Disabilities

Ordinary pain…

~ somethinginthewayshemoves

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…

~ somethinginthewayshemoves

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.

If you like what I do you can support me on Patreon.

Somewhere beyond the sea…

~ somethinginthewayshemoves

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.

If you like what I do you can support me on Patreon.

I walk the line…

~ somethinginthewayshemoves

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…

~ somethinginthewayshemoves

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…

~ somethinginthewayshemoves

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?

If you like what I do you can support me here or on Patreon .

Life is a rollercoaster…

~ somethinginthewayshemoves

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.

If you like what I do you can support me here or on Patreon.

Design for life…

~ somethinginthewayshemoves

Yesterday I was doing a little insta scrolling when I came across a really strange post. It’s from Michelle Ogundehin an interior designer who is on that design competition show on BBC. I followed her for pictures of pretty rooms. Thus, I was shocked by this abrupt change in content.

I have a problem with these kind of alarmist statements. Exercise is good for us. Everyone knows that. Encouraging people to try new things, enjoy moving their body, take a nice walk is great. Scaring the bejesus out of folk with you’re going to die, is not. Life is complicated. Not everyone has time, money or the physical ability to partake in the 30mins/5 times a week suggested in this post. The comments were flooded with people pointing this out. Many said the tone was all wrong & the content ableist. Michelle’s replies ranged from patronising to snarky. Then she turned off commenting. As a disabled person who has very few exercise options I tire of this exclusionary narrative. I also believe it is counter productive; fear & shame are not effective long term motivators.

On a wider point I’m throughly sick of how many unqualified people stray into the ‘health & well being’ sphere. Even in my carefully curated timelines I find it hard to escape grifters spewing pseudo science. The scope appears to be continually growing, manifestion, fad diets, alpha males, mlms, alternative cures… the list goes on. All making unsubstantiated claims & usually making buck. Ten minutes on google is all it takes to see that almost all of these people are unqualified. Some may be well meaning, most are shameless charlatans.

Curious as to what inspired this shift in content I took a look at Ogundehin’s substack. Amongst the expected design tips there are a lot of posts about ‘health’. She covers topics I honestly don’t think she is qualified to offer advice on. She does mention that she’s not a medical professional. She also confidently declares things fact that I am not certain stand up to much investigation. Her sources are suspect, her tone is off. She uses phrases like ‘food be thy medicine’ and writes overblown articles on the dangers of gluten. To me, it seems like another person who has realised there is money to be made in the wellness world.

Before I wrote this I did a little research. I wanted to check I wasn’t mistaken about her qualifications. Michelle appears very qualified for roles related to design. She has held impressive positions in editing, journalism and design. However, I can’t find any evidence of training that would make her a go to on food or health. She does mention in her substuck that she has started studying nutrition, but by her own admission is on the first module of what sounds like an introductory course. Health is a serious topic. I’m all for sharing our experiences and what worked for us. However, I truly fear the idea of people making impactful changes in their lives based on the pronouncements of unqualified people.

Please be careful out there. Dig a little a deeper before taking things you find online as fact. That includes me! I research topics before writing about them, but that does not make me an expert. I want readers to check things out for themselves. I always provide resources and caveat my opinions. In the case of anything related to your health, my advice is always consult a Dr.

If you like what I do you can support me here or on Patreon.

Ins & Outs…

~ somethinginthewayshemoves

I haven’t made New Year’s resolutions since I was a child. At first glance I thought the In & Out trend was just a rebranding. However, on further investigation I have decided that I like this less momentous approach. Instead of massive declarations, we’re just reassessing what everyday things serve us well. Less changing who you are & more smoothing life’s aggravating edges. I’m willing to give it a go.

In

Swimming

More of it. I love swimming. I feel less pain in the water. I can whizz up and down in a manner I haven’t done on land in years. I enjoy it. I don’t know why I so frequently let life get in the way, no more. I’m carving out time every week to indulge in a dip.

Do it for fun.

I am pretty useless at crafty things. I do however enjoy the process. I like pottery and painting and making my own flowery bits. I’m often put off by the fact that the finished product is not grade A. Bugger that, why relinquish pleasure because I’m not good at it? No one is good at everything. Just for the fun it is good enough reason.

Currently reading

I like seeing what others are reading & enjoying. I’m often asked which books are on my shelves. Unfortunately I forget to share as I’m reading. Then when I remember, I have dozens of books I haven’t talked about. This year I will endeavour to share my books as I devour them.

Have a little faith

In my own talent. I know I can write. People pay for my words, lots of folk read this blog, my work has been praised and published for years. I know I can write. Yet, the imposter syndrome is real. Doubt is always creeping in, I drag my feet on some opportunities because I’m not convinced I’m good enough. It has to stop. I’m 43yrs old, I can do this.

