[Special Issue on Music Therapy and Disability Studies]
The Relevance of Disability Perspectives in Music Therapy Practice With Children and Young People Who Have Intellectual Disability
By Daphne Rickson
Abstract
This paper considers the ways in which a disability studies orientation can inform music therapy approaches with children and young people who have intellectual disability. A broad overview of medical, social, cultural and affirmative models of disability precedes a vignette describing music therapists and young people with intellectual disability engaged in a music research project which was grounded in the affirmative approach. The young people valued opportunities to be engaged in both music and research activities, and worked hard to express their views and to act upon them in the music context. However several expressed relatively high levels of ambivalence regarding potential opportunities that were afforded to them in the wider community, highlighting the need for adults to carefully monitor the "activist" stance in the context of individual experience. The significant potential for music therapists to engage in participatory approaches with children and young people with intellectual disability is highlighted.
Keywords: music therapy, disability studies, participatory action research, children, intellectual disability, program
Plain English Abstract
The word disability is confusing. There are different ways of thinking about disability. And so there are different ways of working with people who have disabilities. This story is about how music therapists worked with young people with intellectual disability. The adults wanted to hear what the young people had to say. Everyone wanted to understand each other better. Everyone liked doing music and research and worked hard. Some things, like meeting new people and going to new places, were scary. It is important for music therapists to think carefully about how they guide young people with intellectual disability to try new things. Young people like to be independent, but still need help. Everyone learnt a lot from doing music and research.
Disability Theory
Communities decide what is "normal", based on the characteristics, behaviour, and beliefs of the majority of its members. People who look or behave differently are often judged to be "abnormal", and frequently oppressed.
History shows disabled people[1] have been systematically and systemically exposed to political, economic, cultural, and social degradation. They have been pitied, marvelled at, or feared, but never just accepted for who they are (Keith, 2001, in Cameron, 2008). Living within societies where disability is consistently talked about in negative terms is naturally demoralising and disempowering. Unfortunately, the persistent portrayal of disability as tragic and burdensome has led many disabled people to believe they are less normal, less capable than others, and to develop a sense of self-pity, shame, and helplessness. In these circumstances they either accept their diminished standing or reject or hide their disabled status, and are not likely to develop a positive identity (Swain & French, 2000). Identity is explicitly tied to the ways in which people talk about themselves and in which others talk about them. Charlton (2000) noted that powerlessness and lack of authority forces disabled people into cycles of dependency, unable to know themselves, their needs, capabilities, and options and this leads to their exclusion in many and varied ways. It is not surprising then, as Snyder & Mitchell (2006) suggest, that disability scholars and activists often resist identifying their diagnosis in favour of conveying stories of their experiences.
Disability oppression is naturally complex and multileveled. The ways in which people experience and therefore recognise, resist or tolerate their oppression, differs according to their political, economic and cultural contexts.
Four "Models" of Disability
The basic premise of what is known as the medical model of disability is that disability results from individual deficiencies or abnormalities that prevent people from participating in the activities of their communities. Proponents of this model therefore assume that disabled people need intervention and treatment from experts who can rehabilitate their impairments and improve their functioning. This in turn proposes that disabled people would want to be different, to be other than as they are (Swain & French, 2000). Medical and rehabilitation professionals have been accused of contributing to the social oppression of people with disabilities because they become trapped in the role of "expert fixer." From positions of power they decide what is good for people and what needs to be done, and often have no consciousness of how their theories and activities impact disabled people. Worse, many ignore the ways their practice is perceived by and impacts disabled people simply because it constitutes a threat to their professional identities (Cameron, 2008; Goodley, 1997; Lane, 2006; Rolvsjord, 2006b).
In contrast, the social model of disability views disabled people as subjugated by an uncaring and antagonistic capitalistic society. In this model oppression is primarily attributed to increased demands for productivity (Anastasiou & Kauffman, 2012; Snyder & Mitchell, 2006). While it is acknowledged that bodies may be impaired, disability is considered to be the result of social, environmental and attitudinal barriers that prevent participation and personal growth (Cameron, 2008; Hemingway, 2008). Since it is not a medical matter, the spotlight turns away from impaired bodies, medical intervention, and rehabilitation toward valuing diversity and achieving social change, to ensure diverse individuals or groups can realise their right to fully participate in the life of their communities.
