Spoonie Blues - and PhD muse[ings]

Majorly shitty month thus far, hence why I haven't posted; it would only be full of rage and misery, which while cathartic, would prove a very boring and depressing read.

I have other plans for today's post but, to cut a long story short, I've been stuck at home for pretty much the whole of the past three weeks, with no access to my own car, while mother has been driving back and forth to my sister's – who's recovering from a very small, totally non-life-threatening operation.  Damn, how bitter do I sound?  In normal circumstances, of course I wouldn't begrudge anyone receiving help from their mother, particularly when she already does so much for me, as my main carer.  However, nothing about my family is 'normal', or simple – whose is, I hear you scream – good point, but when you take into consideration that we moved away from living with my sister because she's a manipulative, immature, abusive and violent bitch, you can kinda see why it might grate on me.  I haven't said a lot about this in previous posts, maybe the odd hint, cos it's so difficult to discuss, and I almost feel embarrassed when I do have to talk about my family sitch.  Stupid, huh?  Anyway, the whole point of this blog was to be honest with my readers, so there you go; [some] honesty.  So, because mother's had exclusive use of the car – my car, paid for by me, via Motability – I haven't been able to get out with my enabler, SB.  And no, I couldn't have just gone for a 'walk' to town, or round the park with SB, as that would've involved mother getting me into my wheelchair before she left early in the morning, and me staying sat up all day, which I can't physically do (see The Spoon Theory to really make sense of this).

I have, consequently, really struggled to get through this month, and have had some epic rows with mother; brought on by a combination of cabin fever, boredom, frustration, exhaustion – from days of early starts – and a general feeling of loneliness and isolation.  If it wasn't for daily heart to hearts with The Wife, visits from VW and @FranBMan23, and getting out to work on two of the days, I don't know how I'd have coped.  Still not feeling great at the moment; having some pretty emotional, angry, and stressful bouts, and I have scared myself at times into thinking I'll end up like I was last year/end of 2010.  I'm hoping I've come through the worst though; mother isn't up at my sister's quite so much now, and from next week I should have a bit more use of my car.  Here's hoping, cos I'm not sure I can handle this way of 'life' for much longer.  I'm banking on the testing of a new, specially made sling on Friday that, if successful, would mean – once installed – I could be lifted and moved by my carers, rather than solely mother.  As much as I'm worried about it – the thought of anyone, or anything, new lifting me is pretty terrifying, on account of the slightest movement potentially causing a broken bone – I desperately want, no, need, for this to work.  Maybe then I'll achieve the independence that so many spoonies, quite rightly, seem to acquire so easily.

Right, on to the actual topic of this post; my PhD.  I wanted to put into words what I'm intending to research, as it's all jumbled up in my head at the moment, so it needs some organisation anyway, and what better way to do that than in public.  These are all initial, very rough ideas that I've had, based on the findings of my MA dissertation, and before I'd done any proper research.  I'm sure the plans will change, but I'm living in the moment, so here goes.

For my MA dissertation in Film, I wrote about issues of girlhood, and the representation of young women in the Disney film; specifically The Little Mermaid (Clements & Musker, 1989) and Beauty and the Beast (Trousdale & Wise, 1991).  I am going to share this work over the next few posts, so bear with me; I don't wanna give away any spoilers at the moment.  What I can say is that, as both of the above films were based on fairy tales and folklore, I followed the progression of these two stories, charting the differences between the representations of the little mermaid (Ariel, to those of the Disney generation), and Beauty (Belle).  These characters naturally became the main focus, but during my research, and throughout the course of writing up, Ursula (a.k.a. the Sea Witch) kept rearing her [very ugly] head, and proved difficult to ignore. 

Ursula brought up some very interesting issues of femininity; of being cast aside once you reach the age of infertility and unattractiveness – according to society, not my belief, honestly.  Yet, cos Ariel and Belle took the lead roles, Ursula kind of faded into the background, and didn't get as much recognition as she'd have liked.  Indeed, The Legend, who second marked my dissertation, and whose advice I will always follow to the letter, said that she would have been interested to read a lot more about Ursula, and her 'issues'.  Hint for a future PhD topic?  Methinks so.  Thus, the seed was planted, and I'm intending to follow up this idea further, by means of a PhD.

