These are several examples of scleral shell eye prosthetics I have worn over the years. Each one costs over $3,000 so why wouldn’t I keep them. The left one was my second manufactured eye prosthetic that I wore throughout elementary school. The ones beside it and the one I wear now are handmade, and fit and look better than the manufactured eyes.

13 Questions I've Been Asked About My Eye Prosthetic

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I have micropthalmia and wear an eye prosthesis. Here is a list of the top 13 questions that I have been asked or have had to answer.

 1. Does the eye prosthesis hurt?  No, a well fitted, well made prosthesis should not hurt. From my past experience, pain usually means the prosthetic isn’t fitting properly and needs an adjustment. The eye is made by an ocularist; someone with both an artistic background as well as one in maxillofacial structure. They blend science and art together to create a one-of-a-kind product that is custom made for each patient. Each year patients can go back to the ocularist to have the eye professionally cleaned and polished and to make any adjustments to the prosthesis if necessary.

2.  Do you have a real eye or just a fake one?  In my case, I do have an eye underneath. Due to micropthalmia, it is much smaller than my other eye, so the prosthesis isn’t just for looks but also to help balance out the bone structure of the face. The type of prosthesis I wear is called a scleral shell. It sits over the real eye like a thick contact lens.  One of the advantages I have that not everyone else has is that the muscles around my eye are intact. When someone has surgery to remove an eye, those muscles are also removed.
Having these muscles allows for the prosthesis to look and act more like a real eye — it makes things more natural. I have been told that I’m pretty good at rolling my eyes.

3. Is it made out of glass
?  No. Glass eyes do exist, but mine is made out of different materials that are sturdier and more durable than glass.

4. How do you care for your eye prosthesis? I don’t take it out often, but usually once a week I will clean it with saline rinse and then put it back in.

5. Does insurance cover the cost of the prosthetic, and what is the cost?  Sadly, insurance companies see the eye prosthetic as cosmetic only, so I am lucky that my
ocularist will let me use a payment plan to cover the cost. This last prosthesis cost around $6,000. The next one will be $10,000 or more.

6. What caused you to need your eye prosthesis? I was born with micropthalmia with blindness in my left eye. Micros means small and opthalmia refers to the eye. Your eyes have a lot to do with the shape and bone structure of your face, so my eye prosthesis was necessary to help with that. Today, infants can be given a spacer or an artificial eye very early on. In my case, there was very little information available about eye prostheses where I lived. I didn’t received my first one until I was 5 years old. Because of that delay, my left eye is still somewhat smaller than the right. In my case, micropthalmia was a congenital abnormality that even today remains unexplained.

Doctors worried I would be developmentally disabled, but I sure proved them wrong. I am a community college instructor and have a graduate education. I live a typical, active life.    

7. How did it impact your vision? I’m nearsighted in my right eye, but the biggest issue is a lack of depth perception. To compensate for that, my right eye actually has a wider range of peripheral vision. I can drive a car; I just can’t ride a bike very well. I also
prefer if people walk either on my right side or slightly ahead of me on my left side so I can see them.

8. Did you get bullied in school for having a prosthetic eye?
Years ago, I was picked on. Middle school was horrible. I was called every name in the book, and really only had a few friends during those intense pre-teen years. Being called a “freak” and other names really stung. I learned to make my own jokes and turn a blind eye to the unsightly negativity of others. (See what I did there?) Jokes and sarcasm did two things: 1) If I could laugh at myself, the bullies had no power or influence over me, and 2) the jokes or comments broke down barriers and allowed people to see me for who I really am. Even today, I use humor as a means of expressing myself.

I also had to learn a hard but essential lesson — self-acceptance. By accepting myself for who I am, flaws and all, others learned to accept me as well. Today I live by the motto “My eye and prosthesis are a part of me, but they don’t define me.”

9. Have you ever lost your eye prosthesis?  One time in fifth grade, I had outgrown my prosthesis and was ready for a new one. It was loose, and it fell out. I was with my class in the library, and the librarian and the teachers were scrambling to help me find it.  Thank goodness it had only fallen down my shirt. Then in sixth grade, I rubbed my eye during class, and sure enough, out it came. The end result was some poor kid next to me climbing on top of the desk in terror.

