Tuesday - June 13, 2023

WORDS OF HOPE

In a country where white supremacy rears its ugly head way too often, it is actually

possible to be too white. People with albinism, a rare inherited genetic condition that

reduces the amount of melanin formed in the skin, hair, and eyes, face the same kinds

of stereotyping and marginalization as do so many others who do not fit the narrow-

minded definition of “normal” held by some.

On November 18, 2014, the United Nations’ General Assembly adopted a resolution

establishing June 13th as International Albinism Awareness Day. This historic resolution

confirms the global focus on albinism advocacy. Albinism occurs in all racial and ethnic

groups throughout the world. In the U.S., approximately one in 18,000 to 20,000 people

has some type of albinism. In other parts of the world, especially in Africa, the

occurrence can be as high as one in 3,000. This UN resolution is significant and

necessary because much of the way people with albinism are seen and treated is the

result of misinformation and myth.

In places such as Malawi and Tanzania, people with albinism are hunted and killed

because there is a belief their body parts have magical powers. Also, the graves of

people with albinism are dug up and the corpses dissected so that the witch doctors

can use the various body parts in concoctions, potions, and rituals, with the promise of

bringing prosperity to their users. On the other side of this, particularly in sub-Saharan

Africa, is that people with albinism are murdered because they are believed to be

cursed and will bring bad luck to those around them.

Though living with albinism in the United States is not mired with the same dire

circumstances found in some African nations, myth and misinformation, mostly put forth

by the entertainment industry, do run rampant and thus present challenges to those of

us living with albinism. For most people in this U.S., their only perception of a person

with albinism is “the evil albino” as developed in Hollywood movies such as The DaVinci

Code, The Matrix Reloaded, The Princess Bride, and, sadly, many others. In these

movies, the albino characters have grotesque health conditions, which in reality are not

associated with albinism at all; they are expert assassins, which is hilarious because

most people with albinism are legally blind; or, the plot lines purport that the condition is

the result of incest, which is absolutely not the cause of albinism. Thus, the average

person with albinism trying to make their way through life has to work to break down all

of these myths and stereotypes almost on a daily basis.

The number one myth surrounding albinism is that albinos have red or pink eyes. This

is totally false! Most of us have blue eyes, with some people’s leaning toward lavender.

This piece of misinformation, however, helps to promulgate the character of the “evil

albino” because red eyes suggest something way more intriguing and otherworldly than

does a fair-skinned person with blue eyes. The albino eye is also characterized by

nystagmus, uncontrollable rapid eye movement, and poor vision that cannot be

improved with corrective lenses, traits that are overlooked in these Hollywood

depictions.

I share all of this information partially as a public service announcement on International

Albinism Awareness Day, but also because of its broader meaning. That is, in a world

where our perceptions can be so easily manipulated by a Hollywood take on life and

where virtual and augmented realities are becoming the norm, we must always

remember that we are all real people, real children of God, living real lives. We each

walk a unique path and no one else knows what it is like to walk in our shoes every

single day. 

As we say in academia, if you seek truth and want to understand more fully,

go to a primary source. Don’t assume what the life of a person with albinism looks like

based on a movie…or for that matter, the life of a single mother, or an addict, or a felon,

or a trans person, or a white supremacist. The only way that we can come to

understand, empathize with, and grow in love as a world is to share our firsthand stories

with one another openly and honestly and resist our instinct to judge or, worse yet, to let

others judge for us.

PRAYER

Loving God, Creator of us all, help me to be comfortable in my own skin and to

understand the power and wisdom of my vulnerability. Amen

DEVOTION AUTHOR



Kris Baker

Order of St. Francis and St. Clare

Board of Directors, National Organization for Albinism and Hypopigmentation