“Stop squinting. It will damage your vision.” I heard this command countless times growing up. My mother was fond of telling me all the ways I would damage my already impaired vision. Sitting too close to the television, holding the book so closely that my nose often bore smudges of ink and the squinting of my eyes were at the top of her list of forbidden actions. I was simply satisfying my need to see everything possible.
Many people at some point squint in order to see better. For a person with albinism squinting is a reflex to minimize an excess of incoming light. Light enters the eye through the pupil while the iris, or the colored part of the eye, screens out excess light. When a person has little to no pigment in the iris, the light enters the eye unrestricted. This causes an extreme sensitivity to light, which is known as photophobia.
In addition to having acute photophobia I am also legally blind. My vision is 20/200 which means for what someone with 20/20 vision can see, I need to be within 20 feet or closer to do so.
My mother was brutally honest with me. I was required to do the same chores my siblings did even though I had to get creative to accomplish them. I am thankful for these valuable and necessary life lessons because I am extremely independent.
I thought it would be valuable to share a video which provides insight as to how many people with albinism actually see as we navigate in our daily lives. Understand this is an example and just as we are all unique individuals, those of us with albinism have varying levels of visual impairment.