Tag Archives: Work

“This is why I fight to overcome barriers to employment for disabled people.”

Max, a writer and Disability Gamechanger, writes about the challenges he faces finding employment as a person with autism.

I choose to fight for the voices of others on the autistic spectrum. Through my own efforts to find work and my writing, I aim to show that those on the autistic spectrum can play an important role in the workplace and indeed, society.

As someone who has a deep passion for social issues and strongly believes in the concept of society, I want to contribute to society through employment. And yes, I do realise that means paying taxes!

All I need is a bit of patience

Along my personal journey, there have been many positive experiences as well as challenges and people who have believed in me. I recently undertook a placement at a very inclusive and welcoming PR marketing agency in Barry, Wales. Here I was given the patience and understanding to build my confidence and work at my own speed. I am also working part-time with an education technology start-up to help develop kids and adults digital skills.

The main barrier for me in the past, and one which I still sometime face has been interviews. I often struggle to express all my strengths in the pressurised situation that is a job interview, and as a result I feel that employers only see my anxiety.

Though I recognise that verbal communications skills are important in marketing and any other employment sector, I know that once I settle into an environment I can achieve anything I set my mind to! All I need is a bit of patience.

One of the biggest impacts that such barriers have had on me are feelings of isolation and loneliness. I am sure these are feelings which are shared by many others in the disabled community.

A young man smiles with his dog
Max at home with his dog

Everybody has value to add

To achieve progress, I believe there should be a greater focus from employers on what  disabled people can do, not what they may find difficult at first. Just as everyone has their own weaknesses, everybody has value they can add to a team.

Creating an environment where all abilities thrive, enabling a wide range of talent, is key. Similarly, creating interview processes which are flexible and allow this talent to shine, I believe can be a positive step forward.

Take those with autism, for example. We are creative, focused and have attention to detail. These are all positive traits which can be valuable within a team.

By creating more diverse teams, this means that more organisations will have the ability to represent their customers and society. Surely, this is something we can all agree is a good thing.

It is time that we focus on ability, not disability.

Half of disabled people feel excluded from society and many say prejudicial attitudes haven’t improved in decades.

We know there is still work to do until all disabled people enjoy equality and fairness, so we all need to work together to change society for the better. 

There’s something everyone can do to be a Disability Gamechanger so get involved with the campaign today to end this inequality.

Will you be a Disability Gamechanger?

Today, Scope launches a new campaign to tackle disability inequality head on. Head of Policy, Campaigns and Public Affairs, James Taylor, tells us why it’s an issue we all need to get behind.

“Negative attitudes, poor access to support or transport, limited opportunities for work.

Disabled people tell us that these things matter. They lead to discrimination, to prejudice and to being seen as an afterthought.”

“The things that people say to you never go away. There have been times where bad attitudes have made me ask, what’s the point?” – Marie

“People with invisible impairments still struggle for people to ‘believe’ their condition is real.

On buses, trains and planes we’re often denied equal service and equal treatment.

When we want to go on a night out, the disabled toilet is often an extra storage cupboard, because we’re not thought of as customers.

Hear from some of the storytellers in this film, highlighting the barriers disabled people face in their day-to-day lives.”

The scale of the issue

“Our latest research shows how many disabled people feel and experience this.

We spoke to disabled people right across Britain to find out about their day-to-day lives – what makes them happy, what angers or frustrates them and what they want to get out of life.

We wanted to understand what equality means to disabled people today, and we wanted to start from what disabled people think and feel, and how important independence is to them.

Overwhelmingly disabled people told us they want to be independent, to have confidence and to be connected through friends, family, colleagues and communities.

Yet for too many disabled people this isn’t the case.”

“I’ve been excluded from social situations or activities due to my condition. People make assumptions about what I am able to do. It’s really frustrating.” – Shani

“Earlier this year, Opinium polled 2,000 disabled adults for Scope and found:

  • 49 per cent of disabled people said they feel excluded by society
  • Just 23 per cent said they felt valued by society
  • On top of this, only 42 per cent of disabled people believe the   UK is a good place for disabled people

These statistics make it obvious that the fight for disability equality is far from over.

