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Please Understand My Disability: An Analysis of YouTubers' Discourse on Disability Challenges

Published: 08 November 2024 Publication History

Abstract

Video-sharing platforms offer a unique avenue for people with disabilities (PWDs) to highlight their experiences, including the challenges and accessibility barriers they face. While creators with disabilities effectively use these platforms to share their life struggles and advocate for societal changes, the scope of research exploring the nature of the discourse activities related to disability challenges remains limited. Our study addresses this gap by conducting a comprehensive qualitative content analysis of 468 videos posted by YouTubers with a range of disabilities, including vision, speech, mobility, hearing, and cognitive and neural impairments. Our findings reveal a predominant discussion on stigma and lack of support. YouTube is also used to share difficulties related to communication and systemic problems. Creators with disabilities also share experiences with technologies and public and private environments, through which they discuss accessibility issues and solutions. Building on our analysis, we propose future research directions aimed at enhancing the experience and support for disability communities on video-sharing platforms.

References

[1]
Lisa Anthony, YooJin Kim, and Leah Findlater. 2013. Analyzing user-generated youtube videos to understand touchscreen use by people with motor impairments. In Proceedings of the SIGCHI conference on human factors in computing systems. 1223--1232.
[2]
Brooke E Auxier, Cody L Buntain, Paul Jaeger, Jennifer Golbeck, and Hernisa Kacorri. 2019. #HandsOffMyADA: A Twitter Response to the ADA Education and Reform Act. In Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems (CHI '19). Association for Computing Machinery, New York, NY, USA, 1--12. https://doi.org/10.1145/3290605.3300757
[3]
Juanita-Dawne Bacsu, Sarah Fraser, Alison L Chasteen, Allison Cammer, Karl S Grewal, Lauren E Bechard, Jennifer Bethell, Shoshana Green, Katherine S McGilton, Debra Morgan, Hannah M O'Rourke, Lisa Poole, Raymond J Spiteri, and Megan E O'Connell. 2022. Using Twitter to Examine Stigma Against People With Dementia During COVID-19: Infodemiology Study. JMIR Aging, Vol. 5, 1 (2022), e35677. https://doi.org/10.2196/35677
[4]
Ava Bartolome and Shuo Niu. 2023. A Literature Review of Video-Sharing Platform Research in HCI. In Proceedings of the 2023 CHI Conference on Human Factors in Computing Systems (CHI '23). Association for Computing Machinery, New York, NY, USA. https://doi.org/10.1145/3544548.3581107
[5]
Andrew A Bayor, Laurianne Sitbon, Bernd Ploderer, Filip Bircanin, Stewart Koplick, and Margot Brereton. 2019. Leveraging participation: Supporting skills development of young adults with intellectual disability using social media. In The 21st International ACM SIGACCESS Conference on Computers and Accessibility. 143--155.
