Category Archives: Campaigns

“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.

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.

Tackling the additional energy costs faced by disabled people

Winter brings two certainties – lower temperatures and higher energy costs. This is particularly challenging for disabled people, who often consume more energy because of their impairment or condition.

In recent weeks, Ofgem – the energy regulator – and the Government have both announced short-term proposals to help tackle high energy costs. Whilst these are welcome, Scope is calling for more targeted reforms to support disabled people in the energy market.

Below we look at these changes in more detail and what they could mean for disabled people.

Disabled people’s experiences as energy consumers

Disabled people face a range of disability-related costs, amounting to an average of £550 a month, making it harder for disabled people to get into work, access education and training opportunities and participate in society fully.

Energy represents a significant type of extra cost for disabled people. In an independent inquiry into extra costs, The Extra Costs Commission, energy was the third most cited area of additional cost by disabled people.

Households with a disabled person spend on average over £3,000 a year on energy, compared to the £1,345 an average UK household spends. It is no surprise then that more than a quarter (29 per cent) of disabled people have struggled to pay their energy bills in the past year.

What changes have been announced?

In October, Ofgem announced a proposal to extend the Vulnerable Customer Safeguard Tariff. Currently, this limits the amount that  customers who are on a prepayment meter will pay for their energy bills. The extension would cover an additional one million customers who receive the Warm Homes Discount, which is a one-off discount for certain customers on their energy bills. This change would take effect from February 2018.

Ofgem has acknowledged that this approach will not support all groups with high energy costs, including many disabled people. It is considering what further steps it can take to support a wider pool of customers.

Alongside this, the Government has published its Draft Domestic Gas and Electricity (Tariff Cap) Bill. This would put an absolute cap on certain energy tariffs, including standard variable tariffs and default tariffs, which have variable prices that go up and down with the market.

The cap would be set by Ofgem and would be temporary in nature. It would last until the end of 2020, although it may be extended for a year on up to three occasions, depending on whether the market becomes more competitive.

The Business, Energy and Industrial Strategy Select Committee has been reviewing the Bill before it is introduced in Parliament. We have provided both written and oral evidence to the Committee, and we want to ensure that there is a clear process for evaluating how these changes will impact disabled people.

 What needs to change?

The proposed actions from Ofgem and the Government offer some short-term relief to some disabled people. However, long-term reforms are needed to specifically address the additional energy costs many disabled people face.

One area of focus needs to be on ensuring disabled people are accessing the support to which they are entitled. For instance, research by the Extra Costs Commission found that 40 per cent of disabled people were unfamiliar with the Warm Home Discount, meaning many individuals could be missing out on this support with their energy bills. We want Ofgem and energy suppliers to work together to increase awareness of these types of support.

We also believe the eligibility criteria for the Warm Home Discount is not as effectively targeted as it could be. We want the Government to review the criteria so that it captures a greater number of disabled people who face additional energy costs.

Over the past couple of weeks, we have been carrying out focus groups to deepen our understanding of the experiences of disabled people in the energy market. This will help us develop recommendations for tackling the additional energy costs faced by many disabled people, but it is clear that Government, Ofgem and energy suppliers all have a part to play.

Tell us about your experiences

Have you faced high energy costs because of your impairment or condition? If you would like to share your experiences, please contact: stories@scope.org.uk.

You can also visit Scope’s website for more information on support with your energy bills.

Smiiffy’s 7 tips for coping with isolation

Josh, popularly known as “Smiiffy”, is a rapper from Birmingham who is looking to challenge attitudes and raise awareness of mental health and disability. He did an Instagram Stories takeover for Scope on Friday, where he shared “What I Need To Say” posts throughout the day, and even wrote a special verse.

I have anxiety, depression and borderline personality disorder. I haven’t been in a good place in the past few months. My anxiety sometimes makes it difficult to be happy, even around my own family. It also means that it’s quite difficult to know what mood I’m going to be in for Christmas.

