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.

stop and start again

CN: PTSD, ‘domestic’ violence to women, hearing voices

Lots of ways to read that – one meaning is that the internet wifi has gone down irretrievably and my one hour callback from the tech dept arranged by customer services after the first fail [tsk tsk] still hasn’t come 9 days later.. my new router from a different company should arrive sooner than that though 😉 meanwhile a 5m ethernet cable from the £shop is making internet access possible, though not comfortable.

I’ve had an emotional break-apart/through too, I have had a painful experience in taking on too much and having to excuse myself… I was tagged to The Women’s Quilt, a very brave endeavour, where there will be a square for each of the 589 women in Britain known to have been killed by a violent partner, father, other male relative during the period 2009 – 2015. That’s 2 a week, in a relatively small country. I volunteered to make some squares, though finding out we had to do the research ourselves on the women was where I should have dropped out. I assumed there would have been a collaboration with the friends or next of kin over what they would like a woman remembered for. Having to read up about 8 women and a 16 year old girl’s horribly violent deaths and try and find any source of information about the woman other than as the victim was very difficult.. every newspaper covered the number of stabwounds etc very few said ANYTHING about the woman. The Facebook page became filled with heart rending stories as more people making squares shared how terrible the deaths were but also how horrible the gaps are… The admins were careful to tell people to protect themselves and only take on what they could, but the constant reminders via Fbk notifications were upsetting – yes I turned off the notifications, it takes a couple of days to take effect… I managed to make 4 squares, two of which are very plain because there just wasn’t any personal information. One woman was about to go swimming so I made her a mermaid

another was the concert pianist Natalia Strelchenko, so I found some music printed on fabric for her [ it’s The Holly and the Ivy, but needs must..]

I was really surprised how much this experience shook me… I think to be fair if I wasn’t already upset by my brother-in-law dying [the oldest and last of the three brothers, my poor mother- and sister-in-law] and his wife now being seriously ill in hospital, my therapist of the last 11/12 years having suddenly being diagnosed with cancer again and having to stop work, a friend being diagnosed with non-Hodgkins lymphoma… then it might have been less upsetting. Combined with my personal griefs, the Trumpland woes and Brexit suicidal xenophobia… I just felt very ‘precarious’, a word I use when I feel the PTSDs are running amok and I can barely hang on to the wild horse of survival… I’ve made it, and learnt – yet again – that pacing is some tricky shit.

I feel I need to withdraw from Facebook and use it much more carefully. I signed up as an artist and then Facebook made me have a personal account and a ‘business’ account. It’s a useful tool and a tyrannical master… my friends have a broad range of politics, so my home/feed is full of bad news with the occasional positive…no one means to be negative, but that’s a lot to hold your self and daily purpose against. While I was feeling ‘haunted’ by the details of the deaths, mixed in with life stories of others and my own experiences of violence and helplessness, I felt bombarded by all the bad news in the world, how the right are rising and fascism may overtake Europe and the US… and as the feelings of uselessness rose, I was rescued by the reminder [yes, voices in my head 😉 ] that you can only do your OWN work, that in the face of death and destruction, all I can and must do is make art, however I can. It was amazingly reassuring…

I can’t only make art of course, but if I accept the loving reminders of politically aware friends like Uditi Shane and Jennifer Moore, then my art IS enough of a protest to make… and the rest of the time I need more mental space, I need to have more space to experiment and be playful. Because life sends enough challenges without the constant flood of negativity the news etc brings. In my own words, “I am one 7 billionth of the problem – sometimes it’s ok to only be one 7 millionth of the solution”. I usually laugh as I say it, because it can be very easy today to feel we aren’t doing enough, and putting that perspective on it changes everything. I’m pretty sure even on a bad day I manage to do my share, because my ingrained habits of thrift, recycling, buying fairtrade, vegetarianism and giving to the foodbanks etc do that… During my internet hiccups, I didn’t miss Facebook very much at all – because I could connect for long enough to message friends but not long enough for general browsing or reading the feed, which I had come to dread. I read books, sewed towards the Empire piece, caught up with some dyeing projects, slept off the adrenalin rushes… and now I’m starting again, trying to follow Olitski’s excellent advice 🙂

