An Autoethnographic Journey in Developing Post-Ableist Music Therapy

4.2.1 Benevolent Ableism

There are different types of ableism that lead to disablism, “the discriminatory, oppressive, or abusive behaviour arising from the belief that people who do not have certain abilities are inferior to others” (Wolbring, 2009, p. 151). These are benevolent, internalised, systemic, and individual. Benevolent ableism is often subtle and occurs when well-meaning people who don’t intend to discriminate and intend to “help,” are misguided by their own assumptions about what a disabled person needs and wants (Cameron, 2009).

Well-intentioned therapists may attempt to normalise people with disabilities so that they will assimilate in social settings, rather than offering alternative positions. Benevolent ableism occurs when MT organisations promote services for disabled people without consulting those they deem to be helping. Another example is when feel-good stories are used in promotions that frame MT and/or the therapist as the hero in the story and the client’s disabilities are centralised. It occurs when condescending labels are used, such as differently-abled or special needs. Labels that are thought to make disability more palatable can instead be condescending and belittling.

4.2.2 Internalised Ableism

Internalised ableism occurs when negative understandings of disability are internalised and applied to the self. Not identifying as disabled due to negative associations, or not wanting to spend time with other disabled people for the fear of being associated as one of “them” may express this.¹⁷ Disabled people can often feel like a burden or undesirable as a result of internalised ableism.

Drawing on examples from my analysis, internalised ableism may also affect disabled therapists in the way of disclosure issues. Therapists may not identify as disabled in attempt to separate their role from that of the client. Internalised ableism may make a therapist view their disability negatively in relation to their practice, the maintenance of good practice being despite their disability instead of the possibility of good practice because of it.

4.2.3 Systemic and Institutional Ableism

Systemic and institutional ableism occur within our social structures that do not allow disabled people to participate. For example, they can occur within educational structures. My analysis highlighted that accommodations can often be very hard to negotiate, and fairness is regularly related back to the normative body. A form of institutional ableism is increased bureaucratic demands. There is endless paperwork for disabled people and bureaucracy around specialist wait time, services one can access, and educational accommodations. The effort of wading through the bureaucracy does not always result in support. Only some of the students I work with get adequate funding for accommodations and services.

Accessibility is one of the main issues. Music opportunities can be inaccessible due to non-disabled being presumed. The significant under-representation of musicians with disabilities in the popular music industry might be partially counteracted by making music accessible at an educational level (Challis, 2009). Therapy services can also be inaccessible due to cost.

4.2.4 Individual Ableism

Individual ableism is often experienced through many microaggressions that build up over time. The term microaggressions, Derald Wing Sue (2010) points out, was coined by African American psychiatrist Chester M. Pierce in 1970. At a later date, Sue (2010) explains microaggressions as “brief, everyday exchanges that send denigrating messages to certain individuals because of their group membership” (p. xvi). Microaggressions were originally described in terms of racism but have been extended to encompass other marginalised groups’ experiences by Sue (Sue, 2010; Sue & Sue, 2015). Hadley (2017) draws attention to microaggressions in MT practice in her important self-reflective chapter, which introduced me to reading the earlier literature cited above.

There are three major categories of microaggressions: microassaults, microinsults, and microinvalidations (Hadley, 2017; Sue & Sue, 2015). Microassaults are blatant intentional attacks of discrimination. Microinsults are comments or behaviours that unintentionally convey insensitivity or demean people. A microinsult example from my PhD analysis was the disregard of positive aspects of non-normative bodies and minds with statements like, “despite their disability.” Finally, microinvalidations are behaviours or comments that dismiss, exclude, or negate the disabled person’s experience, thoughts, and feelings (Sue & Sue, 2015). They include the erasure and trivialisation of disabled peoples’ experiences. Examples from my analysis include being told, “you don’t look disabled,” to just “have a positive mindset,” and “eat a vegan diet” to “overcome” disability. This erases the ability to express a wide range of uncomfortable or confronting emotions, as there can be social backlash for marginalised voices that describe the realness of disability and disabling microaggressions. Microaggressions are usually invisible to the perpetrator, unintentional and unconscious, allowing the power dynamic within interactions to be maintained (Hadley, 2017).

