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The days of post gig highs from adrenaline and lack of sleep have been replaced by planned annual leave the day after a night out to recover, I can’t stand for anywhere near the length of time a gig lasts and crowds bumping and pushing me not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.

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.

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.

New year same old Dino

new year
An illustration of a man with a purple background with the words I can’t believe it’s a year since I didn’t become a better person.

Today the perks of being a dinosaur turns one, my little blog is growing up fast *wipes a tear from my eye* it’s also the first blog post of the new year, I don’t really go in for the whole new year new me thing, sure 2018 will bring new experiences and changes just as every day, week, month does no matter where in the year it is and 2017 also brought some big changes with being discharged from all mental health services for the first time in about 8 years, important people no longer in my life, leaving behind toxic environments that were detrimental to my mental health and not staying because it was the only option of support and probably the biggest of all was having my training recognized as not just good but worthy of actual money and being paid for and getting a job closely followed a second one.

None of these things have been without challenges and people who know me well will know I’ve had times where I’ve felt overwhelmed by the changes, I’m now pulling back a bit and slowing things down I’m recognizing that is all new and that I don’t need to try so hard to prove myself. This blog was another new thing for 2017 and it’s still going and people read it which is still a surprise to me, I find writing helpful often during the writing process of creating a blog post it starts to unravel things in my brain a bit and the connections seem to form better even though people say I’m articulate I still find writing easier than speaking though talking and opening up is less of a struggle than it was, I certainly never thought at the beginning of 2017 that I’d not only get on well with someone I’ve only been working with for 6 months but also disclosing things about really difficult points in my life.

When I was writing training at work I wrote long notes almost scripts to go with the slides, when it came to delivering the training I didn’t use the notes as much as I’d anticipated and on some days not at all however writing those detailed notes really helped to get all the information together in my brain from whatever dark and dusty corner it was hiding in and blogging is like that for me. I’m quite a hands on person and enjoy the interaction with volunteers and service users I tend to write these posts on my phone then email it to myself and upload it from my laptop although my hands would prefer it if I used speech to text my brain finds the physical action of writing (or typing better).

So for 2018 I hope to write more, get better at and feel more confident in promoting the blog and sharing it, I want to work on turning myself into a brand and personal development and utilizing my social media better. So happy first birthday blog and thank you to those who’ve been reading since the start and those who’ve joined along the way I hope there are even more people reading this time next year.

BoPo or BoNo (body positivity and disability)

IMG_2457
A collage of 4 photos of me with Domo-Kun a large brown Japanese TV mascot

 

I am not body positive, I won’t go into too many details about the concept of body positivity itself because there are many people who can explain it far better than I can but the short explanation is that it stems from the feminist fat acceptance movement and aims to encourage people to feel better about their bodies it has also become a campaign for inclusion for those that aren’t always included in movements surrounding self love like fat people, Queer and trans or genderqueer people, people of colour*, disabled people.

I fall into more than one of these categories yet for various reasons I don’t feel a part of the movement. For as long as I’ve been self aware I’ve disliked myself, I don’t say this for sympathy or pity and I don’t want comments expressing that, I don’t doubt that a lot of this is due to upbringing and bullying at school and at home. Ableism and fatphobia were part of my childhood, I’ve been disabled since birth and dealing with unrelated chronic problems problems for several years and mental health problems since I was a teenager.

I’ve struggled with my weight for years and for most of my life I haven’t felt like I fit in anywhere, not able bodied but not visibly disabled or as impaired as disabled peers; even in school when trying to express this feeling to the head of special needs I was faced with ableism, I also never quite felt comfortable with my gender and sexuality. For several years I fought for a diagnosis and explanation for my chronic pain and finally last year I saw a rheumatologist and had an MRI scan and while getting answers was a relief it meant the fight for answers was over and I had to accept that this is my life now. People often say there’s a period of grieving when you become disabled and I didn’t think this would happen to me but it has, I’ve been really angry at my body and frustrated when there are things I can’t do that a few years ago I could, its hard accepting my wonky, bendy, tired body and facing my limitations, I know I’m not severely disabled and other people have it worse but that doesn’t help me.

