This week my love-hate affair with writing has me in its thrilling and painful grip. Writing is like an old friend who sometimes annoys the fuck out of me, and sometimes wraps me in arms of pure co-operative elation. Recently it’s been a see-saw between both and admittedly the ole Borderline has a role in this. But, it helps as much as it hinders. Exquisite highs bring great bursts of creativity as much as the pits of anguish that lead me to unfortunate behaviour and the whole frustrating circle. Occasionally the fast dips into desolation can result in outpourings that stand up to later scrutiny.
It was very trendy to be Mad this last week or so. Mental health ‘poster girl’ Ruby Wax did her stuff in fighting the stigma in the work place. I do get a tad uncomfortable. The portrayal of Mad people (whatever our precise shrink labels) can be saccharine. It doesn’t always feel full bodied enough – is that too scary? Perhaps. I suppose there’s always the danger of it becoming like a Bedlam tour reborn. In a programme most likely made by Channel 5. The Woman Who Sliced Her Skin Off and Made Herself Vomit (et al).
I do acknowledge that generally it seems any kind of PD makes even the toughest mind medic blanch. I told my newest ones as much last week. They tittered and argued this was not true. I pulled a face and went hmmm.
I met Ruby in August 2011, as mentioned in my blog of Oct 2011. I’m down from my high now, not so much disappointed in Ruby as working my thoughts around to a realistic view. She is still new to this. I asked her last year at the audience Q&A if she thought there was anything positive to be found in having a mental health condition. She paused, then said ‘no, do you?’ I smiled and said, I believe it makes me who I am, how can I not?
In one amazing tangential leap I will move to the Olympics. (Tangential conversation and thought is one of my personal hobbies, no apology.)
Controversy alert! I’m enjoying them. Is it the sense of history perhaps? Being a Londoner, and a scribbler? I don’t even like sport much, before we even mention ATOS. Maybe Danny Boyle slipped a subliminal message in the opening ceremony, which I also adored. Music of my youth! The Clash, The Jam, for fucks sake. Irresistible. Made more fun with some close friends over to share the experience.
A couple of us indulged in live Tweeting as we watched, adding another intriguing layer. MP gets the hump at the ‘leftie multi-cultural crap’, tweets swarming to attack him, UK Uncut get an image out there of the arena after the NHS ‘advert’ section, we laugh at the remarks that everyone outside of the UK would think what the damn is this about? But they love it anyway because all Brits are eccentrics. Aww.
Back to the sport. I don’t watch it obsessively, I tune in now and then, entertained for a while, mostly by the personalities and STORIES than the actual winning bit, then I’m bored and go back to my film obsession.
As for ATOS. Let me be clear. I detest ATOS. I loathe the overt capitalism blatant in the sponsorship of the games and hate that ATOS is part of that. I will join in any protest against ATOS that I am physically capable of. I was there at one of the first demos, I do my online stuff, my local campaigning and will continue. I don’t see a conflict in supporting the actual participants because it is ATOS who we must fight – and surely this is a great opportunity to highlight their hypocrisy while acknowledging the talents of the individuals who are committed to their sports, art and cultural participation.
Is this bias? I don’t care. A few of my friends are in the opening ceremony of the Paralympics. I am proud of them and the exhausting work they have put in. They are fully cognisant of the role ATOS plays in the attacks upon us. They see the line, and know where it is.
I will try and go to the Paralympic opening ceremony, when there’s a scandal over unsold tickets… AND to an ATOS demo. I am a writer after all, and if euphoria hits on those days, well, what entries for my bulging, greedy journals!
As I am in the tower of word, to half steal a line from Leonard Cohen, I am letting my good friend Gabriel Pepper have his say here today, in the form of a speech he did for his local DPO, where he is Campaigns Officer.
Gabriel is a powerhouse of political activism, from going on actions, to constant online work. It is central to his life now as he sees what we are fighting for.
I politicised Gabriel over the years we were together. I am very proud of him, and hope you will take heart from his impassioned words.
"......The next three years represents the most important years ever in the history of the fight for disability rights in UK. Yet we and disabled people in the past have fought hard for benefits, DLA, independent living, a semblance of equality and transport and now, what is happening?
