Is it cos I’m cool…

If you believe the right wing press, being disabled or chronically ill is the latest trend. About a month ago Kathleen Stock (notable anti trans activist) wrote a piece for The Times titled ‘Why are so many young women using walking sticks?’. Her complaints about the use of mobility aids clearly chimed with Poppy Coburn, who, this month penned ‘How having a disability became cool’ in The Telegraph. Both pieces rely on the same prejudice and ignorance. Ultimately, they also support the same agenda.

Stock & Coburn both proclaim there to be more disabled people than ever before. They specify that these disabilities are mostly amorphous and hard to prove. Coburn in particular takes aim at PoTS. Both writers conveniently ignore that we have all lived through a global pandemic, which experts have long warned would be a mass disabling event. With this in mind, PoTS is particularly relevant. Covid has resulted in a huge increase in PoTS diagnoses. PoTS is one the acknowledged conditions that Covid19 can induce. I myself, was left with PoTS after contracting Covid. I was intially diagnosed with Long Covid, but Drs quickly noticed that my symptoms mirrored those of PoTS. Far from Coburn’s claim that Pots is hard to quantify and diagnose, there are actually very clear markers and tests. Tachycardia , Dizziness & Syncope, Breathlessness and Air Hunger. There are of course many more symptoms, but these are usually the red flags for PoTS. All of which can and are quantified and recorded with standard medical tests. Media like this supports the notion that chronic illnesses are so indistinct as to be easily faked. This is of course nonsense. Equating many people struggling to get a diagnosis with a condition being difficult to diagnose is absolute bullshit. This narrative increases stigma and ultimately makes accessing appropriate support harder. Which is of course, kind of the point.

The cool factor, they insist, is intrinsic to the rise in chronic illness. Coburn posits that chronic illness & disability are in fact a lifestyle. The appeal of which is fame, fortune and the easy life. Conditions like PoTS, EDS, MCAS & Fibromyalgia are, she says, used as an excuse to avoid adult responsibilities. Thus unencumbered the sick & disabled are free to pursue their chosen lifestyle. Longterm sickness is absolutely a choice to Coburn & her ilk. By her telling, there are no years of debilitating symptoms, no ever increasing medical visits, no fighting for diagnosis nor any battle for relief. Nope; one simply decides that they are chronically ill. Perhaps this is accompanied by sharing one’s experience on social media and voila, a new identity is born. Of course, everyone who has a chronic illness or disability is automatically granted vast amounts of disability benefits. Those Instagram posts always turn into large follower counts and lucrative brand deals. People share their experiences not for catharsis or in an attempt to help others. Their true motivation is profit and clout. Both of which are abundantly available. Disability is of course, very glamorous and society is famously eager to endlessly accommodate. Sickness becomes an entire identity. A victim mentality is encouraged, nay, embraced by the communities that have emerged. Thus, people seek to display their disability with customised mobility aids to up their cache. It is not unnoticed that Coburn and Stock critically align the disabled community with other marginalised groups. Just the latest ridiculous fad among the loony lefties. Life as ‘sickfluencer’ is all health updates on social media, sparkly mobility aids and raking in the PIP.

The reality of chronic illness is a far cry from Poppy’s ‘cool kids club’. Both writers focus on young women, the inference being that this a group that is not to be trusted. The misogyny echoes the bias women often face when seeking medical help. Women routinely receive subpar medical treatment. We are less likely to have our symptoms believed or investigated. Diagnosis takes far longer for women, than men. Conditions that mainly or solely affect AFAB people are not well researched. Even our access to pain relief is severely limited. Medical misogyny has been well established. The activism of women has been a pivotal factor in changing this. These articles ignore the battle that has been fought for the recognition of these conditions. There has been a rise in diagnosis of ‘invisible’ illness. This is not because people are faking, but due to wider recognition of those conditions. These conditions – and the suffering they cause – have always existed. The only difference is they are now officially accepted.

