How Colonial Visual Cultures Have Worsened This Pandemic and What Needs To Change
The people holding parties instead of social distancing. The girl in my apartment building, casually hanging out in a cordoned-off public area. The man who delivered my groceries, who told me “It’s just like the flu” in passing, unaware I’m high-risk as a chronically ill person.
We’ve witnessed global waves of non-disabled people refusing to socially distance during the COVID-19 pandemic, including by crowding public spaces, and otherwise endangering themselves and vulnerable people. This presumption that many such people have, that they are “healthy” and invulnerable, stems from centuries-long conditioning by ableist, racist, colonial systems of visual cultures. By visual cultures, I mean the way visual images (particularly of humans) are presented to us by, and in, colonial societies, whether in advertising or television or paintings in museums. This is something I’ve been researching for almost a decade–and experiencing first-hand, as an “invisibly” disabled person, who is often not believed about my body, or forced to give up sensitive medical information for others to ascertain belief.
These systems work to ingrain these assumptions in people en masse: that someone is non-disabled until “proven” disabled by non-disabled norms. That these norms of whether or not a body is “abled” are visual, uniform, and detectable always by the non-disabled. And that disability is not likely to be experienced by a “healthy” person, particularly in their youth. These assumptions have proven catastrophic, and inciting many of the deaths we witness in the COVID-19 era.
The manifestations of these centuries-old systems of colonial visual cultures, that claim a non-disabled person can “tell” when a person is sick, can determine that socially-variable distinction between the “sick” and the “healthy,” that young people are “healthy,” that what they deem to be “sickness” is not that bad: the deaths of tens of thousands at this point, and most likely, unfortunately, up to millions in places like my home country Indonesia. There and elsewhere, poor public policy implementation on behalf of the state is also, I believe, a result of these prejudices rooted in visual cultures.
How have we gotten to this tragic point?
I’ve spent the past nine years performing, making visual art, and writing about my continued traumas as someone whose pain has been “undetectable” to non-disabled people, including doctors in medical settings, even when it is at ten out of ten in terms of intensity.
I write and speak about how the central, core thesis of my PhD–that there is the possibility of pain in every picture, especially in images of enslaved colonial subjects, especially in bodies coded as brown and femme–has been met with defensiveness and/or disbelief and/or the need to couch that possibility in “visible signals.” Meaning, if someone is sitting in a tilted manner, that might show discomfort. Yes, because every person you meet is possibly in discomfort–regardless of “cues.” Think about times you’ve been emotionally turbulent but still had to smile in front of people at work or at home, perhaps your children, perhaps your friends. Think about women masking our period pains around people who aren’t likely to understand them. Think about headaches you’ve had while smiling at someone else. Think about non-disabled understandings of what “counts” as signs of “underlying health conditions”–a term often used in ableist ways during this pandemic, to denote the bodies of people who are disposable or should be spoken about but not deliver opinions ourselves.
And the reason for these ableist biases stems from colonialism and beyond–the message is that Black and brown people who can be and are coded as “abled” can better perform the tasks of capitalism and churn out profit. These racialised bodies coded as “abled” are positioned above those visually coded according to non-disabled norms as “disabled,” and “abled” bodies also can never show signs of being vulnerable–again, because of colonial capitalism’s needs for our bodies to perform a function, to extract labor from us.
This is why Black and brown women and femme people in particular are often disbelieved about our pain in medical settings—because we have historically not been deemed human and capable of pain. Because our historical position has been to serve, and to serve, we must be coded as “able” to do so.
So here we are in late stage capitalism, in an era when surveillance is ubiquitous, when austerity measures globally are reducing funds for disabled people, and when it has been suggested that social media profiles be used to determine whether or not people are no longer depressed, when in the UK my peers have to “prove” their level of physical pain to the government in humiliating fashion on a regular basis. Everything is linked to colonial visual cultures’ need to have us all thinking and feeling in an ablenormative (that is, assuming people are non-disabled, and that we all must behave in non-disabled fashion) way–that we can always tell what someone is feeling on the inside, based on their outsides. When as human beings we know fundamentally this is a lie.
