Twitter and disability activism: leadership and relevant topics in the online conversation

Terese Mendiguren Galdospin, Koldobika Meso Ayerdi, Jesús Ángel Pérez Dasilva, María Ganzabal Learreta, Ainara Larrondo Ureta, Simón Peña Fernández

Twitter and disability activism: leadership and relevant topics in the online conversation

ICONO 14, Revista de comunicación y tecnologías emergentes, vol. 21, no. 2, 2023

Asociación científica ICONO 14

Twitter y el activismo por la discapacidad: liderazgo y temas relevantes en la conversación en red

Twitter e ativismo por deficiência: liderança e questões relevantes na conversa online

Terese Mendiguren Galdospin *

University of the Basque Country (UPV/EHU), Spain

Koldobika Meso Ayerdi **

University of the Basque Country (UPV/EHU), Spain

Jesús Ángel Pérez Dasilva ***

University of the Basque Country (UPV/EHU), Spain

María Ganzabal Learreta ****

University of the Basque Country (UPV/EHU), Spain

Ainara Larrondo Ureta *****

University of the Basque Country (UPV/EHU), Spain

Simón Peña Fernández ******

University of the Basque Country (UPV/EHU), Spain

Received: 31 march 2023

Revised: 19 April 2023

Accepted: 17 june 2023

Published: 15 july 2023

Abstract: The dissemination and viralization of information on social media has been widely studied from various perspectives, including that of digital activism. On the other hand, disability-related activism has conquered the online environment, thus obtaining a reach that goes beyond the offline space and generating dialogue in the digital sphere. This article analyses the conversation generated on Twitter, taking as a sample all the tweets with the #disability hashtag before and after the International Day of Persons with Disabilities. More than 18,000 tweets, containing almost as many mentions, were analysed and interpreted as the weighted edges of a graph created using Gephi software and applying the Force Atlas 2 brute force algorithm. The focus was placed on the conversational communities generated around that hashtag, their main themes and the prominent participants in them. In conclusion, although the network of mentions is very dispersed, Twitter is the setting for assertions that receive certain institutional and political support in the Latin American environment, for organisations related to the cause (such as the ONCE Foundation) and, above all, the clear predominance of female activists.

Keywords: Disability; Twitter; digital activism; social movements; leadership; social media.

Resumen: La difusión y viralización de la información en los medios sociales ha sido ampliamente estudiada desde diversas perspectivas, incluida la del activismo digital. Por otro lado, el activismo relacionado con la discapacidad ha conquistado el terreno online obteniendo así un alcance que va más allá del espacio offline y generando diálogo en la esfera digital. Este artículo analiza la conversación generada en Twitter tomando como muestra todos los tuits con el hashtag #discapacidad anteriores y posteriores al Día Internacional de las Personas con Discapacidad. Se han analizado más de 18.000 tuits en los que hay casi otras tantas menciones, que han sido interpretadas como las aristas ponderadas de un grafo dirigido con el software Gephi, aplicando el algoritmo de fuerza bruta Force Atlas 2. Se ha puesto el foco en las comunidades conversacionales generadas en torno a ese hashtag, las temáticas principales y los actores destacados en dichas comunidades conversacionales. Se concluye que, aunque la red de menciones es muy dispersa, Twitter es escenario de reivindicaciones que abarcan cierto apoyo institucional y político del entorno latinoamericano, de entidades relacionadas con la causa como La Fundación ONCE y, sobre todo, la predominancia clara de activistas mujeres.

Palabras clave: Discapacidad; Twitter; activismo digital; movimientos sociales; liderazgo; redes sociales.

Resumo: A disseminação e viralização de informações nas redes sociais tem sido amplamente estudada sob diversas perspectivas, inclusive a do ativismo digital. Por outro lado, o ativismo relacionado à deficiência conquistou o terreno online, obtendo assim um alcance que vai além do espaço offline e gerando diálogo na esfera digital. Este artigo analisa a conversa gerada no Twitter tomando como amostra todos os tweets com a hashtag #deficiência antes e depois do Dia Internacional da Pessoa com Deficiência. Foram analisados mais de 18.000 tweets com quase o mesmo número de menções, que foram interpretados como arestas ponderadas de um gráfico direcionado com o software Gephi, aplicando o algoritmo de força bruta Force Atlas 2. O foco foi colocado nas comunidades de conversação geradas em torno dessa hashtag, os principais temas e os atores de destaque nas referidas comunidades de conversação. Verifica-se que, embora a rede de menções seja muito dispersa, o Twitter é palco de reivindicações que incluem certo apoio institucional e político do ambiente latino-americano, de entidades ligadas à causa como a Fundación ONCE e, sobretudo, o claro predominância de mulheres ativistas.

Palavras-chave: Deficiência; Twitter; ativismo digital; movimentos sociais; liderança; conversa.

1. Introduction

In Spain, there are over 4.3 million people with some type of disability, according to the Survey on Disability, Personal Autonomy and Dependency Situations produced by the Spanish Statistics Institute (INE, 2022). This collective often faces physical or cognitive barriers that hinder their communication with others and their ability to live full lives in society. These communication barriers are especially suffered by those with hearing, speaking, reading, writing or comprehension problems.

Disabled people are very aware that their disabilities are perceived as a stigma and are detrimental in social environments (Goffman, 1963). Moreover, a negative image has even been constantly transmitted in the media throughout their lives (Oliver, 2004).

