Category Archives: Real life stories

I’m just like any other mum – disability doesn’t change anything!

Marie and her husband Dan are the proud parents of Mark, who’s three years old. Marie has brittle bone disease and uses a wheelchair, so aspects of being a mum can be challenging. To mark Mother’s Day, Marie updates us on their past year –  Mark has been coming on in leaps and bounds, and there have been changes for Marie and Dan too.

Mark has my independent streak

Mark has stopped being a toddler and is most definitely now a fantastic, handsome and intelligent little boy. He has absorbed my fierce independent streak and most household tasks now echo with ‘No, Marky do it!’ in his own special little voice. His increased independence makes life easier physically – all the jobs I couldn’t do like picking him up are now in the past – but we have new challenges, how DO you discipline your toddler when he’s your own height? It’s a good job I can still shout and hold the purse strings!

One of his favourite things (at the moment!) is cooking, and this is where our fantastic adapted kitchen comes in; it means I can cook for the whole family and Mark can get involved too. He loves making gingerbread men! We designed the kitchen ourselves with a number of clever adaptations using standard materials to make it as cheap as possible – things like using wall units as low-level cupboards to give my chair room to fit underneath. It’s amazing how a few simple bits of lateral thinking make all the difference!

While the more sedate things are mummy jobs, the active things are daddy’s domain. Mark recently started swimming, something that he can do with Dan while I watch. I can swim (I’ve been known to flap about and propel myself up to 800 metres, although I won’t break any records!) but the idea of going in a bustling, busy public pool with Brittle Bones doesn’t sound too smart. I leave that one to the boys.

Marie and her 3 year old son Mark sat at table

Returning to work

And Mark definitely is a boy now, we registered him in our local preschool for 3 mornings a week starting back in January – the start of his funded time. He adores it! Whilst we’ve always had him out and about doing things (Start the Art, Mini Strikers, Rugby Tots to name but a few) since he was about 6 months old, he really has responded well to the structure of preschool. The loving and nurturing home we have created for him has worked, he’s ahead of his age targets across the board.

Mark now being at preschool has left a hole in my life, and I’m never one to sit still doing nothing. I’d get bored too fast. So, I decided to use my degree (First-class BSc in a number of subjects including Social Policy and Child Development) and my long experience in the health and social care field as both a recipient and worker to get a job where I can really make a difference. Such an opportunity arose and I’m proud to say I am now a college tutor, tutoring a wide range of courses. It’s brilliant! I get to bring a unique view to the table, helping students (e.g. care practitioners) see the wider issues at play beyond just learning the course. I hope they are learning a lot! Mark can also see me earning (as he puts it) ‘pennies for rides!’. I guess that returning to work as your child gets older is just another one of them milestones and I see myself as just like any other mum despite the 200+ broken bones, life-saving surgery as a teenager, the fact that I’m fully wheelchair dependent and have daily chronic aches and pains from years of physical trauma.

Dan has a new job too. Sadly he was made redundant following a very successful career in space research – he was one of the team who landed a spacecraft on a comet in late 2014. Google ‘Dan Andrews Rosetta’ if you want to read more! Sadly the end of the mission meant an end to the funding, and he lost his job. That was, naturally, a worrying time for us all. Not only was he job-hunting – he needed a company within a short commute distance to tie in with family, with normal office hours and that would recognise his transferable skills. He struck gold and is now working in the fascinating field of special missions aviation. Mark should have fun telling his school friends about what Daddy’s done for a living!

Marie holding a tray of gingerbread men while Mark sprinkles on flour

Remembering my own mum

So that’s it from us. A year of changes for us all and a lot of adventures! We like to think we’re giving Mark the best upbringing we possibly can. He’s always doing things and he most definitely doesn’t see me as anything other than ‘Mum’! It is still hard doing this without my own mum, there are countless times when I want to just call her and ask ‘What do I do if he…?’ or to share the latest milestone met. Readers who read my last blog will know that she passed away very suddenly in 2012 and this will be another emotional Mother’s Day for me. As well as all my other health conditions I am now also battling prolonged grief disorder but I am using my strength to ensure I am making each day count and living life to the full with my lovely little family. All I can say is that my upbringing from her definitely stuck, I wouldn’t be the fiercely independent working mum and wife that I am today without her teaching me that my disability needn’t stop anything!

Find out more about Marie and her family – read her previous blogs. If you have a story you’d like to share, get in touch with the stories team.

It took me 32 years to get a diagnosis. Why is autism in girls still overlooked?

Carly is an Autism advocate, filmmaker and speaker. She wasn’t diagnosed with autism until she was 32, after two of her daughters were diagnosed. She found it a battle to get a diagnosis and started to notice a lack of understanding and resources when it came to autism and girls.

For International Women’s Day, she shares her journey and talks about why we need to start recognising and supporting autistic women and girls. 

Growing up feeling different

My earliest memory is being the kid that couldn’t go to preschool without my mum staying. My mum actually got a job at the preschool so I would go! I remember it seeming very noisy and busy. All the kids were playing but I wasn’t. Then when I started school that didn’t change. I remember feeling very different then and things got even harder in secondary school. I was really anxious. I started realising that I never got invited to birthday parties. I couldn’t cope with bright lights and they actually made my quite hyper. My teachers just thought I was naughty.

