The Unwritten
It was earlier this year that my health took a turn for the worse and I found myself unable to work. My temporary job was coming to a close anyway, and a combination of my ongoing physical health problems and my newly worsened mental health meant that job searching wasn’t something I could do either.
I was left with one choice, the benefits system.
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.
The cost of living crisis has impacted most of our lives at this point, whether it be rising energy prices, fuel costs, rent or food, our monthly bills just keep rising and rising.
This has a very immediate effect in that for many of us our money isn’t stretching as far, and some are ending up in debt, but for me there is also a more long-term effect.
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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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.
What makes a person “count” as disabled? The Equality Act 2010’s definition is having a long-term mental or physical impairment that significantly affects your life. For most disabled people, the recognition of having a disability or chronic illness is important because it’s largely what allows us social recognition, medical support, and accommodations at work and at play.
For example, when I turn up at a train platform in my wheelchair, the conductor knows to grab the ramp, as a wheelchair is a very visible marker of disability. Other examples might be telling your boss about an invisible illness to get accommodations at work, providing medical evidence for mitigating circumstances for university, or wearing a sunflower lanyard so people give you a seat on the tube.
However, the main way many organisations identify someone as disabled is by whether they receive disability benefits such as PIP. For most disabled people the primary path to getting a Blue Badge for parking concessions is through government benefits such as PIP, DLA or Veteran’s Benefits, although a few other conditions provide a direct route, such as being registered blind. Non-disabled people often express shock that I, a wheelchair user, cannot currently use “wheelchair spaces”.
Another example is a Disabled Person’s Railcard. Apart from some specific conditions – like epilepsy, a visual impairment, or being D/deaf, the main way to get one is again via benefits such as PIP or DLA.
Even fun things like gigs often require you to “prove” your disability in order to be able to access a venue – I recently found a local venue that prominently advertised their “accessibility” on their website, but wouldn’t let me use the accessible entrance as I am still waiting to receive any disability benefits and no other form of “proof” was allowed.
This is despite the fact PIP’s criteria are completely irrelevant to whether you can safely attend a concert without accommodations.
Financial barriers are another problem, as many places that charge entrance fees charge carers at full price without proof of benefits, meaning that if you need a carer to come with you, you have to pay double what a non-disabled person would.
Thankfully, there are exceptions to this, such as the excellent entry policies of the National Trust and English Heritage.
Theoretically, a benefit that can be claimed by anybody disabled, regardless of income, and that professes to include invisible illnesses, doesn’t sound like such a bad idea. However, as most people are aware, there’s a huge gap between what the DWP say and reality.
For one, they claim it should currently take six months to complete a PIP application, but anecdotally many claimants have had to wait over 18 months due to the appeals process. This means, when someone becomes disabled or begins their claim, it may be well over a year before they start receiving PIP, and therefore can “prove” they are disabled – if they are lucky.
The DWP’s optimistic estimates assume that the correct decision will be made at the initial application. Unfortunately, this is often not true, and many disabled people are dragged through the lengthy process of a mandatory reconsideration by the DWP, then being refused again and, eventually, having to attend a tribunal and request that a judge orders the DWP to pay up.
Less than half of initial applications are awarded PIP, but almost three quarters of the people who make it to a tribunal will go on to win. Sadly, a significant proportion of claimants give up due to repeated rejections and difficult, lengthy, and technical forms.
The rules for PIP require that you do not expect your health to improve significantly within a year – many chronically ill people face a wait of months or years before they understand their new illness well enough to know if this is the case, and even then often initially have to prioritise medical issues, employment and housing.
These factors combine to mean that many people in the first few years of illness are not recognised as disabled at all.
Many people who are disabled do not meet PIP’s criteria, but still need accommodations. If an applicant can regularly walk over 200 metres their mobility is not considered to be impaired, but standing for an hour at a gig, walking 15 minutes between classrooms or doing their weekly shop may still be impossible for them.
Gatekeeping accessibility can be social as well as institutional. For example, there is a culture of encouraging people to take photos of cars parked in disabled spaces without badges to “expose the lazy”.
This process of obsessing over a small minority of ‘fakes’ becomes a justification for the public scrutiny and suspicion of all disabled people, especially those with invisible illnesses.
As disabled people often post on my local social media pages, they sometimes forget their blue badge, are waiting for it to be renewed, or are currently applying – but more importantly, what does receiving a notoriously difficult-to-get benefit have to do with whether you need parking concessions? Again, it just excludes those who are already in difficult circumstances, or who have fallen through the cracks, rather than those who do not need help.
When disability is judged on benefits, someone who falls into this category does not receive any help at all, excluding large numbers of disabled people.
Having to constantly prove that you need help is in itself a barrier to access for disabled people, requiring lots of planning, extra money, and a variety of documents and cards often just so that you can get into a place the same as any non-disabled person.
It is especially harmful to disabled people when it relies on PIP and other benefits with punitive application criteria.
Gatekeeping like this supposedly prevents fraud, but in reality, leads to huge numbers of disabled people being excluded while keeping services nominally accessible.
Trigger Warning: This article contains mentions of suicide, discussions of the benefits system and dehumanisation of disabled people.
Very few people have to beg for their lives.
And of those, how many have to beg every year to two years?
I’ve been on a mixture of Employment and Support Allowance (ESA) and Universal Credit since I was 17 years old, due to my disability limiting my ability to work. Both are a benefit that can support people who are unable to work, or unable to work full-time hours.
I was never able to get a Saturday job like my friends due to my disabilities, nor attend university. So at a young age I quickly found myself with very few options – and a family unable to support me financially.
At that age, I had no idea that accessible work options even existed, so I truly believed that I would never find a job that I could do.
Being able to sit here today and say I have found accessible employment, that I can do whilst receiving Universal Credit, a vital safety net, is amazing. But, it’s also a double-edged sword and not the life-changing moment I’d hoped it would be.
The coronavirus pandemic has shone a light on the many inequalities people face in the UK including living in poverty. As of February this year, a Social Market Foundation report found that 42% of families who rely on disability allowance are living in poverty due to a lack of government support and their catastrophic failure to protect the most vulnerable during the Covid-19 pandemic.
Poverty can be categorised into social, economic and political factors that mean people are left without their basic needs being met. So why exactly are disabled people disproportionately affected?
TW: Stats about domestic violence, abuse and austerity.
Today is International Womens Day, a day when we celebrate how far women have come and how much we have left to achieve.
Unfortunately one group often left out of that is disabled women. Although we’re one of the biggest minorities, disabled women are often left out of – or not even able to access – discussions about equality.
