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  • Eli Stuart (they/them)

In Bed Activism: The Online Disability Justice Movement (Care Work)

(Image Description: Cover image is of the cover image on the book "Care Work: Dreaming Disability Justice" by Leah Lakshmi Piepzna-Samarasinha. The background is white, with some of a trunk of a white tree (may be birch, may not be) with grey markings and shading in the bottom left corner. The roots point up and out starting near the bottom middle of the cover. The outreached roots have some small, light green leaves on them. On the left side, an brown arm reaches over, leaving the palm on the tree trunk. On the right, a leg of the same color is seen, with the top of the knee being visible and the calf being to the right of the roots. The top has in bolded, all caps, and purple text the author's name: "Leah Lakshmi Piepzna-Samarasinha". Below that, in large, bolded, all caps, and green text is the title "Care Work". In between the words "Care" and "Work" is in small, bolded, all caps, and purple text reading "Dreaming Disability Justice" which is also a part of the title).

“Care Work” by Leah Lakshmi Piepzna-Samarasinha (pronouns: she/they) explores the many faucets and perspectives in the disability justice movement, including how activism looks different for disabled and non-disabled people.

Performative activism, or activism that is done only for the appearance and does not explore deeper roots, is problematic and something I (and others) try to work hard to avoid. Yet during the BLM protests, I never went to a live march, to be out in the streets. Not because I didn’t care or I thought it was wrong, but rather than as an immuno-compromised person, going out in public when COVID was at a high was a great risk to me and my health. The assumption that if you are young and look okay you should worry less about COVID and take some risks were damaging in some ways. I felt I had to explain my existence in being an activist and why my activism didn’t look like others, how despite wanting to go out, it isn't always possible. Recently, a rally I planned to go on and was looking forward to and was important to me (addressing an anti-semitic attacks against my synagogue), but started having bad back pain, leaving me lying down, feeling guilty and disappointed.

“Care Work” ‘s prologue discussed organizing and working from bed as an activist, how “Disability justice allowed me to understand that me writing from my sickbed wasn't me being weak or uncool or not a real writer but a time-honored crip creative practice” (17) Her words resonated with me. Being disabled, and in particular with chronic pain and fatigue, sometimes I can’t do much but lie down, alternating heat and ice to try and relieve some pain and standing up and walking takes signifcant energy.

Disabled people did come and protest in person through the 504 Sit-Ins, but it was not without sacrifice. Some activists who were there said years later how there were still residual and lasting impacts on their health. Despite that, disabled people protested and stood against the ableist system, knowing that 504 would be important to generations of disabled people to come.

However, disability justice and activism online does also cost energy and is laborious as well. The labor from disabled everywhere, but especially from QTBIPOC (Queer, Trans, Black, Indigenous, and People of Color) “are talking about about care work, emotional labor, femme emotional labor, access, and crip skills and science” (19).

Intersectionality is another important component of this, as people tend to focus on white, cishet males and overlook the Black and Brown and Queer and Trans communities are a part of disability justice and must be a part of disability justice. We often see the white faces in the Section 504 Sit-Ins, but focus less on how the Black Panthers stood with and provided food for the protesters for the entire month-long sit-in. The internet has provided a place for lots of QTBIPOC disabled people to be heard and seen in addressing ableism in an intersectional lens. Ableism for white people, for men, and for cishet is different than for QTBIPOC (especially femme people) and to truly fight against ableism means to fight against the racism, sexism, homophobia, and transphobia that goes along with it.

This website is an example of online activism. I still worry that I’m not doing enough. That if it’s not in person it is somehow cheapened. But I would only be hurting myself and other disabled people. Part of learning about the disabled community is learning that often the “norm” that is set is ableist in some way or another. Only listening to disabled people when they say it in the format that non-disabled people like or only listening to the parts that don’t push “too radical” ideas continues to alienate disabled people from being the voice on disability and the disabled community and continues to put focus on non-disabled people’s opinions on disability.

The fact is online or “In Bed Activism” is an important part of the current disability justice movement: “It is undocumented, private work--work often seen as not “real activism.” But it is the realest activism there is. This is how disability justice art and activism change the world and save lives”(19).

Piepzna-Samarashinha, Leah Lakshmi “Care Work: Dreaming Disability Justice” Vancouver, Canada: Arsenal Pulp Press, 2018. Print.

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