 

saying thank you

CONTENT WARNING: PTSD, STATE VIOLENCE, FLASHBACKS ETC

Like most of you, I have been following the news from Calais and Lesvos with great gratitude to those brave volunteers who are out there helping. They know what they are giving up in the moment, but I find myself worried at what they may be storing up… PTSD is horrible, and I’ve been suffering with it for over 30 years now. I saw activists being kicked down a spiral staircase to the cellars at a blockaded conference centre by the West German police and 2 other women joined me in smashing the double glazed window, showering glass all over the stairs. I’m a follower of NVDA, non-violent direct action and even careful about property, so it had actually been an accident, we were beating a rhythm on the window, saw the glass moving and stopped – which caused it to shatter…Later the [activist] guy on the stairs told me how scary it had been facing being kicked down and how after the glass showered down the police had to pick their own way…and stopped beating the guys up until they were in the cellar 😦 A week later he was still seeing the stairs in flashes and nursing a broken thumb, nose, and 2 broken ribs. 10 years later I was still seeing and ‘feeling’ the policemen with guns pressing us in on each other in our human chain. I still can’t cope with loud shouting, crowds, and men with guns.. I have a lot of other reasons to have PTSD, but this is the closest to what I fear for the brave volunteers, doing good but acquiring unwanted memories which will haunt for years, helping people, but also pulling dead bodies from the water, burying babies..seeing French police teargas people already traumatized before they even set off on the escape to ‘safety’ as they’d hoped and deserved…

 

 

Last week Worldwide Tribe  https://mydonate.bt.com/charities/theworldwidetribe mentioned on their Facebook page how useful sewing machines would be. Now I have a midarm /semi-industrial sewing machine that I got in a sale, got a donation towards from a friend making a professional commission and have used for a couple of quilts, see the Lakelight Quilt slideshow [button on top right] and then haven’t even been able to lift, never mind use it for 2 years… So I’ve contacted the Tribe and luckily they can collect it 🙂 I’m so happy about this!

 

And then it struck me, ooh, a chance to get a quilt to the volunteers without diverting from refugee support… so this last weekend I have been working hard and got the quilt top pinned to a fleece back by a friend [thanks Onni!] so now I can take the quilting slowly – hopefully!

At 1.5m/5′ square I can manage it on my ordinary machine, 20 minutes at a time…

Thinking about what has comforted me most in my journey with PTSD, being outside in nature, by the sea or moving water for choice, gardening, colour and art, spring have all played their part, knowing that someone cares, and wants to help… So I got out the spring/ crocus coloured fabrics I won on eBay a couple of weeks ago, and set to 🙂 My corners don’t meet cos my squares turned into oblongs somewhere along the way, but I doubt this will be a problem…being washable does, so a fleece backing and no wadding means it’s cosy without being too heavy for a machine.

Comfort quilts are traditionally given to victims of crime, the bereaved.. but I think the same principle applies, a sense of how the world works, that it ought to be more fair than it is, is what gets broken when trauma is induced. When there isn’t enough acknowledgement of how one has been affected and feelings are pushed down to keep going… that’s when trauma becomes PTSD… so that someone cared enough to make a quilt for the volunteers may strike them as odd, it’s the refugees who need help…but maybe somewhere that seed of care and love has been sown, that their needs should be acknowledged too, that I am grateful for what they are giving, and hundreds more send love with it…

 

 

Heart truths

“The root of the word courage  is cor – the Latin word for heart.  In one of its earliest forms, the word courage had a very different definition than it does today. Courage originally meant ‘To speak one’s mind by telling all one’s heart.’ Over time, this definition has changed, and, today, courage is more synonymous with being heroic. Heroics is important and we certainly need heroes, but I think we’ve lost touch with the idea that speaking honestly and openly about who we are, about what we’re feeling, and about our experiences (good and bad) is the definition of courage. Heroics is often about putting our life on the line. Ordinary courage is about putting our vulnerability on the line. In today’s world, that’s pretty extraordinary.” -Dr. Brene Brown

TRIGGER WARNINGS: Discussion of hate speech, hate acts, internet abuse, bullying and oppression, sexual abuse, violence of most kinds.

Apology to dyslexics, I hardly ever post this many words with no photos, and the backdrop gets really hard for this much reading 😦

I was on BBC Radio Nottingham on National protest against ATOS and the WCA [work capability assessment] Day (Feb 19th). After being taunted by a Tory MP that I was “to be congratulated on my ability to organize the local protest and perhaps I had a future in Events Planning?” I responded by explaining what an experienced organizer I had been before becoming ill and now doubly disabled, and then I heard myself say: “This is a shadow of what I’ve done, I’m a shadow of who I used to be.”

And that went very deep for me.

In so many ways I am more than I used to be, so many less too…but this expression that all the colour had drained out of me…ouch! That hurt!

Since becoming interested in being part of the Nottingham protest I have had to endure a lot of trolling, betrayal, backstabbing and mean-mindedness. I find hate speech ineffective and alienating, and some levels of it are triggering for me, and I know, many others. As I choose my facebook contacts pretty carefully, I’d always been able to avoid a lot. Now I am able to ‘unfriend’ people and pages I have been struggling with, I can feel the relief.

