Dr Catherine Baker, Birmingham City University

“The first piece [of artwork] was a way of healing, but the next was me now; it was me allowing everything to go into the past. I did this transition without even realising it, and I truly believe that this project allowed me to heal my thoughts and move on”.

This quote is taken from a description by one of the participants in an interdisciplinary research project led by Dr Catherine Baker, an artist and researcher based at Birmingham City University (BCU) and Mr Thanos Tsirikos, Consultant Spinal Surgeon at Edinburgh’s Royal Hospital for Children and Young People and SAUK Trustee.

The project, similarly named BackBone, sits at the exciting meeting point between art, health, society, and place. The opening quote describes the journey made over the course of two artistic workshops that took place in Edinburgh in 2022 that culminated in a public exhibition at the prestigious Edinburgh Printmakers. The project was primarily anchored in arts practice methods, but its interdisciplinarity aspect acted as the main theoretical framework for the conception, delivery, and review of this unique project which is situated in the growing area of interest of medical humanities.

The interdisciplinary team working on BackBone consisted of Dr Baker and Mr Tsirikos, Senior Developmental Psychologist, Dr Olga Fotakopoulou (BCU), Dr Nina Morris, Senior Lecturer at the School of Geoscience at the University of Edinburgh, and Dr Flora Parrott, Associate Lecturer at the University of Creative Arts.

A key motivation of the project was to use a range of methods, outside a medical setting, to open dialogue and create imagery exploring the gap between the patients’ own assessment of aesthetic deformity and the results of the radiological review.

Working with ten female participants, all previously patients of Mr Tsirikos, the workshops took place in The Botanics Cottage, set against the beautiful background of the Royal Botanic Gardens in Edinburgh. The art activities took inspiration from the gardens, using imagery of unusual growth patterns of trees, mostly sourced from the gardens as a starting point. The photographs documented trees that for unknown reasons had grown differently than anticipated, in many ways they aligned with the medical description of idiopathic scoliosis. The ten patients were operated at an average age of 14.6 years and all of them have over 2-year post-surgery follow-up with Mr Tsirikos at Edinburgh’s Royal Hospital.

The participants were all keen to take part in the project, and highly motivated to give back to the NHS and to contribute to research activities that might impact on the future scoliosis experience for others. The group had some nervousness around taking part in art activities probably because current school-age art education tends to reward the ability to copy things accurately. However, post school art education is far broader, exploring the value of art as a communicative tool that has the ability to capture that which might not be possible through words. The research itinerary included a series of focus groups for all the different participants. A sense of comradery emerged immediately for parents and participants who felt that there were people present who understood them and their scoliosis experience, which proved particularly freeing conversationally. In these sessions the young people described similar responses to their surgery ‘not even crying’, not wanting to feel sorry for themselves, feeling that the other younger children who were more visibly ill than them in the hospital were much worse off. On returning home, they described the difficulty a long recovery and the ‘dehumanising’ feeling of needing to be helped with simple tasks such as showering and getting dressed. The group also had a similar perception of their body and of their new image and struggled with seeing themselves. The patients talked about the importance of the support of their families but also of the impact of the diagnosis, surgery, and pain management on relationships within the family. It is understood that supressed emotions and signs of poor mental health are often detected in the clinic environment.

As part of the process of gathering objective data during the workshops, the team used the participants SRS-22r quality of life assessment, these questionnaires are used as a standard part of the patients’ treatment in clinics. In addition, the group was asked to fill in a TAPS (Trunk Appearance Perception Scale) before and after the workshops. The group demonstrated a high score in the Trunk Appearance Perception Scale form (TAPS) indicating smaller perception of having a curved spine and a positive affect and satisfaction with their body image.

Over the two weekends, there were garden walks and art workshops and short talks, through which participants with AIS and their families were able to express themselves and share their experiences. The mixed methods data collected was rich and extensive and at the end of the final art workshop, there was a large discussion group to think through the art works produced and the experience of exploration through artistic techniques.

