Of Beds and Bedrooms

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Being somewhat criptastic. Or spoony. Disabled? Certainly I have the dread Invisible Illness. I have spent the past couple of months in bed. I have also spent this morning, in a short window of relative wellness writing to my MP and encouraging others to do so too, on the subject of the reviled Bedroom Tax. For those who don’t know about this it’s a measure apparently designed to help families move into under occupied public housing -which seems fair, right? The way it works is by docking Housing Benefit for low income or non working people so that they can’t afford to live in their homes. This has had two main effects that I can see – first of all, claimants who have what is designated as a ‘spare room’ are pushed to move into private rented accommodation at whatever cost and inconvenience that entails only to have to claim a much higher rent for less space. The second thing is that this affects families with disabled members disproportionately, since they often have extra room for various reasons (storing equipment, quiet area for Autistic kid, bedroom for someone who might otherwise share a bedroom but can’t because of illness) and their home is often specially adapted for disabilities (ramp, grab rails, non slip flooring). I am not personally affected by this ‘bedroom tax’ but as a disabled person of some description I have been affected by other measures this Govt has taken in it’s war against the poor and disadvantaged, and I don’t like it.

I can’t bring myself to write a straight political post, it’s not in me. And there are plenty out there who are doing so anyway (here and in more detail here. If you are in the UK and your MP voted against repealing this punitive and pointless legislation or, maybe even worse in a way, if they were Labour and they failed to bother voting then do please write to your MP here. It’s the work of moments, really easy, and if there is ever going to be any point in voting for these lazy half wits again we need to remind them who’s actually boss. WE ARE.

The bedroom tax debate full list of Labour non-voters, all 47 of them:
Diane Abbott, MP for Hackney North and Stoke Newington
Debbie Abrahams, MP for Oldham East and Saddleworth
Bob Ainsworth, MP Coventry North East
Douglas Alexander, MP for Paisley & Renfrewshire South
Jonathan Ashworth, MP for Leicester South
Ed Balls, MP for Morley and Outwood Clp
Hugh Bayley, MP for York Central
David Blunkett, MP for Sheffield, Brightside and Hillsborough
Gordon Brown, MP for Kirkcaldy & Cowdenbeath
Chris Bryant, MP for Rhondda
Ann Coffey, MP for Stockport
Huw Irranca Davies, MP for Ogmore
Geraint Davies, MP for Swansea West
Gloria De Piero, MP for Ashfield
Jim Dobbin, MP for Heywood and Middleton
Frank Dobson, MP for Holborn and St Pancras
Brian Donohoe, MP for Central Ayrshire
Frank Doran, MP for Aberdeen North
Clive Efford, MP for Eltham
Frank Field, MP for Birkenhead
Paul Flynn, MP for Newport West
Mike Gapes, MP for Ilford South
David Hamilton, MP for Midlothian
Margaret Hodge, MP for Barking
George Howarth, MP for Knowsley
Lindsay Hoyle, MP for Chorley
Siân James, MP for Swansea East
Alan Johnson, MP for Kingston upon Hull West and Hessle
Tessa Jowell, MP for Dulwich and West Norwood
Gerald Kaufman, MP for Manchester, Gorton
David Lammy, MP for Tottenham
Ian Lucas, MP for Wrexham
Siobhain McDonagh, MP for Mitcham and Morden
Alan Meale, MP for Gateshead
Meg Munn, MP for Sheffeild, Heeley
Jim Murphy, MP for East Renfrewshire
Pamela Nash, MP for Airdrie and Shotts
Dawn Primarolo, MP for Bristol South
Joan Ruddock, MP for Lewisham, Deptoford
Anas Sarwar, MP for Glasgow Central
John Spellar, MP for Warley
Gerry Sutcliffe, MP for Bradford South
Chuka Umunna, MP for Streatham
Joan Walley, MP for Stoke-on-Trent North
Dave Watts, MP for St Helens North
Alan Whitehead, MP for Southampton, Test
Shaun Woodward, MP for Se Hellens South and Whiston

