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City Celebrates Disability Activists After Fighting Lawsuit and Losing

By Mia Ocean / 2023-01-26
Posted in

Springfield, U.S. — After a multi-year court battle, the city of Springfield is thrilled to celebrate its victorious opponents, the disabled activists who successfully compelled it to implement decades-old accessibility legislation.

City council member Leo Dedick said, “We could not be prouder of our disability activists. We applaud their important, necessary and long-overdue efforts.”

The city’s ADA coordinator, Jimmy Azhat, shared his takeaways from the costly and prolonged battle against the disabled: “Turns out there are ratios for physical accessibility, requirements for technology, processes for accommodations — I mean the list goes on and on. Consider my mind officially blown.”

Dedick said the city would host an event to commemorate the partnership with the disabled community and the city’s compulsory commitment to accessibility. He said, “We will use the settlement budget, first and foremost, to celebrate these hometown heroes. We will have a bounce house, food trucks, live music on the lawn, everything you need to celebrate these giants of the disabled community.”

The activists, however, were concerned nothing would change if they stopped doing all the work for free. Azhat was unfazed by their concerns and said, “We will create an oversight board composed of volunteer disabled activists to keep this gravy train going. Oh, and this gravy train has an accessible platform.”

Despite what can only be described as egregious and embarrassing ADA violations, Dedick viewed the public fight and ultimate loss in a positive light. He concluded, “It’s never too late to be forced to do the right thing.”

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Pain Chronicles: The Real Reason why Disabled People Exercise Less

By Caroline McDonagh-Darwin / 2023-01-20
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Pain Chronicles is a monthly(-ish) column from Caroline McDonagh-Darwin about coming to terms with living with a chronic illness. It will include funny stories and brutal honesty, with some thrown-in chats with her mum Shaz, and other friends too, along the way. 

One of the main guarantees of disabled life on the internet is being asked “Have you tried yoga?” I don’t know anyone who hasn’t been asked that question. 

In fact, if I had a pound for every time I’d been asked that I’d have too much money for the DWP to give me the disability benefits they don’t give me anyway. 

I was actually asked the yoga question in public last week. My face has never been good at hiding my true feelings (cheers neurodivergence), but I think it must have borderline provided subtitles to the swearing that was going on inside my head. 

The Office for National Statistics (ONS) released census data yesterday from 2021 for England and Wales, on the number of people who identify as disabled. Although the data comes with its own issues that I won’t get into at the moment, the total came in at 9.8 million, or approximately 18% of the population.

Activity Alliance has also released their own data from a survey on inactivity. 42% of disabled people do less than 30 minutes of exercise per week, compared to 23% of our non-disabled counterparts. 

It’s probably not a big surprise that a lot of disabled people have activity limitations – it’s pretty hard to exercise when everything hurts or your fatigued limbs feel like they’re wading through treacle. 

But what the statistics don’t show is the reasons for this activity limitation. As I said, pain and fatigue get in the way but that’s not necessarily the whole story here. It certainly isn’t the whole story of why I don’t do yoga. 

Among other things, my joints are extra bendy, which contributes to why they hurt. This can be something that comes at loggerheads with good old yoga, as well as with a lot of different physical activities. Overstretching can cause joint damage – and it’s why a friend of mine with the same conditions as me has a list from her doctor of the exercises she absolutely should not do; including yoga. 

“No pain, no gain” might be something that is often said to the non-disabled population (although I also don’t agree with it then) but it has the potential to be disastrous for disabled people.

Okay, so maybe I need a specialist class, such as chair yoga, or adaptations to a workout routine; that should work, right? In theory. But the latest news from the Tory party seems to be that they’re looking at reducing their funding for leisure centres

Swimming is one of the few exercises I sometimes find myself able to do, but with the sky-high energy costs for a centre with a funding cut, and the general cost of living crisis making justifying the gym membership incredibly hard, this avenue may in fact be closed off. 

And if you’re lucky enough that your local centre survives this, you still have to get through the door. My nearest leisure centre has terrible accessibility – the cardio gym is upstairs with no lift access, there’s just the one disabled changing room for the whole place, and the chair to help you get in the pool if you can’t do the ladders was once broken for 6 months. 

