recovery and resistance

The election result was, for me, a bit of a shock. I’d felt if we could persuade Labour to centre their program on saving the NHS, no one in their right mind would forfeit the NHS for Brexit, given that Brexit is such a stupid idea anyway. So, the failure to smash through the tabloids’ smokescreens for the oligarchs is why we woke up to Labour strongholds toppling to Leavers, and by the time we vote next Johnson’s crew will have stitched up the right to peaceful assembly and protest, online fact checking etc etc.

It felt devastating. If I hadn’t just started a new relationship I’m not sure I would have been able to come up with a survival strategy. I’m always at my best when thinking fast how to save someone else from despair, and the combination of my PIP assessment on the following Monday, the feeling of my disbelieving anger and grief at England’s [and to some extent Wales’s] stupidity and then fear for the beloved made me make a paradigm shift.

So, my plan, formed in a flash, but now honed by a fortnight of thought, research, consultation is that we will move to Scotland, and hopefully make a safer home there. We will use our existing connections to make a home that hopefully will feel full of possibility rather than an exile. We will build a network of support for those still in far right England, lobby the Scottish Assembly to support the abandoned and vulnerable people of the ever growing underclass, host visitors and people on retreat, have fundraisers and other solidarity and awareness raising events.

During that fortnight, Johnson has announced cutting support for the disabled, a ‘crackdown’ on the Roma and other travellers, parts of the NHS being sold off. The chronically ill, the disabled, LGBTQ, people from minority ethnic groups are all expendable, as are refugees, migrants and people from the EU who never experienced the hostility well known to the Windrush generation, the Bengalis who came across from Uganda, anyone from Pakistan… During that fortnight newspapers have published articles of advice for people rendered suicidal by the election result – does that not point to how dangerous the decisions are? Like the Jews after Kristalnacht, I feel the writing is on the wall, and I can read it. I am also in a position to respond, we are agreed on the need to respond, to recover and resist, once we are in a place of safety.

 

It will take at least 6 months to prepare, not least because the beloved is waiting [again] to hear when her gender confirmation surgery operation will take place. She has been struggling with increasing dysphoria as years of waiting have built up, and one of her worst fears is that with the hostile environment confirmed for another election term, and the NHS to be privatised, the operation will be held up again, or worse cancelled. Most transgender people experience extreme stress via the gatekeepering the Gender Clinics impose, and at first I felt that the system was just poorly organised, but lately it really does seem to take little account of how desperate people become – pre-op suicide rates are high, post-op suicide rates very low, the surgery helps enormously with everyday dysphoria [and it is everyday, every visit to the toilet, bathroom, shower, every time someone stares, shouts, harasses. Sometimes during what should be happy times…

 

The time of preparation for her operation and recuperation are also a time for building the plan, making links, building connections, winding down commitments here and clutterclearing. Once upon a time I could boast that all my possessions went in the back of a hatchback car, with a friend driving and a cat in her carrier on my knee in the front. Now… now, I have a crowded one bedroom flat to reduce to the needed, useful and beautiful. I’ve done it before, it can actually be very pleasing to release unused and ignored items to new lives with other people, and I’ve started with the easiest – books 🙂 Once I have the new camera/ memory card reader/ new laptop set up sorted I can photograph fabrics for ebay, which is a handy way of fundraising too. As the Chinese saying has it, Great enterprises begin with small steps.

To everyone on the Gregorian calendar, Happy New Year! May 2020 bring better vision, a better idea of where to look for inspiration as we lick our wounds, better dreams and plans.

kindness during the election

COMPASSION AND COMPROMISE:

the Tories have to go: because there is no perfect party atm [has there ever been?] compromises will have to be made. Some of those compromises will be made by people traumatised by the choice, and yesterday I was sharply reminded of how much hurt that may cause. We need to be very gentle with each other, in a time when trolling and sabotaging division are the norm. Remembering to acknowledge pain and choicelessness within the choices is going to be very important. If Labour is the only answer to ending fake austerity then my transgender friends have to vote for candidates who barely acknowledge their existence; my Jewish friends have to vote for a party that professes compassion but won’t clarify its policies to make anti-Jewishness a cause for expulsion; my pagan and eco-centred friends have to vote for a party that fails to honour rural communities’ needs; my friends of colour have to vote for a party that hasn’t put its weight behind the ending of discriminatory stop and search and killing chokeholds when PoC are arrested; my European friends have to watch as I vote for a party that isn’t brave enough to say Brexit is an economic mistake and the xenophobia of those misguided/ misinformed enough to vote for it is hateful and instead bravely state that the UK social care structure, the NHS, and the agriculture industries now rely on foreign workers, some of whom have settled and regarded the UK as their home, just as the Windrush generation before them did. I am disabled and have to ignore all those concerns if I want to save my own life and the lives of thousands of others affected by the DWP death-inducing policies.

I am very lucky: my candidate is Nadia Whittome who has very publicly stated the need for change in social care, the NHS, and the ending of the hostile environment; the need for change in the Labour Party’s handling of anti-semitism; who has co-written Labour’s Green Deal policy. She will, to our pride and shame [it is 2019 !] be our first MP of colour in the East Midlands. She has stood on picket lines and spoken at protests, she has shown solidarity and strong allyship to those wounded by the inhumane policies of the Tories. She works in hate crime awareness, and understands how Brexit promotes xenophobia. I don’t have to compromise this time when I vote [last time I had to vote for Chris Leslie, who refused to express support for the anti-ATOS/DWP policies protest I was involved in. If I was in Broxtowe, the candidate supports Brexit… which I consider economic suicide as well as xenophobia in action.]

I will try to remember not every one’s candidate has made such clear choices for what is right and fair and will be good for the environment as well as the economy, and their anxieties are very real. It is traumatising to have to choose for the hypothetical greater good, when the personal danger is so obvious. I once had to run towards an attacker with a knife to be able to escape down a side street: it’s probably one of the hardest things I’ve ever done. That is what it may feel like for people expressing their fears, how to trust that if Labour form the next government, then hopefully their policies will quickly change to create a cohesive Britain representing all intersections under threat – except billionaires fleeing taxes. 😉 those I hope to see expelled or made to pay their way, instead of being subsidised by the state that refuses to demand workers get a living wage with fair hours and working conditions in return for their labour. That’s where Labour started, down the pit with one grandfather, on Cable Street defending another. A century later, we must defend the Labour message of solidarity with those under threat, we must end the hostile environment, we must seek to build a fairer country, in an EU which recognises the needs of asylum seekers and fights fascism.

