The great reveal:

Disability and language

Both identity-first language, “disabled person” and person-first language “person with a disability” has been utilised throughout this research. As the research participant’s preferred label risks identification, the participant has chosen person-first language to be adopted in describing their experience. Language within the disability community is an individual preference, with some choosing identity-first language such as “disabled” or “autistic person” and others prefer person-first language such as “person with a disability” (Dunn & Andrews, 2015). I have chosen to use the term “participant” to describe the people we work alongside, favouring this term over “client,” “patient,” or “consumer”.

Who are music therapists?

The way one views the world and makes meaning of everyday phenomena is through lived experiences which form our values, beliefs and attitudes (Wheeler & Baker, 2010). These lived experiences are often culturally prescribed, inherited from our families and communities, and construct the foundations of our identities (Cote & Levine, 2002). Warren and Rickson (2016), suggested that the professional identity of music therapists in New Zealand consist of an interaction between these multiple elements in an on-going nature throughout one’s career. Therefore, for a disabled person, the on-going and often-evolving relationship with one’s disability is an imperative part of how we create meaning in our daily lives (Lerner & Straus, 2006) and imaginably as a music therapist, how we create meaning in music therapy practice.

It is widely recognised that music therapists occupy a reasonable level of privilege in their ability to access higher education and become registered or certified in our profession (Hadley, 2013). In Australia, the Australian Music Therapy Association’s (AMTA) 2016 Workforce Census Report did not include any questions about disability or other intersectional identity markers amongst the professionals registered with the Association.

Hadley (2013) suggested music therapists apply a critical lens of reflexivity to their individual background, to become aware of how positions of power can communicate through practice. Examining the self in this way may support safer practice and avoid reinforcing the marginalisation of oppressed social groups. This is a principle of anti-oppressive practice, that is, a practice which addresses the breadth of oppression and works from a participatory approach towards social justice and change (Baines, 2013; Hadley, 2013). Hadley and Thomas (2018) continued to suggest that music therapists should consider firstly, how they relate to the person with whom they work and secondly, how they relate to the socio-cultural groups with whom the person identifies. This is compelling when considering a music therapist’s relationship with a person with whom they share an identity, such as disability. This concept is congruent with being an “insider,” referring to someone with lived experience of the phenomenon or groups that they work alongside (Liudmila & Lejla, 2014). Luidmila and Lejla (2014), described advantages and disadvantages of being an “insider” as a researcher. They argued that whilst insiders may carry biases and assumptions about their shared social group, they possess intrinsic and embodied understanding of the shared phenomena.

Conceptualising disability

Disabled people have historically experienced and continue to experience discrimination, oppression, and are susceptible to higher instances of abuse (Hollomotz, 2012). Disability has been chronicled in Greek classical times through accounts of children born with physical and/or intellectual disabilities being subject to isolation, abandonment, segregation, institutionalisation, and infanticide (Laes, Goodey, & Rose, 2013). Further dominant historical narratives have framed disability as a repercussion of religious sin carried out by parents or the disabled individual, or as an intervention of the supernatural (Snyder & Mitchell, 2001). Other scholars portray disabled people in historical accounts of bravery, resistance and activism (Draycott, 2019; Shakespeare, 2018). All these historical portrayals of disabled people can be framed as problematic if considered through a feminist lens, as they are most commonly penned by privileged, non-disabled men (Draycott, 2019). A feminist lens favours accounts of lived experiences of actual disabled people in ancient times.

Defining disability is a contended issue with disabled people, activists, and scholars divided in their opinions (Gross, 2018). Over the last 50 years, several “models” of disability have emerged which conceptualise its definition in contrasting ways, with the medical and social models being the most prominent (Haegele & Hodge, 2016). This historical oppression firmly anchored disability within the medical model, a model viewing disability as an abnormal and pathological phenomenon requiring medical interventions and the pursuit of cure (Haegele & Hodge, 2016). Medical and therapy interventions, advances, technologies, and cure for some disabled people have afforded greater quality of life and extended life span. Additionally, labelling disability brings access to health and welfare services (Linton, Mello, & O’Neill, 1995). However, critiques of the medical model argue that viewing disabled bodies as abnormal and the interventions that may follow, endeavour to normalise our bodies and minds (Shyman, 2016). This notion of normalisation gives power to non-disabled people within society and contributes to further oppression of disabled people (Haegele & Hodge, 2016). Furthermore, it is argued that medical objectification of disabled bodies reduces a person to an object and can be harmful to our mental health, contributing to structural oppression (Kafer, 2013).