Current working title is 'The Other Woman; Monstrous Femininity and Ageing in the Disney Fairy Tale', and I'm intending to broaden my horizons – and word count – by looking at a much wider range of Disney films, and comparing them to their 'live-action' counterparts.  Fairy tales are totally in vogue at the moment, what with Sky's current ad campaign, Channel 5's Once Upon a Time, and the recent release of Snow White and the Huntsman (Sanders, 2012), to name but a few.  Moreover, according to HH – who was my very brilliant dissertation supervisor – there's loads of research being carried out on ageing, and it just so happens that the Arts and Humanities Research Council (AHRC) – who I'm banking on for funding – are looking for people to research 'New Dynamics of Ageing'.  Um, yay.  If I ever get to writing a proposal, I will play on this muchly. 

By 'Other', I mean the process of 'us' versus 'them'; primarily associated with Said's 1978 book, Orientalism, where the creation of a society:

'[...] whether Orient or Occident, France or Britain… involves establishing opposites and otherness whose actuality is always subject to the continuous interpretation and reinterpretation of their differences from us‘. (1995:332)

My PhD thesis will [hopefully] be on a much smaller scale than continental politics, and the idea of the 'Other' will instead be used twofold.  First, as a kind of play on words; not the heroin, the other one, and also Other with a capital O; the women that offer something different, oppose the 'norm', aren't seen as 'us'.  This may be cos they aren't beautiful, aren't married, are childless or infertile, etc.  Basically, anything that differentiates these women, such as Ursula, Maleficant, The Wicked Stepmother, from what we – us – deem socially acceptable, or traditionally conventional. 

By 'Monstrous Femininity', I'm of course referring to the brilliant Barbara Creed's The Monstrous-Feminine: Film, Feminism, Psychoanalysis, which I haven't actually read yet, but I'm sure it's amazing.  According to the blurb, The Monstrous Feminine addresses the way that female monstrosity nearly always shares a bed with issues of fertility and mothering – ooo, rhymes with Othering – think the alien in Alien (Scott, 1979).  So, like, all the baddies mentioned above don't have biological children, and seem to exist purely to make the younger, hotter, more fertile protagonists' lives a misery. Wait, this is sounding all too close to home... Anyways, I haven't even begun to address the question of why these women are portrayed in this way; though I have touched on it very briefly in my review of Snow White and the Huntsman.  Maybe it's jealousy, or bitterness, over all the privileges Third Wavers have over the Firsties, or maybe society – us, again – deem older women as useless, due to their inability to reproduce and, cos they're so unattractive, they must be cast aside, to go live in caves.  Again, not my views.  Who knows; it's probably a combo of all those factors, plus a bunch more.  Only time, and a whole lotta work, will tell.  Although, if anyone does have an answer, please share!  I'm not so attached to the idea of giving up my life [and sanity] to research this baby, that I wouldn't welcome any input. 

Next, cue a big load of post-feminist argument – which I actually love picking apart – about the body beautiful, women doing it for themselves, Third Wave gals versus First Wave old cronies, and I have myself a very basic, yet not bad – even if I do say so myself – idea for a thesis.

That's where I'm at right now.  I've done no reading, since researching my MA, and have watched maybe a tenth of the films that I need to.  But I'm starting to think about it; progress.

KT xxx

PhD; Pretty huge Deal

For the past few weeks, I've been desperately – and I mean desperately – researching possible sources of funding for my future PhD, to no avail.  Yup, I've come up with a big fat zilch.  Now, I don't wanna mislead anyone, or put anyone off wanting to study further; I'm just going from my, admittedly limited, research.