Nadia Whittome’s website is down right now, so here is her Facebook:

https://www.facebook.com/nadiawhittome/

Reclaiming our Futures Disabled People’s Manifesto:

https://www.rofa.org.uk/disabled-peoples-manifesto-2019/?fbclid=IwAR24xrv2PEtr-7mEVpfKI5aDYLbHSS3GkzFRWbNyvV7JG0Nfi76tG5HZFow

stepping out

“argue for your limitations – sure enough, they’re yours” from Richard Bach’s Illusions, the Adventures of a Reluctant Messiah

It’s nearly a year since I posted, and life has been full of interest [as in, ‘may you live in interesting times’] including most recently mumps for the second time and falling 4 weeks ago, resulting in a head injury I feel lucky to have survived.

Yesterday I had one of those therapy sessions where you empty a bowl of spaghetti out and both of you pause and go Hmmm… I have been slogging away on how to come out of the space I have felt backed into, whereby all my art impulses are dissolving before they hit the ground running, as they used to. Art was my go-to process, was the ‘reason I floss my teeth” as I put it back in 2000, the ‘answer’ to life’s questions after 50 years of traumatic incidents…

Today I have woken up and seen a community art event I feel attracted to attend and while thinking over a design I could submit to a related open, a new thought arose. I have been joking [sorry, gallows humour!] that if nearly fracturing my skull is what it takes to shake my ideas up, then I need an intervention 😛

How do I get out of this corner I have painted myself into?

I take a step forward. The paint is dry, it’s safe to move now. I’m allowed to be in a different place now.

This looks like the simplistic neuro-linguistic programming/ New Age woo woo I feel like hurling a brick at as a person disabled by complex PTSD and fibromyalgia. So if you’re in that place, I apologise. I don’t quite know how to express what the difference might be, except that I was really stuck and now something has shifted.

 

hanging on in

***spoonies feel free to skip this, it links but it’s not essential 😛

I want Parliament to have a revolution now it’s been pro-rogued by those Brexit venture pirates… I want to turn things around, to fight back against the big bullies trashing the planet and turning economics into those disgusting rat overpopulation experiments where they end up eating each other… I want individuals to take back some power and start facing down the shadowy puppeteers – I want us to run with scissors and snip snip snap at them till THEY run away…

In the Opinium surveys about Brexit, there are frequently questions about how you feel about your political opponents, and I find this very difficult to answer. Yes, I feel infuriated by the sheer stubborn refusal of suicidal Brexiteers among the working class who have no idea what kind of economic collapse it has caused before it even takes effect. These people have been lied to for years and – on some level – they chose to believe the tabloid lies rather than some common sense that all these great projects in their communities are funded by EU money, that the people who come and pick cabbages in the snow when they wouldn’t should perhaps be entitled to equal standing, that the nurses and bus drivers of the Windrush generation were entitled to want happy, healthy, fulfilling work for their children and it is amazing given the racism of the UK that so many BAME people have jobs other people envy and guess what they f*cking worked for them, so stop being envious, get your finger out and fight for better schools for your children and better news services for all of us and DON’T F*CKING FALL FOR DIVIDE AND RULE!!! And breathe… on one level, I am so angry I feel contemptuous of anyone who falls for the tabloid lies, on another I feel deeply sad that Thatcher tore up an education system that was creating opportunities for so many more and all the damage caused when you privilege unlimited growth economics to make what was an uneven playing field into a war zone…and breathe!… and then I am aware of my own privilege that despite a traumatic childhood I was still given the tools to be aware of injustice and fight for equality of opportunity [just not mine…] but how that has kept me safe from those capitalist myths… so how do I feel about people who weren’t? oof, tricky, it depends how much they embraced the racism etc… because most of them are also victims, it just is an ugly truth that when society is divided, some will follow the bullies… 

***and breathe***

 

I want the House of Commons MPs to admit Brexit is unworkable and no MP can both endorse it and claim to want a positive economic future for the vast majority of the British public. That’s a big ask for people trained by an abusive system to lie, who have painted themselves into a corner by following party interests instead of national interests…

And something about their moment of opportunity has maybe shifted the background enough for me to admit there is also a place where I, memyselfI have let go and allowed myself to be painted into the corner. Maybe it’s just that the paint has dried? Maybe I can just step out? “Just” being one of those words that are written in flame for the disabled community… “just” nip to your surgery and ask… “just” fill in this 50 page form to claim the benefits your National Insurance should entitle you to if you have a medical history… “just” rise from your sickbed/ wheelchair/ depression and f*cking fly…

Or maybe the fall has rattled my frontal lobe enough to shake some thinking loose? I do feel odd since the fall, in a way that reminds me of previous incidents where I could have died, but didn’t, so what do you do now?

I remember running across a zebra crossing and a lorry coming out of nowhere and my skirt touching the radiator as I ran, but somehow I made it to the pavement. This was back when I was 19 and a student into disarmament and development politics… and I stood and held on to the belisha beacon [crossing light for non-UK readers!] getting my breath back and everyone on the street had stopped because we all thought I wouldn’t make it… and I thought what do I do now? What’s the best possible thing I could do with this life I unexpectedly still have? And as I got my breath back, I thought about the non-violent direct action protest I had been on my way to, and thought, yes! Amazing that what I had been doing was what I wanted to do! So I went and built a shanty shack outside the student union and talked to passers by and put my tiny contribution into the enormous pot of positivity that people around the world were filling, to try and help the world be a fairer place…

 

 

What do I do with this moment now? Take the step that looks and feels right for me, right now.

So I have taken a step: I have booked myself onto the Creative Conversation event at Nottingham New Art Exchange next week. I will take another step by posting this. I will take another step by getting out my brown and blue ‘ingredients’ and some aromatic bark and some beachcombings and see what my hands want to do.

