An artist’s reflection on co-devising a participatory project which seeks to highlight the importance of relationships to autistic people, while investigating the questions of co-authorship and representation inherent to the process.
I’ve never met Georgia Pavlopoulou, but our first phone call was a heartfelt exchange about neurodiversity, participatory and creative methodologies, and what we each aim to contribute to society. When we finally said goodbye, buzzing with ideas, we knew we could create something valuable and perhaps even unique together. That was 3 months ago, and since then we have been developing a creative, participatory research project which pushes both of our practices to new realms. It’s called FlowUnloked and has been awarded development funding by UCL Culture’s Trellis project.
Dr Georgia Pavloopoulou is an autism researcher specialising in family research and autistic mental health. She uses community based participatory methodologies guided by the lifeworld of the participant . Her recent study on the impact of COVID19 on family members of autistic people, showed how lacking society’s understanding is of #autistic lives and the wider autistic community. We have co-established FlowUnlocked to address this urgent issue.
I am Briony Campbell, a photographer/ filmmaker/ facilitator with an interest in how our relationships inform our identities. Our shared belief that relationships are fundamental to personal and societal well being was the catalyst for #FlowUnlocked. The world of neurodiversity was unfamiliar to me 3 months ago, and I have already seen such richness within it. That is in large part thanks to Jon Adams, an autistic artist, speaker and consultant, who joined our team during the initial conversations. It was crucial that we had the input of autistic consultants, to ensure our research be done with autistic people, rather than taking the detrimental approach of making research about autistic people, without their voices. This historically common approach has finally been recognised as a failing within many existing studies, the consequences of which continue to harm autistic lives. So, with Jon’s guidance as to how best to create an autistic safe-space, we recruited a small group of autistic East Londoners to consult on FlowUnlocked. Within 3 online sessions they were able to give us honest and varied insights into what relationships mean to autistic people, and also co-establish our objectives, terms of collaboration, and creative methodologies for researching autistic relationships. FlowUnlocked, has begun to explore the importance of relationships for autistic people, during lockdown.
During the second session we agreed on a creative ‘mini-brief’ for each person in the group (the 3 facilitators included), through which we would each reflect on a relationship that was poignant to us during lockdown. The timescale was tight, hence the task was challenging, but the results were amazing. Most of us were moved to tears more than once in the session. The personal reflections and group exchanges that took place felt as revealing and rewarding as the creative outcomes.
Jon wrote a poem about his relationship with stones. He told us that each summer he visits the same beach in Cornwall and brings home some stones (only the stones that seem to be willing). The following summer he brings the stones back to their original home and collects a new bunch of friends to ‘holiday’ at his home for a year. His annual ritual hasn’t been possible under lockdown.
our honest first born
delivered with salted sands
released miles below
in earths deep crystal heat
as unseen storytellers
skin covered while
one day soon
sing of honour
and dream of swimming
my brothers, my sisters
We seemed to share a love of stones in the group.
Georgia was deeply moved by Jon’s poem. She also has a collection of stones on her desk from Greece, her home, which she piles when daydreaming. She says Jon’s poem prompted a therapeutic release for her. She has since returned to his words over and over to gain a deeper understanding of issues around Lockdown loneliness, as well as autistic people’s relationships with silence, nature and synaesthetic experiences.
I myself once carried a shoe box full of stones from my grandparent’s home in the USA. The surly security guard at Chicago airport wasn’t quite sure how to react when I explained that my dad and I liked making careful piles of them (I was grown up by then). My dad has died since then but I’ve spent a lot of time piling those same stones with my baby daughter during lockdown. Jon’s poem elevated my momentary interactions with these ‘unseen storytellers’ to a whole new level.
Benny, who chose to type rather than speaking during our sessions, told us that having not seen his girlfriend during lockdown, she misses him, but he doesn’t really miss her. They’ve been in constant communication, and he’s content without being in the same space as her. Benny’s poem challenged what I held to be a universally accepted fact about what lovers need.
East End Boy West End Girl
I cannot touch the sun but her beams!
Blazing through space, seeping through skin, into my very bones.
At night she is too far to see but her rays shine far enough to reflect off the moon.
She is constant.
Our threads run from East to West, West to East. Strong sutures, knotted tight. Secure.
They weave through the vast space in between us like it is nothing. Until it is nothing.
It is nothing.
to be apart.
The notion that Benny’s relationship didn’t feel compromised by the distance, was unfamiliar to me and so poignant right now. I suspect that if I were not experiencing lockdown too, I might not have felt his truth so clearly.
The group had agreed that I should make work about my relationship to/ and developing understanding of autism. I made my images intuitively, taking the few realities I understood about autism as my starting point. After all of the participants had shared their immensely personal work, I felt reluctant to show mine, fearing it might come across as superficial.
I played with light and shadows, space and distance around a sphere which seemed to represent the ‘full knowledge’ that someone with lived experience of autism could have, but I couldn’t. Though I was attempting to illustrate my own outsider status, the others in the group saw my image as a representation of the autisic experience of connection and disconnection which is so fundamental to their relationships with the non-autistic world. The different ‘versions’ of the fingers suggested the various relationships one might have towards physical touch. (Reflecting back on the sharing I thought my photo, taken in the blazing sun, felt like an apt illustration of Benny’s poem.) I was relieved and quite proud that my work resonated with the others. From that moment I felt less of an outsider and more of an ally.
Georgia, who has been an ally to neurodivergent people throughout her career, wanted to make work to reflect the constant uncertainty of this position. Georgia described allyship as a difficult task in which the goal is never concrete. In her words; Allies might never fully understand what they are supporting. But without allies, it would be impossible to create widespread awareness. Allyship also means authentic friendships, passion for autistic parity and commitment to do things differently. Georgia often speaks about the qualities autistic people bring to her relationships.
Georgia found the task very challenging, and said that it gave her a great insight into how demanding a creative research method could be on the participants, something she had underestimated when working with them in the past. But I loved her photo. (Georgia’s photo is the header of this article). It encapsulates beautifully the complexity of allyship; the necessity for self reflection while trying to understand another’s interior world. The lines intersecting the image, some cut off and others complete, suggest the multiple paths one can take towards finding resonance, offence, allegiance, and divergence. Georgia has told me that she has inadvertently ‘put her foot in it’ many times many times in her professional relations with non-autistic academics and project managers! If she had not, I would assume she was only watching from a comfortable distance, and that’s not allyship.
We were awarded a small development funding grant to run this consultation group and pilot project. Now, with the learnings from our consultants within the pilot project we are planning the full project structure. We have devised an unusual methodology which highlights the issues of co-authorship and representation inherent to participatory art, and will share more about that soon. Next, we await news on whether we will be fortunate enough to secure funding for the full project.
 See for instance Georgia’s paper co-research with siblings: https://doi.org/10.1016/j.ridd.2019.103556
 You many find out more about the Lifeworld approach: https://pubmed.ncbi.nlm.nih.gov/30802802/
 Open Access COVID19 report can be downloaded: https://discovery.ucl.ac.uk/id/eprint/10101297/
For more on Briony’s work go to: www.brionycampbell.com
For more on Jon’s work go to: https://www.museumforobjectresearch.com/jon-adams/