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Posts tagged ‘Being visually disabled. Low vision’

Jun 3

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Snark

Learning to not walk funny is a process, and it is taking hours of focused training time. All of this is done in the home. I exercise on the treadmill, and I stand by a chair to do some of the work. I’m up to eight minutes on the treadmill, and it is still taking ten minutes per session for the rest of it. The goal is to get up to thirty minutes of walking time per day. At the ten-minute point I’ll try to leap to fifteen minutes twice per day, and then up to thirty minutes in one session per day.  

The truth is that this is eating my day.

Ticktock, the clock goes round, and as it does, I still walk funny. I’ve asked the physical therapist if she sees it, and she says no. I know that when I get up from a chair, I walk goofy. So, I don’t want to sit that long. I think I’m becoming impatient with this process. When I think about it, I have to admit that it is better to be here at home than stuck in a rehab center. I can do this at home.

I’m caught up with some things, still catching up on taxes, and now I find myself attempting to figure out how to get my hair cut and my hearing aids checked. When I stop to think about things, sending me home was needed, and I need to have a driver on call until I can really walk again. Being mostly blind and not walking in a steady manner is not a good combination. Not walking well shows me how bad my vision is. It is scary to see it.

When I take notice of what it is I’m not able to see, and I allow myself to think about what fully sighted people see, I cringe. What I see when I look is the places I can’t walk safely. This last week, while heading home from the UMC in Utrecht, I was confronted with a construction mess. For sighted people who could see, the process was easy. I had to figure out that I couldn’t get to the tram and would have to take the bus down one stop, get off, and then walk to where the trams pulled in. I got lucky, and people were helpful. The shock of it all is never a good thing. Someone with Usher syndrome told me that for her, every time there was more vision loss, there was more trauma.

While I’m not affected by Usher, I do understand the risks involved in going out when you can’t see or hear as others do. It is important for me to be steady on my feet, and to get back into a safe walking mode.

As much as I post on this—and I may sound like a recording or a broken record—I have to say it again: being disabled is traumatizing.

Last week I had to call for help with something. The woman at the other end said, “Perhaps you can ask your neighbor for help.” I replied that I’d done that earlier in the week, and that while my neighbors are kind to me, I am asking you for help.

G: How would you feel if this was said to you constantly?

Rep: Oh, I understand.

G: No, you don’t.

She had nothing to say in response. She had not a clue about what I deal with daily in an abled world as a disabled woman. She never will, unless it happens to her or to someone she cares about. I hope that someday, when she’s still got all her marbles, she’s bugged by her neighbor.

Dec 11

Faces in the Light

This post is a project to see if I can describe what it is I see (and can’t see) clearly. Would you please let me know with a comment if I was successful?

Thank you,

Gail

P.S: Please scroll down to see a diagram of the eye.


When you look at a face, you most likely see the entire face. The details are clear: eye and hair color, nose, and ears all stand out as a part of the person. You can tell who they are by how they appear to you. You magically memorize things about this person’s face so that the next time you see them you may recognize them. That tiny computer in your head does the job it is meant to do. You bring up their name, and with it many other things regarding this person. You can say that you know this person. But, what if it doesn’t work in this manner? What if your brain, or more specifically, your eyes, can’t process this information normally?

What if when you see someone, you can’t recall or even memorize the face? What if your software is not in working order? What do you do then? You are in the dark with this face, even though there is plenty of light around the person.

When we are babies we begin developing facial recognition. Our brains slowly discard the skills we will not need. For instance, humans need to see human faces vs. monkey faces. As a baby you are capable of viewing and distinguishing all faces, and you learn that because you don’t see monkeys every day, the brain can now discard higher levels of monkey software because it won’t be using it much. Knowing what monkeys look like is good enough. The brain has learned that it does need to focus on humans, so that is where the brain will focus development.

Now, the brain needs to understand many things about human faces, so the brain develops these skills. By the time the person is a bouncy one-year-old, the brain has a doctorate in facial recognition. BUT, what if in the process of developing the brain there is damage and critical steps are not completed properly? This is what happens when there is a lack of visual development.

What Doesn’t Work?

From this blog you know that I was born with cataracts (I had no light perception due to the clouded lenses), and that on my first birthday I was operated on and given sight in my right eye. Six weeks later the left eye was also operated on. The surgeon did a beautiful job!!!! So, I was then a happy, sighted one-year-old who was simply a bit behind developmentally.

After the surgery I was given glasses. At age 14, I began to wear contact lenses. At the present, I wear only one lens due to the fact that my right eye is not able to be helped by the lens. (The cornea is no longer the proper shape.) While they could do some surgery, it is a risk I am not willing to take. Surgery would put me at risk for bleeds in my retina, which could lead to blindness in that eye. So, back to childhood…

Because there was no vision during the first year of my life, several critical phases of development could not complete properly. Muscles in my eyes failed to learn to strengthen themselves, and nystagmus (rapid eye movement) came about. I also did not develop full facial recognition during this time. In later years the PXE (Pseudoxanthoma Elasticum) decided to contribute a bleed in the retina and reduce what vision I had. This is why I have only 12% of my vision left. The percentage is a far better description of what I really see. It isn’t about distance but rather about what I can really see in a comprehensive manner. So if you have 100% of your vision and can see something easily, chances are that I’ll have to blow it up and make it BIG, or stand closer to the object in order to see it.

What Works? How Do I See Things and How Do I Function Best?

When a visually impaired person enters a room, they don’t really survey the room as you do. They look for seating. They do this because this is of great urgency for them. This doesn’t mean that they will get the best seat; they get a seat. After they have a seat, they will then proceed to check the room out. There is a problem with this process and that is that it might not yield the best seat for their needs. The best seat for me is a seat facing away from the window. With my back to the window there is no glare for me to deal with. This means that I can see lit faces instead of dark faces. The best room is also well-lit with both ceiling lighting and lights that shine upwards. The room should have no shadows. The number I use is a combined total of 1500 lux. The equation works out to 1250 from the ceiling and 250 upwards. Warm light is better than cool lighting. Those are the basics.

Seeing your face is important to me. I wish I could recognize you easily, but for me the process is just that: a process. For me to recognize you, I need to spend time with you; I’d say two or three hours will do. I need to have those hours over a period of time. Doing it all at once doesn’t get my brain to learn about you. As I study your face, I acquaint myself with who you are physically. After several hours, I am better able to recognize you.

If you cut your hair, change your hair color, gain or lose weight, I may not know you at first. You will need to remind me who you are. Think of it as having to do a software update. The question of who is using the voice arises, and the answer to this is that I can only depend on the voice as much as I hear. So, I use a combination of things. Because I see better than I can hear (reliably), I use my vision to learn and understand, and my hearing becomes the secondary sense involved.

I’ve shared a great deal of information with you. I suspect that many of you out there will be wondering, What do I do with this? What am I supposed to do when I’m around you? I’ll answer that with this: A simple kindness goes a long way towards true understanding. You can make sure that I recognize you. That is a great beginning.