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Disabled People’s Ambitions are Crushed by Savings Caps on Social Care

Often when social care is talked about in the media and by politicians, they portray an image of care homes, residents near the end of their life, elderly people being made cups of tea. But what about those of us who need care from a young age? Who need social care to support us with work, to meet up with friends, to travel, to party? Where are we in this out-dated narrative, the young and aspiring?

The truth is, we’re forgotten about, and the system penalises us too.

Carers or PAs are an essential part of my everyday life. They support me with washing, dressing, using the toilet and preparing meals – and I’m not alone. 

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The Disabled Cost of Living Series: Dealing With the Cost of Living Crisis, One Day at a Time

Millions of people are currently struggling to heat their homes, pay their bills and afford food in the toughest Cost of Living Crisis the UK has seen in 30 years. In our new series, The Disabled Cost of Living, we will hear how disabled people are disproportionately affected, due to their lives already costing more and being valued as less.


I spent most of the drive from my partner’s house to my flat thinking of all the things I could do with the backpay.

A holiday? A whole new wardrobe? A new computer?

Well, not quite. I was daydreaming about paying off debt, an unbroken bed frame and name-brand chicken nuggets. Not quite the luxuries that mainstream media peddles that benefit users get. But a cushion of some kind, a safety net.

But then I had to look at the news.

The rising cost of bills. The ticking clock of climate change. Petrol prices peaking. Cuts to benefits and cold-weather discounts. The cost of living crisis. 

Goodbye safety net.

It’s interesting, trying to get money advice as a mostly housebound disabled person.

I don’t go out clubbing and pay for expensive cocktails. My clothing brand of choice is secondhand. I don’t think I’ve ever even tasted an Avocado let alone put it on toast so that should have saved me already, surely.

When my conditions flare up so badly I’m stuck in bed for days at a time, at least I only have to worry about one room!

Most days start with my cat waking me up for breakfast. Her night shift as my free, furry hot water bottle has ended and now she’s my alarm clock. I make myself an iced coffee for my breakfast and she steals the straw when I’m done. It’s a cheap toy, at least. 

I probably have two different panic attacks before noon.

There’s no way I can afford to pay someone to come in and help me round the house but carer’s allowance goes to friends and family that help, so at least they get compensated.

Help in the shower becomes a bonding, sweet experience with music and jokes and shower stools. Scrubbing the kitchen down is when I sit and gossip with my mum. Those moments don’t cost money – as long as I don’t look at my bank account and the direct debits.

When stress about the future is a constant thought, you get practice at shutting it out. Living as a disabled person can cost you an extra few hundred pounds you don’t have, but there’s a new cake show on Netflix! And streaming services split between three people is almost affordable, right?

Paper plates and cutlery are cheap in the supermarket and hey, that saves both physical energy and hot water energy. And if you don’t want to turn the oven on then call a cold dinner a charcuterie board and then it’s by choice.

Warmer weather is creeping in, so a lunch of breadsticks and cream cheese can be eaten outside on a blanket – then it’s a picnic! You can even Instagram it to make it seem like your life is together and trendy. The rich make poverty an aesthetic so why not do it while you’re living it? 

Instant 13p noodles don’t seem so depressing when you make it your little nighttime routine with matching mugs and old anime. And the fairy lights aren’t because batteries are cheaper than your bills, it’s just mood lighting.

Denial. It’s the breadline’s best friend.

What else can I do? It’s easy to say to learn to budget better when you’re not living payday to payday. It’s harder when you’ve spent most of your life expecting not to make it this far and now you’re disabled, staring at your rapidly approaching 30s and there’s no support.

So, denial.

I ignore the post piling up by the front door for days at a time. I watch online TV shows and think about which subscription I should cancel. I eat another packet of crisps and a sandwich and think if it’s worth spending my last tenner on a kebab delivery because it’s probably cheaper than using the oven.

I use twitter and think about the news of ministers getting pay rises while I’ve not had my radiators on all winter.

