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?

My big challenge – running the coast of Britain for Scope

A year ago, Chris Shipley decided that he needed a new challenge. On 26 February 2018 he started out from Southampton on a 5000 mile trip around the coast of Britain, which he plans to complete in under 10 months. In this blog he talks about his challenge and why he’s raising for money Scope.

I took up running four years ago. Since then I have taken part in two obstacle world championships and a European championship. I came first in an 18 hour endurance run and finished eighth in Europe’s “toughest mudder” race this year. Last year, I cycled back home from Switzerland through some of the worst floods seen in France.

A new challenge

I like to stretch myself physically and mentally. I read a book about someone who cycled the coast of Britain and was inspired by the story. I always wanted to do a long trip on foot or by bike. I was Influenced by Ed Pratt who is cycling around the world on a unicycle.

I didn’t really plan anything!! I chose the direction and date and saved up some money. I tested out my gear by camping locally in cold conditions.

How it’s going

So far, I’ve ran over 1400 miles and had some great experiences along the way.

I set off from my home in Southampton and just over 2 months later, I reached the most northerly point in Britain – John O’Groats.

It’s tough going at times, I’m on my third pair of running shoes! I vary the mileage according to the terrain but most days on average I’ll do a marathon each day, around 26 miles. On my best day so far I managed an astonishing 42 miles.

I carry a tent, cooking equipment, food, clothes and not much more, so I can stop pretty much anywhere.

There have been a few ups and downs but I never let situations get me down. When I started my challenge the “beast from the east” arrived but I soldiered on. I’ve encountered all that the British weather can throw at me and still carry on!

Food keeps me going although I haven’t had a burger in a while! I keep focused on the goal ahead and reaching the end of the challenge. The fabulous scenery and people you meet are really helping to keep my spirits up and keep me going.

My nephew Alfie has cerebral palsy and he’s the reason I’m raising money for Scope. We love the work that Scope does to create equality for disabled people. My mum also works as a carer so it’s something we’re all really passionate about.

Raising money for a worthy cause that supports people is important to me. Testing myself both mentally and physically is also very important.

Highlights along the way

I’ve met many people on my trip so far and have been overwhelmed by the support and encouragement. There really are some great people out there. I’ve even talked to pupils at a school about my challenge and used the opportunity to talk about Scope’s amazing work.

Man standing in a school gym

There have been so many highlights so far. Whilst running through Skegness, I saw an opportunity to top up my fundraising so I stopped and completed a “hang tough” challenge, went sailing in Scotland and even met a cyclist going around the coast of Britain going the opposite way and lots of other challenges.

Man standing outside a fairground ride.

If I reach my target, I’ll do an extra challenge

If this wasn’t a big enough challenge, I’ve decided to up the ante and complete a challenge within a challenge. If I raise £5000 before 21 June I’ll run for 24 hours straight from 6pm to 6pm the next day. Please sponsor me – not only will you been helping me achieve my goals,  but supporting a great charity that’s close to my heart.

You can sponsor Chris on his JustGiving page and follow his journey around the coast.

The things that people say never go away

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.

Marie is a college tutor, wife and mother whose experiences feature in the report. In this blog, she revisits some funny and not so funny moments, and talks about the impact of negative attitudes.

I’ve got osteogenesis imperfecta, also known as brittle bones. It means my bones can break easily so I use wheelchair, I can’t stand or walk. I’ve experienced negative attitudes throughout my life – some awkward moments you can’t help but laugh at, and others which have actually held me back from living my life.

Because I’m disabled I couldn’t possibly have a love interest

I can’t tell you the number of times people have bumped into lampposts or tripped over on the street because they are too busy staring at me. When I’m out with my husband Dan, it can be even worse.

Once, when we’d just started dating, we were on the way home from the pub, holding hands and we stopped to look at the stars. What could be more romantic? A kiss seemed like the natural thing to do.

After a moment, I became aware that a police car was driving past very slowly. The officer was staring out of the window and was concentrating so hard on us that he ended up mounting the pavement and crashing into a street sign. We couldn’t believe it! A few seconds later he sped off, clearly embarrassed.

We still laugh about that incident now. We have to laugh – if we took these things too seriously it could start to mess with our heads.

Marie and Dan kiss outside the church on their wedding day
Marie and Dan share a kiss on their wedding day

We often hear people making comments. People don’t blink an eyelid if they see any other couple kissing in the street but because I’m in a wheelchair and Dan’s not, we become an immediate target. I think when people see us, they can’t quite believe that a guy who isn’t disabled could have fallen in love with me.

