CN: chronic illness, police brutality, racism, mental illness, medical neglect, forced stay at mental institution.
Note: This blog post heavily references a specific article that goes into far more detail of the above topics than this one does, in addition to a number of other heavy topics such as sexual assault, addiction, and domestic abuse. The article referenced does not include a content note.
Three or four years ago, I somehow came across an article that had a tremendous impact on me, on my activism, and on my understanding of myself, for years to come.
“Sick Woman Theory” by Johanna Hedva demonstrates how many aspects of social justice and the structure of society and even just human existence are interconnected: Disability, chronic illness, police brutality, racism, sexism, the medical system, the mental health industry, intergenerational trauma, socio-political theory, the medical and social models of disability, spoon theory, capitalism, and self-love. I struggled to choose which quotations to pull because nearly every sentence contains incredibly important truth that I want you all to hear.
If nothing else, read this article for its exquisite descriptions of the chronic illness experience. This article did wonders to validate me during a time that I frequently felt useless and alienated because of my pain. Her descriptions of navigating the world of doctors and diagnosis’ and medications should be very enlightening for any healthy people unfamiliar with that experience.
This article defies summary but I am going to attempt to summarize it.
Note: To my readers new to gender-neutral terminology, Hedva uses they/their pronouns, which means my use of “they” will frequently refer to a single person.
Methods of Protest
Hedva starts their by discussing the lack of options for methods of protest for sick and disabled people, or at least methods that are socially sanctioned, that count as “real activism.”
“The inevitability of violence at a demonstration – especially a demonstration that emerged to insist upon the importance of bodies who’ve been violently un-cared for – ensures that a certain amount of people won’t, because they can’t, show up. Couple this with physical and mental illnesses and disabilities that keep people in bed and at home, and we must contend with the fact that many whom these protests are for, are not able to participate in them – which means they are not able to be visible as political activists.”-- Johanna Hedva
When I first read this article, I was still adjusting to my new life as a disabled person and to trying to reconcile my desire to have a real impact on world issues while navigating my disability. It would be dangerous for me to try to participate in a march or protest. Even if no violence broke out or no accidents occurred, standing on concrete all day would be terribly painful for my body. I had encountered a lot of judgment about using internet activism as my alternative to traditional protesting. I was told that choosing not to attend a protest on behalf of other marginalized groups (such as the Black Lives Matter protests Hedva mentions), was retreating behind my privilege since the outcome of the protest didn’t affect me; my disability was merely an excuse.
And while in some ways, these criticisms were valid, Hedva points out that oppression also has a hand in preventing people from attending a protest, such as those who, “might not be able to be present for the marches because they were imprisoned by a job, the threat of being fired from their job if they marched, or literal incarceration, and of course the threat of violence and police brutality – but also because of illness or disability, or because they were caring for someone with an illness or disability.” To choose not to attend a protest was a privilege. To choose to attend was also a privilege. Hedva’s writing led me to believe that both are true.
It had been a few years since I had last read, “Sick Woman Theory” from beginning to end, so in order to write this summary, I re-read it carefully, jotting down the memories of the kind of impact specific concepts had on me when I first read it, and how my impressions of the article had changed.
Since it was on my mind, I wanted to offer this article to a trans friend of mine who’s going through the process of accepting himself as a disabled and chronically ill person when I realized that the language of this piece isn’t necessarily gender-queer friendly since the title itself is explicitly gendered. Just a few years ago, pairing the word “woman” with another marginalization status was shorthand for “not cis white men.” But language has evolved and women are no longer the only variant to consider when thinking about populations affected by these issues. I thought perhaps the article was showing its age.
And then to my surprise, I found Hedva had already addressed my anticipated issue:
“To take the term “woman” as the subject-position of this work is a strategic, all-encompassing embrace and dedication to the particular, rather than the universal. Though the identity of “woman” has erased and excluded many (especially women of color and trans and genderfluid people), I choose to use it because it still represents the un-cared for, the secondary, the oppressed, the non-, the un-, the less-than. The problematics of this term will always require critique, and I hope that Sick Woman Theory can help undo those in its own way.” -- Johanna Hedva
Repeatedly, I was struck by how incredibly progressive this article was and still is. Social justice ages very quickly, especially now in the digital age. A word or concept that was productive five years ago can be seen as problematic now. The cycle of creating, evolving, and retiring words or concepts associated with social justice is one of many necessary processes in accomplishing social change.