My parents took me to see a psychologist at 14. He said I was just lazy and his advice to my parents – which is the worst advice you give an autistic person – was she needs everything new, she needs a fresh start. So we moved house and I started a new school but life just took a downward spiral for the worst. I got into all sorts of trouble, bad boyfriends. Obviously I had no understanding of how vulnerable and naive I was, no idea of the consequences of my actions at all. I ended up pregnant at 15 and living in a homeless hostel. I had my daughter who’s wonderful and I worked hard to turn things around, but there are serious consequences to not being diagnosed and not being supported.

carly-jones-blog-3-resized
Carly at the UN, where she spoke about autism and girls

“You can’t be on the autistic spectrum because autistic people can’t act”

I have three daughters and two of them are autistic as well, which is how I found out that I was. My 14-year-old was diagnosed when she was six and my youngest was diagnosed when she was just two. In the process of trying to find out anything I could about autism and girls for them, I realised “oh this explains everything!”

I went to see an NHS psychologist who gave me a tick sheet with things like “Do you prefer parties or museums?” – you know, one of those. I scored quite highly on it but then he asked “What are your hobbies?” and I said “I love acting” and he said “Oh then you can’t be on the autistic spectrum because autistic people can’t act”.

I left it for a while, then I wrote to the lady who discovered Asperger’s. I wanted to film it so that no-one else would have to go through this alone. Because I felt so alone. She invited me to meet her and I finally got my diagnosis – on film! There was a mixture of emotions but overall it was complete elation. I had my answers and I could start rebuilding my life, understanding who I am. I always felt like a second class ‘normal’ person and now I know that I’m a top class autistic, so I’m fine!

Why is autism in girls overlooked?

I was told in 2008 by educational staff that it was impossible that I could have two autistic daughters because autism only happens to boys. Every book I picked up to try to understand and support my daughters all referred to “he” or “my son”. There was nothing for girls. I just thought why?

I think gender stereotypes are a big problem. Not only are there lots of women who are undiagnosed and unsupported, there are lots of men who present themselves in a more feminine way and they’re not diagnosed and supported either because they’re not the stereotypical view of what autism is – they’re not “train spotters” or like “Rain Man”. Also, female pain and female differences aren’t always taken as seriously. It’s always “Oh they’re probably hormonal”. Even my reaction to the sensory overload was seen as “Oh she’s in a bad mood” – and being autistic, I couldn’t explain my discomfort to them.

Then there’s what I call the ‘chameleon effect’ – masking your differences and trying to blend in. We do this just to survive in a scary, unpredictable world. Things are changing but there are still pockets in the UK where this is happening and girls aren’t being believed and supported.

Head and shoulders shot of carly in front of a brick wall

I want to make sure the girls in our country are protected and supported

Globally there needs to be more recognition of autism and girls. In the UK it’s a really exciting time because I’m looking around and seeing so much more awareness. People finally believe we exist – yippee! That’s my first eight years done. Now my next eight years will be about making sure we have equality; making sure we have the same protection and opportunities as everyone else.

Some things that happened in my life were awful but in hindsight I’m grateful now because I know how important it is to make sure that the girls in our country are protected and given proper support. I spent 32 years of my life thinking I must be “stupid”, “crazy” or “unliked”. Being diagnosed gives you an understanding that this is how you see things and this is how other people see things differently to you. It gives you self-awareness. I’ve got a lot more confidence now. The hardest thing is knowing who you are after years of it being eroded away. I’m still discovering myself now but it’s quite exciting. I’m getting there!

Find out more about Carly’s story on her website. You can also buy Carly’s book about autism and girls.

If you have a story you would like to share, get in touch with the stories team.

Why is it so hard to find books with a disabled character?

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

For World Book Day, Dan tells us how he was inspired to create the comic book and why there needs to be more disabled characters in literature.

My book-devouring, art loving daughter, Emily, had stopped anticipating reading about disabled characters in her comics or literature.  For her, that day would never appear. Or would it?

It was the disparaging look I saw on her face when she first learnt to read that set me on a course of action.  Art, writing and comics are my second love, and that drove me to create the group of disabled superheroes that is The Department of Ability – a graphic novel with a difference, launching later this year!

Disability isn’t the main focus – they’re battling to save the world

I wanted to draw disability in a way that was not really about the disability. Yes, the five characters in he Department of Ability show physical differences, but there’s no backstory, no preface on disability and how it affects this motley crew, you just get 5 different SUPERHEROES battling to save the world in a final war between good and evil.

The Department of Ability are colourful, strong and fun! A ghost? Alien? A Dog? A Cheetah? Emily? How’s that for diverse!?

Several of the characters designed for Department of Ability comic strip
The characters from The Department of Ability comic strip

The Department of Ability has captured hearts worldwide even before the first volume is published. But it’s not just disabled hearts, it’s hearts from everywhere. From the warmth of Matthew Wright, to the voice of The Today Show USA, to the desk of comic genius Stan Lee, the belief and enthusiasm of established comic writer Leah Moore (daughter of Alan) and the tireless work of Scope, all who have seen and loved my creations see a future of change.

