I’m working on this essay when a friend texts me. His therapist suggested he write a list of things that he likes about himself but the picture that shows up on my phone is just a blank page.
“Having a bit of trouble,” says the message underneath.
I’m not surprised he’s struggling. It’s far too common for me to get texts like this from the many disabled people in my life.
(This is why I’m writing this essay. This is why it’s important that you read it).
Tonight, I’m angry instead of sad. I’ve spent the last week thinking about brokenness – about who we break in our society and how we do it.
But I’ve also been thinking about how we might push back against that breaking.
I pick up my phone and type back a long message. I tell my friend all the ways that he’s beautiful. I tell him that I love him. I tell him that it makes sense that he feels this way – when the world tells disabled people all the time that our bodies are wrong. I tell him that I know this feeling, too. That I live in it, too. And that I’m also not sure how to live in it.
I tell my friend that this week I have been trying to imagine, in my own way, what we’ve talked about together so many times before – a world where disabled people are valued. A world that stops breaking us. A world that finally apologizes for its violence.
“I want to find a way to write that allows us to take the sharp edges the world has left us with,” I frantically type, “and turn those broken pieces outwards. I want us to be able to use them to cut the world as we move through it in order to rip it apart so we can make a new world -- so you don’t need to text me that you can’t think of positive things about yourself because you know them. You just fucking know them.”
(As I press send on that text, I realize that I am writing this essay to try to do the impossible -- remake the world so my disabled friends never feel this pain again. This essay was already a failure from its first sentence. Read it anyways).
“Do you think you’ll write about your injury?” a friend asked me five months after I dropped a weight on my head. We were sitting in my living room drinking tea. It was a beautiful day, but the blinds were drawn and I had on sunglasses.
“No,“ I answered without hesitation. “What could be more boring than another head injury recovery story?”
(I still thought then that mine was a story of recovery).
Since my injury, I’d made a lot of progress. A few months previously, I would have hesitated in my response – not because I wasn’t sure what to say -- but because the process of turning thoughts into words was a slow one then. Great effort was needed to push each syllable out.
By the time I sat in my living room declaring I had no intention to write about my injury, I only sometimes struggled over words. I could finally go out in public again to quiet restaurants without my brain feeling like it was melting down.
Write my story? There was little about my experience that felt unique. People hit their heads all the time and recovered. My journey, I believed, was almost complete.
Anyways, I had other projects I wanted to write. I just needed to focus on fixing my visual processing issues so I could use a computer screen for longer than 30 minutes at a time again. But that would surely come soon.
(If you would have told me then that three years later my life would still primarily be shaped by my head injury – I would not have believed you).
Joan Didion once famously said, “We tell ourselves stories in order to live.”[i] Part of an essay by the same name in her collection The White Album, Didion uses that sentence as an entry point to talking about how we use narrative to provide order to the chaos of life. The first time I read that, I thought it perfectly captured why human beings are storytellers. We are a species in search of enabling fictions to give us the strength to go on. I am less convinced of that now.
I no longer think we tell stories to save ourselves. I share Didion’s skepticism about storytelling but for different reasons. I don’t believe storytelling is used primarily to comfort ourselves or to give shape to the formlessness of time and events. The biggest lesson I’ve learned from being disabled is how deeply stories harm – both those told by others about us and those we are taught to tell about ourselves.
It took me 10 months to identify as disabled.
This was despite the fact that I was on disability leave for 6 months and was protected by disability rights legislation when I returned to work. It took so long because ‘injury’ is so closely married with ‘recovery’ in our culture.
When I was injured, I was immediately surrounded by discourses that anticipated my quick return to health. Friends asked frequently if I was ‘feeling better yet,’ and sent ‘get well soon,’ cards. My boss wondered when I would be ‘cleared to work,’ and HR required that I send weekly doctor’s notes.
I fully expected my story to follow the same well-trodden recovery arc played out in a whole cannon of memoirs, movies, and news stories.