Throughout the last century we’ve seen action that has led to dramatic changes in our society, but our research demonstrates that there is still a way to go until all disabled people are able to live the lives they choose free from discrimination and low expectations.

At Scope we want to change this.

Whilst we might have protection in law, at Scope we know there is still a way to go until until all disabled people can enjoy equality.”

You can read more about the research in our report, ‘Independent, Confident, Connected’.

Be a Disability Gamechanger

“We have launched our new campaign calling on all those who want to work with us to show their support for disability equality. It doesn’t matter if you’re a bus driver, a politician, a teacher or an employer. You can all make a difference.”

We can’t do it alone. We know that we are stronger as a movement, as a community and as a force for change, when we work together.

If you, like us, want to end this inequality, join our campaign today.

How growing up with cerebral palsy helped me achieve my dream of being an author

Throughout her life, people have made Rachel feel like she couldn’t achieve as much, because she has cerebral palsy. Those negative attitudes always spurred her on and today her hard work has paid off. Not only is she realising her dream of publishing a novel, she’s done this alongside her full time job, proving that with hard work, you can achieve anything.

In this blog, she writes about determination, pursuing your goals and seeing disability as a strength. 

Having had cerebral palsy since birth, I realised when I was in primary school that I would always have to work harder than everyone else to achieve my dreams.

I worked so hard to learn to walk, to hold pens, to tie my shoelaces and to fasten buttons. Sometimes, I’d become angry and frustrated at not being able to do things my friends could but then I started to think about alternative ways of doing things, such as getting Velcro put on my shirts and shoes.

I have difficulty holding a pen, so it took me longer to write essays and do homework. Despite that, I loved writing diaries and stories as a way to understand my experiences and I dreamed of being a writer.

Having spent hours of my childhood having physio on my legs and hands to improve my co-ordination, it was ingrained in me that if I put the effort in, I would reach my goals. Which is why, when working full-time as a primary school teaching assistant, I decided to stop writing in my notebooks and actually knuckle down to take writing seriously.

My own experiences shaped my novel

When I started my novel, I wanted to use my writing as a vehicle to say something about my life. I chose to write about a young woman with a facial birthmark and relate some of my experiences and feelings growing up with cerebral palsy through her.

One theme in particular is how suffering cruel comments as a child forms her view of herself as an adult and how she finally accepts herself. The main difference between my central character and me is that Ivy can cover her disfigurement whereas my impairment is on view to everyone I meet.

People sometimes make judgements when they first see me. I’ve also had strangers ask what is wrong with me which I find intrusive. I can almost hear them breathe a sigh of relief when I say ‘cerebral palsy’ as they can compartmentalise me beneath that neat label.

A book on a table next to a mug of coffee

Not giving up

There have been some evenings after challenging days in school when I just felt like sitting in front of the T.V. instead of looking at a computer screen for three hours. But having a long-held dream in my sights of becoming an author, I stuck at it.

Early last year, I submitted my first three chapters and synopsis to half a dozen literary agents. A couple got back to me to say that they liked my writing but my novel didn’t fit their list. Although disappointed, I was heartened by their response to my novel and I wasn’t about to give up on my dream.

The theme of the book is about putting the past behind you to live every day in the best way you can, which resonates deeply with me and I felt it was a message other people should read. So, I was delighted when the Book Guild offered me a publishing deal!

Seeing disability as a strength

From an early age, having cerebral palsy has given me a different perspective on the world to most people, forcing me to question why people act the way they do towards me, aspects which I’ve incorporated into my writing.

Writing is also all about hard work, routine and perseverance. Growing up having to spend hours learning how to walk or how to pick up and use a pen gave me qualities which have enabled me to complete my novel and achieve my dream of becoming a writer.

Somehow, I’ve managed to write a novel while having a full-time job and I think it’s my sheer determination that has got me through it.

Having cerebral palsy has not only made me into the writer I am, as I touch on disability themes in my work, but it’s been a defining factor in achieving my writing dreams. 