If Dan and I aren’t being affectionate, it’s a different story. Trying to convince people he’s my husband takes some doing. One time, a hospital consultant asked me if Dan was my dad! When I said no, she presumed he was my brother, then my uncle, and finally my carer. I let her go on and on before she petered out. It’s that  assumption that because I’m disabled I couldn’t possibly have a love interest.

I was told “We don’t have any jobs for people like you”

When I finished my degree in Health and Social Care in 2011 I didn’t have a lot of luck finding a job. I went to the Job Centre for support and their attitude was “Why do you want to work?” and “We don’t have any jobs for people like you.” There was no help or aspiration.

Being told not to bother working made me feel angry and upset. I’d spent so many years studying, I’d put everything into my degree, I’d worked in the past and I wanted to progress. It made me feel worthless, like I couldn’t contribute towards society like anyone else.

Woman wheelchair user holding a sign saying "#workwithme"
Marie features in Scope and Virgin Media’s employment campaign, Work With Me

I decided not to put that I was disabled on my CV because I felt like I wouldn’t get an interview. I often managed to get interviews but when I turned up I could tell by people’s reactions that I wasn’t going to get that job. I think it was largely because they didn’t understand my impairment and didn’t want to take the chance.

If you’re disabled, it can be difficult to progress in your career too. I’ve had many different jobs and at times I felt like I was being treated like a child because employers didn’t allow me to use my skills and knowledge. I ended up leaving one job. If people aren’t going to accept me for who I am and what I can do, why stay?

The things that people say to you never go away. There have been times where bad attitudes have made me feel like “What’s the point in working?” I just wanted to find an employer who would give me a chance, like anyone else would be given a chance.

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?

Our new report shows disabled people still face negative attitudes

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.

The way other people act towards us can have a huge impact on how we view ourselves and our role in society. An occasional moment of rudeness or being ignored may be a minor inconvenience or annoyance. But the more it happens, the more the impact adds up.

For many disabled people, this will sound all too familiar. Whether it’s outright hostility, or seemingly minor incidents that add up to a hostile atmosphere, prejudice remains a common occurrence. Negative attitudes from others can be one of the biggest barrier to disabled people living life the way they want, and more needs to be done to tackle them.

The research in this report was carried out on behalf of Scope by the National Centre for Social Research as part of the annual British Social Attitudes Survey.

What is the Perception Gap

According to our new research released today, one in three disabled people still feel that there’s a lot of prejudice against disabled people. But only one in five non-disabled people think the same. This is what we’re calling the disability perception gap.

It may seem self-evident that disabled people face prejudice, but many non-disabled people do not understand the scale of the negative attitudes towards disability.

Some difference wouldn’t be surprising – disabled people have to live with this prejudice every day, whereas non-disabled people may only ever know about it second hand.

But this gap is growing. In 2000, there was only a slight difference between the views of disabled and non-disabled people when it came to disability prejudice. Over the last 20 years, however, the gap has trebled.

Illustration of the gap in perception between disabled and non-disabled people
“The gap between disabled and non-disabled people’s views of prejudice has trebled since 2000” – Disability Perception Gap

There is now a real danger that many non-disabled people think that disability prejudice has been tackled long before it has been, which could block further attempts to improve the situation. Instead of this complacency, we need to make sure that the experiences of disabled people are listened to and put at the heart of any programme designed to address negative and harmful attitudes.

Being close to disability can help

When it comes to improving understanding, it seems that nothing beats personal contact with a disabled person. Whether it’s a colleague, a friend or a family member, having a relationship with a disabled person makes a real difference to non-disabled people’s attitudes.

For example, 10 percent of people who claim not to know any disabled people think of disabled people as ‘getting in the way’ some of the time – an opinion held by only 3 percent of people with a disabled colleague.

However, a third of the population claim not to know a single disabled person. This means that their views on disability are far more likely to be based on stereotypes than any knowledge of what life is like for a disabled person.

Any attempt to improve attitudes will have to increase people’s understanding of what it means to be disabled, and the challenges that disabled people face on a daily basis.

Driving change

To do this requires a concerted effort across society to tackle prejudice and negative attitudes towards disabled people. This should include a variety of spaces; from the classroom to the boardroom, and all points in between.

This is why we are calling for efforts to get more disabled people into work to be amplified. With only 7 percent of people saying they have a disabled colleague, a million more disabled people in work could make a real difference to people’s views of disability and disabled people.

It’s why we’re calling on the media to do more to ensure that disabled people and their experiences are properly represented on screen. By supporting disabled talent, they can show what it means to be disabled in 2018.

