Changing How People Perceive Blindness

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

Sincerely,

Mariagrazia Buttitta, MA, NCC

Author ∙ Motivational Speaker ∙ Advocate

Follow Mariagrazia on
Twitter: @eyeonacure
Instagram: @embracingdifferenceseyeonacure
or @mariagrazia.buttitta

Facebook: facebook.com/embracingyourdifferences
LinkedIn: https://www.linkedin.com/in/mariagraziabuttitta/

Book Mariagrazia for your next event: embracingdifferences01@gmail.com

Copyright © 2021 Embracing Your Differences, All rights reserved.

My Journey through Blindness and the Eye2Eye Peer Support Program


Image Retrieved from the Eye2Eye Peer Support Program.

By Mariagrazia Buttitta

December 23, 2020

By the time I was four years old, my tiny face was already glued to my oversized pink frame glasses that did nothing to help me see the world clearer. Instead, they left me feeling confused while my parents and teachers were puzzled and concerned about me. I fell everywhere and always ran over things. I hated the idea of going up and down steps because I would always stumble and fall. One day after school, my mother waved at me, but I never responded because I couldn’t see her standing two feet away from me. This was only the beginning of what was to come over the next few years: countless doctor’s appointments and a never-ending list of inaccurate mental and physical diagnoses. As a child, I spent more days in the doctor’s office than I did on playgrounds—or at least that’s what it felt like.

As my childhood and early adolescent years went by, my parents remained determined to find answers. Meanwhile. I had no choice but to carry on, struggling academically, getting bullied, and hating every aspect of my life. The “why me” refrain suddenly became my life’s anthem. I envied girls my age who were focused on dating and looking forward to obtaining their driver’s licenses. Despite these challenges, I was surrounded by love—my wonderful family loved me as I was. As my mother always said, I was perfect in her eyes. No diagnosis would ever change her unconditional love for me, and I’d always be the same beautiful girl inside and out.

Still, nothing could prepare us for what was to come on my fourteenth birthday. Two words—cone dystrophy—would simultaneously change and define my life and my parents’ lives forever. For a while, it was a constant battle between me on one side of the ring and my opponent, cone dystrophy, on the other side. Cone dystrophy affects approximately one in 30,000 people in the United States alone, according to the National Organization for Rare Disorders. My teenage life became a quest to beat this powerful opponent. But before I could step out of the boxing ring, declare victory, and take-home a “ring belt” and championship, I first had to learn much more about this disorder. 

Thankfully, the internet makes it extremely easy to access information in a matter of clicks, and there are a lot of credible resources out there that explain cone dystrophy in-depth. But as with any disorder, everyone’s experience is different. So rather than explain things from a biological or technical viewpoint, I would rather give you a quick glimpse of how cone dystrophy affects my day-to-day life. First, please remember that blindness is an umbrella term that encompasses different types and levels of blindness. Simply stated, blindness and vision loss is a bit complex; it’s not always about seeing the world from a black or white perspective. 

The easiest way to explain cone dystrophy is to ask you, the reader, to find a quiet, dim space and close your eyes for about one minute. Then, walk into a bright room or even stare out the window. What do you see? Similarly, cone dystrophy causes me to feel constantly overwhelmed by light. I experience something called photophobia, which is sensitivity to light. That is why I need to wear sunglasses almost all the time. Also, the colors around me are confusing pink can seem to be white, and green can look like blue. They all look similar. When I try to focus on something for too long, I experience a constant shaking of the eye called nystagmus. I am considered legally blind, meaning that I have a visual acuity of at least 20/200 in dim light. I also walk around with a long white cane—which I named Casper (like the friendly ghost)—because my eyes never seem to discern things completely or in the same way. Faces are not always clear, and details are difficult to process all at once. Everything takes time, but my experience varies depending on the light and the environment. So, for good measure, Casper is always beside me. Repetition is key: it takes a while to learn my surroundings.