I will now give further vignettes from my practice that demonstrate how the creation of less disabling environments can be supported in MT processes through the remaining focus areas: The removal of ableist barriers, supporting moments of connection, finding new and less restrictive spaces, and the therapist critically questioning their frame of reference.

5.1.1 Devang

Devang spoke fast, tripping over his words. The beginnings and endings were sometimes missed: it was his way of speaking. One had to learn how to hear him. But even then, it was not always possible to decipher. He was referred to MT to learn the difference between fast and slow, in order to learn how to speak slowly and clearly. Devang loved to sing. I noticed that he was already aware of what fast and slow meant and that he could sing in a slow or fast manner, but his articulation of words wasn’t always clear regardless of pace. One day he asked if he could write his own song. While discussing what he would like his song to be about, I picked up on some of his ideas, but also missed much of what he was saying. I asked if he could speak slower, like the slow song we just sung. He attempted. He got frustrated. I suggested singing his ideas musically. He attempted. He got frustrated. I offered ways to support him in altering his voice so that he could communicate what he wanted. He attempted. He got frustrated. The songs we wrote were not entirely his words. I incorrectly at times had to fill in the parts I couldn’t understand. I was creating a barrier through the pursuit of verbal communication.

Understandably, he lost interest in songwriting after a few sessions. If I was working in neurorehabilitation some might say that he had lost motivation and became non-compliant in his voice work. Having witnessed the frustration he had experienced and the recognition of my role in this, I understood his need to say, “stuff it” and to take a break. Instead of trying to change his way of talking (reason for referral), I thought about how we could reduce the barriers that we faced in our communication. In talking with his speech and language therapist we offered Devang the use of touch chat (an iPad app) in his sessions. Through the use of technology, he was able to communicate what he wanted to say. During subsequent sessions he became an enthusiastic songwriter.

This is an example of supporting posthuman subjectivity by reducing barriers through our interdependence with non-human and human agents. Reducing the barriers of privileged normative speech to create a less disabling environment through valuing augmentative communication enabled Devang to be creative. This also engendered change in how school staff and students communicated with Devang. Touch chat was used in classroom groups and taken with Devang wherever he went.

Posthumanism was fundamental to this shift in approach as it countered the limitations of the humanistic ideal of independent communication––especially the privileging of normalised speech in the referral. It is interesting to note that MT critiques of humanism have not lessened its dominance in the way that critiques of the medical model have. Rolvsjord’s (2010) critique of the medical model is comprehensive and far reaching. However, unlike the comparatively small amount of critiques of humanism in the MT literature, medical model critiques have sparked great changes to be made to practice. Orientations, such as CoMT, field of play, and ROMT, have developed in response and reposition practice away from the medical model. Likewise, I wish to respond to the contention of humanism by repositioning my practice and developing more pluralistic foundations. Therefore, I cannot stay within current MT orientations here, even those which developed in response to medical model critiques noted above, as humanism remains a dominant framework in such contemporary practices, despite its critiques.¹⁸

5.1.2 Lucy

Lucy could play the piano well and wanted to play with others in her school community. However, she was unable to read music, which the chamber music group relied on as the main way of learning pieces. We therefore focused our sessions on aurally learning the music, so she could feel confident in playing the pieces and become a chamber music group member. At a later time, the group leader asked how she could support Lucy by adapting her teaching methods. I talked with her about how she could make the group accessible, resulting in Lucy requiring less support from MT sessions.

