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

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

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

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

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

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

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

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

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

Work Capability Assessment

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

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

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

Employment support

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

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

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

Employers Driving Change

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

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

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

 

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

Access to Work

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

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

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

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

Statutory Sick Pay

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

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

What next?

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

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

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

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

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

Disability History Month 2017

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

Michelangelo

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

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

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

Pietà bandini by Michaelangelo
Pietà bandini by Michaelangelo

Francisco Goya

“Fantasy abandoned by reason produces impossible monsters.”

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

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

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

Frida Kahlo

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

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

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

Paul Klee

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

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

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

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

Paul Klee Halme 1938
Paul Klee Halme 1938

Henri Matisse

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

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

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

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

Yinka Shonibare, MBE

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

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

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

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

Stephen Wiltshire

“Do the best you can and never stop.”

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

Venice by Stephen Wiltshire MBE
Venice by Stephen Wiltshire MBE

Learn more about our What I need to Say campaign 

I had a good life but cuts to social care have left me completely isolated

Angela spent years looking for the right kind of social care and eventually she found it. For a while she enjoyed having complete control over her life and led a very active one at that. However, in the past few years, drastic changes to her social care have left her isolated. In support of our Christmas campaign, Angela is sharing her story.

My mum found out that I had cerebral palsy when I was two and a half. She took me all over the place to find answers and she was constantly fobbed off with “Oh your baby is just lazy”. When she did get the diagnosis they said, “She’ll never do anything, she’ll never speak”. Which wasn’t true and sadly it still happens to parents today.

But you can only thrive if you’re given the right support, and that’s often the biggest barrier to living a full life if you’re disabled. Something I know all too well.

Angela as a child on a blanket cuddling a big dog
Angela as a child

I was always searching for something different

I grew up in residential schools and when I became an adult the only option – other than living with my mother – was to live in a residential home. I hated the regimentation. There was no independence and hardly any choice. You had to get up at a certain time, do this, do that, you only had three choices for your meals.

We were very isolated. The nearest town was Colchester and that was 10 miles away. There were no opportunities, nowhere to go. There was a factory on the grounds so we worked there. I had my 21st birthday there, among all these people that I didn’t know. It was very lonely. I was always searching for something different but I didn’t know what it was.

Then, one day I came across an article about a place that had the vision that you might be disabled but it doesn’t mean you can’t own your life and live your life. This was the first time I’d heard that kind of attitude.

I managed to get a place there but it was scary to begin with. By this time, I was in my mid-30s and I was so used to people deciding things for me. Suddenly I had a lot of say in how I lived my life. I could choose when I wanted a bath, when I wanted to go to the toilet, I could go out quite a lot. It was life-changing.

Finally living as an equal

After a few years I took the next step and decided that I wanted to live in my own place. It took a while to sort it out but soon I was moving into my own flat for the first time. I had two support workers who lived in a flat upstairs and were available to support me 24-hours a day. Finally, I was living as an equal.

My support workers relieved me of my ‘disability’ by doing things that I physically couldn’t do and I was in control of what I did and when I did it. I could invite friends round and they didn’t have to get involved with anything – they just saw me as me and not a disabled person. But sadly, this new life didn’t last.

Angela in front of hills and a castle
Angela on holiday, something she used to be able to do with friends

Cuts to social care have left me completely isolated

I remember hearing there would be cuts and there were cuts. Over the last few years my social care support has changed dramatically and with it my life has changed for the worse.

The carers that come now only take me to use the toilet, prepare simple meals and do my personal care. I get half an hour in the morning, three quarters of an hour for lunch, half an hour in the middle of the afternoon, three quarters of an hour in the evening and half an hour around bedtime. It’s the same every day. Then I get 2 hours a week to do a shop and 2 hours for housework. It has completely taken away my independence and left me very isolated.

I can’t live a life now. I’ve lost many friendships. I can’t do most of the community activities I used to do. I can’t just get up and do things, be spontaneous. I have to think about the consequences of everything I do. I used to do a lot of campaigning but I can’t do that anymore. I virtually have no social life.