In this context, the emergence of social media has not only opened up extensive opportunities for disabled people (Rugoho, 2020), but has also allowed them to control how and when to disclose information about their disability (Furr et al., 2016). It offers new opportunities to forge relationships and achieve social support (Suriá, 2017), which contributes to increased integration of those who suffer the greatest isolation outside the online environment (Banjanin et al., 2015). Social media provides disabled people with new tools for presence, communication and empowerment (Gelfgren et al., 2022). Narratives based on empowerment, humour or responsibility, amongst other factors, are precisely what allow disabled influencers to present themselves on social media not as victims or superhuman figures, but as complex human beings (Södergren y Vallström, 2022).

2. Online Disability Activism

Social media, especially YouTube, Instagram and TikTok, have become the ideal location for activism for disabled people (Lapierre, 2023), as these platforms allow for self-representation of disability by content creators themselves (Bonilla del Río et al., 2022b). A fundamental form of activism on social media is storytelling. Marginalised groups are offered alternative means for telling stories, which can complement, complicate and criticise the dominant media narrative (Liao, 2019). In the specific case of disabled activists, storytelling allows them to make their voices heard (Bitman, 2023).

As covered by Bassey et al. (2021), social media boosts this collective’s social contact and promotes defence and awareness of disability, in addition to communication, exchange and activism (Ellis and Kent, 2016). In fact, multiple authors present digital activism as an opportunity for digital inclusion of disabled people (Ellis & Goggin, 2018; Bonilla del Río et al., 2021).

They highlight research centred around digital activism aimed at protecting the rights of individuals with functional diversity (Auxier et al., 2019), improving accessibility in ITC use (Tjokrodinata et al., 2022), challenging government policy and negative stereotypes (Pearson & Trevisan, 2015) and promoting political and citizen participation (Mann, 2018; Trevisan, 2020), amongst other topics. Moreover, ‘there is a notable change in the social discourse defending diversity in beauty and fashion’ (Mañas et al., 2022, p. 206).

In January 2017, the Disability March was created: a social media campaign that allowed activists to protest in an accessible way whilst also presenting and constructing their identities (Li et al., 2018). This initiative showed how, for the first time, disability challenged the relationship between offline and online activism (Dube, 2020). It gradually became clear that revealing a previously-hidden disability contributed to individuals’ identities being legitimate and authentic (Evans, 2019).

Multiple studies have shown that social media plays a crucial role in promoting the visibility and acceptance of disability, which contributes to recognition of diversity and social inclusion (Foster and Pettinicchio, 2021). These platforms make disabled people feel less alone (Caron and Light, 2016) and lead them to develop and maintain other meaningful relationships, increase the frequency and quality of their social interactions and reduce their feelings of loneliness (Chadwick et al., 2013). Moreover, using social media can contribute to disabled people gaining positive experiences in terms of friendship and entertainment (Bonilla del Río and Sánchez Calero, 2022), development of social identity and self-esteem, and enjoyment (Caton y Chapman, 2016).

3. The Most-Used Social Media Platforms

Social media such as Instagram allows disabled content creators to show their interests, participate in the digital environment and interact with their audience, which helps to reduce barriers and stereotypes and benefits empowerment of this collective (Bonilla del Río et al., 2022b). In fact, some studies conclude that the discourse of Spanish disability-related associations, foundations and public and private organisations on the main social media platforms results in greater knowledge and a positive view of disabled people amongst society as a whole, raising awareness of the stereotypes, prejudices and hate speech that still exist (López Cepeda et al., 2021).

Despite the potential benefits of using social media, the ‘digital divide’ concept could be applied to individuals who live with a disability (Jaeger, 2012; Werner and Shpigelman, 2019). It is clear that these individuals are less likely than others to have access to computers or the Internet and, therefore, to social media (Hoppestad, 2007). Nevertheless, through accessibility and inclusive design (Pullin, 2011), amongst other matters, the disability ‘digital divide’ has been successfully bridged in part, as there is still certain digital exclusion that affects individuals depending on their type and degree of disability, their digital skills and their socio-economic circumstances (Dobransky and Hargittai, 2016).

Although social media was designed without disability in mind, it is increasingly used by disabled people, who are more concerned about and interested in using it (Criado et al., 2018). That being said, there are still very few studies on this subject (Enajeh et al., 2018).

The most popular social media platform for disabled people (Asuncion et al., 2012; Raghavendra et al., 2012) and, particularly and specifically, for those with visual impairment (Brinkley y Tabrizi, 2013; Vashistha et al., 2015) is Facebook. This network has been used for free expression, connection with other people and sharing information (Stamou et al., 2016; Smieszek and Borowska-Beszta, 2017; Pritchard, 2021; Aikaterini and Papadopoulos, 2022). Like with other social media, some research has pointed to the empowering effect of Facebook, which is also used as a network that contributes to creating groups and normalising disability (Shpigelman, 2017).

Some other studies were based on analysing use of Instagram by disabled people. This network has also become a platform that provides opportunities for disabled people to defend their and their groups’ existence with regard to equality in society (Cahyadi and Setiawan, 2020). Certain studies focus on the visual content posted on Instagram to promote disabled people's abilities and mitigate stereotypes (Mitchell et al., 2021). Other, more general studies analyse, amongst other aspects, self-representation of disability (Cocq and Ljuslinder, 2020; Bonilla del Río et al., 2022b), which contributes to a progressive increase in understanding and acceptance.

The growth undergone by TikTok and the corresponding interest generated in the general public is large and increasingly evident (Schellewald, 2021). However, there are not many studies relating to its use by disabled people and the few existing studies are based on the effectiveness of short videos as a therapy plan (Mohammed, 2022). However, there is also research that aims to raise awareness of the abuse and hurt to which disabled people are sometimes subjected on TikTok (Bonilla del Río, et al. 2022a).

