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Winter 99 Table of Contents
Versión Español de este artículo (Spanish Version)

By Jan Knuth, MSW, ACSW, LSW, first NOAH President
Reprinted with permission from The National Organization for Albinism and Hypopigmentation (NOAH)

Who's Who in NOAH, a collection of the personal stories of people with albinism, is filled with the recollections of preteens and teens who share their experiences and reactions to teasing. Many parents said that teasing, insensitivity, and ignorance about albinism were their greatest challenges.

The young people reported being called names like "Whitey," "Snow White," "Casper," "Four Eyes," "Blind Eyes," "Grandma," and "Grandpa." They were asked why their heads shake, did they pour bleach all over themselves, and other embarrassing questions. They also reported being excluded from games because they weren't "good enough."

I, too, experienced many of these same things. I was asked once if I could see in the dark. Another time a complete stranger walked up behind me and demanded that I look at her. I think she wanted to look at my eyes.

Understanding this behavior is one of the first steps in learning to deal with these experiences yourself or to help your child with albinism cope. What makes children (and others) tease and engage in name-calling? What causes the crude remarks, the callous behavior and the insensitive questions?

One reason may be fear. Ancient people believed that to name something was to control it. We know today that people can be controlled by repetitious name-calling when they begin to believe the name, and act accordingly.

Other reasons for name-calling, teasing and insensitivity are lack of knowledge, curiosity, a genuine desire to learn, and an inability to express questions constructively.

Some people tease in order to get to know another person better or to express affection. This kind of teasing usually isn't hurtful. However, if the person being teased doesn't have a positive self-image, and isn't comfortable with albinism, even affectionate teasing can hurt.

My first suggestion then, is to develop a positive self-image and a positive attitude towards albinism. Add to that a thorough knowledge of albinism itself and you'll find yourself becoming more comfortable when discussing it with others. The standard `dumb" questions can become opportunities for education if one has self-confidence.

Parents can help their children deal with the hurtful comments by encouraging them to share their experiences and their feelings about them. Parents can also help their children by exploring new and positive ways to respond to the teasing and name-calling in the future and by practicing through role-playing.

Sometimes presenting information in class about albinism can reduce the amount of teasing and name calling. This can be done by the parents or the student, depending on the circumstances. Parents may need to educate the teachers first.

Schools should teach kids that hurtful behavior towards people with any sort of difference is a form of discrimination. A series of lessons on disabilities can provide information about albinism in the context of a variety of disabilities and other differences. This may be done on children's level through puppet shows such as Kids on the Block, videos, and other materials.

Others in NOAH have additional ways of dealing with teasing and name calling, such as using humor. At NOAH gatherings, children or adults with albinism can share their ways of coping in a safe haven.

Editor's note: Several years ago, I was introduced to NOAH at a Low Vision Conference. I was impressed with the information and support available for family members and individuals with albinism. NOAH now has a website <> which includes such features as The WebBoards where NOAH members can exchange questions, comments and concerns related to being a person with albinism. Included on the WebBoards are such topic areas as "Adults with Albinism," "Teens with Albinism," "Parents of People with Albinism," "Hermansky Pudlak Syndrome," "People of Color with Albinism," "Low Vision Driving," and "Careers." Contact NOAH at: The National Organization on Albinism and Hypopigmentation, Snail mail: 1530 Locust Street, #29, Philadelphia, PA 19102 , Email: , Phone: (800) 473-2310 or Fax: (215) 545-2322.

This site also offers a series of excellent publications such as the ones you just read in this edition of SEE/HEAR. Also included on this site is information about:

  • The organization in general, including how to become a member of NOAH;
  • A videotape on albinism;
  • Special events such as Adult Day tentatively scheduled for 1999 in the Dallas/Fort Worth area, & the NOAH Conference in Boston, Massachusetts in 2000;
  • Special projects such as the Experience Book Project and Albinism Awareness Project;
  • The Albinism World Alliance (AWA), a network of albinism support groups in various countries.