Roses of Marrakech by Rachel Clare is out this week. We’ll be giving away two copies over the weekend via Facebook and Twitter, so get involved!

If you have a story you’d like to share, get in touch with the stories team. 

Why I encourage talking about mental health at work

This year, Mental Health Awareness Week (14-20 May) is focusing on stressNot only can stressful work environments impact on your mental health, if you don’t feel supported, it makes things even harder.

Richard worked for years in a high pressure environment which sometimes made his OCD symptoms worse, but he carried on working, until the attitudes of his managers  made it impossible. Now Richard has set up his own company where he promotes a supportive work environment. In this blog, he shares his story.

I’ve experienced symptoms of Obsessive Compulsive Disorder (OCD) since childhood, and was formally diagnosed at 25 whilst working as a producer at an independent production company in London.

Talking about my OCD never seemed like an option

Looking back, I think the moment to moment existence of being a freelancer, constantly having to think about your professional reputation in an environment with high staff turnover and time pressures, made talking about my OCD never seem like an option, although sometimes it could be hard to hide from colleagues.

I never took a day off sick, and if anything I think my OCD may have increased my work productivity as losing myself in work could be a distraction from my anxiety. But there is no doubt that being in high pressure work environment could make my symptoms more distressing, which impacted on my overall well being and personal happiness.

It was during this time that my symptoms intensified , I was experiencing intrusive thoughts and my obsessive behaviour escalated to point where even simple day to day tasks such as leaving the house were taking up to an hour to complete.

It felt as if I was at a point of crisis. I reached out to some close friends and with their support and encouragement  I eventually gained the confidence to visit my GP.

Throughout this, I was still going to work, I didn’t take a day off, and was doing my job.

Unless the ‘old Rich’ came back, my job would end

I lost insight into my OCD day by day and my anxiety levels continually rose.  I didn’t receive any support from my colleagues until one day when two of my senior managers asked to speak to me.

I was taken into a meeting room and told that they wanted the ‘old Rich’ back. Still terrified to admit I was unwell, I sat through the conversation not able to say a word. The conversation resulted in me being told that unless the ‘old Rich’ came back then my job would end.

There was no sense of compassion or concern, no observation that my behaviour could have been a symptom of my mental health, or that I could of been struggling and unwell. My contract shortly ended and I didn’t work at the company again, not that I wanted to.

Creating a supportive work environment

In 2010, a few years after this experience, I set up my own production company, along with a close friend. The pressure of that can sometimes exacerbate my symptoms but the reward and freedom, and having supportive colleagues that understand the realities of OCD and its impact, has been really valuable.

I think my experience with OCD may have contributed to the kind of work we now specialise in; human interest stories of challenge and triumph.

As an employer, I encourage openness, celebrate diversity and champion difference. I genuinely believe that we are all different, we all have our struggles and creating a supportive work environment not only enriches those we work with but also benefits the work we do.

Mental Health Awareness Week is a great time to talk about mental health and reduce the causes of work-related stress. If you’d like help creating a mentally healthy workplace, have a look at the resources on Mind.

If you’re experiencing problems with your mental health, or worried about someone you know, you’re not alone. There are a range of ways to get help.

As soon as I stopped ticking the ‘disabled’ box, I got interviews

Charlotte Jukes is a qualified teacher based in Wales. After graduating with a first-class honours degree in teaching, she started applying for jobs but wasn’t getting any interviews. She decided to stop disclosing that she was disabled, just to see what happened, and suddenly she was getting interviews.

She’s supporting our Work With Me campaign to ensure that disabled people can get and stay in work.

Charlotte in her graduation gown
Charlotte at her graduation

I injured my spine in 2002 and was diagnosed with Fibromyalgia in 2013. I’m in quite a lot of pain every day. I’ve had my conditions for quite some time and they have worsened over the years. I was a teacher up until March this year.

When I first graduated, with first-class honours, I thought it was going to be quite an easy process to get interviews. Especially given that my Local Authority have a policy where disabled people are guaranteed an interview if they meet the person specification.

