Cripping Digital Storytelling: Disability, Accessibility, and Celebrating Difference

Narration numérique crip : handicap, accessibilité et célébration de la différence

Kathleen C. Sitter
Faculty of Social Work, University of Calgary, 2500 University Drive NW, T2N 1N4, Calgary, Alberta, Canada

Brooke Allemang
Faculty of Social Work, University of Calgary, 2500 University Drive NW, T2N 1N4, Calgary, Alberta, Canada

Mica R. Pabia
Faculty of Social Work, University of Calgary, 2500 University Drive NW, T2N 1N4, Calgary, Alberta, Canada

Emma Gaunt
Faculty of Social Work, University of Calgary, 2500 University Drive NW, T2N 1N4, Calgary, Alberta, Canada

Ana Herrera
Faculty of Social Work, University of Calgary, 2500 University Drive NW, T2N 1N4, Calgary, Alberta, Canada

Bruce Howell
Calgary SCOPE Society, 219 18 Street SE, T2E 6J5, Calgary, Alberta, Canada

Abstract

The authors report findings from an 11-month research study where disabled adults created digital stories about life-stage transitions related to employment, post-secondary, and community living. While results about transitions have been published elsewhere, this article focuses on the online digital storytelling process as experienced by disabled adults. It begins with a brief description of crip theory and its relationship to disability. Next is an overview of the research design: a two-phased process where 13 post-secondary disabled youth were trained as digital storytelling peer-facilitators, and subsequently co-facilitated a series of digital story workshops over 8 months involving 34 disabled participants. Peer-facilitators and participants completed pre- and post-workshop surveys. Responses were analyzed guided by crip theory and content analysis. The second half of the article reports on survey findings which indicated several themes: disability pride, centering disability perspectives, the importance of crip time, and the need to consider community connection. It ends with a discussion and considerations in designing and replicating accessible online digital storytelling workshops to remove ableist barriers, amplify community, and ultimately celebrate difference.

Résumé

Les auteur·es rapportent les résultats d’un projet de recherche de onze mois où des adultes handicapés ont créé des histoires numériques sur les transitions de la vie liées à l’emploi, aux études postsecondaires et à la vie communautaire. Bien que des résultats sur les transitions aient été publiés ailleurs, cet article se concentre sur le processus de narration numérique en ligne tel qu’il est vécu par les adultes handicapés. Il commence par une brève description de la théorie crip et de sa relation avec le handicap. Un aperçu de la méthodologie de recherche suit. Le projet a été divisé en deux phases où 13 personnes handicapées étudiant au postsecondaire ont d’abord reçu une formation de paires-animatrices et pairs-animateurs de narrations numériques et ont ensuite coanimé une série d’ateliers d’histoire numérique pendant 8 mois auxquels 34 personnes handicapées ont participé. L’équipe d’animation et les personnes participantes ont rempli un sondage avant et après l’atelier. Les réponses ont été analysées en se basant sur la théorie du crip et l’analyse de contenu. La seconde moitié de l’article rend compte des résultats des sondages desquels plusieurs thèmes ont émergé, comme la fierté par rapport au handicap, l’articulation autour des perspectives du handicap, l’importance de la temporalité crip et la nécessité de tenir compte des liens avec la communauté. L’article se conclut par une discussion et des considérations sur la conception et la reproduction d’ateliers de narration numérique en ligne accessibles pour supprimer les barrières capacitistes, amplifier le sentiment de communauté et, à terme, célébrer la différence.

Keywords: Disability, crip theory, crip time, digital storytelling, accessibility, disability pride

Acknowledgement

This research was undertaken, in part, thanks to funding from the Canada Research Chairs Program (CRC2019-00219)


Introduction

Digital storytelling, a group-based format where people create short videos about a personal experience, continues to garner attention as both a research method and a storytelling process, particularly when working with marginalized communities. However, there is a paucity of scholarship documenting how this process can support inclusion, particularly for disabled people. When considering the ways that systems and spaces are inaccessible and uphold participation barriers for many disabled people, it is critical to understand how to foster first-person accounts of life experiences for disabled persons while simultaneously ensuring ableist [1] processes are mitigated. The authors report findings from an 11-month research study where disabled adults created digital stories about life-stage transitions related to employment, post-secondary, and community living. While results about transitions have been published elsewhere (Sitter, Allemang, & Pabia, 2022), this article focuses on the online digital storytelling process as experienced by disabled adults. It begins with a brief description of digital storytelling followed by crip theory and its relationship to disability. Next is an overview of the research design: a two-phased process where 13 post-secondary disabled youth were trained as digital storytelling peer-facilitators, and subsequently co-facilitated a series of digital story workshops over 8 months involving 34 disabled participants. Peer-facilitators and participants completed pre- and post-workshop surveys. Responses were analyzed guided by crip theory and content analysis. The second half of the article reports on survey findings which indicated several themes experienced by participants and peer-facilitators involved in the study: disability pride, centering disability perspectives, the importance of crip time, and the need to consider community connection. The article ends with a discussion on the implications of the findings, particularly in designing and replicating accessible online digital storytelling workshops to remove ableist barriers, amplify community, and ultimately celebrate difference.

