Just because I can’t say words,doesn’t mean I can’t have a choice

Introduction

As mammals, using our voice and communicating our needs is a primal and instinctive skill we develop from birth. Although this developmentally progresses us to use our native language, first through sounds which then develop into words, this transition is not always an easy journey, due to a multitude of physical, cognitive or psychological reasons. People with disabilities are often stigmatised and viewed as less intelligent due to their inability to express their wants and needs as others do. I however find this shocking, as much of our communication comes from non-verbal (NV) means (Phutela, 2015). This article aims to explore some of my own experiences with verbal communication, along with case studies with two clients who I worked non-verbally with using Dramatherapy. Please note that pseudonyms will be used for the clients discussed.

A combination of autoethnological and case study methodologies will be used within this article to discuss the subject matter. Autoethnography is a qualitative methodology that uses a reflective means where the practitioner embeds themselves among the theory and practice. Comparing with the ‘cultural other’ (Plummer, 2001), it aims to establish validity on trustworthiness and authenticity. Plummer (2001) discusses how validity is whether the story is coherent and true, therefore this article will also be supported by using case studies.

Use of different senses

As humans we use all our senses to understand the world, however when one or more of our senses are not working this creates a need to become more reliant on the other ones. In Pagliano’s (2012) guidebook on the multi-sensory work with people with learning disabilities, he highlights the individual and unique sensory profile of each person, with some senses being naturally more effective than others. This is very common when one or more senses are not able to fully function due to neurological or physical disability, and the other senses needing to compensate. From an autoethnological perspective, I experience the world through a hypersensitive lens and can often become overwhelmed by unexpected or uncontrolled sensory stimuli, which can be considered part of the neurodiverse spectrum (Armstrong, 2015). However, this also has a flip side, where I can be sensory seeking, and really enjoy sensory experiences. With this personal experience in mind, I am very considered when working with this client group to not overlook these potential sensitivities, as well as fully embracing all the different levels of a sensory experience.

I find the use of my therapeutic role a safety barrier in preventing becoming overwhelmed by this sensitivity. I also ensure that I feel grounded and secure in the therapeutic space before work takes place, much like we do for the clients. My role as the therapist develops as trust is formed with the clients and unexpected elements, such as sound, can be explored in a playful space. My neurodiversity means that I approach aims and aspects from alternative angles, considering things that others may not perceive. I also find it enhances my creativity and ability to think on my feet.

Case study: Anna

Anna was 5-year-old and partially blind. In my initial assessment, it was noted from Anna’s parents that she experienced uncertainty around specific touch-based items. Therefore, I started my work with Anna by exploring her sensory profile: the framework which reflects our receptivity of the senses (such as touch, sound, movement, texture, taste and smell). Tolerance is different in each person, and we all respond from low to high thresholds in relation to everyday sensory information. Like a lot of things this is based on a spectrum, and can vary in relation to specificities. For example, types of smells, location of body and pressure of the touch (Pagliano, 2012).

In relation to touch I contracted safe touch within our sessions by stating in advance what I was going to do. Along with this I started small, touching her hand softly while speaking to her and familiarising her with my voice and presence. While this naturally builds up contact so does the experience of safety. I found over time that Anna would want to hold my hand, or even just have her hand pressing against my leg to acknowledge and feel my presence. As the therapeutic relationship developed, we were able to advance; touching the nose and cheeks, which was done in stages that were built in alongside use of textures and other stimuli. Also having clear communication tools for Anna was essential for when she wanted more or less contact. This included the use of sound buttons (a communication aide), along with recognising her cues through movement, NV sounds, and facial expressions.

Through this process, I identified that Anna enjoyed her face being touched by a variety of different materials, which was a major breakthrough and opened a gateway for new forms to explore our working relationship. Anna developed her communication through NV sounds, which she did not use previously, to express where she wanted the materials on specific areas of her face, as well as if she wanted more.

NV conversations

Hall et al. (2019) define non-verbal communication (NVC) ‘. . . as behaviour of the face, body, or voice minus the linguistic content, in other words, everything but the words’ (p. 272). NVC accounts for approximately 70% of our interpersonal interaction (Hall, 1985), so I find it interesting that so much importance is placed on the verbal aspects. This was seen with the recent coronavirus disease-19 pandemic, where face-masks were worn, and people experienced how the impact of not seeing someone’s face affected communication style and understanding.

