Albinism



Former fashion photographer Rick Guidotti took this photo of Kathleen De La Rosa Widefoot, a Navajo woman from Pinon, Ariz., who has albinism.

Courtesy photo

 

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Photographer captures albinism in positive light

Elizabeth Hardin-Burrola
Special to the Independent

"Nothing is uglier than ignorance."

- Rick Guidotti

GALLUP — A few years back, New York City fashion photographer Rick Guidotti walked away from his lucrative career and embarked on an uncertain personal journey.

It was a journey that would lead him around the world, meeting and photographing individuals of all races, many of whom had been made to feel "less than" by the world around them. Guidotti is still on that journey, and it is bringing him to the
Navajo Reservation and the Hopi and Zuni Pueblos in the next few weeks.

Guidotti is photographing people with albinism, a genetic condition that causes individuals to have little or no pigment in their eyes, skin or hair and to have visual impairments. The work is part of "Positive Exposure," the project Guidotti launched to raise public awareness and change public perceptions about albinism.

With each person he photographs, Guidotti tries to capture the strength and beauty of his or her spirit. And with each photograph collected, Guidotti shares that vision with others. It's a vision that has changed his life.

"I never saw through my heart," he admitted in a recent phone interview. "And now, with this project, everything I look at is through my heart. It's amazing."

Guidotti is scheduled to arrive in Pinon, Ariz., on Saturday, April 21, where he will work with the assistance of Kathleen De La Rosa Widefoot, a Navajo woman with albinism. The two met last year through the National Organization for Albinism and Hypopigmentation (NOAH) and were featured in two news stories in the Independent (July 29, 2000).

According to NOAH, one American in 17,000 has some type of albinism. Among some Native American tribes, the rates are much higher. It's estimated that one in every 3,000 Navajo people has albinism and one in every 250 Hopi and Zuni people are affected.

Individuals with albinism are encouraged to contact either Guidotti or Widefoot to talk and share information. Having a photography session with Guidotti is optional to those who feel comfortable with that idea.

Widefoot's story

Just last May, Widefoot learned the term "albinism" and read information about the subject on the Internet. Widefoot, a single mother of two daughters without albinism, was excited to finally have some information about her hereditary condition.

As a small child with her family, Widefoot said, her life had been generally happy. However, because Widefoot's light skin burned easily, her parents kept her inside while the other children played outside. She doesn't recall her parents ever talking to her about why she was different, but her grandmother did tell her that some of her ancestors had had the same condition.

Life got tougher when Widefoot was sent to school. She couldn't see the blackboard well and other children teased her. And along with her ABCs, she learned the word "albino."

"I hated the word albino," she said. "Every time I heard the word, it stung."

Life got better when her parents enrolled Widefoot in the Mormon Church's Placement Program, and she was sent to live with a family in Mesa, Ariz. Widefoot said her foster mother was particularly kind and nurturing. During the two years she lived with the family, Widefoot said, she grew more confident in herself and more understanding of other people's ignorant
actions.

When Widefoot moved out of the foster home, she was capable of dealing with the behavior of her fellow students at the Southwest Indian School in Phoenix. "When kids stared at me, it didn't hurt as much," she said. "People tend to stare at what they don't understand."

Twenty years later, while researching on the Internet, Widefoot found herself staying up late into the night reading about a condition she had lived with all her life but knew very little about. She contacted NOAH, and the president of the organization called her back immediately; Widefoot was the first Native American with albinism to contact NOAH.

Not long afterwards, she was introduced to Guidotti.

Voices and images

The photographer had completed "Redefining Beauty," the first phase of "Positive Exposure," in which he had created slick, stunning studio photographs of people with albinism. The striking images looked like high fashion photographs. Now he was working on phase two, "The Spirit of Difference," where he was creating what he calls honest, individual portraits of people in natural settings.

"I'm really excited that Rick is coming out," Widefoot said. Since last year's news stories, she has received a number of phone calls from people with albinism. She is hoping they will make arrangements to meet Guidotti.

Guidotti will be accompanied by Dr. Diane McLean, an epidemiologist from Weill Medical College and co-director of "Positive Exposure."

No one is obligated to have his or her photograph taken, Widefoot said, but she would like to hear from people who would like more information about albinism, the support services of NOAH and the available products for people, such as software programs that magnify computer screens and other assistive visual aids.

