What is the worst part of having low vision?

A few weeks back, I was introduced to a fellow graduate student experiencing progressive vision loss. We connected in a familiar unfamiliar way: the intimacy of strangers with shared experience. After obligatory icebreaking conversation about our research interests, professional pursuits, and hobbies outside of academia, we dived deep into discussing our experiences of vision loss.

The conversation turned to the question, “what is the worst part of having low vision?” She answered first, explaining that independent navigation has been the most challenging. Despite advances in public transportation accessibility, in ride sharing services like Uber and Lyft, apps that provide turn by turn walking directions, it’s still much harder to get around independently as a blind or low vision person.

She then asked for my answer. “All the social stuff. Faux pas and isolation.”

Pleasantries and humor begot intimacy. We laughed about embarrassing stories of spilling and tripping and miscommunicating and misunderstanding. We both had an arsenal of humorous stories about walking up to strangers thinking they were our friends, and our friends thinking they were strangers.

The vulnerability under the humor was palpable. We shared the discomfort in transitioning from socially skilled to painfully awkward. We described moments when we realized we were different, and we knew we were being judged by those around us.

I confided, “and I want to scream that I’m not awkward or insensitive! I just can’t see!”

She challenged me, “the thing is, if we behave in a way that is awkward and insensitive, even if it is because of low vision, others perceive it just the same. It’s as if loosing my vision has made me awkward and insensitive. And there’s nothing to be done about it. Because others’ perceptions of us define us. It’s self-fulfilling.”

As we sat in the heaviness of that observation, I was flooded with concern over how differently others’ perception of me is from my own perception of myself. When I initially shared that the social stuff is the hardest part of vision loss, I hadn’t extended that to the characterization of my identity. I always viewed myself as socially skilled but trapped in a body forcing my social awkwardness. But, my body is me. I’m not trapped: this is who I am.

As our conversation transitioned back to levity, commiserating about the typical woes of graduate student life, these ideas stayed with me. 

Others’ perceptions of us shape us, but do not define us. Indeed, I may be more socially awkward now. But I am not defined by all the beliefs others have about me. Some people believe I am less capable, less deserving, or less worthy. Most days I know these beliefs are unequivocally untrue. But it would be dishonest not to acknowledge that some days, I doubt myself, wondering if there is a kernel of truth to these beliefs. 

Now my answer to "what is the worst part of having low vision?" has changed. It's still a type of "social stuff," but it's more fundamental to my identity. The hardest part of my vision loss is the changes in others’ perception of me - my social skills, my competence, my capabilities - because others' perceptions have the power to make me question myself.