Tag Archives: health

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 

Health and social care must work together to improve the lives of disabled people

Today the House of  Commons Public Accounts Committee, an influential cross-party group of MPs who monitor Government spending, will start taking evidence into the integration of health and social care and how well it’s going. 

At the end of the inquiry the Committee will make recommendations to Government about how to improve the social care system.

400,000 disabled people rely on social care to get up and get dressed and good social care can support disabled people to work and participate in their communities if they want to. Yet too often disabled care users report poor experiences and poor outcomes and we are campaigning to improve social care for disabled people.

Social care has been high up the political agenda recently because of the funding crisis so this inquiry comes at an important time. We think it’s vital the Committee carefully examine how the social care system is working for working age disabled adults and hope they tell the Government how to improve the care disabled people receive.

What is integration and why is it happening?

Traditionally the support people receive from the health service – such as getting up and getting out of the house or in a residential care setting –  has been funded and organised separately from social care support.

Integration aims to get health and social care working together, focusing on a person’s needs and ambitions regardless of whether what they need support with is classed as a ‘health need’, a ‘care need’ or both.

The aim is to avoid unnecessary delays in people accessing the support they need and to ensure support is joined-up when they do receive it.

What we want the Government to do

Working age disabled adults make up a third of all social care users but our research found that 55 per cent of them think social care never supports their independence. So, the Government need to do more to ensure local authorities prioritise the needs of disabled care users.

When the Government announced the Better Care Fund they set out a number of ways they were going to measure how effectively local areas were spending the money.

Currently, these measures look at issues such as whether the number of hospital admissions has reduced rather than whether an individual receiving care is being supported to live independently in the way they choose. Our research found that of the 91 Better Care Fund Plans approved in October 2014 just 14 included schemes specifically aimed at disabled adults under 65.

We want the Government to change to the way they measure the success of the Better Care Fund and other integrated care schemes so that they include outcomes relevant to working age disabled adults. This could include things such as whether social care is supporting disabled people to access employment or education or have contact with their local community.

We asked young disabled social care users aged 17 – 30 about their experiences of social care and they told us they would like more support in areas such as transport, where to live and employment. 60 per cent of respondents said they would like support with employment but do not currently get this.

We think integrated care teams supporting young disabled people should build partnerships with local specialist employment services, in order to support people who use their services to access up to date information and support that is relevant to them.

Finally, the extreme financial pressure both the NHS and social care system are under makes successful integration more difficult. In order to make integration work for working age disabled people the Government must also commit to sustainably funding social care.
That’s why we are calling on the Government use the Spring Budget to provide the social care system with the funding it so urgently needs.

Read more about our work to improve Social Care for disabled people.

Nobody is ‘too pretty’ to be in a wheelchair – Sarah

30 under 30 logo

This story is part of 30 Under 30.

 

Sarah is a 29 year-old blogger who writes about beauty, lifestyle and living with chronic pain, as well as running #SpooniePost – a project to support fellow chronically ill people. She has a Masters in English and she’s also a trustee for Enhance the UK and the editor of their new online magazine, Liability Magazine.

For 30 Under 30, Sarah has written a guest blog about her passion for beauty and society’s problem with people who don’t ‘look disabled’.

I’ve experienced quite a lot of judgement, negativity and ableism over the last few years. Don’t get me wrong, I’ve also had so many positive things happen too, but I wanted to address something that seems to be a common occurrence: the view that some disabled people don’t ‘look disabled’.

I don’t know where this skewed idea of what a disabled person looks like has come from, but I’m getting a bit tired of hearing that I ‘don’t look sick’, or I’m ‘too pretty to be in a wheelchair.’

Disability doesn’t discriminate

I’m a 29 year old woman who suffers with a long list of conditions that I won’t bore you with, but ultimately, I live with chronic pain. I use a powered wheelchair, various splints and compression supports, and I don’t ‘look sick’. Do you know why? Because disability doesn’t discriminate; my appearance has absolutely no bearing on my health.

How is pain supposed to be represented on the body? You could see the suitcases under my eyes from not sleeping due to the pain, if I didn’t hide them with concealer. You could tell me I look pale and ill if I hadn’t added foundation and blusher to my morning routine. Should I be covered from head-to-toe in bruises because then it’s visible? Then an outsider can see, and then they believe my pain is real. Then I’ll ‘look disabled.’