I scroll through TikTok and think about the life the influencer must live before she gets online and says that “not eating at Greggs can save you enough money for a house deposit”. I look at the few treats in my life and wonder if they’re worth sacrificing for savings when there’s always an emergency to pay for.

A taxi trip to the hospital, a replacement mobility aid, helping a friend get food, forgotten debts coming through the mail.

I look at how many other disabled people are facing the cost of living crisis and think how nice it would be to have a snappy one liner to help us all. Just one new trick to pull us all out of poverty.

How often I already share links for DWP advances, council emergency grants, charities to help apply for benefits, places that give out food bank vouchers. I know what brands to shop to get two bags of shopping for a tenner. I know what you should say to get the right points for your PIP appeal. 

I know the only real help I’m getting is from other disabled people in the same boat as I am. I know it’s not enough. 

I know how to put words to paper so hopefully people will understand. I don’t know if the right people are going to listen. I know I am just one voice amidst thousands who are facing this crisis.

The cost of living crisis. The lack of dignity crisis. The no care in the country crisis. The wrong people in power crisis.

I take medication to make me sleep and still wake up in the night, panic at my throat. I hope for a few hours of unbroken sleep. I hope for better headlines when I wake up.

And the next day I do it all again.


Resources

Citizen’s Advice has lots of great guides but these two in particular:

If you’re struggling with living costs gives advice on how you can get help paying for food, rent, what benefits you may be entitled to and how to get help from your local council.

Using a food bank gives details on what to do if you have no money for food, if you’re shielding or self isolating, getting a referral to a Trussell Trust food bank, going to a food bank and what to do if you need to use one again.

Turn2Us Benefits Calculator can help you find out what you may be entitled to claim and also gives a detailed explanation of each different benefit.

The Social Fund covers cold weather payments, winter fuel payments, funeral payments and the Sure Start Maternity Grant that you may be eligible for.

If you are on certain benefits you may also qualify for a Budgeting Loan to help you buy furniture, pay rent, travel costs, clothes and other thins

Jack Monroe’s blog is full of actual money saving recipes that are easy to cook and fully costed. None of that just eat dried pasta bullshit.

Shout is a confidential mental health support service that is available via text. Free, 24/7. Text “SHOUT” to 85258.


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Cerrie Burnell on Why Everyone Deserves to See Themselves in Fairytales

Ever since I was a little girl, my favourite thing to do was curl up with a good book. I gravitated towards fairytales and fantasy because I dreamt of being the adventurous heroine, though like most books I never saw myself represented in them as a disabled child. However, Cerrie Burnell’s newest offering aims to do just that.

Wilder than Midnight is “a bold and evocative new adventure novel from Cerrie Burnell, celebrating difference and found family.” It’s a retelling of Rapunzel, Snow White and Red Riding Hood all rolled into one with one of the main protaganists,Wild Rose, having a limb difference, just like Cerrie.

I was instantly drawn into this idea of fiesty girls and magic so was delighted to sit down with Cerrie over a cuppa on Zoom. What follows below was our conversation, edited for clarity.

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The Disabled Cost of Living Series: How Those Most Vulnerable are Disproportionately Affected

Millions of people are currently struggling to heat their homes, pay their bills and afford food in the toughest Cost of Living Crisis the UK has seen in 30 years. In our new series, The Disabled Cost of Living, we will hear how disabled people are disproportionately affected, due to their lives already costing more and being valued as less.


Recent figures published by Scope suggest that disabled people were more than twice as likely to be unable to heat their homes. They were 3 times as likely to not have been able to afford food. Among disabled people whose living costs have increased over the past 3 months, 47% have said rising prices had a worsening effect on their long-standing health condition. I feel this is not news to us.

National Insurance payments are increasing, so those who earn less are now contributing more before they receive their wage. The rate is now 8.75% and it applies to those who earn more than £9,880

Energy prices are increasing as part of what has been dubbed the ‘Cost of Living Crisis’, the reliance on other countries for energy has not helped the costs, but this crisis was in motion before Russia’s invasion of Ukraine. Disabled people who may require to use electric, gas or other forms of energy more due to their health conditions, will have less money to do so.

