«I know you have been saying to yourself «If I really couldn’t stand up, why would I be filming it?’ Well I kind of think that someone should see this.»
We hear the voice of Jennifer Brea pronounce these words slowly and with a great effort, as we observe from an uncomfortable closeness how she is struggling in vain to raise her body from the floor.
«More than 85 per cent of all patients with ME are women.»
In this intimate first-person documentary, the independent filmmaker who «from as early as I can remember, wanted to swallow the world whole» as she says, narrates about a mysterious illness that confined her to bed.
When she was twenty-eight years old and working on her PhD at Harvard she met the love of her life, but only months away from getting married a fever left her bedridden. Doctors told her it was «all in her head», but conditions only got worse. It was at this moment that she picked up her camera. The story she tells is a personal story about her unique life experience. «I really don’t want to die, but at a certain point it’s hard to call this living.»
ME – A complex disease
Unrest is also much more than a personal story. The film uses home videos and photographs, as well as television archival material and video material of other patients and their families. However, the story is mostly through Jennifer’s eyes, be it with her personal camera, or through the Skype video chats that enabled her to connect to other people suffering from the same illness all over the globe.
«I really don’t want to die, but at a certain point it’s hard to call this living.» – Jennifer Brea
Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome, is a devastating disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. It often follows an infection and leaves a great majority of those affected unable to work. They remain homebound or even bedridden.
There are more than one million in the US and between 15 and 30 million people worldwide suffering from ME, yet their condition is often not even considered a disease. We see a young girl, Jessica – who has the bones of a one hundred-year-old woman and cannot even place her feet on the floor – as she is trying to explain to Jennifer via Skype how she manages to remain sane. At the same time we hear CNN’s Larry King calling Chronic Fatigue Syndrome «the yuppie flu». The suffering of those with ME is thus multiple, and the film’s great power is its ability to present this complexity.
«The powerless are those who are looked at. »
At the beginning of the film, we meet Jennifer’s husband Omar Wasow, an IT-expert, while he and Jennifer are rushing to the Princeton Hospital. When they’ve arrived, Omar explains to Jennifer his concerns about communicating to a doctor about the disease: «Just you have to be careful. If you say too little they can’t help you and if you say too much they think you’re a kind of mental patient.» This scene clearly defines the approach of Unrest, one that is unique and innovative. The film manifests the awareness of its own limitations: the misunderstandings around ME become the essence of communicating about it. This awareness is also the source of the film’s powers.
Strikes a blow for more visibility
More than 85 per cent of all patients with ME are women. Made from the private space of Jennifer’s bed, the film represents very well the helplessness of its’ subjects. It also corresponds perfectly to the position women and medical patients traditionally have within the visual field: they are confined to private space, made invisible to the public and are passive (in this case, even immobile) objects of the active – male and/or medical – gaze. But Unrest subverts these roles: Jennifer Brea is the one making this film, and she is active and visible.
More so, visibility is the main purpose of her actions, from her initial ambition «that someone should see this» to her final claim that «the only way anything is ever going to change is that people can see us.» She manages to mobilize the duality of the visual field – the eye and the gaze – and makes it work to her advantage. Helpless and immobile as she is, she discloses the public aspect of the ME sufferer’s private and passive condition and shows that their private suffering is subjected to power relations in such diverse spheres as the family, science and politics.
«Visibility is the main purpose of her actions.»
Power relations work in the visual field too. Those who look, say, men or doctors, have the power to define what they see, while the powerless are those who are looked at. Unrest is therefore not only about a particular illness, but its about the struggle of women in general (and others who traditionally are the passive objects of the viewer) to take over the active role of watching and stop being just looked at. Only this will change the view, and, as Jennifer Brea shows so smoothly, enable what matters to them most to reach public awareness.
Unrest is available on netflix: https://www.unrest.film/watch#digital