There’s a certain look I’ve come to expect when I tell someone that I’m going blind. At thirty-four, and with no visible markers of impairment, most people are stunned to learn that I have retinitis pigmentosa, an inherited eye disease that causes vision loss and eventual blindness. The look – a mixture of surprise tempered by a politely-concealed pity – is always the same, and does not change based on the circumstances preceding the revelation or the social status of the listener. Curiously, it is almost always followed by an apology; “I’m sorry to hear that” or “I’m sorry, I had no idea.”
There’s something in that knee-jerk response that reveals a lot about how society perceives the blind. Blindness is something that elicits sympathy. It’s up there with divorce, a terminal illness, or some other dreaded affliction. “The Look” is a signifier of what I’ve unconsciously known for years: to many, blindness is a fate worse than death. Just take a moment to pose the common school-yard hypothetical, “If you had to lose a sense, which one would it be?” to a nearby acquaintance. It won’t be sight. Vision is something most people can’t even fathom being without. For a long time, this perception shaped my own identity as a sighted woman with degenerating vision who is not yet, but who might some day be, blind.
Many of us cannot escape or conceal our marginalized identities (me: my female gender or blackness), and in that regard, identity is straightforward. Certainly, there are complexities associated with those realities, but for the most part, you are who the world perceives you to be. Identity becomes slightly more complicated when you, like me, have an “invisible illness” or condition that, at first blush, cannot be detected. This means that you are often navigating the space between living your truth and opting in and out of how the world reacts to you based on what you choose to reveal.
Certain aspects of my faulty sight can be attributed or chalked up to clumsiness or not paying attention. For example, a hallmark of my eye disease is that I cannot see well at night. In my twenties, after I was diagnosed, I often found myself playing up or pandering to more benign assumptions of my less graceful movements. “Are you drunk?” After I’d tripped on a curb following a round of drinks after happy hour would be met with “I must be” and a giggle on my part. I knew that this was a more acceptable answer from a young woman in her twenties and one that made sense. More than that, it would not change my current social status or make waves in my group. Because no matter how much people try to hide it, knowing that someone is afflicted with something they dread stirs immediate discomfort.
Suddenly, you are othered. You are the woman with the white cane. You are the man on the bus with the seeing-eye dog. You are the source of their uneasiness at a crosswalk. The Handicapped. And I didn’t want to be those things to them that night. I wanted to be a carefree young woman who maybe had a few too many rum and cokes. It took me many years to overcome this urge to twist myself into safer parts for the benefit of other people’s comfort.
When I was first diagnosed, I signed up for every newsletter, joined every group, and attended every meeting organized by the local chapter of the Foundation Fighting Blindness. “One day closer to a cure” became my new email signature. But after attending the meetings for a few months, I stopped. I felt out of place. Not only was I the youngest one there, I was also the one with the most vision. Most people there were either blind or close to it. The sense of comfort I initially felt being around people “like me” turned to guilt. My greatest visual issue at that point was a very big astigmatism (corrected by wearing glasses) and some poor night vision and peripheral loss. But perhaps my greatest sense of guilt came from how I felt being around these people. I felt isolated and uncomfortable. I didn’t want to be like them – “The Blind.” Looking at all of these people who were living my future fate produced fear. So there I was: a person straddling two worlds –not fully sighted, and not fully blind.
Then it dawned on me, if even I had internalized such an aversion to blindness, someone who was on her way to experiencing it, what does that say about the average sighted person who is not facing blindness? And what kind of world will I be navigating if ever I finally do lose my vision entirely? One that embraces blindness as a valid, albeit unconventional, experience of life; or one that, quite literally, offers the blind condolences?
Once I accepted my own internalized blindphobia and ableism, it empowered me to see my vision holistically, as part of me and my identity, and not something to be ashamed of or fear. Blindness is not a death sentence.
I now challenge people’s reactions to learning of my eye disease. “Oh, why is that? There’s nothing to be sorry about,” I will politely rebut. This small act of power allows me to reset the tone and shift the perception of what it means to be blind.
I still feel like a woman straddling both worlds, but now, the perception of my sight is not defined by anyone but me. There is something liberating about deciding who you get to be without the world already having decided that for you. In that way, by going blind, I’ve found my small slice of freedom.