A Crip Writer’s Advice for Surviving a Pandemic

“Write a book!”

“Finish your memoir!”

“Turn all this fear and grief into brilliant poetry!”

As we have all now found out, the cultural imperative to be as productive as possible doesn’t disappear in a pandemic. In fact, the calls for productivity have intensified. People are writing articles and tweeting about how we should be using all this ‘spare time’ to write a dissertation, create a work of art, or finally learn two new languages and… the complicated art of sourdough breadmaking.

Under capitalism, we are always expected to do and be and accomplish more. We should work 60-hour weeks and then come home and do a second shift side hustling. We should teach and edit to make ends meet while also writing a new book every year.

If we don’t, our fear isn’t just that we’ll lag behind – it’s that we might die having never accomplished our dreams. Or we might miss our novel’s deadline. Or we might not make rent.

The stakes are high normally. And now, they’re even higher.

Now, we’re expected to do even more while dealing with the fear of a virus where people die painful deaths drowning in their own blood and fluids, while our friends and family and maybe even ourselves are more at risk of that virus, or might have already gotten that virus, or might have already died from that virus. 

We’re asked to do more even as some of us have lost our jobs or might lose our jobs. Even as those who still have jobs are being asked to potentially put their lives on the line for a paycheck that doesn’t even amount to a living wage. Or are being asked by our employers to prepare transition documents just in case we get sick or die.

Many of us are worried about how to pay rent. Many of us can’t get the medical or grocery supplies we need. Many of us are working from home with kids running underfoot, or with abusive family members or partners, or are by ourselves and feeling lonely.

Some of us are dealing with particularly nasty forms of racism. Some of us are dealing with health issues and disabilities that have been aggravated by all this stress. Some of us are having to fight against health officials who are saying we should not get access to a ventilator and should be left to die because we are disabled or overweight.

Some of us come from racialized groups that are traditionally discriminated against by the medical community. Some of us live in communities where the social determinants of health increase the virus’ potential lethality. Some of us are trying to protect those communities and dealing with people who are enraged by that.

Some of us are worried about what the world will look like after the virus. Some of us are worried that the world we will return to will look too much like before. Some of us are worried that we will be stuck in this limbo for most of this year or longer.

And a lot of us would also really just like to sit on a beach with a friend. A lot of us would also really just love to go out to eat in a restaurant. Or take a planned vacation. Or get married. Or present at a conference. Or go on a book tour. Or go to a family member’s funeral. Or move. Or go dancing. Or go on a date. Or break up with a live-in partner. Or hold a family member’s hand. Or hug a friend. Or. Or. Or.  

Before we talk about productivity or what we owe to capitalism, we need to recognize and hold all of this. All of the ‘ors.’ All of the fear and all the uncertainty. All the yearning and all of the want. All the ways in which this virus is causing us harm while simultaneously taking away our ability to provide each other comfort in the way humans respond to best – with our physical presence. With touch. With the body of a friend sitting next to us on a couch. With a grandparent’s kiss on a forehead. With a lover’s hand ruffling our hair.

We cannot talk about productivity and what we must do under capitalism yet because the weight of all we are carrying is more than many of us have ever had to carry. We need to recognize that it is inevitable that we will break under this. We need to recognize that we are already breaking under it. Because the only way through this pandemic is to know that we will crack and to hope that we will repair. The only way through is to understand that we will then crack again. And to hope that we will then repair again. We need to know this ourselves so that we can be gentle with ourselves and move slowly through this and we need to talk about this publicly so that we can be gentle with each other.

The word that everyone reaches to in order to describe the reality we now find ourselves in is ‘unprecedented.’ There is no true precedent for where we are now so it can be easy to map other narratives onto this time. The people who are singing the gospel of productivity are choosing to see this time as similar to a vacation or a sabbatical -- or maybe even a writing retreat.

But I have never worried about an elderly family member becoming deathly ill from going to the grocery store on any vacation I’ve been on and if all writers weren’t sure whether they’d be able to pay rent when they got home, I think the appeal of a writing retreat might be reduced.

The old language of productivity is a language of another time. This is what we need to realize -- we are living in an After. We had a life that was relatively recognizable and predictable though likely still hard and imperfect Before. But that time is over. And no narratives from that time will map onto our current reality and make meaning of it. Likewise, no ways of coping we used to use will fit perfectly. Not overwork. Or exercise. Or stress baking. Or even binge-watching Netflix.

