[here is a thing i did earlier this year] [the conference was online this year. i met some nice people and had some good conversations and laughed about fish-fears]
Thankyou to Elvis Coimbra-Gomes and Matthew Hiller for organising the conference.
The link to the video i did is here: (captions included in video, transcript-text below)
The other talks can be found here:
Information about the conference:
Transcript (OCD in Society Conference 2021) (recorded in May 2021, for OCD in Society Conference)
‘OCD-experiences, when I call them OCD-experiences’: Permission to Relate to OCD-experiences alongside my personal normoreality)
hi… I’m Sumita, I’m, um… a brown person I’ve got short brown hair, wearing glasses, ermm currently wearing a black shirt with a white criss cross grid on it and a red top with, um, white polka dots on it, a grey owl necklace and i’ve got blue lipstick and blue nail polish, because apparently i wanted to look at dizzy as i currently feel… um! my pronouns are she/they… umm what haven’t I said! I’m a brown autistic arts-maker… person, i… had to strongly hesitate at every one of those describers, even the person one… thought-loop fireworks in my brain, like electric bubblegum, so i’ll carry on talking before i have an online public identity crisis why do i put myself in these situations i do not know! <laugh>
i have… i feel like i have… i ‘relate’ to… <laugh> wait – sometimes, when i am stressed, i get.. i Become… like, i sort of, experience… <sigh>
i often find myself on the edges. in the in between worlds spaces. on the overlaps. ‘never quite’. and that brings the anxiety of feeling never quite ___ enough, of anything. to be anything. even when i read through what i submitted for this conference, i had put ‘I am a brown, autistic arts-maker /researcher’ – and there wasn’t a single part of that sentence which i didn’t doubt myself for, which makes me feel… horrible! like, i’m taking up space. in every vague sphere. that other people are going to be impacted by my taking up space. space. give them space. that i am impacting people. that i’m contaminating the space, ruining the space, taking up, taking, accidentally yet selfishly or maybe part-consciously intentionally converting never-quite-enoughness into overbearingly too-muchness, creating, taking, impact. give them space. tectonic plates. violence. hurricanes. volcanoes. tornadoes…
(sung with piano) “i’m sorry about the news, so sorry about the news again. i’m sorry about the news, i can’t watch it, i don’t watch it, but i’m responsible”
‘I must have been feeling particularly brown that day, to so boldly describe myself as being brown’, i joked… I am brown. but being of mixed brown cultures whilst being born and brought up here in the uk was like a culture difference of its own. though it shouldn’t be, surely, i didn’t move here, i didn’t know any different, didn’t know it was different just thought i was ‘this’, and then being autistic was a culture difference, too, so then being culture-differenced within a culture-difference became… another… culture difference?! <laugh> or perhaps that’s what made me culturally indifferent. and it didn’t stop there – so, i am used to being not of the normotype even… within wobbly-lined intersections. but i create my own normotype to deal with that. being on your own a lot does that, it’s good for that, as there isn’t much reference to a majority that you’re different from. you absorb your own norm – which is comforting, once you’re able to give yourself what i call Permission to Be…. until the escalating-escalators start off again, climbing, spiralling, squashing in on themselves, squashing in on the inner-selves, worrying and sorrying about all of the ghost responsibilities of the world, in the world, about the world, so many things happening around the world and i’m sorry, okay? i’m so so so-so-so-so sorry – (sung with piano) “i’m sorry about the news again, i’m sorry about the news, i don’t watch it, i can’t watch it, cos i’m responsible…”
sometimes i imagine things know things feel things, see things, that – it’s like, it’s like i have these… MAGICAL ABILITIES… ok i know that might sound odd, but sometimes i do things, or think things, and then other things… other things happen, somewhere else, because of the thing i thought or did – or because of the thing i Didn’t think or do, or thought i did, or thought i thought i didn’t do before i know i did, or could… the possibilities scream certainties, unhypothetical disease and don’t you dare call out irrational that’s been proved wrong too many times, the panic wasps meet panic bees in trembling ‘i knew it, i knew it was going to happen, i knew it i knew it i knew it’ – the word ‘coincidence’ grins at me from the wonder-underlands, a floating taunting chuckle that i’d much rather avoid… and so, to un-thing the things, before they soon become the things, i need to do other things, which might seem completely unrelated to the things but are definitely related to the things – or i need to check on the things i think i thought i’ve done but am not sure about, which i’m sure that i’ve definitely probably maybe not done ‘enough’, just to avoid more things happening, like the already happened-ings, – not enough not enough not enough i am not enough never quite too much too much too-to too-too too muchd, accidentally yet selfishly or maybe part-consciously intentsh- intentionally converting ‘never-quite-enoughness’ into overbearingly ‘too-muchness’, creating taking impact give them space, give them space…
and i’m sorry, i’m so so so-so-so-so sorry those things happened it’s my magical abilities, i’m responsible, i’m so important and powerful that i can just make things happen, and therefore i need to make things Not happen by doing the things, to make up for the things that i did…
(sung with piano) because i’m so important and powerful that i can eat a biscuit and cause a forest fire on the other side of the world, i’m so important and powerful that i can drink a glass of water and spit it out and cause a flood. oh i’m so important and powerful that by not touching that chair hard enough i caused pain and sad and killed some people and oh look i started another pandemic again but that was last year’s news when i accidentally looked at the news and then that caused some other news the news the news the news the news the news the news the news.’
