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.
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.
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.
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.
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.
A rather appropriate Christmas card I saw last year
I don’t like Christmas, call me Scrooge or the grinch but i really don’t enjoy it. Christmas can be a really difficult time for so many people there’s a big emphasis on joy and happiness, being around family and friends but the happy family isn’t a reality for many, my family diminished over the years with elderly members moving into nursing homes and dying and now I have no contact with my immediate family though the family Christmases I did have often were rarely happy ones.
My mental health tends to deteriorate around this time of year the run up to Christmas really makes me stressed and anxious despite knowing rationally that the day itself will most likely be fine and that I’m actually going to spend it with two people (and two cats) that I’m choosing to be with. One of the struggles I have with Christmas is that most of the things I do to support myself aren’t an option, I’m off work for two weeks, there’s a big reduction in public transport so as a non driver I’m limited on how much I can get out, health services are reduced as are most other things like council services and housing association (not that my housings are any use when they are in) it feels like the world shuts down and the prospect of over a week with nothing to do doesn’t feel me with joy but anxiety.
I need routine and structure to stay relatively sane (emphasis on relatively) though this structure is mainly external as left to my own devises I tend to spend too much time in bed or watching YouTube but the idea of days with nothing to do and falling back into bad sleep patterns reminds me of when that was all my life consisted of endless days of nothing stretching out ahead of me with little point in knowing what day it was when they were all the same, where I’d stay up half the night and sleep half the day (this was mainly a way of reducing the amount of time I had to spend around my mother) although how ever much I need routine I’m not missing getting in at 8:30 to prepare for volunteer training.
My attempts at festivity fairy lights wrapped around my crutches and stick
Christmas is also shortly followed by new year and the thought of change and reflection, I’ve been reflecting a lot recently especially on relationships as I mentioned in my last post, I’m tired of missing people especially people who don’t miss me who made promises they didn’t mean I don’t want to miss them anymore. In January I’ll be once again going through medication changes in an attempt to finally get off antipsychotic medication something I’ve been wanting for a while.
Disability, chronic illness and mental health problems don’t go away for the holidays it just means different challenges and things that can affect pain or fatigue and trying to manage pacing while still enjoying the day.
To anyone struggling this Christmas, with isolation, pain or mental illness you’re not alone this dinosaur sends love and solidarity. If you need support during the Christmas period the Samaritans are always there and comedian Sarah Millican will once again be doing #joinin on twitter for the 7th year running, have as good a Christmas as you can a big Christmas RAWR from The Perks of Being a Dinosaur.
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.
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
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.
The perks of being a dinosaur 