However, the argument that disability is entirely social and has nothing to do with the body is also contentious, primarily because it ignores the power/knowledge relationship that underpins definitions and interpretations of impairment. The cultural model of disability focuses specifically on this relationship by viewing disability as “a tool of cultural diagnosis … (which provides) a way of understanding how formulas of abnormality develop and serve to discount entire populations as biologically inferior” (Snyder & Mitchell, 2006, p. 12). The cultural or minority model of disability is arguably most visible in communities such as the Deaf Community. Rather than viewing deafness as a disability, Deaf people take pride in their linguistic and other cultural differences (Lane, 2006). Similarly, communities of Autistic people take pride in their different ways of thinking and doing things (Jaarsma & Welin, 2012). Members of Deaf communities have no desire to be hearing, just as members of Autistic communities have no desire to be neurotypical. Like the social model of disability, the cultural model rejects the medicalization of disability. Some practices, such as the use of cochlear implants for deaf children for example, are strongly contested (Lane, 2006; Sparrow, 2005).
Anastasiou & Kauffman (2012) point out that social models fail to highlight the dissimilarities among and within disabilities. Arguing that disability can be attributed to the complex interaction of biological, psychological, cultural and socio-political factors, they posit that this omission oversimplifies the social model so that in many ways it simply mirrors the errors of biological determinism (Anastasiou & Kauffman, 2012). Further, it is not sufficient to maintain a solely social or cultural perspective of disability because the recognition of diversity brings with it a concern for social redistribution. Complete rejection of the medical model could result in a reduction in public support and welfare programmes which in turn could have extremely negative consequences for many disabled people. Social inclusion depends on attending to welfare as well as antidiscrimination rights.
The affirmative model of disability does not deny that there may be a negative side to impairment. Rather it recognises that impairment is not always undesirable and associated with pain or illness, but can be valuable, exciting, and intrinsically satisfying (Campbell, 2008). Swain & French (2000, p. 569) contend that the affirmative model encourages a non-tragic view of disability and impairment which encompasses positive individual and collective social identities for disabled people. In this model the experience of impairment, over time and in various circumstances, is taken into account alongside the experience of living within a disabling society. The affirmative model is not about disabled people celebrating unequal oppressive social relationships. People who adhere to the affirmative model are frequently protesting and demonstrating, particularly through the disability arts movement, against marginalisation and exclusion (Cameron, 2008; Whitehurst, 2007). Rather, the affirmative model is about validating the lives and experiences of people with impairments and enabling them to make sense of themselves as actors in their own cultural worlds (Willis, 2000, in Campbell, 2008).
Music Therapy Theory
There are important parallels between the ways in which disability has been understood, and the growth and development of music therapy theory and practice. Ruud (2010, p. 178) notes, “there is a correlation between the ways therapists and their patients identify themselves and interact with each other, and the way they understand the human body and the relationship to the world more generally”.
Music therapy has experienced movement away from traditional individualised psychotherapy-based treatment, described by Ansdell (2002) as the consensus model, to practice which builds on a more flexible ecological understanding of the complex relationships between music, people, health, illness and well-being (Ansdell, 2014). Since the turn of the century there has been a call for more participatory, resource-oriented, ecological, and activist approaches to music therapy in many countries (Stige, 2014) in the forms of Culture-Centred Music Therapy (Stige, 2002), Community Music Therapy (CoMT)(Ansdell, 2002, 2005; Pavlicevic & Ansdell, 2004; Stige & Aaro, 2012), Resource Oriented Music Therapy (ROMT)(Rolvsjord, 2010) and Anti-oppressive music therapy (Baines, 2013). As music therapists are increasingly leaning towards practice which emphasises human rights and social justice, the relevance of the affirmative model, with its strong links to identity formation and protestation through arts movements, can be easily recognised.
Music therapy practice in the 20th century was grounded predominantly in the medical model. Music therapists worked with individuals or small groups of patients within well-defined and "secure" boundaries, with goals to alleviate symptoms, change behaviour, or facilitate their client or patient’s individual psychological insight (Ansdell, 2002). More recently music therapists have drawn on the knowledge that people are affected by the communities they interact with (Bronfenbrenner, 1979) and have begun to work not only in local communities, but with them (Stige, 2002, p. 214). Community music therapists cultivate musical communities by facilitating musicking wherever it is needed, while enabling possibilities for community participation and opportunities for empowerment through music (Ansdell, 2005; Procter, 2004; Rolvsjord, 2006a; Ruud, 1998; Stige, 2004, 2006). Musicking can lead to increased well-being and potential in individuals, relationships, milieus and communities.
