May 23, 2014

copyright Rosie Barnes
copyright Rosie Barnes

Rosie Barnes, London, UK – is a documentary photographer and author of Understanding Stanley – Looking Through Autism. This is a photobook, made over a period of 14 years, about her eldest son Stanley, now aged 17, who is autistic. Stanley was diagnosed in July 2000. As yet the book is not published, as Rosie needs funding in order to do so, but has set up a Kickstarter campaign for this purpose. £14,700 needs to be pledged (by way of advance-orders) by June 5th. So far £8,050 has been raised.

Rosie describes Understanding Stanley as:

“A kind of poetic, visual reference book about autism – a mixture of observed portraits of Stanley (from 18 months to 15 years) and images that represent autistic characteristics and experiences. I wanted to give the autism community something beautiful, a quiet and peaceful book that is also useful and informative and has space to breathe. It’s not going to tell you everything you need to know about autism, but it will give you a starting point that has to be the most important one – what does it actually feel like to be autistic. I wish I’d had something quiet and peaceful to allow me to sit and think slowly about it all, to start to take it all in. Sometimes a lot of words are not where you need to begin.”

Animal mobile, copyright Rosie Barnes
Animal mobile, copyright Rosie Barnes

Describing Understanding Stanley simply as a photobook does not do it justice, this is so much more than a series of photographs. It is an extraordinary, unique and highly moving book that has a real message to convey and does it in a powerful way:

“I want to make the invisible visible and I suppose I want people to feel, not just to think.”

The images are supported by brief comments and quotes from individuals themselves on the autism spectrum or those who work in supporting them, giving a unique and powerful insight.

Autism Daily Newscast had the great pleasure of interviewing Rosie in order to learn more about the book and the lady behind it.

Rosie makes reference to the fact that over the years many people have commented that Stanley does not ‘look’ autistic; she wants Understanding Stanley to show how autism is a hidden disability.

‘There is no visible sign. No wheelchair, no hearing aid…to anyone who might be looking at him, judging him’.

We asked if she had encountered any hurtful comments or prejudices when out with Stanley.

“We honestly haven’t had many hurtful comments and I honestly don’t mind people looking at Stanley briefly. I think parents can sometimes be incredibly defensive when I think actually people often just need 5 or 10 seconds to process what they’re seeing. I detest all those ideas for T-shirts that say things like ‘My child’s autistic, what’s your problem’. Yes, I know people do have terrible encounters but I wonder how much they would dissipate if people were allowed to just look for a few seconds. We all know about autism, we should let others discover it too. I normally smile at people who look (not stare!) at Stanley. I’m proud that he’s able to show people another way”.

Fake pink flower, copyright Rosie Barnes
Fake pink flower, copyright Rosie Barnes

She explains:

“If Stanley is running his fingers down the glass window on the tube train, I would expect people to have a look at him, because it’s not what you always see and if we’re going to get ‘others’ on our side, in understanding and accepting autism as just a different way of experiencing life, then they have to be able to have a closer look and see what is actually going on. What I do find incredibly hurtful though is when someone moves away from him because they find his different behaviour so threatening.”

Rosie says this sometimes happens on the tube. People will sit next to Stanley for one stop but will then move to another seat further away from him.

“It’s unbelievably subtle – he might just lean forward slightly and look at the end of his fingers, but people can’t even cope with that level of ‘difference’. It’s like someone’s stuck a knife into my stomach, I want to tell them that they couldn’t be sitting next to someone who is less likely to hurt them but I am unable to do that in front of him. This didn’t happen when he was a child, but now he’s a young man, somehow he appears a threat. It’s awful really and more power to my belief that ‘awareness, understanding and acceptance’ are all!”

Rosie describes her book beautifully in that it gives the reader ‘space to breathe’. We asked her to elaborate:

“I think in any situation when you’re learning about anything new, it’s essential to be able to pause and process and take it in. I wanted to give the autism community a starting place that was something beautiful yet really enlightening and useful. The images in the book don’t all have accompanying text because I think it would end up being overpowering, and if you spend a bit of time with the book, the pictures will tell you so much without needing any words and I believe, as a photographer that that is the most powerful way of reaching people – on an emotional level – particularly on a subject as complex as autism.”

Part 2 continues here

Rosie’s Kickstarter page can be found here
More of Rosie’s work can be found on her website


About the author 

Jo Worgan

Jo Worgan is a published author, writer and blogger. She has a degree in English Literature. She writes about life with her youngest son who is on the autistic spectrum. Jo tweets (@mummyworgan) and is also a freelance columnist for the Lancaster Guardian. ‘My Life with Tom, Living With Autism‘ is her second book and a culmination of her blog posts, and available on Kindle now, along with her first book, Life on the Spectrum. The Preschool years.

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