Comments on: Albinism worldwide

By: alvin isaiah okon

alvin isaiah okon — Wed, 30 Sep 2009 15:32:04 +0000

i am very pleased about this albinism/albion thing:my fiancee is albino and i love her very much bcos she is very humble and understanding.i would love to know how to live with her as a wife and look after her to the best of my ability.
hope to hear from you soonest.
cheeers!

By: LEX

LEX — Sun, 16 Aug 2009 23:00:47 +0000

Yes, the term people with albinism was used a few times in the program, but use of the singular, noun form was used far more.

The fact that no one knew what you were talking about when the term albinism was used in your meetings further illustrates my point.

Teachable moments, such as this program, can be utilized to further educate, demystify and familiarize the general public about a genetic condition which is most often misunderstood and demonized in popular culture.

The “N” word analogy was used to illustrate the affect of negative generalizing and characterizing a group of people born with albinism feels when the singular term is used.

I’m glad the time was taken to produce this program.

By: Mona Berge

Mona Berge — Sun, 09 Aug 2009 09:42:29 +0000

Hi! I have started a project to help people with albinism in Uganda, you can read about it on the following link http://www.albinismaid.com
Check it out, and let me know what you think! If we stand united in helping these people we CAN make a difference! Thanks, Mona :)

By: CLC

CLC — Mon, 03 Aug 2009 23:55:49 +0000

Rick is one another is one of the warmest individuals you could hope to meet. We have a wonderful photo he took of our a boy at 6-months-old. He does not have albinism but another genetic anomaly that can create visibly noticeable changes. It’s great to see his work highlighted as the purpose is to make us all look at the similarities and not fear the differences.

By: Carol Southern

Carol Southern — Thu, 30 Jul 2009 20:47:55 +0000

When I was in grade school I was “crippled,” in high school “handicapped,” in college “disabled,” then I was a “person with a disablility,” “differently-abled,” “non-able-bodied,” and some other far fetched euphamisms I don’t even remember any more. The only one *I* really find offenseve is the “C-word” (because it takes me back to my childhood when I was teased). I stress “I” because others with my exact same condition have the opposite opinion. You really don’t know what an individual’s preference is unless you ask. By the way, you can call me an “amputee,” or a “person with limb loss,” but just don’t call me “amp-gal.” :-)

By: Samantha M

Samantha M — Thu, 30 Jul 2009 18:06:33 +0000

Thank you for hopefully expanding peoples thoughts of us “albinos”. I hope that people can see that all skin colors are beautiful, even the ones who don’t have much color at all.

By: Phillip Martin

Phillip Martin — Wed, 29 Jul 2009 17:37:03 +0000

On the main point Lex is not wrong. Many people with albinism (but by far not all) do not use the term “albino” to refer to themselves. However, I have seen no where where the term has the equivalent meaning as the N word for black people. Rather, I found that for many people with albinism who do use the term for themselves (in South Africa and Brazil, for example, where many pronounce the word as “al-BEE-no”) it is more akin to someone here in the U.S. using the descriptive “black” rather than “African-American”, which connotes provenance, culture and history, a more holistic description. Still, it is clear why Lex and others would take offense to the term “albino”. It represented an editorial conundrum for me and the editor in the context of explanatory radio news. When we spoke with so called non-albinos about this story and used the phrase “people with albinism” almost no one knew what we were talking about. It became clear to them only when we used the term “albino”. What I should have done after speaking with Peter Ash and Rick Guidotti was to write “so-called albinos–a term many consider pejorative–prefer the terms ‘person or persons with albinism’”. Our main objective was to address the larger dominant issues faced by people with albinism. Communicating the familiar to audiences OR communicating new approaches and terms are generally easier to do in print and on television (with images). But we could have split the difference, and I understand why this term would be upsetting to those with this condition. For the record, we did use the term “people with albinism.”

By: Matthew Rensing

Matthew Rensing — Wed, 29 Jul 2009 00:39:20 +0000

Another issue with an otherwise interesting story. The quotes example of “Powder” as a movie with a villainous albino character is way off-base (a misleading audio clip from the movie was even employed in the program). The albino character here is the protagonist and a victim of bullying throughout. Now I would not call it a great/realistic portrayal either (he does have magic powers for some reason), but to characterize the albino character as a villain is misleading and undercuts the program’s probably valid argument.

