No one expects to find out they have cerebral palsy at 60

Meet Paula, who contacted our helpline after learning she had cerebral palsy – at the age of 60. Until then, she had never received any kind of support.

In January 2015, soon after my mother died, my sister called me and told me I should see my doctor as there was ‘something I should know.’ I went to my GP and asked him to read me the medical notes from my birth. He told me that I had mild cerebral palsy.

I’m 60 years old, and I had known nothing about it until then.

My mother and I had not been in touch for 23 years, for many reasons. I will never know why she didn’t tell me.

There was more of a stigma around disability at that time, so maybe that was a part of it. Or perhaps she thought that because I didn’t need a wheelchair or anything, it wasn’t worth doing anything about. Sadly, attitudes still need to change.

Blaming myself

Not knowing about my cerebral palsy has made my life a lot more difficult than it really should have been.

My movements are awkward and slow, meaning I need extra time to do things. My speech also causes me difficulties. When I’m tired, it’s really hard for people to understand me – almost impossible if I’m exhausted.

Paula and her baby son
Paula and her son

But all my life I blamed myself for my differences, and thought I was just clumsy and slow. I drove myself into the ground trying to keep up at work, and that took its toll on me emotionally. When shown a job, it takes me longer to learn, and it often resulted in people getting annoyed with me.

I was never offered any extra support when I found things difficult. In one job, my colleagues would go home after they had finished their work, leaving me to finish my part alone. A supervisor once said she ‘felt like shaking me’.

I always tried to remain positive and upbeat, but it had a huge impact on my self-esteem and confidence. If I had known more, I think I would have stood up more for myself. And I could have asked for support with things such as my speech, which would have made a big difference for me.

Scope’s support

I rang Scope within a fortnight of finding out, and they sent Olli, a regional response worker, out to visit me. I thought she would have no time for me, but she came out the very same week. She said she had never met anyone who didn’t know about their condition until my time of life.

Olli has been fantastic, and having her information, advice and support has been excellent. With her guidance, I have sought out speech therapy, which has greatly improved my speech. I have also had physiotherapy and seen a continence nurse, and I have had rails installed in my bathroom.

Paula and her husband
Paula and her husband, who have just celebrated their Ruby wedding anniversary.

Life today

And just having this knowledge about myself has changed my life for the better. I feel much less agitated. I always felt I needed some kind of help, but I never knew what I needed or who to ask. I’m finally making up for lost time. I’ve now got the confidence to try new things; I go to Tai Chi, I swim and I am a bell ringer.

 I feel the things I have had to deal with in life have made me focused, determined and positive. I’m more aware of other people’s problems, and how they are feeling.

Excitingly, I’ve recently become a grandma. This got me thinking about my own experiences and how much things have changed. What happened to me – my disability being brushed under the carpet – I wouldn’t want to happen to any child today.

Our helpline is only possible thanks to donations from supporters.

You can help us be there for disabled people and their families by donating to Scope today. Your gift can support services such as our helpline, offering vital information and guidance to those who need it – whether 6 or 60.

Dear Mum and Dad of a newly undiagnosed child

Around 6,000 children are born in the UK each year with a genetic condition that can’t be diagnosed because it is so rare. These are called syndromes without a name. A proud mum who is a member of the Swan UK community has written an open letter to other parents of undiagnosed children.

Dear Mum and Dad of a newly undiagnosed child,

This Rare Diseases Day, I want to tell you that you are not alone. We are here, in our thousands, living amongst the mostly unaware. You are now a part of the undiagnosed community. I am guessing that you feel lost, bewildered and don’t know where to turn. We too have been through the shock and disbelief. You now have a child known as a Swan – Syndromes Without a Name.

No-one knows what the future will hold.

I will never forget being told that 9 out of 10 children presenting my child’s array of challenges remain undiagnosed. It was confusing and incredible that in the world of modern medicine, undiagnosed was even a thing. I was in denial, googling frantically, unable to accept there was no answer. Yet, we are still here six years later. The living proof. I can honestly say that we have never reached the point of acceptance, we search hard for that elusive diagnosis.

