Saturday, November 06, 2010


In a moment, I'm going to ask you to do something. And I would appreciate it if you'd just humor me. It's important to the story. It'll give you perspective - and don't we all need a new perspective every once in awhile?


1) Please take your left hand and cover your left eye so that you are unable to see out of that eye. Do not cover both eyes as you will not be able to continue reading the next instruction.

2) With your right hand, make a sort of telescope - sort of open-fist like - as if you were making the American Sign Language sign for the letter "o". Like this:

Clip art courtesy of All-Free Download

3) Hold your "telescope" up to your right eye and look through it.

What do you see?

Not much, right?

If you'd like even more perspective, at your own risk, get up and walk around and maybe take some stairs1. While you are doing this, consider how your balance feels, how little depth perception you have, how vulnerable you might feel if you were not in the comfort of your own home.


Imagine going to the grocery store, the mall, the airport, a buffet, on a walk with the ability only to see what appears through that narrow lens. Think about what you encounter in those places. There are aisle displays, small children, low hanging branches, carts, racks, curbs, garbage cans, signs on poles, people in a hurry, people not in a hurry, people coming from the opposite direction, up from behind, in front, cutting across your path.

What you are actually seeing - or rather, how much you are seeing - and experiencing is what my mom lives with all the time.

I'm not kidding.

Betsy2 has been blind, as far as she knows, her entire life. No one realized it, however, until she was 12 and was learning to play basketball during PE class at her school. I believe it was her teacher who recommended her parents take her to an eye doctor.

It turns out, Betsy has a genetic condition called "Optic Nerve Head Drusen". Only 1% of the population is believed to be afflicted with this particular condition and it rarely causes blindness. All her siblings have the condition. 3 out of the 4 of them are blind. Her children - meaning my own siblings and me - all have drusen. Only 1 of us has been visually impacted. I am lucky. I am not the one.

Photo courtesy of Columbia University - the yellow area is the optic nerve head and should be smooth and circular

Being blind has never stopped her from doing anything she's wanted to do...except maybe playing basketball. She is an accomplished musician, a business professional, a seasoned traveler. She drove up until 1991 when her eye doctor finally told her he was not going to tell her to stop driving but wanted to know what streets she took so he could stay off them. If the thought of that doesn't terrify you, nothing will.

She has tromped all over the world. From the beaches of Zihuatenejo, to the mountains and jungles of Nepal, over the hobbit hills of New Zealand, and through the streets of countless European cities, Betsy has trekked, shopped, safari'd, practiced yoga, took photographs (blurry, crooked ones *laughing*), and has just generally enjoyed her life and her opportunities.

She does not use a cane.

If you were to see her, you'd have no idea she is most likely not seeing you. Only rarely, if she's particularly tired...or know, has been drinking with her daughter (ahem), her blind eye will appear a little askew. Otherwise, there is no visual cue to others that she cannot see.

She and I have talked about this. Particularly as she gets older and slower, more cautious, it's become even more difficult for her to navigate just her familiar surroundings and it seems like people have become all that much more aggressive and self-absorbed when they are out in public...impatient with someone they perceive to be slow, in their way. You know, because it's all about them and it's all a conspiracy.

I've seen her practically bowled over by travelers in a hurry to get through security so that they can wait an hour and a half for a plane. I've seen people fire off dirty looks, heard them harumph at her, or say, "watch where you're going".

Believe me, she's trying. Much harder than you are. She's trying to keep your children safe - children you let dart in and out of the paths of everyone because you're too busy talking on your cell phone to bother. She's trying to keep herself safe, trying not to break any bones - which she's done - because she didn't see that curb coming or that fire hydrant or that suitcase you've left sitting unattended. She's trying to keep her hand on my elbow to guide her while you push and bump into her, jostle her around, get past her...and me.

So, we've talked about it. The cane. Not because she needs it. Because other people do. Because unless there is some cue indicating something is different about the situation, people are mean, impatient, rude, thoughtless prats. And, in turn, I get mean and rude. I cannot tell you how many times I've felt angry vile words rising in my throat when someone comes barreling down on us. I want to stop them, shake them, and yell in their faces, "SHE CAN'T SEE YOU, ASSHOLE!!!"

It's frustrating. It's disheartening. It's terrifying to think she might get hurt because of someone else's thoughtlessness. I love my mom. I love spending time with my mom. I want everyone I know to spend time with my mom. Because she ROCKS!

And I want to protect her.

I can't get anyone else to change their behavior or to heighten their awareness about the special needs of others. So maybe she'll get the cane and change her own behavior slightly to help others help her.

Until then, if you see these ladies?

You might want to try offering your assistance rather than running us down.

1: Please do not fall and break your neck. Jane In Her Infinite Wisdom is not responsible for injury or death related to this experiment.

2: Yes, I do call my mom by her given name most of the time. This is not an implication that I do not love my mother. I do. Very much. The reason I started to call her "Betsy" 30 years ago is because when we're out in public and she's trying her best just to see what's around her, she doesn't pay attention to the call for "Mom" as that could be coming from any number of sources. If she hears "Betsy" she knows to stop, pay attention, look for and locate the source of the call. I do, on occasion, in this blog, refer to her as Blind Betsy. This is simply a differentiation between the Mom Betsy and my friend, Bomb Betsy, and there is no disrespect intended. I also call my dad "Dave" but he hates it...which is probably why I do it.

A year ago: If a phone rings and nobody's home to answer it, does it still ring?


Michael said...

As a member of the human race I'd like apologize for so many of us being insensitive jerks. If just 1% of the people in the world on any given day stopped and looked at the person next to them and thought about that person as a real person with fears and problems and feelings, the world would be a heck of a better place.

Ryan M. Ferris said...

I appreciate this post. ONHD isn't apparent to the external world, like many forms of partial blindness. Our infinitely plastic mind compensates for our disability, yet there are costs and limits that others can't understand. ONHD (with blindness) is a disease in need of a cure. But there isn't one. For the most part you invent your interface with world as a partially blind member of our species. That interface is existentially different than those who are fully blinded or fully sighted.