Narrative medicine and the arts: Four perspectives on a student workshop (Essay 2)

This mini-series of short essays by Jane Hibberd, Andy Hibberd, Winifred Lee and Emily Player offers four perspectives on an innovative example of embedding medical humanities within the undergraduate curriculum for medical students at the University of East Anglia. The series is published over four days (5th-8th October 2020), and each day we feature the reflections of one of the collaborators. In this essay, the second part in the series, Jane Hibberd, a Lecturer in Occupational Therapy at UEA, reflects on her role in a collaborative arts workshop which allowed students to explore both the lived experience of being Deaf and the kinaesthetic experience of engaging in lino-cutting and printing. 

Reflections from the Expert by Experience and Lecturer in Occupational Therapy – Jane Hibberd

I am a Lecturer in Occupational Therapy, I am Deaf and wear two hearing aids, relying on sounds and lip-reading to help me understand and process the spoken word. For me, delivering my usual narrative on deafness for the medical students is an incredibly important date in my calendar: I like to think that it helps them understand the lived experience of what it is like to be Deaf. After all, if you are not Deaf yourself, surely you can only imagine what it must be like, how can you truly know otherwise? Also, I emphasise to the students that they will come across people who are Deaf – from all walks of life – at all stages of their training and eventual career as a doctor.

Print by Emily Player, depicting sound waves.

By the way, that juxtaposition between lecturer and expert-by-experience feels weird at times – which ‘hat’ do I wear?  For me, the most important ‘hat’ during this session is my expert-by-experience hat, although I may slip into my lecturer mode, and draw on my professional knowledge, at times.

Jane’s digital hearing aid. Image by AJ Hibberd.

I always start the session by explaining my early formative years and what it was like growing up and living with deafness, describing the incredibly important role that my parents played and their positive attitude towards my disability. The role of the audiology department, speech and language therapist (SaLT) and teachers at school are also explained. As part of my talk, I show the students the books that were used to develop my speech and command of the English language. A priceless artefact is shared with the students – the Communication Book – comprising a series of delightful notes between the SaLT and my mother regarding my progress: an honest account of the realities of living with deafness.

The rest of my talk details the realities of living with deafness and charting my training as an occupational therapist, my hobbies (grade VIII clarinet and ballet), current challenges in the workplace and the all-important attitudes of others which, seemingly, can either serve to ‘destroy’ my personal identity (some hope!) or reinforce my worth as an individual human being with a right to live on Planet Earth. An example of how attitudes can be detrimental is this:

Me: ‘My research methodology is conducted in this particular way to enable me to manage data collection and analysis because of my hearing needs.  The methodology is sound and my management of data processing is an example of reasonable adjustment.’

Examiners: ‘No, this is unacceptable therefore we cannot proceed with approving this.’

This incident illustrates a perfect example of a fundamental lack of understanding of the needs of the person with the disability and that they may need to adjust their ways of ‘doing’ and ‘being’ because of their disability.

It is important to me to deliver this talk on an annual basis because I feel a moral and ethical responsibility to share my lived experiences of deafness to help doctors help their patients and the people they work with. I remember another incident occurring when I visited my GP. They were tapping away on their keyboard, intent on asking me questions and typing my responses into the computer. I politely asked the GP to stop typing because I could not hear over the noise of the tapping of the keyboard, in addition, I wanted the GP to look at me so that I could read their lips. The GP duly obliged…what a difference the consultation made – in the end, a very positive experience and I felt really reassured by this simple change to the consultation process!

Dr Jane Hibberd is a Lecturer in Occupational Therapy at the University of East Anglia.  Her primary research interests include practice education, students with additional learning needs in higher education and working with older people. More recently, Jane has started to explore the link between wellbeing and the medical humanities and how this can be embedded within the healthcare curriculum. 

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