This is an example of removing ableist barriers so that the student can access music making within her community. The community chamber group changed in response. For example, they got better at playing by ear and breaking the music into sections when learning, supporting the post-humanist value of interconnection. PAMT supports disabled people in accessing music making, without it having to have a non-musical therapeutic goal. The primary focus of Lucy’s sessions was music making and ways to make this more accessible, not “the use of music to achieve non-musical goals.”¹⁹

This example demonstrates the importance of drawing on disability studies in PAMT, which is often underutilised or not fully embedded in other MT approaches. It is through such literature that I became more aware of the depth of societal and educational barriers disabled people face in accessing music making. While some MT approaches do give space for musical outcomes, despite some steps taken, there remains weak engagement between the fields, which Tsiris (2018) explores. Some connections did exist at the time I was writing my thesis (Gross, 2018; Hadley, 2014; Humpal, 2017; Metell & Stige, 2015; Tsiris, 2013), but for the most part I found the voices of disabled scholars/communities and/or acknowledgement of political disabled identities to be missing in key books and articles where they would be well placed. Key scholars of disability studies in music such as Straus, Rowden, Lubet, McKay, and Cameron are missing in many MT texts. One example is Aigen’s (2014) book, which readily discusses community, ecological and music-centered practices, but lacks a strong presence of scholars of disability studies in music and disabled communities and their identities, thus such approaches not being evidently formed by and with disabled voices. This is unfortunate given that such socio-cultural perspectives in MT have been presented as a way to bridge misunderstandings between disability studies and MT (Tsiris, 2018).

5.2.1 Lucas

Lucas used to watch the chimes move while other people played them. Sally, another group player, had just started working with Lucas and seemed unsure about what to do. She stated that she couldn’t sing and sat and watched the others. Her interaction with Lucas during the group was minimal. I suggested that she could hold the chimes so that Lucas could play them. The position in which she held them was not the right angle for Lucas’ movements. We worked together to find the best place for her to hold them. Lucas swung his hand to make them crash while squealing “eeeeee.” “That’s it Lucas,” Sally encouraged. The next session Sally offered Lucas the chimes. She also started squealing “eeeeee” at the same time Lucas did. Lucas laughed when she did this, and it became a game that whole group participated in.

This is an example of how the less able aspects of oneself are viewed as a powerful source of connection in PAMT and how interconnected we are. Lucas required someone close to hold/position the chimes, and Lucas’ different way of singing (“eeeee”) provided Sally another way to use her voice during the session that was less song-like and less intimidating. It was, what could be viewed as, the incompleteness of Lucas’ full range of movement and Sally’s limited voice confidence that allowed this specific moment of connection to take place. The role of the therapist was to support how they could effectively work and create together.

5.2.2 Patrice

Patrice had shown a keen interest in my violin. I found a child-sized violin for her to use in sessions and also play throughout the week during break times from the classroom. We would improvise around the open string notes that she would bow. Patrice wanted to see the music we had made together, so I emailed some video clips to her parents for her to watch. Her father emailed back saying that the videos meant a lot to their family as Patrice’s grandmother used to play the violin in orchestras. Her father contacted family to track down Patrice’s Grandmother’s old violin.²⁰ He shared how he had unearthed a lot about their family history from doing this. Patrice’s interest in the violin connected her with her family and engaged them in the process of discovering new possibilities for Patrice that situated her within stories of her ancestors, connecting with two aspects of Te Whare Tapa Whā²¹ in particular––whānau and wairua.

5.3.1 Hazel

Hazel’s music was off the beat, sliding between tones and keys as if to never rest anywhere. Free from form, key and beat, we played whatever, whenever, however, but always with a mischievous grin and always together. It made me think of a quote by Siebers:

This was a less restrictive space. I did not provide a beat for her to entrain to or settle in a key for her to come home to. I did not use the Iso principle. I came to the music without an agenda, then began to play, musician to musician (Kenny, 2015). Hazel did not have to conform to the Western form of musical composition that deems “some notes consonant and others dissonant; some rhythms as falling on the beat and others off it” (Howe & Jensen-Moulton, 2016, p. 526). She did not have to adhere to conformational practices that “dictate that one is either in tune or out of tune, blends with the ensemble or sticks out from it” (Howe & Jensen-Moulton, 2016, p. 526). We celebrated every note, there was no hierarchy here: A supported disability aesthetics where Siebers (2010) describes how “the systemic oppression of disabled people would fail, and fail precisely because it could no longer be based on human appearances, features, and conditions deemed inferior” (Bakan, 2016, p. 548). Disability aesthetics considers cultural ideas and ideals of satisfaction and beauty through the lens of non-normativity (Howe & Jensen-Moulton, 2016). By having an awareness of how music might enforce normalcy, I could understand how supporting Hazel’s way of making music might reverse its dominance: perhaps even offering a disabled identity a place. The disabled aesthetic did not express defect but rather it enlarged “our vision of human variation and difference” (Siebers, 2010, p. 3). Such aesthetics and beauty can provide new, less restrictive spaces.

