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Anya Ustaszewski

This is an article created by Sarah Pickthall for our sister site, Sync and reproduced here - you can also see it there at www.syncleadership.co.uk

When I first meet Anya Ustaszewski outside Lewes station, she cuts an extraordinarily commanding figure, towering above me with a smile that holds me fast.

Interviewing Anya for Sync is something I’ve wanted to do from the moment I saw her face beaming out at me from this year’s Decibel Pas Performing Arts Showcase Programme in Manchester. Anya describes herself as a musician, activist and autistic.

I haven’t come across many people who openly put their place on the autistic spectrum out there, alongside their artistic offer, and she clearly did this as part of her pitch at Decibel Pas, showcasing her latest work in progress, Metallicum.

I found her work fascinating in Manchester, though it made me feel a bit wobbly on my feet, and I wrote as much in a piece for Disability Arts Online who were covering the 4 day showcase event.

After Anya read my article, she contacted me to let me know that I could have laid down on the floor to experience the work, and this made me question why I had not made a conscious choice, during her pitch, to lie on the floor where my body often prefers to be.

A review of Metallicum - Work in Progress, Decibel Showcase
Photo of Top Wheel website

Apologising for existing

When I ask Anya why it seems easy for her to say what she wants, needs and believes, she tells me it has not always been this way.

She talks about the years of confusion, suspicion from others, the not knowing why she was so different, and the release that came from a diagnosis that confirmed she was a high performing autistic, and not bad, mad and difficult.

"The diagnosis meant I could stop apologising for existing".

As our conversation develops, she talks candidly about when autism was the missing piece within an already complex picture

‘I am autistic but I am also half Seychelloise with a really interesting past, surviving and living in different cultures and without a diagnosis for my condition until recently. Now that I know why I am the way I am, I bring all of me, my music, my diversity, including my autism, into how and why I lead and the combination seems to work. I don’t know how not to do this anymore.’

anya wearing her earphones

No label, no help

As the café becomes noisier, Anya puts on her industrial ear defenders showing me how she blocks out the sensations that can be so excruciating for her.

She describes them as a sort of 'armour' and talks candidly about information overload when every sound, noise, sight and smell is like opening 20 computer programmes all at the same time, making her melt, crash and shut down.

She talks about how she spends 25% of her time as non verbal and has to measure and manage her adrenaline levels and anxiety constantly in order that she can continue to converse with the world around her.

With her diagnosis came the support she needed to step up more fully into her music career and to advocate for people with autism for which she is now passionate. As she so clearly says ‘no label, no help’

She now has support when she needs it to perform her music, to talk and to speak at conferences and she is an active member of the London Autistic Rights Movement, has advised on the Government's Autism Bill and is on the executive committee of ASSERT Brighton and Hove, an organisation which provides support and information to people on the autistic spectrum and their relatives, partners and carers.

During 2008 she has performed her music with Heart 'n Soul, at the 2008 Liberty Festival in Trafalgar Square, the Victoria and Albert Museum of Childhood, City Hall and the Houses of Parliament.

She is busy, but she has all the access she needs to be so.

you can hear some of Anya's music on her website
a photograph of Nelson Mandela

Role model

We talk about role models and she chooses Nelson Mandela, remembering his happy face when he emerged from captivity.

‘He was treated terribly and he wasn’t bitter, he didn’t want to punish his perpetrators or seek revenge. Whilst his leadership wasn’t perfect, he shows leadership through an expression of his life and nature.’

As she speaks, it’s like feeling a part of the man himself, in the room, staring across me at the table.

Anya talks about the years of experimental medication and her permanent internal organ damage as a result of this.

Anya, like Mandela doesn’t seem angry, but she is firmly anti-cure in her advocacy for autism. You can read Anya's article in the Guardian newspaper website as she shares her beliefs on this matter.

Anya speaking to the Guardian Spring 2009
Barley, Anya's teddy

Child-like

We sip more tea and she then brings out a small teddy called Barley and puts him on the table.

She goes on to explain how autistic people mature differently from other people and are late bloomers.

She talks about being a child in an adult’s body and about not being cute anymore. She admits to not being good at formalities and that she is inquisitive.

Like other people on the spectrum, she might say things to people with brutal honesty and in that she is child-like in a good way.

Barley is not a teddy from childhood but a recent acquisition and she seems to celebrate and delight in this side of herself.

A bum!

The next object she brings from her bag is a ceramic Coco de Mer which is endemic to the Seychelles and it makes us laugh because it looks like a bum!

There is a side to Anya that is very humorous and dry as she talks about the diversity of her experiences and how she became a specialist in dipping in and out of different cultural dimensions at school and home as a child growing up in Crawley.

Her mum is Seychelloise and she has always had to wrestle questions around why she ‘looks white and not black’ and these experiences have made her very adept at being with different people, a valuable skill to have.

A photo of a bicycle bell

Obsession

Despite bouts of extreme insecurity which kicked in whilst she was doing her MA in Composition at the University of Sussex, Anya feels her leadership style is developing all the time, particularly in her musical career,

At first, she found it difficult to trust her instinct in making ‘pieces out of one sound’, apologising for her over interest, but is now more adept at explaining why she does what she does and feels there’s a validity, even a selling point, in the way she plays with sound. Her tutors at the time supported her to stand her ground.

She goes on to talk about sonic composition being a vehicle to explore her obsessions which are who she is and what she is passionate about: be that the sound a door makes or the ring of her bicycle bell.

She shares that she is an avid self stimmer at home - (this is part of her autism - self-stimulating one or more senses in a regulated manner which includes rocking and flapping).

Peruvian Ocharina flute

Leaving an Impression

As our time together draws to a close, Anya has made an unforgettable impression on me, yet ironically, she talks about being like a Puma: fast, independent and leaving no trace.

She brings one final object out of the bag, a Peruvian Ocharina flute given to her by someone who bought it for her ‘because they knew that she likes interesting sounds’.

She smiles in telling me this. The idea that someone would buy something for her like his, touches her.

Anya wants people to see who she is and what triggers her interest, and to use her own story to advocate for other autistic people who are still 'apologising for existing'.

It is because of this mixture of natural inclination, impairment and passion that Anya presents such a compelling leadership figure, inviting us to know and enter her world, and in turn, to dare to be truly who we are.