The UK has a severe problem, because we have a government that has done its best to destroy the welfare state. This government has totally ignored everything disabled people have said, but for instance, have just ploughed ahead with the appalling Welfare Reform Bill and Legal Aid Bill.
I regard these as an act of right wing fascism by a tiny minority of extremely rich people, who do not care at all about the misery they will cause. It’s all about money to them, and most disappointingly they have used the British public against disabled people, influencing the media - resulting in propaganda and endless TV and newspapers crammed with bogus statistics.
Friends of mine, even my father, have been saying that the measures are needed because we cost too much, and I have told each one that they have been fed a lie.
One thing the Tories love to do is to blame the poor for being poor, indeed the government have effectively declared war on disabled people. Therefore if I can reiterate the words of Winston Churchill - “I have nothing to offer you but blood, toil, tears and sweat”, in the same grim spirit of defiance.
Let me tell you what I foresee, because it needs spelling out. Part of the problem is that the government have no clue about being disabled and getting benefits.
These people may believe that disabled people will find jobs, in a job environment where there is none. They have also made it nearly impossible to get legal aid, so the awful decisions made by ATOS (the company which throws people off benefits) will stand. There will be no appeals.
At the same time as this we have a top to tail reorganisation of the NHS, due to a bill forced through, no one was allowed to see the risk register. Let me be clear. This bill was detested, every medical professional was against it. Its only necessity was money and the ideological need to destroy the welfare state.
Let’s not forget the now infamous and hypocritical words of George Osbourne, when referring to the Welfare state - 'we are all in this together' – and the empty promises of ring fencing NHS funds.
The government have set in motion a care catastrophe, which will mean that countless people will suddenly be unsupported in multiple ways. With nowhere to turn, without being able to get meds for illnesses, they will descend, in critical states, on the NHS A&E unit and the like, which will be unable to take this strain.
There will be some people who become desperate. Those people will do acts like setting fire to themselves in public, and already two people have. Everywhere there will be people dying. All over UK there is a fine network of care, everyone knows someone who is disabled. We can only hope there will be a tipping point, an outcry from this network AND ourselves, after which there will be a huge vote of no confidence in the government. We must work with all our allies in this sector to lobby for this to happen, pushing home the reality of what is coming our way
There are many examples of this government’s dangerous ignorance and brutality. One is the new PIP, which everyone who gets DLA will have four weeks to claim for. If individuals are unable to respond for practical reasons, or are distressed by the process itself, then it appears they will be cut off from benefit support, something which will particularly hit people with mental health issues.
It must be said though, that this is if the new computer system which has a laughably huge cost to process all this, does work. Signs are that it is not expected to.
To rub salt into the wound the government have also enforced an awful scheme called workfare, where they expect people to be exploited by rich companies without being paid, most famously recently with the jubilee stewards. Studies have shown there is no evidence that more people will find work, it is an attack on the poor and unemployed.
A harsh part of this scheme is benefit sanctions, which can be for as long as three months. Meanwhile the operators of workfare schemes have been defrauding the government for as much as £40 million pounds. I said to my disability activist friend the other day, 'how do they expect us to find work, when there is none'. She said, 'they don't expect you to find work. They expect you to die dear'.
The government has shown several things already. First they have shown an extraordinary degree of incompetence, taking UK into an unnecessary recession, doing 35 U turns, and repeatedly turning out toxic policies. The Tories have become associated with toxic policies, and this will eventually destroy them. When the tipping point is reached and the laws are revoked, we will at last be able to move forward.
One result that these attacks have achieved is that they have brought disabled people together. To fight these vicious attacks, Disabled People Against Cuts (DPAC) have been organised, and I am a member too. DPAC have been joined by the Scottish group, Black Triangle, UK uncut, Boycott Workfare and Socialist Worker along with a host of smaller organisations.
The fact that disabled people have now become more political has now mobilised the Labour party, particularly John Cruddas, who I think will be a key figure in the fight to save the Independent Living Fund.