Diagnosis obtained, the next step is not, as suggested, to collect disability limits and live a life leisure. To begin with, the main disability payment PIP (Adp in Scotland) is not an out of work benefit. It designed to cover the extra costs that occur due to being chronically ill and or disabled. Many people in receipt of these benefits are working. Those who do not are unable to. Claiming disability benefit is not easy. Infact, the system is designed to discourage applicants. The intial paperwork is exhaustive. Each condition, treatment, medication and medical professional seen must be detailed. Furthermore, each symptom and how they impact daily life must thoroughly described. Medical evidence is required for every claim. This process is followed by DWP assesment. These are carried out by ‘medically trained’ assesors, but that medical training is rarely relevant to the claimants being assessed. Assessments consist of being questioned about every aspect of life, often being forced to disclose the most private and distressing details to a stranger. That assessor will then decide if/what you are awarded. Unfortunately these assessors rarely accurately represent what occurred in their reports. There have been countless examples of proven lies and cases of severely ill people being denied. From there one must undertaken a stressful appeal process that often seriously impacts the claimants health. The fact the majority of people who appeal will succeed underlines the fact this system is not fit for purpose. Having been through the process, I do not believe it is possible to be falsely awarded disability benefits. The DWP’s own research put fraudulent claims at less than 1%. The people who are awarded these benefits are significantly disabled by their conditions. The hate mongering that these pieces indulge in serves only to goad the public into accepting the withdrawal of support to some of the most vulnerable members of our society.

The truth of chronic illness is much bleaker than Coburn or Stock would have you believe. There’s no choice about the constant pain, fatigue, nausea or passing out. There symptoms cannot be switched off. There’s no magic wand to improve one’s mobility or rework our genetics. It’s a continuous battle to function in a world that refuses to accommodate us. We’re not chilling at home eating lollipops. We’re stuck there, physically unable to take part in our lives. Sharing these stories online isn’t a popularity contest and I can tell you from personal experience, the odd PR product does not a rich girl make. I was actually gifted some of those ‘designer’ compression socks that Coburn mocked (value Aprox £25). They’re just compression socks that aren’t ugly. I need compression socks and if I can offer a genuine review to others I will. Being disabled doesn’t stop people having style or a personality. A pink walking stick is no different to pink glasses. No one accuses people of wearing funky glasses because poor eye sight is the latest trend. Content on this topic is usually about awareness and connection. These articles are evidence of the stigma that abounds. Information is the best tonic for ignorance. We disabled/chronically ill have to advocate for ourselves. We are forced to gather information and insist on second opinions or we suffer in silence. Debunking misinformation is essential to prevent our rights being further eroded. There is also solace to be found in shared understanding. Being too sick to partake in a social life can be very isolating. Even being the person that cancels has an impact on relationships. Finding others who understand your experience is powerful. If a very few people can parle that into a career why should that be problem? Aren’t hard work, entrepreneurship and self sufficiency hallmarks of the right?

The offending socks.

It scares me it that these vile attacks now pass for mainstream journalism. These articles are clear propaganda. They are filled with untruths and snide judgements. The agenda of these pieces is blatant. Yes, they represent another skirmish in the culture wars, but they’re also a signal. A beaming light that directs hate. The disabled and chronically ill community are the latest target of the right’s misdirection. If the populace can be convinced that immigrants, trans and disabled people are the cause of all their woes, they won’t pay attention to the elite who are in charge. Like clockwork, a few days after The Telegraph piece we get details of Reform’s planned cuts to PIP. Politicians who choose to make deeper cuts to the welfare state, sell of you public services and rile up facist thugs are not your in your corner. Neither are the minions who spread their propaganda. Don’t be fooled by it.

Hurting Time…

I have been struggling with really high pain levels for quite some time. I’m trying changes to meds and pain relief strategies. My dr has ordered some tests, but so far I have not found relief. When pain overtakes me like this I seek one thing; comfort. Here are some places I have taken refuge recently.

Alan Bennett

I was delighted to discover that Alan Bennett had released a new volume of diaries and stories. I stumbled upon Bennett in my late teens/early twenties. I saw one of his books on sale and it piqued my interest. I fell in love on the first page and have devoured his work since. His writing feels like sinking into a warm bath. His memoirs paint the picture of a kind, funny and intelligent man. He always seem to be on the write side of important issues and handles life with grace. His plays are genius. So well observed and engaging. Basically I gain a feeling of well being from immersing myself in his words. If I’m too sore to sleep at least I can get into bed with these comforting pages.

