‘We don’t need to be healed. We need society to reconcile itself to our presence. Are you ready to be part of that change?’
Redeeming Our Cracks
By Neil Paynter
Published by Wild Goose Publications
You come,
walking among
the brittle fragments
of our broken lives,
gathering up every sharp shard,
to fashion
a new and beautiful
mosaic.
Sandra Sears, from Redeeming Our Cracks
My purple monster
‘Sometimes I wrestle with my monsters; sometimes we just snuggle.’
Anon
Monsters are only monstrous when they are hiding under the bed. Trust me, I know, I have one. My monster is a purple monster. It is sneaky. It is a small, coiled creature, nestled deep down in my subconscious. It is often hidden, but certain noises and tastes and overwhelming situations tickle my monster, irritating it until it erupts, until meltdown. My monster expands to fill all of the unoccupied space in my brain, its fur standing on end. It is a frightened cat, ready to pounce; a bird startled out of its nest; a dog growling and barking and snapping at an unexpected intrusion.
Let me explain. I don’t really have a purple monster living in my head. But I am autistic1, and I live with CPTSD2, generalised anxiety3 and situational depression.4 Autism is a neurotype – a way of thinking and being. It is a diagnosis, but not necessarily a problem. Similarly, a counsellor recently helped me to understand my mental health labels not as disorders, but as rational responses to really painful and complicated situations. God made me autistic, and God celebrates my neurodiversity. The problem, for me, is that many people do not see mental health – or neurodiversity – that way.
That purple monster that I mentioned could be described as ‘meltdowns’. For me, meltdowns are a part of autism. They will not be cured; I will not grow out of them. Autism can include differences in executive functioning, sensory experience, psychological processing and social interaction. For me, this includes finding it very tricky to organise my time; having no visual memory or sense of direction; needing to/being able to do multiple things at once; being able to make connections between seemingly unrelated facts (useful when you are doing a PhD!); hearing repetitive noises as louder than they actually are; relying on lip-reading and visual languages; being unable to stomach certain tastes and textures; having extreme empathy; and experiencing variable levels of social anxiety.
All of these things are part of who I am, and I don’t dislike these parts of me at all. Many of these parts of me are gifts, or at least include a silver lining! But when society is structured around people who think and experience and live in a neurotypical way, those of us who are neurodiverse struggle. This world can be incredibly overwhelming. And, for me, that leads to the purple monster, to meltdowns, to a complete inability to cope, for a little while. Let me tell you about a few situations where my purple monster came out to play.
When I was nine, I called my teacher ‘Mrs Thingamabob’. She was furious. I was sent out. I wasn’t upset about being sent out. I was upset that I had upset her! She had written her name on the blackboard a few days earlier, so I was meant to remember it. I didn’t. To me, this was the end of the world. If only Mrs Thingamabob had known that I have no visual memory, and that I cared deeply about how she felt, the purple monster would not have made me cry.
When I was twelve, my teacher told my mum that I never paid attention. Why? Because I refused to look at the board when he was teaching. Duh – I was listening! If I looked at the board, I got super confused, and had no idea what he was talking about. If I just closed my eyes and concentrated, though, my brain lit up with facts and connections that were light years beyond primary-seven grammar. If only Mr B had known that I loved learning and was perhaps focusing more than anyone else in that room, the purple monster would not have had a tantrum at my mum.
When I was eighteen, at music college, I had an argument with one of my teachers. She told me that I had to memorise the pieces that I was going to perform. I tried to explain that I couldn’t. She said that that was nonsense, that everyone can memorise. I can’t. If only I had known, back then, that I was autistic, and that reasonable adjustments were possible, the purple monster would not have made me storm out of my lesson.
When I was twenty-four, the educational psychologist who diagnosed my neurodiversity said that I should apply for Personal Independence Payment (PIP). I did. In the face-to-face interview, I performed ‘well’, talking with confidence and flair about my studies, my work and my hobbies. I also told the assessor that I couldn’t drive without my wife in the car and that I needed adjustments around the house for my sensory and cognitive difficulties, amongst other things. Did I get PIP? Of course I didn’t. If only the U.K. benefits system understood autism. If only the assessor knew that people with autism who were raised as female – which I was, though I now identify as transmasculine – mask our symptoms (we learn to hide our differences in order to fit into a patriarchal, normative world), the purple monster would be a little more manageable today.
The point is, I hide my purple monster because I have learnt to. I have been taught, throughout my life, that this world cannot cope with my differences, that I need to mask my monster if I want to succeed. Many people who are neurodiverse and/or experience mental health difficulties hide the ways in which we struggle to fit into, or to cope with, the inflexible ways of the places where we study, work and live. I will always be autistic, and experience the effects of CPTSD, anxiety and depression. But perhaps if I could hold hands with my purple monster as I went about my day, life would be very different. Perhaps if Mrs Thingamabob had taken the time to get to know me before assuming my ignorance, I wouldn’t have had to worry so much about upsetting her. Perhaps if Mr B had been taught to attend to different learning styles, I would have been a better student. Perhaps if the classical music world actually talked about the vast amount of gifted musicians who are neurodiverse, the oppressive norms that it perpetuates could be dismantled. Perhaps if the systems that are supposed to support people with autism allowed me to afford assistive technology and reasonable adjustments, everyday stuff would be just that little bit easier and my wife might not have to be my carer, on top of working more than full time. Perhaps if autism were just that little bit more visible in this world, I could snuggle with my monster, instead of wrestling it.
As a minister, I often hear Christians say that they include everyone because ‘We are all human’. They have a point. We are all human. But we are also all different. Perhaps if those differences were brought into the light, more people would feel genuinely included, actually welcome, fully represented, really alive. When Jesus healed lepers, he sent them to the temple to present themselves, to be seen. It’s time for neurodiverse people to be presented to society, to be seen, to be accepted, to be included, to be loved, just as we are. We don’t need to be healed. We need society to reconcile itself to our presence. Are you ready to be part of that change?
Redeeming Our Cracks by Neil Paynter published by Wild Goose Publications, priced £10.99.
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