Should Neurodivergence be categorised as disability? Jon Adams, founder of Flow Observatorium, identifies as a ND (Neurodivergent) Artist. Believing that Neurodivergent individuals should have more self-autonomy on how they choose to identify, he started Flow Observatorium, an equality and diversity organisation for ND individuals which is also run by ND individuals. Jon has found that many ND artists he works with do not consider themselves to be disabled in the traditional sense. Interview by Emma Robdale.
Flow Observatorium’s launch, on the 27th of September, was well attended with some of its supporters being local MP Stephen Morgan and AIM (Autistic Inclusive Meets) representatives. Messages of support arrived from as far away as the US when Steve Silberman, author of Neurotribes and contributor for Wired Magazine, sent a video message expressing his enthusiasm. Dean Beadle an autistic speaker, singer and journalist stated,
“A neurodivergent brain offers an alternative view of the world which can result in the most innovative, inventive and original art. We know that neurodivergent people are often overlooked in society, so it’s a huge comfort to know that Flow will be championing parity within the arts. This will go a long way to increase opportunities for neurodivergent artists to have their talent recognised.”
Similarly to other disability run groups Jon Adams, founder of Flow, advocates the importance of ND people managing and operating facilities catered towards them,
“It would be seen as unacceptable for non-LGBTQ to be writing the rules or narrative for LGBTQ people, so why is it acceptable for non-ND people to tell ND people what they should be?”
Currently many charities seeking to support ND individuals are still run solely by NT (Neurotypical) individuals. Not having ND people at the forefront of charities leads to ND people’s needs not being properly acknowledged. However, from his own experience, Jon has also found that the needs of ND individuals can also be neglected by groups representing wider disability,
“It sometimes seems as if we are invisible or ignored, with no coherent voice. I recognised the need for a network. A hub to provide both a voice and peer to peer support so that artists like myself can feel like they belong.”
And this was Jon’s sentiment in founding Flow Observatorium; for ND individuals to be able to connect to other ND people and receive support to thrive in artistic pursuits. Jon does not believe that ND individual’s difficulties arise from their diagnosis, he instead advocates that many problems, including mental health factors, are caused by sociological factors,
“Mental health issues are a huge barrier to ND artists. I suffer from PTSD as a result of my negative experiences. We need to make sure the next generation of ND artists don’t go through the crap we older ones have.”
Many of the problems Jon faced around his neurodivergence have arisen from being bullied, from social isolation, and from facilities being inaccessible to him as his sensory difficulties and differences in perception were not accounted for. These elements did not need to be part of his ND experience, and Jon sees Autism and Neurodivergence as separate from Mental Health conditions,
“Autism is not a mental illness, it is an inherent way of being… however we may suffer mental health issues due to bullying in a world that generally doesn’t accept our difference.”
It is Jon’s desire that with a strengthening ND voice, he, along with other ND individuals, can force institutions to become more enabling of ND people, so that trauma and PTSD do not need to be included in the narratives of future ND individuals.
Flow Observation also accepts that ND artists may not consider themselves to be or wish to be defined as disabled,
“Some of us have a desire for recognition as ‘neurodivergent creatives’ and not to deﬁne ourselves as ‘disabled’ if that is not our wish. We don’t want to have people decide or dictate our positioning to us.”
Jon does not wish to see ND individuals only included within disability culture, but for ND creatives to be able to carve out a culture space of their own within the arts landscape, and eventually infiltrate larger organisations,
“Neurodivergence is about those of us who are ‘differently wired’ from the accepted society ‘norm’. However to us at Flow Observatorium our difference is ‘normal’ and accepted. We’re after societal change not only an acceptance in the art’s landscape.”
He has so far he’s received 100% positive feedback from the growing artists’ network Flow Observatorium supports,
“They say that it is great to feel connected to other ND artists who understand how they feel and the barriers they face.”
Jon Adams the Artist:
Jon realised that he was a creative individual at the young age of six when he became more aware of a synesthetic relationship with time. But he also had an intense passion for science and history,
“I’ve always been curious in what was above and below me. I’ve never been sure if I am an artist with a love of science and history or a scientist who can draw.”