The accessible gym that’s just outside the town centre is a good 10-minute walk from the bus, and costs you twice the price, so that’s out too. Local classes are held in community centres and churches with enough access that they can meet their “reasonable adjustments”, but generally you have to deal with car park mazes and ramps with the tightest turns known to man. 

Even if you manage to get the perfect class or gym that you can do on a day when you can get yourself out of your house, there may still be another barrier in your way – the DWP. 

If you’ve been awarded benefits based on the fact that you can’t do certain things, they may find that your ability to exercise shows that you have been dishonest (when you haven’t). 

Never mind the payback such exercise will probably leave you with. Certainly never mind the potential long-term benefits such exercise may have, or if it’s recommended by your doctors. Nah, if you can carry a yoga mat into a class, you can clearly look after yourself and work 40-hour weeks. 

In case that sounds like hyperbole, Vice reported on one benefit claimant who had been personally surveilled and then had this taken widely out of context – assuming her showing up for an event meant she fully participated. 

Photographic evidence can be presented from plain clothes agents who may snap you making your way into your local leisure centre before patting themselves on the back for a job well done – even if you were only going in to inquire if they know anywhere local offering chair yoga. 

But what about the rather flexible and slightly relaxed elephant in the room? Yoga will not cure my disability. Physical activity can be good for certain issues had by certain people when done in certain ways, where possible.

If you can move in a way that isn’t harmful to you, that is accessible to you, and that helps you short or long-term, then fair play to you. 

If you have a long-term health condition, I strongly advise that you talk to your doctor before you do any regular exercise (or one-off exercise, actually), and be aware of how your new regime may affect your health.

I would love to be able to swim three times a week, doing up to 10 miles in that time, just like I did when I was slightly more healthy. But I just can’t do that anymore. 

The different factors that can be in the way of exercise helping – the factors that will make the difference between feeling better and feeling worse – are not something that can be represented in the ONS statistics, because they’re so individual to each person. 

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The post Pain Chronicles: The Real Reason why Disabled People Exercise Less appeared first on The Unwritten.


Snowplow Drivers Find Holiday Joy in Making All Curb Cuts Inaccessible

By Jerome Palliser / 2023-01-17
Posted in

“This is my favorite time of the year,” says Luis Rodriguez, 52, as he climbs into his snowplow. “Most of the year the city has me moving asphalt or gravel. But if I’m honest, this is why I took the job.”

Rodriguez and his crew are thrilled to take to the streets after each snowfall to trap every disabled person in his city.

Curb cuts are a hallmark of universal design that allow people with disabilities, as well as people pushing strollers or pulling wagons, to navigate neighborhoods. And Rodriguez vows to coat every single intersection with a thick layer of ice.

“There’s something about taking fresh snow and turning it into a pool of brown sludge at the bottom of every curb cut that fills my heart with holiday joy,” he says while affixing a large aesthetic bow to his front plow. Rodriguez has spent the last several months workshopping ideas on how to make this season the most inaccessible of all.

“They say that about twenty percent of Americans live with a disability. Those are big goals. But one day I’ll get ’em. I’ve actually been busting up curb cuts with hammers in my spare time. When you wear a reflective vest, most people leave you alone.”

Sadly, not all residents are filled with the same spirit of joy and whimsy.

“Are you kidding me? Are you absolutely kidding me right now?” one local wheelchair user remarks, channeling her inner grinch. “How the hell am I supposed to get through this? I’m already late for work. I hate this city.”

The post Snowplow Drivers Find Holiday Joy in Making All Curb Cuts Inaccessible appeared first on The Squeaky Wheel.


Shoved From the Ivory Tower

By Alice Wong / 2023-01-07
Posted in

Shoved From the Ivory Tower: Disabled Graduate Students Crushed Between the University of California & Their Union


Heather Ringo and Julia Métraux


On November 29th, 2022, over 200 disabled union workers and allies gathered on Zoom to beg members of the UAW 2865 Bargaining Team (BT) not to drop the core demands of our Access Needs Article (Article 23) in their labor strike and negotiations with the University of California (UC). We shared


Why do Disabled People Have to be Tiny Tims at Christmas?

By Melissa Parker / 2022-12-23
Posted in

Charles Dickens introduced the young Tim Cratchit to the world generations ago. Ever since, the character has been an emblem of A Christmas Carol.