Originally published sometime around 2016, Hedva’s article included concepts and terms that I didn’t fully understand when I read it through the first time, nor did I realize that I didn’t understand them. There were concepts that I only learned in my most recent year of activism, despite devoting large amounts of time in the last three years to expanding my knowledge in this area. There is no telling how many of these ideas I came across in this article before I saw them anywhere else. Hedva has wisdom to impart to me even now, years after the first time I read their work.
The Depth of Racism
Within the scope of this article, my activism was perhaps most impacted by the story of Kam Brock, a black woman whose experience interacting with our society’s legal and medical system was eye-opening, to say the least. Hedva tells the story much better than I can, but the short version is this:
Brock was suspected of driving while high on pot, and after no evidence that this suspicion was true could be found, police impounded her car. She was upset when she picked up the car the next day, which was apparently enough to persuade the police to have her involuntarily hospitalized in a psych ward. There, doctors came to the conclusion that she had bipolar disorder and forced her to take psychiatric medication and attend therapy, among other inhumane treatments, for eight days. She was later billed for her time spent in the hospital.
Part of privilege is not recognizing just how bad your quality of life can get. There are white men who object to being called white men and see this “insult” as somehow comparable to oppression. If you are raised with a certain level of privilege, you can go your whole life without knowing that oppression is not a matter of hurt feelings or even intense suffering. It’s constant sources of trauma, incarceration, homelessness, suicide, starvation, violence, death by medical neglect, or death by lack of health care coverage (otherwise known as death by medical neglect.)
“Without the structural drive to overpower and push down the “lesser” group, racism looks like nonsense.”
I’ve worked to educate myself on what the worst versions of life look like. I’m not naive about the severity of suffering that’s possible for humans to survive or how often the victims of oppression actually do not survive due to circumstances that should be entirely preventable were society structured differently. But Kam Brock’s story still shocked me.
As I’ve discussed before, we all move through life looking through a lens that distorts what we view as normal, what conclusions we jump to, who we trust and who we doubt. If you succeed in putting that lens down, or at least eliminating a large portion of its influence (because none of us are ever done de-programming our biases) the story of Kam Brock makes absolutely no sense.
If you do not start out with a significant level of trust in our legal system or the cultural bias that black women are inherently unstable and untrustworthy, then it’s clear that there was no reason for Kam Brock’s car to be taken away or for her to be institutionalized. The biases of the mental health professionals (a job I have a great deal of respect for) against women of color were so severe that they created a pathology that wasn’t there and forced treatment on her for this non-existent pathology. They thought she was totally detached from reality, while Kam Brock was flung from one institutional power to the next; to one person after another unconsciously biased by race and gender so thoroughly that it rendered them incapable of making effective decisions on life-changing matters. Brock was traumatized by a cascade of judgment calls that were far more disconnected from reality than she was, and she paid them for the privilege. Without the structural drive to overpower and push down the “lesser” group, racism looks like nonsense.
This is one of the stories that I return to in order to remind myself of the expansiveness of oppression and the nightmarish domino effect of ensuring that it is white people who are almost exclusively in charge of deciding who thrives, who suffers, who lives, who dies, while their whiteness protects them and disconnects them from reality.
“The Sick Woman is an identity and body that can belong to anyone denied the privileged existence – or the cruelly optimistic promise of such an existence – of the white, straight, healthy, neurotypical, upper and middle-class, cis- and able-bodied man who makes his home in a wealthy country, has never not had health insurance, and whose importance to society is everywhere recognized and made explicit by that society; whose importance and care dominates that society, at the expense of everyone else.”-- Johanna Hedva
Hedva does an incredible job of conceptualizing the way the physical and the theoretical world is divided into spaces where people belong and spaces where people do not. It is this idea that is the basis for Sick Woman Theory.
