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“Fully accessible” is a myth, we need to be more specific to help everybody

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. 


As I’m writing this, I’ve just got back from a weekend in Sheffield. It was my 30th birthday and my mum Shaz treated me. But it did illustrate the difficulties of travelling for two people who have sometimes conflicting access needs, and how “fully accessible” can be a myth.

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I’m Autistic but I Don’t Need to be “Cured”

When my parents told me I had autism spectrum disorder, it was just a formality. All of my brothers had already been diagnosed, and given that I spent more time at school in my own head than I did interacting with the people around me, it was pretty damn obvious.

I remember shrugging, even laughing, at the news, then tucking back into whichever Jacqueline Wilson book I was hyperfixated on at the time.

Words like ‘autism’ and ‘Asperger’s’ were thrown around as frequently in my house as phrases like ‘good morning’ or ‘Where is the remote control?’.

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Editors Notes: It’s Hard to get out of “Work Mode” When it’s Your Life – but I’m Trying

I’m very lucky that I get to make a living out of something I’m passionate about. However, the fact that my job is so connected to such an important part of my life, is often a detriment to me.

I always wanted to be able to give my community a voice and be able to shout about the issues disabled people face on big platforms, but in doing so, I use a lot of emotional and mental energy. It’s almost impossible to stop focusing on the things that I do for work.

We’re always told to have a healthy work-life balance but this isn’t always the case when your work is about your community and directly about the issues you face. 

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The Importance of Disability Representation at London Fashion Week

My life as told through outfits: the glossy magazines and rows and rows of polished, sleek, minimalist shops in Spain, the shops I couldn’t get into because there were stairs, the cold, damp car boot sales with my grandparents when I visited England, maximalist and chaotic – learning a skill my grandmother had perfected – how to find a bargain – a piece that felt like it was a scrap of your identity.    

The pieces that made me feel a part of it all; were the distressed denim jacket purchased at a flea market. My prom dress: purchased at the height of fast fashion – all bondage and garish colours – a bit tight – not tight enough.    

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A&E During a Pandemic: the Ultimate Equaliser of Rage and Despair

Everyone is here. There is an elderly gentleman, sitting resolutely without electric distractions and silently wishing he had a tablet to while away his sentence. Next to him sits a young Muslim couple, sharing TikToks and memes as they alternate glances at the clock. Opposite sits a mum and her young daughter, who she is desperately trying to keep entertained with a handbag full of tricks. 

A moody teenager sits hunched over his phone refusing to meet anyone’s eye while his chatty mother makes friends with the other despairing parents. Then there is a young man, reading a book with the ferocious concentration of a university professor.

And lastly, there’s me, hunched over an overheated laptop on 8% battery, trying to squeeze in some work in between waiting rooms with an eight-hour wait time looming overhead. 

Accident and emergency is the cornerstone of our public health system. The doors welcome everyone with patience and understanding, albeit tinged with frustration as understaffing and underfunding take their toll on each 24-hour cycle of care. 

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Channel 4 is an Essential Platform for Disabled People, we Can’t Allow it to be Privatised

Selling off Channel 4, a profit-making publicly-owned asset, makes no sense. This move puts jobs, small businesses and popular TV shows at risk. It also risks the exceptional work Channel 4 has done to create a path for disabled voices, stories and talent.

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Jamie Oliver’s Food “Campaigning” Will hit Working Class Kids Hardest – yet Again

Trigger warning: This article contains discussion of eating disorders.


Ahh, Jamie Oliver. The Naked Chef. The school meals guy. The anti-Jack Monroe. Turning up at Downing Street with what is actually a pretty rubbish pun of “Eton Mess” because of a Boris U-Turn on legislation that would force supermarkets to not do 2 for 1 deals on junk food items. During a cost of living crisis.

You may remember Oliver from such spectacular cultural moments as that time he showed kids what was in chicken nuggets and then looked despondent when they said they’d all still eat them, and for his crusade against turkey twizzlers. Jamie first had an impact on my life way back in the mid-00s with his school dinners campaign, when 12-year-old me rocked up to find there would only be chips on one day each week.

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

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

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

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

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Boycotting Twitter is a Privilege Many Disabled People Don’t Have

Privilege isn’t always in the eye of the beholder, but we already knew that. It’s a hard, immutable fact that many non-disabled do not see their privilege.

They don’t see how their privilege allows them to navigate the world with ease and without concern, how the world itself, in every atom, every conceivable way, is built for them – that other sphere, that different world, is built for them too. In both worlds, tangible and intangible they wield power – they make the rules.   

The rest of us – the disabled, the discarded – are told to follow them. Because why wouldn’t we? What do we have to lose? Have we no shame? Our lives, after all, hold little value – and, therefore, wouldn’t be harmed or reduced by abstaining for that, sometimes, ill-defined, greater good.   

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

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


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

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

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

But then I had to look at the news.

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

Goodbye safety net.

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

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

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

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

I probably have two different panic attacks before noon.

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

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

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

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

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

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

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

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

So, denial.

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

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

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

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

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

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

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

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

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

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

And the next day I do it all again.


Resources

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

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

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

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

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

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

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

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


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