I’m becoming more and more aware of something some sighted people tend to do because I’m legally blind. I don’t think they even realize they do it. They probably don’t know just how annoying and uncomfortable it can be. It’s a “touchy” subject, but I suspect I’m not alone on this one.
I’ve noticed that Some people feel the need to “poke” or “draw” on my arm, hand, or leg with their finger to further describe something during a conversation.
Also, some people feel the need to grab and forcibly pull my hand (or hands) towards something so I will better understand where it is and/or what it feels like.
And then, there are some people feel the need to grab me by the shoulders with both hands and spin me around to point me in the direction I asked to go.
For. the. love.
It’s annoying and uncomfortable.
I have personal boundaries just like you.
Please use your words, not your hands.
Not to sound like a bitch or anything – but, didn’t your mother or kindergarten teacher tell you to “keep your grimy little hands to yourself”? It’s a simple concept and one that should be easy to understand. Especially as grown adults.
I’m pretty sure there are at least a billion or so words in the english language to choose from. All you have to do is string a few of them together to form a sentence that describes a person, place, or thing, and speak. Have you heard of “audio description”? The key word there is “audio”.
When I was a young girl, my friends and I used to play a game. We would take turns drawing simple images with our finger on the back of each other’s shirt. One kid would have to guess what the image was as it was being drawn on their back. Hey, we didn’t have cell phones back then – so, we had to make up our own entertainment. If you grew up in the 70s – you get it, right? Anyway… We had to use our imagination and visualize the image the other person was drawing on us. Yep. Oodles of fun as a kid. But now, as an adult, not. so. much. I would prefer that you speak to me, not draw on me.
Since losing my vision, I’m the first one to reach out to touch and feel something. I’m like a naughty little toddler that has to touch everything! Just ask my kids after a trip to Target – they would agree! I use my hands to gather the tactile information I can not see. I might feel an object or the surface of something for size, shape or texture info. I might feel around on top of a table or countertop to find something – like a glass, a bowl, my phone, or a cork to a bottle of a fine cabernet, etc. etc. And you guys, I might have, just maybe, mistakenly felt up a live human or two. I mean, is it a human or a mannequin? The struggle is so damn real!
I need you to understand that my hands serve as my eyes. Notice how I use the word “MY’? Yeah. MY hands, not yours. Grabbing and putting my hands to place them somewhere or on something is not ok with me. Me, myself, and I, will use my own hands as I SEE fit. (No pun intended!) I would prefer that you speak to me, not man-HAND-el me.
And lastly, if I ask which way something is located, I want directions. Please suppress the urge to grab and spin my whole body around until I am facing the direction I want to go. I’m all for fun and games, but most likely this is not the time!! I would prefer that you speak to me, not spin me. If I’m not understanding you, then for sh*t sake, offer up your elbow and guide me!
As always, I am so thankful that you all do what you feel you need to do to describe and show me the things I can not see. I really do. It is not my intention to discourage anyone from offering assistance to me, or to any other person with a disability. Nope. But. for. the. love… try to resist poking, drawing, grabbing, pulling, or spinning me for descriptive purposes. It’s usually not necessary, or appreciated without my consent. Please use your words. Lots of deliciously descriptive words. Because quite frankly my dear, I’m not a fan of your hands!
P.S. I don’t speak for every legally blind person here. So, if you don’t mind the whole touchy-feely-pokey-grabbing-spinning thing — well, to each his own! xx
Recently, my daughter asked me a question. She wanted to know what one thing bothers me the most since losing my vision. One thing? Is there just one thing? I thought about it and this is what we talked about.
We talked about not being able to drive. Not being able to drive them, (my kids), to school, gymnastics, soccer, or whatever else strikes my fancy. I wish I could go to appointments or run my own errands based on MY schedule, instead of someone else’s day or the local bus schedule.
We talked about not being able to read things. Not just books, but recipes, price tags, sizes, labels in department and grocery stores, or OTC and prescription bottles. Reading is a part of so many tasks in everyday life.
We talked about how people don’t always trust me. Can I be trusted about what outfit looks great? Sometimes. Can I be trusted to follow a recipe? Sometimes. Can I be trusted to arrange things in my house? I say, Yes. Well, for the most part – I mean, it is MY house. And if I arrange things, I will know where the heck they are! I have so little control over my life. I want to control what I can.
We talked about what really bothers me beyond the driving, reading, and trust. It’s the “loss of control” I feel. I can’t control being a diabetic, but I can control (to varying degrees of success) my blood sugar level. But, Lebers Hereditary Optic Neuropathy (LHON) leaves me no control over what I see. Sure, I can magnify everything, but that’s not me. And as a result, I can’t drive, and I can’t read without magnification, voiceover, an assistive technology app or device. And don’t even get me started on my color perception issues. That also adds to the lack of control.
So, it’s really not just one thing. I think the loss of my independence as a fully sighted person would sum it up. As that is what most often comes to mind.
Dena is a wife and mother living in Jacksonville, North Carolina. She started losing her vision in August 2015, right about the time she was turning 40. After a very long medical mystery tour of doctors and specialists, she was finally diagnosed with LHON via a DNA blood test in April 2016.
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!