Anne relives a place of safe serenity, before her stroke.
Anne relives a place of safe serenity, before her stroke.
Lill Sullivan dreams she is able-bodied.
Performing your story to an audience can help recovery from stroke.
Stroke Odysseys helps with living life after stroke.
Becoming a creative part of South London’s Stroke Community.
We chose to focus on working through improvisation. Improvisation encourages people to develop confidence through spontaneity. While working on the hospital wards of the National Hospital for Neurology and Neurosurgery in Queens Square, I had found that people can often surprise themselves and this counteracts the ‘learned helplessness’ of being a so-called ‘stroke victim/sufferer.’
Improvisation and contact improvisation in particular is a useful technique. Its emphasis on flow and fluidity focus on processes that are becoming and emergent . No position is held long enough at any point to become fixed as a represented image of an able or disabled body. This enables the disabled body to challenge any fixed representation.
This debate over whether to perform a disability or to forge an aesthetic that elided between ability and disability became the central inquiry of our workshops. What is an aesthetics of disabled movement? Is an aesthetics of clumsiness a useful inquiry? How do we pursue an aesthetics that is not premised on the original or natural disability? This question is particularly pertinent in the context of neuro rehabilitation where a body is newly disabled. As one particularly articulate participant commented, “ I dream able bodied” For many participants who have recently suffered a stroke, the disabilities are newly acquired and there is a genuine oscillation between the disabled body and the able bodied experiences of a life experienced prior to a stroke.
We tried to focus on movement practices that concentrated our attention in the present, on ‘who I am’ and the process of regaining a sense of self – not by getting back to ‘who I was’ but celebrating and embracing the new person. We started each session by working with the breath. This enabled the group to centre themselves in the rhythm of breath. We also used the breath as a way of visualizing and imagining the body relaxing and softening; with each exhalation participants were invited visualize the breath filling the space between the joints, imagining the breath pouring into the spaces to soften, open and relax the joints and open the readiness of the body for movement. We then worked with touch to connect ourselves with the body, working with a variety of self touch and replicable touch, massage and anatomical awareness.
We focused on the sensory memories of our physicality in order to ensure that an embodied self was emerging in performance. One week I invited participants to visualize themselves in a place. One participant recalled the relaxed serenity in the surf of a Seychelles beach. This clear ‘able bodied’ memory we wanted to bring to performance in a way that did not foreground the clumsiness of disabled movement but emphasized the ablebodied self.
I invited the participant, Mrs A, to react through abstract sound to the feelings inside her body. She directed my hand to different parts of her body and then sung the sound appropriate to a memory. From her heart came a sonorous soprano voice, from her ears a softening whisper. “Heart opening, listening to the family’s voices whispering in the waves” She declared. The waves, the heart opening, the whispering of family chatter became the soundscape we created for her as she stood in the centre of a tight circle.
We discussed what the main feelings might be for this memory. Mrs A’s was a pervasive sense of relaxation, floating care free in the waves, not having to worry about her grandchildren who were being looked after nearby. This weightless sensation of wellbeing was in stark contrast to the stresses and anxieties of the post stroke life she now led. It was a place she wanted to return to. Other members of the group were familiar with this feeling.
The following week the workshops were run by Liz Mansfield and Chris Rawlence who wrote of his experience of the workshops:
“While we were having tea and cake, another member described the stress free time she experienced, without a care or worry in the world, in the time immediately after her stroke. She was aware of her family tense and panicking all around but felt protected in this bubble of calm. Another participant echoed this experience in her memory of an immediate post stroke time of teaming thoughts |(without words!) – [ A workshop leader recalled, “As she described it, it felt like a padded nest-like a place of white soothing light somehow to me”. Another member then described how, in relearning her stroke-damaged faculties, she seemed to relive a child’s development from infancy – through motor milestones and the acquisition of language. I was reminded of Belfast Stroke Consultant Enda Kerr’s recent description to me of the capacity of our brains immediately post stroke for a form of ‘neuro-plasticity’ – meaning that in our desire to recover from the effects of stroke, nature had endowed us with the ability to open up and explore neural pathways which had laid unused and unexplored for most of our lives – he emphasized that this did not involve the forming of new neuronal pathways but (crucially) the ‘waking up’ and exploration of long neglected pathways that still existed. Enda was keen to explore the artistic implications of this theory which he termed ‘creative neuro-plasticity’ – in other words the healing, restoring and recuperative power of art on the challenging journey of stroke recovery. Within the context of performance arts in health, the able bodied memories, the neural plasiticity of recovery, the emergent disabled self seem in constant dialogue. This is a particularly fertile ground to nurture a new language for disability dance performance, a language that is not defined by opposition to ability or the absence of ability but by constant negotation between the two.”