Now, if there is a social media platform that truly contributes to raising awareness and giving a voice to the community with any type of disability, that platform is Twitter (Sarkar et al., 2021). Campaigns raising awareness of disability have caused huge impact on this platform (Gómez Marí et al., 2022). Some studies have focussed on analysing a specific diagnosis (Quadri et al., 2018; Zhang and Ahmed, 2019; Pavlova and Berkers, 2020), whilst others have directed their aims towards studying the content, emotional networks and feelings shared on Twitter relating to disability (Beykikhoshk et al., 2015; Al Zayer and Gunes, 2018; Deriss, 2019; Pal, 2019; Bellon-Harn et al., 2020) or towards debates around disability promoted in the microblogging network (Ineland et al., 2019). Some also expose the daily discrimination and microaggressions faced by disabled people on Twitter (Moral et al., 2022).

4. Aims, Hypothesis and Methodology

This study, contextualised on 3rd December 2022, the International Day of Disabled Persons, and in the social network Twitter, precisely aims to analyse the conversation generated on this platform around messages posted with the #disability hashtag on the days prior to and after this specific date. The aim is to describe the predominant participants or organisations and the most prominent topics in the aforementioned conversations. On a day intended to give visibility to individuals with functional diversity and to defend their rights to social inclusion, our starting point is the hypothesis that Twitter would clearly be a setting for institutional messages from organisations related to the cause and for Spanish political leaders supporting inclusiveness. As a second hypothesis, there would be a clear conversational nucleus led by disability activists. The third and last hypothesis is linked to the subject matter, as we can assume there to be assertions around public funding and accessibility, both technological and related to infrastructure.

With the aim of carrying out the study, we examined the configuration of online connections formed around the International Day of Disabled Persons on Twitter, using the social media analysis method (Borgatti et al., 2009; Freeman, 2004). This platform in particular was chosen for its open nature (Williams et al.,2013), which facilitates unlimited observation of information exchanges between users (Wu et al., 2011). ‘Twitter offers an interesting environment for research because it generates a huge number of interpersonal interactions that provide a significant set of data’ (Pérez-Dasilva et al., 2020, p. 5), allowing the academic research sector to study the information-sharing processes on social media (Brubaker and Wilson, 2018; Benson, 2016). Each and every tweet with the #disability hashtag on Twitter between 27th November and 11th December 2022 were captured; in other words, over the week prior to and the week after the International Day of Disabled Persons.

In total, 18,889 tweets were recorded, containing 17,656 inter-user mentions. These mentions were interpreted as the weighted edges of a graph created with Gephi software, which allowed us to produce the visualisation presented in the results section. Furthermore, users were grouped in hierarchical conglomerates (cluster analysis) (Kaleel and Abhari, 2015) and the network was designed using the Force Atlas 2 brute force algorithm, which places connected nodes close to one another and distances them from unrelated nodes. Using the Louvain algorithm to identify communities, 748 were found, 18 of which were above the 1% node threshold. The partition quality (Modularity) is 0.882. This analysis focusses on the 18 main detected communities (above the 1% node threshold), their topics and the leaders of these conversational nuclei.

5. Results

The mentions network obtained over the dates prior to and after the International Day of Persons with Disabilities is enormously dispersed, as can be anticipated and visually evaluated after implementing Force Atlas 2. In fact, the network's main metrics coincide with and reinforce this interpretation of the network’s dispersion: Each network node is connected to an average of 1.652 nodes, the average distance between network nodes is 5.695 steps and the maximum distance between the two connected nodes furthest from the network is 19 steps.

Graph representing the 18 conversational communities
Image 1
Graph representing the 18 conversational communities

Source: Prepared by the authors

As can be verified in the methodology, 748 communities were found using the Louvain algorithm. Less than 12% of the network’s edges arise between nodes of different communities; therefore, 18 are above the 1% node threshold (Image 1). In other words, in the conversation on the social network Twitter around disability, and over the dates specified in the methodology, 18 conversational communities can be highlighted. 1,618 users participated in the most prominent community (258, in Image 1). The user @Pontifex_es, corresponding to the official account of Pope Francis, received 1,635 mentions, making it the community leader (Image 2). Aside from being the leader of this nucleus, his message is the most re-tweeted in 9 of the 18 analysed communities.

The most prominent community, led by Pope Francis
Image 2
The most prominent community, led by Pope Francis

Source: Prepared by the authors

His tweet, a tribute to disabled people, is the most re-tweeted: ‘Today we would like to think of everyone with a #disability, especially those living in a state of war (...)’ (Image 3). This community covers the general dialogue that arose surrounding International Disability Day between the Pope and the different accounts of Catholic groups or environments, such as @vaticannews_es, a service offered by the Dicastery for Communication of the Holy See, or @Catholic_Net, which defines itself as an online meeting point for Catholics.

The most prominent tweet in the most significant community
Image 3
The most prominent tweet in the most significant community

Source: Twitter

1,156 users participated (Image 4) in the second most prominent community (187, Image 1). This is led by the Spanish disability activist Eva Nasarre (@e_nasarre), who was once an icon of aerobics and healthy living in the 80s through her television programme “Puesta a punto”. Nasarre is now 63 and suffers from a serious degenerative disease that has confined her to a wheelchair. Since she was diagnosed with the disease over twenty years ago, she has spoken out about the injustices experienced by disabled people.

The second most prominent community, led by the Spanish activist Eva Nasarre
Image 4
The second most prominent community, led by the Spanish activist Eva Nasarre

Source: Prepared by the authors

Nasarre received 1,827 mentions. Her message - the most re-tweeted after the Pope’s - condemns a lack of empathy and sensitivity towards disabled people (Image 5). It is also a prominent message in an additional 5 communities. For many years, she has been an activist for real inclusion of individuals with functional diversity and a staunch defender of the collective's rights. Proof of this are her regular assertions and the profile image she has chosen for her Twitter account: the symbol of disabled people.