Arthur W. Frank talks about this genre, which he calls ‘restitution’ narratives, in his book The Wounded Storyteller. These plots, he says, essentially follow one formula: “’Yesterday, I was healthy, today I’m sick, but tomorrow I’ll be healthy again.’”[ii]
But restitution memoirs do more than just tell ‘inspiring’ stories – they also circulate ideological beliefs about health and cement particular kinds of cultural values. For example, one of their main functions is to elide fears around death and the body’s uncontrollability. “The teller of the restitution story wants the body’s former predictability back again,” writes Frank. “Any sickness is an intimation of mortality and telling sickness as a restitution story forestalls that intimation.”[iii]
In that way, Frank suggests that restitution stories are a kind of fetishization of health – something we focus on because we are terrified of looking too closely at the uncertainty of illness or injury on their own. We are willing to countenance disability – but only if our journey through it deposits us safely back in the realm of health. While Frank distinguishes restitution stories from quest narratives, quest stories are similar in structure and have a deep cultural legacy in the West.
Narrative psychologists like Dan P. McAdams claim that the redemptive quest is one of America’s dominant personal narratives, literary theorists like Joseph Campbell in The Hero with a Thousand Faces argue that quest stories are the monomyth from which most mythologies derive, and writers like Christopher Vogler in The Writer’s Journey advise that all screenplays should follow this plot. Yet, despite the fact that these narratives form the crux of the stories we tell about ourselves – we don’t often examine what these types of stories actually ‘do’ in our culture.
To understand that, we need to attend to their form. The quest narrative has three distinct parts – departure, initiation and return. They feature a hero who starts in a familiar world, is called to adventure, experiences challenges, revelation, transformation, and atonement -- and then returns to the known world. The narrative’s movement is primarily forward and one that emphasizes return.
While we are used to narratives being shaped in this way because they’re so prevalent, it’s odd that they have gained such prominence since the stories of our lives are rarely resolutely forward moving. Sometimes we exist in stasis. Sometimes we spend our lives progressing and falling back – our narratives Sisyphean rather than heroic. Many life trajectories look more like the erratic scratchings of a toddler than the linearity of a five-act screenplay.
This is especially true for those of us who experience illnesses and injuries which disrupt the flow of our lives. Life then becomes centered around good days and bad days, setbacks and flares --- and sometimes hours, days, weeks, or even months of pain or struggle that keeps us stilled in a way that resist traditional Western concepts of narrative development.
We fail to see the value in stories of non-recovery since we are primed to understand value through traditional narrative shapes and capitalist logics which only see a certain form of progress as productive. If there is pain it must have a purpose or a meaning. We must be transformed by it into something stronger or better. Stories that do not skip quickly over pain as if it were a mere plot point or see it as just an opportunity for learning on the way back to health are disruptive. So much so that they often make people squirm.
I saw this firsthand when my book club read Beckett’s Molloy. Molloy is a novel that is, in part, about the absurdities of living within an ableist society in a body that is degenerating – when people refuse to acknowledge that their bodies will also someday degenerate and therefore set up systems for policing the disabled human body. In the book this is personified by a policeman who arrests Molloy for sitting on a bicycle the wrong way. What I read as an indictment of ableism was experienced by almost everyone else in my book club as -- a downer.
“It’s just so depressing,” one of the other members said after I made a passionate defense of the book. It was a year after my injury and I had seen some of my own experiences perversely mirrored in the novel.
I was shocked by this response because we had read books about death and we had read books about war and no one had responded that way. I realized, in that moment, that many of us can sit more easily with stories of death because they offer directionality and certainty. We all know we will die, but many of us still refuse to acknowledge that we are likely to become temporarily or permanently disabled sometime in our lives before we do so.
Also, the absurdity and uncontrollability of the non-recovering or degenerating body presents us with a persistent liminal state between health and death that requires the reader acknowledge that there are some experiences that persist. Obstacles that, contrary to the prevalent bootstrap ideology, will or character alone cannot overcome. Such stories are deeply uncomfortable and even depressing because they suggest that we have far less agency in our lives than we like to believe we do. The fact that the other people in my book club couldn’t recognize the potential of joy and humour within the absurdity of disability and ableism – something Beckett touches on frequently in Molloy – also shows how few narratives we have that feature nuanced and lively engagements with disabled lives.
This is a problem because when we discourage the telling of stories of non-recovery in our culture, we don’t then have a storehouse of these stories to make sense of our own lives and the lives of others when we encounter injury or disability. And it isn’t something we can run from -- as Beckett’s novelistic trilogy, that includes Malone Dies and The Unnamable, repeatedly points out in it’s atomistic focus on various forms of bodily degeneration.
