“I’m 22 and financially screwed” – help us tackle the disability price tag

Our new report The disability price tag highlights how disabled people on average face extra costs of £570 a month related to their impairment or condition. Many disabled people have shared their experiences of extra costs with us, and the impact that this has on their lives. It’s an injustice that needs to change. In this blog, Piers, a student in Wales, shares his experience. 

I’m currently studying for a Masters in Physical Oceanography. Being at university, surrounded by my non-disabled peers, has really highlighted the sheer amount of extra money that I have to spend, just because I happen to use a wheelchair.

“I’d say that every month I have an extra cost of about £1300 compared to my non-disabled friends.”

Firstly, my wheelchair itself was incredibly expensive and I had to pay for that myself. The wheelchair offered by the NHS was unsuitable for my needs, so I had to pay over £4,800 for one just to be able to get around and go to lectures just like everyone else.

On top of that, on average, I spend another £300 a month replacing parts and maintaining the chair. Even with this upkeep, it needs to be completely replaced every three or four years.

My housing is also more expensive than my friends – the only accessible student housing available is £110 per week, whereas friends of mine pay as little as £40 a week for similar housing.

Travel costs are increased due to the unreliability of public transport, the nature of hills in North Wales and the location of my lectures. I have to spend about £400 a month on taxis just to get around.

Food costs are also higher. I require easy to prepare food, either pre-chopped or in small quantities. My friends can buy items like pasta in bulk or do a large shop and carry it home. Unfortunately as a wheelchair user, it’s really difficult to manage more than a small basket of items whenever I go shopping. So this can increase my monthly bill compared to my friends by an extra £150.

Related to that, because so many shops aren’t accessible, I have to order a lot of the things I need online and get charged for postage. It may not seem much per item but all of those payments add up over the year.

Man holding a basketball on a court playing wheelchair basket ball

Financially, I’m screwed

My income each year is decreasing. Even with a student loan, Disabled Students’ Allowance and Personal Independence Payment (PIP), I still face a monthly shortfall.

It plays havoc with my social life because I can’t afford to do much, and if I do anything I’m worried about its cost. I have to take almost every freelance opportunity to earn any money I can to try to keep myself afloat, which impacts on my studies.

It’s socially exclusionary as well because my friends stop asking me to go do things with them because they assume I can’t afford things, which means I do even less.

Basically I’m 22 and financially screwed. It’s almost impossible to get a part time student job just because I use a wheelchair. I’ll be leaving university with at least £130,000 debt.

Man on a beach in a wheelchair next to a sign that says 'seating on promenade prohibited'

What needs to change

Firstly, businesses have a huge role to play. I’d love it if the items I needed to live independently weren’t extortionately priced. Companies know that as a disabled person I need the item so they can charge whatever they want. And there should be no delivery charge or a minimum spend for disabled customers.

There should be increases to PIP so it’s in line with the reality of these extra costs and investment into accessible housing so that it isn’t a quality that increases prices of housing astronomically. I also want to see the NHS bespoke wheelchair service restored and free NHS treatment – this would greatly reduce my extra costs.

Related to this, there’s the issue of employment. Extra costs aside, people rely on employment for financial security, yet there are many barriers to employment for disabled people – employers’ attitudes and discrimination being one of them.

Help us tackle the extra costs faced by disabled people. Find out more about extra costs, then share our report on Twitter or Facebook.

You can also read more stories or share your own experiences in our extra costs discussion on the community.

Tackling the price tag of disability

Life costs more if you’re disabled.

Our new report, The disability price tag, reveals that disabled people are forced to pay more for everyday essentials.   

From expensive items of equipment or adapted cutlery, to higher energy bills and costly insurance premiums, disabled people face extra costs across all areas of life.

Read more about our research and how we can tackle the price tag of disability. 

The financial penalty of disability

Four years ago we published research into disabled people’s extra costs and began campaigning for change.

Four years on, disabled people still face a substantial financial penalty.

Our latest research finds that disabled people face extra costs of £570 a month related to their impairment or condition. For one in five disabled people, these costs amount to over £1,000 a month.

This is on top of welfare payments such as Personal Independence Payment (PIP) designed to help meet these costs.

This disability price tag leaves disabled people with less money to spend on other things, and unable to afford the same standard of living as non-disabled people.

After housing costs have been met, almost half (49 per cent) of disabled people’s remaining income is spent on disability-related costs.

Even for disabled people in work, average monthly extra costs are £492. And across the country costs vary substantially, from an average of £482 in the East of England to an average of £632 in Scotland.

What are the types of extra costs disabled people face?

