[Special Issue on Music Therapy and Disability Studies]

Dis/Abling Musicking: Reflections on a Disability Studies Perspective in Music Therapy

By Maren Metell

Abstract

This theoretical paper aims to explore the role of a disability studies perspective in music therapy. Disability studies in the context of music therapy is a field that is under development. I argue that a disability studies perspective both supports and challenges music therapy models, practice, and research. A disability studies perspective provides a theoretical framework for social change and the appraisal of diversity, as well as it challenges attitudes and values. This paper suggests dialogues and collaboration between music therapy and disability studies.

Keywords: disability studies, music therapy, social model, dialogue

Introduction

…the politics of disablement is about far more than disabled people, it is about challenging oppression in all its forms. … Like racism, sexism, heterosexism and all other forms of social oppression, it is a human creation. It is impossible, therefore, to confront one type of oppression without confronting them all and, of course, the cultural values that created and sustain them. (Barnes 1996, ix)

In this paper, I consider what the area of disability studies can offer music therapy. Disability studies and music therapy are both growing academic fields. The two disciplines have seemingly avoided one another, and while disability studies are critical to music therapy (see Lubet, 2011; Straus, 2011), there is little literature in music therapy that discusses disability studies. My first encounter with disability studies was in Berlin, when I began to study music and special education nine years ago. As I have been interested in materialistic/critical perspectives in both music therapy and special education, a disability studies perspective fits well into my understanding of normalcy, disability, and participation. Over the last few years, I have been utilizing literature from disability studies, because, for me, disability studies is very relevant and necessary in the context of music therapy, disability, and social participation. This paper is an attempt to explore the relationship between music therapy and disability studies. My own position is one of a non-disabled, white, European woman with access to education and other privileges. This paper is partly written in Norway and partly in Brazil, the two countries where I have stayed the last few years—two countries that present a huge diversity in terms of worldviews, perceptions of disability, social structures, and culture. Similarly, the fields of music therapy and disability studies are diverse in terms of approaches and traditions. My own training in music therapy at the University of Bergen has informed my approach to music therapy, which is based on community music therapy and resource-oriented perspectives. In the context of disability studies, my selection of literature is shaped by previous interests in materialistic perspectives in regards to education and disability.

From my point of view, a disability studies perspective challenges and supports music therapy practice and research and is relevant for further development of the field of music therapy. In order to explore this assumption, I will provide a brief background on the social model of disability, as it forms the foundation for disability studies. Building on this, I will explore what a disability studies perspective offers in terms of looking at the concept of disability and therapy, practice, and research.

The Social Model and the Medical model

In our view it is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society. (UPIAS, 1976, p. 14)

The “social model of disability,” coined by disabled activist and researcher Mike Oliver, can be traced back to the disability movement in the 70’s. The social model is often seen as the foundation of disability studies. It describes not one perspective, but a variety of approaches (see Pfeiffer, 2002). What these approaches have in common is that they are in contrast to the individualized medical model, that is, they locate disability in relationships and environments and not in the individual. While traditionally disability has been linked to tragedy, disability studies looks at disability as human diversity. Internationally, the social model of disability has influenced policies and agreements. The United Nations [UN] (2006) has recognized that:

..disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others. (UN, 2006, Preamble to the Convention on the Rights of People with Disability)

Furthermore, the social model influenced the International Classification of Functioning, Disability, and Health (ICF) developed by the World Health Organization (2001). However, there has been a critique that the ICF, even when considering environmental factors, still conveys disability as an individual problem and is based on a medical model which objectifies disability as a deficit (Barnes & Sheldon, 2010; Hirschberg, 2008; Pfeiffer, 2002). One main criticism to these developments is that in practice, the social model is not effective.

There have also been critics of the social model from both outside and within the disability movement. Objections are, for instance, that the social model ignores subjective experiences of impairment, making it impossible to incorporate other social dimensions (e.g. race or gender) and thus, the social model is an inadequate theory of disablement (Oliver, 2003).

From a disability studies perspective, the ontology and epistemology of music therapy would need to rely on a social model of disability. Lubet (2011) and Straus (2011), both scholars in the context of music and disability studies, present a very critical view of music therapy. Lubet (2011) considers literature in the context of music within the fields of music therapy and special education as medicalized. He states that there is “little extant published music [therapy] research that employs social model theory as its foundation” (p.7). Straus (2011), with reference to the American Music Therapy Association definition of music therapy, concludes that “music therapy is a normalizing enterprise, bound up with the medicalization and remediation of disability” (p.158). Both link music therapy exclusively to a medical model and do not take into account the diversity of approaches and theories within music therapy, perhaps because the ways in music therapists have presented themselves in print, do not represent the diversity of practices and orientation in the field.

