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Disability and artistic performance:Reconsidering rehabilitation andassistive technologyJeanette Bicknell a , David Alter b c d e , Adrian Anantawan f &Patricia McKeever a g ha Holland Bloorview Kids Rehabilitation Hospital , Toronto ,Ontario , Canadab Toronto Rehabilitation Institute, Cardiac Rehabilitation andSecondary Prevention Program , Toronto , Canadac St. Michael's Hospital, Li Ka Shing Knowledge Institute , Toronto ,Canadad University of Toronto, Department of Health Policy, Managementand Evaluation , Toronto , Canadae Heart and Stroke Foundation of Ontario , Toronto , Canadaf Harvard Graduate School of Education , Allston , USAg University of Toronto, Lawrence S. Bloomberg Faculty ofNursing , Toronto , Canadah University of Toronto/Bloorview Kids Foundation , Toronto ,CanadaPublished online: 26 Oct 2012.

To cite this article: Jeanette Bicknell , David Alter , Adrian Anantawan & Patricia McKeever(2013) Disability and artistic performance: Reconsidering rehabilitation and assistive technology,Arts & Health: An International Journal for Research, Policy and Practice, 5:2, 166-174, DOI:10.1080/17533015.2012.737814

To link to this article: http://dx.doi.org/10.1080/17533015.2012.737814

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PRACTICE-BASED REPORT

Disability and artistic performance: Reconsidering rehabilitation andassistive technology

Jeanette Bicknella*, David Alterb,c,d,e, Adrian Anantawanf and Patricia McKeevera,g,h

aHolland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario, Canada; bTorontoRehabilitation Institute, Cardiac Rehabilitation and Secondary Prevention Program, Toronto,Canada; cSt. Michael’s Hospital, Li Ka Shing Knowledge Institute, Toronto, Canada; dUniversity ofToronto, Department of Health Policy, Management and Evaluation, Toronto, Canada; eHeart andStroke Foundation of Ontario, Toronto, Canada; fHarvard Graduate School of Education, Allston,USA; gUniversity of Toronto, Lawrence S. Bloomberg Faculty of Nursing, Toronto, Canada;hUniversity of Toronto/Bloorview Kids Foundation, Toronto, Canada

(Received 3 May 2012; final version received 4 October 2012)

We argue for the importance of disabled persons’ access to creative expression.

For disabled individuals, the development and enhancement of personhood may not betied so much to everyday functioning, as to the opportunity for creative expression thataffords dignity because it is recognized and validated by a community. Drawing on

work by Erving Goffman and Judith Butler, we argue that creative performances cansubvert the performativity (in Butler’s sense) of disability. We posit that the inclusion

of disabled persons in artistic performance settings may contribute to enhancedunderstanding and more positive attitudes toward disability by others in society.

Our views have relevance for health care professionals, for policy-makers and forassistive technology research and development. This article draws on our experiencewith the concert debut of a novel device – the Virtual Musical Instrumente (VMI)

developed at Holland Bloorview Kids Rehabilitation Hospital in Toronto, Canada.

Keywords: arts; well-being; disability; rehabilitation; assistive technology

Despite the growing interest in the interdisciplinary field of arts and health, the arts are

subject to a lingering perception of being highbrow “extras”, such that engagement with

them is not necessary for a full life. The belief that the arts, especially performing arts like

music, are superfluous rather than essential in and of themselves to human well-being affects

public policy formulation and fuels debates over arts funding (Edgar, 2012). Uncertainty

about the therapeutic value of the arts poses challenges for health science researchers

wishing to pursue such investigations (Raw, Lewis, Russell & McNaughton, 2012).

We suspect that similar attitudes about the “value” of art also negatively affect decisions

about the allocation of resources for disabled persons. In this article we argue for the

importance of disabled persons’ access to creative and artistic expression. Following

thinkers as diverse as philosopher Adam Smith (1759), Kitwood (1997) and feminist theorist

q 2013 Taylor & Francis

*Corresponding author. Email: jeanette.bicknell@gmail.com

Arts & Health, 2013

Vol. 5, No. 2, 166–174, http://dx.doi.org/10.1080/17533015.2012.737814

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Butler (2004), we understand “personhood” as a moral and relational category. We argue

that, for disabled individuals, the development and enhancement of personhood may be less

tied to their everyday functional abilities and specific skill acquisition than to their capacity

and opportunity for creative and emotional expression that affords human dignity because it

is recognized and validated by others.