Disabled people we talk to tell us that they face extra costs across many areas of their lives. These costs broadly fall into three categories:

  • Paying for specialised goods, like a wheelchair, a hoist or adapted cutlery
  • Having to spend more on everyday things, like heating or items of clothing
  • Paying over the odds for things, like insurance or accessible taxis

Marie is just one of many disabled people faced with extra costs. She uses a specially adapted wheelchair which needs replacing, but this would cost her £9,000. Marie and her husband also recently spent around £4000 on a specially adapted kitchen.

The extra costs of disability mean disabled people are less able to build financial resilience. They make it harder for disabled people to get a job, pay into savings and pensions, and participate fully in society.

What needs to change?

We cannot afford to ignore this problem.

Government, regulators and businesses all need to play a role in tackling the extra costs of disability.

We need action to ensure disabled people have the right support to help with extra costs. PIP helps with some of the additional costs of disability – but too often the PIP assessment fails to capture the extra costs many disabled people face.

We want to see an overhaul of the assessment so that disabled people get the support they need to help meet disability-related costs.

We also need to tackle the drivers of extra costs. We know disabled people are often underserved as consumers, leading to increased costs for essential goods and services like energy and insurance.

Today we are calling on businesses and regulators to set out what they will do to ensure disabled consumers are not paying over the odds.

What will we be doing next 

We will be reporting annually on disabled people’s extra costs to assess any changes over time. We will also be publishing research later on this year into the additional costs faced by families of disabled children.

What are your experiences of #ExtraCosts. Share your experiences in our extra costs discussion on the community.

What do recent announcements on PIP and ESA mean for disabled people?

Our welfare system plays an essential role in supporting disabled people to be more financially secure.

Personal Independence Payment (PIP) for instance helps disabled people to cover some of the additional costs faced as a result of an impairment or condition. For disabled people who are out of work, Employment and Support Allowance (ESA) is important in helping to meet day-to-day costs.

Over the past few months there has been a lot of attention on PIP and ESA. Here we look at what’s been happening and what these changes mean for disabled people.

High Court ruling on PIP

Back in April 2017 the Government made changes to PIP that tightened up access to the payment for many disabled people. We campaigned against these changes, which made a crude distinction between people with physical impairments and mental health problems.

Then, in December 2017, the High Court ruled that some of these changes were discriminatory and should be scrapped.

The Government last month said that it won’t be appealing this decision and that it will be reviewing all decisions relating to PIP awards since the payment  was introduced.  They estimate that up to 220,000 disabled people will receive backdated payments where necessary.

This is a welcome decision, as we know PIP is a lifeline for disabled people. In research we carried out with over 500 recipients of either PIP or DLA, 58 per cent said that even a small reduction in their PIP award would have a significant impact on their ability to live independently.

What does this mean for disabled people?

  • The Government will review all PIP assessment reports to identify individuals who could be eligible for a backdated payment.
  • This includes people who were not eligible for PIP following an assessment.
  • No one will need to go through a repeat assessment.
  • The Government has not yet announced when the review will start, or in what order claims will be reviewed.

PIP and ESA assessments

This week, the Work and Pensions Select Committee published a report following an inquiry in to how PIP and ESA assessments are working for disabled people.

This made recommendations to Government to improve the way that applications and assessments for PIP and ESA are carried out, such as using more accessible forms of communication and offering home assessments.

The Committee also put forward ideas to make sure decisions about disability benefits are fair and transparent. These include recording assessments, letting claimants know which pieces of evidence have been used to make a decision, and allowing individuals to review their report during the assessment.

We welcome this report and want to see Government act quickly to put these measures in place. However, it is clear that both the PIP assessment and Work Capability Assessment (WCA) for ESA are not fit for purpose and need urgent reform.

We want to see the PIP assessment replaced with an assessment that properly identifies the range and level of extra costs disabled people face.

We also want to see the Work Capability Assessment replaced with a new approach which recognises the full range of barriers that prevent disabled people entering and staying in work.

Reforming both of these assessments is crucial in ensuring disabled people are getting the right support – whether with disability-related costs or whilst out of work – and are able to live independently and participate fully in society.

What will we be doing next?

It’s vital our welfare system works for disabled people. Following the Government announcement on PIP and the Work and Pensions Select Committee report, we will be continuing to campaign for reform of both the PIP assessment and the WCA

If you have any concerns about your payments, you could contact Scope’s helpline for free for more information

Any new assessments need to be shaped by disabled people’s experiences. We want to hear about your experiences of applying for PIP and ESA. If you’d like to share your story, please comment below or email stories@scope.org.uk.