The schism between ability and disability maybe particularly pronounced in stroke survivorship but has also been noted in disability performance discourse. Ato Quayson argues that this schism between the disabled and able bodied is partly the result of the lack of separation between medical and social representation of disability, produced by the “interaction of impairment and a spectrum of social discourses on normality that serve to stipulate what counts as disability in the first place”. Citing Mitchell and Snyder he notes “the degree to which Brueghel’s paintings succeeded in disrupting and variegating the visual encounter between bodies in painting. Clearly disruption and variegation are also are also features of real-world encounters between the nondisabled and persons with disability.”
We were five artists working together: Orlando Gough, the composer, Melanie Pappenheim, composer and vocal artist, Moreno Salinas, choreographer, Liz Mansfield, singer and actress, Chris Rawlence, filmmaker and librettist and myself, the lead participatory artist for the project.
Mid way through the process, we offered participants the opportunity to perform their stories and to share their physical responses to stories to a wider audience. All members of the group agreed that they would like to take this step. We then sat round in a circle and talked about where we were with the series of movement workshops and how to expand them. We talked about the decision to work towards performance what this decision might mean and how it might be different from the process of workshops. There would necessarily be a closing of the open processes of workshops in order to rehearse and shape fragments. Unanimously everyone declared that they would like to make performances
We talked about the material we have to date and asked people if there was anything missing and all unanimously came to the same gaps which were about the importance of the group itself and of community. This importance of community is also the formation of a performance company that cares for and values each member as an intrinsic member of the whole. We returned to this importance of community again and again. This is also echoed in disability performance studies and Back to Back Theatre in Australia are renowned for long processes that enable a company of actors living with learning disabilities to take clear ownership of script and processes. This co creation process is at the heart of participatory arts and also at the heart of new thinking about rehabilitation and health.
The following week the choreographer arrived to see the processes and to help shape the emergent ideas for the stage. The idea that were emerging through participatory and co created processes were now being offered an outside eye to work out what place they might find on a public stage.
One of the choreographer’s responses provoked long and engaging discussions. During the workshop a participant, Mrs F, had spoken about the arabesques she used to perform as a child. She wanted to repeat the image she had in her memory, the resonance of the image in the present was a flatfooted pirouette that carried the grace of her memory and in the shivering between memory and the present lay a .
When I mentioned that I found this beautiful, it provoked Mrs F’s anger. She said that there was nothing beautiful about the frustration of living life after stroke, of living with a disability, of the daily frustration of searching for words that eluded her and of not being understood.
The choreographer commented:
“I found fascinating Mrs F’s frustration and rejection of the idea of ‘beautiful’. I think we should take her feelings on board and think about what we create in a ‘matter of fact’ way. The group we are working with has the potential to evoke both beauty and sadness/frustration in the viewers, and it seems important to me that from the inside we let materials be what they are, and don’t force on them neither a quality of beauty nor of sadness.”
Her image of a ballerina provoked a witty response from another participant who commented that they could not be ballerinas but “Ballet Rhinos”. The choreographer commented:
“I love the concept of ‘the aesthetics of clumsiness” … and requested that we “give a go to creating a very short group choreography to explore this with them? They would be all sitting in a neat line and the choreography would be made of very simple movements, perhaps even on a beat (moving the head, moving one foot, clicking fingers, etc.). We could start with movements that all of them can do; perhaps later the choreography would reveal the physical limitations of different people. Either way, it would be important for me that this line choreography has a light-heartedness and ‘joie de vivre’ “
When the group of artists discussed this task we were concerned about participants being asked to reveal or expose their disabilities. We were sure that a participatory process was not an appropriate one to ask people to perform their disability.
The objective of our performance practice is to reduce anxiety and depression and provoke optimism and hope for members of the stroke community. A practice that exposed disability gave us concern and yet we found ourselves confident that a practice that exposed the struggle or the sliding scale between disability and ability would enable the performance of an embodied awareness of the potential of a future life.
So we talked about the challenges people face and try to overcome. We began with a phrase of Mrs A’s that summarised her time when she was discharged from hospital:
“Thank you. Well done. Good bye”
The emphasis was on the finality of good bye. At the end of a period of rehabilitation people felt that they were waved goodbye to and then left without any support to face a life with disability. We found a gesture for each frustration people face in their daily lives, added phrases that articulated the gestures and and built a sound scape with gesture and phrase
‘I must have broken 50 mugs’
Boiling hot water on my trousers
I pick up the kettle but forget I am holding it
It is a stitch dropped
We Try to retrieve
It is all me here here
But I can’t
The gestures were theatrical and pointed to something: an object that cannot be named, a brain that is no longer functioning, the frustration of not being able to communicate, the dropped mug, hot water spilt, a fear of speaking unable to speak, unable to breathe, a guitar that can no longer be played. I was concerned that this gestural pointing is a thought movement, a movement that illustrates an idea. It is not necessarily sensed from within. However, this in itself implies an authentic or apriori truth of the body that this practice was set to disrupt. We therefore allowed the improvisation of gestural indicators that sometimes illustrated the emotion and sometimes seemed to contradict the expression.
