exciting news: Threads of Empire

The University of Nottingham Weston Gallery at Lakeside Arts Centre will be hosting an exhibition from April 12th called ‘Threads of Empire: rule and resistance in colonial India.’,

see http://www.lakesidearts.org.uk/exhibitions/event/3467/threads-of-empire-rule-and-resistance-in-colonial-india-c1740-1840.html

curated by Dr Onni Gust [who writes about gender and Empire and women travellers of the 17 and 1800s see footnote ^] with RA and Phd student, Ibtisam Ahmed, who writes interestingly about Utopia and Empire, including on gender [see+]. They have brought together some very interesting archive pieces, letters, lists, reports of revolt..all with a common link of clothing/ costume/ cultural markers that I find fascinating. When Onni suggested I put together a proposal for a response piece with fellow textile artists I was really excited and energised.Β  After some discussion with my friends Pauline Edwards and P. Chezharb, we decided to form an artist collective called Infinite Threads and submit our vision of a triptych responding individually and collectively to the archive materials. Yesterday we heard we had been accepted and won a small grant for materials and expenses and a stipend, totalling Β£1,500! Great news! To give you some context, my last joint exhibition cost Β£450 to install at a private gallery with NO support for materials… happy rollie* dance!!


Now here’s the thing about being an artist with chronic illness – a turnaround of Feb 1st to April 12th is very daunting nowadays… because once I’d read the archive materials shared with us, I had a design float into my mind that would be a personal challenge. Nothing like keeping it interesting πŸ˜‰ I’ve been working towards blending fabric collage into a form of painting for a while, and here is an opportunity to create a ‘jump’ piece where I do that πŸ™‚ I started making machine cords and then patchwork for different layers in my piece a few weeks ago, and was so eager to start, holding back has been very hard…


So I had a very strong commitment to making this piece for a few reasons – and I think you need that as an artist, because you certainly don’t do it for the money πŸ˜‰ We had some group discussions about how we felt individually, what material was most interesting to us and any initial visions of how we’d work – there has to be a lot of flex at this point, as one of the things we three share as mixed media artists specialising in textiles [we all have City and Guilds textile works training as well as art skills/ training] is that touching the fabric changes so much. The feel of muslin changes when it is dyed, the fold, the fall, the heft… so much art now ignores how what we touch, what we feel, influences our making. Art is not just cerebral, it has heart and guts, juice, energy… brainwork is one part, but to a textile or mixed media artist, or sculptor and many painters, only one..


I like working with colour blending, creating volume by tearing cloth, putting thread and fibre to work create new fabrics, working with shadows and silhouettes. I tend to stay abstract and trust my process, absorbing lots of visual and a fair bit of textual research so that when my hands start making, there is something my brain/psyche wishes to ‘download’ into the materials in hand. Intensive contact and co-operation between hand, brain and fabric creates interesting work, better than if I actively designed in a more cerebral way, imposing a concept on the materials, subjugating them.


Pauline dreams her way in, working with text or an image that seizes her attention, allowing a lot of responses to arise and then working down into them as she applies dye or paint, tranfers chosen text, and finally storms the canvas with her machine loaded with threads galore… she once worked 18 hours straight round at my house when she was making a commissioned quilt to celebrate the 105+ minority communities of Nottingham… the piece stretched from my [empty!] fireplace to the back of the sofa, over 10′ square.


P. Chezharb creates wonderful painterly surfaces using Procion dyes, and then adds mixed media to them. They are creating some of the fabrics we are using, and then their own part of the triptych will focus on their response to the letter describing a British woman’s visit to the local dignitary’s harem from 1742, and the struggle to end sati [suttee, the burning of widows on a husband’s funeral pyre] which still occasionally occurred even at the end of the 20th Century.


I’m going to post more as our works emerge, and explain more of our backgrounds – between us, we have ancestors and recent relatives who were forced to move by slavery, pogrom, persecution by faith, the Highland Clearances, an Asian experience of leaving Tanzania for Britain, the Windrush migration from Jamaica… we are interested in where the intersections of freedom of choice and freedom within circumstance fall, what we can make as message, protest or affirmation for ourselves and our communities of choice and circumstance…when we can make beauty, and when ugly is part of a necessary truth.

*rollator, a seat on wheels I push to help to help me walk [33% less effort] and then sit on as frequently as necessary, which is pretty often.

^ Dr Onni Gust , current research : Home and Exile in the British Imperial Imagination focuses on ideas of “home” and “exile” in the published and unpublished writings of a network of European-imperial thinkers, looking at how their gendered performances of belonging reconfigured the meaning of nation and Europe.


