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Christmas Identity Crisis

By Reanna - One Inky Queer / 2022-12-21
Posted in

Here’s a poem I wrote last year, in another lockdown with derailed festive plans, to be read to all the same songs that are stuck


Applying for Disability Benefits is Traumatic and Exhausting- But I Think That’s the Point

By Martha Cunningham / 2022-11-25
Posted in

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.

If you’re disabled in the UK, there’s two things you can get benefits-wise. Universal Credit (UC) – with a premium if you’re unfit for work or work-related activity – and Personal Independence Payment (PIP). 

If you’re lucky enough to have begun your journey into the hoops the DWP requires you to jump before the changeover to UC, or you live in an area where it hasn’t happened, you may get Employment and Support Allowance (ESA), but they’re, at least theoretically, the same thing.

As someone who has been through the process required for both of these benefits recently, I can tell you that it’s absolutely shite.

ESA goes a bit like this – you hand in doctors’ notes to be signed off by your work coach for a month or so – because god forbid the DWP just actually take your doctors word for it. Then, you’re put on the “health journey”. 

Unlike the journey to the (relative) health I was hoping I could go on, it was very much a road of traumatic twists and turns.

A paper form arrives on your doorstep – a nightmare in a brown envelope I will forever refer to as The Form.

Thankfully, it was also available as one you could type in – useful when writing in all of those tiny boxes would leave you unable to use your right hand for about a week. 

The Form, for the uninitiated, asks you to explain exactly what it is that you can’t do. 

Plenty has been said about The Form, I’m not going to repeat everything that other people have put better than I could. What I will say is that I am forever thankful that I was having regular therapy sessions while I had to fill in The Form. 

I’m sure Florence*, my overworked charity-based therapist who was only able to provide me with eight sessions when I really need them indefinitely, had some choice words for the author of The Form.

It can’t have been fun for her that I spent at least two of those eight crying over the feelings of uselessness it left me with.

The questions range from “how far can you walk?” – something you’ll generally never get the same answer to twice – to “can you control your bladder and bowels” etc.

Give all of these details over to an assessor who will literally never meet you for them to see if they can tick enough boxes to give you money so you can afford to eat.

And then you wait. 

Universal credit is an absolute pittance, and you’re stuck on the lowest possible rate while you wait for the paperwork.

Next stop is the work capability assessment. During covid-19, they were doing these on the phone, but they decided that I would have to come in, despite me requesting the phone on two separate occasions.

You’ve just told them that leaving the house is hard, that walking very far is hard, that talking to strangers is really hard, so they of course say “come here and do all of these things so we can see if you’re lying or not.”

My work capability assessment didn’t exactly go to plan, in as far as I didn’t get instantly awarded the help I clearly needed, but also in that they failed in their attempt to call me a liar. And they did attempt to.

After saying my assessor would be running more than half an hour late, a time they advanced on from “no more than 15 minutes” and actively encouraging me to reschedule, a message appeared in my file. “Claimant arrived on time. Wouldn’t wait more than 30 minutes”.

Luckily for me at this point is that my work coach – who I still had to see every few weeks despite my doctor signing me off – was outraged at this. 

Honestly, she felt like the only person in the whole system who was on my side. I’m fully aware she is part of the system, and her job often involves the trauma of sanctioning and pushing unsuitable jobs on people, but I was a little bit glad to have her.

I did in fact get a telephone assessment after that. A lovely nurse practitioner who seemed to understand my conditions perfectly took less than half an hour – and not all of her questionnaire – to conclude I wasn’t fit for work or work-related activity.

Not that she told me that though. She just ended the call and I had another nervous wait for the decision – formulating my potential appeal strategy the whole time. 

The decision arrived by a message telling me to look at another message, which told me to look at an attached letter, which actually just felt like taking the piss at that point. But I was given the top rate. I didn’t need that appeal strategy.

Next up was PIP. In my final appointment with my work coach, she encouraged me to go for it, telling me if it was up to her I’d have the highest rate of everything instantly. If only it were so easy.

