Design of the month:

An instrument for Henar

Henar is a girl with a great taste for music who suffers from ketosis encephalopathy, which makes it difficult for her to use conventional instruments. But this has not prevented her from getting musical training and playing in an orchestra. The project ‘An instrument for Henar’ aims to develop an adapted MIDI musical instrument, and Autofabricantes has collaborated in its design and manufacture so that not only Henar can play but also so that the final system is modular, with a view to manufacturing new personalised instruments adapted to the different needs of other people.

We spoke with Francisco Díaz, coordinator and researcher at Autofabricantes, and with Jorge López from the CeLeo Centre, promoter of the project.

What was the starting point and main objective that led you to create this instrument?

Jorge Sánchez: The creation of this instrument stems from Henar’s love of music, her need to play and be part of an orchestra.

Henar has a very severe motor impairment and this confronts her with communication challenges that limit her social access. In order to communicate she uses a Dynamic Communicator, an Alternative and Augmentative Communication System, with voice output, which is very slow.

When we started the project, Henar was 14 years old and her social relations, outside her family and care environment, were very frugal and basic. At that time, Henar had a very high motivation to learn and perform music, even composing some songs with Sibelius (score editing software). She was taking adapted music classes at the Municipal School of Music and Performing Arts “Ismael Martínez Marín” in Cuenca.

In this context, we intend to make music more accessible to Henar, creating an instrument with which she can orchestrate and enjoy collective creation.

“An instrument for Henar” is born in an accessible way and that is always within the tonality, it is not only an instrument for music, it is a tool for socialisation. Furthermore, we wanted it to be replicable, open source, so that other interested parties could build it. And finally, we wanted it to be affordable, so that its price would not be a barrier for those who wanted to enjoy it.

What was the biggest challenge you faced to move forward “An Instrument for Henar”?

Francisco Díaz: The main challenge was to integrate the technical and Henar’s needs into the design. On the one hand, to find the electronics technology that would provide musical quality, easy to program and economical. On the other hand, it had to allow for modification and integration of the buttons, etc.

In terms of physical design, we had to integrate all the cables, electronics, etc., adapt to Henar’s needs in terms of shape and dimensions, and also make it modular and transportable.

The instrument has evolved in different versions with the aim of improving and adapting it, where does the project stand now and what are the next steps?

Francisco Díaz: Now the Henar #4 is finished, it is a much lighter version than the #3, at a technical-musical level it is similar but in the design we have managed to substitute the rigid woods for fabrics that integrate new flexible and soft buttons. We went from a hard prototype to a textile one.

Your collective research project seeks to generate alternative and accessible solutions around functional diversity, how did Autofabricantes come about and what was then the main objective?

Francisco Díaz: Although the germ was in a parent project called EXando una Mano in Seville, Autofabricantes was born in Medialab Prado [now called Medialab- Matadero Madrid] in 2015 as a project to develop among a group of citizens a myoelectric arm prosthesis for a child.

This involved the development of electronics, sensors, motors and very complex integration design. This first call and challenge was joined by 29 people from different fields of knowledge, including families who contributed their experience. Later, the specific working groups were consolidated and more people were added. In total, more than 50 people collaborated in this first project, although we did not manage to finish it.

What positive impact at different levels do you see the use of these prostheses having on the daily life of a child or adult?

Francisco Díaz:  Nowadays, the problem for projects of this type is funding and the difficulty in obtaining it. It is also very difficult to professionalise projects or keep them alive in the long term, due to the energy of the people who collaborate, life changes and the precarious lives we lead, which leave us little room to participate and collaborate in any cause or civic initiative.

In the world of prostheses there is a very high level of technological evolution, with increasingly advanced prostheses, but also more expensive and not covered by social security. Moreover, we are in a context where large companies are looking for market niches but do not include users in the decision-making process, so they make very advanced prostheses but have not really asked people what they need.

What are the current difficulties and prospects in the world of prosthetics?

Francisco Díaz: Nowadays, the problem for projects of this kind is funding and the difficulty of obtaining it. It is also very difficult to professionalise the projects or to keep them alive in the long term, because of the energy of the people involved, the changes in their lives and the precariousness of our lives, which leave us little room to participate and collaborate in any cause or civic initiative.

In the world of prostheses, there is a very high level of technological evolution, with more and more advanced prostheses, but also more expensive and not covered by social security. We are also in a context where big companies are looking for market niches, but they do not involve users in the decision-making process, so they make very advanced prostheses, but they have not really asked people what they need.

What projects are you currently working on?

Jorge Sánchez: “An instrument for Henar” will be part of a meeting on music, functional diversity and accessibility in spring 2024 in Cuenca. Within the Divers+s project “diversity as innovation”.

CeLeO is currently developing a project of Ukrainian-Spanish communication boards to facilitate communication for war refugees. This necessary initiative will be developed for other languages as well.

In addition, as director and producer, we are filming the documentary “Kilimanjaro. The importance of the moment” which shows the recovery after cancer and how to transform this situation into a vital project: climbing Kilimanjaro.

Miguel Ángel Rubio López suffers from sarcoma and after a complicated operation, his surgeon warns him that it will be difficult for him to climb stairs. Realising the importance of the moment, he set the score at zero to face the recovery. Little by little, as he felt better, he set himself new challenges. His project, to reach the summit of Kilimanjaro, for which he will train by climbing some of the highest mountains in Spain. In these ascents, Miguel Ángel will be accompanied by personalities linked to the fight against cancer, his illness and his recovery.