Josh sitting on a pub bench, looking into the camera

There are a lot of times I do feel isolated. I often find that I do it to myself because I prefer to be alone. I constantly feel alone in a crowd. Even if I’m surrounded by good friends, I feel alone. I sit alone for a while and think that I don’t fit in here. And I feel like I don’t fit in anywhere, which is really difficult sometimes.

Scope’s What I Want To Say campaign is important to me because I feel like Scope’s giving people the opportunity to have a voice and let me say what I genuinely need to say. Letting people know that they’re not alone, and that there are other people there who are wanting to listen to them is incredible.

As part of this campaign, I took over Scope’s Instagram on Friday 8 December, and am sharing my top tips for reducing isolation:

Smile

Whether it’s someone I know well, or a stranger in the street, one of my favourite things to do is just smile. I feel like if someone’s having the worst day, at least I’ve acknowledged them. Plus, it always makes me feel much better too!

A hug always helps

Hugs always make me feel good. Be it a friend, a boyfriend, a girlfriend, a cousin, a family member or whoever, it helps you forget about the loneliness, depression and anxiety you might be feeling for a while.

Social Media

Josh taking a selfie in front of a mirrorI always thought that I’d be lonely and I posted that on social media. That was the first time that I accepted my own mental health. Telling people how you feel on social media can help things improve.

I use it positively, to raise awareness and let people know that there is help out there. You can also be anonymous on social media and that can make it easier to talk about the fact that you’re struggling.

Find someone to talk to

For people that are lonely, there are a few community clubs and centres out there that are open for people on Christmas day. If people are alone, that’s definitely one thing that could help.

If you’ve got family around you but you’re still struggling, just trying to talk to people can help. In most families, there’s at least one person that understands, so if you can speak to that one person, then things can get easier. Just expressing your needs to somebody else will help in the long run, because they will find a way to help you through it.

Speak to organisations that can help

Josh (Smiiffy) wearing a Scope T-shirt

Scope have helped me massively. They’ve helped a lot of friends too. I’ve never really told anyone that I have Bilateral Perthes’ disease but through working with Scope and seeing the work they do, it made me feel confident enough to tweet about it. I feel motivated by Scope to raise awareness of invisible impairments, like mental health.

Do something you love

I think that a hobby, something you’re good at or enjoy, can help. When I started music, I wanted money, fame, popularity but then I released a song about when I was struggling called “Air I Breathe”. When I realised how many people it had impacted, I knew that was my calling.

Music has been hard because I don’t like the attention but I fought off my fears. If you have a talent and use it to create good things for yourself and inspire thousands of others, it can be life changing. I also like giving back to charity because as well as music, charity saved my life.

Smiiffy, a young disabled man, smiles by a microphone

Help raise awareness

Over the years thousands of people have messaged me and said positive things like “I love your music, you’ve saved my life” or “you’ve made me open up about my own mental health” which is incredible.

I want people to let people know that, if they’re struggling to talk or feel like they’re not going to be heard, speaking out about what you’re going through can really help.

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.

Poor accessibility can lead to isolation, but this theatre company is changing that

Pippa works on Scope’s online community and is also an accessible theatre blogger. The festive season seems to be filled with activities but when they aren’t accessible, disabled people and families are often left out. This can be very isolating. For our What I Need to Say campaign, Pippa spoke to Erin, whose company DH Ensemble is leading the way in accessible theatre.  

Going to the theatre is an experience enjoyed and cherished by many families, especially during the festive season. However, like many other activities, theatres and shows often fail to be wholly inclusive of disabled people.

Although the accessibility of venues is improving, content isn’t always suitable for people with specific disabilities. However, one theatrical company with inclusivity at its heart is The DH Ensemble (previously called The Deaf & Hearing Ensemble). I talked to Erin Siobhan Hutchings about their new show.

Based on Erin’s own experiences of growing up with her deaf sister, ‘People of the Eye’ features Deaf and hearing cast members and uses stunning visuals to create an immersive experience for all.