Critical disability studies and studies in ableism have long detached from the medical model, and instead conceptualise disability as a social construct. The social model views disability as a consequence of societal oppression, implicating environmental, social, and attitudinal barriers as the disabling factors, rather than one’s body or mind (Fitzpatrick & River, 2018; Gross, 2018; Haegele & Hodge, 2016; Riddle, 2013). The social model helps to illuminate the way that the medical model positions people with disabilities as problems to be fixed. The social model therefore highlights the everyday ableism that many consider has been deeply internalised within contemporary society (Gross, 2018). This re-framing of disability views bodily diversity as something to be celebrated and “claimed” within one’s identity (Kafer, 2013). Critiques of the social model have stated that whilst the model addresses body diversity (Haegele & Hodge, 2016), its political and ideological focus fails to acknowledge that diagnoses can support agency through offering practical access solutions in our everyday lives; for example, employing a support worker or the use of assistive technology (Bell, 2017). Further commentary alleges that intersections of marginalization such as gender (and non-conforming), ethnicity, and socio-economic backgrounds are unaccounted for in the social model (Campbell, 2009).

Ableism is the discrimination towards disabled people in favour of non-disabled people (Shyman, 2016). Ableism can manifest on a smaller scale, such as people’s assumptions, attitudes, or stereotypes and on a greater scale such as segregation and systemic oppression (Campbell, 2009). Disabled people internalise these ableist messages we receive throughout our lives that our bodies/minds are less than, that disability is a negative experience, and this results in internalized ableism (Campbell, 2009). Further theories in disability studies include Crip theory, which seeks to reframe the historically offensive word “cripple,” making claim and celebrating one’s “Crip” or disabled aspects of our identity (McCruer, 2006). Crip theory represents all disabled people, eliminating disability hierarchies. It is an inclusive term and through the lens of queer and feminist theory, aims to extend inclusion to diverse groups within the disability community such as disabled First Nations people, People of Colour and Lesbian, Gay, Bisexual, Transgender, Queer, Intersex and Allies +(LGBTQIA+, Kafer, 2013). To identify as “Crip” is to celebrate disability pride, which disrupts internalised ableism and societal narratives that our lives are unlivable, and our bodies/minds are undesirable. It celebrates difference and positions disability as part of the human condition (Clare, 2017). It is important to note that the social model, Crip theory, critical disability studies, and studies in ableism have been developed and led by self-identified disabled people.

Many in the disability community state the importance of individual medical diagnoses in claiming one’s identity, particularly in connecting to sub-communities that relate to diagnoses (Clare, 2017). The wider disability community is made up of people who self-identify as having: physical or mobility disabilities, acquired brain injury, intellectual or learning disability, are blind or have partial vision, are Autistic, are Deaf/deaf or hard of hearing, are chronically ill, are living with chronic mental health, are amputees or have limb differences, are people with facial differences, and people living with degenerative conditions. So, whilst diagnoses are not the problem, according to the social model, they are still an important part of our identities. For example, the d/Deaf and neuro-diverse communities often align with the disability community. I feel it is important to describe these communities in order to illustrate the spectrum of disability and exemplify shared barriers. The uncapitalised “d” in deaf represents people who are hard-of-hearing and have been medically diagnosed with mild to moderate hearing loss, often using verbal language and hearing devices/technology to communicate (Senghas & Monaghan, 2002). Whereas the capitalised “D” in Deaf represent a community with a strong and proud culture, whom are often profoundly deaf and primarily communicate with sign-language (Radić-Šestić, Ostojić, & Đoković, 2015). Some in the Deaf community reject the term disability, whilst some align themselves with the disability community for solidarity on shared issues (Senghas & Monaghan, 2002). The neurodiversity movement typically consists of people diagnosed with autism in addition to people with other cognitive and neurological conditions. The Autistic and neurodiversity community strive to shift the focus towards acceptance of diversity and the advantages of their difference (Grandin & Panek, 2013).