Out

Matching Socks

I have various singleton socks. Perfectly nice, soft & cosy socks. Bugger it, I’m pairing up the odd ones and wearing them. No one with any sense cares a jot.

Guilt

I have a long established guilt issue. I can & will feel guilty about almost anything. Given that I have plenty of real things to feel horribly guilty about, I am going to try my hardest to let the insignificant things slide. There are only so many hours in the day, it does no one any good for me to spend most of them worrying about what is my fault.

Explaining

It’s exhausting and most the time it’s no one’s business. I’m no longer explaining why I need to know if there are seats or stairs. Folk can just answer the question. I ask politely, it’s straightforward information, just say yes or no. Randoms don’t need to know what pill I’m taking, why I’m vegan, why I fainted or any number of other things. Curiosity killed the cat and constant explaining knackered his Mother.

Making exceptions

This is the big one. There are one or two people in my life from whom I accept less. I love them, I know them inside out & I want them in my life. As a result I tolerate certain things from them that I wouldn’t from anyone else. Mostly this is absolutely fine. I’m not talking about horrid or cruel behaviour. Just the odd less than ideal lapse. Here’s the rub, sometimes those lapses hurt. I’ve decided it’s time I shift things away from swallowing that hurt. Everyone deserves to their have effort & care reciprocated. I must stop making exceptions. When annoying becomes hurtful, it is time to speak up.

If you like what I do you can support me here or on Patreon.

Don’t Ask, Don’t Assume…

~ somethinginthewayshemoves

The government has launched yet another useless campaign. This time they claim the aim is empowering & dispelling myths about disabled people.

In my opinion Ask Don’t Assume is a big fail. I don’t seem to be alone in that opinion. Many disabled people agree that encouraging the public at large to ask us whatever questions into pop their heads is a terrible idea. The government claim to have done extensive research. According to Minister for Disabled People, Health & Work, Tom Pursglove that ‘extensive research was with 500+ people with lived experience of disability. To be honest I’m surprised they found 500 people who thought this was a good campaign. However, with 6.3 million people currently entitled to disability benefits*, consulting 500 does not qualify as extensive.

One of the problems I encounter as a disabled/chronically ill person is maintaining boundaries. So many strangers don’t think twice of asking personal & invasive questions. Almost every time I leave the house someone will ask ‘what’s wrong with you’. In recent years Tory policies regarding disability benefits have led to more people holding hostile views. Disabled people are often viewed with suspicion, which leads to strangers demanding information from me. People who know nothing about me or my circumstances feel entitled to my private medical information just incase I am somehow ‘scrounging’ benefits. A government campaign with the tagline, Ask Don’t Assume, legitimatises this behaviour.

Further, a lot of the campaign materials include toxic positivity/inspiration porn content. I watched a video with a woman describing her disability as a strength and as something that ‘can give back’. Everyone is of course able to decide what disability means to them, but none of this resonates with me. My disabilities make my life much harder. There are lots of thing I simply can not do. Even the most mundane of daily tasks are negatively impacted by my conditions. That doesn’t feel like a strength to me. I also cannot comprehend how a disability ‘gives back’. Do my defective knees perform acts of service? Or is my daily fainting somehow contributing to a greater good? If so, I haven’t seen the evidence or benefit.

I do not believe that this narrative is advantageous to the disabled community. Our value is not tied up in how well we overcome our disabilities. Disabled & sick people require accommodations. There will always be things we cannot do without assistance or at all. Our bodies do not function like the average person. There is no amount of determination or strength that can change that. The onus should not be on us to make abled bodied people feel comfortable with that. Disabled people should not have to be grateful, inspirational or make themselves ill trying to prove their worth.

There have also been calls for our government to address their obvious failings with regards to disability rights. The Tories have spent over a decade attacking disabled people. Their continued battle to deprive people of vital benefits has done untold harm. Purposely making it incredibly difficult for those with mental illness to qualify for support is intolerable. Their persistent refusal to acknowledge UN reports on the circumstances of disabled people in the UK. Along with long-standing inequalities such as disabled people being unable to live with a partner or marry without losing disability benefits. There are many urgent issues this government could address if they truly wanted to empower disabled people. This is very poorly executed lip service.

If someone wants to share about themselves, they will do so. If a person requires your assistance, they will request it. There are very few instances in which is imperative to know the details of someone’s disability. The exceptions, health & safety in the workplace, safely accessing facilities and so on can all be handled discretely & professionally. There is never a reason to intrude on a disabled person’s privacy. This campaign does the opposite of its stated objectives. Considering it is a Conservative initiative, no one is surprised.

* UK Disability Statistics Feb 2023.

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