An Oldie

This one is random. I saw an advert for a streaming service that included a really old sitcom that I used to love. The sitcom is As Time Goes By, it’s an early nighties show starring Judi Dench & Geoffrey Palmer. The premise is an older couple reuniting after being separated for 30yrs. They were in love in their youth and lost touch via a postal accident. Both thinking the other had rejected them. They are flung back into each other’s lives and fall back in love. It’s a gentle comedy. It’s also really lovely. Second chances, fate, the one who got away all feel romantic to me. Anyway, I of course downloaded the service and binge watched the delightful lot.

Music of The Night

Pain like this is usually accompanied by insomnia & that is currently the case. Sometimes even if I can’t sleep I will try to at least lie down and rest. For this I need a dark, cool room and some soothing music. Weirdly, one of the genres that relax me is musicals. The Lloyd Webber/West End type. I’m talking ‘Music of Night’, ‘Send in The Clowns’ kind of fare. Something about all those soaring emotional notes soothes me. Thus, I may recently have been spending the wee small hours singing show tunes in the dark.

Bru Boy

Finally, there is my boy. Bru is a very snuggly cat. Like most cats he seems to sense when I am having a really hard time. He will come lie with me in bed or climb right up on my chest to comfort me. He also does a very cute head butt thing. If I ask for kiss, he headbutts my mouth. He also grants me a little grace when I’m struggling and offers no complaint when breakfast is a late. I have been extraordinarily lucky with my beautiful cat companions. I am forever grateful.

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Why do you have to be a heartbreaker…

I have an app that is designed to monitor symptoms of chronic illness. I wear a monitor on my wrist to check my heart rate, oxygen level, quality of sleep etc. It’s helpful. It warns me when my vital stats are out of sink. It records my heart rate variation, which is a big indicator of how well my body is coping. It has also been good to have an accurate idea of how much sleep I am getting (not much). You can rate symptoms every day and compare over time how various issues are affecting you. Overall, would recommend the app.

There’s just one thing that gets me down. The final thing that is recorded daily is ‘crash’. Basically, did I run out steam that day. Sadly, the answer is yes. Sometimes my energy tank is empty before reaching the dat’s destination. Other times pain takes me out. Others, still,I get too dizzy to continue. Lucky me, some days it’s a combination of all three. Of course this means that I rarely accomplish what I wanted (or needed) to. It frustrating and depressing and often really destructive. Constantly saying ‘I can’t’ wreaks havoc with every aspect of life. Be it personal or professional, I’m letting people down and it kills me. The guilt is enormous. As is the disappointment. I’m ambitious; my head is crammed with ideas and I had a very different life planned. Not being able to execute my plans in a grand or minute way is heartbreaking. 

That’s the thing about chronic illness, it breaks your heart and you just have to carry on. I’m continually having to find a different way to operate. My lists of can’ts is forever growing and changing, thus I must be flexible. I’m working with a different set of tools and I try to remember that. However, always ticking that box is a daily downer, which happens to be another intrinsic part of being chronically ill. It’s not often that the big things floor me. The huge issues pull all your focus into jus getting through it. It’s an hour by hour what needs to happen to come out the other side of this. There’s no time for dissecting. It’s the drip drip of daily symptoms that really torture me. The dreaded realisation that this thing is here to stay, that’s what fucks me up.

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Ordinary pain…

Pain is a curious beast. Its purpose is to protect us. Our own built in warning system; something that compels us to take our hand out of the fire or call a doctor. The whole point of pain is to give us a message that we don’t ignore. That is until something goes wrong. Then ignoring pain becomes your life mission. 