Just because I’m disabled, doesn’t mean my boyfriend has to be

Online dating has opened up new ways for people to meet and find love but for disabled daters it also brings preconceptions and challenges. For Valentine’s Day Michelle from Liverpool shared her experiences with us.

At school I was very sheltered, I never felt disabled until I went to a mainstream college. Nobody else in my class was disabled and it was a bit of a culture shock. I was in a class with 17 other girls and as difficult as it was for me, I also think it was difficult for them because they’d not grown up around someone who was disabled.

A lot of people I was around in college believed that if you were disabled you’d never have a boyfriend or never want a boyfriend. They’d say things like “you haven’t got a boyfriend, have you?” but actually, at the time I did. When they found out they’d then assume that obviously he must be disabled too. But just because I’m disabled, doesn’t mean my boyfriend has to be and in fact, he wasn’t.

Once you talk to a person and they get to know you, they get to know you as a person and it’s a lot easier to break down those barriers. But unless they take the time to get to know you, it’s hard. That can be especially hard when it comes to dating.

Woman smiling
Michelle’s had some awkward dating experiences

I was born like this, it’s not special, it’s not different, it shouldn’t be an issue

I’m single at the moment and I do find dating difficult. Online dating is particularly awkward as I have to explain that I’m disabled. If you walk up to someone in the street they can see it straight away but online I never really know what to say because to me it’s not spectacularly different. I was born like this, it’s not special, it’s not different, it shouldn’t be an issue. But you never know how someone else is going to react.

Whenever I meet someone online I let them know I’m disabled by saying ‘I’ve got Cerebral Palsy which means I’ve got a slight limp.’ One time I went for a drink with a guy I met online and when I got there he said to me:

“You said your limp wasn’t really that bad but it is.”

I was like wow, what do you even say to that? I said, “no I don’t think it is that bad”. In what world is it okay to say that? You would never say to someone, “you’re not as good looking as your picture”. Unsurprisingly, I didn’t see him again after that.

I think it would help if people were generally more open minded about who they date; get to know the person, don’t be so superficial. I know to a lot of people looks are really important – and they are to me too – but if more people got to know a person rather than basing everything on what they look like it would make things a lot easier.

It’s important to find someone attractive but looks fade and a personality doesn’t. If you’re going to be with that person, they’ve got to be a good person. To me that’s a lot more important than what a person looks like.

Dating will always be difficult whether you’re disabled or not. I don’t think there’s anybody who doesn’t find it awkward. But if you do need some advice then Phil Lusted’s tips to end awkward dating moments is a good place to start.

I haven’t got anything planned for Valentine’s Day this year, I’ll probably watch a film and eat some ice cream. It’ll definitely be a lot better than some of the recent dates I’ve had.

Want to read more, check out our A to Z of sex and disability. 

You can also discuss sex and relationships on the online community.

 

Letter to Louis: a mum’s story of her son with CP

“I’ve never quite known how to explain what our daily life is like. I wanted to write how it is in order to give others a greater understanding of disability and caring. And to be totally honest, I wanted to write something that would make people consider being Louis’s friend. So here is me introducing you: Louis, this is your story. Readers, this is my son.”

Fighter

Alison White’s memoir of bringing up her son Louis covers the first 18 years of his life. It’s written to him, even though he doesn’t have the capacity to understand his mother’s writing.

From the beginning Alison White is brutally honest. When she first sees her son in the intensive care baby unit, she thinks, “I would not have chosen you.”

The name Louis means ‘fighter’, according to the baby names book Alison and her partner Greg used. It proves to be prophetic. His first Christmas present is to be able to come off oxygen and to bond with his mother for the first time.

The things people say

One of the things that I found most shocking about the book is the callousness or perhaps carelessness of people’s reactions to a mother with a disabled child:

  • The woman from the parents group talking about how ‘perfect’ her own child is.
  • The nurse who calls Alison ‘Ermintrude’ when she brings her expressed milk to the intensive care baby unit.
  • “Look at him. That’s an apology, that is!” says another nurse.
  • From Louis’s own grandmother: “There’s something not quite right about him. He’s not like any baby I’ve come across before.”
  • The homeopath who attributes Louis’s cerebral palsy to his father not being present at the birth.
  • The shoe shop worker who says that it is not her company’s policy to sell shoes to people who cannot walk in them!

Celebrate every step

Scope used to have a child development tool called Celebrate Every Step. This was a way of marking the tiny developmental milestones that were missed by mainstream ways of assessing child development.

