Category Archives: Inside Scope

“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.

Tackling the price tag of disability

Life costs more if you’re disabled.

Our new report, The disability price tag, reveals that disabled people are forced to pay more for everyday essentials.   

From expensive items of equipment or adapted cutlery, to higher energy bills and costly insurance premiums, disabled people face extra costs across all areas of life.

Read more about our research and how we can tackle the price tag of disability. 

The financial penalty of disability

Four years ago we published research into disabled people’s extra costs and began campaigning for change.

Four years on, disabled people still face a substantial financial penalty.

Our latest research finds that disabled people face extra costs of £570 a month related to their impairment or condition. For one in five disabled people, these costs amount to over £1,000 a month.

This is on top of welfare payments such as Personal Independence Payment (PIP) designed to help meet these costs.

This disability price tag leaves disabled people with less money to spend on other things, and unable to afford the same standard of living as non-disabled people.

After housing costs have been met, almost half (49 per cent) of disabled people’s remaining income is spent on disability-related costs.

Even for disabled people in work, average monthly extra costs are £492. And across the country costs vary substantially, from an average of £482 in the East of England to an average of £632 in Scotland.

What are the types of extra costs disabled people face?

Disabled people we talk to tell us that they face extra costs across many areas of their lives. These costs broadly fall into three categories:

  • Paying for specialised goods, like a wheelchair, a hoist or adapted cutlery
  • Having to spend more on everyday things, like heating or items of clothing
  • Paying over the odds for things, like insurance or accessible taxis

Marie is just one of many disabled people faced with extra costs. She uses a specially adapted wheelchair which needs replacing, but this would cost her £9,000. Marie and her husband also recently spent around £4000 on a specially adapted kitchen.

The extra costs of disability mean disabled people are less able to build financial resilience. They make it harder for disabled people to get a job, pay into savings and pensions, and participate fully in society.

What needs to change?

We cannot afford to ignore this problem.

Government, regulators and businesses all need to play a role in tackling the extra costs of disability.

We need action to ensure disabled people have the right support to help with extra costs. PIP helps with some of the additional costs of disability – but too often the PIP assessment fails to capture the extra costs many disabled people face.

We want to see an overhaul of the assessment so that disabled people get the support they need to help meet disability-related costs.

We also need to tackle the drivers of extra costs. We know disabled people are often underserved as consumers, leading to increased costs for essential goods and services like energy and insurance.

Today we are calling on businesses and regulators to set out what they will do to ensure disabled consumers are not paying over the odds.

What will we be doing next 

We will be reporting annually on disabled people’s extra costs to assess any changes over time. We will also be publishing research later on this year into the additional costs faced by families of disabled children.

What are your experiences of #ExtraCosts. Share your experiences in our extra costs discussion on the community.

What do recent announcements on PIP and ESA mean for disabled people?

Our welfare system plays an essential role in supporting disabled people to be more financially secure.

Personal Independence Payment (PIP) for instance helps disabled people to cover some of the additional costs faced as a result of an impairment or condition. For disabled people who are out of work, Employment and Support Allowance (ESA) is important in helping to meet day-to-day costs.

Over the past few months there has been a lot of attention on PIP and ESA. Here we look at what’s been happening and what these changes mean for disabled people.

High Court ruling on PIP

Back in April 2017 the Government made changes to PIP that tightened up access to the payment for many disabled people. We campaigned against these changes, which made a crude distinction between people with physical impairments and mental health problems.

Then, in December 2017, the High Court ruled that some of these changes were discriminatory and should be scrapped.

The Government last month said that it won’t be appealing this decision and that it will be reviewing all decisions relating to PIP awards since the payment  was introduced.  They estimate that up to 220,000 disabled people will receive backdated payments where necessary.

This is a welcome decision, as we know PIP is a lifeline for disabled people. In research we carried out with over 500 recipients of either PIP or DLA, 58 per cent said that even a small reduction in their PIP award would have a significant impact on their ability to live independently.

What does this mean for disabled people?

  • The Government will review all PIP assessment reports to identify individuals who could be eligible for a backdated payment.
  • This includes people who were not eligible for PIP following an assessment.
  • No one will need to go through a repeat assessment.
  • The Government has not yet announced when the review will start, or in what order claims will be reviewed.

PIP and ESA assessments

This week, the Work and Pensions Select Committee published a report following an inquiry in to how PIP and ESA assessments are working for disabled people.

This made recommendations to Government to improve the way that applications and assessments for PIP and ESA are carried out, such as using more accessible forms of communication and offering home assessments.

The Committee also put forward ideas to make sure decisions about disability benefits are fair and transparent. These include recording assessments, letting claimants know which pieces of evidence have been used to make a decision, and allowing individuals to review their report during the assessment.

We welcome this report and want to see Government act quickly to put these measures in place. However, it is clear that both the PIP assessment and Work Capability Assessment (WCA) for ESA are not fit for purpose and need urgent reform.

We want to see the PIP assessment replaced with an assessment that properly identifies the range and level of extra costs disabled people face.

We also want to see the Work Capability Assessment replaced with a new approach which recognises the full range of barriers that prevent disabled people entering and staying in work.

