How models can translate the lived experience of rheumatoid arthritis into material and form

  • Peter Marsh

Student thesis: Doctoral Thesis


This research proposes that the conceptualization of embodied, abstract emotional experiences such as pain, which despite being multi-modal, non-visual and subjective, have the potential to be communicated visually using model making, as it is traditionally understood in the fields of Architecture and Design. To be able to do so, this research has prescribed a new methodological approach where a Gadamerian hermeneutic understanding of intersubjective interpretation has been married to theories drawn from embodied cognitive linguistics, sign language and translation studies.

This novel approach to design research was undertaken within the field of Health Sciences to produce metaphorically provocative, descriptive models of the lived experience of people with rheumatoid arthritis to help bridge the gap in understanding currently perceived in the public realm.

Rheumatoid arthritis (RA) a serious and growing public health problem, yet despite numerous campaigns by leading charities, misconstrued perceptions of what RA is and what it is like to live with, abound in the public imagination. The reason that this raises such concern is that preventive actions in the early stages of the disease make it easier and less expensive to treat; put more explicitly, knowing rheumatoid arthritis saves lives.

This necessity for understanding provided the motivation for this research and the conception that models, generated with the participation of people with RA, could lead to further insight into the lived experience of RA and provide an as yet uncharted means to communicate the human condition.

The thesis outlines contemporary visual approaches to describing RA in trying to educate the wider public and explains why they are limited in their current form to the very clichés and stereotypes that they wished to breakdown. In doing so, the research highlights the potential of models as an alternative in conveying the complexity of lived experience. The role and value of models is laid out in detail through a critique of historical and contemporary perceptions, whilst a definition of the model in research, placed within a theoretical context, provides the basis for its application in practice. The models made as the culmination of the analysis are discussed in detail in the light of this epistemological understanding.

The study involved three participants, all women above 40, working in the UK Higher education field, and all living with RA. The gender of the volunteers was coincidental, but the age, employment and condition were all requested in answering the open call. Their involvement came through in-depth conversations, where they traced their history with the disease, offering a portrayal of the day-to day experience living with it. Although three maybe considered a small sample size, the engagement with these conversations was involved and layered with numerous stages of analysis, reflection, and practice; thematically analyzed in detail, coded by metaphoric association, abstracted through drawn analysis with drawing, which provided the platform for visualization into the models that represent the culmination of the analysis. This methodology and the approach to analysis is described in detail, outlining the different ways in which creative visual methods, such as sketching, were used to understand the text, and explaining the increasing abstraction in the analysis as part of the development of a visual language and as a visual reflection in the design of the models.

Due to the novelty of the approach, the evolution of the thesis design is discussed within a historical context from the pioneering work on visual perception by James Gibson, its relationship to art and language through the thoughts of Rudolf Arnheim through to the multi modal appreciations of communication in translation studies by Jeremy Munday and metaphor theory by Zoltán Kövecses

In conclusion, the findings from this research raise awareness of how material culture as a tool of communication is undervalued in research practice, the consumer product market aside. It provides a means to navigate visual communication in design in a rigorous, applicable manner, and, whilst suggesting the potential benefits this could offer, and the drawbacks it imposes, in describing the complexity of human experience, the outcomes point to the value of the model as an aid to conversation and through that to understanding. Proposals are put forward for further study with the potential for further analysis of the models in the public realm.
Date of AwardJan 2023
Original languageEnglish
Awarding Institution
  • University of Brighton
SupervisorKay Aranda (Supervisor), Ole Hagen (Supervisor) & Charlie Hooker (Supervisor)

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