All posts by Hayley Tomkinson

I'm in the Stories team at Scope.

Why BBC Class Act is an exciting step forward for disabled actors

BBC Class Act is a nationwide development programme which aims to support and raise the profile of disabled actors. Last week, we were lucky enough to attend the launch party and talk to some of the talented people involved.

On Monday, we shared a blog about Silent Witness and how amazing it is to see better representation of disability on screens, as well as a variety of exciting roles for disabled actors. We want to see more of this, which is why we’re fully behind the new BBC Class Act programme.

Last August, the BBC launched a nationwide search for talented disabled actors. From over 350 audition tapes, 32 people were were selected to attend an intensive three day skills workshop led by BBC directors. The actors were given lessons in everything from audition and camera techniques to help with their show reels, with the aim of improving their chances of being cast in more roles. At the launch, Piers Wenger from the BBC said:

“I hope the talent you see encourages you to consider disabled talent for a manner of roles. It’s crucial that all of us in the industry work collectively to nurture and include disabled actors so that we can see increased representation on our screens.”

Carly Jones, one of the talented actors who took part, tells us why this is so important to her

Carly sat on the sofa with a union jack pillow

Before this, I’d accepted that acting wasn’t my destiny

Before I became an Autism advocate, I was an actor. Autistic people, like me, have what many professionals call “obsessions” and what the kindest professionals call “special interests”.  Mine was definitely acting.

Aged four, I would be gently placed behind the sofa every time I stood in front of my parents’ TV, wanting to be the performer. As soon as I could read, Teletext became my very first auto cue!

This led to being Mary in the school nativity, attending Ravenscourt Theatre school as a teen and eventually, becoming a frustrated actress in my 20s, snatching occasional talking parts in a sea of supporting roles.

Chasing this dream wasn’t compatible with a busy life as a divorced mother of three daughters, two of whom are also Autistic.  So I decided to put my “special interest” into a box.

It was hard. I always felt more comfortable on stage than I did in everyday situations because I knew what I was meant to say and was prepared for the reply. But I accepted that acting wasn’t my destiny and moved on.

Carly looking to the side, against a dark background
Carly had put aside her dream of acting, until she took part in BBC Class Act

When I saw the BBC Class Act advert, my instant thought was “Ah I wish this had been around when I was younger” and I got on with my routine, but kind friends kept nudging me and eventually I thought “Blow it, I’ll audition!”

When I had a quiet hour at home alone, I taped my audition and nervously posted it “unlisted” on my YouTube channel. I planned to remove it later and never think about it again, but by some twist of fate, I was chosen!

Disabled actress Carly wearing sunglasses and a top that says autistic girl power

The course felt like a celebration of diversity

On the first day, I was pleasantly surprised by how different we all were. There were actors with all sorts of different impairments. Also a large percentage of BBC staff and organisers were disabled – something which I naively didn’t expect.

We had three action packed days. We auditioned, did camera work, filmed our scenes and showcased our work to our directors. Surprisingly it was not half as terrifying as I expected! The subconscious worry that this was just a box ticking exercise was quashed – this event really showcased a genuine desire for change and a celebration of diversity.

Truly it was easy to forget that we were a group of ‘disabled actors’. The actors there were extremely talented and it was clear that this initiative was set up to support talented actors, who also happen to be disabled. Rather than “let’s get some disabled people and help them act”.

I am so grateful for the three days of total support, encouragement and confidence the BBC gave me. I’m excited to see where this progresses, not only for my own personal goals, but for disability representation in the media as a whole! And maybe, just maybe, my Autistic “special interest” happens to also be a talent.

If you’re a disabled actor and you’d like to share your experiences of working, you can get in touch with the stories team.

Why tonight’s Silent Witness story is just what the industry needs

Disabled people and their stories rarely appear on TV or in films. Then, when they do, non-disabled actors are often cast to play the roles. That’s why we’re so excited about the latest Silent Witness story which will be broadcast on BBC One tonight and tomorrow.

The story – One Day – is told across two episodes and tells the story of Toby and Serena who are both disabled. They’re played by actor Toby Sams-Friedman and Rosie Jones, a brilliant comedian in her first acting role.

The story is gripping and emotional and while it’s billed as a story about hate crime, it also shines a light on a variety of issues that disabled people face, not to mention the seeming lack of urgency when it comes to addressing those issues. It also features an incredible performance from Liz Carr, a regular on the show.

