The Unexpected Comfort of Blindness: Why a ‘Cure’ Isn’t Always the Goal
For most sighted individuals, the thought of losing vision evokes profound fear – often more so than other disabilities. We instinctively view blindness as a tragedy, assuming those affected desperately seek a return to sight. But a growing body of research, and the lived experiences of individuals navigating vision loss, reveal a far more nuanced reality: that a strong sense of identity can, surprisingly, emerge from blindness, leading some to question whether a ‘cure’ is always desired.
The Shifting Sands of Identity
Our sense of self, in psychological terms, is built on both similarities and differences. We find belonging through shared values and beliefs, but also define ourselves by what sets us apart. This process, famously explored by Erik Erikson, is particularly acute during adolescence – a period of intense self-discovery and what he termed an “identity crisis.” It’s during these formative years that we construct a narrative about who we are, who we were, and who we will become.
The timing of vision loss dramatically impacts this narrative. Those who lose sight early in life often integrate it seamlessly into their identity. As one teenager put it, blindness is simply “who I am.” But for those who experience vision loss in adulthood, the impact is far more disruptive. The established “sighted identity” is fractured, requiring a complete re-evaluation of self and a rebuilding of life’s narrative. This often involves forging new relationships with those who understand and accept their new reality, and sometimes, the painful loss of connections with those who cannot.
The Twilight Zone of Partial Sight
The experience can be particularly complex for individuals with residual vision, existing in a liminal space between the sighted and blind worlds. Kaila Allen, a personal development coach from Arizona, embodies this struggle. Born with a hereditary retinal condition, she navigated life as legally blind but with enough central vision to appear sighted. This created a sense of not fully belonging anywhere, a feeling of being perpetually “othered.” She initially yearned for a cure, embarrassed by her difference and excluded from experiences considered rites of passage, like driving.
However, Kaila’s perspective shifted dramatically when she ultimately lost her remaining central vision. Paradoxically, this loss brought a sense of relief and belonging. “I know who I am,” she explains. “I know where I sit in the world and I’m comfortable with what I’m doing.” This transformation highlights a crucial point: identity isn’t solely about having sight, but about being recognized and accepted within a community.
The Rise of Disability Identity and the Rejection of the ‘Cure’ Narrative
Kaila’s story isn’t unique. Research by Dunn & Burcaw (2013) and Forber-Pratt et al. (2017) demonstrates that individuals who develop a strong disability identity exhibit a positive self-image, pride in their status, and a sense of community. This sense of belonging often leads to a questioning of the very notion of a ‘cure.’
A study by Hahn and Belt (2004) found that disability activists, when presented with the hypothetical opportunity to eliminate their disability with a “magic pill,” frequently declined. The stronger their disability identity, the less they desired a cure. They actively affirmed statements like, “Being a person with a disability is an important reflection of me.” This isn’t about denying the challenges of blindness, but about recognizing that disability can be an integral and valued part of one’s identity.
Looking Ahead: Beyond the Search for a Cure
The implications of this shift in perspective are profound. As medical advancements continue to push the boundaries of what’s possible in restoring vision, it’s crucial to consider the potential impact on the blindness community. Simply offering a ‘cure’ isn’t enough. We need to understand that for some, the loss of their disability identity could be as devastating as the loss of sight itself. Future research and development should focus not only on restoring vision, but also on fostering inclusivity, challenging societal biases, and empowering individuals to embrace their full selves, regardless of their visual abilities. The conversation needs to move beyond simply *fixing* blindness, and towards supporting a thriving and self-defined blind community.
What are your thoughts on the evolving relationship between disability and identity? Share your perspective in the comments below!
