Because I'm a Woman: the Enjoli Generation

(Warning: fever-induced rambling. Just saying.)

The late 70s-into-the-80s was a time of real cultural schizophrenia: women could work, make the money, have it all, and still have the time/energy to dab perfume behind their ears while slipping, braless, into a little white satiny number before flinging open the door when their men came home. Want proof? Watch this: http://www.youtube.com/watch?v=jA4DR4vEgrs. I was brought up on this stuff. It made no sense; no one could possibly do all of those things and still look happy and have her hair brushed. Or maybe I just suspected what I now know to be true: I didn't plan to have the energy or inclination to prance subserviently around a man after a day spent running the world. No thanks.

By the time I saw my first Enjoli commercial, I knew that pretty nearly everything I had ever been told about the way I looked and other people looked was a lie. There was a lot of this:

'Your insides matter more than your outsides.'
'Beautiful is as beautiful does.'
'How a woman treats other people is more important than how she looks.'
'A mother's first priority is taking care of her family, and if she can look nice too, that's fine.'

But it didn't quite ring true. What I saw, rather than heard, was that my mother would not leave the house without lipstick on, and that she spent at least an hour getting ready to go out before we went anywhere, and we were always running slightly late because she kept re-checking her hair, her makeup, her accessories. What I felt was that I was a resounding disappointment, reading as much as I did was weird, having a scientific/writerly disposition was even more horrifying, and what my mother had really wanted was a cheerleader with long ringlets. I loved her, and accepted that this was one of her blind spots, but it hurt like hell not to be seen as me, for me.

I had understood when I was much, much younger that feminism was about being equal, even though we didn't all look like Farrah Fawcett, and were not all married to the 6 Million Dollar Man (aka Lee Majors). I thought feminism was for all of us, that, as Julie Bindel says so eloquently in her piece in the New Statesman from 8/8/11, that "feminism has an ideology and a goal. It is not about personal liberty and freedom, but the emancipation from oppression and tyranny for ALL women, whatever our race or class." (See http://www.newstatesman.com/blogs/the-staggers/2011/08/fun-feminism-women-feminist for the whole article, and follow her on Twitter: @bindelj).

 I find, despite being enlightened, that I am also a bit disappointed that I didn't ever look even a little bit like Farrah, and never will, and now have a Dead Leg (and he is SO UNATTRACTIVE AND COOPERATIVE THAT I AM ASHAMED TO KNOW HIM.). I will admit that I have my shallow side. I am not, and will not ever be, what Bindel terms a 'fun feminist,' however, and will always be horrified by today's version of the Enjoli myth, aka the Reality TV Show, and the pornification of women that goes along with this. We were just starting to get some traction, and now all we talk about are Michelle Obama's arms. This needs to change, and it needs to change now. I suspect Farrah wanted to be more than a poster or a pair of boobs, and wish that she had been able to be as smart or driven or whatever she was, as she was.

There's No Armpit Hair Over or Under Here

Blondie of Transatlantic Blonde fame has issued a Call to Arms, as it were, for Feminist Friday. To shave or not to shave? THAT is quite a question. I started shaving under my arms many, many years ago when I had virtually no hair there anyway. I did it because, well, that's what my Mom did, and her sisters did, and most of the women and girls I knew or saw on TV or in magazines did. It seemed to me that it separated the women from the girls, and I was definitely aiming to be one of the women. I've never been very hairy, so it isn't very noticeable if I don't shave, but *I* notice. And I don't like the little black hair stubble-- reminds me of fly legs. Ugh. Just na-zasty.

Do I think shaving and the new Venus razor blades with 5 blades and 27 gel layers are part of some sort of patriarchal plot? Not really; marketing hype, certainly, and preying on our fear of ever being demonized as unfeminine. It is also an artificial de-naturalisation in the name of 'Beauty,' whoever she is. I don't see what purpose the hair serves in the first place-- it should be obvious to everyone that I've been through puberty, no? So any potential 'come hither, Caveman, I am now fertile and of age' signalling it might have done is pretty pointless. Will I carry on shaving? Yep. Will I defend the right of women Over There or Over Here or Anywhere to NOT shave? Yep.


