Out of Silence, Away from Death: Social Innovation Practice

Introduction To Social Innovation Methodology

When I started in the SIS program, the concept of “social innovation” in relation to Our Viral Lives felt like an unnecessary abstraction. I remember at one point even considering switching out of the SIS concentration because I felt my work didn’t “fit in” to the mold of a social innovation project. But the more I started to concretely plan out Fall 20015—both in regards to launching new programming and also solidifying travel plans in South Africa— I realized how clearly I was doing something that was in fact innovative and was focused on making a social, political and historical impact on discourse around HIV/AIDS for LGBTQ-identified people.

To make sense of the potential social impact and innovation of Our Viral Lives, it’s necessary to consider three different elements of the project: content, design, and method. They are all interrelated but they serve to highlight unique components of social innovation discourse.

Content refers to the overarching subject matter of Our Viral Lives. It’s explicitly about sexuality, sexual health, and HIV/AIDS for an under 35 LGBTQ audience. These communities, particularly in low income or non-white neighborhoods, suffer disproportionate effects of HIV and have less time in both narrative and political campaigns devoted to them. At the same time, content refers to broader capacity building. In this sense, Our Viral Lives is globally focused, open-ended in the sense that content and histories can be subject to revision, takes a critical eye but also is relatable and empowering in multiple ways.

Design refers to the overall aesthetic and structural elements that make Our Viral Lives possible. Being an online/digital archive, using specific branding and an otherwise clean aesthetic, etc. are conscious choices designed to promote accessibility and collaboration in a way that decenters the way archives are traditionally produced. Design also refers to the fact that through collaborative efforts, the project produces what I call a “network of sexual lives,” meaning that its designed to use sex to build new relationships in a variety of contexts.

Other consciousness design choices include my own narrative being present throughout because people relate more easily to some tangible narrative/action. By showing how opening up about sexuality and HIV has positively impacted by life, I can encourage and empower others to participate without prescribing any specific course of action.

Method refers to specific campaigns as part of Our Viral Live and broader strategies to promote the project, drive engagement, and better develop future campaigns to come. I just launched a mapping campaign called “Sex Without Boundaries” during residency to visualize people living with HIV/AIDS, people taking PrEP for HIV prevention, and to honor those who died from AIDS-related illnesses. I’ve also launched my own autoethnographic journal called “Snapshots of Desire.” In the meantime, I’m planning for my South Africa trip, and also hope to launch a photography campaign at some point over the next 6 months.

Finally, in regards to capacity building, I recognize the necessity of being “in person” to build awareness around Our Viral Lives and also to better understand the needs within communities. This translates to working with community organizations in a volunteer capacity, documenting existing events, writing for news publications, hosting arts-related events, and presenting on my research findings from South Africa in January.

These realizations were inspired, in part, by the reading of The International Handbook On Social Innovation (2013). This text is one of the foundations of the social innovation and is divided into various sections that explore turning theory into practice, that highlight instructive case studies of socially innovation projects, and explore what’s yet to come in social innovation research. Though many projects are more oriented to public policy changes, others are in line with the narrative-based project I’m conducting.

Social innovation, as defined in the text, is “finding acceptable progressive solutions for a whole range of problems of exclusion, deprivation, alienation, lack of well being, and also to those actions that contribute positively to significant human progress and development” (16). Further, social innovation is “about inclusion and about countering or overcoming conservative forces that are eager to strengthen ore preserve social exclusion situations” (17). In the context of Our Viral Lives, stigmatizing HIV/AIDS, queer sexuality, and open discussions and public displays of pleasure are what the project is trying to counteract.

It’s important to note, as the authors of this text state, that social innovation is “always concern[ed] about the human condition” (17). As such, everyday experiences are stressed. Photographs, personal written narratives, and other ephemera constitute the bulk of the archive, making up the content section that was explored above. The obsession is not with documenting “truth” or “reality” but with documenting what can humanize and empower individual actors and community organizations to improve the sexual lives of LGBTQ people.

In regards to the sustainability aspect of social innovation and sustainability, the authors also make a strong case for an understanding of sustainability removed from the typical, strict ecological context in which it is typically understood. They comment that sustainable development “refers to the qualitative improvement of a system through the gradual unfolding of its potentialities” (55). At the same time social sustainability, a relatively new concept, explicitly stresses the “role of the social in the collective resolution of tensions related to the interconnectedness between different ingredients that compose sustainable development as a societal goal (55-56).

Though I hadn’t realized it before, Our Viral Lives is structured on a model of social innovation because its design and method stresses qualitative narratives and historical preservation as a means of better understanding the successes and failures of prior HIV/AIDS activism and community health building while offering, in the context of existing social relationships, a new possibility for activism and community building that can resist the economic and non-profit failures that have plagued the moment. While it is not itself a prescriptive model of social sustainability, it is designed to build this concept gradually.

