Over the years, I have had to explain that I cannot see as well as other people. I use a variety of terms, such as blind, visually impaired, low vision and so forth. One that many people use is the phrase “legally blind.” People often seemed confused by this, so I thought I’d give an answer here today.
First of all, let me explain something: Most people assume that the word “blind” is very black and white. They think that you are either sighted, which means you see everything, or you are blind, which means you see black or nothing at all. This actually couldn’t be farther from the truth. In fact, most people who have vision issues, around 90%, have some usable vision remaining. Whether that is light perception, shadows or shapes, it is not simply “darkness.” So, to say I am blind does take a little more explanation.
Ok, so back to the “legally blind” thing. Here is the basic definition:
A person would be considered legally blind if their BEST EYE has an acuity of 20 over 200 or lower at its most correctable.
Ok, let’s break that down. Let’s say there is a person who has very poor vision in one eye but perfect vision in the other. Are they legally blind? No, since their best eye is better than 20 over 200 at its most correctable. Another example is a person who has poor vision normally, but with glasses or contacts, it can be corrected to 20 over 20. Are they considered legally blind? No, since the correction brings them above the 20 over 200 barrier.
So, who is legally blind? Well, basically, anyone who can’t correct their vision in either or both eyes above 20 over 200. Some people might have a lot of usable vision while others have hardly any at all. However, they would both be considered legally blind.
I have heard many people say something like, “I’m legally blind without my glasses.” To them I would say, “Well, then you are not legally blind.” The term “legally” here implies that you are now eligible for certain benefits because of your limited vision. (One other thing I say that doesn’t always come across so kind is, “Did you drive here? Yes? Then you aren’t legally blind.”)
Now, how do you get to be “legally blind” if there is a distinction? Well, that takes a doctor writing a letter and saying that your visual acuity is below the line and could be considered legally blind. Typically, you have to show this letter to governmental agencies, certain services like guide dog organizations and so forth.
I think that about explains the basics of it. If someone is calling themselves legally blind, chances are they have enough of a vision issue that it affects there everyday life. For example, they usually can’t drive, they might have assistive technology and they may or may not use a white cane.
Here’s the important part of all of this: no matter what you say about yourself, you know your vision the best. I often like to tell people that I have a “visual disturbance” as I am a Star Wars fan. But, most likely, if you are telling someone you are legally blind, you’ll have to go into a deeper explanation as most don’t have a clue what that means. That is, of course, unless they just read this blog post!
This blog post (and featured image) was originally published on Life After Sight Loss.
My daughter, Molly, has a way with words, thoughts, and feelings. When she puts them together to create a heartfelt blog – comparing me to glitter – it’s priceless. ❤️ Love my sweet Molly Mo!
Oh momma how I love you. You’re my best friend and my closest confidant. My momma is like glitter, alway shining bright but you can never seem to get rid of her. She is brave and fearlessly bold in how she loves others. She may be blind but she sees me in a way no one else can, it’s kinda maria and molly thing. Oh, how my momma is gorgeous and a dancing queen. She may even be a better dancer than me, but I’ll rarely admit that. My momma is funny as hell! Yes, I’m finally admitting it, even when I am having my darkest days she will always be the light who illuminates my heart. When she isn’t at home it just feels like a house. Oh, my momma loves me so much as do I love her. This blog is somewhat out of the blue, but it…
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Recently, there was a photo shared on social media that caught my attention.
The photo was posted by Shannon Elliott. It captured a special moment at her brother Brandon’s wedding. The moment when Brandon looks down the aisle at his beautiful bride. He wanted to see more than a foggy blur, which meant he had to put away his pride. You see, Brandon is affected by LHON and is legally blind, so he needed a little assistance to see her beauty through his own eyes.
In the photo, Brandon, a very handsome groom, is holding a pair of binoculars up to his eyes. The smile on his face speaks a thousand words!! Below is what Shannon wrote about the photo.
“Just wanted to share this photo with you all. ❤️ For those of you that don’t know… my brother went blind and lost all of his central vision in May of 2016. For the longest time, he was not comfortable talking about what had happened to him, not comfortable asking for help from people, not comfortable using visually impaired tools to help him see (especially in front of people), etc.
On April 14, 2018 he took a pair of binoculars down the aisle with him so he could “see” his bride walk down the aisle. 😭 Be still my heart. ❤️I have never been so proud of an individual before. You continue to show me that the positives outweigh the negatives. You continue to show me to never give up. I wish I could put into words how much you mean to me and how thankful I am God chose me to be your little sister.Be sure to visit our website: www.howhesees.org
I have limited VI51ON (vision) bracelets left in all sizes. If you would like to order one to support LHON research, click here! My goal is to send the biggest check I can to The LHON Project/UMDF at the end of November. Thank you for sharing my brother Brandon’s story. ❤️” – Shannon’s Facebook Post | 9/29/2018
Omg! Don’t you just love that!! It gave me all the feels! One thing is for sure, I will be using some fancy shmancy binoculars at my kid’s weddings!! Yup. They work pretty well for our type of central vision loss.
