Defining the project
Persistent pain is a huge worldwide health challenge. It is the primary
reason people in the UK see their GP. One of the biggest frustrations reported by pain livers is
its invisibility. They want to tell their stories, but they are
often faced with limited time of healthcare professionals
and lack of understanding. They do not always have
the vocabulary to express their stories. Unmasking Pain
was initiated by BSDC, following conversations with
Dr Frances Cole, a retired GP and renowned pioneer
in the field of pain management, the founder of Live
Well With Pain (LWWP). Balbir Singh, director of BSDC,
then conceived Unmasking Pain to explore creative
approaches to tell stories of life with persistent pain.
Collaborators from the clinical and arts world came
together to understand what difference might occur to
people and their health when engaged in a more socio-artistic
creative approach. What transpired was a new
partnership between BSDC, Leeds Beckett University
and Durham University, LWWP and Space2. Additional
expertise was brought by Dr Cole and Rosie Cruikshank,
a pain physiotherapist at St Thomas’ Hospital, London.
All partners shared a commitment to understanding
the impact of non-clinical interventions in pain
management practice and challenging the established
biopsychosocial model. The project’s experimentation
was supported by a range of creative arts within
different supportive and stimulating contexts. The team
evaluated outcomes both quantitatively and qualitatively.
Project Partners:
Balbir Singh Dance Company
Durham University’s Wolfson Research Institute for Health and Wellbeing and Pain Academy (WRIHW)
Live Well With Pain (LWWP)
Leeds Beckett University Centre for Pain Research
Space2
Contributors in Brief:
Balbir Singh // Dr. Frances Cole // Prof. Paul Chazot // Prof. Mark Johnson
Rosie Cruickshank // Emma Tregidden // Dawn Fuller // Louise Trewern
Chris Speye // Adam Strickson // Anamaria Willis // Lottie Keyse
Key aims
- Co-create new vocabularies and ways of expressing pain
- Enable pain livers to unlock their creative potential and gain a sense of autonomy over their own stories where pain is not a defining feature them
- Support in-depth research that places equal value on clinicians and lived experience contributions
- Stimulate conversations and practice to transform pain self-management long term
- Explore evaluation including testing new technology that enables quantifiable measuring of the impact of arts participation of individuals taking part
Our approach
The project tackled diverse ways to explore pain with
a non-judgemental and curious approach to engage
those with pain in a rich mixture of creative arts. Balbir
Singh believes that the arts are about story, emotion
and expression - abstract, literal and places in-between.
Dance is technical and expressional, movement
is instinctive and purposeful, music stimulates the imagination.
BSDC’s outlook is global, creating work that celebrates the human condition and makes
sense of who we are, our relationship with our bodies,
minds and the world around us. Balbir facilitated a team of experienced, multidisciplinary artists including South Asian and Western
contemporary dancers, musicians, visual artists, film
makers, photographers and writers. The creative team
met at the outset to explore themes and approaches
and to embed a co-creative framework for Unmasking
Pain. The sessions took place around the country with activity in Durham, Leeds, Huddersfield, Devon and London.
The lynchpin
Dancer and movement artist Kali Chandrasegaram has had chronic back pain since 2002. In exploratory sessions with BSDC, Kali was interviewed and able to respond with words, movement and rhythm to express his understanding of his long-term pain. Over time, this iterative process allowed the team to pinpoint the most effective
questions and format, enabling the artist to explore pain through shape, music/sound, rhythm, colour, and its journey
through the body.
These sessions provided a safe space for vulnerability, anger or frustration, always concluding in
a positive emotional state: ‘a good place’. With this extensive preparation, Kali became the lynchpin of the project,
contributing significantly to its success.
When the different groups came together to participate in the CoLabs, these often started with a performance
shared by Kali using dance, movement, shapes, music and props to express his own pain. This reduced pressure on
participants to contribute immediately and established a shared lived experience between artists and participants,
an essential pre-requisite to the co-produced approach of the workshops, bringing parity of status to everyone in
the space.
