Health

A Film on Chronic Fatigue Syndrome That Tells a Story We Don't Normally Hear

Beyond the candy fluff of ‘Women’s Day’, Unrest raises the bar for feminists, disability rights activists and their allies.

Early on in the documentary film Unrest (2017), Jennifer Brea, the filmmaker and protagonist, preempts a question to the camera, recording her struggling to manoeuvre herself on her bed.

“I know you might be saying to yourself, if I really couldn’t stand up, why would I be filming it? Well… I kind of think someone should see this.” Unrest is a revelation of gaze and filmmaking at the intersection of disability and gender, more particularly gender roles. The film is the experience of myalgic encephalomyelitis (ME), more commonly referred to as “chronic fatigue syndrome”, narrated by someone experiencing the condition. That narration is stark and pulls no punches. There are parts of the film that follow Brea and her husband, through their various attempts to understand, cure and manage her condition over the years, that are overwhelming by virtue of how deeply personal they are.

After a good streak of health, capped by a triumphant afternoon celebration with the alumni and faculty members at Princeton University, she is curled up in a foetal position. Brea has relapsed. She is sobbing and wailing, still in her orange Princeton t-shirt, with her husband crouching next to her looking despondent. As a viewer celebrating her success, the transition evokes a visceral reaction from the viewer. The helplessness the couple shares is real, honest and contagious.

Turning the camera on gender roles

Most documentaries regarding disability focus on the medical condition itself or on the individual – but retain the commonality of being seen from the lens of the able-bodied. Persons with disabilities are excluded from many opportunities. The ability to tell their own stories is one of them. Accounts of the lives of persons with disabilities are rightly dismissed by persons with disabilities themselves as “inspiration porn” and for being Oscar bait. But by turning the camera on herself, and on others who have this condition, Brea owns the narrative and manages to elicit empathy instead of sympathy.

Doing this with ME is no easy task. The film was funded via Kickstarter, “shot” over four years using iPhones and Skype. Its most poignant and uncomfortable moments are those shot in the style of cinéma vérité. It appears that Brea began recording herself to counter the gaslighting of her experiences by medical professionals, a theme that other respondents in the film also speak of.

Gender is as much a theme of the film as disability is. The viewer is introduced to Omar, Brea’s spouse, through smiling wedding videos and “how we first met” anecdotes. Omar’s identity to the viewer is entirely one of a caregiver and devoted husband until we are introduced to Omar Wasow, once considered one of the most influential people in cyberspace. We are left to ponder the costs to Wasow, and perhaps to cyberspace in general, on account of the exclusion he and Brea faced because of her condition.

Brea spent years without a diagnosis and attempted several methods of controlling the condition, including living in a tent house. What the film does dwell on is Brea’s guilt as a spouse at “robbing” Wasow of his entitlements.

Gender roles as constructed are inherently ableist, assuming women to be caregivers in their role as wives. The camera stalks friends of the couple, talking about the joys of having children, while Wasow nods. Later, on Twitter, Brea spoke of an incident where a doctor took Wasow into another room and told him that it was “okay to leave her”. This comes as no surprise. Failure to perform gender roles can be considered to be grounds for divorce on the condition of “mental cruelty”.

Similarly, if a person has been suffering, intermittently or continuously, from a mental disorder “of such a kind and to such an extent that their spouse cannot reasonably be expected to live with them”, it can be considered to be a ground for divorce under Hindu marriage law.

Reclaiming the narrative

A brief history of ME is pieced together by Brea, who points to similarities in the diagnostic criteria for hysteria and conversion disorder, both mental illnesses themselves. Lee-Ray Denton, featured in Unrest, was ‘left’ by a husband who thought she was being lazy. It was only when their daughter was also diagnosed with ME, many years later, that he realised that this wasn’t “just in her head”. In Denmark, symptoms of ME are misdiagnosed as a mental illness and persons are institutionalised under mental health laws. This particular account in the film was problematic, as it implied that the forced institutionalisation of a young girl was an issue because she had ME and not a mental illness.

The present rights paradigm respects the rights of all persons with disabilities to live in the community with the support that they require to live independently.

Unrest is a film about people – primarily women – disabled by their condition. The campaigns that the film captured (like #millionmissing) and the campaigns that it has spurred both focus on whether the medical establishment has been aware of the condition, and the lack of funding to study ME and other conditions that disproportionately affect women. The prevalent discourse on disability worldwide is centred around the ‘social model’. It says that persons who have impairments (e.g., being unable to see, hear, or move as others without impairments do) are impaired by barriers in society that keep them from enjoying their life on an equal basis with others. This is opposed to the medical model, which focuses solely on the condition. Unrest reaffirms some of the skepticism disability rights activists have had with the social model, and shows that the health domain is still important for several constituencies among persons with disabilities, and that we can’t leave them behind.

One hopes that the discussion around Unrest will also include other barriers inhibiting the participation of persons with ME and not just treatment of the condition (as important as the latter may be). With no cure on the horizon, the stigma attached to the condition has prevented those who live with it from the receiving the kind of support they need.

Accommodating people with ME in schools, colleges and the workplace requires us to include what accessibility and reasonable accommodation means to someone with chronic fatigue. A beautiful part of the film shows Jessica, a teenager with ME, floating in an accessible swimming pool with the help of a trainer aware of her needs.

Advocacy must also discuss what additional support persons with ME require when they are in critical phases, unable to do much else, as well as ensure that their caregivers aren’t excluded from realising their own potential. India’s new disability law excludes ME and several other rare diseases and conditions as disabilities for the purpose of entitlements under the law, which means that the battle for rights is a little steeper here.

Beyond the candy fluff of ‘Women’s Day’, Unrest raises the bar for intersectional approaches for feminists, disability rights activists and allies. Even if you abhor the idea of a film that forces you into activism, it is – along with everything else – the reclamation of a narrative by a woman, with a heartwarming love story to boot.

Unrest is available to stream on Netflix India.

Amba Salelkar is a lawyer with the Equals Centre for Promotion of Social Justice. The organisation focuses on policy and budget advocacy towards furthering the rights of persons with disabilities.

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