BY CHARLOTT SCHÖNWETTER
“The virus is not so bad, it is only really concerning for the old or people with pre-existing conditions,” is a sentence I heard loud and clear too often to count at the beginning of a still ongoing pandemic now spanning more than two and a half years. I have heard it in different iterations ever since. Disabled and chronically ill people have been forced into prolonged isolation as covid continues to rage. In some cases, even that is the privileged form of dealing with the pandemic; others do not have the option. Just like they have been warning since early 2020, disabled people have been either “forgotten” or easily dismissed. Eugenicist logic is voiced by politicians and media without sustained and visible pushback. Disabled people did realize early on that this pandemic has the potential to become a mass disabling event if careful measures were not put into place. But as is so often the case, their analyses were not taken seriously.
In January 2019, the Black queer disability activist, writer, actress and model Imani Barbarin created the hashtag #ThingsDisabledPeopleKnow on Twitter. As a direct response to critiques on Barbarin’s take on disability representation in Hollywood, but also in general to the constant dismissal and ignorance of knowledge disabled people hold, disabled people shared their experiences and nuggets of knowledge under this hashtag. There is so much disabled people, especially those living at the cross-section of several marginalisations, know. This knowledge—which, of course, is also shaped by different experiences depending on the kind of disability or chronic illness the person lives with, if the person has moved through this world disabled right from birth or acquires it later in life and other factors—might include an on-point analysis of societal structures which add to people being disabled, nuanced critiques of capitalism but also information on how to keep things sanitized as well as possible.
In the midst of the daily onslaught of ableism provided by people negating Covid, I found myself drawn to books written by disabled and chronically ill writers, especially non-fiction that engaged with our possibilities to live and to create lives worthy for all. I was hungry for the wisdom, humour, poetic phrases and biting commentary of fellow chronically ill and disabled people to counter a world in which our very right to existence is daily debated. I longed to see disability and chronic illness as a well of possibility, a lens which enables inclusive thinking.
The first time I felt truly seen in my experiences of pain, was when I read Sonia Huber’s essay collection, Pain Woman Takes Your Keys, in 2017. One of the essays is titled “Welcome to the Kingdom of the Sick” and I felt that embrace while I leafed through the pages. In the book, Huber writes about her experiences as a white woman with chronic illness and pain, looks at the (US) health system, analyses common discourses on health/ illness, and asks what pain actually is/ means/ does. This might sound dire but this book made me full-on belly-laugh, especially while reading Huber’s take on the pain scale. Even if you are not chronically ill/ disabled, you might have been asked by a doctor to judge your pain on a scale from 1 to 10. And while other more complex and accurate pain scales do exist, this is still the most common one employed in a medical setting.
I have my own devastating experience with this scale as I was asked to name a number a few years back in an ambulance on the way to an ER after not one, but two trains were stalled as the conductor—seeing the amount of pain I was in—did not feel well leaving me at the train station without knowing that the ambulance had arrived. In the ambulance, I named a fairly high number for the pain I had just experienced though I already felt better. The ambulance driver ridiculed me and replied that this number was only appropriate for a woman if she was giving birth. Without unpacking the gendered (and surely cis-normative) assumptions, the full irony is that when I was finally diagnosed a few months and many ER visits later, I found out that a lot of people who had the same illness and had given birth compared the pain levels and judged birth to be less painful. But even if taken seriously, a privilege many chronically ill and disabled people—especially multiply marginalized ones—never have, one sole reply to the pain scale as a single data point seems so utterly useless. Huber’s tongue-in-cheek “alternative pain scale” instead is practical, relatable, and more importantly, funny. Her steps include: “4. Couch. All I want is my couch and Netflix”, “8. Do you still love me? Someone tell me they love me because I worry you hate me when I am in pain. Am I irritating? Is it hard to love a near-invalid?”, “13. I can’t read. The sentences are too hard. Remember when books?” and “20. Am I going to puke? Would I feel better if I puked?”.
The tone within the collection changes from lyrical to outright snarky, the form from essay to open letters to lists. The writing and stylistic choices themselves are an echo of living in constant pain. It is not just the content but the form as well which changes, adapts, and makes room for new approaches. A lot of the texts are fairly short. Some of the texts do not have long paragraphs but are written in a sort of poetic staccato: sentence, sentence, sentence. This way of writing reminds me of how my mind works under the stress of pain and the accompanying brain fog. It takes a lot to even formulate one coherent thought in one sentence as the concentration span is often incredibly short. Another lesson here: The specifics of your disability/ chronic illness does not only affect your perspective on things but also the ways you will be able to convey the knowledge you have.