+’Clothing the Other: The Use of Fashion in Pursuit of a British Imperial Utopia’ by IbtisamAhmed




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 πŸ˜‰ meanwhile a 5m ethernet cable from the Β£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 πŸ˜‰ ] 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…

somewhere else

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 πŸ™‚


Best Intentions

Sometimes I feel like my life reads like the old poem ‘For want of a nail, the shoe was lost..’ I was quite looking forward to running through all my distraction pain respites… instead, l am just distracted! The router has been targeted by malware and the company sent out instructions how to re-start it safely. Excellent, except that the Windows 10 laptop shies like a skittish horse at the least thing, so l have now been locked out for a month from lots of photos and files, because the cursor has frozen. I’ve had a very bad chest infection since xmas day so my quiet retreat time where I would gird my loins and fight the dragon has in fact been a time of psychadelic travelling at top fever with bizarre and interesting dreams… but no tackling delinquent laptops. I am coping using my Windows 7 though it drops twice a day as it can’t cope with Flash adverts [?] and l have to keep stopping the program… my mantra of ‘I am an artist, I can do this’ stutters to a halt when it comes to computer issues, as you will have realised… I am far better than I was at computer trouble, I would literally weep even a couple of years ago, but now I include it in my pacing, and take any computer problem very slowly. I have 2 laptops and the 7 is fine for most stuff and the keyboard is much more ergonomically laid out than the 10, so gradually I have become comfortable [too comfortable?] with shrugging and leaving it for another day.


There’s a personality shift most of us with chronic illness have to accomplish, whether we want to or not… how well we do it can determine a lot of self esteem issues as we settle into the long haul. I used to be a whirlwind of efficiency and output, unless brought low by agoraphobia or PTSD symptoms. I staved a lot of those symptoms off by overworking though, so unlearning all that, learning how to present myself in a way I could stomach as a person of good intentions but now unguaranteed reliability was not comfortable, at all. I was brought up that your word is your bond, and instantly understood the Quaker/Friends position that swearing on a Bible in court is unnecessary – your common word should be as true as your highest oath. Hearing fights on the street on the council estates where really often a parent would swear “on my baby’s head” would make me wince, as so often it was clear it was a lie, and what does that say about how you feel towards the child? Anyway, any perceived slight on my integrity goes down like a lead balloon and can make me steam from 0 – 60 in temper! So how to become gracefully unreliable?


I have just hurt someone’s feelings by being unrealistically optimistic, so this is very much on my mind. Disabled people often have contrary needs, that cannot be reconciled. No one is to blame when blind people benefit from bumpy pavements and chronic pain people are in agony over them… well that’s not true, but it’s city planners who need to set up a code for righthand bumps, lefthand smooth or something, not the two groups with mutually exclusive needs. I have had friends who are asthmatic before, but this new friend needed the window open – as someone who avoids draughts like the plague I had to think for 3 minutes to even remember a window that would open – this was a new one on me. They also needed the gas fire low. Trying to be supportive in that dreadfully unsettling week before Xmas I had them to visit twice, with the result that my right leg neuralgia has now gone from a very slow growing pain patch in the middle of my thight, to a hip to knee Tazer shock, let’s roll in broken glass and see how you like that festival of pain. Damn… the acupuncture/chiropractor has basically said he thinks that’s irreversible, once it makes a new pathway, you have to work to not trigger the pain ever again. Bad words hover above this paragraph, little blue devils with pitchforks, grrrr…


This goes two ways, most people think of the ‘helper’ giving attention, but over the years I have done a lot of listening /attention giving and one of the most frustrating responses I get, that is a complete red light, is when the ‘helpee’ does not pay attention! When someone wants to wallow in memories of a happy past, it’s very understandable and easy to feel compassion for that loss and the energy needed to build anew. Hopefully that past life has the seeds of the new lifeΒ  in it – eg bereavement, the life AFTER, not without, how do we make daily connection with the best of that life together to fuel the new life; losing a job, how do you go about making the best new work opportunity you can etc etc.

The new situation I was presented with was someone nostalgic for what sounded… um… unrewarding/ shallow/ money driven/ fashion label driven/ snobbery and mockery of anyone not in the clique. Errr, picture me a chameleon on tartan πŸ˜€ Never again will I boast I can find the positive in anything!! Turning in my relentless optimist badge now πŸ˜€ Oh my.. I felt terribly sad because this person is very depressed at the moment, but I couldn’t find anything to pick out as a guide for the next stage, at least nothing that landed at all well. I discovered I have very little tolerance for people who want everything done for them and no interest in helping others. My compassion turned to irritation pretty fast when I realised that as I had been trying to help, I was now being blamed for having no answers… Lesson for me: be careful about saying stuff that sounds like a promise… extra-ordinary rules may apply and then you’re up a gum tree.


