Designing music instruments for people with profound multiple disabilities

Original title: Het ontwerpen van muziek-gebaseerde communicatie-interventies voor mensen met meervoudige beperkingen.

Everyone needs social interaction. People with profound intellectual, motor and sensory disabilities often can't communicate through speech, sign language or symbols, but the wish to connect is still there. Making music together with a music therapist is one of the few ways in. Most instruments, though, aren't made for them, and every person is different. That calls for custom work.

This research asked one question: how do you design a music instrument that strengthens affective communication between a music therapist and someone with profound multiple disabilities?

How

I used the Design Research Framework (Kuipers et al., 2017) and a research-through-design approach. Observations (fly on the wall, day in the life) and conversations with families and caregivers fed into prototypes. Each prototype tested a design principle and was tried out during music therapy sessions, following a fixed test protocol. Using the Wizard of Oz method, I simulated how a prototype would work instead of building it fully. That kept prototypes cheap, quick to change and easy to tune to each person.

Four prototypes

• A tactile music box. A cube with rough and smooth sides, where touching a ribbed surface played a drum sound.
• A clay piano. Soft clay keys wired to a Makey Makey, so small movements could play familiar piano sounds.
• An adapted iPad. A sturdy case, a microfibre cloth on top and eight pads in Keezy, filled with sounds recorded during sessions, like voices and personal songs.
• AUMI. Motion tracking that turns small finger movements into piano notes, so the therapist can play along.

Design principles

1. Tactile feedback matters. A tangible object you can feel is a key part of the design for this group.
2. Use recognisable sounds that fit the person's world. Familiar voices and songs got the clearest reactions.
3. Make it easy to adapt and configure. Prototypes have to change quickly, per person, by the people around them.
4. Involve the person early, so there's time to get used to the shape and the interaction.

What came out of it

The adapted iPad worked best. Recognisable sounds combined with tactile feedback activated people and created small moments of real interaction with the therapist: dancing, clapping, laughing, making sounds back. The structure of each session mattered as much as the instrument. A fixed ritual of greeting, checking in and playing together made every interaction a shared one. And it stayed cheap: an iPad and a free app.

COVID-19 stopped the sessions halfway through, so the later prototypes never got the iterations they deserved.

With these principles it is possible to make custom instruments, toys and other interactive tools for people with profound multiple disabilities. It takes patience, depth and dedication from the designer.