Community music therapy encourages musical participation and social inclusion, equitable access to resources, and collaborative efforts for health and well-being in contemporary societies. It could be characterised as solidarity in practice. In this way community music therapy can be quite different from individual treatment, sometimes closer to practices such as community music, social work, and community work. (Stige & Aaro, 2012, p. 5)
Community music therapists attend to universal values of human potential, mutual care and social justice (Curtis, 2012; Vaillancourt, 2012). Thus they are able to relate human needs to a wider perspective on human rights, and "musical justice" is increasingly part of their agenda as they engage in music projects which enable privileged, marginalized and excluded people to come together as equals (Ansdell, 2014; Rickson & Skewes McFerran, 2014). Accordingly, therapists are being reminded to acknowledge their privileged cultural status and the powerful influences that are often taken for granted when assuming an expert stance (Baines, 2013; Hadley, 2013). Rolvsjord (2010) in particular, argues the importance of supporting people to achieve what is significant to them, rather than holding onto the "expert" role. Community music therapists might regard themselves as musicians who are equipped with expert skills to work therapeutically and to resource others – rather than as a paramedical expert (Procter, 2001).
However, Sue Baines (2013) suggests that the generalizable and politicised terms that have been used to describe "community music therapy" do not point clearly enough to this shift. She suggests that music therapists who take up an activist stance might find the term "anti-oppressive music therapy" more useful. While acknowledging that community music therapy involves a social justice critique, she argues that the term anti-oppressive more clearly describes attempts to “combat, disrupt, subvert, and/or undo oppressive barriers” (p. 160). She draws on her sister Donna Baines’ (2008) publication to argue that “an important way to resist practices that suppress difference and dissent is to constantly defend and develop ways to give voice to the voiceless and to bring the needs of marginalized clients and communities to the attention of decision makers.” (p. 130).
The ACTIVE Music Project
The following paragraphs describe a recently completed collaborative project which involved three music therapists, including myself, and twelve young people with intellectual disability making music together – with the specific aim of giving voice to the young people (Rickson et al., 2014). They belonged to ACTIVE, a group which provides support to young people with intellectual disability as they move from school to the adult world. ACTIVE programmes are specifically designed to help them to plan and move into further education, employment and local community activities. We wanted the young people to tell us how music making might affect their lives as they transitioned from school to work and to use that information to guide programming at the organisational level. We also felt strongly that the project should take place in a university environment since this is a typical site for young people to learn and engage in research activities.
We began with several assumptions. Firstly, it was understood that the developmental period of transition from late adolescence to young adulthood is a time of significant change which brings new opportunities that are coupled with uncertainties, challenges, and risks; all of which can be intensified for young people with disabilities (Blacher, 2004; King, Baldwin, Currie, & Evans, 2006; Morningstar, Kleinhammer-Tramill, & Lattin, 1999). These authors note that in many cases, young people with intellectual disabilities who are leaving school do not have the necessary academic, social and living skills required to live independently; and therefore need on-going support and education past the compulsory years of schooling. When they are not sufficiently supported during this time, they can develop feelings of isolation, lowered self-esteem, and lack of hope for the future (King et al., 2006).
Secondly, it was understood that music was an accessible, popular and suitable medium for engaging young people, and would provide opportunities for expressive communication that might otherwise be difficult for them. A focus on active participation and collaboration through musicking would support the young people in their efforts to develop individual mastery, independence, self-esteem, and autonomy (Stige & Aarø, 2012) and strengthen interpersonal relationships, and foster musical community (Pavlicevic & Ansdell, 2004; Stige, 2010).
The third assumption was that the success of the project would rest on the young people themselves determining the precise activities they would engage with, evaluating and improving their programme according to their own values, and communicating their findings to organisations responsible for programmes. Finally, it was assumed that interaction with wider communities would contribute to the mutual development of positive individual and collective social identities. The young people would be able to interact with university students and staff members in typical contexts, their presence would enrich and enliven the environment, and their positive contributions would challenge potentially negative perceptions and attitudes.