(I am sorry to inform you, Reader, that you won’t be spared either).
Yet rather than see disabled and injured people as having wisdom that abled people might someday need, we are asked to make our stories fit into the forms that are available to us. We must follow the restitution arc, or become the cripspiration (a similar narrative which requires that disabled people overcome their disabilities to achieve great things for the purpose of inspiring non-disabled people), or be consigned to being a failure. All of these narratives are their own Procrustean beds, however. They stretch us out or lop parts of ourselves off or do both simultaneously.
(Some stories are a form of violence).
If you use Susan Sontag’s famous metaphor that we are all born with two passports – one to the realm of the ill and one to the realm of the well – in most cases, an injury is just a visitation to the realm of the ill. [iv]
(A temporary visa, so to speak).
And when you think you are only visiting a place, you might not put effort into turning that new country into a home. You might decide it’s easier to just live out of a suitcase.
During the first year after my injury, when I did my grueling physiotherapy every day, I would imagine a date in the future when I would be well again. Only no matter how far I looked ahead, that day would eventually come and I would still be struggling.
In the first two years after my injury, I planned and cancelled a trip to Europe three times. I sketched out an idea to start a non-profit that fell through. I committed to event after event and then was devastated when I couldn’t go to them. It wasn’t until the second anniversary of my injury that I finally decided to stop planning based on my imagined recovered body. I would only make plans based on the body that I had now.
“You can’t give up,” a friend told me when I shared this shift with him.
My friend said that he was concerned that if I stopped planning things, I would become complacent, that I would accept my body as it was, that I would give up hope.
“I hate when you call yourself disabled,” he added. “You’re going to get better. I know it.”
I tried to tell him that both things could be true. I could accept that I was disabled now and I could still work towards my recovery. But by not pinning my hopes on my body suddenly getting better – I gave myself space to live in the body I had. To make it my home. I told him that there was beauty in disabled lives and bodies. That I had to stop spending all my energy striving to get rid of disability and spend energy embracing it, too.
Only he couldn’t understand my reasoning. My desire to exist within the tension and uncertainty of my slowly healing body wasn’t legible to him. And he wasn’t the only person in my life to feel this way.
Every time I saw friends, they expected me to be recovered. They wanted to celebrate my recovery. They waited anxiously for me to be the person I used to be.
(In fact, many expressed such deep disappointment when I told them that I still wasn’t well that I eventually started feeling guilty that I didn’t have a recovery to offer them).
What abled people often don’t realize is that there are a number of different models of disability. The most commonly known is the ‘medical model’ – which says that disability is something physical that happens in the body and which must be treated and cured. In this model, it is the body that disables.
In contrast, the model that many disabled activists prefer is some version of the ‘social model.’ It posits that bodies have impairments and that those impairments may cause pain or make a body function differently but that impairments don’t disable. Instead, it’s society that disables because it’s designed in ways that exclude impaired people or refuse to accommodate them. In this model, an impaired body isn’t necessarily a disabled body – it only becomes disabled when it encounters systems and architectures that do not allow that impaired body to participate as fully as non-impaired bodies.
I prefer a model of disability that goes a bit further – a Foucauldian version espoused by Shelley Tremain in Foucault and the Feminist Philosophy of Disability[v] that looks at how both disablement and impairment are concepts that are always already socially and discursively constructed. That sees human variation as broad but that looks at how structures and power place historically specific values and limitations on certain kinds of bodies. In this definition, disability and impairment don’t actually inherently exist. They are just bodies of discourse used to marginalize certain people because their bodies function outside a constructed idea of normal.
(By that definition, disability and impairment are essentially just the stories we tell about ourselves and others).
A few months ago, I was having coffee with a friend. The coffee shop was loud and busy, but I was having was a good brain day so it didn’t bother me. I was trying to explain how hard it is to talk to non-disabled people about what it’s like to be disabled.
“It sounds like you’re talking about hermeneutic injustice,” he interjected.
“What’s that?” I asked, curious.