You start with a 20 minute phone call in which you provide a bunch of information that you only have to provide again later anyway, and then you get The Other Form.

My time with Florence was over by this point, so I had to venture into this one alone. A lot of crying, some swearing, and just about managing to fight the inadequacy caused by listing quite how useless you actually are. Just how many people have to know I wet myself before I can be given enough money to have a tiny amount of quality of life? Eventually, The Other Form was sent out into the ether as well.

I’m still waiting on the next stage of this. When I requested The Other Form, they told me they’d supply me with information regarding Motability.

This information never arrived, but I still spent weeks thinking about how amazing it would be to whizz around on my new wheels, and never have to worry that I’d be stuck in a city centre because my hips have given up on me.

Weeks of feeling both strung along and vaguely hopeful, weeks where I had no choice but to do things that have made my pain worse; that would have been easier with the help I told them I needed. The Waiting is the worst part.

At one point, I considered calling them to see how my application was progressing. But I’ve learned a lot about the benefits system, and I didn’t want the fact that I was “able” to call them to count against me. As if making one call to reduce the stress of uncertainty meant there wasn’t anything wrong with me.

I believe the next stage of PIP is another assessment. Why they can’t just take the result of the one they just did is beyond me.

We hear about our friends’ appeals and tribunals, and yes a lot of them do win, but can we face that ourselves? Is it worth the trauma for the pittance you might get if you manage to get someone sympathetic? The Form and The Other Form sent me into states of panic, asking me about the very anxiety they were worsening. 

You’re less likely to hear about it than about “benefit fraud”, but £15 billion of benefits were unclaimed in 2020. This is painted as people not applying, but in reality it’s down to how difficult it is to actually claim.

The system is so hard to navigate, even if you are a person who isn’t suffering the kind of health issues that stop you from being able to work. Applying for benefits is so traumatic that you should qualify for additional money just for having to go through it in the first place.

I have this theory about our disability benefits and it’s one I’m sure many people share. The system is not about making sure everyone is “deserving”. It’s not about reducing fraud. No, it’s about trying to scare us off.

They want us to become overwhelmed, to exhaust ourselves with worry. And, ultimately, to give up. 

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The Disabled Cost of Living: The DWP is Crushing my Dreams of Living With my Partner

By Shona Louise / 2022-08-17
Posted in

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. 

My partner and I have been together for three and a half years now, and we’ve been ready to move in together for a while. However, my disability means that I currently rely on Universal Credit to top up my self-employed income, but due to this being means tested, I would lose nearly all of my financial support when I do move in with my partner due to their income. 

The government expects my partner to be all of my financial support, a policy that not only strips disabled people of their independence and autonomy — but also leaves them vulnerable to domestic abuse and being financially controlled

Independence is everything to me, so to move in together I need to be earning enough money that I can support myself without the need for Universal Credit, a challenge difficult enough on its own. 

However, the cost of living crisis has just made that ten times harder. 

It feels like we have such a mountain to climb now as I see everyone’s bills increase and fuel and food prices skyrocket. The number I need to reach now to achieve my goal of moving out is so much higher than it was even a year ago. 

I hear the government constantly talk about the importance of disabled people being in work, of being functioning members of society, but I don’t feel I’ve been given any of the tools to achieve this. 

My partner’s income is enough to give them a comfortable life, but it won’t stretch to support both of us, and it certainly won’t stretch to the cost of the adaptations we’ll need to make to our future home.

So much of the financial support out there is means tested, and for those whose income sits only just outside the limit, a task as simple as moving out can seem impossible. 

The reality is that I’d be better off living on my own. I’d get council support to find an accessible house, I’d get help with rent costs and making any adaptations to my home. But, that’s not what I want. Like most other long-term couples, my dream is to be living with my partner, I deserve to be able to do this. 

I imagine if I could work a more traditional 9-5 full-time job, my partner and I would be living together by now.

The way the government sees it, my options are that I can live alone financially independent, or I can live with my partner, relying on their wage with no money of my own. 

I’m trying hard to carve out a third option where I can live with my partner and retain my independence. 