Please believe me, our life is lots of fun. Every down turns into an up. Our child is an inspiration who continually reminds us what is truly important in life. It will become easier to live with, I promise.

There are many positives.

Without a label, no-one will set a limit for your child. They are free to reach any milestone without hindrance. No-one knows what the future will hold. Hold tight to the hope and don’t let anyone take it away. Many of us have experienced the joy of our child exceeding medical and developmental milestones and, believe me, it feels like magic.

Your child is unique. This will create an incredible bond between you, no-one will know your child like you do. Medical professionals will turn to you for an insight into your bundle of joy. Any siblings will be equally special and treasured in a way you can only describe. The love of a Swan unifies a family.

It won’t always be easy.

I should, however, warn you that you will plummet into the world of genetics. It will baffle you, it still does me. One tip, unless you are a scientist, don’t buy ‘Genetics for Dummies’ – I couldn’t get past the first few pages. Progress in genetics is nothing short of fascinating. There is a good chance in your lifetime that the ultra rare disease your child has will be identified. When that moment arrives, your reaction will be mixed – excitement, relief, not being sure if you want to know. The possibilities for future treatment and therapies and the opportunity to meet others with the same condition will hopefully follow.

I can guarantee that you will be welcomed with open arms into the Swan UK community. It’s a generous and caring group. We cry as one and laugh together – there is always someone who has had a similar experience. It’s a virtual listening ear sprinkled with a few regional get-togethers to meet up in person.

It won’t always be easy. There will be tough times ahead. It will take time to come to terms with the absence of answers but make sure you take time to enjoy your child. Focus on the positives and always remember, you are not alone. We are here in our thousands supporting each other.

Best wishes,

A proud mum

Visit SWAN UK’s website to find out more about the work they do.

You might not think it, but up to 30 million people may be affected by one of over 6000 rare diseases. Carole Villiers’ son Dexter is one of them. Read Carole’s blog where she shares the story of Dexter’s Angelman Syndrome diagnosis and how it changed her family’s life. 

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.

Through The Eyes of Me – Writing a book for my autistic daughter

Jonathan Roberts has written a story book about his daughter, Kya, who was diagnosed with autism. After a great reaction to his book from Kya’s family and the professionals who work with her, Jon is hoping to publish it as a paperback.

Getting a diagnosis

We adopted Kya at 17 months old. We realised fairly soon that there were differences between Kya and other children of her age and we initially put this down to post adoption attachment issues. Kya’s Health Visitor raised her concerns and referred her for an assessment with regards to her development delays which resulted in a diagnosis of severe autism.

As Kya’s parents we’re blessed –  she is a lovely, placid happy child and I wanted to capture her lovely little quirks before we forgot them so I started to record them. I started writing things down and showed my wife Sarah. She liked them and we thought it might make a little book.

When Kya started mainstream school, the children in her class asked the teacher questions about her, like:

“Why is Kya allowed to run around?”

An illustrated page from Kya's book. The text reads: I am always on the move. I don't care for sitting still. I love running.

Kya has lot of energy and finds it difficult to sit still. It’s hard for us to keep up with her sometimes, particularly when we are out shopping and we forget her rucksack with reins. Luckily, we live near some long, sandy beaches and open spaces where Kya can run around in a relatively safe environment but we still have to keep our eye on her all the time! She doesn’t understand danger so she’s always climbing stairs, railings and on top of kitchen work tops. It can be very tiring!

“Why won’t Kya talk?”

She has difficulty concentrating and finds it hard to communicate. She has delays with her speech and often babbles but she is learning a few words now. When we read the book to her, she points and says, “Kya!” and looks at me for approval. She loves looking at the book but she has a tendency to rip things up, it is like her sign of approval, as if she is multiplying things as opposed to destroying them.

Picturing a book

And illustration of Kya and her Dad swinging her aroundI wanted to create a nice, pretty looking and simple to read book explaining her differences and beautiful quirks. I wanted the book to be illustrated simply yet beautifully.  We got in touch with Hannah Rounding, who was spot on with her pictures even though she had never met us!

