Draft:Celebratory Technology
Some autistic self-advocates have a paramount concern regarding autism lies not solely in its symptomatic manifestations, but rather in the pervasive social stigma that invariably accompanies its diagnostic label. Introducing a novel technological framework aimed at mitigating this stigma, I propose the implementation of Celebratory Technologies. Despite a recent surge in scholarly attention towards the experience of stigma among individuals on the autism spectrum, technological interventions have regrettably lagged behind this discourse.
Evidently, empirical findings illuminate the nuanced challenges faced by autistics, wherein the ostensibly neutral nature of the diagnostic label is starkly juxtaposed against societal perceptions, compelling individuals to navigate a precarious balance between disclosure and concealment, both of which often yield adverse repercussions. Moreover, empirical investigations underscore the acute sense of stigma experienced by adolescents grappling with social difficulties, with nearly 80% attributing such stigma to their autism diagnosis. Notably, delineations within academia reveal varying degrees of stigma, with male college students and those pursuing STEM disciplines exhibiting heightened levels of stigmatization in comparison to their counterparts in Humanities. Intriguingly, empirical observations extend the spectrum of stigma to encompass interpersonal domains, with implications for dating and marriage, wherein partnering with an autistic individual elicits pronounced societal disapproval. Equally noteworthy is the revelation that healthcare practitioners and educators, ostensibly pivotal figures in facilitating support and understanding, paradoxically exhibit heightened levels of stigma.
However, amidst these challenges, there exists a glimmer of hope, wherein firsthand interactions with autistic individuals, particularly within familial contexts, markedly attenuate perceptions of stigma. Notably, empirical research underscores the efficacy of two primary mechanisms in mitigating autism-related stigma: the cultivation of high-quality interpersonal encounters and the dissemination of accurate autism knowledge, both of which are predicated upon Contact Theory. Crucially, it is imperative to distinguish high-quality contact from superficial representations often propagated by mainstream media, which tend to valorize disabled individuals in a manner that perpetuates pity rather than genuine understanding.
These stigma-alleviating mechanisms hold promise for integration within existing socio-technical infrastructures, including popular social media platforms like Instagram and collaborative tools such as Zoom. Embarking upon this new paradigm, Celebratory Technologies aim to affirm disability identities by fostering meaningful encounters with disabled individuals within one's social sphere, thereby replacing entrenched stereotypes with personalized narratives that evoke empathy and appreciation. By harnessing the transformative potential of technology, we endeavor to catalyze a cultural shift towards inclusivity and understanding, thereby dismantling the barriers of stigma that continue to impede the full participation of autistic individuals within society.
Introduction
[edit]Celebratory technology is a technological paradigm first coined by Grimes and Harper in 2008.[1] This term has been revived to support individuals with disabilities while also celebrating their unique experience. The main goal behind celebratory technology is to empower individuals with disabilities by acknowledging their strengths, and designing for their differences rather than conforming to common conventions. Some of the relevant fields celebratory technology could be used in are areas of neurodivergent disabilities such as autism. Celebratory technology has the potential to enhance the experience of those with disabilities.
Through her personal experiences as an assistive technologist, Dr. Boyd was developing technologies that aided individuals with disabilities by helping them conform to social norms. Her recent research aims to refocus and target deficits in the public such as stigmatizing individuals with disabilities rather than working to change those with learning or physical disabilities.
This program aims to enrich academic knowledge and practical skills through educational and outreach initiatives focused on inclusive design practices. It will empower neurodivergent students, faculty, and staff to contribute to societal change and offer underserved students leadership and skill development opportunities through internships and research positions. At the conclusion of the grant period, all celebratory technology course materials will be freely accessible on Canvas.
The project will also expand its impact globally by collaborating on international hackathons, particularly in regions with significant autism stigma, such as Japan. These efforts aim to reduce social distances and promote acceptance of neurodiversity through innovative community and educational projects, including the development of a disability identity-affirming art installation that facilitates discussions without the need for physical presence. Planned activities include an international symposium and hackathons, fostering collaborations between students in neurodiverse teams to create new celebratory technologies. Support for these initiatives has been secured through partnerships with academic and industry leaders, including the Chiba Institute of Technology and notable advocates.
