Using a cane before the end of the world

“Really Hanna? The sunglasses too? Do you really need all that?’ my friend asks me, age 14 and brimming with the shames of puberty and someone who doesn’t want to be seen with the blind girl. 

It’s the spring of 2009, I’m standing with two friends after school on a Friday, we’re in our freshmen year of high school and have never even heard the phrase “alone, together”, let alone considered the possibilities of an impending global health catastrophe in a little over a decade. Swine Flu was yet to infect my younger brother and prevent him from attending his middle school dance and graduation.

This was around the end of the first week of my cane use. After years of fighting accommodations I made the decision to fully embrace the use of a mobility cane somewhat angrily; a radical decision, or what was seen as one by many in my life - my friend included. 

I have a rare genetic condition called Oculocutaneous Albinism. Oculocutaneous Albinism (or OCA for short) reduces pigment and the production of pigment by melatonin in the eyes, skin and hair, and often leads to visual impairment, light sensitivity and other health issues affecting the skin and eyes. OCA is extremely rare and affects somewhere between 1 in 17,000 and 20,000 people worldwide. Because I was born with OCA I have very low vision and fall under the legally blind marker. Albinism affects everyone differently, and for me, it means I can’t drive, read printed texts smaller than 18pt without great difficulty, recognize the faces of my friends, family and loved ones (especially when they’re wearing a mask) and do many things most folks around me can do with ease. I also often get painful migraines from eye strain and am at a higher risk of illness, including skin cancer. 

I can still hear the inflection in her voice and the look on her face; like I was contagious. I had cooties. 

Going through public school, then later, while attending SUNY Purchase to pursue my Bachelors degree in VIsual Art, I received countless comments about how others perceived my body and the attributes and shortcomings they projected onto it. Though I don’t always present as a person with Albinism to those who aren’t in the know, I still am asked questions like “what’s wrong with your eyes” and “where are you from? you look strange”, well into adulthood. I can’t blame my friend or the folks who ask me questions like these. I usually am the first person with any sort of visual impairment as significant as mine that any given person I know has ever met. Certainly, I’m probably the only person with albinism the majority of people I have ever met know, whether they realize it or not. This ignorance and unintentional ableism is a result of systems that suppress the sharing of experiences like mine and others who are in any way marginalized. And, for this reason, I angrily opted to use a white cane. 

In 2009, at the onset of High School, I carried a lot of anger and confusion. I was the only person I knew like me. Not only was I the only legally blind person I knew, other than a girl I had “special ed” with who was completely blind, but I also was beginning to feel that other labels given to me by the world at large didn’t quite fit. My mother was Jewish, though it was an uphill battle begging my atheist goy father to let me get Bat Mitzvahed. I also was beginning to realize that I wasn’t quite straight, or gay, or feminine. It felt like I had to choose an identity, because I could only be one. Also, being placed into a class, antiquatedly dubbed “special ed” certainly didn’t do my classmates and I any favors as far as assimilation goes. 

Standing there in 2009, confused, feeling like I had been slapped, I collapsed my cane and took off my shades.

Later that year, in the fall of my sophomore year of high school, I got eye surgery to correct strabismus; a condition where ones’ eyes don’t align. This surgery left my eyes bloody and turned outward for several months. This was an extremely stressful time for me. I stopped using my cane as it attracted too much attention and I desperately wanted to fly under the radar. Constantly wearing sunglasses and leaving class to administer prescription eye drops didn’t exactly help me blend it. The amount of unwanted comments I received from peers was staggering. I stopped going to class and using accommodations. Naturally, my grades began to slip, which only led me to act out more. Clearly I couldn’t win. I wasn’t “blind enough” to use a cane, or “sighted enough” to pass as an able-bodied person. I didn’t even consider other ways of using my cane that would be helpful, as it felt like I had to commit - all or nothing.

When I think about my sight and how it connects me to the world around me I often think about space. I have no depth perception and am usually unable to see the region below my nose; a blind spot. I think about space as a construct. Every space we enter is a built environment. Whether it’s a physically built building, with or without a ramp and ADA compliant signage, or a home affixed with adaptive technology. Space for me goes through a compression. It’s flat, but expanded. The society-first world we occupy assumes that space is uniform and that we get what we get and we don’t get upset. I’m realizing that’s simply not good enough. What if space can be more? What if we built space for those who differ? Who needs something we maybe couldn’t anticipate, or that we ourselves don’t need?

As I matured and began going to shows, parties and galleries in the city, I realized that something had to give. I think others saw it too. I maybe came off rude to many people who didn’t realize I couldn’t recognize them or see something, like if they were before me on a line, or that I needed to go close to something to be able to read it. In trying to pass I was setting myself up for failure. 

My first ever experience using a cane as an adult successfully was ten days before lockdown. On March 4th, 2020 my friend and I went to see touring New Orleans punk band Special Interest, and local bands Dreamcrusher, L.O.T.I.O.N., and Terrorist at St. Vitus- a venue in Greenpoint, Brooklyn. After many weeks of consideration, as well as years of frustrating experiences navigating spaces at night and nasty falls, I decided that it was time to try using a cane.

I chose the show at St. Vitus because I had been there before and knew the bands who were playing, with the exception of Terrorist.  I could go out not needing to scout out the bathroom, bar, exit, seating, merch table. 

We got there late from work. Having discussed my plan, I timed it so that we both arrived at the same time so we could walk in together. I was terrified. What if I got confronted? What if I was told I’m faking my blindness and didn’t need a cane? That I don’t look  blind”. What if someone tried to make me leave? Of course, none of that happened. My friend and I had a great night and saw good music. Everyone was nice to me, many nicer than strangers usually are. 

I think that people generally want to understand, though they’re not always given the tools for empathy and openness that we might hope they’d come to naturally. I’ve been going to shows in the city since 2009, though for many years I didn’t use accessibility tools whatsoever, not even glasses. I felt that doing so would compromise my cover as a person allowed through the door. Though the pandemic and subsequent lockdown has limited the number of opportunities I have to explore the new, expansive social spaces I can occupy and explore with my cane, the experiences of accommodating myself and being seen for who I really am, plus the validation, was necessary. The blowback I had received from my peers was so intense, that I felt I had to protect my true self.  I wish I had the roll models that exist today for young folks who have blindness, as well as within the disability community at large. The forced social isolation of 2020 has led me to countless talented young creators and advocates on tik tok, instagram and twitter, which has been a blessing. The experience of using my cane IRL, then seeking out and finding others who also use canes and accessibility tools URL has been the weird silver lining of a year where so many folks are beginning to wake up to systems of oppression, racism, bigotry and ableism. At the risk of sounding overly saccharine, I hope the future continues to demonstrate how adaptive and open people are able to be, and the many ways one can be a person. 

It must be acknowledged that my experience depicted in this article is one of privilege. Not only am I white and cis-het passing for the most part, but I pass as someone who doesn’t have albinism. I also had the luxury of choosing to use my cane. If you take anything from this article, please consider the ways that you can make the spaces you occupy more accessible and equitable for everyone, regardless of race, ability, income, housing status, or any intersection one may occupy within systems of oppression. 

This article was written for and featured in the Winter 2020 edition of InSight Magazine; a publication exploring the multifaceted experiences of people with albinism.