Power, Passion and a Transformed View of Illness and Disability

As a part of the new exhibition Opera: Passion, Power and Politics, organised in partnership with the Royal Opera House, the Victoria and Albert Museum last October hosted Hospital Passion Play, a live choral performance led by founder and artistic director of Rosetta Life, Lucinda Jarrett. As a charity, Rosetta Life is devoted to changing the perception of those who live with life-limiting illnesses, involving them directly in cultural initiatives and performance-based programs.

'Rosetta Life was set up to challenge the stigma of illness and perception of disability by enabling people to tell and perform their own stories,' explains Jarrett. 'We began 20 years ago by enabling those facing life-threatening illness in hospices to tell their own stories and, with a grant from Big Lottery of £2m, we were able to pioneer the introduction of digital storytelling in hospices and create a network of 40 hospices sharing stories online. Since 2010, we have focused on neuro-rehabilitation and in 2014 we secured a three-year practice research grant to develop movement, song-making and voice practice in clinical and community settings.'

Hospital Passion Play is one of the outcomes of Stroke Odysseys, a long-standing creative project addressed to those living with stroke, their carers, researchers, clinicians, dancers and lyricists. 'The premise of Stroke Odysseys is that participation in the creative workshop cycles leads to informal performances, allowing patients to make remarkable progress in the long process of rehabilitating, speech, movement, and regaining confidence and a sense of self and agency in the world,' reveals Jarrett. 'The suggestion and hope are that some kind of neurological repairing – rewiring – has taken place as a consequence of creative self-exploration and expression – referred to as ‘performing yourself’. Research has confirmed, in fact, how people who have lost the ability to communicate, due to severe brain damage, can regain it by singing the words. According to these findings, the melody can help the brain rewire itself so to bypass its damaged regions and restore communication.

Composed by Orlando Gough and directed by Karen Gillingham of Garsington Opera, this arts and health collaboration between creatives, medical professionals, vocal groups and patients gathered on stage three different ensembles, for a total of over 80 performers. The London Stroke Choir welcomes stroke survivors from anywhere in London and is promoted by the Lambeth and Southwark Stroke Network. The Shout at Cancer Choir is a charitable organisation dedicated to helping people improve their voice, re-gain confidence, and re-integrate into their community after laryngectomy. Whereas, the Garsington Adult Community Chorus strives to encourage a stronger connection within communities and, as such, has also established a partnership with The National Spinal Injuries Centre.

The concept was born from Jarrett's direct observation of unusual performing spaces as a prolific ground for artistic growth. 'I am intrigued by the potential of performances taking place outside theatres, where the venue itself is an inspiration to people. Often people get isolated by illness and, when taken to museums, they are open to inspiration and narratives outside their own. We therefore chose to engage with the V&A and their exhibition Opera: Passion, Power and Politics. A performance in this context also enabled us to bridge the worlds of the hospital and the museum, and create a radically new form of opera, while also bringing completely new audiences to the museum,' continued the artistic director.

'We are currently introducing our model of Stroke Odysseys into the wards of the hospitals and needed to find a way to enable people to engage in the process of making movement, songs and performance. That's why we conceived the idea of running workshops that would create songs curated as a libretto, before being taken into the community to be rehearsed.  In addition, we produced fragments of performance on film that could be inserted into a live performance in the museum and explore a way of taking intimate performance from the hospital ward to the national museum.'

No words could offer a faithful portrayal of their visceral and resounding energy

Highlighting once again Rosetta Life's commitment towards the inclusion of patients with long-term illnesses and, in particular, those who are unable to leave their hospital wards, the event was broadcast live on Facebook. This essential level of empathy is often forgotten in the fast-paced routine of modern life, where members of society fail to understand the physical and psychological implications of long-term illness.

'I think people are increasingly insular and driven by the pressures of earning a living and survival. This means that the slowing down needed to understand or communicate with someone who has a speech, cognitive or physical disability becomes an irritation. As a consequence, people living with newly acquired disabilities feel invisible, marginalised and silenced,' points out Jarrett. 'Patients say to me that they need people to slow down to listen to them, to take the time to communicate, not to be too hasty or to interrupt by supplying the word that might fit, not to hurry on, speak over and/or pass by completely.'

After two years in the making, bringing Hospital Passion Play to life involved treating sensitive topics and responding to the unique background of each performer, together with facing some technical challenges. 'The coordination of the arrival on stage of eighty performers, all coming from different parts of England, and ensuring that, with very limited budgets, they could deliver a performance – even though they only had one day together to rehearse' were amongst the greatest hurdles, together with providing sufficient microphone access and precise cuing of choirs to films.

As for the aims of this ambitious project, Jarrett describes the intention 'to create for participants a genuine and healing sense of community and agency, through combined choirs and digital connection with hospital wards. To give the audience a profound sense of community and a transformed view of illness and disability, through art.' Within this prospect, she also has a few initiatives lined up for the future. 'The project is ongoing and culminates with a conference and series of performances at The Cultural Institute at Kings College London in May 2018,' she reveals. 'We are planning to restage the performance of Hospital Passion Play twice next year, in Bristol and in Buckinghamshire.'

Telling three different stories, Hospital Passion Play intertwines live performance and video projections, with the protagonists alternately sharing some of the most personal chapters of their recovery process. Keywords and medical terms are often repeated to exhaustion, as to recreate the obsessive and invasive nature of their illnesses, but the finale carries a strong message of hope, which invites everyone to never give up.

As one of the audience at the Lydia and Manfred Gorvey Lecture Theatre, I was deeply touched by the emotional impact of this unprecedented work. Not only because of the important number of artists on stage, but mainly for their willingness to share with dedication and enthusiasm personal experiences and intimate challenges. No words could offer a faithful portrayal of their visceral and resounding energy, whilst recounting with live music and movement their journey through hospital wards and countless care centres.  

Such an inspiring and life-changing initiative deserves to reach the widest possible audience but, realistically, can only do so with a generous – as much as necessary – financial support.​

 Marianna Meloni

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