We hope Through the Eyes of Me will help siblings, classmates and anyone who knows of someone on the autism spectrum.

Through the Eyes of Me will be published by Graffeg on 24 August.

Pre-order the paperback and add ‘Scope’ as coupon code to get a 20% discount on the normal price of £6.99.

Check out our Pinterest board of kids books for siblings of disabled children.

Reform is needed to halve the disability employment gap

The Government’s Green Paper consultation on Work, Health and Disability closed last week. Find out how we responded to the consultation and which areas we argued need action from the Government.

The Government has made a welcome commitment to halve the disability employment gap – the difference between the employment rate of disabled people and non-disabled people – which has stood at around 30 percentage points for over a decade. If the Government is serious about increasing disability employment, then it must tackle the barriers individuals face to entering, staying and progressing in work.

Improving out-of-work support

Too many disabled people aren’t getting support to get into and remain in employment. Where disabled people do access support, at Jobcentres or through employment support schemes, many feel it is too generic and does not take account of their needs or interests.

It is vital that all disabled people who want to work have access to voluntary, specialist support that is tailored to their needs. Taking part in any form of employment support should be completely voluntary for disabled people, and have no impact on the financial support they receive.

As well as this, Scope wants to see a total reform of the “fit for work” test, the Work Capability Assessment (WCA), which decides whether someone is able to receive Employment and Support Allowance.

Currently, the WCA fails to capture the range of barriers to work that disabled people face, which means many individuals are not getting the right support to move in to work. That’s why we’re calling for the WCA to be replaced with separate assessments for financial support and employment support needs.

Supporting disabled people in work

New research by Scope has found that in the last year 58 per cent of disabled people have felt at risk of losing their job because of their impairment or condition. That’s why it’s so important that once disabled people take up jobs, the right support is in place to enable them to stay in work.

Something we want to see is an expansion – and better promotion – of Access to Work, a scheme that provides disabled people with financial support to work. We also want to see the requirement to take Statutory Sick Pay in consecutive blocks to be lifted. This would give individuals more flexibility in taking time off from work, for example through part-time sickness absence or a phased return to work.

Working with employers to drive change

Efforts to halve the disability employment gap will only be successful if we see a shift in how disabled people are perceived in the workplace. The need for action is clear – 85 per cent of disabled people feel employer attitudes haven’t improved since 2012.

Building on progress made with other aspects of workforce diversity, employers should shift from compliance with the law to taking a more proactive approach to attracting, recruiting, supporting and developing disabled employees.

For instance, the Government’s Disability Confident scheme – which provides guidance to employers on hiring disabled people – has a Business Leaders Group which is well-placed to drive best practice among employers through new research and peer-to-peer networking. However, it is crucial that this group has sufficient scope and capability to realise such an ambition.

Next steps following the Green Paper

Scope welcomed the opportunity to respond to this Green Paper. However, this will only lead to change if Government and employers take meaningful steps to tackle the barriers disabled people face to entering and thriving in work.

Therefore, we would like to see a cross-government strategy for disability employment – presented as a White Paper – as soon as possible. This should include a range of reforms to support disabled people in and out of work, along with clear indicators to determine the success of these. It is vital that any proposals are informed by the experiences of disabled people.

Find out more about Scope’s work to tackle barriers to employment for disabled people.

Joan Ross: A life remembered, 1939 – 2017

Joan Ross, a contributor to Scope’s Speaking for Ourselves project, died in January. Born with cerebral palsy in 1939 (when disabled children didn’t have to have an education), she went on to become  a language teacher, girl guide leader, advice officer for 17 years at Haringey Disabilities Consortium and a published author.

Using extracts from her interview in the British Library Sound Archive, we celebrate her life.

Going to schoolJoan as a child in a black and white photo

“My mother took it for granted that I was entitled to education like everyone else… She wanted me to be able to read so that I could read to myself and so on. She saved for me to go to a little private school very near where we lived, but they refused to have me so she tried the local infants school that was all on one level, and they were very reluctant. The headmistress did want to take me, she was willing to have me, but the education authority weren’t happy about me going and I didn’t have to go to school; it wasn’t compulsory.

