By Mariagrazia Buttitta
July 21, 2021
Tip-tap, tip-tap, tip-tap. It’s a typical day for me with my shades and my white cane Casper (named after the friendly ghost.) My lovely mother and I head to the grocery store, one of the many errands planned for the day. But how can simple errands suddenly become so . . . adventurous? To explain, I will take you inside my life—Mariagrazia’s life—and pull down my black shades to tell you about my journey with blindness, specifically, cone dystrophy.
If puberty wasn’t stressful enough, on my fourteenth birthday, I was diagnosed with cone dystrophy. It felt like my heart stopped beating for an entire minute, and my entire life became an instant blur. Racing thoughts followed: What does this mean? Can I live a normal life? Is this a joke? I stumbled over the words: le . . . leg . . . lega . . . what? I am legally blind? I finally said it as fast as my mouth could move without taking a breath. Then I exhaled with exhaustion and giggled like a nervous wreck. At that moment, I could not see past my diagnosis. I had never met another blind or visually impaired person, and neither I nor my parents knew anything about cone dystrophy. So, like most unfamiliar things, it was initially terrifying.
In the coming years, my biggest barrier wouldn’t be my diagnosis; it would be society. We live in a world where much of our understanding is categorized by all-or-nothing thinking. As a result, trying to navigate the world while explaining my blindness was exhausting, frustrating, and complicated.
But before taking on that world and trying to educate it about cone dystrophy and blindness, my mother and I first had to learn much more about the condition. I focused my energy on consulting credible scientific resources and was amazed to learn my first fact: according to the National Organization for Rare Disorders, cone dystrophy affects approximately one in 30,000 people in the United States. I discovered that I had a greater chance of getting hit by lightning than getting cone dystrophy. Lucky me! But before diving into Blindness 101, allow me to explain how cone dystrophy has manifested itself in me.
First, cone dystrophy causes me to experience the following symptoms: photophobia (sensitivity to light), color deficiency, and nystagmus (involuntary quick eye movement). I am considered legally blind, meaning I have a visual acuity of 20/200 or less in dim light. That may sound straightforward and, in many ways, it is. But, in other ways, it isn’t. My eyes never seem to see something or someone the same way. I particularly find myself overwhelmed in new environments because my brain is trying to signal and process all the new information at once. The sun or bright light (indoor or outdoor) is uncomfortable and painful at times. For me, repetition is key, but dim light also plays a huge role in helping me distinguish my surroundings and navigate more comfortably.
Like most people, sighted or not, I have good days and bad days. What I have found most upsetting over the years is when people question my status as legally blind because I can see some things at certain times but not at others. Not fitting into society’s expectations of an individual who is blind has made my life even more challenging.
To help you avoid judging people too quickly, let me explain blindness in a nutshell. There are different stages of blindness, and no two people experience it the same way. The term “blindness” is also confusing for many people because they already have a preconceived notion of what blindness is and what it looks like. People hear “blindness,” and they think it means an individual who sees only pitch black, doesn’t look directly at them, wears black shades, and walks with a white cane or a seeing eye dog. However, blindness is often used as an umbrella term to include many vision impairments, including mine.
For example, the American Foundation for the Blind uses a wide range of terms, such as low vision, visually impaired, or legally blind. But despite the vast amount of knowledge that exists, people still question my experience with blindness. Some even believe I might be faking my eye condition because I don’t fit their definition of how a blind person should look. Unfortunately, I often find myself experiencing incidents like the following:
Incident 1: A lady taps me on the shoulder and says, “My ninety-eight-year-old uncle is blind. God bless his soul, and God bless you. I will pray for you.” Hmmm. Thank you . . . I guess? But what exactly is she praying for?
Incident 2: My Mom: “Honey, can you get the bread while I look in the meat department.”
Me: “Of course.”
Man: “Hey, how did you know exactly where the bread was? Can you see?”
Me:“No, I’m legally blind, but I have shopped this grocery store a million times, and they
haven’t changed the location of the bread.”
Man: “Oh, so what can you see? How many fingers am I holding up?”
I didn’t ask for an eye exam inside the grocery store. People have a way of making you feel like you’re faking, but believe me, being legally blind is not in fashion.
Incident 3: Little kid: “Wow! What’s that thing she’s holding?” Father grabs his son, and they run off. Maybe there was a ghost behind me. Don’t be afraid to educate your children about people with vision impairments.
Incident 4: Cashier: “Cool sunglasses! It’s pretty dark in here; no wonder you can’t see.” No comment.
Incident 5: As I walk out of the grocery store, someone yells, “You have a nice day!” Wow, my poor eardrums hurt. And not only have I gone grocery shopping but I have also acquired a slight headache, so now I need to visit CVS.
I have added some comical flourishes to these incidents, but these are my experiences and people’s comments get tiring. There is not a place where or a day when someone doesn’t question me, ask me to remove my sunglasses indoors, comfort me, or even try to find a cure for me. Everyone seems to know an ophthalmologist who can fix my vision impairment. But individuals like me who are legally blind or who have other types of vision loss don’t need to be fixed. We need to be understood and treated like everyone else because we belong in society too.
So, the next time you encounter someone with a white cane or shades, and you have questions, take a deep breath and think about what you want to ask. Please do not yell, offer comfort, or grab someone when he or she is crossing the street (actually, do not grab anyone, period). And as for your questions about how much the person can see and if he or she is really blind, please leave those at home. Finally, I am constantly asked if being born this way or not being completely blind makes blindness any easier. The answer is no. Although I have been legally blind my entire life, none of it has become easier. Instead, I have become a better advocate for myself while committing myself to educate others. I live with a condition that currently has no treatment or cure, but every day, I take a step forward and do my best to manage it. How? By loving and accepting myself as I am; surrounding myself with people who love me as I am, which include my family, friends, and my four-legged best friend, a Shih Tzu named Happy; and by practicing self-care and seeking professional help when needed.
I leave you with these final thoughts: no matter what you go through in life and what people think of you, be proud of your differences. Embrace them! #embracingyourdifferences
Mariagrazia Buttitta, MA, NCC
Author ∙ Motivational Speaker ∙ Advocate
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