Abstract:
This paper examines the effect that the rise in popularity of social media has had on individuals ability to find and create communities. Specifically, the effect this has had on disabled people and how it has made it communities easier to join and more accessible overall. We will first look at why community is so important and then move on to look at current examples on Twitch, Facebook, and YouTube. We will see how groups and communities for people from all walks of life have popped up across the world and the effect they can have on their members.
Keywords:
Disability, Facebook, YouTube, Twitch
Paper:
With the rise in popularity of social media the way that people some people can find somewhere to fit in in the world has changed. Instead of finding a clique in school, or joining a club to find people with similar interests, it is easier to go online and find a community full of people you can relate to. Social media is a great way to find and create these communities. With platforms such as Facebook, Instagram, Twitter, and YouTube all giving a way for people to create and develop a community. These features have allowed many people with disabilities to find a place where they can feel welcome, which they may not have been able to do as easily beforehand. Disabled content creators have a place where they can make their voice be heard, some using their platform to spread awareness and information.
Community engagement is essential for the development of younger people. Participation in what makes the core of a community, the social, economic, and cultural life, plays a vital part in the health and wellbeing of the younger generation. Evidence has shown that there is a large divide when comparing community involvement for those with disabilities compared against non-disabled people of the same age. Engagement rates for people without disabilities being fifty percent higher than the rates of their disabled peers. The reason for the large divide is believed to be the lack of accessibility methods for disabled people, along with the discrimination that they can face on a day to day basis. Research was undertaken by Carroll et al. (2018) that followed several young disabled people to study their community involvement, aiming to spread awareness about this topic. The results showed that most of the participants spent the majority of their free time at home, with some not leaving for anything but school. With community engagement being so essential for young people changes need to be made to help disabled people fit in better with their communities. However, since such a change will take time to implement, disabled people across the world have taken matters into their own hands by creating new communities online, offering support and friendship to those that need it.
Many social media sites now have a way to create groups and communities that can grow to be worldwide communities for people from all walks of life. The large numbers of communities means that no matter what interests a person may have, there will be a community out there full of people who feel the same. For example, there could be a large community for people who like arcade games in general, and a smaller community for people who like specifically Tetris. A common type of community amongst disabled people is what is known as a support community. Communities like these can offer people a place to find new friends, or emotional or informational support for people who need it. Disabled people have created many support communities for other disabled people to join to find a place where they can fit in and find people who can sympathise with the problems they may be facing. Meeting new people online can also, for some people, be much easier than meeting people in real life. People with speech or motor disabilities can find it more difficult to meet people offline (Pfeil & Zaphiris 2010). These communities fill an important gap in the lives of many disabled people. Social support is a key part of learning how to cope with disabilities and has been shown to lessen the negative impact disabilities can have on a person, along with their families. A survey was conducted in 2020 by Perkins et al. (2020) on the experience of people with Tourette’s Syndrome and Tic Disorders using online support communities. It was found that the online groups gave users an easy way to connect with other people with Tourette’s Syndrome and let them communicate with people from all over the world. The online support groups gave them access to around the clock emotional support if they ever felt like they needed help. It also gave users who could not previously access offline support groups a way to get the support that they need. Many of the participants even mentioned that the support groups gave a perspective on their disability that even medical professionals could not offer. Support groups are not the only type of communities created by disabled people. Creators on YouTube or Twitch have used the platforms to create a home for themselves. An example of this is the creator known as Rikki Poynter.
