You Don't Know, What You Don't Know:

*pictured below: Julie with her glasses on looking forward at the camera.*

For those who are unaware, I am visually impaired. I have Macular Degeneration. My corrected sight as of today is 20/70. I see the world through an opaque lens that has gray and black spots, with fuzzy details. Anything that has a linear design or pattern is wavy and distorted. My sight will get worse and is deteriorating at a rapid pace. I fully disclose my diagnosis and prognosis to anyone who asks. There’s even an app I can show you that will simulate my sight experience. I share my information freely, not because I want to, but because out of all of the disabilities that exist, the B/blind community has one of the highest percentages of public/stranger justification.

Don’t misunderstand, I am a big believer of the expression “You don’t know, what you don’t know”. Ask questions, it is how we learn new things. I encourage them. Sometimes when questions arise, they stick with me for a while. Unfortunately, during my recent conversations, there were a couple that did just that. These are the kind of questions that I don’t always answer in the politest of tones or manner. Quite frankly, most of the time I skate by them with a very rehearsed but flippant comment. I figure if I try to joke with my answer, the other person will see the obvious ridiculousness in the question. That rarely happens and yet, I still attempt it.

Recently, I’ve had several conversations with people of high authority about some suggestions of having a more accessible experience with their business. My meetings began with the question or query I get the most, the ‘Would you be comfortable sharing your story?’ question. This is typically the clarifying question that actually translates in most cases to: ‘How blind are you?’ It is usually followed by and was, in this case, stated twice, “Because I see you are wearing glasses, so, you CAN see something”.

“I can see, but I can’t see. It’s complicated.” ~Blind/Vision Impaired Quote

I tend to answer this in a couple of ways. Most of the time I take the time to educate people on the spectrum of blindness. I talk about individual experiences. Yes, I wear glasses. I have peripheral vision. I want to protect my eyes from the blue light from my computer screens. I wear sunglasses because if the sun is out, it literally hurts. If I attempt to describe my personal vision experience, it either does not translate back very well, they get overwhelmed, or I hear about some grandparent they have with the same thing.

What I don’t share is I also use screen readers, voice over, and an OrCam. I have computer screens that are 28 inches and I sit almost on top of them with the screens magnified by 175-250%. My phone has no less than 12 different apps that assist me daily with reading different fonts, menus, lists, documents, texts, and can tell me how a room is set up, and navigational apps. I get questioned when I am out due to my use of a white cane. If I go out without it, I will bump into things. I literally justify my accessibility and the tools I use every day. For the most part, it is due to not knowing or understanding spectrums are a thing. I have to play this odd ‘How Blind Are You?’ game every damn day. At times it is exhausting having to educate the public.

This brings me to the next query that troubles me. Education exhaustion: “Doesn’t it bother you to have to educate people all the time?” Yep! But here’s the thing no one tells you, being a part of a disabled/handicapped/impaired community comes with this responsibility. It is part and parcel of the deal. While I am a very vocal advocate for myself, I did not get there overnight. My advocacy began 32 years ago, when I gave birth to an autistic child. Then again, with our dyslexic child. Our next one is deaf-blind, and our last has OCD/anxiety. I have 4 children who needed an advocate when they were younger. I’ve spent most of my life advocating for someone I love. Now that person is me. I’m pretty damn good at it. But man, is it exhausting! I have to explain to people that not all blind people meet their stereotypical mindset.

“With great power comes great responsibility.” ~Stan Lee

In my most recent conversation, I joked about being new and a “baby blind person”, only being in year four of my experience (Blind community joke). I mentioned I had mourned the loss of sight, for now. I was in a good place. It was as if my experience was instantly negated. The next few minutes I realized I was getting told/lectured about how being blind from birth and losing sight later in life was different. What I wanted to say was, everyone’s blind experience is different. Even within the same diagnosis. I did not share those things. I did not share the countless hours I spent working with my instructors on how to maneuver the word on my own. How I learned Braille in a year and a half in order to operate elevators, read bathroom signs, and whatever minor Braille items are out in public. I did not cover the amount of technological training I received to use all of the daily life skills I need to run my life and business. I have gone through six pairs of new prescription glasses in less than four years. I have spent time with people in my new community talking in depth about our shared experiences. I simply let the person share the information they had with me and responded with something comparable to I am greatly aware of all of that. Thank you.

Stan Lee said, “With great knowledge comes great power”. I would like to add to that. “Great knowledge needs to be exhaustingly and sometimes painfully shared.” The pain and exhaustion will depend on the experience and who walks away with what.

Let me know your thoughts.