The 5 A's of Celebratory Technology
[edit]5 themes, called the 5 A's, work as a framework that helps navigate the nuances of celebrating neurodiversity with technology rather than perpetuate stigma with patronizing content. Celebration technology looks to break down standing social stigma by adhering to these principles. The 5 A's can be understood as a hierarchy-like list of concepts that represents the furthering of understanding and the breaking down of social stigma. The 5 A's are as follows:
- Awareness: To create effective celebration technology one needs to have acute awareness of both biophysical/mental effects of disabilities as well as social stigma surrounding them. Making the larger public aware and educated about disability is important to reduce stigma.[2]
- Acceptance: To not hold negative perceptions about people based on their disabilities. Once aware, work must be done to make sure the larger public accepts disabled people without stigma.[2]
- Accommodation: To make changes to the way the world is presented to disabled people in order to make their experience easier. This allows disabled people to perform the things required to live their life without assistance or stigmatizing themselves.[2]
- Advocacy: To take action to help disabled people in the world. It can take many forms, but the three preceding “A's,” which help reduce stigma, require people's advocacy to actually happen and work.
- Appreciation: Celebrating and accepting everyone's traits and unique features equally, focusing on neurodiversity over neurodivergence. Appreciating that everyone is different as opposed to looking at just disabled people as different.
The 5 A's are highlighted as a way to differentiate celebration technology from ‘inspiration porn,’ or the idea that current social standards often marginalize disabled individuals even when we attempt to celebrate them[3]. This framework seeks to navigate the nuances of celebrating neurodiversity with technology rather than perpetuate stigma with patronizing content.
Background
[edit]Originally emerging to highlight neurodiverse communities, Celebratory Technology resides within a similar neurodiversity technology ecosystem as Assistive Technology, Accessible Technology, Inclusive Technology, and CSCW. However, this term inculcates multi-facets - an avenue to reduce social stigmas, celebrate neurodiversity in humans and enable and promote these differences in an accessible technological fashion. Something particularly imperative with regard to this term is the granularity of its’ scope - having great positive impacts and serving both neurodiverse communities as well as those who are less aware of the importance of this concept. The concept of celebratory tech emerged as a response to traditional deficit-based approaches that often view neurodiversity through a lens of pathology or impairment. [2] Instead of focusing solely on the remediation or accommodation of deficits, celebratory tech seeks to highlight the strengths and capabilities of neurodiverse individuals and create environments that honor their diversity. At its core, celebratory tech is grounded in principles of inclusion, accessibility, empowerment, and agency. It aims to foster environments where neurodiverse individuals feel valued, respected, and supported, enabling them to thrive and contribute their unique talents to society. [4]
Currently, celebratory technology is continuing to reduce social stigmas of neurodiversity, with two possible solutions produced: changing these stigmas all together by educating the public on autism and fostering more contact with autistic people. [2] In regards to the former solution, positive interactions are being created and celebrated – hence the word "celebratory" in the term.