it seems like just not watching the news would be helpful here <laugh> just never look at the news and then you never find out about all the horrible things i made happen! but you can’t do that because it’s kind of unavoidable, especially these days, when it’s not in your brain it’s EVERYWHERE ELSE… (sung with piano) “i walked into a room and accidentally overheard the news. i didn’t want to know all of the things i didn’t want to do, the things i didn’t mean to do, the things that i try not to do. the outer-world projection of my inner brain mind view connects up the connections like a dot to dot puzzle, to illuminate the things that my superpowers, my super superpowers have overpowered this time… oh my superpowers, my super superpowers are overpowering my mind so much of the time and when it’s magical, super magical for all the wrong reasons, i get scared for you to even come near my mind view, in case something happens to you too… stay away from the peripherals in case something happens to you too… it’s overpowering my mind so much of the time.’ – i know, me and my giant ego, thinking i’m so important and powerful that my magical abilities cause all of the things that i worry about having caused! Hi i’m Sumita Unjumbled, Sumita still unjumbling i think, and i self identify as having OCD related experiences, and i will call them OCD experiences, and i can call them OCD experiences, when i call them OCD experiences, because of what creative expression offered me in terms of communication, and re-integration – re-speculation… re-narration, of my overthinky anxietyness. when i write these brain-thing songs, i call it a songwriting therapy exercise not just because of the generalised therapeuticness of music or writing or expression through creative play, but also because for me, it’s a self therapy exercise which allows my inner-beingness to surface and translate, which then allows me to see and form understandings and find ways to release and laugh and share and heal from thought-loop dizzyness. but also, it was actually other people relating things about the way their minds worked, in response to me expressing about my mind sharing brain-songs, which moved something from me just, me spilling out brain-stuff, towards helping identifying how my experiences aligned with certain frameworks… including ocd. this was something i was definitely resistant to at first, being the kind of person who likes the brain soup to be the brain soup and that’s just what it is, but once i’d squashed some stubborness, this opened up pathways of having permission to relate, permission to explore, permission to identify – permission to describe ocd experiences as being ocd experiences, when i decide that they’re ocd experiences.
as a performer, i have different spaces to be in, or as. with one of those spaces, IndoorGoblin, it’s really important to me to be able to express through non-pathology.. to, as i already described, let the brain-soup be the brain-soup. to express on my terms, as experience, my.. worlds. i get.. ground-swallowing fear of describer-terms, they make me feel more alien – like my beingness is being moved into another persony not-fitting-in-ness space under false illusion, fake safety, smirking edges trying to trick me to be comfortabled. peopley-made pathology does not leave me comfortabled. never quite enough. pathology is like part-grasped hands unoffered to my melted jelly presence, it does not hold. i pre-empt the drop.
IndoorGoblin allows me to hold myself, through many jelly consistencies flowing through in-body around-body was-body unbody. ‘enough’ is non-sensical to something that’s everything, those qualifiers become light-shadows in the sea. but, as Sumita, I’ve recognised the value in connecting with specific experiences using peopley diagnostic describers as a way of understanding, untangling, difficulty-solving… relating, sharing… communicating. creating possibility, and opportunity, to observe unidentified unedited personal norm-feelings and experiences through social frameworks, alongside others. collaborative unjumbling, what-if-i’m-enoughness hope-creating, performance-lens re-envisioning, re-internalisation, creative exploration, solution-forming. norm-renorming.