Literature Review

Digital Storytelling

Digital storytelling typically involves a group-based format where people create their own individual stories by combining still and moving images, sound, and narrative. Lambert (2002) identifies seven main components of digital stories: 1) lived experience, 2) first person voice, 3) self-revelation, 4) the use of images, 5) soundtrack, 6) intention, and 7) brevity in length. Digital storytelling has been used in a variety of community-based action research projects (De Jager, Fogarty, Tewson, Lenette, & Boydellm, 2017) and with a variety of marginalized groups, including Indigenous peoples, refugees, queer activists (Hancox, 2012; Lenette et al., 2015; Vivienne & Burgess, 2012) and disabled youth (Matthews & Sunderland, 2013; Ofoegbu et al., 2020; Rice et al., 2015).

In the area of disabilities, Ofoegbu and colleagues (2020) analyzed the usage of digital storytelling with young disabled athletes. In their study, the intervention significantly reduced burnout amongst the youth, with results maintained at three month follow up. Rice et al. (2015) also explored the diversity of disabled voices through digital stories. These scholars challenged the overarching voice of white men in wheelchairs in the disability community and offer digital storytelling as a tool for self-representation through their project ReVision, where the diversity of disabled voices is centered and explored (Rice et al., 2015). The project positioned digital storytelling as art activism and put disability representation at the center, where digital storytelling allowed for telling complex experiences through multimodal media. The aesthetic and narrative possibilities further opened space to disrupt and challenge ableist representations (Rice et al., 2015, 2016).

Crip Theory and Disability

The social model of disability frames disability as socially constructed, where systems, attitudes, and the environment create barriers that prevent people from fully participating in society. Interactions with stereotypes, discrimination, and social oppression are central to fostering ableism (Bogart & Dunn, 2019). Ableism has many forms, but can be broadly defined as practices, beliefs and perspectives that uphold non-disabled beings as superior. This hegemonic ableist norm is the measure of structures supported by economic systems, educational processes, environmental designs, and social encounters that are built and planned for neurotypical non-disabled persons (Kafer, 2013). A social and built environment conceived without considering difference is the foundation for the dominant discourse of disability as deficit, undesired and invisible (Kafer, 2013). Crip theory emerges as a response to this ableist ideology.

‘Crip’, initially a derogatory term, was reclaimed early in the 21st century by parts of the disability community in pride and defiance (McRuer & Cassabaum, 2021). Crip theory combines disability studies with queer theory to problematize hegemonic norms whilst amplifying disabled voices across intersections such as gender, race, and class (McRuer, 2006). Both crip theory and queer theory are rooted in activism, where Sandahl (2003) describes the similarities between these communities as they both “share a history of injustice; both have been pathologized by medicine; demonized by religion; discriminated against in housing, employment and education; stereotyped in representation; victimized by hate groups; and isolated socially, often in their families of origin” (p. 26).

Crip theory questions why some bodies/minds are normalized, while others are pathologized (Ljuslinder, Ellis & Vikstrom, 2020). Similarly, ‘cripping’ exposes exclusion, able-bodied/minded norms and ableist language, structures and attitudes (Sandahl, 2003). Cripping challenges taken-for-granted ‘knowledge’ created through oppressive institutions of power, and how this affects disabled individuals (Sandahl, 2003). One such exemplar is crip time. Crip time criticizes normative time as problematic, and only applicable to part of the population (Ljuslinder, Ellis & Vikstrom, 2020). As explained by Kafer:

Crip time is flex time not just expanded but exploded; it requires re-imaging our notions of what can and should happen in time, or recognizing how expectations of ‘how long things take’ are based on very particular minds and bodies. Rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds (2013, p. 27).

Baril (2016) further describes three ways to understand crip time: 1) the extra time needed to perform a task due to barriers of ableist time, such as extra time needed to use augmented communication devices or to move in an inaccessible space; 2) society considers this time as ‘wasted time’ – unproductive, slow, and not up to normal standards; and 3) flexible, individualized temporalities are more conducive to individuals thriving than one fixed, ‘normal’ temporality.

Correspondingly, the social construct of a life course is informed by ideas about a human life from a heteronormative, economically productive, non-disabled life (Ljuslinder et al., 2020). For example, it is expected that life-transitions from child to adulthood hold key markers such as getting married, finding a home, having children, and working during the 18-30 age stage. For many disabled persons, some of these transitioning steps are delayed or excluded, which also illustrates the constrictive structure of life-course theory as a natural, achievable, or desirable progression. Similarly, Samuels (2017) illustrates how crip time is purposely disruptive, stating, “Crip time is time travel. Disability and illness have the power to extract us from linear, progressive time with its normative life states and cast us into a wormhole of backward and forward acceleration, jerky stops and starts, tedious intervals and abrupt endings” (n. p.). In this way, crip time is applicable not only to the disabled community, but to non-disabled individuals as well.

