What does HIV look like? – World AIDS Day 2016

Steve is 30 and has been living with HIV for over a decade. He works for local government and lives in Hampshire with his partner and their cat. For World AIDS Day 2016 he shares his story. 

What do you think of when you hear ‘HIV’? What does the face you see look like?

For me, I’ll be honest, it was those ‘Red Nose Day’ videos of children crying and adults getting thinner and thinner.

I never imagined that one day it would be my face, but just over ten years ago that is exactly what happened.

Coming out is always tricky, I told my family I was gay when I was 15 (Mum cried). Having to do it all over again at 20 to tell them I was HIV+ was not much easier (Mum cried again), but surprisingly, it was not a great deal harder either.

I’d been dating a guy for a while who had HIV and never told me. I was diagnosed on the 1 August 2006, at around half past four in the afternoon and was surprisingly calm. I remember that after being told, I didn’t panic, or cry. I just sat thoughtfully for a moment then asked; “So, what happens next?”

Living with HIV

Stephen presenting at a conference
Steve presenting at a conference

Since then, for the past ten years, I have lived with HIV and continued to try and face it in the same, relatively calm, way. I have always been open about it, and told my friends, lovers and employers the truth.

They are usually surprised because, in all honesty, I’m not a face people would normally associate with HIV. If I may take a moment to describe myself, I’m 30, relatively slim (though with a fondness for cake), ginger and I work in an office.

It amuses me sometimes, that under the Disability Discrimination Act, something that the HIV positive community and those living with disabilities came together to secure, I am disabled.

With HIV I was considered to be disabled from the moment of diagnosis.

The Disability Discrimination Act is now 21 years old, older than I was when I was diagnosed.

There are thousands like me and HIV is not picky – despite the fact a politician elected to the Northern Irish Assembly didn’t know that heterosexual people could be affected by HIV –  it does, and thousands of them too.

What does HIV look like to you?

My opinion has always been that if I don’t talk about HIV or AIDS, if I try and keep my HIV diagnosis the secret, people will think that there’s something about it that I need to hide.
By accident of birth there isn’t.

I was born in a country where health care is free and the medications you need to keep you alive are given to you. The anti-retro-viral drugs that are now available can control the virus.

This means that if you test positive, as long as you test early and start treatment, you can expect to live as long as someone without HIV and not just live, but have a life.

This World Aids Day, we come together again to remember those who fought against stigma and stood up for equality protection under the law but aren’t with us today, and we say thank you.

Wear your red ribbon with pride.

If you’d like more information or support about HIV and World’s AIDS Day, visit the Terrence Higgins website or the National AIDS Trust website.

 

Disability is often written out of history. We need to ask why

As we continue to mark Disability History Month, Bekki Smiddy writes about  chemist and inventor Alfred Nobel. His legacy are the Nobel Prizes.  Nobel experienced epileptic seizures throughout childhood and here Bekki talks about her own experience of epilepsy and why it’s important we recognise that disability is not a bar to achieving great things in life.

I was diagnosed with idiopathic generalised epilepsy when I was eleven, after several years of unexplained seizures. I had no idea what any of it meant. And I didn’t really care. What I did care about was the way people had started to look at me.

Before I was diagnosed, I figured epilepsy meant I fell down and couldn’t remember sometimes, it wasn’t a big deal. It was other people that made it a big deal.

Every time the word epilepsy came up, everyone in the room would look at me.

My classmates would whisper the word “freak” as I went by.

I got sent out of the class by my teachers for having seizures.

I felt embarrassed and ashamed for something that was completely out of my control.

Leaflets on epilepsy are filled with medical jargon and only explained what was going on with my brain, and scared me with talk of Sudden Unexpected Death in Epilepsy Patients (SUDEP).  What I needed to know was how it would affect my life, how it would change it, and how to not feel so alien.

Looking through history

When first diagnosed I searched for historical figures who had epilepsy. I needed to know that I wasn’t going to be limited; that I could still achieve what I wanted with my life. That I wasn’t “wrong” somehow.

Throughout my adolescence and education I used it as rebuttal for those that attacked me or belittled me for my epilepsy.