The social model has been influential in music therapy approaches in the UK and Scandinavia, but the social model does not seem to have an important impact on the music therapy discourse in general. As Rolvsjord (2010) points out, the medical model can be thought of as “a grand narrative in music therapy that is taken for granted and not discussed explicitly” (p. 25). Bruscia’s (1998) definition of music therapy apparently builds on a medical model, as indicated by the use of the term “intervention” and the idea that a therapist helps a client. Further, there is a demand for evidence-based practice that is linked to a medical model. However, several contemporary music therapy perspectives can be seen in the context of the social model. Resource-oriented perspectives (Procter, 2001; Rolvsjord, 2010) are based on empowerment philosophy, positive psychology, and current musicology, and emphasize user involvement and focus on the clients’ strengths and resources. Community music therapy (Pavlicevic & Ansdell, 2004; Stige & Aarø, 2012) employs social and ecological perspectives and explores the relationships between music and health, individuals and communities. Feminist music therapy (Hadley, 2006) addresses analyses of power in relationships, and personal and social identity.

The Concept of Diversity vs. Pathologizing Differences

People must become aware of the value assumptions of the ontology and epistemology which are handed to them as they grow up. They must become critical, skeptical thinkers. (Pfeiffer, 2002)

Do music therapists have a deficiency-based perception of their clients? A disability perspective is a call for the appraisal of differences and the rejection of oppression. Do music therapists aim for more normative behaviors from clients or for more acceptance of diversity in society?

Professionals in the Western world tend not to take into account the cultural and social context of the perception of impairment and believe that perceptions of impairment and normality are universal concepts (Barnes, 2010). I believe that the Western concept of disability that tends to dominate the discourse of music therapy needs to be challenged. To illustrate this, I want to refer to an example from the World Congress of Music Therapy in Austria this year. At a roundtable, autism was presented as a challenge for the family, society, and children who were described as low-functioning. While this does not mean that all music therapists think of children with autism as a challenge, this seems to be a prevailing view. The terminology being used at the roundtable clearly relied on the medical model. Contrastingly, the focus of the presentations was mainly on the resources of the children, on interaction, and creativity. However, as music therapists it is important that we reframe our understanding of disability from a pathology-focused one to a socio-cultural one. Disability studies offers concepts that can reframe our practice, enrich our thinking, and promote more egalitarian relationships.

The autistic community has advocated the idea of neurodiversity, the idea that people perceive the world differently. Their aim is to achieve a broader acceptance of neurological difference in society (http://autisticadvocacy.org/policy-advocacy/position-statements/). At the same congress in Austria, Sydenstricker (2014) advocated the idea of diversity with reference to a project in Rio de Janeiro where the aim is the promotion of the acceptance and valorization of human differences. A perspective that is much more inspiring than the idea of disability as a deficit.

Ansdell (2003) and Rolvsjord (2010) have emphasized that the discourse of music therapy matters as it informs our practice and thinking. Using terminology that is linked to a medicalized view of disability will influence how we interact with people and think about what we do. Nevertheless, music therapy is always connected to a context and to a system in which we need to communicate with others. I recently advocated music therapy for a population group with a degenerative disorder. I focused on resources and well-being and got the response “yes, that sounds nice, but you need to say what music therapy can do about their physical and mental health problems, otherwise it seems like this is only about having fun.” While I would like to argue that having fun would be a very legitimate aim as well, this illustrates for me the challenge for music therapy to achieve legitimization beyond a problem-based approach. A problem-based approach might provide funding and explain the impact of music therapy on those thinking from a medical model perspective, but it jeopardizes our practice and values. However, as Rickson and McFerran (2007) point out, music therapists continue to be challenged to prove the effectiveness of music therapy in special education contexts. This shows the complexity of the process of creating places for practice. The situation is much easier when music therapists are employed by user organizations and collaborate on the development of practice (see for example Noone, 2008). However, music therapy is wanted and needed in contexts that rely on a medical model and music therapists need to find a way to legitimate music therapy without contributing to the disempowerment of disabled people.