Regular demonstrations are being held, the next is on 28th July, when Counter Olympics is running a March starting from Mile End. DPAC is anti-Olympics because of the Tory ideology connected with the games, and their disturbing use of ATOS for sponsorship. Boycott Workfare hold regular demonstrations, indeed I took part in one in Walthamstow in January 2012, a month in which I was also chained up in Regent Street as part of a direct action organised by UK Uncut. To finish, I want to paraphrase some lines written by UK uncut:
When everything you have is systematically taken away, why not make a stand? When your voice is taken away, why not shout from the roof tops? When you look over your shoulder at the privileged, protected from this mess by their ability to bypass public services through flexing their financial muscles, why not get angry?
There’s nothing left to lose. Welfare, health, social care, support funding, voluntary sector, housing, legal aid... there isn’t anything this government won’t dismantle or sell to the lowest bidder.
The deal you thought you had with the state has been broken. You were led to believe that … money would be used to build a society built on fairness and equality. You believed if your circumstances changed, you would be supported; and your children, your parents, your friends.
Instead, your money funds private moats, duck ponds and an Olympics which will break the financial backs of those who are least welcome at it – us......"
I will be back soon myself. I'm fighting with every word I commit to the page.
The sun is out, I have a new garden to play with (huh, for now) and my mood is a tad better. I’ve been in the wilderness of serious ill health and dealing with the consequences of that. But I’m coming back into the throng, slowly. The Abnormally Funny People gig was good, though laid me low for awhile. I am maybe a little more scarred at the edges that’s all. Scars inside and out, and ones I wear with honour.
I feel many of us will be battle scarred by the end... Today I attended a consultation run by my very excellent DPO, regarding the change from DLA to PiP, which the crypto-fascist government intends to force upon us. I had read summaries of the changes but here was the vile reality laid bare in much more detail. And that reality left me incredulous and afraid. For myself and for us all. We really are teetering on the brink of being forced back into being the crippled, mad, sick undeserving poor of a workhouse era. The stick to beat us must be hard and punitive. We must suffer. How dare we be who we are and scrounge.
In my view PiP is an instrument consciously designed to fail, to help us on our way to early and money saving death. It is ghastly in its cheek, a weak pretender of progress in the form of a terrifying executioner. However, I am also struck that this murderous proposition is so unworkable and unsustainable that it cannot in the end succeed. I hope. Yet I fear there will be a lot of pain before that is realised. Pain and lives destroyed; lives lost. Which is exactly what they want.
My glimmer of hope struggles on from realising how many people this change will effect. I believe it will be millions. The ConDem devils are not interested in ‘real’ disabled people, in our lived lives. The ideas within PiP give evidence to that. We are the scapegoats of the national debt and we are considered a soft target. But with us comes those around us. Carers, paid workers, families. Disabled children with outraged parents. Elderly disabled people with outraged offspring. It goes on and on, a tree of ramification and consequence we MUST utilise.
My mum received Attendence Allowance for me when I was young – the precursor of DLA. It was essential to her in multiple ways the ConDems cannot possible imagine in their rich boy wallet bulging dreams. But mums and dads will be angered. Daughters and sons will be angered at the imposition of PiP. With more to come… so let's grab hold of this!
WE must all be angry. We must speak out, come forward, be counted. A few people said to me about the consultation process: "isn’t this pointless, they’ll do what they want anyway?" Perhaps they will, but we must fight in whatever way we can. For me this is through my work, my words, always, within the boundaries of my impairments and the barriers we face every day.
I will NOT go gentle into that good night! Now, back to the garden, while I can.
I've been poorly and bogged down. Staring at the walls and wondering why I painted them like I did. One is red.
Looking at the news and thinking this is all so crazy. This is a big brew of hate bubbling to a head. Feral gangs? Criminal immigrants? Disabled scroungers? When will people rebel against this?
I know we're battling. I showed my jittery face at an ATOS demo in London, but I could not stay long. The heat and the crowds, too much.
My life is split into many identities and my therapist tells me this is quite common in BPD. Huh. Am not so sure. Outwardly I am mostly on chug-mode. Happy with friends. Annoyed and silent with everything else. Agoraphobic hermit mode a lot of the time.
