ASPECT Stories

During my legal career, I have been both an attorney and a judge.  As an attorney, I developed many personal tools to navigate successfully with my visual impairment.  If I was aware in advance that I had to read in open court, I would prepare to read.  If it was case numbers, I would write them very large on my pad and read from my pad instead of the calendar distributed by the court in significantly smaller print which I could only read from about six inches from my face.  If it was an argument for a case and I did not know it or memorize it, I would write notes largely on a pad.  Through the years I learned how to determine when and how I needed to prepare to deliver oral information to avoid reading small print.

I feel like when I look down to read, I lose credibility because suddenly instead of listening to what is said the focus shifts to why is she reading so closely.  People sometimes seem to act like there is a nexus between vision and intellectual ability.  I have experienced being treated differently, as if my legal blindness means I must not be intelligent.  I sense this because I am then approached at least initially with the universal reaction to any disability, speaking slowly, softly and using simple words.

As an attorney seeing people’s faces was never a true concern.  Other communication such as tone of voice and actual words used helped guide me.  I could never see the details of the judge’s face either.  So, I am sure there were times when the judges face said stop and I continued to push an argument that was not favorable in the court’s opinion.  The most humiliating incident I remember in court was after I allowed myself to be vulnerable by sharing my visual impairment to improve my work.  I approached a judge in rural Harolson County, Georgia, which was not welcoming to outsiders and certainly not me.  During a hearing, I cited a statute, and the judge specifically asked me to read it out loud with knowledge of my visual impairment and a copy of the code book the statute came from in his possession.  As I lifted the book and tried to read from a distance that people with perfect vision read from, I was quickly forced to bring the book within six to eight inches of my eyes.  This situation really bothered me.  Nothing is more sensitive to me on a personal level than my eyesight and skin tone.  Most of the time when I am reading in public, I don’t realize how closely I am looking at something or that my eyes and head may be moving due to my nystagmus.  It’s not until I see myself in a picture or video that I realize how close I am to what I am looking at.  I would never jeopardize a client or anyone before me in court because I cannot read something.  I will do what I must do to read the material.

The responsibility and view from the bench are different from the attorney table, you are responsibility for considering everyone, not just your client.  What I quickly discovered while on the bench is I could not see any details of anyone’s face.  The numbers and names on the court calendar were very small.  Thankfully, I purchased an adaptive device to enlarge print that also has a magnifier which when turned away allows you to view people and things in front of you.  When the camera is turned outward, everything and everyone in the courtroom was in view.  There was as much communication nonverbally as there was verbally and inappropriate acts.  Without my adaptive device, I referred to people in the court room by the wrong gender because I could not see them.  Each time I go to court, I take my 20-30 lb. device off my desk, place it in a rolling cart, roll it to the courtroom, take it out, plug it up, listen to it beep four loud times as it turns on and point it in the direction needed to allow me to see from the bench.  Each time I bring it into the courtroom, I know people wonder what it is, a few have asked, and those close to me figured it out.  I simply tell them it helps me see better.  I did not realize how much there is to take note of from the bench.  My device makes things tremendously clearer.

I am grateful for my time on the bench and more grateful to have a clear view.

Rosalind Isom

Beep, beep, beep! It’s a little past 5:00 a.m. every morning when the sound of my alarm clock rings. I jump out of bed and get ready to start my workday—but not before eating a nutritional breakfast and indulging in five to six shots of espresso (let’s leave my espresso addiction for another article). I eventually grab my white cane called Casper and then throw on my shades. Now I’m ready for my workday as a full-time Career Coach at Monmouth University!

At the age of 14, I was diagnosed with a rare eye condition called cone dystrophy, so the idea of being independent in the workplace and living a fulfilling life was something I never expected. I mean, how could someone who is legally blind navigate this sighted world? Most important, what employer would hire me? Would my colleagues see me as worthy and capable? Could I ever compete with my sighted colleagues?

