Communities of Support

It's important to remember that there are online communities are much more than just being in a fandom. For many people, the only place that they can find people to relate their struggles is online. Online communities, help people to know that they aren't alone in what they're going through. This became apparent to me when I followed my friend, Maddy, on Tumblr and I began to see her posting things related to her chronic illness. I noticed that she reblogged encouragements and stories from others with chronic illnesses and interacted with them. While I had seen her go through dealing with this illness, as a healthy person I couldn't begin to truly understand or relate to her struggles with it, so seeing into this little community that I didn't know existed really struck a chord with me. Since I can't accurately describe what it's like, I decided to ask Maddy a few questions about her experiences with the community of people with chronic illnesses online.

 1. How long have you had a Tumblr?

I signed up on my 16 birthday after being pressured for a year by my friend. I had just started getting into Doctor Who so she said getting an account was mandatory.  

2. How long have you had POTS and can give you give a brief definition of the disease? I’ve had POTS for about five years now. I got it during my freshman year of high school as a result of some serious virus. POTS stands for Postural Orthostatic Tachycardia Syndrome (you can see why we have to shorten it) and it’s a form of Dysautonomia. So basically your nervous system has two parts: somatic and autonomic. Somatic controls your voluntary movements (like muscles) and autonomic controls…well pretty much everything else (heart rate, blood pressure, breathing, digestion etc). In POTS the your autonomic nervous system doesn’t work the way its supposed to which leads to a lot of problems. Here’s a link if you want to know more details: 

3. What's the difference between a chronic illness and just being sick?

Well as the name suggests chronic illness are chronic. They are long-term illness, meaning they can last from a couple of years to a lifetime. The difference between a chronic illness and just being sick is that you can get over being sick. With chronic illness you’re kind of stuck with it everyday. For people trying to understand what this is like imagine having a bad cold or flu, except it never goes away. Some people say the world chronic illness is the nice way of saying “incurable”, and it’s kind of true. With a lot of chronic illnesses all doctors can do is prescribe medicine to help with symptoms. You just kind of have to readjust your life to accommodate it.

4. Do you follow a lot of people on tumblr who have chronic illnesses? Do you think it's large community?

I think I follow mostly fandom blogs, but I do follow a handful of people who also have chronic illnesses. When I first found this community I thought there would only be a couple people. However my time on Tumblr has shown me it is much larger than I initially expected, probably in the hundreds.

5. How did you find this community? Were you surprised to find them or did you know it existed and sought it out?

I think one day I was having a hard time dealing with my illness and was curious if anyone on tumblr was going through something similar. So I typed in POTS to the tags search bar and lo and behold thousands of posts came up! I was so surprised and so happy to find them because I had felt alone in my struggle for a while. 

6. Do you feel like you're part of a community online of similar people?

Yes I do feel like I’m a part of this community. We are similar in our experiences, struggles, thoughts, as well as some other interests.

7. Do you know anyone irl that has the same illness as you?

No I don’t know anyone in real life who has POTS. I think it would be super cool if I did, but for now I’m happy with the online friends I’ve made. 

8. Has being online and finding others in similar situations as you helped you cope with daily life?

It really has helped me cope with a lot of things. If I’m having a bad day I can just go online and vent to people who I know will understand what I’m going through. There is definitely a comfort factor knowing you’re not alone. 

9. Are online communities (any kind) important?

In my opinion yes they are important. They bring people together and create a sort of family or support system that some might not have outside the Internet. They also serve as a great conduit/platform for ideas and creations. 

10. Do any other online communities define you, if so which ones?

On Tumblr I’m apart of a lot of fandoms for a whole bunch of TV shows (I couldn’t name them all even if I tried). The main ones are Supernatural, Doctor Who, Sherlock, and Merlin. I also consider myself a part of the Nerd Fighter and science online communities.

11. Do you think kids should be encouraged to find online communities to connect with?

As long kids are smart about it I do think they should be encouraged to find online communities to connect with. They are great ways to make connections with people who have similar interests. They are also good places to express yourself through whatever form. I think some kids feel isolated because the people around them don’t like the same things, think the same way, or are going through the same things etc. Online communities can fix that and give them a sort of family that they otherwise wouldn’t have access to. 

12. Any thing else you would like to say about the impact of having a community of ppl w/ chronic illness, or other communities, or something you think people should know?