Chronic pain is impossible to accurately describe. If you haven’t experienced it, you can never understand. All our lives we’re taught to report pain. The expectation being that you find the problem and there will be a solution. You graze your knee, your mum puts germolene on & kisses it better. You break a bone, you get a cast & it heals. Now with vigilance we can even hope to survive life threatening illness. We are a society awash with information; what foods we should eat, how often & how to move our bodies, how much sleep, water, sunlight are optimal. Our collective consciousness is set to believe that if we do the right things we can prevent illness and if something still goes wrong we can fix it. When that doesn’t happen, you’re stuck in a void. Physically, you are ill, but psychologically you must find a way to override it. 

 I am awoken most mornings by pain. I average about 4hrs sleep and rising from my bed is a fainting hazard. Every step I take hurts. My digestive system is best described as erratic and my autonomic processes are haywire. Thus I spend my days dizzy, sore, nauseated, exhausted and unable to regulate my temperature. That combination would bring most people to a standstill. You’d call the Dr, take the day off and you’d be right. But it’s everyday for me and Drs can’t help. I can’t ‘call in sick’ from life. I’m left with the challenge of learning how to turn off my body’s alarm system. 

Unfortunately, you can’t. It isn’t possible to stop the pain. Chronically ill people just have to do it anyway. The only alternative to missing my entire life is to do as much as I can despite the pain. It takes a lot of work to rewire one’s natural responses. Then even more work to decipher how far you can push. A huge amount of planning is involved. There are calculations required for every single thing I want to do. Firstly the practical: 

I always try to schedule my days. I estimate in advance how much impact each activity will have on my body. Then aportion rest days accordingly. Not just big days, but daily essentials like housework or showering. I attempt to judge how much I can handle and how long a recovery period I will require. 

The next step is planning. Before I go anywhere I check various things. Will there be places I can sit down, do they have disabled toilets, can I access water & food I can eat? Then I figure out my condition that particular day. Is my stomach behaving? Will it be safe to eat when I am out or am I likely to vomit. Am I especially dizzy? How safe is the location if I faint? Can I physically manage the walking distances involved?  And so on and so forth. 

The last stage of practicalities is symptom management. Medication selection, will I require more than meds for pain relief, do I need to take food or water. What clothes will keep me most comfortable? Items that won’t increase pain, will be cool enough if I overheat, but easy to carry layers to guard against the cold if necessary. Maybe I need cooling spray or my tens machine. How many of these things can I actually carry? All must be weighed up before I step foot out of the house.

Preparations complete, now comes the really tricky bit. It’s time to manage my mind. This part is entirely in my hands. There are no guaranteed techniques. One can see pain specialists, psychologists and research til the cows come home, but you can only know what works via trial and error. One of my conditions, Fibromyalgia, impacts the way the central nervous system processes pain. Sometimes my nerves send pain signals to my brain that are way out of proportion. I can have pain anywhere or everywhere for no discernible reason. The only way to function is to override that pain. I can’t stop feeling it, but I can attempt to alter how I react to it. 

My first line of defence is what I call ‘mind over matter’. I focus only on the very next thing to be done. Nothing else exists. For example, I must get to the seat up ahead. I don’t think about which parts of me hurt. No lingering on the sensations I am experiencing. I do not consider what comes after the seat. I keep my eyes on my target, keep moving and tell myself I can rest when the task is complete. This theory can be applied to anything. Brush my teeth, finish the paragraph, get to the end of the driveway. The reward of rest awaits me. 

In bouts of extreme pain I opt for deception. When I have tried every pain relief method at my disposal to no avail, I lie to myself. I close my eyes and repeat ‘I’m ok’. It doesn’t lessen the pain, but it can con my body out of panic. Panic makes pain worse. The body tenses & heart races. Calmly telling myself that I am ok repeatedly can override the fear coursing through my body. The pain may be unbearable, but I won’t stop the repetition. I will bear it. 

Distraction can be of use in various forms. Really loud music is a rudimentary diversion. As is cold water/ice or projected light. Basically I bombard my brain with stimuli in the hope of distracting from the pain. It’s a trick, sometimes it offers temporary relief. My other interruption tactic requires the help of others. I need someone to talk to me. A steady stream of words without my participation. Don’t ask me questions or wait for a response, simply give me a voice & a narrative to focus on. I’m not sure why but it has a calming effect. I don’t take in everything that is being said. I merely zone in on the voice and try not to think about anything else. It doesn’t stop the pain, but it somehow helps me manage it. 