So my mum decided to go to the education offices every day to ask them when they were going to find a place for me at this school she had in mind, and one day when she went she heard one of them say, ‘That Ross woman is here again’, and so she said, ‘Yes. And I’ll be here again tomorrow until you offer me a place for my daughter at school’.

So they did agree to place me in the school that she’d chosen, on condition that she came there and took me to the toilet twice a day, maybe more, fed me at lunch time; the teachers would teach me but nothing else, no personal care. But she was willing to do that and I was very happy there.”

Brownies and Guides

“We had a uniform which made me feel one of them. Our school icwbicc-24didn’t have a uniform so I enjoyed having an identity. I enjoyed the badge-work in Guides because that was way of proving myself.

“We didn’t really take a lot of exams and that at school, so this was a way of stretching myself and proving myself. The Guides, once they realised that I was just the same as them, except I was in a wheelchair, accepted me and I really felt one of them.

“After I left school. I was still in the Rangers, the senior part of the Guides, and one of the things the Rangers did was help with Cubs and Brownies, so I was delighted when I was asked if I would like to help with a Brownie pack, and I did that for about a year, or maybe longer. And then my own church Brownie pack was without a leader and I longed to offer to take over the pack but I didn’t want to do that because I didn’t want to be turned down. So I was delighted when I was approached to actually do that, and I did it for 15 years.

And it really compensated for not working because it gave me an important job to do which took a lot of time but was very worthwhile.”

Looking for work

“I kept on looking out for jobs. I went to a few interviews and some of them were better then others, but nothing very promising.

“There was nobody to advise me. I went to the job centre to see a disablement resettlement officer, but she really didn’t seem to have a clue how to help me. And so I just looked up jobs and I wrote to the Director of Social Services in Haringey and I did have an interview, which looked quite promising…

“They wanted to set up an advice and right centre for handicapped people in Islington in the day centre, which would deal with telephone enquiries on benefits and also lots of problems relating to disability.

“And I applied for that job and got it and it was an amazing experience.

“I wasn’t teaching but I was helping other disabled people and
carers and expanding my knowledge all the time. I went on training courses and the project was managed by the Citizens’ Advice
Bureau so we were able to go to their training courses as well.

“And the scheme lasted the year and… they hoped that they would get more funding for it to continue but when the year was up no funding materialised, at a time when the centre – it was called ARCH [Advice and Rights Centre for the Handicapped] by the way – and it was really making very good progress and helping a lot of people, and we just couldn’t abandon it because the project wasn’t being
funded. I had another worker – there were two workers on the scheme – the other person was disabled as well, he was called Melvin, and we decided to carry on working for ARCH voluntarily for another year.”

Joan’s commitment to her community then led to her being an advice officer for 17 years at Haringey Disabilities Consortium.

To hear Joan’s interview in full, go to the the Disability Voices website at the British Library Sound Archive.

Joan Ross and Lynda Bellingham
Joan Ross and Lynda Bellingham at the launch of Joan’s book

Read Joan’s autobiography, I Can’t Walk, But I Can Crawl.

 

I want employers to be able to talk to me about my needs

Holly moved to the UK from America over 10 years ago. Being blind, she has experienced many challenges in finding employment.

Here she talks about some of those challenges, bad attitudes she has experienced and what she thinks needs to change to ensure that disabled people have the same opportunities as everyone else.

My first proper job over here was as a nursing assistant on a psychiatric hospital ward. Before I could start, I had to have an occupational health assessment. The woman in the assessment knew that I was visually impaired and she was asking me lots of questions like, ‘how would you see if someone threw something at you?’ and stuff like that. I obviously wanted to say I can see stuff like this but didn’t want to reply sarcastically because the job depended on this.

At the time, I had just moved to the UK, which was very expensive, and me and my husband had no money between us. It was so important that I got this job. We were just living day to day and having to borrow money which was just so miserable. I didn’t want to say anything wrong or make the assessors get mad at me or anything like that.

