Saturday morning kicked off at the Green Fish Resource Centre with the theme of Working From Within. This weekend would be about using ones own lived experience to inform ways of working.

Fellow UNIONITES from the North West gave their own local projects as examples. Hannah passionately told us about Blaze, a youth-led arts festival organisation that develops the next generation of artists and cultural producers. It was started about ten years ago by adults as an Olympic Legacy type thing, but over time it became more independently funded and led by the young people (16-25) it looks to support (I may be wrong about some of this, sorry if I am Hannah!). The young people have control over Blaze, which looks like a really awesome project. It was good to see how it started off as something that wasn’t user-led, but over time became that… it got me thinking about Recovery College (my work), as I’ve been trying to work towards making it more user-led and coproduced. Food for thought!

Gulcin then told us about her project, the North West Turkish Community Association, after feeling isolated from her culture when arriving in Manchester. From what she was telling us, what started out as a small idea blossomed into an incredible community. The NWTCA is all about the celebration and education of Turkish arts and culture, and it’s programme arises from realising the needs of that community and acting upon it. Gulcin gave the most beautiful metaphor about how she sees ‘working from within’, which has really stuck with me. It’s a Persian story called ‘The Conference of Birds’, which I’m going to attempt to explain (apologies if it’s wrong!). There were many birds within a flock and they wished to find their king. The wisest bird suggested to find the legendary king they had heard about, so thirty of them went out looking. They set out and searched for their Bird King but struggled to find him. However, as they flew together over a lake, they looked down at their reflection.. and saw that they were flying together in the shape of a bird, realising that THEY were the king they were looking for. Like starlings murmerating across the sky, the leader may change for the moment, leading the flock this way and that, until another takes the lead. It is such a great metaphor for collaboration and shared user-led leadership!

I’ve been thinking a lot about non-hierarchical leadership models lately, in the context of work (as mentioned), The Critical Fish, XR and participation in general. How things work in theory, but not in practice. Or how things could work in practice given the time and breathing space… but deadlines, pressures, lack of resources, lack of interest and red tape prevent it. It’s the source of lot of frustration for me over the last six months or so. I’ve been reading a lot about this stuff, but haven’t found an answer to it yet.

Zoe then told us about REIGN, a project where survivors of child sexual exploitation deliver lessons/workshops and raise awareness about sexual exploitation. People share their stories in making change. Zoe also wanted to talk about the Autistic Pride events she runs in Manchester but unfortunately ran out of time. Maybe next time Zoe!

We were then given a presentation by Fereshteh Mozaffari Vanani from Sheba Arts, a user-led project to empower refugees and refugee artists. She challenges the under-representation of migrant communities in the arts, and uses her experience to support other artists so refugees and migrants can present their own narratives to the world. She encourages cross-cultural dialogue – she showed us images of events where people from all backgrounds are enjoying each others cultures and it looked awesome. I really liked Fereshteh’s spirit. I related to what she said about how Refugee Art is treat with pity and sympathy, much like Disability Art.

Inga at the Greater Manchester Coalition of Disabled People was awesome – half the group went to see her over lunch, the others went to Horsfall Gallery. Inga spoke a lot about the social model of disability (vs the medical model), a cause which I feel very strongly about. She explained the difference between Impairment and Disability. Impairment is the physical issue an individual may have, such as brain damage or loss of a limb. Disability, however, is an issue rooted in other people which impose a state of disability (preventing the person from functioning). Disability is something done TO you as an individual. Disability is not a medical problem, but a social problem. We built upon the morning’s conversations by continuing to discuss the importance of language. We say ‘disabled people’, not ‘people with a disability’, as the imposition of dis-ability falls differently within each phrase. Disabled people ARE disabled by others. Inga was spot on in saying that everybody has the same needs, but how those needs are met are different for many disabled people. Again, using ‘service users’ (a term I’ve always felt uncomfortable with at work) comes with a lot of baggage too. SERVICE. USER. It’s a real patronising term and is pregnant with power imbalance, disempowering the disabled person. Also, we don’t say ‘carer’, we say ‘support worker’ or ‘personal assistant’. It sets a very different tone in terms of that power relationship, one that gives back control to the disabled person. I love how principled the GMCDP are in the way they work, how they source funds and their political education, including encouraging involvement in local politics and activism.

