I recently had the pleasure of seeing my cousin who was on a business trip in Houston. It was a real treat to catch up. Since most of my family live in Europe it is not everyday I get to spend time with them. During our visit he got to meet Nash for the first time. He brought up Nash’s vision and indicated he thought his vision looked good as he knew it was a concern of ours. He is not the only one to make this comment – people, strangers and friends have said the same thing. I am not saying it is a bad thing but how can you tell how good someone’s vision is just by looking at them? I really have no idea the true extent of Nash’s vision. Just the other day my little wild man came crawling out at full speed from the bathroom whilst I was quietly doing some ironing (yes I know I lead a thrilling life). He stopped, looked up and stared. He made a grunting noise (which he often does when he can’t find you) and when I responded he smiled my way and proceeded to crawl towards me. Now I was a good 10 feet away and the behavior he displayed showed me that although he could maybe see something he wasn’t entirely sure it was me. All these little interactions got me thinking about what a person with Albinism experiences visually.

I mentioned previously the characteristics of Albinism and how it affects vision. This time, I wanted to get it from the horse’s mouth, so to speak, so I asked if anyone in an Albinism group I am part of would like to share their experiences. If I could ask Nash I would but the only word he repeats over and over again is “cracker” in his best pirate voice. I think he only applies it to food but it is hard to tell.

Here is some of the feedback I got from the Albinism group:

“My vision is 20/400 uncorrected and 20/200 best corrected. At my corrected vision, I see at 20 feet what perfect vision people see two football fields away. It can also be described as the difference between copying off a picture using the weakest print possible compared to wanting a perfect pic which shows the blurriness vs. no blurry, I’ve yet to come up with a good example for my astigmatism (sp) and I have excellent peripheral (sp) vision and color vision.”

“If I can get things close enough I can usually see them. Imagine a picture of a street sign that is too far away to read. That’s how my vision seems; there isn’t enough detail. If I could get close enough to the sign I could read it. That’s why magnification works better for us. And glare scatters a lot of light, so anything that takes away glare like sunglasses or window tint helps make things more clear. I can see things but I can’t see details unless I am close. And any busy image makes it difficult for me to pick out details for example, a black and white cat in partial shade may blend in with the patches of sunlight and shade. That’s just a small glimpse into my personal experience”

“Your child can see well enough to fool people into thinking they don’t have a vision deficit.”

“My vision is 20/300 in both eyes. I have an astigmatism, and photophobia. I use a monocular, 5x magnifying glass, and a cane (yes a cane). It’s a personal and safety reason.

Just like those without a visual impairment, those with one grow up learning what things are. For me, I have to burst a persons personal bubble to see what they look like comfortably. It’s hard to describe what people look like (and I draw lol). An example I can give you is, say you’re looking at a tree 200 ft away. You know (probably) that it’s a tree, but you can’t see any defining traits. You know what it is because you’ve experienced life.

For blackboards, I hated them. Before I received all of my assistive technology, I would sit on my knees in front of a blackboard, moving every so often to read the next word (yay photophobia!). After I got a monocular, I could sit in the front row (like normal). I’d hold it up to my left eye, read, put it down to write (I’m left-handed), and repeat the process. I got a CCTV (the kind you can point at a board, and in college that made things much easier.

As for picking out a face in a crowd, I haven’t been able to do it yet, but I remain optimistic. I detest looking for people in crowds because it takes a long time, but it can be done. I have to remember what the person is wearing, height, etc. For example, when I look for my mom, I look for a dark-skinned woman, whatever she’s wearing, someone around my height, and a purse worn across her body.”

“I never could see the blackboard. The teachers always told me to walk up as close as I needed to but that was a little embarrassing as I was so incredibly shy. I have a lot of difficulty picking someone out in a crowd. I try to remember what they are wearing and look for distinctive features like body shape or hair style, etc. I drive with bioptics, but I tend to drive as little as possible because it takes an extra effort to discern what I’m looking at or to find the entrance to a new place or the turn for a road I’m not familiar with. I’m a nurse, which is a very hands-on, in-your-face job so my patients tend not to notice my vision problems initially. The recent conversion to practically 99% electronic records has helped tremendously. I never enjoyed trying to read doctors’ handwriting”

“My vision is 20/200 uncorrected and 20/70 corrected. I wear rigid contacts which I find helps to slow the nystagmus just a little. I drive without optics but a GPS is my best friend otherwise I would be doing U-turns all day long when going somewhere new. I cannot read sign names until I am almost under them. As far as watching TV, my couch is about 10 feet from the screen and I don’t have an issue seeing faces and images, I definitely cannot see subtitles unless I’m at least one foot away from the screen. As far as picking someone out in a crowd, it is very difficult. I rely on familiarity of height, weight, skin color, hair color and outfits. Oh and I depend on my hearing as well. So I guess other senses are heightened as well as skills are learned to accommodate for the low vision.”

Each one of these people have different corrected and uncorrected vision yet all show similarities in their descriptions of how they see. Bright lights or too much darkness can affect the overall picture the person sees impairing vision even more. Tasks such as looking at a blackboard or projector screen is difficult as well as picking out faces from a distance. Most people cannot drive although it depends on their corrected vision and the laws pertaining to driving in the state/country they live in. I still wonder what its like reading a book, watching a movie at the theatre, riding a bike and how easy is it to navigate the grocery store with bright lights and signs that hang high above your head.

I guess one day when Nash is more vocal we will have a better idea of how he views the world. Nash’s ophthalmologist informed us that we wouldn’t really know the full extent of his visual impairment until he is roughly 7 years of age so for now we just have to enjoy watching him learn to navigate this world in his own time. I think the comment “Your child can see well enough to fool people into thinking they don’t have a vision deficit.” sums up how Nash’s life will be. It looks like he is doing it already.