Participatory action research provided an appropriate framework for this approach since it is highly collaborative and empowering and by its very nature would contribute to the self-determination that the young people would be seeking. Participatory Action Research (or PAR) is a form of scholarship the role of which is to gain “a better understanding of the ‘social construction of reality’ and [to engage in] explorations into the phenomenology of knowledge, experience and society” (Chevalier & Buckles, 2013, p.10). It involves people working together, and learning through experience and real action, and as such is a process where the ends are always embedded in the means. Some forms of participatory action research are focused on solving practical problems. Others have more emphasis on strengthening participants’ self-awareness, and awareness of life in society, while aiming for them to begin to define themselves differently, and to realise that their circumstances are not necessarily inevitable. Researchers take “steps toward social change through a series of collaborative action-reflection cycles” (Stige, 2005, p. 409) which, like other forms of action research, involve assessment, planning, action, evaluation and reflection. Thus participatory action research is a form of self-experimentation which relies on reflexivity and active risk-taking. Participants need to think and act carefully, with rigour, and with genuine caring for expressions of difference and otherness (Chevalier & Buckles, 2013, p. 5). The research activities would contribute to the young people’s overall well-being and the development of skills that that would increase their potential for self-advocacy and their prospects of engaging in other meaningful activity or work.
Participatory action researchers aim to help the group become self-determining and must therefore be committed to minimising dominance. The different experiences and skills that participants bring inevitably influence the direction of the investigation, and so the ways and extent which research activities are controlled by and shared among participants can vary (Bray, Lee, Smith, & Yorks, 2000). It can be easier to think of PAR as a process which involves the transfer of skills, abilities, and knowledge, with teams often having to involve specialists because of a particular skill that they bring. Some participants, including some of the young people involved in this project, experience serious barriers to participation in participatory research processes, because they have limited cognitive or communication abilities (Stige, 2005). Action research methodology is therefore not often used with people who have intellectual disability, although examples are emerging (Conder, Milner, & Mirfin-Veitch, 2011; Stevenson, 2014; White & Morgan, 2012) and it “appears to be particularly enabling for young people, providing a ‘live’ and dynamic field of inquiry” (Stevenson, 2014, p. 46). Every participant’s contribution is considered to be equally valid and useful; and with care each can be authentically engaged in a process which aims to find out how he or she understands his or her world.
All participants in the ACTIVE music research project were considered to be both musicians and co-researchers, and were supported to contribute in the ways and at the levels they desired. The sessions took place in a well-equipped music room. The music therapists facilitated sessions by inviting the young people to contribute ideas about the music they liked to listen to and the instruments they wanted to play. In initial sessions the music therapists needed to facilitate warm-up games and provide examples of activities that the young people might choose from. However the young people were quick to introduce their own ideas about what, how, and when they would engage with particular activities. We played music games, improvised, wrote songs, listened to music, practiced and performed for each other on our instruments and worked on special projects such as a tribute to Nelson Mandala. Similarly the music therapists took part in discussions and, especially in early sessions, occasionally mediated negotiations to remind the more vocal participants that it was important to hear from others. However, the young people were increasingly able to independently and spontaneously speak up for themselves and for others. Our initial research questions (what is good, bad, hard, and easy about music?) promoted dialogue and mutual decision making about what we would do next, and how we would do it. Our discussions also broadened to include what is good, bad, hard, and easy about other issues such as the benefits and challenges of having visitors, especially reporters, in sessions; being in the university environment; and how the research should be disseminated (a concert, "book" launch, conference presentation).
The young people were involved in each aspect of the research process. With support, they were variously able to refine the research questions, obtain an amendment to the ethical approval, gather and analyse data, and disseminate results. Music sessions were videoed, and they were able to use the video data to support their reflections. Professional support staff that had not been at the music sessions watched the videos with them, stopped/replayed the recording when the young people asked them to, asked questions, and helped them record their reflections in their journals. The young people were also able to record thoughts on a video diary, or confidential Facebook page. During music sessions an interactive whiteboard was used to record spontaneous quotes, suggestions, or more formal brainstorming activities. Songs and other musical artefacts contributed further data. Eight young people also agreed to be interviewed. Further detail regarding methods can be found in the full report available at http://mro.massey.ac.nz/handle/10179/5458.