Here’s what Lib Dem MPs did on Labour’s motion to abolish the #bedroomtax

Absent

ALEXANDER, Danny, Mr
BIRTWISTLE, Gordon, Mr
BROOKE, Annette, Ms
CABLE, Vince, Mr
CLEGG, Nick
CROCKART, Mike
FEATHERSTONE, Lynne, Ms
HUPPERT, Julian, Mr
KENNEDY, Charles, Rt Hon
LAWS, David, Mr
LEECH, John, Mr
LLOYD, Stephen, Mr
MULHOLLAND, Greg, Mr
REID, Alan, Mr
SANDERS, Adrian, Mr
SWALES, Ian, Mr
TEATHER, Sarah, Ms
THORNTON, Mike, Mr
WARD, David, Mr
WILLIAMS, Mark, Mr
WILLIAMS, Roger, Mr
WRIGHT, Simon, Mr

Aye (voted with Labour)

FARRON, Tim, Mr
GEORGE, Andrew, Mr

No

BAKER, Norman, Mr
BEITH, Alan, Rt Hon
BRAKE, Tom
BROWNE, Jeremy, Mr
BRUCE, Malcolm, Rt Hon
BURSTOW, Paul, Mr
BURT, Lorely, Ms
CAMPBELL, Menzies, Rt Hon
CARMICHAEL, Alistair, Mr
DAVEY, Edward, Mr
FOSTER, Don, Mr
GILBERT, Stephen, Mr
HAMES, Duncan, Mr
HARVEY, Nick, Mr
HEATH, David, Mr
HEMMING, John, Mr
HORWOOD, Martin, Mr
HUGHES, Simon, Mr
HUNTER, Mark, Mr
LAMB, Norman, Mr
MOORE, Michael, Mr
MUNT, Tessa, Ms
PUGH, John, Mr
ROGERSON, Dan, Mr
RUSSELL, Bob, Mr
SMITH, Robert, Sir
STUNELL, Andrew, Mr
SWINSON, Jo, Ms
THURSO, John, Mr
WEBB, Steve
WILLIAMS, Stephen, Mr

Teller: Noes
Liberal Democrat WILLOTT, Jenny

***

Now then. Back to the world of me and mine. What’s weird about getting a bit better is that it doesn’t necessarily make a person feel  better. When I first got ill, or should I say when I crashed so hard I could no longer ignore the multiple systems failures occurring around my body and mind, it was really very very bad. I lost all sense of who I was – I’d forged my identity through work and socializing, like many do. I wasn’t in a relationship, didn’t have my dog, was just totally incapacitated. Actually, at first I felt a bit scared, but my brain was really foggy so I didn’t really feel much at all for weeks and weeks, running into months. Also, one of my major things was some really weird stuff going on in my back which had been giving me referred pain – so, in fact, my migraines were at a peep. I was mainly a vegetable. After a few months I took a little job backstage at the Shaftesbury Theatre with the idea that if I was used to working every day over the summer I could go back to teaching that September without too much trouble. Unfortunately, because of one thing and another, a shitty doctor, a prescription med that made me go quite mental, for a start, I missed that moment, and also couldn’t continue with the theatre work either. Between inappropriate care and medication and the continuation and exacerbation of various symptoms I actually got worse. The brain fog faded somewhat, and the back pain was less incapacitating, but the migraines got worse. A lot worse. 16+ a month is the definition of chronic, and I was starting migraines during migraines, and was lucky if I got a handful of days a month not in writhing pain. This went on for several years. A few months ago I started getting Botox treatment, and it is helping a bit. What it does is make a bit of distance between trigger and pain which in turn helps the triptans to work. I am still taking as many most of the time, but I had quite decent breaks in the summer, so when the weather hit, I actually took it pretty badly. I’d got used to being able to write, and Pattern Recognition went down well at October’s Have A Word. And they asked me back for March, so I started writing a second piece. Then the pain and the brain fog and the usual crap kicked in, but I’d had this taste of being normal and I’d liked it. Some of you who know me on facebook saw that I was really beside myself on Monday, because I had a really massive unmanageable day of pain – absolutely nothing by comparison to the endless days and nights I used to get, but now I’m not used to it, and it frightens me half to death. It’s like although the medication is all about giving me a higher pain threshold I actually have a lower tolerance to it when it comes.