In the process of reading this text, I also learned of a concept called cultural regeneration, which I wasn’t familiar with before. The authors describe this as a process “in which culture is a structural part of strategic planning, fully integrated in the improvement of the environmental, social and economic spheres” (71). This process is important because Our Viral Lives is about reconstructing legacies of grief to pave way for a movement around HIV/AIDS in which the construction of desire and pleasure is an essential cultural aspect. Cultural regeneration is equally as important as any specific political, economic, or social goal. They will sustain HIV/AIDS activism in the future.

Finally, I wanted to discuss what they call a partnership-based research model. As they comment, “most mainstream-oriented methodologies view social-scientific research and analysis occurring in either one of two constituent areas of activity – fundamental research or applied research” (310). This hierarchy removes the power of applied research, and otherwise privileges theory over action when the two are integrated. This partnership-based research model stresses “action research” and “partnership-based collaboration” instead (310).

Action research is structured into the method section of my project. Since I stress interacting with community-based organizations, holding events, and writing to large audiences, I stress how “a researcher collaborates with practitioners in the effort to change a situation and resolve a problem experienced in a milieu, community or organization, and to improve understanding of the phenomena in question” (311). My work with organizations like Visual AIDS (in NYC), Triangle Project and Treatment Action Campaign (in South Africa), and with other HIV/AIDS activists build awareness for HIV/AIDS and sexual health development in collaborative ways.

In the partnership-based collaboration model, there is a similar kind of shared investment in an issue, but focus shifts to “building capacities of organizations through sharing and better use of resources, qualifications and knowledge” (311). It will be difficult to achieve this latter point because funding for HIV/AIDS is currently so limited and competition for resources often trumps deep collaboration, but I feel by using narrative-based approaches to understanding the HIV/AIDS crisis, I can stress how global challenges are better solved in collaborative ways, where individual energy is shared.


Collaborative Design in Social Innovation

Now I want to shift the focus specifically to design and to Design, When Everybody Designs: An Introduction to Design for Social Innovation (2015). In this text, Ezio Manzini offers a model of co-design, whereby individuals who are not “experts” in the design field can help build collaborative projects with expert designers, with experience in the field or formal training, can enhance these community-based projects by making them more efficient, more probable, and more likely to have larger social impacts.

Design is important for every project because design refers to what Manzini describes as “concrete form in the work of the service that meet human needs, a brand of making and planning disciplines” (viii). For Our Viral Lives, design has been particularly important in regards to conceptualizing an online/digital archive, which touches on graphic design, interaction design, information design, and process design fields. From a conceptual standpoint, I understand the failure of current libraries and archives to provide sufficient access to HIV/AIDS arts, cultural and political histories. The visual layout and ways that people could collaboratively interact with this archive came along with formulating this unusual type of archive.

Our Viral Lives is designed with the basic principle in mind that “social innovation appears important because, as anticipated, it indicates viable ways of dealing with [social problems]: solutions that break the traditional economic models and propose new ones, operating on the basis of multiplicity of actors’ motivations and expectations” (12). This tied to the point in Alana Kumbier’s Ephemeral Material: Queering the Archive (2015) where she says that archives are “activated through engagement” (19). Traditional archives are proposed as neutral, disengaged spaces, tied to money and resources that shape an understanding of history as something that is static. On the basic level of design innovation, the archive is a living constituency of actors who, through their physical presence, create a shared archive that whereby they are empowered to share their own sexual histories and propose new solutions to stop the spread of HIV/AIDS.

Design, Manzini is careful to point out, can also involve what he calls “expert design” (37). These individuals are trained in the field, and have experience and specific knowledge that can help to enhance design from my perspective, what he refers to as “diffuse design” (37). Diffuse and expert design is not oppositional. Instead, the processes can be seen on a quadrant scale where grassroots organizations, cultural activists, design and technology agencies, and design and communication agencies co-mingle (40-43).

I am a cultural activist, but will be paring with grassroots organizations to understand their everyday challenges in partnerships with the multitude of organizations in the introduction section. I will also seek friends who are communications and technical experts when necessary to help enhance the reach of my project. A friend already helped me to design the main logo and basic branding for Our Viral Lives that I would not have been able to do on my own. Semi-regular focus groups could be another way to leverage the power of this co-design process, whereby experts offer their guidance in way that differs, somehow, from a traditional advisory board structure.