However, when ten years old, he was disheartened from pursuing creative endeavours,
“My teacher tore up a picture I had drawn in front of the class, as I’d spelt my name wrong.”
It was a time where difference was less tolerated and little was known about Neurodivergence. It took him until he was 39 to be officially recognised as dyslexic. Pausing his creative passions, he chose to pursue interests in geology, taxonomy, palaeontology and stratigraphy. Only after completing his studies did he turn to illustration, which “gave me more opportunities to be solitary”, and also enabled him to start channelling his interests into creative pursuits…
“I’ve interwoven my skills with geology and time into performance, poetry, sound, sculpture and socially engaged projects.”
One of his most pertinent projects Lookabout, commissioned for London 2012, incorporated this interweaving of science, metaphor and art,
“Getting to turn five years of my life into a geological map and metaphor with the Cultural Olympiad. For this I wrote everything down for 2 million minutes which helped signpost me towards my autism DX (diagnosis).”
His work went on to be recognised by Cambridge University where he was offered a Welcome Trust ‘Artist in Residency’ position with their Autism Research Centre. At the centre he made sequences and music from words and MRI machine noises. This led to him working with Sir Peter Brook on his play ‘Valley of Astonishment’. And Sir Peter encouraged him to channel his synesthetic experiences into creative writing and performance. Jon now has four performance works focusing on his interests of: Humour, Metaphor, Lived Experience of Synaesthesia, and Suicide and Family History.
After struggling and prevailing in his own pursuits both academic and creative, Jon is now ensuring that other ND individuals are also afforded the opportunities needed to succeed, and have a less bumpy time doing so!
What’s next for Flow?
Flow Observatorium has already got a published manifesto which is being used in Singapore, Australia, Canada as well as the UK clearly promoting its vision,
“The charity’s primary objective is to connect ND artists with other groups that advocate creativity for ND individuals, and to work with university researchers so as to be able to campaign for better visibility. Flow Observatorium wants ND individuals, views, experiences, and their creative endeavours to be valued, and seeks to support established and new and up-coming ND creatives.”
They have also released a concise document detailing appropriate language to be used for Neurodivergence, using an Autistic angle as example, (*See end of article for examples) recognising current language as being oppressive. Flow is keen to challenge and adapt the language centred around ‘disorder’.
As a ND journalist, I am personally excited be able to follow a new batch of artists being supported by Flow Observatorium, and watch the newly recognised landscape of ND/Autistic work develop. Hopefully we’ll be seeing more groups and events led by and enabling ND artists ensuring that their creative perceptions are recognised and included within the larger tapestry.
“Thanks for helping me feel a little less isolated.”
Audience Member at Flow’s launch
Examples Flow Observatorium’s up-to-date Terminology of Autism and Neurodivergence:
- Avoid; ‘Person with autism/neurodivergence’ – this engenders distance; it’s not separate but part of innate humanity & identity. Please use ‘autistic person/neurodivergent person.
- Do not use: ‘Has autism’ – Autism is not an illness or disease please use ‘autistic’ or ‘on the spectrum’. Technically autism is a condition, not a disorder, but we believe it’s an innate way of being.
- Do not use: ‘Lives with autism’ -– I live with my wife and cats. Do gay people live with gayness?
- Do not use: ‘Suffers from autism’ – Generally we suffer from people’s misunderstandings and bullying.
- Do not use: ‘Fighting autism’ – autism isn’t a malevolent force. We fight against attitudes.
- Do not use; ‘We are all a little bit autistic’ – This is complete rubbish and offensive/demeaning to actual autistic people.
- ‘He has mild autism/Asperger’s’ – Curries can be mild. You either are or are not Autistic/Asperger’s, it just depends how well you cope with camouflaging yourself which takes considerable energy.
- ‘High functioning/low functioning’ – Out of date and offensive to all. You wouldn’t say or refer to a neurotypical person as HF or LF’
- Do not assume all autistic/Neurodivergent people see themselves as disabled. Don’t use ‘disability’ or ‘differently abled’, use the terminology ‘autistic’ or ‘neurodivergent’.