There is a dilemma in criticizing structures and nurturing them by using labels (Dederich, 2009, p. 17f). One can then ask if it makes sense to use labels in music therapy. I, too, have written explicitly on children with visual impairment, as my aim was to develop theory and practice in the context of music therapy, visual impairment and social participation. Moreover, my aim was to advocate music therapy for those working in this context. It felt therefore necessary to use the label of visual impairment. However, even though adopting a social model perspective and framing visual impairment as a different form of perception, visual impairment or blindness is still associated with the concept of deficit. Reframing impairments as not pathological but different feels better than nothing, but it is still unsatisfactory.

Practices, Models, and Values

In an individual model perspective, disability is seen as a personal problem. Music therapy would then be seen as a treatment and solution for an individual problem. In a social model perspective, disability is seen as human diversity and therapy is aimed at changing structures and promoting empowerment and participation. Disability activists would probably argue that too much music therapy practice is individual-based and that there is not enough practice directed at environmental and cultural barriers. Current music therapy literature shows both trends of providing evidence and showing effects within a medical model approach and trends of looking on musicking in everyday life and community.

The model of disability we advocate informs our relationships. From a medical model perspective, the expert-client relationship is the dominant perspective; within a social model perspective, the relationships are at least equal, and if not, the client is in charge. This links to an empowerment perspective in music therapy where mutual relationships are emphasized (Rolvsjord, 2010). According to DeNora (2000), different musical activities afford different possibilities for action and appropriation. As Bonde, Ruud, Skånland and Trondalen (2013) show with their anthology “Musical Life Stories,” people engage in health promoting activities with music in their daily life. This contributes to the understanding that the client is the expert for her/his own use of music, not the therapist.

Many music therapists believe that music therapy is an emancipatory practice. However, music therapy training often focuses on individual and group music therapy and only to varying degrees on how to practice community music therapy. Much music therapy training uses a medical model when defining disability. Perhaps this is because, as Linton (1998) points out, people have an interest in keeping the current meaning of the notion of disability within its structures.

...because it is consistent with the practices and policies that are central to their livelihood or their ideologies. People may not be driven as much by economic imperatives as by a personal investment in their own beliefs and practices, in metaphors they hold dear, or in their own professional roles. (Linton, 1998, p.10)

One challenge is therefore to ensure that music therapists do not reproduce the system they work in. Let us consider a music therapist who aims to reduce behavior seen to being stereotypical of children labeled as blind (as for instance making clicking noises to get an echo for orientation back). This music therapist would not only fail to acknowledge the resources and capacities of the child, but would also align with societal norms which are that behavior that is considered to not be appropriate (within the context of “normative” perception) is not desirable.

While there are music therapy practices which are not emancipatory, there are examples of music therapy approaches that aim to counteract oppressive systems and are linked to activism. Baines (2013) explores music therapy as anti-oppressive practice, an approach developed in social work focusing on counteracting power imbalances. Rolvsjord (2010) and Solli (2014) have examined music therapy from a user-led perspective and challenge the traditional expert-client relationship. Both of them have linked their work to empowerment philosophy. Boxill (Stige & Aarø, 2012) was the founding director of Music Therapists for Peace and emphasized music therapy as peace activism (see also Curtis, 2012). Building on Boxill’s work Vaillancourt (2012) has developed an approach that focuses on peace and social justice. These approaches have in common an aim for social change.

“Nothing About us Without Us”: A Disability Studies Perspective on Research

Disabled people have come to see research as a violation of their experience, as irrelevant to their needs and as failing to improve their material circumstances and quality of life. (Oliver 1992, p. 105)

Disability activists have argued since the 70’s that research does not serve them, but instead contributes to their oppression. Activist and researcher Mike Oliver (1992) coined the term “emancipatory disability research,” which aims to facilitate the process of empowerment through research.

This does then mean that the social relations of research production do have to be fundamentally changed; researchers have to learn how to put their knowledge and skills at the disposal of their research subjects, for them to use in whatever ways they choose. (Oliver, 1992, p. 111)

Even though there have been claims in music therapy stating that research should be relevant for the participants and contribute to empowerment (Stige & Aarø, 2012), Oliver (1992) certainly challenges traditional thinking when it comes to research in music therapy. Music therapy research often continues to take place within a deficit model perspective. As Barnes and Sheldon (2007) emphasize, research that builds on the ontological foundation that constructs people as having needs that are "special" will not lead to emancipatory research.