After moving to New Jersey at the age of twenty-one and joining the Commission for the Blind and Visually Impaired, I was able to learn new skills and eventually face one of my all-time biggest fears: attending college. But I did it. I got straight A’s and learned to be content and independent. There are a lot of things I am grateful for, and I am proud of what I have accomplished, including earning a Master of Arts in clinical mental health counseling from The College of New Jersey and becoming a National Certified Counselor (NCC). I am also an author, a motivational speaker, a wellness and health enthusiast, and a passionate mental health and disability advocate. I am no longer just a statistic; I am living my life authentically with no limitations other than the ones I put on myself or allow others to put on me. Even though life is not always crystal clear, I have learned that through determination, love, and professional support, I can accomplish anything I set my mind to.

Most important, I have learned to accept this disorder, and I wouldn’t change my situation for the world. I wouldn’t be the person I am without cone dystrophy, so it does define me in a lot of ways, but mostly in positive ones. Each day I learn something new, and I am still a work in progress. But my main message is this: After accepting the person I was meant to be, I started living life to the fullest. I love hiking, spending quality time with my mother, playing with my four-legged friend, Happy, riding my bike, writing, working, cooking, baking, going to the beach, traveling, exercising, and embarking on life’s adventures.

If you want to learn more about my journey—my experience growing up in Sicily, moving to New Jersey, and learning to treat cone dystrophy not as my opponent but as something that motivates me to thrive and be successful—then go ahead and get a copy of my memoir, Now I See: How I Battled Blindness, Mental Illness, an Espresso Habit and Lived to Tell the Tale. It is available in multiple book formats, including paperback, e-book, and audiobook.

To this day, people have numerous questions about my eye condition. People are curious, but sometimes their curiosity leads them to make quick assumptions about blindness in general. It’s okay to ask questions, but what is not okay is (1) making assumptions and (2) asking the wrong questions at the wrong time. For instance, people I have never met in my life constantly ask me these questions:

Were you born this way? How much can you really see? Do you wish you had full sight? Is life hard? Why do you wear sunglasses indoors? IS YOUR HEARING BETTER (as they speak slower and louder to me)? Can you drive? Can you text and live a normal life?

And the list goes on and on. I do feel like a celebrity at times because my eye condition always seems to spark a conversation in public. So, as you can see, I have a lot more work and education to do. But, thankfully, I am not alone. There are so many great organizations out there that educate and provide resources for individuals like me as well as for their families. In fact, during the COVID-19 pandemic, I came across an opportunity that would allow me to fulfill my desire and mission to educate and help others like me. I am fortunate to have landed a position as a Peer Support Specialist for the Eye2Eye Peer Support Program. This one-of-a-kind program assists blind and visually impaired individuals and their families all from the comfort of their homes through phone-based peer support.

My role at Eye2Eye Peer Support is to not only assist and listen to our callers but also market and help spread awareness about blindness and low vision and make sure individuals and their families are aware of this service through outreach efforts. Let’s face it—blindness is one of the most difficult disabilities to deal with. There is so much stigma and uncertainty surrounding blindness and low vision, and individuals and their families may find themselves unsure about what the future holds, similar to my story. Being able to connect with peers who are also blind and visually impaired is what makes this process unique and therapeutic. Currently, there are not many phone-based programs offering information, support, resources, and referrals to assist individuals with managing challenges and celebrating victories.

But look no further; contact the Eye2Eye Peer Support Program, and let Us help

You.

See the world a bit clearer.