Crip connection is another example of crip theory in praxis. Crip connection, i.e., crip solidarity, is when disabled individuals come together and advocate together (Mingus, 2010). Sandahl (2003) describes cripping as a way to build community. Often, disabled voices are silenced under the oppression of discriminatory ableism, and individuals are forced to pass as able-bodied/minded (if possible) in order to fit into an ableist society and avoid discrimination (Sandahl, 2003). Crip connection is a recognition of disability pride, and of the strength that comes from the diversity of the disability community brought together. It is uniting with other disabled individuals, recognizing how ableism affects communities, and orchestrating how we can resist this as a collective.

Cripping and Digital Storytelling

Through cripping digital storytelling, we honour different ways of knowing, being and doing in the disability community. Digital storytelling offers an opportunity for connection amongst storytellers given its inherently personal nature. However, there is limited research on this lens being applied to digital storytelling with disabled individuals, highlighting a gap in the literature. For instance, the concept of crip connection within digital storytelling has not been explicitly explored and concomitantly, the scholarly literature has yet to explicate relationships between time and temporality in the context of digital storytelling with disabled adults, which presents a rich opportunity to untangle these concepts guided by their perspectives, particularly in an online forum. There is also a paucity of research that considers its delivery using peer mentors, a commonly used approach in disability research and practice (Alexander et al., 2021; Hernandez, 2005; Thompson et al., 2018). Peer mentorship programs, for instance, have been developed to support students with intellectual disabilities in post-secondary education, with a multitude of benefits resulting for both mentors and students (Farley, Gibbons, & Cihak, 2014). Given the growing interest in the use of digital storytelling within the disability community (Bliss, 2017; Manning, 2010; Rice & Chandler, 2019; Saridaki & Meimaris, 2018), it is critical to explore the design and delivery of digital storytelling and the facilitators and barriers to creating a space for disabled adults to connect, challenge hegemonic notions of time, and allow for the reclamation of one’s disability identity.

Background

This article reports on a sub-set of findings from an 11-month study of an online digital storytelling intervention where disabled adults[2] created digital stories about their life-transition experiences related to employment, education, and community living. Results about skills and capacity building were published elsewhere (see Sitter et al., 2022). Here, the authors focus on findings based on pre-and post-workshop surveys completed by the participants based on their experiences of the intervention.

Methods

Study Design

This study, titled “My life. My story.” aimed to design, implement, and evaluate a peer-facilitated digital storytelling workshop intervention for adults with developmental disabilities facing life-stage transitions in the areas of education, employment, or living. It consisted of two phases of workshop delivery and evaluation: 1) online digital storytelling training workshops for youth peer-facilitators, and 2) online digital storytelling workshops for participants, which were co-facilitated by peer-facilitators. Both workshop streams consisted of six workshop sessions over a two-week period, with peer-facilitators and participants learning the elements of digital stories, receiving training in video-editing software, creating their own digital stories, engaging with research staff and peers, and sharing their digital stories with the group. There were minor differences between the delivery of the two workshop streams based on the aims of each which are described below. Using a series of online surveys offered at three timepoints for both peer-facilitators and participants (pre-workshop, post-workshop, three-month post-workshop), this project assessed the impact of the workshop on literacy, multimedia, communication, and leadership skills. This article presents an analysis of the open-ended survey responses from both groups surrounding perceptions of the workshop, and key learnings from the process of designing and delivering the intervention.

Phase 1: Peer-Facilitator Workshop Recruitment. Phase 1 of this study focused on recruiting peer-facilitators who would receive training in digital storytelling and facilitation and were then offered the opportunity to assist in the delivery of the Phase 2 participant workshops. Peer-facilitators were recruited by study promotion on social media and distributing information to Canadian post-secondary institutions, and relevant disability-focused organizations and community groups. Eligibility criteria for peer-facilitators included: being enrolled (at least part-time) in a Canadian post-secondary institution, self-identifying as having a developmental disability, and being 18-30 years old. Individuals who expressed interest in becoming a peer-facilitator were invited to a Zoom call with a research team member to discuss the study eligibility criteria, the workshop schedule, and workshop consent and/or assent forms. Consent and/or assent forms and confidentiality forms were signed by all participants (and any participant’s support workers) prior to the workshop.

Phase 1: Peer-Facilitator Workshop Format. Peer-facilitator workshops were delivered utilizing Zoom video software. Each workshop took place over two weeks and involved six two-hour sessions and strived for a 1:1 facilitator: trainee ratio, with a maximum of eight trainees in one workshop. The daily schedule included tutorials, group discussions, and individual digital story production time with a facilitator. The approach to the peer-facilitator workshop was “knowing through doing,” i.e., learning how to facilitate by creating a digital story. The purpose of these peer-facilitator training workshops was to: 1) familiarize trainees with the elements of digital story creation, 2) provide in-training opportunities to build communication, multimedia, and leadership skills (including reflective practices) through targeted workshop activities; and 3) for staff facilitators to receive feedback about the delivery and format for the participant workshop. Staff facilitators worked alongside trainees in developing leadership skills and practicing various facilitation approaches. The final day of the workshop included a virtual screening where each trainee shared their digital story followed by a discussion. It is important to note that at the end of each workshop session, trainees were asked to share opinions and ideas about the workshop process, particularly production time, storytelling, materials, and overall delivery. The final workshop session also included a 30-minute discussion about these topics and suggestions moving forward. These discussions were instrumental in shifting the workshop, especially the delivery and materials, in significant ways. Upon completion, individuals received a certificate and were also offered ongoing opportunities to co-facilitate upcoming participant workshops. Peer-facilitators received honorariums for all subsequent workshops they facilitated equivalent to the pay of staff facilitators.