10. What’s the funniest thing to ever happen involving your eye? When she was 4, my now 17-year-old cousin went around telling everyone she was going to poke their eye out. She had no idea about my eye, but every time she told me that, I would tell her I didn’t need her help — I could poke out my own eye. After months of hearing this, a group of relatives including myself and my mother were gathered at my grandmother’s house. The child once again started telling people she was going to poke their eyes out. I warned her, and when she said it again, I popped my prosthetic out and showed her. She high tailed it out of the room. After that, she kept saying “I don’t like it when people pop their eyes out.”  For weeks, she made sure she kept a wide berth between the two of us.

11. Have you used it for Halloween? I have my old prosthetics, and will sometimes get them out for Halloween or to show others. I have also popped it out as a practical joke
more than once. As my grandmother has told me, you have to be able to laugh or else you will cry. I choose to laugh.

12. Can you get an eye with a symbol on it or a different color?  Sure, if I had a part in a Hollywood movie or wanted to pay extra money, I could have those. But I prefer that my prosthesis match as closely as possible with my working eye. As you can see from the picture of the eye prosthesis that at the top of the page, that matching element can be kind of difficult to achieve.

13. Why would you want to write about having an eye prosthesis?
  Talking or writing about it helps educate others. We are lucky to live in a more open and accepting society that allows for us to embrace our differences. But people still want to learn so they can better understand. I’m open to talking about my eye and my prosthesis because it shows I accept myself. If someone is genuinely interested in learning about it, I am more than happy to share any information I have.

If anyone out there has a question I haven’t answered, you can post it in the comments and I will try to answer it.

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The Worst Part of My 'Bad Vision Days'

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Yesterday was a bad vision day. One of the major misconceptions about disability and
chronic illness is that the daily experience is consistent. Just like symptoms of depression or Crohn’s fluctuate, so does my vision. Within a single day, my vision predictably varies based on lighting and fatigue. With a progressive disease, my vision gradually declines over the years. A less obvious and less predictable feature of my vision is that there are good days and bad days. On bad vision days, for whatever reason, I see worse.

In one of my classes, the professor requested we break up into small groups to conduct miniature meta-analyses. He provided tables from which we were to obtain the necessary statistical values. This table – a relic from a paper published in the 1980’s – was pixelated and blurred, even to the sighted. As I tried to enlarge and convert the text to speech, it became apparent that this document was not accessible in any way. Whether I was having a bad vision day or not, I doubt I would have been able to read the minuscule font.

I cowered over my computer, holding my face a mere inch from the screen. I made jokes to
my fellow group members – a common defense of mine. Nonetheless, my self-doubt
and frustration was mounting. With my eyes vacillating in and out of focus, I could tell I was in for visual strain for the remainder of the day.

Following class, I walked into my lab space and asked, “Has anyone seen where K ran off to?” Unbeknownst to me, I was looking directly at her. She responded, “who, me?” and
I awkwardly explained “the lighting in here – the backlit window with everyone’s dark silhouettes! Sorry, blindy fail. Yes, you!” I surprised myself; normally I find I can recognize familiar faces from this mere 8-foot distance. Not today.

I was seeking help from K because I was having difficulty troubleshooting some errors in a computerized experimental task. My difficulty resulted from navigating a computer with lackluster accommodations. K came to the rescue, quickly tweaking my code and clicking between windows, between programs. I passively stared at the screen, not disclosing that what I perceived was a fuzzy gray blur. I feigned interest and intrigue.

After K fixed the bugs, I tried running through the task a handful of times. One of many challenges I encounter programming computer tasks is that my pilot testing is cursory. I
cannot actually do the task or determine if my data is collected correctly.  Following a few feeble attempts, I again asked to “borrow a pair of eyes.”

My final obligation of the day was a team lab meeting. While discussing a potential novel approach for data collection, the primary investigator (lead of the research) glanced at me,
asking why I was nodding. I of course had no idea she was talking to me. I awkwardly looked left to right, and mumbled “Uh, me?” This was followed by what I can only imagine was a look of confusion – of course, I couldn’t actually see the expression. I then fumbled through an explanation of my thinking.

