Exploring the experience of chronic illness and disability through music for voice, saxophone, and synthesizer with wearable handmade controllers.
Patien(t/ce) is a set of musical compositions and poetry that explore my experience as a chronically ill and disabled person, a system of DIY electronics for controlling my synthesizer in performance, and a collection of handmade garments and objects that speak to my experience of disability.
The music incorporates sung and spoken vocals that are processed and controlled with biofeedback from wearable sensors and mixed with other synthesized sounds. I am exploring how writing words, then disrupting and recombining them, can express the feeling of living in a disabled body. I am interested in how durational performance breaks past surface-level engagement with music and prompts close listening and deep connection. My goal is to create a performance that is expressive, vulnerable, and ecstatic, leading to an experience of catharsis for the audience and for me.
I have designed and built several controllers so far: A left knitted glove with a gyroscope, pulse sensor, and flex sensor, right knitted glove with a gyroscope, and a woven basket and felt balls with a gyroscope and a piezo sensor that measures vibrations as the balls move inside the basket, a pair of socks tethered by a knitted stretch sensor and with a piezo sensor in the heel, a bib with touch sensors and pulse sensor, and a crocheted pressure sensor button. I dyed the fiber used in the controllers in blacklight-reactive colors. I knitted the gloves and socks. I spun wool fiber to achieve a coarse yarn, and wove it into a basket with handles, then felted balls to fill it. I programmed the Arduino microcontrollers and assembled the electronic components, covering them with yarn and sewing them into the gloves and basket.
The controllers communicate over WiFi to my laptop, which processes the sensor data and sends it to my Eurorack synthesizer in the form of control voltage, which I use to modulate various effects on my voice. In the future, I plan to build more controllers and to finish building a DIY Eurorack module that will take the place of my laptop for processing the sensor data.
I began work on Patien(t/ce) in 2023 after healing from three spine surgeries in two years and developing several invisible illnesses. The timing of this work reflects a dramatic turn from possessing seemingly unlimited ability to being severely limited by my body. A defining quality of being sick is that time stretches out, as long periods are spent unable to participate in the world. Being a patient quite literally requires patience. Patien(t/ce), with its various paths of creation, is well-suited for development during illness flares. On any given day, I usually have the energy to at least knit a little, sit at the spinning wheel, or write some words in my notebook to prepare for the next performance.
Patien(t/ce) was generously supported by a 2024 Rubys Artist Award.