Tag Archives: support

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.

When I became disabled no-one would hire me, but Scope helped me find a job I love

Simone never had a problem looking for jobs before she became disabled. She had good references, experience and qualifications, but when she developed repetitive strain injury, it seemed like none of that mattered. After 15 months of getting no responses, Simone had lost her confidence and her hope. In this blog, she talks about how Support to Work helped her turn things around.

I developed repetitive strain injury a few years ago, a condition which affects my arms and my hands. My employer did try to make adjustments – things like speech recognition software and an adapted keyboard – but it got to a point where being on a computer even for 20 minutes caused so much pain. So, I made the decision to change career.

I didn’t think finding another job would be too difficult. I knew I wouldn’t be able to do lots of computer work, but I had so many transferable skills. But after 15 months of applying for jobs with no response, I lost hope. It got to the point where I was just applying for anything.  It didn’t matter what it was or what the pay was, I was just desperate to work. But I still couldn’t find someone to employ me.

A woman stares into the distance, in front of a bus stop
Disabled people, on average, have to apply for 60% more jobs than non-disabled people.

It was probably the lowest point of my life

It really knocked my self-worth and my self-confidence. You start to feel like you’re not worthy of being employed despite having a great career history. I felt like all my qualifications had been for nothing.

I felt lost, and when you get to that point, you need someone who can sit down with you and go “Okay, so these are your strengths and these jobs would suit you.” But I couldn’t find anyone willing to help. One agency told me “It’s unfortunate but employers will look at you as a liability.”

Then I got in touch with Scope.

The right support turned my life around

They were really quick to get started. When the employment adviser, Zaid, looked at my CV he said, “Wow, this is brilliant. I’m confident that we can help you.”

A women holder a file with office behind her

“I felt a sigh of relief. It felt like someone finally had my back, after months of feeling so alone.”

The main thing that Support to Work helped me with was my confidence. Because my confidence had taken such a huge knock, I didn’t feel like an employer should employ me. I didn’t think I was worth it. But when Zaid made so many nice comments about my CV and gave me so many ideas for what I could do, I started to believe in myself again.

I think I’d been coming across as negative on applications, but he helped me find the right approach to tell employers about my condition and talk about what I can do with simple adaptations.

With my new-found confidence, I applied for a role as Operations Assistant and I got an interview straight away. The interview went really well and I was offered the job! I felt uplifted. I was so happy. I was smiling for days.

For a long time, I couldn’t see a future but Support to Work really turned my life around.

Two women and a man chatting in an office, holding mugs
If you’re a disabled job-seeker, Support to Work can help you build confidence and develop skills for your job search.

My advice for employers

I love my job and I feel like my employers have exactly the right attitude. At the interview, I talked about my condition and they said, “You’ve got the skills we’re looking for, it won’t be a problem”. It put me at ease straightaway. I wish all employers thought like that when it came to hiring people.

Once in work, employers should make conversations about adjustments easy. In my current role, I feel confident that I could ask for changes if I needed them. I’ve got an open communication with my manager so if I do have any problems we can find a way to work around it. I also think they should be open to doing things differently. At work, I’m not afraid to say, “Look this is a bit much, can we do it a different way?”

Another piece of advice is to take advantage of schemes like Access to Work, which paid for my adaptive equipment – things like dictation software and an adapted keyboard – it hasn’t cost my employer anything and it enables me to do my job well.

Ultimately, I want employers to look beyond someone’s impairment or condition and focus on the skills and experience that they would bring to the role. Just because someone is disabled, doesn’t mean they won’t be an asset for your organisation.

Support to Work is funded by Virgin Media as part of our three year partnership to understand and tackle the issues disabled people face getting into and staying in work.

Our ambition is to reach one million disabled people with employment information and support by the end of 2020, so they can get into work, stay in work and realise their career ambitions.

If you’re a disabled job seeker, you can sign up to Support to Work on Scope’s website.

“I have problems with my mobility and I’m at home every day. As a result, my energy bill has shot up”

Our new report, Out in the cold, reveals the high costs many disabled people face for their energy. 

Over a third of disabled people say that their impairment or condition has an impact on their energy costs. Many disabled adults have worried about paying their energy bills, and many disabled households are living in fuel poverty. 

This follows our research published last week which found that on average, disabled people face extra costs of £570 a month related to their impairment or condition.  

Paying more for energy is something that Lynley knows all too well. When she became disabled her energy costs shot up. In this blog, Lynley talks about the impact this has had on her life.

Three year ago I suffered a sacral spinal fracture due to early-onset osteoporosis, which damaged nerves and has left me with permanent neurological pain.

Before I became disabled, I never gave the heating a thought. It wasn’t on very often, but things are different now. I have problems with my mobility and I’m at home every day. As a result, my energy bill has shot up. 

When you can’t move around, you feel the temperature much more and being cold affects my pain levels enormously. I have to wear extra layers of clothing to keep warm and I need the heating on constantly.

I also have an electric blanket for my bed and an electric heat pad which I use to help with my pain. I use electricity to charge my electric powerchair which I need to use to get around outside the house. This needs charging frequently so it’s another additional energy cost.

My bill is so much higher than before. Coupled with the loss of my income as a teacher, this has made ‘getting by’ very difficult. Personal Independence Payment (PIP) helps but there is very little money left over for anything else. I have to prioritise heating so that I’m not in pain.

Life is now very different

Since becoming disabled, my living standards have changed dramatically. I was a professional secondary school teacher in a large comprehensive and was managing five members of departmental staff. I had a large amount of disposable income and enjoyed a fairly busy social life. Things are now very different.

I’m unable to work and now try my best to manage on my benefits  and my small pension but it is very difficult sometimes. Energy costs take up a substantial portion of my income. It’s even harder where I live because we are unable to get mainstream gas and have to rely on oil central heating which is extremely expensive.

Any kind of social life is extremely difficult, holidays are a luxury and disposable income is now virtually non-existent.

What would help

It’s not fair that disabled people who need more energy and who might be on lower incomes  have to meet these extra costs themselves.  There should be more support and awareness. I haven’t received any form of financial help with my energy costs.

Benefits like PIP are there to supposedly fill the gap but it is insufficient to really make a difference. I would like to see a different energy tariff applied if there is a disabled person within the home, much the same as the council tax rebate we are eligible for.

That would make a big difference to my quality of life.

Help us to get people talking about the extra costs. Share our report on Facebook  or Twitter using the #ExtraCosts

We also have information about support with your fuel bills

Whatever the reason you’re having a ‘blue’ day, I’ve learned that talking is one of the best things you can do

Today, 15 January, is ‘blue Monday’ – the so-called ‘most depressing day of the year’.  For Josh, feeling ‘blue’ isn’t restricted to one day a year. In this blog, he writes about accepting his mental health struggles and why talking to people is one of the best things you can do.

For me, a lot of days feel like ‘blue Monday’. I have anxiety, depression and borderline personality disorder. I haven’t been in a good place the past few months. My anxiety sometimes makes it difficult to be happy. Over the years I’ve found good coping strategies. Talking to someone was one of the best things I ever did and now I encourage others to do the same.

I first started thinking about mental health at the age of thirteen. In the beginning there was no one to help me because I was just seen as a ‘problem child’. When I told teachers that I was struggling, they didn’t take me seriously. Once, I was in an exam and I told the teacher that I was feeling sick due to anxiety. They told me to “grow up and stop being pathetic”. That sent me over the edge. I felt alone for the first time. I failed the exam and I ended up in the hospital for an emergency appointment.

A turning point

That was a turning point for me. It happened in front of 180 people at school, so not only did it impact me, but it also impacted a lot of other young people who could have been going through similar things.

After that incident, everybody started treating me a bit differently and understanding me more. I realised that I was never going to get better if I didn’t talk to people about it. That was when I really started coming to terms with myself, my own needs and my own mental health.

Smiiffy, a young disabled man, smiles by a microphone

Destigmatising mental health

I’m very open on social media. I talk about mental health in a way that destigmatises it. I make people laugh, at the same time as showing that it’s a serious thing.

I wish people were less afraid of honesty. Even in music, a lot of things about mental health are censored. YouTube won’t promote my music because I’ve mentioned that I’ve felt suicidal or depressed, and Facebook won’t promote it. It really frustrates me. Especially when you see these platforms marketing things that you don’t need. And yet I can’t promote something with a positive message.

I often feel isolated. Sometimes I just prefer to be alone. I constantly feel alone in a crowd, even if I’m surrounded by good friends. I feel like I don’t fit in, which is really difficult sometimes. I posted that on social media. I wanted to start accepting my mental health and raising awareness, letting people know that it’s okay to talk about it and that there’s help out there.

Josh sits alone in a busy pub

Talking to people can help

In most families, there’s at least one person who will understand. The same goes for friends. I try to surround myself with good people. It might be difficult at first, but I’ve learned that talking will help in the long run. People will try to find a way to help you through hard times.