As you can see, my mind was fixated on the many whys. However, upon joining the New Jersey Commission for the Blind and Visually Impaired (NJCBVI) and learning about all of the assistive technology and resources available for those of us who are blind and visually impaired, I soon realized that my only true limitation wasn’t my lack of sight but my negative self-perceptions. By learning about assistive technology and changing my negative views of myself, I began to navigate the sighted world like a champ.

So how do I do it? Before telling you about the amazing technology I use in my workspace, allow me to explain a little about cone dystrophy. Cone dystrophy is a disease that affects the cone cells in the retina, which is the portion of the eye that helps us see in bright conditions. Because of a defect in my cones, the world I see is blurry. Furthermore, I experience day blindness, color blindness, photophobia (sensitivity to light), nystagmus (shaking of the eye), and low vision (approximately 20/200 in dim light). Despite the limitations in my vision, I am still able to complete a successful workday by using the following:

Access Link and Ride Assistance

• I use Access Link which is a NJ Transit’s public service transportation designed for individuals with disabilities and who may not access the regular fixed-route bus service.
• Furthermore, my parents assist me by driving me to and from the Access Link pick-up and drop-off area (unfortunately, Access Link is out of my service area where I currently reside).
• My mother and I work close by, so whenever our schedules align, I can commute with her to and from work.

The White Cane, Casper

• Casper allows me to be confident while navigating campus. I know my office space inside and out, and I can easily get around with no hesitation. Also, the white cane indicates to others that I am blind or have low vision.

JAWS the Screen Reader

• My office computer is equipped with JAWS which is a screen reader. In addition, I use screen magnification, large fonts, and a dim screen. Because of these software and adjustments, I can do my work without any issues. If my eyes do get fatigued, then I make sure to take extra breaks.

Sunglasses and a Dim Space

• I wear sunglasses, and my coworkers understand and never make me feel bad about wearing them.
• The lights in my office are dimmed. We added extra curtains to block the light from the windows.

The Support of My Colleagues and My Students

• I feel so fortunate to have a team that accepts me for who I am. They are always willing to help, whether it’s showing me a new location, accommodating my blindness, or being flexible with my transportation needs. No matter what, I know I can always count on them.
• I love working with my students, they never focus on my blindness, they trust my expertise, and are very accepting. If they have questions, I make sure to address them or I let them know my limitations. But this does not phase them one bit.

As you can see, loving your work is half the battle. You must also find a workplace that embraces your diversity and accepts you as you are. I am incredibly grateful for the wonderful team I have at Monmouth University.

The bottom line is, yes, I can have a successful work life and thrive despite my blindness. However, I first had to learn to accept myself, love myself as I am, and see myself as having value. I’ve come to realize that people are more accepting of my differences than I thought they would be. The most important thing I learned is that one must learn to advocate and speak up. Your coworkers and boss may not always know what you need so educating your team and verbalizing your needs, will make the process much easier. Of course, it can sometimes be a trial and error, but with a great team around you, everyone starts adapting.

Nothing about navigating the sighted world is easy. It takes hard work, dedication, determination, and advocacy. But cone dystrophy has been a true blessing in my life. It’s shaped the person I am. I’ve become resilient, strong-willed, and a go-getter. Don’t get me wrong; I dream of the day when I, too, can roll down the windows of a brand-new Lamborghini and ride in style (OK, maybe a Mercedes would be fine, too). But for now, I am choosing to navigate in style with Casper the Cane and my cool shades. I know that I have the love and support of my colleagues, friends, dogs, parents, and therapist. I am blessed to have a strong support system in place both at work and outside of work. It keeps me sane. Learn more about my journey or stay connected by visiting my website, embracingyourdifferences.com.

With gratitude,

Mariagrazia Buttitta, MA, NCC
Career Coach | Author | Motivational Speaker | Advocate
#raisingawarenessaboutconedystrophy

Imagine if the work you do for eight or more hours a day causes you pain.

