diversity and a piece of white plastic

Our autistic senses are tuned to pick up things, notice things, that others do not, as Rhi@OutFoxgloved wonderfully describes in this post ‘The day my autism saved my daughters life.’ Our always-on, delicate antennae are tuned into everything, so of course we can experience overload in NT environments, and fail to pick up things that seem obvious to NTs. We usually realise too late what someone meant when they were talking, as exact words and actions now sifted and processed, come back to us. In NT environments we can consequently be seen as slow, or uninterested, and underestimated.

Our thinking is immersive, our brains work overtime — whirring intensely and continually processing details coming from our senses, fitting them with our experience and skills, making unique connections. Sonia Boué‘s term ‘brain dancing’ describes this beautifully.

the painting

In one of the galleries is an extruded rectangular sheet of thin hard white plastic mounted on a wooden board, lying seemingly discarded on a low table. I discovered that this is a representation in relief of an oil painting on display an interpretation of the painting for blind/partially sighted people. I imagined touching it, my finger tips running over the surface, feeling the hard plastic with its complex indentations, and not being able to make sense of it. Was I wrong? Maybe I was underestimating the heightened sense of touch that may come with being blind or partially sighted?  I did not understand how this object could ‘speak’ or describe, or say very much about the painting to anyone and was troubled by its possible not-fit-for-purpose-ness.

I forgot about this until listening to artist Lynne Cox talking about her work on the Shape Arts’ website. What she said about blindness was so interesting, enlightening and refreshing. I realised how much my idea of blindness was about it being a deficit, and how much we still have to learn and discover about difference.

This made me curious about the object again. Looking for some reference to it online I found the makers website and 5 minutes into a 10 minute video was a clue — vocal input from others is needed to make sense of this type of tactile image. Though I personally recoil at the ‘tactile’ quality of hard plastic used for the purpose of conveying a painting through touch. 

My initial assessment of the object was confirmed when I read the excellent and informative ‘Shifting Perspectives’ by the RNIB, written by Zoë Partington-Sollinger and Amy Morgan. (for more info go to RNIBVOCALEYES)

‘Someone using touch to access an image will rely on their brain piecing together many snippets of information. Making sense of that information and organising it into a complete image can be quite a task.’

These objects need to be used in conjunction with, for example, audio guides or guided tours. Line drawings work better than oil pantings. I still feel troubled though. The object ‘frames’ and presents a particular way of seeing for blind/partially sighted people.  Are we, in the process, missing out on learning about other ways to see that may be more perceptive?

outside the gallery

We’re not good at explaining our ideas, because the originality and energy is in the connections we make between things, and these important nuances can be lost in the linear structure of an arts funding application for instance, and go unheard. Contorting ourselves into a structure, a system that does not fit we can lose our way, and our wellbeing. Sonia Boué has written extensively and articulately about this.

In the business of being an artist and being able to carry out an idea that involves others, and/or get recognition you need to get funding or commissions or residencies or you’re not on anyone’s radar and not taken seriously. This is my understanding of The Way The Art World Works.

I have applied for commissions, residencies and funding over the years and have never been successful. The applications become all encompassing and take over my life. A few years ago, I decided to submit my own idea for funding. It was daunting, but I have years of experience in (meaningful) public engagement work, managed (incredibly) to attract two respected partners, and develop the project to a place I thought was ready to make an application. The infamous #grantium portal with its unfathomable loops and non-sensical descriptions, was the Alice In Wonderland opener to a nightmare. The timing of my application meant that I was caught between the old and new system, but the new system used the same confusing questions as the old one. Answering the questions was like being in a labyrinth, or a hall of mirrors, with no hope of ever finding my way out.  At each turn, there were hundreds of possible exits, with each one leading to hundreds more… and numerous melt-downs. The process made me ill, and it was unsuccessful: the assessing panel said I had not explained an aspect of public engagement clearly enough.

When I was doing the application, I didn’t think the support offered and outlined in the guidelines applied to me, and couldn’t explain what I needed help on anyway. How can you explain what you don’t understand when you don’t understand it?

Sonia Boué’s blog brilliantly articulates and demonstrates the difficulties we can face when attempting to put into words and separate our multilayered interconnected ideas into rigid NT boxes for funding applications. It was only after experiencing this impossible process, and encouraged by Sonia, that I felt I could ask for support.

It has long been assumed our needs are covered under the ‘Disability’ heading. The artist Jon Adams (together with other autistic artists) is calling for ‘recognition and equality of support and funding for neurodivergent people as a distinct diversity category’ and tells us that ‘diversity is not diverse enough’.

Most arts ‘opportunities’ are not opportunities for autistic artists. Many (even those aimed at disabled people), exclude us as they are set up on a neurotypical basis, by NTs.  As an example, every year at one arts organisation, 16 artists are shortlisted to attend group interviews from which 8 artists are selected to take part in a free-of-charge post-academic programme. The process sounds terrifying to me, I wouldn’t dream of applying. NAS illustrate here what a 1:1 interview can feel like for many of us, let alone group interviews. How is this going to work, when for some of us just dealing with the complexities of communicating over the phone (auditory processing) can be a barrier?

In addition when offering opportunities organisations often have networks of artists they already know in mind, and networks per se exclude us. As Susan Kruse resonantly explains in the catalogue text that accompanies her work ‘United We Stand’  (Power: The Politics of Disability, Shape Open 2017):

‘Success is dependent on relationships and networks. For autistic people, connecting with other humans is profoundly difficult; feelings of isolation, loneliness and frustration are common. …if autistic people can stand together, …they will find their strength and power. Autistic friends are deeply precious.’

After being selected for a ‘respected’ Open after leaving college I was approached by galleries and writers but had no idea how to respond, because of my background and because of neurological difference. I was invited to talk about my work and to be on panels with other professionals at conferences, but I am unable to do this in accepted NT ways and had to turn down the opportunities. Alternative ways of contributing are never offered, when in reality there is #morethan1way2speak.

Many organisations see diversity as being out there and other, and oh we need to work out how to include ‘it’. So it has kept excluding us, overlooking all of us, and producing pieces of white plastic instead of listening and engaging with us. We are here. Just ask.

not a beginning, middle or conclusion

…or how we are disadvantaged by rigid NT structures, procedures and ways of communicating

I have spent most of my working life nodding and pretending to understand when I don’t — this has been my default mode which is ‘pass at all costs’, and then (double default) hiding the resulting anxiety and depression and feeling of failure.

At school I didn’t know how to ‘study’. Or write an essay with a beginning middle and conclusion. Or put forward an argument for my final BA paper as a mature student. There though, I explored creative ways to write and structure my writing.

I scraped through O levels (GCSEs) except Art and English Language. For other subjects I spent months learning answers to possible questions, whole passages from books off by heart, and re-sitting the ones I had failed two at a time. A teacher commented in a school report on a mock English Literature exam at A level: ‘Did not complete the first paper, and the answers she did attempt were very superficial. She must read widely and in depth.‘ This was confusing because at junior school and early secondary, I had read our local library’s entire stock of classic fairy tales, folk tales and myths from around the world — ‘Did not complete the paper‘ was a regular comment followed by ‘…must learn to work quicker‘.

Being ‘successful’ as an artist is about making connections and asking the right questions, and being able to write and speak NT to get funding/commissions. I have applied to many, but have never been successful. Making connections?! See previous post. 

Recently at work I asked for clarity on something complex and needed to relay this back to colleagues. I normally avoid this if at all possible because I never fully ‘get’ what people are saying to me if it is likely to contain complex explanations or directions, but I was feeling under pressure because I don’t normally do this and felt I should take responsibility this time.

A complex verbal explanation (or even ‘simple’, if there are a number of steps to follow) may as well be in another language. I recognise words but they are scrambled in my head as they are spoken so don’t make sense. I then get anxious and panic because I’m not ‘getting it’ and may have to relay this to others and/or have to act on it. There is no point asking for clarification because the situation would repeat itself. So I am left stuck. Not understanding what I am supposed to be doing, and getting more and more stressed because it appears that I’m not doing my job. Though my experience of having things ‘reiterated’ or clarified in writing is that this often has an official/formal tone which seems unfriendly, and makes me feel like I’ve done something wrong.

However, communication (written or spoken) by those in positions of authority is often not clear and full of obfuscation (love this word) — more in a future post.

At work I usually feel more comfortable emailing rather than speaking BUT I spend a long time trying to get the words and tone right, not always successfully, and management are wary of emails because putting things in writing makes them official. stuckinmute again.