Unfortunately, that wasn’t the case.

Friends with fewer qualifications were getting interviews for the same jobs

I was very confused. I didn’t know what I was doing wrong. I found out that my friends who had 2:1s and 2:2s were being interviewed for jobs that I wasn’t.

I was the one people would come to for help with grammar, application forms, personal statements and CVs because English language is one of my specialist subjects, so I knew my applications couldn’t be bad.

I emailed the council to ask why I wasn’t being given interviews, as a disabled person who met all the requirements, but I didn’t receive a response. It just made me feel a bit hopeless. I felt like I was never going to be able to get a job.

As soon as I stopped ticking the ‘disabled’ box, I got interviews

My husband suggested that I applied for some jobs without marking the ‘disabled’ box, just to see what happened. I was a bit sceptical at first because surely if there is a policy in place, they wouldn’t be ignoring it? I was also worried. If I needed time off sick or I needed adjustments putting in place to make my role easier, what would happen then if I hadn’t declared that I was disabled?

As soon as I stopped ticking the disabled box, the interviews started coming in. I think I applied for eight or nine jobs then, and was given interviews for all of them.

I feel like there’s not much point in having a policy for guaranteeing interviews for disabled candidates who meet the criteria if they aren’t going to abide by that.

When I finally did get a job, I had all the support I needed

I was offered a job and the Head Teacher was excellent. When I first took the job, my conditions weren’t affecting me as much, but then the Fibromyalgia started to flare up. Things were worsening with my back and my arthritis as well.

When I told the Head Teacher that I was struggling, she referred me to occupational health. They made adaptations to make things easier. Things like a trolley for carrying books and special seats. That was great. I was very lucky there.

I loved everything about the job and I thought I was good at it. I loved the children and everything, it was brilliant! It was everything I’d ever wanted. I was even nominated for “The Pride of Wales” Award for “Teacher of the Year”, and I actually won that in 2016. Sadly, my contact was only for two years and I left in March this year.

Charlotte's "Teacher of the Year: Pride of Wales" Award
Charlotte’s Teacher of the Year: Pride of Wales Award

Now that I’m unemployed again, I’m worried I won’t get another job

I’ve started using a wheelchair and I feel that I have to tick the ‘disabled’ box now. If I didn’t and I just turned up in a wheelchair, I don’t know if the school will have access.

I’m worried about the future because I know it’s going to be very hard for me to get back into work. What will I do after all the years of work that I put in to train to be a teacher? It’s what I’ve always wanted to do since I was a little girl, and to know that I won’t be given a chance just because I’m disabled is hard to accept.

I’m supporting Work With Me because I think that employers and policies need to improve. Just because I’m in a wheelchair, doesn’t mean that I can’t do the job as well as any other person.

Be part of making change happen. Find out more about Work With Me and share the campaign on your social media networks using #WorkWithMe.

We’ll be publishing a series of powerful stories, videos and photography over the coming weeks to highlight the issue so that we can secure everyday equality for disabled people.

My advice to anyone with a hidden impairment

Alex has worked for West Yorkshire Police since 2006, where she first joined as a Police Community Support Officer. She was diagnosed with Dyspraxia and Dyscalculia in 2014. Alex is involved with the Positive Role Model Programme, a West Yorkshire Police initiative to encourage more people to be open about disability. The message is “It’s okay to be you” and in this blog, Alex shares her story.

Before joining the Police I had lots of ideas of what I wanted to do as a career, but I never seemed to be able to focus on any one single pathway.  I struggled at school in all things academic, especially Maths, but nothing was ever flagged up.

Hidden impairments were not really known about in mainstream schooling. I think it was partially due to excelling in my social abilities. My reports always said ‘Alex is a cheerful, chatty person, a delight to have in class, very sociable’, coupled with ‘but she could try a little harder, she needs to concentrate more’.

