There is a lot going on for me at the moment and I can hardly dare whisper that much of it seems positive. Not only is the novel ‘Fancy Nancy’ Out There now, at least being read by someone, but I managed to submit a radio play to the BBC and tie up several loose ends on several creative possibilities.
I'm immersed now in DadaFest preparations. There's the burlesque event, I am a roving poet and I am also in bed at the John and Yoko Bed-In celebration. I intend to do a piece called Bed Ridden - say each word slowly and precisely, it creates a whole new emphasis.
As the theme is world peace and non-violent action, I am intrigued to think about the powerful women who have spent time in bed through impairment of all kinds, creating alternative interpretations of action and change. I hope to make the piece entertaining and subversive while keeping to the remit.
I've also finished my creative response to the recent focus groups run by the Royal College of Physicians held at Shape. I became fascinated with the story of Sarah Hawkes, an 11 year old who experienced an injury that caused her body to bend into a painful twisted horseshoe shape by the age of 14.
A early 19th century doctor took up her case and straightened her out with physio and stretching... but history neither records her voice directly, or what tells us what happened to her post 'cure'. I've gone on a journey with this, seeing parallels to my own life at that age, and written The Imaginary Ballad of Sarah Hawkes which exists in both a folk song idiom, and a rap. I intend to discover more about Sarah and have longer term hopes to make a documentary about my efforts to give her the life outside of the medical profession which history has cruelly denied her.
Now I reckon I should pause for breath and fuss my cat who keeps sitting in front of the pc monitor. Is this a hyperactive phase? Will I be cautioned by my MH team - as I often am - to slooooow down? After all that's happened, that simply will not compute as I enjoy riding the wave.
Amid painful chaos and the world falling in I did a wonderful if tortuous thing. My thoughts still go through a cruel mangle and bits of me come out the other side in jagged fragments. A lot still hangs in a rather precarious balance – housing benefit issues, the benefit trap, lack of regular work, poor mental and physical health.
But then….? I don’t know whether it’s the meds – which were increased recently. I am less raw, but also less motivated and removed. I’m in the famous fog, slow in the anti-depressant dirge of non-emotion. At least the blunting of anxiety gives me a rest – you know, from simply feeling too much.
Maybe the task in hand needed that. My rational self had to push through, my humour had to kick me up the arse and say get this thing done girl!
The classic situation is that of having a novel I could not let go of. One therapist (a very nice one) suggested over some years I was frightened of success as much as failure. It was deep in me. What happens when you say ‘the novel is complete’ and you don’t have it there burning a weighty purpose into your being?
Well, the novel IS complete. It made it as a whole entity at 4am on Oct 10th 2010. Only a nine year journey of rewrites, of hiding in cupboards and on different PCs. ‘Fancy Nancy’ is ready to show her brazen face to the world whether it’s ready or not. I need an agent and a publisher – any ideas or pointers welcome! I will work on it, when motivation can be sustained.
Things felt different after this scary task. I’m hoping I can sustain it, because as the godly Leonard Cohen says in Anthem, ‘there is a crack in everything, that's how the light gets in.’ This completion filled me with light, and I’d been missing that.Terribly.
I survived the big 5-0 drama remarkably intact and with a beautiful party organised by lovely friends. I am not so sure about the outcome of my traumas with my council as detailed desperately in my last blog. It seems to move forward, and some help has been given, but then it gets rather sticky and slows down again. One pushes on as one must. I attempt to look forward and on that note I must thank you all for the encouraging comments left on my last blog, which made me feel less isolated.
Optimism is not always easy of course now I really am in Survivor mode. Surviving doesn't remotely begin to describe what I feel I'm being put through by the medical profession. I have been flung from one mental health service to another-and it truly seems about passing the buck, or should I say the pounds, onto somewhere else. Such is the lot of most disabled people, clearly.
But as I get used to the current situation and my new BPD label, my life see-saws accordingly. I guess this is it - this is me and always has been! I started to write a one-woman show last year and provisionally called it Finding the Darkness and Light. Yup, that says it all. One day it's all gloom under the duvet, the next impossible exhilaration at writing some new pieces. I should be used to it at my age I know, but I not and it is often very exhausting. The meds don't seem to be doing much accept giving me tinnitus.... oh well, big surprise.
Yet I've been working a little more and how happy this makes me. It's what I do, it's me being me. I did a short but well received set at Liberty (which was one of the best ever this year) and on Friday 10th September I am doing a 25 minute spoken word set in The Rooms, St Leonards, East Sussex, as part of the Hastings and St Leonards Heritage Open Days event. Please come if you can, there's Open Mic slots and the venue is fully accessible.
You will see me at my happiest - here's hoping and we'll all have a jolly good time.
It leaves me incredulous every passing day now, as the big event hurtles closer. That is, on 16 August I am 50. Oh my. It's as unreal as the recent diagnosis of Borderline Personality Disorder. I'm 50 and disordered? Maybe I'll simply be proud. I know I can pass as younger if I want. Vain, moi? Always.... As for BPD - that's me. Extreme and emotional and a happy drama queen. Mostly.
Apparently my death was predicted to be at around the age of 20 years (and almost occurred at 10 years) from my physical impairment, and the BPD is likely to have been swinging me on extremes since adolescence, so getting this far must be something of an achievement. That thing of surviving which counts as something.