Whether humans, cartoons, Muppets or a single puppet in a cast of non-disabled actors, they all have one tie that binds them — they are the sickly but sanguine child whose plight helps convert miserly, seemingly non-disabled Ebenezer Scrooge.    

There is a dimension of perceived honesty and truth to that description that disabled people are still wrangling with so many years later — the plight that helped to improve Scrooge.    

Dickens was the author of a disabled character whose sole purpose was to be an object of pity and to beg for goodwill. 

A character that, in his time, would have been an honest representation of the place, so many disabled people held. But we can’t claim there has been a radical revision in attitudes or ideals across the eras — they simply lie underneath an increasingly worn veneer of respectability.     

Tiny Tim doesn’t develop from a sickly young boy to a frail young man to a middle-aged destitute beggar. Rather, little Tim exists at one point in his life.  

He is the idealised Dickensian child — a staple of the Victorian era. But his modern twin hasn’t altered in the collective public consciousness. So, in whichever period, in whichever form, we see Tiny Tim. We know that we, as disabled people, are tied to him, our throwback twin — but we grew up.  

His presence is still felt in every report, every charitable piece edited just so – sickly but sanguine – to warm the hearts of the non-disabled. 

His father, Bob Cratchit, recounts Tim’s words. “He told me, coming home, that he hoped the people saw him in the church, because he was a cr*pple, and it might be pleasant to them to remember upon Christmas Day, who made l*me beggars walk, and blind men see.” 

No significant change or development has occurred since these words were committed to the page. Disabled children are still being used as props and mined mercilessly for their weight in inspiration porn.  

As a commonplace Victorian character, Bob continuously moralises his son’s death and disability. 

Yet, the sentiment expressed in this passage feels thoroughly modern — this is still how disabled children are represented — until age transforms them into parasites. 

“I know my dears, that when we recollect how patient and how mild he was; although he was a little, little child, we shall not quarrel easily among ourselves and forget poor Tiny Tim in doing it.”  

 In the modern world, Tiny Tim would be excellent fodder for a festive charity advert as a voice-over narrated his tale. His trauma would be reworked neatly with melancholic though stirring music. 

Or he might materialise on breakfast television to be dubbed inspiring — and patted on the head dismissively. Of course, there would also be a place for him, wrapped in a Christmas jumper at the end of any bland national news bulletin.  

He doesn’t develop from a sickly young man to a middle-aged destitute beggar. But he walks with a crutch and looks frail in both productions and illustrations.

However, know from bitter experience that Tiny Tim would transform into an adult who might be labelled a scrounger — a liar, a fraudster for daring to be both disabled and an adult. 

Those images are seemingly independent yet entangled, most disabled people have experienced a shift when they are no longer perceived as worthy of protection.   

Before his intervention takes effect, Scrooge quips that government-funded institutions should be sufficient to help impoverished and disabled people.

The Ghost of Christmas Present shows him the reality: they are grave places and nowhere near enough — not funded well enough or given the proper support. 

The reality is that Tiny Tim would age out of societal sympathy. The divide between who we are and who they want us to be is never more evident than at Christmas. He would be a victim of the benefit scrounger rhetoric, which affects all disabled people’s lives.   

Suppose the adult Tiny Tim lived in modern times. In that circumstance, he might receive the Christmas bonus from the DWP but not in line with inflation.

Not without having to endure some non-disabled pre-conversion Ebenezer Scrooge-style rants, which speak longingly of ripping us back to some form of an idealised Victorian era. 

He might have to beg for help to fund equipment once he outgrew his crutch and be told he was lying about his disability across the media. 

In column inches, tweets and on the street – language is chosen more carefully and insidiously now than Charles Dickens’ work conveys. Still, it’s no less ableist and regressive.  

Positively Dickensian? Positively modern. It reflects the phrasing and sentiment seeping into some newspapers, mangled tweets, and the warped observations of media commentators. 

It might be pleasant for them to remember on Christmas Day that we are not here to be puppets or Muppets in Scrooge’s redemption arc — or their warped Dickensian fantasies.   

Disabled people deserve to exist outside of how non-disabled wish us to appear at Christmas and all year round – god bless us everyone!

The post Why do Disabled People Have to be Tiny Tims at Christmas? appeared first on The Unwritten.