The standard charge by companies for supplying utilities per unit has increased 54%. The more units you use, the more you will have to pay.

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Accommodations for Disabled People Aren’t Special Treatment – They’re Basic Human Rights

As a non-disabled person, accessibility is something you never have to think about. Before my disability impacted me, it never crossed my mind. But that is something that needs to change.

Accessibility comes in many forms, from leniency on work deadlines, ramps, lifts, hearing loops to closed captions, access to medical treatment online, digitally, and much more. This variety of ways to accommodate accessibility is one of the reasons non-disabled people don’t do it. They don’t know where to start.

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2022 is the Year of Disabled and Chronically ill Writers – 5 Book Recommendations

Reading is often considered a luxury, who has the time to devour a novel in a weekend when life demands so much of us, all of the time?

However as someone who can spend days in bed and weeks at home, books are just one way to pass the time, and enter another realm of reality, away from my own four walls. To read, whether that is a paperback, a kindle or an audio app, is to be consumed by something else, it can hold a mirror up to your own experiences, or provide insight into another’s. 

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Why are we so Obsessed with “Overcoming” Stories?

Recently, I have found that my social media timelines have been overflowing with ‘overcoming’ stories. People that have ‘overcome’ their traumas, their medical issues, their financial issues, and so forth. 

We are taught to admire the people who came from nothing, the self-made billionaires and the people who put their work above everything else in their lives. While we can all applaud these success stories, and recognise the work that people put into their careers and themselves, it is important to acknowledge that having this same narrative repeated over and over again can be especially harmful to the chronically ill and disabled community. 

Using Molly Mae’s recent ’24 hours in a day’ fiasco as an example, we seem to be spoon-fed this idea that if you want something bad enough, it is achievable – you just need to put the hours in. It doesn’t take a genius, though, to realise that this is not the case for all of us. 

As a chronically ill woman myself, knowing that as a result of my condition I may be unable to have children, I have often found myself thinking “it’s okay, it’ll be different for me” –  even though the reality is quite blatantly in front of me. 

There has long been the narrative that in order to lead a happy life, or to be truly successful, you must ‘overcome’ your burdens, your ill-health, or that you must ‘rise above’ the financial situation you were born into – but what happens when you physically cannot do this? 

These promises that ‘wanting something bad enough’ is enough to make it happen is simply an idea that is setting us up for disappointment. We don’t all have the same 24 hours, the same way that we can’t always ‘overcome’ things – whether that is medically, physically, financially, emotionally, and so forth – and we need to stop pretending that we can, or that it is a rite-of-passage to do so. 

Such a narrative reeks of ableism; disability and health conditions are constantly portrayed as things that are essential to overcome, and when you cannot do this, it seems to necessitate a journey whereby you battle your own demons and have this grand epiphany, that makes you realise your purpose as a disabled person is to share your story and inspire able-bodied people as they gratefully think to themselves “I’m so glad that isn’t me”.

Having a chronic illness means accepting that you cannot always be in control of your work-to-rest balance. On the days that my body feels functional and my pain manageable, I feel a great sense of imposter syndrome, and on the days that I can do nothing but listen to my body’s demands for rest, I feel hopeless – worthless, even. 

There is no tying a pretty bow on that and calling it inspirational, it’s a case of taking each day as it comes, and accepting that I need to allow my body as much of my ‘24 hours’ as it needs. 

If illness and disability is consistently portrayed as negative, or something we should strive to overcome, how are we meant to feel whole when our illness is chronic, or our disability permanent? 

My condition has no cure, and with the pandemic wreaking havoc on surgery waiting lists, my treatment plan has come to a steady halt, too. Pretty, colour-coordinated posts on self-care and motivation can only help you so much when there is physically nothing you can do to change the reality of your health. 

This is my issue with toxic positivity and productivity – we only seem to recognise and applaud success when there is a consistently upward trajectory. With this narrative of fulfilment being so heavily prevalent online, it is no wonder that folk like me struggle so much to accept our own achievements and success, as perceptions of success, ‘overcoming’, and what this should look like is almost always intertwined with good-health and ‘getting better’.

