Tag Archives: disability

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.

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

For National Storytelling Week – help us champion books that feature disability

Here at Scope, stories are central to everything we do. For National Storytelling Week we’re taking the opportunity to celebrate authentic stories and calling on publishers and authors to improve the representation of disability in literature. Read on to find out about all our activities so far and what we plan to do next.

Why tell stories?

Great stories have the power to connect us, to raise awareness, to make people feel and act. They’re at the heart of everything we do at Scope and they have a huge role to play in achieving social change. Few people are moved by statistics or facts, but when you hear someone’s personal story it can have a powerful impact.

Stories tell us things we didn’t know before; they show us other ways of living, other experiences, other views on the world. They can also make us feel less alone by showing us people like us and stories like ours – happy ending or not.

Telling authentic stories

At Scope, every story is told by the storyteller themselves – we’re just the ‘caretakers’, if you like. Although we interview people about their experiences, the stories we share are always in first person and completely in the storyteller’s own words. And they always have the final say – we never interview and run! We hope this builds trust and shows just how much we value them.

We work with storytellers to share their stories in lots of different ways. This could be anything from a policy report – using real experiences to bring our influencing to life, at events, in fundraising materials, in films and, very often, on Scope’s blog.

We’re really proud of the way we tell stories at Scope. Putting storytellers in charge means we only ever tell authentic stories. We give people a platform to share their diverse experiences and show a more accurate picture of disability. Often, opportunities for people to share their stories are lacking – disability isn’t a huge focus in the media and when it is, it’s often the negative side that you see. We want to make sure that people can tell the story that they want to tell.

Which brings us on to National Storytelling Week.

Dan, an author holding up his comic book, poses with his daughter Emily who uses a wheelchair
Dan and Emily White – creators of Department of Ability

People want to see better representation of disability in literature

In the stories team we’re privileged to hear about a range of experiences in our day to day work. Unfortunately, for most people, their chance to read stories about disability are limited. If you think back to the books you enjoyed as a child, or even as an adult, you’d be hard pushed to find many featuring a disabled person. As a result, lots of people either don’t know much about disability or they only know the limited (sometimes misleading) view that they’re presented with.

This contributes to poor attitudes and stereotypes which can affect disabled people’s lives in number of ways. Another downside is that disabled people don’t get to read about stories and characters they can relate to.

We ran a Twitter poll which showed that 3 in 4 people want to see more inclusion of disability in literature

So, for National Storytelling Week, we ran lots of activities to campaign for better representation of disability in literature, and celebrated some great work that we want to see more of. 

We ran a comic book workshop with Dan White, creator of Department of Ability. Dan was inspired to create the comic book when his 11-year-old daughter Emily wondered why there were no wheelchair users like her on TV. Dan then set out to create a comic book where Emily would lead a group of superheroes whose impairments, far from holding them back, are actually their superpowers. To watch a film about the comic book workshop, head to our YouTube channel.

Following the workshop, we posted each superhero creation on Facebook and ran  a competition – with the winner getting to see their superhero turned into a guest in the next Department of Ability comic book. Here’s a short film of the winner, Daisy, explaining her superhero design.

We also partnered with the Huffington Post to share a blog each day from different storytellers. Incase you missed some of the content you can catch up here:

“Books Hold A Special Place In My Heart – I Just Wish They’d Have A Place For Me” – Heather’s blog

“The World Needs More Disabled Superheroes” – Dan and Emily’s vlog

“I Don’t Want To Read Books That Treat Disability As A Tragedy” – Anne’s blog

“It’s Immensely Important For Disabled People To See Positive Portrayals Of Themselves In Literature” – Asim’s blog

“Hey JK, Why Wasn’t Harry Potter Disabled?” – Phil’s blog

Following that, we partnered with Books on the Underground to do a ‘book drop’ where we hid 30 copies of Quentin Blake’s ‘The Five of Us’ around accessible tube stations. We had lots of engagement on our social media channels and our campaign was featured on Books on the Underground and on Quentin Blake’s website which was an amazing way to share our message with new audiences.

Our next step is to reach out to publishers and authors to ask them to improve their representation of disability in future books. We will keep you updated once we hear more. – so stay tuned!

To find out more about stories at Scope, head to our Stories Hub and please get involved.

I was told I may never walk again – now I’m going to run a Half Marathon!

Erika was told eight years ago she may never walk again. She talks about the barriers, attitudes and challenges she has had to overcome from day to day. Now she faces her biggest challenge yet – running a half marathon.

