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:
Families
School and therapy teams
Industry
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,
seriously…).
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.
Image from British social reform newspaper, ‘The Graphic’ newspaper, published 1869 – 1932. Exhibited at EY Van Gogh Exhibition at Tate Britain.
Illustration and page from Charles Dickens’ Hard Times
Vincent Van Gogh – Worn Out, 1881
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).
Frank Gambini, 2019
Alain Urrutia, 2017
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.
References
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
I’m so delighted to share details of my first full paper co-authored with Mina Vasalou and Mike Clarke. It’s to appear in the CHI 2018 proceedings and has been awarded an honourable mention.
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.
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.
Judging from the nature of this post, you’ll probably gather that I’m reflecting on how to plan and carry out research that is ethical. The bigger challenge is being able to reflect this process in an application that is useful for purpose and relevant whilst steering clear of a tick box, paper-pushing exercise.
Actually, I’m noticing that the topic of ethics appears to be something of a life choice (no, seriously). A stroll down my local supermarket isle uncovers ‘ethically sourced food’ and ‘free range eggs’. In another context, healthcare, education and social care workers all sign up to practicing within the remits of their governing bodies, safeguarding children through our professional roles, whistle-blowing and engaging in regular training practices to ensure we are up to date with relevant policy. It appears that we are all working harder to protect our knowledge and experiences of protecting others.
Research ethics committees often seek to understand how projects overtly demonstrate informed consent but this is trickier when children cannot sign a form or understand the immense jargon-ridden language we splatter.
“I can see from your high tone and asymmetric tonic neck reflex that you are telling me to get lost!”
Do we then work with what we have and assume consent? Of course, not. But isn’t one person’s perception of a child’s non-verbal assent just as subjective as the next? If a neuro-typical child says ‘yes’ just to please an adult, who’s to say that a non-verbal child will respond any differently? Questions are raised in terms of gauging authentic views that use trustworthy practices for seeking them.
I’ve had some really valuable guidance from lecturers and course peers, especially on the process of working with children and young people, not to mention copious literature on the topic of sociological research. Most discussions on the topic are increasingly suggesting that working ethically is a highly dialogic process that spans the life cycle of all research and beyond. Asking questions, even when there is no clear answer.
In this post, I had intended to sum up my views on why AAC design research should start to involve children who are direct beneficiaries of AAC technologies.
It has long been established that children are expert at being children. Try as we might, therapists, teachers, engineers and designers can only go so far as to have a view about what children might think about a specific idea or artifact. We can’t actually assume we are any closer to creating appropriate and usable technologies unless we include the key stakeholders themselves. Saying that, the heterogeneity between children who use AAC makes it incredibly difficult to represent the views of children themselves in research without adding tokenistic contributions. So what do we do then? My initial thoughts; start small and be clear about who communicated specific opinions. Some views might be generalised, others may not be.
In beginning to explore research with children and young people, I’m quickly establishing that there is a great deal already out there which describes children as active participants.
Much of what I’ve read describes this far more eloquently than anything I could compile and critique here. For this reason, I’m directing the remainder of this post towards Prof. Priscilla Alderson’s blog post, entitled: “The missing third that skews sociology”. Here is the link to this post. I hope you enjoy it as much as I did!
It would be fairly naïve to assume that I could easily master a new language, with a totally different linguistic system, at the ripe old age of thirty something without lots of trial and masses of error. If I was limited further by being exposed to my new language only once a day, with selected people and practicing only how to talk about the weather I’d probably decide it wasn’t worth the hassle.
Children who have motor difficulties that impact on their speech development are often limited in their opportunities to play and interact in different ways of their choosing. This has widely been discussed in previous research (see Bedrosian, 1997; Blockberger & Sutton, 2003). They are also likely to be introduced to other ways of talking much later than if they were to have developed natural speech, constantly playing ‘catch up’, with language systems that are challenging to learn. Light and Lindsey demonstrated this, back in 1991, when exploring the mismatch between young children’s developmental levels and AAC technologies that were available at the time. Those endless opportunities for children to graze their knees (in a metaphorical and literal sense) were just not there then, and still not present today.
We know that some children understand, develop and learn differently and this isn’t always in a step-wise, developmental way. Language disorder implies a varied pattern of strengths that doesn’t correspond to developmental norms. This means that all children will not necessarily learn the same pattern at a delayed rate. Similarly, as a neurotypical adult, I am unable to empathise with the sensory and emotive occurrences that some children experience. This means, I am constantly missing opportunities to support children to frame and share these experiences with others.
What’s the goal?
We can’t expect that all children will play the piano, if they prefer the drums
If we’re going to begin to give a child a fighting chance of learning to use their AAC technology, perhaps we ought to start digging deeper. What does the child actually want to use it for? What are they currently expressing? Is this very different to what they have currently have available to them?
Often, as language specialists it’s no surprise that we choose to focus on training children to use their AAC to ‘transmit language’ (like telling a joke, answering dad’s question or expressing a dislike of broccoli). This might be completely acceptable and appropriate for them, just as long as their goal is not different to ours. But what happens if the goal for that child is to use their device to enhance their social image or self esteem? Interestingly, Light, Page, Curran & Pitkin (2007) showed that children who were involved in their study of designing devices for other children who used AAC said their friends would prefer devices that had varied functions, not just confined to verbal language.
In reflecting on my clinical work, I can’t help but ask why then am I bound by language development if I know that children follow different trajectories? Should I continue gradually working through the continuum of introducing real objects, before photos, symbols and written words? What happens if we happen to stick with symbols for extended periods? Are we hindering opportunities for supporting literacy development or other forms of expressive communication?
Lots of questions but food for thought, I guess.
References:
Bedrosian, J. (1997). Language acquisition in young AAC system users: Issues and directions for future research. Augmentative and Alternative Communication, 13, 179-185.
Blockberger, S., & Sutton, A. (2003). Toward linguistic competence: Language experience and knowledge of children with extremely limited speech. In J. Light, D. Beukelman, & J. Reichle (Eds.), Communicative competence for people who use AAC: From research to effective practice (pp. 63–106). Baltimore, MD: Brookes
Light, J., & Lindsay, P. (1991). Cognitive science and augmentative and alternative communication. Augmentative and Alternative Communication, Vol. 7, pp. 186-203
Light, J., Page, R., Curran, J., & Pitkin, L. (2007). Children’s ideas for the design of AAC assistive technologies for young children with complex communication needs. Augmentative and Alternative Communication, 23, 1-14.
Disclaimer: The author of this blog post has no particular preference for pianos or drums and does not assume that either is more appealing than the other.