Findings
While we found that music and research can be "fun", we also noticed that music provoked and supported a range of emotions according to our circumstances. A number of important events highlighted the music group as a "safe place for people to express emotions", and "to come to know people." Most significantly, during the period of the research a young person, good friend of many in the group, passed away. Our grief was supported and eased as we listened to music from her home country, and sang, played, and danced to the songs she enjoyed.
We also found that music and research activities can be hard work. We noticed that we were developing listening skills, becoming more patient, showing respect for each other, learning how to negotiate, and taking more risks. Several of us learnt to play new instruments and mastered, for example, simple chords on piano or guitar, or rhythmic patterns on drums. When reflecting on this work we drew attention to the process of making mistakes, practising, and finally “getting it right”. Several of us provided examples of increasing independence. These attributes, along with the acknowledgement that music felt like a place where we belonged, where we were responsible for and looked after each other “like brothers and sisters” led to the emergence of a central theme “we were individuals but we worked as a team.”
A social justice approach to music therapy aims to support marginalised people to have access to a larger community and can provide a sense of equality (Vaillancourt, 2012). However, we were ambivalent about bringing others into the group or venturing further within the university environment. Early on in our process we accepted the saxophone tutor’s offer to come to play and talk to us, and were engaged with what he presented. We also agreed, after vetting her by interview, that an international music therapist who was visiting the university could join the group. Our decision to ask her questions before agreeing that she could stay was a powerful example of developing autonomy and sense of authority. Nevertheless we were considerably more interactive and relaxed when only the core group was present. We had developed strong group identity which we valued; and the associated sense of safety and security we had within our own group potentially contributed to reluctance to take risks with outsiders.
For example while some of the young people enjoyed being in the university environment they were taking their time to explore and to take advantage of some of the things that were on offer; and towards the end of the project, several who were keen to develop their music skills expressed concern about music making beyond the safety of the group.
(At university, I’ve been to) the music building, and sometimes we go to the library or the café. We went to the café a couple of times with the whole group. I think I could go by myself or with friends. I went to the library with friends mostly just to see what it was all about. We looked all around where the library is and stuff. (If I was coming longer) I would go to the library to read a book or study. (Tash, interview)
(In the future) it would be good to play with people rather than just getting piano lessons. … I never played the piano here at ACTIVE though, and I don’t know why. But I wouldn’t want to play it where other people can hear me, except at ACTIVE. (Janiece, Interview)
I can’t go to music lessons by myself - I would need you to come with me because I get a bit nervous. (Tess, Interview)
Outcome
The young people suggested a good life for them would include having the chance to play music with others or to have music lessons, in an on-going way. Without doubt, the research and music activities were highly valued and personally transforming for many of them. On the other hand our findings suggest that the comfort and familiarity of the music group was extremely important to the young people and their ability to function optimally, and they were variously ambivalent about whether or how they might move forward.
And so, in line with our aim for the findings of our research to influence ongoing programming at the organisational level, we recommended that a range of music programmes be offered to small groups or individuals to provide “support for musical independence.” Young people would have the opportunity to set their own goals, and to self-refer to a community music therapist/s who would organise and run music programmes as needed, but would connect the young people with community musicians, teachers and so forth, and work with those professionals, to ensure that the young people could access and transition to typical music services. The ultimate aim of all programmes would be for the young people to be able to engage in music making in the community without the support of the music therapist. As transitional music programmes they could be evaluated according to the young person’s subjective experience of increasing readiness for independent activity.
We also aimed to promote interaction with wider communities and to challenge stereotypic beliefs and attitudes. I have already suggested that the young people were relatively ambivalent about interacting with the wider university community. The oppressive communities that they have encountered, even in their relatively short lives are likely to have led the majority of them to believe their limitations are insurmountable, that they need to accept their "lot", or need considerable help to do the things they choose to do in life. They, like other young people with intellectual disability (Goodley, 1997), sometimes seemed "grateful", eager to please, and reluctant to take risks. They may have learnt that it is important to adapt, learn resilience, and make most of a difficult situation, rather than assert their right to develop opportunities and to choose their own lifestyles. Those who move from a typical socially determined role to engage in self-advocacy are moving into and creating unfamiliar territory, contravening the rules, challenging the dominant hegemony, and destabilising the foundations of society’s understanding of disability (Goodley, 1997).