Man Guesses He’ll Go Ahead and Do that Thing Woman Just Said She Could Do Without his Help

By amandmrussel / 2022-12-20
Posted in

PORTLAND, Ore. — Local wheelchair user Kris Shaw has once again received unwanted help from a stranger after repeatedly telling the man she could pick her own phone up.

“It happens every time I drop my phone,” Shaw told us as the man bent down and flashed a dewy smile. “People assume I can’t bend down to grab things, even when I say, ‘I got it, no really, there’s no need, don’t worry about it, don’t, just leave me alone…’ and so on,” she continued. 

“I saw her drop her phone, and I couldn’t help myself,” said the anonymous man as Shaw tried to interject with another protest. “I had to swoop in from across the room and help. She said she could do it, but I thought I’d make her day easier because her life is already terrible.”

Common sense says if someone asks you not to help them, then don’t help them. But when it comes to interacting with disabled people, that common sense often flies out the window. 

“It’s like, why even ask?” said Shaw, rolling her eyes. “If you’re obviously going to do something anyway, what are we even doing here?” 

Shaw began to educate him on disability etiquette, but he seemed to think that was hard for her. So he told her, “Oh, you’re very welcome,” and walked away.

The post Man Guesses He’ll Go Ahead and Do that Thing Woman Just Said She Could Do Without his Help appeared first on The Squeaky Wheel.


Andrew Gannon: Impressions at the Fruitmarket Gallery

By Rachel Boyd / 2022-12-18
Posted in

Fruitmarket Warehouse was opened earlier this year as an experimental field, inviting artists to develop fresh work through the informed process of exhibition. Their latest


What the Fuck. I’m Disabled and They Still Made Me Wait on Line

By Steven Verdile / 2022-12-15
Posted in

Disabled people often face poverty, insufficient health care, discriminatory practices and numerous other challenges that make daily life more difficult. We as a society have tried to combat those drawbacks by deciding that disabled people shouldn’t have to wait on line. Or so I thought.

As I was buying my groceries yesterday (some Kraft macaroni and cheese and some other brands of macaroni and cheese), I approached a cash register with exactly four people ahead of me. I performed the traditional “pretend to wait in the back of the line” dance, but then things felt strange. As I, a very clearly disabled person, waited, the cashier simply continued assisting the customer at the front. I had never felt so invisible.

As he proceeded to ring up a loaf of bread, some carrots and a pack of Pepsi, I eagerly awaited his “oh yes you, my handicapped friend, come to the front” gesture, but it just … never happened. We even briefly made eye contact (non-sexual), but then he went right back to scanning boxes of graham crackers.

“The line-skipping practice began in the early 1900s as many disabled individuals had trouble proceeding through queues which included stairs, narrow passageways, long periods of standing and other physically demanding circumstances,” one noted line historian told us. “But in an air-conditioned convenience store with wide aisles, it’s a harder practice to defend.”

Still, the entire experience shocked me. As the unaware cashier failed to grant me my customary privilege, I waited for the generous customers ahead of me to offer me their spot. Instead, they simply stared at their phones and occasionally smiled. It was so gross.

Finally, after LIKE TWELVE MINUTES, it was my turn. I was prepared to face the hateful cashier, but to my surprise he was actually quite friendly. He complimented my shirt and didn’t even acknowledge the 300-pound wheelchair I was using. Without a single mention of hypothetical speeding tickets or “how fast can that thing go,” he promptly bagged my cheesy provisions and wished me a nice evening?

Ableds are so weird.

The post What the Fuck. I’m Disabled and They Still Made Me Wait on Line appeared first on The Squeaky Wheel.


Scars are Beautiful, not a “Mark of Shame”

By Hannah Shewan Stevens / 2022-12-09
Posted in

Last week, the popular BBC 2 quiz show, Only Connect, perpetuated a stigma we are all too familiar with: that scars are a shameful stain on our bodies. 

During the ‘Connecting Wall’ round of the game, the words “scars”, “stain”, “blot” and “stigma” were listed under the category name “marks of shame”. This language is an unacceptable display of the enduring stigma attached to scars and visible differences. 

In recent years, we have seen an increased awareness of the impact of body shaming, recognising that its long shadow inflicts widespread harm on people’s self-esteem and mental health. However, we are a long way from eradicating its influence completely, which this latest TV mishap demonstrates. 