There's the Arts and Humanities Research Council (AHRC), and the Economic and Social Research Council (ESRC), which are the big guys in terms of funding.  I was already very aware of the former, as the AHRC offers the University's Humanities department the very generous total of two or three PhD bursaries per year.  Fine.  Great.  It's only just recently hit me though, that there's a very good chance I won't get the AHRC; then what?  I mean, I'm using this year to research my thesis topic, and do all the legwork, before writing a [hopefully] well-planned, and well-constructed proposal, which is what the AHRC money rests on.  But there's the competition; people from across the country will be applying for places too, many of them a lot brighter than me, I'm sure.  So it's definitely not a done deal.

I do have some advantages; I've already been a student at this campus, so know the staff well, and have their support.  HH and The Legend have provided me with loads of guidance in terms of research, and how to organise myself, and have given a very strong impression that they'll help me through the proposal-writing process.  They've been brilliant actually, and have totally made me believe that I can do this thang.  Providing I get funding. 

I'm working in a Film museum, cataloguing the Disney archive.  Considering my thesis topic is going to be set in the world of Disney – more on that in my next post – I couldn't really be in a better place, as I'm surrounded by magazines containing film reviews, interviews with animators, promotional material and so on.  Boss has basically given me free rein, saying that if there is anything I want to look at while I'm there, all I need do is ask.  A vast collection of archived secondary research at my fingertips; check.

I have a year to prepare – well, eight months now – but it's a lot longer, and more relaxed, than coming straight out of a Masters, which is the case for a lot of students.  In a way, I kind of wish I had gone straight on, without taking this year out, just to get it over and done with; I'd be nearly at the end of my first year by now.  Then I remember what a mess I was in the last year, how stressful I found studying the MA and writing a dissertation, without the added pressure of writing a 3000-word proposal.  I did need this break, to clear my head; I know it sounds totally lame, and lazy, but it's been great not having to think about anything remotely academic for a few months.  It's what I needed.  Though, it's amazing how quickly you can forget how to write properly, and this blog, along with proof-reading my niece's undergraduate essays, has really helped to keep my slightly furry brain ticking over.

So, yes, in theory, I'm in a really good position, and am lucky to have a lot of extra support, resources and advice on tap.  I'm just concerned that I'm going through all this effort, doing all this work – not that I've done much yet, but I will – and getting myself worked up – yup, it has begun – only to be disappointed next year if I don't get funding.  I'm not one of these overly optimistic types that gets their hopes up, only to be constantly disappointed; I'm a spoonie after all, I'm used to being let down. 

I do really wanna do this, and sooner is obviously much better than later; if I get on the course next year, I won't graduate till I'm 30, and that's if I go full-time.  Both HH and The Legend have, quite strongly, suggested I go part time, at least to start with, as I guess they can [vividly] remember what a nightmare I was last year.  They're probably right, and I can't describe how amazing it feels to hear how much they care, but that means I won't graduate until I'm at least 33… Looking at it written down like that, it doesn't seem like much difference, but it is really and, apart from anything else, my parents – both in their 70s – aren't getting any younger, and three years might make quite a big difference to them.  I want them to see me graduate, after all.

On the other hand, I'm doing a PhD for me, not for anyone else, thus I should only be running to my timeline of needs.  Even then, getting it finished in three years has its advantages too; I'll be much more employable by the age of 30, and might end up with a career lecturing or researching for the next 20 or 30 years. 

I'm less likely to be affected by a change in support staff, whether that be supervisors, note-takers, or personal carers at home, in three years than I am in six.  Course, people may leave due to illness, babies, new jobs etc during my three years of studying, but it's likely I'll experience less upheaval in a shorter space of time, which is something I need to think about.   I do get too attached to people, I know that, and I gotta stop doing it.  The Wife's called me on it before, and she is right; she's always right but, in my defence, when you need to trust someone to look after your most basic needs, and have to share your [sometimes quite personal] history with that person, you can't help but become attached.  Well, I can't, and I've really gotta stop it.  It's not really just the attachment issue, though that's a big part of it, it's having to explain my needs to someone new, over and over again.  To be honest, I'm getting used to it, now I have carers in at home, so maybe this isn't such a big deal.  I would be disappointed though if, for instance, I got halfway through a PhD and my supervisor – most likely to be HH or The Legend, due to my topic – left, because they know me and my 'issues', I trust them, and I can talk to them.

