All posts by Hayley Tomkinson

I'm in the Stories team at Scope.

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?

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?

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.

“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.

When I became disabled no-one would hire me, but Scope helped me find a job I love

Simone never had a problem looking for jobs before she became disabled. She had good references, experience and qualifications, but when she developed repetitive strain injury, it seemed like none of that mattered. After 15 months of getting no responses, Simone had lost her confidence and her hope. In this blog, she talks about how Support to Work helped her turn things around.

I developed repetitive strain injury a few years ago, a condition which affects my arms and my hands. My employer did try to make adjustments – things like speech recognition software and an adapted keyboard – but it got to a point where being on a computer even for 20 minutes caused so much pain. So, I made the decision to change career.

I didn’t think finding another job would be too difficult. I knew I wouldn’t be able to do lots of computer work, but I had so many transferable skills. But after 15 months of applying for jobs with no response, I lost hope. It got to the point where I was just applying for anything.  It didn’t matter what it was or what the pay was, I was just desperate to work. But I still couldn’t find someone to employ me.

A woman stares into the distance, in front of a bus stop
Disabled people, on average, have to apply for 60% more jobs than non-disabled people.

It was probably the lowest point of my life

It really knocked my self-worth and my self-confidence. You start to feel like you’re not worthy of being employed despite having a great career history. I felt like all my qualifications had been for nothing.

I felt lost, and when you get to that point, you need someone who can sit down with you and go “Okay, so these are your strengths and these jobs would suit you.” But I couldn’t find anyone willing to help. One agency told me “It’s unfortunate but employers will look at you as a liability.”

Then I got in touch with Scope.

The right support turned my life around

They were really quick to get started. When the employment adviser, Zaid, looked at my CV he said, “Wow, this is brilliant. I’m confident that we can help you.”

A women holder a file with office behind her

“I felt a sigh of relief. It felt like someone finally had my back, after months of feeling so alone.”

The main thing that Support to Work helped me with was my confidence. Because my confidence had taken such a huge knock, I didn’t feel like an employer should employ me. I didn’t think I was worth it. But when Zaid made so many nice comments about my CV and gave me so many ideas for what I could do, I started to believe in myself again.

I think I’d been coming across as negative on applications, but he helped me find the right approach to tell employers about my condition and talk about what I can do with simple adaptations.

With my new-found confidence, I applied for a role as Operations Assistant and I got an interview straight away. The interview went really well and I was offered the job! I felt uplifted. I was so happy. I was smiling for days.

For a long time, I couldn’t see a future but Support to Work really turned my life around.

Two women and a man chatting in an office, holding mugs
If you’re a disabled job-seeker, Support to Work can help you build confidence and develop skills for your job search.

My advice for employers

I love my job and I feel like my employers have exactly the right attitude. At the interview, I talked about my condition and they said, “You’ve got the skills we’re looking for, it won’t be a problem”. It put me at ease straightaway. I wish all employers thought like that when it came to hiring people.

Once in work, employers should make conversations about adjustments easy. In my current role, I feel confident that I could ask for changes if I needed them. I’ve got an open communication with my manager so if I do have any problems we can find a way to work around it. I also think they should be open to doing things differently. At work, I’m not afraid to say, “Look this is a bit much, can we do it a different way?”

Another piece of advice is to take advantage of schemes like Access to Work, which paid for my adaptive equipment – things like dictation software and an adapted keyboard – it hasn’t cost my employer anything and it enables me to do my job well.

Ultimately, I want employers to look beyond someone’s impairment or condition and focus on the skills and experience that they would bring to the role. Just because someone is disabled, doesn’t mean they won’t be an asset for your organisation.

Support to Work is funded by Virgin Media as part of our three year partnership to understand and tackle the issues disabled people face getting into and staying in work.

Our ambition is to reach one million disabled people with employment information and support by the end of 2020, so they can get into work, stay in work and realise their career ambitions.

If you’re a disabled job seeker, you can sign up to Support to Work on Scope’s website.

