Category: disability

‘Freedom day’

Four face masks with cartoon animals on them
Four masks from Sugar and Sloth

Tomorrow is ‘freedom day’ when the final lockdown restrictions are lifted. What freedom people are currently lacking is unclear but some things I’ve seen are – having to wear a mask, having to check in at shops and restaurants and not being able to meet as many people as they like, apparently this is oppression and we can’t keep wearing masks forever because it’s not normal.

After the first date for ‘freedom day was delayed anti-lockdown and anti-mask (or pro death) protesters marched through London demanding everything be opened up again. They walked passed open pubs, open cafes and restaurants with indoor dining and into an open shopping centre which then had to close because of the disruption they caused (I bet Alanis Morissette didn’t see that one coming).

Cases are rising rapidly despite vaccines, younger people are contracting the virus, there’s another mutation that has been allowed to spread rapidly and again we’re told that more people will die.

Freedom for disabled and chronically ill people looks quite different, the office of national statistics says that 2.2 million clinically extremely vulnerable (CEV) people were advised to shield. This meant not leaving the house at all unless absolutely necessary, many relied on government food boxes or support from local charities and mutual aid groups that sprung up during the pandemic.

People who are CEV especially those who are immunocompromised are getting told to shield, some people haven’t been out since the start of 2020 and the vaccine may not even work for immunocompromised people or those taking immunosuppressants. Since the start of the pandemic there’s been this message that it only affects the elderly and vulnerable, aside from this not being true these people are not disposable because they’re older or disabled but they’ve been throw under a bus and allowed to die in order to give other people their ‘freedom’.

The other other used phrase (apart from wake up sheeple which makes me want to stab someone in the eye) is of you’re scared stay at home and let people who want to live go out. People who are shielding don’t want to have to stay in or have to avoid contact with their partners, they don’t want to go a year without seeing anyone or not getting the medical or social support they needed and they shouldn’t have to stay in forever because others are too selfish to wear a mask or any other minor sacrifices.

July is disability pride month and once again disabled people are being left to die or excluded from society this time to please the people that are tired of the pandemic. We have to learn to live with the virus, let the bodies pile up on the street and pretend to care with gesture politics like clapping because making sure people can go to the football and trade deals with India are more important than saving lives.

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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.

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Managing

I don’t have an issue with taking the easier option, I’m not going to take the harder way of doing something if an easier option is available, why struggle to add something up if there’s a calculator available? Why carry a suitcase if it has wheels? Why use a tin opener if there’s a ring pull?

But when it comes to being disabled i tend to manage before going for the easier option or the option involving using aids or adaptions I’m more hesitant to do what’s easiest. Some of this is about other people’s perceptions or questions, when I first started using a mobility aid I was so anxious about what people would say because I was going from having an invisible disability to a visible one and suddenly people became aware of the accommodations I needed (not completely but more than they had) you can thank social anxiety for me not asking for accommodations before or even after I still prefer things like badges or lanyards to talk for me.

My partrner recently moved and the new flat has a bath with a shower attached but there are no handles or grab rails; at home my bath has handles and a grab rail and that’s a struggle. I put grippy duck stickers in the bath I told myself it was fine and I could manage but then I caved and got a shower seat of course I still questioned whether I needed it because I was managing without.

A white slatted shower stool in a white bathtub
The latest accessory

On Monday I used my shower stool and it really made things easier, I could spend longer in the shower, I used up less energy, was less anxious about falling over and I was able to wash my legs and feet without the risk of falling.

Managing isn’t everything, I can manage to walk unaided but it’s harder, causes more pain and fatigue and I’m more likely to fall over, I could manage at cons and outdoor events without using my crutches but it would be exhausting, my hips would hurt so much I wouldn’t be able to walk the next day and I wouldn’t be able to manage without a lot more help than I already get especially on wet or uneven ground (shout-out to my service Teffy).

Sometimes it’s not enough to just manage and if there is a way to make things easier don’t settle for managing.

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You are creating all the bubbles at play

Two grey train station benches both with red signs warning people not to sit on them due to social distancing
Why are we waiting? Seats you can’t sit on

I’ve mostly avoided public transport and the public in general since March however in the last couple of weeks I’ve made my first trip south and back and used trains again. I know I’ve blogged about the difficulties of using public transport as a disabled person before but travelling during a global pandemic with social distancing measures makes it harder.