I’m aware my boundaries have vastly improved because of two circumstances: becoming an artist, and becoming disabled. I have no tolerance for people I perceive as stealing my art energy or raining on my creativity parade – or anyone else’s to be fair, be sure you can do better before mocking someone near me when they are doing their best, and even then be prepared for the query, ‘why do you have to bring them low to make you enough?’

I have weeded out or trained anyone round me – or gratefully relaxed into their excellent boundaries around disability/ pacing – and I have a great circle of friends now. Partly because anything less can’t work for very long, with so many spoonies in the circle, we have great tolerance and affection for each other’s needs and set things up so there’s a lot of flexibility and understanding of contrary needs and taking turns and pacing and the wellbeing and well-intentionedness/ integrity of all.

Even with good intentions, you can mess up, and I have a bit, that ‘no good deed goes unpunished’ feeling… but I feel I might have really learned a good lesson this time on accepting my limitations, and the need to look before I leap. Shared values make for strong mutual support, even if you have contrary needs; contrary values make it very hard to make anything. Here’s to a year of good intentions though – I travel hopefully, and hope you can too πŸ™‚







remedies and respites 1/2

Looking back, I find I haven’t written a post on the oxygen therapy that has been making such a difference for me – partly because I have been out doing things probably!! I thought it might be useful for anyone considering what might help them cope with a chronic illness if I shared how I choose what works for me – because the MOST important thing I can share is: it is different for everyone.

Please don’t despair if you are having your worst year – a lot of people are, the general atmosphere [Tories winning the election, disability benefit disasters,Β  Brexit disaster for the economy] has been grim, even though we had a hot summer – suits me, but not everyone, friends with migraines were down and out, pollen allergies ditto and CRPS peeps found the heat hard.. now we’re on for a cold winter, which should hopefully kill some of the germs lurking, but sets neuralgic pain off bigtime.. that’s why I’m writing this, actually, the pain in my leg is spiking and the pain killers aren’t doing anything so I need a distraction…

I divide my health management into remedies and respites – respites are distraction activities and also affirmation activities, reminding me who I am and why I keep taking the remedies πŸ˜‰



I am very lucky in that certain medications work very well for me [my heart aches for Jay who has worse pain and no/very few painkillers] and after a year lost to tweaking meds and trying ineffective drugs, be aware it can take a long time to get this right for the unique being that is YOU. Reading any Fibromyalgia discussion thread will make you realise one woman’s lifesaver sends another into a crash… remember that, next time the doctor struggles to get the right one for you – they are trying, we’re just all different, very VERY different in how we respond.

CHIROPRACTICΒ  My life kind of revolves in fortnights – because that’s when I see a chiropractor. I am incredibly lucky as my late husband and I used to swap art and organic, biodynamic produce from my allotment for his and then our treatment, and when Andy died, I broke 2 ribs and my collarbone and basically everything changed in what I could do. I was diagnosed with fibromyalgia 15 months later, so they all seem bundled up to me. Anyway, I made a superb pair of quilts for the chiropractor to say thank you and since then he has been treating me with no barter [I am an interesting patient πŸ˜‰ always be the most interesting patient you can, all kinds of good comes from it πŸ˜€ ] and as he manages the practice, he sees me once a month and does this amazing neck unlock that means I see clearer and feel less pain for at least a week, like sometimes only Gabapentin and no Dihydocodeine!! Yay!! The other chiropractor sees me the other fortnight – I do take him a bag of baked/cooked goodies cos I really appreciate him adding me to his list and he eats stuff I can cook for. [I used to do catering, so making more is easy for me] Anyway, he gives me 5 mins of acupuncture on my neck and the activator [a sort of gun that sends air in pulses and makes your muscles etc shift] on my back ribs [ow!!]Β  and collarbones [yowwww!!] Yes, it hurts, for a few seconds, but oooh, the pain relief afterwards..and it has this side effect – I feel ridiculously happy/ good natured/ positive!!! I’m already a bit that way, I’m a relentless optimist, but wow, the treatment really helps.


