Mental health – “It’s a conversation for everyone”

Abbi was born with a genetic bone disease called osteogenesis imperfecta, also known as ‘OI’ or brittle bones. She also has mental health conditions.

In this blog, she responds to the speech the Prime Minister made at the annual Charity Commission yesterday. The Prime Minister made an announcement of additional support for those in the workplace with mental health issues.

On my ninth birthday, I was given a fluffy, purple, ‘Groovy Chic’ journal. It was one of those lockable ones which came with a set of tiny keys and quickly became one of my most prized possessions. Inside, I kept all my innermost thoughts – lists of my favourite Beanie Babies, ways in which I could become more like my idol, Jacqueline Wilson.

And regular updates on how much I wanted to die.

We need to feel able to talk about mental illness

In her speech at the annual Charity Commission yesterday, Theresa May noted that 50% of adults with mental health problems began to develop their illnesses before the age of 14. If that seems scary, it is. In fact, by the time I was 14, the only thing I detailed in my diary was my food intake and the number of sit-ups I’d done that day. Yet it would be seven more years before I finally received an intensive course of cognitive behavioural therapy (CBT) to treat my anorexia.

Since the days of my fluffy, purple diary, my mental illnesses have cost the government untold amounts of money in hospital admissions, medications and police call-outs. They have had a tangible effect on my performance at school and university and they continue to cause trouble in both my personal and professional life.

As Mrs May identified yesterday, early intervention is both critical to the recovery of those with mental illness, and of great long-term benefit to the economy. If we want to increase the recognition and treatment of mental illness in children and teenagers, then we urgently need to feel able to talk about mental illness ourselves.

Abbi, a young disabled woman, smiles and sits in her wheelchair behind a table

Mental illness isn’t palatable, but it’s a fact of life

When we talk about talking about mental health, we often make a comparison with how we talk about physical health. Whilst that’s not entirely helpful – our societal and medical treatments of physical illness still have a long way to go – it’s nevertheless often easier to discuss most physical illnesses than it is to discuss most mental ones. I’m happy to publicly disclose that I have both, yet even I regularly blame psychological symptoms on my physical conditions. After all, ‘my arthritis has flared up’ sounds a lot more palatable an excuse than, ‘I’m afraid that if I leave the house, the voices in my head will make me throw myself in front of a bus.’

Mental illness isn’t palatable. It’s rarely an easy fix. But it is a fact of life, and when we make it difficult for people to talk about – when we make employees feel uncomfortable disclosing mental illnesses, or brush off symptoms of self-harm as ‘teenage angst’, or refuse to believe that children might be capable of suicide – then we allow those illnesses to flourish.

Closing her lecture yesterday, Mrs May made an important point – ‘Mental health problems are everyone’s problem.’ Mental illness isn’t just a conversation for doctors’ offices and psychiatric hospitals. It’s a conversation for classrooms, and car rides, and water coolers. It’s a conversation for teachers and parents and friends. It’s a conversation for everyone. Join in.

Read Scope’s response to the Prime Minister’s mental health pledge.

For free information and support about disability, please contact Scope’s helpline at helpline@scope.org.uk.

You can also join Scope’s Online Community where you can share experiences, get disability advice and discuss the disability issues that matter to you.

Our priorities – influencing government in 2017

It already seems that Brexit is set to be the biggest political story of 2017 with the Government expected to trigger Article 50, beginning the formal process of the UK leaving the European Union, by the end of March. We think it is really important that disabled people’s voices are heard as part of this process and vital that progress towards equality made in recent years is not lost.

There will also be plenty of other important moments throughout the year and we will be working hard, with you, to make sure issues which affect disabled people’s lives stay high on the political agenda.

Social Care

Social care was hitting the headlines at the end of 2016, with warnings from the Local Government Association and Care Quality Commission that the system is in crisis. With the Government accepting a long-term solution to care funding needs to be found, social care is likely to remain high on the political agenda in 2017. Some additional funding will enter the system this year through an increase in council tax and from the Better Care Fund, but with a funding gap of £4.6 billion, this won’t provide the long term solution needed to meet rising demand and costs.

Social care is the support disabled people rely on to get up, get dressed, get out, and lead independent lives. Without that support disabled people can become isolated, can’t contribute to society and risk slipping into crisis. That’s why we are campaigning for long-term and adequate funding for care. Over 400,000 working age disabled people rely on social care, and with much of the recent focus on how care affects older people, we will be continuing to raise awareness with decision makers of disabled people as users of social care. 55 per cent of disabled care users tell us the system never supports their independence, so we are campaigning for a care system which supports disabled people to live independently and have choice and control over their care.