We have been authors, military and political leaders, philosophers, scientist, composers and painters. Having a neurological condition didn’t have to hinder me in any way.

Nobel didn’t hide his disability, in fact he wrote poetry about what are perceived to be childhood epileptic seizures.

“…the convulsions followed, til I gasped

upon the brink of nothingness – my frame

a school for agony with death for goal”

But it appears to be written out of his history like so many “invisible conditions”,

Disabled people need role models

Epilepsy charity websites I viewed had sections listing famous people with epilepsy. Yet, it is missing from many disabled people’s biographies. We all need role models, but especially disabled people as we struggle for equality and to enjoy the same life chances as non-disabled people.

Disability History Month is important because many people don’t see disabled people as an oppressed group or understand that the language often used and how our impairments are described, can be so damaging. When people talk about the economy being ‘crippled’, or say that someone is “having a fit” when they mean a tantrum can be so hurtful.

We need to know more about the lives of disabled people and I hope that Disability History Month will help dispel the myths and help improve attitudes.

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.

Autumn Statement 2016: A missed opportunity to invest in social care

During his first Autumn Statement as Chancellor, Phillip Hammond spoke about creating an economy that works for everyone and helping ordinary families.

However, we heard little from the Chancellor today that will help support the UK’s 12.9 million disabled people.

Social care

Despite calls from across the sector and from his own MPs the Chancellor didn’t take the opportunity to invest in the social care system.

Social care is the support disabled people rely on to get up, get dressed, get out, and lead independent lives. However, after years of underfunding the system is under extreme pressure and needs urgent investment.

Without long-term and sustainable funding for the social care system more disabled people are at risk of slipping into crisis without access to the support they need. Nearly a third of young disabled people told us they already aren’t getting the support they need to live independent lives. The Chancellor wants everyone to be able to share in economic growth but without adequate social care many disabled people will be unable to work and contribute to their communities in the way they choose.

Employment

The Chancellor said he was privileged to report on an economy where unemployment is at an 11 year low, however the disability employment gap has remained at around 30 per cent for a decade.

Scope analysis also shows that disabled people are almost three times as likely to fall out of work as non-disabled people. If the Government are going to achieve their manifesto commitment of halving the disability employment gap they need to do much more.

Disabled people need a broad package of support to find and stay in work. This includes challenging negative attitudes, a greater focus on flexible working practices and investment in the Access to Work Scheme.

Despite last week’s vote in the House of Commons calling on the Government to pause changes to Employment Support Allowance for those in the Work Related Activity Group, the Chancellor did not reverse this decision today. Half a million disabled people rely on Employment Support Allowance (ESA) and are already struggling to make ends meet. Reducing their financial support won’t help more disabled people into work and we will continue to campaign against this decision.

Responding to pressure from MPs and charities, the Chancellor did announce changes to the Universal Credit “taper rate”.

This change to the rate at which someone loses their benefit as they increase their hours in work will be a slight improvement for some disabled people.

Extra costs

The Government today announced  further investment in digital infrastructure, including a £1 billion investment in broadband. For disabled people to benefit from the investment the Government must work to close the digital divide. 25 per cent of disabled adults have never used the internet compared to six per cent of non-disabled adults. We need to see targeted investment in digital skills training for disabled people and action to improve web accessibility.

The Chancellor said he wants to make sure the retail energy market is functioning fairly for all consumers. Life costs £550 a month more for disabled people, due to costs such as a higher fuel bills. It is vital that both the Government and energy companies think about how they can support disabled people with their energy costs more effectively and set out details for how they plan to do this.

The extra costs faced by disabled people mean many are just about managing and are the people Theresa May promised to help in her first speech as Prime Minister.

The Government must do more to include the UK’s 12.9 million disabled people in their vision of a country which works for everyone.   

What we would like to see in the Autumn Statement 2016

This Wednesday Phillip Hammond will give his first Autumn Statement as Chancellor, the Government’s first major financial statement since the vote to leave the European Union.

At Scope we’ve been campaigning and raising awareness of the important issues that disabled people face ahead of Wednesday’s Autumn Statement announcement.

Autumn Statement

There has been lots of speculation about what he will include. He has decided not to go ahead with previous Chancellor George Osborne’s formal target to create a budget surplus by 2020 which will give him some flexibility on how much he spends.

