HI: WHY THIS ALL LOOKS AND MOVES THE WAY IT DOES
This work-research-exploration is practice-based.
It is practice-based research at a time when I was losing my known-to-me practice.
It is practice-based research and place-based research.
It is bedbound and housebound observations and explorations.
It is a bed telling... a room telling... a house telling of creativity.
Losing it and it not letting go and living inside of this hurtful, lost, meaningful, clumsy, experimental, loving place.
The creativity of the unstable and of the not known and of the uncontrollable.
It is following the creative bodymind as spaces and places and voices of expertise and evidence.
The sharing of this following is through audio-videos.
My voice tells each chapter.
A large text follows each word on the screen.
Most chapters and their episodes have diagrams and visuals to support the sharing and to support me with the telling.
In the early years of this work-research-exploration... I was unable to read and be with page words. So I relied on generous video interviews and recorded lectures and readings to follow the main voices you'll find throughout. Subtitles and moving transcripts... options to slow down the audio/video so I could follow along at my own pace... only listening and not watching when I couldn't be around too much light gave me access to so much telling and sharing I otherwise could not have spent time with. I wanted to create this work with this accessibility option as its main sharing and telling expression. I discovered I couldn't, on my own, cover every way of making this accessible. So this is my main way of communicating and connecting as accessibly as I can right now. Please follow along with your own needs and/or preferences.
The audio-videos are made through my accessible second practices.
Diagrams are used most when I couldn't communicate the ideas through only words.
Or I couldn't write or talk at all when I was forming the ideas and used diagrams to share with myself.
They are used as bridges between my brain and mouth and between us, so I can best share the ideas.
Each one began as a finger drawing on my phone, details layering over time.
A lot of the writing came from these diagrams.
My ideas held in them for months or years until words and the energy for writing could catch up.
When I could write, I wanted to use my sick voice.
Informal, tired.
And to talk with you more like a conversation.
The audio was recorded on my phone over a year and a half.
Sound changes because space changes: beds, cupboards, living rooms.
Sometimes a single chapter will have different years and spaces tacked together.
You'll be able to hear when this happens.
Sometimes words and terms are repeated and layered over sentences, paragraphs and chapters.
Hyperfixation of language dictating a kind of rhythm.
Sometimes my voice moves and sounds more tired than other times.
Sometimes there was no energy left for talking at all, so there is some sharing that is only words, no audio.
Sometimes my spoken words will not match the written text on the screen.
My dyslexia is braided through each video.
The written words are the ones to follow.
I have what I call "tense-dyslexia" too; it will switch based on feeling and connection to memory.
I didn't want to cut any of these "sometimes" out and scrub them away from the experience of sharing.
I want all disability to be part of the work that is talking about disability.
So... the exegesis itself is a living prototype of the ideas explored in the work-research-exploration. A research space where illness and disability lead and where the question, "what does it really mean to be doing how you need to be doing in your own ways all of the time?", is embedded not only in the research project, but in the sharing of the work itself. A form of sharing that is exploring Disability as Method in both industry and institutional research and authorship.
The exegesis slowly moves through the experiences that lead up to the experimentation with second practice, inspired by an idea of Alison Kafer's she shared in a Q&A session after a recorded lecture: "[...] disability studies as a discipline in the academy has still not done enough in radically shifting our ideas and understandings of what it means to generate knowledge, what counts as knowledge, and questions of pace and movement and stillness are huge dimensions of that" (2018).
You can take the long way through or you can move right to second practice exploration and move in and around as you'd like.
This space is an invitation to think with and share differing ways sustainable creativity, academic research and the doing and sharing and telling of this creativity and research can be made more accessible both for an audience and for the creator, for the researcher.
Thank you for spending time with it.