As a volunteer, my job was to stand around with a red bag full of donation envelopes and wait for politely-dressed people to make eye contact with me so that I would cruise over to their table and permit them to deposit inquiries in my ears, dripping with silver to match my heels.
I could not do this job. Upon receiving the scanty training, I reported my disability to the volunteer coordinator. “Excuse me, hi. Yes, so, um, I believe that this task will be beyond my visual capacity, so I’m hoping to just back away and, maybe, stand against the wall.”
Her automatic reply: “Okay. Say no more. I understand. Here, take this bag and review the instructions, just in case -you know- you decide you can do it.”
I imagine this is hard for some able-bodied folks to really get, but this “just in case...you decide you can” felt like a wrist slap followed by a sucker punch. I was not asking for a pep talk, coach. I dropped a premeditated, gut-wrenching (as always) disability card. I do not drop them lightly.
I am a big girl, a big enough girl, in fact, that I did not want to knock someone’s elbow into someone else’s mimosa glass or stomp on someone’s purse in the pursuit of a peripheral smudge that may or may not have been beckoning me with a tired-yet-tasteful red grin.
When I am by myself, accidentally bumping into someone on a BART train, I will accept the misattribution of my invisible, visual disability to rudeness, aloofness, self-importance, or full monty aggression. When I am riding BART, I am not representing myself personally or professionally. I do not often feel the abdominal impulse to clear my name or hurry up and get a guide dog already.
When I have been volunteered, by my job, to work a formal fundraising luncheon in an auditorium where I have never been, I feel incalculable pressure to well-represent my professional agency and, in so doing, myself.
For the three hours before my debut as the clueless, bag-toting clumsoid, I worked the registration booth. I had before me a laptop and a placard with recommendations for how to say welcome and enjoy. I cranked open my glasses case and gave the thick lenses a final rubdown. I was ready to roll, ready to represent.
Even in the controlled environment of a sit-down, single-focus task, I fumbled. The worst part about the following embarrassing moments is that I am not entirely certain that everything actually happened. Without the visual confirmation of when precisely people enter and exit a scene, I’m left to rely on deductive principles and high hope that the images I manifest are neither hallucinations nor floaters, ghost-like splotches that often appear in my visual field.
The first embarrassing circumstance was that, while searching the laptop for the accessibility settings, I did not notice that a luncheon guest was standing before me, probably proud of how silently she wore her patience with me. I could tell from her fake smile that her patience was actually wearing her. I do not know how long she had been standing there, or whether she had made do-you-see-this?! eye contact with another guest or volunteer, but I chose to be humiliated rather than consider the probability that she had walked up to the booth at the very moment I happened to look up. Choosing hypervigilance over a squint-free first impression, I did not take another moment to enlarge the cursor or enable the zoom function.
The second embarrassing circumstance was that, when additional double-doors were opened to permit guests to enter from another direction, the high noon light choked out my retinas. I could no longer see, I immediately looked like I was crying, and I felt my eyeballs get skewered to shish kebabs. To make matters worse, I did not muster the confidence to stand up for my own needs. The volunteer sitting next to me, who also works at my agency, noticed immediately and encouraged me to advocate for a seating change.
While I considered the implications of the request, such as whether it would be best to put on prescription sunglasses and stay put (probably not a great hospitality move), the volunteer fetched the attention of my supervisor and requested the seating change for me. Although I seriously caution against this form of patronization, I ultimately appreciated the gesture because I was already tense and worried about having pulled the earlier disability card as well as being misperceived as rude or incompetent.
The third embarrassing circumstance was a set of encounters faced when, after my shift at registration, I was scheduled to join a potential donor table and further represent my agency, with the hopes of inspiring donations. As soon as I sat down, I knocked over my glass. I tried to recover with a slapstick approach to introducing myself, and the moment felt saved. Even though I was very thirsty, I did not attempt to reach for the water pitcher. Even though I was very hungry, I did not attempt to reach for the bread plate. While I ate my chicken salad, I occasionally missed the mark. I imagine that the scene of me eating looked like a sloppy attempt to “accidentally” drop food on my lap so that the dog I had snuck in could eat a meal that day. If I actually had a guide dog, this may have been the case. I then dropped my knife off my plate before deciding I would just rest it on the stupid tablecloth. Oh, and yes, it clattered against my plate. If I had been out with friends, I might have played it off by singing “Part of this world...” and combing my hair with the fork.
While I was “eating” and “inspiring donations,” speakers were touting the organization. I was sitting at a back-corner table and could not see the face or body of the speaker. At one point, guests were prompted to follow a simple set of hand gestures. I attempted to play along but soon realized, based on the participation of the other table guests, that I was again missing the mark. I attempted to play this one off with more slapstick, bellowing “freestyle!” and exaggerating the distance between my gestures and those of the other guests. The donor sponsoring the table laughed, genuinely, but I might not have been so lucky.
Next, guests were instructed to team up with a partner and respond to three prompts posted on projector screens. I could not read the prompts and asked my partner, someone who looked very kind and expensive, to help me. The prompts were related to who you were in high school and challenges you faced. I shared, openly and honestly, that the greatest challenge I faced was adjusting to my Retinitis Pigmentosa diagnosis and progressive vision loss. The woman saw me, and I inhaled into my belly for the first time that day. The woman then shared her story, and I could see her, too. I counted down from this beautiful, extended exhale: 5, 4, 3, 2, 1, then it was time to stand up and grab the red bag.
Rather than rising and walking among the potential donors, I left the auditorium, hung the red bag on the arm of someone holding a walkie-talkie, and made a disproportionately large gesture of needing to use the restroom urgently. If the woman holding the walkie-talkie had been deaf and fluent in ASL, she would have spotted the desperate lie from a mile away. I had to lie, I would sign to her, because I was tired of pretending. I then walked down the staircase and mounted the cement that would carry me back to BART, where hopefully no one would call me a b%^&#. Not today, BART passengers, please not today.
By the way, I had been moved to tears by the speeches of the scholarship recipients, but because I had already been such a flagrantly underperforming volunteer, I hid my emotion. I believe that if, until that moment, I had not perceived myself as standing out so very far, I would have shared with my table who I really was, someone who cared deeply about the organization’s mission and who was proud of and committed to her work for the agency. The first step, it seems to me now, is practicing how to stand out far enough that people have the opportunity to see who else I really am, someone with an invisible, visual disability.
Mercedes Zapata is a doctoral student studying school psychology at the University of California, Berkeley. Her research interest is disability identity development. Mercedes was diagnosed with retinitis pigmentosa at the age of ten and is legally blind.