Sarah puts on pink lipgloss

Should I not care about my appearance because I use wheels instead of legs?

I make an effort whenever I leave the house. I make it my mission to go out at least once a week (unless I’m in a flare-up), even if it is just to the Post Office. I brush my hair and I always, always, do my makeup. I’m going out, once in seven days, I want to look presentable, I want to look cute, and make an effort. Should I not care about my appearance because I use wheels instead of legs? Should I not wear heels because I can’t walk in them?

I am just as entitled to slap on some lippy, blend out a smoky eye, contour my face like Kim Kardashian and rock stilettos as much as the next person, and my wheelchair, my disability shouldn’t determine whether I should or not. I’ve seen the sideways looks, heard the snide comments, and I’m here to tell you that disabled people have the same interests and insecurities as able-bodied people. I love beauty, I love playing with makeup, it makes the little girl inside of me happy; so when it’s time to go out, I do my best to make sure I present myself in a way that makes me feel good. After all, I put all these products on my face for my benefit.

Doing my makeup is a form of self-care for me

I’m a girly-girl, I love makeup, hair, lashes, nails; and being in constant pain has absolutely no impact on the way I look when I leave my house. Doing my makeup is a form of self-care for me, it makes me feel confident and it helps with my mental health. I know I’d feel self-conscious if I went out without some concealer at least. I don’t always put a full-face on if I’m just popping to the shop, but sometimes I do, and that’s my choice. Not for one second am I saying that you should wear makeup to feel better about yourself, because I’m not, it just helps ME take on the world.

Sarah strikes a pose wearing a black t-shirt and glasses

The perception of disability is looking like you’re suffering

But because I do wear makeup and I am disabled, there’s negative comments and misunderstanding among some. ‘Why make an effort, nobody will want you anyway…?’ ‘She’s wearing makeup, there’s clearly nothing wrong with her,’ ‘she must be better,’ – if only cosmetics had the ability to eliminate disability! This archaic way of thinking is still very much ingrained in some people as they don’t see the person, they see the disability; and it appears that the perception of disability is ‘looking disabled,’ looking like you’re suffering, being different. If you can’t comprehend that disabled people are so much more than their disability, your view is so outdated.

Wearing makeup does not make me or anyone else with a visible or invisible illness any less disabled; it doesn’t change our conditions in any way whatsoever. And no matter whether I wear a truck-load of makeup, wear the highest heels, have tattoos and piercings, it shouldn’t make you question if I’m faking, miraculously better or disabled.

I’m disabled and I wear makeup, so what?

Sarah is sharing her story as part of our 30 Under 30 campaign. We’ll be releasing one story a day throughout June from disabled people under 30 who are doing extraordinary things. Keep up to date with all of our new stories on our 30 under 30 page.

To read more from Sarah, check out her blog Sarah in Wonderland.

Five wheelchair exercises you can try at home

We’ve asked Kris, founder of Wheely Good Fitness, to do a guest blog for us on his top five stretch exercises to help increase flexibility and movement.

Kris is taking part in the Virgin London Marathon 2016 – you can sponsor him online.

For those of us new to exercise or restricted by the side effects of disability and health conditions, starting can be extremely daunting. Many of us will be familiar with the saying ‘use it or lose it.’ So it’s important to try as much as possible to keep what we have and improve where we can, to prevent additional health problems.

One of the first things we can lose is our flexibility. Reduced flexibility can restrict our movements, causing stiffness and aches.  Performing stretches on a regular basis can help maintain and improve flexibility, and can easily be made a part of your daily routine.

Here are five important upper body stretches that can be done at home – you can sit either in your wheelchair or on any chair in your house. For all of them, remember to sit upright, with belly button pulled in tight, feet hip-width apart (if your wheelchair allows it).

Chest Stretch

  • Shoulders down
  • Take the arms out to the side of the body
  • Palms facing forward
  • Arms at shoulder heightMan in wheelchair performing chest exercise with arms outstretched
  1. Breathe normally throughout, with your head facing forwards.
  2. Keep your shoulders relaxed. Bring your arms slowly together in front of your body, so your palms touch.
  3. Keep them straight and at the same height as your shoulders.
  4. Slowly take the arms out to the side, with palms facing forwards, until you can feel a stretch across your chest.
  5. Try to hold the position for up to 10 seconds.