Yet as I sit here in London listening to the drizzle - what consumes me most is how, as a creative practitioner, I continue to battle the system; that faceless monster who is harnessed to condemn those of us who dare to whisper, shout, step and wheel outside the box.
I am embroiled in an ongoing issue with Islington Council concerning housing benefit and council tax. I've made mistakes as I've struggled through their paperwork, forms and repetitive requirements, I will never deny this. Yet it seems to me they simply don't have a system that allows for someone like me to work and be self employed; to be designated 'severely disabled'; someone who is entitled to working tax credits and who overall earns very little as often happens to creatives. Someone who is on direct payments yet can create work...
I am quite convinced they would prefer me to give up work and make their lives easier. This is the reality behind the sombre statements politicians make about assisting 'the disabled' into work. They don't want it really, only on their own terms and if it's easy and convenient, and because it sounds good. It strikes me as farcical in a time of recession and spending cuts looming everywhere that they may indeed force me back on benefits.
I can't begin to describe the 10 months of farcical to-ing and fro-ing to benefit departments, debt officers, the great volumes of paperwork, of insensitive and even aggressive letters and responses to me. Kafka couldn't take it!
I've lost work and opportunities as the effects crushed my physical and mental health. I've been diagnosed with a heart condition and two 'breakdowns' in this time. I live hand to mouth on work that I've done in the past and the small things I can manage and develop now.
But I am Penny and somehow I will find resilience past the big 5-0. I will keep naming and shaming as far as I can go. And of course I never stop working. I am a writer, a weaver of words, a teller of tales in as many forms as the world will let me.
Tell me if you've been there too!
It's a very strange place I find myself in this week. An uncertain placing in the world. They, the faceless, have given me hints of another diagnosis - borderline personality disorder. I've 'probably' had it all my life. Not sure what to think, but then that thinking stuff is all a bit scrambled right now anyhow.
My wise therapist of 12 years on and off (sadly not able to guide me officially now) is urging me to resist identifying deeply with any label, but using it if it helps with finding support. The GP meanwhile, infers I am a hopeless case anyhow and too fucked up physically and mentally for them to do little but cast me aside as an inconvenience who doesn't fit in a neat and comprehensible box.
I cried a lot, swore a lot and he told me not to use expletives.... fuck that. I think I'm deemed a vulnerable adult, as I have 24-7 PAs. Yet the shrink team shoved me around hither thither and use my PAs as a stop gap. I simply don't know what next.
Meanwhile out attempting to interface with life and my Kev. Did some filming in Hastings and am editing various films to be shown later this year. We recently went to see the Anthony Gormley installation, 'Critical Mass' on the roof of the very beautiful 30s masterpiece, the De La Warr Pavillion in Bexhill on Sea.
My PA Sally who is a visual artist about to return to Goldsmith's for her MA, told me about direct light. Viewing the statues, lumps of unforgiving darkness, I was struck by their male blandness and helpless uniformity. But against that light, the sighing sea and the big open sky it was certainly a memorable experience.
I was calm in the lovely rich light for awhile and I know one thing. I am still, even up against any intensity of beingness, glad I am me.
I've been away. Not sure where. Wandering inside my head I suppose. Best to save details of that for another day.
I'm trying to come to terms with 'major depressive illness'. That's the label now, more are coming. I want to pour it into creativity. I can't help myself......
My short film is being shown this Sunday June 27th at the Islington Film Festival, Holloway Odeon. Do come... it helps and it's appreciated. I know it's a good thing, though I feel a bit distant from it...
Who has some guidance? How to work and not crack into pieces, and keep yourself there somehow.
Super fast blog!
I am manic, manic, manic, today and feeling like the whole world, or maybe dao world at least should come and see me do my spoken word stuff as a featured act, next Wedsnesday.
It will be a grand evening of words and thoughts, upbeat, slowbeat and everything in between.
It's for Jawdance, an Apples and Snakes event and the details are:
35-37 Bethnal Green Road
London E1 6LA
and here's there link to Jawdance on Facebook
Hope to see loads of you there, do come and say hello.
This is an attempt at a fast blog, haha. I can be pithy when I want. Poetry and film demand that especially. Tight precision I mean.
So right now I am fighting as per, and feeling like Drowning not Waving (see Stevie Smith poem) but we have to pootle on, don't we? I fear there'll be more Prozac soon, but sometimes it helps. I'm all over the place and it gets messy, so we'll see.
A performance next Weds, more on that soon. I'm booked for a featured slot, hurray!
I am working on the film for a competition but scheduling is tough when I can't think straight.
I desperately need a male actor, who can at least pass as non-disabled (it's needed for the context of the piece).
You'd play Dr Nazy, a right wing horror of a GP. It's short and it's dark comedy. Come on, get in touch. Reasonable travel expenses paid and you get a DVD. Also to appear alongside Sophie Partridge who is a FAB actor.
Ok back to work and battle. I think I'd look good in armour, don't you?
At last I've written a film script and I'd really like to get some good actors for this 5 min short, which is for a competition.
Naturally, this is an EXTREME micro, micro budget. It's me doing everything on my Sony DV Cam. I can feed and water actors and pay very basic travel out of my own pocket as a thanks. And give a DVD at the end.
The short film 'Diary for Lawrence' was chosen for a showing by Shape at an event in Wimbledon recently. I also made it to the shortlist of the She Writes women script writers scheme.
