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

Social and Emotional Aspects of Albinism

By June Waugh, MS, Licensed Marriage, Family and Child Counselor
Reprinted with permission from The National Organization for Albinism and Hypopigmentation (NOAH)

This bulletin explores how social attitudes influence the personal experience of albinism. These influences will vary from person to person and at different stages of life. In addition, the emotions associated with albinism will be explored. It is in the balance and interplay between the external world and each individual's internal response that a sense of self is born and sustained. Albinism is an important part of that sense of self.

The First Influence: A Disability or Not?

Neither the general public nor those with the condition agree about whether to identify albinism as a disability. This ambiguity creates a problem in the language used to talk about albinism.

It also makes it difficult for those with albinism to identify themselves as a group. For many reasons albinism can be seen as a very unique condition. Its uniqueness, however, has led to separateness and isolation for many people. Social attitudes toward albinism are often similar to those experienced by other disability and minority groups. These attitudes include a lack of understanding, fear of the unknown, and prejudice based on appearance.

The Americans with Disabilities Act defines disability with respect to an individual as "a physical or mental impairment that substantially limits one or more of the major life activities of such individual; a record of such an impairment; or being regarded as having such an impairment." Albinism involves a visual impairment and in this light can be called a visual disability. A handicap can be defined as "the obstacles a person encounters in the pursuit of goals in real life, no matter what their source." Thus a person with a disability may or may not be handicapped in pursuing the life they want to live.

The identification of albinism as a disability is complicated by the concept of legal blindness. Legal blindness is defined by a visual acuity of 20/200 or higher in the better eye with correction. By this standard some with albinism fit the legal category of visual impairment and some do not. Yet, in spite of varying visual acuity, many of the problems experienced by those with albinism remain similar.

The Second Influence: Physical Appearance

What draws more attention to albinism, at least initially, is the unusual appearance of a person. The white hair and skin of oculocutaneous albinism is a powerful factor from the moment of birth.

The new baby will often be much lighter in color than any family member. In nonwhite races the coloring of the baby with albinism is a dramatic contrast to the family and community. Color is a highly charged characteristic in our culture now and historically. Strangers will often make unwanted and unkind comments about the appearance of a child.

Beyond color, a child's eyes may be moving rapidly and not focusing together. The child may have to squint, tilt his or her head, and hold things close in order to see. Contact lenses, glasses, and optical aids are used to enhance vision. Thus the child with albinism often feels isolated not only in physical appearance but also in the conduct of everyday life.

This perception of being different can lead to an immense effort to act as much like "normal" as possible. Pressure comes from within and without to minimize the differences caused by albinism. This effort can result in a great deal of stress for a person continually trying to maximize visual ability. It can result in denying altogether that one has albinism and losing touch with a very important part of one's self.

In the early years and throughout life, family and close friends can counter this isolation and denial. Being prized and valued as a whole person is the foundation for a lifetime of self-esteem and inner strength. This prizing must include an honest acknowledgment and acceptance of the condition of albinism. It is vitally important that families can freely discuss the impact of albinism in each of their lives.

The Third Influence: Language, Myth, Stereotype

Language can shape ideas and create reality. The word "albino" is commonly used in many languages including English. Some people are comfortable with the word and prefer being called an albino. However, the word "albino" is sometimes used hurtfully. Many feel it is dehumanizing to refer to a person in terms of a condition. Although slightly cumbersome, the terms "person with albinism" and "people with albinism" put the person first and the condition second.

Teasing and name-calling are other ways in which language can be very dehumanizing. Almost all children will encounter this during the school years, and they need to develop positive coping strategies. Parents, teachers and increased education about albinism can help with this problem. (See also "Coping with Teasing and Name-Calling" section at the end of this bulletin.)

Albinism carries with it myths in cultures throughout the world. These run the spectrum from the notion that those with albinism have magical powers to the belief that they are retarded. Among African-Americans, a common myth is that babies with albinism result from a union between an African-American woman and a Caucasian man. Another common myth is that people with albinism must have red eyes. People with albinism usually have blue or gray eyes which sometimes appear reddish in certain types of light. Those with albinism have inherited a legacy of irrational notions about themselves.

The media, including literature and film, have contributed to stereotypes of albinism. The character with albinism is often portrayed as villainous, deviant, supernatural or sadistic. Also some news reports and encyclopedia articles have included false or incomplete information about albinism. It is difficult for the public to know what is true and untrue about albinism.

The Fourth Influence: The Family

It is vital that the family members have accurate information about albinism. New parents need support and time to understand the condition of their child. Parents and family members may need to face some unpleasant stereotypes they have learned about albinism. Siblings need to understand why their brother or sister looks different and why they seem to be getting so much attention. There is no single force greater than the family in helping a child understand and accept his or her self.

The Emotional Component of Albinism

Along with the external influences of society every person has a vital and essential emotional response to their personal experiences with albinism. These personal responses shape who we are and how we adapt to albinism. A strong emotional response is a normal part of living, growing, and intellectual development. Suppressed emotions often turn inward and cause stress, depression and physical maladies.

Emotional response to albinism will occur throughout life because of the many challenges and frustrations the condition presents and the many societal influences already mentioned. It is very important to develop healthy ways to express and integrate these emotions. First, it is necessary to recognize feelings and determine their source. Parents can help children with this by labeling the feeling the child is experiencing and then connecting the feeling to an event or reason. For example, a parent might say, "I know you are sad right now because you cannot swim with everyone else." Then the parent can help the child "do" something with the emotion such as to talk about it, play, yell, run, cry - whatever physical outlet will release the feeling. This validation and release are essential in processing an emotion. Adults can do this by having friends and family who will listen to their experiences of frustration, anger, discouragement, or pride. Some ways to release an emotional charge are physical activity, taking action in the form of education or advocacy, journal and letter writing, or doing something nurturing for yourself. Sometimes professional help from a therapist or counselor can assist a person in working through the highly charged issues of albinism. It is not easy coping with albinism, yet it can be very satisfying and can offer a connection, a link, to the human condition.

Conclusions

A very basic human need is to be "seen" by another person---to be known and to be accepted. This is poignantly true for the person with albinism who may be immediately "noticed" by many, but truly "seen" by few. This explains why it feels like a hidden condition despite its obviousness.

NOAH provides an opportunity for people with albinism to get together and share their experiences. Being involved with others is a way to decrease isolation and share in the combined knowledge and experience of the group. It is a way to gain confidence and strength in meeting the challenges of this condition.

Albinism, often unexpected in a family, can be a catalyst for acceptance, understanding, and love that encompasses all family members and each of their individual differences. It is a physical manifestation of uniqueness, with joys and hardships all of its own. Through the efforts of dedicated families and individuals albinism is becoming known and understood.


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Last Revision: May 14, 2004