 The most re-tweeted tweet by Eva Nasarre
Image 5
The most re-tweeted tweet by Eva Nasarre

Source: Twitter

The ONCE Foundation (@Fundacion_ONCE) leads the conversation in the third most significant community (78), with 1,129 users. This organisation’s account received 245 mentions. However, it is very closely followed by @Plenainclusion (associations defending the rights of people with intellectual or developmental disability and their families), with 217 mentions, and @Cermi_Estatal (Spanish Committee of Representatives of Disabled People), with 200 mentions. In this community, the accounts and users belong to the disability sector and address the topic of violations of disabled people's rights. They are not the only disability-related organisations that lead conversational nuclei. The account @la_discapacidad (Movement for Disability) received 267 mentions and was the leader of another community (138, in Image 1), where the Royal Disability Board (@RPDiscapacidad), with 187 mentions, is also prominent. This is a community with accounts that are closely related to institutions. In the same vein, the account @NoInvisibles (“rare, but not invisible”) received 92 mentions, thus leading a conversational nucleus (2, in Image 1) comprising 397 users. This is a community with activists and accounts that are closely related to a specific type of disability or disease, health, law and disabled people's integration into employment. The second most mentioned account in this community is that of Natalia Velilla (@natalia_velilla), a family and disability magistrate. Her tweet, which adds a critical comment, can also be highlighted: “On #DisabilityDay, I’m re-releasing my article on #disability. There’s not much more I can say about this topic, which is perhaps one of the most adulterated by supposed do-gooders and which is most suffered in solitude, without true empathy and help from society”.

There are Latin American conversational nuclei, such as that led by Carolina Marzán, a Chilean MP and Chair of the Committee of Older People, Disability and Social Development (@carolamarzan). In this community (599), the most mentioned users are Chilean. The most re-tweeted message, after the Pope’s tweet, is precisely that posted by the MP herself regarding her dismissal as Chair of the aforementioned Committee (Image 6).

Tweet by the Chilean MP Carolina Marzán
Image 6
Tweet by the Chilean MP Carolina Marzán

Source: Twitter

The Mexican account @IFT_MX (the official account of the Federal Institute of Telecommunications, the body responsible for regulating, promoting and supervising broadcasting and telecommunications in Mexico) leads a conversation (Community 87) that focusses on employment openings for disabled people and their assertions. The Argentine journalist Lana Montalbán (@LanaMontalban) leads another community (Community 0), where a message by her was the most re-tweeted (Image 7). In this tweet, she criticises a fan who, during the football World Cup, uses a space designated for disabled people although he does not need it.

Tweet by the Argentine journalist Lana Montalbán
Image 7
Tweet by the Argentine journalist Lana Montalbán

Source: Twitter

Causing less impact - in other words, leading smaller communities - we can highlight the accounts @Supersalud (the official account of the National Health Superintendence, Colombia) and @Disability_SE (María Soledad Cisternas Reyes, SG-NU Special Envoy for Disability and Accessibility, Advocate of Human Rights, Chile). These accounts lead a community (207) with a large presence of Colombian institutional accounts. The Mexican politician Alejandra del Moral (@AlejandraDMV) is the leader of a community (510) with a large presence of Mexican institutional and political accounts. The most re-tweeted message is by Del Moral herself, supporting the integration of disabled people. The conversation revolves specifically around the measures taken by certain Mexican politicians to promote inclusion of disabled people. Another community with a large presence of Latin American users and accounts is that led by the account @UNESCO_es (UNESCO in Spanish), which received 156 mentions (Community 318). This is a nucleus including institutional accounts and those of associations related to disabled people. The most re-tweeted tweet was the Pope’s message, as mentioned above. It is very closely followed by, and in the same institutional vein as, that of UNESCO in Spanish (Image 8). The conversation addresses the International Day of Persons with Disabilities and awareness-raising.

Tweet marking 3rd December 2022 by UNESCO in Spanish
Image 8
Tweet marking 3rd December 2022 by UNESCO in Spanish

Source: Twitter

The account of the Mexican Government’s Secretary of State for Welfare (@bienestarmx) is the leader of a somewhat smaller community (484), which brought together 209 users. Amongst them, there is a large presence of Mexican institutional and political accounts, in addition to a number of associations that work with disabled people. In general, the conversation focusses on different actions designed to share the needs and challenges faced by the different administrations. Although lower in impact, we can find another community (352) in the Latin American environment led by @andiscapacidad (Argentine National Disability Agency) and by the President of Argentina, Alberto Fernández (@alferdez). This nucleus has a large presence of Argentine institutional and political accounts, in addition to a number of associations that work to include disabled people in employment. The two most shared tweets are, on the one hand, that of the Deputy Health Minister of the Government of Buenos Aires Province, Alexia Navarro (@alexiannavarro), announcing an official visit to the events and activities for the International Day of Persons with Disabilities and, on the other, that of the software engineer David Flores (@dfloresdev, an individual committed to web accessibility, a11y, for disabled people) regarding an event organised for 3rd December. The general conversation revolves around events, talks and multiple activities taking place in Argentina on 3rd December.

Also prominent are the communities led by activists focussed on gender perspective, adaptive education and inclusion of the collective of disabled children. For example, Ana Mourelo, who promotes a campaign calling for adapted playgrounds (#1rParcInclusiuBcn) and chairs an association that researches MECP2 duplication syndrome (@AsocMecp2), leads a community (89) of users and accounts related to teaching from a social inclusion perspective. Although the most re-tweeted message in this community is that of Eva Nasarre, Mourelo’s awareness-raising message stands out: “Did you know that developing a #disability is like playing the lottery? You think it will never happen to you but the day comes when it does. You don't choose disability, it happens to you. It’s up to all of us to make it more visible and to improve disabled people’s rights”.