This is probably going to sound cheesy but here it goes: If anyone reading this is going through something whether it be illness or something else I hope you realize you’re not alone. There are whole networks of people here on Tumblr and other places that you can access practically anywhere at any time. 

On another note I think everyone should read about something called the Spoon Theory. It’s a sort of analogy that explains what it’s like to live with a chronic illness. 

Comics and Tumblr

Comic fans makeup a large portion of the many sub communities on Tumblr, but they are one of the few that stem from an already decades old fan base. Comics don't reach the mainstream media the way that they used to in their hay day, so they have to change to mold with the current technology and trends. Tom Ewing talks about an example of this with the recently ended comic Young Avengers and it's fan base on Tumblr. Many of Marvels comics have become less about the big moments- butt kicking, action, big reveals- and more about the everyday interaction between the teenage characters. Because of this, Ewing says that Young Avengers gained a reputation as a “Tumblr type of comic”. While on its own, this is somewhat of a back handed comment he goes on to claim that Tumblr may very well be the future of Marvel.

Overlapping Communities 

Tumblr offers a community that is much different from the traditional comic book audience of the 60’s, 70’s and 80’s. The majority on Tumblr actually correlates to minorities on other platforms; a greater number of users are people of color, queer, teenaged and the majority are female. It’s also a place where users interact in fandom, and can do so in a more complex and intimate way than in the past because it occurs on a social media platform. Since the fans are more diverse they will demand more diverse content, no need to pander to the same action clichés to drive profits. Fan culture means that characters are more greatly appreciated by fans that crave complex characters. Ultimately, all of this means a shift away from the focus on epic moments that has been so prevalent in super hero comics in the past to more complex and subtle stories. Since these kinds of fans are driving the markets for so many things, including comics, it makes sense for the comic industry to try and please them. And it's beneficial for the community to demand more interesting, and diverse stories.

Technology Evolves Fandom and Content

Even though I’m personally not in the Marvel or comic community, this article is a perfect example of how a community can be shaped by technology and how that evolving community can in turn shape the medium that the community is centered around. Social media, in this case Tumblr, allows many different sub communities to come together and have more of a voice than they could on other platforms. There is a huge community of LGTBQ individuals and every minority you can imagine who all love to be fans just as much as ‘traditional’ audiences, and as these people gain more voice they are slowly demanding greater representation in media. In the case of Young Avengers, it’s popular on Tumblr because it has such a diverse range of characters.  These are characters that all fans can identify with and love to analyze. Since these fans love to devour more complex stories and characters rather than just action packed male power fantasies, comics will have to shift in order to maintain a market.

Resources:

Ewing, T. (2014, January 10) All Our Friends: aka is there a Marvel Tumblrwave? Retrieved from:     http://freakytrigger.co.uk/wedge/2014/01/all-our-friends/

Culture Under the Rocks

What and Why

Many well-meaning adults talk to us young-people about how technology is ruining society, how social media is at best frivolous and worst stupid, and all around discrediting a huge part of society today. What people who aren’t involved in anything online don’t realize is that there is an entire complex world of culture and subculture that exists within the circuitry they are so afraid of. Sure, the internet-verse is silly, and has plenty of offensive things, but it’s also a place where communities can form that could not exist without the technology. Not only do these communities exist, they change lives, make art, and give the underrepresented a voice.

This blog will talk about various different online communities, analyze how they use the technology that is relevant for them, how they change that technology, and showcase things they are doing that contributes to culture. Instead of just talking about vague groups like “the Tumblr community” or the “YouTube community”, we will focus on communities that exist beyond the platform they choose to use. What I mean by that is I’m particularly interested in sub groups that have used social media to band together and form communities in new ways. For instance, YouTube is much more diverse than just sketch comedies and cat videos, and each niche has it’s own unique community. On Tumblr, smaller fandoms and marginalized groups can be heard where they can’t in mainstream media. I’m also interested in discussing the way online media as whole is different than traditional mainstream media. Over all, the internet is a diverse place with many different kinds of cultures that are all accomplishing amazing things that are worth being discussed and showcased.

About the Author

I’m Katie, an 18 year old college student studying arts and technology. In recent years, online communities have become a big part of my life, and I feel that is the case for many people. I have YouTube channel, and I really love online video. As I became more involved in the YouTube community and saw the flourishing of many other communities online, I became more interested in what makes them tick and how they affect people’s lives.