Hi, there! Welcome to another “Shortlisted,” in which we talk about my minor frustrations with finding a community in online spaces.
But before we do that, I have a bit of minor news. “If I Can Deal So Can You” has a new webpage called “Resources and Other Stuff”, which you can find here. It is as it sounds: it’s a page listing some outside resources. My reasoning behind the decision was that, even though this is a relatively small site, there was a possibility that this could be the first point of contact for some people who maybe have just been diagnosed. If that is you, I welcome you with open arms. However, I certainly don’t want people confined to what this website is, which is my general opinions about how people with epilepsy are treated on a daily basis. This site is my catharsis and is not necessarily meant to provide helpful information all of the time; hence, the purpose of “Resources and Other Stuff”. The page will be constantly updated, and it will be there for whoever needs it. I also welcome suggestions, so leave comments on the page if you know of some relevant resources that might be helpful to others.
So, I’ve been thinking about what it means to form a community around a particular identity. Some of you may disagree, and that’s fine, but I do see epilepsy as more than a disease. I see it as an integral part of who I am, and I think having that discussion about what it means to be epileptic is worth everyone’s attention.
Throughout this last year, I joined a few Facebook groups for people with epilepsy, and while they’ve been welcoming and supportive, I find that there’s something still missing for me. When I started participating in these groups, I was under the impression that it would serve as a space to organize and form a community that would exist both on- and offline. Perhaps it’s me, in that I always seem to associate community with mobilization towards enacting social change. Based on that history, I always assume that people who are aware of being treated poorly may want to do something about it, even if it’s a small gesture. However, it seems that these groups function as more of a call into the void. People in these groups don’t necessarily want to take action, but they need someone who gets them to listen. I completely understand that, and I have searched for similar relationships in my daily life.
However, because of the way these platforms are built, a person will post their statements of concern or fear over their experiences and people respond accordingly, but the initial post is inevitably buried by hundreds of similar statements. Additionally, the conversation seems to be dominated by the larger actors that aren’t even meant to be there: the doctors we work with, the families that are affected by us, and the medication we take every day. This is vital information and worthy of attention, but it makes me wonder: why don’t we talk more about what it means to be epileptic? Why don’t we talk more about ourselves, and even if we do talk about ourselves, why can’t we talk about this in the open? Sometimes, talking in these groups feels like talking in a room with no ventilation. We’ve been consuming the stale air around us for hours when we could have opened a window.
I’m still working through my reactions regarding these online groups, and I will definitely post a full-length article in about a month detailing this experience further. While I believe in the power of social media, I do think, at this point, these groups leave something to be desired. It is difficult to enact change in even small ways if no one takes the initiative to move beyond the boundaries of a closed group.
This isn’t my stance against social media; social media does great work. Perhaps what I’m saying is that simply calling into the void just isn’t enough.