Shannon is such a wonderful sister — so be sure to check out her website! You can read Brandon’s story here — How He Sees – A Sister’s Insight Into Her Brother’s Sight Loss | Shannon Elliott (May 2018)
My daughter Molly had just turned 14 years old back in September 2013. Her only concerns were her friends and enjoying her first year of high school. All was good until life threw “your mom is going blind” into the middle of her teenage world.
Yeah. It was not an easy time for her. Molly and I have had our share of sad, angry, and “life is so unfair” conversations about LHON and my vision loss. With lotsa laughter and a tonah tears, we’ve managed to get through most of it unscathed.
Molly is now 19, and one of the most resilient, strong, and compassionate young women I know. Is it because of what she has gone through? Adjusting to a blind mom? Maybe. Honestly, I don’t know too many young girls who have had to cope with their mother going blind in a matter of months. It was a game-changer, to say the least! Molly definitely had to grow up faster than most of her peers.
You may have read my recent blog titled, “Empowering My Invisible Disability With A Touch Of Ink”, where I talk about my first tattoo. What I did not mention, was this.
As I was getting my tattoo done, Molly was one chair over from me getting her third tattoo done. Another mother-daughter moment for the books right there!
She recently posted a photo of her tattoo on social media and this is what she wrote.
“Five years ago, on September 24, 2013, my mom – aka my world – was diagnosed with a rare disease which deemed her legally blind. Sighted or not, you’re amazing and still funny as hell! Thanks for guiding me when I was young. Now I’ll guide you, not into poles, and always tell you where the curbs are. I love you more than words could ever say! ❤️ mhj forever.” | 9/24/2018
So touching and sweet! Right? She is a beauty and a blessing to me! Oh, my Molly Mo – I love her so!
The tattoo is in black ink and located on the inside of her upper right arm. In the center of the design is a simple circular compass. Along one side of the compass is the date of my LHON diagnosis, “Sept. 24, 2013”. On the opposite edge of the compass are my initials, “M.H.J.” – Which also happens to be her initials too. Surrounding the compass, are large wildflowers and sprigs of lavender. They were artistically shaded to give the flowers depth and detail. It’s amazing and so meaningful!! I LOVE IT!
Molly’s tattoo was done at SD Tattoo | San Diego, CA
My phone rang. I was a bit annoyed because I was getting ready to go out for the night. I did not have time for any chit-chat. I looked at my phone and It was my Neuro-Ophthalmologist. It was weird. I wasn’t expecting a call from him considering I had just seen him earlier that day.
He had some news. “I have your DNA test results,” he said, “It’s positive.” – he paused for a moment. “I am so sorry you have this, but I’m glad we finally know what’s causing your vision loss.” He also mentioned that you were here to stay. Funny, I don’t remember inviting you here. My doctor finished with some supportive words and we hung up.
I sat there for a moment. Wow. We had been searching for you for 6 months. I wrote down your name and number. I didn’t know you, or why you were here. I had a bad feeling that you were about to change my life.
I walked to the other room and told my husband the news. He didn’t know anything about you either. We didn’t say much more, and within a few minutes, I was out the door as planned.
It was my monthly Bunco night with my girlfriends. The thought of canceling never crossed my mind. Why should I? I wasn’t gonna let you, a complete stranger, get in the way of my wine, women, and fun. But, deep inside, you scared me. You made me feel anxious. Should I be worried about what you were doing to me?
Sitting in front of two of my closest friends, Robin and Ursula, I brought you up in our conversation. I said, “Okay, so, I just got a diagnosis. It’s a really long name with a number. LH…umm, something. I don’t really know anything about it. I think it may involve my kids too. I don’t know…”. It got quiet. I started to feel numb. Perhaps in shock. As people arrived and the night went on, you weighed on my mind — forcing me to think about you. I kept pushing you away. You just appeared in my life an hour ago for god sakes! Back the f*ck off!
When I returned home, my husband told me that he read about you on the internet. You were my worst fear. I heard the word “blind”. I heard that you could also cause my kids to lose their vision. OMG. Not my kids. I can not fathom my kids going through, what I’m going through at some point in their lifetimes. I had heard enough about you. How dare you come here and do this!