It’s really hard for me to feel any love towards my body when it lets me down, holds me back, doesn’t work the way it should it causes me pain and fatigue, my joints go out more than I do and I often feel like I’m 92 not 32. Sometimes it feels like not being body positive or embracing and accepting my size and shape makes me a failed feminist; its actually refreshing to see people I look up to who that are plus size who openly share photos of their body both as a job and on their personal social media say they’re not body positive, its not that I want them to feel bad about themselves its more that I respect their honesty. There are also disabled people and people with chronic pain who are body positive though I know it’s a process and not something that just happens overnight.

In some ways inclusion is improving, especially with a growing number of plus size models and general visibility of fat people who don’t believe they should cover up or hide their body yet there are still flaws especially with disability. Scrolling through Instagram looking at the bodypostive, bodyposi and bopo hashtags shows lots of plus size people yet there’s a lack of (visibly) disabled people and many of the messages that come with body positivity have undertones of ableism such as the focus on health and healthy is the new skinny which are also problematic for people who eating disorders or people in recovery from an eating disorder, then there are the concern trolls who target plus size people and fat shame them by acting as though they care about the health of an overweight person (lots of disabled people are overweight because of health problems not the other way around). Big media campaigns like the Dove real beauty also fail at disability representation, are disabled bodies not beautiful? Disabled people are also subject to intrusive questions about their bodies from being asked why they use mobility aids to questions about their sex life and even accused of faking having a disability.

real-women-dove
Dove Real Beauty

The lack of visibility itself is ableist and sends out the message that only non disabled people should feel good about themselves and how they look, for something that is meant to be about inclusion it really needs to be inclusive and not just for one group of people because that’s not how diversity works. Feminism itself is often accused of being only accessible for non disabled white cis middle class women who have received a good education (I’ll be ranting about that soon) in an ever increasing digital age the body positive movement could be one way to change that by utilizing social media as a more accessible platform.

*Other groups of people also face exclusion especially people of colour but no one wants another white persons perceptive

Awesome people to check out:

Fullerfigurefullerbust

Annika Victoria

Body Posi Panda

Glitter and Lazers

The Feeding of the Fox

Chronically commuting

A picture of me with London Underground roundel face paint

There are temporary toilets at Euston, fascinating I know but this meant walking from one end of the station to the other a minor inconvenience for many but something simple that ate into my already rapidly reducing energy supply.
If my body had a battery symbol it would currently be edging towards red, unfortunately I can’t put myself on low energy mode and I still have to get home. A simple thing like using the toilet or accessing public transport can become a mission when you’re disabled, people who live with chronic health problems and limited energy will talk about the importance of pacing (something I’m pretty bad at I am however an expert at crashing and burning) but along with pacing comes planning. Most people plan a journey especially if it’s somewhere unfamiliar or timing is needed but planning the most accessible journey involves more effort than a journey from A to B.

The standard London transport tube map

I’m not a wheelchair user and I can manage a limited amount of stairs so I’m less restricted than many other disabled people but the London Underground is not disability friendly (I’m not unaware of the age of the system and challenges in making it more accessible) but after working out where I’m going the next step is seeing if there’s a lift and whether that’s for all the station or just parts of it, is there a reduced escalator service (my balance and coordination and using a stick make escalators a challenge), if I get on a train part the way along the line can I get a seat, how far will I have to walk from the mainline to the underground. Often I’m tired before I’ve even started.

The accessible tube map

Energy isn’t just expended physically though, social interaction can be draining, thinking, talking, trying to follow the flow of a conversation can also be tiring especially when you throw in the neurological problems I have as a result of a brain injury at birth which left me with hemiplegia (I seem to have unknowingly won some kind of anti health lottery) all these things can add to fatigue and despite my  love of the city i can’t deny that Londoners are not the most patient people to be crammed on a train with.

People dismiss the idea of FOMO as another trivial millennial, Generation Y non issue but when you’re already several years behind your peers it’s hard to say no and slow down even when you should. Chronic illness, mental health problems, disability often do mean missing out of things or choosing one thing over another and in an age where we can see more and more of what people are doing with their lives without having to spend time with them it’s hard not to feel it.

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