Throughout 2021, a central part of my ESRC postdoctoral fellowship will be to disseminate the findings of my doctoral research that investigated communication involving children with severe speech and physical impairments and their social groups.
The aim is to share this work beyond academia so that the findings can be translated as meaningful insights for practice*.
I will focus on producing resources for three main communities:
School and therapy teams
I’m really looking forward to creating and sharing these resources as well as holding events that will communicate some of the fascinating insights from empirical research. I hope that the findings will be useful in helping to consider the interventions and technologies we choose for supporting communication.
*Until now, and throughout the course of my PhD, the focus has been on sharing this research within academia through conferences and journal publications. A list of research outputs that were generated between 2015-2020 can be found in the work menu item.
For the benefit of three years down the line, when the pace of London life will likely resume to ‘business as normal’, I’m writing this post as daily routines are disrupted, relations protracted, and thoughts linger a little while longer. Like many others who are reflecting on the social impact of the corona virus pandemic, the past few weeks have made me acutely aware of how care practices are being enacted right now; what this means for how care can be cultivated, and what I choose to leave behind.
In my PhD research,
one of the most unanticipated insights was observing the ways that children
with severe speech and physical impairments enacted care practices with others.
Care was a key value, evident both through children’s forms of engagement and through
the subject matter of what they communicated.
For instance, when children in my study spent time out of school or in hospital for extended periods, a networked arrangement of people, technologies, artefacts and processes all allowed for care to be enacted as an ongoing process. I watched as children repeatedly asked after their friends and made cards for them in their absence. ‘We miss you’ cards were physically created, electronically transported and digitally remade in new contexts. People, crafted materials and online platforms and processes all allowed for these co-created and ongoing practices to take place (see also Light & Akama, 2014 and Brown & Choi, 2018 for more discussion on designing for care).
Care was expressed through material objects, like decorating children’s belongings in their absence and making cards, but also by finding affinity in what children said they liked to do, by trading stories and creating common ground. Care was evidenced through closeness and touch; holding hands, leaning on each other, and perhaps most powerfully, being at another’s side.
Fast forward to March 2020, I observe how similar arrangements are both cultivating and inhibiting care. Having spent the past two weeks largely by myself, my laptop and mobile phone have been a lifeline for care. Regular video and audio calls, messaging, exchanges of funny memes and videos, as well as daily YouTube yoga and mindfulness sessions, are all collaboratively practiced in one form or another. Added to this, in my working hours, regular video calls, emails, chat forums (and hopefully more social virtual coffee and lunch breaks) are all reinforcing networks of care in my daily routine, in the absence of closeness and touch.
What is less
helpful, are those shared ‘beware’ threads and videos that are making their
rounds. I appreciate that these are probably shared with all good intention,
but they do nothing more than exacerbate panic and stress. No, I won’t keep my groceries
outdoors for 5 days before bringing them in the house, nor will I use that 50% homemade
Cypriot ‘zivania’ brandy I have in my cupboard to clean my worktops (I mean,
Right now, I’m trying to turn down the volume of all that unnecessary chatter to learn from insights gained from children. Right now, I’m attending more to making care. Right now, I’m making in a physical sense and drawing on technology and networks to remake this in new and care-ful ways. I highly recommend it!
So much child computer interaction (CCI) research has focused on the process of how to involve children and technology artifact production, especially when there’s a ‘problem’ to be ‘fixed’. These insights have been hugely important, but to allow for design work with marginalised children to mature and grow in pace with the concerns of the broader CCI community we propose that there’s a need to be clear about what is learned from past experiences.
Can we learn from these encounters?
What can we learn?
What are some of the challenges?
What forms of transferable knowledge does this take?
To read about the discussions that this workshop generated, please visit the Inclusive education technologies website. A very big thanks to the workshop participants and co-organisers for being part of it.