I need to film it within the next 2-3 weeks hopefully, but I will be scheduling it quite tightly, so wouldn't really need anyone for more than an hour or so.
If disabled actors play the Drs they have to be able to 'pass' as non-disabled - but happy to use non-disabled actors in this context. Will do very brief auditions if I get a lot of offers.
Sophie Partridge will play Jackie.
Please email me via email address: pennylion[at]hotmail.co.uk
Thanks for your help Penny P.
This is going to be a quick blog. I hope, I intend. I shrugged off the suit of blues, for a bit, as the sun appeared. The Up has to come, doesn't it?.
I want to mention now that I am performing on 21 April at Rich Mix, in Shoreditch, at Jawdance - an Apples and Snakes event. I've been booked as one of the featured performance poets, so PLEASE put in your diaries and come along. Likely to be debuting new material, with the ever magnificent Jo Cox.
These events are fabulous and I'm chuffed to be performing a longer slot. If you think poetry is dull and fusty, come along and have those preconceptions blown to joyful bits. More details as it approaches.
The Vibe Bar gig went very well you see, and I had great feedback. Though, true the stage was not accessible. Sigh. Regular occurrence but maybe the venue will think on that now.
I'll add another photo from my modelling session with Tanya Raabe, which took place a few weeks ago. It was a great day, working with a class of disabled art students who had never had a life model before. So the poor kids are landed with me getting my bits out! They coped well and drew some lovely work based on my bod, and we had a discussion around using a disabled model and celebrating the disabled female nude.
Tanya of course is outstanding in all she does and the sketch here is a favourite one of mine. She captures something about me... it's almost spooky. I am always honoured to work for her and believe her work is revolutionary and essential to developing themes in art, not just disability art, but it certainly enriches that as always.
My novel Fancy Nancy is now out there, as in someone with some clout is about to read it. I truly hope they like it, but meanwhile, please, this is my begging letter moment, if you are or know a lit agent, do get in touch. I'm ready and I'm ripe to hit the world with work - we can have much success together!
I remain interested by the way, in how artists make decisions about what to do, or not to do, in terms of extra work. I'm streamlining right now....
Ok that's enough. More soon, and hope to see some of you on 21 April.
Tonight I am doing an Open Mic slot with Jo on cello at the Apples and Snakes for women. I believe the lovely Liz Bentley is MC-ing too. Liz is a joy to watch and experience if you ever get the chance.
I hope we can spin a little magic for the audience too. If you're in the area do come long. I know I'm rubbish at letting people know in advance but sometimes these things spring up. It's in Brick Lane, East London - in the trendy Vibe Bar - ooo get us. Come along if you can.
Meanwhile in daily grind of life, I find I am caught up in nightmares of bureaucracy gone as Gaga as Lady. Gaga can be great, but in this this sense, it is the thoughtless, uncaring and indifferent kind.
I'm scarcely coherent as I slop around in my PJs, threatened with eviction and debt - because people stop being fully human, and are not doing what they are meant to do. And oh, pardon me! Because I don't fit in a box, and so, they can't tick a box to make their lives easier, I am carolled into a no-win situation. You all know it well. Forms and more forms. Proof of your worthiness. Proof of your poverty. Proof of your crippledness, I've even been told to 'give up work because it's 'easier'.
I'd like to know if any artist has done this. Decided that the fight against the system, no matter if a cliche, is real enough. I have multiple impairments including some heavy health conditions. Yet I can write and speak from my bed if need be. Mainstream view cannot compute such a notion.
Stuff happens that's good. Modelled for Tanya Raabe again - see photo. Will blog on that anon. Novel creeps closer to finish, poems get written. Going for an AC development grant. But all threatened by the other stuff.
Tips for emotional survival, anyone?
I've just left a comment on the editor's blog concerning the new Ian Dury film. and it made me feel a wave of nostalgia for Ian and my baby years as a punk.
It was hard being a punk when so few venues had any hint of access and actually it makes me realise that some of our battles have had a real effect on waking society up to removing some barriers. This can be seen in the hard environment, more than anywhere else and attitudes remain especially slippery if not entrenched. If things were otherwise we would have a brilliantly talented disabled actor playing Ian!
My younger brother by 2 years, was also a punk and through him I was able to get a taste of what was going on out there. We shared records and he'd bought Kilburn and the High Roads - the band Ian was in before Blockheads.
I remember vaguely one of the album sleeves showing Ian with crutches - or was it another band member?! I do recall picking up very quickly that Ian was disabled. A crip. Like me. His anger and humour hit me with its passion and empathy, and truly changed my life.
I was in a specialist hospital institution a lot in those days, for long stretches of time, and it was a very sweet pleasure to blast out Plaistow Patricia (from LP New Boots and Panties) and the line 'arseholes, bastards, fucking c*nts and pricks' when I was down and depressed.
I met Ian Dury for about 30 seconds at the iconic disabilty arts event in West London in - 1981?? I believe Allan Sutherland has written about it - it was amazing, one of the first.
Dressed in my tight leather bondage dress, as 'Kata Kolbert' I was hawking my musical stuff around then, and my music was loud, punky-electro and very political. My partner Andy politely approached Ian after he did his slot to hand him a demo.
I was a timid, nervous little rabbit in those days and could only grin like a daft child and mutter hello, utterly overawed by meeting him. He was lovely, funny and of course very encouraging.
