Stories such as this one had been rather rare in my music therapy practice with people with profound intellectual and multiple disabilities (PIMD). However, their importance lies in the fact that they helped me get a glimpse of the person who is often hidden from the outside world by an almost impenetrable communication barrier. Severe limitations in mental and physical functions create a state in which it is extremely difficult to understand a person with PIMD. This complicates the course of the music therapy process and from the very first moments of establishing contact with this group of people poses a challenge (Lee, 2014). The music therapist often finds themself in a vacuum-like space trying to capture any kind of signal that could point them in the right direction. However, working with music provides the therapist with a unique means through which it is possible to partially overcome some of above mentioned problems.

As human beings we have an inherent need to search for meaningful interactions. Psychotherapist Albert Pesso described these interactions as ‘shapes’ and ‘counter-shapes’ (Pesso, Pesso-Boyden & Vrtbovská, 2009). When analysing verbal interactions with people with PIMD it is evident that the core problem is their inability to offer responses that are meaningful to their communicative partner. Interaction is almost exclusively one-sided (coming from the therapist towards the person with severe multiple disabilities) with minimal reciprocity. Since such interactions are usually perceived as uncomfortable for the communication partners and since the therapists, even under these circumstances, have an intrinsic need to establish a fluent interactive stream they unconsciously start using various compensatory strategies (Figure 1). These strategies have repeatedly been observed during analyses of video recordings of interactions between the helping professionals and persons with PIMD (Kantor, 2013).

During verbal communication the compensatory mechanisms involve mainly making comments for the person with PIMD, also called parallel talking (Lechta, 1990). Following remarks made by a teacher towards a girl with PIMD may serve as an example:

The quality of an interaction that uses this strategy is determined by the person’s ability to empathetically understand the person with PIMD, their knowledge of the context of a given situation, and their ability to deal with their own feelings about perceived communicational failures. It is difficult to maintain such interactions over an extended period of time due to eventual lack of content.

Musical interaction, on the other hand, has specific and undeniable benefits. In musical interaction there can be high levels of synchronisation between the therapist and the person with PIMD which fosters the continuous reciprocal interaction over a longer period of time. Instead of concrete semantic themes that can hardly generate a prolonged communication, musical communication can be based on emotional content. Music assists in maintaining an interaction that uses various interaction patterns (Schumacher, Calvet, & Reimer, 2019). The silence that may occur when the music therapist gives space to the person with PIMD must not necessarily be perceived as uncomfortable since it weaves into the pattern of a developing musical form. Moreover, therapists may also react not only to non-verbal communication, e.g. the breathing rhythm (Pavlicevic, 2007), but may also reflect their own feelings and incorporate them into their improvisations as ideas for further course of the interaction (Figure 2). This technique that fosters the feeling of reciprocity and continuation has been mentioned in different forms in the music therapy literature.

Empathic improvisation, for example,

This process is circular, and its quality is influenced by the ability to observe, to achieve synchronisation, to correct time reactions, etc.

Figure 2

Incorporation of the therapist’s insights into the musical situation.

Although there is limited research in music therapy literature systematically exploring therapists’ self-reflections on interactions with people with PIMD (e.g. Lee, 2014; Lee & McFerran, 2012), the nature of such interactions is obvious in some case studies (Nordoff & Robbins, 2007; Wigram, 1991, etc.). Most musical interactions with people with PIMD revolve around care, getting attention, praise, showing respect, musical overcoming of strong emotions and experimenting with musical stimuli and reactions to them, as attested in interviews with music therapists (Kantor, Ludíková, & Drlíčková, 2016). This analysis of music therapists´ self-reflections suggested they intuitively perceived that an important goal of their intervention was to meet the psycho-social needs of these clients. That is, they wanted to address needs that are closely linked with interaction, belonging, understanding, respect, and appreciation. (Ayinde, 2013). On a similar note, Juyoung Lee (2014, p. 70) described the claims of her research participants: “Their roles are not only to provide joyful experience but also to explore and maximize the clients´ potential developments and to support their psychosocial needs.” This is a very important benefit of music therapy, as the research in people with PIMD informs us that the main issue concerning the interaction in everyday life is not defined by its quantity, but by a low level of bio-behaviour states of people with PIMD (Munde, Vlaskamp, Ruikssenaars, & Nakken, 2009) and by the quality of interaction that is not satisfying for the communication partners (Axelsson, Granlund & Wilder, 2013; Axelsson & Wilder, 2013).

Figure 4

Musical interaction is the key to saturating the deprived psycho-social needs in people with PIMD.