(ten minutes later)
I can't resist adding a (revolting) visual, because I am stubbly and proud of it! Weak of stomach, look away now:

Process of Poetry

I am still editing. And it is difficult. I am still working on the critical component of my M Res, and compared to that, editing is a doddle. I don't know how to 'justify,' critically speaking, what I've written, or the ways in which I have written it. I am struggling to define my own personal ethic, in terms of writing, so that someone else can understand it, or at least have some sense of my process. But how can I explain something that I am only just beginning to trust and rely on myself? I know when I draft is 'done,' when I can't do any more to a piece of writing for the moment,  and I know when I am ready to work on it again, because my brain itches. Right now, my brain is so tired that the itching ain't happening. I have successfully titrated myself off of Pregabalin, which didn't work its promised magic on the pain, but I am not sleeping well, in part because I need to get writing done and I can't relax. I'll try to have a nap, and see if I can feel the itching in my head a bit more clearly after that.

Still No End, But Plenty of Gloom

Finishing off the critical component of my M Res is proving pretty challenging. I've put myself under pressure to complete it well ahead of time, and this simply isn't going to happen. I need sleep. My CRPS is screaming for more sleep, as is my arthritis, and I need a less chaotic household; we've been pretty full of musicians all weekend (see @martynclark's Twitter feed for more info.), and I feel like I've been a nanny, but without Mary Poppin's semi-magical powers, umbrella, and carpet bag. I'm going to London in a few days, and wanted this done before then, but my body and brain are simply not cooperating. Like a poem, an essay isn't something that can be forced out of my head onto a screen. I should know better.

Doom, Gloom, the End of a Project Looms

My M Res project is almost in its final form, and I am having trouble finishing it. I would think, if I were not me and was looking at me, or still me and floating around having some sort of out-of-body experience, that this  'critical component' would be the easy bit. The *hard* bit, theoretically, would be actually doing the creative writing component. Not so. Getting really stuck in to the analysis bit, in which I have to compare my own work to that of a lot of famous, competent, writerly types, is more difficult. Finding the mental energy and focus to do it is made more difficult by pain, fever, and all of the annoying antics a Dead Leg can get up to, but the real issue is lack of confidence.

Writer Me, Disabled Me, and Common Purpose

From the 6th-8th of July, I am going on the Frontrunner course run by Common Purpose . I think it is more than a little ironic that the Dead Leg and I are going anywhere near anything with 'runner' in the title...but maybe that is just my gallows bravado talking.

I got the rest of the bumph I need via email yesterday, all of the speaker and attendee bios, and I feel a bit nervous about the whole thing. I've recently begun to really embrace Writer Me again, and don't, despite presenting at 5 conferences in the last month, feel like I am fully confident, fully occupying that part of me. Frontrunner will present another challenge, one I struggle with at least as much as I struggled with acknowledging that I wanted to write "properly, like books and stuff," as my 8 year old says: trying to embrace Disabled Me.

All of me is affected by my disability, but I spend a lot of energy and time trying to keep it from affecting me. And it doesn't work. Going on the Frontrunner course is about trying to make the adjustments I need to make to lead as a disabled person, to advocate for myself as well as for patients and clients. I don't have any hangups about advocating for them; it is me, and people like me, the Spoonies with hidden disabilities, I need to be better at advocating for. So the Dead Leg, my walking stick and/or crutches, and I are off to London to meet a lot of people. So here's the bio I sent:

     I wrote my first poem when I was 7, shortly after ensuring (or so I thought) that my youngest brother’s adoption proceeded smoothly, and prior to performing open-heart surgery on a snapping turtle crushed in an MVA. He (I think he was a he) didn’t last long. I have failed, to some extent, to live up to the early promise I demonstrated.
I ran track and cross-country before discovering I had arthritis. I cooked a lot of cheesecakes before perfecting that black art. I lived all over the US before falling in love, marrying, and moving to Italy, briefly, before settling in Scotland. I have two fantastic sons who ensure that I don’t get too full of myself, and humiliate me regularly at cricket. I trained and work as a Speech and Language therapist, write, edit, stupidly agree to organise and attend conferences, and write more. I am incubating 3 poetry collections, some short fiction, and a novel (please don’t mention the novel to my supervisor, as he quite rightly assumes I am taking on too much already). I am learning to play the guitar—badly, as it turns out. I love feeding people.



(The writing prompt  Sleep Is For the Weak gave me (well, me and the Internet, but you know what I mean) is to choose something that represents me, some article of clothing, an accessory, and write about that. I hope it is obvious I chose crutches and other accoutrements of Crippledom.)

Sports Day, Or Why We All Need to Raise Feminist Kids

I was a parent helper at Sports Day today. We were in the amazing Kelvin Hall, on a *real* track with the *real* rubbery smell that so vividly reminds me of the days when I could run around tracks and across fields and anywhere my legs wanted to go. I watched the kids struggle with one of what appears to me to be the biggest dilemmas they all face: how to compete without anger, fear, or being consumed by your own insecurities. Boys get told that they need to be the fastest and the bravest and score the most goals. Girls still, unfortunately, get told in very insidious, hard-to-challenge ways, that they should be the best they can be as long as it doesn't interfere with boys being the best. They should, "when trying hard to be their best," be just "a little less," to paraphrase Madonna.