“It’s a concept that a philosopher named Miranda Fricker wrote about,” he said, taking a sip of his coffee. “Essentially, it means that there are certain groups who haven’t traditionally been part of creating cultural knowledge because they’ve been marginalized and so we don’t have common conceptions to understand their experiences. Think about how women struggled to talk about sexual harassment before the concept was developed. It sounds like there aren’t shared narratives or names for the type of ableist experiences you’re trying to talk about.”
I nodded, taking this in. And then I went home and immediately bought Fricker’s book, Epistemic Injustice. [vi]
So, if we don’t tell ourselves stories in order to live – why do we tell them?
Foucault wrote that, “In discipline, it is the subjects who have to be seen,” and not power.[vii] Narrative psychologist Michael Guilfoyle believes that stories like recovery narratives are one of the key methods that power disciplines us -- but in ways that allow it to not explicitly appear to be doing so. Such discourses focus instead on creating norms around how individuals should behave and perpetuate what he calls in his book The Person in Narrative Therapy: A Post-Structuralist Foucauldian Account a, “naïve view of human agency, associated with notions of free will, choice, personal growth, and the release of the individual’s inner ‘potential.’”[viii]
He goes on to say, “these discourses easily cast a shadow over social, economic, or cultural factors. And the invocation of such factors as a way for accounting for persons’ failures to measure up to the standards of success prescribed for them can be branded as excuses. One’s life potential… is in one’s own hands… prejudicial practices are… seen as irrelevant to the life circumstances in which a person finds himself or herself.”[ix]
In a neo-liberal capitalist society, telling people they have to be a ‘hero’ or a ‘survivor’ when they are suffering, orients us all towards individual forms of self-care and rescue rather than structural or communitarian ones. It also puts any failure to thrive at the feet of the person who could not recover instead of seeing it as an amoral outcome of biological factors or a political and social failure of systems of care.
Whether consciously or unconsciously, when we see people become disabled by their injuries – we are conditioned to judge them for it. We see them as the failed protagonists of recovery narratives or ‘cripspiration’ success stories. We tell them to focus on their abilities instead of their disabilities. We expect them to personally make up for the structural ways they are disadvantaged by society. As a disabled person, I’ve seen how this makes it easier to discriminate against such people, to call them lazy, to see their lack of success and even their abject poverty as their own fault, and then to see any support they get as a drain on public resources.
(Generic cultural stories like recovery narratives aren’t benign – they are technologies of power used to justify or create a lack of empathy towards certain kinds of bodies).
The desire to write about my disability grew slowly. It wasn’t one experience that convinced me to – but a series of them.
The seed was planted immediately after my injury when a person I cared about went around telling people they believed I was making my symptoms up for attention – even as I spent my days learning to walk and talk at the same time again.
A few months later, a family member called me after I told them I was physically unable to talk that night because I was suffering from transcient aphasia, one of my common brain injury symptoms, and yelled at me for being ‘selfish’ for refusing to do so while I tried desperately to put words together to respond.
Despite an initial outpouring of support, people I was close to began disappearing as the months wore on. I was told I was a burden. I was told I was a liar. Friends came up and happily proclaimed that I was completely recovered as I stood before them overcome by invisible and painful symptoms that I had to explain again and again were always present.
People got frustrated when I collapsed from overstimulation when out. People yelled when I said that my fatigue was so intense I wasn’t physically able to drive to see them. People even checked my social media accounts to see if I had been out recently and told me that I couldn’t feel ill that day because I was smiling on Instagram the day before and therefore if I canceled plans on them it wasn’t because I was unwell but it was because I was a shitty friend who didn’t care about them.
When I tried to tell people how hard it was to face so much ableism, I had them tell me to talk less about my disability because no one would want to be friends with me if I didn’t become more positive. People even told me to hide my disability when dating because no one would love me unless I duped them by initially pretending to be well.
These things came at me day after day, week after week, month after month. They accumulated.
(I began to tense in anticipation of harm around people I used to trust).
In The Wounded Storyteller, Frank talks about a person who wrote him a letter that said that, “‘The destination and map I had used to navigate before were no longer useful.” That was exactly how I felt after I was disabled. I tried to orient myself in the world as I had previously. I pushed myself towards my goals according to the dictates of my abled body, not my disabled one. I expected friends to react to me with the same kindness and care they had previously. But my body had changed. And my friends couldn’t see that because I looked the same.