I feel sad he's not around now for us to talk to and exchange, and maybe argue happily with. I once read an interview with him talking about sex and disability, and had his impairment stopped him getting on. He said "no" by the way.... !
Happy new year and all that. But without snow, please. Yes it's pretty. But, of course, not accessible. It makes me apathetic. I have so many projects on the go, and I feel frustrated many are stuck because there's this freeze up of the UK.
Last month I was here there and everywhere inbetween being ill. I went and modelled for Tanya Raabe and we were on Paul Darke's radio show. I managed not to swear - I don't do that generally, but radio can make naughtiness pop out. Going up to Wolves again soon, performing with the lovely Jo Cox.
I did some exciting stuff in Brighton on Dec 3rd, sharing the stage with Liz Carr, which was sooo much fun. The Jesus poem went down well - I think, though we all felt the audience were a little subdued.
I've had ridiculous toothache - an abscess. The tooth needed yanking and of course this became a bit of a palaver as I am not one of those Norms with standard shaped anything. In the end out it came but now rather sore and grumpy.
Question: I am re vamping my flyer for Spoken Word gigs. Should I be disabled specific and why? Am I that, and yet more? Is it a label I need anymore, and who is it for? Are there any historical equivilents and parallells and can they guide me?
Come on, lets debate and argue! It might make me feel less.... disaffected!
I look at my last blog and wonder if there's a conspiracy against me concerning time. It really is relative. Ok I don't know what that means exactly, but I have a twinge in my guts that it's related to um, what you are doing.
So, I suppose I must be happy that time is hurtling by because I've been very creative when not doing great impersonations of a Victorian In-valid with a porcelain sick bowl. Yeah, the bugs have been at me and in me, urgh, but I'm fighting the good fight.
I'm juggling the balls of about 5 creative projects even so.. A great deal of my time is taken up with my film making. It became tiring, writing scripts, writing treatments (tormenting things, they are) to face constant disappointment. So I bit the bullet to start making shorts on a decent Sony Handycam.
Here's my latest piece - 'Bonfire please please please view and rate for me as this is a competition! I hope you are all infected with the sense of fun. We had a ball, me and Janis, keeping ourselves in the main rowdy throng, though it's not for the faint hearted.
I would love you all to view and comment on my YouTube pieces too. There's a narrative short on there now Diary for Lawrence which was the first film I edited having had lessons from Katherine Araniello. I hope she's proud of me!
There's a few others on there so please have a peek. The first one was 'Toilet Trauma in Epping Town'. The power of the internet can be damn amazing. The film, done as a piece of fun on the spur of the moment, was picked up by a local newspaper, I was interviewed. The council was challenged, promises were made. I believe the Invalid sign has been painted out as a first step! Wow.
There's also been a flurry of activity on my spoken word, at least in terms of writing new material. You can see a clip on my Youtube page from 'Bums, Homes and Hell'' - which is from my BAC Scratch performance of last year. This version was filmed at Ada Street in May.
Which reminds me...
Recently I ventured into Peacocks. Yes, the clothing store. And then, lo....!
Jesus Saved Me in Peacocks
By the purple stiletto heels
A woman told me he loves me
That He understands how I feel
Maybe it’s true that in Peacocks
Many gods lurk in the clothes
The rumpled crumply undies
The dresses in disordered rows
....that's a taster, there's more and I hope to perform the rest in Brighton on Dec 3rd!
Meanwhile, yes, of course there's a meanwhile - I've been networking with Graeae in their fine new building, I've been up to Shape to see Tanya Raabe's incredible portraits, I've modelled for her (naked of course) in Wolverhampton, and been on Paul Darke's radio show.
Phew. Watch this space, all spaces and any new space that may appear where a Penny might fit some new tales to tell. Sod the sick bowl.
The Penny who needs Nine Lives to Do Everything
I don't need the Nine Lives as do cats because I am reckless and have close shaves - well only a little - but because I always make a point, indeed a practice of biting off much more than I can chew. And I only have tiny cripple's jaws you understand!
Liberty on Sept 5th was amazing and a little peculiar at times. I love to speculate on what the random tourists make of all these disabled people strutting their luvvie stuff in various ways. I won't deny that it's an enjoyable experience to have a day when you know you're going to be reasonably looked after as a professional artist.
You get a decent sound check and you can state what you need. Simples! And reassuring. Me and Jo were on top form, I know we were. We came on after the Ouch bit mind you with that Mat Fraser and Liz Carr... (ok ok, as good as ever) but it was a bit tough, though the audience were warm and responsive even if some elements clearly feel they need permission to respond to my audience participation bits. Oh dear. We do still have a long way to go.
Ever onwards, I am currently compiling a spoken word/performance poetry database primarily for London and the south east but if anyone knows of any venues elsewhere with access do let me know.
There is a good site for this sort of thing called Write Out Loud which lists venues but not access.
This whole scene is very broad based and exciting at the moment. It is not your worst nightmare of 'school' poetry, believe me. While the range of work performed ranges in type and scale, do check out what's available out there, you are a poet or story teller of any kind. One tip I picked up early, is be good at what you do, don't be slack or unprofessional - and get your words heard.
I want to bring you into the debate about whether to mention disability on my latest flyer or not! Yes. Is it necessary and why should I?
More on that soon when some of the many Lives calm down a bit.