I watched as girls subtly discouraged each other, unconsciously letting the boys 'win'. Not that anyone was allowed to win, of course, since Sports Day is an anti-competitive affair in which no one is allowed to win, because that might discourage those who try and fail. The real world isn't like that, and I think it is a disastrous failure, as policies go. My sons are competitive, and the only way they will learn to manage their competitiveness is to be competitive and to compete. They have to learn that sometimes they'll win, and sometimes they won't, and that we aren't all equally good at everything.

One girl wasn't discouraged. She was quiet, but was still clearly part of one of the more powerful cliques in operation in P6 and P7. She tried hard and was good at the javelin throw, the long jump, and many other things. But when I saw her running, she was awe-inspiring; I wanted to cry(for her, and in some way, for me). I remember that feeling, the joy of knowing you are not just good at something, but spectacular at it. I remember flying over hills and around tracks, feeling as though I would never have to stop unless I wanted to stop.

It was like turning on a light; her sureness was a beacon, and it pulled the other girls on her relay along with her. I wanted to tell her so many things afterwards. I wanted to say,

'Don't slow down for people who don't make you feel the same way you feel when you run.'
'Don't ever let anyone tell you that running or being athletic means you are less female or girly or special.'
'Don't ever forget the feeling of flying, and what it means to know and to understand your body and all that it is capable of.'
'Be you, all of you, all the time, just as you are you when you run.'

I didn't say most of those things, apart from the last one. I didn't want to frighten her off. I remember what it is like to be all legs, half-tamed, and half-comfortable in your own skin. I told my sons instead, and listened as they talked about her, and all of the things she's good at, without jealousy or fear. I thought that I might be managing to raise feminists after all, and so might some other Mom on the Southside.

Nursing Home Residents Face Uncertain Futures

Not completely uncertain, I suppose; they know they aren't going to have a lot of choice about what  they eat and when, or the music getting played in the dining room, or who sits next to them at lunch....So much is decided for and about nursing home residents, and they don't often have much of a say in how things are run.


Southern Cross Healthcare announced that it is planning to cut 3000 jobs from its 44,000-strong workforce. Please see the Guardian article below for a concise summary of Southern Cross' current position and plans.


http://tinyurl.com/69s5hk9

Two Conferences Down, Three to Go

On Friday, I presented a paper at Write Now, a conference I helped to organize and did the publicity for (Tweeting, blogging, wheedling, home-paging). Today I was supposed to have presented a poster about my current research project. I say 'supposed to,' because I gave up on the conference at lunch-time.

I felt I had fulfilled my brief. I was asked to make a poster that was accessible, that minimized jargon, that could be understood by anyone who looked at it. The prof who worked with all of us (more than 100 grad students from across the university) for two days last month, encouraging and challenging us, felt I had done just that.  He told me he loved it, and loved the fact that it was visual, that it was emotive, and that I made explicit links between what I do as a clinician with what I do was a writer. I put two references on it. I didn't put my primary supervisor's name on it (the project is mine, not his, and he wouldn't have wanted me to do that). I tried to make the poster about what I do. And I tried to feel less nervous when I got to the conference this morning and saw how few people had left their posters the way they were when we 'completed' them. References everywhere, masses of text, prof's names, long titles-- in short, everything we'd been told to remove-- on most of the posters.

Today, I had nowhere to sit, despite having been promised that there would be accommodations made so that I could participate fully. I had to go up and down stairs. I had to stand, and stand, and stand until I couldn't stand it any more. And when I came back from perching desperately on a radiator for a few minutes so that I could get the Dead Leg to SHUT UP ALREADY with demanding codeine and Versatis patches and some bed-rest, I found 3 students I didn't know from Chemical Engineering looking at the poster. I got ready to meet yet *more* people I felt too sore and tired to meet. I heard one of them say, as they all pointed and laughed at the poster, "Any time you see a loop on a diagram, you know you are looking at a pile of pointless shite...only a retard would have hung this shit up. Unbelievable." I found out that I was not just a cripp, but a 'retard' as well. I asked them to come back later to make fun of it, so that the judge (who had just arrived, clipboard in hand) could ask me about it. One of them pointed at my stick, laughing again as he walked off. I don't know which posters won. I took mine home hours ago.