Anyway, the whole part-time/full-time debate is something that's going to be ongoing for a while, and may not be resolved till I start the course, if then.  That is the least of my worries, really – so why the hell am I fretting about it now??! – and my main problem is funding.

As I said, there's the AHRC, which covers PhDs and research projects in humanities, which Film falls into.  The ESRC covers economic, business and social projects, so I wouldn't qualify for one of their grants, but a lot of their areas of research coincide with those of the AHRC, thus it's good to at least be aware of them.  Failing these guys, there really is very little else in terms of funding opportunities for PhD, and nothing out there specifically for spoonies wanting to go down this path.  I'm sure there are thousands of institutions and organisations that would offer bursaries for particular research projects, but these are usually offered to one person at a time and, in my experience, are largely in the fields of medicine, science, business and sociology. 

I have looked up so many charities over the past two years – I tried to get funding for my MA – that I've lost count of how many 'no's' I've received.  I'm not saying that because I'm disabled I should automatically get funding, but it all just seems to stop at PhD level, for everyone, not just spoonies.  The Prince's Trust, for example, which is all for helping young people get into education, won't fund university course fees, at any level, which, to me, seems a tad fucked.  I even wrote to Disney, to ask whether they had any funding schemes or initiatives, only to be directed to a page on their site that stated that they are not "able to support personal appeals on behalf of individual people, including scholarships, challenges or overseas volunteering".  So that was that.

I know that no charity is going to give me the whole £14.400 – it's gone up, great – to cover the course fees, but no one seems to be interested in offering me anything, which is pretty depressing really.  I mean, as a spoonie, I have no delusions of grandeur, and completely understand that I'm much less employable than an able-bodied person, and undoubtedly more expensive, due to sick pay, extra equipment, and the need for a personal assistant.  I also know that I could probably only work part-time, and may find it difficult to travel on occasions, because of ill-health, or issues with care.  I get all that.  But what I don't understand is that I, along with many other spoonies out there, am trying to make myself more employable, and more valuable "to society", by furthering my education to this level, while in turn researching something that may prove useful to others, yet there doesn't seem to be any financial support or imperative to do so.  Considering one of the main issues at the moment is unemployability, you'd think the government, or someone, would say:

'Hey, well done for wanting to achieve and better yourself, when life is pretty tough for you, and ultimately give back to a society that hasn't done a whole lot for you, here's £500'

Is it me?  Am I wrong; is there anything out there that I don't know about?  If so, please, please let me know, because anything would be a bonus.

KT xxx

Trapped

Bank holidays suck, don't they? I find them so boring, and there's never anything to watch on TV either. It wasn't helped this weekend just gone that mother went out for the day on both Saturday and Monday, leaving me [with father] to amuse myself. Not easy.

I don't begrudge her going out at all; she definitely needs some space away from me, and vice versa. But I do find it difficult when I'm effectively confined to my room for practically a whole weekend. As mother is still my main carer, and the only one able to move me, if she goes out first thing in the morning I have to stay in bed till she comes back; otherwise if I got into my chair I'd be there for hours, which I couldn't do. In an ideal world, I'd have a hoist set up, so that other carers could come in and help me out but this is yet to be the case.

I know I shouldn't complain cos, compared to some, I have it relatively easy. I mean, I'm not in constant pain, I have the support of my parents, particularly my mother, who does everything for me, including driving around the countryside, and I have a lot of friends. Maybe I'm just a bit narky because I couldn't do what I wanted to do at al this weekend; it wasn't about me. Not that I had any plans, but the fact I couldn't make any even if I wanted to was quite a depressing (?) thought. I think it's just times like this remind me how limited I am, and how dependent I am on other people. I can't go anywhere without okay-ing it with my mother, who I might be relying on to drive me, or SB, my enabler, who may well have plans of her own. Even if I can go out with SB, I can only do that at a time that's convenient with my parents, as we only have one car. My car.

