10 things not to do to disabled people

It’s disability pride month, I’ve written a list of things not to do to disabled people.

The disability pride flag a blue, yellow, white, red and green lightening bolt on a black background.

1. Dont guilt trip disabled people for not being ethical enough. We know Bez0s is awful, we know amaz0n treat their staff like crap, we know all the issues with fast fashion and ‘unnecessary’ plastic packaging on fruit and veg. Shops often aren’t accessible and many of us don’t have the energy to kook through charity shops and second hand shops. The pandemic made people even more reliant on places like amaz0n especially those who were shielding. Plastic straws have such a negligible impact on climate change and single use plastic and that ‘unnecessary’ plastic on fruit and veg may be the only way someone can eat it (trust me we don’t like paying more because we can’t cut up a mango)

2. Do not touch someone’s mobility aids, they’re an extension of our bodies, our freedom to access the world. Grabbing someone’s wheelchair could cause pain and injury or damage it (do you know how much those cost?), moving someone’s mobility aid to somewhere more convenient might take away their ability to move from where they’re sitting, if something is in your way ask (nicely) if we’re able to move it, we don’t bite (often).

3. Don’t touch or distract a service dog, they’re working and distraction puts the handler at risk.

4. This should be obvious – don’t report them for benefits fraud because they walked or you think they’re faking it when they’re having a good day, despite what the Daily Mail says benefit fraud is not the massive problem they try to say it is. Don’t make comments like ‘it’s a miracle’ if a wheelchair user stands or walks, not everyone is paralysed or unable to walk at all.

5. Following on from 4…..don’t complain about accommodations made for disabled people, motability cars aren’t free they’re rentals with the money being taken out of benefits, yes we can often get a carer in free to events but thats because we need help and assistance, you might have to wait for the next bus or move your buggy but wheelchair users have a legal right to that space (I’m an ambulatory disabled person and that’s the only space I can safely stand so if I can move so can non disabled people).

6. Don’t make assumptions about our abilities if we say we can do something or we don’t need help don’t argue or do what you think we need.

7. Don’t assume somewhere is accessible because it has a lift or ramp, accessibility isn’t that simple, ask what accommodations we need or if we want to look into it instead.

8. Don’t take photos or videos of us in public. I can’t believe I have to write this, our appearances, behaviour, the way we interact with the world or the way we physically move may not be the same as everyone else but news flash we’re people too, don’t do this (and if you do please go suck a bag of dicks).

9. Don’t blame us for the lack of access effecting you, we can’t help the amount of time it takes for trains or buses to put out ramps, we have places to go too.

10. Don’t take advantage of things that are in place to make like easier for disabled people, don’t park in blue badge parking spaces if you don’t have a blue badge even if you are only going to be a few minutes, don’t use the accessible toilet to go for a poo or to take selfie’s, priority seats are near the doors on a train or bus because we need them to be please don’t sit in them unless you need to.

These are just a few things and nowhere near an exhaustive list, everyone’s circumstances are different and not all disabilities are visible, my comments about not using an accessible toilet or priority seat are not aimed at people who aren’t visibly disabled.

Release

A countdown for the number of days I’ve been self harm free

I was trying to explain to someone recently the conflicting feelings that come into my head around self harm. I want to self harm but really I don’t, I keep thinking how much better it was to have an outlet for the way I feel but really I know that it wouldn’t help, it didn’t help, not really, not properly but that doesn’t stop my mind jumping to it when I’m stressed or anxious or overwhelmed.

I haven’t self harmed in 391 days but I self harmed from the age of 17 to 32 and intermittently before that, it’s not that I want to self harm it’s just that I want to breathe and not feel like I’m suffocating, I want to stop feeling like I’m dragging a weight around with me or wading through custards and when it’s been something I’ve done for so long it’s an immediate thought an ingrained reaction that my mind jumps to when I feel bad.