This brings me to a significant point – managing MOOD can be as important as managing most other symptoms put together. I don’t mean insulting mind over matter stuff from the woo woo merchants, to whom I feel such anger when they insult people in huge pain by suggesting some chanting…but if you can feel the least bit positive, hopeful, constructive, peaceful or content, it really helps cope with the damage that chronic pain causes, the grief for the life you lost, the friends you have to disappoint, the missed opportunities, the tiredness, all that…

It gets really important to weed out activities and people who don’t get it – they will drive you round the twist. Some can be sent reminders that links to chanting sites are NOT helpful and an allies 101 post sent for THEM to read. Some, like in-laws, can be trickier, your own family even more so. I have no advice for that, as I estranged myself from my family of origin when it was a choice of my sanity or their denial. Daoist ‘bad thing, good thing’ – I see so many comments from people struggling with hateful attitudes from blood relatives…what has worked for me in general is to set boundaries, to coach people how to help me and to pay for services that would be awkward to ask for. Where do I get my confidence?Β  Well, we are the EXPERTS on what works for us. If you have just been diagnosed, believe me, noticing or keeping a diary for a few weeks will get you clear what tires you out/ brings on pain very quickly. Can be useful to show disbelievers btw! Also, I grew up in a dysfunctional family [bad thing/good thing again] so decided to learn how to raise myself right.. lots of books, meetings and thousands of therapy hours under that bridge πŸ˜€


OXYGEN THERAPY IΒ  read this article


– and it convinced me to try oxygen – not at the rate in the study, as I wouldn’t be able to afford it and it would have required giving up other therapies I regard as essential. I found out that there was a local MS Centre offering Oxygen treatmentΒ  [check here for yourself http://www.msntc.org.uk/ ] and that they offered a free trial – I was VERY worried about being locked in under pressure for 90 minutes, as agoraphobia is no fun for me, or if I lost it, my cellmates πŸ˜‰ The trial went well, and although I have had one blip [I’m also allergic to Vicks VaporRub and Olbas oil but forget to warn people in the summer] I managed to attend fortnightly for a couple of months and then took a break and now go weekly. I get lifts [thanks Onni!] which saves me Β£10+ each way, phew! I find it hard to be in the chamber that long [agoraphobia] and in a chair/upright that long [backache] and the noise of the masks/oxygen and the pressurization sets off my tinnitus and I get more nightmares [PTSD releases as the neural pathways re-open, I guess?]Β  however, despite all that, it is STILL worth it because although I come back and sleep a few hours, when I wake up I am more mobile and my sleep pattern tends to be better for a few days [except for nightmares] and my strength/ stamina is much better. My fibro fog has diminished and I can write a long blogpost again πŸ˜‰ I can think through an art project or design a garment without feeling exhausted. I still get very tired if I then have to communicate that to someone else, but I was getting tired talking to myself :O I can manage more in one day again and I have surprised Eleanor a few times this summer popping in to Knit Nottingham – look no wheels!! though I then sink gratefully into a chair πŸ˜€ I manage my time in the chamber very carefully and warn people I am a fidget as other people can of course be tense too. I took knitting at first, but it is very hard to see through my glasses wearing the mask [think big fighter pilot style, not dainty hospital] so I have to take them off. Sewing patchwork turns out to be perfect, I can finish a rosette [7 hexagons] and maybe start another and if the music is good and I know a majority of the other divers [there are 7 seats and 2 wheelchair spaces, all in the size of a big lift!] then I will even be quite relaxed at some points. I know people who can’t do it because each individual symptom is too bad for them, Keith got very bad leg cramps from sitting upright that long, he’s quite tall too, so holding his legs in was hard too.. so it may not suit you, but it is something the doctors won’t mention that could help, and a free trial will give you some idea. Our MS Oxygen Centre also has a monthly ME/Fibro support group meeting and a gym and other professionals you can book in with for tailored Physio and Reflexology, each Centre is slightly different, so worth checking out. I’ve met some lovely people there too, and if you are considering a special diet, you will get support as most people with MS or cancer are on one or another, leading to some very interesting chats πŸ™‚


THERAPY/ COUNSELLING it is really invaluable to have a place you can vent how crap this is. Choose your therapist carefully if you are paying! If you have been assigned one, the CBT [cognitive behaviour therapists] peeps are great for strategies, rubbish on feeling your feelings when it is about chronic situations. They CAN help with how to tell Auntie Maud to F*ck off without swearing though πŸ˜‰ a pain relief support person may offer a mixture of CBT and listening and a Person-Centred or Client-Centred/Rogerian therapist will work with you, where you are, no judgement. You can even ask for no feedback with some, though to be honest, hearing someone agree how bloody hard it is really helps with backbone when it comes to facing up to energy vampires. I again am very lucky, I have had some very crap therapists and some very good ones. My current therapist really gets it, because she has been there. EMPATHY NOT SYMPATHY. People mean well but this is not like that time they had flu, not even like when they had glandular fever… it’s worse, it’s affecting every area of your life. You deserve the best you can afford, though training up a student can work well, they are often very interested and will read around the issues rather than thinking they know how to handle your life.. sigh…Above all, if you don’t like your therapist or feel uncomfortable/ silenced in any way, stop. Find a new one. They may try to persuade you, at your expense, to work through the difficulty. No. Life is too short and your energy is too precious to waste teaching people who should know better. If they offer a free session, well, it could be worth it, they are showing good will and respect, so there is something to build on.