It takes forever for me to put together something like a report — again the order of things is scrambled in my head like spaghetti. A colleague and I were asked to write a short report on our involvement in a conference. My colleague had done this and emailed the report before I had got off the starting blocks. I also find it virtually impossible to take a view on ‘how things went’, and dread this question. Until others start to discuss, I just don’t know.

At meetings I get stressed because I am always trying to process something said a few sentences before so miss what follows, and if I get the courage to ask for something to be repeated, often get looks that say ‘Were you not listening?!’

I am unable to express and share my experience and knowledge in recognised NT ways, so I can be easily bamboozled /taken advantage of by those who want to push through their own agendas, even though I may be aware it is happening. I just can’t get to the words.

But I can take hundreds of bits of video and make them into something that makes sense and has an impact…and I suppose in some sense, I am a communication expert — I have spent a lifetime studying the subject.

It’s difficult to be positive when you’re standing on an NT rug

This is a blog about surviving at work and being autistic (the so called ‘mild’ version) and artistic and passing as NT. Artists only sometimes get paid for what they do, though a_n have done a great job of trying to change this. My mother always wanted me to work in an office (which I do for part of my time), or be an air hostess, but she didn’t know about my struggles outside of home, and my teachers didn’t really know what to do with me. I think they were relieved when I eventually left. I always wanted to be an ‘artist’ (another story). Sometimes, as Boy George said recently, “being yourself is political”.

I have realised after a lifetime of passing and what that means — everything I experienced at school transfers by default to the workplace, in a slightly different adult version.

At school, I didn’t know what to do or understand what was going on. I learned what to do by copying others. At secondary school I didn’t speak, I had no friends, and most of the time I was terrified. I wanted desperately to fit in. I was fascinated by the most popular children, and thought that if I looked like them others would like me. But I didn’t look like them.

I knew what to do at home. At home I drew, I made things, and before the age of 13, wrote and organised plays and got friends in the street to act in them. The performances happened in our front room at home. I invited other children in the street to watch as an audience… and pay to come in. I organised jumble sales on the front garden wall. I made an insect zoo in my dad’s shed. All this was intensely absorbing and exciting.

I have worked in all sorts of jobs, and I have had difficult experiences in all of them. I always thought this was because I couldn’t do things in the same way as everybody else, I tried to hide this and blamed myself. I have spent a lifetime hiding. I understand now, that I am not a failure, I just think different.

My first job at 15, was a Saturday job in a supermarket stacking shelves. My mother pushed me into getting a job, I would not have gone out of the front door otherwise. My younger sister used to walk with me to get there. After stacking shelves for a few years they wanted me to go on the till. This was something I found terrifying and was hopeless at. One Saturday I was called into the office and told this would be my last day, and not to come back. This was confusing and devastating. The thing is if I was allowed to go on stacking shelves I probably would have still been there.

I couldn’t speak at school or most places outside of home, but could at home — this does your head in. In the last few years in my current workplace there’s been a big emphasis on cross departmental working. This relies on NT type communication skills, and being able to initiate communication. I still cannot talk to certain people in other teams, including authority figures — there’s no real reason I can think of, they seem like nice people, but I end up worrying that I’m not doing my job properly because I’m not making new connections. A few years ago I was unable to introduce myself to a new authority figure who had joined the organisation, the feeling of failure was overwhelming and triggered months of depression.

The feeling of failure is a familiar one. There are the sorts of failures others might experience — like not getting funding for an arts project. Then there are the other failures like not being able to speak when expected to, or not being able to fill out the holiday chart on the wall in the office — because to get to it I would have to squeeze between people as they are working and would need to interact to do this. Interaction like this needs thought, I have to be ready for any unexpected comments, so I put it off. I have thought about doing it when everyone has left, but I forget because by that time I am really focused on what I’m doing and madly trying to finish within my work hours (but always end up going over my hours), and filling in the chart would mean I have to switch gear and disrupt a train of thought that’s taken all day to get to. There’s always anxiety but the level of anxiety does not necessarily match the size of the thing that is causing it.

There’s a sort of unspoken rule among autistic people, that we should be positive about all the things we are good at, and I totally get this, but I’m not really sure what I’m good at. It’s difficult to be positive when you’re standing on an NT rug that may be pulled from under you at any moment.

I’m not really sure who I am because I have shut out who I am for so long. Looking back on things I have achieved, I can’t connect with them, it seems like they’ve been done by someone else, not me.