Can a planned sociotechnical system change culture? I hope to do this with a website that collects stories by disabled people and people with mental illnesses. The fields in which I am working are interdisciplinary. Disability Studies in higher education is often departmentalized as English, Anthropology, and American Studies courses. In this piece, I bring Disability Studies into conversation with the fields of Communications and Computing. I look at artefacts, Mahoney’s “Histories of Computing(s), and systems.
My inspiration for the Disability Storytelling (DDS) website comes from my experience as a disabled person (my main disabilities are Ehlers-Danlos Syndrome and rapid cycling bipolar disorder). As an undergraduate student at Grinnell College with undiagnosed physical health conditions and mental illness, I faced isolation and confusion around where to seek help and how to talk about my experiences, like so many others with disabilities. My close friend and classmate, Devyn Ellis, another self-identified disabled person, and I received funding from Grinnell’s Student Publications and Radio Committee (SPARC) to publish Vantage Point, a magazine highlighting multiple student perspectives on disability and mental health on campus, including research papers, poetry, photography, scanned journal entries, and more. Vantage Point distributed over 600 copies in two years.
Use of identity-first language (the conscious choice to use “disabled person” instead of “person with a disability) is used throughout this piece because disability is such an integral part of identity, and shapes the need for the computing I am describing. The disability community frequently advocates that “disabled” is too often stigmatized as a negative characteristic, rather than a simple fact of humanity.
Within the disability community, I have many people to thank for their personal encouragement: Liz Weintraub, Pat Kinley, Devyn Ellis, Jennifer Tuell, Oksana Klimova, Rylin Rodgers, Emily Ladau, Sheida Raley, Alice Zhang, Ben Kaufman, Andy Imparato, Luis Valdez, and my crew, Teresa Nguyen, Andy Arias, and Frances Isbel. Others, whom I admire from afar, include Alice Wong, Sara Luterman, Imani Barbarin, Caitlin Wood, and the AUCD Network. An additional thanks to Georgetown University professors Tawara Goode, Martin Irvine, Denise Bedford, and Jeanine Turner.
As a disabled student, employee, family member, etc., I’ve been lucky enough to have the advocacy skills and family support that I’ve needed in order to be successful. One aunt, though, recently lovingly reminded me that everything I’ve worked hard for could be taken away because of my disabilities. If I acted a certain way because of my mental illness, or even if someone assumed I was acting that way because they knew I had a mental illness, then I risk being fired, being pressured to leave school, being accused of being crazy. Every day that nothing bad happens is an accomplishment for me. And I’m not alone. Go to any disability or mental health advocacy event, and you will get the message, “One in four Americans has a disability, one in four Americans has mental illness.”
When I was first working toward my undergraduate degree, I formed a community of disabled and mentally ill students by collecting various student perspectives on their experiences with disability and mental health on campus, publishing and disseminating our information in a magazine. At the time, I knew nothing about the disability community, and the Americans with Disabilities Act (ADA) was a new concept for me–I never even learned about it in school. Since then, I have expanded my network and disability knowledge, and dreamed of expanding this idea into a national, digital, fully accessible endeavor.
I know that networking and sharing experiences is a way of building disability culture. “Culture is the name we give to the infinite web of meaning that human beings have been weaving for millennia. We participate in culture when we imitate one another’s behaviors, adopt common values and practices, share symbolic codes like language, music, or the latest dress style. To see any artifact (i.e., any human-made object) as part of culture is to understand how it becomes meaningful through the social activities, thoughts, and actions of the people who engage with it” (Murray, 2012, pp. 1). Within cultures, users are meant to manipulate those artefacts (Vermaas, 2015). Disability culture is as rich as disability itself. “Disability is mutable and ever evolving. Disability is both apparent and nonapparent. Disability is pain, struggle, brilliance, abundance, and joy. Disability is sociopolitical, cultural, and biological. Being visible and claiming a disabled identity brings risks as much as it brings pride,” (Wong, A., 2020, pp. xxii). I know computing is going to be the most widespread, accessible way to manipulate and affect change within disability culture, by disabled people.