I know I said there'd be more Edinburgh and there will be before this blog is done and dusted but you see Liberty rushes closer and I still haven't 100% decided on my set. But I am very excited, like a kitten who keeps running up the curtains, sort of, and falls off but doesn't care and does it again. And again. Honestly it's best I stay in and don't scare the Norms when I'm like this but not this weekend! I'm doing 25 minutes with my lovely cello player Jo Cox and I do hope the crowd will like it. Lots of poems, a song and some audience participation. I can say fuck apparently, but not c_nt. I only have c_nt in one piece so I'll try and clean it up.
I have a sense that people want to know what I'm up to with my words these days so I hope they enjoy it. I'll be selling copies of 'Desires' too at a special Liberty price!
Before I return to Edinburgh, I have to mention my Pulse application. This has kept me up will 2am. And 3am. These processes are so intense. It's a try for funding to make a short film using digital technology. I want the effing money to do what I can do! I'm fast becoming an old bag, maybe that will make it easier, maybe not. I can carry on with the development of my disgraceful naughty old woman act I suppose and cheek can get you a long way. Keep all things crossed for me. I'll put you all in my films, promise, when it happens.
Edinburgh, yes. I saw many lovely things and also many rubbish things. One fabulous show was a piece featuring disabled dancer Julie Cleves and her non-disabled dance partner Robbie Synge. Called 'Ups and Downs and Whoopsie Daisies'. this was an exhilarating crafted double act of dance-theatre which truly did turn expectations upside down. Cleves, a wheelchair user, worked entirely on the floor in pieces that were touching, intimate, at times angry and even nerve-wracking. Julie creates a sense of excitement, strength and power with her body and her movement, underlining the absolute beauty of diversity in form. Synge's grace and athleticism matches her perfectly in an exchange of trust both literal and metaphorical. Constantly pushing boundaries and definitions of dance, the piece (and the dancers) deserve more exposure and much respect. http://www.juliecleves.com/index.php
At the other extreme, was Unthinkable, a baffling play written (I believe) by a non-disabled playwright in which there is a future government of 'elite' - the physically impaired who have created a world of happy perfect political correctness in which we are all tolerant and er, happy, and um, equal. Yeah. There are 'amputation clinics' for those aspiring to join the 'elite', while a baby exchange programme means more fairness and cultural, diversity mixing. Of course all is not well in this dystopia of nasty cripples forcing their pc views on the norms, who yearn to keep their perfect babies (etc). A character called Florence Margaret Thatcher is an activist campaigning to stop the baby exchanges, and when she falls pregnant, a plan is hatched with minor government goody-goody Mrs Fin to enable her to keep her baby. Oh god, I can't tell you more. Apart from the muddled plot, and the half baked 'correct' language, the whole premise is simply too perplexing and dull to detail. I am not sure the writer intended to offend disabled people - the piece is too unfocused even for that, tho if the 'elite' were not the disabled community, but another minority community.... there would quite rightly be an outcry. Oh access to this play, in a space at the Royal College of Surgeons (II Conspiracy!) was not obvious and poorly thought out
And this brings me to what I am most aggrieved about at Fringe. Access at was shitty as an audience member, but shows BY disabled artists were very absent. I sat there glowering at this play knowing I should be there with a full production of my own.
On this note, please keep up with Ju Gosling's fight for access http://www.ju90.co.uk/LWP/index.htm - to The Letter Writing Project. I believe I was in watching the confusion that was Unthinkable when Ju made her first action there. It really is not good enough, simple as that. Please follow and support.
I had a weird 'ramp' moment on my second Open Mic - which was at Zoo Southside. A few mates in the audience and a nice range of ages encouraged me. But.... the MC announced no access to the small stage. He would bring down the mic to me, he said. Ho fucking hum..... But as we grumbled and said well, not equality is it, a few minutes later a chap appeared with a ramp clearly designed for the access to the stage. What can one say? Anyhow, the slot went well, one old man nearly weed himself at my 'tits' poem (not as bad as it sounds, honest) and I had good feedback afterwards. People often say I am quirky. Ju was sweet enough to say I was ahead of the pack and by far the most professional.
Onwards and Upwards - but not without that bloody access. At least Liberty promises that. We hope.
Oh bum. Big bums. Double big bums. I wrote a fantastic blog, I really did and guess what? I clicked back by mistake and it vanished. As I sit here crying and laughing simultaneously, there's a lesson for you all. For fuck sake always save. I should know better. But I guess I never will.
Anyhow, not long back from a four day frenzy in Edinburgh. At Fringe universe, which is a parallel universe where there is no time, it's not even relative, except as to whether it's drinking time or eating time. Crowds gather, all hours, like buzzing little hives, moving between events and sustenance - and now I am become one of them.
As I flip off the train bleary eyed after a four hour plus journey, I try to adjust quickly to Edinburgh's multilevel, history thick, street ways. Everywhere seems a warren of steps and confusing ramps and the sky is a sulky grey. But eventually I find my way to the hotel, just off The Royal Mile, and before I know it, I'm scooting off to see Ju Gosling's exhibition Abnormal (
http://www.scientificmodelofdisability.co.uk) which is on at Theatre Workshop, on the edges of Fringe land. It's something of an endurance test, much tougher than anything on Beyond sodding Boundaries getting here as a wheelie as Edinburgh's craggy cobbled streets go up and down like a mini mountain range. Thank the gods for a strong armed PA and various friendly natives stopping this soft southerner from going splat on her face.
