Module 2: Introduction to Digital Methods for Disability Studies
2.7 Situating Ourselves: “So Much Time Spent in Bed”
Community Happens in Beds
We will frame this section around the quote below from Leah Lakshmi Piepzna-Samarasinha’s Care Work: Dreaming Disability Justice (2018). You can watch them read an section from the book here:
(Piepzna-Samarasinha, 2018, p. 200)
In this quote, Piepzna-Samarasinha describes the ways that queer crip community is made and sustained across spaces that are physical and digital, public and private. By using digital methods and media, like Skype or Zoom, individuals that are physically separated can work, think, create, and protest together. For many, remaining home is often an act of self/community care or survival (as in a pandemic) and therefore, it is a critical component of both public health policy and personal wellbeing.
Let’s think about some of the challenges and opportunities we have when we advocate, express ourselves, and/or work from home. As we reflect, we can consider the nature of the tools and personal space we have at home to do this work. Take one minute now to think and write about one or two tools you (might) use to work and advocate from home and where those objects are located.
Advocacy Happens in Bed
Earlier we discussed how digital methods allow a plurality of voices to generate knowledge as shifting bodies in a rapidly changing and complex world. Valuing the forms of advocacy and knowledge that emerge via digital mediums from the (dis)comforts of home represents a cultural shift of its own kind. This type of advocacy is explored and unpacked in Johanna Hedva’s impactful essay, Sick Woman Theory, which was written in 2015 while Hedva was lying in bed with a chronic illness. They write,
“There was a Tumblr post that came across my dash during these weeks of protest, that said something to the effect of: ‘shout out to all the disabled people, sick people, people with PTSD, anxiety, etc., who can’t protest in the streets with us tonight. Your voices are heard and valued, and with us.’ Heart. Reblog… …So, as I lay there, unable to march, hold up a sign, shout a slogan that would be heard, or be visible in any traditional capacity as a political being, the central question of Sick Woman Theory formed: How do you throw a brick through the window of a bank if you can’t get out of bed?”
(pp. 3 and 5)
Both Hedva and Piepzna-Samarasinha claim the bed and the Internet as sites of resistance, rebellion, and radical self-care. It is important to note that both Hedva and Piepzna-Samarasinha use their personal experiences of being disabled women of colour to interrogate the violence of patriarchal, white supremacist, and capitalist systems. Personal experience can give us critical insights into the broader trends and ideologies of culture and society, brushing up against currents of power, oppression, and privilege.
The next writing activity will invite you to reflect on your relationship with your own space and the objects in that space. Like Hedva and Piepzna-Samarasinha, let’s start by situating ourselves.
Examine what is around you.
What can you sense and perceive?
Are these sounds, textures, and/or sights familiar or strange?
Personal and domestic spaces can teach us about the world. We act from these places to care for ourselves and our communities. Consider some of these connections between the space you’re in now and the people in your community as you write. Do you ever worry that these spaces need to be protected? If so, in what ways are our spaces—physical and digital—threatened? (I.e. by noise, interruptions to digital connectivity, etc.) These reflections can ground your digital story and your ideas in your personal perspective.