The account @acciumred_media (AcciumRed, teachers of easy reading and digital accessibility) leads a community (6) with fewer users. This community is mainly formed of users who are activists with some type of disability, particularly autism. Especially prominent is the message stating: “For anyone with questions about the #murder of a woman with #MultipleSclerosis. 20% of women murdered in #GenderViolence had a #disability. 23% of disabled women have been victims of GV. ☞ 34% of all disabled women are dependent” (Image 9).

Tweet with a gender perspective
Image 9
Tweet with a gender perspective

Source: Twitter

The general conversation centres around this message and those of other activists and influencers defending the rights of disabled people and awareness-raising of their needs, some of which focus on disabled women or on women caring for disabled children. In other communities, which are smaller but still in the ranking of the 18 most significant, two accounts can be highlighted. On the one hand, the user @paulina 073, who is a mother, carer and activist for the rights and inclusion of disabled people, leads a nucleus of activists who are predominantly deaf, deaf-blind and autistic (Community 224); on the other, we find the account @amanixer (Aragonese association of disabled women), which is mainly followed by institutions in Zaragoza and Aragonese associations. The general conversation covers different plans for the inclusion of disabled people and news items related to the topic, particularly emphasising disabled women as victims of different types of discrimination.

Amongst the 18 communities under analysis, that led by Noah Higón Bellver (@nh487) takes ninth place in terms of impact (354, in Image 1). This 24-year-old Valencian activist has been diagnosed with seven rare diseases, leading her to turn to social media to draw attention to her cause. The community that she leads brings together accounts on rare diseases that aim to inform, raise awareness and defend.

Tweet by the Valencian activist Noah Higón
Image 10
Tweet by the Valencian activist Noah Higón

Source: Twitter

In this community, the conversation revolves around the International Day of Persons with Disabilities, and especially prominent are re-tweets of messages by the above-mentioned activists, such as Eva Nasarre, Natalia Velilla and Ana Mourelo.

6. Discussion and Conclusions

Our starting point is the idea confirmed by numerous studies on the contribution to activism of the Twitter platform in terms of awareness-raising of and sensitisation to social inclusion issues (Sarkar et al., 2021). Multiple studies have shown that, in this sense, Twitter and other social media play an important role in making disability visible (Foster and Pettinicchio, 2021). However, it remains to be seen if we are close to bridging the ‘digital divide’ experienced by this collective, as it has fewer opportunities than other individuals to access social platforms (Dobransky and Hargittai, 2016). Another possible subject of discussion is the use made of these networks to achieve real impact of inclusive messages. These platforms may represent an important first step, but awareness-raising and dissemination of integrationist content should not be limited to a single day (Gómez Marí et al., 2022).

After breaking down the conversation generated on this social media platform around the #disability hashtag, and in the context of the International Day of Persons with Disabilities, we can conclude that a general online dialogue was not constructed. Instead, shows of support by Twitter users were made to a few opinion leaders, through re-tweets of their posts. The most prominent community was led by the globally important and popular figure Pope Francis. We can say that this is the only community led by a user not directly related to disability issues and the fight for this collective’s rights, beyond his social commitment as a representative who is globally committed to tackling social injustice. In parallel, Spanish institutions and political figures are barely present, in contrast with Latin American networks, where institutional messages are endorsed (h1). In this sense, we can highlight the community led by Carolina Marzán, a Chilean MP and Chair of the Committee of Older People, Disability and Social Development, although her impact is mainly due to her resignation, rather than to awareness-raising of disability. More institutional, and linked to political support, we can see the community constructed around the Argentine president Alberto Fernández, that includes a large presence of institutional accounts, in addition to a number of associations that work to include disabled people in employment. Therefore, there is an absence of prominent Spanish political leaders beyond the indirect presence of Aragonese regional institutions (h1). Nevertheless, and outside any political context, most of the analysed communities are linked to Spanish accounts. This is the case of the community led by the ONCE Foundation, which is mainly formed of users belonging to the disability sector.

We can note a clear predominance of female activists, and Eva Nasarre is the most popular. They are mostly directly-affected individuals or the mothers of disabled children who take on an active role in the fight for awareness-raising, sensitisation and condemnation of violations of disabled people’s rights (h2). They sometimes apply a gender focus to these topics, thus speaking out about the double condition of being female and belonging to the disabled collective.

With regard to subject matter (h3), most of the communities revolve around support for general inclusion, but we can highlight criticism linked to a lack of measures and social awareness. There are also references to the ‘digital divide’.

All in all, we can say that, in both the institutional and social environments, women are leading the movements and associations that fight to achieve the goals of inclusion and visibility for the disabled collective.

Authors’ contribution

Terese Mendiguren Galdospin: Conceptualization, methodology, formal analysis, investigation, writing original draft and visualization. Koldobika Meso Ayerdi: Conceptualization, methodology, validation, writing original draft, writing-review and editing, supervision and visualization. Jesús-ÁngelPérez Dasilva: Resources, writing-review and editing. María Ganzabal Learreta: writing-review and editing, supervision and visualization. Ainara Larrondo Ureta: writing-review and editing, supervision and visualization. Simón Peña Fernández: writing-review and editing, supervision and visualization. All the authors have read and accepted the published version of the manuscript. Conflicts of interest: The authors declare that they have no conflict of interests.


This research was carried out in the framework of the UPV/EHU Project “University, Disability and Inclusion” (US21/23) in partnership with the ONCE Foundation and with the GUREIKER Type A Research Group of the Basque University System (IT1496-22).