I find it disturbing how demeaning speech is insidiously becoming acceptable in campaigning, and is promoted by many anarchist groups. I have become a target to be discredited because I objected to swastikas and Nazi imagery on posters, gory images and what I consider to be sexualising  and rape culture speech – I really can’t figure out how to tell you the terms I mean without saying them and risking triggering lots of other survivors, and I don’t want to do that…

Suffice it to say that when I was accused of “playing the victim” and needed to pull myself together, stop being offended by words and be a survivor who tackled the ‘real thing’…I found myself furious, as an ex-campaigner who has done a ton of awareness raising work, and also deeply sad.

This was from a survivor saying they were fine with the term and so was everyone else. Where is their connection to their authentic self? Where is the permission to be vulnerable AND effective?

Don’t worry, I did point out I existed despite them trying to negate me! And I know, even if I was the only one, it would be wrong. I have done that work. I can be vulnerable AND effective. But how is it to be around people who lack respect for that? Triggering, wounding, unsafe, draining. Greyness. Shadowed.

Language matters. Language opens and closes doors. I write how I like on my blog, but I use ‘crystal mark/simple English as much as I can when campaigning. Language creates permission and gives presence and frames of reference within which we examine what we want to build and how we want to build it. How does a person who has been abused rebuild and keep their respect when terms of abuse are used to humiliate? Non-physical but pointed insults attacking the right to acceptance and pride in sexuality, race, gender self-definition, difference of ability, choice of work, whatever the bully chooses to demean, these all create spaces where respect for the person is blurred. And once that has gone, then abuse is possible and condoned, and protected from reporting by the targeted individual or groups.

Thus the rise in use of terms relating to sexual abuse is very worrying, survivors of violence (whether random or targeted) and sexual abuse, bullying, hate crimes and hate speech are definitely a majority in industrialised countries. And yet survivors of abuse are not respected the way we need to be.

Remembering intersectionality, these circles of oppression overlap and isolate, with vocational and financial opportunity offsetting for some, but further disadvantaging others. Class is now becoming a really tangled issue  with the complication of working and unemployed members of each class holding very different experiences of how these systems oppress them : a wealthy Hindu family who work in skilled manual trades, but who have no idea how desperate a sanctioned disabled but originally middle class white person in dispute with the Department of Work and Pensions might be…And a victim of abuse in the wealthy family might still be at greater suicide risk than the person enduring sanctions, if they are very sure they will win their appeal (eg ex solicitor, knows the loophole to argue).

It’s so complex – but so simple: anyone, anywhere deserves to be treated with respect. And if they are being oppressive, their mind will not be changed by being insulted, it will have to relax to let new information in.

The great Audre Lorde said it best:

“For the master’s tools will never dismantle the master’s house. They may allow us to temporarily beat him at his own game, but they will never enable us to bring about genuine change. Racism and homophobia are real conditions of all our lives in this place and time. I urge each one of us here to reach down into that deep place of knowledge inside herself and touch that terror and loathing of any difference that lives here. See whose face it wears. Then the personal as the political can begin to illuminate all our choices.”

My response to all that has happened and all I feel is to create a space where inclusive, creative, compassionate campaigning can take place without hate speech.

So I have! 😉

An unfortunate truth  is I have to be prepared to check out every contact seeking to join the new group, and proofread every post/comment for at least the first month. I know from friends how draining being an admin of a Facebook group is, I now know how grey I feel after reading pages of hate pretending to be effective invitations to people to change their minds, hearts and actions. I want to be colourful again! I don’t want arguments! Spits dummy on floor!

But I have to honour my hurt, and the truth that if I want a disabled- friendly, non ‘hating’ group where anyone can rely on finding a peaceful, positive, constructive place to create small acts of protest, kindness and change…then it will take that. The shadow will shorten as a particular group of activists loses interest, the burden is already lightened by finding so many amazing things to post, my personal page has long been a relay point for loads of inspiration 🙂 Any of you who read Sustainable Man will know how many brilliant initiatives are out there.

I have called it anyone everywhere inspired by this wonderful quote from Martin Luther King:

“Injustice anywhere is a threat to justice everywhere. We are caught in an inescapable network of mutuality, tied in a single garment of destiny.

and also to reinforce the reasoning behind my refusal to bow down to the bullies: as a disabled person, I have the right to be allowed safe space at a protest about disability benefits. Many people require safe spaces to be able to make our positive and valuable contributions. We are not weak, we are strong when we declare we will work in positive ways, refusing to be divided against the others oppressed by the systems in power. Being inclusive matters, honouring ourselves, staying focused on being the change we want to see matters … speaking our heart truths… being vulnerable AND effective

https://www.facebook.com/groups/1394938094103956/