YouTube offers its users a platform for them to upload videos to, the videos can then be viewed by users across the world. Users of the platform can then watch the video, and if they like it they can subscribe to the creator so they can see when they post a new video. Some creators on the platform have reached over one hundred million subscribers, showing the size that creators on the platform can potentially reach. Similar to other platforms, YouTube can be used to create communities that all enjoy the creator or at least have similar interests. One such creator is known as Rikki Poynter. Rikki Poynter is a deaf content creator who has been creating YouTube videos for over 7 years (Rikki Poynter, n.d). She uses the platform to upload videos showing her story and the challenges she faces as a deaf person from day to day. Her channel is the tool she chooses to use to spread awareness and information about her disability. She utilises the platform to educate her viewers on the trials that a disabled person has to go through, and to create a community for other disabled people to come to if they need somewhere to go. Viewers have left comments on her videos thanking her for sharing her story and educating them about her disability, as well as ableism (Todd, 2018). While YouTube is a good place for creating and building a community, it does not have many features that enable communication between members of the community. Only the comments on videos allow for this, and most of the comments are talking about the video and are not the ideal place to find friends or talk with the community. Due to this many YouTube creators end up extending their community to other platforms to make communication easier. Platforms such as Discord are quite popular, which allows the creator to set up chat rooms for both text and voice making communication between community members much easier. Similar to YouTube in many ways, Twitch also lets its users create channels where they can live stream and build a community. There are many disabled creators on Twitch and there was research done in regard to the communities and identities of disabled creators on the platform.
Twitch as a platform allows its users to live stream themselves. Mainly used to stream video games the platform has millions of viewers at any one time, with the largest streamers getting upwards of fifty thousand viewers each day. Research was done by Anderson and Johnson (2021) looking into the lives and streams of eight different disabled streamers on Twitch and how they have built their communities on Twitch. While it may be harder for some disabled people to play games due to the required motor skills, the streamers mentioned in the research all use their skills and disabilities to build their online identity. They streamed their gaming sessions to an audience and showed off their skill, a main theme amongst the eight was overcoming gaming challenges despite their disabilities. The streamers use the platform they have worked hard to build in much the same way that Rikki Poynter does. They educate their viewers on the challenges they face due to their disabilities daily, as well as put on an entertaining show at the same time. These streamers are known as huge inspirations to their community, overcoming their challenges is an inspirational sight for people from all walks of life (Anderson & Johnson, 2021). Similar to YouTube, Twitch does not have a great way to communicate with other members of the community. The primary method of communication on the website is the live chat feature, but similar to YouTube, most of the people in there will be talking about the live stream. Twitch creators also tend to resort to other platforms for communication amongst their community, using Discord to create chat rooms. While YouTube and Twitch create communities focused on the creators, Facebook users can create groups dedicated to any topic. The groups are more focused on the actual topic of the group rather than the creator of the community themselves.
Facebook groups allow people who have joined to post content to the group and comment on the posts of others. Facebook is a great example of a platform that hosts many support groups as mentioned earlier. It is easy to find and join the community with people who have similar disabilities to the user. A survey in 2014 conducted by Shpigelman and Gill (2014) shows that out of the 172 people with disabilities surveyed, forty eight percent of them were in Facebook support groups. There are countless articles and studies researching the multitude of different types of support groups on Facebook. One such article investigating the effect of the support groups on users with Autism has concluded that on top of the groups offering social, emotional, and informational support, the group also lets medical practitioners understand autism better from the user’s perspective. These groups can also be used by the parents of children affected by disabilities. Specific support groups can be created for parents to ask questions if they need help with their children’s disabilities and they can get answers and help whenever they need it (Zhao et al. 2019).
The communities that have arisen due to the rise in social media popularity are giving people all over the world a new way to find and become a part of communities. This has been essential for the creation and development of many different communities for disabled people everywhere. These communities have given them a place to find support, both emotional and informational. They have also given them a new place to find friends and people with similar interests or life experiences. Some people in these communities may not have even had these opportunities before these communities were made. This level of community engagement is a key part of growing up and can affect the health and wellbeing of young children if it is not present. There are also many disabled people creating communities to educate others about their disabilities, people who may have known nothing about them before. Overall, the online communities that are available to disabled people means that are significantly less disabled people who feel like they can not find a place to seek support and friendship.