About Mariagrazia Buttitta

A native Sicilian-Italian speaker, Mariagrazia Buttitta is a National Certified Counselor (NCC), an author, a motivational speaker, a wellness and health enthusiast, and a passionate mental health and disability advocate. Mariagrazia holds a master’s degree in Arts in Counseling: Clinical Mental Health Counseling from The College of New Jersey. Mariagrazia — the author of, Now I See: How I Battled Blindness, Mental Illness, an Espresso Habit and Lived to Tell the Talehas also been featured on the Huffington PostMediumWriters Digest, and Counseling Today (a publication of the American Counseling Association), to name only a few outlets. Mariagrazia is a tireless advocate who regularly educates and speaks to college students and organizations about her blindness and her long-term battle with depression and anxiety. Learn more about Mariagrazia by visiting, www.embracingyourdifferences.com

Follow Mariagrazia on
Twitter: @eyeonacure
Instagram: @embracingdifferenceseyeonacure
or @mariagrazia.buttitta

Facebook: facebook.com/embracingyourdifferences
YouTube: Mariagrazia Buttitta


About the Eye2Eye Peer Support Program

Mission Statement: “To provide an easily accessible, community-centered peer support, phone-based resource program that will assist people in coping with the demands of adjusting to vision loss.”

Eye2Eye is a free, phone-based, peer support program, designed to assist individuals who are blind or visually impaired.  

  • Emotional support
  • Referrals
  • Assessments of needs and wellbeing
  • Community outreach
  • Information and resources
  • Services for families and loved ones
  • And much more …

Eye2Eye focuses on the shared experience of vision loss as a powerful tool for connection, emotional support, and personal growth. Callers will be matched with trained peer support specialists who are also blind or visually impaired.

Eye2Eye is here to help build resilience, navigate the challenges of vision loss and celebrate victories one step at a time.

Learn more at www.shp.rutgers.edu/eye2eye

If you or someone is overwhelmed by vision loss, please look no further, and get in touch with the Eye2Eye Peer Support Program for further assistance.

Contact:

Phone: (833) 932-3931

E-mail: eye2eye@ubhc.rutgers.edu


Follow Eye2Eye on Facebook and Twitter and become a part of our community.


As Scott Hamilton once stated, “the only disability in life is a bad attitude.”


Thank you for reading.

Sincerely,

Mariagrazia Buttitta

Copyright © 2020 Embracing Your Differences, All rights reserved. 

We Can all Use a Break Sometimes . . . and That’s Okay, Too!

stop-and-smell-the-roses

The past couple of months, my world has been somewhat isolating as I have worked diligently on achieving life goals, moving way too quickly to even stop and celebrate the small accomplishments.

I have worked on my memoir, beginning with the pre-order process, marketing, and trying to get the attention of eye manufactures regarding my (Your Sunglasses Selfie Project) also known as the #eye4acure campaign. All of this while also being a full-time graduate student in clinical mental health counseling, a good friend, a sister, a daughter, an aunt, a doggy mommy, and a good role model—Yikes!

But let’s face it, my constant need to get everything done, to be productive, successful, and “make the world a better place”—has made me feel less of a superwoman and more like a cripple, as I feel I am running on empty.

I can run faster than a furious tornado all I want, but eventually, my mind and body will let me know I may have had about enough.  And burning the “candle on both ends” is only going to slow me down.

Therefore, it’s time I check in with my mental health and take it easy on myself because that’s as important as my physical health.

It’s time perhaps, to “stop and smell the roses,” which is easier said than done. I know…

I have to remind myself that it’s okay to take a break and make time for the things and people I love the most.  Like these things (to mention a few:)

  • Meditate
  • Go on hikes
  • Exercise
  • Spend time with family, friends, and my two four-legged children (Lucky and Happy)
  • Treat myself to a nice meal or glass of wine (or two) shhhh….
  • Disconnect from social media
  • And indulge on my espresso habit

The most important thing on this planet is to make sure we do not get pulled by lives fast pace momentum and allow ourselves to enjoy our journey as much as we can.

I would love to hear what you like to do for fun or while taking a quick break?

Post on my FaceBook page at: embracing your differences

Remember to step back and take a break! And most importantlyremember to, “STOP AND SMELL THE ROSES.”

Tomorrow is a new day to start over and start fresh.

Just breathe.

…………

Happy Holidays from:

Embracing Your Differences

Copyright © 2016 Embracing Your Differences, All rights reserved.