Tight spot. Real talk. Access to Work.

White hispanic woman with short grey/brown hair, wearing an egg yolk yellow jumper and large black rimmed glasses, stands behind a small vintage brown suitcase. The suitcase has the letters F.C. H. embossed in gold. The suitcase is standing on it's side, resting on a white cupboard. The woman is wedged in a corner behind the cupboard with the suitcase pressed up against her face.

White hispanic woman with short grey/brown hair, wearing an egg yolk yellow jumper and large black rimmed glasses, stands behind a small vintage brown suitcase. The suitcase has the letters F.C. H. embossed in gold. The suitcase is standing on it's side, resting on a white cupboard. The woman is wedged in a corner behind the cupboard with the suitcase pressed up against her face.

Yeah. This is a tight spot.

Hello, my name is Sonia Boué and I’m an artist. I also write about art and autism. Sometimes I write about professional matters, but I also write about being autistic. Often there is a crossover. Being a professional autistic artist is both easy (I have no shortage of creativity) and not so easy. Obstacles abound. I like to analyse the inequalities to counter them. We have a long way to go – largely due to historical ignorance about autism and other often overlapping neurodivergent ‘conditions.’ I’m conscious that in many ways I’m a privileged autistic person, so I chose to speak out.

Covid-19 brings a lot of clarity, ironically.

Growing into my autistic identity after a late-in-life diagnosis is an ongoing project. There are challenges, such as those as I write about in my previous blog post about emotional processing. The early months are the hardest, because generally there’s no support for the newly diagnosed. More than four years on it is mainly joyful being me.

Covid-19 arrived just as I began to embrace my identity as a disabled person too. Not all people in the autistic community do identify as disabled – so this wasn’t a given. For me it’s both freeing and matter of pride, bringing new conversations and fresh thinking.

Lockdown easing in the UK was a low point for me, but I’ve come through it feeling grateful for my family, and for wonderful friends and colleagues. If I were to die of Covid-19 I would want to have said thank you. You’ve empowered me with your interest, love and support.

I know this tight spot is like no other. The opportunity for factory reset is Covid-19’s silver lining. I did not like the old normal. Our eyes are opening to the structural bias’ embedded deeply within our societies and there’s a new hunger for change as witnessed by #MeToo, #BlackLivesMatter, and #WeShallNotBeRemoved.

I’m familiar with tight spots. Constricting and potentially disabling, they also bring opportunity. What matters is collaboration and support. This can be hard for autistic people as we can also need a great deal of time alone, and often find the emotional labour involved in maintaining relationships difficult to sustain. For some of us, a lifetime of ‘coping’ and ‘masking’ autism leads to extreme isolation. I’m convinced that although we excel at going solo (and need to for many tasks) we also benefit greatly from collaborative opportunity, if brokered in accessible ways. I’m curious about the mechanisms by which access to support is short-circuited, which I suspect are fulled by serial and ongoing negative responses to our interactions. Whole lifetimes of being misunderstood pile-in to the psyche. Why reach out when you know you’ll get your wrist slapped. Some of our so-called ‘characteristics will result from negative learning.

I’m interested also in the protective influence of love and acceptance, and the confidence self-knowledge brings. And what about the catharsis of being seen and heard? Sometimes it takes another person/persons to validate our experience for us. How many autistics miss out on this important encouragement?

Isn’t it true that we only know what we’ve been missing when we experience it for the first time? Well this week something like this happened to me. What I’m noticing under Covid-19 is that I’m having (what I call) real conversations. There’s a new honesty in many of my interactions – less small talk and social lying.

Part of this new honesty is a truer reflection of my disability. This week I’ve been supported to make an application for Access to Work. I’ve rarely felt more seen and heard. Ordinarily you might think it would be painful to detail all the areas in which you need help, but curiously this wasn’t the case in this instance. I put that down to the quality of support I received and the incredibly generous and thoughtful ways in which this process was made easier for me. I can’t really stress enough how good it was to hear the words, ‘I do hope you get this’, from my helper.

Invisible disability is difficult to broker. Allies who get this are worth their weight in gold. I want to thank Arts Council England, Disability Arts Online, and DASH for getting me to the point of an Access to Work application. Due to my disabilities I couldn’t have accessed this alone. It takes a lot for me to own that my need is real. If granted, Access to Work could revolutionise my practice. Our sector needs to understand the myriad ways in which this is not a level playing field.

Published by soniaboue

I am an artist.

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