Edinburgh was a bit of a disaster though I did do the show, along with ending up in the infirmary after falling ill. I also got to meet Ruby Wax who I now adore with a passion. She is doing good and on a journey with her show 'Losing It'. Her memoir is very honest. Let's encourage her to some Mad Pride too.
I'm twitching around my own memoir. Oh 30 years since I started writing journals. They freeze your memories in a glow of fond nostalgia. How things have changed - it amazes me I managed to live in London when there were no PAs, barely a computer, only an Amstrad with its errie green lettering.
There has been progress which we've fought for in many capacities. We can't lose it, somehow we must not let that happen.
I'm a cheerful soul, really. Truly, madly, definitely. Mood swinging, I almost enjoy it.
I did it. Amazed myself and survived to tell the tale, crammed with feverish stories and kaleidoscope memories. All roasted and shaken in the rich, brash, varied flavours of New York.
I say roasted with meaning because it was hot. Blistering and humid, and when up the Empire State Building, I could see the thick smog arc hanging over and into the city. One day hit 39c - I don't believe I have known it that hot before in my whole life. Thank the gods for air con. Yet nothing could ruin this incredible adventure.
I was there primarily for work to get a feel for the city, meet people, and to do a performance at the Bluestockings, a radical feminist bookstore, at an event called 'CripLit' which was brought together by the maganificent NY burlesque queen Jo Weldon who worked with several crip woman at DadaFest last year to create 'Criptease'. Indeed, the first piece to be read (by Jo) was the DAO blog by our very own Sophie Partridge, who detailed the DadaFest event with much verve and colour.
Native New Yorker, Christine Bruno, who has visited the UK and worked on the disability arts scene on several occasions, read extracts from her one-woman show 'Screw You, Jimmy Choo', reminding me of what a talented actor she is. Other New York crips did interesting and intriguing pieces; a visually impaired woman telling the amusing story of the frustrations of being a VI bride and the discrimination she faced, and another set where one woman read a beautiful poem while her colleague stripped and danced and posed.
Aussie artist Kath Duncan – another Dadafest Cripteaser – had her deliciously raw and rampant story read out with great panache by Christine, an exceptional reading especially as Christine had not seen it till that moment.
Then it was the Brits. Our own institution of crip glory Mr Mat Fraser read a fab and filthy story, set in New York, and then it was me. Little ole me making my debut in New York. My mum will be staggered! I did my rather rude ‘Dr-Patient Relations’ spoken word burlesque, developed a few years ago with London based burlesque legend Jo King, and finished off with a new piece call ‘Alphabet Sex’.
I glowed and grinned and basked in my moment. I sold books and Bluestocking took copies as stock. Everyone was lovely and complimentary. I most certainly will return.
I’m full to the brim with New York and the stories will spill out into something very soon.
But for now, slowly recovering from jet lag, I have to turn my thoughts, if not energy quite yet, to the Edinburgh Fringe. I am there from Aug 22-27, performing the show ‘Adventures in the Dark and Light’ – in Princes shopping mall (!?). Quick note: I have floor/sofa bed space in a semi-accessible apartment if anyone is interest – reasonable rates.
But reflecting on an intense and exciting week, in which I felt I made progress with my work, I have to end on a sombre note. The ConDem cuts are hitting. Social services peer into our lives to trim and snip… and slash. A top-notch PA made my New York trip possible in the sense of appropriate support. Yet as budgets are challenged and we are pushed to live in conditions worse than convicted criminals, what then of our work and our aspirations?
The hypocrisy shouts as loud as we do – can we make them listen? We have to, for all our sakes – and not only to have the right to travel, but the right to exist.
Life is busy at Penny towers with much planning – and worrying – going on since I heard I had been successful with my Grant for the Arts. Of course I am excited and bouncing off the walls too. But where to start? Who to work with?
I’m developing a one-woman cabaret called Adventures in the Dark and Light. Please feel free to join my Facebook page of that name if you’re interested in my work. I try to keep it up to date – latest gigs, activities and news in general.