Our helpline team were consulted on the script and on Tuesday, we were lucky enough to attend a screening of the episodes at BAFTA. In the Question and Answers that followed, we heard from Tim Prager who wrote the episode and actor Liz Carr. Afterwards we also chatted to Rosie Jones, who plays Serena in the episodes. Here’s what they had to say.

Rosie Jones:

“I wanted to do it justice for all the disabled people in that situation”

I come from quite a higgledy-piggledy background because I actually started behind the camera working in comedy and entertainment. Then I decided to do stand-up comedy, and along with that comes acting. I went for this role and somehow with no acting experience, I got it! So yeah, it’s my first acting job but I really enjoyed it.

The story is incredible, it’s hard going and it tackled a lot of tough subjects. I was quite worried that I wouldn’t be able to do it justice. But actually, I wanted to do it justice for all the disabled people in that situation. It’s incredibly important to tell this story, we need to make people more aware. And it’s so important that disabled actors are playing the roles. You can get the best actors but they don’t know what it’s like to be disabled. I do and hopefully I bring something to the role.

A women stands in a doorway looking worried
Rosie Jones, as Serena, in the first episode of One Day

Tim Prager, writer: On hiring disabled actors

“Just do it”.

I’ve known Toby since he was a little boy, I’ve watched him grow up, so it was easy for me to write that character. I have a son with cerebral palsy so it was easy for me to write Serena. What I was hoping to do with it, is to demonstrate that there is a place for all of us. That’s it.

There needs to be a will to tell stories about all sorts of people. Liz has been on the show for 6 years. The critical issue for me was that she was in it and she was a regular in it. There will always be a disabled character, whether [the story] is about disability or not. We’ll just put them in it because they can do other jobs.

[As a writer already in the industry], I’ve laid down the gauntlet and said I’ll work with disabled writers and bring them up to a technical skill level that makes them available to work on mainstream shows. And that’s what needs to happen, we need to get to a place where [all] people write all the shows that people watch.

It comes down to people saying, okay enough, let’s do it, let’s do it now.

Liz Carr, who plays Clarissa in the series:

“You’ve got the right people telling the story for a change”

It was so important [to do this story] because I don’t think that, other than on something like Panorama, I don’t know that we’ve seen some of these things on TV before.

These episodes are expressed as being about disability hate crime and really, they’re about the value we place on another human being.

Tim, comes at it from a place of experience as do we, as disabled actors. When we say ‘we should have better representation on TV’ it gets a bit boring – these episodes show why. And you’ve got the right people telling the story for a change.

There are lots of disabled people, people who championed this kind of episode and it’s a celebration. I guess the issue is, there’s so much to be done and we want it done now, I’m so impatient. Disabled actors have got to get more experience so we get there.

The performances across the board in this episode are stunning. The more we do it, the more people who work with us realise that this isn’t so bad.

Silent Witness One Day will be on BBC One at 9pm tonight – Monday 29 January – and tomorrow. 

Whatever the reason you’re having a ‘blue’ day, I’ve learned that talking is one of the best things you can do

Today, 15 January, is ‘blue Monday’ – the so-called ‘most depressing day of the year’.  For Josh, feeling ‘blue’ isn’t restricted to one day a year. In this blog, he writes about accepting his mental health struggles and why talking to people is one of the best things you can do.

For me, a lot of days feel like ‘blue Monday’. I have anxiety, depression and borderline personality disorder. I haven’t been in a good place the past few months. My anxiety sometimes makes it difficult to be happy. Over the years I’ve found good coping strategies. Talking to someone was one of the best things I ever did and now I encourage others to do the same.

I first started thinking about mental health at the age of thirteen. In the beginning there was no one to help me because I was just seen as a ‘problem child’. When I told teachers that I was struggling, they didn’t take me seriously. Once, I was in an exam and I told the teacher that I was feeling sick due to anxiety. They told me to “grow up and stop being pathetic”. That sent me over the edge. I felt alone for the first time. I failed the exam and I ended up in the hospital for an emergency appointment.

A turning point

That was a turning point for me. It happened in front of 180 people at school, so not only did it impact me, but it also impacted a lot of other young people who could have been going through similar things.

