How does the internet facilitate the telling and receiving of genetic stories? What is the role of cyberspace in shaping the ‘geneticisation’ of our lives? What work does the internet do in creating communities around genetic conditions?
These were some of the questions with which the
ISERP Narrative Genetics seminar grappled during a recent presentation by
Alice Wexler on the narratives of Huntington’s Disease. Wexler’s historical research on what was then called “St. Vitus’ dance” or “magrums” focused on Huntington’s small town origins in East Hampton, NY where many prominent families were affected by the disease. She also discussed a particular, isolated community in Venezuela that is a modern day cluster for Huntington’s Disease-affected families.
Which is when the conversation turned to the internet, a medium which has in many ways redefined the meaning of the word community. For individuals with disabilities, or sufferers of illness, the internet provides potential connection with distant friends and family, with others experiencing similar conditions, with medical research and medical professionals that may not have been otherwise accessible. In many ways, the internet is the antidote for the isolation that so often accompanies disability or illness. From simple email, to social networking portals, to gaming sites like second life, cybernetic communities enable those experiencing illness or disability to connect, give voice, share research, advocate, and organize. It enables someone who might not have physical mobility to essentially travel the globe, or even embody a cyber-self, an ‘avatar’, with an entirely different set of embodied identities and abilities. Admittedly, these possibilities are not without potential complications. As
Tod Chambers has written in his essay "Virtual Disability: On the Internet, Nobody Knows You're Not a Sick Puppy" (which appears in Lester Friedman's collection
Cultural Sutures: Medicine and Media), cyberspace challenges the authenticity of the suffering voice; this is a place where one can wear a mask of disability or illness, draw other sufferers close, and create communities which are vexed by troubling issues of 'the authentic' and 'the real.'
These issues notwithstanding, for genetic conditions, the internet appears to function in particularly powerful ways. (Consider the existence of this very blog!) For instance, those experiencing a particularly rare genetic condition, who might have never met another patient with the same illness due to issues of distance, now have the potential to not only connect to others but organize communities, discussion groups, and advocacy organizations. For those with autism-like, immunosuppressed, or heavily infectious conditions, the internet provides connection without physical togetherness. Consider the crucial role the internet has played for young people with cystic fibrosis. As Kayla Rachlin Small has both presented to the seminar and written in the
New York Times , individuals with cystic fibrosis are often discouraged – even forbidden – from being physically together due to the infectious risk CF sufferers pose to one other – where a rare bacteria that is harmless to the general population might in fact become life threatening if passed on to another CF patient. Here, the internet is a powerful medium for the CF community – allowing individuals access to one another in ways otherwise impossible. The internet not only unites people otherwise separated by space, but by time. Whether around the world in a different time zone, or suffering a rare sleep disorder such as
Klein-Levin syndrome, where an individual may sleep up to 20 hours a day for weeks or even months, the internet permits connections that are, in a sense, beyond the constraints of simultaneity. (The parallel, of course, between genetic and digital "codes" cannot be lost upon us, perhaps a topic for another blog).
Clearly, there are limits to cybernetic communities. There is a difference between a cybernetic hug and a real one, a emoticon and a tangible, embodied emotion. However, it is impossible not to recognize the critical importance of the internet in narrative genetics. The stories we tell – and are able to hear – about genetic conditions would be quite different if not for the medium of cyberspace. The postmodern communities that we form are different, yes, than the Huntington’s cluster of East Hampton, NY, yet they are a critical part of how we understand, experience and organize around genetic conditions today.