My last ditch effort is comparison. I recall a time when my pain was worse. I remind myself that I got through that. The pain did eventually end. If it passed before, it will pass now. I endeavour to remember all the details. Where I was, what I wore, the smells, sounds, what my eyes rested on, the sensations of needles piercing my skin, the names of medical professionals, were they kind or rude, how long I waited, did I lie down and every other particular. Eventually, reaching the point when the agony began to subside. I strive with all my might to recollect that sensation; the incredible relief of pain beginning to melt. I hold tight to the belief that it will come again.

And there you have it, the tools in my box. Of course none of them actually leave me pain free and they’re all exhausting. It takes enormous energy to pre-empt every move and even more to employ these strategies whilst already in pain. At the worst moments they don’t have any impact at all. There are times when my body is excruciating. The pain so all encompassing that there is no escape. On those days I am beaten. I stay still and hope for it to be over. That’s the real truth of chronic pain; there’s no getting away from it.

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You keep making me ill…

It gives me zero pleasure to say, but my concerns about the current government have proved to be correct. In the last few weeks I have watched aghast as Labour MPs have announced plans to gut disability benefits. Watching Wes Streeting boast about enacting Tory policies was a sickening confirmation of how far his party has fallen.

It is exhausting to repeatedly repudiate the narrative politicians spin about disabled people. However, it seems it is again necessary. I’d like to give you a simple run down on why Labour’s proposed cuts are wrong. Hopefully I can also dispel the lies they are telling to defend them.

Let’s start with what Personal Independence Payment (PIP) actually is. It is a benefit payable to those with a severe disability. It is not an out of work benefit. Nor is it means tested. The purpose of PIP is to mitigate the extra costs that come with disability and/or longterm illness. The latest stats show that the average extra cost for a disabled person is £975 p/m. Compare that to the maximum PIP payment of £737 p/m and it becomes clear that no one is living the high life via disability benefits. There are many people in receipt of PIP who do work. Those who don’t are unable to.

Labour plans are to freeze the payment (stop increases to keep up with inflation) and tighten the qualifying criteria. Their contention being that too many people receive PIP due it being too easy to qualify. They also push the idea that there are many people receiving benefit who do not need it. Labour is continuing where the Tories left off with targeting one of our most vulnerable populations. Welfare recipients and disabled people in particular are an easy target.

The assertion that it’s too easy to qualify for PIP is ridiculous. Let me be clear, no one without an official diagnosis is receiving disability benefits. Successfully applying for PIP is an incredibly onerous endeavour. The process requires extensive disclosures, evidence and the support of medical professionals. The system already purposely discriminates against those with mental illness. Alarmingly, Labour MPs are making a lot of noise about the rise in those out of work due to mental illness; giving a big hint as to who they may go after. Expert medical opinion is already ignored when it comes to work capability assessments. Our previous government destroyed lives with denials and unnecessary reassessments. Many of which were over turned by appeal. The problem for disabled people is the toll this process takes. Applying or appealing a decision is exhaustive and intrusive. The process strips applicants of dignity, applies incredible stress and often makes people sicker. The DWP routinely reject applications from people they know qualify. What Labour mean when they say they want to make us harder to qualify is that they knowingly want to deny essential help to people who absolutely need it. The DWP’s own findings assess the fraud rate for PIP at 0%. There is no evidence to suggest that anyone is taking advantage of disability benefits. Removing PIP will not encourage people back into work. Those who are unable to work will not be cured. Those awaiting treatment will not magically jump to the head of NHS queues. Those who would like to work, but cannot find an employer to meet their accommodation needs will be in the same position. The sick and disabled are not the cause of the UK’s financial problems. Nor is it within their power to alter their situation in life. Our government know this and still choose to make cuts to a life saving benefit.