I get treated differently just because I’m disabled, I’m determined to change that

Michelle was born with cerebral palsy and growing up she never saw herself as different. Then she went to a mainstream college and everything changed. People treated her differently and it really knocked her confidence. Rather than let it beat her, it motivated her to change things and she’s been raising awareness ever since. For cerebral palsy awareness month, she shares her ‘dos and don’ts of disability’.

I grew up going to a specialist school so everyone around me was disabled from nursery up until I was 18. Then I went to a mainstream college and that was a big culture shock. I’d never seen myself as ‘different’ – I was just me – but college completely changed my outlook on everything. People treated me differently and it really knocked my confidence.

Until then I hadn’t realised that being disabled can make you so segregated – you could tell that certain people just didn’t want to talk to you, they didn’t want to get to know you. People would either make mean comments or be overly nice because they felt sorry for me and I felt like I was fighting a battle every day. I just wanted to be treated like everyone else.

Woman in a car smiling

I’ve never disliked anything about myself but going to college made me realise that not everyone is going to be accepting and you do need to work harder just to prove that you’re a ‘normal’ person.

I think a lot of the time it’s because people just don’t understand. If they have grown up around disability or known someone who’s disabled, it’s not surprising. Up until recently, you’ve never really seen disabled people in the media so, when someone sees someone who’s a bit different from them, they’re not going to know how to act or what to say.

A lot of the girls I went to college with said they’d never known someone who’s disabled. All they had was this made up idea that disabled people are all the same. They’ve got these preconceived ideas and then they’ve never met anyone who’s disabled to prove that idea wrong.

My experiences at college completely changed my outlook and made me determined to change things. People need to be educated, people need to see disabled people in the media more. Then being around disabled people won’t be a big deal, because it will just be what they’re used to seeing every day. It becomes the norm. In the meantime, here are a few of my dos and don’ts.

Man pushing woman in a wheelchair. Text says 'the dos and don'ts of disability'

Do talk to me

I’m perfectly capable of speaking for myself but people speak to the person I’m with instead of me – even doctors. I’m sitting right here, you should have enough respect to talk to me instead of talking about me. Then, when I answer, they still don’t speak to me and it’s so frustrating because I’ve just answered you, you can see that I’m perfectly capable of talking to you but you carry on ignoring me anyway.

Don’t talk down to me

People talk down to you or act like you’re stupid. You’ll be out somewhere and people will go “Aw are you okay?” like I’m a child. No. I’m 28. I don’t need you to speak to me like I’m stupid. When people are patronising and treating you like you’re stupid, that can be just as damaging on your self-esteem.

Do take my word for it if I say I don’t need help

People often go “Do you want help?” and I say, “No I’m alright thanks” and then they just take over and do it anyway, not listening to what I’ve said. Sometimes, they don’t even ask, they just do it.

And definitely don’t push my wheelchair without asking

Some people will just push my wheelchair. I’ll be out somewhere and someone will go “Oh I’ll push you” and I’m like “No I don’t need you to do that”. You’d never pick someone up and move them around.

Don’t assume we’re all the same

A lot of people think if they know someone with cerebral palsy, I’m going to be exactly the same. And some people are like “Well you can’t have cerebral palsy because you can do this or you don’t do that.” I know best. Not every form of cerebral palsy is the same.

Do see beyond disability

In the media, people either don’t show disabled people at all or when they do, it’s solely focused on that. Yes, I’m disabled, but I am more than that. I’m a person first. Cerebral palsy doesn’t come before me as a person.

We’re just ordinary people, we don’t want to be treated any differently.  We might do things differently or have to adapt, but we’re just human.

For more dos and don’ts, watch Michelle’s film.

Great to see disability represented at the Oscars, but how far do we still have to go?

Last night, the Oscars results showed that we are moving forward when it comes to representation of disability in film. The Shape of Water – a film featuring a disabled character and uses sign language – won best film (although a disabled actor playing her would have been even better). The Silent Child – which stars a six-year-old deaf British actress and tells the story of her struggle to communicate in a hearing world, won best live action short film.

In this blog, Max Dean, a film lover and writer, reflects on the history of disability in film.