Like the magazine I created in college, I want to use computing to create a Digital Disability Storytelling (DDS) sociotechnical system. “A system is understood to be an entity that can be separated into parts, which are all simultaneously linked to each other in a specific way” (Vermaas et. al, 2015, pp. 68). The goal of DDS is for it to be a system which ultimately enhances the agency disabled people. Enhancing the agency of disabled people will elevate our power and roles within society, reduce ableist stigma, and improve attitudes of mainstream culture to accept and include disabled culture. Disabled people will be adding to their own history. “History is the record of our collective experience, our social memory. We turn to it as we do our personal experience, consciously when we meet new situations, unconsciously as we live day to day,” (Mahoney, 2005, pp. 120). In this piece, I am going to examine what a sociotechnical system is and how computing can make DDS possible.
“Sometimes there is the expectation that… I am looking for solutions to social problems. In fact, though, I am looking at the processes of the problems.” —Anna Deavere Smith, Twilight: Los Angeles, 1992
In one of the letters from the editors from my undergrad magazine (which I now repeat as much as possible), I say “stories are one of the most powerful tools we have” to enact change. When I reference “stories” and “storytelling” throughout this piece, I am using Alice Wong’s definition. “Storytelling can be more than a post, essay, or book. It can be an emoji, a meme, a selfie, or a tweet. It can become a movement for social change,” (Wong, A., 2020, pp. xviii). Going digital is a way to make these stories accessible to everyone, combining knowledge of disabilities and accessibility with the knowledge of computing. “We can manipulate them, and they in turn can trigger actions in the world,” (Mahoney, 2005, pp. 129).
“From the early 1950’s down to the present, various communities of computing have translated large portions of our world–our experience with it and our interaction with it–into computational models to be enacted on computers” (Mahoney, 2005, pp. 127). That translation of information from our world to the virtual world is a transformation of information (Denning & Martell, 2015). Translation from storytelling to a digital format is a process that I am not completely comfortable with yet, but know that a great deal of it involves making each story searchable, so that others can find it based on keywords and metadata.
Some of these submitted stories will be short. Others, longer. Each story contributes symbolic culture to the system. Think of each story like a symbol for something else going on outside of the digital space. “A symbol-based system of communication” is “the defining aspect of the human mind” (Wong, K., 2005, p. 94). The symbolic culture of DDS will represent a sample of all disabled people’s perspectives, which will be accomplished by its design. “Design is… about modelling the world in the computer, about computational modelling, about translating a portion of the world into terms a computer can ‘understand,'” (Mahoney, 2005, pp. 128). Computation is symbolic, syntactical, sequential, and structural (Mahoney, 2005, p. 129).
If disabled people can find others’ stories based on search terms like “autism”, “education”, and “midwest,” then they will be able to find people like them. Finding others through software and computation is empowering to disabled people, validating their own experiences, fighting feelings of isolation, and providing agency to feel like they are doing something by contributing to the DDS. “Software and computation were specifically designed from the start as inter-agency and extended or distributed cognition (delegating cognitive tasks and creating actions that computers can do, perform, or ‘execute’)” (Irvine, 2020, pp. 5). Agency is often something that is challenged or even unavailable to disabled people, for a number of social and political reasons, but DDS will be an interface which offers agency for disabled people to describe their own lives, to share their own stories, possibly for the first time in their lives.
It’s quite common for publicly-funded research projects “to make their data available for free to the public” and for other projects to “mine” that data “for possible insights” (Denning & Martell, 2015, p. 31). In addition to fostering community between disabled people, I would like for DDS’ data to be available for free to scientists, educators, policymakers, and anyone else who wanted to use these stories.
Disabled people submitting to DDS will use their personal phones, tablets, and computers. “To ‘use’ a ‘personal’ computer today is, despite its much-hyped origins in the counter-culture, to work in a variety of environments created by a host of anonymous people who have made decisions about tasks to be done and the ways in which they should be done,” (Mahoney, 2005, pp. 132). Designing DDS will prioritize accessibility, and contributors will not need to be tech savvy in order to participate. “Most of the ‘computing’ actions, what makes the device work as you perceive it, is actually distributed across many invisible networked computers, the “massive modularity” of Internet system design” (Irvine, 2020, pp. 2). Using combinatorial design principles of existing programs and systems will be key, and something I will be thinking about when designing DDS.