The awkwardness emerging from turn taking repeated over the course of the meeting. At one point, I wanted to share my thoughts on a study design. We are a small enough group that we often opt out of hand raising in favor of a casual group discussion. Although both present challenges to those with low vision, in this case I repeatedly, inadvertently began talking over the primary investigator and other team members. My self-consciousness got the better of me. The embarrassment shut me up; I kept my comments to myself for the remainder of the meeting.

Walking from campus in the dark of night, I had my hands full with a jacket in one hand and my phone and keys in another. Rather than shoving my belongings into my bag to
free up a hand to use my cane, I decided it was a short walk, mostly well lit. I hadn’t fully pieced together the theme that I was having a bad vision day. I tripped down the stairs. I accidentally weaved on and off the sidewalk, having a hard time recognizing where the cement ended and the grass began. I used my hand to guide around a concrete wall. I walked slowly – well, slowly for me – and approached the train station.

Upon arrival at the train station, I was greeted by two of my lab mates. I hadn’t seen them.
I let them lead the way – to the train, on the train, transferring trains. I wonder if they realized I was doing this strategically. Usually it is seen as a gesture of chivalry to urge another to take the lead. For me, it was a gesture of desperation. I needed them to guide me.

When I got home, the burden of my bad vision day hit in full force. I was debilitated by
an eyestrain headache. As an absurdly busy aspiring academic, eyestrain headaches are often one of my chief complaints. When they hit, the pain is overpowering; I cannot do anything but rest my eyes. This means no more writing papers or reading articles or typing progress notes. I have to listen to my body and accept that sometimes, I cannot keep up my juggling act, in which I balance teaching, clinical work, research, and my interests in fitness and writing. In these dark times – literally, as I rest with a cool rag covering my closed eyes – I often question my abilities to persist.

A few months ago, a fellow member of the low vision community said to me that the limitations of our vision are self-imposed. He spoke to the idea that we limit ourselves, and our shame and self-stigma holds us back more than our vision ever will. I hate my bad vision days, and feel physically constrained by the limitations of my vision. And yet,
the worst part of my bad vision days is not my vision at all; it is self-doubt.

Bad vision days lend themselves to self-criticism and pessimism. This morning, after recuperating, I was reminded and relieved that like other bad days, bad vision days end.

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Why I'm Thankful a Store Manager Called Police About My Guide Dog

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It was early spring of 1998. Pantera, my first guide dog, and I had been a working team for just six months. I was enjoying the newfound freedom a guide dog had brought into my life as a young wife, mom and recent graduate with a Master’s degree in counseling.

On this evening, my husband Steve and I were on our way home from a wedding reception. We’d just seen dear friends, and I was feeling particularly confident in the relationship I’d built with Pantera. As we entered the store, we were laughing and enjoying the evening together. I was loving the ability to walk confidently with my guide dog by my side.

Steve had just grabbed the cart when the store manager approached us and said, “No dogs allowed.”

In my mind, I thought, oh this is one of those times a little education is needed. “This is my guide dog,” I explained, expecting the manager to move on. He did not seem to be listening. He pointed to a sign that read: No Pets Allowed. Steve re-emphasized that Pantera was a guide dog and I was blind. We had the right to enter the store, he reminded the manager.

The manager pointed again to the sign:  No pets allowed. Patiently, Steve said, “This isn’t a pet. She’s a guide dog.” I pulled out my access card from Guide Dogs for the Blind and showed him the summary of the laws. Perhaps he just needed further education, I thought, struck by his unwillingness to listen to us.

The manager was unmoved. “No. No dogs allowed. If you don’t leave, I’m going to call the police.”

The police? That was an unexpected turn. How did we get from entering the store with my guide dog to calling the police? Simple education had shifted to defending my right to be in the store, and it felt surreal. “We’re not breaking the law. It’s perfectly legal for us to be here,” I said.

“You stay at the front of the store,” the manager demanded. “I’m going to call the police.”

“Please do,” Steve said. We were in disbelief. What was happening? This seemed to have moved beyond discrimination into the bizarre. Our kids were waiting at home, and this quick stop was talking longer than expected. We quickly walked through the store to pick up our needed items.