It’s a very lonely way to live. The social care system urgently needs to change. I have a right to live in my community as an equal.

Too often disabled people struggle to access the right emotional support, advice and information. As a result they feel like no one truly understands, leaving them disconnected and isolated from those around them. 

Please help us this Christmas by getting involved with our What I Need To Say campaign. Share the message, tell us your stories, and donate to Scope so we can be there for people who have nowhere else to turn.

Millions of disabled people feel lonely, including me – let’s change this

Shani is an events manager, disability campaigner and entrepreneur from Walsall. She features in Scope’s new What I Need To Say campaign which highlights the isolation that millions of disabled people face. In this blog, Shani shares her own experiences.

At certain times in our lives, we are all likely to experience loneliness. We often talk about loneliness in elderly people but, as Scope’s new research shows, loneliness affects so many disabled people.

This can be down to poor access to services, inaccessible transport and venues, and financial challenges. When you face so many extra costs related to disability, it can stop you from being able to go out and do things like everyone else. That’s why I launched the Diversability Card – a discount card for disabled people.

Social attitudes are also a significant barrier. Many struggle to see the person beyond the impairment or condition and act awkwardly. One in four people have admitted to avoiding conversations with disabled people because they worry about causing offence or don’t know what to say. This really astonished me. Personally, I feel sorry for the non-disabled UK population who are missing out on interacting with 13 million of us fabulous people!

With so many barriers to contend with, imagine being a disabled person, experiencing the same life transitions as everyone else, but not being able to participate in the same way. No wonder disabled people feel lonely.

My own experiences of loneliness

Being part of the ‘What I Need To Say campaign’ by Scope made me really reflect about the times I have experienced loneliness or isolation, which has drifted in and out of my life over different periods.

As a young child, I attended a special needs school which made keeping in touch with friends very difficult as we lived miles away from each other. It also meant that I was sent to a separate school that my siblings, cousins, friends and neighbours attended. Whilst it was the best place for me because of the care I needed for my condition, it was hard to maintain friendships and any sort of social life.

Over the course of my childhood, I spent a lot of time in hospital with broken legs due to my condition Osteogenesis Imperfecta (brittle bones). I would be in hospital for a minimum of three months at a time, missing school and home whilst only having adults to really talk to. I was very lucky that I always had lots of family coming to see me during the visiting time, but this is such a short amount of time in what used to seem very long days as a child.

I’ve also experienced loneliness as an adult, being excluded from social situations or activities due to my condition or people making assumptions about what I am able to do, or not. It’s really frustrating, especially as I’m a very independent person who will always find an alternative way of doing things.

Shani smiling, stood on a cobbled street

Ending loneliness

I feel that increasing the awareness of different conditions and dispelling misconceptions about disability are major steps in combatting the ‘silent epidemic’ of loneliness and isolation.

Also, if you are a friend or family member of a person with an impairment or condition, take a moment to consider how they might be feeling, especially around this festive time of year. It can be as easy as making a quick phone call or popping in for a cup of tea to brighten someone’s day.

Too often disabled people struggle to access the right emotional support, advice and information. As a result they feel like no one truly understands, leaving them disconnected and isolated from those around them. This is particularly heart-breaking at Christmas.

Please help us this Christmas by getting involved with our What I Need To Say campaign. Share the message, tell us your stories, and donate to Scope so we can be there for people who have nowhere else to turn.

Budget 2017 – so near and yet so far

The Chancellor today has announced the second Budget of this year and the first since the General Election. It was a deliberately low-key affair after a turbulent few months for the Government.

In this blog, we take a look at the impact that this will have on disabled people’s lives.

There was a much-needed announcement to Universal Credit which is a step in the right direction for disabled people. The seven-day initial waiting period for processing claims has been scrapped and the repayment period for advance payments has been extended from six months to twelve. Claimants will also be able to get a 100 percent advance now, rather than 50 percent.

