Care Work: Dreaming Disability Justice

Summary, part 3

Care Work in Action

Loree Erickson’s Care Collective

Loree Erickson began her care collective because she was not given adequate funds to pay for a caregiver. When she had previously hired a caregiver, Erickson’s sexual identity was not respected, and she experienced homophobia from her caregivers. Erickson created a friend-made care collective as a survival strategy to give and receive necessary care, like being transported from her wheelchair to the bathroom or her bed. Erickson’s care collective, which had the same result of many care webs, was a method that worked well for her but relied heavily on people who loved her, her friends.

This model radically rewrote the care she received because Erickson previously could not receive care without being seen as a chore. The care instead becomes beneficial to both receiver and giver since Erickson (receiver) gets the care she needs, and someone else (giver) can laugh and enjoy Erickson’s company. 

Erickson’s intersectional identities as white, extroverted, and neurotypical aid her in this care model. However, people should not have to rely on being liked/loved by a community that would create a care collective to have the right to use the bathroom. Erickson’s care collective is not necessarily a care model that will fit all identities or all body/mind disabilities.

Creating Collective Access Detroit, June 2010 - June 2012

Creating Collective Access (CCA)  was a crip-femme-of color-made initiative dedicated to making sure a Detroit conference was accessible. CCA allowed people to find access together instead of having access be an isolating task that one has to navigate independently. Here, access is more than one ramp to enter a building. As the CCA, they made accessibility demands met (e.g., getting conferences to have fragrance-free soap). As a group, they can get through long conferences together by, for example, walking at the pace of the slowest member. The CCA was rooted in intersectionality to create organizing that did not leave any aspect of someone’s identity behind; to form a space focused on BIPOC disabled individuals caring for each other.

CCA Bay Area

The CCA in the Bay Area was an attempt to bring a care collective, similar to the one used for the conference, into everyday life. There were difficulties with this model because not every disabled person in the group advocated for the help needed. Intersectional identities may make it harder for people like women or femmes of color to accept care when society pressures them to put themselves last. As the child of a working-class femme, Piepzna-Samarasinha developed a strong working-class ethic making it hard to ask for help doing housework even when she needs it. 

Another challenge was even though the group had similar identities as queer and trans disabled people of color. There was not an intuitive knowledge of all the information across other disabilities. Some physically disabled individuals may need structured daily help, while individuals who fatigue often may need to reschedule tasks, which can be challenging to manage.

An Ongoing, Virtual Care Web: Sick and Disabled Queers

“Disabled Mizrahi genderqueer writer and organizer Billie Rain started Sick and Disabled Queers (SDQ), a Facebook group for well, sick, and disabled queers, in 2010” (60). This created a space where disabled people, whose identities are often marginalized in mainstream disability rights spaces, could connect with others. The Facebook group became a space to share knowledge, meds, funds, and education about disabilities beyond their personal ones. This reframes activism to a more sustainable form where individuals can maintain their health while living and doing activist work.

Accessibility in performance

Most do not think about disability in performance spaces. An example Piepzna-Samarasinha gives is how a theatre built a ramp for a performance she was part of, but tore down that ramp when that performance was finished. A ramp could help many people, like able-bodied people getting props onto the stage, not just those who use wheelchairs. Making theatre an accessible space is not necessarily taught in a theatrical or performance MFA program. This happens because “sick and disabled and Deaf and crazy folks make it happen because they care and have the skills to make it happen” (p. 154).

Art is memorable but also replaceable, which makes people feel like they can never say no to doing work. There is a fight to stay relevant and reach people with your art because “if people know your work, you’ll get work, and your work might reach folks. If not, you won’t, and it won’t” (p. 189). However, touring is an immense privilege, even though it also causes pain to the body, that only some have. Piepzna-Samarasinha is “committed to figuring out together how we can remake performance culture’s expectations and figure out our own disabled and chronically ill performance ideas that allow our bodyminds to thrive” (p. 191).

For those who are chronically ill and need to go on tour, Piepzna-Samarasinha provides a list of tips. The list below is a non-exhaustive list:

1. Take yin chiao at the first sign of an illness to reduce your chances of getting sick;

2. Gargle hot sea salt when you feel a cough coming;

3. Melatonin or Benadryl to help you sleep when you need to;

4. Activated charcoal to help prevent throwing up;

5. Keep emergency protein on you; and

6. Mason jar with half a lemon then fill with water to get electrolytes and hydration.

The Crash and Burn Model

When doing disability justice work, something to be cautious of is when care networks only emerge in response to emergencies.

“Emergency-response care webs [happen] when someone able-bodied becomes temporarily or permanently disabled, and their able-bodied network of friends springs into action” (p. 52). 

The emergency care model is not sustainable and often falls apart after a few weeks or months when it is believed the injured person will become able-bodied again.