Disaster Voyeurism

I believe in bearing witness. In many ways, that’s what Occupy CFS is about. Everyone suffers in this life, but bearing witness to another person’s suffering is a sacred act. To bear witness is to absorb the sufferer’s story, to accord that person her dignity, to connect her to the world, and to build the foundation for justice. Bearing witness honors our humanity.

But today, I face a dilemma: will my intention to bear witness be understood and received as I intend?

I am in New Orleans and struggling with how to bear witness to the suffering that resulted from Hurricane Katrina. I’ve read everything I can and seen every documentary about the hurricane, the breaking of the levees, and what happened after the flood. I could draw a map and show you where the levees broke. I could tell you how our government – at all levels – abandoned the people of New Orleans. I’ve learned a bit about the culture of New Orleans, and I can tell you why I think it must be saved.

There are bus tours of the Lower Ninth Ward so that tourists can see the neighborhoods. There is also at least one non-profit that can arrange personal tours of the devastated areas and the rebuilding. I feel drawn to this. I will enjoy my stay in New Orleans, but it feels wrong to enjoy the city and not honor what her people have endured. But it also feels wrong to ride through someone’s neighborhood like it was a zoo.

There is a heartbreaking scene in episode 3 of Treme where a few Mardi Gras Indians are singing to memorialize one of their members, recently found dead in the wreckage of his home. As the small group is singing, a tour van pulls up and the people inside start taking pictures. The bus driver asks “What’s this about?” and Albert responds, “What’s this about?” pointing to the van. The driver responds that, “People want to see what happened.” The mourners tell him to drive away, and after a moment the driver responds, “I’m sorry. You’re right, I’m sorry.”

I don’t want to be that person on the tour bus.

But I also don’t want to pretend that there is no need to bear witness. I don’t want to pretend that everything has been patched up, lives have been rebuilt, and I can stay in my nice hotel and relax while on vacation. That ostrich approach happens to me all the time. So many people in my life – doctors, friends, casual acquaintances – have assumed in one way or another that everything is ok. Yes, Jennie is sick and housebound. She can’t work or drive a car. But she looks great! Everything must be alright! And I do my part to contribute to that assumption. I try not to complain about the burden of this illness on my heart and my life. I say “I’m ok!” (with a certain tone that a few dear friends know means I am not really ok). I give meaning to my suffering through speaking out. I try to flow my life around CFS like a river flows around a boulder.

I believe that the failure of people to bear witness to the suffering caused by CFS perpetuates our history of inadequate research and medical care. When people truly see what CFS patients and their families endure, then they respond with action and support. I’ve seen that in my own life, and in CFS politics. Once you get it, you take action. It is also true that CFS has gotten more press attention in the last few years, and some of that coverage has come with an overtone of “look at them” finger-pointing instead of compassion. That “tour bus” approach doesn’t help us.

I share my story on my own terms, and I hope people will bear witness. Part of me feels like I should do the same for those who endured the hurricane, politely waiting for them to bring it up. The other part of me feels like I should show up and be present, so that they know I bear witness to whatever they wish to share (or not). I believe that our country abandoned this city to its fate before, during, and after the storm. Rebuilding is not over. Suffering is not over. Yes, money is coming in and rebuilding is happening. But the population of New Orleans almost seven years after the hurricane is 25% lower than pre-storm figures. This city has not finished recovering, and I assume the same is true of her people. That pattern should sound familiar to the CFS community. Our government has abandoned us to the storm of CFS, failing to invest the resources needed to help those affected and find a cure.

So here I am, in a hotel in New Orleans. How do I honor the people of this city? How do I bear witness without cheapening what they have endured and turning it into a sick tourist attraction?

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One Response to Disaster Voyeurism

  1. MDavis says:

    This sounds familiar to me or sort of. The CFS/ME community has never had even the briefest of spotlights turned on us. No support from The Brad and Angelina’s of this world (New Orleans) or indeed The Elton Johns (HIV/AIDS support). Major celebrities are unaware of us even still. The general public is largely still unaware of our plight.
    Nancy Klimas has stated publicly that she would rather have ME/CFS than HIV at the present time but no one has listened or heard her. Have the celeb’s and the worldwide media diverted their coverage to the millions of desperate sufferers worldwide? No.
    CFS/ME is one of the largest multi – national disasters of our time – destroying the lives of millions of sufferers and also their families.
    I sympathise with the people of New Orleans, for I too know the heartache of what it feels like to have everything you know ripped from around you and to see people die from it. To lose everything in a day – yes a day – to CFS/ME. I remember the day that my hurricane struck – 3rd. April 2007 – 5 years ago with no resolution and NO HELP OR SYMPATHY OR UNDERSTANDING.
    You really have to live through something awful to understand something awful. My thoughts are with everyone who is suffering out there, whatever the cause xx

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