The Revolution Starts with Trust: A Refutation of BBC’s short film, Sickness and Lies

I considered not watching the film.

For one thing, I had already heard about Sickness and Lies, because it was widely criticized and lambasted by disabled and chronically ill people on social media upon release. As a broad swath, I would characterize the general reaction as extremely pissed the hell off.

And with good reason. My disabled, mentally ill, and chronically ill peers and I have much experience with the sinking panic that comes from being hit with disbelief in our most vulnerable moments. We know how debilitating, defeating, and infuriating this feels, just like we know that this kind of sinking panic can push human beings into a desperate hunger for validation because the absence of it means physical, emotional, and financial suffering. If you are sick, and someone tells you that you’re lying, you are likely going to fight to prove yourself to them — especially if they are the one holding your pill bottle.

But I also considered not watching the film because the title was blatantly sensationalist, and I assumed that a piece of media titled “Sickness and Lies” was going to be far more focused on the “and lies” than on any of the “sickness.” Think about it. Any title with “and lies” on the end of it communicates that whatever else is being discussed is under scrutiny for possible dishonesty.

Behold:

The Five Love Languages and Lies.

The Great British Baking Show and Lies.

War and Peace and Lies.

See?

But I did watch the film. I watched it with a slight hope I would be wrong in my predictions and assumptions. That perhaps, even knowing the reaction to it by others I trusted, I would see something, even something tiny, that would surprise me is in it’s value.

~

Sickness and Lies was released on August 5th, 2021. The film follows Octavia Woodward, a disabled 23 year old journalist, as she investigates claims that so-called “chronic illness influencers” on social media are faking their illnesses in order to make money, feed their ego, or both. Throughout the film, Woodward interviews a few chronically ill people who are on social media, focusing on those chronically ill people who were targeted by a reddit group called “illness fakers.” “Illness Fakers” has 80,000 members who spend their time discussing whether sick people on instagram are actually sick.

“Illness Fakers” isn’t just a nasty gossip thread, (though it isn’t not that). The film shows us that certain members of the reddit group became so fervent in their desire to uncover lies (or whatever they tell themselves) that they began online harassing the sick people they were discussing, sometimes stalking or doxing them or their friends.

About halfway through the film, Woodward (who does her best but would have better served the world using her talents elsewhere) interviews the founder of the group and asks her the question most of us want to know: Why?

One time, the founder shares, she had a friend copy her illness. And the experience was painful. The founder goes on to defend the group, saying that “toxic people” are inevitable and the good work of the group outweighs the harm. She also points out that many of the members of the group are disabled and chronically ill people themselves.

Depending on who you are, this fact might be surprising. Learning this did not surprise me, personally, but it did break my heart, because it underlines the problem: disabled and chronically ill people like myself know that the world is deeply invested in not believing us. In response, attacking our own becomes a defensive coping mechanism that channels our own fear of invalidation towards anyone who may prove the cultural bias against us right.

I am not without empathy for this. But understanding the emotional trauma-logic of a situation doesn’t absolve the individuals involved from some amount of personal responsibility. Neither does it absolve Sickness and Lies, or those who worked on the film, from the impact of their creation.

This includes a limited selection of specialists, doctors, and researchers that were brought in for interviews. Woodward spoke with professionals studying “factitious disorder,” the more infamous disorder, “Munchausen by Proxy,” and the most recently created disorder, “Munchausen by Internet,” so titled by psychologist Marc Feldman.

However, there was a notably large absence in the film of experts who would have been useful, such as specialists on cyberbullying, disability justice advocates, scholars on ableism, transphobia, sexism, and racism in the medical industrial complex (as only one example, Black women are most likely to be disbelieved by doctors about the severity of their pain). Sickness and Lies could even have given us interviews with professionals who could explain the psychological reasons behind why some redditors chose to create a subgroup called the “munchpool” where they placed bets on when and how public-facing chronically ill people (who they call “munchies” after munchausen by proxy) would die.

A project’s sources and creation process (not to mention title) matter. I do not believe BBC’s choice to stack specialists whose work directly or indirectly legitimates the stereotype that chronically ill people are duplicitous was an ignorant mistake or some poor attempt to “be objective.” There is no such thing as neutrality. You can’t do it on a moving train, as Zinn put it, and you can’t do it in a media project funded by the BBC. The filmmakers were tipping their hand.

Sickness and Lies ends sloppily, because Woodward closes by telling the viewer in so many words, Well, maybe this doesn’t matter? What do we really know about people, anyway? Doesn’t matter if they’re on Instagram or not, let’s just leave sick people alone, regardless of if they’re on Instagram or not.

If only they’d come to this conclusion before they spent time and money doing the exact opposite.

~

Ever since I watched the film, I’ve been unable to stop thinking about our cultural fixation on the possibility of dishonest people in our midst. Sickness and Lies is focused on excavating potential charlatans claiming chronic illness online, but the film’s messages are rooted in the larger belief that people are regularly faking what they do and say. Our society is obsessively invested in a world where we must all prove we deserve life. Need food? Prove it. Need medical care? Prove that you are sick. Need a house? Prove you have a job. Need a job? You’d better have an address.

