How growing up with cerebral palsy helped me achieve my dream of being an author

Throughout her life, people have made Rachel feel like she couldn’t achieve as much, because she has cerebral palsy. Those negative attitudes always spurred her on and today her hard work has paid off. Not only is she realising her dream of publishing a novel, she’s done this alongside her full time job, proving that with hard work, you can achieve anything.

In this blog, she writes about determination, pursuing your goals and seeing disability as a strength. 

Having had cerebral palsy since birth, I realised when I was in primary school that I would always have to work harder than everyone else to achieve my dreams.

I worked so hard to learn to walk, to hold pens, to tie my shoelaces and to fasten buttons. Sometimes, I’d become angry and frustrated at not being able to do things my friends could but then I started to think about alternative ways of doing things, such as getting Velcro put on my shirts and shoes.

I have difficulty holding a pen, so it took me longer to write essays and do homework. Despite that, I loved writing diaries and stories as a way to understand my experiences and I dreamed of being a writer.

Having spent hours of my childhood having physio on my legs and hands to improve my co-ordination, it was ingrained in me that if I put the effort in, I would reach my goals. Which is why, when working full-time as a primary school teaching assistant, I decided to stop writing in my notebooks and actually knuckle down to take writing seriously.

My own experiences shaped my novel

When I started my novel, I wanted to use my writing as a vehicle to say something about my life. I chose to write about a young woman with a facial birthmark and relate some of my experiences and feelings growing up with cerebral palsy through her.

One theme in particular is how suffering cruel comments as a child forms her view of herself as an adult and how she finally accepts herself. The main difference between my central character and me is that Ivy can cover her disfigurement whereas my impairment is on view to everyone I meet.

People sometimes make judgements when they first see me. I’ve also had strangers ask what is wrong with me which I find intrusive. I can almost hear them breathe a sigh of relief when I say ‘cerebral palsy’ as they can compartmentalise me beneath that neat label.

A book on a table next to a mug of coffee

Not giving up

There have been some evenings after challenging days in school when I just felt like sitting in front of the T.V. instead of looking at a computer screen for three hours. But having a long-held dream in my sights of becoming an author, I stuck at it.

Early last year, I submitted my first three chapters and synopsis to half a dozen literary agents. A couple got back to me to say that they liked my writing but my novel didn’t fit their list. Although disappointed, I was heartened by their response to my novel and I wasn’t about to give up on my dream.

The theme of the book is about putting the past behind you to live every day in the best way you can, which resonates deeply with me and I felt it was a message other people should read. So, I was delighted when the Book Guild offered me a publishing deal!

Seeing disability as a strength

From an early age, having cerebral palsy has given me a different perspective on the world to most people, forcing me to question why people act the way they do towards me, aspects which I’ve incorporated into my writing.

Writing is also all about hard work, routine and perseverance. Growing up having to spend hours learning how to walk or how to pick up and use a pen gave me qualities which have enabled me to complete my novel and achieve my dream of becoming a writer.

Somehow, I’ve managed to write a novel while having a full-time job and I think it’s my sheer determination that has got me through it.

Having cerebral palsy has not only made me into the writer I am, as I touch on disability themes in my work, but it’s been a defining factor in achieving my writing dreams. 

Roses of Marrakech by Rachel Clare is out this week. We’ll be giving away two copies over the weekend via Facebook and Twitter, so get involved!

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

I’ve been left on trains and called ‘a wheelchair’ – train companies need to improve their treatment of disabled customers

This week, BBC Rip Off Britain highlights the experience of disabled passengers on trains. Far too often, inaccessible transport stops disabled people from enjoying the same opportunities as everyone else. In some cases, people have been through stressful and upsetting incidents – from train staff forgetting them to being treated like an object. In this blog, Steph shares her experiences. 

Every day across the UK 100s of disabled people are left stranded on train platforms. As a wheelchair user, I use trains frequently to go to work and to socialise. But, of course, the one thing that I’m constantly aware of when travelling is accessibility.

When it comes to train travel, both locally and nationally, train companies have issues with the way that they deal with disabled people.

If you’re disabled, you always have to plan ahead

I have to plan my journey before I go anywhere in ways that non-disabled people don’t need to, and I rely on the services of train companies to get me to my destination without a hitch but this isn’t always the reality.

There have been instances when a member of staff at my local station has been unable to put me on or take me off the train due to medical reasons. They said “Our staff will always do their best to assist customers, but there may be occasions when they do not have the physical ability to place ramps. In such circumstances, alternative transport will be arranged.”

While they do offer a taxi to take me to the next accessible station, this can take over an hour to arrive, or they ask me to phone them in advance to book travel, which isn’t always possible.

I feel panicked when assistance doesn’t show up

Sometimes, when you can book assistance, nobody shows up. There have been several times when I have booked assistance with a train company and a member of staff has failed to meet me at the station, leaving me panicked because I don’t know whether they will come and take me off before the train departs.

And it’s not just me. Ceri Smith, Policy Manager for the disability charity Scope, spoke on BBC Wiltshire in April and said that ‘1 in 5 disabled people who have booked assistance on a train only to find that there isn’t assistance to get off the train at their arrival station’.

This is a very simple part of the service I expect as a disabled person. But when this occurs, I am left questioning why I should book assistance in the first place if this need can’t be met.

Steph a disabled woman smiling, sitting in her wheelchair in front of a radiator and white wall

I can’t use some train stations, so journeys take a lot longer

Not being able to go to a station due to lack of physical access is also an issue. My local train company, has a policy in place to order a taxi to take me to the next available station. This sounds like a good idea in practice, but the reality I’ve found to be completely different.

I went to Port Sunlight on a trip to the theatre and I found out at Central Station that it wasn’t accessible. It really baffled me that this is the case as Port Sunlight is a prominent tourist attraction.

I needed to travel to the nearest accessible station and get a taxi from there. There weren’t any accessible taxis available, and so the suggestion was to get one from Liverpool which would take over an hour at least.

Things like this are a real inconvenience to me.

Things are improving, but there’s more to be done

Of course, this is not to say that there aren’t staff who do their jobs well and provide great service for disabled people because there are and that certainly has been the case for me.

There has been improvement. Under the Access for All programme, introduced in 2006, The Guardian stated that ‘150 stations have been upgraded to remove barriers to independent travel, including by installing signs, ramps and lifts. A further 68 are under construction or in development.’ But, at the same time, I feel that disabled people are still not being taken seriously across the board when it comes to train travel.

It would be fantastic to see train companies work with disabled people directly to ensure that the policies they offer, when it comes to an element of the journey not being accessible, are realistic. And if they aren’t, they need to find an alternative that really works.

Also, the attitudes and terminology staff use towards disabled people who travel by train are important too. I’m not an object, so don’t call me a ‘wheelchair’. Instead, use the term ‘wheelchair user’, it’s far more appropriate.

We want to feel empowered, respected and valued just like non- disabled people. There’s progress that is being made, but there is so much more that needs to be done.

Keep the conversation going on Twitter by sharing your experiences, tagging @Scope and using the hashtag #RipOffBritain.

Or join the discussion on our online community.

My physical limitations are often the least of my worries – other people’s attitudes are the problem

Our new report, The Disability Perception Gap, reveals the extent of the negative attitudes that are held towards disabled people – and how many non-disabled people don’t realise the scale of the problem.

Many people have responded to this, sharing their own experiences. In this guest blog, Chloe, who has cerebral palsy, talks about her life as a young disabled woman – and why she became a Scope Role Model to change attitudes.

I like to think that my impairment is a small part of me. In theory this is true, in practice it can be a very different story. Having cerebral palsy and a visual impairment does affect my life and always will do, yet the physical limitations are often the least of my worries. It is actually everything outside of what you would think that is the most limiting, with attitudes being at the forefront of it all.

Subtle prejudice is common, and can be just as frustrating

Negative attitudes towards disabled people are not always the more extreme things that may come to mind. It would be a lie to say disabled people are not faced with hate crimes and people being aggressive towards them. However, attitudes can be much subtler than this. From my own experiences it is so common for people to talk to the person I am with, even if it is about me!

The most recent example of this was when my PA was asked if I would like a copy of the menu in Braille, I was stood right next to her. I personally would not benefit from a Braille menu, but it is amazing the one was available. If the woman would have asked myself then the whole situation would have been perfect and incredibly accessible.

On the other hand, if they are talking to me it can come across as patronising or as if they know what is best for me. I fully appreciate that some people don’t know what to say, but why treat us like we are lower than you just because we have a disability?

Chloe standing in front of students, laughing
Chloe is changing attitudes through her work as a Scope Role Model

We’re seen as not capable of certain roles

I believe that current attitudes can also stem into the roles in society which we are able to play. Sure, we can be Paralympians, motivational speakers or disability activists. In fact I am extremely proud to hold of one these roles.

However, attitudes often limit us to these roles and society forgets we are capable of being their retail assistant, accountant or hairdresser. They forget we have dreams and aspirations just like them over the career we want. I understand that some impairments may limit roles we have to a certain extent but that’s for us to figure out – not to be told by members of the public.

Negative attitudes have made me doubt myself

These types of negative attitudes can have a significant impact. Despite attitudes being the opinions of others, it can make you feel incompetent and less worthy of certain opportunities.

On the other hand, at times it can be hard to justify your own achievements beyond ‘they only gave that to me because I’m disabled’. This is reinforced by the attitudes of other people. It is hard to overcome these views when you are faced with it every day and can be extremely damaging.

It can also lead to moments of doubt, even if this is completely out of character. I clearly remember struggling to walk up a school corridor because I had a cast on which was painful. Two girls, who were several years below me, walked past and for some reason I couldn’t help but be so disappointed in myself.

I’d just become Assistant Head Girl and I was so proud of this but couldn’t help thinking “How on earth are you good enough to be Assistant Head Girl, potentially having younger students look up to you, when you can’t even successfully walk down a corridor!”.

I have learnt that this internal monologue is not true at all, and yet I thought this because of the attitudes I am surrounded by. Fighting them away would have been near enough impossible if it wasn’t for my incredible support network.

Chloe smiles at the camera, with seated students behind her
89% of students felt less awkward about disability after attending a Scope Role Models session

I became a Scope Role Model to change attitudes

So, what is the next step? We cannot go on like this and something must change. In my opinion, improving attitudes can come about by challenging stereotypes which often are deep- seated within society.

We need to open our eyes to the reality of having a disability and that we are not as far forward as we believe. This includes the fact we can play a role within society, but also that having a disability can be hard and can be extremely challenging to live with at times.

Scope Role Model programme is working on normalising disability in schools around the country and I love being part of this. I don’t mind being asked questions by the students and I will be honest with them because this is the only way progress is going to be made. Not everyone has to share their story, but I choose to do so.

Why not see a disabled person as an individual who is just as unique as yourself? A person who is just as capable and who has needs that are just as important. Treat us the same as you would a family member, friend, work colleague or professional. With respect, humanity and belief.

Chloe is a student, writer, disability activist and Assistant Coordinator at CP Teens UK. You can read more of Chloe’s work on her award-winning blog.

Scope’s report is the start of something, not the end. We will be working to better understand how negative attitudes impact on disabled people, and how these can best be tackled.

There’s no single fix for this problem, and as part of our campaign for everyday equality for disabled people, we’d like to hear about your experiences and what you would like to see change.

Will you support our campaign by telling us your experiences?

People think there isn’t much prejudice towards disabled people, but this is my daily reality

Our new report, The Disability Perception Gap, reveals the extent of the negative attitudes that are held towards disabled people – and how many non-disabled people don’t realise the scale of the problem.

In this guest blog, Abbi, who has brittle bones, talks about her life as a young disabled woman – which is far from prejudice free – and why it’s vital that the public recognise this.

It’s May 2018, and my friends and I are on a university reunion weekend in Cambridge, dancing the night away in our favourite shabby student nightclub. As always, my being disabled is a practical consideration of the night – my friends are well-trained in lifting my wheelchair up steps, or dancing in a protective circle if the club is particularly crowded – but beyond that, I’m just part of the group.

Until suddenly, I’m not.

First, I notice a group of boys with a phone camera trained on me, laughing. The boy holding the phone turns the screen to his friend, who laughs too. In the centre of the screen is a video of me, dancing. I shrug it off.

Just as I’m beginning to forget the incident, a man leans down to my shoulder. If I were non-disabled, I might think he was going to offer me a drink, or warn me I’ve got my skirt tucked into my knickers, but as a young disabled woman in 2018, I know exactly what’s coming.

“I just want to say,” he shouts, “I think you’re really inspiring…”

Abbi, a young disabled woman, smiles as she sits in her wheechair

I live my life under the scrutiny of strangers

It’s been four years since Scope’s last report on public perceptions of disability, and I’ve been dancing in that Cambridge club for all of them. Perceptions have changed – but not enough. Disabled people continue to be stereotyped either scroungers, raking in benefits without contributing to society; or inspirations, overcoming all odds to bravely struggle to the shops (and maybe winning a few Paralympic medals along the way).

I’ve lost count of the number of times total strangers have unexpectedly started pushing my wheelchair along streets or across roads, apparently never considering how I would have appeared there in the first place, had I not been able to push myself. I’ve been ‘brave’ in supermarkets and ‘inspiring’ at bus stops; I’ve also been ‘faking it’ in a Blue Badge parking space, and ‘milking it’ at a train station.

I live my life under the near-constant scrutiny of strangers – yet, according to Scope’s recent study, only 22 per cent of non-disabled people still feel there is a lot of prejudice against disabled people, compared with 32 per cent of disabled people.

Until people acknowledge the persistence of prejudice, nothing will change

It’s true that, in theory at least, the UK is becoming more disability-friendly. Accessibility information is often clearly advertised on websites for theatres and events; job applications often reference the employer’s commitment to equality; high-profile court cases such as Doug Paulley’s case against FirstGroup suggest that disabled people can go anywhere, achieve anything.

In practice, even where buses and trains are accessible, wheelchair users continue to be refused access because the designated spaces are filled with luggage or pushchairs. Disabled people have to apply to an average of 60% more jobs than non-disabled people. People with invisible disabilities continue to be berated for using accessible services, or reported to fraud prevention hotlines (despite disability benefit fraud rates standing at under 1% – the lowest of any benefit). Even my own doctors are often surprised that my wheelchair is self-funded, wrongly assuming – like many non-disabled people – that the NHS provides appropriate wheelchairs for free.

It’s easy to see how non-disabled people might believe we live in a largely ‘disability-friendly’ country. The reality is starkly different – as disabled people, and their friends and families, know all too well. And until the non-disabled population recognises the persistence of prejudiced or unequal behaviours, attitudes and systems towards their disabled counterparts, it is impossible for the balance to change.

This report is the start of something, not the end. We will be working to better understand how negative attitudes impact on disabled people, and how these can best be tackled.

There’s no single fix for this problem, and as part of our campaign for everyday equality for disabled people, we’d like to hear about your experiences and what you would like to see change.

Will you support our campaign by telling us your experiences?