In “Collaborative Design” and “Collaborative Encounters” (77-118), Manzini explores how digital technologies can play a role in these exchanges. For instance, he uses social networks to describe how to build “hybrid space,” where digital and physical realities interact to create a common interest among individuals who are geographically scattered (81). Because HIV/AIDS is a global health crisis (a pandemic, really) no other existing conventional design model can leverage the power of individual stories and histories better than an archive disseminated through social media tools.

When considering design as an ongoing process, it is also important to understand that collaborative encounters can take up many forms based on “social tie strength” and “relational intensity” (108). The first term refers to social groups that all participants share whereas the second term refers to the types of relationships that these individuals have (108). For Our Viral Lives, social tie strength is relatively weak. It is unified in the sense that it is primarily and LGBTQ archive for an under 35 crowd, but apart from that people can live in diverse geographic areas across racial and economic lines. On the other hand, there is a strong relational intensity because the project is designed to promote open ended and not prescriptive, formalized actions.

It’s important to end this section by stressing the fact that the design process is always on going. Simply because I have a highly informal but strongly relation global network of individuals committed to preserving records related to HIV/AIDS and sexuality does not mean this will always be the case. In my own understanding, design is queer, meaning that as knowledge accrues in the archive, its self-definition changes, from my input, from the input from others, and even just the way that knowledge relates to other forms of knowledge, which shifts how the archive can be used.


“I” Lead: An Authoethnographic Foundation

In this last section, I want to explain one aspect of social innovation that has not yet been discussed but is central to the success of the project: autoethnography. Why does writing about my own experiences matter so much? In The International Handbook on Social Innovations, the authors have an interesting section on applying the work of philosophers Gilles Deleuze and Felix Guattari. As the authors state, “‘Problems’ cannot be solved once and for all, but are provisionally reformulated, as issues are viewed in different ways or actions taken have unanticipated consequences or side effects” (173).

An autoethnographic log enables a more precise record of this process whereby I consider the problems related to sexual health and HIV/AIDS in an enacted way. The records I intend to produce can show not only the ways in which I navigate sexual spaces but how, in navigating these spaces my actions have consequences, personally and as part of a larger community of queer men who seek each other out for sex and companionship.

Deleuze and Guattari also emphasize a “‘cartography’ of change” which brings metaphors of mapping and diagramming into the forefront of understanding how social change can happen (173). Specifically, this cartography has four components: generative, transformational, diagrammatic, and machinic.

A generative component is a “tracing of stories,” which is most related to the Snapshots of Desire blog I started (173). In this, short entries trace off-the-cuff responses to history, current sexual encounters, our medical system and other related topics. A transformational component is also included in this log because I appropriately envision ways I want my sexuality to shift, or improvements I think can be made in the way we address histories of sexuality through my own experiences. These autoethnographic stories can then be used in both diagrammatic and machinic cartographies to demonstrate, to the first point, the relational forces that impact sexual decision making, and, to the last point, potentially concrete ways to break down silence and stigma around HIV/AIDS. These observations can take the form of a thesis, book project, or other large-scale mixed media analysis.

The challenge with Our Viral Lives, because it is so geographically diverse and encompasses so many abstract issues, is to inspire people to make their struggles concrete. Stories have the capacity to render a host of nebulous forces into something tangible. As Francesca Polletta says in It Was Like a Fever: Storytelling in Protest and Politics (2006), “Stories of personal struggles can make real the consequences of government actions that are too often conceived abstractly. They can also counter the stereotypes that underpin supposedly neutral policies” (86).

In this sense, my stories can serve as a model for how to reveal bad government policies and social/political failures without resorting to scientific or theoretical language that constitutes almost a majority of contemporary writing about HIV/AIDS and sexuality. They can say, “This complex policy affects me every time I have sex or go to the doctor. And, more importantly, it can be changed.” So far in 2015, there have been numerous situations where, in telling my story, others have been willing to come forward and reveal deeply personal things they remarked that they previously hadn’t told anyone. To me, this is the success of the project. It allows people to see the inherent transformational value of theirs stories through my insistence that my own observations matter.

What does authoethnography look like? To answer these questions I consulted the newly released text Autoethnography: Understanding Qualitative Research (2015). It is itself innovative approach to this discipline because the three authors use their own authoethnographic work and personal narrative throughout the text to make clear points on formal research methodology. They develop a framework for authoethnography but also show just how many forms it can take.

Authoethnography follows basic principles. It is “sense making,” meaning that it makes sense of specific life events and demonstrates their transformational value (27). It is a“reflexive” in that it locates the researcher’s sense of identity in relation to the concept of otherness (29). It is based on an insider role, i.e. I am a 26 year old queer man so I can take about HIV/AIDS from a position of authority (31). It also critiques cultural norms and values systems that led to social exclusion or inequality (32-33) and uses these observations to yield productive responses from audience members that I described above (35). However, the writing itself takes on many iterations.

