is it ok to expose M

ACCESS:One of the reasons I am so fascinated by the idea of capturing M in Paola’s images is that as a photographer she seems to have an uncanny ability to shed light on the inner aspects of personality but in the end do I really know so much less about the inner life of my child who can’t process or articulate information than that of my other intelligent and articulate child who like all teenagers keeps his inner life strictly out of his parents sight. MOTIVATIONS/PRVACY/EXPLOITATION/CREATIVITY M is beautiful but it’s a burden when it becomes the focus of what people notice about her, a mask to her difficulties but I think most people of physical beauty use their beauty in a knowing manner with M it’s the not knowing how much she understands the power of it but there is no question she is aware of it, M is 14, if she didn’t have developmental disabilities would we have let her model like her cousin V or perform on stage with adults like her cousin L, or publish her own story like her cousin M, so hard to know, everything is always viewed through the ‘if’ prism. Here’s a fact, we have been stopped on the street and given business cards for model agencies twice obviously we didn't follow up but the point is that this is a child who has always attracted attention, who loves to look both in the mirror and at photos of herself, she may not be able to verbalise it but emotionally for sure she is a full participant in this project. Her outfits are chosen by her, she does her own make-up (unless its for Halloween!), none of the ‘styling’ comes from anyone but her, Paola is making a documentary here not a movie. Paola has known M for a long time, M has known P’s kids since they were born, she is completely, naturally herself around Paola. In my view, Paola, in her work shows her natural affinity for innocence and for the importance of creating safer, kinder ways to live, to soften the cruel edges while thoroughly exposing them at the same time, she wraps the vulnerable in protective layer but one that is gossamer thin and cast at a precarious angle. Her world is one where ’pink dreams’ can still exist. M has that same affinity for beauty, a rose-hued delight in all that surrounds her, I see a clear line running from photographer to subject, there is a place that they both dwell but I do not. I don’t know if it’s because I am M’s parent or simply a difference in world views, tastes, experiences no bigger or smaller than all of the other differences between people, disabled or not. There was a great deal of conflict for me about the privacy issues in letting all of this go out in the world. Wise and clever people asked me to consider the purpose of the project and the motivations of the photographer. They, it should be said, had never met Paola and so wondered I suppose if she saw M as solely a captivating image in the same vein as a beautiful sunset and in turn perhaps felt I was offering up M’s inner life for public view knowing that it could be interpreted in strange ways by strangers . “This is a child with a right to privacy, it’s not about art or creativity” read one piece of advice. So what are we doing with SWAN, Paola and me and M? We are celebrating M, exploring a particular period of time when she is at a vulnerable and difficult age. We are exploring the pressures brought to bear upon young girls made all the more difficult for one who cannot process conceptual ideas. We are exploring all of the wonder and beauty that she brings to our lives. We are escaping with her through play and dance and music and dolls and clothes and make up. Emotionally and hormonally she is a teenager but does not yet read, she has no idea that a span of seven days constitutes a week. She loves pop music, dressing up as Lady Gaga is one of her passions but she will pause in full wig and makeup to tenderly feed and care for her baby dolls and teddy bears. All young teenage girls can possess a Lolita quality that can be deeply disturbing to adults with M in her total innocence the vulnerability of that contrast can be overwhelming. Rightly or wrongly Paola captures that fragile balance between her utter innocence and the fact that she has ‘normal’ interests for her age, we cannot escape the real world, she embraces what she sees and we try hard to protect her, I have no desire for her to be hidden from view or sealed in a bubble either. The well meaning person who cautioned me against the idea that I would allow an art project to be made seemed to view creating art from M’s life as terrible negative but here’s the thing, M has an artist father, she has grown up surrounded by creative people. In her family life art and creativity are hugely important, neither I nor her father have a problem with the idea that one of the defining aspects our family life (having a special needs child who has no diagnosis of any particular syndrome or disorder) would be chanelled into or dealt with through art. It is after all how we make sense of almost everything the mirror you hold up to understand the abstract reflections of everyday. Creating is something M does endlessly, she will paint draw, glue, cut, fold, bake, decorate for hours. For me there is a vital connection between writing and parenting, the need to find the words is a daily struggle but the search for them and processing of them is essential to me. Equally for M’s father the need to paint and create art in many mediums is a lifelong obsession, he is a great Dad but he is also an artist who needs time alone to work and the two are inseparable facts. M’s brother writes and draws so it is no surprise that we would have no issue about participating in Paola’s art as a way of understanding more about M. I don’t know then if the very thing I was warned against turns out to be part of the motivation. Does art have to teach? I don’t think so, does this series of photos have to illuminate the entire world of children like M, of course not. Will it perhaps in unexpected ways let us glimpse at more of her inaccessible inner life I hope so, will it let people pause for a moment and wonder who is that child, why are we looking at her brain as well as her beauty, perhaps. The truth is that there is no way of knowing how people will interpret it. I do know that she teaches us on a daily basis how to live in the moment, to see the world as an enchanted rather than ugly place. Those are the things I see in Paola’s project with M.