My internal normodivergentness created a resistance to diagnoses, a defence towards barriers to getting diagnoses and/or specific support. never-quite-fitting-in-enough is a lot to do with overlapping experiences, which meant an inability to get help, or to know help was an option to me – although this was also shaped by my autistic-flavoured often internally claustrophobic communication style. i learned to communicate brain-things mind-things soul-things through creative things – poetry, writing, art, not sitting in front of a person and saying how i feel. and when i did sit in front of a person and say how i feel, it didn’t usually show how i felt. i usually laughed as self-coping.. defence.. fine-thanks-how’re-you persona shining out of me, and i didn’t often know what i was trying to communicate. i didn’t know i was autistic, for a start, and communicating anxiety-driven body pain to doctors due to The Planet Being a Stressful Place to Be In, became the weirdest riddle throughout my teenage years, um.. assessments became assumptions – disordered eating related assumptions were based on my body type, meaning restrictive eating was never noticed – and was encouraged, creating The ocd-patterned Thing! i was never properly asked about my inner-mind experiences in relation to any of my physical things… and even if i had been, i likely wouldn’t have known to communicate them unless through creativity… but why did no-one ask? why did no-one notice autisticness, anxiety, ocd. i wouldn’t have been able to recognise those things within myself – because stereotypes existed and i had a very messy bedroom. my self-coping meant diluting experiences yet still fearing over-exaggerating, my distress level wasn’t accurately measurable with my ‘i don’t know how to talk to you’ autistic-flavoured communication, i was perceived ‘well’ and often acted well just so that i didn’t have to deal with it. which meant, when i couldn’t deal with it, i was on my own.
My mergey sense of reality creates a culture-clash of normorealities, and my normodivergentness, including my mixed brown cultures and autisticness, further confuses the internal fight of deciphering deciding between ‘rational’ and ‘irrational’, which can complicate managing, understanding and accepting OCD. By normorealities, i mean, personal norms, before things go through a wider socio-majority filter of acceptable or not acceptable, about what’s usual, about my own patterns of understanding, experiencing and being, which create a sense of reality-stability within my own personal mind-spheres. what’s normified before it’s disturbed. although sometimes the disturbance becomes a part of the normoreality. and disturbances can make the unquestioned ghost-blanket of real rules crumble like a biscuit, before we even know – knew the blanket was made out of biscuit… and before i know it, i’m left to form the cookie cutter with the crumbs, just to establish some sort of shape of what we are.
normorealities, and the acknowledgement of people having personal normorealities, are relevant to ocd, because it affects the deciphering/deciding between what is rational and what is not. other people’s normorealities affects their perceptions of your judgements, and my perception of their perceptions of me affects my judgements of my judgements, and my behaviours, and the things i feel i have to do because of it.
when i call an experience ‘ocd’, i am deciding certain thought-things are not ‘rational’ or ‘real’, either in substance or intensity – which is difficult to accept or want to accept when you live in a world where your normoreality is thought of as being irrational or imagined when it’s not. when you live in this over-sensory imagingationy in-between-worlds space you instinctively create your own normoreality to Be through – or, i do, anyway – but living amongst society-groupings with established normorealities differing from your own, even within the intersections you’re supposed to belong to, means a constant stressing-assessing of what you allow to be rational, for you, and how you decide to fit those things into outer world societies’ versions of the rational/irrational yoyo wars of doom.
whilst considering ocd alongside my autistic beingness, i decided that the ocd-flavoured dysfunctionalness is not because autistic beingness is the Problem, or that it’s Being Problematic, but because ocd-susceptibility is heightened due to my autistic processing style. this is similar to how i’ve explained psychosisy-stuff in relation to having a supposedly over-imaginative thinking style: if the instinctive way that i think is multisensory and imaginationy, then when i am unwell, the unwellness is going to present in a multi sensory and imaginationy way – it doesn’t mean the multi sensory imaginationyness itself is the unwellness, but the unwellness-experience-feelings is the unwellness, whilst manifested through those channels. that means what i call ocd when i call it ocd presents itself through this, too. this is important because i want people to recognise the unwellness when I’m describing it and not pathologise the beingness before it turned unwell. this means i must consider how my usual sensory processing and over-absorbyness of things flying in at my brain from all angles differs from ocd-flavoured intrusive invasive thoughts. how repetition and echolalia-shaped joy differs from keeping on keeping on thinking something, not because it’s not stopping by itself but because of the fear of what happens when i do stop. how attention to detail and wanting to understand differs from the really irritating thing where you can’t get on with your day until you scroll up and triple check the most unimportant world- word whilst looking at a website, which doesn’t even change the sentence, or your life, for the millionth time, and isn’t even something that you care about, yet you need to do it because of the threats of what might happen if you don’t! the difference between enjoying the sensoryness of putting a cup down or clicking in my throat, and repeating it not because it feels nice but because it’s not right, because it has to be right, what if it’s not quite, repeat, repeat, repeat, repetitively unsatisfied.