I guess I feel trapped by my disability; not a new sensation, but one that I try to forget about, and get over as much as I can. I've talked about freedom on here before, or lack of it, and it really is, for me anyway, the worst thing about being a spoonie. I don't really mind being disabled from any other perspective, it's never bothered me that I can't walk, ride a bike etc etc, though I'd much rather not have Brittle Bone Disease. But it is not really stop me doing anything major, like getting an education, having good friends and so on. I suppose maybe I'm being a bit glass half full, as I know I'm going to find it difficult to find a job, and the whole relationship thing is a total nonstarter.  What I'm trying to say is, I never, ever, think 'I wish I wasn't disabled'. Ever. Maybe when I was younger; as a child watching everyone running around in the park, or fixing up sleepovers, yeah, but not now. Suppose eventually you get used to not having certain things, not being able to do certain activities, and there's no point missing something you've never had. Right?

No, the only thing that bothers me about being a spoonie is not having that freedom to say.' I'm going out, not sure when I'll be back'. Such a simple statement for the majority of non-spoonies, one that most people don't even think about. I do. A lot. I can never make plans on the spur of the moment; ring a friend in the evening and arrange to meet the following day for a shopping trip, pop out to the town, go for a walk on my own around the park. Dead simple things like that are what makes it difficult to be a spoonie, and when I’m left 'on my own’ it serves as a reminder - like I need it - of what I can't do. As I said, and as is obvious, there are many things I can't do, but I don't dwell on these, and I don't [think] I feel sorry for myself either. Similarly, nothing's gonna change either; it's impossible. Even when I have 24-hour care from people I pay, and have a car to myself, I'm still never gonna be able to do my own thing, or go out without making really tight, military plans.

Am I OK with that? No, not really, but there's nothing I can do about it, so stop moaning. I've just gotta focus on the things I can do and, for one thing, I thank my lucky stars every day that I'm at least of 'sound' mind… Well, kind of. I really don't know what I'd do if I couldn't hold a conversation, couldn't read or study. Then maybe I'd have something to moan about, which I didn't intend to do today. Obviously I don't have enough on my mind at the moment; need to start researching that PhD. I shall endeavour to not complain at all in my next post.

BW xxx

Source Unknown

I feel really sick.  Sorry, that's not the topic of today; I don't know what the topic of today actually is, but it's not that.  I just thought I'd state a [pretty boring and pointless, yet honest] fact, particularly if this post ends being short because of it.  Although, this post may well be very succinct anyway, on account of the fact I don't feel I have anything much to say… Figured I should write something, as it's been ages, and I don't want to get lazy, but then I don't believe in blogging for the sake of it either.  So I'll try to make this slightly interesting, for all our sakes.

I haven't achieved very much since my last post; I've spent most of my free time proof-reading my niece's BA dissertation, which has taken a fair few hours, though it was only 10,000 words.  Other than T, no one has ever asked me to proof read an essay before, and it's really hard.  I mean, I was taught the 'rules' of 'good' essay writing, as I'm sure a lot of people are, but it doesn't mean that these rules tally, or apply to all forms of academic writing.  Like, when I was at secondary school, the same one that T attended, I was never told not to write in the first person; arguably the most basic rule going, right?  I was sent off to Uni, to do a course on Journalism, ffs, with no idea how to write a decent essay. Yet, once I went into FE, after The Event, such rules were drummed into us, thank god and, I think [hope], my writing dramatically improved.  Course, just being at Uni, and having to write endless essays really does wonders for your skills, but I find it really interesting to see how differently students are taught the basics, if at all.  I mean, I was taught referencing until I could repeat the lessons in my sleep, yet the majority of my fellow university students had no idea what to do, which I believe is still the case for many new undergrads. 

I'm not saying I'm brilliantly clever, cos I'm definitely not, or that I've had the best education going, or that my way of writing is the right way, as I believe no matter how good you think you are, you can still learn from others, and improve yourself.  I'm just saying that there doesn't seem to be one umbrella system of rules for good academic writing, and it's really difficult when you move from one institution to another, or compare work from a variety of sources, to really know where you stand.  I hope the advice I gave T was helpful and, most importantly, correct, as I know how emotionally attached you can become to longer pieces of writing, and thus how difficult it can be to let others read, and potentially criticise, the work that you've put your heart and soul into.  It is a big responsibility to proof read for somebody; I don't think I really appreciated that until now, better go and thank Gloria again then!  My input was gratefully received by T though, and she did all the hard work, I merely edited, and added a few comments here and there. 

