Category Archives: Real life stories

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.

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

“This child is spastic. Take her home.” – Disability History Month

Dr Lin Berwick MBE, counsellor, lecturer, journalist, broadcaster, homeopath, Methodist preacher is 66. She is one of a number of older disabled people who contributed to the Disability Voices website at the British Library Sound Archive as part of Scope’s Speaking for Ourselves project.

For Disability History Month, Lin remembers how a doctor labelled her as ‘spastic’ and encouraged her parents to have another child. 

“This child is spastic. Take her home…”

When I went blind

Lin went to a school for physically disabled pupils. When she lost her sight, she was bullied.

“When I went blind, the kids at the school were really nasty and I went through some horrible jeering and bullying, and people laughing at me because I walked into things. You know, I went to walk through a door that had glass panels and, because I could see the light through I thought the door was open, and of course it wasn’t. I sort of smashed my face, and then I walked into a brick wall and things like that, and hit my face again and I had tripod sticks poked into, and walking sticks poked into my face and handfuls of mud rubbed into my face, and kids saying ‘Can you see that, then, Berwick?’ It was horrendous at a time when you’re really frightened, because you’ve now suddenly got a new disability which you don’t know how to handle.”

‘Telephonist required’

Lin Berwick on phone
Lin Berwick on phone

Finding a job was another barrier Lin had to face. 

“When I got to the bank, it was one of these banks with these horrible revolving doors, which wasn’t easy, going through on a pair of tripods. Eventually, I found my way into the bank, and made my way to the accountant’s office, and when he opened the door he, said, ‘Oh, I know they told me you were disabled’, he said,’ ‘but I didn’t realise you were that disabled, but you might as well come in and sit down anyway’, and I thought, ‘God, this is a really good start to your first job interview!’ But I thought, ‘Well, I’m here. I’ve got one chance, so I might as well really go for it’, and he took my mother around the bank, showed her some of the obstacles, and we came back into the office and we started to talk about the work, and he proceeded to ask my mother every single question about my training.”

Becoming a Methodist preacher

God's Rich Pattern: Meditations for when our Faith is Shaken
God’s Rich Pattern: Meditations for when our Faith is Shaken

Even in her spiritual life, Lin faced prejudice when she tried to follow her vocation and become a Methodist preacher.

“The Secretary of the meeting said, ‘I think we’re going to have a problem with you.’ I said, ‘Oh yes! Why’s that?’ ‘Well, due to your disability, I don’t know how you’ll cope with the public speaking,’ so I said, ‘Well, as someone who’s done over 300 radio broadcasts, I don’t think you’re going to have a problem.’ ‘Oh,’ and he said, ‘And I don’t know how you’ll cope with the academic study.’ I said, ‘Well, I have ‘O’ levels, and I have the equivalent of a degree in Psychology.’ He said, ‘Oh, you can learn then!’ and I thought, ‘God, if this is the kind of prejudice I’m going to get, this is just amazing stuff,’ and I said, ‘Yes, I can learn’ and he said, ‘And then we don’t know how you’ll cope with the access to the church buildings,’ and I said, ‘There, I’m prepared to admit you have a problem, but maybe together, we can work at it.’”

Listen to Lin’s life story on the Disability Voices website.

Books by Lin Berwick

Find out more about the Lin Berwick Trust.

Read the rest of our blogs for Disability History Month

I wish my dad had been able to see changing attitudes towards disability

Recent words from RJ Mitte and Alex Brooker have had a huge impact on Andy Bundock, whose late father was disabled.

In this guest blog he praises them for how they’ve been speaking about disability, creating acceptance and understanding that he wishes had been there in his dad’s lifetime.

During the Channel 4 coverage of the Paralympics in Rio, Claire Balding had a number of guest presenters with her. One of her co-hosts managed to explain exactly what Cerebral Palsy was in about three sentences. He managed to sum it up in such an eloquent and easy to understand manner. It was only afterwards that I found out that his name was RJ Mitte (apologies, I never got in to Breaking Bad).

I noticed his slight speech slur, this man clearly had Cerebral Palsy. It was very similar to my late father’s. It completely took me by surprise and I burst in to tears. Quite an extreme reaction you might be thinking. Here’s why.