It took me a while to realize that the way I saw myself and the way I was treated was directly caused by the harmful cultural stories we tell about injury and disability and health and accommodation and value. Those wrong maps are the ones that help us navigate what to do when a friend who looks fine cancels on us at the last minute or isn’t able to listen to us when we’re in crisis.
We don’t have stories that tell us how that friend’s disabilities might be intermittent, invisible, and unpredictable and how frightening it is to live in a body like that. How much someone living in such a body might need extra kindness and care and not less. We don’t have stories that tell us that disability isn’t something that we can visibly see – that things like pain, brain fog, and fatigue can exist beneath a nice outfit and a smile. We don’t have stories that say that we need to believe people when they tell us they are unwell. Instead, we have discourses that say that disabled people are often fakers -- we are trained to bring doubt instead of empathy to our encounters with disabled bodies.
This attitude is so pervasive in Western culture that it’s seen as sport. According to the book Crippled: Austerity and the Demonization of Disabled People by Frances Ryan, in the UK, a newspaper, “launched a campaign to ‘Beat the Cheat,’ even setting up its own national benefits-fraud hotline and calling on ‘patriotic Brit’s to ‘name and shame fiddling scroungers.’”[x]
In a recent post on the blog Disability Visibility Project, Khairani Barokka talked about how colonial visual culture helped construct the idea that a “non-disabled person can ‘tell’ when a person is sick.” She writes instead that we must reorient our way of seeing the world so that we recognize that, “there is the possibility of pain in every picture.”[xi]
(It is exactly that kind of reorienting that I believe we need new maps for. Maps that aren’t visual. Maps where we use trust and belief and interdependence and compassion and love to orient ourselves instead).
When I was injured and did not recover, I found myself in a place few have written about – the realm of those disabled by injury who have no big inspiring narrative to compensate for that fact. Because of how I was treated by friends and family, I struggled with the feeling that I would never be enough and that my disability would always be seen as a personality flaw. That is -- until I stumbled on a quote by Sara Ahmed in her book Living a Feminist Life. “Perhaps we can develop a different orientation to breaking,” she wrote. “We can value what is deemed broken; we can appreciate those bodies, those things, that are deemed to have bits and pieces missing.”[xii]
This project of reclaiming ideas of brokenness and breaking felt fitting to me. When I was first injured, I used to joke that I had a broken brain. It’s actually a useful metaphor for what happens to brains after a blow. The connections and pathways between neurons are disrupted and new connections need to be rebuilt. But those new paths don’t work the same as the old well-trodden ones. It’s as though someone smashed a water pitcher and to repair it glued random pieces together. You can put water back into the vessel but it won’t work the way it used to – water seeps out between the cracks.
When we talk about trauma or injury, people often bring up the Japanese art of Kintsugi as an example of the beauty of healing. Kintsugi is the process by which broken pottery is repaired that highlights the broken pieces by suturing them together with gold. In my readings on injury and trauma, I have encountered account after account of people using this as a metaphor for how pain and trauma and all the things that break us are also the things that allow us to come back together stronger and more beautiful.
I have never liked that metaphor.
I don’t think that after we shatter it is possible to return to the same shape we were before. In fact, I believe it is harmful to expect people to.
Nowadays, I put my trust in those who have reclaimed narratives of brokenness. I agree with Audre Lorde who believed that giving into the cultural expectation to conceal your broken body can be another way to undermine your power.
Lorde writes in The Cancer Journals about how she refused breast reconstruction after a mastectomy because she believed that there was something revolutionary in opposing the dictate that she make the physical evidence of her illness disappear. “Socially sanctioned prosthesis is merely another way of keeping women with breast cancer silent and separate from each other,” she said. “What would happen if an army of one-breasted women descended upon Congress?”[xiii]
I believe like Lorde did that a broken body has a semiotics and a value of its own and that it can be a political act to own that brokenness, to claim it. Just like Lorde experienced pressure from medical professionals to become ‘normal’ and ‘beautiful’ again after her mastectomy, so too do people who are injured experience pressure to cover over our pain or beautify our scars. To hide the symptoms of our disabilities or to claim that our disabilities and pain were important learning experiences on a linear path to progress. To hide too the ways in which we have been broken by ableism.