Reforming both of these assessments is crucial in ensuring disabled people are getting the right support – whether with disability-related costs or whilst out of work – and are able to live independently and participate fully in society.

What will we be doing next?

It’s vital our welfare system works for disabled people. Following the Government announcement on PIP and the Work and Pensions Select Committee report, we will be continuing to campaign for reform of both the PIP assessment and the WCA

If you have any concerns about your payments, you could contact Scope’s helpline for free for more information

Any new assessments need to be shaped by disabled people’s experiences. We want to hear about your experiences of applying for PIP and ESA. If you’d like to share your story, please comment below or email stories@scope.org.uk.

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. 

2017: an award-winning year in the life of Scope helpline

In 2017, Scope helpline won the Helplines Partnership ‘Helpline Impact’ award. The award recognises “helplines that have contributed to the sector over the longer term in an amazing way and are an example to others”.

We’ve always been so proud of our helpline service, our dedicated team and the amazing difference this vital work makes to disabled people and their families. But it’s also wonderful to have this external recognition and to win such a prestigious award.

“This is possibly the most helpful advice-line I have ever encountered. Thank you.”

In 2017, the Scope helpline responded to 22,837 requests for information and support by telephone, email and via Scope’s online community and social media networks.

We have also supplied answers to over 1.3 million requests for help and information via our website. This has risen steadily over the years:

“[Scope helpline] was immensely helpful and gave me much greater confidence in dealing with DWP (Department of Work and Pensions) which I was very daunted with. Thank you so much.”

Funding the extra costs of disability

Unsurprisingly, the number one topic you ask about is benefits. We have added extra capacity through the Benefits Training Company answering questions in the online community.

To complement the work of our specialist advisors, our partnership with the charity Turn 2 Us offers an online benefits calculator and grants search tool. Since its launch in July 2015, thousands of you have used this free service to improve your finances, completing 15,000 benefits calculations and over 12,000 grants searches.

In 2017 so far, the calculations have identified over £1.5 million per week in unclaimed benefits. This can make a massive difference to the lives of disabled people and their families, as this customer explains:

“This service exceeded my expectations… The outcome gives…  approx £151 per week instead of £111 per week as originally assessed. I can’t praise the advisors enough.”

New information products

As well as responding to a wide range of enquiries, we have also produced lots of new online information in response to popular demand:

We have taken part in our first Facebook Live event on Universal Credit.

Becoming Disabled offers answers to the most frequently asked questions our helpline receives from people new to disability.

Our newly expanded equipment section in partnership with Which? is complemented by an occupational therapist in our online community.

We have also produced three information videos, which has been viewed nearly 100,000 times since they were launched:

“Just a note to say these films are absolutely excellent. Very clear and accessible. My son who has ASC (Autism Spectrum Condition) is currently undergoing a PIP assessment and I expect to go through the appeal process, so it’s really great to see this kind of resource being made available.”

 

For free, independent and impartial information and support on the issues that matter to disabled people and their families, contact Scope helpline on 0808 800 3333 or helpline@scope.org.uk.

Scope helpline receives no Government support: £9 can help pay for a call to the helpline.

Please support us if you can.

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.

Why the Chancellor’s comments on disabled people and productivity are damaging and inaccurate

Yesterday the Chancellor made comments which suggested that a higher number of disabled people in the workforce has had a part to play in the ‘sluggish productivity in Britain’s economy’.

To say we are disappointed in these comments would be a huge understatement. Even more so, as they come a week after the Government announced a new plan to support more disabled people to enter and stay in work.

We have been campaigning hard over the last four years to tackle the barriers disabled people face both in and out of work. And pushing hard to tackle outdated negative attitudes towards disabled people, whether in the workplace or in wider society. It’s vital that Government and employers recognise disabled people’s potential and the value they bring to the workplace.

Statistically and historically the correlation between increases in productivity and disability employment have gone hand-in-hand. It has never been the case that increasing the number of disabled people in work has had a harmful effect on productivity levels.

Graph showing correlation between disabled employees and productivity
Graph: Productivity against proportion of employees who are disabled

Our analysis of the ONS (Office of National Statistics) National Accounts and Labour Force Survey shows the rate of productivity in the UK has been unaffected by an increase of the proportion of disabled people in work. For instance, between 1998 and 2007 productivity increased by 22 percent, while the proportion of the workforce who are disabled increased from 7.6 percent to 10.4 percent.

It is therefore unacceptable that the Chancellor decided to attribute productivity challenges to disabled people so publicly in this way.

Just last week the Prime Minister committed to getting a million more disabled people into work, a move we welcome. And the Government’s own Industrial Strategy published last month, highlights that businesses with inclusive workplaces bring improved productivity.

Shifting attitudes doesn’t happen overnight. It can take years to shift perceptions. Yet it is this hard work that is essential for social change, and essential if we are to live in a country where disabled people can have everyday equality. However, it can take seconds to reinforce lazy, outdated and harmful stereotypes and undo all this hard work.

We have written to the Prime Minister to clarify her position and have called on the Chancellor to withdraw his comments.

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.