It started with a Kickstarter campaign. A couple of veteran science/technology journalists, Jim Giles and Bobbie Johnson, wanted a place where people could do investigative, long-form sci/tech writing. But most general interest magazines had cut down their feature sections, while science magazines didn’t want to touch on the social and cultural implications of the work covered in their pages. So Giles and Johnson decided to launch a digital magazine called Matter. They asked people on Kickstarter to donate $50 thousand to launch the magazine. They wound up with over $130 thousand. People are hungry for good science writing that’s relevant to their lives.
At last, the magazine has launched. Last month, Matter premiered with an edgy, fascinating article from Anil Ananthaswamy. It’s about “body integrity identity disorder,” a condition where people want to remove perfectly healthy limbs — and are willing to pay underground surgeons to do it. New developments in neuroscience shed light on why a small but significant number of people suffer from BIID. Emotionally engaging and packed with scientific insight, the article is only $0.99 for your tablet or reader of choice.
Here’s an excerpt from the beginning of the article:
One night about a year ago, when he could bear it no longer, David called his best friend. There was something he had been wanting to reveal his whole life, David told him. His friend’s response was empathetic – exactly what David needed. Even as David was speaking he began searching online for material. “He told me that there was something in my eyes the whole time I was growing up,” David said. “It looked like I had pain in my eyes, like there was something I wasn’t telling him.”
Once David opened up, he discovered that he was not alone. He found a community on the internet of others who were also desperate to excise some part of their body – usually a limb, sometimes two. These people were suffering from what is now called “body integrity identity disorder” (BIID). With a handful of websites and a few thousand members, the community even has its internal subdivisions: “devotees” are fascinated by or attracted to amputees, often sexually, but don’t want amputations themselves; “wannabes” strongly desire an amputation of their own. A further delineation, “need-to-be”, describes someone whose desire for amputation is particularly fierce. It was a wannabe who told David about a former BIID patient, a “gatekeeper”, who had been connecting other sufferers to a surgeon in Asia. For a fee, this doctor would perform off-the-book amputations.
Scientists are only just beginning to understand BIID. The first modern account of the condition dates from 1977, when The Journal of Sex Research published a paper on “apotemnophilia” – the desire to be an amputee. The paper categorised the desire for amputation as a paraphilia, a catch-all term used for deviant sexual desires. Although it’s true that most people who desire such amputations are sexually attracted to amputees, the term paraphilia has long been a convenient label for misunderstandings: after all, at one time homosexuality was also labelled as paraphilia.
But there do appear to be a small number of people who feel incomplete with all four limbs. It’s difficult for most of us to relate to a notion like this. Your sense of self, like mine, is probably tied to a body that has its entire complement of limbs. When asked to describe his leg, David said, “It feels like my soul doesn’t extend into it.”
Neuroscience has shown us over the past decade or so that this sense of ownership over our body parts is strangely malleable, even among normal healthy people. In 1998, cognitive scientists at Carnegie Mellon University in Pittsburgh performed a deceptively simple experiment. They sat subjects down at a table with their left hands resting on a table. A screen prevented the subjects from seeing their hands: instead, a rubber hand was placed in front of the screen. The researchers then used two small paint brushes to stroke both the real hand and the rubber hand at the same time. When questioned later, the subjects said that they eventually felt the brush not on their real hand, but on the rubber hand. More significantly, many said they felt as if the rubber hand was their own.
The rubber-hand illusion illustrates how the way we experience our body parts is a dynamic process, one that involves constant integration of various senses.
Needless to say, the article has inspired a lot of passionate responses. Matter has met this head-on, organizing a two-part Q/A with the author so that people can ask him questions about everything from what happened to the subject of his story, to whether or not it’s problematic to write about these issues. This move is a fascinating comment on how accountability works when you use social media to propagate investigative journalism. Because author Ananthaswamy has become accountable not just to his subjects and the scientific community he’s covered, but also his readers/funders, who have questions of their own.
At a San Francisco event celebrating the launch of Matter, I asked magazine co-founder Bobbie Johnson about what’s coming next. Expect one article per month, covering everything from the political issues around environmental cleanup, to the anatomy of an elaborate digital scam arising from shady paycheck loan companies. This is a magazine that understands how science and technology intersect with our everyday lives, as well as our laws and social institutions. I’m looking forward to reading more.
Check out Matter on the web, on Facebook, and on their blog.