As someone with an invisible disability – it is possible for me to hide. In fact, hiding would make my life much easier. Except the problem is that I am simply not ashamed of the fact that my brain works differently than it used to. And I’m privileged enough to bear the risks of being public about that.[xiv] By claiming my ‘broken’ body publicly I am saying something political. I am saying simply but forcefully -- that it is not a bad thing. I am saying that my broken body does not make me less than anyone else. I am saying that the discourses that say that it does are fictions whose function is to marginalize me and others like me. In fact, I am saying that the discourses that say those things are forms of violence. And that they too are things that have broken me.
‘Breaking’ is a thing that happens to bodies. It is the height of magical thinking to imagine the body as inviolable. My body will likely break again someday. And my body might heal too. Or it might refuse again to recover. Hiding the ways that bodies ‘break’ will not change that. It will not protect me from being broken. It will not magically heal me. Not thinking about bodies that break and do not repair will not protect you either. It will only leave us rudderless when our bodies do break, it will only leave more people desperately trying to force themselves into recovery or cripspiration narratives.
This refusal to acknowledge and tell different narratives about the ways that bodies break and do not repair is what made people call me a liar. Its why they didn’t have scripts to follow to understand the proper way to show empathy and care to people disabled by illness or injury. Its why invisible and intermittent illnesses are not understood. Its why many disabled people live in poverty. It contributes to why courts fight to keep disabled people off disability benefits. It also contributes to why employers discriminate against disabled people.
The stories that do not talk about broken bodies, that only value those broken bodies after they are fixed or successful in normative ways are the scaffolding that upholds the marginalization that I have experienced and that others experience far worse – especially those who endure intersecting forms of oppression.
And like many disabled activists before me, I refuse to participate in this fetishization of intactness any longer. I refuse to participate in anything that alienates me from my body as I am living in it now and might continue to live in it for the rest of my life. I would rather look closely at the broken pieces and figure out what new structures can be made from them. I would rather use my words to make you trace my edges and be cut by them -- so that you can understand viscerally the ways in which I have been hurt by the stories you tell about injuries and illness. I do not want anyone else to be hurt by those stories. And I do not want to be hurt by those stories anymore.
It’s time to be honest about our history as a storytelling species. We have told ourselves stories in order to harm ourselves and others. We have told ourselves stories in order to hide operations of power and ideology and oppression and inequality in seemingly benign feel-good inspirational tales. We tell stories to cast people aside – not to save them. But it doesn’t have to be that way.
Reading Epistemic Injustice by Miranda Fricker only confirmed for me how much justice is about stories. About telling the right ones. That’s why I don’t want to just reclaim the word broken. I want to build an aesthetics around the jagged pieces that are left behind after a break. Because I won’t I do the world any favours by painstakingly putting myself back together every time it breaks me just so that I can tell a story that’s more palatable to those that did the breaking. I have tried that. The world kept breaking me.
Choosing an aesthetics of brokenness for me is about choosing to write about disability and injury and ableism in a way that refuses the imperative of recovery, in a way that refuses the imperative of progress, in a way that refuses the imperative of attaching redemptive meaning to suffering, and in a way that refuses the demand that bodies get better but instead demands the world do so.
(I will not use my gold to cover over your harm any longer).
I first started writing about my disability on Twitter.
It started tentatively. I wrote tweets and then deleted them. Did one write about one’s disabled body publicly? How would that impact my future job prospects?
I was terrified. But I needed to do it. I needed to write myself a story that I hadn’t found yet. A story that reoriented how I thought about pain. A story that said explicitly how the worst part of my injury wasn’t that my body didn’t recover but the way people treated me.
When I started writing about disability online, I began to refuse the stories about injury and recovery and disability that I encountered offline too. No, I said to people who assumed I was recovered because I looked fine. No, I said to people who yelled at me when my body could not do what they wanted. No, I said to people who told me to feel ashamed about my disability.
Those words did not come for nowhere. I found the words I needed in the disabled friends that I made on Twitter. In their responses to my tweets. In my responses to theirs. In the offline moments of silence between us on the phone when we struggled to articulate what people or structures were doing to us.