Employment

In February the Government’s consultation on disability, health and work will close. We want to see the Government take the opportunity to bring about real reform of the support disabled people receive both in and out of work.

The Government announced in October last year that people with severe conditions will receive continued Employment Support Allowance without needing repeated Work Capability Assessments. This is a welcome change but we want to see the Government go further in 2017 and completely overhaul the Work Capability Assessment so that it identifies the full range of barriers disabled people face to work.

We believe disabled people must be protected from any additional conditions linked to the support they receive. We would campaign against any attempts to impose requirements on disabled people receiving support.

The Government want to hear from disabled people about their experiences of employment support services and at work. Read more about how you can submit evidence to the consultation. Later in the year we are expecting the Government to publish a more detailed plan about how they intend to reform support for disabled people following the consultation, and at Scope we will be pushing for swift action.

Employers also have a key role to play in halving the disability employment gap. 85 per cent of disabled people think employer attitudes haven’t improved over the last four years and more needs to be done to encourage employers to create flexible modern practices. The Government should set out a long-term vision for Disability Confident this year and develop a campaign promoting the business benefits of disability employment.

Despite significant pressure on the Government from MPs from all political parties, the reduction in financial support for new claimants in the Work Related Activity Group of Employment Support Allowance is going ahead in April 2017. We will continue to raise concerns about the harmful impact this will have on disabled people and call on the Government to reserve this decision.

Extra costs

Following the publication of the Extra Costs Commission Progress Review in late 2016, we’ll be continuing to campaign to drive down the extra costs disabled people face and working with businesses in a range of sectors to look at ways they can provide a better service for their disabled customers.

In 2017 we expect government to announce a consultation on consumer and market policy. We’ll be continuing to campaign for markets to work better for disabled people, and for a cross-governmental approach to tackle the range of costs faced by disabled people.

We are also expecting the Government to publish their second independent review into Personal Independence Payments (PIP) which will include recommendations for reform, particularly around the assessment process. We want to see the assessment for PIP more accurately capture the range of extra costs disabled people face from higher energy bills to the need for specialised equipment. Given that disabled people spend an average of £550 a month on disability related costs it is vital that the value of PIP is protected.

In 2017 we want to see long-term funding for social care so that all disabled people who need support can get it, reforms announced that will support more disabled people in employment and to halve the disability employment gap and the protection of financial support for disabled people. We will be working closely with disabled people to continue to raise these issues with the Government.

2016 in parliament – Our impact

2016 has been a busy year in politics. We’ve seen the Government make a significant U-turn to stop proposed changes to Personal Independence Payments (PIP), an important consultation announced on the future of health, work and disability, Brexit and increasing pressure on the Government to provide the social care system with the funds it urgently needs. Scope has focused on protecting the rights of disabled people throughout 2016.

Theresa May used her first speech as Prime Minister to outline her vision for the country. She said she wanted to create a country that worked for everyone and create more opportunity for people, regardless of background. Whilst we welcomed this, much more can be done to help those ‘just about managing’, especially when recent research has uncovered that nearly half of people in poverty are disabled themselves or live in a household with someone who is disabled. We’ve raised these concerns with Government, and we need to keep hearing from you about what needs to change.

While the world was excited by the Paralympics in Rio our research found that whilst 78% of disabled people, through the Paralympic Games, have a positive impact on attitudes towards disability. Only 19% felt that Britain is a better place to be disabled now, than four years ago.

That’s why we have met with officials at Downing Street to emphasise the importance of making their social justice plans focus on improving the lives of disabled people.

Social Care

Social care has dominated the agenda in recent weeks and has been a big talking point all year. At Scope we’ve been calling for sustainable funding for social care to ensure disabled people have access to suitable care. The lack of additional funding in the Autumn Statement was disappointing and the small increase in council tax for social care won’t last and isn’t a long term solution.

In October we shared our research into the experiences of young disabled people and care ‘Leading My Life My Way’ with Government. This research uncovered that 60 per cent of young adults felt let down by their social care provision and a quarter were either only slightly or not at all involved in decisions about their care.

Many young disabled people are not being supported to do the things they want to do in their lives.

