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The days of post gig highs from adrenaline and lack of sleep have been replaced by planned annual leave the day after a night out to recover, I can’t stand for anywhere near the length of time a gig lasts and crowds bumping and pushing me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