MT can therefore support one in escaping the dissonance between internal and external experiences and enable a space that might help to repair some of the injury of the chronic experience of misfit: the incongruity between mind, body and environment (Garland-Thomson, 2011). I hope that Hazel got a sense of that––from her motivation to create music we may have been on a helpful track. For me, I felt more “at home” in this music space.

Like in other vignettes, I drew heavily on understandings in disability studies to inform my practice here. In particular, the central role of music in embodying and shaping disability and normality, which emerge in mutually influential and parallel ways (Howe et al., 2015). This is important because music was found to be a conduit of disability knowledge and control in my analysis. Disability studies offer a plethora of further examples of how music institutions may construct disabled identities/subjectivities and the potential idea that “most standard music theories are not only normalising discourses but also disabling discourses” (Straus, 2011, p. 105). It is from this point that I temper Gross’ (2018) view that music-centered MT is one example of a model that is sensitive to the social model of disability. It may be, but the primary focus on music does not automatically mean it is free from barriers or normalisation processes, which the social model draws attention to. I agree, however, that it may provide opportunities for mutuality if the therapist is aware of the power relationships in music making. Gross’ article is none the less important because it adds to the conversation between disability studies and MT and draws attention to another disability model. Therefore, my caution is not to reduce its application in practice, more so as a reminder of the depths of ableism that can be present across orientations. Accordingly, drawing on music-centered approaches alone could not meet my concerns around the ableism encountered within music making in my practice.

5.3.2 Penny

Penny’s teacher was concerned about what Penny would do after high school as she felt that Penny used her condition as an excuse to get involved in various things and focused on it too much in discussions. In MT she wanted to discuss the challenging aspects of pain (that was part of her condition), in between playing music––where she felt less pain for a short while. Penny felt silenced, “Nobody wants to understand, they don’t want to hear how tough it is,” she would say. Penny would request to sing, “Numb” by Linkin Park during these moments:

After these moments where Penny could tell me how it was for her, she would request to play free music together. She explained that during improvisations she did not notice the sensation of pain, it would “stop for a bit.” Penny’s sessions perhaps provided a less restrictive space from that of having to censor what she said about her pain as well as temporary relief from the restrictive sensations of pain. PAMT can address the ableism imbedded in the censoring of disabled voices to fit within social conventions that makes some conversations feel impossible. Many MT practices do support this well but it seems helpful to be explicit about the process.

It’s important to notice that where my approach did perhaps differ, is that I did not seek to ‘empower’ Penny. Rather than speaking of an essentialist freedom, Foucault understood freedom and power as co-existing as relations that are observable as “actions upon other actions” (Foucault, 1982, p. 789). Thus, addressing ableism is not to support “empowerment” for the people we work with, as power is not a thing that one can own. Power exists in relationships in which it can be resisted or engaged and consequently placing the question of who benefits under scrutiny in social justice work. This differs to many social justice orientations proposed in MT that seek to empower clients, such as in Baines (2013) and Curtis (2012). Foucault spoke of an “agonism” in which there is reciprocal incitation and struggle; which isn’t a confrontation that immobilises both sides but a productive permanent provocation of power (Foucault, 1982; Gordon, 1991). Agonism became an important aspect of the extended relational ethic in the development of PAMT. It was a generative site for personal transformation where my ethical care of the self was constructed through contestable and negotiated disability politics. In this vignette the discursive pair of music temporarily lessening pain (medical model of disability) and MT addressing the silencing of pain stories in social contexts (social model of disability), provided productive agonistic struggle within the therapeutic relationship.²³