Holly, a young disabled woman, poses with her dog

It was worse than weird

The assessment was just really confusing. She kept asking me about medical records that I didn’t have any of over here. When she suggested that I should get my medical records sent from the US over to here, I didn’t know whether me getting the job depended on this happening.

Towards the end of the assessment, the woman pointed out that my shoelace was untied and I kind of nodded but thought it would be rude to interrupt the conversation to sort it. Before I’d even had a chance to say that or tie it myself, she leant over and did it for me. She actually tied my shoe for me!

It was one of those things where I just thought, I need to leave before I do or say anything! At the time I thought it was weird. But it was worse than weird. It was condescending and so horrible. It really didn’t imply anything good about what this woman thought of disabled people.

When I got home, I was just really confused and my husband was really upset on my behalf. He didn’t think that I was treated very well.

It was such a stressful time

After all this, I got the job and, because it was such a big hospital, I luckily never had to see her again after that! Unfortunately, this was only a one year contract and due to various reasons, it made me very ill and stressed. This resulted in me having over two years of job hunting and applying for ESA.

Looking for work was such a stressful time. It felt like I already had a full time job sorting out ESA. It was more exhausting than any job I’ve ever had and was just a total nightmare.

Not only was I foreign and disabled, but my qualifications were from a different country and I also now had a massive hole in my CV.

Sometimes it’s hard to separate what’s an effect of being an immigrant and what’s an effect of being disabled, but I think both of these things make employers look at me and say “there’s somebody else who’s easier”

Disabled people aren’t scary!

I think employers need to not be scared! I want them to be able to talk to me about disability.

If an employer could just ask us what we need or what they could do to make it possible for us to work there, everything would be so much better.

It should be ok to ask these things. Disabled people are less work, less scary and much less of a burden than employers think we are. I think there needs to be much more of a willingness to talk and more assurance for disabled people that there won’t be any nasty consequences of asking for what you need, that if you say the wrong thing, you won’t get the job.

I’m not that difficult to give a job to. Honestly!

Holly, a young disabled woman, smiles at the camera

The Government want to know what you think needs to change about the support disabled people get in and out of work. They want feedback on their proposals and will be accepting views until Friday 17 February 2017.

Why we need to see changes in support for disabled people in work

Today we are publishing the findings of a poll which asked disabled people about their experiences of looking for work and being in employment. 58 per cent of disabled people have felt at risk of losing their job because of their impairment.

Tomorrow new statistics will be published that will unveil the size of the disability employment gap. This is the difference between the employment rate of disabled people and non-disabled people, which has remained at around 30 percentage points for over a decade.

The Green Paper on Work, Health and Disability was launched in October and outlines the Government’s thinking about the future of employment support. The accompanying consultation provides an excellent opportunity to feedback on the document and shape future Government policy but closes at the end of the week.

New findings on disabled people’s experiences in the workplace

We surveyed over 200 working-age disabled adults in employment and uncovered that 58 per cent of disabled people have felt at risk of losing their job because of their impairment. To address this, we would like to see Government introduce a new flexible approach towards sick leave and the Equality and Human Rights Commission publish a new code of practice on workplace adjustments.

Text reads: Fifty eight percent of disabled people have felt at risk of losing their job because of their disability
Source: Scope polling of 216 working age disabled adults in employment in England, December 2016

Our research also unearthed how one in five disabled people surveyed (18 per cent) had requested support or an adjustment but their employer didn’t provide them. Employers are legally required to try and make adjustments to support disabled people in the workplace. One in four disabled people (24 per cent) say their current employer does not support them to do their job.

Scope would like to see schemes which support disabled people in work, such as Access to Work, better funded and publicised so that employees and employers are more aware of their benefits.

Workplace bullying or harassment

Text reads: 53 per cent of disabled people have experienced bullying or harassment at work
Source: Scope polling of 216 working age disabled adults in employment in England, December 2016

Our research revealed that 53 per cent of disabled people have experienced bullying or harassment at work, 21 per cent of disabled people had been bullied by colleagues and 27 per cent had experienced bullying from their employer. One in five (21 per cent) go as far as not disclosing their disability to employers, whilst one in eight (13 per cent) of those disabled people we spoke to felt they had been overlooked for a promotion.

