She's living with albinism and is now telling the world

Utah teen's short film part of Qatar Film Festival

Published: Saturday, March 9 2013 1:15 p.m. MST

Megan Palmer checks out her gear while at home Wednesday, March 6, 2013. Megan and her cousin Jenica Woolley worked produced a short film discussing Albinism.

Scott G Winterton, Deseret News

SALT LAKE CITY— Megan Palmer is used to getting noticed, just not in international film festivals.

That’s why Palmer, a 16-year-old Woods Cross High School student and filmmaker who has albinism, was shocked when she found out her film about the rare disability was up for four awards at the THIMUN Qatar Film Festival about 8,000 miles from home.

Palmer and her cousin Jenica Woolley, who lives in Qatar, coordinated across continents to create the film, titled “Dancing Eyes,” as a way to reach out to families who suffer from albinism and educate those who understand little about it.

“Albinism is a struggle physically, mentally and emotionally,” Palmer said. “You want to be like everyone else. People feel like, ‘I’m the only one who was suffering from this.’ The most major thing for me is that people know they are not alone, and there is hope for them.”

The eight-minute entry features interviews with children, teenagers and their parents about albinism and is nominated for Best Picture, Best International Picture, Best Story and Best Sound. It’s also eligible for the festival’s People’s Choice Award, which is determined solely by YouTube views and shares.

“It was a shock to find out we’d been (nominated),” said Palmer, whose 13-year old brother Adam also has albinism. “I didn’t know we’d get it that far.” 

Albinism is a genetic disorder and indicates a lack of pigment in a person’s skin, hair or eyes – and sometimes all three. This can lead to extremely sensitive skin, very white skin and/or hair, blindness or partial blindness, rapid eye movement and problems with depth perception.  

For Palmer, this means using heavy-duty contact lenses and keeping sunscreen and sunglasses nearby. Although Palmer has strawberry blonde hair and her skin is less white than many others who have albinism, the condition affects her on a daily basis.

 “I love the outdoors, but I always take precaution," Palmer said. "I can lightly burn after 5 minutes if I’m not careful."

Palmer also uses a long white cane to guide her 20/100 vision when she visits somewhere unfamiliar. But she's quick to point out that there is a positive side to her visual impairment.

"I usually use brail when I have to do public speaking," Palmer said. "It looks to the audience like I have it all memorized cause I’m just running my hand along the page."

Albinism is classified as a rare disease by the U.S. Department of Health and Human Services. It affects about 1 in 17,000 Americans and is so rare that even the National Organization for Albinism and Hypopigmentation (NOAH) doesn't collect state-by-state statistics.

Palmer said the tight-knit albinism community in Utah totals about two dozen people with the condition.

Kaysville resident Kim Crowther has a son and daughter who each suffer from albinism. Austin, 16, and Asia, 14, are friends of Palmer and consented to be interviewed as part of the film. But according to Crowther, their albinism is sometimes the cause of ridicule at school and intense staring in public. It’s made her children guarded about what they share.

“Had it been for anybody else besides Megan, we may have hesitated,” Crowther said. “My children don’t always enjoy the attention. We were fine to do it for her because it helps educate people about it. … Megan’s really bringing attention to the fact that there’s no developmental difference at all in these kids except for the visual impairment.”

Palmer said she is using her film to educate a public used to seeing those suffering from albinism in a much more negative light on the big screen. If someone has albinism on screen they are usually playing the role of a villain, with notables in "The Matrix Reloaded," "Cold Mountain" and "The DaVinci Code," among others.

"It’s sad. When people see someone with albinism on the street, their only impression so far has been negative," Palmer said.  

But Palmer is used to being an agent for change and accepting challenges.

The Utah chapter of the National Foundation for the Blind hired Palmer as a mentor for their Project STRIVE initiative when she was just 14. Project STRIVE — Successful Transition Requires Independence, Vocation & Education — is a program to give confidence to young people.

She also plays Goalball, a Paraylmpics sport for the blind similar to soccer, and was a member of Utah’s national championship winning team in the high school-age category in November.  

“As parents we are extremely proud. When a child is born with a disability, there’s just no way of knowing what the future holds for them,” said Marla Palmer, Megan’s mother. “She’s spent her time bringing so much hope to the people around her. She reassures them it’s going to be OK.”

And her daughter’s new film, she said, is already beginning to make a difference.

“We even got a phone call from a Mom who saw the video,” Marla Palmer said. "She said,  ‘we have a young daughter with Albinism, can we please meet up?’"

Palmer is trying to raise funds for a trip with her mom to the film festival’s award ceremony April 11-13 in Qatar. Those interested in her film can boost her chances at receiving the People’s Choice Award by viewing and sharing her YouTube video

E-mail: blockhart@deseretnews.com, Twitter: @benlockhart89

Get The Deseret News Everywhere

Subscribe

Mobile

RSS