After that incident, everybody started treating me a bit differently and understanding me more. I realised that I was never going to get better if I didn’t talk to people about it. That was when I really started coming to terms with myself, my own needs and my own mental health.

Smiiffy, a young disabled man, smiles by a microphone

Destigmatising mental health

I’m very open on social media. I talk about mental health in a way that destigmatises it. I make people laugh, at the same time as showing that it’s a serious thing.

I wish people were less afraid of honesty. Even in music, a lot of things about mental health are censored. YouTube won’t promote my music because I’ve mentioned that I’ve felt suicidal or depressed, and Facebook won’t promote it. It really frustrates me. Especially when you see these platforms marketing things that you don’t need. And yet I can’t promote something with a positive message.

I often feel isolated. Sometimes I just prefer to be alone. I constantly feel alone in a crowd, even if I’m surrounded by good friends. I feel like I don’t fit in, which is really difficult sometimes. I posted that on social media. I wanted to start accepting my mental health and raising awareness, letting people know that it’s okay to talk about it and that there’s help out there.

Josh sits alone in a busy pub

Talking to people can help

In most families, there’s at least one person who will understand. The same goes for friends. I try to surround myself with good people. It might be difficult at first, but I’ve learned that talking will help in the long run. People will try to find a way to help you through hard times.

If you’re still not ready or not sure if people will understand, talking on social media can help things improve. You can be anonymous and sometimes that makes it easier to talk about the fact that you’re struggling, because you know that nobody will know who you are. It can also help you find like-minded people.

Letting people know that they’re not alone, and that there are other people there who are wanting to listen to them is incredible. I know from my own experience that it can be hard at first to talk to people around you, so I always say that people can talk to me. I’m very open on social media and lots of people do reach out.

Over the years, thousands of people have messaged me and said positive things and told me that I’ve helped them open up about their own mental health, which is incredible. For people who struggle to talk or feel like they’re not going to be heard, I want you to know that you will be heard, and that speaking out about what you’re going through can really help.

If you’re having a difficult time with your mental health, you can speak to your GP or contact organisations like Mind for support.

If you’d like to share your own experiences, get in touch with the stories team.

Connect with Josh on Twitter: @JoshSmiiffy 

What the past year has taught me about kindness

The start of a new year is often a time to reflect. When Pippa acquired a long-term condition at university she felt really isolated, so she set up Spoonie Survival Kits to reach out to other people with chronic illnesses. It has been a huge success and in this blog, she reflects on how the incredible kindness of others has changed her life.

If there’s one thing the past year has taught me, it’s that even the smallest acts of kindness can make the biggest difference.

I became chronically ill halfway through my time at university and it was a bizarre experience. Being surrounded by mostly non-disabled peers had me questioning not only what my future would hold, but my self-worth too.

While I tried to adapt, I couldn’t help but notice what a lack of support there was for people like me. There are hundreds of wonderful programmes and schemes for young people in hospitals, but what about the thousands of people at home, who are too unwell to leave the house?

Living with a chronic illness can be incredibly lonely. You quickly realise just how significant the small things can be.  Even on the more difficult days, a small gesture can remind you that you can do this. With this in mind, I set up ‘Spoonie Survival Kits’.

I wanted people to know they weren’t alone

‘Spoonie’ is the slang term for someone living with chronic illness. The kits contain treats and surprises aimed at brightening someone’s day and reminding them that they are not alone, that they haven’t been forgotten.

The kits are sold online and half of the sales money is donated to charities, with the other half being put back into sustaining and growing the enterprise. In the last two years alone, we’ve sent over 700 kits to recipients all over the world, and raised over £3,500 for various charities. And the demand just keeps growing!

Pippa holding one of the gift bags
Pippa holding one of the ‘little bags of happiness’

Creating a community of kindness

Spoonie Survival Kits has taught me a humbling amount about the value of selflessness and generosity too. Since the very beginning of the project, countless people, many of whom are severely unwell themselves, have come forward to ask what they can do to help.

If it wasn’t for the support and encouragement that I’ve received, I’m not sure if Spoonie Survival Kits would be what it is now. The kindness of others is quite possibly the best source of motivation a person could wish for, and something that I will never take for granted.

We’ve found that the people who receive the kits often want to support our work, creating a cycle of ‘paying it forward’ – when the kindness shown toward you, makes you want to show kindness towards somebody else.

