CHAPTER TWO

In late 2020, I am in solitude with... in bed with... laying with... thinking with...  

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I begin following Tumblr disability and crip communities for emotional support and a crowd of the same. For small sentenced honest experiences I cannot yet put into words. To learn from and for comfort. Instead, I am radicalised in my bed within a few days. 

#spoonies

#neurodivergence

#potsie

#cripplepunk

#invisibleillness

#chronicallyill

#disabilitypride

#caneuser

#madpride

#queercrip

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My feeling of becoming enveloped into the disability and crip community is the same sensation of when I was first exploring my queer self and community. My queer community was so visceral. I thought this was because it was so outside in the world. Twenty years later, I am finding the same intensity of community alone in my bed through gorgeously open and messy and generous sharing of experience in motion.

There is the sharing of lived experiences of medical model failures. Everyday ableism. Struggles for financial support aid. Conversations and concerns and questions for using mobility aids if you are an ambulatory user of canes and wheelchairs. Advice for relationships of disabled and non-disabled couples; love and sex and money and exhaustion. Discussions and the sharing with incredible detailed breakdowns of how the rise in Long COVID cases may bring long needed research funding to post-virus illness and disabilities. People sharing how they don't think they can continue living with chronic pain, chronic fatigue, chronic illnesses. People sharing dos and don'ts of how to approach their wheelchairs. People sharing cripple punk modifications to their mobility aids; rubber spikes on handles of wheelchairs to express independence and personal boundaries. People creating and sharing comics of their experiences. People sharing new diagnoses. People sharing traumatic experiences of trying to get diagnoses. People sharing links to more voices within the disability community. As a place of community and research, L calls it a kind of "peer review" as a research source, which I love.  I keep my own quiet place of reblogged voices.

I have thought a lot about including so many of them in this project because of how meaningful as a support library of lived experiences and information and catalyst this community was to opening me up to disability justice, disability theory and crip theory. But I want to keep their voices in the online space. They have not shared their experiences to be excavated as evidence in an academic environment. I do want to say that these voices are in the DNA of this work, in my thinking and in every move I have made that connects to agency. This community is how I find some of the voices and work that thread through my work. I meet them through links to essays and lectures and interview videos in my bed from others' beds and bedrooms.

Johanna Hedva's essay, Sick Woman Theory (2016), is another big change in me. I find their words in my early hunting for the places where illness and agency and research and bodymind and self-advocacy exist together. I download the PDF. I read the first two paragraphs and my cognition flatlines. Collapsed and exhausted. I can't read anymore. I am in awe and in comfort with this piece of writing. I want to spend time with it... but I know it will be weeks until I can try reading it again. In bed, on my phone, I search for more accessible options to experience the words. Maybe a small video interview with them talking about Sick Woman Theory or somebody else discussing the ideas? I'm so very lucky. I find a video on YouTube of Joanna Hedva reading out the entire essay. They move slow to a small stage. They use their cane. They bring a friend for emotional support. They sit very close together.

 I didn't know you could do this. I didn't think you could be your fragile self in front of people when sharing ideas. I didn't think you could say you needed things when sharing ideas. This changes my sick heart and sick work forever.

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In a part of Sick Woman Theory, Hedva talks about her experiences of bed resistance. For those of us with bodies who cannot join marches, who cannot participate in the physical normative publicness of resistance: "If being present in public is what is required to be political, then whole swathes of the population can be deemed apolitical simply because they are not physically able to get their bodies into the street" (2016, p.1).

 My own experiential tensions with disability and resistance are shared here. It is an incredible gift. Sick Woman Theory is a space filled with intersectional spaces of empowerment, sorrow, rage and power positioned alongside the normative world of the "well", the medical industrial complex and capitalism.  It is the first time I see bodymind vulnerability as a fist in the air. It is the first time I see the feminist act of "care" used as a term of resistance within the disability space.