But, you don’t care. You don’t care one bit. And, little did I know, you had the balls to unpack your shit and setttle in months ago. All without me ever knowing, until now.
It was getting late. I’ll read more about you tomorrow. This isn’t going to be a big deal. I’m driving, I can still see, okayish, and I’m managing just fine. Yeah, I’ll be fine. Everyone will be fine. You want to stay? FINE! Make yourself at home Lebers Hereditary Optic Neuropathy – #11778, or LHON, or whatever you want to be called. I’m calling my good friend Miss Denial tomorrow and she is fierce! She is gonna keep your emotional shit storm away from me for as long as she can!
There are many types of invisible disabilities. They are conditions I suspect many people would like to forget – even if it was just for a day. Unfortunately, that’s usually not a choice. Disabilities, seen or unseen, often come with unwanted physical and emotional scars – little personal reminders. They remind us of our unexpected life. Yep. A life we did not choose.
Although our condition may never be totally cured, only managed, there are things we can do to empower our invisible selves and maybe deflate the stigmas we often encounter at the same time. We can take control. We can get creative – creating something artistic, powerful, and personal. Hmmm. Have you ever thought about getting a tattoo? No no no, not as another depressing reminder. But as a design you choose to empower your mind, body, and truth surrounding your disability. How cool does that sound!! Oh, wait. Don’t tattoos carry stigmas too? Yes. Yes they do. The fact is, tattoos and disabilities have BOTH been stigmatized in different ways.
Society has become more openminded and accepting of tattoos as part of mainstream culture. There is still the idea that people who have tattoos are somehow related to a gang, unprofessional, or from a bad part of town. In reality, that’s not always true. It’s that kind of thinking that feeds the stigma attached to tattoos. Nowadays, in many professions and workplaces, tattoos have become a little more acceptable. People design tattoos that have incredible meanings and stories behind them. They could even be considered works of art on the human body. And yes, I am well aware that tattoos are not for everyone.
In a similar way, many Invisible disabilities are often minimized, overlooked or misunderstood. You know, if you don’t look disabled, then you must not be disabled. There’s nothing wrong with you – You’re just being lazy, overly dramatic, unmotivated, or faking it. Okay, I believe I can safely say that 99.9% of the time, that’s not true. It’s a stigma attached to invisible disabilities. Since I became disabled myself, I have come to understand the stigma attached to various disabilities, particularly vision loss. I suppose that’s why conversations that include “teachable moments” are so important!
Personally, I think the process of designing and getting a tattoo symbolizing your invisible disability can do two things. One, it can feel incredibly empowering. Two, it can spark conversation and bring awareness to a particular condition. It’s a “two-for-one” that just may help deflate the stigmatization of both tattoos and disabilities.
I have wanted to get a tattoo for years. I just never had the guts, the perfect design, and the whole universe come into alignment for me. Since becoming legally blind, I wanted a tattoo to express my experience from my LHON diagnosis to reinventing myself as Girl Gone Blind. Recently, my guts, a perfect design, and the whole damn universe aligned!
So, I did it. I got my very first tattoo!
What is it? What is it? What is it? Holy crap! Calm down, I’m gonna tell you.
The tattoo is on my right leg. On the inside of my calf to be exact. It starts right above my ankle and ends about 2 inches below my knee. It was drawn in black ink. The design is based on a traditional Buddhist symbol called an “Unalome”. The same unalome design my daughter has on the back of her calf. The unalome represents a path a person takes throughout their life. The path can be messy and swirling with fear, anger, sadness, anxiety, and even happiness. That part of the tattoo, nearest my ankle, is a lot of curls and swirls that loop back-and-forth, creating a beautiful, yet chaotic, design. As the line (i.e. the path) unfolds and straightens, the mind finds clarity, eventually freeing itself from the cycles of struggle and suffering. At the bottom of the unalome, I have the date “9.24.13” – which is the date I was diagnosed with Lebers Hereditary Optic Neuropathy (LHON). In the line, that has unfolded from the swirling chaos, the words “girl gone blind” is written in cursive. The line continues up from the words and ends with 3 dots. An ellipses. The ellipses means there is more to come.
I absolutely love my tattoo and what it means! I’m not unprofessional, related to a gang, from the bad side of town, lazy, overly dramatic, or unmotivated. And, I am not, in any way shape or form, faking my vision loss. What I am doing is, living, learning, laughing, and moving on after a life-changing diagnosis that no one can see.
Creating this tattoo was so cool for me. It not only empowers me and my disability, but the emotional path I travel. It has already sparked conversations about my vision loss which confirms I have no regrets about my touch of ink!