If you’re still not ready or not sure if people will understand, talking on social media can help things improve. You can be anonymous and sometimes that makes it easier to talk about the fact that you’re struggling, because you know that nobody will know who you are. It can also help you find like-minded people.

Letting people know that they’re not alone, and that there are other people there who are wanting to listen to them is incredible. I know from my own experience that it can be hard at first to talk to people around you, so I always say that people can talk to me. I’m very open on social media and lots of people do reach out.

Over the years, thousands of people have messaged me and said positive things and told me that I’ve helped them open up about their own mental health, which is incredible. For people who struggle to talk or feel like they’re not going to be heard, I want you to know that you will be heard, and that speaking out about what you’re going through can really help.

If you’re having a difficult time with your mental health, you can speak to your GP or contact organisations like Mind for support.

If you’d like to share your own experiences, get in touch with the stories team.

Connect with Josh on Twitter: @JoshSmiiffy 

What the past year has taught me about kindness

The start of a new year is often a time to reflect. When Pippa acquired a long-term condition at university she felt really isolated, so she set up Spoonie Survival Kits to reach out to other people with chronic illnesses. It has been a huge success and in this blog, she reflects on how the incredible kindness of others has changed her life.

If there’s one thing the past year has taught me, it’s that even the smallest acts of kindness can make the biggest difference.

I became chronically ill halfway through my time at university and it was a bizarre experience. Being surrounded by mostly non-disabled peers had me questioning not only what my future would hold, but my self-worth too.

While I tried to adapt, I couldn’t help but notice what a lack of support there was for people like me. There are hundreds of wonderful programmes and schemes for young people in hospitals, but what about the thousands of people at home, who are too unwell to leave the house?

Living with a chronic illness can be incredibly lonely. You quickly realise just how significant the small things can be.  Even on the more difficult days, a small gesture can remind you that you can do this. With this in mind, I set up ‘Spoonie Survival Kits’.

I wanted people to know they weren’t alone

‘Spoonie’ is the slang term for someone living with chronic illness. The kits contain treats and surprises aimed at brightening someone’s day and reminding them that they are not alone, that they haven’t been forgotten.

The kits are sold online and half of the sales money is donated to charities, with the other half being put back into sustaining and growing the enterprise. In the last two years alone, we’ve sent over 700 kits to recipients all over the world, and raised over £3,500 for various charities. And the demand just keeps growing!

Pippa holding one of the gift bags
Pippa holding one of the ‘little bags of happiness’

Creating a community of kindness

Spoonie Survival Kits has taught me a humbling amount about the value of selflessness and generosity too. Since the very beginning of the project, countless people, many of whom are severely unwell themselves, have come forward to ask what they can do to help.

If it wasn’t for the support and encouragement that I’ve received, I’m not sure if Spoonie Survival Kits would be what it is now. The kindness of others is quite possibly the best source of motivation a person could wish for, and something that I will never take for granted.

We’ve found that the people who receive the kits often want to support our work, creating a cycle of ‘paying it forward’ – when the kindness shown toward you, makes you want to show kindness towards somebody else.

A circle of hands wearing bracelets around the Spoonie Survival Kits logo

What keeps me going

Spoonie Survival Kits has been a game-changer for me personally. It  gave me back my sense of purpose at a time when my physical health made me feel pretty useless.

The most rewarding aspect of the project in my eyes, has been developing accessible and remote volunteering opportunities, inclusive of chronically ill people. Everybody who works on the project has a long-term condition, and we pride ourselves on offering volunteer agreements specifically tailored around people’s individual circumstances. Many of the items within our kits are handmade by talented crafters living with chronic illnesses.

Having such a talented and dedicated team of volunteers is just one of the reasons why I love being involved with Spoonie Survival Kits, and our kit recipients often benefit all the more from knowing that those behind the enterprise are in similar positions to themselves.

When I’m having a tough symptom day and feeling sorry for myself (and believe me, there are plenty of those days), it sometimes takes just a simple nudge to encourage me to keep going. My new year’s resolution is to continue ‘paying it forward’, and I wholeheartedly encourage you to do the same!

 Find out more about Spoonie Survival Kits and support the project. 

Do you have a story you’d like to share? Get in touch with the stories team.

Why I’m determined to make the world a better place for my daughter

The start of 2017 was a dark time for Christie. Her daughter Elise had just been diagnosed with cerebral palsy and without any support or information, Christie felt really alone. A year later, with a new positive outlook, she is a force for change. In 2018 she’s determined to keep making the world a better place for her daughter. In this blog, she shares their journey.

