Photo credit: Jesse Tempest
It was unfamiliar territory for the Visual Arts PhD Candidate, who spends most of her time in libraries, travelling or collaborating with artists on events and publications.
Skinner spent more than three years working with Dr. Christopher McIntyre and the research team on the Project. Initially, she was approached to provide her expertise in the area of photography.
As the project evolved, she worked directly with the participants, educating them on basic techniques of photography while also introducing them to a range of photographic equipment to help them capture their personal experiences.
Skinner’s role continued to expand through the second phase of the research study supporting the engagement sessions with the participants and in the collating and archiving of the images.
Participating in this initiative gave Skinner the opportunity to research past interdisciplinary and cross-disciplinary projects that included artistic practices and strategies.
Initially, Skinner was cautious. Medical research studies that incorporate art are sometimes seen as a sort of 'soft method' for gaining information, or implemented as an add-on or appendix.
“I think that reduction of art practice—art as something soft, easy, not thoughtful, critical or rigorous—isn’t useful,” said Skinner. “It’s actually quite harmful to the spirit of interdisciplinary research because it maintains outdated hierarchies of scholarship, and reaffirms what we traditionally think of as strictly quantitative and qualitative methods.”
Skinner says that there are exciting, collaboratively-driven research projects happening right now that enfold health care and art in rigorous and exciting ways. She believes that these projects maintain thought and focus on how their processes of research are carried out, and they ensure the creative impulse behind this collaboration remains at play.
Immediately upon approaching patients about the project, Skinner gained some early insights and noticed that each patient’s experience in working through the photographic process became equally important in relation to the images they produced.
Many of the older participants had fond memories of capturing images through analogue cameras, and so some of them gravitated to those formats or the familiar digital camera. Meanwhile a number of the younger participants were drawn towards the novel Polaroid, pinhole cameras and cyanotype paper methods that involved more tactile processes as they were already accustomed to digital cameras.
Each format provided its own unique photographic experience and interpretation depending on the participant using them and ultimately resulted in very different photographs.
“One of my biggest hopes was that these different kinds of cameras would have a very positive impact on people and the way they view things,” said Skinner. “I think we’ve become trained to see photography and our relationship with photography in very particular ways.”
The team also realized that the state of mind and disposition of the participant could fluctuate significantly depending on where they were in the cycle of their dialysis and that could very well affect the study. The participants needed the time, as well as physical and mental energy to use the cameras in their daily lives.
Throughout the research project, it became clear very early on to the entire team that this endeavour was more than a medical research project with the sole outcome of improving patient health when all was said and done.
“Seeing how participants photographed their daily struggles and triumphs, as well as the more ordinary and mundane aspects of life, allowed us access into intimate moments in their lives through a lens other than our own,” said Skinner.
It became very important to the team to advocate for the participants and their experience with the project, ensuring their needs, ideas, and feedback remain at the forefront of all decisions and outcomes.
“We realized we not only needed to maintain contact with the participants who generated this material but to ensure they had a leading say in how and where the images could be used. This wasn’t the kind of research project where the art experts come in and tell participants what their images mean,” said Skinner.
As a result, the research team is regularly in dialogue with the participants and learning how best to approach research of this nature.
“Navigating the information that the participants are capturing is very complex and requires communication between all involved,” said Skinner. "This is not a case of quick-and-easy translation or interpretation."
"Seeing how participants photographed their daily struggles and triumphs... allowed us access into intimate moments in their lives through a lens other than our own"
The future challenge lies in how Dr. McIntyre and the team translate the images and experience back to the participants, care providers and stakeholders in a way that has a meaningful impact on the participants' quality of life.
As there isn’t a singular method through which to translate this type of information, it can become a complicated process to navigate. From a medical point-of-view, the body of images produced through this research project could help to promote awareness of what a dialysis patient undergoes during treatment and increase the general understanding of the dialysis experience. The images could also strengthen messaging and awareness around the need for transplants, which is a very important patient-driven and patient-centred outcome.
Beyond the medical outcomes of the research project, Dr. McIntyre and the team want to hear how these images best serve their communities.
Through group discussions with the first cohort of patient participants, they indicated that they would be open to seeing their photography exhibited in the dialysis space where they receive treatment. Patients spend hours in the same room week after week and are hyper aware of the visuals that they see. The notion of being surrounded by imagery that speaks directly to their personal experiences is appealing, empowering and important. The team is currently strategizing around how to exhibit the works in a meaningful way.
As the Photo Project is ongoing, discussions continue on how the images are archived and how access will be provided to other researchers interested in this body of work. These become complex issues when considering the patients’ needs and the desire to respect and protect their privacy.