Care web

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

“...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

Disposability discourse	Much discussion around the severity of COVID was lessened by expressing how it mainly sickens and kills elderly, chronically ill, and disabled people. This discourse suggests these groups are seen disposable.
Loosened restrictions too early	When governments loosened COVID restrictions in response to business demands, political pressure, and public impatience, rather than scientific evidence, high risk populations (the chronically ill, disabled and elderly) were subsequently told they are disposable yet again.
Working through illness	Regulations around how many sick days should be required when someone falls ill with COVID also demonstrated ableism. In relation to these regulations, and in favour of profit above health, many politicians including US President Joe Biden, praised themselves for working through COVID, instead of encouraging people to rest and recover if they'd fallen ill.
Individualism	Individuals have been encouraged to make 'personal' choices on vaccines, masks and gatherings. "There is no individual safety without collective safety and collective safety requires that no one is safe unless everyone is safe." - Mia Mingus

Questions to ask when starting a care web  :

• 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?

If you have any suggested revisions or additional resources to share related to the above content, please email them to kenzie@lehub.ca.

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