Phase 2: Participant Recruitment. Phase 2 included participant workshops. Purposive sampling was used. Purposive sampling involves selecting individuals due to their unique position to the topic of inquiry (Schutt, 2005). Recruitment was primarily through contacts with disability-centred programs, organizations, and social media. Participants had to live in Canada, be 18-30 years old, self-identify as developmentally disabled, and have a potential life-stage transition in education, employment, and/or community living. Due to recruitment challenges, criteria were expanded to include individuals over 30 years who desired to reflect upon a significant life change in their youth. All participants signed consent and/or assent forms, and support workers signed confidentiality forms, as appropriate.

Phase 2: Participant Workshop Format. Prior to the workshop, participants received workshop and scheduling details. Workshops included six two-hour online sessions, typically took place over two weeks, with a 1:1 ratio (i.e., one facilitator to one participant) with no more than eight participants in a workshop. Participant workshops included story review, group discussions, editing tutorials, and individual production time with a facilitator. There were between 1-3 peer-facilitators who were active members of the facilitation team. The final day was the screening of the digital stories.

Study Collection and Analysis

Data collection included pre-, post-, and three-month post-workshop questionnaires for both participants and peer-facilitators. Questionnaires included Likert-type, closed, and open questions. Questionnaires were distributed and accessed primarily using the Qualtrics online platform (Qualtrics, 2022). Physical copies of the survey were provided as needed. Survey responses were kept anonymous by assigning each participant an individual study identification number. We held drop-in sessions prior to the workshop where participants could receive assistance from a research team member if needed. For the purposes of this article, we will focus on the results of the open-ended survey responses from both groups. There were four open-ended questions on the pre-workshop survey focused on motivations and hopes for the workshop, ten open-ended questions in the post-workshop survey exploring overall thoughts of the workshop (i.e., most/least liked components, core learnings, and connections with peers), and five open-ended questions in the three-month post-workshop survey about the maintenance and/or application of skills acquired in the workshop in other areas of life.

Analysis. We used qualitative content analysis as described by Graneheim and Lundman (2004) to interpret the open-ended survey responses offered by the peer-facilitators and participants. Specifically, analysis consisted of three research team members independently reading and re-reading the open-ended responses from both groups. Participant three-month post-workshop survey responses were excluded from the analysis due to the low response rate to this survey at the time of analysis. Analysis involved each research team member individually reviewing all opened-ended responses for each survey, creating smaller condensed meaning units for each response, and then a one to four-word "code" from the condensed meaning unit (Graneheim & Lundman, 2004). The research team met to review and discuss the survey codes that had emerged for each team member. These meetings also offered opportunities to further discuss concepts and codes in reaching agreement. After discussion, any question's response codes that the group determined to be accurate and applicable to other responses would then become a response “theme” or "sub-themes" of those questions. Each survey response's theme and sub-themes were then charted with appropriate quotes from responses. Once each survey question had response themes, the themes were reviewed and discussed by the group and synthesized into more significant overarching response themes for all surveys. Through these discussions core themes surrounding crip theory began to emerge, which are noted in the findings section.

Rigour and validity. Several strategies were utilized to apply quality criteria and achieve rigour in this project, following “Author” (2020)’s format of digital storytelling and validity criteria. The active involvement of peer-facilitators in the delivery of the Phase 2 workshops, and the engagement of participants throughout the intervention supported participatory validity, wherein those with lived experience of the phenomenon under investigation are included as key actors in the research (“Author”, 2020). Regarding data analysis, multiple coders were involved in coding, sorting and theming, and a series of meetings were held to resolve any conflicts and reach agreement during the coding process. During these meetings, research team members discussed their values, biases, and positionality in reference to the data (Holmes, 2020). With reflexivity in mind, all coders developed research journals/memos to document their assumptions and opinions about the data during the coding process (Holmes, 2020). Using thick description, we incorporated the voices of peer-facilitators and participants directly into the results section by including verbatim quotes to support each theme (Geertz, 1973).

Results

Between June 2021 and May 2022, 13 peer-facilitators and 34 participants took part in the online digital storytelling workshops. Peer-facilitators ranged in age from 19-29 years and participants ranged in age from 19-74 years, with individuals in both groups residing across Canada. Most peer-facilitators were female (63.6%), White (63.6%), and full-time post-secondary students (90.9%). Most of the participants were female (52.9%), White (50.0%), and facing an upcoming educational transition (38.2%). Demographic characteristics in both cohorts are presented in Tables 1 and 2. During the study period, we received a total of 13 pre-workshop, ten post-workshop, and five 3-month post-workshop survey responses from peer-facilitators involved in the digital storytelling project. We received 27 pre-workshop, 25 post-workshop and two 3-month post-workshop survey responses from participants who attended the online workshops. Based on our content analysis, four themes emerged from the open-ended survey data: 1) disability pride, 2) opportunity to centre disabled perspectives and experiences, 3) crip connection, community, and solidarity, and 4) crip time within the context of digital storytelling.

