I created the portrait Roger at the University of Nebraska Medical Center (UNMC) as part of a research study entitled Portraits of Care (POC) (2006–2008). Dr. Virginia Aita, associate professor at UNMC’s College of Public Health, and Dr. William Lydiatt, UNMC head and neck surgeon, invited me to draw and paint not only patients but also their caregivers.
POC used portraiture to investigate ideas about care and caregiving. The study included 46 subjects, 26 patients, and 20 caregivers. With the help of these consenting participants, I created over 100 artworks in various media.
Roger was being treated for amyotrophic lateral sclerosis (ALS). I initially felt self-conscious when drawing Roger. The unforgiving nature of his disease meant that he was not only unable to speak but also lacking in the capacity for self-expression. Tension, however, dissipated once we started working on the drawings. By drawing Roger, I became more sensitive and attuned to his expressions. The silence we worked in was not an empty void, but a vessel for enhanced awareness and acknowledgment of each other’s presence. The intimacy and sensitivity engendered during our portrait sessions were even more profound without the convenience of easy verbal interaction. The way we related to one another, on either side of the easel, was as immediate, instantaneous, and constructive as any verbal interaction. The resultant images we made continue this “dialogue,” communicating the same silent focus within which they were created, with new audiences.
In POC’s exhibition catalogue, Roger’s wife and caregiver, Dolores,1 described how their initial participation in POC was based on hope that the pictures would give an insight into the private aspects of living with ALS:
Roger hoped that through the drawings of him, people would see the strength of the human spirit; that, despite the limitations of disease and disability patients can continue to contribute to society and inspire others to do the same.
I witnessed Roger living with a grace that belied the physical and emotional challenges he faced. Our relationship was underpinned by the aesthetic interaction that permitted us to work together in the quest to create a portrait that allowed others to experience a fragment of his world. It was a huge privilege to be able to witness the poise and strength that emanated from Roger and Dolores. The interactions we shared were an enduring gift; they were generous, empowering, fascinating, and often profound. The portraiture process was instilled with an intimacy and power that was fundamental to the images created, the messages they conveyed, and the experiences they exemplified.
Using portraiture as a research medium allowed us all to access the world of the subject, a world as distinct and ordinary as our own. Such insights “engage our own vulnerabilities, hopes, fears and dreams with theirs—and it is at this intersection that one is able to learn about care and caregiving.”2 POC attempted to seek universal meanings of illness and caregiving; the project asked, What happens to our understanding of the relationships between patients and caregivers, and our understanding of illness and care, when our method of connecting and understanding is informed by aesthetic sensibilities?
Research findings showed that the POC exhibit facilitated viewers’ ability to acknowledge the potential for identity transformation, the centrality of the idea of mortality, the importance of empathy and compassion in care, and the presence of hope despite adversity.2 POC and other studies I have participated in suggest that portraiture in a medical setting may offer therapeutic benefits to patients and valuable applications for teaching topics related to the delivery of clinical care and the nature of doctor–patient interactions.3,4 In POC we created artworks that relied on reflexivity, community, aesthetics, and ethics to generate narratives and an aesthetic whole that seek not just to inform but also to inspire.
Mark Gilbert, PhD
M. Gilbert is a postdoctoral fellow, Medical Humanities (HEALS) Program, Division of Medical Education, Dalhousie University Faculty of Medicine, Halifax, Nova Scotia, Canada; e-mail: markgilbert@Dal.ca.
1. McGraw H. Here I Am and Nowhere Else: Portraits of Care: Works by Mark Gilbert. 2008:Omaha, NE: Bemis Center for Contemporary Arts; 87.
2. Aita VA, Lydiatt WM, Gilbert MA. Portraits of care: Medical research through portraiture. Med Humanit. 2010;36:5–13.
3. Gilbert MA, Lydiatt WM, Aita VA, Robbins RE, McNeilly DP, Desmarais MM. Portrait of a process: Arts-based research in a head and neck cancer clinic. Med Humanit. 2016;42:57–62.
4. Gilbert M. Experience of portraiture in a clinical setting: An artist’s story. J Appl Arts Health. 2014;5:135–150.