Back stretch

  • Shoulders relaxed
  • Take the arms forward slightly, rounding the back
  • Head tilted forward
  • Arms out straightMan in wheelchair performing back stretch, with arms stretched forward and head down
  1. Keep shoulders relaxed and avoid rolling them forward as you move into the stretch.
  2. Bring your arms in front of your body, keeping them straight, palms facing down.
  3. Imagine there’s a rope tied around your wrists, pulling you forward, so you can keep extending your arms.
  4. Allow your lower back to round a little and tilt your head down – you should feel a stretch through the lower and middle part of your back.
  5. Breathe normally, and be aware of your balance.
  6. Try to hold the position for up to 10 seconds.

Upper body stretch

  • Take the arms out to the side of the body
  • Bring the arms up and over the head
  • Head facing forwards
  • Take the stretch up through the bodyMan in wheelchair performing upper body stretch, with arms stretched upwards
  1. Keep your shoulders relaxed, avoid lifting them up to your ears when you start the stretch.
  2. Start with your arms down by your sides, then slowly bring them out to the side (like wings), taking them as high above the head as you can. As your arms reach shoulder height, lift your chest and torso with them and try to make yourself taller.
  3. Try to hold the position for up to 10 seconds.

Oblique stretch

  • Take the arms out to the side of the body
  • Bring the arms up to shoulder height 
  • Keep upper body fixed
  • Rotate the body to the sideMan in wheelchair performing oblique stretch, with arms bent out to the sides
  1. Keep your shoulders relaxed, avoid lifting them up to your ears when you start the stretch.
  2. Start by bringing your arms out to the side of the body, elbows flexed and at shoulder height. Keeping your arms, head and upper body fixed, rotate to the side using the lower part of your back until you can feel the stretch down the sides of your body.
  3. Try to hold the position for up to 10 seconds, then switch and do the other side.
  4. Breathe normally, and try not to lean into the stretch or you won’t get the full benefit.

Hand stretch

  • Shoulders down
  • Take the arms out in front of the body
  • Palms facing down
  • Arms out straightMan in wheelchair performing hand stretch, with arms stretched out forward
  1. Keep your shoulders relaxed, avoid lifting them up to your ears when you start the stretch.
  2. Bring your arms straight forward in front of your body, palms facing down.
  3. Extend your fingers and thumbs, widening as much as possible until you feel a stretch through the palm of your hand.
  4. Try to hold the position for up to 10 seconds, then switch and do the other side.
  5. Breathe normally, and keep facing forwards.

Some of these stretches can be adapted into exercise movements that you can perform to your favourite music:

  1. Begin by moving the arms in a gentle marching movement to the beat.
  2. Once comfortable change to a similar move as you did for the chest stretch, gently taking the arms out to the side and back in front again eight times, almost like a wide clapping movement and then go back to marching again.
  3. If you feel able to continue, you can then bring in a version of the upper body stretch by taking the arms to shoulder height and down again, repeating 8 times before going back to the march.
  4. The oblique stretch can then be added in for eight moves before returning back to the march.

This short sequence will give you a little bit of an aerobic workout and you can increase how long you perform it as it becomes easier to do.  Begin gently if only for a couple of minutes depending on how challenging you find it and progress as you feel able.

Kris is taking part in the Virgin London Marathon 2016 – you can sponsor him online.

“I’m running the world’s only wheelchair spin class”

Guest post from Kris Saunders-Stowe, a fitness instructor working with both disabled and non-disabled people. In Scope’s film, he explains why we need to change the way we think about disability and fitness.

We hope it will inspire you to sign up to our inclusive fundraising event, Steptember and get moving this September!

DSC_0184My first response to the idea of using a wheelchair started with ‘f’ and ended with ‘off’! I was an active person, and never saw myself as a wheelchair user.

