Disabilities

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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Take it or Leave it…

~ somethinginthewayshemoves

Recently I had what turned out to be naive idea. I was thinking about how I should be getting out more, break out of my routine, stop missing cool things I wanted to see. All good thoughts. Then I got cocky. I thought, hey, maybe I should meet some new people too. Bad thought.

I decided it might be fun to combine fun dating with interesting happenings. Of course I was entirely forgetting how low my tolerance levels are. So, what’s a girl to do? Write about it of course.

Date 1

We’ll call him Grey. Started off very well. We chatted a little online, he was engaging & intelligent. We shared plenty of interests. It didn’t hurt that Grey was handsome in exactly the way I like. When he suggested we check out Books at The Botanic I thought, this guy has potential. Then I spent an hour browsing books with a man who had clearly consumed some toxic pick up guy content. Every title I picked was beneath him. He commented on how surprised he was that I would enjoy ‘typically girlie stuff’ like Jane Austen. There were a couple of jokes about my never having been married. When he wondered if I could ‘strengthen’ my arthritic knees if I didn’t use my walking stick all the time I was done. No man is handsome enough to get away with such patronising bullshit.

Antique green leather bound Jane Austen Novels

Date 2

Cute & quirky, he seemed like fun. We had some enjoyable back & forth. Let’s call him Ha Ha. We met for sushi at a place he suggested. So, it was a surprise to me that he commented on the prices being too high. The chat was good, he was funny. It felt like we were both having fun. Lots of laughs led to cocktails and again, he wasn’t happy about the price tag. I was now officially uncomfortable. I get really embarrassed about this kind of thing. I don’t like to talk about money with people I don’t know well. Bitching about the price of a cocktail in a place you picked, gives me the ick. I drank my margarita & tried to think of a non awkward way to assure him I was happy to pay. I needn’t have bothered, on arrival of the bill he immediately started adding what he had consumed. I told him it was my treat and to ease any weirdness, that he could get the tip. I don’t mind picking up the tab. I could even have tried to get past the cringe. When I saw him placing a one pound coin tip on the table; I was out. That kind of cheapness is an absolute no.

Date 3 & 4

This one is a familiar story. I’m always very up front about my relationship wants. Marriage doesn’t feel like a thing I’m going to be a part of. I’m not even keen on the idea of living with someone. I enjoy my space, I like to make my own decisions. In short, I like my life. I’m in no rush to go turning it all upside down. I’m very much a ‘take it easy’ kind of girl. All of which was A OK with him. Until we hit that 2nd date. Say hello to Mr Fickle.

First date was cool. We went to a really nice tea place. The conversation flowed easily. He complimented more than my appearance. The man was interested and interesting. All good, I was down to see him again. The replay didn’t go so well. All of a sudden Mr Fickle wants to dig into how serious I am about not wanting to get married. He wants to assure me of what a great prospect he is. I keep diverting, but he brings us right back to topics that are not second date material. There wasn’t a third.

Date 5

This one was short and sweet. He’s a guy I briefly worked with a while ago. We’d stayed in touch via social media. He chatted me up a bit and I thought, why not? A query that was swiftly answered when he argued that those Jonah Hill texts were reasonable. I christened him Red Flag & made a sharp exit.

A row of red flags blowing in the wind.

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Cut + Run…

~ somethinginthewayshemoves

When one of the world’s most illusive artists decides to stage a retrospective in your city, you have to go. Banksy said they choose Glasgow because they were drawn to impromptu art often found in the city.

The Front of GoMA. Stone columns with triangular roof. With a Banksy banner hanging down one column.

A prime example being the cone permanently perched upon the Duke of Wellington right outside GoMA. For years Glasgow City Council tried to put a stop to the cone hat. In the end the removing & preventing was costing so much that they had to embrace the cone. The spirit of those folks who just kept climbing on up obviously appealed to Banksy as the cone appears in clever ways throughout the exhibit.

Duke of Wellington on a horse statue with a traffic cone on his head.

Background covered, let’s get down to the art. The show was even better than I hoped. Very clever staging and preventing the use of phones meant there were plenty of surprises. The art itself chimes with many of my takes on the world, so I obviously enjoyed the context. It was interesting to have look at the thoughts behind pieces I had seen before. Also very cool to see the evolution of the artist. As we all had to lock up our phones, the offer of free Polaroids was a nice touch. It’s a big tick from me.

Accessibility wise GoMA itself is good. The set up of the exhibition makes things a little trickier. The very beginning of the exhibit might feel a little tight for wheelchair users. There are also only two places you could sit throughout, which I found hard going. It’s worth calling in advance to ask for accommodations you need.

The graffiti wall as you leave the building is a fun thought. Very cool to let folk release their inner creativity.

Tickets & Info here.

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

How I’m feeling now…

~ somethinginthewayshemoves

I have been somewhat absent here. Anxiety has engulfed me. There is a very specific reason for the anxiety, unfortunately it is not a thing that I control or fix.