It’s hard not to blame yourself as a disabled person when your condition seems to be holding you back. However, it’s plain to see that our society is simply not set up in a way that allows disabled people like me to live the life I want. 

The odds were already stacked against us before the crisis, now it feels like our dream just keeps getting pushed further and further away.

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Crippen hears about more dirty tricks played by benefits assessors!

By Crippen / 2022-07-23
Posted in

Gasp, shock, horror! Conservative MP Dr Ben Spencer said he had been told that staff working for government contractors were setting traps at assessment centres


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

By Harley Primrose / 2022-05-03
Posted in

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 carers 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.

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

By Sophie Balfour / 2022-04-26
Posted in

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.

My name is Sophie. I am 26.  I have multiple health conditions, including Cystic Fibrosis and Cystic Fibrosis related diabetes. There are a range of consequences from these conditions including regular respiratory infections, digestive issues, kidney problems, fatigue and joint pain.

I deal with each issue differently, whether through naps or antibiotics. As a consequence, I struggle with my circulation and during periods of cold weather, I do struggle to get and stay warm, which heightens my joint pain. 

My diabetes is a lot better controlled since the introduction of the Libre devices, however I still struggle for warmth. I wear layers of clothing and have multiple blankets. This is not always sufficient, especially in colder periods of the year. 

I am currently working, but have previously been unable to work full-time for significant periods. In the last year, I have moved out and live with my partner. I currently work part-time and he works full-time. I am reliant on Personal Independence Payment to help cover the bills, whilst he covers the rent. Reliance on benefits is a situation that is quite common for most disabled people. 

Before the crisis, disabled people were facing higher living costs. A factor of this is energy usage and requiring more energy to keep warm and power vital equipment.  I feel fortunate that although I have nebulised medication that require electricity, I do not need oxygen or an electric wheelchair amongst others. 

Benefits have increased this month at a rate of 3.1% in line with inflation rate from September 2021. The current inflation rate as of February 2022 is 6.2%. Even though we receive more money, it does not cover as much as it used to, essentially acting as a pay cut. As a consequence of the rise in inflation, the cost of everything is increasing.

As if times were not tough enough, the Government has announced that being on a disability benefit alone will not be enough to qualify for the Warm Home Discount. This was the case it was at the energy companies’ discretion.

When I moved into the property where I live now, I applied and was successful. However, the energy company went into administration and the discount does not transfer. I was not entitled to it under my current supplier. If someone receives a means-tested benefit as well, then they may still be able to apply. This decision is based on the ‘median income’ of DLA and PIP recipients being £14,400, above the new ‘low-income criteria’ of £11,510. 

Considering cohabitating partners’ income for a means-tested benefit is something that has been dissected multiple times and rightly so. There is a presumption that if someone’s partner works full-time, then they will share their income or that their income is enough to share. Here is a reminder that 40% of people on UC are at work. This could force disabled people to be reliant on their partner. 

Another issue is housing. If the property in which you live, is in poor condition, this will add further costs. If a property has damp, then one of the recommended ways to get rid of it, is to put the heating on. For someone who has a respiratory condition, then living in a house with damp is far from ideal.

When I was in this situation in university, I spent more time in hospital, than I did in university. Further costs will be incurred as a result of trying to make a property more habitable.  

It is well-reported that there is a shortage of accessible homes, but even more so with this cost of living crisis, disabled people could feel under pressure to rent a sub-par house that will not suit their needs as that is all that can be afforded. 

As part of my role at Citizen’s Advice, I try and advise people. For anyone who has health conditions or have children under 5, I would recommend signing up to the Priority Service Register of your energy and water company. 

There has been an increase in the calls we receive from those who are struggling. Before April, we received those calls and now more so. Before April we had support from the Government and through Local Authorities. That support has now decreased. We have less resources to help.

There needs to be an overhaul. It is hard knowing what is heading towards us and not having much of an arsenal to try and counter it. 

We need a fully rounded support package for those in need but especially for those who are disabled to help manage the ‘cost of living crisis’ that is being thrusted upon us.  