What Labour have become under Keir Starmer is shameful. The PR campaign for their benefit cuts will further stigmatise a group merely trying to survive. Starmer & friends are too cowardly to tackle the rich with tax increases, closing tax loopholes and similar policies. Thus they turn the might of the government and sections of the media against the group least able to fight back. They do this fully aware of the consequences. Disabled people will die.

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Somewhere beyond the sea…

During the school holidays we took a little trip. It was a belated birthday getaway for my sister, who turned 40 in December. We also both needed a bit of a break. What better way to relax than to take a 7yr and 6mth old to a blustery island?

Believe it not or it was bliss. I go away with my sister and the boys fairly often. In fact I start to yearn for round the clock auntie time if we leave it too long. Pleasingly big nephew also clammers for our next holiday. This was our first go with the new edition and it was wonderful.

Arran was, as expected, stunning. By pure chance I always seem to visit Scottish islands off season. Honestly, I think I like it that way. The rugged beauty in Scotland lends itself to the wilder aspects of our climate. If you’ve never stood in the middle of Scottish nowhere on a cold blustery day, you really should try it. There is something wonderful about wrapping up warm and venturing into the wilderness.

Anyway, back to this trip. We stayed at Auchrannie Resort which is genius combination of spa retreat and family focused. We were obviously taking advantage of the kid friendly aspects, but it would make a fabulous grown up escape too.

I had an absolute ball with my sister and nephews. We did a lot of swimming, explored the island and even a bit of archery. Turns out that for some reason I’m a pretty good archer. A fact that annoyed my competitive little sis. Come the apocalypse my chances of survival have increased, as long as I can get hold of a bow and arrow.

I of course indulged in one of my favourite hotel experiences, the buffet breakfast. I rarely eat breakfast. The luxury of having anything I could want prepared and ready tickles me. I don’t choose anything fancy, but I still love it. Toast, cornflakes & potato scones also happen to be the best fuel for a day in the great outdoors.

On our first day we set out in search of some standing stones. Unfortunately the big daddy stones were a trek too far for me. I did manage to reach a smaller stone circle, which was just as atmospheric. My sister and the boys headed on to the big stone circle whilst I enjoyed a little alone time. There is something magical about being amongst all that wild beauty and feeling completely alone. I live in big city and am never very far from other people. Don’t get me wrong, I love the hustle. There is however a part of me that longs for that fresh cold air in my lungs and no people.

We also managed to take in a few of the islands beaches. It rained on our last day, but that didn’t stop us. I prefer a gloomy beach, wind & rain feel like the real personality of the sea.

All in all it was the perfect trip. Now to buckle back down the drudge of daily life.

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I walk the line…

I’ve needed my walking stick for quite a long time. Maybe 7 or 8 years and I’ve only just become properly comfortable with it. Using a mobility aid, especially earlier in life, is very strange. Everyone has an opinion. No one is shy about sharing it.

All the questions and reactions definitely had an impact on me. I feel self conscious more often than one might expect. I hate when strangers want my medical history. Staring makes me feel shit or angry; sometimes both. I am so fed up with being told I’m so young for a walking stick. I find it really difficult to need accommodations. I feel like a real pain in the arse more often than anyone else is bothered. Likewise, I’m sure I sense judgement more than it actually exists. All of which messes with the confidence.

Then of course there is a sense of loss. Accepting all the things you can no longer do is hard. I struggled on without a stick for longer than I should have because I had this ridiculous idea that I was giving in. I’ve always felt a certain amount of pressure to be stoic in the face of my health issues. A walking stick felt like capitulation. It also forced me across the line in my head of admitting that I was permanently disabled. Before that I was hanging on to the idea that my knee could get better. That was silly considering I’d been assured by more than one Dr that it absolutely would not. Degenerative conditions aren’t known for improvement.

All told, it’s been trickier than I’ve let on. I’ve finally found peace. How do I know? I have personalised my stick. The idea of making it in any way decorative used to make me feel queasy. I have concluded that my subconscious attached styling the stick with it being part of my identity. The way I dress has always reflected my personality. Until very recently including my walking stick in that was a frightening prospect.

Klimt Style

I’m over the line again. If I’m taking the bloody thing every where it might as well be a bit funky. Keep your eyes peeled for new incarnations. Knowing me, I’ll be mixing up it.