A circle of hands wearing bracelets around the Spoonie Survival Kits logo

What keeps me going

Spoonie Survival Kits has been a game-changer for me personally. It  gave me back my sense of purpose at a time when my physical health made me feel pretty useless.

The most rewarding aspect of the project in my eyes, has been developing accessible and remote volunteering opportunities, inclusive of chronically ill people. Everybody who works on the project has a long-term condition, and we pride ourselves on offering volunteer agreements specifically tailored around people’s individual circumstances. Many of the items within our kits are handmade by talented crafters living with chronic illnesses.

Having such a talented and dedicated team of volunteers is just one of the reasons why I love being involved with Spoonie Survival Kits, and our kit recipients often benefit all the more from knowing that those behind the enterprise are in similar positions to themselves.

When I’m having a tough symptom day and feeling sorry for myself (and believe me, there are plenty of those days), it sometimes takes just a simple nudge to encourage me to keep going. My new year’s resolution is to continue ‘paying it forward’, and I wholeheartedly encourage you to do the same!

 Find out more about Spoonie Survival Kits and support the project. 

Do you have a story you’d like to share? Get in touch with the stories team.

Why I’m determined to make the world a better place for my daughter

The start of 2017 was a dark time for Christie. Her daughter Elise had just been diagnosed with cerebral palsy and without any support or information, Christie felt really alone. A year later, with a new positive outlook, she is a force for change. In 2018 she’s determined to keep making the world a better place for her daughter. In this blog, she shares their journey.

My daughter Elise was born prematurely and it was the worst time of my life. The doctors didn’t think she was going to make it but she did. I remember the first time she opened her eyes. After a month of being in hospital, we got to take her home and I was so happy.

The doctors said there hadn’t been any brain injury but she wasn’t developing as expected. So, after lots of meetings and nine months of waiting, we finally got a diagnosis of cerebral palsy, just before Christmas 2016.

I felt really alone

It was really overwhelming. I didn’t have any experience of disability and I thought it meant her life was over before it had even begun. I thought she’d have no future. I tried to be cheerful for her but my heart was breaking.

I didn’t want people to come over because I didn’t want questions. The first time I took her out in her wheelchair, I cried. I felt like everybody was staring at her. I had days where I just wanted to give up and lock us both away from the world.

That’s when I found out about Scope.

Christie holding up Elise in front of their Christmas tree

I’d been missing all the positives

I wanted to do everything I could for Elise so I called Scope’s helpline because I didn’t know where to start. They gave me so much information. I found out about what was available to us and the different equipment we could use. All these things have helped make life easier. But most importantly, Scope gave me so much hope.

They completely changed my perception of disability. It’s been a whole new life to get used to and I was just focusing on the negatives. Scope helped me to focus on the positives. I’d been missing them all.

You’ve just got to change the goal posts. Elise waving was a massive thing for us and, with her physio, she’s really building her strength up. She’s just got her Peppa Pig wheelchair which she loves and it’s given her so much independence – maybe too much as I recently found out in Asda when she kept wheeling off!

Christie on the sofa with Elise on her lap

I’m determined to change the world for Elise

I still worry every day about Elise’s future. I worry about people’s attitudes, I worry that she’ll want to join in with things but she won’t be able to. The world puts up so many barriers and you don’t realise it until you’re in that world. And it is a different world.

I’ve been sharing our story this past year and I want to keep going.  I feel less alone knowing that there is a community out there and people who care, people who’ve been in this situation.

We’re in a much better place this Christmas but life is still much harder than it needs to be. There should be more support but there’s not and accessibility is a big problem. Just because you have this diagnosis, doesn’t mean you don’t deserve a chance.

This year I want to keep changing attitudes about disability, I want to make things more accessible, I want to give Elise everything she needs – I’m determined that nothing’s going to stop her!

I started a Facebook page called Elise Smashed It. I want everyone to see what an amazing little girl Elise is. I hope it raises awareness and changes perceptions about disability. I want to help other parents too and show them that there is hope. It might not be the life you were expecting, but it’s not the end – it’s just the start of a different life and you’re not alone.

These are my goals and that’s what I’m going to focus on this year. I hope you’ll join me.

Too often, disabled people and their families struggle to access the support and information they need. Attitudes towards disability can be a problem too.