Theoretically being able to pinpoint the trigger means it I should have a definite end point. However, since resolution is not within power the uncertainty persists. I can’t even begin to address the issue until next week, which leaves me endlessly playing out scenarios in my head. It is sickeningly stressful. The fear that has been sitting on my chest for a week feels like it’s attempting to climb up & grab for my throat.

I’ve tried every calming weapon in my arsenal to little effect. When I managed to leave the house every sensation was painfully amplified. I was both submerged in sound & every noise was taking place inside my body. Likewise, every living being in my approximate vicinity seemed claustrophobically close. I felt dangerously on display & incapable of making a quick retreat. Sitting still was impossible, but moving left me gasping for breath. I couldn’t decipher if it was Pots or anxiety related. The more I worried about it, the less able I was to catch my breath.

Outside was brutal. Inside is merely a more measured torment. The slow drip of water torture rather than the ripping out of finger nails. I remain on high alert. For what I don’t know; there is no physical threat. My mind stubbornly refuses to divert course. If I pull it astray thoughts quickly revert to dissecting worse case situations. This is very much a wait and see kind of issue. Strategising & replaying every possible outcome cannot help me.

Still, I lie awake at night with my heart pounding. When I finally dip into sleep my subconscious conjures catastrophes that aren’t even feasible. I awake in a panic that fades to dread. An awful gnawing fear the dark summons in the certain absence of slumber. I never feel more inclined to screaming than when imprisoned in insomnia. 3am worries are no one’s friend.

Of course I reassure myself that I can survive subpar outcomes. I do know that this extreme horror level of anxiety will not last forever. I’ve coped with worse & there will be much better days. My mind simply doesn’t care. We’re hyped up to life or death threat defence and it has no intention backing down. If I had a bunker, I would be in it.

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My head is spinning…

~ somethinginthewayshemoves

It has been a week. Sometimes this chronic illness business is depressingly predictable. Others it throws you a delightfully new problem. The past week has combined both. Lucky me.

Let’s start with the spoonie admin. Apparently because I have Pots the airline requires proof from a Dr that I am fit to fly. I am fit to fly. I flew last year with no issues. I don’t require oxygen and I can follow the safety instructions should the worst happen. None of which makes any difference to the airline people. This letter has to be signed no more than 30 days before departure. Months ago I made an appointment and explained what it was for. So, imagine my surprise when I turned up at the prearranged time only to be told that their policies have changed; my GP surgery can no longer provide this service. They suggested I contact a private clinic. Since I would dearly like to go on my long awaited holiday, I did just that. After quite a few no can dos, I found a practice who could help. Huge sigh of relief. Right up until they emailed the cost. Oh, what I would give for a body that behaves.

The week then steered into familiar territory. A night of unmanageable pain culminating in a disastrous faint. My glasses were knocked off & one lens shattered in the fall. I of course landed face first in the mess, then proceeded to repeat the passing out & smash my head. Cue a day of blood tests, butterfly stitches and feeling appalling. Oh and obviously more cancelled plans.

I tire of discovering new hurdles and stumbling over the old ones. The week ahead will be mostly conducted from the safety of home. I intend to sit still, get some writing done and try very hard not to be so much trouble. Health is wealth in more ways than one. Bronan is relying on me to keep him in the luxury he is accustomed to.

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

Supercut of me…

~ somethinginthewayshemoves

Last year was tough. Long covid/Pots really did a number on my already subpar health. It was hard to keep on top of even basic daily tasks. All aspects of my life suffered. In an effort to shake that not quite enough feeling I’ve raided the brain for my 2022 highlights.

I contributed to the book Rebel Bodies by Sarah Graham. It’s an incredible piece of work about the gender gap in healthcare. Sarah covers the intersections of gender, weight, age & disability whilst deconstructing the barriers women & non binary people face when trying to access appropriate medical care. I am so proud to share my story of medical weight stigma and be part of this book.

In April we took my Mum on a birthday trip to Salzburg. She had a big birthday at the end of 2021 & we wanted to do something special. Mum loves The Sound of Music & has always talked about going to Salzburg. This year, she finally got there and it was magical. We stayed at Schloss Leopoldskron, where the movie was filmed, took a private Sound of Music tour and had a generally amazing time. Salzburg is incredibly beautiful and taking Mum on her dream holiday was wonderful.

At the very beginning of ‘22 I was a guest on the Anti Diet Club podcast. The pod creators Gillian Wilson and Tamsin Broster are dedicated to helping others divest from diet culture. I love the work they do and was honoured that they considered my voice worth hearing. It is such a pleasure to connect with others who are committed to fighting fat phobia.

This summer I got to revive a love from my youth. I thought festivals were a thing of the past for me, but thank to TRNSMT’s comprehensive accessibility accommodations I was back in the game. Watching bands, whilst sipping cider in the sun with my bestie & sister made me feel 22 again. Screaming along with The Strokes as the the sun went down was such a highlight.