I’m not naive I know that just because or not self harmed in a long time it doesn’t mean I won’t ever do it again because I can’t say for sure that I know I’ll never self harm again and even now it’s not that I never do anything unhealthy/ potentially harmful or things that could be soon as negative ways of managing things they’re just less destructive and don’t involve me ending up in a&e. The longer time goes on the bigger the stakes, once I was past 6 months I’d beat my previous longest time, then it was 7 months, 9 months and finally a year.

Sometimes people say what can I do to help or make things easier but I don’t always want them to do anything other than listen or try and see things from my position, I know some people are more practical than others and their reaction is to look for a solution but sometimes the solution is just please listen to me and hear what I’m saying when I say how overwhelmed and stressed I feel, how I miss people I was close to, how alone I feel, how the light at the end of the tunnel feels very dim and distant right now that’s what can be done to help.

Sometimes I just want someone to take me down to the carpark and let me cry

2018 a (brief) review of the year

Some naughty elves decorated the office
A collage of pictures of Christmas decorations in the office

Before the earth makes that turn moving the UK into 2019 I thought I’d do a 2018 roundup post because it’s been a pretty intense year. At Christmas 2017 I said my goal for 2018 was to become permanent staff even if it was still on reduced hours but to have the security of a proper contract not a zero hours one.

The year didn’t get off the best start with my first trip to a&e of the year on the 2nd of January this was also the only visit to a&e all year, just over two weeks after this I started a new medication Lamotragine a mood stabiliser. I’m sure that lamotragine has been the biggest reason that I haven’t self harmed its almost like it’s turned something off in my brain that’s made me not want to self harm anymore.

My main goal for the year came true in May when I became permanent staff and took over running the youth service, in November I passed my 6 month probation so now I’m officially permanent staff running a service, managing volunteers a year after I said I wanted to be permanent.

A picture of a letter confirming that I passed my 6 month probation

I’ve been under the mental health service again this year slowly adjusting my medication and I’ve now come off the antipsychotics, reduced one of the medications I was taking for anxiety and only taking the beta blockers as needed. I’ve gone from taking 5 different medications for my mental health to 3.

For someone who often struggles with change there have been so many this year, changes with my job, and the people I work with, two of the people I was closest with at work both left within a few weeks of each other which has been hard and still hasn’t fully sunk in. The office is definitely quieter and I’m missing my verbal sparring partner, I’ll also the person who will always find something positive in everything who took me outside to the carpark to cry because she knew I wouldn’t want anyone in the office to overhear me.

I’ve also become closer to other people at work including two who started at the same time as me, I’ve been out for various drinks and social events (enough to maybe get a reputation) and I’ve had some lovely feedback and support from my volunteers.

As an incredibly indecisive person who struggles to make a choice when there are too many desserts on the menu I bought myself an early Christmas present and got my first tattoo covering some of my self harm scars something very permanent but positive and I love it so much.

A collage of pictures of my new tattoo a caduceus with the words omnes te moriturum amant above it

So 2019 will be off to a busy start with work but also starting with a huge milestone of a year since the last time I self harmed. Of course my love for a certain tv show about a certain grumpy dr has been in full force in 2018 (is a tattoo taking the fandom too far?) and I’ve spent my time off over Christmas working my way through Sherlock, 2019 is looking like a busy year for my fandoms.

Happy new year or happy January or happy Tuesday whichever suits you

Georgiesaurus ☺️🦖

Stranger than fiction

I didn't have a picture of a tightrope, the treetop walk at Kew is the closest thing.
A large metal walk way amongst the treetops at Kew Gardens

I’m not a fiction writer, not that I consider myself a writer as such I enjoy blogging and writing workshops and training but I can’t write stories. I admire people who can write fiction, recently I’ve been reading quite a lot of fan fiction, now I know the reputation a lot of fanfic has and the sort of images it brings up in a lot of people’s minds – badly written sec stories often with interesting pairings and while there is plenty of that it’s not what I read.

I read a description recently where a character was described as “walking a tightrope across a canyon of pain, trying to keep his balance, occasionally swaying slightly“ although this was a metaphor for physical pain I think it’s also very accurate for mental health and the balancing act of trying not to over balance from one problem or another and stay on course. I’m struggling with anxiety and low motivation and the 8 -10 week wait for another CMHT appointment has now been 15 weeks with no appointment in sight.