When I was diagnosed a massive weight was lifted

When I was diagnosed in 2014 with Dyspraxia and Dyscalculia a massive weight was lifted. I am not stupid, I do not need to concentrate more. I am already concentrating much more than most people on the simplest of tasks. I also realised I had to stay away from anything to do with numbers if I wanted a stress free life.

I once had a job as an Assistant Manager of a high street shop. Most of the time I was good at it until it came to cashing up the tills at night – nightmare! It was so stressful and I assumed I must be really stupid to get things wrong time after time. Thankfully, my personality has always kept me going even if sometimes I feel I am going to crack. Now that I know I have Dyspraxia and Dyscalculia I can give myself a bit of a break from being ultra-hard on myself and ultra-critical of my mistakes.

Alex laughing, with a park in the background

Fighting to succeed

In a way, not being diagnosed earlier made me the person I am today who works hard to achieve everything I want at work and at home. I am driven, confident and sorely honest with myself. My conditions do not disable me but they do challenge me and I am up for a challenge in any form. It is this drive to succeed at everything I do that keeps me fighting to stay at work.

In my 11 years in the Police, I’ve had several roles and I am currently in a dream position at the Regional Scientific Support Service, training to become a Fingerprint Identification Officer. This is my biggest challenge to date and my Dyspraxia is really putting up a fight with the capabilities required for the position. But I have had this battle before and it hasn’t stopped me succeeding!

We need to think about reasonable adjustments

The assessment did get me thinking: why make a person with Dyscalculia (someone with no natural ability with numbers) do a Maths based test? Is that not setting them up to potentially fail? I fully acknowledge the need to assess people’s skills and resilience – especially in jobs like the Police – but I feel the current methods of assessment do not match our modern day understanding of disability. I think assessments could be more reasonably adjusted – impairments are much more complex than requiring a bit of extra time.

I think the recruitment process has moved forward with the introduction of a presentation as it’s another means of demonstrating a specific skill. These are much more relevant than demonstrating you can work out percentages.

Woman smiling inside an office

My advice for anyone with a hidden impairment

Some people feel like they want to hide the fact they have an impairment but I almost want to shout it from the rooftops. It validates me, my quirks and my frustrations. It means that people know to give me that little extra time and patience and afford me the right to get things wrong more often than is considered ‘normal’.

I would say to anyone with a hidden impairment: be open, be honest, be confident, be adaptable! Life is challenging enough without a hidden impairment and in coping with both you already have one up on the rest of them.

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

Read more experiences of having a hidden impairment.

Let’s stop disabled people being labelled “unemployable”

My name is Jodi and I am an Employment Adviser at Scope. It’s my job to support disabled young people into employment.

Right now, disabled people are more than twice as likely to be unemployed than non-disabled people, regardless of the skills, experience and expertise they might have. It’s unjust and unfair. With donations like yours we are working to change that.

A lot of things can stand in the way of a disabled person getting on at work – from difficulty travelling to and from work, to confidence issues or a lack of experience and qualifications – up until now.

Thanks to donations of supporters like you, we can work with young disabled people to find the right job opportunity or apprenticeship, help them with CV writing and interview practice and also support them in their jobs once they’re employed.

It’s rewarding work and I love it. But it can also make me sad and angry.

Misunderstanding and prejudice

All too often, I see misunderstanding, prejudice and even bullying in the workplace and a tendency among employers to think of disabled people only in terms of what they can’t do.

It can be frustrating and demoralising for young people to be overlooked or labelled ‘unemployable’ – to feel like the pathway to greater independence and financial stability is getting narrower and narrower.

For a young person struggling with the whole idea of finding a job, having someone to help them navigate the pathway is really important.

Breaking down barriers

I work with disabled people to understand what unique and valuable skills they have to offer. This may involve a volunteering role to build up confidence and self-esteem. In other instances, something like time keeping skills or the right preparation for an interview can make all the difference.

Employment Advisor talking to a disabled customer
Jodi provides one-to-one support for disabled people looking for work, like Nusrat

For employers, having Scope on hand to provide ongoing support is incredibly useful. By helping them to understand and meet accessibility requirements, we quickly break down barriers.

