HOW MUCH?

I was talking about uni fees and EMA cuts with my mum & P when we went to the British Museum last week; and there have been a few thoughts bumbling through my head ever since.

Now, I didn't get an EMA - although I would have qualified had I gone to the local state whatever, because of where my parents worked, I was in private education (government-funded, but private nonetheless) and I didn't qualify. I wouldn't have even thought to apply, to be honest. But that doesn't stop me from seeing it as a lifeline, or as the single deciding factor in whether or not someone stays in school after GCSEs. It might just cover bus fares, or food, or uniform - but that is what makes the difference; school education might be free in this country in that we don't have to pay fees to go, but there are other associated costs. Cutting EMAs is effectively cutting opportunities before they've really even gotten started - forcing kids to abandon their education and start work in a job market where 16-24 year olds have the highest rate of unemployment of all working age people.

As far as fees go - mum mentioned something a collegue had said to her about the cost not being that high; it's only £9000 a year maximum. However, assuming that most unis will put their fees up to maximum, as they did when top-up fees were introduced, we can use it as a standard figure. Let's assume that the average student goes to university for three years as an undergraduate - that's £27,000 of fees. It's not a lot if that's what you've paid for your kid's education every year since they turned 13 - but it's more than a lot of adults earn in a year (nine grand is more than some adults are able to earn in a year, and this assumes that the hypothetical student is able to find a job that pays this much while allowing them time to study properly).

But that £27,000 isn't the only number - it's just for one thing. It doesn't cover cost of actually living - and I'm not talking about going out on the lash every night; I mean rent, food, utilities - the basic stuff everyone has to pay for.

Most universities in London tell their students to budget £100-150 per week for rent alone; UCL advises a weekly budget of £245 per week for everything. I don't really know what rent is like outside of London - but I imagine it'll be a little cheaper; however, because London is expensive, let's continue taking London as an example - living costs are going to be roughly £9500 per year - a further £28,500 needed to go to university. I'm sure there will be companies willing to loan that to students as well as their fees - making a charming £55,500 loan. Which is more than my mum's mortgage. Brilliant. And I thought being able to pay for a MA was going to be tough.

the fog

I am hoping it is not going to snow at all. I hate snow - I mean, it looks pretty, it's fun, but it's fucking nasty to walk on, bloody cold, and gets everywhere. I'm such a grump with the cold.

The grump is not being helped today by the raging headache currently occupying most of my skull. It appears to be pushing my brain out, because I spent most of the day in a complete fog. Although that may have been caused by the tramadol I was prescribed - which I'm not sure about; I think the headache is also a result of the tramadol. I'm genuinely not sure if a painkiller that gives me a splitting headache and massive brainfog is going to be worth not having a sore back - I take painkillers so I can function, not so that I can spend the day sitting on the sofa in a heap going "whaa?" I might keep them for the really bad days, of the sort where I wouldn't be trying to go anywhere anyway.

I've finished my first essay for uni, or at least I've reached the point where I've run out of sensible things to say. I'm not happy with it (when am I ever?) and I don't really want to hand it in, but the deadline is tomorrow, I don't know what else to say, and I hope that it gets a halfway decent mark. Either way, I get plenty of feedback before I have to write the next essay - for which I need to choose both a movement and a gender/sexuality theorist to interrogate it with - and I'm sort-of looking forward to that. It'll be interesting at least. I just need to ask my tutor if we can meet somewhere easier to access, as his office is up so many flights of stairs I'm pretty much ruined for the rest of the day.

Talking of stairs - dear people who own/run large buildings: you have a lift. Please ensure it is accessible to those of us with disabilities that neccessitate the use of a lift. Thanks. (Dear boss and fellow employee: thank you for running all over the building to find the lift and get it to take me up to the office, you guys rock so very much).

Have some pictures from a trip to the British Museum (incidentally: my former primary school teacher is awesome. We got carted all over the museum to look at a tiny wee cup with men shagging on it; clearly, she has had a great influence on me).

I think I need rails for the bathroom

Yesterday was bloody chundering awful. Thankfully I don't get days like yesterday very often, but getting them at all is bad enough.

Yesterday really started on wednesday. I wanted to go to the demo - incidentally: sign this please - but realised, when G was leaving for work that I was just drained. So I stayed in bed and slept a little. Then I got up, and walked the dogs as usual. And that was bloody exhausting. I was supposed to meet a friend in town, but thankfully she cancelled - and so I did some research on my uni essay from home (thank the internet for google books) and by the time getting ready to leave for uni came around I was fucking wiped.

So I didn't go, and I felt a bit crap about it. I hate having to miss things, especially uni, but I was supposed to go into work on Thursday, and it was only a film, and... I was just so damn tired.

Went to bed on Wednesday, and I woke up on Thursday feeling like someone had set my spine on fire. Which is always a good sign. And then I discovered other parts of me hurt, and I couldn't really stand, so I called G, sobbing, to get him to come and walk the dogs because Boy Wonder couldn't make it, and I crawled to the back door to let Holly out... and crawled back into bed until G arrived.