They’re involved with the #PeterlooProtest. There’s a public piece of art being installed, a monument, a podium, to commemorate the anniversary of the Peterloo Massacre (I’d never heard of it before, it’s horrible, read about it) and to give people a raised platform in which to protest, to say their truths, to be listened to, to exercise their right to free speech. However, this podium is not accessible to many disabled people! It has a load of stairs and is definitely designed with an able person in mind. It’s disgusting, especially when you consider the context.

This conversation got me thinking a lot about my relationship with my own disability, and how language is used in the NHS and especially at work. There was a real onus around the power of language, and how it is important that the group sets the terminology. I experience and real annoyance and anger at how mental health services have highjacked the terms, ideas and phrases developed by the Survivor Movement way back when, and turned them into empty speech and ‘progressive’ buzzwords. Yet, being an NHS worker, like millions of others, we kind of have to work to existing frameworks and language even though we know they’re wrong or ill-advised. Language is really powerful.

She used a phrase which came to sum up the weekend; “Nothing about us without us!”. Yes, Inga! She explained how the GMCDP work – the coalition of people involved (including allies who understand the principles) and who utilise the organisation have a say in how it develops and how they align themselves. It was very powerful stuff.

Concerning work, it got me thinking about using art for activism purposes, and how we can do things differently, to champion peer-led support and make things more accessible… this could include like… the students making zines that could be distributed, YouTube videos of things to do at home, and try to consider how the groups that aren’t inclusive of all forms of mental health… It also got me thinking that since I’m thinking so much about work, work ought to be paying for me to be here lol.

It also got me thinking about the access of The Critical Fish. I’m annoyed that the first issue isn’t as intrinsically accessible as I would’ve hoped it would be, and I thought about how much of a statement it could make to have the whole issue where it’s black ink on yellow paper, in nice, big print.

For my own exhibitions, events and projects, there’s a few things that can help make something more accessible. It’s not an exhaustive list, but Inga mentioned the following considerations can help:

  • Room Temperature
  • Lighting
  • Noise (background and environmental)
  • Large Print on yellow backgrounds
  • Braille
  • Plain, simple English
  • Audio Voice Text
  • Offer to read information beforehand
  • Transport support/good links
  • BSL availability
  • Lipspeakers

We also had a really interesting conversation about Assisted Dying, and how controversial it is in disability circles. Should there be assistance with dying after assisted living? Or are we judging quality of life by ableist standards? There’s a real divisive film called Assisted Suicide: The Musical. It reminds me a lot of a somewhat similar controversary in mental health circles… Can someone with supposed capacity make the informed decision to die? Sometimes people with suicidal intent are assessed as having the mental capacity to do so.

Coming back to Green Fish, we were presented with some questions to consider:
– What makes an organisation genuinely user led?
– How do user-led initiatives tend to start?
– What are the benefits of user led activism?
– …and the possible challenges?
– How can art and creativity come into play in user led activism?
– What makes a user?

With these things in mind, the two expedition groups shared what they discovered. The other group went to Horsfall Gallery, where they support young people with managing their mental health through the arts. It sounded really interesting too.

I’d have like to have done more about how to be a good ally at this point, but we moved onto the afternoon/evening activity. The idea was to think about your own lived experience and how that has influenced your activism/work. And then to create art (visual, performance, poem, whatever) with others with similar concerns in response to that. I really, really struggled with this. I don’t know if I understood the question, or didn’t know how to respond, or felt too divided… I don’t know. Zoe was a gem and spent time with me working through my thoughts and ideas, but I still went inward and withdrew.

I think part of it was not knowing what ’cause’ to focus on.