My daughter Elise was born prematurely and it was the worst time of my life. The doctors didn’t think she was going to make it but she did. I remember the first time she opened her eyes. After a month of being in hospital, we got to take her home and I was so happy.

The doctors said there hadn’t been any brain injury but she wasn’t developing as expected. So, after lots of meetings and nine months of waiting, we finally got a diagnosis of cerebral palsy, just before Christmas 2016.

I felt really alone

It was really overwhelming. I didn’t have any experience of disability and I thought it meant her life was over before it had even begun. I thought she’d have no future. I tried to be cheerful for her but my heart was breaking.

I didn’t want people to come over because I didn’t want questions. The first time I took her out in her wheelchair, I cried. I felt like everybody was staring at her. I had days where I just wanted to give up and lock us both away from the world.

That’s when I found out about Scope.

Christie holding up Elise in front of their Christmas tree

I’d been missing all the positives

I wanted to do everything I could for Elise so I called Scope’s helpline because I didn’t know where to start. They gave me so much information. I found out about what was available to us and the different equipment we could use. All these things have helped make life easier. But most importantly, Scope gave me so much hope.

They completely changed my perception of disability. It’s been a whole new life to get used to and I was just focusing on the negatives. Scope helped me to focus on the positives. I’d been missing them all.

You’ve just got to change the goal posts. Elise waving was a massive thing for us and, with her physio, she’s really building her strength up. She’s just got her Peppa Pig wheelchair which she loves and it’s given her so much independence – maybe too much as I recently found out in Asda when she kept wheeling off!

Christie on the sofa with Elise on her lap

I’m determined to change the world for Elise

I still worry every day about Elise’s future. I worry about people’s attitudes, I worry that she’ll want to join in with things but she won’t be able to. The world puts up so many barriers and you don’t realise it until you’re in that world. And it is a different world.

I’ve been sharing our story this past year and I want to keep going.  I feel less alone knowing that there is a community out there and people who care, people who’ve been in this situation.

We’re in a much better place this Christmas but life is still much harder than it needs to be. There should be more support but there’s not and accessibility is a big problem. Just because you have this diagnosis, doesn’t mean you don’t deserve a chance.

This year I want to keep changing attitudes about disability, I want to make things more accessible, I want to give Elise everything she needs – I’m determined that nothing’s going to stop her!

I started a Facebook page called Elise Smashed It. I want everyone to see what an amazing little girl Elise is. I hope it raises awareness and changes perceptions about disability. I want to help other parents too and show them that there is hope. It might not be the life you were expecting, but it’s not the end – it’s just the start of a different life and you’re not alone.

These are my goals and that’s what I’m going to focus on this year. I hope you’ll join me.

Too often, disabled people and their families struggle to access the support and information they need. Attitudes towards disability can be a problem too.

Christie shares her story because she wants to change that. Please help by getting involved with our What I Need To Say campaign and following Christie and Elise’s journey on their page Elise Smashed It. 

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

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

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

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

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

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

My own experiences of loneliness

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

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

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

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

Shani smiling, stood on a cobbled street

Ending loneliness

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

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

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

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

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.

I still don’t have the support I need to live a full life

Josie, from Bristol, was a nurse until 2008, when 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 2008, I was well and working as a nurse. Then I got ill, and just didn’t get better. I was eventually diagnosed with fibromyalgia, a neurological condition which causes pain all over the body.

I then suddenly developed idiopathic anaphylaxis – life-threatening allergic reactions caused by a range of things, from heat to pollen and perfume. It means I need to have a support worker with me when I go somewhere new in case I have a reaction.

My other health problems mean my mobility is limited, and I’m often ill in bed for several days at a time.

I recently got an electric wheelchair, which has been amazing and has given me some of my freedom back. I have two children who live with their dad, whom I see regularly. But I still do not have the support I need to live a full life.

Some days I barely get to speak to anyone

At the moment, I get three short visits a day from a care worker to cook my meals, help me shower, and keep the house clean. I get two hours every two weeks “social” time which at best on a good day gets me over the park and back .

It’s not long enough to join in any activities but I value this time hugely as it’s uninterrupted time with actual real conversation, not just “what do you need to eat?” or similar.

My basic needs are met – I’m clean and I’m fed. But I haven’t got enough support to actually get me out of the house. It means that some days I barely get to speak to anyone, let alone have a social life.