All day I stare at three large computer monitors.  It’s a love-hate relationship.  I have Thyroid Eye Disease which causes light sensitivity, headaches and dry eyes.

I am fortunate to work from my home office with my amazing husband about four feet away from me.  Together we have hacked our office so working is tolerable.  I love what I do, but light causes pain.  Blinds closed on the windows, overhead lights dimmed, monitor brightness turned down, eye drops at the ready – those are just a few of the adjustments that have helped.  I also wear a visor to keep even the dimmed lights out of my eyes.  Goofy looking?  Yes!  But it helps a lot.

We have approached reducing my discomfort with trial and error and lots of humor.  Until there is a cure, I can work around Thyroid Eye Disease and it won’t stop me.

Vicki Grant

Trauma and Technology

I swiped the fog from the bathroom mirror and touched the place where my face should have been. The little hairs on the back of my neck prickled. I could not see my own face. A rare eye disease has rendered me totally blind.

A silent scream slammed through me, “Oh, my God. My God. Why have you led me into this dark wilderness?”

Would I’d never see my 4-year-old daughter as a grown woman; nor my 11- and 9-year-old sons star on their high school volleyball teams; nor if there were new wrinkles on my husband’s face?

“Why have you forsaken me?” the silent scream continued.

I was teaching in the Teddy Bear Trail Nursery School when the proverbial chalk board crashed down on me. Was I being erased? Would I lose my class?

When I didn’t return to the nursery school, the children thought I’d died. So, I took my new long, white cane and talking watch into show them. I found that talking frankly with the children might be a way to begin to heal and still continue my teaching career.

The workshop “Feely Cans and Sniffy Jars” that I developed, takes blind awareness beyond just identification and into appreciation of a blind person’s abilities. My dynamic, creative and knowledgeable presentation leaves audiences young and old, large and small with new vision long after the applause has faded.

I opened my home with a “Study Buddy Program” to tutor elementary children in reading and math. More new memories were forged on the days I donned my reflective aviator lenses, harnessed up my guide dog, and strode into the local elementary school to mentor students.

One morning, I sat at a low table in the media center with two 1st graders. They had finished computing the math equations on paper, in their heads, and were checking their answers with my talking calculator. Freddie suddenly blurted out, “Hey! You got eyeballs in there?” After assuring him I did indeed have eyeballs in there, that they just didn’t work properly, he was satisfied and went back to work on his math.

The screen reader on my computer enabled me to become the author of three children’s books: “The Night Search”, “Charles and David”, “Green Trillium”; maintain a blog; as well as being a newspaper columnist for 15 years; free-lance writer, and tutor.

Throughout my journey, I haven’t been alone. Life is different, but not impossible with fun, faith, and fellowship. Each time I hug my grown children I know how beautiful and loving my daughter is and that my sons are men of confidence, compassion and intelligence, as well as a lot taller than I am. When I hear “Hey, Mimi!” and feel my guide dog wiggle and waggle all over, I brace myself as I know one of my nine grandchildren is about to jump into my arms for hugs and kisses. I love to pat my husband’s bald pate and trace the new wrinkles on his face, but we’ll be celebrating our 53rd Wedding Anniversary on August 15, 2023, and he still feels great to me.

My teaching career continues by using the OCR scanner, Dell laptop with the NVDA screen reading application, and Foxfire internet with Verizon for e-mail and ZOOM, along with Braille notes. The world is my classroom!

Loving your eyes at work, is so very important to me, because having vision in the work place is the very essence of who you are and the quality of your work,  you can produce with vision. I know from experience, do to the fact I lost my vision while employed. No one in the company offered any accommodations, and my immediate supervisor suggested that I quit working, and I refused. Companies definitely need to put training in place, starting with Human Resources who should no the difference between vision issues and vision crisis.