Shown in the somewhat cramped confines of Theatre Workshop's cafe, this is my first time seeing Ju's exhibition. Apart from a little disappointment at the striking colourful prints of wheelchairs being hung too high for me, I am most struck by the humanity in Gosling's work. While placed inarguably within an equalities framework, the pieces have a universality and a gentle humour I liked very much. I particularly like the cheeky little amusement arcade 'grabber', which picks you a genuine Chinese fortune inside what I believe are needle cases.
I'm realising as I write that I can't do a chronological blog, as the festival doesn't deal in linear. It's sensory overload mostly, and the feeling of moving, bouncing in my case (the cobbles!) from event to friend, friend to event and so on.
On my first evening, Liz Carr offers me a ticket to see comic Adam Hills (http://www.adamhills.com) at the Gilded Balloon. Hills has a relaxed style and his take on his own disability and in general is funny, sometimes bizarre but always with ownership. I liked him.
Each day blurs into a merry-go-round of linking up with friends who are performing or seeing shows. In my usual state of poor planning I had not managed to secure anything myself in advance, but ambition sharpened a few little claws inside me, and I spotted a cabaret open mic going on at Zoo Southside and the open night at the Scottish Story Telling Centre.
Now I consider myself a story teller in the broadest sense. I can tell a tale in any form really, it somehow all slots together in the head, the heart, and comes out. But story telling in this sense is different. No safety net of a book, a script, a scrap of paper. It can be a retelling, it can be a reclaiming, a passing on of a tradition. Of course I am most interested in making sure that the stories of disabled people past and present, are told and acknowledged. So urged on by the knowledge Liz was going to be there grinning at me, and sensing the audience were friendly, I went for it.
I was third up, after some trad pieces. I was shaking and breathless, aware that I would be quite a novelty to them.
My piece was based loosely around an experience from my own childhood, but transmuted into a pared down story telling style, on themes of exclusion and racism. I surprised myself - eight minutes passed and I had a warm response. A man in the audience made complimentary noises, pushed a piece of paper into my hand. He was an award winning story teller, and this was his contact details, and an offer to publish me on his website, and translate me into Russian - ! A magical moment of Fringe.
There will be a part two - tomorrow, maybe over the weekend. I'm back in London now, still weary but full of smiles, despite frustrations many of us experienced. More soon. Much more.
Oh how does time manage to do that thing of flying by so fast?
Is it really over a month since my last blog? I am naughty but my reasons are sound.
Since then, I've been to the Shape disability arts debate, organised by the lovely Michele Taylor, the BBC to yak about casting, and to the launch of Hibiscus Red at the BFI.
There's also been exciting developments with a new PC, though sadly I am now immersed in playing with a toy - Music Maker, which takes me back to my days as a singer songwriter, though I have to say this is mightily frustrating as you can't get the bastard to easily record voice and in a very 'pootery way, it wants to tell you HOW to make music. I have a strong detestation of anyone telling me HOW with anything.
The BBC was fun to visit and I felt briefly very important to be in parking space 1. Yes, 1, at TV centre. I chatted to Sarah about going in the directory of disabled actors, thinking back to my Graeae days when I was 'cast' as a period actor (as opposed to an urban one) and also a naughty housewife type by a mate (she know's she is, cow!) Period actor? The mind reels. I wouldn't say no to a mop cap in a Dickens though, if they give me a reasonable posh bath chair to look invalid-y in, Though bursting from a tight corset might be more to my taste... and no, not a surgical one.
Red Hibiscus is a very new, early stages organisation supporting disabled film makers and all interested in working in the industry. An interesting event, Julie Mac said some great salient comments and we all chipped in. Later, nice chat and catching up with mates to the point of being chucked out as the bar closed. Me, I only drink Pimms, these days.
And, Thursday, 26th June, Whitechapel Gallery - me, doing Open Mic spoken word on the Apples and Snakes event (http://www.applesandsnakes.org/events ) You'll love it. Do come if you can, it's so good to have friendly faces in the audiences, or even scowling ones if I at least know them.
Anyone out there know of Spoken Word venues on the south coast? Or anywhere really!
Off into the sunshine now, and hope you are too.
I'm buzzing and giggling. 11 pm and I've dropped off Jo Cox, my cellist, who plays musical accompaniment to my spoken word. It went rather well and I have that sense of satisfaction spreading a warm happy glow about my being, that feeling of knowing when you've done something you are meant to do, what you are about. And that it was thankfully, rather marvellous.
Dialzero is an artists' collective (www.dialzero.org/news/html) currently curating an exhibition and performance evenings at Ada Street Gallery in Hackney, London. Through a series of connections I was invited to do a large chunk of my spoken word set 'Pains and Pleasures'. Working with Jo on the longer set for the first time, we started with 'Bums, Hells and Homes', a theatrically presented piece in which I am Samantha, a 35 year old disabled woman, holding a flat warming party at her first home. It's an intense 15 minute piece, with different tones and varying pace. Ultimately character based, and told through free form poetic language, I am pleased that the audience respond to the universal themes. Then a few lighter poems to make them laugh to end the set. It was filmed and I hope to uploaded some of it soon.
