CHAPTER FOUR
Part Five
Work(ing) contortions
The metaphorical motif of bended, contorted bodies is a persistent image in the illness and disability community tellings of experience with normative-body systems of creativity within creative industry and institutional practices... our language exposing invisible embodiminded experiences of effective and affective inaccessibility.
"I'm constantly folding myself into uncomfortable shapes, because we built this world around able-bodied people" (Bunting, 2021).
An autistic academic describes his everyday experience in normative-body work environments as " [...] often result[ing] in overwhelm as my brain feels like it's having to reach a little bit too far to cope with the process" (Bailey, 2022).
"To crip something is to bend, compress, twist, subvert, and imbue disabled wisdom into systems, institutions, and cultures... it takes a tremendous amount of emotional and physical labor to crip the world" (Wong, 2024).
The experiences of second practice translation create an unnecessary place of instability between primary (production cycle) and secondary (individual second practices) modes of making and imposes affective and effective dissonance, rupture for practitioners living with impairments, illness and disabilities (Figure 1).
Figure 1. Complex duality of professional creative production
In her essay, Time Harms (2021), Margaret Price says that to genuinely stop "disparities between disabled and non-disabled life" (p.257), that we must not only look to the experiences of the individual disability to inform ideas of accommodations, but that we also need to focus on the specific "relations, systems, objects and discourses" bodyminds with disabilities are surrounded by; the space of crip time (p.258). Crip spacetime is a theory and lens of Price, which adds further to Alison Kafer's theory of crip time, exploring how "time is part of a material-discursive field through which bodyminds are sorted" (p.258).
Through their research of work and disability, Price surfaced a common everyday experience she calls "bodymind events" (2016). Bodymind events are "the sudden emergence of a debilitating breakdown or loss of capacity", "a sudden debilitating shift in one's mental corporal experience" (2016). These are directly caused by the situated affects and effects on an individual, their disabilities and their environment.
Price gives these examples of a bodymind event. They " [...] might include a panic attack, being suddenly exposed to a toxic chemical or fragrance, abruptly realising that an interpreter is not interpreting accurately, or hitting an unseen bump with one's wheelchair and flipping over frontwards" ( Price, 2016).
As a system and environment, the design cycle can trigger bodymind events to occur, emerge and continue to develop becoming disabling. The cycle of design is not only triggering my bodymind impairments, but is also creating unique and specific disability events for my bodymind.
A bodymind event experience that comes to mind for me happened in 2019. I was experiencing debilitating bodymind sensory effects because of an open office environment, a common workplace designed for design studios. These bodymind events exacerbated physical and cognitive impairments. They were becoming too much to hide and too much to exist with every day. Every sense was overwhelmed and my body and my brain were drained. My nervous system and immune system broke down. My body was inflamed. Migraines, joint pain, chest pain, hospital visits. I am either at work or in bed. I start to disappear.
After around seven months of trying to push through, my doctor said I would have to leave my job. I couldn't afford to leave my job, like most people can't afford to leave their job. And I was enjoying the work.
First, I asked my workplace if I could go part-time, but that was not possible in my role. Then I asked if I could work from home two to three days a week due to physical reactions I was having with the environment. It was the first time I semi-disclosed chronic illness in a workplace. At this time, people with children are welcome to work from home for two to three days a week. Working from home did occur. My manager was very supportive of the idea. The company, not so much. There were forms to be created. Then there were forms to be filled out and to be approved. A photo shoot of a pretend office set up that matched the HR boxes that needed to be ticked. A fire blanket purchased and also photographed. It was over a month of discussions and proving and waiting. My colleagues with children, who were granted working from home automatically as part of their contract, did not have to go through this process. Seven months later in March 2020, the same company made it possible for one hundred and fifty plus employees to work from home overnight, once the Melbourne COVID-19 lockdown was announced.
Margaret Price calls the pace in meeting time sensitive disability accommodations at work, the Slow System (2016). I know, named after my beloved shining armour: slow. In this systemic context, slow refers to the unknown gap of time between a time sensitive disability need and the processes of these needs may be being met. Slow here is differentiated between the needs of individual pace and the speed of movement of workplace processes and systems; the too long of waiting to be structurally accommodated. Too long is the process of applying for, proving and being granted accommodations. Too long is the time it takes for the accommodations to be put in place. Feedback and iterations of the accommodations are time consuming. The accommodations can be energy and financially costly to prove also, needing doctors and specialist notes to support the accommodating needs. I know this cost has often affected my side of this process too.
Price talks about how people often know, through previous experience, of the Slow System and so take on the labour cost and responsibility themselves. I call these second practices also. Each of these entangled lines are additional physical, emotional, cognitive and practice labours that bodyminds with any kind of needs outside of the centred design system have to carry out themselves.
The more some of us are made to rely on and therefore translate our second practices... the more we are stretching ourselves physically, cognitively and emotionally.
Second practices are also additional second labours.
Some people have second labours of living and working with their everyday unseens.
Additional labours that are not acknowledged.
Additional labours that are not designed for.
Additional labours that become additional costs. Additional labours that are not paid for.
Unseen means unpaid.
When additional unseen labours of multiple practice translations become impossible and accommodations cannot be made, or are too slow in being made, bodyminds are now fully excluded from the design system. Practitioners are pushed out from industry because they're unabled to live within inflexible workplace and design system expectations and with the additional labours on bodyminds living with impairments.
This has happened to me with every professional creative role I have had. I become so disabled by the system I have to leave.
For over fifteen years, I practiced within the design space. I lived within the "well" bodymind expectations of design culture. I felt I had to hide my bodymind from colleagues and workplaces. I once left the design industry for four years. I was less overtly symptomatic and could be outside of my house more. But I missed my practice and my community and my creativity. So I went back. And I have had to leave two more roles since.
Unfortunately, this experience is not unique and the spectrum of those affected is diverse and complex. "What happens to your creativity and career when you can't push through?" (Dore, 2017). "How can a creative career be pursued if your industry leaves you behind? How do you decide if the consequences of working jobs that are not sustainable for your body are worth it?" ( Spring, 2020). When working in the design industry there is a distinct systemic lack of considered flexible participation options and support for experiences that fall outside normative health, normative practice. As a result, many disabilities and acute chronic impairments and systems are inflamed (Dore, 2017). It shouldn't be a binary either-or ultimatum of care and support or illness, suffering, not working.
"You know, when I have my access needs met I'm functionally not disabled, you know?.... My body doesn't oppress me - my body, my body's fun! But society - that can be incredibly oppressive" (Berne, 2017).