It saddens me that my dad never got to see this

My initial reaction was “Yes, finally. Someone explaining it! And, on the telly.” Perhaps people will start to understand. I wanted turn to my dad and say “Look dad” but he wasn’t there, it didn’t happen in his lifetime. This saddened me so much, to the point of tears.

Not only was someone taking the time to explain a disability, there were disabled people presenting prime time TV and being accepted for who they are. My dad never got to see this. There was also the added emotion of missing my father. Hearing RJ speak in a similar manner just tipped me over the edge.

I contacted Channel Four and asked them if that clip was available so that I could share it on social media. I really wanted to share it and have more people understand. Unfortunately it wasn’t. But then Alex Brooker’s emotional outburst on The Last Leg happened.

On an episode of The Last Leg, Alex Brooker’s emotional outburst to the audience and to us at home had so much impact. He totally smashed it out of the park. When he drew that emotional breath at the end of it and got a hug from Josh Widdicome my heart went out to him.

Thankfully, this clip was available and when I went to share it on social media, I was so glad to see that so many of my friends had already shared it.

Alex did so much to make people understand what it is to be a disabled person that night. Only with more understanding can we move on together and gain more acceptance of people’s abilities as well as their disabilities.

My parents faced discrimination and ridicule

I grew up in a time where there was little or no mainstream understanding of cerebral palsy – what it was, how it affected people. Both of my parents have / had mild forms of the condition and were on the receiving end of discrimination and ridicule.

They were ‘advised’ not to have children, and it was nothing to do with their ability to conceive. Those bits and pieces were all working just fine. Their ability to raise a child was brought in to question. They also were asked to leave restaurants as they ‘were upsetting other diners’.

But my father was a real fighter. He stuck two fingers up at the world and said ‘I’ll show you’ every single day of this life. He said, I can make one of those and mine will be better.

The lack of understanding affected me too

A lack of understanding breeds fear, particularly in kids of school age so I was a target. I got in to fights and subsequently detention simply for protecting myself and my parents from nasty name calling and ridicule.

This upset me even more, the injustice of it all. I didn’t know how to handle it; I was a teenager struggling to deal with hormones, puberty and spots. But where was the protection from the school? I would very much like to think that this kind of behaviour is not tolerated in schools any more.

Andy's dad holding him as a toddler

My father was a brilliant dad

My father told me he was proud of me every day. He was a brilliant dad and I am so proud of his achievements as a father and as a person. He was an amazing photographer and inspired me to go into graphic design as a career. I got pretty good at it too, all down to his influence.

Alex Brooker mentioned his concern about how he would hold his baby should he and he wife be blessed with a child. This photo of my dad holding me was taken in about 1970. It is the only photo I have of the two of us – he was always the other side of the camera. You can’t keep a good man down, even when they are told that parenting probably wasn’t for them.

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

From callipers to climbing Ben Nevis – Disability History Month

Mountaineer and writer John Hawkridge is 68. He is one of a number of older disabled people who contributed to the Disability Voices website at the British Library Sound Archive as part of Scope’s Speaking for Ourselves project.

For Disability History Month, John remembers when he could run as a child and how in later life he tackled Ben Nevis.

Wearing callipers

John as a boy sitting on a step
John as a boy sitting on a step

Unfortunately for me I got selected to be fitted with iron callipers. So all of a sudden you find yourself in leg irons, and you know from being able to run, they’ve put you in these leg irons, and you can hardly stand up, never mind run. And they put you in them, and they tighten all the leather straps on you when you’re in. You know, it’s basically, it’s just a form of torture; they’re just forcing your joints against what they want to do. And so, you find yourself, you might be wearing your callipers ‘x’ amount of hours a day. Now bearing in mind I could take these callipers off and run, and run, hop, skip and jump, that weren’t something that I enjoyed at all.

Climbing Ben Nevis

John Hawkridge
John Hawkridge

By seven o’clock I was out and away, and heading up Ben Nevis. Initially there was no one else about, and I had the route to myself, but as time progressed it wasn’t long before people started overtaking me. Throughout the day I made really steady and positive progress, and up through a place known as ‘the Red Burn’, and then the massive, steep zigzagging path that went to the sort of summit ridge, or plateau, and then finally across this, where there were still snow and an ice field to be crossed towards the summit, and I ended up, I arrived on the summit about four o’clock. There were a few people there, and one that stood out was an American chap who, when he saw me coming, started dancing up and down, shouting, ‘What the Hell? I’ve flogged my so-and-so guts out getting to the top of this mountain, and what do I find when I get here? A so-and-so cripple. You’ve ruined my day.’ At which he screwed his stars and stripes up, shoved it back in his rucksack, and stormed off muttering to himself; ‘And I don’t know how the hell I’m going to get back down again,’ and I leant over and shouted to him, ‘That makes two of us!’”