Bridging the gap
Balbir viewed the process of Unmasking Pain as a
triangular relationship consisting of:
-
His creative process, involving in-depth research,
conceptual thinking, improvisation, building a team
of intercultural artists willing to be taken out of their
comfort zones by a strong vision, to become the
bridge in realising the concept.
-
Strategic thinking and partnership building, with a
shared sense of ownership.
-
Building trust with the participants involved as
audience, collaborators and eventually opening up
to being artists in their own right.
At the heart of classical Indian dance and music is
improvisation. That’s not to say “making it up as you
go along”, rather it means to work organically in a
responsive way – to think quickly, intuitively, sense the
energy of the space and enable the process to shift
and grow safely in the moment. Thus, much of what
was planned ahead would change during the CoLabs
in response to the people in the room and how the
process was unfolding.
Building trust with participants was in part made
possible by the artists selected for the project, most of
whom were deeply experienced in Balbir’s collaborative
and improvisatory practice. They brought their different personalities, life experiences and sensitivities to the
work, connecting with participants and audiences in
different ways. Ultimately, the aim was to dissolve the
distance between artist and participant, reaching a point
where the participants become artists and co-create
the sessions.
Distraction
An overarching theme of the process was the one
of distraction. Engaging in various creative activities
served as a purposeful distraction for participants,
which allowed them to shift their focus away from pain
and immerse themselves in the present. A simple greeting at the
car park and a welcoming bouquet of colourful flowers
before the sessions began would, for instance, set the
tone for the day.
The cultural aspect: 6 Million+
A key aspect of the project was the multicultural
landscape in which artists, partners and participants
from all cultural backgrounds could create safely. To
reinforce this idea, Balbir Singh partnered with Adam
Strickson, teacher of intercultural performance at the
University of Leeds, and lead artist at the the 6 Million+
Charitable Trust in Kirklees, West Yorkshire.
The Trust works with an extended family of refugees
and local communities, expressing stories of the
Holocaust, genocides and contemporary persecution.
Adam Strickson introduced Syrian and Kurdish refugee
participants to the project. They have experienced
injury in war and suffer from conditions like chronic arthritis and
heart disease, the management of which has been hampered
by the trauma of being displaced.
This added a new
emotional dimension to Unmasking Pain. A significant
number of artists and regular volunteers at the Trust also have long-term physical pain but
never address the problem. Working as part of Unmasking Pain allowed them to address these
issues, and create conditions for everyone to be involved on an equal, collaborative basis.
Unmasking Pain brought the refugees, artists and volunteers to a deeper dialogue than is
usually possible within the 6 Million+ programme. Activities included watching Kali explore his
pain in dance, creative writing in Arabic and English, working with clay, pastel drawing, group
dancing and composing individual music pieces for participants. Everyone participated on an
equal basis. Deepening friendships and sharing food were also important at each session.
A fruitful online exchange of cultures between the white North East group and the 6 Million+ participants enabled new pathways of vocabulary to express pain holistically.
“
We like to think of ourselves as an extended family, and the artists and co-ordinators from
Balbir Singh Dance Company easily and happily fitted into this.
”
Adam Strickson
Language in the Landscape
The concept of Language in the Landscape seeks to awaken our senses creatively, both in the
external environment and within ourselves. Originating from collaboration with the Huddersfield
group of the Unmasking Pain project, Balbir Singh encouraged participants to observe shapes
of trees and branches, searching for letters of the alphabet. This exercise aimed to stimulate
the creative senses of participants both in Huddersfield and at the Durham Botanical Garden, urging them to perceive the world through a fresh lens.
This approach reflects a fundamental curiosity
about the human experience, inviting individuals to explore and engage with their surroundings
in innovative ways.
Metaphors
Whilst
current practice uses techniques such as a scale of one to ten to
ask patients to assess their pain, the creative approach was enabling
participants to express their pain better through metaphor including
movement, colours, music, shapes and other art-forms. Each session had a different creative focus, but were linked through growing creative confidence,
creativity and aesthetic awareness.