After so many battles, Alison begins to see the way forward:

“All those things that we take for granted like being able to walk, play, write, get dressed, wipe our bums, brush our teeth, tie our shoelaces, chew our food, blow our nose, lick our lips. You still can’t do any of these things. We help you to do everything and little by little, at a pace that is imperceptible, we make progress with some things. Other things will never come. The damage is done.”

Alison finds a music therapist from Nordoff Robbins who unlocks Louis’s love of music. Louis can sing his own name before he can say it. As Louis begins to express himself, his personality and his obsessions come to the fore. He likes to carry maps with him wherever he goes. His bedtime routine consists of his mother having to pretend to go for a bike ride before he can settle.

Presents of life

Louis’s birthday wishes become more and more eccentric: for his 10th birthday he asked for a Henry Hoover; for his next he wants an escalator! One Christmas he asked for a Soundbeam, an inclusive musical technology system used in sensory rooms which costs thousands of pounds. When his mother tries to explain that this is impossible, his response, which could almost be the motto of this book, is: “You could try.” Alison does try. She contacts Soundbeam who offer to lend a system over the Christmas holiday so Louis does get his wish: he gets a Soundbeam for Christmas!

18 plus?

For his 18th birthday, Louis and his mum get an unwanted present: no more respite.

“As you turn at 18, as we were told, are respite has been cut to nothing, gone. Yesterday you were a child and today you are an adult and everything will change with social services again but nothing has changed with you. You still need all of your care, but nobody seems to be able to tell us anything. We are not going to worry. We are having a party and your parties are known as the best.”

Letter to Louis by Alison White is published by Faber on 2 February 2018.

Win a copy of the book!

We have 10 copies to give away. To be in the draw,  post the things people say to parents of disabled children on our online community. 

Terms and conditions

Only one entry per person will be counted. The prize draw closes on 10 February 2018 at 10am. The winners will be chosen at random after this date and notified via social media. Books can only be posted to addresses in the UK and no cash equivalent or alternative prizes will be offered. This prize draw is not associated with Facebook or Twitter.

Why BBC Class Act is an exciting step forward for disabled actors

BBC Class Act is a nationwide development programme which aims to support and raise the profile of disabled actors. Last week, we were lucky enough to attend the launch party and talk to some of the talented people involved.

On Monday, we shared a blog about Silent Witness and how amazing it is to see better representation of disability on screens, as well as a variety of exciting roles for disabled actors. We want to see more of this, which is why we’re fully behind the new BBC Class Act programme.

Last August, the BBC launched a nationwide search for talented disabled actors. From over 350 audition tapes, 32 people were were selected to attend an intensive three day skills workshop led by BBC directors. The actors were given lessons in everything from audition and camera techniques to help with their show reels, with the aim of improving their chances of being cast in more roles. At the launch, Piers Wenger from the BBC said:

“I hope the talent you see encourages you to consider disabled talent for a manner of roles. It’s crucial that all of us in the industry work collectively to nurture and include disabled actors so that we can see increased representation on our screens.”

Carly Jones, one of the talented actors who took part, tells us why this is so important to her

Carly sat on the sofa with a union jack pillow

Before this, I’d accepted that acting wasn’t my destiny

Before I became an Autism advocate, I was an actor. Autistic people, like me, have what many professionals call “obsessions” and what the kindest professionals call “special interests”.  Mine was definitely acting.

Aged four, I would be gently placed behind the sofa every time I stood in front of my parents’ TV, wanting to be the performer. As soon as I could read, Teletext became my very first auto cue!

This led to being Mary in the school nativity, attending Ravenscourt Theatre school as a teen and eventually, becoming a frustrated actress in my 20s, snatching occasional talking parts in a sea of supporting roles.

Chasing this dream wasn’t compatible with a busy life as a divorced mother of three daughters, two of whom are also Autistic.  So I decided to put my “special interest” into a box.

It was hard. I always felt more comfortable on stage than I did in everyday situations because I knew what I was meant to say and was prepared for the reply. But I accepted that acting wasn’t my destiny and moved on.

Carly looking to the side, against a dark background
Carly had put aside her dream of acting, until she took part in BBC Class Act

When I saw the BBC Class Act advert, my instant thought was “Ah I wish this had been around when I was younger” and I got on with my routine, but kind friends kept nudging me and eventually I thought “Blow it, I’ll audition!”

When I had a quiet hour at home alone, I taped my audition and nervously posted it “unlisted” on my YouTube channel. I planned to remove it later and never think about it again, but by some twist of fate, I was chosen!

Disabled actress Carly wearing sunglasses and a top that says autistic girl power

The course felt like a celebration of diversity

On the first day, I was pleasantly surprised by how different we all were. There were actors with all sorts of different impairments. Also a large percentage of BBC staff and organisers were disabled – something which I naively didn’t expect.