5.4 Vignettes of Therapist Questioning Their Frame of Reference

The following vignettes place value on disruptions in my thinking. Examples include when I perceived things as going wrong, when uncertainty was present, a new thought appeared, or when things were troubling/messy. This links with how the posthuman subject disrupts our vision of the human and that such disruptions are valued in posthumanism. Disability disrupts in the way that posthumanism does; the presence of disability “disrupts, shakes up and interrogates the normative position […]. Disability inevitably disorientates normativity” (Goodley & Runswick-Cole, 2014, p. 4). The following vignettes also demonstrate the need for a heightened reflexivity. As Baines (2013) explains, reflexivity is a political activity, as it uses what we think, say, and do as the material for transformation (Allan, 2006).

5.4.1 Callum

Callum said he wanted to continue MT next year. He wrote in his report, “I’d like to play better than I already can. I would like to play the games better and it also brings friendship up from other people and it means others want to come and play with me, which is actually really rare.” Based on this, I continued to focus sessions around supporting relationships and social understanding.

During one session Callum showed an interest in writing a song on GarageBand. He struggled to work collaboratively with the other students as he had specific ideas about how he wanted it to sound. After the session, I asked him how he had found it. He said, “if I am working on my song, I do not want to bring anyone, because it makes it harder and they don’t recognise the beat that I want. They are not mind readers.” I initially thought, great he understands that they cannot possibly know exactly what he wants (which caused friction in prior sessions), but I felt that he still needed group sessions. I replied with, “Ok how about we alternate between one week with your friends and the other coming by yourself?” He responded, “No, how about the next month I come alone to work on my song.” My initial reaction was to think that he had ‘regressed’ and to continue to try and hold a space for the group work.

On reflection, I reframed this as a progression in him understanding and voicing his needs and the need for me to support his way of being. I recognised that he doesn’t have to like working with people all the time, and that he had voiced wanting to be alone sometimes. His way of being required more alone-time than my way of being. He came individually for the next five weeks and created a great piece of music he was happy with. The lyrics were:

He expressed, during this song, a better world “not held down by artificial weights.” Was I initially one of those weights? He shared this song with his friends in a subsequent session and it provided a tool for him to generate conversation.

As well as being an example of a disruption and shift in my thinking, it also exemplifies how our limitations can offer other possibilities: His new limits around group work were reframed as a possible site of growth in another area––musical development. This vignette demonstrates my struggle against trying to restore a normal self within a player who is not necessarily biologically configured in ways that will allow him to ever meet the requirements of being socially ‘normal,’ as these are currently constituted (Hodge, 2013). I shared my reflections and questions directly with him and within his notes, which parallels with the practice of narrative therapy.

5.4.2 Marcus

Marcus would get upset when having to leave the classroom on rainy days. At the time of working with him, I was grappling with moving away from humanism towards posthumanism. If I thought about his sessions with a humanistic framework, I considered how they supported his language and communication, in particular how it facilitated opportunities to practice speech clarity and increase verbal interactions (speech is venerated in humanistic thinking). I considered how I could support independence by providing a motivating activity for him to leave the classroom for, without being piggy-backed by me, so his feet didn’t touch the water. I saw how his autonomy, when it was raining, was facilitated through his control of the music. But ultimately, I felt that disability was seen as only a “lack” when we worked towards such humanistic qualities.

Later viewing our sessions from a posthuman perspective, I considered how sessions could support enabling connections with human (me) and non-human entities: Technology enabled an amplification of his voice through a microphone and an iPad provided an enhanced memory recall of the experience through video that we looked at after the music finished. His exploration of the weather and how to coexist with this non-human element enhanced a relational consciousness with his environment, which is important for survival and health. Thus, acknowledging the environmental human-nature relationship. Marcus was singing about his relationship with rain, sometimes liking it, sometimes unsure about it. I considered these moments of disruption as helpful, not as regression.