Purpose
[edit]In today's society, social stigma towards neurodivergence is an ongoing issue. Before celebratory technology, innovations for neurodivergent people focused on individual cases—objectifying individuals with disabilities for the sake of giving others a source of inspiration. Furthermore, though previous innovative technologies have worked to assist individuals with disabilities, these cases have also dealt with sensationalism—which augments the divide. [1]
Many current innovations inadvertently contribute to what's known as inspiration porn [2] a term strongly associated with disability advocacy, particularly championed by the late comedian and activist Stella Young. The concept gained cultural prominence around 2010 and has since been widely discussed, with Young's 2012 article, 'We’re Not Here for Your Inspiration,' serving as a cornerstone. Inspiration porn typically involves images of individuals with visible impairments engaging in physical activities, often accompanied by captions urging viewers to find inspiration in their accomplishments. While some may argue that such depictions offer positive representation, critical analysis reveals deeper issues. Stella Young and others have highlighted how inspiration porn perpetuates harmful ideologies regarding disability, primarily through objectification, devaluation, and individualization. These depictions often reduce individuals with impairments to mere objects of inspiration, overlooking their experiences and complexity as human beings. Moreover, by emphasizing individual achievement over systemic barriers, inspiration porn obscures the broader societal issues that contribute to disability discrimination. The phenomenon echoes broader themes in disability studies, such as the critique of the medical model and the tendency to otherize individuals with impairments. Additionally, scholars like Sharon Snyder and David Mitchell have explored how impairments are often used as narrative devices, limiting characters' potential and reinforcing stereotypes. Ultimately, while positive representation is important, it's crucial to recognize and address the problematic aspects of inspiration porn to foster more inclusive and nuanced portrayals of disability in society.[3]
Terms and definitions
[edit]Celebratory Technology: Technology that celebrates the positive and successful aspects of human behavior.[6]
Life Crafting: Evidence-based ways of finding purpose, an approach focusing on factors that support human health and well-being, instead of factors that cause disease.[7]
Salutogenesis: A measurement of the individual’s sense of coherence.[8]
Techno Saviorism: The promotion of technology as a panacea and not simply a technique of intervention.[9]
Ableism: Used to describe the negative treatment of disabled people, Its use in this case parallels the terms sexism, racism, ageism and other isms.[10]
Assistive Technology: Devices or systems designed to help perform certain tasks for individuals with disabilities.[11]
Accessible Technology: Devices or systems designed to be easily usable and understandable by a wide range of individuals. Each user is able to interact with the technology in ways that work best for them.[12]
Inclusive Technology: Devices or systems designed to accommodate the diverse needs of all users, regardless of their abilities or disabilities. It aims to provide equal access and usability for everyone, ensuring that no one is excluded from using the technology.[13]
Inspiration Porn: The concept of how society can unintentionally make people with disabilities feel marginalized, even when trying to celebrate them.[14]
Example: Japan Symposium
[edit]The Celebrating Neurodiversity Symposium, held at the Neurodiversity School in Tokyo (NSIT) on September 21, 2023, marked a significant milestone in Japan's engagement with the intersection of neurodiversity and technology. Hosted by the Center for Radical Transformation at Chiba Institute of Technology and the Connected Learning Alliance, the symposium convened a diverse array of researchers, technology experts, and neurodiverse individuals. Its primary objective was to facilitate the dissemination of cutting-edge research at the intersection of neurodiversity and technology.
With the goal of fostering a more inclusive society that embraces neurodiversity, Dr. LouAnne Boyd introduced the concept of Celebratory Technology to symposium attendees. Under her guidance, researchers and technology experts engaged in a design sprint aimed at conceptualizing Celebratory Technologies tailored to addressing the challenges faced by neurodiverse individuals. At the center of these challenges is the pervasive social stigma surrounding conditions such as autism, which impedes social integration.
The design sprint commenced with an immersive experience of Japanese culture and the neurodiverse perspective. Participants embarked on visits to temples, engaged in tea ceremonies, sampled traditional sweets, and participated in sensory experiences. These activities aimed to deepen attendees’ understanding of the lived experiences of neurodiverse individuals and to incorporate this experiential knowledge alongside insights gleaned from familial and collegial sources.
Central to the design sprint was the identification of key challenges and the formulation of design maps delineating various facets of neurodiverse experiences, encompassing sensory perceptions, interpersonal interactions, emotional responses, technological interfaces, and other pertinent dimensions. Attendees delineated interdependencies among these dimensions to ascertain their relative significance.
Subsequently, participants engaged in ideation exercises, developing use cases and refining initial design concepts to address identified challenges. The cumulation of this iterative process was the creation of paper prototypes aimed at soliciting user feedback and addressing specific research inquiries. These prototypes were subjected to rigorous testing and evaluation by neurodiverse individuals, families, and other stakeholders, thereby informing interactive design refinements.