However, as our helpline calls demonstrate, we remain concerned there are still fundamental problems with Universal Credit that were not addressed today.

The Government is failing to collect data on the number of disabled people claiming Universal Credit and their experiences. We know from our helpline that many disabled people are worried about what the shift to Universal Credit means for them and the loss of disability premiums means many disabled people will be financially worse off. With disabled people already paying extra costs of £550 a month related to their disability and less likely to have savings we oppose the loss of these premiums.

We need to see urgent reform

The Government has promised to get one million more disabled people into work by 2027. In order for that to happen, we need to see urgent reform to the Work Capability Assessment (WCA) so that it better identifies the barriers disabled people face to finding work.

With the Government expected to publish their response to the Improving Lives Green Paper shortly, we need to see ambitious reforms to support disabled people to find and stay in work. As well as reforming the WCA the Government need to look at what more employers can be doing to support their disabled employees and make sure schemes such as Access to Work are available to everyone who needs them.

Disappointingly the Chancellor did not take the opportunity to confirm that there will be no further cuts to disability benefits in this Parliament. We’d like to see the Government commit to protecting the value of vital payments such as Employment and Support Allowance and Personal Independence Payments.

A missed opportunity

While the announcement of more funding for the NHS was welcome, the Government has failed to act on social care again. The social care system is increasingly under pressure and while the Government has set out plans to consult on social care for older people it’s not clear what they’ll be doing to support the 278,000 disabled people who rely on social care for basic support.

Overall this Budget looks like another missed opportunity to improve the lives of the UK’s 13.3 million disabled people. With action needed to tackle the barriers disabled people face at work, at home and in their communities, we’d like to have seen the Chancellor be bolder.

If you have any questions or concerns about the changes made to your support, please call Scope’s Helpline on 0808 800 3333. 

Visit our website for more information on disability benefits.

I thought I was the only one feeling like this, then the responses started coming in

Ellie felt isolated as a teenager so she set up CP Teens UK to connect other young people and show them that they’re not alone. Sport has transformed her life too. After spending years being excluded from P.E. lessons at school, she’s now competing at a professional level.

In this blog, Ellie shares her story and tells us why she’s dedicated to making sure that no-one else feels alone, like she did.

I was diagnosed with cerebral palsy just before my second birthday and my parents were told I’d never talk, walk, or function in a ‘normal’ world. Fast forward 22 years, and I do all three and even more! I went through mainstream education, achieving GCSE’s and A-Levels, and most recently a BSc, even though my parents were once told this was ‘impossible’.

Although I coped well academically, school began to get a bit difficult for me when I was around 13 or 14. That’s the age when kids start to form cliques and reject anyone who is a bit different. I felt lonely a lot of the time.

And it wasn’t just the students; teachers would actively discourage me from joining in with things. When we had a P.E. class the teachers would look at me and say: “Shall we go inside and do some homework Ellie?”

At the time, I went along with it because I was so self-conscious. My cerebral palsy is very obvious when I move and I wanted to stay inside and hide away.

Ellie, a young disabled woman, smiling at the camera
Ellie felt less alone after she set up CP Teens UK

I wondered if it was just me feeling like this

I realised that there was nothing out there for people like me, both socially and in terms of going out there and getting opportunities. I didn’t have the confidence to go out and get a job, and my friends all went off to university and forgot about me.

I felt like I was the only person on the planet feeling like this so I set up a Twitter account in the name of ‘CP Teens UK’ thinking nothing would really come of it. Then, the next day I woke up to loads of followers including Francesca Martinez and Sophie Christensen!

The response was amazing. People were getting in touch saying, “I feel the same way, it’s so nice to find someone else.” I got so many emails like that I couldn’t believe it. It made me feel less alone. I’ve met some really cool people.

Since then I’ve set up a Facebook page and a website and it just grew and grew and CP Teens UK became a fully registered charity in March this year.

Then sport opened up a whole new world for me too

Because I was discouraged at school, I avoided sport throughout my life. I wasn’t even aware that there were opportunities for disabled people in sport. Then, the Paralympics changed everything. Seeing disabled athletes at the top of their game made me realise what was possible.

