Crip in the Time of Corona

Able-bodied people strive to get used to a new normal. But this everyday life is familiar to people with disabilities: less freedom to move, uncertain futures, and social distancing. At the same time, disabled people are facing new challenges during the corona crisis.

First published 26.04.20 in Norwegian at sosiologen.no

English translation by author.

When I was a child, adults told me I was good at not being bored. Talented in the art of entertaining myself and playing alone. The adults' conclusion was that I had an active imagination. As an adult myself, I am now looking back with new eyes. The active brain was never disconnected from the body. The child's body, which for hours sat in the waiting room of the doctors office, in the hospital, for hours was looked at by health professionals, examined, touched, and pinned with needles: the pain of adults who would fix me. I was a sick child. Sick children know their body's distance from other bodies. Children of the same age play, swim and run without thinking about it. Sick children are born with limits. As a child, I often lay in bed. Sick children learn how not to get bored. Many hours spent doing nothing. There was either nothing to do or nothing I could do.

The corona pandemic has given many people time to be alone. Most people are confined within a limited space. Time inside is used for reflection while time outside has almost stopped. However, this understanding of time is not unknown to people with disabilities or long-term illnesses. In disability studies the term crip time is used to describe a phenomenological approach to time as experienced by disabled people. Crip time is an opponent of normative time, or a flexible approach to time organisation that comes from the uncertainty disabled people live with (Samuels, 2003). In example, I like to make plans for a whole week, but everything that is planned can be cancelled. Often at short notice. When I was younger I solved this by planning as little as possible. This approach however made me lonely and sicker than I already was. Today my planning involves everything being uncertain. Everything can be cancelled. All trips are bought with credit cards and travel insurance. All theatre tickets can be given away. And 20 pounds for an event I cannot attend is worth less than the worries, pain and anxiety that result from forcing myself to go. I cannot always deliver work before the deadline, and I cannot always go to work or get up from bed in the morning.

I have a kidney transplant, and I am a board member of the National Association for Kidney Disease and Transplanted Children and Young Adults in Norway (LNTBU). At our last meeting, which took place on Skype, I lay in bed, intoxicated on strong painkillers. Without having to explain myself, the meeting began, as I fell in and out of consciousness. When we have physical meetings, it is not uncommon for several board members to lie on the floor. Even with an agenda that includes many breaks, we still need a different approach to time: a meeting we can be on and off during.

In the beginning of meeting a new in-law family, I often lie down on the couch with a blanket and the in-laws ask if I would not rather want to lie down in a quiet room. "No thanks", I say "I'm happy to stay here". It takes time for new people to get used to this - that I am present, but also not. That I do not want to sleep, because it does not make me more awake, and that I do not want to isolate when I am tired, because then I must isolate at all time. Crip time has become a way for me to exist in a time created for abled-bodied people.

Able-bodied people into a disabled understanding of time.

Then there was Corona. Uncertainty has affected everyone. Everyone must socially distance, isolate, reflect. Abled-bodied people strive to relate to a new normal that is already the disabled normal – the spaces for movement becomes smaller, the future more uncertain and social life distanced (Yong, 2020). In the early days of isolation, we were all being taught new ways to work from home. But disabled people already knew how to set up a home office, how to organise social gatherings from bed and how to create communities without physically gathering.

Right this moment we are all in crip time.

Another interpretation of crip time is that crip time is time travel. When Karen Havelin's debut book Please Read This Leaflet Carefully, came out in both Norwegian and English at the same time, there were a couple of Norwegian critics who did not seem to understand why the book was written from the main character's current time and for each chapter went back in time: from adult woman with children and illness, to young adult with a diagnosed disease, back to child with an undefined disease. For me, this made complete sense. Every time I am at a new doctor's office, they ask me, "when did you have your transplant?" "Did you have kidney disease before the transplant?" "Were you born with kidney disease?" "Have your parents or anyone in the family had organ failure?". These questions are asked repeatedly, even with doctors who have known me for years. My medical history goes undoubtedly back in time. Everything I am today is constantly traced to what has been: "Have you had any infections in the past?" "What medications did you take before?" "How did you react last time you took antibiotics?" "Last MRI?" "Last time you had sepsis?" "Last time you were hospitalised?" "Last time you were on dialysis?".

An all time favourite book is Kurt Vonnegut's Slaughterhouse-five. In the book we meet Billy Pilgrim, an American soldier who survived the bombing in Dresden during World War II, and later was diagnosed with Post-Traumatic Stress Syndrome. Pilgrim is then abducted by aliens from the planet Tralfamadore, from whom he learns time travel. The Tralfamadori see all the time at once: they know when they will die, when their children will die, when the world ends. Their response and general ideology when Pilgrim asks why knowing this does not make them upset is, "so it goes". So it goes, have in many ways been both my mantra and my best relationship with time.

Back to Havelin's book Please Read This Leaflet Carefully, which has received excellent reviews in England and the US. The protagonist of the book, Laura, has just been diagnosed with endometriosis. She has been ill since childhood and keep experiencing new health problems:

I think to myself, I’ll kill myself if anything more happens. But then it does.

The point of Havelin, of course, is not that Laura should commit suicide, but rather that disabled people face uncontrolled and uncertain challenges all the time. And they get used to it. However, as a disabled person you are well equipped to meet these challenges. Being diagnosed with an illness or having a disability often leads to other complications throughout life, and the body constantly goes in and out of "good" and “bad” phases. People with disabilities during the Coronavirus pandemic have largely not had their world turned upside down. We are still isolated in our homes, still struggling to get jobs, we still struggle to get access in schools and universities. You able bodied, on the other hand, have either had to move the office home or have been furloughed. You are upset because you cannot go on vacation, to the store or visit your family. But it is also important to point out that I am not writing this because you should stop complaining or be upset. We are not your source of inspiration. You should not be inspired to endure anymore because we do. Rather, take this pandemic as an opportunity to accept crip time to make your time more flexible. Give us and yourself time to be alone or together in boredom.

We, the disabled, will still experience time differently: our crip time is not your crip time. During the pandemic, many of us are categorised as extremely vulnerable and several have been asked to isolate. I myself have been told to stay inside my apartment for 12 weeks. I get food on the door every week. I have a fungal infection on my face, which I try to treat myself. I have pain in my hips due to my medication, and since the isolation I have had several small infections in my body.

So it goes.

References:

Havelin, Karen (2019) Please Read This Leaflet Carefully. Cinder House: London.

Samuels, Ellen (2003) "Six Ways of Looking at Crip Time". Disability Studies Quarterly, Vol. 37, No 3, 2017. Vonnegut, Kurt (1999 1969) Slaughterhouse-Five. Dial Press Trade Paperback Yong, Ed. 2020, "Our Pandemic Summer". The Atlantic. Available at: https://www.theatlantic.com/health/archive/2020/04/pandemic-summer-coronavirus- reopening-back-normal/609940/