Aikaterini, Gkatzola y Papadopoulos, Konstantinos (2022). Facebook usage and quality of life of individuals with visual impairments. British Journal of Visual Impairment, 0(0).

Al Zayer, Mayed y Gunes, Mehmet Hadi (2018). Exploring visual impairment awareness campaigns on Twitter. Social Network Analysis and Mining, 8(1), 1-16.

Asuncion, Jennison; Budd, Jillian; Fichten, Catherine S.; Nguyen, Mai; Barile, Maria y Amsel Rhonda (2012). Social media use by students with disabilities. Academic Exchange Quarterly, 16(1), 30–35.

Auxier, Brooke; Buntain, Cody L.; Jaeger, Paul; Golbeck, Jennifer y Kacorri, Hernisa (2019). # HandsOffMyADA: A Twitter Response to the ADA Education and Reform Act. En Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems.

Banjanin, Nikolina; Banjanin, Nikola; Dimitrijevic, Ivan y Pantic, Igor (2015). Relationship between internet use and depression: Focus on physiological mood oscillations, social networking and online addictive behavior. Computers in Human Behavior, 43, 308-312.

Bassey, Anthony; Meribe, Nnaemeka; Bassey, Emmanuel y Ellison, Caroline (2021). Perceptions and experience of social media use among adults with physical disability in Nigeria: attention to social interaction. Disability & society.

Bellon-Harn, Monica L.; Ni, Jianyuan y Manchaiah, Vinaya (2020). Twitter usage about autism spectrum disorder. Autism, 24(7), 1805-1816.

Benson, Phil (2016). The discourse of YouTube: Multimodal text in a global context. Routledge.

Beykikhoshk, Adham; Arandjelović, Ognjen; Phung, Dinh; Venkatesh, Svetha y Caelli, Terry (2015). Using Twitter to learn about the autism community. Social Network Analysis and Mining, 5(22), 1-17.

Bitman, Nomy (2023). ‘Which part of my group do I represent?’: disability activism and social media users with concealable communicative disabilities. Information, Communication & Society, 26(3), 619-636,

Bonilla del Río, Mónica, Di Cintio, Antonella y Pérez Rodríguez, Amor (2022a). Percepción del humor, challenges y discapacidad en TikTok. En Aguaded Gómez, José Ignacio; Vizcaíno Verdú, Arantxa; Hernando Gómez, Ángel y Bonilla del Río, Mónica (Coords). Redes sociales y ciudadanía: ciberculturas para el aprendizaje (pp. 325-331). Grupo Comunicar Ediciones.

Bonilla del Río, Mónica; Figuereo Benítez, Juan C. y García Prieto, Victoria (2022b). Influencers with physical disabilities on Instagram: Features, visibility and business collaboration. Profesional de la información, 31(6), e310612.

Bonilla del Río, Mónica; García Ruiz, Rosa; Aguaded, Ignacio y Muñoz Borja, Patricia (2021). Introducción. Activismo digital y diversidad social. Focos de interés para la educación mediática. En Tornay-Márque, Mª Cruz; Sánchez-López, Iván y Jaramillo-Dent, Daniela (Coords.). Inclusión y activismo digital: participación ciudadana y empoderamiento desde la diversidad (pp. 9-28). Dykinson S.L.

Bonilla del Río, Mónica y Sánchez Calero, Mª Luisa (2022). Inclusión educativa en tiempos de COVID-19: Uso de redes sociales en personas con discapacidad intelectual. RIED-Revista iberoamericana de educación a distancia, 25(1), 141-161.

Borgatti, Stephen P.; Mehra, Ajay; Brass, Daniel J. y Labianca, Giuseppe (2009). Network analysis in the social sciences. Science, 323(5916), 892-895.

Brinkley Julian y Tabrizi Nasseh (2013). A pilot study examining the online behavior of web users with visual impairments. International Journal of Advanced Computer Science and Applications, 4(11), 150–155.

Brubaker, Pamela-Jo y Wilson, Christopher (2018). Let’s give them something to talk about: Global brands’ use of visual content to drive engagement and build relationships. Public relations review, 44(3), 342-352.

Cahyadi, Ani y Setiawan, Agus (2020). Disability and social media: exploring utilization of Instragram platform as a tool for disability advocacy. Al-Balagh : Jurnal Dakwah Dan Komunikasi, 5(2), pp. 223-250.

Caron, Jessica y Light, Janice (2016). Social Media has Opened a World of ‘Open communication: Experiences of Adults with Cerebral Palsy Who Use Augmentative and Alternative Communication and Social Media. Augmentative and Alternative Communication, 32(1), 25-40.

Caton, Sue y Chapman, Melanie (2016). The use of social media and people with intellectual disability: A systematic review and thematic analysis. Journal of Intellectual & Developmental Disability, 41(2), 125-139.

Chadwick, Darren; Wesson, Caroline y Fullwood, Chris (2013). Internet Access by People with Intellectual Disabilities: Inequalities and Opportunities. Future Internet, 5(3), 376-397.

Cocq, Coppélie y Ljuslinder, Karin (2020). Self-representations on social media. Reproducing and challenging discourses on disability. Alter, 14(2), 71-84.

Criado, J. Ignacio; Pastor, Vicente y Villodre, Julián (2018). Internet y discapacidad. Un análisis de las oportunidades y de los desafíos de las redes sociales digitales en el ámbito de la discapacidad. CEF, 11, 99-117.

Deriss, Mohammad Javad (2019). Review of topics related to autism spectrum disorder on Twitter. Network Modeling Analysis in Health Informatics and Bioinformatics, 8(14).

Dobransky, Kerry y Hargittai, Eszter (2016). Unrealized potential: Exploring the digital disability divide. Poetics, 58(3), 18-28.

