CAST / ENG

El Diseño del Mes:​

Un instrumento para Henar

Henar es una chica con mucho gusto por la música y que padece encefalopatía cetósica, lo cual hace difícil el uso de instrumentos convencionales. Pero esto no le ha impedido obtener una formación musical y tocar en una orquesta. El proyecto ‘Un instrumento para Henar’ tiene como objetivo el desarrollo de un instrumento musical MIDI adaptado, y Autofabricantes ha colaborado en su diseño y fabricación para que no sólo Henar pueda tocar sino para que el sistema final sea modular, de cara a fabricar nuevos instrumentos personalizados adaptados a distintas necesidades de otras personas.

Hablamos con Francisco Díaz, coordinador e investigador de Autofabricantes, y con Jorge López del Centro CeLeo, promotor del proyecto.

Henar tocando música

¿Cuál fue el punto de partida y principal objetivo que llevó a crear este instrumento?

Jorge Sánchez: La creación de este instrumento parte del amor de Henar por la música, de su necesidad de tocar y formar parte de una orquesta.

Henar tiene un compromiso motor muy grave y esto la enfrenta a desafíos comunicativos que limitan su acceso social. Para poder comunicar utiliza un Comunicador Dinámico, un Sistema de Comunicación Alternativa y Aumentativa, con salida de voz, que es muy lento.

Cuando empezamos con el proyecto, Henar tenía 14 años y sus relaciones sociales, fuera de su entorno familiar y asistencial, eran muy frugales y básicas. En esa época, Henar tenía una motivación muy alta para aprender e interpretar música, llegando a componer alguna canción con Sibelius (software de edición de partituras). Estaba recibiendo clases de música adaptada en la Escuela Municipal de Música y Artes Escénicas «Ismael Martínez Marín» de Cuenca.

En este contexto, nos proponemos hacer más accesible la música para Henar, creando un instrumento con el que pueda orquestarse y disfrutar de la creación colectiva.

Nace «Un instrumento para Henar» de forma accesible y que siempre está dentro de la tonalidad, no es sólo un instrumento de música, es una herramienta de socialización. Además, queríamos que fuera replicable, en código abierto, para que otros interesados pudieran construirlo. Y, por último, que fuera asequible, que su precio no fuera una barrera para quien quisiera disfrutarlo.

¿Cuál fue el mayor reto al que os enfrentasteis a la hora de sacar “Un instrumento para Henar” adelante?

Francisco Díaz: El principal reto era integrar en el diseño las necesidades técnicas y de Henar. Por una parte, encontrar la tecnología de electrónica que proporcionase calidad musical, fácil de programar y económica. A su vez tenía que permitir añadir la modificación e integración de los botones, etc. 

En la parte de diseño físico teníamos que conseguir integrar todos los cables, electrónica, etc., adaptarnos a las necesidades de forma y dimensiones de Henar y que además fuese modular y transportable.

El instrumento ha evolucionado en diferentes versiones con el objetivo de mejorarlo y adaptarlo, ¿en qué punto está ahora el proyecto y cuáles son los próximos pasos?

Francisco Díaz: Ahora está acabado el Henar #4, es una versión mucho más ligera que la #3, a nivel técnico-musical es similar pero en el diseño hemos conseguido sustituir las maderas rígidas por telas que integran unos nuevos botones flexibles y blandos. Pasamos de un prototipo duro a uno textil.

Vuestro proyecto de investigación colectiva busca generar soluciones alternativas y accesibles en torno a la diversidad funcional, ¿cómo nació Autofabricantes y cuál era entonces el principal objetivo?

Francisco Díaz: Aunque el germen estuvo en un proyecto matriz llamado EXando una Mano en Sevilla, Autofabricantes nació en Medialab Prado [hoy llamado Medialab- Matadero Madrid] en 2015 como proyecto para desarrollar entre un grupo de ciudadanos una prótesis mioeléctrica de brazo para niño. 

Esto suponía un desarrollo de electrónica, sensores, motores y diseño de integración muy compleja. A esta primera llamada y reto se sumaron 29 personas de diferentes ámbitos de conocimiento, incluidas familias que aportaban su experiencia. Después se consolidaron los grupos de trabajo específicos y se fueron añadiendo más personas. En total, en este primer proyecto han colaborado más de 50 personas, aunque no hemos conseguido acabarlo.

¿Qué impacto positivo en los diferentes niveles véis que tiene el uso de estas prótesis en el día a día de un niño o adulto?

Francisco Díaz: Durante estos años hemos podido ver muchas mejoras en diferentes aspectos. El principal tiene que ver no solo con la autonomía sino con la autoestima. Las niñas y niños que participan en los talleres y proyectos ven un grupo de personas que escuchan, acompañan y piensan en sus problemas concretos para poder solucionarlos. Se crea una comunidad de confianza que aporta soluciones y red de apoyo. 

Además con cada prótesis o gadget que vamos haciendo, las niñas y niños pueden solventar actividades cotidianas que mejoran su autonomía pero también cambiar una perspectiva de su diversidad o brazo faltante; de un elemento a esconder, pasa a ser un diseño a mostrar y sentirse orgulloso por haber participado en su diseño. El impacto lo estamos midiendo en los últimos años mediante estudios clínicos basados en estándares de la OMS y evaluado por comités de ética.

¿Cuáles son las dificultades a día de hoy y el panorama actual en el mundo de las prótesis?

Francisco Díaz: Hoy en día para proyectos de este tipo el problema es la financiación y la dificultad en conseguirla. También cuesta mucho profesionalizar los proyectos o mantenerlos vivos a largo plazo, por la energía de la gente que colabora, los cambios vitales y las vidas tan precarias que tenemos y que apenas nos dejan margen para participar y colaborar en cualquier causa o iniciativa ciudadana. 

En el mundo de las prótesis hay una vía de evolución tecnológica muy alta, con prótesis cada vez más avanzadas pero también más caras y no cubiertas por la seguridad social. Además, estamos en un contexto con grandes empresas buscando nichos de mercado pero que no incluyen a los usuarios en las tomas de decisiones, por tanto, hacen prótesis muy avanzadas pero no le han preguntado a la gente realmente qué necesitan.

¿En qué proyectos estáis embarcados ahora?

Jorge Sánchez: «Un instrumento para Henar» formará parte de un encuentro sobre música, diversidad funcional y accesibilidad para la primavera del 2024 en Cuenca. Dentro del proyecto Divers+s «diversidad como innovación».

En estos momentos, CeLeO está desarrollando un proyecto de tableros de comunicación ucraniano-español para facilitar la comunicación a los refugiados de guerra. Esta necesaria iniciativa se desarrollará también para otros idiomas.

Además, como director y productor, estamos rodando el documental «Kilimanjaro. La importancia del momento» que recoge la recuperación tras un cáncer y cómo transformar esta situación en un proyecto vital: subir al Kilimanjaro.

Miguel Ángel Rubio López, sufre un sarcoma y tras una complicada operación, su cirujano le advierte que le será difícil subir escaleras. Comprendiendo la importancia del momento, puso el marcador a cero para encarar la recuperación. Poco a poco, según se iba sintiendo mejor, se marcó nuevos retos. Su proyecto, llegar a la cima del Kilimanjaro, para el que se entrenará subiendo algunas de las montañas más altas de España. En estas ascensiones, Miguel Ángel, estará acompañado por personalidades vinculadas a la lucha contra el cáncer, a su enfermedad y a su recuperación.

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