And breathe…

 

 

 

surfacing

CW: medication switch struggles, depression, loss of self

Well, I have been very low and it has taken me a really long time to pull round ‘enough’ to want to post again. Most of the trouble has been connected to coming off Citalopram after 10 years, and switching onto Duloxetine. They are both anti-depressants with strong anti-anxiety effects, and Duloxetine is also supposed to help with pain management, though so far it has not had that effect for me, but the two friends with chronic pain I know taking it who feel a benefit are on far higher doses. I’ve also had an allergy to the treatment for the allergy to the treatment for my eye trouble… sigh. Itchy eyes and blurred eyesight are not conducive to creativity and it’s been over 6 months now. Another problem has been missing my continuity people, my oldest friend has been away for 6 months and I really miss her wisdom and listening. My therapist of the last 10 years died last spring, and I didn’t get closure as she was suddenly rushed to hospital. I’d like to think I can weather stuff like this, but apparently not, or maybe not when it all falls together with a GP demanding I follow treatments that are traumatic for me, while trialling 4 therapists in 15 months to replace lovely Sharon.

I now have a new therapist, a MAN!! [I’ve only ever seen women for 27 years] who is so far impressing me though the usual drawback is occurring – Sharon and I had worked out that a 90 minute session worked really well in allowing me time to trace through triggers and issues in my complex PTSDs and time to re-surface and face the world again, as an agoraphobic going home after delving deep. I’ve now been told by various people [who I found tbh pretty inadequate at their jobs as counsellors, therapists and supervisors] that this was inappropriate, but you know what, it worked. I have atypical agoraphobia in that I can go places and do things others find difficult, but can sometimes find no feeling of safety anywhere, including my home. I challenge myself to stay part of the world, to make art, to be at some level an activist, to not be silenced by my experiences and their perpetrators. 50 minutes to name, explore, trace, untangle and figure out strategies is impossible, without then also the making safe… at least I only have to get a taxi home now and as I am very good friends with 1 of the drivers, and liked by all the others in the small company I use, I can feel safe enough to get home and crash, if necessary. Before I had to take 2 buses home, and change in the busy city centre.  So maybe it only needs to be a 2 minute turnaround? It irritates me that what I know works best for my long term balance and self care is unavailable on my limited budget, because of the Government cuts to disability benefits. Cuts? Yes, they are frozen, and the cost of living isn’t. A bus ticket costs £1.20/ 33% more than it did 10 years ago, a loaf of sliced bread 25p- 60p more, depending what kind you get.

I went to a really good conference last Friday and Saturday and have come out with lots of thoughts and questions, having met some lovely people – potentially 3 new friends! – and while it was an extravagance of spoons/energy, I really needed a bit of a shake-up, as the GP had weighed me down with appointments and bad diagnoses, so I was feeling like my life had no fun, and I was becoming very dull to be around. Though my kind friends have never hinted at this, I’ve been aware of having to ask for extra listening, and of course it becomes that spoonie anxiety nightmare – will I know when enough is too much? Will I wake up one day with only paid helpers coming round? Luckily most of my friends are intersectional in their politics, and often have experience of these issues themselves, but with no therapy holding the space, it has been very hard, and I have cried with friends and others who really didn’t expect it, as their question was a straw that broke my back. Two friends in particular stepped up to the plate, and I am very grateful to them. I have always ‘kept my face up’ as part of my self-defence, so this became upsetting in its own little spiral.

The single hardest day was when I woke up and thought about my artmaking, and just felt the thought settle that there was no point to it. At this point I normally joke, but actually it was very frightening. I have always managed a lot of my anxiety by doing and when I am doing enough, I can then feel safe to be. I grew up with no acceptance of my right to be myself – I was instructed from an early age to be my mother’s comfort and to do whatever it took to cheer her up. One of my earliest memories is of her bursting into tears when my father came home from work, and of feeling I had failed. That’s not a feeling a 4 year old should have. I was also told I wasn’t allowed to make art or study art at various points, and it has taken years and a really supportive tutor on the Access course I attended to break the block, ‘be selfish’ and attend to my own needs by making. My oldest friend is my absolute go-to champion for my making, and after 18 years of her friendship, I thought I was pretty solid on this. I have had solo shows and made some wonderful pieces, had people tell me how much a piece meant to them, but still… I hit that place of feeling the world has no need of my art. And it has been very hard to hold, because if my art is not needed, then I am not needed. I could feel that here was a ‘wonderful opportunity’ to heal some of that bad scripting, and replace it with solid assertion of my right as a human being to just be.

Without a therapist, missing my best ally/friend, feeling the general depression of all Remainers about Brexit, feeling the fear and anger of all disabled people about how the Department of Woe and Persecution is killing thousands with the Government’s blessing and the Opposition’s silence and the media’s collusion… yeah, that’s a bit of a tall order.

Instead, I am holding onto making what I can – patchwork, painting components, recently tie-dye and dressmaking. And now I have a commission for some textile art and a request for some collage art I had already planned to make as a gift for that person, and they are slowly creeping forward. I have plans for a new quilt in grey and sunshine yellow! I have bought a swimdress and am planning to go to a disabled swimming session, I have found a new doctor… I am resurfacing, feeling the sunshine on my skin, looking out in my tiny garden or on the terrace of the British Library, reading lots and thinking about things and being present. Being. Being me. Breathing, being, breathing. Phew.

lampshades and seeing the light

CONTENT WARNING: trauma, the pain of recovery, government death by DWP policies

 

Sorry that title is a pun to try and get myself to lighten up about the piece I’m trying to finish 😉

This is the part I currently like best of the work, it’s fully embellished, and is attractive to people who aren’t necessarily interested in [my] art. This gold hoop and a white one were found in the airing cupboard at this flat and work better with the main armature – a wire lampshade in a roughly goblet shape – than the wooden hoops I’d acquired.

The lampshade itself has been interesting to work with – the yarn slithers unless I anchor it and then the bare steel shows. That feels appropriate, but looks ugly. Sigh… that is actually what the work is about, the pearls and barnacles of trauma recovery. The scars and stigma, the increased awareness and gifts to the world that result.