“I think it [support package] covers my blindness and my hearing impairments and the practical things I need to do, but it doesn’t give me enough time to go out and socialise.” Ricky, 26, South East

Urgently addressing the funding crisis in social care is the first step to delivering this.

Extra Costs

In March, we saw the disability community unite against proposed changes to PIP announced in the Budget. These changes would have left 640,000 people worse off financially. We warned the Government that these changes would just make disabled people’s lives harder and that our helpline heard from many disabled people concerned about the changes. We urged the Chancellor to think again and consider the impact these moves have on the lives of disabled people.

The Government u-turned and said it would not be going with this plan and committed to no further welfare cuts during this parliament.

In October we published the one-year on report of The Extra Costs Commission looking at action taken by businesses, government, regulators and consumers to drive down the £550 financial penalty of being disabled.

Uber and Marks & Spencer were two examples of companies introducing new products and practices to serve their disabled customers better. We would now like to see more businesses recognise the value of their disabled customers and will be focusing on improving service in the energy and insurance industries in the New Year.

Employment

Following our campaign in 2015, the Government committed to halve the disability employment gap and this year we have continued to call on them to introduce reforms to meet this target.

Alongside other charities this year, we have campaigned changes to Employment and Support Allowance (ESA) due to come into effect in April 2017.

The Government plans to reduce the level of financial support to disabled people in the Employment and Support Allowance Work Related Activity Group (WRAG). Disabled People in the WRAG have been found unfit for work by the independent Work Capability Assessment. This cut in support of around £30 a week to new claimants would impact nearly half a million people in the WRAG.

We believe this cut will push disabled people further away from the jobs market and make their lives harder rather than helping them overcome existing barriers to employment.

MPs and Peers from across different political parties supported our calls and argued the change must be postponed. Although the Government pushed ahead with this cut, we will continue to campaign against it.

In October the Government published a Green Paper on Work, Health and Disability which set out proposals to reform support for disabled people in and out of work.

We think it is right the Government is consulting on this and welcome some of the proposals, including working more closely with employers, challenging attitudes and halving the disability employment gap. We want to see wholesale reform of the fit for work assessment scheme, employment support to be made voluntary and significant shifts in employer attitudes towards hiring disabled people.

However, we’re concerned that the Government is considering extending requirements to look for jobs and attend employment programmes to people in the support group of ESA.

The consultation is open until February and the Government want to feedback on their proposals. Our latest blog on the Green Paper sets out how you can get involved.

This year the new Prime Minister said, ‘we will make Britain a country that works not for a privileged few, but for every one of us.’ In 2017 we will be looking to ensure that this includes the UK’s 12.9 million disabled people.

Next year we will continue to campaign for the Government to introduce reforms that support disabled people to find and stay in work, the protection of disability benefits and asocial care system supports disabled people to live independently.

 Read more of our policy blogs.

2016: a year in the life of the Scope helpline

In 2016,  the Scope helpline responded to nearly 20,000 requests for information and support by telephone, email and via Scope’s online community and social media networks. We also supplied answers to over one million requests for help and information via our website.

Your top 5 issues in 2016

Apart from wanting to know more about Scope, the top issues people contacted us about were:

  • Benefits and finance
  • Independent living
  • Social care and services
  • Transport
  • Employment

Funding the extra costs of disability

Unsurprisingly, the number one topic you ask about is benefits. To respond to this, we’ve employed an extra benefits and finance specialist  on the team.

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 8,100 benefits calculations and over 7,200 grants searches.

In 2016 so far, the calculations have identified over £319,000 per week in unclaimed benefits. This can make a massive difference to the lives of disabled people and their families, as this customer explains:

“Thanks to your brilliant advice, I have had some fantastic news. I applied for Attendance Allowance with the form on your website and I have been awarded £55.10 per week which will certainly be a big help to us. Thank you.”

We love it when we hear stories like this. Another customer contacted us following his failed application for Employment Support Allowance (ESA). Our benefits specialist provided supporting information so that he could conduct his entire appeal himself. He went through two tribunals and finally, after spending a winter without heating and using food banks, he eventually won. He received a backdated payment of more than £5,000 as well ongoing ESA payments to support him to live.

Just the job!

Another caller who was out of work applied for a job at a company signed up to the Government’s positive about disability scheme. He met the essential criteria but had received a standard rejection letter so he thought he’d been discriminated against. We spoke to him about how to challenge the decision. The company reviewed his application and admitted a mistake had been made and he did indeed meet all of the essential criteria. They offered him an interview and he got the job!