I hate having to get G to help me shower (the issue is mostly getting in and out), I hate not being able to walk the dogs, I hate that all I did was sleep and sort-of watch tv.

I hate that people like me are called scroungers, and that people think we're lazy. I won't apply for disability support, because I know I won't get it - I don't need help with "everyday" tasks, not everyday at least.

Bollocks to all of it. Days like yesterday remind me that I'm sick, that I'm disabled.

Then I read this and think that at least I'm not there. Yet.

my camera lives!

I gave up searching the house, and bought a new camera cable last week - no doubt the old one will now appear, but last night I finally got around to uploading the photos that had been waiting since september.

Crystal Palace:

Crochet:

Boy Wonder's Graduation:

Frankie & The Heartstrings at the Lexington

And London with Patience's family and Lauren. I still haven't got the ovaries to write about Owen's funeral. It happened, it was lovely and terrible all at the same time. The urge to hug Patience & his family repeatedly has still not subsided. But we went into London and there was sightseeing and doc martens and tattoos and I hope it helped for a little while. I took photos, until I decided it was raining too much.

***

I have an urge, at the moment, to embroider. I think I shall. I want it to say something like "rational secular humanism condones this mess" but I don't want to cross-stitch, which is my usual medium for words. I want to do something more arty.

I should write my essay, do my job stuff, and do the household budget though. And the washing up too.

Indigo says "rrrrraaaaargh scawy monstar!"

Remember Remember

Indigo does not like fireworks.

He's currently pacing about the house, trying to settle - then something goes bang and he decides that if something is going bang, he needs to find somewhere else to be, because maybe things won't go bang there. He's dosed up on Rescue Remedy, and I'll give him some peanut butter once he's sat down for long enough, but there's nothing to do except wait it out - hopefully, as fireworks night (and Diwali) was yesterday, tonight will be a little more low-key.

Holly does not give a shit about fireworks. Unless they're somehow edible.

I am invisible.

Since the cuts were announced, I've been trying to think of something cogent to say, and failing miserably. I manage sensible for about thirty seconds, and then just get so bloody angry I end up waving my hands in the air and swearing even more than I usually do. It got talked over at uni last night, whether we're planning to go on the demo on the tenth (conclusion: yes) and which of us is the most pissed-off.

So I'm not going to talk about the cuts right now; others have said what I want to say, in better ways. Instead, I've been inspired by the most excellent Broken of Britain, and I'm going to talk about being disabled. Being broken.

A little background - I have fibromyalgia. I don't have enough spoons.

Yesterday there was a tube strike. I go in to uni one day a week; that day, I had a meeting with my tutor, books to return to the library, a lecture, a seminar, and a friend's birthday. I needed to go into central London.

I did some work that morning - nothing dramatic, a couple of hours at the computer emailing and phoning people, and I walked the dogs. I left the house just after four, having tried to get ready in half an hour and failed miserably. I got the train to Victoria. I got on the tube at Victoria, squashed in like a sardine. I got a seat after a couple of stops, and decided it was going to be ok. I went to Euston. I stood in the drizzle for twenty minutes for a bus, knowing that a twenty minute walk was a bit much right then, especially as I had to be coherent and functional for the next three hours at least.

I got on the bus. I was half an hour late for my meeting, and my tutor was ok with that. Incidentally, my tutor's office is on the second floor, up several flights of very steep stairs, where there is no lift. I didn't know this; my first reaction was to sit down and try to explain that I needed a couple of seconds. The problem with not being able to do much exercise beyond half an hour strolling with the dogs every day is that you don't get to be particularly fit.

Dr M, said tutor, is very nice. He put up with the fact that I relied utterly on notes to tell him what my essay was about, and that I made more notes as we spoke. He was happy to talk about my dissertation, even though I was forgetting words for things and couldn't actually remember one of the topics I want to write about, and said "thingy" a lot.

***

It's strange, when I read how I write about my day. There is no "I went to see Dr M in his office" for me. It doesn't work like that. It is important to me whether that meeting takes place on the ground floor or the second, whether I walked there or took the bus - because each tiny detail has a direct impact on the number of spoons I've got left after completing a task. I don't simply get up, I wake up, stretch, see what hurts where, I sit up slowly, put my feet on the floor, I take my meds with a drink of water, opening blister packs and pill bottles, I may or may not take paracetamol, depending on how much I hurt and whether or not I've already got a headache. Then I stand up, pushing myself off the bed with my arms and using the wardrobe to stop me from falling over too far. Getting up doesn't really encompass the energy required.

***

Back to yesterday. After walking back down those stairs, clinging to the bannister because my balance is a bit shit and I don't want to fall over, I walk around the block to the library. There's a lift, thank goodness. I take the lift, renew my library card, and then return my books. Just enough time to do this, I have a lecture now. Lift, out, across the road. Up the stairs, in. Down more steep stairs, holding on to the wall. I'd take the lift, but I'm late and it is slow to come down from the fourth floor.