For those individuals who do agree to be photographed, Guidotti will create a portrait for them to keep, and he will retain a copy for the "Positive Exposure"project. Videotaped interviews will also be conducted to include stories from participants. No photographs or interview material will be used without the written consent of each participant, Guidotti said.

He hopes to finish the project in about a year after travels to Africa, Asia and more trips to Native American reservations have been completed. "Positive Exposure" will then become a worldwide traveling exhibition.

Although Guidotti is particularly interested in photographing Indian people, he would like to meet and photograph anyone with albinism who is interested in the project.

On June 9, Guidotti will hold a special one-night exhibit of some of his photographs at the 2001 Peoples Genome Celebration at the Smithsonian's National Museum of Natural History in Washington, D.C., as a brief preview of the project.

"This is also one of the reasons why I find it very, very important to try and get photographs of Native American Indians now," he said, "so that I can actually make sure their voices and images are heard and seen in this exhibition."

Guidotti is passionate about "Positive Exposure" but is quick to shy away from ownership of the project. Everyone who has assisted with the project, he said, is part owner and has changed the project in some way.

He is also clearly in awe of the people and events in his life that have led him to this project. Phase two of the project was named "The Spirit of Difference" because of his belief that people's spirits shine through the photographs when they allow themselves and others to celebrate their lives.

How to reach them

Kathleen De La Rosa Widefoot can be reached at (520) 725-3356.

Prior to April 21, Rick Guidotti can be contacted at 43 E. 20th St., Sixth Floor, New York, N.Y. 10003; phone: (212) 420-1931; fax: (212) 228-0592; e-mail: RickGNYC@aol.com. His web site is at http://www.rickguidotti.com.

Messages about the project can also be left on the voice mail of Elizabeth Hardin-Burrola at the Independent: (505) 863-6811, ext. 218.

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Speaker's 'representative democracy' seems a little, er, absent
Reporter's column

Larry Di Giovanni
Staff Writer

Let me get this straight. Navajo Council Speaker Edward T. Begay and other Navajo officials traveled to places like Phoenix, protesting Arizona's Proposition 203, the "English-only" initiative. Such a law is not only an attack on the Diné language,
they said, but an affront to Navajo culture and sovereignty.

It was the speaker's legislative counsel, however, that rendered the legal scheme paving the malevolent path toward pursuit of criminal charges against the "Window Rock eight" the Navajo Board of Election Supervisors. We may find out this week whether the supervisors will be allowed to speak their own language, the Diné language, in their defense before a Window Rock judge.

Where is all that righteous indignation that spurred Prop. 203 opposition?

Think of it the tribe wants to use prosecutors who apparently don't speak Navajo, or at least not well enough to try the case in Navajo. So the answer is to punish the election supervisors by taking their language away from them in court? What's wrong, doesn't tribal DOJ have any Navajo prosecutors who can prosecute in Diné?

Maybe it's that the Department of Justice has far less confidence in its prosecutors who are Navajo. Maybe they just aren't aggressive enough. Maybe the non-Navajo attorneys win out again, and get their way. We'll see. It's "English-only" revisited.

The language issue facing election supervisors is only one of the latest examples of how the lopsided Navajo Nation government is flouting the will of the Diné people. From Cameron to Crownpoint, the message I'm hearing is the same: the power-crazed legislative branch openly mocks the people, growing in the comfort level that absolute power brings, sometimes even laughing at chapter resolutions. "That will never pass by DOJ," some delegates smirk about resolutions that, for instance, demand that the government pursue the people's water rights on the Colorado River.

I met over the weekend with members of the grass-roots Diné Sovereignty Defense Association, a group that says the Diné people can take hold of their government, and their water rights, if only they will take that next step. Many of them were respected elders.

They took umbrage at statements made last week by Speaker Begay, who defended the tribe's non-Navajo attorneys and called what the people have a "representative democracy."

"In a representative democracy," the speaker said, "this means that the Navajo people have voted on and adopted our present form of government."

The Diné Sovereignty members called this "misinformation for the uninformed." In other words, it is a highly inaccurate statement meant to prey on easily led people who don't know any better. (Actually, they don't believe you wrote your own Navajo Times column, Mr. Speaker, but that a non-Navajo attorney did it for you further substantiating their view that non-Navajo lawyers hold all the cards.)