One of these is autoethnographic fieldwork, which is the “study of culture” through personal experience (50). When I go to Mexico City, I will be conducting autoethnographic fieldwork because I will write about navigating a new language of desire unique to the Spanish language. This can happen by integrating literature distributed at bars, by using text from online dating/hook up profiles, having informal (non-interview) conversations, or by direct experience.

One of the other methods I will employ heavily is “layered accounts,” in which different fragments of history, memory, and culture intersect with my own experiences (86). The creation of this archive is essentially a piecing back together of sexual histories and movements that have been ripped apart by different social and political forces. Organizations like ACT UP, Treatment Action Campaign, and others that were active in the 1980s and early 1990s no longer have the same political relevance, despite the fact that their methods are invaluable for activism today. In my own “touching and feeling” of these artifacts through more conventional archives, I create a contemporary, queer layered account of these struggles.

Finally, though these ideas have yet to be developed, I’m considering “community autoethnographies” as process (89). Here, I can work on a more intimate basis with others who are interested in specific issues. For instance, there has been a lot of recent news on HIV criminalization laws, where people who allegedly fail to disclose their HIV status can be subject to harsh terms. Two such men in Missouri received 30 year prison sentences. A community authoethnography could lead to interwoven personal notes, letters, and other materials with a co-written analysis piece. Others could then contribute or adopt a similar model.

Autoethnography is also fundamentally a self-care practice because it enables one to be sustained through the inherent challenges that come with being a cultural activist. Frequently in the context of a socially innovative project, the organizers are so externally focused on a problem. (In this case, it’d be something like, “How can we empower other individuals to talk more openly about HIV/AIDS and sexual health?”) In being so externally focused, they tend ignore their own emotional states. This leads to high rates of burnout and alienation from one’s work. As a result, social innovation initiatives can easily fall apart.

By investing the time in self-writing, an individual is encouraged to step back and better assess progress through their activist journey. In turn, this produces more of a proactive and visionary optimism rather than a feeling of burnout. Caring for one’s self is thus not selfish or anti-ethical to helping. It is, in fact, essential to relationship and movement building because without a well-developed understanding of sexuality and sexual health, how can you expect to encourage others to break cycles of stigma and shame?


Our Viral Lives is an ambitious, multi-faceted project that intends to open up new avenues for talking about sexuality, sexual health, and HIV/AIDS for an under 35 LGBTQ community disproportionately affected by the virus. Centered in an awareness of content, method and design related to social innovation processes, the project hopes to build awareness, revive lost histories, and encourage empowered story-driven activism in a collaborative approach. Though there are significant challenges in terms of connecting disparate audiences around the globe and counteracting the intense effects of shame, stigma and silence on sexual health at a collective level, Our Viral Lives is optimistic that its form as digital archive connected to everyday life stories and direct activism is uniquely positioned to empower this under 35 audience, lessening the impacts of social and sexual alienation that are omnipresent in 2015.

As Alana Kumbier says in Ephemeral Material, “We can make our own archives and change history” (229). Our Viral Lives can turn into an archive that changes history through the reliance on the ethical principles and methodologies that guide emerging social innovation and sustainability discourses.


Kumbier, Alana. Ephemeral Material: Queering the Archive. Sacramento: Litwin, 2014. Print.

Manzini, Ezio, and Rachel Coad. Design, When Everybody Designs: An Introduction to Design for Social Innovation. Cambridge: MIT, 2015. Print.

Moulaert, Frank, Diana Maccallum, Abid Mehmood, and Abdelillah Hamdouch, eds. The International Handbook on Social Innovation: Collective Action, Social Learning and Transdisciplinary Research. Cheltenham: Edward Elgar, 2014. Print.

Polletta, Francesca. It Was Like a Fever: Storytelling in Protest and Politics. Chicago: U of Chicago, 2006. Print.

One thought on “Out of Silence, Away from Death: Social Innovation Practice

  1. Years ago, when HIV was fairly young, at least to the world as a name, I helped raise the money to set up a center for homeless HIV victimes to either rest up a while, or finish their lives. No treatments were available at the time, and in hospitals the nurses still more or less wore deep sea diving suits.
    When we were giving out leaflets in a town near to the future center, I’ll always remember how some people lept back and dropped the paper when they heard “SIDA”! As if they’d be infected by touching the word, even. In the village where thje center grew, we had a hard time convincing a good half of the inhabitants that the strong local winds couldn’t carry the virus.
    It was so … primative, and so sad for the ill, many of whom were actually infected by unlucky blood transfusions!
    Have attitudes become more realistic with the years? I hope so.


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