To suggest that the parts of ‘my story’ where I struggle or have to ‘give in’ to my condition are something I should ‘overcome’, is to suggest that I am incapable of truly thriving as a result of my chronic illness, and for tending to my body’s needs. 

My condition is incurable, but it is also not ‘inspirational’ of me to work through it – my condition is simply a part of myself that I am learning to understand, respect, and work with – not ‘overcome’ and thrive from. 

It is essential that we recognise how the expectation that we should persevere and ‘overcome’ everything that life throws at us is an unrealistic and often unattainable standard to maintain. You can be successful irrespective of your health, just as you can be fulfilled and content irrespective of your financial situation. 

I am tired of waiting for the miracle where I am ‘saved’ from my condition, or to be freed from the expectation that all I do is merely an attempt to motivate able-bodied people – “because if she can do it, so can you!”

How we spend our twenty-four hours is not something that can fairly be compared, as no two people’s lives or abilities look the same. 

Comparing ourselves to others and these ‘success’ stories online will only ever set us up to feel inferior or insecure in ourselves and our own capabilities when, in reality, we all achieve things at our own pace, in our own ways, and irrespective of our health. 

The only thing that needs overcoming, here, is the narrative that success necessitates us to overcome fragments of ourselves in the first place.

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Navigating Trend Cycles with a Chronic Illness

Twee is back, and the difference between 2014 and now is that I have a chronic illness and find myself looking onto the aesthetic more skeptically. In fact, living with a chronic illness has found me looking at the constant cycling of fashion trends with a certain layer of cynicism. 

In a world where what is defined as ‘on trend’ is constantly shifting and changing, it is often difficult to navigate your illness alongside this. 

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How Our Fave Disabled Female Activists Deal with the Bullshit of the World

Here at The Unwritten we are passionate about fighting for what we believe in, but we also recognise just how hard it can be keep going sometimes. As it’s International Women’s Day we wanted to remind you just how important it is to look after yourself first and we thought we’d ask some of our favourite women to help us out.

We asked some of our favourite female disability activists “how do you deal with the bullshit of the world?”

Rachel Charlton-Dailey Editor-in-Chief of The Unwritten and Freelance Journalist

@RachelCDailey

Of course I had to start by answering myself, and if I’m honest, I don’t deal with it very well.

I am historically bad at setting boundaries when it comes to taking time off. Just this weekend I declared I was coming off Twitter for my mental health, but I’m already creeping back on. But I’ve found asking my best friends and husband to be tough with me when it comes to that really helps.

Sometimes he literally takes away my phone (but only to stop me from crying, not in a mean way!) while Cath and my bestie Gem will lovingly threaten me. 

When all else fails I grab my coat and my dog Rusty’s lead, and we head to the coast to scream at the sea for a bit. Oh and Stevie Nicks dance parties.

My community is what keeps me going every single day, so over to them…

Lady Tanni Grey Thompson, Paralympian

@Tanni_GT

If there was one thing I wish is that people would understand it’s ableism.  It’s just exhausting explaining to people all the time. So I take a deep breath and defiantly smile and explain how and why ableism is actually a thing.

Lucy Dawson, Model and Advocate

@Ludawinthesky

I think one thing that many of us in the disabled chronically ill community do fantastically well is manage to find a glimmer of humour in almost every situation relating to society’s bullshit towards us.

The ability to laugh in the face of things that are said or done to make us feel horrendous is a pretty powerful coping mechanism and one that I have definitely relied on many many times. 

And for the absolute worst days when there is no comic relief, knowing that an entire community of people who are there in support & solidarity is definitely comforting

Punteha van Terheyden, Journalist and Editor of Lacuna Voices

@vTFeatures

I try not to let the bullshit in the world – or around me – erode who I am. If I lose myself or compromise my core values as a response to the often unpleasant fog of society and the wider world, then all the bullshit I have to cope with has got the better of me and I refuse to let it win.

Frances Ryan, Journalist and Guardian Columnist

@DrFrancesRyan

Jokes. And the relentless belief that the world – in all its shit and inequality and injustice – does not actually need to be this way, and each of us has the capacity to make it better. 

