Co-design, ownership, disability-led design and improvement studies
A cool North London eyewear shop may seem an unlikely place for someone to choose a prosthetic limb.
The shop, with its contemporary mix of vintage furniture and mid-century modern graphics, stands in stark contrast to the clinical settings where prosthetics are often fitted.
But that contrast is partly why Dr Graham Pullin and his colleagues chose it to host a pop-up for Hands of X, a research project exploring new materials for prosthetic hands and new services for prosthetic wearers. Like much of Graham’s work over the past two decades, Hands of X approaches disability design from a different starting point.
Of course, the venue wasn’t the only unique aspect of the pop-up, which was held on 22 and 23 June 2017 in London’s Kings Cross neighbourhood. The hands on offer were also quite different from existing prosthetic limbs, which are usually either “cosmetic” (designed to look exactly like a human hand) or cyborg-like (often emphasising their robotic technology). Hands of X instead offered a middle-ground alternative that is simple, understated yet unapologetic. Hands were available in nuanced colours and materials including leathers, woods, metal, and felt, and wearers were able to browse swatches to see how the materials went together.
Wearers noted how different the experience was from the typical limb-fitting process, where aesthetics – and what they mean to the wearer – can sometimes feel like an afterthought.
“Hands of X is based on a firm belief…that a lot of people with limb difference do not feel well-served by the rather polarised existing choices,” Graham says.
That belief comes from extensive conversations with disabled people, conducted not just as part of the Hands of X project but ever since Graham began working in disability design as a young engineer in the late 1980s, before returning to art college to study design.
From the start, he noticed that something was missing from what is often still called “rehabilitation engineering”. A tremendous amount of effort went into developing assistive technologies, but often less consideration was given to the wearer’s relationship with the technology, or how it might shape their feelings about themselves and others’ perceptions of them.
“A common mistake is to think that something’s appearance only merits attention once you’ve resolved its functionality. But in our rich culture around objects of any kind, the two are not so easily separated” Graham says.
Graham thinks designers can help bring these less tangible elements to the forefront. This was part of his message in his 2009 monograph, Design meets disability, which called for design practitioners to be more often invited into disability-related design projects. And it underpins the 2019 manifesto he published with colleagues at the University of Dundee titled Super Normal Design for Extra Ordinary Bodies.
It also forms the foundation of his senior fellowship with THIS Institute, which began in July 2019 and will build on what he is learning from Hands of X. The project is sparking insightful reflections from wearers, and he hopes that their ideas and further research can inform potential improvements to the limb-fitting process.
Graham can’t yet say what those improvements might be. He recognises that it’s not financially viable for every person with limb difference to co-design a prosthesis. But maybe choosing a prosthetic hand could more closely resemble shopping for eyewear. It wasn’t all that long ago that glasses were viewed exclusively as medical appliances. Now, the people who enter that fashionable London eyewear shop go in seeing no contradiction between wanting their prescription fitted and their identity reflected.
That doesn’t imply replacing existing limb-fitting services with projects like Hands of X. But it might mean supporting deeper conversations between a wearer and their prosthetist throughout what is often a long-standing clinical relationship. At the moment, many practices use a tool called the Prosthesis Evaluation Questionnaire to assess wearers’ experience of different aspects of living with a prosthesis. It asks them dozens of questions about comfort and functionality, but it doesn’t delve much into the cultural aspects of wearing a prosthetic. It typically contains just one question asking wearers to rate how their prosthesis looks, from “excellent” to “terrible”.
“That’s a tiny pinhole through which to view this amazingly complex set of connected – and sometimes disconnected – issues,” Graham says. “The very question indicates the lack of importance placed on the cultural issues at the heart of disability design.”
Ultimately, Graham hopes that his THIS Institute fellowship studies can help understand how limb-fitting processes can better reflect the nuanced and changing attitudes people have toward their disability. And he says one of the biggest questions around those attitudes is about ownership. At the Hands of X pop-up, many wearers told researchers that, in the past, they never really felt that their prostheses were theirs. It was as if their hands were on loan from the limb-fitting centre, and they would get in trouble if they damaged them.
“The big issue here…is that feeling of ownership – whether a limb feels fitting to a person who is wearing it, and what relationship they have with it,” Graham says. “Not necessarily whether it feels a literal part of them, but whether it feels theirs, whether it reflects them, whatever else this relationship.”
Issues of ownership and identity can be difficult to unpack and even more difficult to address. Graham will continue to explore them while showcasing the Hands of X project in different venues across the UK, and throughout the rest of his fellowship work. But at that North London pop-up in June 2017, surrounded by eyeglasses designed to be both beautiful and functional, he says there were encouraging signs.
“A remarkable thing happened. After having browsed and agonised over their choice, we had people arrive at the moment when they spontaneously declared ‘Yup. That’s my hand!’”
Learn more about Dr Graham Pullin’s disability design research: