Brain Waves: The online arts movement helping brain injury survivors to tell their stories through music
During the pandemic, we have adapted to new ways of working, socializing, learning and taking care of ourselves. For disabled people, being able to participate remotely has increased the accessibility of arts and culture. We are researching an online performing arts programme for people with brain injury, and asking if this has similar benefits to those experienced in a ‘real life’ group. If so, should the online arts movement become part of the ‘new normal’?
As an occupational therapist, I am already a believer in the importance of engaging in meaningful occupations, using arts and creativity for well-being and rehabilitation, and connecting with others in shared participation. My previous research has looked at other aspects of stroke rehabilitation (the process of regaining skills that may have been impaired after stroke), so I am enjoying the opportunity to learn more about the existing body of research and history of ideas relating to the value of the arts and culture.
Devoted readers of this blog may recall the launch of the world’s largest ever study into arts and health — a study called SHAPER. The programme is investigating the implementation and effectiveness of three health arts interventions in the areas of post-natal depression (depression after having a baby), Parkinson’s disease and stroke. This blog post launches Brain Waves, which will explore the translation of the stroke arts programme to the online world, and expand it to include anyone living with an acquired brain injury.
What are the issues faced by people with brain injuries, including stroke?
Acquired brain injury can have a number of causes, including meningitis (inflammation of the lining around your brain and spinal cord), tumour, traumatic head injury, lack of oxygen to the brain, and stroke.
Even when brain injury is clinically categorized as “mild,” individuals can go on to experience longer‐term cognitive, psychological, emotional and social effects, frequently resulting in ‘hidden disability’. Families often have to navigate a complex, changing situation that may include mood disturbances associated with their relative’s injury, shifts in family relationships and changes in financial resources.
We have all had a taster of social isolation as a result of the restrictions imposed to reduce the spread of Covid-19, but for millions of people living with the effects of brain injury, this experience is already their ‘new’ normal, as highlighted in Headway’s Life of Lockdown campaign.
In many cases, the hidden effects of a brain injury can be life-long, and those living with these challenges (as survivors or carers) often feel stranded with very little support once state-funded rehabilitation has ended.
What is Brain Waves?
Stroke Odysseys and SHAPER were all ticking along nicely until you-know-what came along (you know, the pandemic), and meeting in person was no longer a good plan. Many people with stroke and other brain injuries were directed to shield indoors, compounding the isolation they may already experience as a result of their difficulties with movement, communication or cognitive function. Stroke Odysseys moved to online delivery and this raised new research questions about how well a tried and tested programme such as this would work in a new remote format. Brain Waves was then born. Brain Waves is modelled on Stroke Odysseys, a performance arts intervention for people who have had a stroke, designed and delivered by Rosetta Life.
Rosetta Life describes itself as “a group of artists who work with those living with life-limiting illness to shape and share stories that matter through movement, song, image, film and writing. We aim to transform the stigma of illness and change the perception of disability.”
Funded by The Arts for Health Research Council (AHRC), Brain Waves aims to create a sense of community and enable self-expression in a shared virtual space. There is a whole team of people involved in managing different aspects of the project, including those with specific expertise in music and dance. Together we hope to increase the visibility of people with brain injury and amplify their stories and experiences.
Using the arts to improve physical and mental health and well-being is not new. Inspire the Mind has reported on the powerful potential of performing arts in previous blogs, in relation to mental health, dementia and self-expression. However, trying to translate these benefits to the virtual world is something that has been forced as a consequence of the need for social distancing.
Brain injury survivors will work with artists and musicians to tell their stories through music and movement, with a 12-week online programme of participatory performing arts workshops culminating in a final performance of a piece that has been constructed together. As far as we are aware this is the first study of its kind and will provide new knowledge in the field of arts for health and well-being, regarding the development of an online community of participants.
What are the questions we are trying to answer with the Brain Waves project?
We will explore what it feels like to be a participant, and any challenges the online format presents for participants as well as the artists delivering the workshops. There may be advantages to virtual participation, for example for those who would find travelling to and participating in a face-to-face workshop too difficult. We know that people who have participated in similar programmes in a shared physical space have benefitted from the social interaction, connection with others, and sense of building a community together. We are curious about whether it will be possible to enjoy these social elements when participants are meeting online. The project will involve designing an online training programme so that others can implement what we have learnt with new online groups, and we will be testing this later in the year in Donegal.
We expect that for some people, the online programme will enable new opportunities for participation, increasing access to culture, community and self-expression. For others, the technology may be a barrier or a poor substitute for physically meeting together in a real space. This project is exciting because it’s unpredictable — we just won’t know the answers until we’ve done it.
The new normal?
A positive consequence of the Covid lockdowns is that cultural activities and opportunities to connect with others have been made available for us to access from the comfort and safety of our own homes. Like many others, I have enjoyed zoom quizzes with friends as well as new experiences, all within reach of a computer keyboard. (A personal lockdown highlight was participating in a virtual biscuit icing workshop!)
As government restrictions lift, we must remember that there are many people who still will not be able to enjoy the freedoms available to the able-bodied majority. Many of us are now proficient at working, socialising and learning via video-link, and the opportunities we have harnessed offer life-changing possibilities for those who will continue to have difficulty accessing ‘real life’ alternatives beyond the pandemic. Accessibility should be seen as a right for all and not a privilege, and whilst work must continue on the accessibility of physical spaces, we should also capitalise on the gains we have made in enabling everyone equal access to culture and connection via the virtual world.
Do you have questions you would like to be addressed in future blogs on this project? If so, please let me know in the comments.