Our online community

As well as answering calls and emails, Scope helpline continues to play an active role in our ever-growing online community. We are investing more time in answering your questions online because we know that answers to one person’s query can help many others too. For example, one discussion has had over 12,000 unique page views, meaning that many more people are continuing to benefit from our expertise and advice.

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:

  • Technology in association with Abilitynet
  • Equipment with Which? (coming soon)
  • Independent living, updated by our new specialist in social care.

In 2017, we will continue to trial new ways to deliver information content with pilot videos on PIP assessments, PIP appeals and employing your own PA.

We’ll also be launching a new information product that will help guide people new to disability, like this caller to our helpline:

“After working within the corporate industry for over 20 years, I have recently become disabled and found the past 9-10 months totally life-changing. I’ve called various places and not received the help or level of service I have just been provided. I don’t usually do this but I really want to make a point to applaud the level of service and professionalism your helpline has. I felt as though I have been treated with dignity and pride, and not made to feel uncomfortable talking about my disability. So thank you again.”

Goodbye to Veronica

2016 also saw the retirement of helpline manager Veronica Lynch who has worked on Scope’s national helpline since it launched in 1990. She retired in April after 26 years’ dedicated service and won a national award for staff with a long-term commitment to their cause and who had made a positive impact to people’s lives.

We miss her but, more importantly, so will the people who have asked for her support over the years.

One parent, whose twins have cerebral palsy, said:

“I can honestly say that I don’t think I could have coped had it not been for Veronica and the helpline. They have given me so much time and support through all my difficulties and battles.”

Have a happy Christmas and New Year!

Thank you to everyone who has contacted us in 2016 and may we wish you all a Happy New Year.

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

Please note Scope’s helpline is closed 24 December to 28 December, and between 31 December and 2 January. 

Scope helpline receives no Government support: £12 can help pay for a call to the helpline this Christmas. Please support us if you can.

 

“This child is spastic. Take her home.” – Disability History Month

Dr Lin Berwick MBE, counsellor, lecturer, journalist, broadcaster, homeopath, Methodist preacher is 66. She is one of a number of older disabled people who contributed to the Disability Voices website at the British Library Sound Archive as part of Scope’s Speaking for Ourselves project.

For Disability History Month, Lin remembers how a doctor labelled her as ‘spastic’ and encouraged her parents to have another child. 

“This child is spastic. Take her home…”

When I went blind

Lin went to a school for physically disabled pupils. When she lost her sight, she was bullied.

“When I went blind, the kids at the school were really nasty and I went through some horrible jeering and bullying, and people laughing at me because I walked into things. You know, I went to walk through a door that had glass panels and, because I could see the light through I thought the door was open, and of course it wasn’t. I sort of smashed my face, and then I walked into a brick wall and things like that, and hit my face again and I had tripod sticks poked into, and walking sticks poked into my face and handfuls of mud rubbed into my face, and kids saying ‘Can you see that, then, Berwick?’ It was horrendous at a time when you’re really frightened, because you’ve now suddenly got a new disability which you don’t know how to handle.”

‘Telephonist required’

Lin Berwick on phone
Lin Berwick on phone

Finding a job was another barrier Lin had to face. 

“When I got to the bank, it was one of these banks with these horrible revolving doors, which wasn’t easy, going through on a pair of tripods. Eventually, I found my way into the bank, and made my way to the accountant’s office, and when he opened the door he, said, ‘Oh, I know they told me you were disabled’, he said,’ ‘but I didn’t realise you were that disabled, but you might as well come in and sit down anyway’, and I thought, ‘God, this is a really good start to your first job interview!’ But I thought, ‘Well, I’m here. I’ve got one chance, so I might as well really go for it’, and he took my mother around the bank, showed her some of the obstacles, and we came back into the office and we started to talk about the work, and he proceeded to ask my mother every single question about my training.”

Becoming a Methodist preacher

God's Rich Pattern: Meditations for when our Faith is Shaken
God’s Rich Pattern: Meditations for when our Faith is Shaken

Even in her spiritual life, Lin faced prejudice when she tried to follow her vocation and become a Methodist preacher.

