This question seems like such a common occurrence. It most always follows the realization that we have a visual impairment. Honestly, it IS a fair question. I want to know the same thing when I meet someone with a visual impairment. I find it fascinating to understand how someone sees or hears or thinks. I view this question positively. If someone is curious and genuinely wants to understand, why not take the opportunity to teach? So guys, please, take pride in explaining this one, and don’t be offended or upset.
I believe we need a quick (and short) lesson on the eye and how it works to begin our discussion. The parts of the eye that we can see are called the Cornea (the clear outer layer), Iris (the colored part of the eye, Pupil (the center of the Iris), and Sclera (the white part). Behind these, we have the Lens, and behind that is the Vitreous Fluid that fills our eye and gives it stability. In the back of our eye lies the Retina. Light enters the cornea and pupil, hits the lens, is directed through the vitreous fluid and onto the Retina at the back of the eye. From the Retina, light is converted into electric signals through the Optic Nerve behind our eyes and sent to our brain. Our brain then creates the beautiful pictures that we see before us. Our eyes are well-oiled machines (metaphorically speaking, of course). The only problem with this is that if one part of this smoothly running machine is working in-correctly, we have a problem.
Numerous eye conditions can result from both Ocular Albinism and Oculocutaneous Albinism.
In both types of Albinism, lack of pigment is one of the most portrayed problems with the eyes (“Red Eyes”). Pigment in the Cornea of a normal eye protects the eye from stray light, so the lack of pigment in the eye of someone with Albinism allows the stray light to penetrate the eye, causing Photophobia. Photophobia is a painful over-sensitivity to light. Even the slightest amount of direct light or glare can impair our vision.
(see “Demons with Red Eyes and Mystical Powers?” No sir, No Ma’am for more specific information on Photophobia).
A few more quite noticeable issues with our eyes include Nystagmus and Strabismus. I know you guys just love scientific names!
Nystagmus is simply unwanted rapid eye movement, either side to side or up and down. This, understandably, looks quite unnerving to most people. After all, eye contact is very important to the normally sighted world. For people who have Nystagmus, this has more than just an odd aesthetic effect. This rapid movement can make concentrating on one object or text tough and cause eye stress and over time, eye soreness and pain. It can be quite a hassle for today’s students and anyone working in situations involving reading for long periods of time. Simply taking breaks every half hour or so can be both a necessity and a sight-saver.
Strabismus is a muscle imbalance of the eye that encompasses a few specific conditions: Crossed eyes (esotropia), eyes that point outward (exotropia), and eyes that point upward (hypertropia). These can also look odd to onlookers, but they can have quite a few adverse effects to the person presenting with these conditions. Strabismus can cause double vision, poor depth perception, poor eye contact, “shifty eyes,” unusual head movements (compensating), and a few other issues. Thankfully, many of the problems with Strabismus can be lessened or corrected with surgery. I personally had three of these surgeries at a young age.
In many cases, Strabismus can lead to something called “lazy eye” or Amblyopia. In simple terms, this occurs when one eye is sending the brain unclear images. The brain then decides that that eye is not working correctly, so it “turns that eye off.” Amblyopia usually leads to permanent visual impairment. After Amblyopia occurs, the brain will continue to receive unclear images from the affected eye (or eyes in rare cases). This too can be treated if caught early enough, but it cannot be fully corrected. I was also treated for this with an eye patch on my better eye. Patches (or drops) are used on the better eye to encourage the use of the worse eye and to train the brain to correct the vision in that eye.
And to wrap this listing up (for our purposes today at least), people with Albinism are also affected by the same refractive errors or focus problems that many people without Albinism are affected by. These of course include nearsightedness (myopia), farsightedness (hyperopia), and/or astigmatism. Most of us are very familiar with the various refractive errors and how they affect a person and how they are corrected (glasses, contacts, LASIK, etc). I am nearsighted and I have a slight astigmatism.
Now that you understand a little more about the majority of the eye conditions involved with Albinism, you may begin to understand what it is like to see through our eyes. NOAH has a very nice metaphor involving photos, but I would like to share another metaphor of my own. Imagine you’re sitting at the top of a large stadium. Then, imagine everyone around you has binoculars, and you do not. Everything to you will look undefined, a little out of focus, and you may have trouble making out the fine details of what you’re looking at. What I see is not “blurry” per se; it lacks detail. It is as if I cannot focus on distant objects the way that normally sighted individuals’ eyes can. My Zoom feature is turned off or broken.
Perhaps this will give you some idea, but if you’re still feeling quite out of the loop, please check out this description posted by NOAH here.
What CAN’T I See
Are you still wondering what I can see? What if I tell you what I CAN’T see? If you’re standing more than a meter away from me, I would not be able to figure out who you are based on your face alone. If a sign is above my head, I cannot read it. If font is smaller than 12 point on a paper, I have to have excellent lighting and squint to see it even after my face is centimeters from the page. I have trouble distinguishing between darker colors like navy blue, black, brown, charcoal, gray, etc. At the moment I use my mother’s 23 inch monitor with ZoomText enlarging my screen 4 times. I can sit a normal distance from the screen with my glasses on and read most 12 point text. The downside to using this feature in public is that everyone within a twenty foot radius can also read my screen. (Luckily they do have privacy filters for computer monitors for just that reason.)
I know that we all do not have the same vision, but I hope that my insight can help you to better understand what we individuals with Albinism, as a whole, see. I also hope you have learned a few new things in reading this article. Let me know if you have any questions or comments or if I have incorrectly stated something. As always, thank you for reading.
If you’re interested in learning more about any of these conditions or you would like to know where I found my information, please check our Helpful Sites page. New links will be added as we discover them.
Stay Curious
Danielle Moulds
Albinism Up Close 