Living Disabled Is Hard Enough. We Have to Live With Trolls, Too

It’s not bad enough we have to experience this stuff 24/7?

Recently, I came across a great story written by Nicola Fisher. It’s about her husband, who is, like me, blind.

Specifically, it’s about the response from people around the world to a story done on him by the BBC, because he’s not only living in darkness, but is a woodturner, as well.

She discusses some of the hateful things people have said about her husband, Chris, and it moved me to talk about a bit of the crud I’ve had to deal with, as well.

Chris was born sighted but lost his vision over time. My experience is similar, having had normal sight until I was in my late 30s, and losing it was a devastating blow for me.

I went from being able to do things I loved to do — especially art and driving — to being stuck in a shell for a long number of years. I didn’t know how to get myself out of it. I couldn’t do anything to make my vision better again. It left me with what I had, and I had to adapt or die.

We have to grieve for the loss of the senses.

Can you understand something like that, dear friend? It’s a hollow space in the head, and, for a while, all you can do is curse the world and wish it’d all go away.

A deep grief accompanies it. I think, having experienced the loss of a sense — in many ways the most important one — as well as losing people to the grave, having a part of yourself cut off like that leads to a more difficult form of grief.

Not to downplay anyone’s loss, mind. But it hits differently when it’s something that cuts you off from the world completely.

Having it happen at all is tough enough. Dealing with people afterward can destroy any dignity you might have left.

Enter the trolls and the people who judge.

I’ll try to state this as best I can without sounding too insulting or inflammatory…

Blind is blind. There are differing degrees of it, but blindness in any capacity is ravaging, especially if you were once sighted.

I have a tiny bit of acuity remaining to me. I have my monitor on an arm, which allows me to get it to within an inch of my face. With tight squints and a lot of pain, I can sometimes make out snippets of words on the screen.

The rest of the world is whiteness to me. Because of the shape and texture of my corneas, and the massive amount of scarring on top, my brain cannot interpret the data that comes in. Everything past an inch in front of my face is gone.

I haven’t seen what my children look like in years. I have no idea what my wife really looks like anymore. The only thing I have remaining to me in either case are the memories, and even those have faded a lot with time.

I fear going anywhere alone, because I know what happens to me when I do. I’m a danger to myself and others.

And yet, people think they have the right to judge me and my coherence of vision. The amount of individuals I’ve talked to who have asked about my blindness, and then say, “Oh so you’re only legally blind…” is astounding.

Sure. If you want to call what I have left “legally blind,” fine. But blind is blind. Like Nicola’s husband Chris, I am cut off from the world. His is darkness, mine is light.

“Blindness doesn’t work like that.”

One commenter on the video Nicola mentioned said,

“His eyes are moving, focusing on the camera, then jumping to the reporter. This is not how blind people’s eyes usually work.”

She was nicer in response to that than I. More power to her. I’ll say what came to my mind when I heard it.

Your comment, and assumptions, shows how ridiculously out of comprehension and awareness you really are. Talk about being blind…

When you live with a condition 24/7/365, and that state of being determines your survival, you learn real swiftly how to deal with your reality.

Never judge or make assumptions about what people can, and can’t do, when they’re forced to adapt to keep living.

Unless a blind person is also deaf, they can still instinctively follow the cues of sounds. If I hear someone talking, I will face them, because that’s what I grew up doing. For the first 38 years of my life, if I heard a sound, I responded to it by looking.

Is it so complex to understand that’s how we humans are hard wired to react? Is it tricky to conceive there are mechanisms in place that make involuntary movements and reactions a thing?

Even those who are born into the darkness react in predictable ways most of the time. What doesn’t happen by instinct happens with learned behaviors and responses.

An alternative way to understand the concept is to realize when a sense is cut off, the others become much more prominent. The sense of hearing, for instance, becomes extremely important.

I have a fan running in my room all the time. Day or night, that thing’s letting out its whir of life. If someone comes into the room, I know it, sighted or not, because the sound of it changes.

He was lying about being blind because he wouldn’t change it?

This is another thing I have dealt with over the years.

I’ve become accustomed to things the way they are. I can function, in some ways, better than I did before losing my sight.

I also joke that the universe decided to make me this way so I wouldn’t take over the world.

Being blind has given me a chance to spend every waking moment with my wife, who is also disabled. We get the joy of being around each other. She’s my biggest cheerleader, my best friend, and my constant companion.

If I were to regain my sight, our lives together would change. Would it be for the better? Perhaps, in some ways. But I cannot deny I would regret the loss of being together with her as much.

That’s just one reason I wouldn’t change things. There are others, too.

They’re looking at it from their own perspective — one of fear.

It’s hard to understand, I think, for people who have never experienced the loss of one of their senses.

The problem is, though, they’re looking at it from a reversed perspective. They are subconsciously “seeing it” through the lens of someone who has yet to experience it. They are in fear of it in that moment.

People like Chris and I? We’ve already gone through it. We’re on the other side of it and living the best lives we can despite — and in spite — of the loss. The fear of it is gone, because it’s already happened.

Been there, done that. Lost the tee shirt because I couldn’t find it anymore.

You can’t judge someone based on your own narrow perspective. There’s a lot more to the story than that.

I hope this helps you “see” that there are different people with unique abilities, and we all need to have open eyes for that diversity.

Thank you for being you.

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