“Again – who is allowed in to the public sphere? Who is allowed to be visible? I don’t mean to diminish Rachel’s horrible experience – I myself once had to wait ten hours in an ER to be diagnosed with a burst ovarian cyst – I only wish to point out the presumptions upon which her horror relies: that our vulnerability should be seen and honored, and that we should all receive care, quickly and in a way that “respects the autonomy of the patient,” as the Four Principles of Biomedical Ethics puts it. Of course, these presumptions are what we all should have. But we must ask the question of who is allowed to have them. In whom does society substantiate such beliefs? And in whom does society enforce the opposite?” --Johanna Hedva
Just the statement, “I deserve to be here,” carries the implication that there are people who do not deserve to occupy this space. “I should have this,” implies that someone else should not.
Privilege is by definition something that not everyone has. Creating a privilege includes drawing up criteria for who has access to it and who doesn’t. To name a few referenced in Hedva’s article: Who has the ability to enact political actions? Who gets to decide what words are used to describe themselves? Who receives validation for their lived experiences? Who gets to be successful? Who is the reference for developing mental illness diagnostics? Who receives appropriate treatment for mental or physical illnesses? Who gets to protest when they do not receive these privileges? Who makes the decisions about who receives these privileges? Who enforces those decisions?
In this context, I like to think of privilege as a Square; an actual physical space to which access is granted based on a set of qualifications decided by a handful of white men hundreds of years ago. If society has granted you privilege, you are allowed in The Square. If society has marginalized you, you cannot access The Square. You move through a life that quite literally was not built for your existence.
One of the defining reasons that Kam Brock’s doctors declared that she was detached from reality was that she said that (then President) Obama followed her on twitter. While this was a bogglingly easy fact to verify (because it was true), it was also a declaration of a level of success not usually associated with black women, and certainly not black women arrested by police for emotional instability. In Kam Brock’s story, institutional forces in our society were doing a double take as they discovered that this black woman had the audacity to occupy the space of success while expressing naturally occurring emotions-- privileges rarely afforded to most black women. She had stepped inside The Square. They definitively ejected her back out of The Square with enough force that the trauma would keep her from ever contemplating entering The Square again.
“Sick Woman Theory is the idea that there are no qualifiers for being inside or outside The Square, nothing you have to do to earn it, nothing you have to fix or heal, no worrying about being not enough or too much.”
That is the purpose oppression serves. Oppression is partially a natural side effect of building a world that only suits the needs of certain people thereby neglecting others, but it is also an intentional tool to keep the wrong people out of The Square and to punish those who try to enter it.
To tie this back to chronic illness, it is hard enough just to suffer the intolerable and frustrating symptoms of a long term illness. No matter how good of treatment you receive, being sick sucks. But after a lifetime of absorbing attitudes such as the one Hedva so beautifully describes, “When being sick is an abhorrence to the norm, it allows us to conceive of care and support in the same way,” or that our value is determined by productivity or that you should expect any severe sickness to be cured and so if it hasn’t been, the fault lies with you-- you don’t just experience your symptoms at face value. You have to battle them. You fight them with the idea that they shouldn’t be there, that you shouldn’t be here. It can feel as if your body is The Square, it has decided that you do not belong, and it is trying to push your consciousness, your Self, out of it once and for all.
Sick Woman Theory is the idea that there are no qualifiers for being inside or outside The Square, nothing you have to do to earn it, nothing you have to fix or heal, no worrying about being not enough or too much. “Deserve” is no longer a judgment of worth because your existence guarantees you deserve everything inside The Square.
But because we still have institutional systems enforcing the idea that The Square is an exclusive club whose membership is granted on basis of the lottery around the circumstances of your birth, the act of entering The Square without prior sanction by society, is an act of rebellion.
Johanna Hedva gifted me the idea that in a society that revolves around productivity and money making, by lying in bed and doing nothing, I am holding my own private revolution. Just my survival as a sick person, as a marginalized person, is a big Fuck You to the systems I seek to overturn.
Caring for yourself is a radical act, especially for the marginalized. Being unapologetically who and what you are, tending to your own well being as well as that of others, refusing to stop existing in the space you deserve; those are the methods of protest afforded to you.
Please go support Hedva, as I would not have been able to write this blog post without the education of their writing. Writers are best supported by increasing the size of the audience that their work can reach, which is easily accomplished by sharing their work and following them on social media. You can read more of Hedva's writing on their website, and you can follow them on twitter and instagram.