Dube, Nqobani (2020). The tragedy of the hidden lamps: In search of disability rights activists from the global south in the digital era. En Berghs, María; Chataika, Tsitsi; El-Lahib, Yahya y Dube, Kudakwashe (Eds.). The Routledge handbook of disability activism (pp. 247–257). Routledge.

Enajeh, Salem Mohamad Ali; Cavus, Nadire y Ibrahim, Dogan (2018). Development of a voice recognition based system to help physically disabled people use the facebook. Qual Quant, 52(Suppl 2), 1343–1352.

Ellis, Katie y Goggin. Gerard (2018). Disability and media activism. En Meikle, Graham (Ed.), The Routledge Companion to Media and Activism (pp. 355-364). Routledge.

Ellis, Katie y Kent, Mike (2016). Disability and social media: global perspectives. Routledge.

Evans, Heather D. (2019). ‘Trial by fire’: Forms of impairment disclosure and implications for disability identity. Disability & Society, 34(5), 726-746.

Foster, Jordan y Pettinicchio, David (2021). A model who looks like me: communicating and consuming representations of disability. Journal of consumer culture, 22(3), 579-597.

Freeman, Linton (2004). The development of social network analysis. A study in the sociology of science, 1(687), 159-167

Furr, June B.; Carreiro, Alexis y McArthur, John A. (2016). Strategic approaches to disability disclosure on social media. Disability & Society, 31(10), 1353-1368.

Gelfgren, Stefan; Ineland, Jens y Cocq, Coppélie (2022). Social media and disability advocacy organizations: caught between hopes and realities. Disability & Society, 37(7), 1085-1106.

Goffman, Erving (1963). Stigma. Spectrum.

Gómez Marí, Irene; Tijeras Iborra, Amparo; Manzanera Hernández, Salvador Miguel y Tárraga Mínguez, Raúl (2022). La discapacidad es trending topic: análisis del impacto en Twitter de diez campañas de sensibilización. Prisma Social: revista de investigación social, (36), 142-165.

Hoppestad, Brian Scott (2007). Inadequacies in Computer Access Using Assistive Technology Devices in Profoundly Disabled Individuals: An Overview of the Current Literature. Disability and Rehabilitation. Assistive Technology, 2(4), 189-199.

INE (2022). Encuesta de discapacidad, autonomía personal y situaciones de dependencia. Madrid: INE.¶m1=PYSDetalle¶m3=1259924822888

Ineland, Jens; Gelfgren, Stefan y Cocq, Coppélie (2019). Negotiating authority: Disability, interactions and power relations on twitter. Scandinavian Journal of Disability Research, 21(1), 238-249.

Jaeger, Paul T. (2012). Disability and the Internet: Confronting a Digital Divide. Boulder, CO: Lynne Rienner Publishers.

Kaleel, Shakira-Banu y Abhari, Abdolreza (2015). Cluster-discovery of Twitter messages for event detection and tren-ding. Journal of computational science, 6, 47-57.

Lapierre Acevedo, Michelle (2023). Activismo digital de mujeres con discapacidad en Instagram: análisis de tres casos en Chile. Cuadernos.Info, (54), 225–246.

Li, Hanlin; Bora, Disha; Salvi, Sagar y Brady, Erin (2018). Slacktivists or activists? Identity work in the virtual disability march. Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems.

Liao, Sara (2019). # IAmGay# What about You?: Storytelling, discursive politics, and the affective dimension of social media activism against censorship in China. International Journal of Communication, 13, 2314–2333.

López Cepeda, Ismael; Mañas Viniegra, Luis y Vivar Zurita, Hipólito (2021). Los derechos fundamentales de las personas con discapacidad a través de los discursos sociales de las principales entidades sobre discapacidad en España. JANUS.NET, e-journal of International Relations, 12(1), 99-118.

Mann, Benjamin (2018). Rhetoric of Online Disability Activism: #CripTheVote and Civic Participation. Communication, Culture and Critique, 11(4), 604-621.

Mañas Viniegra, Luis; Llorente Barroso, Carmen y López Cepeda, Ismael (2022). "La auto-representación de las personas con discapacidad en redes sociales." en Comunicación y pluralidad en un contexto divergente, 193-209. Dykinson

Mitchell, Fallon R.; Van Wyk, Paula M. y Santarossa, Sara (2021). Curating a culture: The portrayal of disability stereotypes by paralympians on Instagram. International Journal of Sport Communication, 14(3), 334-355.

Mohammed Shahin, Yasmin (2022). The effectiveness of a treatment program based on the use of short video clips improving the language skills of intellectual disabilities Children who able to learn. Journal of Research in Curriculum Instruction and Educational Technology, 8(2), 175-208.

Moral, Eva; Huete, Agustín y Díez, Emiliano (2022) #MeCripple: ableism, microaggressions, and counterspaces on Twitter in Spain. Disability & Society.

Oliver, Mike (2004). If I had a hammer: The social model in action. En Swain, John; French, Sally; Barnes, Colin y Tomas, Carol (Eds.). Disabling barriers. Enabling environments (2ª Ed.) (pp. 7-12). Sage.

Pal, Sohum (2019). Crip Twitter and Utopic Feeling: How Disabled Twitter Users Reorganize Public Affects. Lateral, 8(2).

Pavlova, Alina y Berkers, Pauwke (2020). Mental health discourse and social media: Which mechanisms of cultural power drive discourse on Twitter. Social Science & Medicine, 263, 113250.

Pearson, Charlotte y Trevisan, Filippo (2015). Disability activism in the new media ecology: campaigning strategies in the digital era. Disability & Society, 30(6), 924-940.