I saw something on Twitter about a Paralympics GB Taster Day and I went along to see what it was like. It was an incredible day with an amazing atmosphere. When it came to sports, I’d always heard: “No, you can’t do that, it’s not safe” but now it was all: “Come on and have a go.”

Sport transformed my life and now I regularly train and compete internationally. I have just been selected for the 2018 World Cerebral Palsy Games in Barcelona. Out there on the track, being watched by hundreds of people, I am in complete control. As a disabled person, I don’t feel that way very often. Being cheered on by so many people who are all on your side is a powerful thing.

Ellie Simpson races an adapted bike on a race track
Ellie competing in RaceRunning

Hopes for the future

It’s important to let people know that they’re not alone. I set up CP Teens because I wanted to connect other people who, like me, just felt a little bit lost and to tell them that they’re not the only people out there who feel isolated.

Now I want to connect people through sport too. I’ve just finished a degree in Sports Coaching and I organise events through CP Teens. Sport is something that brings people together and I don’t want anyone else to be left out like I was.

Too often disabled people struggle to access the right emotional support, advice and information. As a result they feel like no one truly understands, leaving them disconnected and isolated from those around them. This is particularly heart-breaking at Christmas.

Please help us this Christmas by getting involved with our What I Need To Say campaign. Share the message, tell us your stories, and donate to Scope so we can be there for people who have nowhere else to turn.

“I felt so alone last Christmas. I tried to be cheerful for Elise, but inside my heart was breaking.”

A few weeks before Christmas last year, Christie received a letter confirming her daughter, Elise, has cerebral palsy. Here she explains how isolated she felt and how she couldn’t stop worrying about her daughter’s future. Thankfully Christie reached out to Scope, and she found the support she needed.

You can make all the difference this Christmas. Please donate today to help provide another family with life changing support.

Whether or not you’re a parent, I’m sure you’ll understand why I wanted Christmas to be amazing for my daughter, Elise – especially after everything we’d been through.

Elise, who was born prematurely at 33 weeks, was really sick as a baby. She wasn’t meeting her developmental milestones. At nearly one, she wasn’t sitting up.

Just before last Christmas, I got a letter confirming Elise has cerebral palsy.

I was devastated – I thought Elise’s life was over before it had even started. I couldn’t stop worrying about her.

Mother holding her daughter looking concerned
Christie thought Elise’s life was over before it had begun

Would Elise ever walk? Would she go to school? Would anyone look beyond the wheelchair and see what an amazing little girl she is? Would she have any friends? Would she be able to get a job in the future?

I tried to talk to my family and friends, but I felt like no one understood. I ended up trying to hide my fears. That Christmas, I was in a dark place. Even though I was with people who cared about me, I felt completely alone.

Sometimes I felt like I wanted to lock us both away.

I was at my lowest point when I called Scope’s helpline. I was anxious all the time and I avoided other people. I didn’t want to take Elise out because I thought people would stare and ask questions. The first time I took her out in a wheelchair, I cried. It felt like everybody was looking at her.

I tried to be cheerful for Elise, but of course it affected her. At her age, most toddlers are going to playgroups and having play dates. But we weren’t.

It’s only thanks to people like you that things changed for us, because your gifts mean caring, knowledgeable people are just a phone call away.

Step by step, Scope has transformed the way I feel – supporting me to be the mum Elise needed.

When I called Scope’s helpline, I finally talked to someone who understood what I was going through. It meant the world to me.

Mother with her daughter playing looking happy smiling
Scope has supported Christie to be the mum that Elise needs

I’ve started to enjoy Elise’s achievements, instead of worrying about what other children can do at her age. When she started sitting up on her own, it was the most amazing thing I’d ever seen. I was so happy.

If I hadn’t called Scope, I would still be terrified of the future and I’d be avoiding going out. Elise would be missing out on so much. And the world would be missing out on Elise – she is such a happy, wonderful little girl.

