He has white hair

High school can be a real tough time for someone who doesn’t quite fit in with the crowd. I just wasn’t into bush parties and drugs, so that put me on the nerd list right there. Add to that the albinism factor, an array of odd looking glasses, and things can seem hopeless. Some kids at that age think it’s funny and cool to tease and torture someone who is different. They feel uncomfortable because they have hit upon something that they don’t have a handle on. They don’t understand it, and that bothers them. They become a victim of ignorance. So, they put themselves back in control of the situation by teasing and mocking, thus making you the victim again. They feel better, and move on, with the feeling of control back where they think it should be. Interestingly enough, this never happens when they are alone under these circumstances. But when among peers, it’s survival of the fittest, a fight to be the coolest, and the bravest. There’s not much you can do initially; it’s going to happen. But strength is your best friend. My strength came from believing in myself, knowing that I could do things that they couldn’t. I had the tremendous experience of performing in a school talent contest. There were bands and singers and, did I mention bands? Well, I got up there in front of a full house with my brother’s acoustic guitar, and sang my heart out. A song called, "Love Is Beautiful" echoed into the staring audience.

I couldn’t see them, but I felt the eyes of hundreds of students watching me do something they had never seen me do. At the end there was silence, then a burst of applause that was deafening, and a standing ovation. Although I was greatful for their appreciation, I couldn’t help but feel that in some way, I proved a point. To top it off, I won first place! I must add that my parents, brother and sister were right there in the front row, and that meant everything to me.

The remainder of high school was a little easier. Some things just went back to "normal", but it wasn’t as bad. I was nicknamed "Johnny Winter", who is a rock star and his brother, Edger, is also a performer. Both of them have albinism. From then on, people just called me "Johnny", and some thought that was my real name. I was kind of proud for a while but it eventually got on my nerves. I wasn’t anyone else but me, Craig, the same person I had always been.

You might notice that I haven’t used the word "Albino" in this story. That’s because it is unacceptable for me to be referred to in terms of my condition. I am not an albino, I am a person with Albinism. This quote from the NOAH web site (The National Organization for Albinism and Hypopigmentation) explains it perfectly.

"Language may shape ideas and create reality. The word "albino" is entrenched in the English language. The reality it creates is often not favorable. It is dehumanizing to refer to a person in terms of a condition. To call someone an "albino" reduces the vast complexity and potential of that person's human nature to a biological anomaly. It is important to refer to "person with albinism" rather than "albino." Although cumbersome, "person with albinism" puts the "person" first and the condition second."

Furthermore, the last thing we need to do is give people a one-word label that is easy to yell out of a passing car window. It is not likely that they will yell out, "Hey, person with Albinism!".

There are a lot of people that have albinism who have accepted this nickname. They should read the above quote carefully, then demand some dignity from society.

Within the last 10 years, I've gone through a lot of changes and learned how to except who I am. Once I made it out of high school and into college, the awkwardness faded, my collection of glasses were no longer "spectacles", and manhood brought confidence. Girls started to show more interest in me and I started dating more. At age 24, I got married. Things didn't really work out with that but I got two wonderful children out of it all; Steven and Brooke. I still wrote music, and it helped me immensely through difficult times during the divorce.

Now, I have re-married and live in a townhouse with my new wife and best friend, Winona (left). We live in a area where everything is close by and easily accessible. This is perfect, since I obviously don’t drive and Winona does not have her license either. Together, we have a charming little boy named David. (Link at bottom of page)

I love to cook. Since I’ve become the chef in the house, I do the grocery shopping on my own. It’s surprising how helpful people can be. There are numerous times when I am squinting at a label, or down on the floor trying to check the prices on the bottom shelf and some kind person offers to help. Although I prefer to do things on my own, I’m not afraid to ask a fellow shopper for assistance. I simply explain that I can’t see it and they are more than happy to help. When I’m out by myself I usually carry a white cane, folded up in my pocket. It is indispensable when walking through busy parking lots or crossing where there is no traffic light. If I’m in doubt, out comes the white stick that basically says, "If you hit me, it’s your fault because I am blind." That’s not a joke. I was once told that I could be at fault if I don’t worn drivers that I might not see them. When I’m out of danger, I fold it up and put it away. I often wonder what people think when they see that.

Other things I enjoy are repairing VCRs and computers, and I’m very much into videography. People shutter when they find out that the guy who is videotaping their wedding is legally blind. I must be doing something right because word of mouth has kept me in demand for 12 years.

My music has matured and I have written many songs about my experiences growing up; everything from heart throbbing love songs to down home rock and roll. A small studio that I have put together allows me to record demos of my songs, some of which are featured on this website. Finally, I have acquired the equipment to master my own CD.

You know, I can't exactly say that I've turned out to be a genius after all. I do, however, have a number of special and unique talents which I am very proud of. Perhaps these gifts have been earned and possibly deserved. I feel very strongly that if it weren't for me having Albinism, I would never have achieved so many things. I have come a long way from that beach ball, and I am indebted to my parents first and foremost, who led me down the right path, and never once restricted my choices regardless of my limitations. The birthday card they gave me on my (31st) birthday says it better than I ever could. It reads:

You’re a special son and have always been an important part of my life. You are appreciated for who you are and what you’ve become. Your birthday is a reminder of the years of happiness you’ve given.

HAPPY BIRTHDAY, SON

To conclude, I would like to say that I was an unplanned child. Once, I asked my mother if I was a mistake. She replied with a smile, "Yes you were … but Craig, you were the best mistake we ever made".

- Page 3 -