Cultivating Care

photo of yellow green red and brown plastic pieces on surface that shows they are connected through a web

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!

Cross pollinated disciplines

 

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.

David Escalona, El Carro de Apolo (Apollo’s Chariot), 2015. Gold plated folded wheelchair.
David Escalona, El Carro de Apolo (Apollo’s Chariot), 2015. Gold plated folded wheelchair.

 

David Escalona Puntos de apoyo (Supporting Points), 2015. Three wooden bars with alloy braille inscription.
David Escalona Puntos de apoyo (Supporting Points), 2015. Three wooden bars with alloy braille inscription.

 

 

A focus on values

silos of lego

 

 

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.

 

More on this topic to follow in later posts.

 

.silos of lego

The story so far

old library books

Encouraging children to take on any form of technology can be tricky for so many reasons.  A quick search for computers for kids brings up hundreds, thousands of choices which compete for our attention.  Each has a seemingly impressive list of specs and multiple capabilities, from an adult perspective.  Usually, we manage to decide on one (whether it be for gaming, learning, communication or all) but the excitement of tearing away the polythene wrapping and dislodging it from its polystyrene cocoon quickly turns into a reality that now, you’re on your own and it’s up to the child to use it or not.

If it’s engaging you’re onto a winner.  The device begins to mesh into everyday life, across home, school, grandma’s house and other and the excitement snowballs until everyone that needs to, can recognise its value. If it’s boring and too difficult to learn to use then it is destined for the cupboard; occasionally to be brought out to humour the well-intentioned speech therapist who is recognised to be working with what they have.

Within the field of technology design, participatory methods are increasingly being called upon to embed the values, needs and preferences of users at early stages of the design process, moving towards technologies that are closer aligned to what users want from their systems.  It’s great to see more and more design research involving children with neurodiversity.  Some key studies that have developed methods and frameworks for engaging children who have diverse needs can be found here, here and here. Whilst utilising therapeutic strategies and prompting us to consider total environmental factors, there is still a need to look at use cases, particularly for what is potentially the ‘hardest to reach’ who have severe speech and physical difficulties as well as additional needs.

Well-established augmentative and alternative communication (AAC) frameworks have provided both the foundations and pillars to my clinical work over the years (see Janice Light’s definitions of communicative competence) but it is only now that I’m starting to question where the child and their choices fit into this.  By choices, I mean authentic views and engagement that goes beyond the limitations that we, with adult eyes, impose on children.

Perhaps not all children want to use words and language to express themselves? Perhaps the learning and communication environments we provide are only pushing our adult agendas? Perhaps we need to stop and reflect on what children are telling us when they let out an audible sigh as we once again dust off their communication aids that lurk in cupboards?