Christie shares her story because she wants to change that. Please help by getting involved with our What I Need To Say campaign and following Christie and Elise’s journey on their page Elise Smashed It. 

I’m a disabled person and I’ve contributed to the economy for 43 years – the Chancellor’s comments feel personal

Graham is Scope’s Engagement and Participation Manager. As a disabled person himself, with three disabled children, he had a strong reaction to Philip Hammond’s comments about productivity and disabled people. In this blog, “after a full day to calm down and sleep on it”, he responds and shares some other reactions.

It’s not based on any evidence

Firstly, as Scope colleagues and many others have said on social media, this statement hugely undermines the Government’s commitment to getting one million disabled people into work.

This wasn’t an off-the-cuff remark by Mr Hammond during an after-dinner speech – it was made in a formal Parliamentary committee meeting and broadcast to the world. So, apart from the slap in the face to working disabled people, he is contradicting Government policy.

His statement is not based on any evidence that anyone knows of. I’m extremely pleased that Scope has called out both the Chancellor and the Prime Minister on this slight.

I’ve contributed to the UK economy for over 43 years

Secondly, it feels quite personal. I’ve had my impairment since I was  a child and have worked continuously (apart from study breaks) since age 17 when I joined a press agency in London as a trainee journalist.

I’ve since worked as mental health support worker, probation officer, supported housing officer, bookseller, policy wonk and project manager. During this time I haven’t avoided paying my income tax and have contributed to the UK’s economy for over 43 years. So being labelled as a problem for  productivity would be a joke if it wasn’t so serious.

I worry for the next generation of disabled people, including my son

Thirdly, I worry for the next generation of disabled people. My youngest son is leaving university in a year or so, and my daughter has worked and has paid taxes for several years.

Despite my professional and personal campaigning on the inclusion of disabled people for 20 years or more, it is very clear we have a whole lot more to do if senior politicians still see us as drains on the economy and uninvestable. We need to be seen as active, empowered citizens.

And in addition to this novel stance – being seen as non-productive – the framing of disabled people as inherently “vulnerable” is another barrier that needs dismantling. I’m confident that Scope will continue to challenge received and dated ideas that diminish disabled people, and really promote everyday equality in all its senses.

It’s not just me who’s outraged, here’s what other people have told Scope

Laura via email:Laura walking with her guide dog

“I am disgusted that a man in his position could say such a thing. We have enough issues to face daily without comments like that.

Every day I make a contribution to society along with so many others. These were very hurtful comments to read as I was getting up, getting ready and travelling to work!

I am pleased to see disabled people and organisations have pulled together today.”

 

Liam via Twitter:

“I just felt disappointed and confused, to be honest.Liam wearing radio headset, smiling at the camera

Aside from being derogatory, it was also a bizarre statement to make when the disability employment gap remains stagnant.”

 

 

Shona via Twitter:

“It’s just reinforcing what we already know, this government thinks disabled people are a problem.Shona in her wheelchair in front of a fence and a park

What is even scarier is the government knows they can get away with saying things like that because they’ve created a society that sees disabled people as lesser.”

 

If you want to read more reactions to the Chancellor’s damaging and inaccurate comments, check out Scope’s Twitter moment. 

Scope storytellers also shared their views in the media:

Scope has written to the Prime Minister asking her to clarify her position and called on the Chancellor to withdraw his comments. We’ve also explained why his comments are damaging and inaccurate.

What are your thoughts on the Chancellor’s comments. Share what you think on Twitter or Facebook using the #EverydayEquality.

Meet the campaigners and storytellers making equality for disabled people a reality

Today is the International Day of Persons with Disabilities (IDPD). The theme this year is “Transformation towards a sustainable and resilient society for all” and the UN agenda pledges to “leave no one behind”. But far too often, disabled people are left behind and it doesn’t feel like our society really is working for all.

Scope’s new strategy is focused on everyday equality but we can’t do it alone – it requires a collective effort of everyone working together. On IDPD, we’re highlighting some of the amazing campaigners and storytellers we’ve been working with this year.

Shani is tackling extra costs

From expensive equipment to higher energy bills, disabled people and their families pay more for everyday essentials. Support to meet these costs, such as Personal Independent Payments, often falls short. When you face so many extra costs, it can stop you from being able to go out and do things like everyone else.