[6]
Cynthia L Bennett, Cole Gleason, Morgan Klaus Scheuerman, Jeffrey P Bigham, Anhong Guo, and Alexandra To. 2021. 'It's Complicated': Negotiating Accessibility and (Mis)Representation in Image Descriptions of Race, Gender, and Disability. In Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems (CHI '21). Association for Computing Machinery, New York, NY, USA. https://doi.org/10.1145/3411764.3445498
[7]
Victoria Betton, Rohan Borschmann, Mary Docherty, Stephen Coleman, Mark Brown, and Claire Henderson. 2015. The role of social media in reducing stigma and discrimination. The British Journal of Psychiatry, Vol. 206, 6 (2015), 443--444. https://doi.org/
[8]
Katya Borgos-Rodriguez, Kathryn E Ringland, and Anne Marie Piper. 2019. MyAutsomeFamilyLife: Analyzing Parents of Children with Developmental Disabilities on YouTube. Proc. ACM Hum.-Comput. Interact., Vol. 3, CSCW (11 2019). https://doi.org/10.1145/3359196
[9]
Dawn O Braithwaite. 1991. 'Just how much did that wheelchair cost'?: Management of privacy boundaries by persons with disabilities. Western Journal of Speech Communication, Vol. 55, 3 (1991), 254--274. https://doi.org/10.1080/10570319109374384
[10]
Virginia Braun and Victoria Clarke. 2012. Thematic analysis., 57--71 pages. https://doi.org/10.1037/13620-004
[11]
Barbara E Bromley. 2008. Broadcasting Disability: An Exploration of the Educational Potential of a Video Sharing Web Site. Journal of Special Education Technology, Vol. 23, 4 (12 2008), 1--13. https://doi.org/10.1177/016264340802300401
[12]
Ani Cahyadi and Agus Setiawan. 2020. DISABILITY AND SOCIAL MEDIA: EXPLORING UTILIZATION OF INSTRAGRAM PLATFORM AS A TOOL FOR DISABILITY ADVOCACY. al-Balagh : Jurnal Dakwah dan Komunikasi, Vol. 5, 2 SE - Articles (12 2020), 223--250. https://doi.org/10.22515/al-balagh.v5i2.2746
[13]
CDC. 2019. Disability Impacts All of Us. (2019).
[14]
Dasom Choi, Uichin Lee, and Hwajung Hong. 2022. 'It's not wrong, but I'm quite disappointed': Toward an Inclusive Algorithmic Experience for Content Creators with Disabilities. In CHI Conference on Human Factors in Computing Systems. 1--19.
[15]
Coppélie Cocq and Karin Ljuslinder. 2020. Self-representations on social media. Reproducing and challenging discourses on disability. Alter, Vol. 14, 2 (2020), 71--84. https://doi.org/10.1016/j.alter.2020.02.001
[16]
Jared Duval, Ferran Altarriba Bertran, Siying Chen, Melissa Chu, Divya Subramonian, Austin Wang, Geoffrey Xiang, Sri Kurniawan, and Katherine Isbister. 2021. Chasing Play on TikTok from Populations with Disabilities to Inspire Playful and Inclusive Technology Design. In Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems (CHI '21). Association for Computing Machinery, New York, NY, USA. https://doi.org/10.1145/3411764.3445303
[17]
Katie Ellis and Mike Kent. 2016. Disability and social media: Global perspectives. Taylor textbackslash& Francis.
[18]
June B Furr, Alexis Carreiro, and John A McArthur. 2016. Strategic approaches to disability disclosure on social media. Disability & Society, Vol. 31, 10 (11 2016), 1353--1368. https://doi.org/10.1080/09687599.2016.1256272
[19]
Fabio Giglietto, Luca Rossi, and Davide Bennato. 2012. The Open Laboratory: Limits and Possibilities of Using Facebook, Twitter, and YouTube as a Research Data Source. Journal of Technology in Human Services, Vol. 30, 3--4 (7 2012), 145--159. https://doi.org/10.1080/15228835.2012.743797
[20]
Cole Gleason, Patrick Carrington, Lydia B Chilton, Benjamin Gorman, Hernisa Kacorri, Andrés Monroy-Hernández, Meredith Ringel Morris, Garreth Tigwell, and Shaomei Wu. 2020. Future research directions for accessible social media. ACM SIGACCESS Accessibility and Computing 127 (2020), 1--12.
[21]
Cole Gleason, Stephanie Valencia, Lynn Kirabo, Jason Wu, Anhong Guo, Elizabeth Jeanne Carter, Jeffrey Bigham, Cynthia Bennett, and Amy Pavel. 2020. Disability and the COVID-19 pandemic: Using Twitter to understand accessibility during rapid societal transition. In The 22nd International ACM SIGACCESS Conference on Computers and Accessibility. 1--14.