I will admit that it is not always easy to truly embrace such lessons. While I nod reading and agree with what feels like my entire being, there is a lifetime of ableism lying like heavy sediment on all my muscles. It’s difficult to shake that off. It’s hard to divorce oneself from societal values and expectations around health, productivity, and what makes a good life. Eli Clare takes the metaphor of a mountain and runs (stumbles, moves carefully?) with it in their 1999 essay collection, Exile and Pride. Disability, Queerness, and Liberation. They ask how many marginalized people have tried to get up the mountain and how many marginalized people measure their lives assessing how close they get to ascend the mountain. Clare writes: “We’ve hit our heads on glass ceilings, tried to climb the class ladder, lost fights against assimilation, scrambled toward that phantom called normality.” They go on to explain that all our lives we are told the summit is worth it and the only reason for us not making it is that we are lacking in one way or another.
But the thing is, this mountain and its paths up were never meant to enable everyone who wishes to make the journey: the paths are not accessible for wheelchairs, the signs are only ever in one language, the necessary gear is too expensive for many, and the knowledge of how to use the gear is not widely shared. But even knowing all of this, it is hard to not want to even try for capitalism also tells us that if we don’t even attempt to achieve the arbitrarily set goals in this society, we are losers.
Reading Clare’s beautiful descriptions of this struggle helped me partially reassess my priorities. During the pandemic, I found myself sicker than I had ever been before. When I was diagnosed, my body was ready to shut down. I was told that I could fall into a coma at any given point. I was given the choice that either the specialist doctor in whose office I sat would call an ambulance and send me to the hospital or I could go home to monitor my situation and come to the doctor’s office every day in the mornings for check-ups. I chose the latter and was told that if I were just five minutes late, they would call an ambulance to my home as they would suspect that I am in a coma or dead.
In 2019, I would have chosen the safety of the hospital without a doubt but in February 2021, I was afraid I might contract Covid in the hospital. On top of everything, that would be the last straw. I was also afraid of not being able to keep in touch with anyone. I of course didn’t even have a phone charger on me. As you read these words on your screen, you will have already rightfully concluded that in the end, I made it through. I did not die and I also did not fall into a coma. But even after this harrowing experience, for a couple months more, I tried to run up that mountain.
I would like to say that I returned again to Clare’s words immediately—or similar words by other fantastic disabled writers—let them speak to me, and found the strength to do the necessary cuts in my life. But even if all this knowledge is out there and we can consume it, sometimes it still needs therapy, weeks of crying, and a full breakdown in the middle of the night to not only intellectually get the message but actually feel it and act on it accordingly. A few weeks after I committed to a very difficult decision in order to make my life more livable, I fell ill with a rare, but often curable, disease on top of the chronic illnesses and issues I already carry. Now, one year later, I still wait to hear the words: “You are healed from that disease.”
The first book I read about disability which also touched upon the Covid pandemic was Shayda Kafai’s Crip Kinship: The Disability Justice & Art Activism of Sins Invalid. As the title shows, this is not a book about the pandemic as such, but how could you write a book within the pandemic about disability justice and not refer to the ongoing onslaught on disabled people? Sins Valid, founded in 2005, is a performance project rooted in Disability Justice and centers, in particular, disabled BIPOC and LGBTQ artists. In Crip Kinship, Kafai documents the history and praxis of Sins Invalid and analyses how the project tackles or relates to topics such as community, storytelling and art-making, education, the titular crip kinship, sex and pleasure, beauty, and manifesting futures. The book is an incredible source detailing not only the work of Sins Invalid but it also deepens one’s understanding of Disability Justice as a concept and as praxis.
Kafai’s words deeply resonated with me when she describes how living through this pandemic, the climate catastrophe, and just the day-to-day of this world has affected her in the past few years. She writes: “I used to have expectations for humans that I don’t anymore. It’s sobering to experience a pandemic and see how difficult change is for people. It’s sobering to see how much pain the ocean can be in and how few fucks humans can give. It’s painfully sobering. I’ve had to do some serious expectation management of our species. You can only get heartbroken so many times before you recognize the nature of the beast.” I have read this paragraph so many times. It has fueled my anger but it has also soothed something in me. To see a person outside of myself give voice to these ideas actually ignited brief sparks of euphoria as in the middle of the often isolating experience of living during Covid, I felt deeply connected to others who are experiencing the same things as me.