Moo Style

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Lies and Distractions…

Just when I thought Keir Starmer was the most rage inducing Labour politician, Tony Blair popped his head out of whatever luxury hole he currently resides in. He decided that we all needed to hear his ableist and stigmatising opinions.

This statement is vile in a number of ways. Blair’s wilful ignorance will contribute to rising disability hate. There is no excuse for someone in his position to feed the right wing ‘scrounger’ narrative. I feel compelled to clear some things up.

Self Diagnosis

There is one reason and one reason only that there has been a rise in ‘self diagnosis’. That is inability to access mental health services. NHS waiting lists are long and actually getting a referral in the first place is laborious. Many people are instead directed to online resources and/or NHS helplines. Those who make it onto a waiting list may still have battles ahead. Most patients are offered a short course of CBT*, a modality that is not suitable for everyone and is often counterproductive. Those struggling to deal with mental illness are not researching symptoms and looking for a diagnosis for the hell of it. They do so because they are desperate. They are not adequately supported by professionals and are driven to find their own answers.

Disability Benefits Bill

Let me be clear, no one without an official diagnosis is receiving disability benefits. Successfully applying for these benefits (PIP, DLA, ESA or ADP**) is an incredibly onerous endeavour. The process requires extensive disclosures, evidence and the support of medical professionals. The system already purposely discriminates against those with mental illness. The criteria are designed to exclude symptoms and difficulties experienced by those with common mental illness like depression or anxiety. Many people with a professional diagnosis and treatment input from psychiatric services are denied these benefits. There is zero chance of someone just saying they have a condition and being approved.

Gaming the System

Implying that large numbers of people are illegitimately claiming benefits is dangerous and inaccurate. Fraud rates for disability benefits are very low. In fact, there is a higher percentage of claimants being underpaid. The application process is exhaustive. It is intentionally stressful and intimidating. Assessors frequently over ride expert medical opinion despite being unqualified to evaluate the conditions claimants have. Vast numbers of claims are rejected only to be overturned on appeal. Contrary to the current narrative, disabled people are often denied support they are entitled to.

***

Scapegoats

Disabled people make great scapegoats. We are one of the most vulnerable demographics. Often with little emotional or physical resources to fight the bureaucracy. We have been subject to harsh conditions since the beginning of austerity. Research from the University of York found that the impact of cuts to social & healthcare were linked to over 57,000 more deaths than expected between 2010 – 2014 alone. The perception that disability benefits are easily scammed and so costly as to damage the economy further endangers us. In 2023/2004 multiple regions in the UK recorded their highest number of disability hate crimes. Being scapegoated by those in positions of power is nothing new. The Tories have been using us as a distraction from their disastrous policies and corruption for years. To have Labour join in is a tough blow. I didn’t have high hopes for this government, but this page from the Conservative playbook is still alarming. Yes, I know that Blair is not a member of our government, but he does still hold sway within the party. His comments will absolutely be associated with Labour.

Disabled people are not to blame for the crisis in our health service. The UK has been experiencing a swell in both physical and mental illness for a number of years. This is as a result of deteriorating public services and a drop in quality of life. The pandemic played a part, but the biggest culprits are our political leaders. It disgusting that the trend of pointing the finger at a vulnerable group to distract from the reality of governmental failures is set to continue.

* Cognitive Behaviour Therapy

** Personal Independence Payment. Disability Living Allowance. Employment and Support Allowance. Adult Disability Payment.

*** Department of Works & Pensions

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Oh, sit down…

Yesterday was one of those ugh days. I had a couple of medical appointments and a few errands to run. I was tired and sore, but it was a sunny day, so off I set.

My mood took the first knock when my taxi driver has a rant about how short my journey was. Granted I wasn’t going far, but I can’t get about on foot. If I want to go somewhere, I need a taxi. Next up was a rude & unhelpful woman in the chemist. She made it very clear that finding my prescription was an inconvenience. Much huffing, puffing and snarky comments ensued, which drew stares from other customers. The final nail in the coffin of my day was the hospital receptionist who would not source a chair for me, but also got angry when I sat on the floor. Sitting on the floor is hazard, but passing out because I cannot stand apparently is not.