We had three action packed days. We auditioned, did camera work, filmed our scenes and showcased our work to our directors. Surprisingly it was not half as terrifying as I expected! The subconscious worry that this was just a box ticking exercise was quashed – this event really showcased a genuine desire for change and a celebration of diversity.

Truly it was easy to forget that we were a group of ‘disabled actors’. The actors there were extremely talented and it was clear that this initiative was set up to support talented actors, who also happen to be disabled. Rather than “let’s get some disabled people and help them act”.

I am so grateful for the three days of total support, encouragement and confidence the BBC gave me. I’m excited to see where this progresses, not only for my own personal goals, but for disability representation in the media as a whole! And maybe, just maybe, my Autistic “special interest” happens to also be a talent.

If you’re a disabled actor and you’d like to share your experiences of working, you can get in touch with the stories team.

Why tonight’s Silent Witness story is just what the industry needs

Disabled people and their stories rarely appear on TV or in films. Then, when they do, non-disabled actors are often cast to play the roles. That’s why we’re so excited about the latest Silent Witness story which will be broadcast on BBC One tonight and tomorrow.

The story – One Day – is told across two episodes and tells the story of Toby and Serena who are both disabled. They’re played by actor Toby Sams-Friedman and Rosie Jones, a brilliant comedian in her first acting role.

The story is gripping and emotional and while it’s billed as a story about hate crime, it also shines a light on a variety of issues that disabled people face, not to mention the seeming lack of urgency when it comes to addressing those issues. It also features an incredible performance from Liz Carr, a regular on the show.

Our helpline team were consulted on the script and on Tuesday, we were lucky enough to attend a screening of the episodes at BAFTA. In the Question and Answers that followed, we heard from Tim Prager who wrote the episode and actor Liz Carr. Afterwards we also chatted to Rosie Jones, who plays Serena in the episodes. Here’s what they had to say.

Rosie Jones:

“I wanted to do it justice for all the disabled people in that situation”

I come from quite a higgledy-piggledy background because I actually started behind the camera working in comedy and entertainment. Then I decided to do stand-up comedy, and along with that comes acting. I went for this role and somehow with no acting experience, I got it! So yeah, it’s my first acting job but I really enjoyed it.

The story is incredible, it’s hard going and it tackled a lot of tough subjects. I was quite worried that I wouldn’t be able to do it justice. But actually, I wanted to do it justice for all the disabled people in that situation. It’s incredibly important to tell this story, we need to make people more aware. And it’s so important that disabled actors are playing the roles. You can get the best actors but they don’t know what it’s like to be disabled. I do and hopefully I bring something to the role.

A women stands in a doorway looking worried
Rosie Jones, as Serena, in the first episode of One Day

Tim Prager, writer: On hiring disabled actors

“Just do it”.

I’ve known Toby since he was a little boy, I’ve watched him grow up, so it was easy for me to write that character. I have a son with cerebral palsy so it was easy for me to write Serena. What I was hoping to do with it, is to demonstrate that there is a place for all of us. That’s it.

There needs to be a will to tell stories about all sorts of people. Liz has been on the show for 6 years. The critical issue for me was that she was in it and she was a regular in it. There will always be a disabled character, whether [the story] is about disability or not. We’ll just put them in it because they can do other jobs.

[As a writer already in the industry], I’ve laid down the gauntlet and said I’ll work with disabled writers and bring them up to a technical skill level that makes them available to work on mainstream shows. And that’s what needs to happen, we need to get to a place where [all] people write all the shows that people watch.

It comes down to people saying, okay enough, let’s do it, let’s do it now.

Liz Carr, who plays Clarissa in the series:

“You’ve got the right people telling the story for a change”

It was so important [to do this story] because I don’t think that, other than on something like Panorama, I don’t know that we’ve seen some of these things on TV before.

These episodes are expressed as being about disability hate crime and really, they’re about the value we place on another human being.

Tim, comes at it from a place of experience as do we, as disabled actors. When we say ‘we should have better representation on TV’ it gets a bit boring – these episodes show why. And you’ve got the right people telling the story for a change.

There are lots of disabled people, people who championed this kind of episode and it’s a celebration. I guess the issue is, there’s so much to be done and we want it done now, I’m so impatient. Disabled actors have got to get more experience so we get there.

The performances across the board in this episode are stunning. The more we do it, the more people who work with us realise that this isn’t so bad.

Silent Witness One Day will be on BBC One at 9pm tonight – Monday 29 January – and tomorrow. 

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. 

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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