The general principles of the Convention on the Rights of Persons with Disabilities

(CRPD) (United Nations, 2007) include full and effective participation and inclusion in

society. We submit that access to creative expression is fundamental to the effective

participation and inclusion of disabled persons because it is a crucial, universal aspect of

being human. Access to creative expression, especially expression that is recognized

socially, is important because such inclusion has the potential to enhance feelings of

agency, pleasure, and self-worth among disabled persons of all ages. Furthermore, such

inclusion may enhance understanding of and improve societal attitudes toward disability.

In what follows, we focus on ways to increase the presence of disabled persons within

the performing arts, with special regard for music, and to change the social attitudes that

problematize their inclusion. Our views have obvious relevance for rehabilitation

scientists, clinicians and for public policy-makers. They are also relevant for assistive

technology developers, as many physically disabled individuals cannot pursue creative

expression without the aid of assistive devices. We reformulated our own thinking about

disability, the performing arts and assistive technology through reflection on the use of a

novel assistive technology – the Virtual Musical Instrumente (VMI) developed at

Holland Bloorview Kids Rehabilitation Hospital in Toronto. Recently we were involved in

executing the public concert debut of this device by a disabled musician with a

professional chamber orchestra.

Case Example: The Virtual Musical Instrumente (VMI) Concert Debut

We considered this concert that included a disabled person’s performance with the VMI a

test case for thinking about the effects of using assistive technology in an artistic

performance setting. The VMI was designed and engineered by Tom Chau and the PRISM

Lab in the Bloorview Research Institute, Toronto. It was originally conceived to be used as

a tool for occupational therapists to use to encourage disabled children to be more

physically active. The VMI device incorporates non-contact, non-invasive, automatic

movement recognition technology with a custom computer software program that allows a

camera to detect a wide range of movement by users. In its first incarnation, the VMI

“Movement to Music” system included the production of musical sound as a means of

motivating children to play with the device. Many children involved in the initial studies

of this device demonstrated a strong affinity for music. Hence a music therapist joined the

project team to develop the device’s potential to enable these children to produce music

(Tam et al., 2007).

Gradually a multidisciplinary team of engineers, researchers, music educations and

musicians (including DAA and AA co-authors on this manuscript) adapted the early VMI

system to resemble a kind of musical instrument that requires increased levels of control

and finesse. (This took approximately 330 hours in total.) The software was written to be

as portable as possible. It can be run on any Windows computer with a webcam attached.

For the output, standard audio and video projection technology is required.

To play the current VMI, a disabled performer sees his or her reflection on a television

screen or computer monitor which is connected to a computer running the dedicated

software. Superimposed on the performer’s reflection are colored shapes; these shapes are

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“virtual” in that they exist only in the computer environment. Each shape corresponds to a

region of physical space around the performer. When the performer moves any part of his

or her body (for example, an eyebrow, head, hand) into the space occupied by a virtual

shape, a musical tone is triggered. This auditory feedback combined with visible changes

in the shape’s transparency on the monitor indicates to the performer that the shape has

been activated successfully. The number of shapes and their location, color, size and

response properties are configurable in multiple ways (Chau et al., 2003; Chau,

Schwellnus, Tam, Lamont & Eaton, 2006; Knox et al., 2005).

The current version of the VMI makes it possible for users of all ages and with even

severe impairments to create and play music. The ease or difficulty with which users learn

to play the VMI varies greatly, depending partly on the nature and severity of their

physical impairments. However, in many respects, mastering the VMI is not so different

from mastering a conventional instrument, and will depend upon the user’s level of prior

musical understanding (based on exposure to music through listening), the possibility of

regular access to the VMI, their interest in the instrument and their willingness to practice

and attend to critical feedback.

In November 2011, for the first time, the VMI was operated in a public concert setting.

Onstage with a professional chamber orchestra a disabled performer activated the software

by moving his head in order for him to perform the cello part of Pachabel’s canon.

The concert was a gala anniversary fundraiser for the charitable foundation of a major

disability and rehabilitation institution in Quebec, Canada. In keeping with the

foundation’s traditions, the concert prominently featured disabled performers in addition

to the VMI soloist who uses an electric wheelchair and other assistive technology.

These included a solo violinist without a functioning right hand who plays using an

assistive device and a dance group lead by a soloist/choreographer who dances from a

wheelchair. We had approval from the Research Ethics Board at the Bloorview Research

Institute to interview musicians and community members about their experience of the

concert. After the performance, five musicians (including the VMI performer) and three

audience members consented to be briefly interviewed about how they had experienced

having disabled persons on stage. Participants were interviewed individually and in

private, at a number of different locations. (For a list of the open-ended questions used to

guide the discussion, please see the Appendix.)

