The Machine and an Authentic View of Disability

          What I am drawn to most in Michael Wesch’s lecture “The Machine is (Changing) Us: YouTube and the Politics of Authenticity” (https://www.youtube.com/watch?v=09gR6VPVrpw), is the idea that he presents that new forms of community create new forms of self-understanding. Near the end of his lecture, just before his closing remarks, he says, “What we can do with the new environment is create new types of conversations” (Wesch 33:01). The new environment he speaks of, of course, is the social media environment, specifically Youtube.

            What I kept thinking of as I heard Wesch say this was the new types of conversations emerging through Youtube about disability and disease, and the idea of the new kind of hero that Wesch also speaks about. That’s not necessarily to lift those with disability or disease to a heroic level for living with disability, but it is to examine how the social media environment opens these once marginalized identities to a much wider community, and I mean community not audience. For the sake of disclosure, I am a cancer survivor and my daughter was born with a rare form of dwarfism.

            The heroic part in regards to disease and disability is the way individuals use the self-awareness aspect to not only build community, but to bring a wider community into the conversation where once the wider community was more of an audience. I think most specifically of the viral video by John Novick titled “Don’t Look Down on Me” (https://www.youtube.com/watch?v=mD_PWU6K514). Novick is an achondroplastic dwarf, and he tapes a short documentary that shows, with the help of a hidden camera that he wears under his shirt, what a day is like from his perspective. What we see is that, because of his short stature, people feel it is okay to invade his space without his permission and do so freely. A couple of times he’s told he looks like Zach Roloff from the TLC show Little People, Big World, though he doesn’t really resemble Zach at all beyond his short stature. What those instances show is that before the social media environment, the only context for a wider community, and discussion in that wider community, has been mainstream media. Therefore, that discussion has been filtered through the lens of mainstream media, rather than through what Wesch describes as the self-awareness brought about by the context collapse that occurs when there is a much narrower gap between the audience and whoever is in front of the camera.

            With this narrower gap then, we end up with very personal experiences like Novick’s that can open a dialogue about how we treat and view difference rather than just try to understand the difference by watching as an audience. That dialogue, prior to social media, might only have been confined to communities that form within these identities, but not necessary outside the identities. For example, little people meet with other little people through Little People of America, an awareness organization. Still, that awareness only reaches marginally outside the boundaries of the identity, perhaps to friends, neighbors, and extended family. As of this writing, Novick’s documentary had reached just over two and a half million viewers from all over the world, and it is much more than a voyeuristic view of life for little people like Little People, Big World seems to be. It’s more of an invitation to discuss and understand the identity through dropping the viewer right into Novick's first-person perspective. More than 3,000 viewers respond to the video, many of the responses are from people who know little about dwarfism, and they seem to at least begin broaching the harsh reality Novick presents. Thus, we see developing a vision of the new type of conversation Wesch might be alluding to in his lecture. We see the conversation reaching those outside the boundaries of the disability identity. It’s in this realm where it might be possible to affect a kind of change that goes deeper than audience awareness, and it’s in this realm where we might find the beginning of the “I care. Let’s do whatever it takes by whatever means necessary” (Wesch 33:24) idea that Wesch hopes this new social media environment will achieve.  

When Image and Identity Become One

     The biggest question I have after reading Eli Pariser’s essay “The You Loop” might be whether identity and image are in fact one and the same. Pariser begins his essay by quoting Facebook founder Mark Zuckerberg and highlighting Zuckerberg’s view that to have more than one identity means one might somehow lack integrity. My trouble in understanding this question of identity (or online identity) is in the whole idea of what is meant by identity. I’m not sure Zuckerberg even would have a full idea of this, though he might think he does.

     Looking at Merriam-Webster, identity is defined as “qualities, beliefs, etc., that make a particular person or group different from others.” For image, however, the definition reads “the idea that people have about someone or something.” I feel that what Zuckerberg refers to as identity is actually image. The Internet can only really have an “idea” of who we are. It cannot fully represent who we are as individuals. It cannot fully comprehend each and every identity. It should not, no matter what Zuckerberg thinks. Even Pariser writes that Facebook “draws on the more public self, it necessarily has less room for private interests and concerns” (115). While this might ultimately be a good thing for a user, it means what does appear on screen is an image, a partial image at that. I had a friend say to me once that it seemed like everyone on Facebook was happy, and it is true that so much of what is posted as “identity” or “image” are the things that make life look “good.” That, too, does not paint a clear picture of a person’s identity, because we cannot see all the nuances that shape an identity. For instance, my identity, my real identity, is shaped by the mistakes I have made as much as by any of my accomplishments, but nowhere on Facebook does it say, “Hey, let us know who your ex-husband is why he is your ex-husband,” nor would I want to display that kind of information on my page.

     Still, the danger of boxing people into a single image, and claiming that image is identity, is that in the cyber world the two are often, if not always, seen as one. It might even seem that someone like Zuckerberg prefers it that way. Although, his intention to make everything transparent seems less plausible if the identity is only really an image. Pariser does write “We’re now on the verge of self-fulfilling identities, in which the Internet’s distorted picture of us becomes who we really are” (112). This also means that an image perceived as identity is becoming identity. In some cases, perhaps that is true. People searching a page for professional reasons will likely make a judgment based on the electronic identity presented, which really is just an image. Pariser does say that the technology will no doubt move toward rounding that image out. He, however, cautions that that could present a much stranger cyber landscape than the image-driven one. Maybe, then, it is up to us to be aware that we must maintain the separation that Zuckerberg ultimately wants us to disengage from. We must be fully aware in this cyber landscape that image and identity are indeed quite separate.