References
Anderson, L. S., Johnson, R. M., (2021) Gamer identities of video game live streamers with disabilities, Information, Communication & Society. https://doi.org/10.1080/1369118X.2021.1907433
Carroll, P., Witten, K., Calder-Dawe, O., Smith, M., Kearns, R., Asiasiga, L., Lin, J., Kayes, N., & Mavoa, S. (2018). Enabling participation for disabled young people: study protocol. BMC Public Health, 18(1), 712. http://dx.doi.org/10.1186/s12889-018-5652-x
Perkins, V., Coulson, N. S., & Davies, E. B. (2020). Using Online Support Communities for Tourette Syndrome and Tic Disorders: Online Survey of Users’ Experiences. Journal of Medical Internet Research, 22(11)http://dx.doi.org/10.2196/18099
Pfeil, U., Zaphiris, P. (2010). Applying qualitative content analysis to study online support communities. Universal Access in the Information Society, 9(1), 1-16. http://dx.doi.org/10.1007/s10209-009-0154-3
Rikki Poynter. (n.d). Home [YouTube Channel]. YouTube. Retrieved February 24, 2022, from https://www.youtube.com/user/rikkipoynter/featured
Shpigelman, C., Gill, C. (2014). Facebook use by Persons with Disabilities Computer-Mediated Communication, 19(3), 610-624. https://onlinelibrary.wiley.com/doi/full/10.1111/jcc4.12059
Todd, A. (2018). Virtual (dis)orientations and the luminosity of disabled girlhood. Girlhood Studies, 11(3), 34. https://www.proquest.com/docview/2161029476?accountid=10382&forcedol=true&pq-origsite=primo
Zhao, Y., Zhang, J., Wu, M. (2019). Finding Users’ Voice on Social Media: An Investigation of Online Support Groups for Autism-Affected Users on Facebook. International Journal of Environmental Research and Public Health, 16(23) http://dx.doi.org/10.3390/ijerph16234804
Disability_and_Community_Conference_Paper
P.S: Sorry for the late post, I had not received my login details.
Thanks for your paper Samuel, it provides reinforcement for my own paper regarding the use of social media for creating community in the intellectually gifted population. Your paper’s focus on the diversity of social media platforms available and the ways in which they are being used and manipulated by users highlights the very positive effects they can have on those who have often had to live on the periphery. Whilst I didn’t cover the topic, there is a large contingent of individuals that identify as both gifted and disabled and one could assume, from the overlap in findings between our two papers, that despite being a very small cross-section of the population these people are benefitting equally from the increased connection, belonging and education of society that social media can provide.
Hello Yasmin,
Firstly, thanks so much for reading and commenting on my paper, and I am sorry it took me so long to get back to you.
After reading your paper I was honestly quite surprised to see how many similarities there are between disabled and gifted people when it comes to communities. I feel like with only a couple of changes here or there our papers could be talking about the same topic. The similarities in the way online communities are utilised by both disabled and gifted people shows how important these communities are for minority groups and the impact they can have on their lives. Support groups/communities seem to be quite common amongst the two for both the individual and their parents. I agree with your comments about those who are both gifted and disabled, and I believe that further reinforces the main ideas behind both our papers as I can only assume that those individuals would have an even harder time finding a community.
One major difference is that as you mentioned gifted people could hide their true selves to try and fit in (which is obviously a terrible choice to have to make), while a large portion of the disabled people are not able to do this. While it is obvious in hindsight it never occurred to me until your paper, and it is quite interesting to think about.
Thanks again for taking the time to comment on my paper!
Hi Samuel
Thanks for responding to my comment. I absolutely agree, our two papers really highlight how social media is benefitting minority groups despite the diversity of their members. As social media continues to develop and society adapts to the changes it brings, it will be interesting to see how this newfound ability to congregate and be heard will change acceptance of those who are perceived as different from the majority.
It is disheartening to think that any individual should feel the need to hide their true self in order to feel accepted, and you make a profound and extremely valid point that there are many people who are unable to do so, even if they wished to. Whilst I am loathe to burden fractional communities with the task of advocating for the many, it might be that those very individuals whose differences are distinctly observable are perfectly placed to campaign for their own acceptance, as well as educate those with unseen differences that it is time to stop hiding, step forward and be accepted as they are. There are currently some very visible individuals in mainstream and social media who, by simply being seen and living their honest and true realities in an open way, are already promoting this agenda – Dylan Alcott immediately comes to mind.