This ideology shows up in multiple other contexts as well. If you ever went to school in what’s known as the United States, you ought to recognize some of these scenarios:

Fellow educators have said to me over the years: I just know they’re lying. I always respond with one question:

So what?

~

The idea of anyone being innocent until proven guilty is certainly a nice one, but unless you are a white, straight, able-bodied cisgender man, it’s more myth than reality. We live in a culture far more preoccupied with the idea of catching liars than with the practice of seeking understanding, accuracy, and accountability.

Depending on who you are and what prescribed boxes you fall into, you are assumed to be a liar before you are trusted. Educators and parents alike say young people have to earn my trust. Black men and boys are widely assumed to be “criminals.” Black women are assumed to be overly emotional or too angry to be taken seriously. Poor Black and Brown people are presumed to be cheating the system in order to receive financial assistance for food and housing. Undocumented immigrants are presumed to be lying about why they need to come to this country. Mentally ill people are assumed to be too “crazy” to be telling any kind of truth. Transgender people are accused of “tricking” cisgender people into attraction or lying about their gender in order to hurt unsuspecting cisgender women in a bathroom. And disabled people? Disabled people are assumed to be lying about our diagnoses, our symptoms, and our accommodation needs.

This is, of course, not an exhaustive list. Many people fit into every single one of these oppressed groups, compounding the times that the validity of their experiences is always in question. And then, there’s white women.

Because white women are also women, we are routinely presumed too sensitive or crazy to be truthful. However (and this is a big however), white women have a despicably bad track record of lying and using emotional manipulation as weapons against Black people, especially Black men. After all, white men believe white women’s complaints only when the complaints align with white supremacist, transphobic, homophobic, and ableist beliefs about people of color, queer folks, trans folks, disabled folks, and others. If Emmett Till had been a white man, Carolyn Bryant’s accusation would simply have been another Tuesday in a world where sexual assault allegations bounce off white men who are on their way to being sworn into office. And for any survivor of sexual assault who is a person of color, of indigeneity, or queer or disabled or oppressed in other ways, their chances of being believed all but disappears entirely.

The throughline: if a group of people is oppressed, the oppressor will actively - and openly - question the oppressed group’s credibility. For if the oppressor were to validate claims of oppression, they would be forced to admit that, ope!, they were always the ones behind the mask. And they would have gotten away with it too, if it wasn’t for us stinkin’ (disabled and/or queer & trans and/or people of color and/or working class and poor) kids.

Except most of the time, they do get away with it.

~

On one level, this is a review of BBC’s film, Sickness and Lies, but on another level, I want us to reckon with something much bigger: our culture’s toxic belief that people are lying about their struggles if said struggles cannot be overcome through a little elbow grease and bootstrapping.

America’s reverence for individualism can be revelatory and inventive, allowing for personal expression and even, in glimpses, liberation. But at the same time, this individualism is rooted in a dangerous value that insists we alone are fully responsible for our circumstances. Years ago, a student of mine shared in class that he thinks homeless people could get a job but they choose not to, out of laziness. I offered back that it is understandable he would choose to believe this, because it is simpler, and more comfortable, to believe someone is lazy than it is to interrogate what it says about our morals that we can sleep in warm beds while others freeze to death on the street. And it’s easier, and more comfortable, to believe that people are not really sick, or really disabled and/or chronically ill, or really harmed by being deadnamed, or really oppressed for being gay, or really denigrated and threatened by an anti-Black society.

But…

But what about the people who are actually lying?

Yes, there are people who are lying about the facts of their situation. There will always be people who do this even if it harms themselves or others. There is an exception to most every rule, and the reality is that some people lie, and they will continue to do so. There will also always be, for whatever deeply unfortunate, morally bankrupt reason, people who are more interested in a small smattering of people who are lying than in the literal millions of people who are telling the truth.

I am not interested in being distracted by either of these groups of people. I’m uninterested in vultures masquerading as people, the ones with their “munchpool” reddit threads and inability to offer critique that isn’t behind someone’s back. They are the ones who have to live with the loss of their own humanity, not me. Neither am I interested in those actual, real liars beyond a recognition that I want to build (and live in) the kind of world where no one would need to create a false reality in order to get love and attention. For if anyone is lying profusely and elaborately about being sick, they aren’t really lying; they are clearly struggling and they deserve compassion, care, and accountability — not vitriol from strangers on the internet.

Instead, any harm done through these types of lies should be dealt with by those who are directly involved, and no one else. The entire internet, the entire global world, does not need to be called in to play rogue detective on people’s Instagrams in the mere hope of catching someone as they publicly hit rock bottom. Doing so — yes even if you do find people who might be embellishing a little — isn’t going to turn the world into one that leads with trust, or stops demanding people prove their right to exist, or prioritizes people and relationships over profit and subjugation, or believes people who say they are in pain or were harmed.

Trusting people will.