Table 1. Demographic characteristics of peer-facilitators (N=11*)
Demographic Characteristics %(n)
Gender identity
Female 63.6% (n=7)
Male 18.1% (n = 2)
Gender fluid or non-binary 9.1% (n = 1)
Transgender 9.1% (n = 1)
Age
19 years 27.3% (n = 3)
20 years 9.1% (n = 1)
21 years 9.1% (n = 1)
22 years 9.1% (n = 1)
23 years 18.1% (n = 2)
25 years 18.1% (n = 2)
26 years 18.1% (n = 2)
29 years 18.1% (n = 2)
Race
Arab/West Asian 9.1% (n = 1)
Black 9.1% (n = 1)
Filipino 18.1% (n = 2)
White 63.6% (n = 7)
Post-secondary educational status
Full-time student 90.9% (n=10)
Part-time student 9.1% (n=1)


*Two peer facilitators did not complete the demographics form

Table 2. Demographic Characteristics of participants (N=34)
Demographic Characteristics % (n)
Gender identity
Female 52.9% (n=18)
Male 41.2% (n = 14)
Gender fluid or non-binary 5.9% (n = 2)
Age
19 years 8.8% (n = 3)
20 years 5.9% (n = 2)
21 years 14.7% (n = 5)
23 years 2.9% (n = 1)
24 years 8.8% (n = 3)
25 years 5.9% (n = 2)
26 years 5.9% (n = 2)
28 years 11.8% (n = 4)
29 years 8.8% (n = 3)
30 years 8.8% (n = 3)
31 years 2.9% (n = 1)
33 years 2.9% (n = 1)
37 years 2.9% (n = 1)
50 years 2.9% (n = 1)
58 years 2.9% (n = 1)
74 years 2.9% (n = 1)
Race
Black 14.7% (n=5)
Chinese 5.9% (n = 2)
Hispanic or Latin American 2.9% (n = 1)
Indigenous 11.8% (n = 4)
White 50.0% (n = 17)
Other 2.9% (n = 1)
Prefer not to answer 11.8% (n = 4)
Upcoming life-stage transition*
Education 38.2% (n=13)
Employment 35.3% (n = 12)
Living 20.6% (n = 7)
Other 14.7% (n = 5)
Prefer not to answer 11.8% (n = 4)

*Participants could select more than one response so percentage of cases sum to >100%

Disability Pride: "It's Okay to Tell My Story"

Through the digital storytelling workshop, peer-facilitators and participants experienced opportunities to celebrate themselves and claim their stories and disabilities. Survey responses revealed peer-facilitators and participants felt a sense of ownership over their journeys and life experiences in new ways following the workshop, “I learned it’s okay to tell my story” (Peer-facilitator). Threads of inner strength, self-discovery and personal growth were woven throughout the responses. As shared by one peer-facilitator, “[I learned] about our own story and that I’m strong”. The intervention appeared to support confidence and pride in their accomplishments. One participant explained, “I learned how to voice over videos and be more confident in recording my voice”, while another outlined, “[I learned] to recognize all the things I have done in my life and that I can continue doing”. They appreciated learning “new ways to tell my story in my own voice” (Participant), “finding a way to express my creativity” (Participant), and conveyed joy in getting to share their stories with others.

Many alluded to the positive environment of the workshop itself, primarily describing supportive staff and facilitators as contributing to people’s confidence in sharing their stories and collaborating with others, “I enjoyed the working environment that was created by the friendly participants and facilitators. There was good communication and everyone seemed to work well together” (Peer-facilitator). The workshop structure was also conducive to participants’ learning by providing individualized support to each participant based on their preferences: “I really liked that my team gave me time to tinker around in WeVideo. When I had questions, they jumped right back in! I liked how they ask me what is the best way to help me” (Participant).

Peer-facilitators and participants highlighted the transformative nature of the workshop in amplifying their existing strengths and skills “I do believe I have abilities [sic] to create a story about myself” (Participant). Some individuals entered the workshops with extensive knowledge of films and video-editing experience, for instance, and hoped to build on these passions, “I have a lot of movies in my head and some I make on my own and I would like to take it to the next level” (Participant). Importantly, participants were interested in claiming their power and taking up space by “being in front of the camera” (Participant) and “showing the power of many ways of communicating [a story]” (Participant). These responses indicate that through the digital storytelling process, participants challenged ableist notions of story: what types of stories should be told and in what ways. Creating an open-ended and flexible methodology, workshops held space for participants and peer-facilitators to narrate their experiences through the expressive tools and processes of digital storytelling. Some stories displayed digitally created superheroes, others used old portraits or images from nature. Some stories were silent to sound, whereas others incorporated singing, whistling, and soundscapes. Some stories disrupted the typical constructs of the core elements of what constitutes story: one such example included sharing words of things the author liked, interspersed with brief moments of singing. Expressing neurodivergent sensory experiences, the videos also disrupted dominant stereotypes about disability. For instance, the film, “Science (Fiction)”, addressed popular media stereotypes about Autism and its negative impact on people’s self-identity. Another story, “Walking with a Parent with Disability”, narrated the experience of parenting as a disabled adult. Many stories also portrayed academics, sports and achievements, and favourite activities. Overall, the project My life. My story. offered a counter-story to ableist systems and representations.