The indented bayonet holder of the frame can stand for the permanent reshaping of your life that complex PTSD makes. The torn tissues, wounding and furred scarring that trauma leaves, however hard you ‘work’ to recover. People can be very judgemental nowadays – even bereavement is something to be medicated away, so grief at a lost self, a life of possibilities now gone gets very short shrift. Austerity Britain with this heartless Tory government is astonishingly cruel.  DPOs [disabled people’s organisations] are now estimating that as well as the 10,600 disabled/chronically and terminally ill people persecuted to death by the DWP in 2014, a further 120,000 people have died because of austerity policies, DWP sanctions, housing benefit changes, treatment of the homeless, cuts to care in homes, cuts to all kinds of medical services that support disabled people and the vulnerable. It’s heartbreaking that even Labour barely respond. There’s a thing on Facebook at the moment, ‘which Miliband meme do you most like?’ I’ve probably alienated a few people by commenting ‘where’s the ‘I don’t give a shit about the disabled’ one?’ because when I see Miliband I just think of the Opposition who didn’t oppose the Con/Dem death by DWP persecution policies. He may have cared, but he never mentioned it in the House of Commons, and I’m very sure he had weekly postbags of constituents testimony to the impact.

The long strings of beads are connected to this, they look pretty, but my experience of feeling like words/ memories were being pulled up from my guts like fishhooks or stones, from where they had been trapped in my flesh, that isn’t pretty.

I think in this piece I’m trying to express the imbalance it creates when life is a minefield of triggers, when all you want to do is make the best of what’s left, but every day is a challenge to even take all the tablets and supplements that help but don’t contain the pain, because nothing works completely on fibromyalgia pain, just as it doesn’t for cancer or arthritis, but those are respected in a way that anything connected to trauma isn’t. Maybe if you were a serving soldier, but then there is all the macho toxic masculinity that covers even the women vets, that you must ‘soldier on through’, even when you have an illness that affects every tissue, every fascia, when pain can stab at you from any direction, with no rhyme or reason. I talk a lot about my ‘bad’ leg, my hands, my collarbone, but plenty of other areas hurt, but some are not ‘socially acceptable’ to mention. Pain is a taboo topic, so pain in taboo body parts is really out of bounds.

Something I want to acknowledge is that I could have made this piece in angry colours, full of pain and the ugliness it causes. I haven’t because it would feel like drowning in the dysfunction, and my response to the PTSD I have lived with so long is to fight back with colour, with grace – a state of spiritual awareness and compassion, of openness including hope. That could be a failure, and I can see fellow sufferers wondering why, but I actually want to open some doors in the minds of those outside the experience, I want to neutralise some of the pain’s power and re-instate myself, the person living with the condition. Creating a neutral palette gives me some space as I make to keep a balance between my own needs and the needs of the piece.

 

I am very attached to the beach colours, aqua, duck egg blue, sand from off white to black, tiny particles that glisten with salt… mmm, I am drifting off to the seaside in my mind! Making 2 pieces in a row with roughly this palette has been very soothing.

I have been working on a ‘technical’ problem too, how to make pieces that express the distortion trauma creates without making them impossible to photograph! I already have intricate details getting lost in the sheer size of some pieces, so this time I am deliberately bringing some elements back closer to the main armature – the bowl of the lampshade.

 

So about that name – maybe Balancing Act? The hoops remind me of jugglers… and from some angles it looks as though they have escaped from the lampshade bowl. It carries some of the constant tension too, like tightrope walkers. Phew!

 

 

 

 

art, survivors and disability politics

CN: PTSD, RTS, physical illness/damage following abuse, SJWs disability fails

Eleanor of Knit Nottingham asked for Diversity is our Strength to be in the huge window for a month for LGBTQ Pride, and I was really happy to have it on show again. This time I made posters of the quotes I used in ‘open and shut’ as Brexit had just shocked everyone I know, and I’m pleased I did that. The piece drew a lot of comment and appreciation from passers by as well as the many customers and browsers at Knit Nottingham. However I was disappointed by the lack of response from a lot of activist friends in my wider acquaintance circle, very few made the effort to go and see the piece, even though it was on for a month.

[image: Sam helping hang the giant DNA spiralling coils and pompoms of DIOS]

Art is a really valid form of protest and being told it was unimportant compared to an event 3 minutes walk away for an ablebodied person went down very badly! It made me question how deep their understanding is of the effort that it takes to be politically active and creative as a professional level artist when you are disabled by chronic pain and fatigue. Disabled artists are regularly overlooked because our CVs seem thin – finding an accessible venue is very hard, getting the art in often even harder, and that’s assuming you could wrangle the resources of energy and capability to make any art, and manage brain fog so the art has good resolution and a powerful presence. As the piece occupied the huge window recess of Knit Nottingham, you didn’t even have to go inside to get an excellent view, and with the weather being so good the door was propped open most of the time so the posters were easily seen by taking one step inside.

 

The lack of response from supposed-to-be-allies has made me very disappointed again about the way disability issues are ignored overall by otherwise aware people, and by contrast the appreciation and support from Survivors Collective has been so valuable. I found myself silenced in a way that shocked me, I thought I was past being unable to speak up for myself or my art… but betrayal by allies is a really bad trigger for any survivor and I am no exception. The first therapist I ever saw couldn’t cope with the fact I wanted to work on my mother’s collusion more than the perpetrator’s actions… and shortened my sessions to 20 minutes and then cancelled them. Tyneside Rape Crisis later interviewed me to get evidence to dismiss her, but never apologised and crucially refused to waive the waiting list time for me to see a different therapist… talk about bruised! I was left paying for my own cab home [a significant cost at the time] in the dark, having been told they didn’t need me anymore and no, they didn’t see it as appropriate to support me in any way. I barely slept for a week with the huge waves of adrenalin from the fear, anger and hurt. It took me years to trust a therapist after that, and I still have no assumption of support from feminists or professionals [it’s a bit hard to disentangle from the aftermath of being raped by a doctor with the professionals, but there is some residue directly from the RCC fail.]