In response to a question about the significance of having disabled performers on stage

with non-disabled performers, all those interviewed after the concert reported that they had

been “deeply moved” by the performances of the musicians and dancers who had

participated in the concert. The most frequent words used to describe the VMI performer’s

attributes were “courage” and “determination”. These attributes were especially prevalent

in the remarks of members of the audience and orchestra who had had little previous

experience with disabled persons. The musicians spontaneously stressed the importance of

creative and emotional expression for all persons, including the disabled. They considered

the VMI performer as someone who, like themselves, desired to “serve” music and hence

should be enabled and allowed to express himself within an artistic context. The VMI

performer, who had been a passionate amateur violinist before the onset of his disabilities,

was surprised and thrilled by his ability to practice and perform with and among

professional musicians. He said that having the opportunity to work with the VMI gave

him a “glimpse of hope” regarding his future relationship with music.

From a technological point of view, the concert was a mixed success. Differences in

the lighting conditions between the dress rehearsal and the actual performance hampered

the VMI’s functioning and made it difficult for the performer to control the device’s sound

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production. Yet it should be noted that all interviewees had a positive view of the VMI

debut, notwithstanding these technical challenges.

Despite the technical frustrations and difficulties the VMI performer experienced, we

were impressed (and indeed greatly moved) by the amount and diversity of the feedback

he received through participation in this public concert. The performer received

psychological and auditory feedback as he heard himself operate the VMI in synchrony

and in harmony with the other performing musicians on the concert stage. The concert was

an event in which disabled and non-disabled performers interacted with each other and

with an audience of about 450 persons in a highly prestigious performance space. Hence,

the VMI technology enhanced the integration of talented disabled and non-disabled

citizens by making feasible ways of participation and inclusion that heretofore were

deemed impossible. Based on the success of this concert, we hypothesize that the

psychosocial feedback made possible through VMI music-making increases pleasure for

disabled performers, and enables them to experience a positive sense of personal identity

and self-efficacy. In turn, this feedback may constitute an intermediate causal pathway that

improves cognition, physical coordination, self-confidence and quality of life. We believe

that even if such physical or cognitive improvements cannot be identified or measured, the

significance of the psychosocial feedback that the device makes possible is enormously

valuable. Being enabled to perform publicly in concert with others may afford disabled

musicians (and aspiring musicians) a significant measure of human dignity.

The Performing Arts, Rehabilitation and Assistive Technology Research

The past 20 years or so have seen an explosion of interest in research findings about the

effects of music on human health, well-being and development. (For an overview see Wolf

& Wolf, 2011.) At the same time, advances in neuroimaging have made possible detailed

understanding of the effects of music on the human brain. (For an overview see Levitin,

2006). While both of these developments are to be applauded, to date they share significant

limitations in focus and conception. Research about the former, music and health, has been

dominated by attention to how a range of physiological outcomes are affected by music

interventions in various clinical settings. (See, for example, Biley, 2000; Evans, 2002;

Lipe, 2002). Most researchers have hypothesized that musical interventions reduce

anxiety, enhance well-being, occupy time and improve physical activity or physiological

function in ill or disabled persons of various ages (Naylor, Kingsnorth, Lamont, McKeever

& Macarthur, 2011). The emphasis has been on the effects of music that is heard

individually in clinical contexts rather than on the effects of performing music. Similarly,

much of the latter, research about the effects of music on the brain, has followed what

might be called a “pharmaceutical model” where music is considered analogous to a drug

intervention (Bicknell, 2009). This research has been largely reductive, individualistic and

uni-directional, with an emphasis on the effects of music on specific brain areas.

Our experience with the VMI’s concert debut leads us to urge rehabilitation and

neuroscience researchers alike to consider the significance of music to being human and to

include a robust conception of personhood as both a moral and relational category in their

future endeavors. Doing so would require the evaluation of social aspects of music-making

in various contexts. According to social geographers, in traditional non-clinical musical

performance settings, “the emotional dimensions of social relations are deliberately and

routinely enhanced” (Wood & Smith, 2004). Accordingly, performance in such settings

rather than in clinical settings may enhance music’s impact and offer richer emotional

experiences to disabled and non-disabled performers and audiences alike. Given the

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tendency of public musical performance settings to enhance social relations, and given the

established links between social connections and enhanced well-being, the potential

for inclusion in musical performance to enhance health and well-being seems clear.

The inclusion of broader more integrative social constructs into such research is not

necessarily mutually exclusive with clinical and neuroscience-based evaluations, and may

help the transformation of music and rehabilitative medicine from clinical settings to

community “habilitative” settings, through the use of performance and performitivity-

enhancing assistive technologies.

