Pelenakeke (Keke) Brown is a Samoan, afakasi, disabled, queer artist. Her work is rooted within the Samoan concept of the ‘va’ or ‘in-between space’ and she is always interrogating the relationships amongst the in-between spaces that we each inhabit. Yo-Yo Lin is a Taiwanese-American, chronically ill media artist who explores the possibilities of human connection in the context of emerging technologies.
The Resilience Journal is a tool dedicated to visualizing the overlooked, soft data in our lives. I created this journal as a means of tracking my illness experience in a way that felt more representative of how I experience chronic illness. Soft data (as opposed to hard data) is nuanced, fuzzy, qualitative, expressive– this is something I see very little datasets of when it comes to illness.
For the year of 2019, I have been tracking 7 different dimensions of my illness every day: Feeling it (chronic pain), logistical problems, body image, social pressures, doctor’s visits, future visions, and past memories. I have been doing this as a means of holding space for illness— giving it a consistent, ritualistic place to be honored for what it is in its wholeness— while also considering how this could be used as an advocacy tool.
Over the months, I have been giving prototypes to friends with chronic conditions, getting feedback, giving presentations, and holding journaling and movement workshops for the chronically ill and disabled. In these workshops we would use the journal as a framework for conversation, active listening, and creative expression with our bodies and minds. I began to realize that the journal served more than just a personal tool for myself to keep track of the nuances of living with a chronic condition– it became a collective access point for acknowledgement and self-acceptance– giving people a tool to put into words, images, and ritual their complex living experience on their own terms.
The Resilience Journal is designed to illuminate the ill/disabled experience, make space to honor pain, and hopefully over time, become a living data archive of acts of resilience by chronically ill and disabled bodies.
A collection of black-out poems that reveal new narratives within her medical archive that exist as choreographic scores