We need to say it – we are living through a collective trauma. Many of us have recognized this already. Others might be denying it and trying to recreate as much normalcy as possible. Telling ourselves that it will be fine soon. But that too is a trauma response.

This is not a piece with answers. I don’t have them. No one does. I will leave it to others to write listicles about how to write during the pandemic or the five playlists you need to calm your Coronavirus anxiety. I will let others preach about yoga or push up challenges or any other forms of hoped for absolution or escape.

What I can tell you as a woman who developed a disability is that my life already has a Before and it already has an After. My world has already changed overnight. One day I was fine and then I experienced a head injury and I couldn’t walk without losing my balance. And I was on bed rest for weeks. And I couldn’t work for six months. And I was terrified that I might never be able to walk and talk at the same time again. Or use a computer for longer than 15 minutes. Or read words on the page of a book. Or shower without lying down for an hour afterwards.

My injury and my experience of disability are not metaphors for this pandemic. I am not trying to tell you this as a way to compare what I went through then and am still going through now to what the world is going through. What I want to say by telling you this is that having your life suddenly change is deeply traumatic. You will not come out of this unchanged -- even if you remain safe in your home, and no one you love dies and you are relatively unaffected. What I want to tell you is that uncertainty of all kinds is messy and it’s scary. That Afters are unpredictable and that each step into one is a step into darkness. You cannot see the route forward. You do not know if you are on the right path because there isn’t one.  This is new territory.

I also want to tell you how much other people wanted me to give them a narrative about my injury and disability that mapped onto other existing narratives. They wanted me to tell them that the universe was teaching me a lesson about the importance of slowing down. They wanted me to say that I learned not to take anything for granted. They wanted me to declare that I triumphantly relearned how to walk and talk at the same time again and overcame my disability and finished the novel that I was writing when I was injured and that I’m now perfectly healed and fine. They wanted me to tell them a fairy tale of capitalism and productivity and ableism and individualism and recovery that was coherent and straightforward and made sense of the disorganized mess that we call life. They wanted me to give them a resolution to my disability so it was safely cordoned off – away from view and inobtrusive.  

They wanted this because life is terrifying sometimes. The idea that your life can change completely in one day is too threatening for most people to think about. So, they asked me to take all my pain and uncertainty and ongoing experiences of disability and ableism and wrap it up into a story that was positive and soothing and had a happy ending. But recovery is not linear and my narrative about developing a disability has more often been a story about fighting and losing against ableism than it has been about triumph.

But see, that’s also why people are reacting to this pandemic by saying that Mozart wrote a symphony and Shakespeare a play during the Plague. They want to redeem this time. To normalize it. To make it feel safe and comfortable and non-threatening. They want to narrativize it in a way that is consistent with the neoliberal triumph stories we told each other in the past about bootstraps and individual achievement. They want to make this time productive. But that also means that they, essentially, want to erase it.

They want to take something that is unprecedented and make it legible according to a logic and a language that was created in another time and that functioned as a way to oppress and discipline others in that other time as well. Here, they say, is another opportunity to succeed. Here, they suggest, is another chance to get ahead. It is once again time to do more and more and more.

And some people do turn to work when in crisis. And some people do find solace there. And sometimes I’m even one of them. But my experience of turning to work for comfort doesn’t look like a movie montage of a character frantically writing a magnum opus. And it doesn’t feel like that. It feels painful and terrible and frantic. It feels numbing. It gives me respite for an hour and then it stops working. It sees me staring off into space for 15 minutes before realizing I’m doing that far more than it sees me diligently accomplishing things on my to do list. It sees me beating myself up and hating myself and wondering why I don’t measure up to the straw writer I’ve created in my head who is somehow unflappable. Why can’t I just do the things I need to do like everyone else? Why do I have to have all of these complicated emotions and head injury symptoms that get in the way of working every minute I’m awake? Essentially, these productivity narratives make me hate that I’m a human being and not a robot. They put me at war with my feelings. They try to convince me it’s easy to live through this complicated time and that I’m just overreacting.