Why have I shared that story? Because when allies let me down, that is what is triggered – the feeling that even the politically aware will use me for their own ends and then abandon me when I’m no longer useful. Somehow the disabled and very particularly survivors are seen as people to at best pay lip service to, but at worst [Anonymous, I’m looking at you here] to be told to get out of the way so others can organise protests on our behalf, that we can’t attend because they are inaccessible due to noise/ violent or triggering speech/ lack speakers with awareness of the need to maintain empowerment levels/ in places without seats etc etc. Any request I made about access to the Nottingham 2014 anti-ATOS protest was met with horribly triggering speech telling me to ‘get over it’ – kind of aligning themselves with Iain Duncan Smith in my view – and in the end only intervention from a local Anon ‘leader’ calling the dogs off left me any space to make a NVDA family and disabled friendly protest space possible. Macho politicos are definitely not respected by the intersectional activists I prefer, but to my shock and hurt, the same dismissal of the importance of what I was doing prevailed. A very dear friend told me she hadn’t realised how much her lack of interest would matter ‘personally’ to me and she would remember in future.  Her personal support was very welcome, but left a gap, a place still not met, this is bigger, there is a political choice in the work, a creative act that aligns disability with the other divergences from the nonexistent ‘norm’… and where is the understanding audience of allies? Where was the support that understands and accepts art [with political quotes on photo posters even IS political] and deserves not to be dismissed as apolitical when giving reasons why visiting sometime over 5 weeks isn’t possible, or even important. It has taken me weeks to climb out of the feeling that the piece simply wasn’t good enough… [though how people who never saw it would know that??] and if Survivors hadn’t contacted me to request having it on show next year having seen a couple of photos online, it would have been much worse. Their instant grasp of the politics and the sheer exuberant beauty of the piece really, really helped.

http://www.survivorscollective.co.uk/

A discussion with them has then led to an exciting return to a piece I laid down a few years ago, Cradle for Stones, the respect and esteem from the Collective leading to a surge of energy for finishing it – knowing an audience exists for it makes a huge difference to how I feel working on it. It’s about complex PTSD, the layers upon layers that multiple incidents cause, the patterns, the keloid scarring, but also, the pearls, the friction that creates a beautiful, lustrous jewel. Crucially it’s about how all this coexists, that being a mature survivor with years of recovery doesn’t mean that the days of raw pain stop, it means you have tools and experience and can self soothe and cope. The extent of what you’re coping with varies enormously. Being a longterm survivor means there is very often a history of damage to the body, in ways those not affected can’t imagine.

YOU MAY WANT TO SKIP THIS PARAGRAPH, BODY DAMAGE DISCUSSED.

I can feel the taboos rising, how much do I share? Taboos for my own protection, but also others, the many, many others. We are all individuals, we have different scars, different areas we are bent out of shape. But also we share conditions that the professions rarely connect – yes PTSD, but fibromyalgia and the other chronic fatigue illnesses can be [Lyme’s] from a tick bite, but can more commonly be Adrenal Fatigue Syndrome.. from all the adrenalin of those recurring nightmares, panic attacks and constant anxiety. Often people are hospitalised for mental illnesses when they can’t cope, but Mental Health units are so poorly funded they are now mainly about dispensing psychiatric drugs, and very little therapeutic support is offered. Equally directly connected is self harm in the form of cutting, but abuse of alcohol, drugs and disordered eating are widespread responses. Back pain is often connected to childhood abuse, damage from broken bones sometimes untreated, likewise deafness and other head injury consequences. Damage to anus and vulva is a very taboo subject, damage to the brain is becoming easier to acknowledge – no, we’re not delusional and making false accusations, but yes our histories mean that our brain chemistry and structure were affected, and brain scans can show that, when the complexity of a survivor’s response lights up a scan where a simple/ untriggered response is very localised.  There’s so much more, STIs, unwanted pregnancy, HIV, but that’s as much as I can bear to write, and will have been far more than many can read.

 

To live with any or all of those symptoms and conditions is unfair enough. To make art with them is very draining, and needs careful pacing. There are lots of artists with chronic physical or mental illnesses or a disability facing that challenge of wanting to raise issues and start a dialogue or open some doors, making art that is demanding to make and difficult to explain, very hard to arrange showing for. To then be ignored when we make art about anything really, but particularly about diversity, inclusion, intersectionality… hmm, that’s a failure of politics, a loading of priorities that ignores our perspective, our lived experience of constant exclusion. ‘Nothing about us without us’, but nothing about us without allies either, surely? And when we’re talking broader politics, then nothing without us, because we are a vital part of humanity too.

https://vimeo.com/107396887

link to ‘Peace, the 100th Heart’ at Nottingham Friends Meeting House

To be a survivor and make art is  a gathering of energy, abilities and intention and definitely an act of speaking truth to power. Our allies need to acknowledge that. There is a privilege in being unaware of daily pain, of mental struggle to stay active against the odds. Dismissing our artwork as apolitical is a thin spiky end of a wedge that leads to all the deaths when our disability benefits or medical services are withdrawn. Showing support for a disabled artist is as important as being at a vigil, on a march, attending a meeting. The difference support can make extends much further than most people think – a gallery may look harder at its access for visitors and artists, a piece of work may go viral and bring an argument in Parliament to tipping point… but also a door may open in an ally’s head, the clunk-click of intersectional politics being the only way forward may fall into place. We are an important part of our communities, we intersect with every other intersection, why are we and our insights optional, add-on extras, to be fitted in only when convenient?

 

crazed but not broken

I’ve been feeling very odd – changing medications is no fun as many of you will know better than me. I have a history of either being absolutely fine and not minding ‘minor’ side effects or getting the most extreme, even life-threatening ones possible. An early experience with Duphaston that the dreadful GP refused to report lead me to be very wary of medication for nearly 20 years…

Then, for me, Citalopram has been nearly the best thing since sliced bread, and to be coming off it after 10 years was a little daunting. My lovely GP hoped Venlafaxine could help with the ‘phantom’ pain fibromyalgia creates and help me use less painkillers and maybe gain more mobility, and also as my mood has been understandably but increasingly low as the fibro has got worse, maybe help more than the maximum dose of Citalopram could. She wanted me to start before she left, and helped me by setting a smooth transition with no tapering [as recommended by consultants] and l’ve now taken Venlafaxine for 4 weeks.

At first it was fine, just a very dry mouth, but drinking extra was easy enough, though by the time l started craving ready salted crisps, it occurred to me that yes, you can drink too much… the lovely chiropractor reminded me to take care of my electrolyte balance as he could see and feel the difference when I went in this week. A friend cooked me a lovely lndian meal including dahl, which confused things a little, as legumes now give me gripey wind, so when l saw my ‘new’ GP I was clear I felt wretched, but wasn’t sure how to separate some of the symptoms out. She briskly told me it was too soon to tell [hmm, 3weeks+ ??] and would see me in early January meanwhile here’s another prescription. I left feeling disgruntled on top of feeling sea sick and on heavy ‘amplification effect’, a most disagreeable fibro symptom where you feel like all noises are TOO loud, all smells are chokingly invasive, everything is clashing with everything else…on top of sea sickness, it’s a peach…

The surgery/practice I go to is patient-centred by ethos, so I am planning to go see a different GP should this one remain brisk/ unhelpful/ dismissive when I go back, if it wasn’t heading for xmas [what, it’s still November?!] I would try to fight for another appointment, and I will definitely be more prepared to argue my corner. An inbox conversation with a friend in London really helped clarify some of what is bothering me, and luckily I went from the doctor to my therapist, so we worked on it there too.