“He’s watching us,” Steve told me as he spotted the manger craning around an aisle, as though we were dangerous criminals.

The cashier who checked us out was oblivious to her manager’s concerns. She was friendly and talkative, and I’m not sure she even noticed Pantera. But the manager was waiting for us as we approached the exit. He was furious. His indignation felt ridiculous, since we knew Pantera and I had every right to be in the store.

“The police are on their way,” he snarled. “I’d like you to wait for them outside.”

We complied, not because we had any obligation to obey this man, but because we needed to see this through. He had not heard anything we said. He had ignored our right to access and had been contemptuous and disdainful because of my guide dog. We’d been treated as though we didn’t deserve the same rights as others, and as we walked outside I was struck with empathy for people throughout history who have experienced discrimination. I couldn’t get my head around the pain of discrimination until we felt his blatant suspicion and mistrust that night.

It was a chilly evening as we stood outside and waited for the police to arrive. Finally, a patrol car pulled up and parked near the entrance to the store. The manger walked out to meet the officer, who got out of his car and walked straight to Pantera. He bent over and rubbed Pantera’s ears, then looked up at Steve and me.

“This is a beautiful dog,” he said, sending a clear message. He stood up and turned to the manager. “Sir, you need to understand that you can choose not to allow these people in your store. However, you would be subject to a hefty fine as a violation of the Americans with Disabilities Act.”

The wind knocked out of his sails, the manager didn’t even acknowledge us, let alone apologize. He just turned and slithered back into the store. Before the officer left, he said he was sorry about the incident and reassured us that, of course, we were welcome to come back and visit the store anytime.

Stunned at the way the manager had behaved, Steve and I talked about the experience all the way home. I’d actually been denied entry to a store because I had a guide dog. Now what? I knew I couldn’t just go home and forget about it.  I felt that something good could come from our experience, but I wasn’t sure how.

I went into work the next day and told Julia, my superviser. She was appalled. “That can’t happen!” she exclaimed.  She knew the owner of the grocery store chain and immediately called him. He was shocked and apologetic, and referred us to a woman in the Human Resources department, who was also shocked and apologetic.

We also wrote a letter expressing our concern that something like this could happen, and citing my rights under the Americans With Disabilities Act. The grocery store’s corporate office was gracious. The offending manager was required to write us a letter of apology and gave Pantera a gift card to Petco. The store also required him to take two weeks unpaid leave.

These responses soothed the sting, but I still didn’t feel at peace with the experience. I wanted to speak up and educate further, so I asked the Human Resources representative if I could train their store managers on the ADA. She agreed and in the weeks leading up to my presentation I read and studied extensively. I learned as much as I could about all aspects of the law so that I could present clearly and answer questions confidently.

Being told to leave the store because I had a guide dog became an empowering reference point for which I am grateful. I am not grateful for the sting of blatant discrimination. I do not want anyone to be denied access anywhere or at any time because they have a guide dog. However, I am grateful for the advocacy skills I gained from this experience. I have carried them with me to use, for the many times since then when I have been put in a position of speaking up for myself and other individuals. This experience shifted my mindset into one of an advocate, and for that I am grateful.

In the past 18 years, I have had many opportunities to advocate and educate about the Americans With Disabilities Act. Unfortunately, many of these times have been after being denied access — to a taxi cab, a major women’s clothing store, a major airline, and other situations where it might be easier to simply move on. But I reflect on this first experience and how it taught me the importance of assertively speaking up and educating. I could have left that store feeling frustrated, not shopped there again, and left it at that. I learned that I needed to speak up, not only for myself but for all those who may enter that store after me. I take the time to educate and advocate so others won’t have to go through the same thing.

On a chilly March evening in 1998, standing outside of the grocery store waiting for the police to arrive, I found my voice. I am thankful for how this experience taught me that lemonade can come from lemons. Through one uneducated store manager, a large group of managers were educated. My voice matters and can make a difference.