It is going to be hard, but I think one thing disabled people are good at, is being resilient, because we have spent our lives having to be. 

What is clear is that those who need help the most have been made poorer and that was a choice made by those who it will never affect.

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Why Using Benefits to Gatekeep Accessibility is Harmful

By Rita Borg / 2022-02-08
Posted in

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.

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PIP Assessments Insist We Perform Disability, So I Wrote a Play About It

By Aime M Marie / 2022-01-12
Posted in

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? 

Disabled people in the UK largely live in enforced poverty. Be it because of unemployment – from bias at interview, zero protection from unfair dismissal, lack of adaptations from employers – to outright eugenicist government policy. 

On top of a reduced capacity to earn money through safe and legal employment, being disabled costs on average over £500 extra a month. This can be due to prescriptions, a costly restrictive diet, extra time on every parking meter, fuel costs for a medication fridge, and other ways of paying out of pocket for daily adaptations.

Government welfare that claims to cover this disability tax as a lifeline for personal independence pays as little as £362 – £660 at the most – and is available to claim whether or not an individual is employed. 

Let’s swing back to that welfare process.

Personal Independence Payment (PIP) demands that disabled people outline every life-limiting indignity as step one of applying. No longer is a diagnosis (hard enough as that is to secure!) sufficient proof of disability. No, we’ve got to answer exactly how our disabilities actually disable us.

Have you ever looked another adult in the eyes and explained in excruciating detail how many times you’ve shat yourself this week? And how far you can bend your arm back to wipe, on a good day

Because this application is followed by an interview with non-specialists incentivised through rejection quotas to downplay the truth. Interviews where outsourced DWP representatives ask questions such as “when did you catch Down Syndrome?” and “why have you failed to kill yourself?” The subtext being that if you’re really disabled then you ought to off yourself: if you’re alive, then you’re lying. 

This isn’t an appointment where you’ll at least be offered adapted cutlery or a bed aid in exchange for the humiliation and dehumanisation: this is a performance so that you’ll be allowed to eat next month. 

On top of all this abuse, PIP is an indicator for other accommodations. Access to a blue badge can rely in some counties on recently scoring well at your disability assessment, and ESA (an out of work benefit exclusively for the sick and disabled) can be impacted by a poor PIP score (since having a high PIP Award can increase the income-related ESA you are entitled to.)

I am disabled. 

I know from supporting others’ applications and horrific face-to-face assessments that I would score too few points to qualify for even one pound of a Personal Independent Payment. Yet, I require daily adaptations from my workplace to remain profitably functional (including an incredibly lenient sick-day policy) – on top of three pills a day, meals prepared for me, and plans to upgrade to a wheelchair. 

I am also a writer. Mostly, as a way to cope with living life in the slow lane.  And I know that most people don’t understand something until they see it. Until it happens in front of you – via the safety of art or with the trauma of reality – we’re all a little too preoccupied to care. 

Minorities and activists both lament the fatigue from holding a potential ally’s hand as they fumble through their assumptions and partially realise that, actually, prejudice and discrimination are systemic. 

Art can offload this one-to-one hand holding to something light, even enjoyable, and something that is easier to empathise with than painful truths. Potential allies can be proud of connecting the dots given to them in a movie – that maybe eugenics isn’t right – and pave the way to a genuine supporter of disabled rights. 

On a personal note, writing a stage play on PIP forms and assessments seriously hurt to do. I’m not sure I would do it again, as this activism was not cathartic. Editing it, too, was painful, whether I could flinch by with tight-chested flashbacks or required a break to cry. 

Scrounge is not a happy show. But maybe a necessary one: procuring allies to help us snatch back our rights. It is a painful read – about a disabled mother, her daughter, and a family friend-turned-assessor. 

Yes, art – especially live theatre – is largely consumed by the most privileged in our society: the people with the spare energy and money to see an evening’s performance with well-timed lighting and adventurous set design. But who better to solicit as allies? With all due respect, theatre audiences have time to kill.

