Responses from the global albinism community

In January 2009, I solicited responses to the word “albino” from the vast albinism community on Facebook and posted a story, “Is the Word Albino Derogatory?” on Suite101.com.

I’d expressed my thoughts on the subject in an essay entitled “The Original Off-Color Insult” that I posted to by Suite101 blog last November.  I thought the topic warranted a wider discussion.

Here’s an excerpt from my essay.

“I’m reasonably confident and accomplished and have spent years confronting albinism through writing. Yet when I hear the word “albino,” I’m jolted: I feel anxious, exposed, and angry, realizing how this word, most often used derisively, remains impervious to political correctness at a time when broadcasting one ill-chosen word, regardless of intent, can end a career.

It amazes me how once-common words that fuse condition or ethnicity with one’s humanity (e.g. Jap, Mongoloid, Negro) are embarrassing memories in our age of hair-trigger humanism, while “albino,” coined in the 17th century by a slave-trolling Portuguese explorer, warrants a spell-check entry in the AP Stylebook, while it’s ultimate value, to my ear, is to make its users feel pithy, precise, or powerful.”

That’s my emotional response, though even at my most rational, I think the word is crippling to albinism’s image because of its high potential for abuse.  It’s a putdown, a one-word punchline for comedians, TV writers, and bullies. Kierkegaard said, “When you label me, you diminish me.”  Many who hear the word “albino” understand this on a deep level.

There are other ways of looking at the word, however, and I was grateful and proud of the number of thoughtful and well-reasoned responses I received.  I was also disappointed that Suite101 caps stories at 600 words.  So here’s some expanded coverage of the debate from around the world.

The discussion need not stop here.  You can express your thoughts on the topic in a number of ways, from writing to Albinism Insight, and leaving comments on the aforementioned Suite101.com posts.

Is the Word “Albino” Derogatory?

“The word “albino” was hurled across playgrounds and whispered out of earshot of teachers and parents with such malice when I was a child that it will always have a 10/10 cringe factor for me. However, I’m determined to use the use in a positive way. I’m not comfortable saying it, but I do use it on Facebook and in online albinism groups as a way of becoming friends with it.”

Annette Ferguson, Dubbo, Austrailia

“I have been criticized for saying “persons with albinism,” but I don’t care; I don’t like the word because it’s been used against me out of anger and fear. I chase away and diminish its power by correcting its misuse and removing it from my vocabulary.”

Rae Lowery, Atlanta

“It is a fact: my daughter, Lyra is “an albino,” but we never use the word in reference to her.  It isn’t really the word that’s negative, but society’s perceptions.  Most of what people think of when they hear the word “albino” is negative.  This is why I called my video “Perception is Not Reality.”

Mashawna Thompson, Kansas City

“I do correct people who call my son “albino.”   I am nice about it because I know it is done out of ignorance.  I tell them “albino” is an archaic term and we do not use it. What I really hate about the word “albino” is that it is used like it is a race of people.   My son happens to have a medical condition, and I do not allow people to define him by it.”

Chantel Alberhasky, Springfield, Missouri

“Albino” is the term people know and associate with albinism.  When they say “albino,” I’m not offended, and I hope (my son) Brody isn’t, because it gives an opportunity to educate.”

Vicki Godwin Helms, Charlotte, North Carolina

“I dislike the word “albino.” It’s a degrading and very hurtful word.  Whenever I hear it, I get a sense of sadness and disgust. I have dealt with the stigma of white hair and light skin, but I still have not been able to accept that word.”

Christie Carlstrom, New York City

For many, the word “albino” can spark humor or horror.  “When my daughter Stephanie was 12, she called from camp and said, “What’s an albino? Is that like being Italian?” recalls Teri Ackermann-Ferrigno of Richmond, Virginia.  After laughing, Teri explained the term.  But on a trip to Busch Gardens, whose Halloween decorations included a mock freak show tent, a sign read, “Come See the Albino!”
“Needless to say we made them take it down.  It took hours, but we made sure it was down.”
The word has never defined Stephanie.  “Ever since that camp phone call, she corrects people. If someone asks, “Are you albino?” she says, “No, I am Stephanie and I have a condition called albinism.”

Teri Ackermann-Ferrigno, Richmond, Virginia

“I only use the term when people ask about my son, Gabriel’s eyes or his sunglasses and usually just with family friends.  Casual strangers get a smile.  When I tell people he has albinism, they look at me like I’ve said he has a 3rd leg.”

Kendra Peters, Kettering, Ohio

“I once tutored a child with autism and at first, I thought the politically correct change from “Autistic” was oversensitivity. Having a daughter with albinism made me understand the difference. She is my child; albinism does not define her. However, I empathize with people who do not grasp this nuance, as I once did not either. I consider use of “albino” to be a minor faux pas.”

Dan Leavitt, Virginia

“I think it’s hard to erase the word from common use; fighting against the flux is not the way I’ve learned to live.  For me, “albino” is offensive because we with albinism take it that way; most of us get angry and disappointed as soon as we hear it.  Our goal should not be to forbid the word, but to make it friendly and to teach to not use it so aggressively.”

Danilo Andrés Riaño Rodríguez, Bogotá, Colombia

“The term “albino” has never bothered me per se. To me, it’s an obvious statement: I am an albino; but I am a wife, mother, New Englander, and a Country Music fan, too.  Out of respect for others in the albinism community, I try to enlighten people that use of the word could offend some people, but I haven’t heard the word used rudely in a long time.”

Lee Ryan Laughlin, Loudon, New Hampshire

“I don’t get upset when people call our children “albinos” because they usually know nothing about the condition.  I gently say to them, “They are people with albinism.” However, within our own home, we try to be more playful about the term and hope to teach our children that they can reject the term if they want, or make it their own.”

Cassandra Hartley, Ann Arbor, Michigan

“I introduce myself to my class as albino.  Yes: I use the “A” word! The reaction is one of intense interest; my students want to know more.  I wish the “A” word had been used with me decades ago.  I only found out that I was albino seven years ago.  I had no idea why my eyesight was crap.  Eye doctors all knew what I had but were too embarrassed to say.  Their reticence did me no favors.  That’s why I tell everyone I am Albino – and very proud of it.”

Dr. Brian Evans, Altrincham, United Kingdom

“I do not feel offended at all.  I take the time to educate and inform people about our condition. I strongly believe that we who are affected by it are responsible for spreading accurate information.”

Graciela Jimenez Reyes, Miami

“Words have the power we attach to them. When someone calls me “albino” doesn’t my response assign negative or positive power to that word?  I prefer person-first language, but not everyone is that in tune. I’m more concerned with why someone considers calling me an albino insulting. What’s wrong with having albinism?  It’s not the word we should be battling – it’s the image.”

Heather Kirkwood, Kansas City

“Every time I hear the word I absolutely cringe and my inside self returns to all the taunts of childhood.  I can be 100 feet away, and if it is said, it is just as bad as having someone stare at you and say it!  Albinism’s image is slowly improving, but recently, a doctor said to me, “You do not look like an-albino: you are beautiful.” I have a daughter in medical school, so at least we are adding one understanding doctor.”

Barbara Fischlowitz-Leong, Honolulu

“I am not personally opposed to the word “ albino.” Many more people seem to understand that word than “person with albinism.” I want my daughter to use whatever term(s) she’s comfortable with, and if she wants to use “albino,” that is her choice.”

Lauren Wibbe; daughter Joli, age seven.

“My girlfriend convinced me to join NOAH. Over the last few years I have come out of a long denial, an albinism coma. I grudgingly put up with the word “albino” but prefer Garth (a person with albinism).

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