Accessibility is a forethought, not an afterthought

Accessibility is built into the aesthetic, so deaf and hearing audiences can enjoy the show on an equal basis. For example, we use integrated sign-language as well as creative captioning, so whether you’re relying on that to access a performance or not, it brings so much more to your understanding of the world and the characters. I think that makes the work so much more interesting. It adds layers to the narrative and the way that you tell the story and connect with the audience.

Whilst the show was primarily designed with D/deaf and hearing audiences in mind, we also strive to ensure that venues where the show are performed are wheelchair-accessible. The production team also take precautions to ensure that audiences are aware of the visual effects beforehand, by sending out resources including descriptions of lighting effects and images of the projections used to those who request them.

Two women on a stage in front of the words '2 player mode'

Being excluded can be really isolating

The story is about myself and my sister growing up but it could easily be replaced with many other disabled people’s stories. The crux of the story is about families, relationships and isolation, and how important it is that we accept each other.

Deafness isn’t necessarily a disability that cuts you off physically or intellectually, but it’s isolation that can really affect people who have hearing loss. It’s that inability to communicate in a social situation that can be really isolating and that’s something that I noticed with my sister growing up.

We’ve tried to really show that in a way that puts the audience in that position, so some feedback we’ve had from audience members is that maybe a hearing person might not understand everything that happens in the play but that’s an important experience for them to have, they get some insight into that feeling of isolation themselves.

What I would really like people to take away is a little bit of empathy about the way that other people live their lives, and some idea about isolation and communication and how important that is. Then hopefully they’ll take that out with them into the world and influence the other spaces they go into.

Making theatre more accessible

It’s important that we’re all realistic about the diverse world that we live in. We’re a co-led deaf and hearing company and we strive to maintain that.

People understand that it may not be possible to make every single show accessible for everybody, but if you’re open to discovering what can make your work accessible, that’s a start. It’s better to ask people who really live the experience and get their feedback. I went to an interesting discussion with deaf and disabled artists recently where this was addressed.

Accessibility shouldn’t just be a tick-box exercise – put on a British Sign Language (BSL) interpreted show and do one relaxed performance and that’s it. That’s not really exploring the depth of how we can make sure our theatrical environment and all aspects of our society are welcoming for everybody, and that people can feel equal to everybody else.

As accessible theatre continues to slowly improve, it is the innovative work of companies such as The DH Ensemble that are really making strides in helping to address isolation and ensure that theatre really is becoming more inclusive for all.

The DH Ensemble is led by Jennifer K. Bates, Stephen Collins, Sophie Stone and Erin Siobhan Hutching. You can see People of the Eye in 2018:

  • 23 March Harlow Playhouse
  • 26 March Arlington Arts Centre
  • 7 April Nottingham Playhouse

Find out more about DH Ensemble and People of the Eye and get involved with our What I Need to Say Campaign.

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

What does the Government’s plan to tackle disability employment mean for disabled people?

Today the Government set out its plan to support more disabled people to enter and stay in work, with a laudable ambition of getting a million more disabled people into work over the next ten years. The Prime Minister said she is “committed to tackling the injustices facing disabled people who want to work, so that everyone can go as far as their talents will take them.”

This follows on from a government consultation last year which looked at ways to improve support for disabled people both in and out of work.

We’ve taken a closer look at the Government’s plan published today and what it could mean for disabled people.

At Scope, we know that there are one million disabled people who can and want to work. Yet too many face barriers to entering, staying and progressing in work.

This is a huge waste of disabled people’s talent and potential, which is why we’ve been campaigning over the last four years to convince the Government to address the challenges faced by disabled job-seekers and employees.

Illustration of a CV with a tick next to it. Text: one million disabled people can and want to work
One million disabled can and want to work

The Government today has announced a series of measures to increase disability employment and change the workplace for disabled people. These include trials that will look at ways to support disabled people to move into employment and proposals to support disabled people to stay in work. There is also a greater focus on the role of employers in supporting disabled people in the workplace.

Last year we gathered many of your views and experiences of work and the workplace. It’s positive to see the Government’s ambition, but it’s vital this plan leads to swift and meaningful action if they are to meet their pledge to get one million more disabled people into employment over the next ten years.