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What My Prosthetic Eye Helped Me See About Being Different

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As a child, I was extremely aware of the fact that I was, well… different. I was 3 months old when the doctors diagnosed me as having micropthalmia with blindness. Micropthalmia literally means “small eye.”  In my case, my left eye was smaller than the right. Along with this, the optic nerve that branches out from the brain failed to properly form to my left eye. My mother, a nurse, knew early on that something was different. If she entered my room to wake me in the morning, she would have to sing or talk to me so she wouldn’t startle me.

When I was 5 years old, I underwent what I thought was the most traumatic experience of my life. My parents took me to our ophthalmologist, who inserted a cold object that fit like a large, thick contact lens over my left eye. This was an eye prosthetic known as a scleral shell. Five-year-old me thought the eye prosthesis would magically fix what wasn’t right and I would be able to see out of both eyes like other kids. I was horribly disappointed.

My first eye prosthesis was a manufactured one that seemed only to exacerbate my feelings of being different. I eventually outgrew it, and it would be years before my parents and I learned that patients like me would need to replace an eye prosthesis every five years until I was finished growing. To make matters worse, the iris of this eye prosthetic didn’t match the color of my right iris, making it look as if I had one smaller, different-colored eye. I was the target of brutal bullying for years.

Eventually, we met a doctor in the D.C. metro area who was an ocularist. I read an article about him in a newspaper, and my parents and I were so impressed that we made an appointment to see him. An ocularist is someone with a special knowledge of eyes and eye shape, and the bone structures of the face. They also have an artistic background, so they understand color. Instead of a manufactured eye, I got a custom-made prosthetic that matched the other eye and fit much better. It boosted my confidence immensely.

Over the years I have had quite a few eye prosthetics, and I have found means of coping with the feeling of being different from others. I have realized that we are all different, and there really is no such thing as normal. I also learned about the healing power of humor. They say laughter is the best medicine, and for me that was true. I have a knack for jokes and sarcasm, so once I started making people laugh with me instead of at me, it broke down many of the invisible barriers that had once kept me isolated. I learned to turn a blind eye (get it?) to negativity and to keep an eye on the positive things in life (pun intended.)

I try to help others see that it’s OK to be different, and I welcome questions about my eye prosthetic and being blind in one eye. By being open and honest and accepting myself, I am hopefully allowing for others to be more open as well. Knowledge is power.

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When a Stranger Said 'He Loves You Even Though You're Blind'

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If you know me, you know I’m pretty much an open book when it comes to educating others about my blindness. Few questions or comments offend me or catch me off guard. I’m even fairly laid-back with the whole “inspiration porn” issue, because honestly, with regard to disability or otherwise, you can never know how much you might help or encourage someone, just by being you.

But I need everyone to stop martyring my boyfriend.

Picture this: Jordan and I are strolling through an art gallery arm in arm, less because I need him to guide me and more because I want to be close to him. He’s describing paintings, sculptures, and others’ interactions to me. We’re grinning like fools in love… because we are.

“Oh my gosh!” a friendly, well-intending stranger greets me, placing a hand on my shoulder. “You guys are precious. I’ve been watching you, and he’s so attentive to you. He loves you even though you’re blind. You are so lucky to have him.”

What?

I breathe. Grip Jordan’s arm a little tighter. Smile. Thank her. Because even though my heart is splintering into a million tiny pieces, it’s not like what she said is untrue. Jordan is super helpful in general. He waits for me outside of the restroom. He gives me rides to and from work sometimes to give me a break from the acute anxiety I experience while traveling thanks to a
rail platform accident I had in 2014
. He helps me fill out paperwork I can’t read. He cooks dinner and takes care of the utility bills. Describing things is second nature to him now, and my world is full of color because of him. The list goes on, and he does it all without batting an eye.

But here’s what I feel people don’t see. While Jordan cooks, I clean. While he takes care of utilities, I take care of rent. When he needs help with a paper or cover letter, I read it and offer feedback. When his left side seizes up thanks to his cerebral palsy, I make him stretch and help to work the kinks out. I have also been known to button shirt collars and sleeves.

Love should never be a contest of favors, but whether or not disability is a factor in a relationship, there’s an element of give and take between partners. Sometimes things are equal, and sometimes the scale tips one way more than the other. We take care of each other, and that’s how it’s supposed to be. There is no shame in interdependence.