Personal Assistants/ Professional Carers are also people to only work with if you feel comfortable, if you have any choice whatsoever. I have 2 wonderful helps, both of whom have taken a certain amount of training and me learning to accomodate them – Penny doesn’t do heights, cobwebs are manageable with a cornice brush, lightbulbs, ask someone else πŸ˜€Β  Cherise, well, onions make her cry for ages!! However, they both have hearts of gold, respect I am an artist and have different priorities and honour those. One previous help wanted me to use fake Cath Kidston tins for everything in the kitchen – how about NO!! I pay them Β£10/hour and I feel Β£35 per week is well spent for having food prepared or brought in, a lovely clean flat, shopping from a half dozen places cheaper than supermarkets and taxis to get there and the SPOONS… the sheer energy it takes to go to more than one place without a sit down for an hour somewhere in the middle, even a cafe is too noisy/demanding to recover energy in, unless it is very quiet..


MEDICATIONS – this is probably what you were expecting for remedies πŸ˜‰ I take Citalopram [keeping my anxiety disorder low definitely helps manage pain] Gabapentin 900mg daily works well for me, this varies enormously among fibro-peeps, including people unable to tolerate it all and Dihydrocodeine up to 180mg daily, depending on how the chiropractic cycle is helping me. I still get pain that makes me cry, sometimes the sharp pain in my leg takes me completely by surprise and would knock me over if I didn’t have the stick and/or rollator. It gets worse if I sit upright or use my sewing machine a lot, so I do things like swap leg for the foot pedal and lie down every 20 minutes, frustrating when I’m enjoying myself, but yelping with pain is no fun either..

WALKING AIDS – since I started Oxygen Therapy I can sometimes manage with only a stick – indeed I impressed the manager with my turn of speed so much on Monday she asked if I really need it πŸ™‚ unfortunately yes, I’m great first thing and for a few yards, toiling round a big shop though..not so much! Mostly I use a rollator with a seat, I’m now on my second [thanks Vron!!] as the brakes on my first one keep going. A rollator is great because you are still walking, but ergonomically it uses less energy as the wheels give you some momentum, and confidence-wise it’s unbeatable, because the minute you need to sit down you can, and the cushion and back support mean I can manage even a picnic in the park with friends for over an hour πŸ™‚ I’m very bad for loading the basket up on my way to the bus stop though, so end up too tired on the bus home. Pacing can always be improved! I regard taxis as a walking aid too, often taking a cab for the first leg of the day to save myself energy until I have ‘warmed up’.


Special Diets – well, everyone is very different in this area, I tried Fit for Life years ago and it did help enormously with candida symptoms, migraines and IBS, so I have some recipes left over from that and general principles – use olive oil and live yoghurt regularly, if possible, daily. However, a day without caffeine simply doesn’t happen for me, and if I don’t stay awake enough to eat and take meds then I end up in agony at night… so personally, I have one or two cups of caffeinated coffee a day to ensure some energy, however borrowed, and then I make up big bottles of squash to make sure I get the 6 pints to 5 litres the chiropractor recommends. The water in my flat tastes disgusting so lemon squash it is, NAS, which a lot of people can’t have, homemade would be better, but I can’t cut a lemon in half, grrr. I’m a vegetarian and I feel very sad if I don’t have what I call vegetable platter and my husband called ‘veg and more veg’ [he was veggie too, but in that chili/curry/ spiced mush way] every few days… broccoli, yum!! I am supposed to avoid Savoy cabbage, and hate aubergines and sprouts, but baked potato and salad or steamed veg make me happy, veg risotto, stirfry and noodles, as long as I am getting enough veg I know my bowels will be happy – and when you take as many painkillers as I do, that is very important – and enough cheese and eggs to keep my D-lyscine levels happy, then most stuff will tick along ok. I eat bread and chocolate and lots of other things people say to give up, but personally, when I have, it has not made any appreciable difference. Others find differently, so it is important to experiment and find out what works for you and to learn to shrug off others’ enthusiastic fervour for their new wonder diet… I tend to say over and over again, ‘I’m so pleased that’s working for you’, because I am, though IΒ  can normally tell within 2 sentences it wouldn’t work for me, but I’m 52 on Saturday and have tried lots of alternatives… and nothing works on a ‘born again’ seeking converts except living longer πŸ˜‰ But honour the individual unless they are on your last nerve in which case chew them out, they need to learn the signs of a woman on the edge {anyone remember Whoopi Goldberg in Jumping Jack Flash?! teehee} For repeat offenders you HAVE to put up with, then interrupt with ‘Oh I have to tell you about coffee enemas!’ etc etc.