 

Meanwhile, I have been struggling with no immediately engaging artwork around to help me focus and cope, and failing to make much at all as being too nauseous to eat enough to take the painkillers means there’s extra pain on top of all the other symptoms.

Creativity is the singing bird for me, and the tree feels very lonely without her… not all of this is because of the meds, some is because I have been ill now for 6 years and made many changes to my lifestyle, more meds, more help, more pacing, less everything else, from showers to walking, to seeing friends, all while dealing with bereavement and losing not just my allotment, but my ability to garden, and moving from being a painter to a mixed media/ fibre artist, because of damage to my collarbones. That’s a lot, and inevitably there are times when it feels like too much…but lately with the accumulated tiredness from living in a country currently run by entitled sociopaths who are draining money from democratic infrastructure like the NHS and National Insurance benefits, mostly for their own pockets, but also to fund missiles that can never be used… oh, my…that’s way too much…

Another week of feeling sea sick and resting/ lying flat and leaving my face on the floor [instead of keeping it up and smiling!] and being gloomy as all get out, has passed, and gradually the space made by letting all that gripe out has started to allow some more positive thoughts to hang around. I even managed to make some software help me [techno fool win!!] and start rebuilding my lost list of over 200 blogs/resources I used to have on my dead laptop. It has really helped, deciding that Venlafaxine is not for me and that going back to Citalopram is not perfect but will be a lot better than this, if I can also structure in some more…something? Acknowledgement of how hard chronic illness is? Not sure…

What has come to me so far is this, the affirmation that however damaged we may feel, we still have value, all the ones being Westminstered to death and painted as the problem in the media, we are treasure houses of experience and human in ways the pretenders are too frightened to acknowledge.

I’m researching around kintsugi again, and think this will be the key to a new direction or piece of work… my life/ sense of self/ sense of possibility has been shrinking and something wants to fight back…

We are strong in the broken places, we know how to live well, we know what matters, we can be the gold that illuminates…

Kintsugi

the Japanese art of repairing broken pottery with lacquer dusted or mixed with powdered gold, silver, or platinum, a method similar to the maki-e technique. As a philosophy it treats breakage and repair as part of the history of an object, rather than something to disguise. [Wikipedia]

Not only is there no attempt to hide the damage, but the repair is literally illuminated… a kind of physical expression of the spirit of mushin….Mushin is often literally translated as “no mind,” but carries connotations of fully existing within the moment, of non-attachment, of equanimity amid changing conditions. …The vicissitudes of existence over time, to which all humans are susceptible, could not be clearer than in the breaks, the knocks, and the shattering to which ceramic ware too is subject. This poignancy or aesthetic of existence has been known in Japan as mono no aware, a compassionate sensitivity, or perhaps identification with, [things] outside oneself.

”

— Christy Bartlett, Flickwerk: The Aesthetics of Mended Japanese Ceramics

 

 

pain and politics

 

 

I have been looking through favourite collections of quotes and seeing which I feel to work on, preferably by using Picasa to type them over an image. This takes less energy than the Letraset I sometimes use, which can be a bit stressful when it’s a long quote, as I have to guarantee keeping my focus all the way to complete success – hmm, tall order at the moment, as I am stiff and achey from pinging my intercostals dragging the bin out [reminder to self, phone the disabled bin support line!] and not the full wattage as the painkillers make me clumsy, almost dyslexic… So, ‘work with what I have, how I can’ is the mantra for this week.

I had a few difficult decisions, regarding spoon priorities… I was feeling quite shabby by the time I finally had a shower, but unless you’ve been there, you really can’t imagine how much energy taking a shower drains from your daily quota. I wanted to cut fabric and I needed to make space for the last two loads of  boxes from Flat 4 and I should have done more work on a charity application… meanwhile I was getting lots of questions put to me about arrangements, which due to fibrofog felt very hard to answer! How do we make decisions when everything feels almost equally pressing, and there simply isn’t enough energy to handle our affairs? For me, this time, asking for, accepting and rewarding/valuing the help of my community/ circle of friends. Looking for the shared gain, and trusting the boundaries. I simply couldn’t have done this a few years ago, being disabled physically is teaching me a lot…

I had been planning my move since xmas, and had enrolled a lot of friends in helping me. [I am very lucky, but I have also worked very hard on my trust issues to be able to ask, to give what I can and to be able to hear yes or no without it altering the friendship!] I also did what I could to lengthen the process and plan it, in terms of considering whose skills matched what task etc. I only had one major mistake {sorry Sam!} and friends coped with me getting a bit stressed very well. Boundaries are really important – if someone does something from obligation, it gets tiresome very fast.

It’s funny, because in Daoism the idea is to avoid choice, to be so aligned to the flow that a path seems lit before you, but one of the things I did was offer some people lots of choices and some very few! The guideline was thinking hard about what I know of how we work together, and all the skills and resources available. I have a few friends with chronic pain and/or fatigue issues, and it was one of those friends who drove a borrowed van for me, and I was trying to persuade him to take money for a takeaway [to make up the lost energy, so generously given] and he ended up persuading me I would be denying him the chance to be the capable helper! Another friend is very fit but has a dodgy leg, but more importantly has been sanctioned for missing daily signing at the Job Centre because his son was visiting and leaving a poorly 4 year old with a neighbour is not ok really…apparently he should have brought the lad to throw up on the floor, then his money wouldn’t have been stopped. Sigh. Anyway, who is helping whom? Clearly they [and many more] are all helping me. But apparently I am helping by being part of a process where a friend’s self esteem is boosted, and another gets a big box of Approved Food goodies and gleanings from my pantry, when he most needs it. A couple who have been under horrible stress from online trolls for daring to hold their heads up as a transman and a non-binary person, helped me by being the best DIY team you could ask for, and I can only hope that being practical and problem solving things like disassembly and installation made a rewarding change…another friend has helped lots with organisation and packing and being my guarantor – she is now getting my lovely bike at a very bargainaceous price, which makes us both happy… there are lots more exchanges going on, some obvious, some subtle, some barter for art has been involved too. A friend who is very ill sent me the loveliest box of treats, which helped me feel in contact when I had no internet access and then when she was having a rough time, I was able to be supportive.