Do you ever wonder why family, friends, or even complete strangers say the things they do about you and your vision loss? You know, things that make you go “Hmmmm”. Well, chances are, they’re just trying to be helpful or encouraging the best way they know how. Some people may be at a loss for words and what they end up saying wasn’t meant to be patronizing or sarcastic. Then there are others who need to keep their damn mouth shut.
I know how other people’s comments can sometimes be a bit ridiculous, and yet, I know they really do mean well. Over the years, I have learned a few ways to ignore, own, deflect, or simply appreciate people’s comments in regards to my vision loss. Perhaps you will relate to one or all of the following comments that have been said to me.
Ummm. Thanks, but no thanks to this and any other random health advice. You know the ones I’m talking about – everything from “You need to go to this eye specialist I know,” and “You should try this new detox diet I saw online,” to “You need to try these vitamins I sell in my business, I’ll send you a link!”. ugh.
Response strategy: Start by giving the person offering the advice the benefit of the doubt. They likely are offering this advice because they care about you and want to help. And such recommendations are better than the alternative option where they either ignore you all together or ignore the fact that you are legally blind. Simply offer your thanks and appreciation for their concern and information. If they don’t back off, you might also tell them that you have a great doctor or several specialists who provide you with excellent care and are up-to-date on the latest treatments/research for your condition. You can also make this a teachable moment to increase awareness about your type of vision loss.
Let’s own this one! Such a comment usually comes on the heels of people first learning of your vision loss or hearing of the challenges you face because of your vision. Take it as a compliment! It certainly beats hearing “Wow, you’re a miserable mess”. Right?
Response strategy: First of all, you could consider it a win that you are successfully hiding the struggles and challenges nobody knows about. It’s not that you’re ashamed of them, you just don’t have to put it out there 24/7! Think of it this way – when we look at an Olympic gold medalist, we see them proudly wearing their gold medal after crushing their competition. But how often do we think of this athlete in grueling workouts – training and practicing their sport for hours every day. Pushing through the pain, sweat, and fears to be the best they can be. Hmmm? Not that often. Instead, we just see an olympic champion – a freakin’ badass. Perhaps that’s what others are thinking when they say, “Wow, you’re amazing!”. C’mon, own it. Being seen as a freakin’ badass isn’t such a bad thing, is it?
What What? Yep. I’ve heard this one a few times. This is the comment you may hear after a conversation about assistive technology or accessibility features on your smartphone. You may get the overwhelming urge to say “Are you effing kidding me?” and angrily assure them that there is NO good time to go blind! Hey, I totally get it! In fact, I’ve been there, done that debate. But we know what they’re really trying to say, right? The sighted people around us are so amazed by what today’s technology can do for people who are legally blind, (i.e. software programs, magnifiers, CCTVs, wearable and assistive devices, phone apps, etc. etc.) they are sincerely happy for us! Happy that we have so much available to help us be as independent as possible.
Response strategy: Let’s not get all bent out of shape here. As someone who lost her vision 5 years ago, I can now say that I agree with this comment. They are right! Don’t you agree that today’s technology for the blind or visually impaired is amazing? If someone is unfortunately going or has gone blind in 2018, it is a good time. Many things in life are now made accessible and the assistive technology available is insane! If you have been blind for many, many years… I suspect you would agree that losing vision today is better than losing vision 10, 20, 30 or more years ago! So, let’s all calm down and keep our cool.
There are ignorant self-appointed judging a**holes In the parking lots and streets of every city or town. Most likely you will never see this person again so who cares what they think.
You have a handicapped placard because the only entity that matters in this situation, is your state’s department of motor vehicles. The DMV, (and your doctor), recognizes that you have a disability. So, you have that powerful agency in your corner, unlike the idiot who’s passing uninformed judgment.
Response strategy: Just let it go. Ignore it. But if you feel you must say something, you could stop and make this a teachable moment about invisible disabilities. Try not to start the conversation with “Oh. No. No you didn’t. Who the hell do you think you are?”. Well, at least don’t say it out loud!! Honestly, I’m not so sure that a person making such judgmental comments is in the right frame of mind to stop, listen, and learn from you. Use caution if you take this approach.
While living with vision loss can be difficult at times, having strategies for responding to unsolicited comments can help you take these encounters in stride. People will continue to say the darndest things to those living with vision loss, or any disability, including the famous, “Everything happens for a reason my dear.”. – for. the. love. of……. – stop it! – So, keep your head up and your heels high, and celebrate the efforts you put into living your best life every day.
• In regards to comment #1 – Do your own research or check with a medical professional before buying into a diet, product, or service you know nothing about.
• The “Response Strategies” I mention above are just suggestions, nothing more. I am not telling you, or anyone else, how to handle the comments you receive. I only offer these as ideas for you.