Pérez Dasilva, Jesús Ángel; Meso Ayerdi, Koldobika y Mendiguren Galdospin, Terese (2020). Fake news y coronavirus: detección de los principales actores y tendencias a través del análisis de las conversaciones en Twitter. El profesional de la información, 29(3), e290308.

Pritchard, Erin (2021). Using Facebook to Recruit People with Dwarfism: Pros and Pitfalls for Disabled Participants and Researchers. Scandinavian Journal of Disability Research, 23(1), 85–93.

Pullin, Graham (2011). Design meets disability. MIT Press

Quadri, Safa; Karusala, Naveena y Arriaga, Rosa I. (2018). #AutismAwareness: A Longitudinal Study to Characterize Tuiting Patterns for Indian and US Users. ICPS Proceedings, 11-19.

Raghavendra Parimala; Wood Denise; Newman Lareen y Lawry Jan (2012). Why aren’t you on Facebook? Patterns and experiences of using the Internet among young people with physical disabilities. Technology and Disability, 24(2), 149–162.

Rugoho, Tafadzwa (2020). Social Media Influences on Youth with Disabilities in the Global South. En Frau-Meigs, Divina; Kotilainen, Sirkku; Pathak-Shelat, Manisha; Hoechsmann, Michael y Poyntz, Stuart R. (edits). The Handbook of Media Education Research, (pp. 105-111). Wiley Blackwell.

Sarkar, Tanushree; Forber-Pratt, Anjali J.; Hanebutt, Rachel y Cohen, Mae (2021) Good morning, Twitter! What are you doing today to support the voice of people with #disability?: disability and digital organizing. Journal of Community Practice, 29(3), 299-318,

Schellewald, Andreas (2021). Communicative forms on TikTok: Perspectives from figital ethnography. International Journal of Communication, 15, 1437-1457.

Shpigelman, Carmit Noa (2017). Leveraging social capital of persons with intellectual disabilities through Facebook participation: The perspectives of family members and direct support staff. Intellectual and developmental disabilities, 55(6), 407-418.

Smieszek, Mateusz y Borowska-Beszta, Beata (2017). Nethnographic Research Report on Families with Members with Disabilities in Social Media and Facebook. Psycho-Educational Research Reviews, 6(2), 89-102.

Stamou, Anastasia G.; Alevriadou, Anastasia y Soufla, Fenia (2016). Representations of disability from the perspective of people with disabilities and their families: a critical discourse analysis of disability groups on Facebook. Scandinavian Journal of Disability Research, 18(1), 1-16.

Södergren, Jonatan y Vallström, Niklas (2022). Disability in influencer marketing: a complex model of disability representation. Journal of Marketing Management, DOI: 10.1080/0267257X.2022.2144418

Suriá, Raquel (2017). Redes virtuales y apoyo social percibido en usuarios con discapacidad: análisis según la tipología, grado y etapa en la que se adquiere la discapacidad. Escritos de Psicología, 10(1), 31-40.

Tjokrodinata, Charlie; Bangun, Cendera Rizky; Dinansyah, Fakhriy y Farmita, Artika Rachmi (2022). Gamers with different ability and the role of EAI (E-Sports ability Indonesia). Jurnal Interaksi: Jurnal Ilmu Komunikasi, 6(1), 52-66.

Trevisan, Filippo (2020). “Do You Want to Be a Well-Informed Citizen, or Do You Want to Be Sane?” Social Media, Disability, Mental Health, and Political Marginality. Social Media + Society, 6(1).

Vashistha, Aditya; Cutrell, Edward; Dell, Nicola y Anderson, Richard (2015). Social media platforms for low-income blind people in India. En Proceedings of the 17th international ACM SIGACCESS conference on computers & accessibility.

Werner, Shirli y Shpigelman, Carmit Noa (2019). Information and communication technologies: where are persons with intellectual disabilities? Israel Journal of Health Policy Research, 8(6).

Williams, Shirley A.; Terras, Melissa M. y Warwick, Claire (2013). What do people study when they study Twitter? Classifying Twitter related academic papers. Journal of documentation, 69(3), 384-410.

Wu, Shaomei; Hofman, Jake M.; Mason, Winter A. y Watts, Duncan J. (2011). Who says what to whom on Twitter. Proceedings of the 20th International Conference on world wide web - WWW ’11, 705-714.

Zhang, Ziqi y Ahmed, Wasim (2019). A comparison of information sharing behaviours across 379 health conditions on Twitter. International Journal of Public Health, 64, 431-440.

Author notes

* Associate Professor at the Journalism Department

** Member of the ‘Gureiker’ Research Group of the Basque University System

*** Senior Lecturer at the Journalism Department

**** Lecturer at the Journalism Department

***** Senior Lecturer in Journalism

****** Lecturer

Additional information

Translation to English : LinguaVox S.L.

To cite this article : Mendiguren Galdospin, Terese; Meso Ayerdi, Koldobika ; Pérez Dasilva, Jesús Ángel; Ganzabal Learreta, María; Larrondo Ureta, Ainara; & Peña Fernández, Simón. (2023). Twitter and Disability Activism: Leadership and Relevant Topics in the Online Conversation. ICONO 14. Scientific Journal of Communication and Emerging Technologies, 21 (2).

Cómo citar
ISO 690-2
ICONO 14, Revista de comunicación y tecnologías emergentes

ISSN: 1697-8293

Vol. 21

Num. 2

Año. 2023

Twitter and disability activism: leadership and relevant topics in the online conversation

Terese Mendiguren Galdospin 1, Koldobika Meso Ayerdi 1, Jesús Ángel Pérez Dasilva 1, María Ganzabal Learreta 1, Ainara Larrondo Ureta 1, Simón Peña Fernández 1