Participants felt the workshop offered them tools and skills that would be applicable in their futures. These skills ranged from technical video editing skills to communication, leadership, and storytelling. Participants, in particular, felt confident in their newly discovered abilities to compose, record, and edit their own digital stories, “I learn lot about technology and storytelling”. Some even expressed their hopes for the future, including “making my own opportunities using the skills of video making” (Participant). Peer-facilitators, specifically, reflected on how their involvement in delivering the workshops supported interpersonal skill development. They learned about groupwork, flexibility, and meeting people where they are at, “no one approach works, every person is different. Spending the time and coming up with different way to communicate with the other person to fulfill their stories has been one of my favourite things” (Peer-facilitator). Others echoed positive sentiments about how their communication skills blossomed throughout the workshop, “I was able to have more experience in communication which allowed me to share more information about me in a positive manner and environment” (Peer-facilitator).

While most responses indicated positive experiences towards claiming their stories and disabilities, a peer-facilitator also shared her desire for greater trust in her abilities:

I completely understand the need for organization and schedule, but I do wish that I was given more trust when I claimed that I work differently than how the check-in system is designed, and that I would still enjoy the experience and complete the project, just in my own way.

This feedback further supports the need for crip time guidance in the delivery format, it also addresses the need for balance in meeting people where they are at while concomitantly ensuring everyone is able to complete their story within the workshop. Notably, the research team engaged in critical reflection and dialogue about the digital storytelling intervention following each workshop to incorporate participant and peer-facilitator feedback and tailor our approaches accordingly. This was built into the process early on. Specifically, 30 minutes before and after every two-hour workshop, session facilitators (and eventually peer-facilitators) would meet. For example, at the end of each session, facilitators would share any positives or issues that might have occurred during the session, and discuss how best to adjust delivery concerns to support participants in their experiences. In the subsequent post-session “check in” facilitators discuss how it unfolded. These discussions were critical in working together to be both responsive and flexible in the moment in order to effectively meet participants where they were at. The process also supported the team to address diverse ways of learning while resisting ableist norms. Examples of how the workshop approaches were adapted in response to participant needs included quickly editing tutorials so they became more visual than text-based and using interview-style format in storytelling to remove the pressure of developing a story that ascribed to a certain format.

Opportunity to Centre Disabled Perspectives and Experiences

Both pre- and post-workshop, peer-facilitators and participants shared how opportunities for research and video-editing, more specifically, were rare for disabled individuals. They expressed gratitude for the chance to take part in the project and have their stories told in new ways: “thank-you very much for giving me a way to tell my story in my own words” (Participant). A peer-facilitator reflected on the dearth of opportunities that had been afforded to her as a disabled person from a small city:

I've spent a very large portion of my life believing that these types of opportunities just aren't out there and that telling my own story is a lonely endeavour. So, I am so grateful, as is the inner child dancing within me, to partake in something so transformative and healing for folks like me. Thank you for this opportunity! Coming from a relatively smaller city, there is not a lot of research or organizations working on disability justice - there really isn't the reach here.

As such, access to the digital storytelling workshop as an outlet for creativity, connection and skill-building was appreciated by many. This was captured by a peer-facilitator: “I liked the environment, the project, the chance to be creative and the medium I was working with.” One other peer-facilitator echoed similar sentiments about the opportunity to dabble in a new creative medium: “The whole idea is amazing and having that chance to create a mini film was fun and educational.” These reflections about the “transformative and healing” nature of this project emphasize the importance of creating spaces where disabled voices are centered and celebrated within research and the community, more broadly.

Another concept that arose in relation to the centering of disabled experiences was that of using one’s story to advocate and generate awareness about disabilities through the medium of short films. While many individuals spoke of the power of telling their own story in their own way on their own terms, they also described their hopes for using these stories as tools to educate others and engender positive change in their communities. These included “tell[ing] my story”, “let[ting] people know about me and my disability” and “how I have learned” (Participant). A key example of how disabled voices were centered in this research arose in the responses of nonverbal participants who shared their perspectives on the utility of digital storytelling for people who communicate without using words: “digital story telling is a good way for people who don’t use words to speak to tell their story”. Participants with complex communication needs expressed themselves in diverse ways, such as long pauses, typing in chat, emojis, eye or hand movement to communicate decisions with story focus, images, transitions, and process needs. The simplicity of the WeVideo software combined with the expressive possibilities of audiovisual communication allowed for diverse narrative forms to surface. For instance, one digital story shows a participant’s wayfinding experience on campus by filming her navigating paths to classrooms in her wheelchair. The story is a representation of the participant visually telling her learning while socially connecting in the process. Another example is a digital story where the participant narrates solely through images and close captions to share his complex journey of learning to speak. With another story, the audience witnesses a sign language narrative told by the participant in sharing her experience with online higher education. In sum, the workshop served as a creative outlet for participants and peer-facilitators to share and story experiences important to them, which further supported the survey findings indicating that this digital storytelling process was a constructive method of creative expression and communication. Participants also hoped to share their digital stories to inspire others: “[I hope to learn] how to share my story in a creative way. If I can, how to share videos that I make with others” (Participant). Another participant specifically described an interest in using their digital story to reach people using online methods: “[I hope to learn] how to share story and engage audience by using different platforms”. One participant shared their interest in developing a set of skills that could be applied to video editing in the future: “I want to learn how to make my own digital story and use that knowledge to create my own videos on different topics. Also want to inspire people” (Participant).

