but not nearly as well as they otherwise would and it could make it impossible to drive. Their eyes are also very, very sensitive to light so they need to wear sunglasses when they go outside.” Some people with albinism may also have a problem with binocular vision, in which the development of the visual system is not quite right, Korf says. Normally people would have depth perception, the ability when looking at something to perceive whether it’s nearby or far away. But those with oculocutaneous albinism have a hard time with that.
EFFECTS ON SKIN In addition to vision problems, people with albinism must be extremely cautious with their skin. “We always have a hat with a brim in the car for Noah,” Pickett-Miller says. “He wears prescription glasses with transition lenses. We have the darkest tint allowed by law on our vehicle’s windows as well as a window shade. The biggest thing is educating caregivers and teachers at his learning center about the importance of applying sunscreen.” Indeed, Korf says the biggest medical burden for people with albinism is sunburn and skin cancer. “It takes a lot of vigilance,” he says.
SOCIAL EFFECTS Of course, like anyone who is regarded as outside society’s norm, people with albinism can face mocking and harassment as evidenced by the previously mentioned movie. But even strangers’ curiosity can be overwhelming and many times rude. “Early on we spent a lot of time explaining,” Pickett-Miller says. “People are attracted to babies and couple that with anything unusual and that just magnifies the amount of attention.” Even a simple trip to the grocery store could become an event. “For me, it meant practicing a lot of avoidance. ‘Do I take Noah or not? Do I want to answer all the questions today? What do I say when someone stops to talk about him?’ It took a lot of energy to be sympathetic to others’ concerns.” In a webinar called “Stares, Smirks and Shout-Outs,” (http://www.youtube. com/user/NOAHAlbinism? feature= watch) Kelsey Thompson, a licensed clinical professional counselor and a member of NOAH’s board of directors, discusses three types of negative experiences that people with albinism often face. Those are:
The silent – stares, pointing, smirks The rudely curious – questions that aren’t meant to be hurtful but can be annoying and embarrassing The curiously rude – yells or questions that are meant to humiliate If you or your child falls into one of these categories, think about how you’d feel if your child were on the receiving end of cruel jokes. “This is a part of our reality,” PickettMiller says. “And while we should be sensitive to all stereotypes, there are just not enough positive images in media of people with albinism. The jokes in that movie just reinforced the idea of ‘this is weird, this is abnormal.’ When it happens, I wonder how Noah would feel about himself if he saw this movie.” Also, the preferred term is “a person with albinism,” not “albino.” “Saying ‘albino’ is placing the condition before the individual, his physical characteristics before him,” Pickett-Miller says.
AMAZING INDIVIDUALS Dan Oates, educational outreach specialist at the West Virginia Schools for the Deaf and the Blind, wants everyone to know that members of the albinism community are amazing. “In my 34 years of working with blind and low-vision children, I have found the children with albinism to be my favorite kids,” he says. “They are intelligent and most of them are a little ‘energetic’ – those are my kind of kids!” Each year, Oates, also a NOAH board member, brings a group of students who are visually impaired to Huntsville’s Space Camp. In fact, one world-class photographer left his career in high fashion to show the world the beauty of these amazing individuals: “One day, on a break from a photo shoot, a chance encounter on a Manhattan street changed everything. Rick Guidotti saw a stunning girl at the bus stop – a girl with pale skin and white hair, a girl with albinism,” his website says. Tired of being told who deserved to be photographed, Guidotti set out to expand the definition of beauty when he established Positive Exposure. According to its website, http://positiveexposure.org, the organization “utilizes photography and video to transform public perceptions of people living with genetic, physical and behavioral differences – from albinism to autism. Our educational and advocacy programs reach around the globe to promote a more inclusive, compassionate world where differences are celebrated.”
Second Annual Noah for NOAH Bowl-a-Thon March 22 Oak Mountain Lanes in Pelham 12:30-2:30 p.m. Donate online and get details by visiting http://noah.kintera.org/ bowl/noah4noah Questions? E-mail niypic@gmail.com National Organization for Albinism and Hypopigmentation, NOAH www.albinism.org/publications/ what_is_albinism.html BEAUTIFUL DIFFERENCES Everyone is different. How boring it would be if everyone were alike. Allowing people to be who they are without repercussion would be wonderful. Pickett-Miller cited Beyonce’s music video for her song “Pretty Hurts” as a good starting point. “In the same week that I saw a negative representation of albinism in the media with “The Heat,” I also saw Beyonce’s ‘Pretty Hurts,’ which features a beauty pageant. The queen is a contestant with albinism. I took it as a little nod to us as a reminder to be a positive voice and keep working. If I ever meet Beyonce, I’ll tell her thank you.” An albino tiger, an albino gorilla, an albino whale are considered precious and rare. Why aren’t humans as precious? “We see animals with albinism and we tend to view those animals more favorably,” Pickett-Miller says. “Yet in people, we’re taken aback or even afraid. “When people see Noah, I’d like for them to say, ‘Wow, that’s cool! How unique! That color of blond is beautiful! We can’t replicate that.’ ” To learn more about albinism or help raise awareness, join Noah, Pickett-Miller, her husband, David; and their daughter, Nalla, on March 22 at Oak Mountain Lanes in Pelham for the 2nd annual Noah for NOAH Bowl-a-Thon. Tiffani Hill writes about parenting, pop culture and girl power. As mom to a tween, she finds creative ways to guide her daughter through the highs and lows of growing up. Contact her at tiffanihill@icloud.com or learn more at http://tiffanihill.com. birminghamparent.com | 23