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.

out of synch

Some brief background on M from the beginning:. She was born prematurely but not dramatically so, though her birth was fast to the point of madness (19 minute labour) and in spite of no evidence I have never been able to shake the gut feeling that some vital spark failed to connect or was extinguished in that rapid entry, some momentary lack of oxygen etc the possibilities are endless and pointless but in all the years of wondering and searching my mind always returns to that moment when she arrived. She was slow to walk, she never crawled, by three she still couldn’t speak, by four she had a few single words, they tested her hearing, they suggested autism many times, except her clear need and ability to connect to other people threw a curveball that made it very difficult to place her on the spectrum. We got back one report written when she was 4, almost 5 that said she had the cognitive ability of a ten month old. I remember crying at my keyboard while typing an upbeat, joke filled email to a friend about that one, saying oh well what do they really know… I had no idea how right I was. We moved countries so her difficulties in the start of the school were put down to language issues but after a year it became obvious that they ran much deeper than that, it was the beginning of a long, ongoing journey to try and classify M in some medical way. We made the physical and mental transition from the regular school system to the special needs one, we adjusted the whole idea of ‘future’ and watched in wonder many times when she learned to do things that were previously thought beyond her.We had the good fortune of finding a truly special school where she has blossomed and we have found like minded families and teachers, mostly we have had a hell of a lot of fun so don’t let the mention of tears on the keyboard fool you into thinking otherwise. A decade has passed since that devastating report, we have met and spent time with pyschologists, neurologist, psychiatrists, speech therapists, music therapists, wonderful and terrible teachers, social workers, pediatricians, the whole gamut of professionals and in three different countries. We have investigated, tried, flirted with and rejected many alternative therapies, read reams of research, articles, spent far too much time on the internet, the lack of diagnosis for M that would help us unravel the mystery of her mind, is most assuredly not for lack of investigative effort.

SWAN, the feathered kind.

SO the project as mentioned is to be called SWAN, after the acronym for syndrome without a name, can't think of a more perfect title really. I've always had a fascination for the creatures too, when I was little I read and re-read the Hans Christian Andersen fairytale, The Wild Swans many times, on many levels it's quite a horrific tale for kids as most traditional fairy tales are. The cursed brothers turned to swans, the mute heroine who is to be burned at the stake but the flames turn to flowers, so much powerful imagery but the part that struck me was that to save her brothers and return them to human form she must gather nettles and knit them into shirts.Nettles were something I was stung by a lot as kid playing in the Scottish highlands and knitting was something my Granny taught me. She kept a basket in her house and when we would visit her on Sunday, my sisters and cousins and I, were expected to get our wool and needles out and knit, I suppose it was a way to keep 7 wee girls quiet and occupied, feels rather fairytale like itself in the telling some 40 years later but the word Swan triggered a powerful memory for me of sitting on a stool knitting scrappy squares but imagining I was fusing nettles together to transform the swan princes back into boys. If only I could knit the right pattern now to unravel the mystery of M's difficulties, the nettle stings would surely be worth it.

S.W.A.N vs.SWAN

I really should have titled this blog the great delay as apparently 2 - 3 years between entries is as fast a pace as I can manage, same old reasons, not at all convinced anything to see or say here so the urge to pass by rather than sit down and post is an overwhelming one but as mentioned in my last post which was a mere 6 months ago which by my standards is approaching prolific there is a project underway that began as a series of photographs of M but has somehow morphed into something more collaborative. The background is this: Paola is a friend, a very talented friend, she first took a photo of M for her series Growing Up, in it M’s face is obscured by a lamp she is holding, a large disc of light that almost covers her head, to say that Paola has gift for visual metaphor is an understatement and then some. I don't recall now how much time went past between that image and the beginning of Swan, for a while we thought it would be good to have Paola make a series at M’s school as I felt that if she could capture M’s unique difficulty in such a beautiful way then that world of kids with special needs is one that she could shed light on in an utterly empathetic way but for various reasons to do with privacy regulations etc it just became too difficult. Somewhere along the line the focus came back to M and I shared with Paola that we were scheduled to have an overnight EEG exam to observe M’s brain patterns while sleeping followed by an MRI scan of her brain, Paola came along and photographed the experience. In the images she made she brought beauty and understanding into a strange world of medical technology and research as well it must be said as making me laugh when I might otherwise have cried from the stress of tests that have no answers. When I saw those images I realized that while I may never find the words that can help me make sense of all of the wonders and challenges of having a child like M. Paola through her lens captures most of it without a single word. The project is called SWAN the acronym meaning syndrome without a name taken from this website http://www.undiagnosed.org.uk. More on lack of diagnosis in another post