‘Fair exchange is no robbery’ is a maxim I was taught very young, interdependence as part of community self-reliance as an activist and then when I read up a lot on Daoism I was given a new take on it. ‘Ming’ [sorry, no idea how this ming is pronounced] is enlightenment where the interfusion of all things becomes crystal clear in the inner vision, that we are all part of the universe, all atoms of stardust endlessly recycling in more or less aware states…

From a Daoist perspective, things like moving can be lived as a community event/ process/ happening. This time I have been privileged to experience it that way, the best of all possible outcomes for someone with chronic pain and fatigue…

All these giftings/ barters/ supports have made think hard about  how the British government/ the Conservative DWP policies are failing so badly at respecting disabled people’s role in the community. We are seen as valueless scroungers, to be removed by callous cruelty and heartless persecution. The NHS is being dismantled and services are being cut, while Tories trumpet that  disability and health issues can be ignored because we make no contribution to society. There are disabled MPs, the Prime Minister had a disabled son [for whom he claimed every benefit possible] and the minister for the DWP dropped everything for 6 months to be with his wife facing cancer. Yet all this brings no compassion – Stephen Hawking, the scientific genius, has communicated his concern that other people with Motor Neurone Disease are being left to die, we know people are being pounded into serious depression and suicide by the policies…only an election where these immoral fools are ousted will help.

And yet, in my own life, I feel more valued by my circle [more of a wobbly star!] and part of a community via the internet, than seems possible with that in the background of everyday’s choices. [Given, that were I able to apply without fear for upgraded benefits, I could have paid for the whole move…] People at the sharp end get what abundance and community are, enough is as good as a feast, and when you share, everyone has plenty. They know they are part of a whole, when they are not being beaten into the ground by the propaganda the media have been recycling straight from the Government benches, the pernicious belief that some people are worth more than others, and only some skill sets count. If you can’t feel when things are wrong, if you can’t respond to what is, because you are blinded by political expediency, you have lost your humanity. And how can they not see?

 

 

 

 

 

 

 

 

 

turning corners

Sophrosyne (n) a healthy state of mind, characterized by self control, moderation, and a deep awareness of one’s true self, and resulting in true happiness

I read this on facebook, such a lovely thing to come across…

Centering down to do more of what I want/ what is mine to contribute right now means giving up some of the many other exciting and sparkling possibilities available…there is a happy balance between total simplicity and sufficient resources to sustain an artist in many media. Finding a new main medium/ expression for my art has lead to acquiring a lot of materials that all appeal, but are not necessarily viable [certainly not in my bijou flat!]

Like most artists, I have a tendency to stockpile materials, and as an upcycling artist, the number of POSSIBLE uses I can think of for an individual bit of…tat… are distressingly many. At the height of an argument with an ex he told me I was like a disco mirror ball, to which I replied, ‘Yes, how wonderful, all those facets!’  He  shouted: IT WAS AN INSULT!

Nerts to that!

By nature I have been much more of a juggler and a marathon tasker/ up with the rocket, down with the stick/ all or nothing person and it is a revelation to become seasonal and patient, an ‘enough is as good as a feast’ person. It has grown on me gradually, first of all through agoraphobia, then Daoism, gardening, living with someone with bi-polar, but now mainly having to make a balance that will keep me able to make art at least sometimes in a day/week. Pacing is so central to my management of the pain and fatigue and  weakness of fibromyalgia, and it involves moderation, never one of my strong points till now.

Lately I have had help tackling the studio, and great progress has been made, yay!

I give to a lot of projects, so friends give to me, knowing I can channel things, but it can be very tempting, all that eyecandy! Sorting through boxes always brings a feast of ideas to mind: the trick is enjoying the ideas and letting them go, materials and all!

I am becoming increasingly comfortable with knowing a number of projects ahead and rotating between them – after a lot of work on Wasting Waste, I’ve had a spell of gardening and pink Wool against Weapons knitting, and now I want to work on something else, still for Peace Week, but a different installation, probably the ivy rootballs. I’m going on holiday on Monday [the sea, the sea!] and when I come back it would be great to have WW sorted and stored, easily accessible but not on every surface!

So I’m very pleased some more sorting happened today:

 

Zero-waste projects are 1) making strong fabric carriers for the Foodbanks to give food away in, I had a few left over from the ones I made for the Fixers stall and clearing out my work-in-progress/UFO crate has added more.

2) putting all my threads and snippets into the same place so I can make embellishers for the guerilla gardening pouches. I have some see through plastic storage jars that seem just the thing.

I bought some more see through plastic (shoe) boxes and David, who was helping, gave me some ziplock freezer bags he was clearing out, so I am sifting and sorting, and I suspect there will be a lot of boxes of those, but then, they are very handy, so this shouldn’t be a problem, hmm?

Having sorted out the pieces of the duvet cover I am almost ready to finish quilting, I was able to put unwanted cloth into the smaller shoe boxes and colour code it. This liberated a 20litre crate for Wasting Waste yarn stash, which liberated an 80litre crate  for Diversity is our Strength, which liberated the travelling bag so I can pack to go on holiday on Monday! Oh my!

I hardly ever buy fabric anymore, maybe a particular keynote colour, as I am working through the stash acquired by a few years of visiting remainder sales and friends’ clearouts…it does take having access to a large collection of fabric to acquire the huge variety of snippets I love to work with though. This is where SOPHROSYNE comes back in…I seem to have hit the point where I can balance letting go of some plans [making embellished/complex cloth floor cushions, making clothes, printing cloth] and taking on others [guerilla articulture.]