  1. I’m very much into environmental awareness and fighting for the planet. I’m a member of XR, I do my bit best I can in buying sustainably and reducing/reusing, offsetting and whatever.. and in terms of and my artwork, which uses exclusively natural, biodegradable, recycled or pre-owned materials, explores environmental ethics because it’s something I care deeply about, and I feel real grief about the state of the world. More artists need to be responsible in the way they make and produce art. Artists are often the canaries that sound the alarm (and more needs to be done to get the message out there), but many are wasteful and feel the role of artist excludes them from being responsible. Well, sorry, no. If you can’t think outside the box to make your art using ethically-sourced materials, then you’re not as creative as you think you are. And quite frankly, that lack of creativity probably makes you not a very good artist (oooo, savage).
  2. I get wound up about the art world about various things. I don’t understand this ivory tower nonsense, about art being pompous/inaccessible/relatable for the sole purposes of elevating the artist or making a ridiculous amount of money. More needs to be done in making the production and consumption of art accessible. I like the simplicity of the white cube space but I oppose the baggage, convention and intimidation that tends to goes with it. More needs to be done to eradicate the arty bollocks in my opinion, which is why I leant so hard into The Critical Fish. Navigating the institutionalised art world as an artist feels a bit like being Sisyphus building sandcastles – repetitive, hard, fruitless work that when successful, is only temporary before it is swept away by the tide. More needs to be done to make it more simple and fair. I am becoming more and more aware of my ‘social standing’ and I admit, I may also have a chip on my shoulder about the privilege and class of the art world. More needs to be done to support artists who can’t rely on the privilege of mummy and daddy. I’ve been on the sour end of it all too many times and it feels horrible, and so I want to push back against that.
  3. I know and care a lot about mental health. I’m not ashamed in saying I’ve been experiencing severe ill mental health since about five or six years old and have therefore had a colourful 24year history. I have in-depth lived experience but I have also been on the ‘other side of the staff room door’ after five years of working in mental health fields. I advocate for good mental health, recovery in the TRUE sense of the word (as in, the way that hasn’t been highjacked and bastardised by commercial and institutional psychiatry and healthcare services – strong opinion, I know), the social model of disability, understanding the socio-economic-political impact on mental wellbeing (funny how that reality never makes it into policy isn’t it?), the importance of community and sharing lived experience and the power of art in all of that. However, I feel I’m really pigeon-holed with the mental health thing because that’s what I do at work, I’m mad and I care for someone with mental health too. I just feel that’s all anyone ever sees when they look at me.

All those thoughts about all those different things flooded my headspace all at the same time… and I felt very overwhelmed when trying to respond to the prompt of ‘think about your own lived experience and how that has influenced your activism/work’. I don’t have one thing I feel passionately for! Anyway, I went inward and moved away from the group for a while and just withdrew, and I didn’t make or create anything. Which in turn, affected me because I thrive on making and creating, yet I couldn’t do it :/

Sara brought with this AMAZING old book from the 70s(?), the ‘A Songbook; A Red Notes Pamphlet’ – I loved it. It was a collection of all the communist, revolutionary, anarchic songs (often set to well known folk tunes) from rebellious days gone by. I loved it. Some of the lyrics in there are SO not appropriate (throwing petrol bombs at the police? Mmmm…) but the rebellious passion and conviction of ideas were so inspiring to read. I enjoyed the DIY, cut-and-paste photocopier sort of aesthetic to it too. I’d love to see an edition of Fish using that kind of approach. I think it would be really refreshing. I posted a pic of it to my XR chapter, saying we need something similar for our actions!

We had dinner together at Green Fish (thanks to Linda and to those who helped make it – it was lovely!) before everyone (except me lol) presented their artwork, performances, poetry, participatory exercises etc on this awesome makeshift stage at one end of the room (think fairy lights and DIY flags). Everyone’s work was brilliant and engaging, and some of them were REALLY moving and powerful (looking at you Adrian) – I really enjoyed watching everyone be so creative and expressive and to see how people channelled their passions.

Later that evening, I was shattered and wanted to just chill out. Went back to the cell, had a shower (yes, they were communal showers lmao) and chatted with some of the others in the ‘Recreation Room’. We had some really great, meaningful conversations about all sorts (I loved the chat ladies, really) and before long, I hit the hay.


  • We may be fighting different battles and come from different cultural backgrounds, but there’s many more similarities between us than differences.
  • Everything in this world should be user-led. But I still wonder how this can be put into practice? Are cooperatives the way to do this? Coalitions? Collectives? And how do you attract ownership if the ‘thing’ already exists (i.e. RC, Fish)?
  • Spirit. I’ve been impassioned by the others with spirit and it’s encouraged me to be a bit more forthright myself.
  • There’s so many ways to increase physical and cultural access and meet the needs of different people. It’s given me a lot to think about for my current and future projects.
  • Language is really important. Be sensitive to user-determined language and use it, out of respect if nothing else.
  • I am pigeonholed, and it frustrates me.