Very happy and appreciative that a few friends made it, but also chuffed that strangers came up to me afterwards with interest and congratulations.
The most valuable – and welcome – comments are that it made them think. laugh and question. What more can a writer hope for?
One friend wanted more, and more. Said I was class, and the best of the evening. Biased she may be, but it's still lovely to hear that!
One reason for my lack of blog has been a period of intense activity in all the multiplying strands of my life. Things have always rolled through peaks and troughs for me, and in the last few months this has never been more true.
I wrote about Independent Living Funds. The powerlessness these enforced 'social care' systems can impose on us. At a personal level, this has now had some closure, but I am more aware at how others battle on and how those who can speak out, must.
These human rights to be, to live, to flourish are fundamental and while I've always believed this, in these times when we are undermined up to the point of legalised murder being pushed as a solution to perceived challenges, I have never felt so passionate in defending and extending these rights.
But what's else have I been up to? There's been fabulous, hilarious times working with Katherine Araniello, and making the trip to Paul Darke's Disability Film Festival in Wolverhampton, a few weeks back. I met and had a great (but all too brief) catch up chat with artist Tanya Raabe after far too long a gap, and Katherine and Aaron Williamson put together a very funny performance piece for the fest.
I trailed around filming them and various with my lovely new camera. I've gotten that bug, all the way back to the punk ethic of DIY art culture. While I've written scripts for some years to try and mainstream it, now I have a camera, watch this space! As a fluffy taster, do have a peep at my films on [YouTube](http://www.youtube.com/user/PenPepper ). These were made on what is effectively a cheap pocket digi stills cam, so just wait till I get to full grips with the Sony camcorder.
I'm laying in bed, it's almost midnight, remembering that tomorrow there's worky work. Participation in a workshop, and then oooooh, in the evening the excitement of a big 25 minute spoken word performance. I drift off, feeling the little curls of anxiety I always get as a gig draws closer. This is me out of my comfort zone; not in the safe confines of disability art. But it's also me, attempting entry into the mainstream, as always, to subvert and provoke. It has to be done.
Will they like my Bus poem? Here's a sample verse – read with a staccato beat:
There's a trolley in the crip space / There's a child snotty faced / Bullish buggy hellish mummy / Disposition far from sunny
I drift off to sleep thinking I will end with this piece, as it is upbeat but also there's a bit of crip politics in there too!
I remain creative and really pleased with my progress on many projects. But over the last month all efforts and actions have more or less been consigned to the bin of wasted effort.
I'm fighting Them. The faceless indifferent Them. It is horrible, undermining, and frightening to be in this battle. At this point They come in the form of ILF. Independent Living Funds. Some of you will know about ILF, many will not. In essence, ILF contribute to the costs, shared with my local authority, that enable me to employ Personal Assistants. This is called Direct Payments and many disabled people are on such a scheme. The key issues around Direct Payments are flexibility, choice and control in how 'care support' is given.
PAs enable me to have my basic functions attended to, but also to effectively live a life, to go from A to B to Z if I need to. PAs remove barriers by their faciliation of tasks I cannot physically perform. Let there be no misunderstanding: without a PA I do not take part in society or have a rounded full life. Forget being an artist, a creator, a story teller! A PA, under my direct supervision, actions the flow of my life, so that I CAN be that creative force.
Without warning, my ILF funding was suspended, and demands for mountains of paperwork were made to me. Instead of working and finishing my novel, instead of giving focus and attention to developing my property business, I have sat here for days, replicating information to send to ILF as if in some Kafka-esque nightmare. Information given to them already, also from my local authority, by my social worker, and their social worker. This pile will go to individuals who show no understanding of using PAs, or the intricacies of managing Direct Payments. I, on the other hand, have 15 years actual experience.
ILF is funded by the DWP and I have found out that ILFs budget was cut last year. All this nonsense is really about saving money, and as usual when there is an economic crises, disabled people are seen as an easy target from whom money can be withheld.
I hate saying we are powerless, but in some senses we are. Such a situation will not hit the national media easily, and this is because there is still a tendency to see us as being within the health sector and having no importance other than our statistical role within a welfare state. If equivalent funding cuts and approaches were made to individuals so unilaterally within education, or towards MPs and their pay packets perhaps, I am sure it would be across the press and beyond.
The reality is I work. I took the leap into self-employment, encouraged by New Deal and Working Tax Credits for disabled people. I came off Incapacity Benefit. I pay tax and national insurance contributions. The contradictions must be obvious. ILF, with their sudden action, risk putting me out of work. If I cannot pay for the assistance to get out of bed, what do they think will happen? The situation highlights not only the hypocritical views towards disabled people, but also the confusion and ambiguity. Who works? Who can work? How is it decided who can work?
I'm fighting ILF, of course. But it should not be necessary. I do have an impairment that affects my stamina, and should be conserving my energy to WORK happily on what I do well, with the creative skills and talents I am fortunate enough to possess.
Rest assured, this is not the end.
Julie Walters starred in a one-off drama on BBC One on 25 January, inspired by the true story of Dr Anne Turner, who in 2006 took her own life in a Zurich clinic having developed an incurable degenerative disease.
It's a cliched beginning. Moving, moody, pity-inducing music. Man in wheelchair, eyes sad. Immobility. Comments fly - he's suffering, he's 'reduced to this'. This is Dr Anne Turner's husband. He dies after the first 5 minutes of some 'neurological' issue.
