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.
You can visit the project site here.