At the end of the day, it is always about finding what works for you, and honouring your own priorities, maintaining the activities that remind you who you are, modifying them to your illness, but trying to keep the taste alive, to feed your sense of self.

Think Again: Being Human 2016

An exciting opportunity came my way and luckily I had the spoons to respond! [Viva Oxygen Therapy!!] Have you heard of Theodore Zeldin? He’s a very special person πŸ™‚


sorry this is such a rubbish photo, but it was taken by candlelight πŸ˜€ that’s a commissioned cowl in his hand, made by Singing Bird Artist πŸ˜‰ oh my, what an honour. You can find lots about Theodore Zeldin online, his short biography is here:


and his books are available from all good bookstores, as they say. Personally I think he has contributed so much to intersectional thinking by extending the way ‘respectable’ history researchers and professors can expand into political zones and make the voices of ‘ordinary’ people shine through. That he then champions a method of peace-making through conversation, an unfolding of understanding by breaking down stereotypes and having people respond not react to the person in front of them, perhaps from a group they had biased thoughts about, oh, this is Nobel Peace Prize stuff in my book…

He is here in Nottingham both to launch the Being Human Festival 2016 [many other venues across Britain, see http://beinghumanfestival.org/event/conversation-dinner/ for the event where the photo was taken, many events also took place at Contemporary, where some Black History events took pride of place ❀ ] and the Nottingham Portraits project, where a city will be revealed by the views of its citizens, many more events planned for that!

So, what was Singing Bird doing there? Well, you know I’m a textile and fibre artist and work as a process artist, incorporating time and site specific details… Amber Forrest contacted me through Knit Nottingham, who suggested me as a knitter, who though disabled, would be very comfortable knitting during an event to commemorate it in some way. Thanks Eleanor, I owe you πŸ˜‰ After an excited phone conversation and meet up with the lovely Amber who did so much [thanks again Amber] to make sure I was comfortable and my agoraphobia and fibromyalgic needs were met on the night, I was primed. Knit a hat, no a cowl, for a man who has pioneered such exciting techniques to open people’s minds and show them more is possible! This is my joy in action πŸ™‚


This is a man who wears suits a lot – that’s what professionally active historians of 80+ wear, but I noticed in photos often has his shirt collar open, no hat and no tie. Aha! A cowl might be useful then, particularly when travelling. Amber had found the yarn above, a navy with white thread running through, which turns out to be recycled glass fibres, and get this, it glows in the dark!! How cool is that! I immediately felt how like a pin stripe it looked, like those suits… and having thought about how he has worked to bring out hidden sides of people, I thought of natural colours, a rainbow maybe, no, better, a sunset, with colours reflected in the sea, all the ripples he has made in the world, shimmering reflections taken on their own wave out into the world and the waves he has met and with which he has rolled, how much further he goes than you’d expect from the pinstripe… So I prepared for the event by knitting the ‘pinstripe’ side and starting the sea and sunset, with short lengths of yarns prepped to allow many elements, reflecting the diverse and various people expected to the event at Jamie Oliver’s Italian restaurant.



I arrived at the event and was seated with some help [bar stools and sticks don’t go!] introduced to some lovely people, then escorted upstairs [plenty of disabled people came to the event, but they all had to be ambulatory, and those stairs with cold brass handrails were no fun to come down]Β  to be able to choose where I wanted to sit. I smiled, remembering my late husband, as I chose the back corner where you could see 4 doors, but hide a weapon at my right side – yes, classic ninja/agoraphobic out but stressed!! He always knew where I would sit, and as a martial artist found it very funny, because I’m also a pacifist. πŸ˜‰

There were speeches, from the head of Humanities at the University of Nottingham, about the Being Human Festivals and their intentions [improving community integration and access] and from Amber introducing the Nottingham Portraits and MUSE project, and Theodore Zeldin then spoke on how to use the Menu of Conversation we were offered to guide the process. He advised how to avoid traumatic topics if you needed to, but still speak of things important to your life.. it was an amazing list and very interesting… only one thing jarred.. the use of “both sexes”. Theodore has written some great stuff on improving communication between men and women and works with his wife [they have joint copyright on some ideas/processes] so understands the huge need there is for this work.

However, it is 2016, and we do now know there are far more sexes/gender orientations present in our communities, I have several trans friends, some happily transitioned, some at the beginning of their process, but most of my closest trans friends are non-binary, and I have 2 cis friends who also feel they identify more with genderfluid orientations. What is commonplace to me doesn’t seem to have reached Theodore, but I hope someone will draw his intention to this lapse in language, because I don’t feel any lack of diversity in his approach… I will include it in feedback to the Menu process forms and if I am part of the spinoff events MUSE intends, I will definitely raise it, and suggest sticking an amendment over the top. [I am torn between eco awareness and trans ally on that, far better to have new forms, but how many have been printed already??]