So why does this bug me? Jordan really is the best boyfriend ever, so why can’t I be content in simply nodding my head and saying, “I know, right?”

It’s the “even though you’re blind” clause that sends me over the edge. It’s tantamount to saying, “I love you even though you’re hardheaded. I love you even though you are a pain in my ass.” And yet, these blanket statements seem benign by comparison to the careless assumption that loving a blind person is high-maintenance and a challenge most wouldn’t dare accept.

In moments like at the gallery, I find I stand in the shadow of a sighted partner who, at least in this case, is privileged in that his disability isn’t apparent to most. I am left with the impression that spectators must feel, on some level, like Jordan would have found a smoother path with a sighted (and therefore more ideal) partner.

This isn’t just me being insecure. I have tried in earnest to be reasonable, but even my usually placid tolerance has its limits. Wouldn’t you be devastated to know that people considered the most important relationship in your life to be a charity case? Wouldn’t you be devastated to learn that you were viewed as a labor of love because of some aspect about yourself that can’t be helped? Let’s face it, even if they’re your favorite person in the world, loving a partner can be rocky at times, independent of disability. Last time I checked, that was known as “for better, for worse; for richer, for poorer; in sickness and in health.”

In a world where I am constantly forced to prove myself, poor Jordan ends up helping to pick up the pieces every time we have an interaction like this with someone. And believe me, if this were a rare occurrence, I honest-to-God wouldn’t be complaining. But it happens all the time. At the store, on the street, on social media — the damaging rhetoric of ableism runs rampant in others’ romantic lives as well as my own, and it needs to stop.

So please, by all means, compliment my boyfriend all you want. Clearly he’s awesome, because I love him. But I urge you to examine the reasons behind your admiration. If you find you’re inspired by us, please do not place him on a pedestal, because that creates a burden where it didn’t exist. Do not mistake my blindness as some tragic flaw or his sensitivity toward me as a labor of love. Instead, observe our dynamic. When we talk at the same time, when we share an inside joke, when we go from hugging to play-fighting at intervals, when he leads me by hand to touch a statue, when I drag him haphazardly toward live music — those are signs of best friends in love.

I agree, love between best friends is beautiful, it is enviable, it is inspiring. We’re lucky to have each other, and I — we — definitely don’t take it for granted.

Picture this: Jordan and I run into an acquaintance while browsing at an antique store.

“How are you?” she asks. “Is he taking care of you?” I smile and play the part, but my heart
sinks. It’s the second time in a night and at least the fourth time in a month. Why hasn’t either of us found a way to gracefully correct people?

“She’s taking care of me,” Jordan says brightly, stunning me to near tears. “We take care of each other.”

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How My Identity Has Evolved Along My Journey With Low Vision

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At age 17, my vision began deteriorating rapidly. I was diagnosed with a rare form of early-onset macular degeneration. Having a permanent and progressive disease means that I continue to respond and adapt to changes in my vision. Some of these changes are fairly intuitive: as my vision declines, I use stronger magnification and rely more heavily on auditory information. Yet, many features of my vision loss involve less obvious transitions. As my vision declines, I update the language I use to describe my vision loss. I do not believe these shifts in how I describe my condition are purely semantic; instead, they coincide with my changing sense of identity.

“Bad Eyes”

I first noticed something was wrong when I took a practice ACT my junior year of high school. My neck ached for days after I spent hours hunched over my desk, squinting at materials.  My scores were alarmingly below what was expected. I had a hard time reading, and I presumed I desperately needed a new prescription.  When I went to the eye doctor, I was told that lenses couldn’t correct my vision beyond 20/70, and they had no idea why. After hours of testing and consultation with specialists, I had my answer: Stargardt disease.

When I was first diagnosed, I commonly referred to myself as having “bad eyes.” I felt it wasn’t worth it to unload onto friends and strangers exactly what my diagnosis was or how it impacted my visual experience. Frankly, I didn’t want the world knowing why I couldn’t see. Sharing this narrative felt too intimate and personal. It was so much easier to tell others that I had forgotten my contacts or wasn’t wearing my glasses.