Shani smiling, stood on a cobbled street

That’s why Shani launched the Diversability Card – a discount card for disabled people. As well as helping to alleviate some of the financial pressure, it also aims to be a catalyst for change by raising awareness of the value of disabled consumers. Find out more about extra costs and the Diversability Card on the website.

Will is campaigning to make public places accessible

Last year, Will made a short film to highlight the poor disabled access found up and down our high streets. As a wheelchair user,  he wanted to demonstrate how frustrating this is from his everyday perspective. He also wanted to draw attention to the fact that businesses are losing multiple paying customers.

The film went viral and thousands of people signed his petition. Alongside his job as a games developer, Will has continued campaign on accessibility – attending events in Parliament and speaking on TV. Read more about Will’s campaigning in this blog.

Christie is raising awareness to change negative attitudes

Christie’s daughter Elise is a happy, smiley two year old girl who has cerebral palsy. Elise has a bright future ahead of her because Christie is determined to overcome any barriers they face. Barriers like negative attitudes, expensive equipment and inaccessible playgrounds.

Christie is a Scope storyteller and local campaigner and she also shares their journey through her page ‘Elise Smashed It’. She hopes that by raising awareness she will educate people, create change and help other parents and children with cerebral palsy.  Find out more about Christie and Elise’s achievements on their Facebook page.

Dan and Emily are tackling the lack of disabled characters

When Dan’s daughter Emily asked why there weren’t any wheelchair users on TV, he knew that something had to change. A wheelchair user herself, Emily always wanted to find characters and people that she could relate to, but they were so hard to find.

Dan, an author holding up his comic book, poses with his daughter Emily who uses a wheelchair

Together, they created The Department of Ability comic book, featuring a cast of superheroes whose impairments are their greatest superpower – and Emily has a staring role! Read more about Dan and Emily’s adventures in their blog.

Carly is making sure autistic women and girls are safe and supported

Carly is an Autism advocate and speaker. She wasn’t diagnosed with autism until she was 32, after years without support, feeling “like a second class normal person” and being told that “autism only happens to boys”. When two of her daughters were diagnosed, she noticed a huge lack of understanding when it came to autism and girls, and she’s been working to change that ever since.

Carly wearing sunglasses and a top that says autistic girl power

From her own experiences, Carly knows that there are serious consequences to not being diagnosed and she has dedicated her life to making sure women and girls are protected and supported.

As well as speaking and networking, Carly has been to the UN to ensure the rights of autistic women and girls are protected and she created a free online safeguarding course. She’s also passionate about changing attitudes towards autism and runs  events for autistic children, where they can invite anyone they like. Find out more about Carly’s story on her website. You can also buy Carly’s book about autism and girls.

If you want to get involved in campaigns or storytelling, get in touch with the stories team. You can also find out more about our current campaigns on our website.

I had a good life but cuts to social care have left me completely isolated

Angela spent years looking for the right kind of social care and eventually she found it. For a while she enjoyed having complete control over her life and led a very active one at that. However, in the past few years, drastic changes to her social care have left her isolated. In support of our Christmas campaign, Angela is sharing her story.

My mum found out that I had cerebral palsy when I was two and a half. She took me all over the place to find answers and she was constantly fobbed off with “Oh your baby is just lazy”. When she did get the diagnosis they said, “She’ll never do anything, she’ll never speak”. Which wasn’t true and sadly it still happens to parents today.

But you can only thrive if you’re given the right support, and that’s often the biggest barrier to living a full life if you’re disabled. Something I know all too well.

Angela as a child on a blanket cuddling a big dog
Angela as a child

I was always searching for something different

I grew up in residential schools and when I became an adult the only option – other than living with my mother – was to live in a residential home. I hated the regimentation. There was no independence and hardly any choice. You had to get up at a certain time, do this, do that, you only had three choices for your meals.

We were very isolated. The nearest town was Colchester and that was 10 miles away. There were no opportunities, nowhere to go. There was a factory on the grounds so we worked there. I had my 21st birthday there, among all these people that I didn’t know. It was very lonely. I was always searching for something different but I didn’t know what it was.

Then, one day I came across an article about a place that had the vision that you might be disabled but it doesn’t mean you can’t own your life and live your life. This was the first time I’d heard that kind of attitude.