Nobody Died

When I first got ill I did have a friend who berated me for having time off, and who tried to persuade me that I should use this strategy or that to get back in the game, but at that time it was impossible anyway, and what I needed to do was to rest. I moved house and learned more about pain management and meditation. Eventually, having become effectively housebound I got a dog. You didn’t know I had a dog? Here’s my dog.

She likes yoghurt, and then, for desert, she likes the carton.

I also acquired a boyfriend, no mean feat when you never really leave the house, and haven’t socialized live for several years. Then I moved house again. The first move was a transfer – my HA accepted I needed to move on health grounds, and I was grateful at first, but then after 8 years I found I wanted something else, and the tech for swapping within public housing had evolved. (Years ago you could swap, but you had to go to the council offices and look at lists – no pictures, no real details, just lists of people usually desperate to get out of whatever version of hell they were living in – nobody at that time moved just because they wanted to.) Now, of course, it’s all online. You can upload pictures, you can set up some limited search parameters, and you can swap not just because you  have to for work reasons, or because you hate your neighbours, but because you want a change of scene or a different kind of home or locale. It’s quite civilized really. I wanted somewhere quieter, and I got it. But what I wasn’t expecting was to totally fall through the floor physically. I became unutterably ill after the move. Maybe this is why I am so sympathetic towards people being forced out of their homes. I elected to move, the new place was better for me, I could afford the move, I had no dependants, but even so, the upshot was that I became extra ill on top of my ‘normal’ level of illness, and I had to ask my boyfriend to look after me, look after the dog, do everything, basically. After a few months of spiralling out of control with inadequate health care – zero continuity except for my neuro, and a lot of difficulty getting any comprehension of what my problems and needs were I finally thought “fuck it” and attempted suicide.

As you might imagine, this took some getting over as well. With a massive bolster of psych drugs and a bit of  attention to the physical side of things I got a bit better. I started having the Botox treatment, and began managing a small kind of sustainability of daily routine in my life. If I didn’t have financial support from my family I wouldn’t have managed any of this – and bear in mind both my parents are elderly and pensioners, so taking £500 a quarter for Botox is something that can’t go on forever, but I’m hoping a year’s uninterrupted use will have some overall effect.

So yeah. Yesterday’s vote. Very bad news. Moving house is recognized as being up there with divorce and bereavement in terms of stress, and I only had my own illness to contend with, and I didn’t have financial issues or children to deal with and I did have support. Imagine any number of permutations where you have extra stress on you and you’re being forced to move out of accommodation that does work for you into accommodation you will never be able to afford on your own, might be less easy to get to work from, you might have to have your kids change schools, you, your partner or your kids might have sickness or disability issues that can’t hope to be addressed in private accommodation and you have a glimpse of why the Bedroom Tax has got so far under my skin.

Work done, we may now rest

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We were running out of poo bags so I tipped the whole basket of Poppet things on the floor to fish out any that were left straggling.

Poppet, on the other hand, decided to help herself to various balls and toys, take them into the bedroom and work on their annihilation. I didn’t even know she’d be particularly interested in toys indoors any more, but it seems she is.

***

Meanwhile, I have been working hard on getting a PhD proposal in, and managed to hit send one hour before midnight on the day before the deadline. It’s still not perfect, but it looks a lot more like a proposal than the noodly jazz style of writing I started off with.

This is what I ended up with;

Desire Lines – Creating the Sustainable Digital City

In Finland planners are known to visit their
parks immediately after the first snowfall,
when the existing paths are not visible.
People naturally choose desire lines, which
are then clearly indicated by their footprints
and can be used to guide the routing of paths.

