“The elephant in the room”: Disclosing facial differences

Bogart, Kathleen R.; Bryson, Brooke A.; Plackowski, Emily F.; Sharratt, Nicholas D.

Abstract

Due to high visibility and low public awareness, people with facial differences (FD) frequently face decisions about whether to explain or disclose their FD. Although disclosure of concealable stigma has been frequently researched, little work has examined disclosure from the perspectives of people with FD, whose stigma is often not concealable. Thematic analysis was used to explore semistructured interviews of adults (n = 16) with diverse FDs. Disclosure approaches varied dependent on the discloser, the disclosee, and the context. Two themes illustrated participants’ approaches to (non)disclosure: agentic and autonomous. Agentic described when participants felt they had no choice in explaining or not explaining their condition, which fell into subthemes of forced disclosure, forced nondisclosure, and unauthorized disclosure. Those who used autonomous approaches made the deliberate decision to disclose or not disclose their FD to others. Autonomous subthemes included social avoidance, concealment, false disclosure, selective disclosure, indiscriminate disclosure, and broadcasting. Three experiential themes—misunderstanding, connection, and empowerment—characterized antecedents, experiences with, and consequences of (non)disclosure. Agentic (non)disclosure and autonomous (non)disclosure were frequently associated with the misunderstanding theme, while autonomous disclosure involved themes of connection and empowerment and was thus experienced as more beneficial. Participants’ advice was to allow people with FD disclosure autonomy. Improved social representation of people with FDs, public awareness, and stigma reduction will help remove the onus of disclosure from individuals with FD

• Journal Article Type: Article
• Acceptance Date: Nov 16, 2022
• Online Publication Date: Dec 22, 2022
• Publication Date: 2024
• Deposit Date: Jan 30, 2023
• Publicly Available Date: Feb 20, 2023
• Journal: Stigma and Health
• Print ISSN: 2376-6972
• Electronic ISSN: 2376-6964
• Publisher: American Psychological Association
• Peer Reviewed: Peer Reviewed
• Volume: 9
• Issue: 3
• Pages: 379–388
• DOI: https://doi.org/10.1037/sah0000430
• Keywords: Psychiatry and Mental health; Public Health, Environmental and Occupational Health; Health Policy; Clinical Psychology; Social Psychology
• Public URL: https://uwe-repository.worktribe.com/output/10357687
• Publisher URL: https://psycnet.apa.org/doiLanding?doi=10.1037%2Fsah0000430