Crip Connection, Community, and Solidarity

Peer-facilitators and participants alike reflected on the power of sharing a space with disabled people where personal narratives and stories could be exchanged. As articulated by a peer-facilitator:

as a neurodivergent person, I've never had the opportunity to sit in a room (or, zoom call) with all neurodiverse and disabled people. There is something magical about crip connection, and this is not to romanticize, but rather speak into reality the experience of feeling less alone when surrounded by other disabled folk.

In fact, many people described “making new relationships and new connections” (Participant) as one of their hopes for attending the digital story workshop. Though challenging for some at first, many reflected on meeting the other participants as a highlight of the workshop, “it was fun. Meeting new people. It was hard at first but when you got started it got started is was going [sic] easier and easier” (Peer-facilitator). One participant shared, “I’ve learn I’m not alone in the world [sic]”, while another described they “learn[ed] from other peopl [sic] with disability” throughout the workshop. Given the often personal nature of the stories that were shared in the workshop, many described the ways in which this facilitated feelings of closeness or understanding among their peers, “…hearing their story’s made it to have connections so powerful” (Participant). Learning and growing alongside one another arose as another key concept in the surveys, “I think it was a good opportunity for me to collaborate with others and learn from and with them and from their stories” (Peer-facilitator). An overarching theme of ‘crip connection’ and community, or remaining in solidarity with other disabled people, permeated the peer-facilitator and participant survey responses. For instance, "I learned we all have or are going through difficult times in there [sic] lives. But life keep turning” (Participant). “Meeting everybody” (Participant), “getting to know other people” (Participant), and “having someone to bounce ideas off of” (Participant) were also described as benefits of the collaborative, group-based storytelling process.

As described, a unique feature of this workshop was the involvement of peer-facilitators in delivering the intervention. Disabled leadership and the chance to see similar others in positions of power appeared to be a well-liked feature of the workshop, given several participants endorsed connecting specifically with peer-facilitators throughout the process. Connection was noted to be extremely important by participants, particularly with peers, as half of respondents indicated they developed connections with either peers or peer-facilitators throughout the workshop. Opportunities to engage with peer-facilitators enhanced feelings of connectedness and mutual understanding among participants. As explained by one participant:

I was able to make connections with [two peer-facilitators] because they were able to understand my vision of how my digital story will flow. It was very easy to work with them, they helped me so much and they were very accommodating.

Another participant described their reasons for connecting with peer-facilitators specifically, “I felt like I could relate to a couple of people who have already done this” (Participant). The sense of community that was created within the workshop environment allowed for reciprocal learning and understanding. One peer-facilitator, for example, stated, “I felt comfortable to share and felt heard in this environment. I was also happy to be able to provide the same comfort to others”. As a means of fostering connection, early in the process, we integrated both jokes and icebreakers at the start and end of each two-hour session. This became a crucial point in our design for connection building among participants, facilitators and peer-facilitators as we engaged, laughed, and learned about one another during our time together. Survey responses from both groups demonstrated the value of sharing their stories with others and being able to witness and provide empathy and support to one another. This concept of mutual aid arose in another peer-facilitator’s words, “it was nice to be able to help others tell their stories. i like teaching people about using we video”.

Crip Time Within the Context of Digital Storytelling

The concept of temporality and time arose in several peer-facilitator and participant responses, illustrating its prominence throughout the intervention. Time was discussed in myriad ways post-workshop. The notion of ‘crip time’, or “re-imaging our notions of what can and should happen in time” (Kafer, 2013, p. 27) showed up in the range of experiences with the timing, schedule and structure of the workshop. Some participants, for example, felt the workshop was not long enough to allow for the establishment of meaningful connections with others: “I liked the facilitator but didn’t make a long-time connection. There wasn’t enough time to really get to know someone. It felt too short”. Others articulated not having adequate time to learn all of the skills and functionality of the video-editing software they were interested in due to the pace of the workshop: “Because of the limited time left and being that it was our last workshop day, I wasn’t shown how to do a couple of things that I was curious about doing”. The length of each workshop session also resulted in some participants dedicating personal time to their digital stories outside of scheduled meetings. However, it is important to note this depended on the level of detail participants wanted in their stories, the types of photographs/videos they hoped to include, and taking the lead on ensuring their vision of their final product was achieved, at their own pace. This was captured by a peer-facilitator, “I felt like I didn't have enough time within the classes to do work on the project, and so I had to work on it on my own time as well”. Finally, some peer-facilitators described their experiences sharing very personal stories, connecting with others, and then having the workshop end abruptly: “It seemed to go really quickly and then ended” (Peer-facilitator).