Overall I was very pleased to see a diversity of people there in terms of race and culture and disability, I met at least 2 gay men, spotted some lesbians and doubt I was the only bi person there… there were a lot of white academic types, but then they were there as helpers, so like the wait staff created another group making it slightly hard to get a sense of true proportions. One University guy made a gaffe, but it turned out well, as he casually said he had been hoping to meet some homeless people – silence from 4 of us, and then a refuge project guy spoke up about varieties of homelessness and to support him I said, hmm, yes, I had been 20 minutes away from having no key to a place of my own, flat sitting for a friend while unsafe at my own place [house sharer was letting in violent neighbour angry I had helped her partner leave… sigh] was this close enough to give him an idea? Lovely project guy immediately says ‘Twinnies!’ and goes for a fistbump and handshake! The other two joined in and it turned out we had all been in precarious positions, the woman next to me making that very good point about how many paycheques most people are away from the street if they lose their home. The Uni guy looked a bit embarrassed but got over it and joined in and heard about the project in Beeston. Sorry I didn’t get people’sΒ  names, but knitting takes two hands, actually it takes three when you get your work out and find you have lost a long needle in the taxi!!! I spent a flustered time figuring out how to knit in smaller sections at a time with many dropped stitches being sorted by candlelight [omg] as every other row took all 3 of the short needles from my mitts project… and then some… and BREATHE!!


My main conversation partner of the evening was a joy to meet! She was full of anger and righteous indignation and an edge of despair about Trump and Brexit and we talked non-stop!! I told her I am a possibilitarian and relentless optimist [at least when I have the right painkillers!!] and how I felt the working class had been abandoned when the first Council houses were sold off, and then when things like the Trade Unions, which had begun to diversify, black leaders in the TGWU [Transport General Workers] and women getting senior positions in the FireFighter’s Union, were pushed out of the Labour Party and the spin doctors let in, and the training and development side of the unions and the Labour Party stopped. I was never a Labour Party member, but I knew loads of Labour and various flavour Communists from being a socialist feminist with the National Assembly of Women… well I was the token anarcha-feminist πŸ˜€ [some of the working class women were very doubtful when I joined, but were won over by my ability to make profits on the catering to fund speakers for International Women’s Day] These were mainly women who had become politicized by the Miner’s Strike, strikes over working conditions, by meeting or being refugees and feminists in teaching or Council work. It makes for a different energy, less despair, more backbone when the shit hit the fan, and because this ISN’T the pit collapsing on 200 men in your village/town, a relief it isn’t worse. Although it is very very frightening…


The rise of the alt-right/ white supremacists seems to have started with Brexit, risen with Trump and if Marine Le Pen gets in in France… ffs… the recent event in Spain with Franco praised and the Nazi salute being offered to a Catholic priest – omg, omg… this is very, very frightening. Or is it? This was here before, but underground.. now it has surfaced and like a particularly bulging spot, it can be tackled and all that pus can run away. Before, Britain First and other despicables could deny their Nazi roots, now they are gloating, out and proud. And they are sickening the middle way-ers who very naively thought they could vote Ukip and it would only be black suits, not blood on the streets… if the second referendum comes through, I think enough lies have been proved, enough nastiness has been shown that with more canvassing and talking to lost-in-the-muddle types, we could get a very different result.

There is a pause in which we have time to organize against white supremacism, already Muslims and Jews have acted to make a joint organization to defend religious rights, which is amazing.. I have seen Jewish Voices for Peace making common cause with Black Muslims via Facebook through supporting Black Lives Matter demos over the summer and a couple of days after Trump’s election, this amazing announcement of the new organization. I had tears of joy… may this feed back, may this help those American Jews who do support the sending of military aid to Israel stop and instead build a programme of mutual understanding and send peacemaking volunteers to Israel/Palestine…



But back to the event, celebrating thinking again, meeting and talking and responding, not reacting… there was such a buzz, such good energy in the room… I woke up the next day early and full of positivity, and managed to start clutterclearing my studio! That’s a win! I am meeting Amaya for a cuppa at the weekend and we will talk more about the ideas thrown up, she has great energy, skills and education and empowerment and I hope we will be able to come up with some ideas to help gather the resources of our individual networks and enrol them in creating more connections…at the least, hanging out with likeminded friends is good for your mental health! more win, more hope, more possibility webs spreading into the world! It has to be good.


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.Β  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.


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.


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.Β  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.