Nonetheless, I felt different. Having navigated the world as a sighted person, I felt like something was being taken away from me unfairly and unexpectedly. I also felt it was unacceptable to share these feelings. I didn’t want anyone’s pity or concern. I wanted to be strong, independent, and resilient.

Within months of my diagnosis, I stopped driving. To my teenage brain, I was giving up my autonomy and freedom. I felt dependent. Although grateful for friends and family who drive me, I began feeling equally bitter that my schedule will forever be at least partially dictated by others. The reality hit: over time, I will rely more and more on those around me. I began to reconsider my expectations for my future.

“Visual Impairment”

Transitioning to college while simultaneously losing my vision was stressful. It became obvious that denying the reality of my vision loss was limiting me academically and socially. With this realization, I started using the label “visually impaired.”

I required academic accommodations, facilitated by Disability Services. I despised this process; I did not want additional attention or special consideration. Despite my best efforts to be unobtrusive, I needed a way to tell my professors what I needed and why, and the label “visual impairment” suggested that I had something that needed accommodating, but I wasn’t “broken” and didn’t like the word “disabled.”

My sophomore year, I got involved in several organizations on campus. One organization, a community service sorority, Alpha Sigma Gamma, required that we do “ducky dates” -– brief 10-15 minute conversations to get to know everyone in the organization. I felt too embarrassed during these brief initial encounters to admit my visual impairment. I didn’t want to be seen as dramatic or defective. It felt socially inappropriate to turn the conversation away from our favorite romantic comedies to instead highlight my disease. But I also found myself feeling embarrassed and uncomfortable when I saw students wave and I had no idea if they were waving at me. My vision was bad enough that it was impacting my social relationships. I couldn’t see friends and acquaintances when we passed each other on campus. I felt like I was missing opportunities to connect.

I came up with a sneaky solution. At the time, it seemed brilliant; in retrospect, it seems cowardly and inauthentic. On a day I was unable to attend our general meeting, I had my bestie, Lena, make an announcement to the room of over a hundred girls that “Jen can’t see. This means she likely won’t recognize you on campus. This does not mean she doesn’t want to know you, so don’t be offended if she doesn’t wave, and introduce yourself when you see her!”

To me this was the perfect solution. I would not have to put myself in the vulnerable and uncomfortable position of repeating this on every one of my ducky dates, and people would know that I wasn’t being an asshole if I didn’t recognize them.

There were unexpected benefits to going to a small school. When I walked with friends to and from classes, they whispered cues like “That’s Sarah, Becca’s roommate,” so I would know to say hi. I reflect with gratitude on how this small and enmeshed community enabled me to avoid countless awkward situations.

“Visual Disability”

After college, I moved with my boyfriend across the country. I had to learn how to get around a new and unfamiliar area much larger than my small college town. I only knew one person, my boyfriend, reducing the availability of helpers. In Missouri, my family and friends were helpers who could drive me to appointments, networking opportunities, social gatherings, etc. With fewer comforts like helpers or familiar destinations, I had to learn new ways of traveling alone, including the use of public transportation. I would like to point out that public transportation is challenging when you cannot read the ticket machine, bus or train numbers, the stops, or street signs.

“Visual impairment” did not adequately encompass the extent to which my vision loss impacted my functioning and my identity.  Although I didn’t especially appreciate the term “disabled,” I felt the phrasing, “I have a visual disability” highlighted that my condition has an impact on how I navigate the world.

Coinciding with this change in label, I encountered my first experience of flagrant discrimination. After spending months volunteering for two research labs, I had a job offer in hand. I used this offer to try to entice the other lab in which I worked to hire me. During this negotiation, my potential employer expressed concern. “How can you possibly do this job without being able to see?” I explained the assistive technology I use, and reassured him that I’d been successful as a volunteer. The role involved clinical work, and he said, “I just don’t get how you could see well enough to work with patients.”

I got the job, but only because I had an ally and an advocate behind the scenes. Months after I was brought on, she informed me she convinced this employer that I was a capable and worthy hire. I continue to love and admire her as a mentor, friend, collaborator, and overall phenomenal human being.