I have Ehlers-Danlos Syndrome (EDS) and a form of Dysautonomia called Postural Orthostatic Tachychardia Syndrome (PoTS). My autonomic nervous system does not work leaving my body unable to control basic functions such as heart rate, digestion and blood pressure. My connective tissue is also faulty; it is weak and stretchy causing daily dislocations and pain and exhaustion just to name a few. When I was 12 I was diagnosed with Complex Regional Pain Syndrome (CRPS), due to this I lost the use of both my arms and legs, I was told I would never walk again.

Social pressures and attitudes

Love it or hate it social perceptions surround us everywhere we go, overflowing our brains like a virus on an unsuspecting computer. Without realising, judgements are made on a person’s abilities and circumstances without real knowledge. Embarrassment, awkwardness, isolation; formed from age old perceptions and misunderstanding, feeding down through generations, effecting perceptions today. You ask why and you’re told “It’s just the way it is”.

The frustration runs through our veins like the harshest river, everyday willing the banks to burst, for reality to prevail and everyone to see we are human too. Constantly having to prove ourselves twice over, opening up our souls to strangers in a futile attempt to prove we are more than a malfunctioning body, more than a pity case, more than our disability.

What do you think of when you hear the word disability?

When you hear that word, what first comes to mind?

“I feel sorry for you.”
“You’re so brave.”
“I’m so lucky I’m not like you.”
“What kind of life is it to be like that every day.”
“You’re not living, you’re surviving.”
“I hope my children are not like you.”

For many it is these six heartbreaking quotes. For too many people, a person with a disability is seen as someone who is surviving, not living. A person saddened and ruined by their circumstances.

However to me, my disability made me the person I am today.

The person who gives everyone a chance, no matter what their past.
The person who works tirelessly every day to achieve my goals.
The person who knows the sky is the limit.
The person who is a dancer.
The person who is understanding.
The person who is training for a half marathon.

It is now 8 years after being told I may never walk again and I am currently training for a half marathon which I will be completing in aid of Scope.

Feet of disabled woman training

A half marathon for me will be an extremely physically and mentally tough journey. I don’t mean it’ll just be a little tiring, I mean one of the toughest things I will ever do!

So, why do it then?

Good question!

I have grown up in a society where disability and illness are a taboo. A vast majority of people assume that illness and/or disability mean you can no longer live a fulfilling life and that you definitely can’t do sport. This made life growing up with a disability hard for me, and even more so when I fell very ill two years ago. I felt consumed by hopelessness, overcome by the unknown, realising the things I would never do. Social perception cemented this belief in my mind, pushing me every day to give up. Telling me it was “just the way it is”.

The thing about disability is it makes us powerful. It provides knowledge of issues much wider than our own. Opens our mind to what life really is and that it is up to us to form our own future. If we are able to overcome what society dictates we should and should not be able to do then we can do absolutely anything.

So I am determined to do this half marathon! Training will be hard for me, I know that. I also know that there will be times that my health will go downhill, I will be scared, upset, angry and want to give up. There will be days when I will think it is impossible.

But I will remember the power I have. And I will remember the little girl with Downs Syndrome I used to teach dance to and the many other disabled children out there with so much passion, enthusiasm and raw talent. And I will do it for them. I will aim to change social perception so that they can grow up with less of a fight, knowing that just because you may be disabled or chronically ill it doesn’t mean you can’t do something, just that you may have to do it in a different way.

Feelling motivatedby Erika’s story? Take a look at some of our challenge events today

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

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

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

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

And regular updates on how much I wanted to die.

We need to feel able to talk about mental illness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“This child is spastic. Take her home…”

When I went blind

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

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

‘Telephonist required’

Lin Berwick on phone
Lin Berwick on phone

Finding a job was another barrier Lin had to face. 

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

Becoming a Methodist preacher

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

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

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

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

Books by Lin Berwick

Find out more about the Lin Berwick Trust.

Read the rest of our blogs for Disability History Month

“All disabled women should be sterilised” – Disability History Month

Psychotherapist and writer Antonia Lister-Kaye is 85. She is one of a number of older disabled people who contributed to The Disability Voices website at the British Library Sound Archive as part of Scope’s Speaking for Ourselves project.

For Disability History Month, Antonia looks back at how attitudes have changed to disability during her extraordinary life.  

I was kept in a chicken incubator!

Antonia with nanny
Antonia with nanny

My mother was a Christian Scientist, and she didn’t like doctors. I think it was explained to her that we must at least have a nurse. My father got a chicken incubator from his brother, who was a farmer, rushed to the house, and I never went to hospital. I was kept in a chicken incubator in my father’s study, and they did have this nurse, that was a compromise, but my mother didn’t see me for weeks and weeks, because she was quite ill. I don’t think she wanted me anyway. I know she didn’t, because she was only very young, and, you know, didn’t know much. She wouldn’t have had me if she’d known anything. But I think that’s how I came to be how I am.