On the other hand inequality and oppression, like disability, are social constructions which cannot be assumed (Harris, 2006). The experiences of individuals and the ways they make meaning making of those experiences are fundamental to the affirmative, or any social justice, approach. It was therefore important for the adults to understand that the young people’s reluctance to challenge a system could be the result of oppression (lack of opportunity, encouragement, or support) or simply a matter personal choice. An anti-oppressive approach can be about readying the environment, creating opportunities, and supporting people to take advantage of new experiences when they are ready to do so. The young people were able, in the context of their personal experience, to make their own decisions regarding the action they would take. Cameron (2008) suggests the affirmative model:
(Establishes the) right of people with impairments to be able to choose their own lifestyles and ways of getting things done. If this means wanting to be with other people with impairments, with people who share a knowledge of another way of being, rather than striving to join in with the often bland and predictable mainstream, then this must be recognised as a valid choice. (p. 25)
And, while the young people experienced limited "inclusion" or "integration" into university programmes in the political sense, they were able to receive dedicated support in the university environment which for some felt more equal, and led to a sense of pride. Moreover, in the ACTIVE project "difference" was treated as a political issue. The young people’s presence in the university environment created pressure for redistribution of university resources, and they were offered maximum learning and development opportunities – strategies that contribute to inclusion (Anastasiou & Kauffman, 2012).
Empowerment is evidenced when people take responsibility for how they participate; when they negotiate what they want to do and for how long, what changes they desire, and what products they create (Rickson & Skewes McFerran, 2014). The young people in the ACTIVE music group were able to engage with planning, organising and participating in regular music activities and research activities-- an online international tribute to Nelson Mandela, a concert, and a book launch-- with relative ease. Three of their group members are also excited to present their work on behalf of the group at an international music research conference, where their abstract was accepted following “blind” peer review. It is likely that these efforts will positively influence observers’ beliefs about and attitudes towards young people with intellectual disability.
Discussion
Philosophical differences in the ways disability is recognised and treated are profound and enduring, and the ways in which music therapists understand disability has significant implications for the ways support is provided.
For example, the medical, individual, or personal tragedy model, with its insinuations of vulnerability and dependency, can confine music therapy participants’ potential to develop self-determination and become autonomous. It can encourage acceptance of personal limitations, acknowledgement of fate, and adjustment to environments controlled by others. It can also reinforce the need for professional intervention and expertise. Like many other helping professionals music therapists can wield significant power, and those who are immersed in medical-model cultures and hold positions of authority can find themselves in a situation of indisputable contradiction because their identity is underpinned by their participants’ dependence. The argument that there are sometimes benefits to segregated "special" education is often upheld for example, because it is of value to teaching and therapy professionals. Music therapists should be aiming to work themselves out of a job by holding sustainability as a high value in any initiative they introduce (Goodley, 1997; Rickson & Skewes McFerran, 2014).
Social and affirmative models of disability are “intertwined with notions of emancipatory theory, research and action” (Goodley, 1997, p. 373). Music therapists can support music therapy participants, including young people with intellectual disabilities, to discard medical constructions of disability, and to focus on what they can do rather than what they can’t. “By challenging notions of impairment, inadequacy and limitation, [they can encourage] a context to be formed in which people can strive for self-expression, growth and determination” (Goodley, 1997, pp. 373-374). Music therapists and others who adhere to the affirmative model do not see disabled people as passive individuals limited by impairment; but as active participants engaged in a quest for self-determination, usually against difficult odds created by the societies in which they live. They embrace notions of individual and collective empowerment; and become advocates who charge communities with providing policies and programmes that meet the needs of all of its diverse members.
The facilitators of the ACTIVE music project aimed to develop a culture of inter-dependence which recognised that just as everybody has limitations whether they are considered to have a disability or not, everybody has something to contribute, and that mutual support is beneficial for everyone. Accepting that disability is not necessarily a problem of the individual, but a problem constructed by society in response to difference, did not mean ignoring the presence of vulnerability. Rather, it was understood that everyone has certain vulnerabilities that surface in particular situations (Beckett, 2013) and that when people are vulnerable they need to draw on the support of others with whom they have a positive relationship. Accepting intellectual disability as a valid difference authorises the claim that young people should be included as equals in a diverse society (Cameron, 2008). Throughout the ACTIVE project, adults needed to keep a balanced perspective of the young people’s abilities, experiences, and desires-- as well as their human rights. Diversity and equality both needed to be taken into account.