“Different groups of people saw different possibilities in computing” (Mahoney, 2005, p. 124), and it is with this same type of vision that I am able to have a goal of using computing to help solve a social problem. Too often, to the point of incarceration, and murder, disabled people’s voices and stories are not heard, and not cared about. I know computing is powerful, and wanted to learn more about technology because I think I can use it to better the lives of disabled people and their loved ones. Through computing, I want to form a database of narratives collected from disabled people in order to 1) form a community of practice, and 2) enhance scientific research, education, and advocacy efforts benefiting disabled people.
Computers were first designed for and by scientists and engineers (Mahoney, 2005, pp. 124). The use of computers has evolved based on the groups who need them for different purposes. Using computing to manage data is no new concept. Data processing, the field of management science, is the first group, or community of practice, to use computing for commercial purposes (Mahoney, 2005, pp. 124). This data, when applying “media theory and technical mediation as part of social systems theory provide conceptual models that enable us to get inside the ‘black boxes’ by recovering the implemented design principles that come from the same system in which we are a part” (Irvine, 2020, pp. 1).
In discussing how problems get solved, it is helpful to look at the tools people are using. These tools, or technical artefacts, are physical objects combined with a plan to peform a function (Vermaas et al., 2011). Who uses these tools? People who need to accomplish a task. The people using technical artefacts are in the position to accomplish said task based on the roles they play within society (Vermaas et al., 2011).
DDS is going to be a tool that solves a problem, but it doesn’t have a physical object. Does this make it an artefact still? Yes, but instead of a technical artefact, all of the submissions, since virtual will be examples of cognitive artefacts. DDS will be an example of a “cognitive-semiotic” technology (Irvine, 2020, p. 2), as the unseen and unheard stories of disabled people are collected. Also, users of DDS will not see the computing or other technological mechanics of how the metadata helps the code retrieve a submission or anything else; the interface will be user-friendly and imperatively accessible. A huge part of my future research will be dedicated to making the interface accessible, but for now, I think it’s just important to highlight how each submission is a representation of and a tool demonstrating the perspective of the the person who submitted it. This is huge because too often disabled people are treated like they’re stupid, or their thoughts don’t matter, like they are less than human. This is wrong. These incorrect stereotypes are what keeps disabled people excluded from society, denied access to resources like employment, healthcare, and education, and in the worst cases, killed.
There are known features of interfaces that are well-accepted navigational tools, which DDS will apply, like WIMP. “The graphical user interface, known for its main features as ‘WIMP’ (windows, icons, mouse, pull-down menus), emerged from the human augmentation community, with roots in behaviourist psychology and military command and control systems” (Mahoney, 2005, pp. 132).
Lastly, DDS will be a hybrid system. “Hybrid systems, in which certain components, are described and researched using the natural sciences and other components, are described by drawing on the social sciences are called sociotechnical systems” (Vermaas et al., 2015, pp. 69).
The future of the humanities is digital (Mahoney, 2005), and as a hybrid, sociotechnical system, DDS will create agency for disabled people. It will gather cultural artefacts which act to symbolize multiple perspectives of disabled people, foster community, and affect the mainstream culture in a way that makes life easier for disabled people.
Denning, P. J., & Martell, C. H. (2015). Great principles of computing. MIT Press Books.
Irvine, M. (2020). “Understanding media, mediation, and sociotechnical artefacts:
methods for de-blackboxing.” Georgetown University. (Draft of book chapter, for student reference only.)
Mahoney, M.S. (2005). “The histories of computing(s).” Interdisciplinary science reviews, 30:2, 119-135, DOI: 10.1179/030801805X25927
Murray, J. H. (2012). Inventing the medium: Principles of interaction design as a cultural practice. The MIT Press.
Vermaas, P., Kroes, van de Poel, I., Franssen, M., & Houkes, W. (2011). Technical artefacts; Sociotechnical systems. In A philosophy of technology: From technical artefacts to sociotechnical systems (pp. 5-20; pp. 67-81). Morgan & Claypool Publishers.
Wong, A. (2020.) The disability visibility project. Vintage Books, a division of Random House Publishing, LLC.
Wong, K. (2005.) “The morning of the modern mind: controversial studies suggest that the roots of our vaunted intellect run deeper than is commonly believed.” Scientific American. June 2005. Scientific American, Inc.