Finding strength in identity: Why some Choose to Embrace Blindness
The experience of losing sight in adulthood fundamentally reshapes a person’s sense of self, disrupting the established identity forged during adolescence. This necessitates a rebuilding of one’s autobiographical narrative, frequently enough through embracing new roles, communities, and beliefs (Ferrey et al.,2024; Galvin,2005). Crucially, the quality of relationships plays a vital role in this process, requiring individuals to cultivate connections with those who accept their blindness while acknowledging the potential loss of relationships with those who cannot (Branje et al.,2021). As one young woman, Pearl, poignantly expressed, “It really upset me. I lost so many friends because I wasn’t Pearl. I was Pearl who just found out she has got an eye disability” (Robertson et al., 2021).
The path to a new identity is particularly complex for individuals who retain some vision during adolescence, appearing sighted to others. Kaila Allen,a personal progress coach from Arizona,exemplifies this experience.Born with a hereditary retinal condition, Kaila lost her peripheral vision in childhood but maintained enough central vision to participate in many typical sighted activities. She was mainstreamed throughout her schooling and simultaneously received rehabilitation services to prepare for the eventual loss of her central vision.
This “twilight existence” between the sighted and blind worlds created critically important internal conflict for Kaila. When asked if she would have chosen a cure for her retinal disease as a teenager, she readily answered, “Yes.” Her partial sightedness caused embarrassment due to its difference from her fully sighted peers, and it prevented her from participating in a significant rite of passage: obtaining a driver’s license.
Kaila experienced a lack of belonging in both the sighted and blind communities, hindering her ability to resolve her adolescent identity crisis. However, a surprising shift occurred when she ultimately lost her central vision in adulthood. She found a sense of belonging within the blind community,and when asked if she would now choose sight if a cure were available,her answer was a resolute,”No.” She explained this decision by stating, “I know who I am. I know where I sit in the world and I’m cozy with what I’m doing.”
kaila’s positive outlook demonstrates the successful formation of a disability identity (Dunn & Burcaw, 2013; Forber-Pratt et al., 2017). This strong sense of self is characterized by a positive self-perception, pride in one’s disability status, and a feeling of connection to a community of disabled individuals.
Research by Harlan Hahn and Todd Belt (2004) supports this observation. They found that individuals with a robust disability identity are less likely to seek a “cure.” their study of disability activists revealed a significant correlation: the stronger an individual’s rejection of the idea of a cure, the greater their agreement with disability-affirmation statements, such as “In general, I’m glad to be a person with a disability” and “Being a person with a disability is an important reflection of me.”
This suggests that embracing a disability identity can lead to a profound sense of self-acceptance and belonging, ultimately shifting priorities away from seeking a cure and towards celebrating the richness and value of a life lived with disability.
(Note: I want to thank Kiera Feng for her editorial assistance.)
