This is a WIP documentation of my Master’s thesis research on enabling politically stigmatised populations that currently have unequal access to healthcare. I am conducting my research through a case study on ‘A Women’s History of HIV in America.’ My focus is on the participatory development of digital tools that facilitate the remote collaboration for these women to self-publish their history. (As one might suspect from reading any further, my thoughts on the matter are likely to be scattered at the moment.)
1. How might invisible populations curate their own public history?
1.1 How can design enable invisible populations to visualise and strategically disseminate their voices?
This thesis is directed toward evolving and informing the design and production of a groupware tool for collaborative curation of community-built archives. Groupware is defined here as software enabling real-time collaboration. The digital tool is being designed to facilitate participatory design through remote collaboration. Community participants and interdisciplinary researchers in multiple locations will use this groupware tool to remotely and collaboratively design venue-specific installations from a community-built archive. Each installation of the archive can be designed specifically to the contextual, historical, and local conditions of the venue itself, as determined by the community participants. The collaborative efficacy of user-centered design for the production of groupware is cast in relation to participatory methods (and mindsets) using the case study of History Moves, a research collaborative at the intersection of public history and participatory design. As the History Moves team prepares a nationally touring exhibition of an oral history project called “A Women’s History of HIV in America,” the design of custom — but extensible — groupware for collaborative curation extends the participatory scope of the project. The voices of the over 40 participating women — from disparate social geographies of Chicago, Brooklyn, and North Carolina — are represented at multiple touchpoints in the process, through the sharing of their narratives, participation in the construction of an archive of their materials, and now the design of a collaborative curation tool. The collaborative curation groupware expands the participants’ agency to self-represent through curating unique exhibitions at distinct venues. This approach to the decolonization of design aims to expand the scope of the project’s broader participatory model and enact advocacy through local programming that directly involves the participating women.
Keywords: Self-publishing• Participatory design • Emancipatory Research• Remote collaboration
1. What is an invisiblized population?
Women, the non-Caucasian, the disabled, the non-heterosexual and the non-English speaking have all been excluded from knowledge production at some time and all of these reasons for exclusion can become lenses for emancipatory research. (Noel, 2016) These populations share commonalities when accessing healthcare including communication barriers, difficulties accessing past medical records and the complexity of health needs that confront the practitioner providing health care. These issues and additional systemic barriers that prevent the delivery of optimal health care to such groups. (Brolan, Ware et al 2011)
1.1 Health outcomes of invisibilization
Economic forces, policies that shape our criminal justice system, and available housing all shape population health. And yet they seldom feature in the public conversation about health, which is dominated by medical approaches and cures. (Galea, Vaughan, 2018) Economic policies, the criminal justice system, and housing are all — however invisible — drivers of population health. Efforts to improve these are essential on a foundational level as medicine is on the molecular mechanisms of disease. The current policies and distribution of resources are focussed so much more on medical approaches and cures than in the causes of poor health suggests that we are not doing as well as we should be at making all the causes of health visible.
Another approach widely adopted in feminism and disability studies would be to tackle the more foundational drivers of population health, which would focus on ‘the contributions of low education, poverty, and spatial racial residential segregation as the causes of health and disease’. (Galea, Tracy, Hoggatt, DiMaggio, 2011)
2. Emancipatory Research
Emancipatory research is a research perspective of producing knowledge that can be of benefit to disadvantaged people. It is an umbrella term that can include many streams of critical theory based research such as feminist, disability, race and gender theory. (Noel, 2016) One of the key assumptions in emancipatory research is that there are multiple realities, and that research is not only created by the ‘dominant or elite researcher’.(Groat and Wang 2001) Given the development of branches of design research such as inclusive design, participatory design and design for social innovation, where the designer interacts with and designs with and for people who may be marginalized for reasons of race, gender, sexual orientation, disability, economic background etc., an early exposure to emancipatory research is valuable as a design researcher to recognise the impact of one’s own privilege on their practice and develop research interventions that are sensitive to this.