This group's members know, like I do, that the Diné people have NEVER approved their present form of government. In a textbook published in 1999 by Diné College, University of Arizona Professor David Wilkins says, "The Navajo Nation Code does not expressly derive its authority from the Navajo people, since they were not the ones who established the government."

Back in the 1930s, Navajos had their chance at a true Constitution-driven form of government, but decided to pass on it. The people have rued the consequences ever since.

Speaker Begay, can you really say the people have a "representative democracy," when every major decision facing the Navajo Nation has been taken out of the hands of the people, either at the chapter resolution level or the elective level? Take the criminal charges facing the election supervisors. They were elected by the people, and the people so evident through their letters and private discussions don't want this prosecution.

The people's will ignored is true for any major subject casino gaming, control of the health care system on the reservation, delegates' pay raises. In each case, what the people endorsed either through their ballots or by chapter resolutions was bypassed. So don't tell me it's a people's government.

Look at the elective process. Seventy percent of the Navajo people who voted last Sept. 5 to downsize the council from 88 to 24 delegates were told their votes don't count. In this case the barrier comes from the Title 2 Amendments of 1989. Yet these amendments were never approved by the people. They were written by lawyers and approved by the council.

The Title 2 amendment that requires 30 percent of all tribal registered voters to place a reservationwide referendum on the ballot also negates the possibility of a "representative democracy." Thirty percent? This mark around 30,000 voters is next to impossible for the people to achieve. In a non-presidential election, the tribe is lucky just to get a 30 percent turnout.

I remember last fall how the U.S. presidential election was decided by a few hundred votes in favor of George W. Bush. Actually, the election ended up decided by a 5-4 U.S. Supreme Court vote that stopped ballot counting in Florida.

I recall how voters in that state who felt disenfranchised ended up in near-riot circumstances. We Americans, of which Navajos are a part of the melting pot, take our voting rights seriously. What would happen if 70 percent of the people in Gallup, or Farmington or Phoenix were told, "Sorry, but your overwhelming votes to reduce your elective body don't count?"

Well, there would be mass protests, perhaps even violent protest (though I don't endorse that). Demonstrations not seen since the Vietnam era would ensue.

So why do the Navajo people deserve any less?

Speaker Begay, you say the answer is for the people to elect new delegates, or run for delegate themselves. I say in such a lopsided "three-branch" government where all power is concentrated in one branch absolute power corrupts absolutely. It really doesn't matter who the delegates are. Once any new delegate is elected, the temptations are such (due to lax
enforcement of such things as accountability on mileage reimbursements) that those new to the scene will be corrupted.

The answer is major structural change within the government. The people have spoken; they want a smaller, more accountable council. The Title 2 Amendments must be overturned.

Last Sept. 11, your press officer wrote a press release, saying Fort Defiance Delegate Harold Wauneka had introduced a budget measure that included a plan for a Navajo-wide government reform summit. It was to include public forums for the people to express their views.

Also planned was the hiring of consultants to study the "preferred size" of the council. What happened? Why is this proceeding so slowly, and why aren't the people being informed as to any progress?

Perhaps this will continue moving so slowly that no changes will occur before the November 2002 delegates' and president's election. That way, the people will be stuck with 88 delegates for another four years.

The speaker's statement that "freedom of expression" is valued by the tribal government is belied by what I've seen. I've witnessed very competent Navajo employees speak out about the great problems within the government structure. Sometimes they're reprimanded and silenced, while others lose jobs and are blacklisted. What I see is more of a collectivist mentality within the Navajo government, similar to China's, where individual expression is frowned upon because it detracts from the existing power structure.

Mr. Speaker, you also make the statement that attacks on the government are coming from non-Indians. Beware of "the non-Indian effort to discredit other non-Indians within an Indian environment," you say.

First off, that sounds like a non-Navajo lawyer wrote it. Second, does it really matter who Navajo or non-Navajo points out legitimate problems within the government? I would agree that action necessary to correct such problems MUST come from the Diné people.

You can't expect other governments to respect yours, if you don't respect the will of your own people. The corrupt will fall. It's just a matter of how and when.