Research to Date
[edit]The article "Conceptualizing Celebratory Technologies for Neurodiversity to Reduce Social Stigma" discusses the development of celebratory technologies aimed at promoting a positive understanding of neurodiversity and reducing the stigma associated with neurological differences such as autism[15]. It introduces a shift from traditional assistive and corrective technologies[16] to those that celebrate and affirm neurodivergent identities. Through examples like a profile picture alternative, the work advocates for technology that fosters understanding, acceptance, and appreciation of neurodivergent individuals, thereby aiming for social change rather than merely addressing individual deficits.
Within the article, the research discusses using a collage of positive personal interests in the form of a disco ball to allow individuals to introduce themselves from a broader lens rather than focusing on one single stereotype. Rather than the profile alternative being used only for users with disabilities, the research emphasizes using the Celebratory Technology for Neurodiversity for all users allowing individuals to be celebrated for their achievements and interests.
Compare/Contrast of Celebratory Technology to other forms (Assistive, Accessible, Inclusive)
[edit]Accessible:
One mainstream model that is similar to celebratory technology is accessible technology. Accessible technology designs focuses on developing tools with all users and ability levels in mind[17]. Different users require different accommodations so they can access technology tools and content. This approach requires developers to understand that not all users access information via a traditional monitor, keyboard, browser, and visuals [18]. In its essence, accessible technology is unique from celebratory technology because it changes the user environment to meet the needs of user impairments [3] By changing the user's environment, users will be able to experience technology without barriers they would normally without the accommodations. Celebratory technology differs from accessible technology because celebratory technology designs for disability without seeing it as a user exception [4].
Inclusive Technology:
Inclusive technology in term that is many times used synonymously with assistive and accessible technology. While there are many overlapping themes and similarities, the term inclusive can be specified in that it embraces diversity of all types, including groups that don't need the specific assistance of technology. While, assistive technology is mainly developed to assist people with their disabilities, inclusive technology is intended to serve all types of users, both disabled and non-disabled alike. It focuses on facilitating collaboration between groups with different abilities. Factors like location, situational disabilities, perspectives, and other factors impacting the ability of people are considered in the design [19]. Celebratory technology is aimed to address the public at large to reduce the stigma of labels associated with having a disability or relying on assistive and accessible technology. The main focus is on appreciating disabilities and neurodiversity by embracing all of humanity. By changing to focus from accommodation to celebration, it creates a more open and productive design space where inclusive technologies can be formed [2].
Impacts
[edit]Celebratory technology represents a paradigm shift in societal perspectives on disability and stigmatized identities, focusing on celebrating the positive aspects of living. Unlike the phenomenon of "inspiration porn," which patronizingly praises the ordinary or extraordinary acts of disabled individuals in a context that subtly pities them, celebratory technology seeks to affirm and elevate diverse identities. Inspiration porn often reduces disabled individuals to motivational figures for non-disabled observers, without acknowledging their full humanity.
Celebratory technology, in contrast, aims to foster communities centered around mutual interests and the positive attributes of individuals, rather than focusing on deficits. For the disabled community, this approach creates an alternative to traditional narratives that highlight limitations or struggles. By showcasing the diverse capabilities and accomplishments of disabled individuals through technologies that promote interaction, personalization, and a genuine appreciation of neurodivergent experiences, these technologies help to cultivate a more inclusive society.
These technologies empower individuals by tailoring solutions that acknowledge and cater to unique needs, improving everyday functions. This empowerment is essential in reducing stigma, as it shifts the focus from disabilities to capabilities, challenging traditional perceptions and societal barriers. The impact goes beyond individual users to influence a wider audience. Celebratory technology educates and informs the public by increasing visibility and normalizing diverse abilities in technology. This shift is vital not only for enhancing the social integration of individuals with disabilities but also for creating a society that values diversity in all its forms.
Future research
[edit]The future research in the field of Celebratory Technology aims to deepen the integration of celebratory technologies that not only address stigma but also foster inclusivity across diverse identities.[20] Initial efforts have focused on designing low-fidelity alternatives for feedback sessions that will later expand to include a broader range of design participants. This work is critical in understanding how such technologies can serve beyond initial interactions and possibly facilitate the formation of teams by aligning individuals based on compatible personality traits, including those identifying as neurodivergent. Furthermore, extending the research beyond autism to encompass a wider spectrum under the neurodivergent umbrella could provide significant insights[21]. By expanding upon current findings and considering the design implications of celebratory technology for neurodiversity as it exists today, future researchers can further elaborate on mechanisms that will reduce social stigma at large.
