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Julien Carponcy (MRC Brain Network Dynamics Unit), Joy Todd (GLAM Division) and Jozie Kettle (Pitt Rivers Museum) were awarded £12,000 to support people with motor-related neurological conditions (such as Parkinson’s, and their families and carers) to work with researchers, engineers, and artists/fashion designers to create their own aesthetically pleasing mobility solutions, and to empower them to manage their day to day lives, inspired and provoked by collections from the Pitt Rivers Museum.

A draft design for the In Control By Design website © In Control By Design

Project at a glance:

  • Aesthetically pleasing assistive technology for people with motor-related neurological conditions
  • £12,000 awarded
  • 16 Oxford staff involved
  • 1 freelance artist
  • 5 workshops
  • 14 participants including some with Parkinson’s with a family member/carers
  • Outputs include a new ‘library’ of assistive objects

 

‘One of the participants said she would only use a Zimmer frame if it had an integrated fridge where she could keep her gin and tonic. There were countless moments like that.’

A piece of gallows humour, but also a neat encapsulation of the idea behind In Control By Design: talking to people with Parkinson’s not only about assistive technology, but about the form, aesthetics and feelings behind the technology and the need for it.

The project was conceived by Dr Julien Carponcy, a postdoctoral neuroscientist in Oxford’s MRC Brain Network Dynamics Unit. Julien said: ‘My boss at the University has always been interested in public engagement, so I had the freedom to explore and an opportunity to go a bit deeper. I went to the PER Lab workshop – it was project-driven rather than information-driven, which I liked, and I was lucky enough that they supported my proposal on creating objects for people with neurological conditions.

‘Scientists are very happy to talk to people about science. But it’s not often that we get feedback coming in the other direction. This project was shaped by the participants. 

Of the four Public Engagement Lab projects selected for funding, In Control By Design was the only one not to target a school-age audience. Julien’s idea of bringing scientists closer to the people for whom they innovate – in this case, adults with Parkinson’s – was developed in conjunction with staff at the Pitt Rivers Museum. Julien said: ‘I talked to Jozie Kettle, who works on public engagement with research at the museum, and Joy Todd from GLAM about the aesthetics of assistive objects. They pointed out that if someone didn’t want to wear or use something, then all that wonderful technology was useless.’ 

Joy added: ‘I have a neurological condition myself, and I know that while assistive technology has to be functional, there’s more to it than that. It’s about how you feel using it. Museums can add value there.’ 

The In Control By Design programme delivered five workshops, each attended by around half a dozen researchers, two or three museum staff, Artist Susan Diab, and a core of about 12 participants from the Oxford branch of Parkinson’s UK. Workshops variously explored the participants’ own favourite items, examples of assistive technology, the latest research in the field, and museum objects from a range of global cultures, such as a Southern African weapon turned walking stick and a Japanese Inro used to store medicines.

In Control By Design Tremor Display

Regular meetings continued beyond the workshops, migrated to Zoom following the coronavirus lockdown, and are still happening virtually at the time of writing in autumn 2020. Another key output is the Library of Things: a collection of tried-and-tested assistive technologies – such as anti-tremor spoons and path-finding ‘laser shoes’ – selected by In Control By Design participants to support the everyday lives of people living with Parkinson’s. Objects in the Library of Things will be available to borrow from the Oxford Parkinson’s UK group in exchange for short written or filmed reviews, enabling people to choose suitable technologies with confidence. 

Joy, who organised the workshops said : ‘The best conversations we had were in small groups, where people felt empowered to talk about how to live with Parkinson’s’. ‘The researchers taught the participants and the participants taught the researchers: one of the scientists spoke about how the direction of his Parkinson’s research had changed because of meeting the participants. And the museum collaboration with the scientists connected us with people with Parkinson’s, supporting a new long term local partnership.’

Beth McDougall, Communities and Families Officer, who also worked on the project added: ‘One of my main takeaways is that this type of project needs to be open-ended and fairly loose in what it’s trying to achieve. We didn’t manage to invent or create a new object, but the journey itself was so worthwhile – and we ended up with the Library of Things, which wasn’t planned at the start.’ 

Julien said: ‘The project was a huge amount of work – too much, probably – with implications in areas such as the legal and IP side that made things quite complicated. If I was doing it again, I’d suggest having fewer people involved but enabling those people to dedicate more time to the project.  

‘But, practicalities aside, working with the museum and the participants was hugely enriching and opened up all kinds of new perspectives.’