As the UK healthcare system becomes evermore fraught with cutbacks in it’s decade of austerity, many allied healthcare professionals are choosing to side-step into academia. When I first became interested in research, my aim was not to leave the NHS totally, but to find a better balance in doing things that I enjoyed more in my working day. Naively, what I did not anticipate was that the academie would be equally taxing in so many different ways.
In writing about my experiences, I hope to share some of the things that I wish I had known more about or at least appreciated. I hope others might find these reflections helpful. I will try my best to reflect without rose tinted glasses but acknowledge that the distance away from clinical work has probably made me less jaded over time.
Things that keep you awake at night There are many things in my NHS job that I did not even imagine I would miss or long for. Juggling swelling caseloads where everything is urgent; managing complex clinical decision-making; mediating relationships between fraught services, and many other horrors to name a few. I was mostly aware of wanting to step away from paper-pushing practices as the next new government brought in new NHS agendas for our clinical, IT and operational processes. These things I knew I would not miss. However those complex cases and difficult conditions were the glue that brought team members together. Knowing that I needed to work closely with every other member of my team: the physio assistant, the physio, the OT, the school nurse, the teacher, the dietician, the paediatrician, the list goes on. Each of these members all brought with them different skill sets and flavours, that made the job interesting and colourful each time a new challenge arose.
All the beautiful things Working in community settings meant being embedded in people’s lives. Having the luxury of being in the same school or health centre for most days of the week meant that decisions did not always have to be instant or reactive. Instead, drawing on knowledge of what had happened before, on people’s local values and the local supports that I had access to, offered opportunities for making positive changes in people’s lives. Being in a stable place over time was the ultimate antidote to sudden action as myself, other colleagues, families and children were all able to regain some element of control in situations where health conditions and resources were changing constantly. Separately, I’ll also never underestimate the privilege of how much time I was able to spend with the children and families in their home settings. Unlike research fieldwork, the door is (likely) always open. Seeing a child more frequently than they see their grandma or cousins means that families are both desperate for your support and have faith in what you are doing. Experiencing this meant being closer to people and empathising with where they are coming from. Whilst, of course, I’ve always tried to keep my work and personal lives separate, with this closeness, also comes grief. I regularly think about the 14 children on my caseload who have sadly died over the years and wonder what it must be like for their families and friends as time passes too.
Fresh ideas, exciting paths Clinical work is largely driven by evidence based practice of established methods and processes. Busy working days leave little time for rethinking higher level decisions beyond ground-level problems. For this reason, universities and other research contexts are ideal places for innovation. Studying new disciplines and talking to people with different experiences has given me a fresh burst of energy to in my working day. Of course, academia is HARD WORK. Compared with my previous jobs, the deadlines are harder, the intellectual effort greater and like before, most things are urgent all of the time. For early career people who are thinking about research and teaching, there’s the extra load of planning classes, marking, and supporting students. Since recently submitting my thesis, I’ve chosen to focus on the research bit for now. I’ve been fortunate to work with an incredibly skilled and supportive team who are on hand to guide me through these early stages and new territories. What’s been great? Finding like minded people who share similar attitudes to the kind of work that excites me. Find your tribe. It’s so important.
In my very first speech therapy job I was supported by two amazing women who inspired me to pursue assistive tech and communication; Miranda Macaulay and Bonnee Harkess. On the wall above her desk, Bonnee used to have that Harold Thurman quote about doing what makes you come alive; you know the one. I end this post with that in mind. Whilst I’m learning that the grass is neither greener nor drier on either side, what’s important to me is being faithful to the core beliefs and values I hold in both roles. Let’s see how all this research business pans out!
A large focus of my PhD work has been on finding ways of hearing and amplifying the voices of non-speaking children with physical disabilities. Generating children’s voices that are faithful to what children want to express about their values and priorities, as well as legitimately capturing how communication happens has been a central issue.
For a long time, I’ve thought the data that was generated has been so rich with many implications for design, education, therapy and more. Children’s meaning making practices revealed new complexities and highlight some of the incredibly strategic and expert ways that they achieved their communication goals. Finding ways of conveying this whilst keeping the data alive has been such a challenge. Of course, my interpretations have a big effect on shaping the findings, but regulating this interpretive effect and transcribing examples from the data that closer align with child centred accounts has been an enormous challenge.
The issue of transcription has been problematised in different fields with a growing concern for treating transcription as a form of transduction (Cowan & Kress, 2017), with the products of this work becoming documents (Cowan, 2017). As I attempt to ‘tie things together’ in writing up and working on my transcriptions, I’ve increasingly questioned how (and whether) my representations of the data are portraying what children appear to prioritise. I’ve taken a social semiotic multimodal approach to transcribing (Bezemer & Kress, 2016; Kress, 2010) that embraces the many different modes that people use, distributing value that is traditionally placed on speech. I’ve attempted to document simultaneous actions, structural arrangements, proximity, looking behaviours and other aspects through time marking, line drawings, emboldening text, and other ways. I imagine that this is not something I’m going fully address (or be happy with) through the PhD work but hopefully it will act as a starting point for the next bit!
Having not been satisfied with using tradition orthographic transcription methods that represent how communication is organised around talk, I’ve looked to other examples that deal with ways of representing people. Some of these cases are situated within academic research, for example Bezemer et al, 2011; Cowan, 2017; Mavers, 2011, others have been drawn from the art world.
I recently managed to visit the latest Van Gogh exhibition at the Tate Britain and despite the crowds, had the opportunity to ponder on how his works represent people. As the show focused mainly on the ways that Van Gogh was inspired by and inspired British artists, the show captured situated influences of the time, for instance, Charles Dickens and the British social reform newspaper ‘The Graphic’. The texts that accompanied art works describe how Van Gogh wanted artists to contribute to society through the ways in which they portrayed the people. Looking at some of the works as someone who is removed from the time and context within which they were produced, I was struck by the focus on struggle and angst. Offset against what is known about Van Gogh and mental illness, his works (and how they are curated) are designed to document these themes.
In a related way, I’m constantly intrigued by how artists convey their mark in representing people. For instance, my drawing class teacher Frank Gambini (see: https://www.instagram.com/frankgambinoart/) has an alternative and somewhat stylised way of representing people that can appear shocking for the sitter. Other artists prioritise technical precision in figurative works, or alternatively use a multitude of techniques for hiding and revealing different foci (for example, Alain Urrutia’s works often deal with ways of concealing and exposing).
These examples have somewhat strayed from the issue in question, which is: how do I go about capturing children’s voices? Well in a divergent way, I’m getting there.
Whereas the examples drawn from the art world have documented ways of representing by prioritising what the artist perceives as central in representation, I (as a social sciences researcher) have a different priority. For example, instead of foregrounding human struggle, people’s personalities or conveying my technical skill, my intended goal is to present what children appear to prioritise through their communication experiences. There may also be an element of wanting to convey technical skill (it’s an examined PhD thesis!), conveying children’s personalities, struggle, expertise and many other aspects too, as transcription does not happen in a vacuum.
On the matter of representation, I acknowledge that children’s voices are in dialogue with the voices around them. Through triangulation, different data sets are helping to confirm inductively generated ideas. This gradual movement between data and interpretation; as well as interpretation through documenting in different ways, is helping to build a picture that captures some of the complexities of what is happening and why this might be.
Bezemer, J, & Kress, G. R. (2016). Multimodality, learning and communication: a social semiotic frame. London ; New York: Routledge, Taylor & Francis Group.
Bezemer, J, Murtagh, G., Cope, A., Kress, G., & Kneebone, R. (2011). ‘Scissors, Please’: The Practical Accomplishment of Surgical Work in the Operating Theater. Symbolic Interaction, 34(3), 398–414. https://doi.org/10.1525/si.2011.34.3.398
Cowan, K. (2017). Visualising Young Children’s Play: Exploring Multimodal Transcription of Video-recorded Interaction (Doctoral thesis, unpublished). UCL Institute of Education, London, UK.