[22]
Anatoliy Gruzd and Ángel Hernández-García. 2018. Privacy Concerns and Self-Disclosure in Private and Public Uses of Social Media. Cyberpsychology, Behavior, and Social Networking, Vol. 21, 7 (7 2018), 418--428. https://doi.org/10.1089/cyber.2017.0709
[23]
Justin Anthony Haegele and Samuel Hodge. 2016. Disability Discourse: Overview and Critiques of the Medical and Social Models. Quest, Vol. 68, 2 (4 2016), 193--206. https://doi.org/10.1080/00336297.2016.1143849
[24]
Joy Hammel, Susan Magasi, Allen Heinemann, David B Gray, Susan Stark, Pamela Kisala, Noelle E Carlozzi, David Tulsky, Sofia F Garcia, and Elizabeth A Hahn. 2015. Environmental Barriers and Supports to Everyday Participation: A Qualitative Insider Perspective From People With Disabilities. Archives of Physical Medicine and Rehabilitation, Vol. 96, 4 (2015), 578--588. https://doi.org/10.1016/j.apmr.2014.12.008
[25]
Bronwyn Hemsley, Stuart Palmer, and Susan Balandin. 2014. Tweet reach: A research protocol for using Twitter to increase information exchange in people with communication disabilities. Developmental Neurorehabilitation, Vol. 17, 2 (4 2014), 84--89. https://doi.org/10.3109/17518423.2013.861529
[26]
Angulo-Jiménez Henry and DeThorne Laura. 2019. Narratives About Autism: An Analysis of YouTube Videos by Individuals Who Self-Identify as Autistic. American Journal of Speech-Language Pathology, Vol. 28, 2 (5 2019), 569--590. https://doi.org/10.1044/2018_AJSLP-18-0045
[27]
Richang Hong, Meng Wang, Xiao-Tong Yuan, Mengdi Xu, Jianguo Jiang, Shuicheng Yan, and Tat-Seng Chua. 2011. Video Accessibility Enhancement for Hearing-Impaired Users. ACM Trans. Multimedia Comput. Commun. Appl., Vol. 7S, 1 (11 2011). https://doi.org/10.1145/2037676.2037681
[28]
Donald Horton and R Richard Wohl. 1956. Mass Communication and Para-Social Interaction. Psychiatry, Vol. 19, 3 (8 1956), 215--229. https://doi.org/10.1080/00332747.1956.11023049
[29]
Jina Huh, Leslie S Liu, Tina Neogi, Kori Inkpen, and Wanda Pratt. 2014. Health Vlogs as Social Support for Chronic Illness Management. ACM Trans. Comput.-Hum. Interact., Vol. 21, 4 (8 2014). https://doi.org/10.1145/2630067
[30]
Mark R Johnson. 2019. Inclusion and exclusion in the digital economy: disability and mental health as a live streamer on Twitch.tv. Information, Communication & Society, Vol. 22, 4 (3 2019), 506--520. https://doi.org/10.1080/1369118X.2018.1476575
[31]
Joonyoung Jun, Woosuk Seo, Jihyeon Park, Subin Park, and Hyunggu Jung. 2021. Exploring the Experiences of Streamers with Visual Impairments. Proc. ACM Hum.-Comput. Interact., Vol. 5, CSCW2 (10 2021). https://doi.org/10.1145/3476038
[32]
Franklin Mingzhe Li, Jamie Dorst, Peter Cederberg, and Patrick Carrington. 2021. Non-Visual Cooking: Exploring Practices and Challenges of Meal Preparation by People with Visual Impairments. In Proceedings of the 23rd International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS '21). Association for Computing Machinery, New York, NY, USA. https://doi.org/10.1145/3441852.3471215
[33]
Franklin Mingzhe Li, Cheng Lu, Zhicong Lu, Patrick Carrington, and Khai N Truong. 2022. An Exploration of Captioning Practices and Challenges of Individual Content Creators on YouTube for People with Hearing Impairments. Proc. ACM Hum.-Comput. Interact., Vol. 6, CSCW1 (4 2022). https://doi.org/10.1145/3512922
[34]