Ongoing and planned research includes a working design session of celebratory technology with neurodivergent scholars at the Special Interest Group on Computer–Human Interaction (SIGCHI) conference in May 2024, which will explore these dimensions further in the first wave of collaboration on the subject[22]. By building an increased awareness of neurodiverse communities, the goal of this session is to focus on design from a celebratory perspective and identify community-oriented challenges to expand the scope of future research. By producing knowledge and fostering the creation of empirically derived interactions designs for social change, the SIG hopes to drive programs with these designs which can be implemented by social media platforms and can inform policy to reduce stigma around neurodivergence. Additionally, the results of the design sprints and discussion at the session will be encouraged to be expanded upon and ultimately published through various avenues.
References
[edit]- ^ Grimes, Andrea; Harper, Richard (2008-04-06). "Celebratory technology: New directions for food research in HCI". Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. CHI '08. New York, NY, USA: Association for Computing Machinery. pp. 467–476. doi:10.1145/1357054.1357130. ISBN 978-1-60558-011-1.
- ^ a b c d e f Boyd, LouAnne (2023-10-22). "Conceptualizing Celebratory Technologies for Neurodiversity to Reduce Social Stigma". The 25th International ACM SIGACCESS Conference on Computers and Accessibility. ASSETS '23. New York, NY, USA: Association for Computing Machinery. pp. 1–4. doi:10.1145/3597638.3614478. ISBN 979-8-4007-0220-4.
- ^ a b Grue, Jan (2016-07-02). "The problem with inspiration porn: a tentative definition and a provisional critique". Disability & Society. 31 (6): 838–849. doi:10.1080/09687599.2016.1205473. hdl:10852/51058. ISSN 0968-7599.
- ^ Robertson, Scott M.; Ne'eman, Ari D. (2008-12-08). "Autistic Acceptance, the College Campus, and Technology: Growth of Neurodiversity in Society and Academia". Disability Studies Quarterly. 28 (4). doi:10.18061/dsq.v28i4.146. ISSN 2159-8371.
- ^ Rajarshi, Rit. "Inspiration porns may deny or invalidate the special needs and help the non-disabled people some benefit by inspiring oneself." Wikimedia Commons, 25 Dec. 2021, https://commons.wikimedia.org/wiki/File:Inspiration_Porn_1.png (CC BY-SA 4.0).
- ^ Grimes, Andrea; Harper, Richard (2008-04-06). "Celebratory technology: New directions for food research in HCI". Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. CHI '08. New York, NY, USA: Association for Computing Machinery. pp. 467–476. doi:10.1145/1357054.1357130. ISBN 978-1-60558-011-1.
- ^ Schippers, Michaéla C.; Ziegler, Niklas (2019). "Life Crafting as a Way to Find Purpose and Meaning in Life". Frontiers in Psychology. 10: 2778. doi:10.3389/fpsyg.2019.02778. ISSN 1664-1078. PMC 6923189. PMID 31920827.
- ^ Mittelmark, Maurice B.; Sagy, Shifra; Eriksson, Monica; Bauer, Georg F.; Pelikan, Jürgen M.; Lindström, Bengt; Espnes, Geir Arild, eds. (2017). The Handbook of Salutogenesis. Cham: Springer International Publishing. doi:10.1007/978-3-319-04600-6. ISBN 978-3-319-04599-3.
- ^ Abdelnour, Samer (2015). "The Cookstove–Rape Prevention Myth and the Limits of Techno-saviorism". In Hostettler, Silvia; Gadgil, Ashok; Hazboun, Eileen (eds.). Sustainable Access to Energy in the Global South. Cham: Springer International Publishing. pp. 205–215. doi:10.1007/978-3-319-20209-9_18. ISBN 978-3-319-20209-9.