I am hoping that the next 3 events in my socio-academic calendar are more accommodating and less humiliating.

Nursing Homes and Care Homes: We Need Them

In my pre-cripp working life (and for part of my post-disability working life), I went into a lot of group homes, day centres, and nursing homes as a Community Speech and Language Therapist. I saw a lot of truly awful things, but one of the most awful for me was always the lack of training staff were given, and the lack of respect and care they were repeatedly shown. Without a lot of training and support, no member of staff could cope with the demands of caring for someone with severe learning disabilities, mental health problems, and autism; even the best-prepared staff and visiting professionals like me struggled. I don't want to imply that I in any way condone what happened in Winterburn and Castlebeck: I don't. I will never condone it. I will continue to rail and to fight against it. I will continue to lie awake at night with my worries about vulnerable people impotently churning around in my head. I have reported more care environments more times than I care to remember to social work offices, to regulatory bodies, to the police... the list is endless. I was worn out with whistle-blowing, and it never seemed to change anything. There are other nursing homes that operate very close to the margins, financially speaking, and 'underperform,' and threaten entire chains of nursing homes with closure because owners and shareholders are dissatisfied with the return on their investment. There will be other stories like this; in fact, there are already, and we just haven't heard them. We've attempted to outsource compassion and caring, and the people in Winterburn are the casualties of our naivete and detachment.

Part of the cure has to be that staff are given training and a wage that lets them stick their heads above the poverty line. Another part is that there must be less hand-wringing and more accountability, but the regulatory bodies cannot manage that monumental task alone and for us. The disabled people abused in Winterburn are us; the people living in nursing homes on the brink of closure are us. They matter, as all human beings, regardless of age or frailty or disability or toileting needs matter.

Spoonie or Loony: Not Much of a Choice, Is It?

There are a lot of "spoonie" /"spoony" tweets flying up and down my timeline on Twitter these days. A 'spoonie' is "someone who has a debilitating, painful, chronic condition but doesn't look sick" (see http://tagdef.com/spoonie). The origin, according to tagdef.com, of the term is the aptly-named Christine Miserandino's "The Spoon Theory". Which is, apparently, what I am. It lacks the visceral, humiliating punch of 'benefit scrounger,' and I am about to become one of those again too, after almost a year spent trying to understand why someone, somewhere decided I wasn't disabled (enough). We spoonies have a difficult choice to make every day: pain relief (and feeling like a junkie failure) and sanity or none and feeling on edge and slightly insane, just trying to make it to the end of the day without weeping in public or killing someone. Today I've gone for pain relief, and I feel slightly guilty, but my shoulders aren't hunched above my ears and I can  stand to stand up.

Rehumanizing

I spent part of today (far too large a part, I might add) in a room full of uncomfortable chairs. I sat below a TV, but couldn't change the channel when 'Jeremy Kyle' came on (the remote has been lost for a considerable period of time). I had to wear my bathrobe over a medical gown, and some paper underwear, and so did all of the other strangers sitting in the room with me. This was my pre-day surgery 'patient experience'. As someone who has spent a lot of time over the last 15 years to try to make being a patient a little bit less dehumanizing for my patients. I found being patient when I was expected to just get in line and bleet! and BAAAAAAAA right along with everyone else infuriating. The staff were fantastic, supportive, and demonstrated respect for me and for each other. The environment leached all of that away. I imagined how scared I would be if I couldn't let people know I was uncomfortable, how angry I would be if I couldn't bitch about the paper pants and have someone understand me. We need to change things, but how can we, when most people don't see the conveyor belt or some way for all of us to get off of the damn thing? People are not products; real human experience can't be manufactured.

Ode to Naproxen Sodium

I feel as though my life should be sponsored by Naproxen Sodium. Between an arthritis flare and the usual Dead Leg/ CRPS nonsense,  I am in excruciating pain and am so irritable even I think I'm being snarky. I am also extremely too sleep-deprived, and am losing my command of the English language, so if you were actually expecting an ode, you are going to be SERIOUSLY disappointed. This is all I've got, and I think it is probably more of a paean to coffee.

Naproxen Sodium

sounds so much more exciting 

than it is,

so much more important.

Caffeine is marvellous,

an antidote to exhaustion,

though the coffee that carries it

competes with Naproxen Sodium

for my stomach lining's attention.

See? Complete shite.

What's In A Word?