Government are rightly focussed on removing barriers to get more disabled people into work, but the barriers that prevent people from progressing and advancing their careers, once in work, must also be addressed. The Green Paper highlights the importance of working closer with employers and changing attitudes towards disability, so it’s important the Government improve conditions for disabled people in the workplace.

Government consultation on disability employment 

Scope want to see the Government deliver on its commitment to halve the disability employment gap and to deliver a strategy that tackles the barriers disabled people face to entering, staying and progressing in work.

The Green Paper is an opportunity for disabled people to share experiences of being in and out of work and feedback on the Government’s plans. At Scope, we think there remains a huge amount of work to be done to tackle the barriers disabled people face entering and staying in work. It’s vital that the whole Government now listens to disabled people’s views on how to do this.

Read more about how you can respond to the Green Paper consultation

The Green Paper doesn’t pay enough attention to the barriers that disabled people face

Having been born deaf, Natasha has always been interested in equality and social justice. She currently works as a photographer as well as an equalities consultant at Disability Wales/Anabledd Cymru. In this guest post Natasha gives her view on the Government’s plans for changing the support disabled people get in and out of work.

The UK Government has published the “Improving Lives: Work Health and Disability” Green Paper. This document highlights the issues of the disability employment gap, access to healthcare and employment support for disabled and people with long term health conditions.

There is much that can be said about the Green Paper, both bad and good.

Taking a medical model approach

The language of the Green Paper is very medical model and highly individualised. The social model of disability says that disability is caused by the way society is organised, whereas the medical model used here, says people are disabled by their impairments or differences.

Natasha smiling for the cameraIt is also a forceful advocate of the “work is good” mantra. They take care to qualify that by saying ‘good’ work, but most disabled people will be aware that the opportunities for good and meaningful work are far fewer for us. It isn’t simply a case of disabled people trying harder, taking pills or going to physio in order to be ‘fit to work’. It often feels that this is the focus of the Green Paper.

This serves to depoliticise disability and that is dangerous for us. We are not disabled by our impairments or health conditions, we are disabled by the external barriers and attitudes in the world around us. That is political. No one individual can change that. It takes all of us together as a political movement to challenge and change those barriers.

What isn’t included in the Green Paper?

Opportunities to work are heavily dependent on many other factors which are barely mentioned in the Green Paper. Do we live in accessible and safe housing? Do we have access to transport to get us to work and back? Are education and skills training opportunities accessible to us? Do we have appropriate support, whether in the form of PAs, social services or appropriate and timely healthcare?

If our most basic needs aren’t being met, the stress of just trying to get by from one day to the next is considerable. How then, are people to cope with the additional stress put on them by a benefits system which isn’t designed to accommodate their needs?

My view is that the Green Paper doesn’t pay enough attention to these extensive but often subtle barriers that disabled people face, whether in work or out of work.

Challenges for disabled people who want to work

For disabled people in work and for those who want to work, there are a range of issues. Do employers understand the importance of reasonable adjustments? Do they value the skills, experience and perspective that disabled people bring to their workforce? Do Jobcentres and Access to Work provide enough support? The answer for many is a clear “no”.

Negative attitudes towards disabled people are a problem, and one that the Government has arguably perpetuated in recent years. A huge culture change is needed to shift the views, aspirations and opportunities focused on disabled people.

The barriers we face go beyond access and attitudes to disabled people. We live in a culture that serves the employer and the profit margin. This is a culture that has created the growth of zero hours contracts; of low paid workers taking multiple jobs just to pay the rent and put food on the table; of a culture that values unhealthy presenteeism and excessive working hours. In short, society values money and not people.

Society values disabled people even less. When discussing disability, I so often find myself saying “if you improve the situation for disabled people, you improve it for everyone else too.” It is a point that too many still fail to understand.

An opportunity to influence change

On a more positive note, the Government is saying “here are some of the issues we’d like to address and we recognise we don’t have all of the answers”. That at least presents disabled people with an opportunity to influence change.