This year, I’m actually looking forward to Christmas.

With Scope’s support, I’ve come such a long way – I can now look forward to something instead of fearing the future. This is a precious, life-changing gift you could give a family like mine this Christmas.

Thank you for reading, and Merry Christmas.

Mother with her daughter in front of a Christmas tree smiling
Elise and Christie are looking forward to Christmas this year

Christie’s story shows that lives can be changed for the better with the right support. With a donation today, you could help ensure Christmas isn’t the loneliest day for the 4000 families expected to turn to Scope for support over the festive period.

Donate today to support a family like Christie and Elise .

“There is still lots of stigma around mental health”

Today Scope has published Let’s talk, research on having conversations about disability at work. The research found that 48 per cent of disabled people have worried about talking about their impairment or condition with an employer.

Here, Gladys, who took part in the research and whose name has been changed to protect her identity,  talks about her experiences of employment. She is based in London and works in a school.

I was previously an Aid Worker with various charities for around 15 years. The work was sometimes arduous and required stamina as well as rigorous analysis. We worked very long hours in often difficult conditions. I was also involved in training other people from around the world. When I noticed that my memory was going and I was struggling with analytical thinking, I tried to continue as best I could including taking on ‘distance’ work based at home. Eventually even that became difficult and I didn’t know what to do. I was also in a lot of pain. But because the symptoms of my condition develop so slowly, it took nearly seven years to get diagnosed.

A few years after treatment had started I needed to get back to work as my benefits had been stopped after the first year, but I knew I couldn’t work full time as I had limited energy and so many medical appointments. I had been supported by the Job Centre, but they thought I was over-qualified for the stuff I was applying for. It was incredibly painful, because basically I was negating my career, and I had to ‘dumb down’ my CV. The fact that there was a break of a few years in my work experience didn’t help either. Due to my reduced energy levels, I tried to find work within a couple of miles of home so that the journey to work didn’t tire me out.

It was hard to get beyond the first interview

In one interview, with a call centre, I explained that I wouldn’t be off sick all the time; and that for example if I wasn’t in on a Tuesday, I would come in on another day to make up the hours. I thought this demonstrated my willingness to work. But they said, ‘Oh no, I would need you at this particular slot, because that is when the chair is available, we can’t be flexible’. A music school director rang me and said they had really liked me, and thought I was good, but they felt nervous about my condition and hospital appointments. I just wasn’t getting anywhere.

I wasn’t getting in through the normal channels and then I was advised by someone in the Job Centre that it wasn’t necessary to disclose, which proved to be valuable advice.  That’s how I got this job at a local Primary School. Whether the Headmistress assumed I’d taken a break for family reasons, I don’t know.  My qualifications were at the bottom of my CV and she reminded me that the job I was applying for was basically cleaning tables at lunchtime. But she didn’t probe further. She said that her main priority was that I would be reliable and turn up to work. I was relieved that I didn’t have to justify myself and I promised her that I would be reliable.

I am still at that school, working just four hours a day, four days a week.

I have never disclosed my disability

A couple of years ago I tried to increase the number of hours I worked and my grade but it was too exhausting and I had to stop after a year. During a chat with a teacher an early experience of teaching English as a Foreign Language slipped out and she identified a vacancy as a part time Learning Support Assistant. Although I preferred this work, I struggled to manage the 25 hours a week and I reverted to my former job, they found someone who could work full-time.

My former line manager was very friendly, and I tried to tell them I simply cannot work full-time, if I’m going to function in this environment.

I have never disclosed, but they know there’s a reason. I tried to say something once but decided against it because I was not sure how that might affect the dynamic in the office. I read that if you don’t need adjustments to be made to the workplace, then you don’t need to tell your employer. I don’t know if that is correct but if I don’t need to tell them, then I won’t. I am not yet psychologically strong enough to be surrounded by people who ‘mother me’.

Because I haven’t disclosed my impairment, I’m not sure what my rights at work are. I haven’t disclosed, because I wouldn’t have got this job if I had. It’s as stark as that.