Such efforts on their own will help, but they won’t be sufficient. We need a coherent approach to improving attitudes across all areas of life. Earlier this week the Government announced a new working group to look at the issues facing disabled people.

We’re calling on this group, and the rest of Government, to take prejudice seriously and launch a new cross-departmental disability strategy, focussed on improving attitudes and reducing prejudice towards disabled people.

What comes next?

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?

Why I encourage talking about mental health at work

This year, Mental Health Awareness Week (14-20 May) is focusing on stressNot only can stressful work environments impact on your mental health, if you don’t feel supported, it makes things even harder.

Richard worked for years in a high pressure environment which sometimes made his OCD symptoms worse, but he carried on working, until the attitudes of his managers  made it impossible. Now Richard has set up his own company where he promotes a supportive work environment. In this blog, he shares his story.

I’ve experienced symptoms of Obsessive Compulsive Disorder (OCD) since childhood, and was formally diagnosed at 25 whilst working as a producer at an independent production company in London.

Talking about my OCD never seemed like an option

Looking back, I think the moment to moment existence of being a freelancer, constantly having to think about your professional reputation in an environment with high staff turnover and time pressures, made talking about my OCD never seem like an option, although sometimes it could be hard to hide from colleagues.

I never took a day off sick, and if anything I think my OCD may have increased my work productivity as losing myself in work could be a distraction from my anxiety. But there is no doubt that being in high pressure work environment could make my symptoms more distressing, which impacted on my overall well being and personal happiness.

It was during this time that my symptoms intensified , I was experiencing intrusive thoughts and my obsessive behaviour escalated to point where even simple day to day tasks such as leaving the house were taking up to an hour to complete.

It felt as if I was at a point of crisis. I reached out to some close friends and with their support and encouragement  I eventually gained the confidence to visit my GP.

Throughout this, I was still going to work, I didn’t take a day off, and was doing my job.

Unless the ‘old Rich’ came back, my job would end

I lost insight into my OCD day by day and my anxiety levels continually rose.  I didn’t receive any support from my colleagues until one day when two of my senior managers asked to speak to me.

I was taken into a meeting room and told that they wanted the ‘old Rich’ back. Still terrified to admit I was unwell, I sat through the conversation not able to say a word. The conversation resulted in me being told that unless the ‘old Rich’ came back then my job would end.

There was no sense of compassion or concern, no observation that my behaviour could have been a symptom of my mental health, or that I could of been struggling and unwell. My contract shortly ended and I didn’t work at the company again, not that I wanted to.

Creating a supportive work environment

In 2010, a few years after this experience, I set up my own production company, along with a close friend. The pressure of that can sometimes exacerbate my symptoms but the reward and freedom, and having supportive colleagues that understand the realities of OCD and its impact, has been really valuable.

I think my experience with OCD may have contributed to the kind of work we now specialise in; human interest stories of challenge and triumph.

As an employer, I encourage openness, celebrate diversity and champion difference. I genuinely believe that we are all different, we all have our struggles and creating a supportive work environment not only enriches those we work with but also benefits the work we do.

Mental Health Awareness Week is a great time to talk about mental health and reduce the causes of work-related stress. If you’d like help creating a mentally healthy workplace, have a look at the resources on Mind.

If you’re experiencing problems with your mental health, or worried about someone you know, you’re not alone. There are a range of ways to get help.

Could you be part of the next generation of disability campaigners?

We are looking for aspiring young campaigners to join Scope for Change, our campaign training programme for disabled people aged 18 to 25. It’s a free, six-month programme, and no previous campaigning experience is needed. Find out more and apply to take part.

Disabled people face many barriers to equality – whether it’s negative attitudes, unnecessary extra costs, inaccessible environments or a lack of support in education or work. But we know that it doesn’t have to be this way, and that young disabled people have the drive and skills to help make change happen.

We first launched the Scope for Change programme in 2016 to support young disabled people gain the skills and confidence to campaign on issues they cared about . This first group of campaigners set out to tackle a variety of issues: encouraging museums to be more autism-friendly, making British Sign Language lessons at university more accessible and affordable, gaining step-free access to local transport, and raising awareness of hidden impairments.

Ellie, who took part in 2016, campaigned for greater accessibility at nature reserves. Here’s what she had to say about her campaign:

“I want to further educate those working in the conservation sector to make sites of natural interest as accessible as possible: providing ramps up to bird hides, having blue badge parking spaces, braille or audio information boards, allowing assistance dogs, and accessible toilets… Opening up the senses in particular for those with profound and multiple disabilities is so important – and where better to do that than a national park?”

