I often feel like an asshole when advocating for myself in a healthcare system designed against me. I feel like I’m friction in someone’s day, a discordant note in their lives, extra work during chronically busy times. My needs challenge the usual way of things.

It is such a relief when I get to say nice things. It’s nice when someone validates and accommodates my needs using what power they have. These moments feel like recognition that: “Those who are the most sensitive and traumatised and have not lost the ability to extend trust constitute an enormously rich and diverse repository of insights and hold many of the keys needed for co-creating ecologies of care.”

I replied to a helpful kindness from a healthcare worker with this:

Thank you for doing what you can to help me get care. Much appreciated. As a hypersensory, multiply-neurodivergent person with an agonizing neuromuscular disease, I need specific modalities of care that are often suppressed, like text communication. I often feel excluded from care. Thank you for working to include me.

I’ll leave you with some lines celebrating care work:

• Care work makes all other work possible.
• Putting care—not just care work, but care—at the center of our economy, our politics, is to orient ourselves around our interdependence.
• Care is an organizational structure needed to keep our nation running. It’s, by definition, infrastructure.
• Health is at the center of the human experience.
• We need a counterculture of care.
• I feel that that the fundamental property of humanness is to fill those spaces where humanity has been abandoned with love. Those who would change the system have to begin with love, and with the vision to build geographies of care built from that love.
• We can start building more accessible, care-centered communities now. We can combat ableism now. We can lay the groundwork for a world that works better for all of us.

For further celebration of care, visit our “Care” glossary page.