By: LEX

LEX — Tue, 28 Jul 2009 23:50:07 +0000

Good story. Nice to see that NPR has taken the time to air the plight of those with albinism in Tanzania.

FYI people with albinism, such as myself, do not like to be characterized by the singular word – albino. This is a condition they were born with, not choice, and does not define one’s character. By continuing to refer to “us” in that singular term oversimplifies and negatively characterizes a person with albinism. You would not call black people the “N” word nor would you refer to a blind or deaf person as such, but refer to them as being born with the condition, so why impersonalize people with albinism?

I’m surprised NPR, and Lisa herself, kept referring to the subject of the story as albinos. Once or twice is fine to identify the common terminology, however, the lack of the use of “people with albinism” show some minor ignorance and socialized dehumanizing attitude. First step is to not characterize someone with albinism with the singular term (albino) which has often been used to harass those of us growing up with this condition. By acknowledging the condition an not labeling an individual as such would go a long way in demystifying the stigma, superstition and prejudice suffered by those in Tanzania, the subject of your story.

Notice that Rick the fashion photographer used the more accurate term?

By: Cassi

Cassi — Tue, 28 Jul 2009 23:34:24 +0000

Steve – the problem is, the man from Princess Bride is just one of MANY MANY negative portrayals of people with albinism. There are NO positive portrayals of people with albinism. And when that’s all people know (since meeting someone with albinism is rare), the result is a slew of insulting and ignorant comments that my two sons with albinism receive every time they go out in public. I’m not saying that race isn’t important, but when people around the world are discriminated against and even murdered in large numbers for their genetic condition, that’s equally important and FAR less covered. Stop focusing on one movie example and please try to see the bigger picture – through someone else’s eyes.

By: Public Radio International Series on Albinism Worldwide Features PE « Positive Exposure’s Weblog

Tue, 28 Jul 2009 23:33:13 +0000

[...] albinism worldwide. For part two, reporter Phillip Martin interviewed Rick Guidotti about albinism. Listen to the recording of part 2, which includes Rick’s beginnings with Positive Exposure, Peter Ash from Under the Same Sun, [...]

By: Salil - San Diego

Salil - San Diego — Tue, 28 Jul 2009 21:23:16 +0000

I have an albino son & I strongly feel that having mainly family support can make huge difference. I know he’ll be teased as he grows up; we noticed that at local baskin robbins where teenagers were making fun of him. There are some things which won’t change like Hollywood’s love for albinos; so I just don’t even expect any kind of support from such entities. We are all lacking something or the other although most people think they are “perfect” purely based on their physical appearance :-)

By: Kathleen Lorden

Kathleen Lorden — Tue, 28 Jul 2009 20:59:39 +0000

Thanks for airing this story! I met and photographed some wonderful Ugandan albino’s last year. Not only are they shunned in their own communities, but they are extremely poor and can’t afford basics such as sunscreen, hats, and sunglasses. If you’re interested in helping, please contact me! Thanks!

By: Steve Merrill

Steve Merrill — Tue, 28 Jul 2009 20:46:02 +0000

Great story. Up untill the other night on the bbc I hadn’t heard about the murder and trade of ograns etc of albinos. And while things SHOULD be done to help those in real physical danger. Are we in America that done with our far larger poblems of racial tension with whites, asians, african americans, native americans, mexicans and central and south american? guess it never hurts to look at any problem. I am just saying is it that big of a problem in the states? Sadly the most umbrage I take is picking on the princess bride. I mean realy? Did you watch this movie, or read the book. It is about a magician who cares more about revenge than true love, a drunk mercinary, a giant who works displasing people, a vapid self centered woman *more in the book* a notorious pirate. and thats the “heros” The albino is a saint compared to them. He is just a working class shmo, hey no offence this is just my job kinda guy. The bad guy is the perfect “normal” prince who is a regacital, homocidal, murdering, warmongering, bad bad man – and who in any other book would be the hero! Sorry gotta call BS on that one. In a story of moral gray the albino is purest of them all.

By: Beth Graham

Beth Graham — Tue, 28 Jul 2009 20:29:38 +0000

The San Antonio Central Library was fortunate enough to have Rick Guidotti’s traveling photo exhibit on show for several weeks. It is an amazing exhibit and the philosophy behind it inspirational.