In addition to these communities, people with chronic illnesses – an umbrella description for a myriad of illnesses – and chronic mental illnesses, may also identify as disabled (Bassler, 2014; McCruer, 2006). These disabilities are often described as invisible or hidden as they may not be seen in the public eye (Bassler, 2014; Yeh, Jewell, & Thomas, 2017), yet individuals often encounter the same societal barriers as people with more visible disabilities (Kafer, 2013).

The music of disability

With these models and theories in mind, how does a music therapist navigate this complex terrain of disability? Cameron (2014), controversially suggested that the music therapy profession’s traditional alliance with the medical model is problematic and may reinforce oppression of disabled people. In the last decade of music therapy discourse, we have seen a detachment from the medical model and a move towards inclusive approaches. These approaches include resource oriented music therapy which focuses on nurturing people’s strengths and inner resources (Rolvsjord, 2010) and community music therapy which works from a participatory framework emphasising collaboration (Stige & Aarø, 2012). Both approaches reject pathologizing disability or illness and have been widely embraced by the music therapy community (Tsiris, 2013).

Lubet (2011) proposed that western music can be disabling, and Lerner and Straus (2006) suggested that this is due to the alignment of western music theory with the medical model, encouraging listeners to determine abnormal and normal musical structures and harmony. Lerner and Straus (2006) further hypothesised that non-normative bodies and minds experience music differently due to the diversity of cognitive, psychological, sensory, and physiological differences in our embodiment of music labelled “disablist hearing.” Churchill (2015), a hard-of-hearing musician, described the connection between power and listening and how the ability to hear is viewed through a medical model lens as laden with privilege.

Music therapists with disabilities

At the time of commencing this research, there was no known available literature exploring the professional experience of disabled music therapists. Since then, a PhD dissertation has been published, Developing post-ableist music therapy: An autoethnography exploring the counterpoint of a therapist experiencing illness/disability (Shaw, 2019). In this significant body of work, Shaw (2019) shared her autoethnographic exploration of acquiring illness/disability and it’s impacts on her music therapy practice using arts-based research methods in the form of expressive writing, poetry, photographs, images, and music improvisations. During this process, Shaw (2019) developed a post-ableist music therapy framework, which draws on multiple disability definitions and models and is defined as:

Shaw (2019), illustrated this model through vignettes from her music therapy practice.

In addition to this, in the medical memoir, Trauma, Disability and the “Wounded Healer, Abbott (2018) self-identified with the concept of the “wounded healer,” a term created by Carl Jung. Abbott proposed that disabled therapists or therapists with history of trauma, have unique qualities and vulnerabilities which can enhance their practice.

Recruitment

Purposive sampling was utilised to capture lived experiences and portray authentic voices within the data. The criteria included RMT’s registered with the AMTA who self-identified as having a disability. The recruitment process consisted of an advertisement in the AMTA email e-bulletin which ran for two weeks, in addition to the professor of music therapy emailing colleagues across Australia. One participant was recruited through a known source and after email discussions of the project content they agreed to participate, arranging an interview. The participant was emailed the plain language statement and consent form prior to the interview for review.

Data generation

A semi-structured interview was conducted over a one-hour duration with the participant at their place of work. The consent form was signed and dated, and verbal consent was also given within the recorded interview. The interview was recorded on two devices, an iPad and iPhone and transcribed using the software Transcribe. The interview questions consisted of work history and motivations to study music therapy, perceived barriers to employment, influence of disability on theoretical orientation and populations and disclosure of disability to employers and clients. The semi-structured interview format allowed for flexibility of any conversation points which arose, aligning with the flexible boundaries of arts-based research (Viega, 2016a).

I initially planned to offer the option of holding focus groups with several participants sharing experiences together, however, due to lack of participants, the only option was to have an individual interview, which the participant was comfortable with. It is acknowledged that the student-researcher and participant have a professional relationship which brought some level of power dynamic. I have great respect for the participant and noticed I was gentle in my interview approach, and this relational aspect also brought a deep sense of responsibility to convey their experiences accurately.