But my joint problems, which started 14 years ago, progressively got worse and I was doing less and less. Over time – and no word of a lie – I became a hermit. Going out became more and more difficult, and eventually I just thought, ‘What’s the point of going anywhere?’ I never went out apart from to the doctor and the supermarket.

‘It was so liberating’

Then some friends of mine were going to Alton Towers, and the only way I could realistically join them was by borrowing a wheelchair.

And that was it. It was so liberating. Suddenly I was back to normal. It was a completely different perspective – I was free to move about as quickly or slowly as I wanted, and I could do so much more.

That was two years ago, and I’ve never looked back since. My personality has come back, and I take things in my stride rather than letting them get on top of me. In actual fact, I think I’ve got a better life than I’ve had in probably 20 years.

Getting into fitness

I’ve always worked in horticulture and retail – never in sports or fitness at all. But then in 2012, I was in Cardiff and the Australian Paralympic team were staying in my hotel! We got chatting, and I followed the team during the Games and got quite engrossed.

DSC_0518I took up wheelchair basketball and we didn’t have a proper coach, so I had a go at standing in myself. I loved it, and I started thinking: ‘Could I do this for a job?’

Within a couple of months, I had started the qualifications I needed to become a fitness instructor.

While I was training, I realised that there aren’t enough fitness programmes properly tailored for disabled people. The few classes I could find on YouTube were extremely slow and sedentary. The instructor training manuals would say, ‘You may need to adapt this routine for disabled people…’ – but what does that mean? They didn’t say. It was a token gesture.

Wheely Good Fitness

So I decided to set up my own business, Wheely Good Fitness, running classes adapted for physically disabled people. That doesn’t mean they’re gentle or easy – they are pretty intense!

I currently run a variety of classes, including what is quite possibly the only wheelchair spin class in the world. We have a huge range of members, from people with slight mobility problems to those with very complex needs.

It’s incredibly rewarding for me because I can see the change in people. Within a few weeks they’re sitting up straighter in their wheelchairs, their flexibility increases, their confidence grows.

Suzy (right), one of our most committed members, recently pushed herself round a shopping centre for the first time in years. The change in her has been unbelievable.

Changing attitudes

I’m currently writing a set of qualifications for instructors, explaining how to create fitness regimes suitable for disabled people. My hope is that these will be accredited by awarding body Skills Active, which means the qualification will be available for instructors across the country to take.

I am so surprised that no one has looked at wheelchair-based fitness from a different perspective.

People seem to have got used to seeing disabled people as delicate and fragile, rather than as somebody who’s just got a different way of doing things. Being disabled doesn’t mean you need to be wrapped in cotton wool, it just means you need to think creatively about exercise and fitness.

Getting fit and taking control of your body is just another way of demonstrating your capabilities – and suddenly, you’re taking down those barriers.

Find out more about Steptember, and sign up today! 

Health and fitness round-up!

We’ve had a great few weeks discussing health and wellbeing, helping us get into 2015 with a fresh and active perspective. Here’s a handy round-up in case you missed any of our posts. 

Health and fitness tips on the community

We’re really pleased to have launched a health and fitness tips section of our community, which is full of great advice from parents, carers and disabled people. Here’s one from Alex_2014:

“I workout my legs at the gym, and because I have cerebral palsy, it helps me manage it, by strengthening my muscles in that area. I use the leg press and leg extension. I also use a stationary bike, to help with my stamina, as I can get tired easily.”

We’d love you to have a look through and get involved in the conversations, we’re sure you will have loads of great ideas!

Wheely good exercisesFive photos showing a man doing wheelchair stretching exercises

Kris from Wheely Good Fitness gave us his top five wheelchair exercises, which were really popular on Facebook and Twitter.  And if you’re feeling more adventurous then you can step them up a notch to your favourite music.

Transforming perceptions in the fitness industryThree men in the gym with JGFitness clothes

Josh has cerebral palsy, but he’s never let it get in the way. He told us all about the benefits of bodybuilding, how it’s increased his stamina and confidence, and made him loads of new friends. He’s transforming perceptions of disability in the fitness industry and he loves it.

Ask a fitness expert

We had a Q&A with Rob, a disabled sports coach from Active Nation, a national charity committed to ‘persuading the nation to be active.’ If you get in quick he’ll still be able to answer any health and fitness questions relating to disability you might have!