“All disabled women should be sterilized.”

My mother-in-law was absolutely furious because I had a disability, and she thought it was genetic. A fortnight before my baby was born, she suddenly said, ‘Well, you know, personally, I think all disabled women should be sterilised.’

Teaching in a night school under Apartheid

Former South African President Thabo Mbeki
Former South African President Thabo Mbeki

One of my students, for a short time, was Thabo Mbeki, the former President of South Africa. He was a very clever man, and he was a very beautiful man, too. He was about 19, I suppose, when I taught him. We followed syllabuses from London External Examinations. You could do exams which were called ‘London External Degrees’, in those days, and we based our teaching on those. I taught History, and they were all mad keen to do the French Revolution and the feudal system, that was their two favourite topics… I think I only taught him for a short time, but there were equally interesting students, but he was the cleverest.

Hear more of Antonia’s experiences of the apartheid regime. 

Legalise cannabis campaign

Antonia smoking a joint in a Amsterdam cafe
Antonia smoking cannabis in Amsterdam

My naughty daughter, Frankie, used to get hold of cannabis; this was in the seventies, and bring it home and smoke it, so I said, ‘Oh hey, give us a go,’ and because I knew people who smoked cannabis in the fifties, in Hampstead, you know: well, they do everything in Hampstead, before they do it anywhere else, and so she gave me a joint, and I smoked it.

I did, I’m not a smoker, so I didn’t inhale properly, but I said, ‘God, Frankie, the pain’s dropping out of me fingertips,’ and so she said, ‘Oh Mum, isn’t that interesting? Have another one. I’ll roll you another one.’ … and after that, I read an article, in The Independent, written by somebody with MS, called Liz, who lived in Leeds, and she wrote about the marvelous effect of cannabis on her MS, so I thought, ‘God, I must find out more about this lady…’

Listen to Antonia’s life story on The Disability Voices website.

You can also buy Antonia’s memoir, Broccoli and Bloody Mindedness on Amazon. 

Read the rest of our blogs for Disability History Month.

Disabled people and domestic abuse – we need to do better

Disabled women are twice as likely to experience domestic abuse than non-disabled women, yet support services aren’t always accessible. Disabled people can also face unique challenges in recognising and reporting abuse. It’s an issue that isn’t often spoken about. This needs to change.

With this in mind, domestic abuse charity Safe Lives is doing a ‘spotlight’ throughout October and November, focusing on how professionals can better support disabled people experiencing abuse. They have been posting resources, webinars, blogs and podcasts and they are doing a live Twitter Q&A on Friday 2 December.

We spoke to Carly, an advocate for autism and girls, about why this is so important.

I was diagnosed with Asperger’s at 32 which is a late diagnosis, but autism in girls wasn’t really understood. I have three daughters; two of them are autistic as well, which is how I found out that I was. I was looking up everything I could about autism and girls and thought “I’m autistic too” – I ended up being diagnosed on film!  The consequences of not being diagnosed can be severe, including being in unhealthy relationships.

Recognising and reporting abuse can be harder for disabled people

For us all in society, disabled or not, the very nature of what abuse is can be murky. All too often we see adverts of women with bruises as an image of domestic abuse. Abuse, however, takes many forms. It’s difficult enough to recognise and report abuse for anyone experiencing it, but for disabled people it can be even harder.

The choice for a disabled person to leave their abuser is not an equal choice to those who do not rely on their abuser for their daily care as well. And how can a person with a social and communication condition have the equality of access to leave, when they may not even realise that what they are experiencing is abuse?

A lot of autistic people are vulnerable because of our lack of social imagination which is about understanding “If I do this, what happens next?” – consequences. We’re very often so consumed in our own thoughts that we think other people have the same wants, needs and agendas as we do, which can lead to us being very vulnerable. Another thing is our theory of mind – we imagine that other people have similar thoughts to us. So if you knew you were experiencing abuse, you may not report it because you think that other people already know. Because you know, they must do too. It can lead to an autistic person being very angry and resentful because they think “Why aren’t you helping me?” – it’s because that person doesn’t know. You need to ask us direct questions, basically.

Carly sitting at the UN with a few people in the background
Carly, speaking at the UN about autism and girls

A “one size fits all” approach to domestic abuse doesn’t work

It’s only in recent times that coercive control has become a legal offence. For someone on the autistic spectrum who requires support with their routine, the control of their lifestyle, the control of their access to social events and family and control of their money, this could easily disguise an abusive relationship to an onlooker. Mix this with an autistic person’s fear of dramatic change, delay in emotional processing and the theory of mind differences described above, and you can see how someone may not seek help.

