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.