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Baseball team gets 'locked up'
Window Rock parents angry

Larry Di Giovanni
Staff Writer

FORT DEFIANCE, Ariz. — Members of the Window Rock High School boys' baseball team, the Scouts, got "locked up" on a recent road trip to the Phoenix area, staying overnight inside what two parents angrily described as a "jail."

The boys' varsity one and two baseball teams had traveled to the Phoenix area in late March for games with the Florence, Ariz., squad. The only problem was that the Scouts, under the direction of Athletic Director Bo Whitelock, reportedly came up against some problems with affording their overnight accommodations. The coach is Kevin Rhinehart.

So the team ended up staying at a Phoenix locale called Boys Ranch what parents Yolando Bowman and Romero Brown, president of the high school's Interscholastic Athletic Council, said is a juvenile detention facility.

"Some boys didn't even sleep on beds, they slept on floors," said Bowman, whose son, Reynaldo, 17, is a junior on the baseball squad. "The administration here at Window Rock High School, they're lucky that nothing happened to the kids. I think it shook up some of the boys."

Bowman said there was no way for him to contact his son at Boys Ranch.

"My son ended up sleeping on the concrete floor," said Brown, who added that most of the team members didn't end up getting much sleep. His son, Darrell, a freshman, plays second base and pitches for the varsity two team, similar to a junior varsity team.

The lack of sleep showed on the field. Brown said one boys' baseball team won a game, 10-9, then lost one by an identical score; the other team was swept by 2-1 and 17-0 scores.

Fifteen families upset with the situation signed their names and wrote down their addresses and phone numbers, which were forwarded to the Independent's sports department.

"Somebody dropped the ball, somewhere," Brown said of the flubbed trip.

Whitelock, who was unavailable for comment Wednesday, has been hospitalized and did not attend Wednesday night's Window Rock Unified Board of Education meeting.

The overnight "jail" stay for boys' baseball ties in with the fate of the high school's Interscholastic Athletic Council, Brown said. Since October, the council has been on hiatus, with its members waiting for a recommendation from a 14-member Ad-Hoc Study Committee. The committee consisting of principals, council members, coaches, and youths was charged with determining if and how the athletic council should continue to exist, Brown said.

The athletic council acted as a "mini (school) board" for the district, he said. It could, for example, accept resolutions. It had its own Constitution. Council members had apparently favored raises for coaches on par with schools in Tuba City and Ganado where they are paid $6,500 per year, according to Brown. At Window Rock High, the coaches earn $1,500.

"We're paying peanuts to our coaches, and that's why our athletic programs have really gone downhill," Brown said.

Brown contends that if the athletic council was still functioning, the Boys Ranch stay might have been avoided. The council liked to plan ahead and make sure all teams were to receive proper treatment on road trips, he said.

As of late Wednesday night, the four-member school board was expected to go into an executive session to discuss the fate of the Interscholastic Athletic Council.

A related issue is how far school teams should be allowed to travel and still receive district financing for trips. The current 250-mile radius from Window Rock High School doesn't stretch as far as Phoenix.

The athletic council's final disposition has seemingly divided the school board and administrators, Brown said. Whitelock and Superintendent Ronald Hennings have voiced support, while Brown contends that high school Principal Joe Gill and middle school Principal Ann Willyard oppose its continuation.

Gill, however, said he "can live with" the council, if that's what the school board and parents want.

Willyard said she did not attend the Ad-Hoc Study Committee meetings because another district employee, with the e-mail name "Annie W.," got her meeting notices through a computer mixup.

"I think community input in the athletic program is a valuable thing," Willyard said.

Brown said he thought school board President Theresa Galvan and board member Harold Wauneka were leaning against the program.

Just three board members attended Wednesday's meeting, with Floyd Ashley absent. The meeting, scheduled for a 6:30 p.m. start, was delayed by more than an hour due to Wauneka's tardiness. The board still has one remaining vacancy.

"I have to go to the executive session," Wauneka said curtly before he could be asked his view on the athletic council.

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Sky City using water from Grants

Tom Purdom
Staff Writer

PUEBLO OF ACOMA — A Milan water transport contractor is hauling between 18,600 and 31,000 gallons of potable water each day from Grants to the new hotel complex at the Sky City Casino. The hauling is under way while construction of water lines to the new facility are being completed.