I have lived with extensive scarring since the age of 14 because of a condition called localized scleroderma which causes widespread scarring on my torso and breasts. It destroyed my confidence as a teenager and I refused to look in the mirror without clothes on for years. 

The overwhelming shame meant that I covered myself up all year round, no matter how hot it got, and I wasted hundreds of pounds on scar-removing solutions to eradicate this “stain” on my body. 

Convinced that these scars were a “mark of shame”, I subjected myself to years of mental torture, believing that they somehow lowered my worth as a person. Other people’s reactions only reinforced this belief. 

The first time I plucked up the courage to wear a bikini–on holiday where I knew no one except my family–countless strangers stared, pointed, commented, and sniggered. I retreated to my towel, wrapped it around my scars, and swore that I would never wear a bikini again. 

As a young adult, midway through a sexual encounter, a man commented on their ugliness. It took nearly a decade to regrow that particular part of my self-esteem.

Even doctors helped perpetuate the belief that my scars are a source of shame. When I explained the impact the scars were having on my mental wellbeing, one doctor encouraged me to invest in scar-removal treatments to “get rid of the problem”. 

With my scars making their first appearance at aged 14–and changing every year thanks to the progressive nature of my condition–I lost nearly a decade of my life to this cycle of shame. The societal stigma cemented the conviction that scars were a “blot” on my existence. 

So, seeing shows like Only Connect feed this stigma with mindless word association is exhausting. I have invested years of my life into reframing my scars as something beautiful.

My constellation of marks is now well-loved and taken care of but there are countless people out there living with visible differences and still struggling to find self-love. 

To many, those few minutes of prime time for this snafu probably seem innocuous. What is the harm when it’s just words, right? The truth is, the harm is impossible to quantify in its entirety but I assure you, it’s significant. 

On a daily basis, all of us are bombarded with modelesque beauties on screen and on billboards with flawless skin and scar-free bodies, silently telling us that our skin, with all its pores and scars, is somehow wrong for existing.

Anything outside of these standards is viewed as less than. For people with visible differences, these standards hit even harder. 

Our beauty–yes, we are beautiful folks–is pushed into the shadows and stigmatized as something “other” and wrong.

We have made huge strides toward challenging beauty standards and making more people feel seen with diverse beauty campaigns and social media challenges but, clearly, the fight is far from over. 

When shows like Only Connect callously reinforce the stigma attached to being scarred, we take massive steps backwards. These subtle associations stick in people’s minds and have real world effects. 

We all need to work together to strip away the shame associated with scars and teach people that their scars are things of beauty, not an object of embarrassment. Platforms like the BBC–the host of this mistake–must play a key role in eradicating these harmful associations. 

The UK’s leading charity for people with visible differences, Changing Faces, has written to the BBC to ask for an apology and to invite their creative teams to meet to learn how to better represent those with visible differences. 

“We were disappointed and saddened to see, in 2022, the use of such harmful language being used on a show aired by the BBC,” said chief executive Heather Blake.

“Many people may acquire a scar in their lifetime – it could be following an accident or trauma, cancer surgery or even as a victim of a crime. There is absolutely nothing shameful about having a scar. What is a shame is that as a society we are still perpetuating the myth that there is something wrong or problematic with visible differences like scars.”

Campaigners also shared their shock and called for an apology. 

“I am a burns survivor, and my scars are nothing to be ashamed of,” said Changing Faces ambassador, Tulsi Vagjiani.

“Words matter and positive representation matters, otherwise this outdated trope that scars and marks make someone inherently ‘bad’, ‘evil’ or ‘shameful’ will continue. We need organisations like the BBC to step up, apologise, own this mistake and commit to ending the use of language like that which we saw in Only Connect.”

Supporters have also taken to social media to share their thoughts under the #NoShame and I hope we can all rally behind the campaign to push for a future where no scar is associated with shame. 

While not her responsibility, the host of Only Connect, Victoria Coren Mitchell, has demonstrated her empathy for the impact this segment has had on the visibly different community by apologising on Twitter. It’s a step in the right direction but more needs to be done to ensure that this does not happen again. 

Because, no matter how hard stigma tries to win the battle, people with visible differences and scars are a beautiful part of our world.

We are not something to be tucked away and ignored, we are a mighty and important part of our world’s wondrous diversity.  

The post Scars are Beautiful, not a “Mark of Shame” appeared first on The Unwritten.


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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