Work Capability Assessment

The Work Capability Assessment (WCA) is the gateway to a higher rate of benefit for disabled people whilst out of work. We’ve long been calling for the Government to replace the WCA with a new assessment which more accurately recognises the barriers disabled people face to entering and staying in work.

The Government has said it will be exploring ways to improve disabled people’s experiences of the assessment process and provide more personalised support.

Whilst this is a step in the right direction, this does not go far enough. We need to see a complete overhaul of the assessment that accurately identifies the back-to-work support disabled people need. It is important that any assessment for financial support is separate from any conversations about support to move into work.

Employment support

The Government have set out a series of proposals for testing new ways of offering support to disabled people to take up employment.

This includes exploring the idea of personal budgets for employment support and testing out an offer of voluntary employment support for people in the support group of Employment and Support Allowance.

We think these ideas have the potential to help disabled people get the tailored support they need to get into work. However, it’s vital that any engagement with employment support is voluntary and has no impact on the financial support an individual receives.

Employers Driving Change

The Government has also announced a range of measures to improve the workplace and highlight the role employers play in tackling disability unemployment. This includes a focus on getting large employers to voluntary publish information on their disabled employees, as well as a greater focus on providing employers with information and advice

We think this is positive news. Our research shows that 48 per cent of disabled people have worried about sharing information about their impairment or condition with an employer, demonstrating that we need to do more to create inclusive workplaces for disabled people.

A graphic showing statistics from Scope research. It reads "48 percent of disabled people have worried about sharing information about their impairment or condition with an employer"
48 percent of disabled people have worried about sharing information about their impairment or condition with an employer

 

This change will help to give employers a better sense of areas where they’re doing well at recruiting and retraining disabled staff, and areas they need to look at where disabled people are underrepresented.

Access to Work

There are also a range of measures to improve the Access to Work scheme. This provides essential resources and support that disabled people need to do their jobs.

It can make a huge difference to working disabled people, but we know that disabled people can sometimes face issues with the scheme, such as delays in getting support, or loss of their package of support if they change role within the same organisation.

This can make it harder for disabled people to stay in their jobs. We know that for every 100 disabled people moving into work, 114 leave, meaning its critical disabled people have the right support once in employment.

The Government has proposed changes to improve the delivery of the scheme, which include investing in its Mental Health Support Service and making it easier for disabled people to take their awards with them when they change jobs. However, it is crucial the Government invests in Access to Work so that a greater number of disabled people can benefit from the scheme to help them stay in work.

Statutory Sick Pay

There is also a commitment to consult on Statutory Sick Pay (SSP). This is money paid by an employer to their employee while they are off sick, either instead of, or after, occupational sick pay.

The Government’s proposal would help to increase disabled people’s income during a phased return to work after a period of sickness absence. However, we want to see the Government go further and reform SSP so that disabled people have greater flexibility in managing fluctuations in their condition whilst at work.

What next?

Today’s publication includes a range of measures that could help tackle the disability employment gap and improve the workplace for disabled people. It’s critical that disabled people’s experiences are at the heart of any changes.

The Government now needs to build on this plan and ensure that it quickly leads to real change for disabled people.

Scope will be continuing to campaign on disability employment so that more disabled people can enter, stay and progress in work.

As part of this, Scope has launched its Work With Me campaign with Virgin Media to get government, employers and the public to tackle the issues faced by disabled job-seekers and employees.    

Find out more about our campaign and how you can get involved.

Disability History Month 2017

To mark Disability History Month this year we’re looking at famous disabled artists who used their art to express What I Need To Say

Michelangelo

“If people knew how hard I worked to get my mastery, it wouldn’t seem so wonderful at all.”

Five years before his death Michelangelo was diagnosed with kidney stones. As a result, art historians have often focused on that and the possible repetition of kidney shaped designs in his work.

However, more recently, the debate has been around whether he also had gout or arthritis and if his work as a painter and sculptor exacerbated or eased his condition.  Portraits of the artist especially those showing his hands have been pored over to determine which condition he had. Michelangelo also included himself as an old man in several of his later works which has provided additional evidence for this debate.