Theresa May’s first speech as Prime Minister set out her commitment to creating a country that ‘works for everyone’ and ‘allowing people to go as far as their talents will take them.’ A recent common theme has been a focus on those ‘just about managing.’ But what does this mean for disabled people and what are Scope been calling for?

Last week we saw passionate speeches from all parties about the need to rethink the implementation of forthcoming reductions in financial support to Employment and Support Allowance (ESA), at the beginning of the month the Government launched its consultation to tackle the disability employment gap; and, last month we published research highlighting the crisis in social care for young disabled people.

Taken together, there are many disabled people who are ‘just about managing’.

Our Extra Costs work has highlighted life costs more if you’re disabled. £550 a month more. From the need to purchase appliances and equipment, through to spending more on energy. And yet payments aimed at alleviating these – such as Personal Independence Payments (PIP) – often fall short of enabling disabled people to meet extra costs, leaving many turning to credit cards and payday loans to help with everyday living.

Ahead of the Autumn Statement we think there are three key areas that need addressing.

Social Care

Social care has been at the top of the news agenda in the run up to the Autumn Statement with the Care Quality Commission, Local Government Association, Care and Support Alliance and even the Conservative Chair of the Health Select Committee saying the social care system is in desperate need of investment. Working age disabled adults represent nearly a third of social users.

We have long been calling for sustainable funding in social care. Reductions in funding to local government over the past six years mean the social care system is starting to crumble under extreme financial pressure. We have heard from disabled people who have had to sleep fully-clothed, in their wheelchairs. Scope research in 2015 found that 55 per cent of disabled people think that social care never supports their independence. And just last month we found young disabled adults’ futures are comprised by inadequate care and support.

Social care plays a vital role in allowing many disabled people to live independently, work and be part of their communities. That’s why urgent funding and a long-term funding settlement are needed.

Extra Costs

On average, disabled people spend £550 a month on disability related costs and when we asked disabled people about their top priorities for the Autumn Statement, 70% said protecting disability benefits. We want to see PIP continue to be protected from any form of taxation or means-testing and the value of PIP protected.

The Government is expected to announce significant infrastructure investment and there will be potentially be announcements on digital infrastructure and energy.

We hope energy companies are required to think more about how they can support these consumers with their energy costs more effectively. With 25 per cent of disabled adults having never used the internet compared to 6 per cent of non-disabled adults, any new digital skills funding should include specific funding for disabled people.

Employment

The Government made a welcome commitment in their manifesto to halve the disability employment gap and a plan on how to achieve this in the Improving Lives consultation.

The Autumn Statement provides an opportunity for the Government to take steps to support disabled people to find, and stay in work.

Last week, MPs debated the changes to Employment Support Allowance Work Related Activity Group due to begin in April 2017. MPs from across political parties have been urging the Government to think again about the changes. Half a million disabled people rely on ESA and we know they are already struggling to make ends meet. Over the last year we have been campaigning against this decision as we believe reducing disabled people’s financial support by £30 per week will not help the Government meet their commitment to halve the disability employment gap.

Read more about the Green Paper and how to get involved with the consultation.

Did you know America’s longest serving President was disabled?

Today is the start of UK Disability History Month, which runs from November 22 to December 22. The theme this year is disability and language. Scope will be marking the month by publishing a number of blogs which tell the stories of disabled people throughout history.

We will explore the language used when talking about disabled people, the lack of recognition of the achievements disabled people have made and asking what impact this has on the way we view disabled people today and the impact this has on the life chances of disabled people.

We have asked young disabled people to tell the stories of historical figures they admire.  Featuring Franklin Delano Roosevelt, Frieda Kahlo and Alfred Nobel –  people who have made a huge impact on our world. We will also feature blogs from older disabled people who talk about how their lives have changed over more recent decades.

The people we have chosen to write about have made such an impact in the world of politics, science and the arts and their legacy lives with us today. Yet despite all they have achieved, why do so few people know they were also disabled?

How many people are aware that Franklin Delano Roosevelt, America’s longest serving President and a political icon, used a wheelchair due to a bout of polio?

Why do we know so little about disabled people’s achievements?