“The Secretary of the meeting said, ‘I think we’re going to have a problem with you.’ I said, ‘Oh yes! Why’s that?’ ‘Well, due to your disability, I don’t know how you’ll cope with the public speaking,’ so I said, ‘Well, as someone who’s done over 300 radio broadcasts, I don’t think you’re going to have a problem.’ ‘Oh,’ and he said, ‘And I don’t know how you’ll cope with the academic study.’ I said, ‘Well, I have ‘O’ levels, and I have the equivalent of a degree in Psychology.’ He said, ‘Oh, you can learn then!’ and I thought, ‘God, if this is the kind of prejudice I’m going to get, this is just amazing stuff,’ and I said, ‘Yes, I can learn’ and he said, ‘And then we don’t know how you’ll cope with the access to the church buildings,’ and I said, ‘There, I’m prepared to admit you have a problem, but maybe together, we can work at it.’”

Listen to Lin’s life story on the Disability Voices website.

Books by Lin Berwick

Find out more about the Lin Berwick Trust.

Read the rest of our blogs for Disability History Month

I wish my dad had been able to see changing attitudes towards disability

Recent words from RJ Mitte and Alex Brooker have had a huge impact on Andy Bundock, whose late father was disabled.

In this guest blog he praises them for how they’ve been speaking about disability, creating acceptance and understanding that he wishes had been there in his dad’s lifetime.

During the Channel 4 coverage of the Paralympics in Rio, Claire Balding had a number of guest presenters with her. One of her co-hosts managed to explain exactly what Cerebral Palsy was in about three sentences. He managed to sum it up in such an eloquent and easy to understand manner. It was only afterwards that I found out that his name was RJ Mitte (apologies, I never got in to Breaking Bad).

I noticed his slight speech slur, this man clearly had Cerebral Palsy. It was very similar to my late father’s. It completely took me by surprise and I burst in to tears. Quite an extreme reaction you might be thinking. Here’s why.

It saddens me that my dad never got to see this

My initial reaction was “Yes, finally. Someone explaining it! And, on the telly.” Perhaps people will start to understand. I wanted turn to my dad and say “Look dad” but he wasn’t there, it didn’t happen in his lifetime. This saddened me so much, to the point of tears.

Not only was someone taking the time to explain a disability, there were disabled people presenting prime time TV and being accepted for who they are. My dad never got to see this. There was also the added emotion of missing my father. Hearing RJ speak in a similar manner just tipped me over the edge.

I contacted Channel Four and asked them if that clip was available so that I could share it on social media. I really wanted to share it and have more people understand. Unfortunately it wasn’t. But then Alex Brooker’s emotional outburst on The Last Leg happened.

On an episode of The Last Leg, Alex Brooker’s emotional outburst to the audience and to us at home had so much impact. He totally smashed it out of the park. When he drew that emotional breath at the end of it and got a hug from Josh Widdicome my heart went out to him.

Thankfully, this clip was available and when I went to share it on social media, I was so glad to see that so many of my friends had already shared it.

Alex did so much to make people understand what it is to be a disabled person that night. Only with more understanding can we move on together and gain more acceptance of people’s abilities as well as their disabilities.

My parents faced discrimination and ridicule

I grew up in a time where there was little or no mainstream understanding of cerebral palsy – what it was, how it affected people. Both of my parents have / had mild forms of the condition and were on the receiving end of discrimination and ridicule.

They were ‘advised’ not to have children, and it was nothing to do with their ability to conceive. Those bits and pieces were all working just fine. Their ability to raise a child was brought in to question. They also were asked to leave restaurants as they ‘were upsetting other diners’.

But my father was a real fighter. He stuck two fingers up at the world and said ‘I’ll show you’ every single day of this life. He said, I can make one of those and mine will be better.

The lack of understanding affected me too

A lack of understanding breeds fear, particularly in kids of school age so I was a target. I got in to fights and subsequently detention simply for protecting myself and my parents from nasty name calling and ridicule.

This upset me even more, the injustice of it all. I didn’t know how to handle it; I was a teenager struggling to deal with hormones, puberty and spots. But where was the protection from the school? I would very much like to think that this kind of behaviour is not tolerated in schools any more.

Andy's dad holding him as a toddler

My father was a brilliant dad

My father told me he was proud of me every day. He was a brilliant dad and I am so proud of his achievements as a father and as a person. He was an amazing photographer and inspired me to go into graphic design as a career. I got pretty good at it too, all down to his influence.

Alex Brooker mentioned his concern about how he would hold his baby should he and he wife be blessed with a child. This photo of my dad holding me was taken in about 1970. It is the only photo I have of the two of us – he was always the other side of the camera. You can’t keep a good man down, even when they are told that parenting probably wasn’t for them.