It was quite a privilege actually, that she trusted my judgement enough to let me help, but now I'm done – she's handing in today – I really should knuckle down and do some proper work for myself.  I'm supposed to be researching for my PhD, and really trying to pin down my corpus – what the hell I'm writing about – before putting together a proposal.  If I don't get the proposal bang on, then I won't stand any chance of getting a scholarship, and consequently won't be doing a PhD any time soon, so no pressure, and no half-hearted attempts.  I have to focus, grrrr – that's me being determined and driven, by the way.

Other than proof-reading, I haven't done a lot.  I've been out a bit with SB, my enabler, though that hasn't been completely smooth, as she cancelled on me last week, due to a bad back.  I don't begrudge anyone time off because of illness, and everyone deserves a holiday too, naturally, but SB has cancelled on me a fair few times since becoming my enabler, and it is more than a little concerning.  Before VW left, she promised to show SB the ropes, and give her a few practice runs on how to get me in and out the car safely and securely, yet SB postponed this arrangement a good four or five times before we got together.  It was in the back of my mind then, whether SB was taking this new role seriously as, although she's a carer anyway, maybe this job wouldn't be as important as her 'main' career.  I let it pass as, admittedly, I was desperate to make sure I wasn't left without an enabler, and the fact that I'd been 'allowed' two more hours a week, plus the increased flexibility meant that this was really too good an opportunity to miss.  Besides, when SB did begin her 'training' she was very competent and confident, and I already knew and got on well with her, so it made sense to carry on, rather than beginning the seemingly endless task of tracking down somebody else, who probably wouldn't be as flexible – because they wouldn't live right round the corner, or be free from 11 every weekday morning etc.  It seemed ideal to hire SB and, without sounding totally hard done by, it's not often that things seem to just work out like that for me; they generally take months, maybe even years of planning, and it's a stressful, exhausting nightmare.  So when things look doable, I try and go for them then and there, before the offer ends, so to speak.

It has worked out well, to some extent.  When we have been out, it's been really relaxed; we've organised everything between ourselves, and have had no real worries about when I must get home again; long as it fits in with SB's life, of course.  But, like I say, she has cancelled on me, a fair few times, if you include the initial false starts I mentioned earlier.  It does annoy me, though the times that she has let me down have never been that critical, as I've not had any real plans.  I'm waiting for that one.  I just assumed she was reliable – is anyone though, really? – and would take this job as seriously as her role as a carer.  Maybe she does really value this job, and I've asked her if she's still up for it, which she says she is, so perhaps it's just teething problems, or genuinely bad luck. 

I am gonna give her the benefit of the doubt, and see what happens; if she lets me down again, particularly if I've made important plans, then I'll definitely have to think differently.  The Wife'll probably kill me, because she told me to complain about SB's absences, but I really don't wanna lose this service.  It is just a service; I'm not attached to SB, like I was VW, so it's not the fact of losing her as a person that's the problem.  It's the fact that my family and I receive very little support as it is, which is entirely our own fault because we've always 'managed' on our own, without asking for help until recently.  Now, while I have a small amount of home care, almost as a supplement to mother – I'd genuinely accept more help, but my mother feels that, while she's here, and relatively able she should do the majority – I still have to kick and scream to get anything else.  My OT is worse than useless, and I've been waiting nearly three years for her to set me up with a hoist so that my carers are able to move me without my mother's assistance, only then can I really begin to think about 24 hour care.  It isn't fair that it should be this damn hard, and I'm getting upset now, so should probably take that as my cue to go, cos I refuse to feel sorry for myself.  That won't get me anywhere, whereas complaining and screaming blue murder might, so I'm going try the latter tactic, methinks.  Though, why should I have to??  Argh, going.

BW xxx