Have a rambleDisabled ramblers - people walking and in motorised chairs

And if all this fitness talk gets you tired, remember that it’s not just about getting your heart rate up. It’s so important just to get out and about into the fresh air – it does a world of good for body and mind. That’s why we recently had a guest blog featuring the Disabled Ramblers, who find alternatives to manmade barriers such as steps, stiles and gates in the countryside that limit accessibility for disabled people.

Need a goal?Someone holding a medal

If we’ve got you motivated but you’d like a goal to get you going, you can always check out Scope’s fundraising events for inspiration.

We’d love to know how your start to 2015 has been going – have you stuck to your New Year’s Resolutions? Has any of our health and fitness information inspired you to get active? 

Let’s start a bigger conversation about integrated support for disabled people

Today the Barker Commission publishes its final recommendations about the future of health and social care.

Alongside welcome proposals for increased investment in care, the Commission has reignited the debate about the best way of merging a health system that’s universally free at the point of use with a social care system where access is rationed through eligibility tests and means-testing.

Political debates about integrating health and social care are also heating up, with recent announcements in the Government’s Better Care Fund, Labour’s Whole Person Care and the Liberal Democrats’ proposals for ring-fenced pooled budgets.

This is not just a debate about older people; it’s about working-age disabled people too.

Integrated support is about recognising that people don’t live their lives in neat public service boxes or have simple sets of distinct needs that can be addressed separately.

Many of the Barker Commission’s recommendations are relevant to disabled adults. The Commission calls for care to be redesigned around individual needs, regardless of diagnosis. It calls for public debate about how much people should be expected to contribute to the costs of support. It seeks to remove duplication and complexity for individuals.

But almost a third of social care users are working age disabled adults and this represents over 50 percent of social care expenditure.

We need to think about how integration might differ for disabled adults. Integrated support can take many forms and means different things to different people depending on their age, needs and aspirations.

We need to look beyond health and social care

Unsurprisingly, disabled adults tell us the purpose of integrated support should be to help them live more independently – to build relationships, choose where they live and work, participate in the community and afford essential goods and services.

These outcomes are all interdependent and we shouldn’t treat them in isolation, but that’s exactly what the current support system does.

For example, a disabled person’s care package affects their ability to work. Without support to get washed, dressed and ready for work, it is almost impossible to get a job.

Scope worked with four other leading charities and Deloitte to show that providing social care for disabled people with lower level needs could create wider financial savings for the Treasury. Better join up between employment support and social care services would allow disabled people, social workers and employment advisers to identify where a lack of social care support is stopping someone from finding sustainable employment and to address this effectively.

So for disabled people, integrating social care with other aspects of support like out of work support – might be more helpful than integrating health and social care.

We also know that life costs more when you’re disabled. Extra costs payments (DLA and PIP) have a distinct role in supporting disabled people to offset the extra costs of disability. Future discussions about integration need to recognise the difference between support needed to live independently and support to off-set the extra costs of disability. Both are equally important.

What should integrated support for disabled adults do?

Because we know politicians are interested in this issue, we’ve developed some principles for integrated support based on what disabled people have told us about their living standards.

We think any integrated system of support should:

  • Make it easier to live more independently
  • Remove genuine duplication from the perspective of those receiving support (rather than the organisations and systems giving support )
  • Have clear, measurable benefits for disabled people, rather than immediate financial benefits for the state
  • Prevent or reduce future support needs
  • Be holistic and allow people to achieve the outcomes that matter to them
  • Capture everyone who needs support and not result in anyone falling out of the support system
  • Not drive up extra costs for disabled people
  • Be flexible so that people can easily move between different types and levels of support
  • Use personalised assessments, systems and processes
  • Achieve the right balance between national conditionality and local discretion

Where next?

Do you ever feel that the support you receive could be simpler or more joined up?

Scope wants to hear your ideas on what integrated support for disabled people should do, and what it could look like.

Over the next few months Scope will be holding conversations what integrated support for disabled adults could look like.

We’re also running an independent Commission to investigate ways of driving down the extra costs faced by disabled people and their families.

Together, we can use the Barker Commission as the start of a much bigger conversation about integrated support for disabled people.