Leah Lakshmi Piepzna-Samarasinha defines care webs as Informal networks of disabled people and nondisabled people who provide care for one another. In contrast to charity models, which are characterized by power imbalances, care webs involve reciprocal relationships in which interdependence is highly valued. Many disabled people are networked with one another already through formal organizations, informal community networks, and on social media. What I found in my research is that people in these networks became spontaneous care webs for communities during Winter Storm Uri. The Deaf community, for example, were very organized in checking on one another and even distributing water immediately following the crisis. Blind people also showed up for one another in really remarkable ways.
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What does it mean to shift our ideas of access and care (whether it’s disability, childcare, economic access, or many more) from an individual chore, an unfortunate cost of having an unfortunate body, to a collective responsibility that’s maybe even deeply joyful?
What does it mean for our movements? Our communities/fam? Ourselves and our own lived experience of disability and chronic illness?
What does it mean to wrestle with these ideas of softness and strength, vulnerability, pride, asking for help, and not—all of which are so deeply raced and classed and gendered?
If collective access is revolutionary love without charity, how do we learn to love each other? How do we learn to do this love work of collective care that lifts us instead of abandons us, that grapples with all the deep ways in which care is complicated?
Piepzna-Samarasinha, Leah Lakshmi. Care Work: Dreaming Disability Justice (p. 33).
In the face of systems that want us dead, sick and disabled people have been finding ways to care for ourselves and each other for a long time. As Vancouver’s Radical Access Mapping Project11 says, “Able-bodied people: if you don’t know how to do access, ask disabled people. We’ve been doing it for a long time, usually on no money, and we’re really good at it.” Sometimes we call them care webs or collectives, sometimes we call them “my friend that helps me out sometimes,” sometimes we don’t call them anything at all—care webs are just life, just what you do.
The care webs I write about here break from the model of paid attendant care as the only way to access disability support. Resisting the model of charity and gratitude, they are controlled by the needs and desires of the disabled people running them. Some of them rely on a mix of abled and disabled people to help; some of them are experiments in “crip-made access”—access made by and for disabled people only, turning on its head the model that disabled people can only passively receive care, not give it or determine what kind of care we want. Whether they are disabled only or involve disabled and non-disabled folks, they still work from a model of solidarity not charity—of showing up for each other in mutual aid and respect.
Piepzna-Samarasinha, Leah Lakshmi. Care Work: Dreaming Disability Justice (p. 41).
If these care webs are going to keep working, a paradigm shift needs to occur in those friends’ heads. They need to see the disabled people they’ve blanked out on listening to for years when we’ve been trying to talk about access or our lives. (An apology might be cool, too.) They need to understand that their friend isn’t a special cripple, cooler than the rest—that the problems they’re facing aren’t individual ones but systemic struggles that face all crips and need collective solutions. They need to ask themselves why they have systematically refused to value or take in what disabled folks around them have been and are saying. They need to listen and learn from the care work and skills disability communities have been doing for years—and maybe offer some compensation for that knowledge. Or at least say thank you.
Piepzna-Samarasinha, Leah Lakshmi. Care Work: Dreaming Disability Justice (p. 54).