Contextual and situational factors are similarly important but under-studied

considerations in assistive technology (AT) outcomes research. There is disagreement

about how best to classify and assess the range and type of assistive technologies available

and the functions different devices enable for disabled persons (Jutai, Fuhrer, Demers,

Scherer & DeRuyter, 2005). It remains unclear whether devices should be classified

according to user population, type of AT, service provided, or context for use. Finally, AT

“outcomes” are conceptualized variously according to device effectiveness, social

significance, or user’s subjective sense of well-being. Despite these differences, it has

become increasingly clear that the psychosocial effects of AT are important considerations

and that psychosocial effects depend upon contextual factors. It is well known that many

assistive devices are abandoned by the disabled users for whom they are intended. High

rates of abandonment represent significant costs in money, time and distress for

individuals, caregivers, their families and public and private funding agencies. In a review

of research concerning the effects of assistive technology on the quality of life of disabled

persons, Scherer (1996) concluded that improved physical functioning by itself did not

ensure the use of assistive devices. Research has shown repeatedly that psychosocial

effects (defined as “the extent to which the adoption of the device affects the quality of life

(QOL) of the adopter”) are crucial. Disabled persons are more likely to abandon devices,

even those that improve function and are well-designed, if they feel that these devices

make them appear “freaky” or even “dehumanized” in social settings (Day, Jutai &

Campbell, 2002).

While the importance of contextual and psychosocial factors for assistive technology

adoption are now widely acknowledged, these factors have not yet received the

consideration that they merit, either by designers or researchers. A recent search of

Medline and PubMed using the terms “assistive technology”, “social aspects” and

“psychosocial” yielded less than 30 unique results. Of these, two publications discussed

the financial costs to society of assistive technology, and one focused on ethical concerns

associated with such devices. Searches for “assistive technology” and “psychosocial

feedback” did not yield any results.

In the next section we examine how closer attention to conceptions of disabled

persons’ identity, and consideration of the social constitution of personal identity, can be

fruitful for clinicians and researchers alike.

Musical Performance: Disability, Performativity and Identity

Philosophers and sociologists have long recognized that personal identity is at least

partially constituted by the perceptions and responses of others. Hence, negative social

feedback regarding bodily impairments or assistive devices will affect disabled persons’

sense of themselves and their place in society, their well-being and the meaning they place

on impairments and assistive devices. Currently, there is only a small body of research

investigating the personal meanings that disabled users place on their assistive devices

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(Pettersson, Appelros & Ahlstrom, 2007). Hocking (1999) found that, in addition to users’

skill level and confidence, abandonment of devices was also related to their perception of

themselves as disabled, as well as to broader existential concerns.

The concept of “performance” is rich and suggestive in its implications for both

classical and contemporary sociology, as well as for thinking about the social influences

on personal identity. In his seminal sociological work, The Presentation of Self in

Everyday Life (1959), Erving Goffman stressed the dramaturgical aspect of everyday face-

to-face interactions. Later in the last century, feminist philosopher Judith Butler drew on

J. L. Austin’s (1911–1960) philosophy of language, to develop her notion of the

“performativity” of gender. Austin described what he termed “performative utterances” as

those in which the speaker does or accomplishes something through an act of speech.

Saying “I forgive you” is a classic example of a performative utterance (Austin, 1962).

Butler popularized and expanded Austin’s work, arguing that the concept of gender is the

effect of reiterative action (Butler, 1990); i.e. gender identity is constituted through acts of

“performing” it and having such performances witnessed by others. She theorized that,

“There is no gender identity behind expressions of gender; gender is performatively

constituted by the very expressions that are said to be its results” (Butler, 1990, p. 25.

See also the exposition in Kukla, 2002).

Notions of “performance” and “disability” can come together productively in many

ways. Social scientists including feminist theorists and researchers have applied Butler’s

concept of performativity to disability. (For a synopsis and critical discussion, see Samuels,

2002.) We endorse the emphasis that Butler places on social behavior and interaction,

because we are committed to conceptualizing disability as socially mediated. However, we

reject Butler’s ontological commitments regarding the construction of personal identity.

That is, while we agree that the concept of “performing disability” is suggestive, we accept

neither the premise that there is nothing to disability beyond the performance of it, nor that

the performance of disability is equivalent to personal identity. More crucially, we are

committed to the possibility that creative performances can subvert the performativity (in

Butler’s sense) of disability, and to the ways in which others’ perceptions of disability

influence the self-perceptions and personal identities of disabled individuals, for good or ill.