Some authors described the development of long-term relationships between music therapists and people with PIMD in terms of regular and consistent engagements, showing responsiveness and building familiar interaction routines (Lee, 2014; Drlíčková, 2015), in expressing needs for human intimacy, creative exploration, autonomy, and in creating attachment bonds (Agrotou, 1998), in two-side acceptance and increasing understanding for a client (Kantor, Ludíková, & Drlíčková, 2016), etc.

A few years ago, a research method had been developed for this purpose - video microanalysis guided by interpretative phenomenological analysis – that produced “a thick, rich, and unique description of a meaningful moment, which occurred between a music therapist and a client who has profound intellectual and multiple disabilities” (Lee & McFerran, 2014, p. 367). There is a need for further research in this area that will explain the hidden process of intersubjective communication between the client and the therapist in different stages of their relationship development. As shown in the introductory case there is a certain evolution happening under the surface of observable reactions and relationship is being strengthened on the part of the therapist as well as the person with PIMD. Unfortunately, it is very challenging to describe this evolution without clear communication and behavioural reactions from the client.

Another idea is that thanks to the establishment of a long-term relationship, professionals are able to gain a deeper understanding of the person with PIMD and to name their positive personality traits (Kantor, 2013). The theory of intersubjective communication offers a framework for explanation of how this understanding is gained (which the professionals usually are not able to explain). Research evidence (Kantor, 2013) shows that positive traits of people with PIMD are most often related to gratitude, strength, sensitivity, spontaneity, sincerity, authenticity, openness, curiosity, sense of accomplishment, enthusiasm in group activities, assertiveness, friendship, students having strong personalities (“students are themselves”), joyousness, sense of humour, emotional harmony, being content with little, having ever-good intentions, and the desire to learn and to gain independence.

This finding is significant in relation to the criticism that the process of evaluation and documentation sometimes receives, due to the fact that more often than not the portfolios of these persons are lists of deficits and negative statements (Betts, 2012). The pollution of therapeutic, pedagogic, and social professions by the medical paradigm had in the past led to seeing these persons through the distorted focus on their disabilities. In the 1960s it was still possible to encounter research that tried to prove that it is not possible for a family with a child with PIMD to have a happy life (Trapp & Farber, 1962). The studies were sometimes aimed at collecting evidence to segregate the persons into institutional care. Another impact of such studies, however, lay in the great stigmatisation of severe and profound functional disability. In the Central European setting the situation lasted much longer. It was not until the 1990s that a gradual normalisation of the living environment of this group of people had begun, had led to their participation in education, and to a progressive application of standards for the achievement of an adequate quality of social care.

A music therapist working with a person with PIMD needs to have knowledge of the course of the development of the society’s attitudes towards this group of people in order to understand the social context of intervention. Their important goal is to bring information into the teamwork that are related to the personality, potential, competencies, abilities, and other positive characteristics of people with PIMD. Based on authentic statements of music therapists it maybe said that music therapy experiences enable people with PIMD to be seen as people with unique personalities and concrete traits, rather than characterised by their disabilities. Of course, music is mainly a means in this process, although essential. The music itself must be supported by the personal and therapeutic maturity of the therapists.

That the continuous, attuned and mutually fitting musical interactions can support a long-term relationship development may be one of the arguments for the important role of music therapists in interdisciplinary teams, especially in schools and social care services. Music therapists may be a key person to bring unique set of information about the person with PIMD due to a deep intersubjective experience. This concerns especially information about positive personality traits and competencies that are important for social inclusion of these persons and perceiving them as valuable human beings.

Furthermore, my aim in this article is to increase the hopes of therapists working with this population. The stories of people with PIMD often miss a happy ending and results of therapy may be transitory or hard to observe although the intervention is long-term. As music therapists working with this group of people, we need, therefore, to acquire an unflinching faith in the potential of musical interaction and the reciprocity of human relationship. We need a strong belief that repeated musical interactions are not lost behind the mask of disability and they do support the well-being of our clients. Without these, music therapy cannot contribute to so longed-for inclusion trends that are, in the case of many people with PIMD, still more a fiction than reality.

Dr. Jiří Kantor is a music therapists and special teacher with more than 10 years experience with persons with PIMD and their families. Nowadays, he is responsible for MA in music therapy at Faculty of Education, Palacký University in Olomouc and co-responsible for the activities of mentee centre from Palacký University affiliated to JBI Centre of Excellence at Masaryk University in Brno. His research activities focus mainly on vibroacoustic treatment, arts therapies in schools, music therapy and special needs.