"I Don't Want to be Treated Differently:" Understanding How Stigma Affects Disability Disclosure Decisions in the Workplace

Background and purpose: Stigma and discrimination affect the well-being of individuals with disabilities in a multitude of ways. This study aimed to uncover how stigma and/or discrimination affects the employment experiences of individuals with Parkinson’s disease (PD). Limited research exists on the employment experiences of individuals with PD, despite the fact that the average PD onset occurs during traditional working years, and individuals with PD are more likely to be unemployed than the general population. What role do stigma and discrimination play in shaping employment options for individuals with PD? How do individuals with PD make decisions regarding if, when and to whom to disclose in the workplace? How might perceived stigma or discrimination influence willingness to request accommodations? Understanding how stigma and discrimination affects employment experiences can inform intervention strategies to support self-determination in the context of work.

Methods: One-on-one qualitative interviews were conducted with 15 working, unemployed or retired individuals with PD between the ages of 40 to 64. Purposive sampling and recruitment occurred in the Movement Disorders clinic of a safety net teaching hospital. Interviews were audio-recorded and transcribed. Data analysis utilized the Listening Guide, a narrative analysis technique that allows for in-depth analysis of both manifest and latent content, with the intention of elevating and examining a participant’s individual voice while attending to context. NVivo 12 was used to organize findings.

Results: Interviewees weighed the burden of “hiding” symptoms with the potential consequences of disclosing. Interviewees voiced fear of disclosure resulting in being “treated differently:” acquiring a new, less desirable workplace identity as less competent or capable, or facing loss of status, clients or opportunities. At the same time, many also felt disclosure was necessary due to concerns that visible symptoms (such as tremor or speech difficulties) would be attributed to alcoholism or drug abuse, or due to an increasing need for accommodations in order to continue working. Interviewees who were currently working and voiced fewer concerns about disclosure were 1) in positions of relative power and/or autonomy (such as long-standing self-employment) and/or 2) reported established, supportive relationships with employers and confidence in the value of their work-related skill sets. Many interviewees described supportive reactions to disclosure, but others reported work loss due to disability-related discrimination. The majority of interviewees expressed certainty of facing discrimination if they ever needed to search for new work.

Conclusions and Implications: Interviewees grappled with the decision of whether or not to disclose in the workplace, evaluating the risks of disclosure against the potential benefits. Interviewee's voiced fears of acquiring a less desirable identity upon disclosure illustrates the pervasiveness of disability stigma. Most interviewees anticipated discrimination in the job market, despite existing legislation designed to safeguard against disability-related employment discrimination. Findings point to the potential need for stronger legislative protections and further research on policy and practice strategies for addressing disability stigma at the intrapersonal, interpersonal and macro levels.