Deep in the forest, where sunlight miraculously reaches through a maze of branches and warms up the budding flowers hidden in the shadow of old trees. The footpath lies ahead like an invitation.
On the rocky ocean shore, watching the sunset and listening to the wind singing its strange incantations. A song of hope, loss, death, life, everything that ever mattered compressed in one long melodic whoosh. Like the song of a mother from a never discovered tribe deep in the jungle.
Lying on my back in the field, watching the clouds move across the sky and transform as they pass. A giant shape shifting show on display for anybody and for nobody. Just watching. Just breathing. Just lying in the sun along with all other life forms.
It’s been a few weeks now that I’ve been working on my photo project focusing on autism. So far I’ve visited eight participants, some of them two or three times. I’d like to share some observations on how it is to actually do this as compared to what I imagined or expected.
I need to start with this: it’s amazing and humbling to see the willingness of people with autism and/or their families to make time for me and open their personal space and vulnerability to me. It takes courage to open up. It takes trust. I feel privileged to receive this trust. At the same time, this creates an expectation and a pressure on myself to be up to the task. “Don’t screw this up, man!” It’s my voice, nobody else’s.
Contrary to what I was expecting, most participants are not overly concerned about data use and data privacy once they’ve agreed to be part of the project. It’s my responsibility to make sure that they formally agree to have their pictures taken (signed consent forms) and that their personal information is not misused. This is all the more important when children are involved.
In the autism community there is a great need to be seen, to be witnessed, to share one’s story, to connect. Many families are socially isolated as their lives revolve around needs of the person with autism. Adequate support, from sport activities for kids to respite time for parents, are scarce. Caring for a child with high support needs is a lonely road. Health insurance covers therapy only partially. Some therapeutic activities are excluded from insurance altogether. There is a widespread feeling of not being seen, listened to, important enough to have proper support.
In my project, I want to capture what’s happening without scripting and moving participants around. In some cases, this comes naturally. During my visits, the families propose some activities to their kids. We move from one room to another. We go outside for a short walk. The interaction that develops spontaneously offers plenty of opportunity for photography. In other cases, my subject does not want to interact, play, hug their parents. They want to eat, sit on the sofa with their tablet, move incessantly through the room. This is also them. It’s part of their life. I take it as such and I photograph whatever is there. It does not have to be spectacular. It doesn’t have to conform to my expectations.
Most of the work comes after the visits. There are audio recordings to be transcripted, narratives to be written, photos to be edited. There’s the pressure of doing justice to each of my subjects by publishing things that depict their life honestly while showing respect and avoiding anything potentially demeaning. There’s also the self-questioning and self-doubt, the “am I really up to this” moments.
While all this is very much about autism, the relevance of the project is not limited to autism. What happens with my participants says something about the social acceptance of some behaviors and ways of being. It says something about the support systems we build and about the accessibility of support services, whenever they exist. It says something about the way we understand normality and they way we include or exclude people from our circle of concern based on this understanding.
I’ve titled this project Through the Looking Glass. I borrowed the title of Lewis Carroll’s book because it provides a good metaphor for the whole effort behind the project: exploring a world that is at once recognizable and unfamiliar, as if looking out from inside a mirror. As Alice travels thru time and ‘through the looking glass’, she learns how to make sense of the strange and unfamiliar, and her understanding of what used to be obvious and familiar also changes.
I am starting a weekly series focused on stories built around single photos. I will keep all stories under 100 words. Being concise is a skill, probably one of the most difficult to acquire. Stories can be directly linked to the photo (how it was taken, what was happening) or they can simply use the photo as a writing prompt.
For today, I chose this grainy photo on a windmill in a small nature reserve close to where I live.
Almost anything can be improved by removing stuff. Simplifying it. Getting rid of the clutter. Then getting rid of even more clutter, which at first glance may have seemed important.
It works with books, photographs, relationships, or lives.
We are compulsive hoarders of sensations, emotions, objects. We commit to impossible schedules and we have impossible ambitions. We want to be everywhere and part of everything. Not miss out. Not be left out. We live on the run and then, from time to time, we inevitably break down.
All this unchecked wild growth. This gracious abandonment. These plant seeds flying around, offering themselves to anybody, offering themselves to nobody. This whirlwind of life coming together in this very moment, unplanned yet fully in sync. Not asking for a witness, not needing to be acknowledged, just being there.
