Privacy and the Ethics of Disability Research: Changing Perceptions of Privacy and Smartphone Use

For people with disabilities, the smartphone offers ways to radically rewrite and transform everyday life with the design of accessible interfaces, platforms, and software. Research into these experiences are limited. In Perth, Western Australia, a research project into how people with disabilities use their smartphones to navigate around urban spaces struck difficulty when participants who had signed up for the study were fully briefed on the project receiving the highest level of ethics clearance and who were able to opt out at any stage resisted having data collected that would track how they used their phones for the purposes of understanding their movement around their environment. The impact of a series of Facebook privacy scandals – not least of which was the Cambridge Analytica incident – along with other recent privacy violation revelations such as those made by Edward Snowden all served to make participants wary of sharing their data with the researchers. People with disabilities consistently engage in privacy management in their daily lives as they encounter professionals, friends, and strangers who press up against the privacy barriers that able-bodied people take for granted. While Big Data and digital ethnographies are seen to be a boon for contemporary researchers who might leverage the detailed and diverse data that digital devices can track and tether, this paper considers the intersections of data, privacy, disability, and digitization to unpack the anxieties and ambivalences of using smart systems to conduct research.