- ^ Wolbring, Gregor (2008-06-01). "The Politics of Ableism". Development. 51 (2): 252–258. doi:10.1057/dev.2008.17. ISSN 1461-7072.
- ^ Danemayer, Jamie; Holloway, Cathy; Cho, Youngjun; Berthouze, Nadia; Singh, Aneesha; Bhot, William; Dixon, Ollie; Grobelnik, Marko; Shawe-Taylor, John (2023-09-01). "Seeking information about assistive technology: Exploring current practices, challenges, and the need for smarter systems". International Journal of Human-Computer Studies. 177: 103078. doi:10.1016/j.ijhcs.2023.103078. ISSN 1071-5819.
- ^ Thebault-Spieker, Jacob; Chancellor, Stevie; DeVito, Michael Ann; Salehi, Niloufar; Leavitt, Alex; Karger, David; Spiel, Katta (2021-10-23). "Do We Fix it or Burn it Down? Towards Practicable Critique at CSCW". Companion Publication of the 2021 Conference on Computer Supported Cooperative Work and Social Computing. ACM. pp. 234–237. doi:10.1145/3462204.3483281. ISBN 978-1-4503-8479-7.
- ^ Abascal, Julio; Azevedo, Luis (2007). "Fundamentals of Inclusive HCI Design". In Stephanidis, Constantine (ed.). Universal Acess in Human Computer Interaction. Coping with Diversity. Lecture Notes in Computer Science. Vol. 4554. Berlin, Heidelberg: Springer. pp. 3–9. doi:10.1007/978-3-540-73279-2_1. ISBN 978-3-540-73279-2.
- ^ LAZAR, AMANDA; BREWER, ROBIN N.; KACORRI, HERNISA; HONG, JONGGI; PUNZALAN, MARY NICOLE DUGAY; MAHATHIR, MAISARAH; VANDER HYDE, OLIVIA; ROSS, WARREN (2021). "How Content Authored by People with Dementia Affects Attitudes towards Dementia". Proceedings of the ACM on Human-computer Interaction. 5: 10.1145/3479542. doi:10.1145/3479542. ISSN 2573-0142. PMC 8855361. PMID 35187410.
- ^ Interactive Technologies and Autism, Second Edition. Synthesis Lectures on Assistive, Rehabilitative, and Health-Preserving Technologies. 2020. doi:10.1007/978-3-031-01604-2. ISBN 978-3-031-00476-6.
- ^ Spiel, Katta; Frauenberger, Christopher; Keyes, Os; Fitzpatrick, Geraldine (2019-11-02). "Agency of Autistic Children in Technology Research—A Critical Literature Review". ACM Transactions on Computer-Human Interaction. 26 (6): 38:1–38:40. doi:10.1145/3344919. ISSN 1073-0516.
- ^ "Accessible & Assistive Tech | Students | SDRC | UCR". sdrc.ucr.edu. Retrieved 2024-05-02.
- ^ "What is accessible technology?". UW–Madison Information Technology. Retrieved 2024-05-02.
- ^ Noel, Michelle (2024-01-22). "Inclusive Vs Accessible. What Is The Difference?". Studio Noel. Retrieved 2024-05-02.
- ^ Gillespie-Lynch, Kristen; Daou, Nidal; Obeid, Rita; Reardon, Siobhan; Khan, Spogmay; Goldknopf, Emily J. (2021-02-01). "What Contributes to Stigma Towards Autistic University Students and Students with Other Diagnoses?". Journal of Autism and Developmental Disorders. 51 (2): 459–475. doi:10.1007/s10803-020-04556-7. ISSN 1573-3432. PMC 7273383. PMID 32504342.
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- ^ Shelton, Summer S.; Waddell, T. Franklin (2021-07-03). "Does 'Inspiration Porn' Inspire? How Disability and Challenge Impact Attitudinal Evaluations of Advertising". Journal of Current Issues & Research in Advertising. 42 (3): 258–276. doi:10.1080/10641734.2020.1808125. ISSN 1064-1734.