disability employment gap. 85 per cent of disabled people think employer attitudes haven’t improved over the last four years and more needs to be done to encourage employers to create flexible modern practices. The Government should set out a long-term vision for Disability Confident this year and develop a campaign promoting the business benefits of disability employment.

Despite significant pressure on the Government from MPs from all political parties, the reduction in financial support for new claimants in the Work Related Activity Group of Employment Support Allowance is going ahead in April 2017. We will continue to raise concerns about the harmful impact this will have on disabled people and call on the Government to reserve this decision.

Extra costs

Following the publication of the Extra Costs Commission Progress Review in late 2016, we’ll be continuing to campaign to drive down the extra costs disabled people face and working with businesses in a range of sectors to look at ways they can provide a better service for their disabled customers.

In 2017 we expect government to announce a consultation on consumer and market policy. We’ll be continuing to campaign for markets to work better for disabled people, and for a cross-governmental approach to tackle the range of costs faced by disabled people.

We are also expecting the Government to publish their second independent review into Personal Independence Payments (PIP) which will include recommendations for reform, particularly around the assessment process. We want to see the assessment for PIP more accurately capture the range of extra costs disabled people face from higher energy bills to the need for specialised equipment. Given that disabled people spend an average of £550 a month on disability related costs it is vital that the value of PIP is protected.

In 2017 we want to see long-term funding for social care so that all disabled people who need support can get it, reforms announced that will support more disabled people in employment and to halve the disability employment gap and the protection of financial support for disabled people. We will be working closely with disabled people to continue to raise these issues with the Government.