My tightrope is currently swinging between work and benefits with a chasm of fuck knows what beneath me too deep to see the bottom but with nothing good down there.

I’m behind with work and struggling to talk to anyone about it, I’m frustrated at myself and I’ve come to such a roadblock with this that it’s making me feel stupid which is why I’m struggling to ask for help or admit that I’m having a complete mental block, I’ve always struggled to ask for help with things I don’t understand for fear of looking stupid (or being told I’m stupid). Other issues at work currently stressing me out are things beyond my control such as not enough volunteers and having to rush training new ones and now someone close to me is leaving. Have a mentioned before that I struggle with change? Especially changes with relationships? The last couple of weeks have been an emotional shit storm from hiding in the toilets crying because I’m actually devastated that they’re leaving to losing my temper and shouting at them due to a build up of stress and frustration.

On the other side the benefits and money stress which is something that doesn’t just impact on me, my tax credits have been stopped in what I can only see as an hmrc cock up which has also had a knock on effect in stopping my housing benefit and having to repay the council what they’ve paid so far, I recently had to reapply for my PIP/ disability benefits and still haven’t heard back from that, the scary thing about this is if I lose it completely I won’t be eligible anymore for tax credits and my boyfriend will lose the carers allowance he gets for supporting me.

As I can’t currently see an end to the tightrope I just have to hope I can keep my balance and not fall over the edge like the character the quote was about.

Three hundred and sixty five days

Watching me decay

One year ago today I started working on the youth wellbeing service, initially to support the volunteers when they delivered workshops and helping with training while someone else did the main day to day running of the service. One the first day he threw me in at the deep end and got me to rewrite one of the workshops, despite not bringing my armbands I managed to avoid drowning and quickly decided I wanted more than just the odd hours supporting the volunteers partly because I liked the extra money but also because I was starting to want more than the things I was doing.

I guess I was lucky to have a manager that was happy to give me more responsibility and delegate more work to me plus he didn’t have the time to do the amount of work the youth service needed on top of running another service 3 days a week. I loved the things I did as a volunteer but I was starting to get bored and after years of stagnating I didn’t want to get stuck again so the more I was given the more I took.

This arrangement was meant to last a couple of months then until Christmas then April. On the 26th of April I had my interview for the service lead position and on April the 27th I was told I’d got the job.

Today I jumped ship and went to work in one of the other offices with a different team, since starting this job I’ve found it hard to be alone in the office all day so I tend to pop up in other places from time to time, I celebrated in a work appropriate was with a boiled sweet which my current manager laughed at me for when I sent her a text telling her (feeling the love) but I might go wild tonight and have something stronger, maybe a bag of haribo 😜

To alcohol the cause of and solution to all of life’s problems

A young drunk dino.

drunk (2)
A picture of me drunk with my mouth open wearing a black and white striped top

I’m a mouthy drunk, not the messy head down the toilet drunk of my early 20’s or the numbing my body with vodka so I could take action to numb my mind drunk of my late 20’s, I’ve never had a problem with alcohol as such more a problem with the things I do when I’ve had alcohol.

I don’t drink much now, chronic illness and medication have seen to that and I’m really only a social drinker but I’m also anxious socially and alcohol is a great way to reduce the anxiety and my tongue. When I say I’m a mouthy drunk I don’t mean rude or aggressive (passive aggressive maybe) more that my tendency to over share increases as my inhibitions decrease adding this to a habit of using humour as a way of making light of difficult subjects it can be awkward at best and messy at worst.

But this isn’t really about alcohol, to quote thirteen being drunk doesn’t change who you are it just reveals it” I recently did a support plan at work about supporting my mental health including triggers, what I can do to support myself, how work can support me and what signs there might be that I’m struggling. One of the things I included here was changes to my relationships with colleagues, I feel I have some good relationships with some of the people I work with and we tend to have a laugh and joke about things including each other it’s banter but if I’m struggling or not in a great place mentally I can take that too far past it being funny or harmless.