There’s a growing desire worldwide to see more diversity and essential inclusion. It’s a strong a message to those in charge of what we read and watch, telling them, “we love difference, and want to see more of it. We all have a right to be heard”.

Inclusion is vital, especially for children

Currently, this world seems to be run by people terrified of accepting disability into the media they enjoy but inclusion is vital, especially for children. They need and want to see images that reflect themselves, otherwise we’re going to have another generation growing up being seen solely as needy and marginalised.  Who wants that?

I read and review many books on disability but they are incredibly rare and it makes you wonder how much more could be achieved if the industry threw caution to the wind and realised the good they could attain by giving us everyday, non-static, non-stereotypical characters.

Inclusion means include, and that means all. It will dispel myths, preconceptions, and will inspire the reader to discuss disability in a whole new light, barriers will fall and disability will not be seen as the last to the party.

A young girl holding up her drawing of her superhero, a mermaid with a wheelchair

I hope The Department of Ability will kick open a door for more diverse stories

All the talents that blossom and bubble in this amazing community will finally be able to show itself to the wider world, it just needs a thinker outside the box to see there is no barrier, and to see the power and might of the untapped purple pound, all £249 disposable billions of it.

2017 is the year of Department of Ability BOOK One, and it will hopefully kick open a door for an army of stories, pictures and talent to emerge.  The authors are there, the future is there, let it in. The Department of Ability are loud, brash, dysfunctional, passionate and determined, a bit like everyone else on earth really.

For National Storytelling Week, we asked for better representation of disability in literature. Read about the activities we’ve done so far and please help us spread the message.

Visit the Department of Ability website to read the comic strips and keep up-to-date with the launch.

Dear Mum and Dad of a newly undiagnosed child

Around 6,000 children are born in the UK each year with a genetic condition that can’t be diagnosed because it is so rare. These are called syndromes without a name. A proud mum who is a member of the Swan UK community has written an open letter to other parents of undiagnosed children.

Dear Mum and Dad of a newly undiagnosed child,

This Rare Diseases Day, I want to tell you that you are not alone. We are here, in our thousands, living amongst the mostly unaware. You are now a part of the undiagnosed community. I am guessing that you feel lost, bewildered and don’t know where to turn. We too have been through the shock and disbelief. You now have a child known as a Swan – Syndromes Without a Name.

No-one knows what the future will hold.

I will never forget being told that 9 out of 10 children presenting my child’s array of challenges remain undiagnosed. It was confusing and incredible that in the world of modern medicine, undiagnosed was even a thing. I was in denial, googling frantically, unable to accept there was no answer. Yet, we are still here six years later. The living proof. I can honestly say that we have never reached the point of acceptance, we search hard for that elusive diagnosis.

Please believe me, our life is lots of fun. Every down turns into an up. Our child is an inspiration who continually reminds us what is truly important in life. It will become easier to live with, I promise.

There are many positives.

Without a label, no-one will set a limit for your child. They are free to reach any milestone without hindrance. No-one knows what the future will hold. Hold tight to the hope and don’t let anyone take it away. Many of us have experienced the joy of our child exceeding medical and developmental milestones and, believe me, it feels like magic.

Your child is unique. This will create an incredible bond between you, no-one will know your child like you do. Medical professionals will turn to you for an insight into your bundle of joy. Any siblings will be equally special and treasured in a way you can only describe. The love of a Swan unifies a family.

It won’t always be easy.

I should, however, warn you that you will plummet into the world of genetics. It will baffle you, it still does me. One tip, unless you are a scientist, don’t buy ‘Genetics for Dummies’ – I couldn’t get past the first few pages. Progress in genetics is nothing short of fascinating. There is a good chance in your lifetime that the ultra rare disease your child has will be identified. When that moment arrives, your reaction will be mixed – excitement, relief, not being sure if you want to know. The possibilities for future treatment and therapies and the opportunity to meet others with the same condition will hopefully follow.

I can guarantee that you will be welcomed with open arms into the Swan UK community. It’s a generous and caring group. We cry as one and laugh together – there is always someone who has had a similar experience. It’s a virtual listening ear sprinkled with a few regional get-togethers to meet up in person.

It won’t always be easy. There will be tough times ahead. It will take time to come to terms with the absence of answers but make sure you take time to enjoy your child. Focus on the positives and always remember, you are not alone. We are here in our thousands supporting each other.

Best wishes,

A proud mum

Visit SWAN UK’s website to find out more about the work they do.

You might not think it, but up to 30 million people may be affected by one of over 6000 rare diseases. Carole Villiers’ son Dexter is one of them. Read Carole’s blog where she shares the story of Dexter’s Angelman Syndrome diagnosis and how it changed her family’s life. 

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.

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

Through the Eyes of Me will be published by Graffeg in August.

Pre-order the paperback and add ‘Scope’ as coupon code to get a 20% discount on the normal price of £6.99.

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

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.

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.