My BPD has been causing me some distress. I hate the word mood swing. What the fuck is that? It sounds almost Victorian but not as exquisite. Like melancholia. I am experiencing fast cycles of highs and low; exhausting, and then I go into a strange gaga distraction for some days. I'm knackered and sometimes scarcely functional. I scare my friends and family... Still, I have done a lot of creative work on the back of it.
But back to ‘Adventures’. I’m looking for a musician to work with me and my cello player Jo Cox. If you are an experienced keyboard player and/or violinist, do get in touch. This is a professional role and will be paid, though some in-kind support would be appreciated. Have a look at my websites. My work is influenced by folk music, punk, the world, blues… all sorts.
I’m also looking for an actor. Male, 28+, able to play a non-disabled GP, Dr ‘Nazi’. It’s for a short I’m doing with Sophie Partridge, called Doing It.
Meanwhile, I did a film, a youtube video blog, of my day on the TUC March for the Alternative. An eventful and uplifting day. It’s annoying that the media concentrate only on the ‘trouble makers’, out of proportion to their numbers. I may be idealistic, but I felt the day did have an effect. It was good for US if nothing else, to join in, to be there and be counted. Please have a look at the film and comment – bearing in mind that PAs who often have to hold the camera are not necessarily very skilled at it. Oh, to have my own crew….
Now I must get on. I’m driven to produce lots of creative things right now.
Did I mention the CD of my Spoken Word? Oh, next time then.
It’s Sunday, late evening as I write this. I’m preparing myself for the protest in London tomorrow, as we take to the streets to show our anger at the savage cuts about to hack us hard. Cuts that slice our human rights to bloody ribbons too.
I haven’t been on an action for some time. From a personal perspective they have always made me nervous and even insecure, as though I was not really up to it, not made of hard protestor fibre. I’m fragile, I break mentally and physically, very easily. I feared I’d be a spare wheel(ie), an over-delicate hindrance rather than of much use.
I do remember in my younger years going on the odd local CND rally, and even a disability action – three of us turning up at some inaccessible bank I think, in a sleepy home counties town, dragging my embarrassing yellow ‘batricar’ buggy out from the area’s council estate scrag-end where I lived. Ironic and a little cringy to report that the said batricar had been raised by local charity… Mike Oldfield even donated 50 quid. How else would my poverty stricken family have even thought of such a thing?
The protest for Liz Crow a few years ago was great though! I still have recordings from that. Tomorrow, I am ready. I have my anti-government Protest Song, written for the DaDaFest Bed-In, and hope many of you will seek me out to sing along.
My writer’s head will be on full alert. I intend to absorb and immerse, record and photograph. Hope to see lots of friends old and new. Let’s show these people that we have a voice, a very loud one.
I doubt any of my pals are surprised I didn't manage to post a DadaFest write-up part two. Distraction, distraction... That's my problem. Sometimes I fire so many simultaneous thoughts that they lead me around in exhausting circles, and leave me in a woeful state bemoaning that I haven’t completed any project. I hope this will change this New Year. If you are ever on the end of my distraction issue – apologies. OK, I have had a weight of annoying health issues too, but the distraction does not help.
I was very chuffed at being short-listed for an Emerging Artist award at DadaFest. I’ve been in emergence for quite some time, and while I applaud Pete Edwards for winning and his ground-breaking piece ‘Fat’, I do think I need to get on with it. Emerge and cut out, yes, distraction, and procrastination!
On a more sombre note, here we are in 2011 facing grim battles with the government and some very fundamental challenges to our human rights. I’m directly affected by the changes to housing benefit, independent living funds and the attacks on Access to Work. Through my connection to various DPOs and of course the arts movement, I have to say it is truly terrifying what is taking place.
We must act in all ways we can manage, on the streets and from our homes (while we have them!) I believe the government believes we have no ‘power’ or clout. We have to show them otherwise.
From a perspective of recent personal experience and my old codger status, I believe the ‘them and us’ mentality continues to underpin the absolute cynicism shown towards us. We, as in disabled people, still carry labels imposed on us, experience barriers we did not create, and clearly, behind the rhetoric, we don’t matter much.
We invariably remain ‘the other’. Not their problem really, not a thing to think about. We are alien and over ‘there’, in a box, to be avoided until something pushes us into their snide, non-disabled mindset; to make a token political gesture, to gain temporary brownie points.
