Overhearing hushed voices: Using unobtrusive methods to uncover the work-related sentiments of people with epilepsy

Despite high unemployment and discrimination, disability is often overshadowed by race and gender in workplace diversity discussions. This study sought to uncover the work-related sentiments of people with epilepsy (PWE) in their own voices. Epilepsy is a stigmatized invisible disability wherein first-person accounts are difficult to uncover because of stigma. Hence, the discussion on accommodation, inclusion and access for PWE is driven by others, rather than people with epilepsy. By hearing from PWE, workplace solutions can be more relevant to their needs.

We use unobtrusive data mining of discussions by PWE by studying anonymous posts on the Epilepsy Foundation community forum over a 16-year period. We examine their sentiments, beliefs, and emotions impacting work for people with epilepsy (PWE), and analyzed perceptions of discrimination to understand what organizations can do better to be inclusive and supportive at work.

We found that PWE sentiments around work were more positive compared to nonwork sentiments. Their work sentiments were analytical, achievement oriented and associated with positive emotions. Work was associated with love and affiliation. However, PWE posts were broadly also more anxious, health centered and tentative reflecting their fears around their health and stigma in employment.

This study is unique in using unobtrusive data mining techniques to analyze the challenges faced by people with disabilities. To our knowledge, there is no such study of adults with epilepsy and the workplace. The methodology used reduces response bias. Questions about disability are difficult to answer for people who face stigma around their disability.