This is 5 years - On Living & Learning

This is 5 years of living with Long COVID, of surviving this ableist capitalist hellscape with Long COVlD. I am full of both joy and rage. Cheers to my kin who know this in their bones.

There are joys that exist because of my disabilities – not in spite of them. We call this disabled joy. Yes, disabled people can live a joyful and healthy existence. There are caveats. Severe MECFS destroys many of these possibilities. Legislated poverty that the majority of disabled people are subjected to also steals joy possibilities. State and police violence and policy end disabled lives regularly – especially Black and Indigenous disabled people. Yet, even in a world so regularly trying to end our disabled lives pre-maturely, there is joy. Joy sought out intentionally, as resistance. Joy that sneaks up on us. Certain joys only we experience with ourselves, with eachother. Joy that comes from our perspectives and experiences. And just around the corner from joy there is rage. Righteous disabled rage for the norms that lead to our further disablement and deaths. For the normalized, built, seemingly never-ending barriers to getting our basic needs met, let alone having possibilities for thriving. Rage for the ways we are intentionally pushed aside and down, abandoned as disposable, as less than. Rage for the dismissal of our expertise and knowledge, our stories and our dreams, our prophetic vision. Rage for all the ways we are exploited, dehumanized, and discarded. I live authentically as both joyful and rageful.

Disabled Joy and Rage: a non-exhaustive list

– Time with my spouse and the love of his caregiving. Our everyday is connected and together – joyfully. Fuck you to people who ask how my marriage is doing as soon as I am visibly disabled. Fuck you and your invasive questions implying my existence as burdensome or worth leaving.
– Decorating my wheelchair! Cleaning and caring for it, too. What a joyful privilege. Fuck you who label mobility aids as giving up or living less fully. My chair is freedom. Aim your feelings at making the world more accessible for wheelchair users.
– Noticing the ways sun shines through the window; how it changes over a day, over a season. My heart is made lighter. Fuck the rat race that steals quiet joy from everyone.
– Observing birds, insects, animals while laying down. Just looking makes me more alive. Fuck being upright.
– Being regularly eye level with the kids. The joys of meeting them at their level are boundless. Fuck all of us adults who expect children to get in line; who demand obedience, compliance and ignore that children are whole people already. They are not here to serve us and our egos.
– Going slowly, taking my time. We’re onto something important. Fuck the rushing and asking me to be different than my body allows (including the ways I ask this of myself.)
– Laughing and sharing jokes with disabled friends that only we can understand. Healing in this sharing. Fuck all the overt & subtle, interpersonal & structural, intentional & well-meaning ableism.
– Seeing the world in ways informed by my disabled experience. My perspective enlightens. Fuck you for not listening and believing us. Disabled people know what we need.
– Deeper understanding of interdependence and connection. Goodbye disconnect! Fuck you who make yourself scarce and leave; who talk bullshit about things you don’t know; who refuse to face your own fears, discomfort, and dysfunction at the cost of disabled relationships and lives.
– Learning how to hear and listen to my body and its needs. Why hello there, long lost love. Fuck all the ways we’re taught and expected to ignore what our bodies are screaming.
– Watching things unfold and develop. Bread rising. Children growing. Plants budding. Seasons changing. The essence of life. Fuck the norms that underappreciate these vital moments.
– Deep appreciation for the small, simple, seemingly mundane and routine. Routine can also be ritual. Fuck all the exploitation and hyperindividualism that makes the everyday a chore.
– Well-developed skills of planning, pattern recognition, dreaming and scheming. Dreaming better into being for us all. Fuck you, capitalism, for all the ways you demand these be commodified; for how you operate through others suggesting these skills be used for “work”, and not for surviving and thriving together.
– Visceral understanding of grief+joy co-occurring. The painful beauty of existence. Fuck the rhetoric that I have given up, am negative, don’t have hope, and can only either be inspiring or pitied. Fuck the ableism that flattens my humanity.
– Presence, living in the moment, reflection are my way of life. What a good way it is. Fuck all the time I lost trying to achieve a standard I never could; to barely surviving; to generational trauma and norms that set me up to fail at honoring myself.
– Finding ways to do things that are accessible for me; meeting myself where I’m at. I deserve it and so do you. Fuck you who call this not trying hard enough.
– My existence is ripe with anti-capitalist possibility. Burn it down! Fuck productivity culture and the capitalist death cult.
– Loving myself and my body in deeper ways, in an ongoing process. What a joy to know and love thyself all the more. Fuck all the ways this world calls me unlovable, disposable, and forgotten, when I know more than ever I am beautiful, essential, and deserving of care.

I am worthy of living well, abundantly, JOYFULLY as a multiply disabled, whole human. May it be so.