If I get an infection and have to ask my carer to pick up a prescription, I don’t get to have a shower that day. There just isn’t enough time.

Josie, a disabled woman, and her daughter

What the right support would enable me to do

A little more support – for example, a support worker to go with me to new places – would give me so much more opportunity to take part in life, but at the moment that feels like an impossible utopia!

People like me, who were professionals and could make a contribution with the right support, are being cut out of the workforce.

Working in an office or a hospital isn’t really possible for me, but I still have skills and experience that I would like to use, if I had the means of doing so.

Everyday equality by 2022

In the end, it is a question of equality. In a fair world, I would have the support I need to live my life, and the opportunity to fulfil my capabilities.

I’d be able to go out and have a social life. I’d have support to do some work, maybe based at home where I would be able to control my surroundings. Instead I don’t feel like I’m living, just existing.

Tell us what living independently means to you  

Scope is calling on the next government to improve social care for disabled people, so they can live the life they choose.

You can read more about Scope’s priorities for the next government and how you can register to vote in this election.

What does living independently mean to you? What would getting the right support from social care enable you to do? Email the stories team and tell us your experience – stories@scope.org.uk

You can also join the conversation on social media by using the hashtag #EverydayEquality.

Why we’re taking on the London Marathon for Scope

Vicky, Louise and Nina are running the London Marathon for Scope – “a charity close to our family’s heart”. In this blog, Vicky, her sister Mell and her nephew Moss, all talk about why raising money for Scope means so much to them, and why they are excited to take on this challenge! 

“My little sisters have decided to run the London marathon!”

They are raising money for Scope – a charity close to our family’s heart.

My eldest son, Moss, has cerebral palsy. Thanks to Scope’s support, and against the odds (prognosis was that he would never walk), he took his first unaided steps when he was almost four. To hold your child in your arms and be told that life would not be the same for him as it was for his peers was the hardest moment in my life. Scope gave us hope.

To be able to walk into school on his first day and be able to stand up in a bar and look at people in the eye when he was older – that was my goal. My son is now more independent than any other lad of his age I know. With the use of sticks he walked into his first day at school and he walks into bars on his feet often! To say I am proud of him wouldn’t even ‘cut the mustard’ (if that’s a real saying?)

This, I know was down to the support of Scope at the beginning of our journey. I am mega proud of my little sisters for doing this. I hope Scope’s support for parents continues as I honestly don’t know what we would have done without them.

“I’m so happy that my aunts are running for Scope”

Scope had a huge impact on my life. If it wasn’t for Scope and the encouragement from my mum I wouldn’t be able to walk unaided now. When I was a kid I was told I would be in a wheelchair for the rest of my life but that’s not the case and that’s down to Scope and my mum.

I’m so proud and happy  that my aunts, Vicky and Louise, are running for Scope. I didn’t realise they knew so much about how Scope helped me when I was growing up, so it’s great they are raising money for Scope. I work at Scope now so I really appreciate where the fundraising goes and how important it is.

I really hope to be there to support them on race day. My dissertation is due though so I don’t know if I can make it, but fingers crossed I can be!

Head and shoulders shot of Vicky and Louise smiling with a field in the background

“I’m really looking forward to marathon day”

I started running last February as I wanted to get fit after having my two children. I started the ‘Couch to 5k’ on my phone. This developed into entering 10k races and a half marathon with my younger sister Louise. Then we decided we wanted a challenge as I was turning 40 this year and we entered the London marathon.

Running for Scope was a natural choice for us because our nephew Moss has cerebral palsy. Without being supported by Scope we really believe he would possibly be in a wheelchair, rather than having the strength and determination to walk with his crutches. Scope also offered my older sister Mell the support she needed when Moss was growing. We met other families who benefited from Scope’s service too and have family friends who have also greatly appreciated the service Scope provides.

I’ve loved training for the marathon with my sister and our friend Nina has been a huge part of it too. It’s been challenging and tiring at times but we have all pulled each other along. When my legs are stiff and tired at the end of a run I think of my nephew and this makes me more determined and motivated to carry on and more proud of him. He is one totally amazing person.

I’m really looking forward to marathon day and running for Scope. Although I’m feeling a little overwhelmed about how many people are going to be there! We really feel that Scope are an amazing charity and we’ve all been working hard to fundraise so that they can continue the great work they do.

Want to help Vicky, Louise and Nina reach their goal? Make a donation on their fundraising page.

If you fancy taking on a challenge, sign up for 2018 or check out some of our other events!