i also decided that it’s when the beingness becomes unbalanced which triggers the ocd-susceptibility ghost-seed to begin to to bloom. which can either be de-escalated back into ghost-seed, or it goes full bloom spiralling vines multiply fast-forward-flowering whoooshhh. sometimes, an action that i feel is autistic-flavoured escalates into an ocd-thought-soup-filled version of the same action. and this made me wonder about how autism-things used to be, actually still are in some places some people, pathologised regardless as to whether the thing happening is distressing… how does this compare to ocd? well, ocd is always distressing… because we call the distressing things ocd… but is there more to it than that, and what can we learn about the ways people with ocd relate with each other aside from the ocd itself?
if what was called ‘asd’ can now be framed as ‘autistic beingness’ and explored through ‘autistic joy’, what does this look like within a person whose unwellness manifests through ocd? ocd joy can’t be a thing because ocd is not joyful – but a person who experiences or has experienced ocd can certainly experience joy, of course. just not when they’re experiencing ocd!the way autism was historically pathologically framed didn’t sound joyful either. I personally refuse to describe autism as being called ASD like many papers and places and people still do, because it reminds me of non-autistic-perspective lists of problematic symptoms which don’t acknowledge autistic beingness as integral functioning, and only observes as needing-to-be-removed needing-to-be-squashed disordered other. therefore, with those associations when thinking about the term ‘asd’, just as much as ocd-joy can’t be a thing, i don’t know if in my head ‘asd joy’ seems possible either… even when autistic joy Definitely is.
learning to recognise when something is an ocd-pattern before it escalates into ‘Immersed In Disorder’ means people can feel confident to identify what it is before it escalates into individually uncontrollable crisis, and may enable people to communicate what’s going on for them more effectively, that’s if their experiences aren’t dismissed. what if we didn’t have to let it escalate out of control before we could be offered management tools? or if there was some sort of re-framing ocd-world where ocd can be recognised before it’s on the ‘highest scale of distress’? the judgement of distress-measuring thing is an issue which can be a barrier to getting support, and can often lead to people getting more distressed in the process of going through, or not going through the judgey-systems – systems. this is not meant to undermine the experiences of the people who suffer the most, but i am considering how autism narratives have evolved and, in an open-minded way, i am wondering what this would look like in the context of ocd-patterns.
or maybe it’s just that it’s not ocd until it’s ocd, and maybe people with different experiences to mine will think i’m being completely ridiculous even associating myself with the diagnosis – maybe it’s not ocd, in which case what on this planet am i doing speaking like this at this conference! <laughs> when you don’t fit the normotype you then misjudge your unwellness yourself even when you’re a scrambling soup on the floor. and everyone else does, too.
Creative spaces can bring opened boundaries where normotypes can meet other normotypes.. where the perceived normotype is not necessarily the normotype. they bring inter-community relating through experience, connection and belongingness. Permission to relate enabled me to more quickly recognise a particular flavour of an anxiety-pattern: an ocd-flavoured anxiety pattern. even when Permission to zoom in and out of framework lenses is so important for me, the option of communicating through diagnostic language might have helped me earlier, and if it weren’t for my privileges i may not have coped through it.
i’d like to be confident enough to say ‘THIS is the flavour of distress i am having, please can i have some help’ when i recognise i need help.
it’s the wish for permission to relate to ocd-things, when i call them ocd-things, without more not-fitting-in-things become- becoming another ocd-thing in itself. to have the option to enter the spaces which might be able to provide support. to be able to say ‘i’m having an ocd-thing, this is what it looks like’ when i know it’s that, and to be listened to, rather than being fearful of being turned away for not being ‘enough’ to be even considered.
communicating the thing shouldn’t be a whole nother escalation of the thing. seeking support shouldn’t lead to more unwellness. or be defined by someone else’s measure of your.. internal distress.
i don’t want to be tied by frameworks i only half-feel belongingness to, especially if they cause me more anxiety. but even if the frameworks don’t fully expand around my entire personness, in the approach of unwellness-escalation, and for the hope of solution seeking for optimum functioning, i want to have the option to allow myself to call my ocd-experiences ocd-experiences, when i call them ocd experiences, alongside my personal normoreality. and i want others to be able to for themselves, too, with whatever the pathology label they identify with.
Thankyou for listening!
…. how do i leave… how do i leave!
um… what button do i press…