The first time I remember thinking of myself as a 'feminist,' and not just a fiercely competitive tomboy with a "terrible attitude," to cite an expert on young women who insisted on doing things only boys were supposed to be doing (Sr. Eleanor, 3rd September, 1979), I was 11. I was playing on a guys' soccer team (there wasn't one for girls), and the goalie for the opposing team insisted on referring to me as 'Lady,' despite the fact that our coach had told him my name 27 times. The goalie sneeringly asked if I thought I was a feminist. I thought about overhearing men I knew referring to women as 'feminists' and 'bra-burners'. I decided to say 'yes' shortly before kicking the ball hard enough to take his head off. He missed (or lost his nerve); I scored. I felt awful. Everyone was shouting and celebrating around me. I had lost my temper; I didn't see anything worth getting excited about, and it felt almost as if I hadn't scored at all. Something about it didn't seem fair; I think now that what I felt was a very strong sense that I had let myself down, and let all of us bra-burners down. I still wonder if I did.

Thankful, Or At Least I Will Be

So. The 3 Fates, none of them toothless, sadly, have decided that I am, in fact, disabled enough to have the higher rate of the mobility component DLA (again). A year of wrangling culminated in  I feel sort of numb; it isn't exactly something to celebrate, is it, having official acknowledgment that I am f*$%*d. F*$%*d good and proper, like so many of my patients. At least I can speak, and write, and make myself heard, and I had loads of moral support (including Rolos being telepathically beamed at me by @lumpinthethroat when I couldn't find any). I have spent the last 11 years advocating for people in my role as an SLT; now, I need to figure out how best to do it in a way that doesn't involve 4 hours of commuting and beating the hell out of myself.

Oh, and I did manage one other tiny little thing today: my first round of edits is done, and the MS sent off, so that my primary supervisor can have a read through all of the poems and short stories in my M Res collection. If anyone has any ideas about how a poet goes about training as an advocate, or doing whatever I need to do to help other people in the same crappy sinking boat, I am all ears.

All I Can Say

GAH. Yuk. Barf. Hurl. Vomit.  I feel sick. Shaky hands. Shakier legs, especially the Dead Leg. 3 people I have never met, who really don't want to meet or see me or acknowledge that I exist, will make a decision this afternoon that feels as though it will change my whole life. Even to my own ears, that sounds a bit melodramatic. No DLA, no Motability car. No DLA, no Blue Badge. No Blue Badge, no bus pass. No Blue Badge, no renewal of my Disabled rail card. One little freedom-killing thing follows on from another. Walking stick it was, crutches it is, crutches it may be. And to top it all off, my face has erupted in pimples. Great. Now I'm a pubescent-looking 44 year old who walks like a pirate.

Not Disabled Enough, But Not Able Enough Either

Wondering why, if it is against the 'rules' to consider where I work, or the sort of work I do, when determining whether I meet the eligibility criteria for the higher rate of Mobility Allowance, the fact that I am working, and, in the course of working, cover wards in hospitals and nursing homes, has been cited as proof that I am not disabled enough?

I feel as though I am being punished for refusing to fit the stereotype of the disabled benefit scrounger. Working seems to somehow go against me. I used my DLA money to lease a car so that I could get to work and go on my rounds every day at work. Apparently the DWP would be happier offering largesse to the tune of a princely (technically 'princessly'-- just look at the gender bias inherent in the English language!) 189 pounds a month (or whatever it is...the appeal has been going on so long I don't even remember what I was getting, exactly) if I was staying indoors and out of sight.

Neon Orange, Putrescent Green

I am sorting through a *ginormous* pile of papers (171 pages and counting) relating to my DLA Appeal and my Tribunal hearing on Thursday. The documents from the DLA office are all printed on a vaguely grey, dirty-looking paper that seems to absorb whatever pen I use on it to make notes. The paper is dingy. I feel dingy doing this, grubbing for money to buy freedom with. My highlighter pens are the only bright things around me, and they are blindingly bright: should I go for Insane Orange or Viral Green? And can I really remember all of the stuff I need to ask about/emphasize? AND will the Dead Leg stay quiescent enough for me to think straight?

Gimperella Tries to Dress for the Ball

The second most offensive thing about my crutches is the colour.  The most offensive thing is needing them, of course, needing the relief from pain and exhaustion they (might) offer.  I need the crutches, but I don't know what to do with them, so I'll leave them in the back of the car I can't really drive. Hospital grey, with yellowy-beige-ish undertones, is going to be very difficult to accessorise. I can't believe I'm worrying about what to wear to my DLA Tribunal; how do I look disabled enough? What does 'disabled enough' look like? If I'm too well-dressed, too clean, I'll look like a scrounger bilking the system. Not well-dressed enough, I'll look like I don't take the Tribunal thing seriously. I need armour, preferably in an inoffensive floral print.