But for wider change we need to do so much more. That’s why we are also working to influence government policy aimed at closing the disability employment gap, as well as running campaigns to educate the public and address common misconceptions about disabled people and what they can and can’t do.

With your help, we can continue to work with disabled people to ensure they have the same opportunities to find fulfilling work and become more independent – both personally and financially.

Thank you so much for your support, it means a lot to me personally to know you are with us. If you can, please make an extra donation today so we can do even more to support disabled people into work.

I’m just like any other mum – disability doesn’t change anything!

Marie and her husband Dan are the proud parents of Mark, who’s three years old. Marie has brittle bone disease and uses a wheelchair, so aspects of being a mum can be challenging. To mark Mother’s Day, Marie updates us on their past year –  Mark has been coming on in leaps and bounds, and there have been changes for Marie and Dan too.

Mark has my independent streak

Mark has stopped being a toddler and is most definitely now a fantastic, handsome and intelligent little boy. He has absorbed my fierce independent streak and most household tasks now echo with ‘No, Marky do it!’ in his own special little voice. His increased independence makes life easier physically – all the jobs I couldn’t do like picking him up are now in the past – but we have new challenges, how DO you discipline your toddler when he’s your own height? It’s a good job I can still shout and hold the purse strings!

One of his favourite things (at the moment!) is cooking, and this is where our fantastic adapted kitchen comes in; it means I can cook for the whole family and Mark can get involved too. He loves making gingerbread men! We designed the kitchen ourselves with a number of clever adaptations using standard materials to make it as cheap as possible – things like using wall units as low-level cupboards to give my chair room to fit underneath. It’s amazing how a few simple bits of lateral thinking make all the difference!

While the more sedate things are mummy jobs, the active things are daddy’s domain. Mark recently started swimming, something that he can do with Dan while I watch. I can swim (I’ve been known to flap about and propel myself up to 800 metres, although I won’t break any records!) but the idea of going in a bustling, busy public pool with Brittle Bones doesn’t sound too smart. I leave that one to the boys.

Marie and her 3 year old son Mark sat at table

Returning to work

And Mark definitely is a boy now, we registered him in our local preschool for 3 mornings a week starting back in January – the start of his funded time. He adores it! Whilst we’ve always had him out and about doing things (Start the Art, Mini Strikers, Rugby Tots to name but a few) since he was about 6 months old, he really has responded well to the structure of preschool. The loving and nurturing home we have created for him has worked, he’s ahead of his age targets across the board.

Mark now being at preschool has left a hole in my life, and I’m never one to sit still doing nothing. I’d get bored too fast. So, I decided to use my degree (First-class BSc in a number of subjects including Social Policy and Child Development) and my long experience in the health and social care field as both a recipient and worker to get a job where I can really make a difference. Such an opportunity arose and I’m proud to say I am now a college tutor, tutoring a wide range of courses. It’s brilliant! I get to bring a unique view to the table, helping students (e.g. care practitioners) see the wider issues at play beyond just learning the course. I hope they are learning a lot! Mark can also see me earning (as he puts it) ‘pennies for rides!’. I guess that returning to work as your child gets older is just another one of them milestones and I see myself as just like any other mum despite the 200+ broken bones, life-saving surgery as a teenager, the fact that I’m fully wheelchair dependent and have daily chronic aches and pains from years of physical trauma.

Dan has a new job too. Sadly he was made redundant following a very successful career in space research – he was one of the team who landed a spacecraft on a comet in late 2014. Google ‘Dan Andrews Rosetta’ if you want to read more! Sadly the end of the mission meant an end to the funding, and he lost his job. That was, naturally, a worrying time for us all. Not only was he job-hunting – he needed a company within a short commute distance to tie in with family, with normal office hours and that would recognise his transferable skills. He struck gold and is now working in the fascinating field of special missions aviation. Mark should have fun telling his school friends about what Daddy’s done for a living!