The problem with banter is when mixed with anxiety and alcohol and a loosened tongue the less fun parts come out, I’m not incapable of being unpleasant or bitchy I’m certainly no saint but it’s not always just to be a dick it can and recently was in reaction to hurt, those annoying attachment issues rearing up again at unplanned social interactions with someone who was once a source of support who then let me down and lied to me more than once. I’ve struggled with change and boundaries but I’m not oblivious to them and I’m not naive I don’t need people to lie to me and give me false hope only to completely go against what they said, the worst part is although I’m angry part of me still misses them but I don’t want to not that I particularly want to be angry either but it would be easier to just be angry.

It would be better if I didn’t have to see people who let me down or at least have some control over the interactions but that’s not always possible and while the banter may have gone a bit far and the anger crept in aided by alcohol it didn’t messy and there were no close encounters with the toilet or trips to a&e.

They see me rollin…

… they won’t get out my fucking way

It’s 6:30 on Friday afternoon, I’m stuck on a busy train that smells like a giant armpit and someone is crunching crisps in my ear and dropping crumbs on my shoulder, welcome to commuting. You may have seen some news articles this week about the issues faced by disabled people with priority seat badges not being able to sit down, this is not something new and although the TfL badges are an improvement people have very selective vision when using publigc transport. Of course it’s entirely possible that people with hidden disabilities who don’t want to wear a badge may be using these seats but when every seat at the front of the bus is full or every priority seat on the train is occupied it seems unlikely these all these people have a hidden impairment

It’s not just about priority seats either but the general lack of consideration towards disabled people using public transport and general attitude that we’re a nuisance or in the case of the never ending buggy vs wheelchair debate wanting special treatment and expecting to be treated better than everyone else, people don’t even notice you they don’t look up from their phones or newspapers or even look where they’re going when running for a train. Since I started my new job four weeks ago I’ve been commuting daily, mostly to the office I’m usually based at which is a three minute train ride and a 15 minute walk from home however recently I’ve been working at our other office a bit which is further away plus traveling to my boyfriends every week. Because I’m working at different offices and not always able to use my pc I have a work laptop, like me it’s big and heavy and quite old and because of my disabilities I can’t carry it around easily.

As a reasonable adjustment work bought me a rucksack on wheels so I can wheel around my laptop, notebooks, resources for workshops and any other stuff I need. In the 4 weeks I’ve been using it I’ve had help getting on and off the trains once, the station I get off at rear work doesn’t have a lift so I have to carry it up and down the stairs. People find cases and bags on trains annoying I know it’s bulky but I have no other option unless someone wants to replace my brain, spine and connective tissue so I can carry things while staying upright and not being in pain, today I dropped my stick trying to get up to get off the train it’s metal and wood so makes a loud thud when it falls; some women sitting near me were commenting that the man sitting next to me didn’t pick it up but they were sitting near enough to reach it and didn’t help. I see people with buggies being helped on and off trains or up stairs I’ve even helped in the past but being disabled people get annoyed because I don’t run up and down the stairs or because I need to use the handrail or have mobility aids that take up space.

I know my usual audience aren’t the type of people this post is about and I’m sure plenty of you will be sitting there nodding knowing exactly what I mean so I hope that this post forms some kind of a bond or solidarity with the disabled people who take up space, who use transport, who have to try and navigate an abled world. And if you are a non disabled commenter please offer someone a seat, ask if they need a hand, done be a commuting cockwomble.

There’s nothing more to it, I just get through it

My motivational coaster at work

My motivational coaster at work
A brightly coloured coaster saying punch today in the face

I’m struggling. As a mental health blogger you’d think that would be easier to say than it is, it’s probably a combination of reducing my Quetiapine, a new job and being utterly exhausted but either way I’m not feeling great. I admitted I was struggling at work yesterday and told my manager that I spent last Friday crying at my desk because I felt so isolated being alone all day, i probably work in the most understanding organisation for someone with mental health problems and despite a fuckton of therapy I still find it hard to admit that and ask for help.