As part of Disability History Month we want to explore why this is the case. Why do we know so little about disabled people’s achievements and why do we not celebrate them?

So much of the discourse around disability is negative and this can have a huge impact on how disabled people see themselves.

We all need role models and people we can look to inspire us and show us what can be achieved and this is particularly important for disabled people who already face prejudice when it comes to finding work or ignorance about what is needed to enable someone to live independently.

20% of the UK population are disabled and yet research carried out by Scope shows that nearly half (43%) of the British public say they do not know a disabled person. We hope that over the coming weeks as you read about the lives of disabled people, past and present, that you will have a better understanding of the lives of disabled people, challenges disabled have overcome but also of the challenges which remain and which prevent disabled people from reaching their full potential.

Find out more about Disability History Month on our website.

Read our blog about Franklin Delano Roosevelt, “Could a disabled person be President or Prime Minister today?

Could a disabled person be President or Prime Minister today?

Layla Harding is part of the Scope for Change campaign network and is a 2nd year Masters student. To mark Disability History Month she writes about Franklin Delano Roosevelt, the longest serving US President, who was disabled as a result of Polio.

I vividly remember during one of my Sixth Form lessons when a teacher passing through my history class as we were learning about President Franklin Roosevelt’s role in World War 2  said “Imagine having a cripple in charge of the country?”

As a disabled person who uses walking aides and sometimes a wheelchair, I felt that this poor attempt at a joke reflected many of the opinion’s FDR would have faced in early 20th Century America. But this was 90 years later. Surely we should have moved on in our views on disability?

I hate the word “cripple”; I find it offensive and derogatory and it has no place in today’s society. Leaving behind terms like “cripple” paves the way for more positive discourse around disability. For a teacher to be using this term, even jokingly, shows how far the disability movement still has to go.

The importance of language

Today marks the start of Disability History Month and the theme is language. It’s so important we have this month to celebrate the achievements of disabled people and raise awareness of the importance of language when we discuss disability.

Many today will not know that one of America’s greatest Presidents, Franklin Delano Roosevelt, was disabled. Not surprising considering he felt he had to hide his disability for fear of the reaction he would get.

In 1921, aged 39, he was diagnosed with polio, resulting in permanent paralysis and leaving him unable to walk without support.  This seemed to spell the end of a promising political career but he went on to become Governor of New York and America’s longest serving President.

Throughout his political career he hid the fact that he was disabled. It was believed that it would be “a political liability if he were seen as this helpless man in a wheelchair” (Jay Winiki). His steel braces were painted black and covered by the clothes he wore. As a disabled person, I was shocked and disappointed to find out the lengths FDR went to hide the fact he was disabled; but I don’t feel he had a choice given the fear of public reaction.

He would use sticks to carry himself along whilst being supported by someone, which made people believe he could walk. He gave speeches sitting down or leaning against a lectern. Photographers who took pictures of him in his wheelchair would have their film confiscated.

Did FDR hide his disability?

Some challenge whether FDR did hide his disability, claiming he would talk openly about his condition and that it was discussed in the media. However, James Tobin believes that FDR didn’t want to be seen in public in his wheelchair because it was “just too potent a symbol of disability”.  Even today society sees a wheelchair as something one is forced to rely upon rather than something which makes it possible for people to get around and live independently, as I do.

Watching the recent US Presidential Election has had me thinking how disabled people are hugely under-represented in politics. Would a candidate be able to be open about being disabled today?  Considering the attitude of my teacher who felt able to use the word “cripple” and the emphasis placed upon Hilary Clinton’s health during the recent US election, I am not so sure.

Being disabled is not something to hide

School should be an environment in which a young person should feel safe and encouraged to expand their minds, and not feel disability is a barrier to achieving whatever they want.

For a teacher to make this comment was wholly inappropriate. Figures would suggest that few in the teaching profession identify as disabled but reliable data is difficult to find. But we need more disabled people become teachers so that they can show students a more positive view of disability.

I wouldn’t think twice today about challenging  such negative language because like FDR I know that being disabled is not something to hide and does not have to be a barrier to anyone achieving their goals.

Find out more about Disability History Month on our website.

“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.

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

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