Marie holding a tray of gingerbread men while Mark sprinkles on flour

Remembering my own mum

So that’s it from us. A year of changes for us all and a lot of adventures! We like to think we’re giving Mark the best upbringing we possibly can. He’s always doing things and he most definitely doesn’t see me as anything other than ‘Mum’! It is still hard doing this without my own mum, there are countless times when I want to just call her and ask ‘What do I do if he…?’ or to share the latest milestone met. Readers who read my last blog will know that she passed away very suddenly in 2012 and this will be another emotional Mother’s Day for me. As well as all my other health conditions I am now also battling prolonged grief disorder but I am using my strength to ensure I am making each day count and living life to the full with my lovely little family. All I can say is that my upbringing from her definitely stuck, I wouldn’t be the fiercely independent working mum and wife that I am today without her teaching me that my disability needn’t stop anything!

Find out more about Marie and her family – read her previous blogs. If you have a story you’d like to share, get in touch with the stories team.

“I have a love-hate relationship with my benefits”

Josie, from Bristol, was a nurse until 2008 where she developed a number of impairments which affect her health and mobility.

She has most recently been diagnosed with Mast Cell Activation, a condition which affects immunity and increases the chances of anaphylaxis attacks.

In this blog, she talks about her journey of getting different benefits she needs and the anxious days where her payments stopped completely.

I have a love-hate relationship with my benefits. I am grateful that they exist and that I can live as a disabled person, but I was a worker and I still find it hard that I can’t earn my own money.

When I became ill in 2008, I had just got a new job but hadn’t started yet. After a couple of weeks of no income, I went onto incapacity benefit . This was £ 73 a week. It was so little. Out of that I had to live, pay towards my rent and support my children.

My most heart-breaking moment

I did a depressing budget where I couldn’t afford to see my kids or contribute to them at all. My son asked if I was coming for half term to see him. I had to say no. It was my most heart-breaking moment. At this point, I had been denied three times by Disability Living Allowance (DLA) and was awaiting a doctor’s visit at home.

In 2011,  I was moved over to Employment and Support Allowance (ESA). I filled in the 40-page form and got all my paperwork together. I was so worried. I was put in the work-related activity group (WRAG). This involved a trip to the job centre on my birthday. I had two people with me, wore a face mask and hoped I wouldn’t need to get out of my wheelchair and need the toilet.

Josie, a disabled woman, wears a face mask to protect against allergens
Josie wearing her face mask

In 2012 , the job centre invited me again. I was now single and having more reactions so they rang me. I was so so nervous. They put me in the support group and realised I was too unwell to study and other options like office work were a no and I couldn’t even go in a charity shop due to my allergies no matter work in one. So I was released into the utopia of the support group.

It made me anxious and worried

In 2012 , I was reassessed for DLA. My three-year award was up. Reassessment meant a full assessment as if I was applying for the benefit from scratch. I thankfully had an amazing social worker who I will be forever grateful for. Between her and the Occupational Therapist manager, I got all the assessments and paperwork together (again) and was awarded five years. This is due soon and with the move to Personal Independence Payment (PIP), I am not looking forward to it.

This year a work capability form arrived. At first, I thought it was a mistake. I rang, it wasn’t. I can’t write easily or well so I started answering the questions into my laptop. I was worried and scared and avoided dealing with it for a couple of weeks. It made me anxious and worried.

I knew I wasn’t going to be able to achieve it in the time given, so I rang. I was told to get the form back when I could, with no mention of money stopping. Two weeks after the date on the form I had it ready and was going to get it printed by my carer as I get two hours once a week for errands. Then I missed a payment and that day had a letter saying my ESA had been stopped. I rang and it was confirmed.

Josie, a young disabled woman, following a reaction where her face has swollen and become red
Josie following a reaction with swelling and redness

I asked for help, this took five phone calls. The first said no we don’t have your case anymore, ring ‘X’. I rang ‘X’ and they said ring ‘Y’, ‘Y’ said ring ‘Z’ first. Eventually, I broke down in tears, sobbing. A man rang and I answered the questions (including really personal things like how heavy my periods are, how often I need the toilet at night, if I was continent etc) and he filled in my form for me. He reinstated my money immediately. I was told a copy of the form would be sent for me to sign but it never came. But my money continues.