The current recommendations for distancing are two meters where possible or 1 meter+, buses have blocked off some of the seats, benches have every other seat taped up and all forms of transport are meant to limit how many people use it at a time, face coverings are also mandatory*

The problem is people who need to sit down and especially those in need of a priority seat are at a disadvantage, the majority of priority seats on buses are not in use, non disabled people** sitting in the seats nearest the doors on the trains force disabled people to walk down to train or stand and a lack of benches at stations again forces standing or sitting on the floor which is dirty and unpleasant even when there isn’t an increased health risks, despite wearing a hidden disabilities sunflower lanyard, a please offer me a seat and wrestling with a suitcase and mobility aids people still seemed still seemed oblivious to my existence (I don’t like asking in case someone is disabled).

A light green lanyard with small sunflowers printed on it
A sunflower lanyard from the hidden disability scheme

Masks are a struggle for some disabled people too, they’re claustrophobic for people with anxiety, can be difficult for people with sensory issues and can make communication hard for people who lip read.

There are many ways in which the pandemic is harder for disabled people than non disabled people especially struggles around accessibility and the easing of lockdown restrictions keeps bringing more challenges.

* Apart from people who are exempt

** I know I can’t tell just by looking at someone whether they’re disabled but I find it unlikely that every single person sitting at the front of the bus or nearest the train doors is disabled.

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Sing little darling

Sing with me

Blue, green, red and white laser beams pointing in all directions around s concert venue

I love live music I love going to gigs even though I don’t do it that often it’s something I really enjoy. As a rather emo teenager I’d queue up in the cold wearing just jeans and a t-shirt arriving several hours early to guarantee a place at the front by the stage with only the bare minimum of possessions with me to avoid the need for a bag. I would far rather be crushed and sweaty in the mosh pit than sensibly seated or in the less crowded areas at the back.

My first and only festival experience was not something I’m keen to revisit, between the lack of sleep, disrupted medication schedule and discomfort of camping day festivals and open air gigs are more my thing with a comfortable bed to return to

The days of post gig highs from adrenaline and lack of sleep have been replaced by planned annual leave the day after a night out to recover, I can’t stand for anywhere near the length of time a gig lasts and crowds bumping and pushing me not only increase my anxiety but cause physical pain and my rock my already shaky balance.

Today I’m paying for last night although the pain and exhaustion are worth it for such a good time seeing First Aid Kit a band that although I haven’t been following for long I’m now a big fan of and really love the music of, they’re also amazing live but despite some of the perks of going to a gig as a disabled person like queue jumping or getting a carers ticket for free I do wish I could still be near the front and not forced to be seated out of necessity.

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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.

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This indecision’s bugging me

One day I’m going to be sued for my constant use of song lyrics

 

AGM
2015 Georgiesaurus speaking about being a Youth Wellbeing volunteer

Recently things have been relatively OK I’m not saying it’s all wonderful but mentally I’ve been reasonably stable; I’ve had my first medication increase of Lamotragine and it’s hard to know whether it’s helping or not as this is probably the first time I’ve not been in crisis or extremely depressed when changing or adjusting medication, to add to this today I got a letter from the mental health team offering me an appointment in March with the recovery and support team presumably following on from the referral the psychiatrist I saw in December made. Yesterday I saw a friend I haven’t seen in a while and was telling her that I’d stopped going to the group I’d been attending due to it being a toxic and unsupportive environment that made me feel worse not better so with the recent mental stability getting the letter about the mental health appointment has just added another decision the think about, if I’m offered more treatment will it make things worse? Do I want it? Is it suitable or would I be better off considering something else I’ve been looking into?.

Life doesn’t come with a manual, I’m still trying to find out who I can complain to but for now I have to try and work things out myself and try and decide what the right thing to do in certain circumstances or what decisions to make when opportunities come along. One of the problems is that opportunities don’t always come along at the right time and that’s without the complication of not knowing when the right time is. For 7 months I’ve been working and earning on top of my benefits (all legit please don’t report me for benefit fraud) and it’s been the best, most intense, stressful, exhausting and rewarding 7 months, it certainly hasn’t all be smooth sailing with days where I was going solo bobbing up and down desperately trying to stay afloat and times when I was drowning and having 4:30 Friday meltdowns which involved texting my manager and almost quitting.

But 7 months in the grand scheme of things isn’t that long and in a perfect world I’d have more time to prepare and put myself in the best position to take on more not just skills wise but mentally too and feel as stable and secure as I can and ready to take the next step in moving off benefits another struggle here is my chronic illness I cannot manage full time and even if I was in perfect mental health I couldn’t physically cope on full time hours. I feel that so much of my self worth recently has been tied up in this job I’m told a lot how good it is that I’m working and being payed but as much as I’m enjoying having more money it’s more the feeling of being an equal on the same level as staff and things that come with it such as socials or attending the staff away day.