We need our safeguarding explained in a different way and support services need to be more accessible. The stuff that’s out there is really good but some little add ons would help. I’ve had a meeting with the NSPCC about their schools workshops and I’ve created a short online course on safeguarding for people with autism, which is free to do. Hopefully it will help people think differently.

Including disabled people in these important conversations

Safe Lives’ spotlight on this issue is vital. The protection of disabled people from abuse is a multi-layered complex matter that simply is not covered by standard safeguarding projects. The media also all too often leave our unique needs and experiences to one side in the vital adverts  and workshops on abuse – how to recognise it and how to seek help.

I think for many people, disabled adults are either viewed as not having relationships or sex and therefore void from these conversations, or seen as just being able to access the same sexual health and abuse information as everyone else. Of course, in reality, this is not the case. The most vulnerable in society are often the last to be supported. Disabled people aren’t asking for special treatment but we are asking for a fitting reflection of our experiences in society and to be part of the conversation, a seamless inclusion and not an afterthought.

If you have been affected by the content of this blog, you can contact the Samaritans or your local Refuge service for support.

You can find all Safe Lives’ content on their website and take part in the Twitter Q&A on Friday 2 December.

Disabled Survivors Unite is an organisation working to improve access to services for disabled survivors of abuse and sexual violence. Visit their website to find out more.

“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.

Bullied for being disabled, but we turned it into a positive – Anti Bullying Week

Rosie and Glen were both bullied at school because of their impairments. In this blog they talk about how they moved forward with their lives and want to spread awareness about the bullying many disabled people face. 

Rosie’s story

“Being bullied made me determined to raise awareness about invisible disabilities”.

Being dyspraxic meant at school I always stood out like a sore thumb compared to others.

From the way I walk and move in a clumsy uncoordinated way which was different to others, always falling or bumping into others or other things.

To it’s made me socially anxious and struggle to maintain friendships. I always had and probably will have different interests to people my own age. I’ve always been seen as disorganised, chaotic, messy and a bit all over the place.

Being so different made me an easy target for being at the receiving end of some awful bullying. Words can have such an impact on your life and how you see and perceive yourself. It made me lose what little confidence I had to begin with and really struggle with my mental health and I would hear the words of what people were saying constantly. I thought I must really be stupid as it was constantly being said to me.

I put a lot of the bullying due to lack of awareness to what dyspraxia is, the fact that dyspraxia is invisible to the eye and negative assumptions of what I could or couldn’t achieve. As an adult I still struggle with anxiety and will never be a naturally confident person.

But my experiences made me decide that nobody should have to go through what myself or my family had been through and I was determined that more awareness needed to be raised about issues invisible to the eye.

Rosie 1 edited square

The bullying I experienced has taught me the power of words and why I choose mine so carefully and not make judgements and assumptions about others.

I work as a learning support as a college and know the value of time, patience and empathy can have on students who may be struggling. I have also been able to prove the people wrong who said I wouldn’t achieve anything.

Words have the power to encourage, destroy, make someone loose confidence in themselves or make someone feel hopeful. We can all try and help people feel hopeful.

Glen’s story

“I’m still a little bit shy and probably always will be, but I’m far more positive now”.

I first went to a mainstream school, but it didn’t go well. The teachers didn’t know how to help, and I was bullied by other kids because of my sight loss. So I was removed very quickly, and transferred to a school for the visually impaired that my parents discovered.

Of course, my confidence had been shattered, so I was very shy. Which led to some of the kids at my new school bullying me as well. Not because of my sight, as they were in the same boat, but because they realised they could wind me up easily.

Glen wearing a suit in a park

However, I made good friends, and the teachers were extremely supportive, so my confidence gradually improved over the years. And I even became friends with the kids who had teased me at first. Partly because I was being more successful than them, but I also got to learn more about them, which helped me understand their behaviour and put it into context. We learnt a lot from each other.

So things turned out well in the end. I came away with great friends, fond memories and good results, and got myself a degree and a job. I’m still a little bit shy today, and probably always will be, but I’m far more positive and confident than I would have been if I hadn’t moved schools when I did.

This is an extract from Glen’s blog Well Eye Never. You can read Glen’s full post about bullying here. 

If you have a story you would like to share, contact Scope’s stories team.

Do you need someone to talk to?

ChildLine – 0800 11 11

ChildLine is a free, confidential support service for children and young people. Their staff speak to thousands of young people every day – you are not alone. Phone 0800 11 11 or visit the ChildLine website.