A single phrase encapsulated this schism between ability and disability when one participant said, “I dream able bodied”. A few weeks later she arrived with a fully composed song:
Now there’s metal in my leg
It’s sore and it’s throbbing
And my bones are aching constantly
I don’t even say it
It’s just noise
There’s a pharmacy in my system
It helps and it hinders
There’s a jungle in my head
It’s dark and it’s cold and it’s scary
And it’s raining tears of anguish and strife
And I can’t cope
I can’t cope
Sometimes I just can’t cope
In the distance I can see the mountain erupting with blood
It doesn’t matter
I survived I’m still breathing
I can hear you
I can hear you
Don’t say those crazy things
I can hear you
I know I can’t talk
But I can hear you
That’s why I dream able bodied
I dream able bodied
I can walk and I can sing dance and I can flirt
I can do all the things that I did before
Because I dream able bodied
I dream able bodied
Damaged people are dangerous
They know they can survive
Another participant had a complex relationship to a similar story. He used to be a pilot and carried photos of himself as a pilot and copies of his flight book with him at all times. However, he was now living with aphasia and was unlikely to fly a plane again. Every week the frustration from his inability to communicate seemed to take him to the brink of non participation in any further workshops. “I can’t” was his response to all tasks and activities. When we engaged with simple contact improvisation tasks, it was clear that he had clear command of all his physicality and he experienced no trace of any physical disability. Working with the weight of two dancers’ bodies, the dancers simulated the experience of flying for Tony. “Up, up, up, beautiful beautiful here” he said and then dismissed the process as useless. “No no no’ “I can’t”. However, there was a pride in working with the dancers and in his growing physical confidence. He navigated within himself the possibility of mastering new experiences, developing new skills with a sense of his own linguistic clumsiness and his own disability. This tension will become the tension at the heart of his performance.
This complex negotiation of disruption and acceptance is most apparent when working with people living with the effects of a stroke. In this context, the choreographer’s aim to find a process where this disruption could be foregrounded was aesthetically justified. However, while working with vulnerable individuals we needed to find an ethical way to enable participants to own the processes and to take ownership of the stage. We therefore made the decision to hold the performance in an open circle. There was no stage and no audience. Any audience member would be unable to tell who was ‘contracted’ to perform and who was not, would be unable to tell who was able bodied and who was disabled.
In one part of the performance, two ladies invited every member of the circle to join a conga. One conga travelled anti clockwise and the second travelled clockwise. An African folk dance was adapted so that all participants followed a disabled interpretation of the dance. The left leg dragged slightly and the right leg led the dance. This was not apparent to anyone in the audience. There was a slight bodily awkwardness in the gestures of the right leaning dance but this experienced awkwardess did not translate into a visual disturbance. In my personal experience, the embodied experience of right dominant physicality was experienced as an awkwardness or an anxiety but not perceived as a visual impairment.
Relocating the disruption within the bodies of the audience seems a possible way forward that will enable us to reframe the opposition of ballet rhino and ballerina into a new aesthetics of clumsiness.
The importance of the performance company is central in the risk taking curiosity that is offered to participants and in the new creative skills that are developed by participants. However, this can lead to a surfeit of empathy and care within the care. After the performance the choreographer commentated: “A warning for me though is that many people described it as ‘lovely’, which I find a tricky word. My ambition would be that people describe the work as……..life-changing, life-affirming, mind-blowing, devastating, something along those lines 🙂 I would love if the work would affect the viewers deeply.
From the sharing it was apparent how beneficial this process has been for the participants, both in the phase of the workshops and in moment of performing it. I do think that there is value in simply witnessing this as an audience member, as it can still trigger many reflections. Ideally though the audience members will leave the room as transformed as the participants, and it would be great to reflect on how to achieve that.”
The navigation of joy and pain, the disruption of disability and the processes that made this possible were all delivered successfully. Our challenge over the next six months is to create a performance company that is built on principles of co creation, that offers a rehabilitative journey to participants and an embodied understanding to audience members but also offers a transformative, provocative, and life changing experience to all engaged with the performance and its processes. Our challenge over the next three years is to find out whether this particular performance practice is particular to neuro rehabilitation and how we might translate it wider within the field of disability and health.