I felt that the posthuman reframing accepted his way of being. I could celebrate the interdependence of our music and more greatly appreciate that moments of anxiety around the rain were co-produced. For example, did we give Marcus enough time to fill his regulatory needs with self-calming behaviors on rainy days?

However, to situate this in an Aotearoa NZ education context, I was required to work within the key competencies of “managing self,” “participating and contributing,” “relating to others,” and “using language symbols and text” (Ministry of Education, 2019), which are currently based on humanistic thinking. There is a strong drive in the competencies towards independence and self-management. Therefore, I needed to reframe and rework the key competencies with a posthuman perspective.

Some MT authors have pushed the parameters of humanism and one may wonder why I couldn’t have just used these to frame my practice here. However, based on the findings of my research, the critical expansions of humanism proposed in the literature did not go far enough in addressing the power relations that create ableism. For example, Hadley and Thomas’ (2018) critical humanism did not address the human-nonhuman binary divide formed under humanism. The ontological divide between humans and non-humans has arguably been the deepest and most invisible hierarchy on which racist and sexist hierarchies, for example, have been grounded (Lennard & Wolfe, 2017). Ableism sustains this divide and therefore we cannot adequately address social injustice without addressing it.

Ansdell and Stige (2018) do acknowledge the hierarchy of being and gap between human beings and non-human entities in their posthuman critique of humansim. However, they were perhaps unwilling to fully allow posthumanism a foundational place in MT practice. Instead they strongly proposed an extended humanism as the future conceptual spine for MT and denied posthumanism a proper seat at the table, as it was considered too “radical” (p. 6–7). I do not see its inclusion as a foundation for practice to be radical or discontinuous, particularly in an Aotearoa, New Zealand context. One can find hints of posthumanism in anything that decenters the human in relation to the world, such as the strong presence, connection and appreciation of the interrelatedness with non-human entities/environments in indigenous theories of practice (Kenny, 2015) and Māori models of health (Hodgson, 2014). Some definitions of MT include the role of non-human entities within therapeutic relationships (Bruscia, 2014). Ansdell and Stige (2018) themselves acknowledge aspects of posthuman thought in ecological and cultural models of therapy. Given that some aspects are present in current practice, embracing posthumanism as another foundation for practice would not be radical but instead support and value such practices, whilst also going beyond the limitations of humanism, thus allowing stronger agonistic pluralism. The counter-discourse of posthumanism is needed, as addressing ableism is more complex than simply incorporating disability issues into existing dominant frameworks. No matter how much it is extended, humanism has historically been hostile to disabled people and therefore another forum is needed.

This vignette utilised posthumanism to address the humanocentrism that often creates boundaries around the human subject. It demonstrates that posthumanism is not just a mode of critique, it has much potential as a position from which to practice and in generating greater agonistic provocation when given a more prominent place in practice. While the idea of expanding humanism is not new to MT practice, it seems that no theorist has fully embraced posthumanism as an active foundation for MT practice (at the time of writing my thesis). My research takes that necessary step in claiming posthumanism as an important foundation of PAMT. This has not been about abandoning humanism but developing the ability to re-position and move between different paradigms when needed. It will further allow the appreciation of many ways of being.

5.4.3 Olive

I do not like to admit this, but I had become bored working with Olive. I initially thought her repetitive music choices were the reason. I reflected later that my boredom arose partly through frustration at what seemed to be a repetitive therapy process with little change. Like most Western therapy, mine is embedded within a culture of transformation narratives, such as the formative account of Dibs and play therapy (Axline, 1964). In such narratives children with ASD,²⁴ through therapeutic intervention, make miraculous breakthroughs into social and emotional normality (Fisher, 2007; Hodge, 2013). I was not experiencing such dramatic changes with Olive. Perhaps this made the sessions somewhat disappointing and less engaging for me personally? (Hodge, 2013). The problem of my boredom didn’t stem from Olive’s repetitive sameness but from larger social discourses and expectations.