I get off the train feeling thirsty and scattered as if I couldn’t put myself together and I left an undefined part of me in that compartment. I breathe in the cold morning air, petting a stray dog, and then I start walking on the side of the road towards my destination. Apart from the single employee of the train station, with a uniform that he seems to have worn continuously for the last two decades, and a couple of alcoholics having their first vodka and beer at the tiny bar of the station, there’s nobody around.
It’s 4 am and it feels like the day will never come. It may come on another planet, where things still go on the way they always used to. The sun will rise and the myriad creatures of that planet will bask in the morning light, stretch, and warm their bodies.
Down here, it feels like the outside is a huge underground hall.
I watch through the window the milky fog advancing through the houses, like a thief in the dark, swallowing them one by one.
There’s a special quality to loneliness at 4 am. You don’t simply feel far from the others, or detached from them. You feel as if the others are not there anymore. The planet has been silently struck by a deadly pandemic overnight. For some incomprehensible reason, I am still here to witness the morning after.
I would like to say I only have myself but the truth is that I don’t know what I still have – and who is this me having it. The contours of my sense of self are dissipating and hovering around the room. Slowly floating away through the open window. I am not happy. I am not sad. I am simply not quite there anymore.
It’s 4 am and all the memories that could hurt me, all the ghosts of the pasts, are already here. Watching me with their small beady eyes from the dark corners of the room. Not attacking, just letting me know they are present.
Outside it’s the dawn of a subterranean, fake, engineered appearance of a day.
Signaux humains à travers le brouillard
Il est 4 heures du matin et j’ai l’impression que le jour ne viendra jamais. Le jour va peut-être arriver sur une autre planète, où les choses se passent toujours comme avant. Le soleil se lèvera et les myriades de créatures de cette planète se prélasseront dans la lumière du matin, s’étireront et réchaufferont leur corps.
Ici, j’ai l’impression que l’extérieur est une immense salle souterraine.
Je regarde par la fenêtre le brouillard laiteux qui s’avancer parmi les maisons, comme un voleur dans le noir, les avalant une à une.
Il y a une qualité particulière de la solitude à 4 heures du matin. On ne se sent pas simplement éloigné des autres, ou détaché d’eux. On a l’impression que les autres ne sont plus là. La planète a été silencieusement frappée par une pandémie mortelle du jour au lendemain. Pour une raison incompréhensible, je suis toujours là pour témoigner le lendemain.
Je voudrais pouvoir dire que je n’ai que moi-même mais la vérité est que je ne sais pas ce que j’ai encore, et qui est ce moi ayant des choses. Les contours de mon sens de soi se dissipent et flottent dans la pièce. Ils flottent lentement à travers la fenêtre ouverte. Je ne suis pas heureux. Je ne suis pas triste. Je ne suis tout simplement plus là.
Il est 4 heures du matin et tous les souvenirs qui pourraient me blesser, tous les fantômes du passé, sont déjà là. Elles regardant avec leurs petits yeux globuleux depuis les coins sombres de la pièce. Elles n’attaquent pas. Elles me font savoir silencieusement qu’ils sont présents.
Dehors, c’est l’aube d’un jour artificiel et souterraine.
Maybe it’s the rain. Maybe it’s the lack of good sleep. Maybe it’s the alignment of planets. The evil eye. The karmic debt. The fury of the Aztec god Quetzalcoatl. A short circuit in the ancient parts of my brain, those that I share with lizards and frogs.
Maybe it’s none of this crap.
Whatever it is, I feel like a scared soldier, hiding from a war that ended long ago. Feeling all his old wounds come alive with the slightest change of weather.
It’s not so much the hurt. It’s being alone with the hurt.
This cosmic way of being out of sorts.
Wearing your inside out and making the impossible to hide it.
This all too familiar vulnerability. The constricting feeling in the chest, as if the walls are closing in.
The feeling of being cornered by something you must absolutely escape. Fight or flight. Escape at all costs.
Choose your poison and drown in it. Your favorite toxin, your sickening sweet self-sabotaging story. The one you hate but still cannot let go of. Your preferred “I’m shit and I’ll never be enough” narrative.