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- Convenor:
-
Daniel Gardner
(Chapman University)
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- Format:
- Combined Format Open Panel
Short Abstract:
This panel will describe, demonstrate, suggest, and workshop methods of approaching research and design that share the authority over knowledge or outcomes with the participants or communities involved in their generation. Workshop element will incorporate the experience and priorities of attendees.
Long Abstract:
The academic industrial complex thrives and encourages authority through inhabiting the position of author. Publish or perish, we hear, and make sure you are “first!” Even in this abstract, I strive to perform some semblance of authority to suggest credibility.
Author and authority fittingly share a Latin root referring to mastery and leadership. STS has a lengthy history of reflecting on our personal positionality, privileges, and situatedness related to the phenomena we observe and generate knowledge about. Our community is well-versed in considering how our own experiences and perspectives shape the kind of analysis we can produce. As our interdisciplinary pursuits adopt increasingly sensitive and reflexive approaches, there is still need to grapple with the inherently privileged and authoritative positionality of the basic mode of scholarship in the form of authorship. When is it appropriate to describe ourselves as the author(ity) of the lives and experiences of others? How can integrating the diverse perspectives of those with lived expertise related to whatever phenomena evolve our scholarship?
There is a wealth of scholarship (especially in design research) on “participatory” methods or that suggests alternative means of disseminating knowledge. This panel invites, and celebrates, submissions that attempt to move beyond participation or cursory collaboration in their approach, to create analysis, designs, or knowledge with or within communities. Submissions should demonstrate or suggest methods of sharing authority over knowledge generation, especially to amplify historically under- or mis-represented communities, or around other critical topical areas. The panel will include more traditional talks and workshop activities.
Submissions should:
•Describe traditional scholarly looking work, where participants or community members shared authorship or were otherwise given an active stake in how data was analyzed or presented.
•Present or suggest alternative, creative, artistic, or performative modes of disseminating knowledge that stem from and prioritize community-driven values or ontologies.
Accepted contributions:
Session 1Dana Hradcova (Charles University Faculty of Humanities) Michal Synek
Short abstract:
Life stories for human rights are lived and told by people with disabilities who have spent their lives in total institutions. By their retelling and by sharing uncertainties about how to re-tell them we want to broaden the space for shared memories and response-abilities.
Long abstract:
Life stories for human rights (www.zivotnipribehy.com) are stories lived, told and spread by and with people with disabilities, who have spent big part of their lives in total institutions. Among the rights which are denied to people using the services of the total institutions, the right to own one’s life story and to share it with others plays an important role. Our project offers people with disabilities an opportunity to form a research group together with academics, students, journalists, musicians and artists and to introduce their experiences and standpoints into the expert and public discourses. The outputs of the joint research will be utilised for creating a monograph and academic articles, as well as academic courses and a a lifelong learning course for social workers. Readers and listeners of accessible materials about human rights issues – of the graphic novel, the podcasts and the web page – will enjoy the opportunity to read, hear and see life stories which have never before influenced the public debate. By their retelling, and by sharing uncertainties about how to re-tell them best, we want to broaden the space of shared memories, response-abilities and speculations. Together, we will create discursive and political spaces favourable for exploring better versions of cohabitation, as well as point to concrete ways of breaking the silence engulfing lives of people with disabilities.
Jasmine McNealy (University of Florida) Idalis Villanueva Alarcón (University of Florida)
Short abstract:
If the goals of PAR include broadening participation to better understand and reflect the concerns of participants, the sources of understanding should more adequately demonstrate the complexity and possibilities of meaningful, democratic, participation.
Long abstract:
The objective of participatory action research (PAR) is social change through actively engaging the expertise of participants. In general, PAR is seen as a qualitative methodology, although those who use PAR as a frame may use quantitative methods, like surveys, in combination with interviewing, observation, etc. Yet, if the goals of PAR include broadening participation to better understand and reflect the concerns of participants, the sources of understanding should more adequately demonstrate the complexity and possibilities of meaningful, democratic, participation.
Therefore, the goals of this research are to understand how broadening the sources of data, and therefore participation, allow for deeper, richer and more meaningful understanding, leading to social change. This presentation chronicles how this extended PAR methodology was used to advance a large project on understanding the needs of Black engineering doctoral students in the United States.
This presentation examines how the research team engaged in PAR, hosting several meetings and other communications with graduate students to obtain their perspectives, background, and behaviors. In collaboration with these students, the data from the meetings were synthesized to assist with the development of interventions like curriculum and policy. Participants were actively encouraged to use commenting, voice notes, emoji and numerical scales to participate in review, revision, and re/synthesis and offer suggestions. These responses were integrated into the traditional data and analyzed to better frame the products and programs for student success.
Olivia-Autumn Rennie (University of Toronto) Denielle Elliott (York University)
Short abstract:
Traditional data output in healthcare often overlooks nuances of patient experience, particularly in brain trauma and injury. Alternate methods of visualizing health data are needed to capture patient experiences which may not be adequately conveyed through biomedical technologies.
Long abstract:
Collaboration between art and science consistently addresses various processes that impact people’s lives. These interactions and procedures rely on generating, presenting, and disseminating data. The concept of “visualization” encompasses diverse purposes across different fields of knowledge (e.g. descriptive, aesthetic, explanatory, persuasive), while also facilitating connections among users from diverse backgrounds (Hegarty 2011; Polman and Gebre 2015).
The analytical framework provided by Science and Technology Studies (STS) highlights that art is not merely secondary to science but rather compliments it. STS scholarship has delved into the interplay between experimental cultures of both art and science, examining how artists and scientists engage in hands-on practices and immersive experiences within their respective domains (Schatzki and Knorr Cetina 2000). Both art and science engage in the perception, interpretation, and construction of realities. In the context of health data, which is intimately tied to individual patients, it becomes crucial to explore novel approaches to understand human experiences that conventional medical technologies might not always capture or explain.
Here, novel methods of visualizing data are examined, including how art-based approaches provide patients, healthcare providers, and researchers with a means to gain deeper insights into the realities of brain trauma and injury. This paper highlights the potency of data visualization not only in revealing the unseen, but also fostering new connections - both cognitive and emotional - among data, patients, and medical research communities. Through innovative techniques, patients can actively contribute to understanding their illness experience, assuming greater control over the creation, visualization, and circulation of data.
Gemma Lucy Smart (University of Sydney)
Short abstract:
Re;Minding Histories at the University of Sydney archives, witnesses, and interprets the history of community mental health and consumer/survivor/ex-patient movement in Australia. It involves collaboration between lived experience academic researchers and conventional academic researchers.
Long abstract:
In Australia during the 1960s, following processes of deinstitutionalisation,which saw the number of individuals confined to mental hospitals reduce greatly, a variety of forms of community mental health services emerged. The focus of the Re;Minding Histories group at the University of Sydney is in archiving, witnessing interpreting, and understanding the rich history of deinstitutionalisation, social psychiatry, community mental health, and consumer/survivor/ex-patient movement in Australia during this time of change. Our research involves collaboration between lived experience academic researchers (peer researchers) and conventional academic researchers, with research participants that are highly skilled, resourced, and committed to social justice.
Through our work we aim to challenge the academic orthodoxy that understands knowledge and history as objective, neutral, and ‘set’. Instead, we resist the epistemic injustice this represents by engaging with material from a dialogical, narrative, and emancipatory position grounded in the frameworks of 1. Co-production, 2. Open Dialogue 3. Critical Oral History and 4. Witnessing for Social Action. In this paper I will describe how we developed a democratic activist community for our research project and how we achieved embodied scholarship across digital and physical spaces through a pandemic landscape and beyond.