Eventually, new friends that I made offline and online, disabled and non-disabled helped me find the pieces that had broken off of me and picked them up and gave them back to me. Or they gave me their own broken pieces. Here, they said, is how you fight back against ableism. Here is how you set a boundary. Here is how you criticize the stories our culture tells about your body. You are enough they told me and handed me back a piece. You are valuable, they said and handed me another. Even with your disability. And also because of it.
This discourse of brokenness is not mine. It is a discourse that has been gifted to me by others and that I have added to. That is what I love about disabled aesthetics – it is just as interdependent as we are. It is evolving and we are all constantly adding to it as we work toward a world that is more just – one where there are names for the things that happen to disabled people. Where there are better stories for us to use to tell you about our lives. Stories that you will understand more easily because you’ve heard them before. Because they make up a shared cultural knowledge.
I write essays about invisible disabilities often now. I write them as interventions. I write them to try push back. People say that the way I write about ableism helps them stand up to it in their own lives. And people say that the way I write about ableism helps them be less ableist.
This aesthetics of brokenness we are cobbling together is a political act. It is shifting things. It is opening things up. It is taking the recovery narrative and smashing it on the floor rather than taking non-recovered bodies and discarding them. It is refusing to give into ideas that bodies are only valuable if they function in a way that is normative and productive. Or if they inspire through overcoming. Or if they don’t ‘inconvenience’ anyone.
Ultimately, what we are doing is owning brokenness as just another part of being human. And if we keep doing that, if we keep working in that direction, perhaps someday we might finally be able to tell enough stories to blot out recovery narratives and expose them for what they are. Perhaps one day, if we hold close to the broken pieces, the stories we tell culturally about health and illness and injury and disability will actually allow us to live.
(You might be wondering about these parentheses, Reader. They are my broken fragments. They are my sharp parts sticking out, disrupting the flow of this essay. They are meant to mark you. They are meant to change you).
(Have they changed you yet?).
[i] Didion, Joan. The White Album. New York : Noonday, 1990.
[ii] Frank, Arthur W. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press, 1995. Page 77.
[iii] Frank, Arthur W. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press, 1995. Page 85.
[iv] Sontag, Susan. Sontag, Susan. Illness As Metaphor. Farrar, Straus, and Giroux, 1978. Page 1.
[v] Tremain, Shelley. Foucault and the Feminist Philosophy of Disability. Ann Arbor: University of Michigan Press, 2017.
[vi] Fricker, Miranda. Epistemic Injustice: Power and the Ethics of Knowing. Oxford: Oxford University Press, 2006.
[vii] Foucault, Michel. Discipine and Punish. London: Penguin Books 1977, 187
[viii] Guilfoyle, Michale. The Person in Narrative Therapy: A Post-Structuralist Foucauldian Account. London: Palgrave MacMillan, 2014. Page 37.
[ix] Guilfoyle, Michale. The Person in Narrative Therapy: A Post-Structuralist Foucauldian Account. London: Palgrave MacMillan, 2014. Page 37.
[x] Ryan, Frances. Crippled: Austerity and the Demonization of Disabled People. Brooklyn: Verso, 2019.
[xi] Barokka, Khairani. ‘How Colonial Visual Cultures Have Worsened This Pandemic and What Needs to Change.’ Disability Visibility Project. April 13, 2020, (www.disabilityvisibilityproject.com/2020/04/13/how-colonial-visual-cultures-have-worsened-this-pandemic-and-what-needs-to-change).
[xii] Ahmed, Sara. Living a Feminist Life. Durham: Duke University Press, 2017. Page 180.
[xiii]Lorde, Audre. The Cancer Journals. San Francisco: Aunt Lute Books, 1997. Page 16.
[xiv] It is important to note that not everyone is able to be public about their invisible disabilities and that doing so can actually lead to significant consequences for many people – especially those who experience other intersecting forms of oppression.
The views expressed by Open Book columnists are those held by the authors and do not necessarily reflect the views of Open Book.
A.H. Reaume is a Vancouver-based fiction writer who reads too much and is currently in too many book clubs (four in total). Reaume has a background in feminist activism and an M.A. in Canadian Literature from UBC. She's been published in the Vancouver Sun, The Globe and Mail, USAToday.com, and Time.com and is currently trying to finish her first novel.