Albinism, from the Latin “albus,” meaning “white,” is a group of hereditary conditions with striking results — a dearth and often complete absence of pigment in the eyes, skin and hair.
In the United States, about 1 in every 18,000 to 20,000 people have albinism, according to the National Organization for Albinism and Hypopigmentation (NOAH). Meanwhile, in parts of Africa such as areas within Zimbabwe, as many as 1 in 1,000 have albinism, according to the United Nations.
What might the world be like if everyone on Earth had albinism, from prehistoric times until now? SOUND
A range of appearances
The most common form of albinism in the United States is oculocutaneous albinism, which interferes with the production of the dark pigment melanin in both the eyes and skin, according to NOAH. To date, there are seven known subtypes of this kind of albinism, which doctors have named OCA1 to OCA7, NOAH noted. Depending on the subtype, people may have white, blond or brown hair.
“I have OCA1, the most severe type of oculocutaneous albinism — I have no pigment in my hair, skin and eyes,” Kelsey Thompson, a rehabilitation counselor in the Chicago area, told Live Science. She previously served for 10 years on the board of directors of NOAH, including as its chair.
A common myth is that people with albinism have red eyes. Although lighting conditions can make the blood vessels at the back of the eye visible, which can result in the eyes looking red or violet, most people with albinism have blue eyes, and some have hazel or brown eyes, NOAH noted. Thompson’s eyes are light blue.
One key concern for people with albinism is the delicacy of fair skin. Melanin, a pigment found in hair and skin, protects skin against ultraviolet light, and people with albinism have to be wary of sunburns and skin cancer.
“When I was younger, I was a little cocky about sun exposure, and got severe sunburns,” Thompson said. “Throughout my life, I’ve gotten in the habit of being more cautious and mindful about the sun, using sunscreen and seeking out shade as often as I can.”
So if everyone had albinism, what would happen? One scientist interviewed for this story thought this factor alone made it extremely unlikely that populations with albinism would survive over time.
“That’s disappointing, but not surprising,” Thompson said. “I think a lot of people who don’t have the experience of living with albinism see it as they would any disability — what a horrible fate to have, how it would be so awful to not do even daily tasks without struggle. But it’s not a death sentence.”
If everyone had albinism, people around the world might adopt long garments to protect their skin, like desert peoples in the Sahara, and hats, scarves or veils to protect their heads and faces. They might also rely on protective coatings on their skin to serve as sunscreens. The women of the Himba people in Namibia regularly wear an orange or red paste known as otjize that is made of butterfat and ochre, and often perfumed with the aromatic resin of the omuzumba shrub. Although Himba women use otjize for aesthetic reasons, I can imagine a population with albinism could conceivably create a similar paste to serve as sunscreen.
In addition, “I can imagine cultures probably evolving to do more daily activities outside the peak hours of sunlight — more in the early morning and late afternoon,” Thompson said.
Those with albinism might prefer to make their homes in shady environments and less sunny latitudes — think Norway, not Arizona. “I still enjoy going out to the beach with my family,” Thompson said. But “I do think there are parts of the world that would just be inhospitably sunny for people to even consider living there if everyone had albinism, like certain parts of the Middle East and American Southwest. Still, I do know people with albinism living in Southern California and loving it.”
People with albinism have vision problems because structures within the eye rely on melanin as they develop in the womb. “My best visual acuity is 20/200, making me legally blind,” Thompson said. “I have full color vision, but the details I can see are poor. It’s not that things look blurry, but it’s like the difference between a high-definition TV and a TV from the ’80s. People with albinism can also have photophobia, or be more sensitive to glare from light.”
These vision problems might lead one to expect that preindustrial societies in a hypothetical past where everyone had albinism would have extraordinary difficulty surviving. “However, there’s a lot of variation in vision in albinism, in what you can do,” Thompson said. “I have to use certain accommodations for my vision every day, but I can function pretty independently. With albinism, an advantage we have is that we haven’t lost anything with vision — this is all we’ve ever known. To me, this is normal.”
For instance, “I know people with albinism who are skilled hunters,” Thompson said. “I’ve been involved with albinism organizations my whole life, and every time I think there’s a task or job that there’s no way a person with albinism can do it, sure enough, there’s someone doing it.”
So, if the entire human population had albinism, we might use canes, seeing-eye animals and perhaps even echolocation to help navigate the world. Still, there are people with albinism with enough functional vision to drive, Thompson noted.
“My younger brother has the same type of albinism as me, and when we sit in the optometrist’s office, his vision tests pretty similarly,” Thompson said. “But he adapted to it. He was even a hockey goalie. He didn’t watch for the puck, but looked at the players to tell when the puck was coming toward him.”
People with albinism with low vision may rely on magnifying glasses and handheld telescopes to help read, “or just hold newsprint closer to the face,” Thompson said. “But a lot of the times, we use these aids to accommodate to the sighted world. If a world evolved only with people with albinism, I’d imagine all print would be large print.”
Thompson does think preindustrial societies with albinism would likely rely more on agriculture than on hunting. Other possibilities include trapping and fishing with a pole or net, activities that don’t require keen eyesight.
People with albinism often face stigmatization worldwide because of how they look. They are often villains in stories — for instance, the evil monk Silas in “The Da Vinci Code,” (Doubleday, 2003). Dozens of people with albinism have even been murdered for their body parts in Tanzania, according to The New York Times and other sources.
“Some people with albinism grow up in a very supportive environment and didn’t face a lot of negativity, whereas others are pretty traumatized,” Thompson said. “My experience was middle of the road — not too terrible, but I did experience a lot of bullying as a kid. As an adult, it’s more of a little annoyance. I get rude and invasive questions, and people wanting to touch my hair. It’s really inappropriate behavior, and people normally wouldn’t dream of crossing those boundaries with a total stranger, but when you have a visible difference like albinism, it comes with the territory.”
Of course, in a world where everyone has albinism, there would almost certainly be no stigma attached to it. Instead, albinism might be viewed as a feature that sets humanity apart and above the rest of nature, along with language and tool use.
“It would be interesting to think about how perception of race might change if everyone had albinism,” Thompson said. “A friend of mine from India has the same type of albinism I do, and she and I look more alike than my brother and I, even though we come from two very different ethnic backgrounds.”. All in all, she suggests that if everyone had albinism, “that might really change what judgments we make about each other in terms of appearance.”
Albinism might influence societies other ways. “When I’m talking with a group of people who all have albinism, we do things a little differently than when functioning in the regular world,” Thompson said. “When we see someone you know, I introduce myself almost like I’m on the telephone — ‘Hey, Matt, it’s Kelsey’ — because we know the other person doesn’t see so well. And maybe we stand a little bit closer to each other because of our poor eyesight.”
Such greetings and adjustments to people’s personal bubble of space might become standard features of society in a world where everyone had albinism, Thompson said.
In addition, “there’s a lot of nonverbal communication that people with low vision have to be taught, like making eye contact,” Thompson said. “I have nystagmus, so my eyes shake a little bit, and I have trouble seeing a person’s eyes, so I was taught how to make eye contact, and think about things like not staring non-stop. Those are the kinds of things I’ve learned to assimilate to the sighted world.”
So, if albinism was the default, the norm of making eye contact might not be a norm anymore.
“This is a really unusual mental experiment,” Thompson said. “It’s challenging thinking about albinism as a norm, and how that would change how that would think about the world and about myself.”
livescience.com, 16 October 2020