Knowing and accepting what I can do within the limits of fibromyalgia is not a straightforward thing: but then, life is never straightforward, right? Some things suit my face though – the audacity of street art, the gifting and salvage side of what I make and how I choose to share it, these are much more mainstream than they were, more impactful as I can now share them through Facebook groups. I like to be playful in my making, but I am very serious about how stepping out of expectations of what contribution (among others) people with disabling conditions can make to the idea of worth in the community. People living outside the ratrace are necessary to the w/holistics of communities, we model being and doing, not having and buying. Artists/creatives of all kinds can encourage others to think out of the box and work with what we have to make what is needed:

 

Finally though, it comes back to living with what works for me, knowing what works for me and enjoying that. Definitely a corner turned.

 

What’s in a Name?

So I’ve been interviewed 4 times in 2 months, and two of the interviewers were reluctant to accept Singing Bird as my action name. As an agoraphobic, this is an avatar that helps me be somewhere that sets off panic attacks, so their attitude lands very badly. One accepted it but his editor called it my pseudonym, my false name, and this annoyed me excessively until I thought about what I’d said during my interview with Kristina, that this is my ‘true’ name, expressing a part of me that has struggled for a long time to come out. And as the editor has no idea about that…no blame…

Interview by Kristina Lewis-Shipley for her forthcoming book on Street Artists and their handles:

KLS: Please ignore ‘SprayCan’ throughout the message, (hahaha) Ok, so the two questions are really simple:

Why did you first pick up a SprayCan? Where does your Street Name/ Pseudonym come from?

SBA: I feel the tiniest bit intimidated, but I’ll just pull my big girl panties up and speak loud 😉

The two questions you put are 30 years apart in my life, and why I feel like my life is finally making sense – a big wound has started to graft 🙂
I first made a piece of guerilla paint and fibre art in 1983, but it was a street action for peace. I was used to making peace flags for the barbed wire fences at the MoD missile sites or the Trident base at Faslane, but when I suggested doing it in Newcastle upon Tyne, the other activists were really snobby about it. They didn’t want to be accused of vandalism 😦 Luckily my best friend and my boyfriend were supportive, because on the day I was down with a stomach virus, and they had to execute the designs. I’d made pieces to hang in a tree and a piece to write on the walls and pavements in chalks, and after they’d done those, they added some of their own, which made me sooo happy 🙂
Why did I want to do it?
I dreamt it.

A lot of my art comes to me that way, now that I am an artist, but at the time I was a bit lost, my parents had refused to let me do art at A Level, they were abusive in many ways, including physical and sexual, but looking back the biggest damage was withholding my way to be in the world. How is that possible, that a parent refuses to buy their child even super cheap felt tips? And pours scorn on everything that might encourage her?
So I grew up very bent out of shape and this was my first experience of genuinely needing to make MY mark in the world, and my new people, the activists did not like it, but I did it, and when I was up again, I added to what the others had done for me – it had been made for Valentine’s Day, so it couldn’t wait…it was a message of love to the precious earth and to her humans to stop the trashing…
I loved it and one of the ‘real’ artists I knew (he could draw!) decided it WAS effective after he heard about it and we should do some street art/ performance art and we did… 😉
But it was interesting to see how flyposting was political and ok, and heartfelt messages and pictures chalked on walls, bedizeners hanging from trees…not so much…

My street name has been Singing Bird Artist SBA for five years, since my husband died and I could no longer paint, so since 2008/9. (er, long relentless optimist story, broken collarbone and ribs trying to save him, permanent damage, learning Machine Embroidery as a new skill to keep sane through staying creative…)
City and Guilds courses are REALLY tough, super structured and meticulous, I was an “interesting” student 😉 but I found myself needing to express my wild side/politics and myself more freely, more directly…

So I started with hanging freeform fibre art in bus shelters etc and public crafting/freeform crochet and leaving bedizeners/happy makers in public spaces 😉 My husband was an artist/poet and we would do this together before, we made environmental art in the woods too, so art for people to find has been important to me for a long time.

SBA was definitely a response to him dying and me having to work without his support – I have agoraphobia and can’t be out alone after dark, or in isolated places. Then I mixed in with Nottingham yarn’bombers’ for some joint blitzes. I prefer yarn ‘tagging’, cos I’m a pacifist, but I understand the excitement of saying yarnbombing, and also the backing off from the guys within graf (def NOT all, waving at you, lovely Popx!)  who are hostile to using tagging for yarn/fibre work.
I have had fibromyalgia for over 4 years now (following the neck injury) and use a rollator, so can’t action very often, but am blurring the lines where I can, I have 2 fibre art installation pieces in a gallery in London in February and they want me to make a ‘live’ piece for the private view. What they don’t know is that with the help of the friend I’ll be staying with I will yarntag across London while I’m there – coming to a railing near you, people  😉 [Due to the injuries following installation, I couldn’t actually do this, but made it into art for the Anti-ATOS/WCA protest on February 19th and Robin Hood’s Rally against Budget Cuts on March 19th 2014]

I chose to use my yarntag name as my ‘fine’ artist name (big thanks to Banksy for showing the way) so I can link the two sides, legal, illegal. It also frees me to work a different way – the art world is full of puffed up entitlement at one end and genuine heartfelt making at the other. I have struggled with writing those pompous post-modernist windy statements, and then last spring I cut through it all and declared I would only use Singingbird Artist/SBA  for ALL my art/social justice/permaculture activism. It comes from a Chinese proverb “If you keep a green tree in your heart, maybe the singing bird will come.” To me it means that if we are true to our deepest calling to make our mark in the world for what is needed (to cut through the mindless consumption junky culture capitalism demands, at the cost of the earth and all her peoples) then we each become a singing bird for those around us who need to hear that things can be different, change is possible, every *small* act counts.
Since I got my ‘right’ name, amazingly, loads of doors are opening for me, so your question about the name strikes home!

As Singingbird Artist, I make what I like, as fast as I can 😉

Which is not very fast, grrr,  I have permanent damage to the deep tissue in my hands, but all the joy that pours out into the work and the world makes me really happy. I even like it when people steal the work to take home, if it speaks to someone that much, great, I’ll make another, keep spreading the song 😉

re photo, I need to be anonymous – the Dept of Worry and Persecution will stop my disability benefits at this prioritisation of my energy to art not hoovering 😉 so I like to use this one as a thumbnail- the rollator makes the point that physically disabled people can still make art/actions 😉

Well, back to making! I have been working on the brown – blue water waste piece, some tricky freeform knitting, but first there are some garden photos to edit 🙂