In my experience of working with NV clients, a key part of connecting on this level is being in touch with your own NV forms of communication. Part of this journey is tapping into the ‘inner child’, being free to be playful, and reconnecting with the NV stages of one’s own development. Alongside this, techniques such as cross-modal attunement and mirroring are important methods to develop the client and therapist relationship and communication style, especially with people with profound, multiple learning disabilities (Pearson, 1996).

Ironically, I find this part difficult to ‘talk’ or write about. For a short period of time, I had selective mutism as a child and felt that my voice was not heard. Being mute was also a way to psychologically protect myself, but in the long term it had knock-on effects on my ability to self-express.

I find making ‘funny’ noises, sounds and expressing myself through NV comes from a very natural, playful and almost ‘childlike’ part of myself. Through my clinical work, I find the use of pitch and tone very interesting to experiment with, especially in terms of projected play and imaginative character formations (Cassidy et al., 2014). However, in Western culture, emphasis is placed on verbal communication and society appears to find NV sounds uncomfortable and strange, creating a feeling of shame and judgement. Feelings of embarrassment and ‘not being good enough’ are often internalised within this client group.

Creating space

There is not a lot of space for this client group within our society, which is why it is so important to create it within the micro-world or ‘therapy world’. In Jungian theory, this client group can be seen as the ‘other’ or the ‘shadow’ part of the self (Deardorff, 2009). Also, Jung’s theory can be found in the collective unconscious of society, where society can hold shadow aspects towards this client group. Therefore, this lack of acknowledgement or space can impact on both an unconscious and conscious level (Deardorff, 2009).

Part of the individualisation process is to accept all the parts of the self, including those that we do not want to acknowledge. An integral part of this is being open and curious about these ‘shadow’ or ‘other’ aspects. This in parallel is found within the therapeutic work when applying transaction analysis (TA) theory. TA theory informs us of three ego states: child, parent and adult. Being curious together and connecting with playful parts within the child ego state is key to communicating and meeting on a deeper level (Clarkson, 2003). This is a therapeutic relationship on a feeling basis and on a NV level. Therefore, connecting to those pre-verbal stages of development and having a relationship with our inner child is a vital part of the work as the therapist. Part of this has been for myself to work through the difficulties and reasons behind my selective mutism as a child, giving my inner child the space, it required. Through TA theory, this has allowed my now adult ego self to consider the child ego state more in situations and interactions, and, in turn, change patterns which were dominantly parent ego state (Harris, 2012).

An example in the therapy work setting would be a sensory session with Anna, where I brought a ‘space blanket’, which is a large foil blanket used in sensory play. In the session we had the blanket across us, and Anna was able to feel it on different parts of her body, as well as notice the differences in light, as she is partially blind. From an autoethnological perspective, I reconnected to my child self being underneath my duvet, playing imaginative games such as ‘camping’ and reading my novels. This foil was a silver colour that reminded me of astronauts. Anna began lifting her head and legs to push against the blanket in delight, which was observed by her laughter and smiles. Using my intuition and connecting with the inner child, we created a sense of being in a spaceship, which was preparing for lift off. We both began to move the blanket together, shaking it from side to side, hearing the rustling of the foil and feeling it against our skin. I then began a countdown, changing my tone of voice to a lower and more dramatic style: ‘5 . . . 4 . . . 3 . . . 2 . . . 1 . . . LIFT OFF’. We both then pushed very hard, and the blanket went flying above us, with light shooting in and the feeling of air rushing around us. Passalacqua (1995) highlights the importance of voice work in Dramatherapy in thoughts, emotions and sensory information, as a key part of working with a client such as Anna who has limited sight.

This example highlights listening to the client through these different levels of connection and communication. This was achieved by giving the client space to communicate, through movement, NV sounds and facial expression, as well as giving space for the therapist’s own inner child to connect with the client’s. This is from having a shared experience in the moment, as well as sharing other past experiences, on a more NV, unconscious level: creating a unique and intuitive response. Anna could not tell me what she wanted in that moment through verbal words, however she could tell me through so many other avenues. Her NVC was clear, and in that experience gave me more quality communication than simple verbal words. It is therefore interesting that society views verbal words to be the dominant and most relied on form of stating our wants and needs. Due to this bias, clients like Anna are often not considered in choice making decisions. However, as this example highlights, Anna has a lot of things to say and is more than capable of showing her wants: she just requires the opportunities and space to do so.

