Many of us have found ourselves staying at home more often than usual and have had limited contact with loved ones. For these months of quarantine, we have all been quite house bound. But there are many who are no stranger to staying indoors, far before the pandemic enforced this change. Individuals living with disabilities which necessitate being housebound have always found means of chasing passions and sharing their talents, regardless. A few months ago, artist Tash King created Bed Zine, to showcase the artistic and literary exploits of individuals (such as herself) who have complicated relationships with their beds (and homes) as places of “rest and safety, while also as places of pain and confinement”. King expressed that disabled folks are not simply marginalized, but also often misunderstood. She strives to create an awareness of disabled ways of living, that “disabled people experience joy and desire and all the things that non-disabled people do. If we lived in a world that accepted disabled people and ways of living, then…[disabled people] wouldn’t have to spend all our time advocating for our rights, for accessibility, for representation.”
Therefore, Bed Zine acts as a symbol of true grit and innovation. It brings to light the complexities of being housebound, as it is something some disabled folks have always reckoned with — pandemic or not. The magazine sources submissions from individuals facing limiting disabilities, and according to King, “Bed Zine will make a lot of people feel understood and validated in their personal experiences. I also think it will help educate non-disabled people about some of the everyday things that disabled people experience. It’ll also just be a great collection of art.”
Over email, I talked to King about the very beginnings of Bed Zine, her personal resilience, and the creativity in everyday living with a disability.
Jane Diokpo: Tell me more about your personal background. I read you have a housebound disability that has been ongoing for the last 2 years, so it must have been a big moment for you. I’d love to know more about your trajectory?
Tash King: It’s a lot to tell! I grew up healthy and able bodied, but in my early twenties I caught a virus that activated my illness — Myalgic Encephalomyelitis, which is a terribly under-researched, under-funded and over-pathologized chronic illness that affects people in a variety of ways. It feels like living with a permanent case of severe mono. If it’s mild it can feel like a minor flu, if it’s moderate, like mine, it can leave you unable to work or do much but rest, and if it’s severe you can become bed bound and unable to do almost anything.
Years of seeing doctors with misinformation led me to push myself even harder, effectively ignoring my illness, which culminated in me working full time at the Cinematheque. It was an incredible job, but it caused my health to decline so severely that in the fall of 2018 I was forced to stop working and have been at home resting ever since.
In those two years what has changed has been my awareness of my illness. My discovery of an amazing online community of disabled artists and activists, and my slow transition into a life of acceptance and advocacy regarding my illness. My experience as an educator and writer have perfectly primed me for my position as someone who can raise awareness about my experience […] My sociology degree and my skills as a writer give me great tools for thinking critically about what it means to be chronically ill in a neoliberal capitalist context.
How would you describe your positionality now, discovering more what it’s like to live with, rather than against, M.E.?
We live in a society that moralizes wage labour and constant activity, and most people feel uncomfortable with extensive free time. When I suddenly had endless days ahead of me, I struggled feeling useful and finding structure and meaning in my days. I am constantly trying to strike a balance between listening to my body and resting as much as I need to, while also doing things like reading and socializing that are critical to my happiness. M.E. is a brutal illness because any activity I do — showering, cooking, seeing a friend — is immediately followed by a physical crash. If we imagine every action we do as one dollar, then I have maybe 2-4 dollars I can spend a day, and if I go over my energy budget then I go severely into the red and can’t do anything for a while.
It’s obviously really hard, and I’ve struggled adjusting, but illness has also taught me some really radical and valuable lessons about time, solitude, and communication that I may never have learned otherwise.
Can you tell me a little more about Bed Zine and how it came to be?
I’ve wanted to create a publication of disabled people’s experiences, expressed and represented through art and writing, for a while. A few months ago I found myself thinking about this really simple contradiction that disabled people face: our beds are a place of rest and safety, while also a place of pain and confinement. I figured that lots of people have similarly complicated relationships to their beds, and threw the idea into the world. The zine is so exciting because it is an opportunity for people to see some of these thoughts and feelings represented through photography, collage, painting, and writing. I think people will both relate to it and be educated by it, which is really wonderful.
You mentioned you’ve gotten to know a really supportive and loving community in this work. In what way have they helped; either for you personally or for Bed Zine?
When I stopped working and was coming to terms with my new life as a chronically ill person, I was desperate to connect with others in similar situations but struggled to find them. Over the last few years I have found a really amazing community of people to relate to, support, and learn from, and it’s been really special seeing that care and support reflected back at me as people have shared and spread info about Bed Zine around social media. I’ve had people offer their help, folks offer donations to help me cover the costs of producing the zine, friends offer support and resources — it’s been really amazing.
I came across your review of Rebekah Taussig’s Sitting Pretty: The View from My Ordinary Resilient Disabled Body. In it, you spoke of how her insight on internalized ableism and exclusive feminism spoke to you. As a BIPOC, I also face somewhat similar issues with internalized racism and exclusive feminism. Could you elaborate further on the nuances of ableism and exclusive feminism and what it means to you/ how it may have affected you?
We live in a world that is built by and for non-disabled people. Both literally and figuratively. Ableism is the assumption that disability is a problem to be fixed.[…] Disability is a normal part of life, and disabled people experience joy and desire and all the things that non-disabled people do. If we lived in a world that accepted disabled people and how we exist in the world, then we wouldn’t have to spend all our time advocating for our rights, for accessibility, for representation.
I see feminism and intersectional politics constantly neglecting to include disability in discussions of oppression. While racism, fatphobia, sexism, transphobia, and many other important issues are getting more visibility and being included in more conversations, disability is often forgotten. There may be a few more disabled characters in film and television, but they are rarely played by disabled people. Ableist language like “lame” and “crippled” are still used without a second thought. Event organizers rarely think about making sure their spaces are accessible to wheelchairs, or that they are scent-free, or that they have ASL interpreters, or that they have seating areas for people like me that can’t stand for very long. During my sociology degree we studied so many aspects of oppression, but disability and ableism was never mentioned.
What makes you resilient, or gives you personally the courage and inspiration to make the work you do?
When I think about how lonely and alone I felt early on in my illness experience, I get really revved up because I don’t want anyone to ever feel that way. I thought that illness meant that my life was over. But the presence of an amazing disabled community has uplifted me, changed my life, and given me purpose and motivation. I want to help create a world where disability is always considered. Just a normal part of life. If the world becomes accessible then disabled people will be given the opportunity to simply live — and that is a right we unconditionally deserve.
Beds signify rest and repair to me beyond all else. To me, a bed is not only where I sleep but where I go when I’m unwell/sad/looking for comfort. It doesn’t always give that back. What does “rest” mean to you, and how has it been a part of your creative process?
Rest is a complicated thing for me. It’s something I am forced to do all the time to survive, and it’s something I can resent. But, it’s also taught me a lot about slowing down, listening to my body, and looking forward. Rest is inextricably tied to my creative process, because I have to rest a lot to do anything, so it’s both a punishment and reward stemming from me doing anything creative and fun.
I think Bed Zine will make a lot of people feel understood and validated in their personal experiences. […], and I also think it will help educate non-disabled people about some of the everyday things that disabled people experience. It’ll also just be a great collection of art.
The first issue of Bed Zine will be available in Spring 2021. For updates, check out Tash’s instagram @dept_of_speculation and for inquiries about the zine you can email bedthezine@gmail.com
