I want to go in depth about my vision impairment in case anyone is curious and would like to know more about my disability. I’m well aware that asking someone about their disability is not the most comfortable thing, so hopefully this helps and might shed some light on not only my life, but on the lives of others with disabilities or impairments.
I am very open about my vision and patient/comfortable with questions. I understand that invisible disabilities such as mine are incredibly difficult to understand, and I’d like for people to understand as much as possible. Typically the only questions I don’t respond so kindly to are: “how many fingers am I holding up?” and “do you realize how close you hold things to your face?”.
My impairment is called Stargardt’s Disease and it is a rare, juvenile form of macular degeneration. About 1 in 20,000 people have it, so I am one of zero people I know personally with this disease. It’s a genetic mutation that typically kicks in around age 12(11 in my case) that causes holes to appear in the central vision. The confusing part is that I do not see these holes and my vision is never blurry. I promise I do not see the world through Swiss cheese holes. My best attempt to explain it is to compare it to how things look to regular-sighted people when they’re simply too far away to see clearly.
My mind fills in these holes, so I subconsciously look around them. This is why it will often seem like I’m looking above you or to the side of you when I’m speaking directly fo you. Yes, I’m aware of it, and I’m sorry if you’re a stickler for eye contact. If I make eye contact, your face will disappear, so it’s not likely that I’ll gaze into your eyes often.
My vision slowly deteriorated to 20/200(20/20 is perfect), which is legally “blind”. It should not worsen. I will not go completely blind. However, there is no treatment or correction. Glasses and contacts merely have the same effect on me as windex does on a window.
I often think the disease sounds more severe than it truly is. Don’t get me wrong, I am considered severely disabled and it makes most things in life much more difficult, but I live as “normally” as possible. I am hindered most when trying to read. Signs, menus, papers, books, and electronics give me the most difficulty.
As “normally” as I try to live, I am undoubtedly different in many ways than most people. I’ve had to learn to adapt and live with just a fraction of a main sense for the second half of my life. I’m certain I miss social cues, facial expressions, and many other things of which I’m unaware; therefore I’m a rather intuitive and empathetic person. Thankfully, I was gifted with the ability to understand, communicate with and read people very well. Clearly my vision does not hinder my ability to be modest.
Now, here’s my little FAQ and “Things I Wish Everyone Knew” section:
1) Can you drive? Legally, yes. I had a pair of biopic lenses(glasses with a telescope bar connected) that allowed me to pinpoint certain things quickly enough to be able to drive. However, I was involved in a very bad accident where my car caught on fire, so my glasses became ash and I’ve since decided I feel safer not driving. I never felt incredibly comfortable anyway.
2) How can you see technology? Pixels on computers do not work for me, but iPads and iPhones are different. They’re clearer and I can hold them as close as I’d like and in front of the best parts of my eyes. I can enlarge them by hand and scan things perfectly. The text can also be enlarged greatly.
3) How come you don’t seem that blind? I am not making it up. I’ve lived this way for so long that I don’t feel like I am impaired. I am not fully blind, so most times I feel just like everyone else. I’ve learned to live with it to the point where it is very undetectable.
4) Do you dream with full sight? I highly doubt it. I feel like it would be pretty noticeable if I did.
~Things I Wish Everyone Knew~
1) I often introduce myself as a visually impaired person, but I do this only so you know immediately. I despise being defined by my disability, as it is only part of who I am, and a very unpleasant part at that. It is not WHO I am. I am not “that blind girl”.
2) Identifying yourself when you’re speaking to me from a distance is incredibly helpful. It’s also helpful in these situations to let me know that you’re speaking to me and not the person beside me. I’m not ignoring you, I just can’t tell that you’re looking at me unless you’re pretty close to me.
3) You’re basically, and innocently, slapping me in the face by saying “I get it, I’m so blind without my glasses/contacts”.
4) I want to be treated equally but also considerately. Empathy and pity are too often confused, and reluctance to offend can often be misconstrued as indifference to or even dismissal of my condition.
5) No two visually impaired people experience the same difficulties.
6) I understand it’s bewildering sometimes to learn that I can’t see a specific thing, but sometimes that bewilderment makes me feel like an alien.
7) I’d much rather be asked questions than be avoided.
8) “What exactly do you see?” is as easy to answer as “what is the meaning of life?”.
9) Yes, I get really down sometimes. It can feel very isolating to be impaired. I come across like I handle it amazingly well, but I don’t always handle it well at all and it’s okay.
10) Bad and good vision days are a very real thing.
11) Jokes are good in moderation and I’m sorry, but I’m always allowed to joke about it more than you are.
12) I am super understanding about others in regard to my vision, but it can be exhausting to always feel like the more understanding person.
There’s so much more I could say, but I won’t flatter myself by pretending everyone cares overly much about my situation. Hopefully this benefits someone in some way or appeases any curiosity.