A dry and silent world: living with hidden disabilities
To explore potential for artistic works that inquire into the experience of dry mouth and hearing loss
'NO JOY' Text that incorporates immunohistochemistry of a human eardrum detailing a person’s experience when faced with 80% hearing loss. Image: Emma Barnard
What is the power of human sensation? How does our ability to hear, salivate and taste affect everyday life? It is typical that patients suffering or surviving head and neck diseases continue to be impaired by disabilities and sensory disorders that are often overlooked by clinicians and patients alike. Not least because our senses of hearing and taste are hidden, by virtue of their anatomy. The theme of ‘hidden disability’ came to the project team in their observations of vulnerable patients, in particular the elderly, those suffering dementia, Sjogren Syndrome and survivors of head and neck cancer. Too readily, aspects affecting the quality of life of these patients are not recognised or even ignored.
Hearing and salivation are taken for granted by the public, by patients and even by clinicians. As such the team recognise a need to raise awareness especially amongst clinicians of the hidden nature of hearing loss and dry mouth amongst vulnerable patient groups. The aim is to develop this project by combining 3D printing of the relevant organs to explore their shape and structure, alongside photography to delve into the hidden aspects of these disabilities and how they affect patients' daily lives.
A dry and silent world: living with hidden disabilities will seek to encourage a three-way dialogue between patients, clinicians and academics mediated and documented through art.
Image illustrating the 'blind contour' drawing process. These are exercises that teach learning to see through sense of touch and are designed to improve the researchers visual concentration. Image: Emma Barnard
Professor Abigail Tucker - academic lead
Professor Abigail Tucker has a research lab in the Department of Craniofacial Development & Stem Cell Biology within the Dental Institute at King's College London which she has run since 2002. The lab focuses on the embryonic formation of the face, particularly the jaw, teeth and ear - structures all linked during development. The lab is interested in how these parts of the face form during normal development and what goes wrong in the case of birth defects.
In addition, the lab studies how evolution shapes our faces to understand diversity. The lab has produced over 100 research papers and is currently funded by the Wellcome Trust, Medical Research Council and Action on Hearing Loss. The Tucker lab seeks to share their research as widely as possible through school visits, festival stands, participation in documentaries, and through collaboration with artists.
Emma Barnard MA (RCA) - artistic lead
Emma Barnard is a visual artist specialising in lens based media and inter-disciplinary practice and research within Fine Art and Medicine. She has worked extensively with ENT (head and neck) consultant surgeons and their patients to explore through visual means the patient experience and the doctor/patient dynamic. The resultant artwork is currently being exhibited widely in galleries, universities and hospitals in the UK and internationally most recently in a solo exhibition in Berlin. She presents her work at conferences within the medical and medical humanities fields such as UCL and King's, most recently at Cambridge University for CRASSH (Centre for Research in the Arts, Social Sciences and Humanities).
The experience gained from working within medicine is now influencing the field of medical education; at King's Medical School Emma has worked alongside medical educators on both pilot projects and workshops which introduce creative thinking into the medical curriculum. She has also led on a pilot project at Surrey University within the Department of Medical & Health Sciences.
Emma sat on the Arts and Ethics Subcommittee at the World Congress in Bioethics 2016 and is a member of the Arts and Ethics Research Group (AERG) at the Mason Institute, University of Edinburgh.
Dr Mona Mozaffari - project partner
Dr Mona Mozaffari is an ear, nose and throat Specialist Registrar and a PhD student at the Tucker lab. Mona completed her medical training at Oxford University and has worked in London and Oxford hospitals in her postgraduate years. Her research interest is the developing ear drum and its relation to the middle ear disease Cholesteatoma. How is disease determined by the shape and nature of a body part such as the ear drum? How do you build an ear drum from scratch? And how does it rebuild itself throughout life? Her research begins to answer questions such as these. As well as her patients and research, Mona is passionate about teaching medical students, the history of surgery and Arts in Medicine. Mona’s PhD is funded by the Medical Research Council.
Dr Tathyane Teshima - project partner
Dr Tathyane Teshima obtained a Bachelor in Dental Science Degree in 2011 at the University of Sao Paulo, Brazil, when started her PhD in the Department of Oral Diagnosis. Her interest in dry mouth syndrome and saliva biology has led her to understand the development of its secretory organs, the salivary glands. She joined the Tucker Lab in 2013 as a visitor PhD student for over a year funded by the Science Without Borders scheme (CNPq) and Sao Paulo Research Foundation (FAPESP) from Brazil. After PhD completion, she obtained a short term Post-Doctoral position at Prof Tucker's Lab funded by the Company of Biologists, UK. Currently she is a Post-Doctoral Fellow at the Dental School of University of Sao Paulo, still working in close collaboration at King’s College London to investigate further the development of salivary glands. She also holds an honorary clinical fellow position at the Department of Oral Medicine at Guy's Hospital, developing aside projects with dry mouth and head and neck cancer patients looking at microvascular patterns in the mouth. As part of Tucker Team, she became very enthusiastic about public engagement events to share what they do in the lab and also about exploring the artistic side of their research.
Doris Cuckovic - project partner
Dr Doris Cuckovic obtained her DDS from the University of Rome “La Sapienza” and after completing an MSc in orthodontics worked as a clinician in Italy. Her interest in regenerative dentistry led her to join the Department of Craniofacial Development & Stem Cell Biology at King’s College London and to enrol in a 4 year PhD programme under Professor Abigail Tucker’s supervision. The aim of her project is to gain insight into the signalling pathways controlling salivary gland development. Doris is currently investigating salivary gland hypoplasia in Gas1 mutant mice focusing on the role of innervation in salivary gland organogenesis. She loves involving, listening and interacting with public and considers this a very rewarding aspect of her experience.
Glass slide showing brain tissue. Photo by Emma Barnard
A dry and silent world: living with hidden disabilities is a collaboration between King's College London's Centre for Craniofacial & Regenerative Biology and Emma Barnard, brokered and supported by the Cultural Institute at King’s.