I know that thankfully we do have non-disabled allies amongst our friends and families, and I wondered recently if we could do something akin to what Harvey Milk did for gay rights. I was incredibly inspired by the film, in the way he thought outside the box.
Is there an equivalent of ‘outing’ for us as crips, with our allies, that would make a point!? To re-establish that we are connected to families and friends, embedded within society, we are part of it and contribute to it in myriad ways from our vibrant and unique arts scene to the fact that we can challenge old ideas about ways to live. We’ve always been overlooked and now it’s worse. We’re burdens, we’re tragedies, we’re tabloid tainted scroungers. We are inconveniences who cost a lot of ‘public’ money (a public we are not part of). The tired, tired clichés go on and on.
I’m not psychologically fit to go on many demos; but I know I can take these thoughts into my work with passion. And that is what I am doing now, with every beat of my heart.
Let’s rally. Let’s get political and personal. Bring it on.
I'm pulling my guilty face as I write this because I didn't manage to blog while I was working at DadaFest, and I really wanted to share this amazing experience. I've read the blog by Tanya, the reviews, and comments by Colin and echo the sentiments. This felt historic and it was a huge privileged to be there. Yet what a whirlwind, what an awesome frenzy. I loved every minute, even the exhausting ones.
My participation in DadaFest happened despite the odds. Earlier in the year my extreme mental distress had me trapped in a fog of tears and futility. I thought I'd missed my chance, and wasn't especially worthy of one. Somehow I muddled through with help from super friends and colleagues, did some proposals, and was offered work at DadaFest in the end.
I was at the happy launch night, ready for an early start the following day modelling for lovely Tanya Raabe once more. It was quite a thrill to pose under the awesome R.Evolve installation in the Bluecoat, and see people gazing at it, turning the cubes. It was especially funny if people caught my eye and realised then that it was me, one of the naked models they had been peering at.
With some to-ing and fro-ing on the train, London-Liverpool, I was at DadaFest for almost 12 days in total. My work began with being one of the models for The Three Graces for Tanya's life class. This was a moving and empowering event. Fellow model Julia Dean-Richards has written a poignant poem about this on DAO's DaDaFest review pages.
I loved what Tanya did with us, including the silhouette piece, in which we stood against a wall, set up with a paper, to capture our unique shapes. The class included people who had never drawn life models before, including Kath Duncan, a creative from Australia, who I was to work with later. The Guardian have a photo of Tanya working on this piece, in their DaDaFest Gallery.
My next job was with the burlesque project 'Criptease', in which six women had been brought together, mostly through the efforts of Liz Carr, to work with the queen of New York burlesque, Jo Weldon and her partner Jonny Porkpie. Three solid days of crazy glitz and glam rehearsals resulted in an open showing on Sunday 28th November. Each of us presented a 3-4 minute piece, exploring our own take on stripping. I went from dowdy, splinted and bored, to an Arabian shimmying dancer, stripped by the Genie (Jonny), who popped from the lamp. Of course, I had to end with some fast cheeky tassel twirling on my breasts - which the audience seemed to like!
In tandem with the Criptease work, I was also doing a 'Bed-In' performance on the Saturday. This event was to commemorate John and Yoko's peace protest, and other artists included Julie McNamara and The Feral Four. I did some story telling, recalling how certain events in my life had coincided with times of conflict and unrest. Two were most memorable; firstly that of being in a hospital bed when the Russians invaded Afghanistan in 1979. How us teenage girls feared a nuclear war! The second was the day of the invasion of Iraq by the West, which happened to be the day my book 'Desires' was officially released, thus wiping out many of my planned interviews. All I can say is – no comment.
I ended my Bed-In with a protest song I'd written in some panic the night before as time was incredibly tight - set to the tune of Yellow Submarine - hopefully I can supply a link soon. It was a powerful moment for me to hear the public joining in on the chorus:
"What do we think of Cameron and Clegg?
They'd rather we were dead
So I'll protest from this bed..."
Part two tomorrow as I am being very naughty now by staying up too late. There'll be trouble if I can't wake up bright and bouncy.