Art practice proved an effective way of thinking through and with scoliosis, facilitating an exploration of the experience of scoliosis from diagnosis to present day. It became clear that making the artworks enabled the participants to reveal long-held anxieties and to articulate their thoughts in more depth through image making.

The aesthetics of imperfection was explored through material processes that focused on the body as both an object and how it is experienced using the metaphor of tree images. What emerged throughout, despite the small group size, was that dissatisfaction with body image was less present than current research indicates; however, what proved dominant was the need to express the experience of spinal surgery and the significant impact it had on the lives of the young people present and those they share their lives with.

The project enabled a ‘shifted’ body discussion to take place through the use of metaphor and how one might articulate the experience of scoliosis to others through art. Only a small number of the group took part in the workshop because of an interest in art and as a result there was some apprehension around the artistic processes at the start of the workshops. One of the participants described the initial reservations around art making:

“The art and workshop [were] the thing I was most worried about as I’m not a very confident artistic person, but I really enjoyed it and how free it was. It has 100% changed my perspective on art and the creation of it.”

As a way of opening up new artistic processes, Catherine Baker demonstrated a range of cutting and collaging techniques that the group could use and interpret as a way-in to finding their own artistic language.

Confidence soon grew within the group and the art outcomes became more sophisticated in their communicative potential and it was wonderful to see the participants discussing their artistic choices with each other throughout the workshops.

The team noted that through the questioning nature of contemporary art practice, artworks can become more complex and unfamiliar, but this is actually part of a sophisticated development in the art making process. The language of making overtakes one’s ability to explain the material and metaphorical relationships taking place in the image, in words. Art proved an effective way to explore the gap between experience and language, enabling an emotional, psychological, or socially motivated outward expression through which participants could affirm their identity. Perhaps this speaks to a desire to reflect the complex, negative, and painful experience of scoliosis as much as to communicate moving on, repair, and positivity.

“This project allowed for a safe space of complete understanding, allowing me and those around me to open up and fully allow ourselves to have the closure we needed. I for one did not realise how much I needed this experience to put the past behind me and hold onto the positives”
The group expressed a sense that, eventually, they became proud of the ‘battle scars’, the marks on their bodies. Despite stories of being bullied at school, loss of friendship groups, even friendship betrayal emerging as a theme, there was a huge sense of pride in their bodies, what they’ve been through, their individuality, their uniquely marked skins, their scars making them part of a minority collective.
Throughout the activities, there was a strong sense of the shared learning and openness to new ways of thinking that can take place in a successful interdisciplinary project. This was particularly strongly felt in the end discussion in which a group of the AIS participants and one of the siblings shared their responses to one another’s artworks and used the images as a way to discuss their experiences.

The artworks produced during the course of the workshop were displayed and celebrated in an exhibited at the prestigious gallery at the Edinburgh Printmakers alongside an exhibition of work by Dr Catherine Baker titled ‘Held’ in September, 2022.

“All I have wanted since this surgery is to help spread awareness and develop a better understanding and overview of what I and the others went through. So, you’re definitely going to be stuck with me now!”

We felt it was particularly important for the participants voices to be reflected in the analysis and review process that happens at the end of a research project so three of the workshop participants, Melissa McDermott, aged 18, Holly Smith (22), and Jamielee Stevenson (24), joined the team in London for a 2-day review session, to represent all the participants who took part in BackBone. Melissa, Holly, and Jamielee wish to act as mentors and contributors in the next phases of the research and are interested in developing a programme of creative scoliosis podcasts. The project has enabled them to be important spokespeople for AIS, indeed many of their fellow BackBone companions are also keen to be involved in future activities. Dr Baker is in the process of developing a larger co-funded application with Kew Gardens in London, who are eager to join the research team to co-design the next version of BackBone to expand the scope of the project in the future. It is intended that these future plans will lead to the recruitment of a much larger number of scoliosis participants from across the UK.