I managed to get a place there but it was scary to begin with. By this time, I was in my mid-30s and I was so used to people deciding things for me. Suddenly I had a lot of say in how I lived my life. I could choose when I wanted a bath, when I wanted to go to the toilet, I could go out quite a lot. It was life-changing.

Finally living as an equal

After a few years I took the next step and decided that I wanted to live in my own place. It took a while to sort it out but soon I was moving into my own flat for the first time. I had two support workers who lived in a flat upstairs and were available to support me 24-hours a day. Finally, I was living as an equal.

My support workers relieved me of my ‘disability’ by doing things that I physically couldn’t do and I was in control of what I did and when I did it. I could invite friends round and they didn’t have to get involved with anything – they just saw me as me and not a disabled person. But sadly, this new life didn’t last.

Angela in front of hills and a castle
Angela on holiday, something she used to be able to do with friends

Cuts to social care have left me completely isolated

I remember hearing there would be cuts and there were cuts. Over the last few years my social care support has changed dramatically and with it my life has changed for the worse.

The carers that come now only take me to use the toilet, prepare simple meals and do my personal care. I get half an hour in the morning, three quarters of an hour for lunch, half an hour in the middle of the afternoon, three quarters of an hour in the evening and half an hour around bedtime. It’s the same every day. Then I get 2 hours a week to do a shop and 2 hours for housework. It has completely taken away my independence and left me very isolated.

I can’t live a life now. I’ve lost many friendships. I can’t do most of the community activities I used to do. I can’t just get up and do things, be spontaneous. I have to think about the consequences of everything I do. I used to do a lot of campaigning but I can’t do that anymore. I virtually have no social life.

It’s a very lonely way to live. The social care system urgently needs to change. I have a right to live in my community as an equal.

Too often disabled people struggle to access the right emotional support, advice and information. As a result they feel like no one truly understands, leaving them disconnected and isolated from those around them. 

Please help us this Christmas by getting involved with our What I Need To Say campaign. Share the message, tell us your stories, and donate to Scope so we can be there for people who have nowhere else to turn.

Millions of disabled people feel lonely, including me – let’s change this

Shani is an events manager, disability campaigner and entrepreneur from Walsall. She features in Scope’s new What I Need To Say campaign which highlights the isolation that millions of disabled people face. In this blog, Shani shares her own experiences.

At certain times in our lives, we are all likely to experience loneliness. We often talk about loneliness in elderly people but, as Scope’s new research shows, loneliness affects so many disabled people.

This can be down to poor access to services, inaccessible transport and venues, and financial challenges. When you face so many extra costs related to disability, it can stop you from being able to go out and do things like everyone else. That’s why I launched the Diversability Card – a discount card for disabled people.

Social attitudes are also a significant barrier. Many struggle to see the person beyond the impairment or condition and act awkwardly. One in four people have admitted to avoiding conversations with disabled people because they worry about causing offence or don’t know what to say. This really astonished me. Personally, I feel sorry for the non-disabled UK population who are missing out on interacting with 13 million of us fabulous people!

With so many barriers to contend with, imagine being a disabled person, experiencing the same life transitions as everyone else, but not being able to participate in the same way. No wonder disabled people feel lonely.

My own experiences of loneliness

Being part of the ‘What I Need To Say campaign’ by Scope made me really reflect about the times I have experienced loneliness or isolation, which has drifted in and out of my life over different periods.

As a young child, I attended a special needs school which made keeping in touch with friends very difficult as we lived miles away from each other. It also meant that I was sent to a separate school that my siblings, cousins, friends and neighbours attended. Whilst it was the best place for me because of the care I needed for my condition, it was hard to maintain friendships and any sort of social life.

Over the course of my childhood, I spent a lot of time in hospital with broken legs due to my condition Osteogenesis Imperfecta (brittle bones). I would be in hospital for a minimum of three months at a time, missing school and home whilst only having adults to really talk to. I was very lucky that I always had lots of family coming to see me during the visiting time, but this is such a short amount of time in what used to seem very long days as a child.

I’ve also experienced loneliness as an adult, being excluded from social situations or activities due to my condition or people making assumptions about what I am able to do, or not. It’s really frustrating, especially as I’m a very independent person who will always find an alternative way of doing things.

Shani smiling, stood on a cobbled street

Ending loneliness

I feel that increasing the awareness of different conditions and dispelling misconceptions about disability are major steps in combatting the ‘silent epidemic’ of loneliness and isolation.