In line with feminist perspectives, a disability studies perspective challenges the values of research production and especially the question as to who benefits from the research. Stone and Priestley (1996) therefore ask:

What will the research achieve in terms of improving the lives of those whose selves become "sources" and whose meaning becomes "material"? Will it achieve any more than furthering academic careers and publication lists? (p. 703)

Stone and Priestley (1996) have, in a paper called “Parasites, pawns and partners: disability research and the role of non-disabled researchers,” identified six principles of emancipatory disability research to transform “prawns into partner[s]”.

These six principles are:

"the adoption of a social model of disablement as the epistemological basis for research production
the surrender of claims to objectivity through overt political commitment to the struggles of disabled people for self-emancipation
the willingness only to undertake research where it will be of practical benefit to the self-empowerment of disabled people and/or the removal of disabling barriers
the evolution of control over research production to ensure full accountability to disabled people and their organizations
giving voice to the personal as political whilst endeavouring to collectivize the political commonality of individual experiences
the willingness to adopt a plurality of methods for data collection and analysis in response to the changing needs of disabled people" (p. 706)

However, emancipatory research involves many challenges in practice (Stone & Priestley, 1996). It is, for example, often claimed that the researcher should transfer the power over the research process to the participants. As Stone and Priestley (1996) highlight, this is not an easy task as participants are not a homogeneous group. Another challenge is the dissemination of research results. As a response to this challenge, Goodley and Moore (2000), for example, used graphic illustrations to make research findings accessible for people with the label of learning difficulties.

One common aim in community music therapy research (Stige & Aarø, 2012), feminist research (Rolvsjord & Hadley, submitted) and disability studies (Barnes & Sheldon, 2007) is to strive for social change. Barnes and Sheldon (2007) argue that research must seek to understand and to counteract economic, political, and cultural forces that create and sustain disability. “If we aren't, then what's the point in doing it?” (Barnes & Sheldon, 2007, p. 243).

What Can a Disability Studies Perspective Offer Music Therapy?

Participation in culture – whether through consumption or production is, we believe, the means through which we connect with others, the way we tell each other that we are not alone but are together (Batt-Rawden, Trythall & DeNora, 2007, p. 65).

What can disability studies offer music therapy and what can music therapy offer disability studies? As pointed out above, a disability studies perspective questions attitudes, values, and the relationships between health professionals and clients. It is not the aim of this paper to conclude that there should not be therapy or professional expertise. As I am currently working as an adviser with children who are labeled as blind, and with their families and the system around them, this would be difficult for me to state. However, I want to argue that it is meaningful to rethink and stimulate discussions on how therapy and professional expertise is provided and how we talk about it. I agree with Evans (2004), who argues from a rehabilitation psychology perspective, that the problem is not the existence of professional expertise, but how it is performed. One common perspective in music therapy and disability studies is the concept of empowerment (Procter 2001, Rolvsjord, 2010). For Procter (2001), music making is "building on people's experiences of who they are and what they can do" (Procter, 2001, p. 96). An empowerment perspective leads to a rethinking of roles and relationships and honors the power of the participants.

Disability studies provides humanistic and social perspectives. One objection to the relevance of this perspective might be that humanistic and social perspectives have been implemented in music therapy for many years. Nevertheless, I want to propose that a disability studies perspective provides something different and somehow more radical to the humanistic and social perspectives of disability that were dominated by able-bodied scholars until the 70’s.

In terms of our practice of music making within a therapeutic context, Small (1998) offers an approach to music that is radically democratic and emphasizes the social and political dimensions of music by stating, “for whatever else it might be, all musicking is ultimately a political act.” Small’s notion of musicking provides a link between music therapy and disability studies. As Procter (2004) proposes, “Music therapy – like all forms of musicking –is a political act. To deny this is simply to side with the powerful” (p. 214).

Often, when I tell people that I am a music therapist, I hear “Oh, music therapy? This is about making music with people with disabilities, right?” Yes, maybe, but not necessarily. One challenge for music therapy is certainly the use of the term music therapy in inappropriate contexts. There is still a need to make it clear that music with disabled people is not necessarily music therapy. Lubet (2011) states that participation in music is a human right and therefore, it is also a disability right. I want to argue that a disability studies perspective can help us to argue for equal access to music. This closely links to the claim that music therapists should not align with oppressing structures. Another challenge is the term “therapy” in general. Activists and scholars of disability studies have traditionally been very critical of all kinds of therapy. This is understandable when considering the struggle against an individualized notion of disability, but it is also limiting. It seems limiting because it does not acknowledge that many people across a wide spectrum of needs find therapy useful, including people who are considered non-disabled. Music therapists can have an important role in making musical activities accessible. As Lubet (2004) points out, music is not per se offering participation. Thus, one possible role for music therapists is to facilitate participation in mainstream contexts. In line with this, Rickson (2012) has developed an approach to school consultation and emphasizes that this practice can meet the needs of inclusive education.