“Legal Blindness

I questioned the use of “visual disability” because it’s vague. Although I have a visual disability, I worried this didn’t describe anything about my visual experience. The term “legally blind” was factual, practical, and to the point. Legal blindness is defined as vision worse than 20/200 in both eyes despite corrective lenses, a threshold I surpassed four or five years ago. It seemed this label adequately suggested severity, and distinguished my vision from total blindness. Further, the use of the label “legally blind” led me to feel entitled to request services and accommodations. I was legally blind, after all.

Around this time, one of my closest friends was training her service dog. I looked into it, and I certainly qualified. I got my adorable pup, Milo.  The four of us – Paige and Raleigh, Milo and me – completed extensive training with Operation Freedom Paws. Milo helps me navigate crowds, sense depth, and travel independently.

Using a service dog was an outward display of my disability. It seems having a service dog automatically signals to the world “there is something medically going on with me! Please come talk to me and distract my dog.” I respond to questions about why I have Milo with, “I’m visually impaired; actually, I’m legally blind.” This answer tends to make sense to people; that’s the common association with working dogs. In fact, one of my favorite questions, asked by an overly exuberant Peet’s barista, was “Is that a blind dog?” No, my dog is not a blind dog; he is sighted.

Milo isn’t a guide dog. He is a service dog. This means he did not complete the training at guide dog academies. He helps with some aspects of my vision loss, but not others. After a few years exclusively traveling with Milo by my side, I have since reserved him for specialized activities. He’s the best little dog a gal could ask for, but he can make my professional life feel more encumbered rather than less. Still, traveling with Milo has taught me the value in confidently and publicly identifying myself as someone with significant vision loss. I now announce my vision loss at orientations and trainings. I mention it to store clerks, waiters and waitresses, and frankly anyone who will benefit from being aware.

“Blindness”

After moving up the peninsula to San Francisco, I became involved in a host of non-profit organizations targeted at providing services for the blind. Inspired by the efforts of advocates, I felt empowered to refer to myself as blind.

I started receiving services through the Department of Rehabilitation. I completed orientation and mobility training and started using a long white cane. I learned Braille, though I am still trying to improve my speed. I began to feel “blind.”

Identifying as blind progressed my views. I learned more about the blind community and the history of the disabilities movement. I procured profound empathy for others living with invisible illnesses and the challenges of identifying with a minority group. Recognizing the reality of discrimination enlivens my belief that it is impossible to discern individual worth from ability, wealth, skin color, socio-cultural background, gender, or sexual preference. I am now more of an advocate for empowering rather than silencing minority voices.

Despite the pride I feel about my personal strength and accomplishments, I still fear disclosing my disability. I regularly have to defend my qualifications. Sometimes, others presume I am less capable due to my blindness. Other times, others presume I am receiving special treatment due to my blindness.

I have had the incredible privilege to receive two fellowships for my graduate education. Both fellowships include the diversity of applicants in their decisions. Unintentionally, friends and colleagues alluded to how I was “lucky” to be blind. I became exceedingly sensitive, and even questioned my own qualifications. Was I receiving these prestigious fellowships to boost the number of students with disabilities receiving awards?

It is appalling that those of us identifying with minority groups are forced to question our achievements. Many continue to believe that beneficiaries of fellowships and awards prioritizing diversity are less qualified. We are deserving of these opportunities both because of and in spite of our minority experiences. Unfortunately, some aspects of life are more challenging as someone who is blind or black or transgender. Until structural discrimination no longer exists, I will proudly acknowledge the ways in which my disability deserves a sensitive eye.

“Low Vision”

While working with a therapist who is fully blind, I began to process my vision loss and its impact on my identity. We discussed the challenge of being in the gray area of blindness. I don’t fit with the sighted. I obviously navigate the world differently as a result of my vision loss. I don’t fit with the blind. I obviously do not navigate the world as if I have no vision.

I can certainly appreciate the belief held by members of the blind community that those with usable vision should not call themselves “blind.” Although I believe I fall under the umbrella of blindness, I now stray from the term “blind.”

I have low vision. This description, similar to legal blindness, is descriptive and honest. It doesn’t sound as lawful or rigid as “legally blind.” Because I have low vision, I use assistive technology. I often travel with a service dog or a long white cane. I read large print and Braille.  I’m sure the tools I use will continue to change, and likely so will the label.

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