Also, if you are a friend or family member of a person with an impairment or condition, take a moment to consider how they might be feeling, especially around this festive time of year. It can be as easy as making a quick phone call or popping in for a cup of tea to brighten someone’s day.

Too often disabled people struggle to access the right emotional support, advice and information. As a result they feel like no one truly understands, leaving them disconnected and isolated from those around them. This is particularly heart-breaking at Christmas.

Please help us this Christmas by getting involved with our What I Need To Say campaign. Share the message, tell us your stories, and donate to Scope so we can be there for people who have nowhere else to turn.

I thought I was the only one feeling like this, then the responses started coming in

Ellie felt isolated as a teenager so she set up CP Teens UK to connect other young people and show them that they’re not alone. Sport has transformed her life too. After spending years being excluded from P.E. lessons at school, she’s now competing at a professional level.

In this blog, Ellie shares her story and tells us why she’s dedicated to making sure that no-one else feels alone, like she did.

I was diagnosed with cerebral palsy just before my second birthday and my parents were told I’d never talk, walk, or function in a ‘normal’ world. Fast forward 22 years, and I do all three and even more! I went through mainstream education, achieving GCSE’s and A-Levels, and most recently a BSc, even though my parents were once told this was ‘impossible’.

Although I coped well academically, school began to get a bit difficult for me when I was around 13 or 14. That’s the age when kids start to form cliques and reject anyone who is a bit different. I felt lonely a lot of the time.

And it wasn’t just the students; teachers would actively discourage me from joining in with things. When we had a P.E. class the teachers would look at me and say: “Shall we go inside and do some homework Ellie?”

At the time, I went along with it because I was so self-conscious. My cerebral palsy is very obvious when I move and I wanted to stay inside and hide away.

Ellie, a young disabled woman, smiling at the camera
Ellie felt less alone after she set up CP Teens UK

I wondered if it was just me feeling like this

I realised that there was nothing out there for people like me, both socially and in terms of going out there and getting opportunities. I didn’t have the confidence to go out and get a job, and my friends all went off to university and forgot about me.

I felt like I was the only person on the planet feeling like this so I set up a Twitter account in the name of ‘CP Teens UK’ thinking nothing would really come of it. Then, the next day I woke up to loads of followers including Francesca Martinez and Sophie Christensen!

The response was amazing. People were getting in touch saying, “I feel the same way, it’s so nice to find someone else.” I got so many emails like that I couldn’t believe it. It made me feel less alone. I’ve met some really cool people.

Since then I’ve set up a Facebook page and a website and it just grew and grew and CP Teens UK became a fully registered charity in March this year.

Then sport opened up a whole new world for me too

Because I was discouraged at school, I avoided sport throughout my life. I wasn’t even aware that there were opportunities for disabled people in sport. Then, the Paralympics changed everything. Seeing disabled athletes at the top of their game made me realise what was possible.

I saw something on Twitter about a Paralympics GB Taster Day and I went along to see what it was like. It was an incredible day with an amazing atmosphere. When it came to sports, I’d always heard: “No, you can’t do that, it’s not safe” but now it was all: “Come on and have a go.”

Sport transformed my life and now I regularly train and compete internationally. I have just been selected for the 2018 World Cerebral Palsy Games in Barcelona. Out there on the track, being watched by hundreds of people, I am in complete control. As a disabled person, I don’t feel that way very often. Being cheered on by so many people who are all on your side is a powerful thing.

Ellie Simpson races an adapted bike on a race track
Ellie competing in RaceRunning

Hopes for the future

It’s important to let people know that they’re not alone. I set up CP Teens because I wanted to connect other people who, like me, just felt a little bit lost and to tell them that they’re not the only people out there who feel isolated.

Now I want to connect people through sport too. I’ve just finished a degree in Sports Coaching and I organise events through CP Teens. Sport is something that brings people together and I don’t want anyone else to be left out like I was.

Too often disabled people struggle to access the right emotional support, advice and information. As a result they feel like no one truly understands, leaving them disconnected and isolated from those around them. This is particularly heart-breaking at Christmas.

Please help us this Christmas by getting involved with our What I Need To Say campaign. Share the message, tell us your stories, and donate to Scope so we can be there for people who have nowhere else to turn.