Rubbish day, but not the end of the world, right? If these were isolated incidents I would probably just brush them off. The problem is, it happens all the time. Being a disabled person out in the world can be a challenge. Accessibility is a problem, but even requests for basic accommodations can be met with irritation. On some level, I understand that. Work can be exhausting, maybe you’re having a bad day and being asked for something extra could just tip you over. However, most of my life is exhausting. I don’t make these requests to be awkward, I need them.

The result is I get apologetic. I begin my request with ‘I’m sorry, but’ or ‘I don’t want to be pest, but’. I feel like an inconvenience for asking. I anticipate that my accessibility request may not be well received. Listen, inside I often feel like getting arsey. My natural demeanour is not push over. I just know it won’t help. I also rarely have the energy for the fight. Thus, I find myself simultaneously pissed off at being made to feel bothersome & apologising for the perceived trouble.

I don’t need any help on the guilt front. I already feel like a burden to people that matter. Is it too much to ask that strangers don’t make me feel like shit? My needs are very straightforward; a seat mainly. I dread to think how anyone with a more complex requirement fares. All I’d ask is that before you roll your eyes or have a moan consider that this a moment of inconvenience for you is a lifetime of fuckery for us. Maybe you could just zip your lips and grab a chair after all?

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Life is a rollercoaster…

It’s been a mixed few weeks. The Easter holidays presented lots of opportunities for auntie time. Unfortunately, my body has seized every opportunity to mess with me.

My first Easter adventure was a trip to The Burrell Collection. I spent a lot of time here as a kid and always enjoyed it. It is so nice to share it with the next generation. The boy absolutely loved all the swords and armour. I loved watching him explore.

Dress – Forever 21 Tights – Snag Boots – Air Cloudies

The Burrell is really good on the accessibility front. Wide flat spaces that are easy to manoeuvre. Plenty of places to sit throughout, plus light weight stools you can carry around with you. Spacious lifts to all floors. It is a stunning buildings, with exhibits to entertain all ages.

As you know, I’m big into my glasses. I can never have enough. Thus, I was delighted to collab with Firmoo. These blue beauties have been on my face since the moment they arrived.

Glasses – Firmoo *

Next up was a little dip with my bestie & her brood. Swimming is my favourite, not least because I can properly carry on with kids. In the water I can move with ease. It feels so good not to be in pain every second. It’s even better to play a shark, spin the kids, help them ‘swim’. Much fun was had even if my littlest niece was frustrated that she needed to hold on to me. She was determined that she could do it herself and was not convinced when I explained that she couldn’t swim. Swimming with littles requires clothes that can be easily pulled on whilst squeezed into a tiny changing room with a wiggly child. These wide legs were perfect.

Trousers – Pockets and Sedition Cardigan – Monsoon

A few days later I was back with the treesome for the twin’s birthday. I can’t believe they are three already. It’s a cliche, but kids really do grow too fast! I still call these two babies, which is wishful thinking. They are so smart & funny & full of love. It is an honour to be part of their lives. We had a classic children’s party; balloons, cake & pass the parcel. It was a joy.

On the flip side my insomnia is in full force. Tossing & turning for hours every night is torture. I lie there exhausted, but feeling this horrendous unsettled sensation all over. The more I dwell on this physical embodiment of anxiety, the further away sleep gets. Every day feels like wading through mud. Surviving on minuscule amounts of sleep is the absolute worst.

When my body isn’t refusing to sleep, it’s passing out. Pots is kicking my arse. My latest fainting disaster resulted in two small fractures of my hand. The good news is that the bones are fast healing. The bad is that it is my walking stick hand and weight bearing is not easy. I’m feeling overwhelmed about how this is going to impact my mobility. Fingers crossed the predicted 3 weeks healing time is correct.

I might have to wear an ugly splint, but my nails look great.

Thankfully Bronan is always around for snuggles. A purring cat is a great stress reducer.

* Use my code Kerr50 for up to 80% off.

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