The affirmative model, building upon the social model, provides a framework for the personal understanding and address of the day-to-day interactions in which we are continuously engaged. (Cameron, 2008, p. 27)
The music group became a safe and secure environment where the young people could "speak out", using various forms of communication. They could do this because they had developed relationships with each other and with the adults involved which embodied the principles of respect, commitment, mutuality and empowerment. Noting Lynch’s (2013) argument that affective achievements such as love, care and solidarity are undervalued in the discussion of health and wellbeing, Rickson & Skewes McFerran (2014) contend that these principles of good relationships should be placed in the foreground of music therapy work which has a social justice agenda.
The complex process of learning to understand each other was enriching for the participants in the ACTIVE music project. The project was based on the premise that it is important to hear and respond to the voices of young people with intellectual disabilities; that they have a right to speak, and that non-disabled people need to hear what they have to say. Having to find ways that would help the young people to understand difficult concepts and eventually writing the report in plain English, was extremely valuable for the adults. We grappled with our own understanding of the concepts in order to convey important ideas for the young people even while acknowledging that some of the subtlety of meaning can be lost in an exercise like this. Similarly, having to find ways to communicate and contribute meaningful research data was challenging but inspiring for the young people. Ultimately they were able-- with a lot of hard work-- to communicate their desires and needs with surprising clarity.
Self-advocacy can be understood as a continually progressive and emancipatory activity. If we hold that impairment is not all important and unsurpassable, then people with learning difficulties’ self-determination can go far further than these constructs of inability will allow. Disabling society provides the biggest opposition to personal growth, but a context for self-advocacy means that people with learning difficulties can themselves challenge the very societal structures that stifle such growth on a number of levels. (Goodley, 1997, p. 374)
The affirmative model of disability, Participatory Action Research, and Anti-oppressive Music Therapy approaches all have the ultimate aim to give voice to marginalised people. It was tempting therefore for the adults working with the ACTIVE team to challenge the young people to give more than they were willing or able to. I was personally frequently torn between enjoying being with them in the moment, musicking with them, and helping them to understand themselves in the present; and helping them to find ways to plan for and shape their futures. We loved being together in the moment, talking and making music; and while we worked hard at aspects of that, it seemed that the research activities which involved reflecting on the work, generating and analysing data, and producing agreed findings was harder still. Just as the adults needed to take responsibility for guiding the young people to find their voice, they also needed to take responsibility for allowing them to do less, and to be less concerned. I was frequently reminded of E. B. White’s famous quote describing his dilemma of waking every morning “torn between a desire to save the world and an inclination to savour it”. White said, “If we forget to savour the world, what possible reason do we have for saving it? In a way, the savouring must come first”. There were times when it was best to savour the warmth, familiarity and nourishment of the music group, and to put aside the challenge of engaging with the not-so-savoury outside world.
The ACTIVE music project suggests affirmative constructs of disability, community and anti-oppressive music therapy approaches, and participatory action research methods have much to offer music therapists. Programmes for children and young people can be enhanced when participants are asked to consider what they want from their supporters; when they are involved as much as possible in choosing, setting up, and running programmes; when voluntary attendance at programmes is encouraged; and when the diverse and complex experiences and abilities of participants is recognised. They can be enhanced when the goal of independence is foregrounded, albeit while recognising that various levels of support will be required at different times; and when participants build relationships based on the principles of respect, commitment, mutuality and empowerment (Rickson & Skewes McFerran, 2014). But they will only be successful when adults consider how they use their own power to support young people in empowering activities; engage in on-going reflection about whether the programme is meeting the music therapist’s or young people’s needs; recognize that being in collaborative relationships with young people results in growth that is mutual and multidirectional; and withdraw from programmes as the young people develop increased levels of autonomy and self-advocacy skills. Recognising social difference involves a need to think differently (Cameron, 2008). Music therapists who are supporting children and young people with intellectual disabilities need to be open to unforeseen possibilities, and to engage in critical reflection on their own assumptions, biases, and actions.
Note
[1] It is generally considered best practice to use people-first language, such as “young people with intellectual disabilities” to promote the idea that the disability label should not define the whole individual. However some groups of disabled people consider their disabilities to be an important part of their identity, and feel that first-person language promotes the idea that disability is something negative which should be separated from who they are.
References
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