In my original proposal, I had hoped to close the focus groups with a short group musical improvisation to capture any final essences of the conversation and add an alternative means of expression. I had also intended to analyse the audio nature of each participants voice and consider central pitch ranges, intonation, quality, and rhythmic elements to be interpreted through short musical compositions around the themes. However, as there was one participant, I felt both the improvisation and capturing vocal qualities was perhaps too intimate and exposing. I asked the participant if they would be comfortable if I instead created compositions devised from the themes. This ability to change course fitted within the generous and malleable boundaries of arts-based research (Viega & Forinash, 2016).

I absorbed myself with the data by listening to the interview several times whilst reading the manual transcript and taking physical notes. I highlighted words and concepts that reoccurred or I found interesting. I made notes and found that I needed to question my own interpretations to ensure I was not creating themes that were congruent with my own values and experiences. I found it useful to journal and write simple poetry to process my own experiences that felt close to the participant’s. Over a period of four weeks, I identified six themes using this process.

I created five “tiny songs,” short musical compositions representing each theme or grouped theme. As described, I was very conscious of my internal feelings and dialogue when I listened to the audio and explored these themes. I tried to capture these feelings in the musical elements – tempo, rhythm, melody, dynamics, qualities, and contours – of each of the tiny songs, whilst also corresponding to each theme. It felt authentic at the time, to use voice and hand clapping only, as an instinctive means to represent the bodily nature of disability. However, in retrospect, assistive devices, aids, and technology are often a big part of the disability experience, including my own bionic implant. The creation of the songs formed part of the analysis process. Through the embodiment and play in the creation of tiny songs, I felt I was able to deepen my understanding of each theme and in my mind, gave life to each theme through the tiny songs. Each tiny song shared a central melody line and key which threaded the themes in a sequential manner, however the musical elements within each tiny song change to suit the theme and feelings. The tiny songs are presented in the results below.

Central theme: Hidden disability

The concept of Hidden disability was a compelling central theme, where the participant described a “dual experience” of living with disability, yet often viewed by society as able-bodied. This concept of experiencing hidden disability has been termed “passing” and can be seen as a level of privilege over those with visible disabilities (Clare, 2017). It was also discussed that society often assumes that one is able-bodied if they do not a have visible disability. A subsequent notion within this theme was not feeling “disabled enough” in some settings and on the opposite spectrum, feeling “too disabled” in other contexts. In their workplaces, people with hidden disabilities have reported to utilise this concept of passing, concealing their disability to their advantage yet many feel the burden of keeping a secret and may not receive necessary accommodations (Lyons, Volpone, Wessel, & Alonso, 2017). The term “hidden disability” was used at the time by the participant and this term is sometimes used interchangeably with “invisible disability” in disability studies literature and disability community. However, the words hidden and invisible are quite different, with hidden perhaps capturing the notion of disability needing to be hidden due to shame and stigma, whereas invisible may be more neutral.

In creation of the tiny song, I explicitly placed the word disability within the song several times to illustrate to the listener that it is not a phenomenon which is undesirable or to be avoided.

Implications

The most important implications from these results relate to the concept of visibility and representation. It is imperative we promote the fact that music therapy is a diverse profession. We can achieve this in part by centring the diverse voices among us that do exist and include these voices in all aspects of dialogue about us and between us. If we are visible in our communities and professions it can help to challenge ableist notions that seem to imply that therapists are always “perfect” or “healthy” (Campbell, 2009). These results align well with disability studies literature which highlight the importance of disability representation across all health professions, in order to support practices which are anti-oppressive.

This work also highlights the value of lived experience and how it can positively inform a therapeutic relationship through collaboration and authenticity. Yet it must be questioned, if we do not feel comfortable or safe disclosing lived experience of disability, how do we encourage visibility and inclusion in our profession? Furthermore, if we as disabled music therapists do not disclose hidden disabilities, are we complicit in silencing and reinforcing the oppression of disabled participants we work alongside? Despite a broad reach, only one research participant made contact and was subsequently interviewed. This poses further questions: Disabled music therapists, where are you? How do we create safe environments in order to have the opportunity to disclosure? Perhaps focusing on and normalising access needs of disabled music therapists is one way of creating safer spaces? Whilst there was a limitation of one participant, this is hopefully a rich description of their unique experience which also highlights the individuality of disability. Personally, I found this research offered me opportunities for self-growth and insight into my own experiences, as well how to approach my transition into the workforce as a disabled music therapist. I feel encouraged and excited to connect with other music therapists who identify with the disability community and explore further ideas and opinions.