The practice of community music therapy illustrates for me what music therapy can offer disability studies—arenas of social participation in culture. As Keil and Feld emphasize, “Music, is our last and best source of participatory consciousness, and it has this capacity not just to model but maybe to enact some ideal communities” (Keil & Feld, 1994, in Pavlicevic & Ansdell, 2009, p. 373). The field of music therapy cannot be compared to other therapies because of the social and cultural dimensions of music. Furthermore, the diversity of music speaks to a diversity in terms of how music therapists can work with communities (see for example Pavlicevic & Ansdell, 2004).

Musicking can be understood as a universal design, as a space where everyone can participate (Metell, 2011; Metell & Stige, submitted). This space is shaped by the universal design of the physical environment, musical activities and instruments. Music therapists have a unique expertise in creating spaces for musical participation. However, as I understand the autism activist Sinclair (2010), we, as “NT therapists” (NT is the abbreviation for neuro-typical, a term coined by the autistic community), are not able to create such spaces without close collaboration.

A good NT teacher, therapist, job coach, life skills trainer, or other service provider can certainly create an environment in which autistic people have positive experiences and learn useful skills. But even such positive and helpful environments still have characteristics of "NT spaces," because NT people are in charge and NTs are making the rules. The very fact that NTs are creating and managing a program or a service, for the benefit of autistic participants, conveys the perception that autistic people are helpless and dependent on NTs to take care of us. (Sinclair, 2010)

Thus, it is important that we collaborate with the community to whom we are offering our competencies. Headlam (2006), based on the life with his son with ASD [1], suggests that people should learn to “hear autistically” and to value the differences of an autistic worldview. One interesting example in the music therapy literature in which neurodiversity is valued can be seen in the creation of “sensory friendly concerts” (http://www.themusicalautist.org/sensory-friendly-concerts/; Shiloh & LaGasse, 2014). These are concerts facilitated by community music therapists, but based on premises of the autistic community (accommodations include noise reducing headphones are available, people can go on stage, and the lighting is soft).

I would like to argue that music therapy, as a field, would benefit from collaboration with disability scholars and activists in general. This applies, for example, to the development of curriculum of music therapy courses that should be informed by a disability studies perspective in contrast to a medical model of disability. In addition, more substantial dialogues with user organizations could enhance our understanding of music therapy. Their perception of music therapy and their thoughts on how music therapy practice should be performed, would contribute to the development of emancipatory practice. Furthermore, there is a need for academic dialogue between music therapy and disability studies. For example through roundtables at conferences and collaborative projects.

Conclusion

This article has attempted to show what a disability studies perspective might offer the field of music therapy. A disability studies perspective calls for a rethinking of the model music therapists practice in, of attitudes towards disability, and collaboration in terms of practice, research, and music therapy training. In conclusion, I consider the followings points as interesting for further discussion and reflection:

The medical model needs to be challenged and should not be accepted as the implicit narrative of music therapy
Music therapists should strive for promotion of empowerment and emancipation independently of the context they are working in.
The discourse of music therapy informs practice and thinking. It is therefore important to be conscious about the use of language and labels.
It is important to be aware of the fact that music therapy is not apolitical and make sure that we do not reproduce the system that produces disability and disempowerment.
Research should promote empowerment and emancipation and produce accessible and practical findings.
Collaboration with user organizations and disability studies scholars and activists can enhance the development of music therapy.

In my view, a disability studies perspective challenges music therapy practice and the use of labels and approaches to disability, diversity, and research. At the same time, this perspective provides new ideas and different concepts of understanding that emphasize the political power of music therapy. Interdisciplinary dialogues between music therapy and disability studies would provide a development of both fields and could become a vibrant field of scholarly discourse and collaboration.

Acknowledgements

I would like to thank Brynjuf Stige for comments on an earlier draft.

Note

[1]For a discussion of person-first vs. identity-first language in context of autism see http://autisticadvocacy.org/identity-first-language/"

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