Cowan, K; Kress, G; (2017) Documenting and transferring meaning in the multimodal world: reconsidering “transcription”. In: Serafini, F and Gee, E, (eds.) Remixing Multiliteracies: Theory and Practice from New London to New Times. Teachers College Press: New York.
Kress, G. R. (2010). Multimodality: a social semiotic approach to contemporary communication. London ; New York: Routledge.
Mavers, D. (2011). Children’s drawing and writing : the remarkable in the unremarkable (1st ed). Retrieved from https://trove.nla.gov.au/work/37196806
The start of the year proved itself to be an adrenaline (and coffee) filled journey of presenting my PhD project and discussing new directions with many people – old friends and new. It also coincided with a decision to take on more clinical work, at a point where I felt somewhat distanced from the children, families and colleagues who were so embedded in my life up until now. Having genuinely missed playing with children and getting my teeth into clinical decision-making dilemmas, I decided to do so, albeit in small doses. Whilst this was practically manageable, it also highlighted the disconnect between two very separate perspectives of my clinical and academic working life.
The primary focus of my clinical work has always been to look for barriers for communication in children’s lives at the impairment level and beyond. Academically, it has been more to do with looking for solutions that address things just as they are. Now, of course, clinically the next step would always be to begin to provide scaffolds, rehab, learning etc, that’s still the second step, having first dug deep to understand the nuances of difficulties at different levels. Conversely, the design-oriented, solution-focus perspective will also always look to understand barriers but the attitude with which investigating happens is different.
At the start of my studies, it was this disconnect that drove me to change my practice in the hope of bringing new solution-focused sensibilities to designing for communication involving children who have severe speech and physical impairments and their social groups. I’m now starting to think that perhaps there isn’t such a disconnect at all but just a need to tune down the saturation levels of both perspectives. There’s definitely merit in both ways of thinking, but as a clinician who is side-stepping into interaction design studies, I need to be aware of how much my judgements and reasoning can help or hinder the voices of children who are rarely heard in technology design.
At the CHI conference this year, our paper was part of the ‘designing to empower‘ session where, to my delight, I met two other speakers who were ‘clinicians-turned-HCI-researchers’ (is that a thing?)
I immediately hit it off with the wonderful LouAnne Boyd and we spent the coffee breaks and then afterwards many emails discussing parallel good points and challenges in our split working lives. Through the wonders of social media (yes, it worked out this time), I was then connected with Yao Du who went on to lead a reflective experience report the three of us wrote for this year’s ACM ASSETS conference. The whole thing has been pretty cathartic to say the least. Through our joint writing practice I’ve realised that in coming into HCI research from another discipline I’m not expected to be a jack of all trades. For example, it would be pretty comical for me to attempt to ‘programme’ in a computer science sense, I’ll stick to programming devices in the way we know it in speech therapy, thanks. Instead, in keeping my clinical identity whilst tuning down the saturation levels at times, I can draw on clinical reasoning and assessment skills to not give voice so much as amplify what children are already saying.
My PhD project is loosely split into three slices which inform each other. The first slice investigates how high tech AAC devices are used in conversations involving children and adults in school, with design implications in mind. The second slice is exploring how communication manifests more broadly; with and without technology. The focus is on how children with severe speech and physical impairments communicate meanings about themselves and their lives. The third slice is looking at representing this information from a child-centred perspective with empathy. The broader goal is to generate a tool for design that prompts new ways of thinking about how digital technologies can advance communication. (wow. my whole phd in six sentences 😉 )
The paper documents the first part of the project, examining how communication is created when AAC is present. I focus on analysing video data from conversations in school involving five child participants, their peers and adults. Please get in touch to share your thoughts.
Since my last post, I’ve spent a considerable amount of time studying some of the different perspectives on communication. In a bid to understand how my own thoughts align with or differ from established theories I tentatively made a mental note of the assumptions I hold. Of course, my assumptions were initially overwhelmingly concerned with interpersonal communication (something to do with being a speech therapist, perhaps) but I also started to consider broader communication that departs from interpersonal interaction.
