The below article originally appeared on Autism Daily Newscast as a 2 part interview and can be read here
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."
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".
"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."
Rosie explains that when Stanley was first diagnosed they were given a pack of leaflets to take home, the contents of which just made her feel confused and anxious.
We told Rosie that a picture says a thousand words and that all of the photographs within Understanding Stanley have so much to say and will indeed mean different things to each individual who views them. We asked her if she had a particular favourite from her book.
"That's a hard one! I like different ones for different reasons. I suppose if I were allowed to choose one observed portrait of Stanley and one visual metaphor, I'd chose first Stanley on a swing. I love this one because it's so peaceful and the framework of the swing structure says so much about the framework that he and so many others need to help them stay calm. I also like it because I know that he's incredibly happy sitting there, but others might think he looks sad. He's not sad at all, but it just brings up another point about different peoples' perceptions and interpretations of what they're seeing and how that interpretation changes depending on who you are. The other would be the swan as that expresses an enormous amount about the effect on an individual who is simply not accepted for who they are".
Rosie is no longer photographing Stanley and we asked her the reason for this.
"I think Stanley is quite a private person and I wouldn't want him to be easily recognised now. He is also a normal teenager and dislikes his picture being taken. It was never my intention to make this a life-long portrait study of an individual. None of the images are staged and I haven't asked him to pose in any of them."
Rosie has set up a Kickstarter campaign in order to help fund the first print run of her book. People can do this by ordering an advance copy - more can be found here
She also hopes that the low cost of a book like this with 64 colour images, will make it readily available to anyone and everyone who will find it helpful and will be available in libraries.
"I believe Understanding Stanley is an important book for every one of us."
We asked Rosie if she had a message that she would like to share with our readers.
"I don't think anyone would ever choose to have a child with autism because it is really really hard for everyone. However, I do think autism is endlessly fascinating (and teaches us a lot about what we take for granted) and it is here. I'm not really interested in talking about causes and so-called 'cures', others can do that. For me autism exists and is in our family and I think we have the power and knowledge within the autism 'community' to help others to understand that being autistic is not wrong, it's just another way of experiencing life. Understanding Stanley will really help people, who don't have time to read text books, understand how being autistic really is different."
"And I think all the text books on the subject are essential, but I don't think they're being read by the people who need help in understanding. This book can be passed around freely and doesn't require an enormous amount of effort on behalf of the reader and could really help. If we don't reach out to the non-autistic community with something that is easy to digest, then hopes of awareness, understanding and acceptance for those on the spectrum are a long way off..."
We would like to thank Rosie for taking the time to chat with us and we will end with some words from Rosie's book that sum up beautifully what the book is all about.
"This is not a 'what to do' book. It is a 'what it might feel like' book and as such, is uniquely powerful".
Both the NAS and Ambitious about Autism have given positive endorsements for the book and are supporting Rosie in her quest to get the book published.
Rosie's Kickstarter page can be found here
More of Rosie's work can be found on her website