How Disabled People Care For Each Other When Doctors Can’t

Caring

 

By David M Perry in Pacific Standard.

 

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

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 AwardIt’s currently streaming on PBS until January 23rd.

 

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