Mertens describes what some authors call emancipatory research as transformative research, and says that ‘emancipatory research actually came from the disability community, and was born out of the motto ‘nothing about us, without us’, a political action that aimed to move the control of the research into the hands of the community being researched. (Mertens 2015). This theory is essential to my study as it elicits a transformative correlation between emancipation to curate and political visibility of the participants.
2.1 Designing for or with the subject?
The participatory design model employed to develop History Moves thus far, personifies the intended mindful representation in that it stresses the participation of community participants — in this case, American women living with HIV — as empowered decision-makers throughout the process of ideation to creation. Unlike co-design, that gathers user insight which may or may not translate to viable design outcomes (Trischler, Pervan, Kelly, & Scott, 2017), the participatory model seeks the user’s inputs at multiple sequential phases, which are highly iterative and collaborative in nature. It views the users as the experts — the ones with the most knowledge about what they do and what they need — and the designers as technical consultants. (Namioka, Schuler, 1993).
This thesis focusses its interventions in between the ‘centre’ and ‘periphery’. These are terms were first used by Brazilian based designer and researcher, Gui Bonsiepe and American based designer and educator Victor Papanek, where ‘centre’ refers to the ‘First World’ and ‘the periphery’ is a synonym for ‘developing countries’ (Margolin 2007).
2.2 Exercise of power
The exercise of power, or the organization of power through the built environment, by enhancing or increasing the visibility, or the illusion of visibility, of certain groups was termed panopticism. (Foucault, 1975) Yet, power is also exercised in situations where the goal is to limit, rather than enhance, visibility. Archaeologist Emily Dale coined the counter-movement based not on the all-seeing eye of the panopticist, but on the invisibility of populations as Anopticism, or not-seeing. At its heart, anopticism is the ability or power to make individuals or groups invisible. (Dale, 2019)
3. Designing public history
3.1 The Exhibition Design process
Exhibitions are thematic public displays of information, curated to visually and tangibly represent a notable point of view. Historical archives, contemporary concepts, and future speculations are thus publicly presented to transcend their moment while also producing new sites for critical discourse. Exhibition design and associated programming comprise an interdisciplinary process, which presents challenges of coordination and pre-requisites the capacity to co-design. The diversity of skills and their relevance to individual exhibitions makes exhibition designers accustomed to working in project-oriented multi-disciplinary teams (Hammond & Waite, 2010). The following section illustrates some of these challenges through an ongoing case study, originally piloted in 2014, and now working toward a much broader implementation in 2020.
Treichler states that in order to form an official definition that will govern policies, regulations and rules must ‘rest upon the deeply entrenched cultural narratives’ of those living positive. What AIDS signifies must be democratically determined. (Treichler, 1987)
3.2 Groupware : remote collaboration
Currently, the focus of History Moves is on the design, production, and programming for a nationally touring exhibition to combine narratives of all participating women from Chicago, Brooklyn, and North Carolina. New tools and workflows are necessary to achieve the project’s aim at expanding its participatory model for not only collecting, but also interpreting, publicly presenting, and generating active and local discourse on relevant contemporary social topics.
To achieve this goal — and fill a gap in the landscape of easily accessible tools for community-engaged research — the team is now designing and producing a “collaborative curation” tool, designed to facilitate participatory processes that will allow each venue the exhibition visits to be uniquely curated and designed with direct input from the community participants (in this case, participating women from the respective US geographies). “Groupware” describes software, tools, process, and/or programs that enable real-time synchronous collaboration (Podgorny, Walczak, Warner, & Fox, 1998). In this case, the groupware tool is being designed to facilitate participatory design and curation through remote collaboration between researchers and participants.
3.3 Curation as action
Curation in the contemporary context refers most often to the preservation, organization, and interpretation activities of a museum, a gallery, or other types of collections for the public to see. It is the act of ‘selecting, organizing, and presenting (online content, merchandise, information, etc.), typically using professional or expert knowledge (Oxford Dictionary definition). However, the word “curate” originated from the Latin word ‘cura’ which translates as ‘care, concern, attention, management’. This fundamental understanding of the term establishes the relationship between the curator and the exhibit itself, to be grounded in care and mindful representation.