TTD18
2017 Georgiesaurus running a Youth information stand for Time to Talk Day

Sometimes I think I do too good a job at treating my mental health as something separate that I’m almost lulled into a false sense of security that comes with stability when realistically I still have to fight the urge to tell my manager everything I’ve done each day if he’s not in, let him know I’ve uploaded it onto the shared drive and where so he knows I’ve been working, of course I know that not only does he trust me to work alone but he doesn’t want to know every email I’ve sent or every webpage I’ve read for the workshop I’m writing. I’ve had a few relationship anxieties too despite MBT helping me with this it’s hard to explain to someone without mental health issues that people I’ve been close to or very attached to weren’t just people I worked with and that although they have moved on it’s still at times a struggle for me.

Although I’m handling it better I’m still not a fan of change and if anyone knows where I can hand in my resignation of adulthood please let me know until then I’ll be building a pillow fort.

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Body and mind

Shark bag
A picture of a shark rucksack looking anxious wih the caption “my face when people ask what happened to my arms”

*For the purpose of this post i’ll be using the word disabled to mean people with a physical impairment, I do consider mental health problems to be a disability but for clarity i’ll refer to mental health seperatly.

So my brain whirred into action last night thanks to an Instagram post by the amazing feeding of the fox. There’s a type of self harm that’s rarely mentioned; self neglect comes up in the context of depression but even I’ve never seen a discussion around the connection between disability or chronic illness and self harm or disabled people deliberately not taking care physical needs as a way of self harming. There are times when I say yes when I should say no, times when I will push myself because I don’t deserve to rest, times when I don’t take painkillers because it’s an indirect way of inflicting pain on myself, going to places that aren’t accessible or doing things when I’m not well enough.

Any disabled person will also tell you there is a big divide in the treatment of physical and mental health problems the two rarely mix and the mental health services are not always good at recognising the impact that physical disability or chronic illness can have on mental health or that the things that could benefit you mentally aren’t always possible physically (like going for a walk or having a bath), being told I should do more exercise after I’ve explained that I have chronic pain and chronic fatigue can result in me feeling lazy and making myself do things that result in pain or injury and an increase in fatigue and related symptoms. This is where the lack of understanding or knowledge of the connections between mental health and physical impairments is such a problem because for me it can be an increase in symptoms but for others it can be much worse.

Then there’s the other side the health services who treat your body as if your mind isn’t a part of it, although I’ve always been disabled to some extent in the last couple of years my mobility has got worse and I’ve been using mobility aids and dealing with more pain and fatigue.

At the beginning of 2017 I tried to access psychological therapy for long term health problems. I wanted help accepting my chronic illness and dealing with no longer being able to do the things I used to and things people my age can do, I wanted some support in balancing my physical health and mental health. It took several months for them to tell me that they don’t offer support for chronic pain, between that they rejected me because I was under mental health services (I was in the process of being discharged and they were completely different services), they then said my self harm made me too much of a risk and they said they didn’t think I’d be able to manage classroom based psychoeducation (thanks for that).

Last time I checked neither my body or my brain can function without the other yet services treating each are still very separate and mental health services are often not accommodating for people with physical impairments and often aren’t accessible there’s also an assumption that if you’re disabled and have mental health problems then of course you’re depressed because you’re disabled because who wouldn’t be?

Ableism unfortunately is still well rooted within the medical profession and the even within the disability communities there is still too much separation of physical impairment and mental health issues.

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Better late than never (an introduction i suppose)

anime-me
A Japanese style drawing of a young woman’s head and shoulders with blue and pink hair and a piercing below her bottom lip

Because I was late even for my own birth I’m starting a blog several years too late. I’m Georgie (or Georgiesaurus in some parts of the internet), i’m chronically mental with the double luck of having both mental health problems and physical disabilities, I’ve been volunteering for a mental health charity for 4 years and have been involved in service user representation.

Too much waffle for twitter and too old for tumblr yet that millennial need to post my entire existence on the internet (having people to read it is more a bonus than necessity) a blog seemed like a good place to digitally dump the contents of my brain.

Aside from being chronically boring I have a slight obsession with a certain cosmetics company known for their bath bombs and the grumpiest DR around House MD, I live in London and spend too much time watching YouTube.

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