I’ve found myself dipping into all sorts of chapters, articles and discussions that somehow conceptualise the nature of communication, and to say that the proposed assumptions of others are poles apart would probably be something of an understatement. What started as a narrow(ish) literature search on theories of communication gradually evolved into philosophical minefield on the study of being. In an attempt to cap this somewhat I summarise some useful reflections on some of the different theories.
Linguistic theory prioritises how language functions. This is probably less useful for explaining how non-verbal children communicate. Having said that, Grice’s maxims and discourses on intention and politeness have some definite application for explaining conversational phenomena in all situations.
Work from the Bakhtinian circle offers insights for how social constructionism has developed. The idea that individuals have a uniqueness that is shaped by and shapes ‘being’ is interesting. Proposing both an active and passive participation in being implies that identity construction is shared by all. Also, the perceptions we bring to a situation impacts on how communication is achieved. In the context of the notion of ‘generationing’ of children, Alanen (2001) suggests that when constructions of ‘childhood’ change, constructions of ‘adulthood’ also change due to the internal relations between the two.
Whilst not directly referred to as constructivist at the time, Piaget’s studies were concerned with understanding how human beings know the world, empirically investigating the emergence and progression of knowledge through applying mental transformations in social environments. He proposed that knowledge develops overtime through processes of assimilation, accommodation and adaptation, terms commonly used in biology. He continued to describe that new neural pathways become shaped though interactions with the world, termed construction.
Studies of the naturalistic body have influenced work on the relationship between the body, self identity and society from a biological basis for example, work on gender and racial discourses. Whilst naturalistic approaches continue to exert influences for popular images of the human body to date, they are insufficient for understanding the social importance of the human body as they have largely treated it as ‘a receptor, rather than a generator, of social meanings and relationships’.
Foucault’s work had to be included somewhere. The idea that the body is influenced by external forces has widely been referenced. This has famously been depicted through the representation of the panopticon prison whereby a circular building of cells makes prisoners believe that they are always on surveillance from a central watch tower position. However, overlooking the discourses in which the body inhabits would take a disembodied perspective of the body’s existence which can’t explain lived experiences. Why is this relevant here? Well communicative acts of the body manifest in the context of other communicative acts.
In discussing the body, Haraway’s work cautions us to be mindful of dualisms that unduly separate constructions of reality from mind-related reality. This framing acknowledges that knowledge is socially constructed through contextualised embodiment.
Considering the embodied ways that meaning is made, Kress proposes social semiotics which is centred on how signs are constructed through form and meaning. Considering the resources that people use to construct signs, this perspective credits the many resources that are used (beyond words and speech).
In a separate direction of enquiry, Latour takes a non-anthropocentric perspective, reminding us of the processes of interaction with endless other materials beyond humans alone. There have been many recent applications of this for thinking about communication (e.g. internet of things). For situated communication involving children who have severe speech and physical impairments, beyond communicating with other people, material objects (everyday objects and ‘special’ assistive ones) hold communicative value.
I could continue with this reflection on perspectives as there are many others that I’ve missed, but I’ll stop there for now. I imagine my next post will be sooner than the last. I promise it will offer more clarity on how these perspectives have informed my analysis (-:
The benefits of interdisciplinary perspectives to tackle every day problems have long been advocated in many walks of life. Without the influence of arts and sciences, how could solutions for any situation be sustainable at all? Consider for example, any given smart phone. Whilst packing in a plethora of technical necessities, they couldn’t possibly be usable if they were not so beautiful somehow. Aesthetically pleasing in the way they look, feel and among other things, enable access to capture and edit photos, videos and music. Not because we all consider ourselves serious food photographers or music enthusiasts, but because these things are intertwined in our lives and we are somehow pleasured by the act of sharing our experiences.