In the four days it took for me to get help, I had a p45 and a letter saying my housing benefit had been stopped. If I had been in hospital or unwell and not able to do the chasing, my life would have completely fallen apart and I would have lost the roof over my head.

Two days after the phone call I had an anaphylaxis. Stress makes it more likely I will have one. Anaphylaxis is not a minor allergic reaction, it’s where you swell up, your throat closes and your blood pressure and pulse drop. This happens quickly (within three to five minutes) and I have to be ready to give myself an EpiPen, otherwise, I would die. I have had to have 78 EpiPens so far and I will shock again.

What needs to happen next

My needs are documented in so many different places – if only these records could be joined up so I don’t need to repeat myself. I’m eight years in now and I feel battle weary.

We need to look at this Work Capability Assessment and find a more holistic, compassionate way forward.

Visit Josie’s blog site to learn more about Mast Cell.

If you have any questions about benefits or employment, contact Scope’s helpline where we provide free, independent and impartial information and support to disabled people and their families.

You can also start or join a discussion on our online community.

Tell the Government what you think about support in and out of work

Yesterday the Government launched “Improving Lives”, a consultation on proposals around disability, health and work.

We know that disabled people are twice as likely as the general public to be unemployed and just 48 per cent of disabled people are in work, compared to 80 per cent of the wider population.

The difference between the two rates, known as the disability employment gap, has stood at roughly the same level for more than a decade.

We have been calling on the Government to deliver on its commitment to halve the disability employment gap, and to deliver a strategy that tackles the barriers disabled people face in and out of work.

Today, the Government have published some proposals on how to address this. The question is will these proposals translate to meaningful legislative and policy change?

What is “Improving Lives”?

Improving Lives is a Green Paper, which essentially means the Government wants to find out about and discuss an issue with the public before deciding on any action.

Improving Lives is a document about improving the support available to disabled people in and out of work.  The Government are looking at the following areas:

  • The support people need to get into work
  • The support working disabled people might need
  • Assessments for out of work benefits and employment support
  • The role of employers in recruiting and supporting disabled employees
  • Health and care for people both in and out of work

You can read Improving Lives in full on the Government website.  It’s also available in in easy read,  BSL, audio and braille formats.

The consultation is open from 31 October 2016 until Friday 17 February 2017.

A young disabled women using a computer
Mima, who took part in our First Impressions, First Experiences employment scheme

What do we think about the Green Paper?

It’s right that the Government is consulting on support for disabled people in and out of work. We welcome some proposals, including working more closely with employers, challenging attitudes and halving the disability employment gap.

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.

Not every disabled person should be expected to work, and everyone’s contribution to society should be recognised regardless of whether they work or not.

We want to see specialist employment support made available to all disabled people who want to work, for this to be voluntary, and for it to not impact on any financial support.

We’re also concerned about previous decisions to take £30 a week from new claimants placed in the WRAG group. Reducing disabled people’s incomes won’t incentivise people to find a job. It will just make life harder. We’ll be urging government to rethink this cut, as part of our response to the Green Paper published yesterday.

The paper sets out some important questions about reform to the fit for work test, accessing employment support and making workplaces more inclusive.

However, this document is just the first step. At Scope we want to see meaningful consultation with disabled people lead to real policy, legal and attitudinal change. 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.

How can I get involved?

You can respond to the consultation using the Department of Health Consultation Hub website.

If you would prefer, you can respond by email: workandhealth@dwp.gsi.gov.uk

Or by post:

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

What is Scope going to do?

Scope will put together a response to the consultation.

As part of this, we’d like to hear from disabled people about their experiences with things like claiming ESA, taking part in employment support programmes and getting support while at work.

We’ll put out more information on how to get involved over the coming weeks, but in the meantime if you’d like to get involved please contact Mel Wilkes, a Policy Adviser on melanie.wilkes@scope.org.uk