If you have a story you would like to share, get in touch with the Stories team.

Disability – the untold story behind the UK’s shocking levels of poverty

Last week The Joseph Rowntree Foundation published a report that suggested half of people living in poverty are either themselves disabled or are living with a disabled person in their household.

In this guest post Helen Barnard, Head of Analysis at the Joseph Rowntree Foundation looks the extra costs and challenges disabled people face in Britain today. 

In recent years, there have been many high-profile debates and scandals about disability – flawed work capability assessments, cuts to benefits, the stubbornly large employment gap.  At the same time, concern about poverty has also peaked at various times, notably in relation to the record number of people in working poverty and soul searching about the reasons for the Brexit vote in June.

Two reports this year have laid bare the extent to which disabled people and carers carry the burden of the UK’s high poverty rates.  In the summer we funded the New Policy Institute to write a report examining in depth the links between poverty and disability. This week JRF published our annual monitoring report which set these findings in the context of the overall picture of poverty in the UK over the last decade.

The headline finding is shocking – nearly half of people in poverty are disabled themselves or live in a household with someone who is disabled. That is 3.9 million disabled people and 2.7 million people who live with someone who is disabled. However, the real situation is even worse than this suggests

The disadvantage disabled people face

Disabled people face a triple disadvantage: they are less likely to be in work, they are less likely to have higher qualifications and they are more likely to be low paid, even when they do have good qualifications. Successive governments have focused on employment and skills as the routes out of poverty.  That makes sense for many families – getting into work and then improving your pay is the most reliable way to a better standard of living, although most families need to have at least one full time and one part time worker to escape poverty. But it is not yet working for the 3.8 million workers in poverty (up by a million in the last decade), or for many lone parents and households with young children or disabled members.

The second reason for the greater deprivation faced by disabled people and their families is that they face higher costs than non-disabled people. Scope’s Extra Costs work has highlighted life costs more if you’re disabled – £550 a month more. These costs can range from needing specific equipment or appliances, to having higher heating bills because of reduced mobility.  This means that the same income provides a disabled people with a lower standard of living than it would for a non-disabled person.  There are benefits intended to address this, but the analysis in our reports shows that these are not fully covering the extra costs – meaning that disabled people have to cut back on other essentials. .

Solving poverty

Earlier this year the Joseph Rowntree Foundation published our Strategy to Solve Poverty. This set out a detailed plan to solve poverty across the UK by boosting incomes and reducing costs, delivering and effective benefit system, improving skills, strengthening families, and promoting long-term economic group benefiting everyone. Many disabled people and their families face considerable challenges in achieving these goals – changing this should be at the heart of a drive to end poverty.

The Government is prioritising reducing the disability employment gap. Their Green Paper is a welcome start to this, but it also shows how much further it has to go to put together a concrete plan to ‘transform employment prospects’ for disabled people. In recent months, the Government has signaled its openness to change by ending the requirement for repeated testing of people with severe conditions and no hope of getting better.

However, far more fundamental change is needed. The planned cut to Employment Support Allowance for people placed in the ‘Work Related Activity Group’ should be reversed: people claiming this benefit tend to be out of work for far longer than those claiming Jobseekers’ Allowance and this cut risks tipping them into destitution. The Work Capability Assessment also requires reform, which should fully involve disabled people and incorporate a real world assessment of the type of work people would actually be able to do.

When Prime Minister May entered Downing Street she promised to create a country that works for everyone and to “fight against the burning injustices” of poverty, race, class and health and give people back “control” of their lives.  The Prime Minister will find it difficult to fulfil this pledge without a serious plan to enable nearly four million disabled people and their families to escape poverty and build a decent, secure life for themselves.

Visit Scope’s website to find out why life costs more if you’re disabled.

From callipers to climbing Ben Nevis – Disability History Month

Mountaineer and writer John Hawkridge is 68. He is one of a number of older disabled people who contributed to the Disability Voices website at the British Library Sound Archive as part of Scope’s Speaking for Ourselves project.

For Disability History Month, John remembers when he could run as a child and how in later life he tackled Ben Nevis.

Wearing callipers

John as a boy sitting on a step
John as a boy sitting on a step

Unfortunately for me I got selected to be fitted with iron callipers. So all of a sudden you find yourself in leg irons, and you know from being able to run, they’ve put you in these leg irons, and you can hardly stand up, never mind run. And they put you in them, and they tighten all the leather straps on you when you’re in. You know, it’s basically, it’s just a form of torture; they’re just forcing your joints against what they want to do. And so, you find yourself, you might be wearing your callipers ‘x’ amount of hours a day. Now bearing in mind I could take these callipers off and run, and run, hop, skip and jump, that weren’t something that I enjoyed at all.