Earls Court Project Application 1 | Royal Borough of Kensington & Chelsea
Cultural Strategy | June 2011

The concept of digital personhood is of a piece with an ongoing discussion within discourses about ‘what is identity’. We are individuated from others and we identify with others, and in our online groups, as in any subculture, we have ways of expressing who we are within multiple groupings. Unlike physical culture, however, we do this through the ether, using an ever mutating linguistic metre, and through a digitally specific mode of ‘sharing’ (Kleon 2012). We reblog and share everything from political information and mobilization to Lolcat macros and animated gifs rather than, for example, expressing ourselves with dress and going to a particular night club or cafe (Hebdige1979). What is unique to digital identity is it’s location online and it’s freedom from geography and from the embodied self. How that manifests in the digital realm can be as unelaborated as the daily rapport I have with my dad playing Words With Friends (without ever engaging in any kind of conversation) or as proliferated as having continuous dialogues with individuals all over the internet using more than one username each. Over a variety of IFTTT (IF This Then That) pathways, for example you can have your activity under one name show up in a stream you have under another name and host discussions of a single item through various blogging platforms with different audiences. 

One’s own set of digital identities can be confusing as can keeping up with those of our friends. I have been on Facebook long enough now that I have forgotten who I knew primarily from Livejournal, and who else they might know from there until someone from one part of my life comments on someone who feels like they are from another part of my life’s post. I can then have a small moment of having my mind blown that someone I know tangentially from a visit to New York is actually quite friendly with someone who I now know in person who lives in Kirkintilloch, and they don’t know each other through me. 

The virtual world is thus threaded together with lines of code running without much respect for geography. It’s boundaries are elsewhere. Underneath the user interface is the code – what is secret to the user manifests as strongly delineated fields where one may or may not interact. What is given and what is created are in constant flux, and are more or less transparent to us depending on whether we are conversant with, happy with given constrictions, or whether we want to cut across the field.

The coders and content creators of the past decade or so are frontierspeople as well as early adopters. What is interesting to me is that this generation of people are effectively a liminal group – they are people, for instance, who may have learned analogue recording techniques and photographic techniques before digital technology existed and had to work out how to digitize before scanners, digital cameras, and monitors, for instance, were in common use. But it is not just professional artists and developers who interest me, but simply the creativity of everyday life (de Certeau 1980) as manifest online. Oral histories from this group of individuals would constitute a unique archive. The age group I am looking at will be anywhere between 30 and 60 years old right now, and are a distinct group from digital natives largely through having engaged with rapidly emergent and changing technologies. 

The City/The City

Digital culture reveals itself in two ways. First, the ‘hardware’ and it’s real time and real space relationship with buildings, cities, countries, their economies and international relations, and secondly the ‘ghost in the machine’ – how we, ourselves, connect, express ourselves, and maintain social connection through work and leisure online. 

The ‘digital city’ wouldn’t even be possible as a metaphor, were it not for the time we spend there voluntarily. We can ‘work, rest, and play’ online. 

I will argue that the internet already hosts a multitude of cultures beyond the hegemony of Google, Mac and Amazon which posit the ‘user’ merely as ‘customer’. I will use Marx’s theory of Cultural Reproduction and the later developments thereof to show that despite big business and governmental wishes individuals will use the internet and it’s elaborations in surprising ways and to their own ends.

At it’s simplest, Marx says ‘every schoolboy knows’ that any viable culture is only viable if it contains within itself it’s means of reproduction. As in the petri dish, so in society. Further elaborations include Althusser’s ‘ideological state apparatuses’ which show how power reproduces itself, and Bordieu’s more culturally inclined ‘cultural reproduction’ (Jenks: Routledge 1993)

If the internet is a city, then by extension we can use it as a source of extended metaphoricity. Grounded as it is, we can map it, we can look at various ‘boroughs’ we can consider places we work and play there, and we can consider infrastructure – the very brickwork and plumbing it relies on, its’ highways and byways, and its’ social spaces.

We can consider how it mirrors the development of ‘the city’ with the emergence of the coffee house, for instance, and how tea mediated women’s society, and compare these to the social spaces online.

Imagining the internet as a city implies stratification, routedness over rootedness (Gilroy) social mobility, spaces for interactions, all the conveniences and advances of ‘civilized’ life, and like the advent of civilization itself, we are often inventing as we go along.

If this is a city then it has been a gold rush Wild West city but perhaps it is becoming another kind of city, a Soft City (Raban, Harvill Press 1974) a non linear city with direct lines to the past, personal memories and indeed legend itself. It is a city with underground passages, secret codes and worm holes leading us blinking back into the half light of a repurposed town hall for a meeting of Dorkbot. This, then, is a city where we can invent and reinvent ourselves, meeting others who share our interests or online modalities. 