It wasn’t just their campaigns that benefited – many of the group said that being part of Scope for Change gave them a sense of solidarity with other disabled people and boosted their confidence. No longer feeling like they were working alone, the campaigners could collaborate, share experiences and learn from each other.

Why get involved?

Now Scope for Change is back for a new generation, to tackle more obstacles on the road to everyday equality. We want disabled young people to be empowered to make decisions about their lives, influence change, and make real progress in their communities and wider society.

Over a six-month period, we will support the Scope for Change group to plan, launch and their own campaigns to make change on the issues that matter to them. This will be backed up with ongoing support from Scope staff and a three-day residential training event to learn all the skills needed to create a winning campaign strategy.

Does this sound like the opportunity for you? Apply for Scope for Change now – applications close on Monday 28 May.

“I don’t want pity, I want you to do something about it” – my experience of disability hate crime

We’re pleased to see Changing Faces’ new campaign which aims to raise awareness of disability hate crime. The campaign tells the stories of people who have experienced abuse because of their appearance and gives advice on how to get help. In this blog, Gem shares her own experiences.

I’m really happy to see the new campaign by Changing Faces on disability hate crime. Hate crime happens to disabled people all the time. People think they can get away with it because it’s not taken seriously and even if you know how to report it, it gets tiring when nothing really changes.

I hope this campaign raises some much-needed awareness and gives people the confidence and the resources they need to report a hate crime.

My own experiences of hate crime

Recently, I was at work eating lunch in the cafeteria and I noticed three men looking at me. I’m used to stares so I fobbed it off, but then I noticed one of the men had his phone out and he was clearly taking photos of me and smirking at his friends. I started to feel a bit sick.

They got up to leave and as they were walking by I shouted, “Excuse me”. The guy that was taking pictures ran off but his friends came over and I asked them “Was your friend taking pictures of me?” – they said no but I could tell that he had been.

I was really upset but I acted as if I wasn’t bothered. When I got back to work, I reported it because I would hate for it to happen to anyone else. My employer handled it really well and helped me report it as a hate crime.

They went through CCTV and tried to catch the people but they couldn’t find them. I don’t mind that they weren’t caught, the reaction of my employers was enough for me. I was grateful that they took it so seriously.

Gem smiling, in her wheelchair, with a handbag on th side

Changing Faces reports that on average there are 67,000 disability related hate crimes every year.

It’s likely to be much higher – their survey found that only 30% of  respondents who had experienced hate crime reported it to the police, and many people don’t even realise it’s a hate crime.

Hate crime really affects your life

Incidents like this might not seem like a big thing to some people but it had such an effect on me. I’m trying to get over it but I’m still nervous around people and I’m looking around me more vigilantly. It’s annoying, I’m not usually like that. It’s something I’m warier of now, especially with the rise of social media.

Someone taking photos of you is embarrassing and it’s intimidating. Those photos could have gone anywhere online. It just baffles me that people could do that to someone just because of your appearance.

There’s the classic attitude that ‘little people are funny’ and I don’t understand it. There’s not enough diverse representation in the media. If people only see little people doing comedy, it creates the attitude that it’s okay to laugh at disabled people.

People also shout at me all the time, on the street. They say, “Oi midget”, things like that, especially on nights out when people are drunk.

I’ve also had taxi drivers physically try to yank my wheelchair out of their taxi when I’ve already said to them “Please don’t touch me, please don’t touch my chair”. I’ve got brittle bones so I have to be careful. It had me in tears. He wouldn’t do that to someone not in a wheelchair. I can’t believe that people aren’t aware that things like that are a hate crime.

Gem smiles at the camera in her wheelchair in an office

I don’t want pity, I want you to do something about it

Even if people do know they’ve experienced a hate crime, they haven’t got enough support to report things. And when I reported my incident, I got sent loads of leaflets about hate crime – but it’s a bit late after it’s happened. It’s quite dangerous that it’s still happening and there’s no real acknowledgement in society that it’s wrong or a plan to tackle it.

Changing Faces’ research found that only 18% of people believed that the police would deal with a hate crime effectively if they reported it.

If I tell people about it and I’m upset, they’ll be like “Oh bless”, but I don’t want to be pitied, I want you to do something about it. People aren’t aware of how to deal with these complaints. The people we’re reporting to need educating on what it’s like and how to deal with it.

I’m not asking for special treatment, I just want to be treated like everyone else.

Read stories, support the campaign and share your own experiences on Twitter @FaceEquality.

If you’ve experienced hate crime, you can find out about reporting hate crime on Changing Faces’ website.

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

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