Climbing Ben Nevis

John Hawkridge
John Hawkridge

By seven o’clock I was out and away, and heading up Ben Nevis. Initially there was no one else about, and I had the route to myself, but as time progressed it wasn’t long before people started overtaking me. Throughout the day I made really steady and positive progress, and up through a place known as ‘the Red Burn’, and then the massive, steep zigzagging path that went to the sort of summit ridge, or plateau, and then finally across this, where there were still snow and an ice field to be crossed towards the summit, and I ended up, I arrived on the summit about four o’clock. There were a few people there, and one that stood out was an American chap who, when he saw me coming, started dancing up and down, shouting, ‘What the Hell? I’ve flogged my so-and-so guts out getting to the top of this mountain, and what do I find when I get here? A so-and-so cripple. You’ve ruined my day.’ At which he screwed his stars and stripes up, shoved it back in his rucksack, and stormed off muttering to himself; ‘And I don’t know how the hell I’m going to get back down again,’ and I leant over and shouted to him, ‘That makes two of us!’”

Hear about John’s descent of Ben Nevis with broken walking stick and boot.

Rock-climbing films

In the mid-1970s I’d bought a good-quality Super Eight Cine Camera and had made films of some of the walks that I’d done and rock climbs; the two walks which I’d filmed being the Three Peaks of Yorkshire and the Dales Way – a 100-mile walk from Ilkley to Bowness on Windermere, and also I had some quite good shots of me rock climbing at Ilkley and Brimham Rocks.

In the late seventies I had been showing these films at various places, you know, if I had to entertain anywhere I’d take along me Cine and compiled a film and showed these films. And the fact that I’d been doing these activities had come to the attention of Yorkshire Television who sent a producer/director out to see me, with a view to making a film, and I remember well as he watched this Cine film, an half-hour film that I’d put together, and when it had finished he says, ‘This is absolutely fantastic, this is absolutely brilliant,’ he said, ‘but unfortunately we could never show this or make a film about this, because the public wouldn’t be able to take it…’

Climbing Everest

Books by John Hawkridge

Uphill All The Way book cover
Uphill All The Way book cover

His first book Sticks and Stones was published in 1987. This was followed by Uphill All The Way in 1991.

Listen to John’s life story on the Disability Voices website.

Find out more about Disability History Month on our website.

Tell the Government what you think about the support disabled people get

The Government want to know what you think about their plans for changing the support disabled people get in and out of work. Find out how you can get involved. 

They want feedback on their proposals, and will be accepting views until Friday 17 February 2017. Anyone can respond to the set of questions they are asking. We’ve set out information on how you can respond to the consultation with your views.

First, you might want to read Scope’s blog for more information on what is included in the Green Paper. The Green Paper is available on the Government website in Plain English, Easy Read, braille and BSL.

Why should you respond?

The Government want to hear from you about your experiences of employment support services, experiences at work and how you think they can be improved. This is your chance to tell the Government what you think of their proposals and share your experiences and ideas for how workplaces and employment support can be improved for disabled people.

The questions cover important areas such as how the Jobcentre can provide the right support, what employers need to do as well as the kinds of in-work support that disabled people would like.

What will happen to your response?

The Government will analyse all the responses they get and decide which of the proposals they should continue with. They normally release a document setting out key themes from responses where lots of respondents were in agreement. They then decide on their next steps – for example which proposals to amend and which to no longer continue with – and published a more detailed document about their plans. This more detailed document forms the basis of the new legislation with Government will pass to enact their changes.

Your response, or part of your response, could be made public although it wouldn’t be attributed to you by name.

What to think about when writing your response

  • Include evidence – Try to back up your responses to questions with evidence. Examples from your personal experiences are a valuable form of evidence.
  • Answer what matters to you – Don’t be put off by questions which aren’t relevant. You can respond to as many questions as you want, so choose the parts that matter to you. If you want to mention something not directly covered by one of the questions, it’s fine to add this in or say if you think the Government have missed an important area.
  • Keep it clear – Write as much or as little as you want for each question but try to keep your points clear and explain the background to any specific examples, such as the particular service you were using or trying to access e.g. Access to Work.
  • Suggest ideas – The Government are looking for better ways of providing support so if you have an idea about what would help you or how you would change the system make sure to suggest it.

