The word ‘pain’ appears multiple times in Khairani Barokka’s 2017 reflections on the tour of her spoken word/performance art show Eve and Mary Are Having Coffee in 2014. The word has a recurrent and persistent presence that tells the reader that for Barokka, pain is pervasive and ever-present. She uses academic Yasmin Gunaratnam’s term “total pain” to describe the invisibility of pain and the social conditions that heighten the complexities of living with chronic long-term illness that is largely unseen by others. As she writes: pain hides in plain sight. This raises the question of how I extend not only my awareness of the stories of students and staff with long-term hidden illnesses and disabilities but employ a meaningful sense of empathy and mindfulness.
Barokka describes the lack of pain management available in her native Indonesia and the intersectional discrimination (disability, ethnicity, gender) she had faced in other countries where she had lived that had limited her access to care. The relationship between health care and ethnicity has been brutally highlighted by the Covid pandemic. The Office for National Statistics (ONS) reported in October 2020 that, for example, men with black African heritage in England and Wales, were more than two and a half times more likely to die of a Covid related death than white males, whilst Black Caribbean females were nearly twice as likely to die of Covid than white females (as reported in the Guardian 16.10.20). The relationship between racial discrimination and health was studied in a recent report: Racial discrimination and health: a prospective study of ethnic minorities in the United Kingdom (2020) by Ruth A. Hackett , Amy Ronaldson, Kamaldeep Bhui, Andrew Steptoe and Sarah E. Jackson, which concluded that BAME adults who perceive racial discrimination experience poorer mental and physical health than those who do not.
Barokka’s ability to tell her story with such honesty and self-reflection seems important to eliciting understanding and empathy in others. The notion of ‘narrative medicine’ was central to the research and practice of Caroline Ingham, who studied on the MA Fine Art Painting course at Camberwell in 2019/20, and who has had her own experiences of serious, long-term illness. Narrative medicine suggests that the personal stories of a patient’s experience of ill health should be considered alongside physical illness, as a way of promoting healing, and empathy in health care professionals. Through the writing of Audre Lorde and the artworks of Jo Spence, Hannah Wilke and Helen Chadwick, Caroline argues that personal storytelling through writing and visual art can give agency to the individuals concerned and their audiences, and in these particular examples, give agency and visibility to women with a range of positionalities who are speaking from positions of vulnerability and precarity.
Storytelling through art making can be a way of bringing the narratives of those with unseen disabilities into clear view. Anne-Marie Creamer, artist and Pathway Leader for the Art Program Diploma in Professional Studies for the BA Fine Art course at Central Saint Martins presented a paper at CSM’s ‘On Vulnerability and Resistance’ symposium in 2019, that discussed her own experiences of living with a rare spinal tumour. She wondered what was at stake when speaking so publicly with colleagues and students about and in vulnerability but argued that vulnerability can be central to learning and agency, that within the modern university, vulnerability and dependence (can be) regarded as central to human experience and to the processes of learning.
The coronavirus pandemic has had a detrimental effect on the mental health of many of our students (surely this is one of the most common hidden disabilities). Feelings of isolation, anxiety and uncertainty encouraged some to tell their stories through their practice. But others have found it impossible to speak about their experiences, silenced by a sense of claustrophobia and a fear of burdening others. During the past year, I have become more aware of the intersectional conditions that exacerbate poor mental health such as racism and poverty created by class. I have had conversations with students who have struggled to pay the rent and the fees, to buy the laptop and maintain good WIFI connection, who are living and working in challenging home environments or who are caring for others. Sharing stories can at the very least help staff to understand the support that might be needed, but it might also help us to recognise and empathise with each other’s positionalities and make the stories of those with hidden disabilities as visible as any other lived experience.