Becoming Instruments of Change in an Ableist Society: How Music Therapy Researchers Can Hit the Rig

Being an informed clinician and researcher is not a linear process. One does not simply uncover their biases in one fell swoop and magically become informed or unbiased. Addressing issues of therapist self-awareness is a continuous process that impacts not only the clinician’s competence but also possible treatment outcomes for clients and published research (Sue & Sue, 2008). Clinician awareness is a crucial step to providing the best quality treatment and representing populations accurately in written research. This awareness is a multi-fold process and is very specific to populations.

In my area of research interest, I am studying how the therapeutic relationship is fostered through music therapy with clients with moderate to severe dementia. It is important to begin by noting the dominant narratives that pervade the American culture about the elderly and those with disabilities. Whether or not these are truths, there are notions that suggest that the deterioration of functioning produced by the progression of dementia is a disability. Yet it is important to stop and ask why this is viewed negatively in our culture and not simply as a difference in personal identity (Hadley, 2013). We must also ask ourselves what our expectations are of those with a disability. Do we believe these clients have the ability to accurately represent their desires and feelings? My personal experiences as a clinician in numerous care facilities has shown me that as the disease progresses and language functioning decreases, the client’s perspective is taken into account less and less by treatment teams. Decisions are made for clients and vocalizations and physical responses are seen typically as behaviors and not necessarily as a means to communicate. At what point do we assume as caretakers that these individuals who have once lead fulfilling and rich lives are incapable of communicating what they need and what they feel solely because language is lost?

I feel this is a systemic social issue demanding attention and change which can be produced by allying with those with dementia and their affected families and loved ones and producing research which relies on the strengths of those with dementia. In order to produce change in the perception of individuals with dementia, “problems need to be viewed in a sociopolitical and cultural context.” (Sajnani, 2011, p. 187). It is true that we live in an ableist society and we must begin to question why we give worth to those who can perform to a certain standard of functioning. This is at the heart of the research I wish to conduct: questioning why we place such emphasis on language as a means for communication when current research clearly outlines the various avenues for non-verbal human communication. This is a particularly important question in relation to how we as researchers conduct research, rely on self-report and effectively obtain consent for treatment from our clients (Knight, Roosa, & Umana Taylor, 2009). So what are the best approaches to addressing these issues?

There does not seem to be a clear-cut answer to the question of how to provide the most respect and accurate information for clients with dementia. However there are theoretical perspectives, which align with these ideals. In particular, feminist and critical race theories point to respect for the client through various avenues (Sajnani, 2011; Hadley, 2013). Integral to practices of respect for clients’ lived experience and respect for them as the authority of their treatment is transparency in the therapeutic relationship, a shared power in the relationship and an empowered framework for client development. In conjunction with ideas presented earlier in this paper about personal awareness, it is also critical that the therapist is transparent with the client about personal values and assumptions on both sides of the treatment process. Personally, when I work with clients with dementia they are always older than me. I feel having an egalitarian relationship with them and respect for their lived experience is crucial to building an effective relationship with them, although these ideas are easily translated over to other populations.

Lastly I believe it is of note to think not only of the client but also how they are perceived in their environment. In this case it is important to see how we live in an ableist society and how the general population views those with dementia or disability. We must also look at the systems at play, understanding that every place has a culture whether that be on a macro level such as the American culture or a micro level, working to understand the culture of institutions which treat these clients (Alyami, 2009). What are the dominant narratives of these treatment facilities? What is the dominant treatment model for these clients? How is quality of life assessed? All of these questions and more help to provide a means for interacting with treatment teams as well as clients in order to produce effective and long-lasting change.

I believe wholeheartedly that the question of how to give voice to those with dementia is an issue that needs addressing on a societal and organizational level. Giving voice and respect for the lived experiences of these clients requires non-traditional approaches to treatment and even research. By doing this we are also allowing our lenses to be expanded and for various populations to be more deeply understood.

References

Alyami, A. (2009). The integration of art therapy into physical rehabilitation in a Saudi

hospital. The Arts in Psychotherapy, 36, 282-288.

Hadley, S. (2013). Dominant narratives: Complicity and the need for vigilance in the

creative arts therapies. The Arts in Psychotherapy, 40, 373-381.

Knight, G., Roosa, M., & Umaña-Taylor, A. (2009). Ethical issues. In Studying ethnic

minority and economically disadvantaged populations: Methodological

challenges and best practices (pp. 3-28). Washington, D.C.: American

Psychological Association.

Knight, G., Roosa, M., & Umaña-Taylor, A. (2009). Introduction to studying ethnic

minority and economically disadvantaged populations. In Studying ethnic

minority and economically disadvantaged populations: Methodological

challenges and best practices (pp. 79-96). Washington, D.C.: American

Psychological Association.

Sajnani, N. (2012). Response/ability: Imagining a critical race feminist paradigm for

the creative arts therapies. The Arts in Psychotherapy, 39, 186-191.

Sue, D. & Sue, D.W. (2008). The multicultural journey to cultural competence: Personal narratives. In Counseling the culturally diverse: Theory and practice. (5th Ed.) (pp. 5-27). Hoboken, N.J.: John Wiley & Sons.

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