How to respond

There are a number of ways you can respond to the consultation:

Responding online

The online consultation form is hosted on the Department of Health website. This shows a landing page with a list of options.

The first of these is called “About you” and is mandatory. If you are responding as an individual you should select the ‘questions for individuals’ which will bring up 33 questions. You can choose which questions to respond to.

Fill in the consultation form online.

Responding by email

You can also send an email with your response, with an attached Word Document to workandhealth@dwp.gsi.gov.uk.

Responding by post

You can post your submission to:

The Work, Health and Disability Consultation,
Ground Floor, Caxton House,
6-12 Tothill Street,
London,
SW1H 9NA

If you have any further questions please contact Melanie Wilkes, Policy Adviser on melanie.wilkes@scope.org.uk

A dinosaur isn’t just for Christmas! – “Christmasaurus” book review

As Christmas draws nearer, we’re getting into the festive spirit by getting stuck into a brilliant new Christmas children’s novel from bestselling author, Tom Fletcher.

Produced in collaboration with the disabled children’s charity, Whizz-Kidz, ‘Christmasaurus’ follows the story of William Trundle, a boy who uses a wheelchair, as he embarks on an extraordinary adventure with a very special dinosaur.

We asked writer and illustrator Dan White to review the book. He is the author of the brilliant Department of Ability comic book, featuring a cast of superheroes whose impairments are their greatest superpower. Keep a look out for the first book which is out in 2017.

I usually find that books for children that contain disability or a prominent wheelchair user fall into two categories. The first one is the “aww bless” category where the point is to generate a mood of sympathy, whilst the other is the “must educate the reader on the character’s disability”.

Thankfully a book has fallen into my eager hands. This is a book of such fun, majesty and colour that, even though its central character William Trundle uses a wheelchair, that’s not the overall arc of the story!

Disability inclusion

The “Christmasaurus” is a festive delight! Tom Fletcher writes with effortless wit. His musical skills are apt when it comes to the elves’ compulsive singing and the book was consumed by this proud dad in one joyful sitting. Yes! I am 44 and Scope asked me (a fellow writer, illustrator and dad of a basketball, book-loving 10-year-old wheelchair user) to review it! Unfortunately for my daughter, Emily, I got to read it before her!

Dan, a dad of a disabled daughter, reads a book entitled "Christmasaurus"

Mr Fletcher absolutely nails the issues and concerns of disability inclusion by having the discovery of William’s condition almost a full quarter of a way into the book. Even then you get a quick overview of Willy, his mum, dad and wheelchair that is snappy and refreshing.

The elaborate, layered storyline that opens the book combines dinosaurs, the end of the world, the ice age and Santa. This is all done with laugh out loud wit and pace. So much happens, so quickly. It’s so well written that you are lost in his magical world from page one.

Dealing with important issues

It is also refreshing how this hardback gem deals with the issues of family, bullying and loss. Nothing is straightforward and characters are well rounded. As you begin to boo, you then begin to cheer! Astounding!

Situations that involve bullying and disability are turned from what could be a “how awful” situation into a really funny one that all ages will get and chortle at. Yes, disabled kids DO get into funny situations (wider media world, take note) and Tom gives us refreshingly different family structures along the way – not just your typical mum dad and kids set-up.

This book is a gem. It’s illustrated beautifully and the pictures more than compliment the story. I have to admit I have a certain soft spot for the dinosaur. Without giving too much away, he is one of those quintessential characters who give you, regardless of age, a warm, winter, cosy feeling. He is probably my favourite character and he is brought to life, like all the other characters in your imagination, by Tom’s almost Dahl-esc writing and Shane Devries’ illustrations (jealous!)

Pick up a copy. It’s made to read out loud or just absorb with a permanent grin. From 5 to 55, it’s impossible not to want to take a Christmasaurus home with you to spend the big day with after reading this!

More please Tom (and not just at Christmas!). Right, here you go Emily, your turn to read!

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

Scope are giving away a copy of Tom Fletcher’s magical ‘Christmasaurus’ to three lucky winners. All you have to do to be in with a chance of winning this fantastic prize is visit this Facebook post and tell us about the most awkward Christmas present you have ever received.

This competition closes midday on Monday 19 December.

Full terms and conditions can be found on our website.

Scope exists to make this country a place where disabled people have the same opportunities as everyone else. Until then, we'll be here.

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