I don’t feel that I’m hard on myself I just think I should be able to manage though of course my brain is now telling me this was all a mistake and that I knew I’d fuck everything up it was inevitable that I wouldn’t be able to cope blah blah blah. It’s one thing when these thoughts are conscious because then I have some control over it but this is like a running commentary in the back of my mind it’s not me deliberately putting myself down but it won’t stop and I don’t know what to do to shut it up. I’m still working out boundaries and what is the right amount to share with people, I feel like I overshared yesterday to someone who isn’t my manage who doesn’t need to deal with my mental breakdowns and now I simultaneously want to crawl into a hole and die and also apologise repeatedly (not sure if this is a mental health issue or just being English).

I do have targets to meet I do have things I need to do and achieve but I’m not under pressure these are things I have a year to do and everyone keeps reminding me it’s only been three weeks so it’s not that. I have a psychiatrist appointment in just over a week and I’m hoping things have levelled out a bit by then, if I’d known it would take several years to come off this medication I might have thought twice about taking it though not everyone has such difficulty with medication adjustments so how would I even know this would be so hard.

Attachment issues are naturally coming out to play because I feel low and I want to cry constantly (which is actually really unlike me) so once again having thought I was feeling ok about someone I suddenly miss them again.

This was disjointed rambling but I wanted to actually start and finish a blog in one go rather then going back and making sure it was post worthy because my head is disjointed rambling right now and I need somewhere to dump it all, I guess one positive is I have no desire to self harm and I’m still over 5 months free.

I just keep on keeping on

Working 9 (30) – 5 (30)

A photo of me at work wearing pink glasses and a black top with my chin resting on my hand looking stressed

I took part in a photo project on Facebook for people with chronic illness a few months ago and balance was one of the prompts that stood out for me, people talk about a work life balance and having a life outside of work but another type of work life balance for me is the balance between how I’m seen as a member of staff and a person with mental health problems.

My mental health isn’t a secret it couldn’t be if I wanted it to be not just because of this blog or the very obvious signs all over my body including my hands (big regret) but also because I came into the organisation as a service user which is something I make no secret of but at times it’s hard to know how others see me. This may be my own internalised anxieties or not feeling good enough but I find it hard to know whether at times of stress I’m see as a stressed or frustrated member of staff like any other or if I’m seen as a person with a mental health problem overeating as a result of their mental health.

Again this may be internalised anxiety and probably a generous dose of feeling like I don’t deserve help or that I shouldn’t ask for help and should be capable and prove myself (probably mostly the last part) but because I feel like I should be able to cope and I’m afraid of being seen as incapable I find it really hard to say I’m struggling at work. I know I keep going on about how scary it is that people having expectations for me to live up to but Friday afternoons seem to be the time my brain likes to have a breakdown and I even got left off work early for being mental today, being overtired and alone all day meant I spent more time crying at my desk than actually working.

My mental health and volunteer experiences help me support my volunteers but I worry that I’m seen as less professional especially because of my self harm and the fact that I don’t cover my scars or that people will think I’m not capable; as it is I’ve been judged by professionals when I’ve attended consultations or panels as a person with lived experience or service user rep, metaphorically patted on the head or had things I’ve been dealing with for years explained to me with a patronising smile and yes some of these people may do it to everyone but when you’re trying to prove yourself or been seen as more than just a token or a tick box to satisfy a requirement it’s that bit more frustrating. I keep being told that everyone experiences anxiety at the start of a new job and it’s normal to have doubts but again this is where the difference lies because I always feel I’m waiting for people to see through me and tell me this was all a mistake.

This blog is a bit all over the place but what (I think) I’m trying to say is that the balance between work and life is more complex for me than just work and outside work.

This existential crisis was brought to you by caffeine and chocolate.

Merry Christmas from Georgiesaurus

The Perks of Being a Dinosaur Christmas.jpg

Merry Christmas everyone however you’re spending today I hope you have a safe and enjoyable time, if you need support today or any other time please see the resources below, if you’re in crisis please go to a&e (even though it’s shit).

Thank you to everyone that’s supported me with blogging and supported the blog,

Look after yourselves.

Georgie x

Samaritans

Childline

Papyrus

CALM

Mind

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