As a result, Crip Kinship is not a sad book but a hopeful one. Shayda Kafai celebrates the knowledge production and inventive praxes of disabled, chronically ill and Mad people. She refers to the archives they carry and the intergenerational memory banks which exist, the stories which are told and retold and the effect this can have, especially when the perspectives of “radical disabled, queer of color contemporaries, elders, and ancestors” are centered. This knowledge could enable us to dissect white supremacy in all its forms and layers for colonialism, capitalism, racism, ableism, hatred towards trans and queer people and other forms of suppression are interlinked in their roots and effects. Kafai sees disabled people crafting themselves new routes to follow, the routes which will hopefully show us all how to circumnavigate the metaphorical mountain once and for all.
Disability knowledge–or whatever term you might find for it–is so rich but, thanks to ableism, it is all too often disregarded. Disability knowledge is about how we observe the world, how we understand and make sense of the world, how we move through the world, and how we make our own existence possible. Disability knowledge spans from vast and complex theories to the exchange of information on the nitty-gritty of navigating everyday life. One writer, artist and activist who exemplifies this is Leah Lakshmi Piepzna‑Samarasinha and during the last two years I found myself re-reading two of her books I had at hand: Care Work: Dreaming Disability Justice (2018) and Tonguebreaker: Poems and Performance Texts (2019).
In the former, Piepzna-Samarasinha writes about the history of disability justice and their justified fear of this movement being co-opted, about rethinking care and access, suicidal ideation, new models of survivorhood, so called call-out culture, and making space for disabled/ chronically ill elders. Again centering the experiences and knowledge of disabled/ sick/ Mad QTPoC, especially femmes, Piepzna-Samarasinha documents activist history (which is (made to be) forgotten or over-written), offers practical tips (for example in her essay “Chronically Ill Touring Artist Pro Tipps”), and discusses conceptual work like “care webs”, which describe ideas of collective care outside the medical industrial complex. The content and context of creation is also reflected in the different text forms: there are essays, lists, and conversations with other artists and activists.
Tonguebreaker takes up a lot of similar themes but sees them reflected in poetry and other kinds of performance texts. The variety of forms Piepzna-Samarasinha employs throughout her works offer access points for different kinds of people but it also might speak to different parts of one and the same person. The texts help me to think through specific problems but also lead me to my emotions. In Tonguebreaker, they describe disability as “adaptive, interconnected, tenacious, voracious, slutty, silent, raging, life giving”. It is this contradictory truth which many abled people seem not to grasp at all but which is also often difficult for disabled and chronically ill people to access as we too have to wade through ableist thoughts and teachings. Still, for us to be able to think about disability in such a way is a lifeline.
This essay was due months ago, and then again a month ago, and then again yesterday. In my early twenties, I prided myself on making deadlines work, on being reliable, and pushing through. I still often make plans as if my body with all its realities wasn’t mine to handle. But in the last month, I had to suppress my immune system to treat one illness (a special joy in an ongoing pandemic which many treat as if it’s over) and the domino effects of medication led to me having to inject myself four times a day for a totally different illness. I have been struggling with extreme fatigue, not making it through a day without sleeping. I have been constantly in heightened pain. There have been changes in medication again and again. There are new tests scheduled. This is draining.
Living with chronic illnesses and disabilities often means to balance feelings of “more of the same” and “wow, not another drastic change”. It means ongoing adaptation. It means grieving a version of yourself which you will never be (again)–often not only once, but again and again and again. Dealing with it in the middle of a global pandemic often is more heartbreaking than usual as everything we know to be true about our ableist societies seems even more acute, dangerous, and damning. And while books are not the only source to disabled knowledge–and books and longer written texts are not accessible for everyone—they are one important source. Picking up non-fiction books by disabled and chronically ill authors allows us to feel connected, allows us to dream up better futures and to find some tools which help to manifest such a future. In October, Leah Lakshmi Piepzna‑Samarasinha’s latest book will be published. It is aptly titled The Future Is Disabled: Prophecies, Love Notes and Mourning Songs and I, for one, cannot wait to take another step towards a new world which includes us all.
When CHARLOTT SCHÖNWETTER was ill as a child, her parents always gifted her reading material. Now as a chronically ill/ disabled adult she feels she always has the perfect excuse to get herself new books. Her writing on pop culture and literature has been published mostly in German language publications such as an.schläge, ak analyse&kritik and WASD – Bookazine für Gameskultur. In English, she shares her thoughts on books, culture, and politics regularly on Instagram (@half_book_and_co) and less frequently but more in depth in her literary newsletter Have You Read…? (https://tinyletter.com/haveyouread).