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.
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.
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?