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

People assume you are okay when maybe you are not

There’s still lots of stigma over mental health, I overhear negative comments from other colleagues. ‘So and so seems to be depressed – they just need to pull themselves together’. ‘So and so shouldn’t be doing this job if she feels that thing.’ I’ve heard that a lot. A couple of people know that I’m on anti-depressants but I usually keep quiet about it.

There was one colleague who started crying a lot. I went to comfort her and suggested that she speak to her doctor. She said that her doctor wanted to put her on anti-depressants and she was very worried about that. I told her that I’m on them. It seemed to help her to know that there was somebody else in her shoes.

It is important that disabled people are able to make informed decisions about if, when and how they talk about disability at work.

Based on the experiences of the people we spoke to, we’ve outlined ideas in our report for disabled people to consider when sharing information about their impairment or condition. 

Read more about our findings and recommendations and show your support on social media using #EverydayEquality.

Let’s talk: New research into disabled people’s experiences of talking about disability at work

Today Scope has published new research which looks at disabled people’s experiences of talking about disability at work.

We carried out a series of interviews with disabled people who are working. Some of those who took part had talked to their employer and colleagues about their impairment or condition, some hadn’t spoken about disability at work at all and others had shared some information with some people at work.

Below is a summary of our findings and our recommendations to employers and government to improve conversations about disability at work

Why is this important?

For some disabled people, talking about disability at work means they can start conversations about their support needs and how these may change over time. This can often be challenging for disabled people – two fifths of respondents in our research who asked for adjustments at work have felt uncomfortable doing this.

A graphic which shows a stat from Scope research. It reads "Two fifths of respondents who asked for adjustments at work have felt uncomfortable doing this"
Two fifths of respondents who asked for adjustments at work have felt uncomfortable doing this

In other cases, conversations between disabled colleagues can help create an environment where more people feel comfortable sharing information about their own impairment or condition at work.

Sharing information also allows employers to gather information about the experiences of disabled staff and helps them to develop a picture of how effectively they are recruiting, retaining and developing a diverse workforce.

By establishing an environment where disabled staff feel able to start conversations about disability, employers will be better placed to support their staff to reach their potential.

It’s important to recognise that some disabled people will have more choice over if, when and with whom they share information than others. However, this research has found that even among people who have a visible impairment, conversations about this and any support needs they have can have a significant impact on experiences at work.

Barriers to talking about disability

As many as 48 per cent of disabled people worry about sharing information about their impairment or condition with their employer. Some people who took part in the research had worried that telling their employer they are disabled may put their job opportunities at risk.

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

Others were concerned about how their manager or colleagues would react, and wanted to avoid negative comments, personal questions or pity.

Read more about Gladys’ experiences of talking about disability at work.

What leads to sharing information?

Many disabled people who took part in the project preferred to have conversations about disability on their own terms than responding to questions.

This included choosing who to tell, what information they shared  and when they shared it.

Positive and negative experiences of sharing information

Some disabled people had negative experiences when they talked about their impairment or condition at work.

These included feeling they hadn’t been listened to, or feeling as though they were being singled out as a result of the information they had shared.

For others, talking about disability had been more positive, and had led to them getting support to carry out their role.

For many disabled people who took part in the project, a positive aspect of talking about disability was that it opened up new conversations with disabled colleagues.

What needs to change?

We want to see employers review the way they gather information about their disabled staff. It is vital they take steps to make sure line managers know how to respond and offer support when staff start conversations about disability.

We’re also calling on the Government to improve the support available to working disabled people as well as employers. We want to see the role of the Equality and Human Rights Commission strengthened so that employers who discriminate can be held to account.

It is important that disabled people are able to make informed decisions about if, when and how they talk disability at work. Based on the experiences of the people we spoke to, we’ve outlined ideas in our report for disabled people to consider when sharing information about their impairment or condition. 

Read more about our findings and recommendations and show your support on social media using #EverydayEquality