As a recently retired healthcare leader in Louisiana, the Medicaid Executive Director, I must confess that eye health is not a priority in workplace.  Honestly, I only recognized the importance of eye health in the workplace several years ago when I was diagnosed with glaucoma.  Glaucoma, a condition that affects vision and can change throughout the day due to various factors, serves as a powerful reminder of how vital it is to prioritize eye health.  Navigating these vision issues while striving to maintain productivity is undoubtedly a formidable task.  It underscores the need for increased awareness of eye health, not only among healthcare professionals but across all industries.  It’s essential for employers and colleagues to be understanding and accommodating, providing the necessary support and adjustments to create a more inclusive and accessible work environment for individuals dealing with eye health challenges.

Employers and employees should serve as a catalyst for change, encouraging others to prioritize eye health and fostering a workplace culture that values and accommodates the diverse needs of its employees. It’s crucial for both employers and employees to recognize that eye health is not only about vision but also about overall well-being and productivity.

It’s true that sight is frequently taken for granted until issues arise, as my personal experience illustrates. I am demanding a call to action, using the heartfelt Southern expression, “Bless your hearts,” emphasizes the need to stop foolish behavior of overlooking this vital aspect of health.  Promoting eye health in the workplace is not only about individual well-being but also about creating a healthier, more productive workplace.

Now, let’s GEAUX and call to action “Love your Eyes in the Workplace” promote healthier eyes among employees.  Practical steps below are a fantastic starting point to foster a workplace environment that prioritizes eye health and overall well-being:

• Appropriate breaks from screen time: Encourage employees to take regular breaks from screens, allowing their eyes to rest and prevent digital eye strain.
• Blinking more often: Remind employees to blink consciously, as frequent blinking helps keep the eyes moist and reduces dryness.
• Keeping eyes moist: Encourage the use of lubricating eye drops when needed, especially for those who spend extended periods in front of screens.
• Wearing eye protection: Provide and promote the use of appropriate eye protection, especially in jobs that involve potential eye hazards.
• Appropriate placement of work area for lighting: Ensure that workstations have proper lighting to reduce eye strain. Avoid glare and provide adjustable lighting options when possible.
• Educating others about the importance of eye health Conduct workshops, seminars, or distribute informational materials to raise awareness about the significance of eye health and how to maintain it.

By implementing these measures and actively promoting eye health in the work place, employers and employees can work together to create a safer and more eye-friendly work environment. It’s a call to action that not only benefits individuals but also contributes to a more productive and healthier workplace.

Love Your Eyes at Work

Kevin Frick

I grew up in the 1980’s and got my first classes sometime in 1981 or 1982—that was middle school for me. The era was one in which kids would call each other “four eyes.” In addition, for quite some time, my parents insisted on only plastic frames and glass lenses. As my nearsightedness grew rapidly worse, the lenses grew thicker and thicker and the heavier glasses slid down my nose. I was a self-conscious teenager. While I understood the functionality of glasses and how they were needed for my academic success, I saw them otherwise as an annoyance. I had played soccer (in days when heading in middle and high school was a thing), but glasses made heading difficult. I switched to running and needed to purchase (and keep track of) something to hold my glasses in place while I circled the track or ran cross country. So, I had an uneasy relationship with my glasses at that time.

If we move ahead more than 20 years, and I was, at the time, a parent of three boys and in my 30s. Over the years, I’d developed a relationship with a single optometrist whom my wife and I continue to see on a near-yearly basis. I was buying glasses with thinner frames and thinner lenses. While I would not have called my glasses at the time stylish, the relationship I had with glasses was more favorable. When I started running again to improve my physical health, my relationship with glasses became a little uneasy again, and I made the journey to contact lenses. Over the years, I moved to daily disposable lenses.  For a while, I had one pair of glasses and my contact lenses and that was all I had to manage. My relationship with refractive error correction was again on good terms.

Between getting my first pair of contact lenses and today, my relationship with glasses has continued to evolve as a result of the onset of presbyopia which led to the need for what are often called “reading glasses” but should really be called “near task glasses” because they are truly needed for everything that is a near task. Sometimes that is reading. Sometimes that is seeing a detail on a piece of a colleague’s jewelry or outfit that they wish to share with me. Sometimes that is seeing a detail on my plate at lunch or dinner with one colleague or at a conference. However, the new positive and productive relationship with a pair of reading glasses was not always so easy.