As a fan of horror films, I realise that the representation of disability in this particular genre are, largely quite negative; the most recent and controversial case being M Night Shyamalan’s Split from last year starring James McAvoy.

Before and after the release professionals with patients of dissociative identity disorder (DID) expressed understandable concern over the stigma that the film could place with those living with the condition. Yet, just like Psycho’s portrayal of a real-life mental-health condition, the portrayal of DID in Split is nonsense. People with DID are no more prone to violence than any non-DID person.

Disability in historical cinema

In contrast, one of my favourite films of all time; James Whales’s Bride of Frankenstein (1935), has arguably, perhaps one of the most touching scenes with a disabled character in the history of cinema. To me, it perfectly captures the loneliness that those in the disabled community can face due to misunderstanding across our society and its preconceived perceptions.

In this sequence our main character, Frankenstein’s ‘monster’ comes across an older man with blindness who is living on his own in the woods, shunned by the villagers we see in other scenes who chase the ‘monster’ across the countryside. He befriends our main character. They provide each other with the one thing each has wished for; a friend and companion. The ‘monster’ himself is similarly treated as a monster due to his appearance and supposedly limited and baby like intellect. It is only when villagers come into his home and confront them both that he loses his friend.

In this context, disability is rather refreshingly, seen as a virtue and played in a positive and indeed, very humane light.

Disabled people must be given a genuine voice

A more recent film which has comparable character arcs in its story to the Bride of Frankenstein is The Shape of Water. Due to Sally Hawkins’ excellent performance this has won plaudits as a breakthrough in the cinematic presentation of disabled characters. With this however, it also raises the question of non-disabled actors playing disabled characters.

To show that cinema really embraces disabled people as equals, the film industry must therefore give disabled people a genuine voice. This can be achieved by not only giving more roles to disabled actors but the directors chair itself. Yes, these roles can be sympathetic, but they also must be truly empowered characters.

That would be a truer sign than any, that, we as a society have truly changed to embrace disability and recognised the worth of everyone in it.

What are your thoughts on this year’s Oscar winners? Start a discussion on our online community.

“I have problems with my mobility and I’m at home every day. As a result, my energy bill has shot up”

Our new report, Out in the cold, reveals the high costs many disabled people face for their energy. 

Over a third of disabled people say that their impairment or condition has an impact on their energy costs. Many disabled adults have worried about paying their energy bills, and many disabled households are living in fuel poverty. 

This follows our research published last week which found that on average, disabled people face extra costs of £570 a month related to their impairment or condition.  

Paying more for energy is something that Lynley knows all too well. When she became disabled her energy costs shot up. In this blog, Lynley talks about the impact this has had on her life.

Three year ago I suffered a sacral spinal fracture due to early-onset osteoporosis, which damaged nerves and has left me with permanent neurological pain.

Before I became disabled, I never gave the heating a thought. It wasn’t on very often, but things are different now. I have problems with my mobility and I’m at home every day. As a result, my energy bill has shot up. 

When you can’t move around, you feel the temperature much more and being cold affects my pain levels enormously. I have to wear extra layers of clothing to keep warm and I need the heating on constantly.

I also have an electric blanket for my bed and an electric heat pad which I use to help with my pain. I use electricity to charge my electric powerchair which I need to use to get around outside the house. This needs charging frequently so it’s another additional energy cost.

My bill is so much higher than before. Coupled with the loss of my income as a teacher, this has made ‘getting by’ very difficult. Personal Independence Payment (PIP) helps but there is very little money left over for anything else. I have to prioritise heating so that I’m not in pain.

Life is now very different

Since becoming disabled, my living standards have changed dramatically. I was a professional secondary school teacher in a large comprehensive and was managing five members of departmental staff. I had a large amount of disposable income and enjoyed a fairly busy social life. Things are now very different.

I’m unable to work and now try my best to manage on my benefits  and my small pension but it is very difficult sometimes. Energy costs take up a substantial portion of my income. It’s even harder where I live because we are unable to get mainstream gas and have to rely on oil central heating which is extremely expensive.