A long time ago, I was in a New York City ER, screaming in pain, when a nurse yelled in my face on the gurney to be quiet, that I was bothering the other patients. This traumatic incident, along with so many others like it in which I have had my pains dismissed, disbelieved, and thus exacerbated for long periods over years, inculcated in me the understanding that I shouldn’t show “normal” signs of pain, because people wouldn’t believe me. In a London clinic a few years ago, when I screamed, I was yelled at until I became quiet on the bed, as the nurses thought I was committing an act of aggression against them. I have been threatened with being reported to the police when I’ve shown signs of extreme pain in public, mistaken for being a drug addict. It matters that I’m a brown woman. It matters that as a non-citizen in the UK, not eligible for public funds nor many state sources of access, I am deeply vulnerable. This is why, when people make blanket statements like the assumption that those of us “passing” as non-disabled have it better off, I’d like to caution against painting experiences of “passing for healthy” with the same brush–think about people with cancer, think about people with endometriosis, think about people with acute chronic pain, think about people who are consistently threatened with deportation and/or incarceration, where lack of access to medication could well mean death.
Although I greatly appreciate Transport for London’s “Not All Disabilities Are Visible” campaign the truth is that many so-called “invisible” disabilities ARE visible–but visible to the person with them, not the non-disabled people around them. I have to stop and sit or squat every ten steps or so and rest, yet my disability is deemed “invisible,” and I am told “I don’t look like a disabled person,” as opposed to someone with a cane or a limp, or someone who is older.
If I’m honest, I fear for the many “invisibly” disabled I imagine must be impacted by this pandemic, and injured again and again by it–those of us who don’t “look sick” and therefore might not be seen with urgency. Those of us who don’t “look disabled” and therefore have had difficulty getting vital access needs met, whether in line for food or in transit. As disabled people know, it is so often not worth complaining about these experiences to corporations, especially in a hyperprivatised world, even if we attempt to shame and bring attention on social media to bring about change. Corporations who will neglect our inquiries.
This is the culmination of centuries of visual ablenormativity. I’d argue that we’ve been hurting and/or losing millions of lives over the years due to complications of this toxic, visual ablenormativity–just not aggregated, not treated as mass calamity.
And in during this COVID-19 pandemic, in which disabled populations are being killed and jeopardised needlessly by irresponsible governments, I know in my heart that there are many who should have gotten better help earlier, but didn’t “look sick.” There are many who underestimate COVID-19 because it is an invisible virus, because they think they are invulnerable healthy people and so is everyone in their circles. And that continues to be proven a lie in the death toll and the state of the world today. And it is no surprise to see the most marginalized communities disproportionately impacted by race, disability, age, nationality, immigration status, and class.
“Underlying health conditions” is often synonymous with “invisible” disability in this pandemic, as something non-disabled people greatly fear, and must be stamped out because it automatically leads to death, no matter what. Yet the blame does not lie often enough, in the media nor among conservative politicians, on the lack of government funding for healthcare including PPE (personal protective equipment), lack of urgently needed public health advice dissemination, and so on. These causes of death are still being elided in certain mass news outlets, whether in Indonesia or the US.
At the same time, governments can continue to cruelly tell people with “invisible” disabilities that we’re not disabled enough to warrant being high risk, including in this pandemic. In the UK, people who were high risk were all supposed to have gotten a letter indicating their status, if they registered with the government–this was not at all a comprehensive effort, as myself and peers have not received such a letter. The overall policy means that people with “invisible disabilities” are being told by states such as the UK to be shielded, which is accurate for our safety–though I wish more people would understand shielding as a verb that still, always, needs to include patient voices as self-shielders, and not just those of everyone else around us–but are not always helped by the state.
What is necessary right now are pained-aware, decolonial readings of other people, other bodyminds, and of ourselves. In being aware of the fact that truly anyone can be disabled, in pain, that there is the possibility of pain and/or of many bodymind variations in every person we meet, and, in everyone we see depicted in art or in the news.
Visual cultures in everyday life and especially in arts institutions have led up to this tragic point. We can combat these forms of ableist visual bias in ourselves and other people, seeing the possibility of vulnerability in every person, not to mention becoming more sophisticated in how we term “disability.” This could truly be the difference that saves lives.
Dr. Khairani Barokka is an Indonesian writer, artist, and researcher in London, with a PhD in Visual Cultures from Goldsmiths, whose work has been presented extensively, in fifteen countries. She was Modern Poetry in Translation’s Inaugural Poet-In-Residence, and is currently Researcher-in-Residence at UAL’s Decolonising Arts Institute. Among Okka’s honours, she was an NYU Tisch Departmental Fellow and is a UNFPA Indonesian Young Leader Driving Social Change. Okka is co-editor of STAIRS AND WHISPERS: D/dEAF AND DISABLED POETS WRITE BACK (Nine Arches), author-illustrator of INDIGENOUS SPECIES (Tilted Axis; Vietnamese translation published by AJAR Press), and author of debut poetry collection ROPE (Nine Arches Press).
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