Care web

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A care web is a system in which people support each other through reciprocity. They differ from charitable care models in which people with disabilities only receive passive care. Webs are best monitored by the needs and wants of team members to ensure that their needs are adequately addressed. - Leah Lakshmi Piepzna-Samarasinha [1]

“...we shared tools, wrote poetry, and created friendships. SDQ folks regularly mailed each other meds and extra inhalers and adaptive equipment. We shared, when asked, information about what treatments worked for us and what didn’t and tips for winning a disability hearing. We crowdsourced money for folks who needed to replace stolen wheelchairs, detox their houses, get living expenses together for rehab, or get out of unsafe housing situations. People sent care packages and organized visit teams for members they might never have met in person who were in the hospital, rehab, or the psych ward.” - Leah Lakshmi Piepzna-Samarasinha, page 26 of Care Webs: Experimenting in creating collective access [2]

Questions to ask when starting a care web [3]  :

  • What is the goal? Who needs care and what kind?
  • Who is in it and what are their roles? (Caregiver, receiver, both)
  • How does it resist the charity model?
  • What are the best practices for the person receiving care to receive it well? What about practices for the person giving care to give care well?
  • What resources are needed to make access to care work? 
  • How will we celebrate and make care fun?
  • How will we build time off when people need it?
  • What meeting structure do we need to check in? Also remember to check in on power dynamics and underlying feelings which could include, for example, guilt, expectations, race dynamics, internalized ableism etc.) 
  • Are we building in ways for disabled people to offer care too?
  • What's the plan to deal with conflict when it arises?

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