What we Learn When Designing with Marginalised Children

IDC 2020 Workshop 12: What we Learn When Designing with Marginalised Children

June 2020, online event

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?

Really pleased that we were able to carry out this workshop at the ACM Interaction Design and Children conference in June 2020, in Virtual-London 😉

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.

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.

 

 

Ethics & integrity – How do we make it meaningful?

crying child

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.

 

crying_child

 

Levelling the playing field

image of Dave Grohl on drums & Stevie Wonder on piano

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.