This one might seem small, but felt significant to me. The Guardian journalist Martin Belam recommended me in his Friday Reads. Having a writer I respect enjoy my work enough to share it felt good. Especially in a year when my health has interfered with my creative output.

Last, but never least is of course being an Auntie. It is my biggest joy. I am so excited to watch all of my niblings grow. Last year they continued to surprise & impress. I am endlessly grateful to be part of their lives.

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My week in spooky season pictures…

~ somethinginthewayshemoves

It’s the October week holidays here. Of course that means some fun adventures & more spooky nails. It’s getting chilly out there, so I’ve been getting into the cosy looks.

I went a bit horror on the nails and tried out some chuckyish stitched wounds. I didn’t want them to be too gruesome, so nothing realistic here.

Pale white hands with stitched wound design manicure

On Wednesday we decided to introduce my nephew to a place my sis & I have loved since childhood. The Burrell Collection is an art gallery/museum in Glasgow that has recently reopened after a refurb and shake up of exhibits. The exhibits are presented in the most incredible building surrounded by woodlands, but in the middle of the city. It is one of my very favourite places and it was wonderful to see the boy enjoy it too.

Long white corridor leading to huge window looking out to forest

The revamp is great. They have maintained the heart of the collection whilst adding excellent interactive aspects. The boy loved playing the games & puzzles, all of which helped him better understand the exhibits. The cafe has a great vegan & child friendly menu. The Burrell also ticks the accessibility box. Lots of space to manoeuvre, lifts to all exhibits, loads of places to sit down when you need to rest.

White woman and child playing an interactive game
The Burrell Collection interior
The Burrell Collection interiors

After The Burrell we checked out the also revamped swing park. Thus I needed to be both cosy and waterproof. I opted for this lovely jumper dress & light weight rain jacket; both presents from my Mum.

Fat white women with hands on her hips wearing blue jumper dress& khaki rain mac
Dress – In The Style
Rain Max – Marks & Spencer
Tights – Pretty Polly
Glasses – Where Light

I chipped my Chucky nails, necessitating a premature change. I went for some creepy trees and sparkly bats. Let’s hope I can manage not to wreck this design right away.

My nephew has recently developed a love for golf; crazy golf in particular. Today we indulged that new found passion with a trip to Paradise Golf. He loved it, claiming two hole in ones & ultimately the game. Auntie ly struggled a little, but luckily I had my perfect little man to play for me when I needed a sit down.

Child playing crazy golf

We had a little sushi for lunch, picked up some shark wellies & grabbed a doughnut before heading home. It’s always too hot at Xscape and I kept that in mind when choosing my outfit. I wore a bunch of old favs today including my comfy shoes & a skirt with pockets!

Fat white woman with hands on her hips wearing swing skirt and t shirt
T-Shirt – Curated By Girls
Skirt – Lindy Bop
Tights – Snag
Pillow Slides – Primark

Pale September…

~ somethinginthewayshemoves

I just lit the first pumpkin shaped candle of the season. It is rainy, windy and cold. The timing is right.

Today did not bring my favourite autumnal weather. The gloom did, however suit my mood. I had the long awaited appointment with the consultant this week & she had no good news for me. PoTs ✔️ Treatment to improve symptoms ✖️. I can’t take beta blockers & I’m already doing everything that is supposed to help. She also thinks I need to see someone else about the extreme breathlessness. So, it’s status quo with the passing out every two seconds. Oh and back to square one on referrals & tests re breathlessness. I’m very tired and exceptionally fed up. This is what happens when I pin all my hopes on one Dr.

On the bright side I live in Glasgow and it’s nearly October. I am certain I will have many opportunities to wallow in gloomy weather. I also know a very annoying man. No doubt he will frustrate me so much that I will occasionally forgot almost no part of my body works.

Gold pumpkin candle holder on bookcase with picture frames

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Why am I like this?

~ somethinginthewayshemoves

If you are a regular reader you will know that I have been going through a process of diagnosis related to Long Covid complications. I had hoped that I would have definitive answers by now, but alas, my body is being a dick.

When last we spoke I was awaiting tests to confirm or rule out POTS. Well, after it seemed unsafe to continue with the first part of that test, the second was scrapped. Now I have more waiting to do. The consultant will decide our next move. I’m really disappointed as I had thought we were close to diagnosis. I know the idea of hoping for positive tests might sound strange to most, but the sooner my condition is labelled, the sooner it can be treated. Being chronically involves so much limbo. Waiting to see drs, waiting for tests, waiting for treatment, waiting to see if you respond. Having someone say this is definitely the problem and here is the plan, is a huge relief.

White women wearing large glasses and a mask is looking at camera
Worn out after test fails.

In the meantime my spoonie adventures continue. Lots of pain, fatigue and dizziness are the norm. Fainting at the drop of a hat and constantly fighting to catch my breath have further restricted my activities. I spend way too much time at hospital appointments, and too little doing what I love. I’m struggling, but trying to remain even a little upbeat. On we go.

Long hospital corridor

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