Why then, when I think of assistive equipment (hand splints, walking aids, adapted keyboards) do I sigh in disappointment that they are not so sexy? Actually, they are not sexy at all. They serve a functional purpose, often engineered with physiological goals in mind. Mass-produced to keep costs low, understandably.
In his book ‘Design meets disability’, Graham Pullin invites us to construe new perspectives for the design of adaptive aids and equipment that, refreshingly, alert us to the fact that different people might actually have different tastes, shaped by their age, gender, social class, environment as well as many other factors. One example that I often recall is the account of the athlete, model and actress Aimee Mullins, whose collaborations with Alexander McQueen and Dazed & Confused magazine present a lasting, iconic image of Mullins wearing nothing but her carbon fibre running legs and tracksuit bottoms. This and a latter image of her jaw-dropping, hand-crafted wooden legs carve out an image in the mind that is difficult to forget. Not because they present her as an icon for disability, but because (for me) they present her as an icon for people.
Pullin’s design thinking approach invites us to consider designing all sorts of adaptive equipment and aids from new perspectives, for example, creations that are fashion pieces, designed to be exhibited and worn with pride: to be noticed rather than discretely hidden.
This perspective makes me consider how disability is communicated in different contexts; whether there are differences in how this is projected through the social model of disability; and how far this goes in changing a person’s views on how they construe disability.
I recently visited a show at the Copperfield Gallery, London, with works that were collectively framed around the title ‘compassion not gain’. Whilst on first look I thought that this was probably intended to rouse empathy for disability, the arrangement of pieces communicated something far deeper. A gilded wheelchair entitled ‘Apollo’s chariot’ positioned facing a limply hanging parachute (‘Fall, where the birds die’), next to a wooden ballet barre inscribed in Braille with a poem by Frida Kahlo that described overcoming frustration through strength of will, suggested that all bodies are vulnerable at some point. Whilst the artist David Escalona sensitively projecting fragility in human kind, his pieces highlighted that all forms of struggle are ever changing and lie on a continuum. If it is in fact society that enforces disabling barriers rather than individualised impairments, perhaps a golden chariot does accurately represent a wheelchair for a specific individual or perhaps the words of Kahlo’s poetry can accurately depict the emotional and physical struggle of a ballet dancer.
These examples are only a few of many that highlight the value of seeing everyday obstacles through a different lens; a design thinking approach to consider known situations in new ways. More on design thinking to follow.
Over recent years, child computer interaction (CCI) research has pushed the agenda for interaction design, embedding the contributions of children throughout the design process. Researchers are teasing out and critiquing the roles that children are proposed to play and the impact this has on their contributions (see for example Alison Druin’s work on the hierarchy of roles, 1999). What is less clear, particularly for children who have neurodiverse profiles, is how their contributions actually impact on design decisions in practice. This leads me to side-step and explore what we are actually expecting from kids in research.
I’ve mentioned in previous posts that we as adults cannot begin to assume what children might want from their technologies without asking them, which pretty much just repeats and reinforces the direction of recent qualitative CCI research. What I have struggled to gauge is how we begin to describe children’s meaningful contributions in terms of reflecting what is important to them and what we call this.
I’ve noted that some researchers, particularly those working in the fields of co-design (or related) are exploring the notion of values. It is increasingly becoming apparent that defining the term ‘values’ is a tricky task as any variation on its definition consequently impacts on its exploration. But how can we investigate it if we can’t define it? Surely there’s some synergy to be had!
This post isn’t intended to be a review of the literature so I won’t be defining and cross-referencing here (but look out for that soon). This post is intended to shine a light on adult expectations for what we think children will want to share (overtly or indirectly) then challenge this so that we can once again reflect on all the things that actually reflect meaningful life experiences for children that we miss – because we define in narrow terms.
Confused, right? Well, yes. It’s a muddy topic that has silos of mind-blowing advancements which are just that; self contained and not quite applicable for real-life cases that challenge predefined scenarios.