The dialogue is heavily inspired by the thoughtless things I’ve had said to me or I’ve read from nondisabled people about others. And although I knew it would elevate the piece, I personally hated even including any pro-PIP characters: but it was a necessary narrative thread for the non-disabled audience’s consumption of the show.

The human cost of PIP is immeasurable: outcomes invariably feature some kind of self-harm (like self-neglect), all the way up to suicide. Plus, the catch-22 of being disabled and in poverty can lead to further disability; through malnourishment, poor living conditions, and inadequate healthcare. 

Art solicits allies – who ought to have been fighting for us from the beginning.  I can offer a little bit of hand-holding. And hey, at the theatre – they even pay me for it. 

The treatment of disabled people in this country infuriates me and terrifies me. And when I can, I write. 

Scrounge is available to order from Waterstones now.

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The post PIP Assessments Insist We Perform Disability, So I Wrote a Play About It appeared first on The Unwritten.


Why Being a Disabled Freelancer on Universal Credit is a Double-Edged Sword

By Shona Louise / 2021-10-08
Posted in

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 recent £20 a week cut to Universal Credit has really brought home to me how insecure and unstable I feel on the benefit. When I first became self-employed, it felt incredible being able to earn my own money, whilst having that extra bit of security that meant I could pay my bills.

However, as time has gone on, and with the recent cut, I’ve found myself feeling more and more anxious about finding work every month, and what I’m going to do if I’m not successful. 

I am so grateful that I am able to work whilst receiving Universal Credit, but being a freelancer means there is much more pressure to find work every month.

I don’t have a guaranteed income, and so Universal Credit helps patch over the gaps for me. This recent cut however has piled on an unimaginable amount of stress and anxiety. I have no job security, so to have the only financial security I have cut so dramatically has affected me greatly.

Alongside this, I am also keen to move in with my girlfriend, but Universal Credit is means-tested against your partner’s income, meaning I would lose all that financial security overnight.

There would be no gentle adjustment period, the rug would just be pulled out from underneath me. I have to guarantee that I can earn enough money myself before doing this, a worry that I was able to manage pretty well before the cut was announced.

Now, I am so acutely aware of the pressure to find work to make up that £80 cut, even if my body is not physically up to it.

I find myself pushing beyond my physical limits on a regular basis to make sure I have enough money coming in every month.

Benefits like Universal Credit are meant to help those who can’t work full time, but the nature of being on it and the stress that accompanies it means I find myself working every day most of the time. It is not what I imagined when I first realised that there was a job that was accessible to me.

I tell people all the time that self-employment is ideal for me, and I can choose my own hours, but in reality, the anxiety of being on Universal Credit is the controlling factor, not my own abilities.

If I could choose the number of hours to work that would suit my disability, I would not earn enough to make ends meet.

It’s safe to say that even amongst all of this, I am one of the lucky ones. For those who solely rely on Universal Credit, this recent cut will be devastating.

It feels inhumane to me that the government have allowed lower-income families, disabled people, and those living in poverty to get used to the extra £80 a month for over a year, to then just suddenly pull it away.

£80 might not sound like much to some but this winter it will mean making a choice between heating their home and feeding their family for so many.

For me, it represents increased stress and worries in my life, that after having heart surgery recently, I really don’t need. I thought the benefits system was meant to catch you when you fall, not fuel your fears and increase the pressure in your life.

Right now, it’s hard to imagine that I could earn enough to come off the benefit and move in with my partner, but unless the rules on your partner’s earnings change anytime soon, I will have to keep pushing myself beyond my limits to lead the life I want.

Shona makes amazing crochet creations, please be sure to check out her shop Crochet by Shona

She can also be hired as a photographer to do portraits, live events and theatre work, check out Shona Louise Photography

Image of Shona – Fordtography

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The post Why Being a Disabled Freelancer on Universal Credit is a Double-Edged Sword appeared first on The Unwritten.


Join the #AudioRiot Twitter Storm – from 5.30pm Thursday 30 September

By ellen / 2021-09-28
Posted in

On the event of the £20 a week cut to Universal Credit, protest online with DPAC’s #AudioRiot and make some noise in opposition. DPAC is