Musical Treatments
Live music is a core ingredient of
BSDC’s work and Balbir was keen
to test the idea of non-medical
treatments. Using tabla, a traditional
North Indian percussion instrument,
the team introduced the concept
of rhythmic patterns, and cyclical
motions. Participants linked these
patterns to rhythms of the day,
week, month, year and transposed
these creative elements into other
themes. Musical profiles for each
person were built up including
favourite music and moods or
favourite places to listen to music.
Balbir then collaborated with
musicians Aniruddha Mukherjee
and Joe Harris to create what he
called Musical Treatments. Through
converting each participant’s
name into a rhythmic pattern, the
artists worked up personalised
compositions, blending Indian
classical music and western guitar
harmony. The whole process for
the 12 Musical Treatments (one for
each participant to take home) was
recorded and filmed.
Outcomes
An interdisciplinary team of pain researchers, clinicians
and non-clinician recorded with the artistic team the
emerging multidimensional experience as well as the
biopsychosocial change. It was drawn from three
universities:
Leeds Beckett University, University of
Leeds and Durham University.
10 key outcomes were identified and evidenced:
1.
Unmasking Pain encouraged participants to engage
in creative activities
2. Participants felt more confident in managing pain
without medication
3. Participants' perceptions of creativity underwent
significant transformation
4. Reliance on pain medication decreased
5. Receptiveness to alternative creative ways to pain
self-management increased
6. Participants’ Confidence Scores increased
7. Participants’ Pain Catastrophising Scores (PCS)
decreased
8. Wellbeing index increased
9. Emotional Arousal Responses increased
10. Walking activity, general health and sleep quality
increased; all physiological benefits of Unmasking Pain
were maintained after completion for at least 3 months
Fuse Award
In February 2023, BSDC won
the Fuse Award for Innovative
and Creative Communications
in partnership with Professor
Paul Chazot and the
WRIHW. Fuse, the Centre
for Translational Research in
Public Health, is a partnership
of public health researchers
across the five universities
in North East England. The
Centre works with policy
makers, practice partners, the voluntary & community
sector, and the public to
improve health and wellbeing
and tackle inequalities.
The award was celebrated in
a Durham University event.
It extended the profile of
the project with coverage in
national and regional media.
Summary
Participants in the project experienced a range of
changes in their health and well-being from their
participation in a rich artistic sensory experience
supported by artists. They became more resilient and
more confident to step outside the self-isolation of pain
and participate in artistic creativity and engage in more
practice in behavioural activities to enable their
confident control of life despite the pain. They were
more willing and receptive to consider and engage in
their self-management of pain.
So the painful journey took a different direction, and
the people emerged with a changed perspective. The
pain became less invisible, they could see and
understand it much better. They discovered
themselves through stories and creativity with others.
Their health improved through a journey of “explorative
joy” with their own selves, their creativity and
awakening through supported, compassionate creative
arts engagement.
The Unmasking Pain partnership wants to use the storytelling potential of the project to bring
the message of arts and creativity as an effective treatment for self-management of pain into
the mainstream. The partnership believes that it is imperative to counter the dominant narrative
that exercise is the only non-clinical intervention available.
Dancers
Adam Strickson
Devika Rao
Bisakha Sarker
Kali Chandrasegaram
Madhura Godbole
Mansi Dabral
Sam White
Villmore James
Yakshadruva Patla Foundation
Musicians
Aniruddha Mukherjee
Ford Collier
Joe Harris
Mussarat Rahman
Oliver Dover
Visual Artists
Jordan Mereil
Louise Grassby
Natasha Joseph
Sarah Partridge
Writer and Performer
Jenn Wilson
Photographers
Julian Germaine
Karol Wyszynski
Malcolm Johnson
Paul Floyd Blake
Tim Smith
Videographers
Gareth Dakin
Mark Baker
Nathan Towers