Franklin Mingzhe Li, Franchesca Spektor, Meng Xia, Mina Huh, Peter Cederberg, Yuqi Gong, Kristen Shinohara, and Patrick Carrington. 2022. 'It Feels Like Taking a Gamble': Exploring Perceptions, Practices, and Challenges of Using Makeup and Cosmetics for People with Visual Impairments. In CHI Conference on Human Factors in Computing Systems (CHI '22). Association for Computing Machinery, New York, NY, USA. https://doi.org/10.1145/3491102.3517490
[35]
Alexander Libin, Manon Schladen, Inger Ljungberg, Brenda Tsai, Sydney Jacobs, Kendra Reinauer, Shannon Minnick, Miriam Spungen, and Suzanne Groah. 2011. YouTube as an on-line disability self-management tool in persons with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, Vol. 16, 3 (12 2011), 84--92. https://doi.org/10.1310/sci1603--84
[36]
Xingyu Liu, Patrick Carrington, Xiang 'Anthony' Chen, and Amy Pavel. 2021. What Makes Videos Accessible to Blind and Visually Impaired People?. In Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems (CHI '21). Association for Computing Machinery, New York, NY, USA. https://doi.org/10.1145/3411764.3445233
[37]
Sian Lloyd, Lisa A Osborne, and Phil Reed. 2019. Personal experiences disclosed by parents of children with autism spectrum disorder: A YouTube analysis. Research in autism spectrum disorders, Vol. 64 (2019), 13--22.
[38]
Kelly Mack, Danielle Bragg, Meredith Ringel Morris, Maarten W Bos, Isabelle Albi, and Andrés Monroy-Hernández. 2020. Social App Accessibility for Deaf Signers. Proc. ACM Hum.-Comput. Interact., Vol. 4, CSCW2 (10 2020). https://doi.org/10.1145/3415196
[39]
Kelly Mack, Emma McDonnell, Dhruv Jain, Lucy Lu Wang, Jon E. Froehlich, and Leah Findlater. 2021. What do we mean by 'accessibility research'? A literature survey of accessibility papers in CHI and ASSETS from 1994 to 2019. In Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems. 1--18.
[40]
David Meek. 2012. YouTube and Social Movements: A Phenomenological Analysis of Participation, Events and Cyberplace. Antipode, Vol. 44, 4 (9 2012), 1429--1448. https://doi.org/10.1111/j.1467--8330.2011.00942.x
[41]
Ryan A Miller. 2017. " My voice is definitely strongest in online communities": Students using social media for queer and disability identity-making. Journal of college student development, Vol. 58, 4 (2017), 509--525.
[42]
Terrance Mok, Anthony Tang, Adam Mccrimmon, and Lora Oehlberg. 2022. Social Access and Representation for Autistic Adult Livestreamers. In Proceedings of the 24th International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS '22). Association for Computing Machinery, New York, NY, USA. https://doi.org/10.1145/3517428.3550400
[43]
Katherine Nieweglowski and Lindsay Sheehan. 2017. Relationship depth and associative stigma of disability. Disability Studies Quarterly, Vol. 37, 3 (2017).
[44]
Shuo Niu, Jaime Garcia, Summayah Waseem, and Li Liu. 2022. Investigating How People with Disabilities Disclose Difficulties on YouTube. In The 24th International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS '22) (ASSETS '22). Association for Computing Machinery, New York, NY, USA. https://doi.org/10.1145/3517428.3550383
[45]
Shuo Niu, Katherine G McKim, and Kathleen P Reed. 2022. Education, Personal Experiences, and Advocacy: Examining Drug-Addiction Videos on YouTube. Proc. ACM Hum.-Comput. Interact., Vol. 5, CSCW2 (11 2022). https://doi.org/10.1145/3555624
[46]
Cristiane N Nobre, Magali R G Meireles, Débora B F Da Silva, Alberto H Faria, and Niltom Vieira Jr. 2018. Emotionally oriented analysis of the experiences of visually impaired people on facebook. ACM Transactions on Accessible Computing (TACCESS), Vol. 11, 3 (2018), 1--21.