Contrarily, others found the virtual delivery format to be draining and that the workshops “took a lot of time” (Participant). Of note, the timing of the workshops varied from province to province, meaning some individuals attended workshop sessions in the evenings following full days of school, work, or community involvement. Given different preferences, needs, and learning styles, it was suggested that online resources be developed that could be viewed outside of scheduled workshop time to allow individuals to progress through the content at their own pace. A participant stated: “I wish that there was a tutorial video that people could watch in their own time, so that we would understand more of how the editing works”. Taken together, these points speak to the concept of flexible temporalities existing for different people and the necessity of adjusting the workshop environment to meet the needs of disabled participants.

Discussion

This article reports on the perspectives and experiences of disabled people who participated in a series of online digital storytelling workshops. The project challenged ableist representations of disability. Drawing from crip theory, this project’s methodological design enabled the celebration of difference through digital storytelling. The audiovisual language opened space for crip aesthetics and narratives to emerge, telling first-person experiences of disability. Many participants and facilitators problematized the social and media oppressive discourses of disability, supporting how self-representation is an essential tool for reclaiming disability identity, otherwise silenced and pathologized.

There are several considerations worth noting, particularly with delivery and recruitment. The workshop delivery required extensive resources to ensure a 1:1 ratio was always present. As this was online, at times a number of participants required support workers to assist with technology (e.g., turning on Zoom). Costs also included interpreters (sign-language, English as a second language), support in sending out surveys, purchasing copy-right free images as needed, and accessible software that could be used from different computers (e.g., Mac and PC). Extensive time was dedicated to developing surveys accessible via audio and in plain-language. Workshops also included 30-minute meetings pre- and post-sessions for peer-facilitators to connect, which, while important, did result in significantly long days for many, as most peer-facilitators had classes or work before and/or after the sessions. Each workshop involved approximately three sessions per week, over a two-week period. This schedule was in place to ensure the workshops were completed within a time frame but meant both participants and peer-facilitators had an extensive time commitment to the workshop over a short period. With consideration to crip time, there is an opportunity to consider how the format can be delivered over a more manageable timeline that may involve shorter sessions over longer periods of time that can guide the balancing of funding commitments, resources, and project timelines.

Recruitment also presented important learnings worth noting. This project was initially developed pre-pandemic, and then had to shift to online delivery. Recruitment was done first with a focus on a specific province, but was quickly opened up nationally. Balancing four different time zones and attrition in early stages required re-considering recruitment strategies. An important learning was that critical life-stage transitions for disabled persons are not as dominant in the original age target (i.e., 18-30) as many persons reached out who were 30+ and facing transitions, and wanted to share their experiences. This was echoed in stories with details about the process, time, and considerations with life-stage transitions such as moving out of parents’/caregiver’s home, parenting as a disabled adult, college experience, training and volunteer experiences, and employment stories. This learning also supported the role of crip time in fostering a deeper understanding of context and life-stage transitions. This is an area worth further consideration in disabled youth-focused research and recruitment parameters to ensure experiences are not inadvertently excluded due to age markers based on problematic life course assumptions. This was an ableist assumption, which we eventually addressed by opening up our recruitment. However, for future workshops, it would be important to lead without an age restriction.

A key learning in recruitment also included connecting with organizations, who had the ability to provide extra support as needed. There were several instances where organizations invited us to “take over” their sessions of a particular program or offering. This was an ideal scenario as the planning and coordinating could be done collaboratively and adjustments made as needed to ensure everyone was supported.

Crip theory as the foundation of building, delivering, implementing, evaluating, and adjusting digital storytelling workshops was a critical learning in addressing ableist norms in research designs and participatory processes. Ensuring meeting participants where they are at required flexibility and facilitation skills to shift focus as required, particularly in production methods. Not only to ensure the technology did not overpower the process, but in validating each participant’s pace and agency in decision-making of the storytelling process was also oriented to resist ableist norms. Completion of the story was a celebrated accomplishment and a critical component noted by participants, especially related to disability pride. Delivery format to ensure there are group discussions is also essential. All workshops began and ended with jokes/ice breakers, which was purposeful as it gave people an opportunity to laugh, chat, and share with one another. Production times with peer-facilitators were also special in not only completing stories, but to validate experiences. This was further echoed in group discussions (i.e., group production time) and the final screening where everyone celebrated their stories, their accomplishments, and their connection. Crip connection is a strong element in these processes and ensuring ample time is built in for both peer-facilitators and participants is key.

Endnotes

  1. The authors understand ableism as the beliefs and practices that systematically discriminate against disabled people, placing non-disabled as superior, where disabled people are in need to be cured and corrected.
  2. 100% of peer-facilitators and 82.6% of participants were 18-30 years of age. Due to recruitment challenges, this criterion was expanded to include disabled adults over 30 years of age who desired to reflect on or were facing a significant life change.

References