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

To be a survivor and make art isΒ  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?



midnight ramblings

This is not very coherent, it started as a Facebook status and wouldn’t stop!

I can just about read again now, clearly, without losing the thread of an argument, which I credit the oxygen treatment with restoring, and so I have lots of half chewed thoughts about the past years of terrible Con/Dem government and now worse Tory gov and Labour party wrangles about what party they want to be, and what we actually need in Britain, in the world…and then I saw a link to an Independent story by Samuel Osborne about the Empire’s worst atrocities


and realised I had filled in that poll, obviously to anyone who follows me! as someone who thinks the Empire was a terrible mass failing in humanity, comparable to the Holocaust… but I am apparently in a minority, so here is what I say when I have to discuss empire:


The boneheaded arrogance of the British Empire caused so much damage, India/Pakistan, Israel/Palestine, the transAtlantic slave trade, the theft of antiquities, the crushing of indigenous peoples… ‘manifest destiny’ is normally applied to the ‘American’ Dream, but really the Normans conquering England, then Wales, seemed to be the start of the pattern of greed no longer needing concrete reasons to continue being greedy.

As soon as one group has stolen more than its fair share, it fears losing those ill-gotten gains. The enemies made by all these illegal/ immoral acts must be denied the right to educate or organise… and then several hundred years later, here we are, in a mess where so much is owed, but the greediest of the greedy have stockpiled their hoard off anyone’s shores in non-existent tax havens, and the common people of the UK have barely any infrastructure left with the transport all private except for oh, the expensive roadbuilding and maintenance bill; the healthcare system being undermined and sold off to the highest bribe; the education system set up to provide poorly skilled, low esteemed people without information or the reasoning skills to apply them widely; media owned by the new overlords of consumerist society, pushing useless products at people conditioned to ignore their true needs but to self medicate with whatever suits the market… grrrrr…

How do we unmake all this? not by ignoring those most hurt and damaged by this machine of destruction, orΒ  the choice of profit over nature [people and environment] but by remembering and choosing slowly and carefully who to vote for, what to buy, what to make, what to grow, who to support, who to understand as still hostaged to that machine and needing education and support to disentangle them… media and information sharing are easier than ever before, but reasoning skills and political literacy in the UK and US are lower than ever before… I really hope Corbyn wins the Labour leadership and the PLP who are no longer socialists storm off, so a real People’s party can emerge, a phoenix that burns off the corruption and business-as-usual approach of millionaire MPs. We need Corbyn and Mhairi Black’s fire and conviction and community… we need more too, all the activists who could have been MPs had the system not been stacked against them, imagine Benjamin Zephaniah not pissing on Parliament, but principalling it, being a Black Rod who would shut up the hawhaws and baying pigs… stop the complacency of landowners/ biggest thieves and turn the DWP fraud investigators on the tax evaders, stop fracking and mining and worst of all nuclear and raise more turbines…

Oh, so many more things… but start with remembering, Normans and Saxons made an enormous amount of the mess, Catholic dominion amassed wealth that could fund enormous projects to rejuvenation community in Europe where so many seek sanctuary, and that only understanding we have always been diverse, the people who walked over the Ice Age plain to what became an island were a mixture, and traded all over the world when the seas rose… there is a hidden history of dealing fairly with others before the Norman values took hold, and it can return and inform us, the mixed bag on an island falling off Europe, very vulnerable to climate change, but known for taking on huge challenges… only this time, how about restitution of fairness, commitment to nature before profit? An Empire in reverse, where we went and learned, shut our mouths and listened with both ears, asked humbly for clarification and advice when we did not understand, and changed not others, but ourselves and our dealings?

It can never be fair because the Empire took so many hostages, uprooted and changed forever so many things, so how do make the new ‘we’ truly inclusive? How can power not corrupt? How can a benign dictator [thinking fictional Vetinari here, not Mao etc] be better than a run-for-profit democracy… how do we re-educate, re shape education so it engages people, lets them explore the full history of things the current system wants hidden… What would restitution look like? Jubilee [the forgiving of all ‘Third’ World debts, in understanding that the Empire stole more first] is a start, emptying the museums of all stolen goods and returning to culture of origin, where it survived, and otherwise deciding with closest kin where it should now be held…Banning slave trade, zero hour contracts, companies using the benefits system to fund their employees [Tesco etc]Β  changing child labour in the textile and fashion industry to free schooling plus 2 hours FAIRLY paid work which would keep the family afloat…Organic farming, fair farming, understanding of heritage farming where sheep manage a landscape etc etc… so many things…

What can the millions of individuals do to become a movement for change?

I’ve just re-started Blessed Unrest by Paul Hawken, so more may follow this πŸ˜‰

midnight ramblings…