This repeated transaction is part of the therapeutic aims, giving the choices and allowing the space. This, in turn, grows confidence, develops abilities both cognitively and physically, as well as boost mental wellbeing (Horowitz, 2012). This is demonstrated in further sessions where with a sensory object and enough space, when asked ‘Can you show me where you want the ball?’, Anna is confident in her abilities and trust in our NV relationship that I can understand and provide space patiently for that feedback.

Connecting the body and mind

The complex, yet essential, relationship between the body and the mind was highlighted to me when I began working with Frank (then age 6 years old). Like Anna, Frank is diagnosed with dyskinetic cerebral palsy, which exhibits symptoms including involuntary dystonic episodes. When muscle movement is out of our control, it can be harder to communicate. This was demonstrated during therapy sessions with Frank, where we worked together to find a way to meet.

Our connection was strengthened through the choices of activities in which we engaged. When I first met Frank his finer and gross motor control were limited, often finding it difficult to open and use his hands and fingers, and use pushing and pulling force with deliberate intent. I have now been working with Frank for a year-and-a-half, and the progress has been amazing, with him showing more sophisticated finer movements along with variation of force in his gross motor skills.

This has been partly achieved by offering creative opportunities to fully express himself, take part, and be independent. Practically, this is done by leaving enough time for Frank to undertake and complete the activity or move, providing encouragement and positive reinforcement, and not putting any expectations or judgement on how it should turn out. Using craft activities is an effective way of doing this, providing more complex and challenging ones as progression occurs. For example, creating birthday cards for family members is a lovely, motivated activity to undertake. Frank was able to choose his colours using his eye gaze, and chose which hand he would like to hold the paint pen in by lifting his hand and slowly pointing a finger. With support, he was then able to move his hand and draw. A key part of this work is not to move the limbs yourself as the therapist, but rather be a supporting role, ensuring safety with dystonic jerks or absent seizures. Frank was then able to move the pen, creating his masterpiece; when Frank was done with a colour he would often loosen his hand, communicating him finishing.

From an autoethnological perspective, it connects me to that level of what one does being ‘good enough’ and not a perfect relay of another’s expectations. It is also partly sitting and being comfortable in the uncomfortableness of it not being what you expect or are used to in the culturally structured world of right and wrong.

Below is a self-reflection processing piece after I had seen both Anna and Frank in the same day. It makes me think of containment and holding, which in turn is encouraging movement and fluidity. The piece makes me think of this because of its wave like motions, and how the large right part is moulded to ‘hold’ the smaller different colours to the left of it. As both children are unable to stand, this is also symbolic of holding in a physical as well as a psychological sense. Also, the ‘scratch like’ or more blunt strikes on the left of the piece could represent a range of things, such as frustration, societal assumptions, limitations from the disability, as well as more internal aspects such as the ‘inner critic’ or low self-esteem (Paterson et al., 2012). From an unconscious perspective (both personal and collective) this could suggest an unblocking of channels or protection against these things, both from a sense of disability but also stigma and assumption.

OPEN IN VIEWER

Self-reflective piece (pastels, 27.05.22)

Joint sessions

Working within a strong multidisciplinary team can be a supportive way of progressing work with the client across many areas. A brief overview will be discussed of work with other health care professionals. Please note that joint working and the time and level of involvement of the professional involved with both clients discussed varies.

Conclusion

Overall working with this client group allows for rich therapeutic work to take place, on a transpersonal and NV level. Connecting with our own NV selves and our own inner child is vital to build a non-judgemental and supportive space. Providing creative opportunities, space and allowing choice is very important to utilising the therapeutic space for these clients.

Alongside this is key to considering one’s own experience with communication, as well as society’s cultural preference. Accepting this ‘other’ or ‘shadow’ allows for a more fully individualised space and self. This article has provided some techniques and examples of work both individually and jointly, as well as reflecting and highlighting my own experiences. Using autoethnography and case studies, it aims to demonstrate the effectiveness and necessity of giving people a voice when words are not present.

I would like to thank the young people and families for letting me share some of the wonderful therapeutic experiences in this article.