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.