The lived experiences of disabled people are crucial in influencing change. It’s going to take a considerable effort by the Government, the Department for Work and Pensions and others to make good things happen for disabled who want to work. It’s going to take even more effort to create an environment where disabled people can trust the ‘system’ to be there to support and not sanction.

Please take the time to provide feedback or respond directly to the consultation. There are a number of ways you can do this.

To make the world of work better for disabled people, it needs to be better for everyone and there are bigger issues that sit outside of the remit of this Green Paper.

Take part in the Green Paper consultation which closes this Friday 17 February, and tell the Government what you think about the support disabled people get.

Why can’t the romantic hero be disabled?

Ellie Darkins is a romance author who has been published by Mills and Boon, Crimson Romance and Harlequin Books. Her latest book, ‘Holiday with the Mystery Italian’, features a disabled business tycoon as the romantic lead.

In this blog, Ellie talks about where the idea of including a disabled person came from, where she did her research and what she hopes the book will achieve.

With Valentine’s Day just around the corner, it’s my pleasure to bring a little romance to the Scope blog! I write romance-packed novels for Mills & Boon, and my latest hero, the gorgeous, glamorous, gold-medal-winning Mauro, also happens to use a wheelchair.

I didn’t set out to write a hero with a disability. The early ideas for this book all centred around the concept of a couple meeting on a dating show, and from there I started thinking about who might be tempted to give that sort of experience a go, and why.

I always envisioned my hero as someone who is up for any challenge and any adventure, and it was when I started digging into why he was like this, it became clear to me that he had had some sort of accident in the past that made him not want to miss out on anything in life. That’s when it occurred to me that he could still be living with the physical effects of that accident, as well as the emotional ones.

Ellie Darkins, a romance novelist, and her family stand in a line whilst smiling and all holding up Ellie's disabled brother who is laughing
Ellie and her family laugh whilst holding up Ellie’s brother

Doing something different

Once it became clear to me that my hero had a physical impairment, I had some big decisions to make. When I read some other romances with disabled characters, I found some beautiful, touching stories. But in most of them, the impairment was a key part of the character’s journey. I knew I wanted to do something different – to write a character whose disability isn’t part of the story. A good romance is packed with conflict, with plenty of barriers standing between the hero, the heroine and their “happy ever after” – but I saw no reason for Mauro’s wheelchair to be one of them.

They say “write what you know” and in this case, I’ve been able to draw from a real-life example of someone who lives with a disability without letting it define them. My brother has had chronic lung disease since birth, but (while I have no desire to know the details!) it has never been an issue in his dating life. What it does do, occasionally, is throw up practical issues, such as the time my family nearly missed a flight home from Italy while the airport security staff tried to decide whether they would allow his oxygen cylinder onto the flight. They decided they would, but took so long that everyone had to run to make it to the gate in time.

Making Mauro as real as possible

Researching the practicalities of Mauro’s disability was an important part of writing the book for me. While I didn’t want his wheelchair use to be a big part of the romance storyline, it was important to me to try and portray Mauro’s life in a way that reflected the experiences of his real-life counterparts. I was in the privileged position of being able to give Mauro a bank balance that helps overcome many challenges, but even his billionaire lifestyle can’t get rid of all obstacles or remove all ignorant people from his path.

I hope Mauro and Amber’s story has done justice to the everyday challenges of the many wheelchair users who have shared their stories on this blog and elsewhere, and to whom I owe a debt of gratitude.

With Scope’s own Twitter poll revealing that three out of four people would like to see more representations of disability in literature, I hope that you’ll welcome Mauro’s story, and be as open to falling in love with him as I was.

Ellie Darkins, a romance author, smiles at the camera

Scope have been looking into the lack of disability representation in literature during National Storytelling Week. We hope that many more publishers and authors, like Ellie, include better representation of disabled people in books.

Visit Ellie’s website to find out more.

On Saturday 11 February, we are also giving you the chance to win one of two copies of ‘Holiday with the Mystery Italian’, find out more on our Facebook page.