Any kind of social life is extremely difficult, holidays are a luxury and disposable income is now virtually non-existent.

What would help

It’s not fair that disabled people who need more energy and who might be on lower incomes  have to meet these extra costs themselves.  There should be more support and awareness. I haven’t received any form of financial help with my energy costs.

Benefits like PIP are there to supposedly fill the gap but it is insufficient to really make a difference. I would like to see a different energy tariff applied if there is a disabled person within the home, much the same as the council tax rebate we are eligible for.

That would make a big difference to my quality of life.

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We also have information about support with your fuel bills

“I’m 22 and financially screwed” – help us tackle the disability price tag

Our new report The disability price tag highlights how disabled people on average face extra costs of £570 a month related to their impairment or condition. Many disabled people have shared their experiences of extra costs with us, and the impact that this has on their lives. It’s an injustice that needs to change. In this blog, Piers, a student in Wales, shares his experience. 

I’m currently studying for a Masters in Physical Oceanography. Being at university, surrounded by my non-disabled peers, has really highlighted the sheer amount of extra money that I have to spend, just because I happen to use a wheelchair.

“I’d say that every month I have an extra cost of about £1300 compared to my non-disabled friends.”

Firstly, my wheelchair itself was incredibly expensive and I had to pay for that myself. The wheelchair offered by the NHS was unsuitable for my needs, so I had to pay over £4,800 for one just to be able to get around and go to lectures just like everyone else.

On top of that, on average, I spend another £300 a month replacing parts and maintaining the chair. Even with this upkeep, it needs to be completely replaced every three or four years.

My housing is also more expensive than my friends – the only accessible student housing available is £110 per week, whereas friends of mine pay as little as £40 a week for similar housing.

Travel costs are increased due to the unreliability of public transport, the nature of hills in North Wales and the location of my lectures. I have to spend about £400 a month on taxis just to get around.

Food costs are also higher. I require easy to prepare food, either pre-chopped or in small quantities. My friends can buy items like pasta in bulk or do a large shop and carry it home. Unfortunately as a wheelchair user, it’s really difficult to manage more than a small basket of items whenever I go shopping. So this can increase my monthly bill compared to my friends by an extra £150.

Related to that, because so many shops aren’t accessible, I have to order a lot of the things I need online and get charged for postage. It may not seem much per item but all of those payments add up over the year.

Man holding a basketball on a court playing wheelchair basket ball

Financially, I’m screwed

My income each year is decreasing. Even with a student loan, Disabled Students’ Allowance and Personal Independence Payment (PIP), I still face a monthly shortfall.

It plays havoc with my social life because I can’t afford to do much, and if I do anything I’m worried about its cost. I have to take almost every freelance opportunity to earn any money I can to try to keep myself afloat, which impacts on my studies.

It’s socially exclusionary as well because my friends stop asking me to go do things with them because they assume I can’t afford things, which means I do even less.

Basically I’m 22 and financially screwed. It’s almost impossible to get a part time student job just because I use a wheelchair. I’ll be leaving university with at least £130,000 debt.

Man on a beach in a wheelchair next to a sign that says 'seating on promenade prohibited'

What needs to change

Firstly, businesses have a huge role to play. I’d love it if the items I needed to live independently weren’t extortionately priced. Companies know that as a disabled person I need the item so they can charge whatever they want. And there should be no delivery charge or a minimum spend for disabled customers.

There should be increases to PIP so it’s in line with the reality of these extra costs and investment into accessible housing so that it isn’t a quality that increases prices of housing astronomically. I also want to see the NHS bespoke wheelchair service restored and free NHS treatment – this would greatly reduce my extra costs.

Related to this, there’s the issue of employment. Extra costs aside, people rely on employment for financial security, yet there are many barriers to employment for disabled people – employers’ attitudes and discrimination being one of them.

Help us tackle the extra costs faced by disabled people. Find out more about extra costs, then share our report on Twitter or Facebook.

You can also read more stories or share your own experiences in our extra costs discussion on the community.