When I first needed reading glasses I was, again, self-conscious. The transition to contact lenses in my 30’s had been long in coming but had finally given me what I thought was the choice forever of only wearing glasses when I wanted to. The need for reading glasses was a return to wearing glasses because I needed to. At first, I resisted and only wore them when I really needed them—I could still squint out what was on my computer screen in a pinch. The problem with that approach—headaches at the end of the day on which I should have otherwise felt good about teaching, research, meeting with students, and committee work in my role as a professor. It limited my ability to read for pleasure if I didn’t wear my reading glasses. I felt an annoyance at having to keep track of one pair of glasses for when I didn’t have my contact lenses on and a second pair when I did.

However, over time, it became clear that I truly could not function without the glasses for near tasks. In fact, in the era of remote meetings seeing people on the computer screen, I even need the near task glasses to see the faces on the screen clearly. So, I am lucky enough to have the resources to be able to afford some stylish reading glasses. They are now part of my identity.

As I continue in the process of aging and working, I realize that my relationship with glasses will include at least one more evolutionary development. The computer screen is further from my face than when I am curled up in a chair reading a book (yes, I still read actual books) at home. I’m starting to notice that the near task glasses that work at “computer screen distance” don’t work as well at “book reading distance.” So, at my next visit with my optometrist, I’m sure I’ll have a discussion about that. It is not one that I dread at this point. I never would have thought it would be one I look forward to, but that is the case. I know how important the glasses are for my ability to pursue the work that I find most fulfilling. I am fortunate to live in a society where the term “four eyes” is not thrown around as an insult as much as it was 40 years ago. I realize how not using my glasses puts stress on my eyes and the rest of my body in ways that are counterproductive. So, what was once a love-hate relationship with glasses overall is now a love relationship with each pair of glasses I have or will have.

Melanie Bush is an Orientation and Mobility (O&M) Specialist in Montana, and a member of the ASPECT cohort 7.

“It is a blessing to work with people who experience vision loss”, she proudly states. With 25 years of service in this field, Melanie teaches her clients how to use their cane for mobility purposes, equipping them to travel safely, efficiently and purposefully. Her proudest achievements were supporting a 2-year-old and a 92-year-old successful clients. Her ability to provide intergenerational care is a noble skill.

As an O&M specialist, Melanie schedules lessons with clients to discuss their specific, individual mobility needs to determine their plan of O&M instruction.  Melanie meets with her potential clients in what she refers to as “safe spaces.”  This can be home, school, community or workspace. She affectionately describes the world as her classroom. The O&M curriculum is taught, and skills are practiced, reviewed, and generalized over familiar indoor and outdoor settings as well as familiar indoor and outdoor settings. This allows the student to problem solve and gain confidence. Currently, O&M instruction is provided in 17 of the 56 Montana counties, through the Montana Blind & Low Vision program.

Melanie gives a lot of herself to her clients. Some of her dedicated time includes but not limited to teaching:

• Shopping tasks
• Learning how to ride the bus independently
• Organizing the home
• Other comprehensive curriculum
• Problem solving, organization and search patterns

The Montana Blind and Low Vision Services program is part of a vocational and rehabilitation program. The program has 2 components. One is vocational rehabilitation for individuals who have vision loss and want to maintain or gain employment and/or attend educational, academic and/or vocational training. The second component serves Older Individuals who are Blind, age 55 years of age and older. Often, she travels hours to teach some clients. Melanie described providing vision services in Montana as challenging due to lack of funding, providing instruction in a vast, rural state and lack of awareness of the need for and availability O&M instruction. Melanie is blessed to have the best job in the world – Orientation & Mobility Specialist! We salute Melanie for her dedication to self-sufficiency skills for the visually impaired community. We look forward to your continued work and support.