Yasmin
Hi Samuel,
What an excellent paper! This was a super interesting read, and I really liked how you discussed the russian-doll-like nature of communities, how within larger communities there are smaller ones. Reading your paper made me think about the phenomenon of disorder and disability ‘fakers’, which seems to be primarily on TikTok. There are YouTube channels dedicated to ‘exposing’ creators which the channel’s owner deems to be faking their illness. I would love to hear your thoughts on this issue. I’m in two minds about it because, of course you should never question the legitimacy of a person’s disability or illness, but at the same time, I think it’s unethical to grow a platform based on your claimed illnesses or disorders, effectively lying to your audience. I’ve included a few links of YouTube videos which have come up in my recommended about the topic.
https://youtu.be/FIw8cA9EpJs
https://youtu.be/tTwBjUapel0
Would love to hear your thoughts!
G x
Hello Grace,
Thanks so much for taking the time to read and comment on my paper.
I have heard of people faking illness and disabilities in the past on platforms such as Tik Tok and Twitch, but I never really thought of it in the context of my paper. You’re right in saying that it is unethical to grow a channel and community based on fake illness, but as you mentioned it is hard to claim they are faking without solid proof. Channels like the ones you linked receive a lot of viewers, and I am sure that a decent portion of those viewers go to the platforms of the people they expose and leave harsh comments. For faking such a serious illness, they might deserve it, but there is always the risk that the exposer will be wrong, and an innocent creator will be flooded with hate comments. In my opinion, these creators faking illnesses and disabilities should, with enough evidence, be removed from their platform so they cannot continue to spread lies and false information. However, I think that it should be the platform itself that is responsible for investigating and removing these creators. With their resources I can only assume it will be easier for them to find the truth, and this solution would hopefully avoid innocent creators being bombarded with hate comments.
These days it feels like people are willing to do anything to become an online influencer no matter how morally wrong it might be.
I am interested to hear what you think of my opinion!
Sam
Hey Sam,
Great paper! As a person living with a disability, I have certainly found an enormous sense of community online so it was interesting to read your perspective on this. Do you think these communities are impacting perceptions of disabilites offline so people feel less of a need to hide their authentic selves as you mentioned?
Cheers,
Robyn
Hello Robyn,
Thank you for responding to my post!
I haven’t thought about it too much, but I hope that people are being encouraged to show more of their true selves in public. People should not have to feel ashamed of who they are, and I believe that speaking with people who know what they themselves are going through will help. With the large amount of different support groups available I assume that there are also support groups out there dedicated to helping people be more comfortable with themselves offline.
I know for a fact that thanks to social media and disabled creators I know a lot more about disabilities than I used to. That might also be helping people with disabilities express themselves more offline, the thought that the general public is more educated than before. As I said though I do not know much about the topic, so my thoughts might just be wishful thinking.
Thanks again for responding, I would love to hear your thoughts on the matter.
Sam.
Hey Sam,
I agree that these groups help people be more comfortable with who they are and I think it’s great that social media is helping people to educate themselves on disability too. I do think we have a way to go though as I believe that a lot of the anxieties people have relating to their disabilites comes from the fact that there is still so many negative perceptions of disability present in our society. A lot of mainstream media focuses on the aspect of tragedy associated with disability so much of society still sees us as vicitms and people to be pitied, but I suppose that just makes social media even more powerful because we can tell our own stories of life with a disability.
Cheers,
Robyn
Hi Samuel, it was interesting reading your paper. Your article focuses on the various social media platforms available and how they are used positively by the gifted community. These platforms have given them a place to interact and voice out, giving them more confidence in being who they are. I liked your paper as one of my cousins is a disabled person, and online communities helped her in overcoming depression and accepting who she is. Thank you again for your article.
You can read my paper below:
https://networkconference.netstudies.org/2022/csm/374/social-media-helped-in-creating-terror-and-panic-during-the-covid-19-pandemic-in-mauritius/
Thank you.
Hey Nadarajan,
Thanks for reading and commenting on my paper.
Robyn actually commented asking if I felt that disabled people were beginning to show their true selves more after joining these communities. I had hoped that the communities would have this effect, and I am glad to hear that they were able to help your cousin in this way.
Thanks again for commenting on my post!
Sam