But remember that trying to be productive when you’re in an After by definition must feel confusing and tentative – because you are walking where there is no path.  And in this scenario we find ourselves – the only way to move is to grope. It is to put one unsteady foot forward and then another. It is to trip and to fall and to walk sideways and to backtrack and to get turned around and to hope that we can find our way again.

Since my injury, the only progress I have known is through slow and steady and often frustrated groping. It is a process that has required me to find my own narrative. I am working on an auto-theory memoir that, in part, looks at the ideology behind conventional narratives of disability. What are the neo-liberal and ableist relations of power at play behind the super-crip narratives that require disabled people to transcend their disability or to compensate for their disability with some amazing talent or extreme level of productivity, for example. What kinds of narratives do we refuse to tell about disability and recovery? Why?

I am trying to rewrite recovery narratives to represent the far more complicated truth of disability and recovery and progress and regress and non-linearity which includes all the stumbles and all the road blocks and all the blank meaningless time spent in pain that isn’t productive and never can be. I’m doing this in order to question our understanding of recovery and disability and productivity and capitalism and what it means to be a fragile human being living in a body today. Can we ever truly recover our Before? Should we want to? Is that the only valid resolution to a story about disability? What does the way we treat disabled people tell us about our cultural obsession with productivity and work and how we intersect those things with value?

Essentially, I am trying to create a new map.

And we all need to be creating new maps right now. We need to throw out the narratives about people overcoming and transcending plagues by creating art. That’s too much pressure to put on ourselves. We are holding too much already to hold that kind of striving too. We need to reject the productivity imperatives and attend to ourselves in the moment. We need to do what my doctors told me to do in my brain injury recovery – pace ourselves. We need to move slowly through this. Pay attention to how we feel and play the long game – balancing out how we will feel tomorrow and next week and next month against what we are doing today.

We have been told that life and capitalism are a race and we’ve all run it. But that race has worn many of us out and taken things from us and consumed each of us in different ways. At this time, we need to throw out the fairy tales it tells us about how to make our way through this forest to the other side. It has never seen this forest before. Its directions are wrong.

Remember that this is fresh territory. The way we make it through will not just be with goals and beautiful loafs of bread and positive aphorisms repeated to ourselves daily. It will also be with frustration and nights without sleep and panic attacks and grief over the dead and grief over the dying and grief over the things that we have lost that are big and small but which all add up and which all matter. It will be anger and laughter. And it will be tears and dancing. It will be protests and push-ups and appeals for help and rent we cannot pay and interdependence and mutual aid and our politicians disappointing us and memes about toilet papers and Zoom meetings and GoFundMes and the slow failure of our health care system before our eyes. It will be loneliness and being too close. It will be writing and not writing. It will be books that don’t get launch parties and independent bookstores that fail.  

We will help each other and we will harm each other. We will be everything to each other and we will never be enough. We will connect and we will miss each other. We will lose and we will win. Our trajectories will not follow any pre-determined path. They will not be linear. They will not be coherent. What we need and can do might change from day to day. Hell, what we need and can do might change from hour to hour or minute to minute. And that is okay.

Because pacing yourself means constantly checking in with yourself. It means asking, can I do this now? Do I have the energy for it? What do I need? Who can help me get it? And it means doing our best to give ourselves and each other the space for that. We might not get much writing done during this time and that is okay.

Because we will lose people and we will have to sit with that agony. We will lose people to the virus and to conditions that they can’t get drugs or treatment for because of a clogged health care system. It will hurt like hell. And there are no easy answers to get through this. I cannot give you a catharsis or a bright vision for the future as an end to this piece. It wouldn’t be honest and it wouldn’t be fair to you for me to do that. It will not be okay. We will never truly recover from this. We need to say this. We need to acknowledge it. We need to stop trying to put a positive narrative over this by saying that we have survived bigger threats. Some of us have survived. Some of us. Remember those who have not.  

Since my hands are empty of platitudes, I can only repeat the crip wisdom that I’ve learned in the last three years since my injury. That it is important to go slowly. To take one day at the time. To pace yourself. To check in with yourself as you go.  To do what you can when you can and forgive yourself when you can’t do what you wanted. To discard old toxic narratives and language about productivity and positivity and linearity and coherence that do not fit into this After. And finally, to reject any attempts to map narratives onto this moment that aren’t gentle and don’t acknowledge how utterly complicated and hard and painful and confusing it is to be alive right now.