Sufro una grave enfermedad rara. Reto a cantar y hacer coreografías en TikTok

Abstract

Rare diseases are extremely severe, disabling pathologies. In total, 7% of the world’s population suffers from a rare disease. To publicize their plight, people suffering from such diseases and their families have turned to Facebook, Twitter, and YouTube, among other social media platforms, as effective tools for sharing their problems, calling for greater investment in research and to cope with their day-to-day hardships. Symbols and representations defining rare diseases that have been established in the media and on social networking services have thus gained in prominence. This research asks what the emergence of the TikTok app, the second most downloaded in 2019 and the first in 2020, has meant for how these diseases are made visible. To answer this question, 2,750 TikTok posts with the 11 most popular hashtags related to rare diseases in six languages ​​were analyzed between 1 January 2019 and 30 September 2020. The findings confirm that, against this highly personalized backdrop, the widespread use of TikTok is changing an already consolidated discourse of protest and fostering the creation of new codes with unpredictable results for the recognition and support needed by this marginalized community. Resumen Las enfermedades raras son patologías muy severas y discapacitantes que afectan al 7% de la población mundial. Para intentar visibilizar y denunciar su situación, las personas que padecen estas enfermedades y sus familias hallaron en Facebook, Twitter y YouTube, entre otras redes sociales, un canal eficaz para compartir sus problemas, exigir una mayor inversión en investigación y poder conllevar sus dificultades diarias. Desde entonces, se han estimado como válidos elementos simbólicos y de representación que se han ido forjando en los medios y en las redes sociales. Esta investigación se pregunta qué supone la irrupción de la aplicación TikTok, la segunda más descargada en 2019 y primera de 2020, en el modo en que son visibilizadas estas enfermedades. Para responder a la cuestión se han analizado 2.750 publicaciones en TikTok procedentes de los 11 hashtags más populares sobre enfermedades raras en 6 idiomas, entre el 1 de enero de 2019 y el 30 de septiembre de 2020. Se evidencia que, bajo el telón de la escenografía personalista, el uso masivo de TikTok está cambiando un discurso reivindicativo ya consolidado y está invitando a la creación de nuevos códigos con resultados impredecibles para el conocimiento y necesidades que este grupo poblacional en riesgo de exclusión demanda.

Spreadability and hate speech of radical conservatism: The Peruvian case on TikTok

“…Prior research has highlighted that although social networks were initially perceived as platforms for participatory democracy, they have turned into a cesspit of hate (Avdeeff 2021, Le Compte and Klug 2021, Sánchez-Castillo and Mercado-Sáez 2021, Schaffar 2021, Wheatstone and O'Connor 2020. The same platforms have implemented rules to prevent communication that discriminates based on factors such as race, creed, disability, age, or sexuality.…”

The political irruption of short video: Is TikTok a new window for Spanish parties?

“…Research on TikTok has so far mainly been limited to the aforementioned research on the functionalities, operation and most frequent topics, as well as the motivations of its users (Bucknell Bossen & Kottasz, 2020;Lu & Lu, 2019;Lu, Lu & Liu, 2020;Omar & Dequan, 2020;Wang, Gu & Wang, 2019), especially teenagers. More recently, the platform study has also addressed its use in raising awareness among young people of the need to take preventive measures against the COVID-19 pandemic (Basch, Hillyer & Jaime, 2020;Basch et al, 2021;Zhu et al, 2020); the trends that emerged and narratives employed during lockdown (Ballesteros Herencia, 2020; Olivares García & Méndez Majuelos, 2020); its adaptation to digital journalistic media (Sidorenko-Bautista, Herranz de la Casa & Cantero de Julián, 2020; Vázquez-Herrero, Negreira-Rey & López-García, 2020); different aspects related to medicine and health but not linked to the pandemic (Herrick, Hallward & Duncan, 2020;Sánchez-Castillo & Mercado-Sáez, 2021;Villa Ruiz et al, 2021;Zheng, Mulligan & Scott, 2021;; and its role as a transmitter of misinformation (Alonso-López, Sidorenko-Bautista & Giacomelli, 2021). However, despite the need for work on political communications on social networks to go beyond the analysis of Twitter (Casero-Ripollés, 2018), studies on the political use of TikTok are scarce, probably because the presence of political topics in the videos is still an exception (Shutsko, 2020) and the lack of interest that videos on current affairs garner in the community (Lu, Lu & Liu, 2020).…”

TikTok como plataforma educativa: Análisis de las percepciones de los usuarios sobre los contenidos científicos

“…Dance choreographies, challenges and humorous videos are still generally attracting large numbers of views (Suárez-Álvarez & García-Jiménez, 2021). But videos of a social, ecological, and cultural nature are also emerging in the ecosystem (Sánchez-Castillo & Mercado-Sáez, 2021). Science seems to have found a new means to showcase the scientific results of men and women who make up the community.…”