Growing Up with Albinism and Legal Blindness

If you’ve found this article you probably already know what albinism is but in case you don’t, here is a quick rundown. Simply stated, albinism is the lack of hair, eye and skin pigment. Lack of pigment in the eyes tends to give them a pink hue as blood vessels in the retina are not masked by the color of the pupil. As an example, a white rat is a rodent with albinism. People can have albinism too and they are born with it. It is hereditary. When two “carriers” of the albinism gene come together there is a chance they will have a child with albinism. They may not know it (as in the case of my parents) until they discover their child is very “fair” and doesn’t see well. The lack of pigment in the eyes leads to a malformation of the macula and fovea (the optic nerve) in the first months of life leaving the child with permanent low vision. This is not a correctable condition since eye glasses and traditional lenses can only correct for a misshaped cornea, the most common form of vision trouble. The low vision condition caused by albinism is involved with how images are transmitted to the brain.

Growing up with albinism is problematic. Firstly, as you might imagine you are picked on by the other kids mercilessly because you look different. A popular nickname on the playground is “whitey.” With the lack of pigment in the pupil, a person with albinism is extremely sensitive to light. In the sun you are prone to severe squinting which adds to the odd appearance. Medical people will want to fit you with all manner of sun glasses that seem to be needed in normally inappropriate circumstances. Again, this leads to taunting and name calling. In the classroom it is difficult to impossible to see the chalk board without the aid of a visual device. I remember as a kid other boys stealing mine and playing “keep away.” To read you need either a strong magnifier or large print editions of the text books. Neither of these options are optimal. The large print books come in multiple volumes and are giant sized again pointing out that you are different. Using a magnifier just looks strange to other kids too. I chose the latter so I didn’t have to tug around those huge books.

At one point it was suggested that I go to a “school for the blind” but my father taught me to forge on and be persistent so I refused. I thought “if you put me in a school for the blind then I will start to act link I am blind.” In my young mind I could see well enough to walk around so I was not blind. The way I saw the world was all I knew so it was normal to me.

Things got tough in gym class. Kids will find the weakest one in the crowd and hone in. During Dodge Ball I was a popular target. When two teams were being decided, the appointed captains would always pick me last trying to avoid me mathematically as the choosing went on. I took it all in stride until high school when I had a gym teacher that simply thought I was faking it. It was an awful experience so I convinced the school to let me out of gym class for the rest of my high school career. They were reluctant but since I had a doctor’s recommendation, they let me out. My school experience improved from then on because I wasn’t constantly displaying my lack of athletic ability. About this time I learned to laugh at myself. I found that if you went along with all the kidding and name calling laughing it off, people started to like me more. I think this is because they don’t have to feel so uncomfortable around you. They know you can “take it.” By my senior year I was actually liked by most of the kids and fit in quite well.

Being legally blind, I cannot drive. So as other kids started getting their licenses, I was left out. Not driving has been the biggest hardship of them all. We are an automotive society and people who can’t drive are a burden on others. It is not easy to constantly ask for a ride. People just don’t like to be inconvenienced. I made it through somehow and started working at the age of 16 in a supermarket. I had gone around to dozens of local businesses trying to find a job. In those days it was OK for an application to ask if you had any physical disabilities. I was always honest and would put down “legally blind.” Well as you can imagine, I was not a popular applicant. But, finally a supermarket manager decided to give me a try. I did very well at the store for some months until I contracted pneumonia from gathering shopping carts in the snow. Since I was out for a week, they replaced me and cut my hours to almost nothing so I moved on.

Since I didn’t see well I was always interested in anything audible. My hearing was excellent. So radio became my hobby and eventually my career. I’ve found that many folks with albinism are in fields such as radio or music.

There is a web site where people with albinism join together and discuss their malady. It’s www.albinism.org. It is run by NOAH which stands for the National Organization for Albinism and Hypopigmentaton. It’s a great resource for the afflicted and the parents of kids with albinism but I must caution youâÂ?¦ I find that many who frequent their message boards feel sorry for themselves and much worse for their kids who have albinism. My advice if you are parent of a child with albinism is that you not coddle him or her too much. Try not to label the kid. Let him or her find their own limitations within reason. Use large easy to see and colorful toys and let them be kids. They’ll find their way. Remember that the way they see is the only way they know the world. They won’t know anything different until someone tells them. As they go through school it will get tough but it will help if you teach them to laugh off any ridicule. Kids will only persist in taunting when they get results. If you laugh along with them, they will soon stop. At the very least teach your child to ignore it. If a kid reacts he will continue to receive the abusive behavior.