My lecture is good. Lynne Segal is awesome, and interesting, even if she does speak quickly and ramble a little. I make notes furiously, trying to keep up. I am also recording the lecture, knowing that if I don't manage to write it down, I'll forget it. But I enjoy it. The seminar is good, I get a little break to wind down a little in between. I have run out of painkillers, not thinking to check that the box of ibruprofen I put in my bag actually holds anything more than an empty blister pack. My back hurts, partly from carrying books, and partly because it just does. I talk to M about Stephen Fry's comments, and about the BIGS seminar on friday. I don't make notes in the seminar, but I do get to interject a comment about Christine de Pizan.

After the seminar, a group of us walk around the block to Birkbeck itself, where we take the lift up to the bar. I get a pint of cider, and a seat. We talk about glasses, tattoos, acrobatics, parents, dating, the cuts, theatre. We discuss the waves of feminism and Segal's lecture, at least a little. I get another pint and some crisps. T wants to go out dancing. I'm tired; the seat is more of a stool and my back really does hurt. I get my stick out, and announce I'm going home. Goodbyes are said. Nobody raises an eye at the stick, they know I need one sometimes.

I run into a knitter sort-of-friend outside the library, and stand and chat a bit. Shouldn't have stood. Did I mention my back hurts?

I walk to the bus stop, slowly. I wait for the bus. I wait a bit more. Eventually, a bus comes along. I want to go to Oxford Circus, but I've been waiting fifteen minutes and this one goes to Tottenham Court Road and it's already after eleven and I hurt. I'm also bone tired, as opposed to the merely a bit tired I felt when I was sitting in the union bar talking about the demo.

At Tottenham Court Road, I discover that the Central Line is no longer running, so I have to either take the northern line or walk to Oxford Circus. I decide on the northern line. Thankfully there is an escalator - but only part of the way, then there are stairs. Then I have to get through the crowds of people, saying "excuse me" every time I need to get past. I thank the teenager who moves before I get to him. The northbound platform is less crowded, so I wait on that - there's nothing to lean against on the other platform, and I know I won't get on the first train. So I get the train north, away from where I want to go.

I should probably mention this. I have purple hair. I am a size 16-18. I was wearing doc martens. I'm of average height and while generally unremarkable, I am fairly visible. I am carrying, and leaning on, a purple walking stick.

I am pushed out of the way by a few people, fuck it, I'm slow. I get on the train anyway, and move to stand in the middle of the aisle. There are no seats. Several people stare at me - I get that a lot; I am young, wearing a skirt, I have large shoes and bright hair, and I am obviously physically disabled. Not one person offers me a seat.

I cling to the pole, the knuckles on the hand holding my stick are white as I lean first on that and then on the pole, trying to keep my balance. If I fall over, will anyone help me? Will I be able to get back up?

Euston. I get off, moving slowly. I get pushed about a lot by the crowd. I can cope with that, it is busy and everyone wants to get to places that are not deep underground. I walk to the Southbound Victoria Line platform - it takes me several minutes. I can feel myself getting slower with every step. More funny looks. There was a concert somewhere; emo kids on the platform look at me, a couple point and whisper. Yes, children - young people with access to hair dye and ipods can also be disabled. The platform is not particularly crowded, and when the train comes, it is half empty.

I move towards the doors. A man about my age, maybe older, carrying a small case with ease, pushes in front of me, as do a couple of other people. All of them are adults, none of them are elderly or pregnant. Everyone wants to get home; more than that, they want to sit down.

The man with the case sits, as does one of the older concert-goers; there are no more seats left. I move into the aisle; the old Victoria line trains don't have ledges to sit on or poles to hold at the end of the carriages, and there are people behind me. I am a young woman with bright purple hair, wearing a green cardigan, carrying a large white bag, wearing large doc martens, and leaning heavily on a purple walking stick.

I am invisible.

Not so invisible to prevent people staring, then looking away if they make eye contact. I cling to the pole and my stick. I want to sit down. I don't know if I can speak loud enough to be heard. I hope someone offers me a seat. I know not all disabilities are visible. But not all of the people in the carriage with me are disabled, surely. None of them are over fifty, with the possible exception of the lady at the end with the shopping bags.

I want to cry. I blink back tears. I cling to my pole like it's the only thing keeping me upright and I look at the people in front of me. I cannot stand without support. I have been on my feet for over an hour.

I want to shout. Shouting takes energy. I have more to do before I get home and it is all I can do not to fall over in the middle of the aisle on the Victoria line train between Warren Street and Oxford Circus. I cannot shout. I will not cry. I will make it home.

Nobody looks at me, I am crippled and weird and they are comfortable in their seats.

I am wearing bright colours, my hair is weird, I am not old and I am using a walking stick. I am invisible.

Nobody gave me a seat.

I sat down at 11:53, when I got on the train at Victoria. It took me ten minutes to walk from my station to my house - less than 200m away. I made it to my house, and let myself in.

Then I cried.

I cried because I was tired, because I did not have the energy to shout, because my limbs were stiff and sore and my head hurt and because when G reached to hug me it was like I was being punched. I wanted to be hugged, instead touching hurt.

I cannot walk properly today.