When Anne gets PSP, we're on the roller coaster, or should I say, rapid flight path towards that famous Swiss clinic, Dignatas. Where, as Anne comments brusquely, 'they let you die if you want to, they have the decency to let you do that.'
This is clearly the medicalised route to chosen death. The cliches of tests and scans, reaffirming this is a doctor in a doctor's world. As she writes the letter to Dignitas, asking to make that final appointment, she details that she needs help dressing, she has no power in her legs, she's prone to outbursts and irrational behaviour. Clearly, that's a lot of us ready for the extermination list then. It makes me wonder what this woman made of her disabled patients? Is impairment always a situation to be managed by 'others', and never 'you'? I am alarmed to note, that even at the end, if the portrayal is accurate, Anne Turner had more movement in her body than I've had in my living memory which has a sobering implication.
Of course, Julie Walters', an actor I have long admired, gives a performance that is strident and genuine, of a woman confronting the new challenges sudden impairment does present. Yet it's basically a predictable portrayal of a 'fit', non-disabled person going through the 'worst nightmare'. A galloping through 'the fear of the fear' of multiple impairment, and the dread all that might bring.
She attempts to shovel the pills down her throat and put a bag ove her head,not long after her first clutch at a walking stick, which I have to admit, having already become sick of her rude outbursts and whining, I find myself thinking, yes put us all out of our misery as well as you. Clare, the best friend, is the only dissenting voice, and she is given about a minute to put an opposing argument along with a request that she is allowed to pray for her friend.
I remember seeing the reports of the 'real' Anne Turner, and one of the most alarming comments she made was something along the lines that she would not let herself end up in a wheelchair. Well hello, that's telling us then, isn't it? There's a lot of this view in the programme, an underlying disparagement towards living with a disability. She has a violent rant at the idea of living in a bungalow – to what, living on one level? I was screaming at the telly, get a fucking lift then, some decent adaptions, and a good Personal Assistant for fuck sake.
It is discomforting to know that this drama is a story based on a real person, with a family who are no doubt still coming to terms with the pain caused by this situation. I am aware of wanting to respect this. If this were my monther, if I were to be in the heart of these dilemmas I would be ripped to pieces looking for resolutions and I certainly would not have an easy answer.
Yet I am, as always, most troubled by the broader, core context to this issue, which is there is no counter-balance, no opposite side to this story, no loud, proud, defiance against this view. Which means it feeds into the idea that any of us in this situation, near to or approaching it, will feel the same, and if we don't, the pressure to take on this belief we have to die, increases with the broadcasting of this type of story, when exposed across the media.
There is also something deeply disquieting in all this, highlighting how society slyly and increasingly values and encourages suicide above the desire in many to simple Be, to thrive, in defiance of all challenges. The serious lack of balance in the whole of the media, of any mainstream representation of disabled people wanting life, who are fierce, proud and celebratory in who they are and what they do. Fighting the barriers, loving life, and enriching society, of which we are a part and always will be.
I am not of any religious orthodoxy, I have no pro-life fundamentalism. I actually believe as individuals we all have a right to die, (preferably quietly, with privacy) but I do not and never will support the idea that suicide is an automatic response to impairment of any kind, which is the implicit message in this drama.
I am a disabled person. I am proud of the adventure I've had and am still having. I am proud of my body and my identity – all formed and influenced, good and bad by the crazy journey this labelling of disability brings me. I love my life and the gift I believe it is. Pain and suffering, I've had that. Love and pleasure too.
That's what it's all about – isn't it?
You can see programme details at http://www.bbc.co.uk/programmes/b00h62w9
I hope our charming editor will allow me to plug my latest baby, which is my spoken word set. 'Pains and Pleasures' – An adaptable portmanteau of spoken word performance and readings by Penny Pepper – reflective – provocative – witty – passionate – burlesque'. I can send the flyer around to anyone interested? I am super keen to GET OUT THERE again, and remind people I am here and wanting to connect, amuse and provoke. Come on, ask, book me, I am friendly and don't bite (generally). Photograph of writer
I would enjoy hearing from other artists on the Spoken Word circuit. How's the access? Any good venues?
The developed one-woman show is coming. Slowly. All this creativity spilling around is taking time, and making an AC application needs fullest attention. I need a good director – any offers? I am pensive, I am burlesque, I am rude, I am lyrical and quirky.
Incidentally, I sent out Fancy Nancy to 7 selected agents. Now the wait, as I visualise my undies off, with positive thoughts of seeing it published. You all know you want it. Pretty please.
As for the super rolling flowing high? It's manageable. Just. And still no valium...
My lovely therapist is worried I am reeling into an extreme high. I am sometimes exhausted and need post-it notes to remind me when meal times are, but I can't say I hate it. I love it. The creativity tap is on full and my bath of ideas has over flown and streams into the world. Oooh, a soggy metaphor, but I'm keeping it.
There is so much to write. So much to do, so much to Be. I don't want to think about downers.
I cold called some literary agents. This is a very scary thing to do. The hope is that you can slip into a natural cheeky charm and they will remember who you are when your manuscript plops through their letterbox. I say, 'there is no one like me and no novel like Fancy Nancy'. I believe it. You have to. A few agents get excited but point out they are receiving up to 300 novels a week. I tell myself quietly mine will be at the top of the pile and there will be a bidding war over it.