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Success Is Beyond Vision- A Real Story!

As someone who’s losing her sight to Retinitis Pigmentosa (RP), I am faced with many questions every day. I have Usher syndrome, which couples deafness and gradual vision loss, so I’m not a representative of the average blind and low-vision individual.

That being said, as someone who has moved from sighted into legal blindness, I’ve noticed certain interesting changes in my lifestyle and how people treat me. This isn’t a subject that can be explained briefly, so please forgive me in advance for my lengthiness.

What the Blind See

People seem to think blindness as binary: You’re either completely sighted or completely blind. The truth is that there are infinite ways to be legally blind.

Not just is there a large range of sightedness between fully sighted and completely blind, but there are a lot of variations within that range. Some blind people have acuity issues, others have blind spots but an otherwise clear vision. Many are somewhere in between. Few are completely blind.

So, what I see, is unique to me and my condition. No other blind person will see as I do.

My condition causes night blindness, gradual peripheral vision loss, and in its advanced stages macular issues. Even though it’s a progressive condition, it progresses differently for everyone.

My lower and upper fields of vision have been gone since my early to mid teens. I have blind spots in the sides of my vision, but I can detect light and movement in my far peripheries. The funny thing is that I don’t actually see the blind spots. My brain has reconfigured my visual perception to skip over the blind spots, so things actually seem as if I have 180-degree vision. Based on my last field test, I have somewhere between 25 and 35 degrees of vision, so my brain is constantly tricking me.

Two years ago, my RP began affecting my macula (the central part of the eye), which is a somewhat unusual development at this stage. The macula effects color discrimination and visual acuity. As of right now, I have about 20/150 in the left eye and 20/300 in the right, both uncorrectable by glasses.

Everything seems out of focus. If a person is standing more than 2 feet away from me, his or her face is as blurry as in a Monet painting. Typically, I identify a familiar person by his silhouette and the way he walks (since I can’t recognize voices with much precision). Even up close, I can’t see fine details like smaller scars and roughness on the skin, so all people look like they have amazing skin.

Bright light makes my vision worse. It seems like a thin white film is covering everything, making light-colored things almost glow. Oftentimes, a harsh direct light will create shadows that confuse me, and the world becomes too visually complicated. Certain shadows might look like steps to me since my distance perception is basically zero.

The situation is similar for dim places. Everything goes gray (or black if it’s quite dark). I can’t see depth or shadows in the night; it’s just one big wall of black dotted by streetlights.

I can, however, see quite well under perfect conditions: an evenly distributed light of medium intensity with simple and high-contrast items plus relatively stationary people and things. But, life rarely provides perfect conditions.

Navigating the World With Blurry Restricted Vision

There are three main navigation techniques that blind and low-vision folks use: a white cane, seeing-eye animal, or nothing. There are some political and personal preferences involved in one’s choice.

Many people who don’t have vision loss push me to get a dog. They seem to feel more comfortable with the idea of a seeing-eye dog. Some of them even think that it’s a cool way to get a very well-trained pet. It’s not that simple.

A white cane can be put away at any time. A white cane doesn’t shed, poop, require vet visits, or develop a mind of its own. But nobody wants to pet a cane, either. Seeing-eye dogs are wonderful but have a lot of overhead. It’s a personal choice dependent on one’s lifestyle and needs.

As simple as the white cane may be, it still requires training. There are different holds, arcs, and contacts. You can hold and move it in different ways, depending on how many people are around you and your familiarity of the area, among other factors. The white cane gives you a lot of information, but there are a few things that get me: chairs and tables (my cane simply slips underneath), overhanging brush (again, my cane isn’t high enough), and cracks (sometimes my cane will bounce back, which is annoying).

You learn how to map out the world differently. Instead of reading the street signs, you count the number of intersections. You stop using the pedestrian signals to know when to cross the street but look (or listen for) the traffic flow. (Many blind and low vision folks also use GPS systems, but it’s usually too noisy for me to hear the instructions, so I don’t use GPS very often.) Landmarks, such as a distinctive building or a fire hydrant orient you to the world around you. Memory becomes crucial here.

Sometimes I use a human guide. I hate to do this, not just because it limits my independence, but because most people … are terrible at it. They’ll grab you and proceed to drag you, making you stumble and become disoriented. They’ll forget to stop before a step, so you may fall. Even with instruction, guiding someone else is an intuitive exercise that not a lot of people have the talent for.

How the Blind Read

Since I’m deaf-blind, this is a different endeavor for me than it is for the average blind or low-vision individual.

I remember when I was sitting with a low-vision specialist. She kept telling me that I should use the text-to-speech software on my computer. “But I’m deaf, so … wouldn’t Braille be better?” I asked her. “You can hear me, so you can hear the computer.” (I have a cochlear implant, so I can hold a conversation reasonably well, but it’s not perfect.) I explained to her that it wouldn’t be easy for me, and I’d probably end up missing words and get tired, but she still insisted that it was the best course.

I ignored her and learned Braille. Right now I’m about 60 to 70 percent of my old reading speed, and I’m pretty proud of myself.

My point is that people can be dogmatic when it comes to alternative reading techniques. Some people will advocate that a person with low vision should read visually, regardless of how slow or difficult it is. Others will advocate auditory-only training since it provides most blind and low-vision folks with the fastest transitions. So there are some politics involved. Each blind and low-vision individual should choose whichever reading technique fits his or her needs the best: visual, auditory, or Braille.

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