Caroline Mcdonagh-Delves, Deputy Editor of The Unwritten 

@carolinemariemd

Second hand joy. Even when I’m struggling, I look to the amazing activists who surround me and the incredible work they’re doing and the strides they’re making and that’s what gets me through.

Melissa Parker, Freelance Journalist

@MelissaKParker1

I have realised it’s about claiming our identity. So much of being a disabled woman never belonged to us. It’s a process of learning and claiming.

I know from experience that disabled women are torn down, diminished by the abled gaze. I think that’s why I continue on, because disabled children are taught to get on with it – that we mustn’t expect too much – even as we’re expected to give everything to everyone around us. I cope by thinking of the next generation – they will see our words, our acts.

I also take one day a week, at least, off to listen to Beyoncé or Motown or watch a film like Legally Blonde. I need those moments to regroup and feel all the emotions I need to feel to fight on.

Hannah Shewan Stevens, Freelance Journalist and The Unwritten Columnist

@hannahshewans

I find the most comfort in disabled communities, I find rest by talking to other disabled people. Because a lot of my friends are also disabled and/ or neurodivergent and I think spending more time with people who can understand the pressures of ableism and the impact that it has on our general well-being is the most comforting thing for me. 

But also I think I’ve learned a lot about respecting my own boundaries and realising that I don’t need to be informed about everything that’s happening to disabled people all the time.

I used to immerse myself in news related to disability so much that I could never escape the stress of seeing the stuff happening to my community. And I think, learning that the only way I can truly be an active activist is by taking care of myself first, played a huge role in how I’m kind of protecting myself from ableism becoming too overwhelming.

Charlotte Colombo, Freelance Journalist

@colombochar

Humour is my resistance and rebellion. To me, responding to life’s bollocks with jokes and memes sends the clear message that you’re unfazed and that whatever they wanted to achieve didn’t work, and also indicates that you needn’t dignify something so stupid and unfair with a serious response.

Don’t be afraid to shitpost through it.

Cath Poucher, Deputy Editor of The Unwritten

@cathpoucher

I’m not gonna lie, the bullshit of the world really used to get to me and wear me down. As I got older however, I learned to cope with it and not let it get to me as much.

It may sound obvious, but the first challenge is actually learning to recognise the bullshit. Only once I acknowledged what it was, could I then actually deal with it. In my experience acting on the bullshit once you recognise it takes a bit of patience and a lot of “no-nonsense” attitude.

While it may annoy you and make you angry, being all shouty tends to get you nowhere. Stand up for yourself, speak up. Do it firmly, for sure. But everyone is very shouty now, and in my experience shouting just creates more shouting and you end up shouting in an echo chamber. Think of a plan of action, and responses to the inevitable replies so you’re armed and good to go. Hold firm, and stand your ground. Take a deep breath. And go for it.


I think this post has proved two things, disabled women are badasses (like we didn’t already know that) and that there’s no right or wrong way to deal with the ableist bullshit of the world. Whatever works for you is good. Let us know how you deal with it in the comments.

Happy International Women’s Day!


Disabled women are twice as likely to experience domestic violence as non-disabled women. They are also likely to experience abuse over a longer period of time and suffer more severe injuries as a result of the violence. If you can, we’d appreciate it if you donated to Refuge today.


Here’s where you can buy the earrings used in the cover photo

Fuck the patriarchy earrings – Topple and Burn

Millicent Fawcett quote earrings – Three Little Tings on Etsy


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GCSE Requirements for University are Further Proof the Government Hates Disabled People

Trigger warning: COVID deaths, ableism in the education system and being excluded from it.


In their latest brainwave to get the public on side after a colossal series of blunders that have made us a worldwide laughing stock, the government have announced plans to shake up higher education, in a response to the Augar Review of Post-18 Education and Funding.

The plans (first reported in The Daily Telegraph) suggest minimum entry requirements for university students in a bid to get rid of “low-quality courses”, which they hope will reduce student numbers and see more people doing options such as apprenticeships.