Bruce Lynn of Hunter-Lynn Construction Co., Milan, contracted to haul the water from fire hydrants in Grants to the complex about 15 miles east of Grants along Interstate 40 in the Pueblo of Acoma.

Lynn said he set up the water deal with the city of Grants. "Acoma Enterprises pays for the water and then pays me for the hauling services. It's no big deal," Lynn said. "They need the water while they get their (water) wells plumbed in."

The Milan man hauls the water in a 6,200-gallon stainless steel commercial grade water tank he bought in late February. Lynn said he bought the tanker in anticipation that water-hauling contracts may crop up in the area...

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Prewitt man killed by train

Tara Drolma
Staff Writer

GRANTS — A Prewitt man died instantly Tuesday afternoon when he was hit by a train near Santa Fe and Fourth streets.
Chris Jack, 47, of Prewitt was hit by an eastbound train around 4 p.m.

Grants Police Lt. Steve Bell said the train engineer, whom he did not name, saw Jack lying between the rails of the north track. Bell said the train crew saw Jack lift his head up as he heard the train, but there was not enough time to stop.

Bell said it is standard procedure when a death occurs to investigate it as though it were a crime scene. There were several Grants Police Officers at the accident scene, and they diagrammed, measured, and photographed the area.

Although there was an investigation, Bell said he did not see any reason for criminal charges to be filed in the case...

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Deaths

Lester Ricky Mike

GALLUP — Services for Lester Mike, 36, will be held at 10 a.m. Friday, April 13, at Rollie Mortuary Palm Chapel. Pastor Colbert Sherman will officiate. Burial will follow at Lone Pine Cemetery, Mexican Springs.

Mike died April 9 in Gallup. He was born May 7, 1964, in Gallup into the Towering House People for the Red House People Clans.

Survivors include his wife, Irene Kee of Gallup; sons, Michael Kee and Lester Mike Jr., both of Gallup; daughters, Jeannie Kee of Gallup and Regina Kee of Sheepsprings; parents, Keith Mike Sr. of Pinon, Ariz., and Mary Ann Gruber of Yah Ta Hey; brothers, Edgar Mike of Prewitt, Keith Mike Jr. of Naschitti, Ernest Gruger and Winston Mike, both of Yah Ta Hey.
Mike was preceded in death by his sister, Cornelia Mike and grandfather, Benjamin Becenti.

Rollie Mortuary is in charge of arrangements.

Katherine M. Etherton

GALLUP — Graveside services for Katherine Etherton, 86, will be held at 10 a.m. Friday, April 13, at Hillcrest-Fairview Cemetery, Las Cruces.

Etherton died April 10 in Gallup. She was born Oct. 31, 1914, in Oklahoma.

Survivors include her son, Lawrence Etherton of Gallup; daughter, Helen Stoutimore of Henderson, Nev.; brother, Kenneth Guynn of Las Cruces; sister, Louise Dickens of El Paso, Texas; five grandchildren and nine great-grandchildren.

Etherton was preceded in death by her parents, Alexander and Mabel Guynn.

Rollie Mortuary is in charge of arrangements.

Dona J. Richardson

LAS CRUCES — Dona J. Richardson, 70, died April 6 in Las Cruces.

Internment of cremains will take place at a later date in Santa Fe National Cemetery.

Richardson was born April 20, 1930, in Peoria, Ill.

She was employed with JC Penny's as an office supervisor. She was a member of the Order of Eastern Star.

Survivors include her daughter, Carol Sandoval of Las Cruces; sister, Nancy Genoff of Las Vegas, Nev.; and two
grandchildren.

James Carl Watchman Sr.

HOUCK, Ariz. — Services for James Watchman Sr., 62, will be announced at a later date.

Watchman died April 11 in Gallup. He was born Aug. 20, 1938, in Houck into the Zuni Division of the Red Running into the
Water People Clan for the Edge of the Water People Clan.

Rollie Mortuary is in charge of arrangements.

Mary H. Largo

GALLUP — Services for Mary Largo, 88, will be announced at a later date.

Largo died April 10 in Gallup. She was born July 4, 1912, in Smith Lake into the Towering House People Clan for the Start of the Red Streak People.

A family meeting will be at 6 p.m. tonight at Smith Lake Chapter House.

Rollie Mortuary is in charge of arrangements.

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