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How Disabled People Care for Each Other When Doctors Can't - Pacific Standard

How Disabled People Care for Each Other When Doctors Can't

In her new film Unrest, Jennifer Brea offers a groundbreaking look at the power of community where medicine falls short.
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Omar Wasow and director Jennifer Brea at Sundance

When Jennifer Brea was 28 years old, she got sick and spiked a fever of 104.7 degrees. The fever went down, but soon she found herself overwhelmed by exhaustion and unable to function. It took a year and a half to get a diagnosis, but eventually she discovered three things. First, she had myalgic encephalomyelitis (also known as chronic fatigue syndrome, abbreviated CFS/ME). Second, through taking videos of her experiences and using video-chat to connect with others who share her condition around the world, she found a community and a mission. Third, most doctors routinely mis-identify CFS/ME, no one really understands the mechanisms of the condition or how to treat it, and no one is allocating the resources to find out.

CFS/ME affects millions of people. In the United States, research into the condition gets less federal funding than research into male pattern baldness. As Brea found out more about her illness, she discovered that it fell into a long history of "women's diseases" that, at best, doctors considered psychosomatic hypochondriac hysteria. At worst, women with conditions like CFS/ME have been institutionalized, a practice that extended throughout the 20th century and continues even today. So Brea got to work. She joined and helped expand a global online network of people with CFS/ME and their families. She helped organize the #MillionsMissing campaign to draw attention to the condition. Now, working from her bed over video chat and via remotely monitored cameras, she's made Unrest, a documentary about Chronic Fatigue Syndrome that's been shortlisted for an Academy Award. It's currently streaming on PBS until January 23rd.

Where do pain and struggle fit into narratives about disability in the 21st century? For decades, disability rights activists have pushed back against the notion that disability inevitably means suffering. Backers of the "social model of disability" argue that people are disabled by societal choices rather than by individual physical, medical, genetic, or neurological conditions. For example, according to the social model, a wheelchair user's ability to enter a building depends on whether or not there's a ramp, not on whether or not they can walk. The "cultural model of disability," in turn, identifies disabilities as components of identity, to be no more denigrated than (for instance) race or sexual orientation. Academics and activists have promoted these and related ideas to push back against dehumanizing narratives of pity, worthlessness, and inspiration porn, in which the struggles or achievements of a disabled person are co-opted to serve as inspiration for conventionally abled people.

But what about pain? What about conditions like CFS/ME that might confine a person to bed for years or decades? Over the past few years, I've been observing more and more people wanting to claim disability without stigma as a core part of their identity while not shying away from frank conversations about pain and other forms of suffering. This kind of effort isn't new, but online tools have enabled otherwise marginalized voices to enter the conversation. Brea, for example, directed this film remotely. She connected to families in England and Denmark, going "on location" without leaving her room. As a result of these technologies and networks, people who might have been socially isolated in previous eras can now connect with one another, build community, organize global protests, and even direct Oscar-nominated documentaries. Unrest is the kind of cultural production that takes advantage of all the wisdom of the disability pride movement. Brea levels a savage critique of society and medicine for failing people with CFS/ME, all while stripping away any barriers between the audience and her own raw pain.

The documentary opens with Brea's illness. We watch as she shifts from a life that she understood as "normal" to one spent mostly in bed. She's baffled by her condition, as are the doctors she consults. She's told that her problem is stress, then dehydration, and later is diagnosed with a "conversion disorder" supposedly caused by distant trauma. Here the film starts to shift from Brea's personal experience to a broad historical and gendered lens. The accusation that women's medical conditions are psychiatric in origin reflects long-held patriarchal biases embedded in Western medical practices. These biases have led (and still sometimes lead) not just to a lack of useful care but even to forced institutionalization, as we'll see. Doctors, as Brea found, often dismiss CFS/ME as a minor mental problem or decide that the patient is faking their illness.

In the documentary, Brea responds to the deficiency of her doctors by searching for community. She rapidly taps into a global network of YouTubers, Twitter users, and other people who talk about their conditions online. We meet them, get to know their families and how they make sense of their lives, and see Brea and her husband—Omar Wasow, a professor of politics at Princeton University—work through their own experiences. She tries various treatments, experiences mini-relapses, then struggles again. In her newfound online community, though, Brea starts to find her way. It turns out this is very much a social/cultural model of disability film after all.

In the heart of the documentary, Brea dives into the case of Karina Hansen. Hansen is a young Danish woman who was ripped from her home by police officers as a teenager. With the support of the state, a psychiatrist had Hansen involuntarily committed in 2013, deeming her condition a kind of modern hysteria. It took years for her to be released back to her family. The psychiatrist responsible for imprisoning Hansen, Dr. Per Fink, sounds almost like an early 20th-century eugenicist, offering diagnoses of "functional disorders" rather than searching for a medical cause. Brea also introduces us to Whitney Dafoe, a Californian man with CFS/ME who's living in particularly acute distress. Dafoe's father turns out to be the Stanford University geneticist Ronald Davis. In a bid to help his son, Davis is now trying to get National Institutes of Health funding to research his son's condition—so far to no avail. These stories culminate in the #MillionsMissing protest, a worldwide effort to shift government attention to CFS/ME.

Brea is far from the only person with CFS/ME telling her story. In early January, the film was screened on PBS and accompanied by a Twitter chat under the hashtag #UnrestPBS. It's easy, perhaps, for abled individuals to dismiss such social media events as promotional gimmicks, but go read the tweets. CFS/ME often results in isolating individuals physically, so the power of communication—of being seen, of being heard, of connecting—can be transformative. It's trite, of course, to say that representation matters. But it does. I've heard from dozens of people with both CFS/ME and related, stigmatized or overlooked conditions, for whom watching Unrest was the first time they'd seen their lives represented well in mainstream media. It's not always easy, seeing your battles laid out on screen, but it clearly matters.

One of those people is my wife. She has fibromyalgia. It's a chronic pain condition, found mostly in women, for which there is no other clear cause. Like CFS/ME, the condition is often dismissed as hypochondria. I wish my wife didn't hurt. But I also love my wife and my marriage. This disability, then, is part of what I love. As we watched the documentary, especially as Brea and her husband articulated similar sentiments, my wife and I sometimes silently touched hands. Like Omar and Jennifer, we both teared up from time to time.

When it comes to disability, we face two contradictory forces. Structural ableism teaches us to devalue ourselves when we deviate from norms. Disability culture, in contrast, opens up new ways to find meaning in an unexpectedly altered life. Unrest makes that process visible in the experiences of Jennifer Brea and her global community. Meanwhile, the battles to treat Chronic Fatigue Syndrome properly are just beginning.

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