This year’s Salon “Consent and Its Discontents” hopes to expand visions of consent praxis beyond the narrow scope that structures conventional digital activities, such as terms of service, university ethics protocols, and developer-led community consultations. The Salon is connected to a 2019-20 Mcluhan Centre Working Group on the same theme, which will be bringing together faculty, graduate students, and community researchers to ask: What practices of permission and processual consent have communities already built that can be brought to bear on digital practices? How can we learn across different protocols and efforts to create communities of meaningful and ongoing consent?
Capture & Consent: Images and Stories in Digital Research Cultures
When :: Nov. 8, 3-5pm
Where :: McLuhan Centre for Culture and Technology | 39 Queen’s Park Crescent East | Toronto, ON M5S 2C3
Speakers :: Max Liboiron, Zack Marshall, Simona Ramkisson, Jennifer Wemigwans, T.L. Cowan, and Jasmine Rault.
Conversation :: What are the digital research practices and protocols emerging from Indigenous, Black, anti-racist trans- feminist and queer science, technology, health, media and cultural studies? The conditions of compelled consent by which the cultural works of minoritized people are ‘captured’ online (through Google, Facebook, Twitter, Amazon, etc.) seem to complement long-standing colonial academic research conventions of shifty/dodgy consent in capturing minoritized people’s images, stories, cultural works and knowledges. In such a context, what kinds of strategies, attention and care-fullness do we need to cultivate as custodians of images and stories in our research, and in digital (research) culture broadly? How are researchers in these fields redefining practices and processes of consent in a digital cultural context?
Max Liboiron is a feminist environmental scientist, science and technology studies (STS) scholar, and activist. As an Assistant Professor in Geography at Memorial University, Liboiron directs Civic Laboratory for Environmental Action Research (CLEAR), a feminist, anticolonial laboratory that specializes in grassroots environmental monitoring of marine plastic pollution. An in-progress manuscript, Pollution is Colonialism, uses CLEAR and plastic pollution as case studies articulate pollution as a form of colonialism.
Zack Marshall is an Assistant Professor in the School of Social Work at McGill University. Building on a history of community work in the areas of HIV, harm reduction, and mental health, Zack’s research explores interdisciplinary connections between public engagement, knowledge production, and research ethics in queer and trans communities using digital methods. Current projects that address these themes are: Knowsy, An accessible online portal for LGBTQ2S+ knowledge synthesis including systematic reviews and scoping studies, and Shift, a project exploring labour practices in participatory research across the social sciences, natural sciences, and health.
Simona Ramkisson is the Manager of Community Development, at the Wikimedia Foundation (organization that supports Wikipedia and the other Wikimedia free knowledge projects) where she leads the foundation’s community development efforts to support emerging communities and community leaders. Prior to joining the Wikimedia Foundation, she led the Mozilla Foundation’s city-based learning project, Hive Toronto. In her role as director, she supported the development of unique education opportunities with a focus on web and digital literacy and for-community, by-community cyber-safety curriculum building. She currently sits on the Right to Play Youth 2 Youth program advisory board and the YWCA’s Project Shift ICTC roundtable. Simona hold as Hons.BA in Criminology from York University with a focus on restorative justice practice. As a graduate of the Rockwood Leadership Institute’s Transformative Facilitation and the Art of Leadership program, she actively works to bring a social justice scope to the world.
Dr. Jennifer Wemigwans is a member of the Wikwemikong First Nation, located on Manitoulin Island. She is a new media producer, writer and scholar specializing in the convergence between education, Indigenous knowledge and new media technologies. Her book A Digital Bundle: Protecting and Promoting Indigenous Knowledge Online (2018) explores the prospects of education and digital projects in a networked world. Dr. Wemigwans takes pride in working to invert the conventional use of media by revealing the potential for Indigenous cultural expression and Indigenous knowledge through new technologies, education and the arts.
Jas Rault and TL Cowan are co-directors of the Trans Feminist Queer Digital Praxis Workshop (TFQ DPW), including the Digital Research Ethics Collaboratory (DREC, drecollab.org) and the Cabaret Commons (cabaretcommons.org).
Public Lecture :: Exceptional Citizenship, Bounded Justice: Sickle Cell Disease in Brazil
Speaker :: Dr. Melissa Creary (University of Michigan School of Public Health)
When :: Thursday, October 24, 4-6pm
Where :: Jackman Humanities Building, University of Toronto (170 St. George Street), Room 318
Abstract :: Based on empirical data collected on the ways in which science is co-produced for sickle cell disease (SCD) in Brazil, this project explores the ethical calculus of how scientific knowledge is legitimized. The static definition of SCD is reconfigured by the state and its Afro-Brazilian citizens in the co-production of health policy that is based on both biological and cultural distinction. These distinctions were attached to “blackness” despite a patient pool that spans the phenotypic spectrum. This reconfiguration occurred, in part, via the 1988 reformed federal constitution, which built in language that mandated that SCD communities had to be a part of the development, maintenance, and evaluation of health policy in conjunction with Ministry of Health officials. Despite this constitutional mandate for inclusion in policy, the societal and cultural influences to genomic discourse provided by SCD activists are discredited by scientists. There is a failure to recognize the impact of culture and history on science, in the same way that the State and others do so for policy.
Bounded justice is a biopolitical and bioethical concept that frames how programs and policies focused on justice-based notions of inclusion, do so without recognizing how the “benefiting” constituents have already embodied social exclusion. It is a framework which addresses the entanglement of justice, inclusion, and citizenship for vulnerable populations. The justice-based health policies are unable to address the underlying mechanisms that generated initial inequalities. Bounded justice challenges the idea that health equity is an achievable goal, given that all other factors will never be equal and requires that the design of policies and programs are done so with that limit at the forefront of the process. This concept is created in concert with both well established and novel schemas like structural violence, ecological frameworks of health, intersectionality, embodiment, and biocultural citizenship (Creary, 2017). As I define it, bounded justice is an attempt to distribute health rights without disturbing the underlying mechanisms that generated initial inequalities. Its performance hinges on the historico-geographical context in which it is situated and can permeate any number of medical, social, and ethical realms.
Speaker Bio :: Melissa Creary, PhD, is an Assistant Professor in the Department of Health Management and Policy in the School of Public Health. She received her PhD in Interdisciplinary Studies (focusing on Health, History, and Culture) at the Graduate Institute for the Liberal Arts (ILA) and Masters in Public Health at Emory University. She served as a health scientist at the Centers for Disease Control and Prevention in the Division of Blood Disorders for nine years, where she helped create the first national program and data collection system for sickle cell disease (SCD) at the agency. Dr. Creary’s research and teaching interests broadly include how science, culture, and policy intersect. Through this lens and using historical and ethnographic methods, she investigates how national policy for SCD is influenced by race and other notions of belonging. Her research also interrogates how inclusion and knowledge production are at odds with structural barriers. In her most recent project, she analyzes how equity-based scientific and public health policies are incongruent to the very justice they are trying to produce. She has been published in Social Science and Medicine, Genetics in Medicine, The American Journal of Bioethics, and The Huffington Post.
Presented by :: The Latin American Racial Technologies Group and the Technoscience Research Unit