[47]
Tyler S Oesterle, Bhanuprakash Kolla, Cameron J Risma, Scott A Breitinger, Daniela B Rakocevic, Larissa L Loukianova, Daniel K Hall-Flavin, Melanie T Gentry, Teresa A Rummans, Mohit Chauhan, and Mark S Gold. 2020. Substance Use Disorders and Telehealth in the COVID-19 Pandemic Era: A New Outlook. Mayo Clinic Proceedings, Vol. 95, 12 (2020), 2709--2718. https://doi.org/10.1016/j.mayocp.2020.10.011
[48]
Caroline Olvera, Glenn T Stebbins, Christopher G Goetz, and Katie Kompoliti. 2021. TikTok Tics: A Pandemic Within a Pandemic. Movement Disorders Clinical Practice, Vol. 8, 8 (11 2021), 1200--1205. https://doi.org/10.1002/mdc3.13316
[49]
Brandon Palonis. 2021. Understanding the Themes of Disability Discourse Through Reddit Comments. Ph.D. Dissertation. United States -- New York. https://login.libproxy.scu.edu/login?qurl=https%3A%2F%2Fwww.proquest.com%2Fdissertations-theses%2Funderstanding-themes-disability-discourse-through%2Fdocview%2F2610945238%2Fse-2%3Faccountid%3D13679 http://sculib.scu.edu:4550/resserv?genre=dissertations&is
[50]
Halley P Profita, Abigale Stangl, Laura Matuszewska, Sigrunn Sky, and Shaun K Kane. 2016. Nothing to Hide: Aesthetic Customization of Hearing Aids and Cochlear Implants in an Online Community. In Proceedings of the 18th International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS '16). Association for Computing Machinery, New York, NY, USA, 219--227. https://doi.org/10.1145/2982142.2982159
[51]
Rebecca Raby, Caroline Caron, Sophie Théwissen-LeBlanc, Jessica Prioletta, and Claudia Mitchell. 2018. Vlogging on YouTube: the online, political engagement of young Canadians advocating for social change. Journal of Youth Studies, Vol. 21, 4 (4 2018), 495--512. https://doi.org/10.1080/13676261.2017.1394995
[52]
Annalisa RAFFONE. 2022. 'Her leg didn't fully load in': A digitally-mediated social-semiotic critical discourse analysis of disability hate speech on TikTok. International Journal of Language Studies, Vol. 16, 4 (10 2022), 17--42. http://goddard40.clarku.edu/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=ufh&AN=159613205&site=ehost-live
[53]
Tobias Raun. 2018. Capitalizing intimacy: New subcultural forms of micro-celebrity strategies and affective labour on YouTube. Convergence, Vol. 24, 1 (1 2018), 99--113. https://doi.org/10.1177/1354856517736983
[54]
Marno Retief and Rantoa Letvsosa. 2018. Models of disability: A brief overview. HTS Teologiese Studies/Theological Studies, Vol. 74, 1 (2018).
[55]
Tânia Rocha, J Martins, F Branco, and R Gonccalves. 2017. Evaluating youtube platform usability by people with intellectual disabilities (a user experience case study performed in a six-month period). Journal of Information Systems Engineering & Management, Vol. 2, 1 (2017), 5.
