April 4-6, 2024 • Hyatt Regency • Lexington, KY
Innovations in Health Communication
Innovations in Health Communication
Abstract: How Visually Impaired Individuals Manage Disclosure of Their Visual Impairment
The number of visually impaired/blind individuals in the U.S. is expected to more than double by 2050 (CDC, 2022). However, being visually impaired or legally blind (having vision that is uncorrectable or cannot be corrected to a legally acceptable level) is still extremely stigmatized (Bulk et al., 2020; Goffman, 1963) and face threatening (e.g., Romo et al., 2023).
Despite public perception, visual impairment exists on a spectrum. Very few visually impaired individuals (VIIs) are completely blind and see no light (The Chicago Lighthouse, 2016). In fact, some are able to pass as sighted, which necessitates them having to decide whether to reveal or conceal their low vision.
The goal of this study was to uncover how VIIs negotiated disclosure and privacy boundaries around their eyesight. After all, while concealing may protect VIIs from stigma and enable them to pass into mainstream society, it may prohibit them from receiving needed assistance and accommodations, result in greater eye strain and fatigue, put them at physical risk, and result in others feeling misled or judged (Frame, 2004).
Thus, we posed the following research question: How do visually impaired individuals manage disclosure of their visual impairment?
Following IRB approval, the first and third author (the third author is visually impaired) conducted individual interviews with 24 people who identified as having low vision. We recruited participants through word of mouth, snowball sampling, and a mass email to a guide dog user group. Participants consisted of 16 females (67%), 7 males (29%), and 1 nonbinary individual (4%). Ages ranged from 20-69 years old (M = 47.13, SD = 16.21) and the vast majority (n = 23) were Caucasian, with one Asian American participant. Seven participants (29%) were born blind whereas the other 17 (71%) interviewees lost their vision in childhood or adulthood. Interviews were audio-recorded and fully transcribed and ranged from 38 to 108 minutes (M= 82 minutes). Interviewees received a $15 Amazon gift card.
Using Braun and Clarke’s (2006; 2019) reflexive thematic analysis and communication privacy management theory (CPM; Petronio, 2002) as a lens, we found that, consistent with the tenets of CPM (Petronio, 2002), participants weighed the risks and rewards of disclosure, revealing when the benefits outweighed the costs and vice versa.
VIIs disclosed to 1) procure tangible access/assistance; 2) establish friendships, connections, and romantic relationships; 3) advocate and educate/dispel myths, and 4) because they perceived being known as blind was better than associations with more stigmatized groups (e.g., not driving because they were visually impaired versus a drunk driver). Conversely, interviewees concealed to 1) avoid stigma; 2) feel so-called “normal;” 3) avoid questions, scrutiny, and being a poster child or advocate of the visually impaired community; 4) and to succeed professionally.
As VIIs are rarely provided with resources to help them manage life skills and communication (Frame, 2004), sharing our investigation's research-based disclosure criteria with VII and allies would be an innovative way for people in the community to feel more empowered and in control of their privacy management and boundaries.
Despite public perception, visual impairment exists on a spectrum. Very few visually impaired individuals (VIIs) are completely blind and see no light (The Chicago Lighthouse, 2016). In fact, some are able to pass as sighted, which necessitates them having to decide whether to reveal or conceal their low vision.
The goal of this study was to uncover how VIIs negotiated disclosure and privacy boundaries around their eyesight. After all, while concealing may protect VIIs from stigma and enable them to pass into mainstream society, it may prohibit them from receiving needed assistance and accommodations, result in greater eye strain and fatigue, put them at physical risk, and result in others feeling misled or judged (Frame, 2004).
Thus, we posed the following research question: How do visually impaired individuals manage disclosure of their visual impairment?
Following IRB approval, the first and third author (the third author is visually impaired) conducted individual interviews with 24 people who identified as having low vision. We recruited participants through word of mouth, snowball sampling, and a mass email to a guide dog user group. Participants consisted of 16 females (67%), 7 males (29%), and 1 nonbinary individual (4%). Ages ranged from 20-69 years old (M = 47.13, SD = 16.21) and the vast majority (n = 23) were Caucasian, with one Asian American participant. Seven participants (29%) were born blind whereas the other 17 (71%) interviewees lost their vision in childhood or adulthood. Interviews were audio-recorded and fully transcribed and ranged from 38 to 108 minutes (M= 82 minutes). Interviewees received a $15 Amazon gift card.
Using Braun and Clarke’s (2006; 2019) reflexive thematic analysis and communication privacy management theory (CPM; Petronio, 2002) as a lens, we found that, consistent with the tenets of CPM (Petronio, 2002), participants weighed the risks and rewards of disclosure, revealing when the benefits outweighed the costs and vice versa.
VIIs disclosed to 1) procure tangible access/assistance; 2) establish friendships, connections, and romantic relationships; 3) advocate and educate/dispel myths, and 4) because they perceived being known as blind was better than associations with more stigmatized groups (e.g., not driving because they were visually impaired versus a drunk driver). Conversely, interviewees concealed to 1) avoid stigma; 2) feel so-called “normal;” 3) avoid questions, scrutiny, and being a poster child or advocate of the visually impaired community; 4) and to succeed professionally.
As VIIs are rarely provided with resources to help them manage life skills and communication (Frame, 2004), sharing our investigation's research-based disclosure criteria with VII and allies would be an innovative way for people in the community to feel more empowered and in control of their privacy management and boundaries.