Situated Knowledges/Digital Personhood – Groups and Identity

From the Cartesian selfhood of being human because we are neither machines nor animals, to Haraway’s cyborgs, we have traveled a long road. From the startling inception of the use of the fork at table to using our iPhone to identify a leaf on a ramble, we are human because we are somewhat animal and somewhat machine. If you read through to the end of Pepys’ diary, for instance, you will discover that he did not write his diary all the way to the time of his death, but abandoned it for want of a technology many of us take for granted – eyeglasses. 

All of human life is here, and it uses the technology in whatever way is transparent and useful to their needs. In the event of governmental or brand lockdowns other means are found. Agency flows through the structure stopping only to notice it when it’s annoying and either doesn’t work properly or there is any element of learning to be done. The general fuss whenever Facebook changes something is extraordinary when you consider how little it takes to adapt to a new iteration. 

How, then, do digital technologies mediate self expression, self curation, and perhaps even self deception? I will look at how we define ourselves as individuals separate from ‘the group’ and as part of groups, utilizing interdisciplinary methods from sociology, anthropology, linguistics and literature. Though historical analysis, action research and ethnomethodological epistemologies I propose to study how digital culture might reproduce itself, and how digital personhood is constructed through processes of forming and norming in social spaces online and how restrictions and regulations are mediated by individuals and groups.

***

I wouldn’t have thought of applying for a PhD except for two factors. One was that I was asked to submit, albeit casually (on Twitter, in fact!) As an art/social science kind of person I wouldn’t have thought of applying to something put out by a ‘Faculty of the Built Environment’ anywhere at all, and perhaps even more particularly Heriot Watt, which is a uni I would never have got into as a young thing.

The other reason is one you may be familiar with – the ongoing and increasing duress that people on the ESA are being put under. I’d thought if they sent me to work it’d be fine, because I’d be stretchered out within a couple of days anyway, but it’s not that simple. The whole thing is super stressful – if you read my recent post about half an hour spent at Reed then you will know that I can’t deal with this kind of stress very well, and it’s set to increase.

A recent Panorama docco, The Great Disability Scam investigated the companies carrying out the ‘work’ for the DWP (Department of Work and Pensions) highlighting these firm’s policy of cream and park. A spokesman for the DWP said this;

…which is not how the private companies commissioned to roll out “support” are doing it.

currently too ill to work – not something they give any quarter to.

the right support- yeah, right. These companies are staffed by sales staff. They are not specialists.

when they are well enough - from April we will be treated as jobseekers, with all the proving you are seeking work and appointments that that entails.

gradually – we are being pressured into taking a self employment route which will be supported for one year if taken before April.

One of the firms employing these functionaries was ratted out by an ex employee who told Panorama  “Triage call their disabled clients LTBs (lying, thieving bastards)” It is interesting to observe that in order to dehumanize their clients enough to justify their cruelty the Triage ‘workers’ employ hate speech.

“Monsters exist, but they are too few in numbers to be truly dangerous. More dangerous are…the functionaries ready to believe and act without asking questions.”
― Primo Levi

Were I to be accepted for the PhD it would take me out of this war of hatred against the vulnerable for three years. At least if I got the thing, if things are as bad in three years time I can insist on them calling me Doctor.

This Year, Last Year, Sometime, Never

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austin kleon

And good morrow to you! I take it we have all given up on resolutions? Good.

GrrrlFever Zine Issue #1

I reject virginity and I reject nominal ‘New Years’. Since I am a bit of a howler what I don’t reject is the full moons and the shiftings of the year. Straight after the solstice I was heartened to think that the days will, though still dark, be getting lighter forthwith.

I am not good with anniversaries of any kind. I find them… implausible? I keep a count of how many years I have had Poppet – it’s easy because I went to get her on xmas eve three years ago. I know I am fifty, but when I was forty I had to be 39 twice because I’d lost a year somewhere. This is as it should be, in my opinion.

And now I give you a tumblr collection by way of a new year’s gift elaine4queen.tumblr.com/day/2013/01/03

donald edwards