Pietà bandini by Michaelangelo
Pietà bandini by Michaelangelo

Francisco Goya

“Fantasy abandoned by reason produces impossible monsters.”

Goya is often referred to as the last of the old masters and the first of the moderns. In 1793 he developed a severe but unidentified illness which left him deaf. After this, his work  – which had been characterised by portraits of society figures and tapestry designs – began to reflect a darker more pessimistic outlook. His portraits  came close to caricatures reflecting what Goya really saw rather than how his subjects might want to see themselves.

For a period towards the end of his life he lived an almost hermit-like existence in a farmhouse outside Madrid where he produced the famous Black Paintings – dark, sometimes gruesome murals painted in oils directly on the walls.

Francisco de Goya - Tio Paquete (oil on canvas, c.1820)
Francisco de Goya – Tio Paquete (oil on canvas, c.1820)

Frida Kahlo

“Feet, what do I need them for
If I have wings to fly.”

Frida Kahlo is probably best known as a feminist icon, but did you know she was also a disabled person? Kahlo was born with spina bifida, and after contracting Polio as a child was left with her right leg being thinner than her left. Following a severe car accident, Kahlo began painting self-portraits which depicted her impairments in a fearless way.

Frida Kahlo's 1939 oil painting “The Two Fridas.”
Frida Kahlo’s 1939 oil painting “The Two Fridas.”

Paul Klee

“A line is a dot that went for a walk.”

Klee was a German artist active during the first half of the twentieth century. As a child he had been a musical prodigy but as an adult his focused on his art. His theories and writing on the theory of colour were very influential and he taught with Kandinsky at the Bauhaus School of art.  His own work reflected a dry sense of humour as well as a sometimes childlike perspective.

One of his most productive periods was during the early 1930s but at the same time he was persecuted by the Nazis and forced to leave German. It was also during this time that he started to show the symptoms of scleroderma. It limited his output for a time until he modified his painting style to create more bold designs with his alternating moods making the paintings lighter or darker.

Klee’s scleroderma was only diagnosed ten years after his death in 1940 but World Scleroderma day is now on June 29, the date of his death.

Paul Klee Halme 1938
Paul Klee Halme 1938

Henri Matisse

“I have always tried to hide my efforts and wished my works to have the light joyousness of springtime, which never lets anyone suspect the labors it has cost me….”

Henri Matisse was one of the most innovative painters of the twentieth century. In 1941 he almost died from cancer, and after three months in recovery he became a wheelchair user. Matisse credits this period of his life with reenergizing him, even referring to the last 14 years of his life as “une seconde vie,” or his second life.

He adapted his artistic methods to suit life in a wheelchair, making artwork out of coloured paper shapes. You may have seen this work in the exhibition The Cut-Outs which was featured in the Tate Modern in 2014.

La Perruche et la Sirene by Henri Matisse 1952
La Perruche et la Sirene by Henri Matisse 1952

Yinka Shonibare, MBE

“Your head goes crazy if you pursue what ifs.”

Yinka Shonibare is a British conceptual artist with Transverse Myelitis, which paralyses one side of his body. Shonibare uses assistants to make work under his direction, and is famed for exploring cultural identity, colonialism and post-colonialism within the contemporary context of globalisation.

In 2004 he was shortlisted for the Turner Prize for his Double Dutch exhibition, and was awarded an MBE in the same year.

Nelson's Ship in a Bottle by Yinka Shonibare
Nelson’s Ship in a Bottle by Yinka Shonibare

Stephen Wiltshire

“Do the best you can and never stop.”

Wiltshire is an autistic savant and world renowned architectural artist. He learned to speak at nine, and by the age of ten began drawing detailed sketches of London landmarks. Recently, Wilshire created an eighteen foot wide panoramic landscape of the skyline of New York City, after only viewing it once during a twenty minute helicopter ride. The Stephen Wiltshire gallery can be found in Pall Mall, London.

Venice by Stephen Wiltshire MBE
Venice by Stephen Wiltshire MBE

Learn more about our What I need to Say campaign 

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.