The first paper session after the opening keynote at the 2019 AoIR Flashpoint Symposium starts with Daphna Yeshua Katz and Ylva Hård af Segerstad, whose focus is on online support groups for stigmatised communities. They argue that such groups may actually limit these communities’ access to online support. This may be a problem related especially to scalability and searchability.
The project studied groups supporting anorexics, people in treatment for infertility, bereaved parents, and Israeli army veterans with PTSD, across a variety of platforms. It explored how media affordances determine the online boundary work of such online communities, by undertaking a series of one-on-one semi-structured interviews.
Members and administrators of these groups engaged in monopolisation, by discouraging or excluding certain users from access (e.g. by posting disclaimers to discourage recovering anorexics from reading on, or by interviewing PTSD sufferers before giving them access) and by removing pseudo-members or impostors and deleting their posts (e.g. after verifying the personal details and stories provided by members).
This may exclude people who are struggling with such issues by are not formally identifying as members of these communities, however, and it may make such groups more difficult to access because the substantial barriers to participation may reduce the findability of such communities. Guarding these groups as safe-havens for sufferers makes them less searchable and scalable, and reduces the access to online support for those who are excluded even as it seeks to create a more supportive environment for those who are accepted into the community.