Our experience with the VMI debut concert led us to the realization that

“performances” of disability may change or be enhanced through assistive technologies

in different settings or contexts. When thinking about the uses and meanings of assistive

technology, the impact of social and material contexts must be considered. Hence, we urge

clinicians and researchers to think beyond conceptions of users’ “natural” or “everyday”

environments, as has been customary in assistive technologies outcomes research. Certain

kinds of assistive devices have tremendous potential precisely because they can be used in

multiple contexts and beyond the quotidian. For example, when disabled musicians,

actors, and dancers perform with or without non-disabled artists in public using such

devices, they engage in new ways of “performing” their disabled identities. We suggest

that such performances have consequences for performers’ sense of themselves, their

impairments, and their enabling technologies. We suggest further that performers’

evolving perceptions will be shaped heavily by their interactions with community

members, including non-disabled arts performers, audiences, teachers, coaches, therapists,

etc. We also conjecture that community members’ perceptions of and attitudes towards

impairments as aspects of personal and social identities will be altered through exposure to

or interaction with disabled performances.

Including disabled musicians in public concerts and other events usually reserved for

non-disabled artists may do much to emphasize that disabled persons are full members of

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the human community. Successful disabled musicians in professional spheres of popular

music (e.g. Ray Charles, Stevie Wonder), and art music (Thomas Quasthoff, Itzhak

Perlman, Evelyn Glennie) comprise important role models for creative expression.

Although not all disabled (or non-disabled) musicians will attain professional status, we

should not underestimate the affects that the opportunity to perform in public may have on

an individual’s sense of self, without necessarily changing physical “function” much at all.

Such events may transform not only individuals’ sense of themselves and their assistive

technologies. Such events may also have profound effects on non-disabled audience

members and co-performers.

Conclusion

Music is both a performing art and an important part of every culture we know. Music

plays a vital part in rituals and gatherings, including worship, ceremonies, weddings,

political rallies, athletic events and funerals. Furthermore, music is often associated with

the expression of emotions. This combination of cultural significance and emotional

salience makes musical performance particularly suited to enable disabled persons to

“perform” disability differently and in doing so challenge contemporary meanings of

disability. The salience of such inclusion in the human community and the benefits that

accrue to all, not least disabled persons, seems beyond dispute.

The views expressed in this article have relevance for rehabilitation professionals,

public policy-makers, assistive technology developers and researchers. We conjecture that

disabled persons whose assistive devices afford them artistic or other creative expression

have greater satisfaction with these devices and enhanced quality of life. Our VMI concert

experience convinced us that assistive technology developers and rehabilitation

professionals must do more not only to investigate the effects of the contexts within

which such devices typically are employed and evaluated. They need also to seek

opportunities for different performance contexts and kinds of activities in which the

devices could be used, because different effects may result when devices are used in

various settings. Research that is ecologically and socially sensitive may transform how

assistive devices shape both the experiences of disabled persons and social attitudes

towards disability. Such research and practices would entail the goals of improving

disabled persons’ daily functional abilities and determining their social aspirations and

future goals. It would also involve investigating the meanings disabled persons place on

their assistive devices and on how such meanings affect their retention or abandonment of

these devices. Finally, greater understanding of the impact of disabled persons’ inclusion

in performance settings on audiences and community members’ attitudes and perceptions

is sorely needed. Seeing disabled performers on stage or seeing assistive devices “in

action” may alter thinking about them.

Most crucially, we urge rehabilitation professionals to acknowledge that artistic and

creative expression are vital to a good life and increase accessibility to the arts.

Acknowledgements

The authors would like to acknowledge the work of Tom Chau, Eric Wan, Pierre Duez, and AndreaLamont in the development of the VMI. They would like to thank Diane Savage, Senior Director,Participation and Inclusion, Holland Bloorview Kids Rehabilitation Hospital, and the HollandBloorview Kids Rehabilitation Hospital Foundation for their support of the project. They would alsolike the thank the VMI performer and all who agreed to be interviewed. This research was approvedby the Holland Bloorview Research Ethics Board on October 25, 2011 (File no. 11–260).

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Wood, N., & Smith, S.J. (2004). Instrumental routes to emotional geographies. Social & CulturalGeography, 5(4), 533–548.

Appendix: Post-concert Interview Questions

1. How did you first hear about or became involved with the VMI?2. What do you see as the significance of having disabled performers on stage with non-

disabled performers?3. What do you see as the advantages and disadvantages of having adaptive technology used on

stage?4. What kinds of challenges have you faced in relation to this concert?5. What about the concert and about the VMI performance stands out most clearly in your

memory?6. What is important to you about the VMI, and how would you like to see it used? What should

the next steps be?7. Are there any questions I should have asked you but didn’t?

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