Hear about John’s descent of Ben Nevis with broken walking stick and boot.

Rock-climbing films

In the mid-1970s I’d bought a good-quality Super Eight Cine Camera and had made films of some of the walks that I’d done and rock climbs; the two walks which I’d filmed being the Three Peaks of Yorkshire and the Dales Way – a 100-mile walk from Ilkley to Bowness on Windermere, and also I had some quite good shots of me rock climbing at Ilkley and Brimham Rocks.

In the late seventies I had been showing these films at various places, you know, if I had to entertain anywhere I’d take along me Cine and compiled a film and showed these films. And the fact that I’d been doing these activities had come to the attention of Yorkshire Television who sent a producer/director out to see me, with a view to making a film, and I remember well as he watched this Cine film, an half-hour film that I’d put together, and when it had finished he says, ‘This is absolutely fantastic, this is absolutely brilliant,’ he said, ‘but unfortunately we could never show this or make a film about this, because the public wouldn’t be able to take it…’

Climbing Everest

Books by John Hawkridge

Uphill All The Way book cover
Uphill All The Way book cover

His first book Sticks and Stones was published in 1987. This was followed by Uphill All The Way in 1991.

Listen to John’s life story on the Disability Voices website.

Find out more about Disability History Month on our website.

“You do not need to be in a wheelchair to be disabled!”

Guest blog from Fi Munro. Fi has been living positively with stage four ovarian cancer since her diagnosis at the age of 30. 

Since her diagnosis she has personally raised and inspired others to raise thousands of pounds for various charities by sharing her story. As a blogger and campaigner, she strives to improve awareness of ovarian cancer.

She uses a colostomy bag and has recently experienced a number of negative attitudes when using a disabled toilet at London King’s Cross Station.

Okay, I’m getting on my soap box.

I hate, hate, hate the ignorance and stigma around invisible disabilities. Let’s get one thing clear, you do not need to be in a wheelchair to be disabled!

In January 2016 I was diagnosed with stage IV ovarian cancer and then in May 2016 I had a massive operation to remove five organs and a few partial organs. This resulted in me having a colostomy bag, which I’ve talked about at length in a post on my own blog.

One of the main impacts of this is that I need to use a disabled toilet now to ‘sort myself out’ and I even have an awesome universal radar key that opens all disabled toilets with a ‘radar lock’ – handy!

Fiona, a young disabled woman, smiles and poses for a photograph

Are you a doctor?

At the weekend, I was in London Kings Cross Station and before boarding the train I went to use the disabled toilet. Changing a colostomy bag on a moving train is not a pretty sight, especially if you are receiving ongoing cancer treatment. I’ll let you use your imagination!

There were two disabled toilets and both were occupied so I waited. On either side there were lengthy queues to the ‘normal’ male and female toilets. When one of the disabled toilets became free I went to enter and a staff member put their arm in front of me and told me that I couldn’t use it because I’m “not disabled”.

Erm, wait a minute!

Are you a doctor?

More importantly, are you my doctor?

Are you psychic?

Do you have any idea how offensive that presumption is?

I was so upset! In front of a crowd of people I had to explain my situation in detail before I was allowed into the toilet. And, as those of you with a colostomy know, time is precision in these moments!

When I was finally allowed in I locked the door and burst into tears!

It didn’t get better from there either. I came out to ‘tutting’ observers and staff shaking their heads. I was so upset and felt so stigmatised. This needs to change!

Not all disabilities are visible

Fiona, a young disabled woman, smiles with her colostomy bagWe need better public awareness and better staff training. I would like to highlight that I am not so much upset with the member of staff I mentioned – more so the lack of training given to them and also the lack of awareness from the general public around invisible disabilities.

Together we can make a difference and help remove stigma by recognising that not all disabilities are visible.

Please share and help ensure that no one else is made to feel stigmatised.

Thank you!

Love and light, Fi

You can follow Fi on Facebook or read more about her experiences on her blog.