[56]
Irina Sangeorzan, Panoraia Andriopoulou, and Maria Livanou. 2019. Exploring the experiences of people vlogging about severe mental illness on YouTube: An interpretative phenomenological analysis. Journal of Affective Disorders, Vol. 246 (2019), 422--428. https://doi.org/10.1016/j.jad.2018.12.119
[57]
Shruti Sannon, Jordyn Young, Erica Shusas, and Andrea Forte. 2023. Disability Activism on Social Media: Sociotechnical Challenges in the Pursuit of Visibility. In Proceedings of the 2023 CHI Conference on Human Factors in Computing Systems (CHI '23). Association for Computing Machinery, New York, NY, USA. https://doi.org/10.1145/3544548.3581333
[58]
Woosuk Seo and Hyunggu Jung. 2018. Understanding blind or visually impaired people on youtube through qualitative analysis of videos. In Proceedings of the 2018 ACM International Conference on Interactive Experiences for TV and Online Video. 191--196.
[59]
Woosuk Seo and Hyunggu Jung. 2021. Understanding the Community of Blind or Visually Impaired Vloggers on YouTube. Universal Access in the Information Society, Vol. 20, 1 (2021), 31--44. https://doi.org/10.1007/s10209-019-00706--6
[60]
Burr Settles. 2009. Active learning literature survey. (2009).
[61]
Kayla S Sweet, Jennifer K LeBlanc, Laura M Stough, and Noelle W Sweany. 2020. Community building and knowledge sharing by individuals with disabilities using social media. Journal of Computer Assisted Learning, Vol. 36, 1 (2 2020), 1--11. https://doi.org/10.1111/jcal.12377
[62]
Sarit Felicia Anais Szpiro, Shafeka Hashash, Yuhang Zhao, and Shiri Azenkot. 2016. How People with Low Vision Access Computing Devices: Understanding Challenges and Opportunities. In Proceedings of the 18th International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS '16). Association for Computing Machinery, New York, NY, USA, 171--180. https://doi.org/10.1145/2982142.2982168
[63]
Kristen Tollan. 2022. Exploring the Development of Disability Identity by Young Creators on Instagram. Review of Disability Studies: An International Journal, Vol. 17, 4 (2022).
[64]
Ashish Vaswani, Noam Shazeer, Niki Parmar, Jakob Uszkoreit, Llion Jones, Aidan N Gomez, 'ukasz Kaiser, and Illia Polosukhin. 2017. Attention is all you need. Advances in neural information processing systems, Vol. 30 (2017).
[65]
Johann Wentzel, Sasa Junuzovic, James Devine, John Porter, and Martez Mott. 2022. Understanding How People with Limited Mobility Use Multi-Modal Input. In CHI Conference on Human Factors in Computing Systems (CHI '22). Association for Computing Machinery, New York, NY, USA. https://doi.org/10.1145/3491102.3517458
[66]
Jaci Wilkinson. 2018. Accessible, dynamic web content using Instagram. Information Technology and Libraries, Vol. 37, 1 (2018), 19--26.
[67]
Katrina Wu. 2016. YouTube marketing: Legality of sponsorship and endorsements in advertising. JL Bus. & Ethics, Vol. 22 (2016), 59.
[68]
Shaomei Wu, Jeffrey Wieland, Omid Farivar, and Julie Schiller. 2017. Automatic alt-text: Computer-generated image descriptions for blind users on a social network service. In Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing. 1180--1192.
[69]
Jingyi Xie, Na Li, Sooyeon Lee, and John M Carroll. 2022. YouTube Videos as Data: Seeing Daily Challenges for People with Visual Impairments During COVID-19. In Proceedings of the 2022 ACM Conference on Information Technology for Social Good. 218--224.

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cover image Proceedings of the ACM on Human-Computer Interaction
Proceedings of the ACM on Human-Computer Interaction  Volume 8, Issue CSCW2
CSCW
November 2024
5177 pages
EISSN:2573-0142
DOI:10.1145/3703902
  • Editor:
  • Jeff Nichols
Issue’s Table of Contents
This work is licensed under a Creative Commons Attribution International 4.0 License.

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Published: 08 November 2024
Published in PACMHCI Volume 8, Issue CSCW2

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  1. barrier
  2. difficulty
  3. disability
  4. discourse
  5. video
  6. youtube

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