My parents say that when I was a toddler, I would go up to anyone who would listen to me and introduce myself by saying, "hi. I'm Low Vision." Obviously, as a three year old, I didn't really understand what that meant, but I knew from a pretty young age that there was something different about me. Hello and welcome to Albinism: More Than Meets the Eye.

I'm your host, Esther Rosi-Kessel . I'm 18 years old at the time I'm releasing this, and I have albinism. In the next five episodes, I'll be talking to people within the albinism community about aspects of living with albinism that most people might not think about, including community, media representation, and how albinism plays into identity.

Most people don't know much about albinism. I mean, why would they need to? Only about 0.01% of the population has albinism. Unless you have a connection to someone with albinism, it's probably not something that ever crosses your mind. If you're one of those people, welcome, I'm glad you're taking the time to learn.

If you are someone you know has albinism, welcome as well. I'm glad you're here. My goal with this podcast is to create a space for people who might not know a lot about albinism, to educate themselves as well as a space for people with albinism to make their experiences heard and maybe even learn something new about themselves.

But to do this, I need to start with some background information.

So what exactly is albinism? Albinism is a recessive genetic condition, which means that both parents have to have a copy of the albinism gene for their child to have albinism, and even then there's only about a 25% chance that their child will have albinism. Albinism, or more specifically, oculocutaneous albinism affects melanin production in the hair, skin, and eyes. Oculo means eyes, and cutaneous means skin, so that's where you get the name Oculocutaneous albinism, also known as OCA . There are multiple subtypes of OCA that I'm not gonna go into in depth, but for anyone interested, I'm including more information on my website Under the episode notes at meetstheeyepodcast.com. The type of albinism I have is called OCA 1B. There's also a type of albinism called ocular albinism or OA in which only the eyes are affected. I'm mainly going to be focused on OCA in this podcast. People with albinism generally have light skin, white, blonde, or even reddish or light brown hair, and their eyes can range from being so light that they look red, pink, or purple in certain lightings to blue, to hazel , to brown. I'm just telling you this to say that there's no one "look". A lot of people think that albinos always have white hair and red eyes, but the truth is, no one actually has red eyes. Some people's eyes look red in certain lighting because of the lack of pigment in their eyes. Their eyes are basically clear or very, very light blue, and so the red you're seeing is the light reflecting off of the blood vessels in the back of their eyes.

I personally have blonde hair and blue eyes, so people tend not to know that I have albinism unless I tell them. Albinism is more than just appearance, though. Melanin plays an important role in the development of the eyes, so when someone's body does not produce melanin, their vision is affected. People with albinism all have some level of visual.

Many people with albinism are considered legally blind, but contrary to what many people believe, blind doesn't mean we can't see anything at all. In the United States, legal blindness is defined as having a visual acuity, or sharpness of vision, of 20/200 or worse, even with correction like glasses or contacts. Legal blindness can also refer to having a small field of vision, but for albinism, acuity is the main thing affected. 20/20 is "normal" vision, and so as the second number goes up, the visual acuity decreases. This means that someone with 20/200 vision would have to be 20 feet away to see something that someone with normal vision could see from 200 feet away. My vision, for example, is around 20/70 with my glasses, which means that I need to be 20 feet away from something to see what someone with normal vision would see from 70 feet away. That's actually a relatively good vision for albinism. People with albinism also have a condition called nystagmus, which means that our eyes shake back and forth uncontrollably. We don't usually see the world shaking like you might think, but it does affect our vision. We're also really sensitive to light because pigment helps the eyes to absorb light, and so we don't have a lot of protection.

What might surprise you is that, at least for myself and most other people with albinism that I've talked to, is that our vision isn't blurry, at least not to us. I like to describe it as low resolution. Imagine watching an old TV : you're able to see everything, but if there are things like small text on the screen or faces that are filmed from a distance or other small details, you probably won't be able to read or see them clearly.

Just a note on language: you may notice that I say person with albinism more often than albino . In general, I believe that identity first language is preferable to person first language. That would mean, for example, saying disabled people as opposed to people with disabilities. But the word albino is pretty controversial in the albinism community.

Some people don't mind the word albino or even prefer it, but some people have had bad experiences with it being used against them as an insult, or they don't like the connotations of the word al. I personally prefer if non albinos don't refer to me as albino because I feel like it has an association with say, albino rabbits, or albino villains in movies. But again, it completely depends on the person. 

Okay. So now that I've gotten the complicated medical info out of the way, let's talk about what this means for people with albinism. One of the most obvious things about albinism is that it makes you stand out, especially if you have white hair or come from a family or area where most people have darker skin and hair.

As you can imagine, this can lead to unwanted attention or bullying. Many people with albinism experience feeling isolated from the people around them. They make efforts to fit in even if those efforts could be harmful, like trying to hide visual impairment by trying to read things from further distances that are comfortable, which can lead to eye fatigue or refusing assistive devices that while useful could make them seem different.

I often feel the need to mask my visual impairment, even when people around me know that I can't see. For example, I find myself holding text much farther away from my face when I'm around others than when I'm alone, even though it's less comfortable and takes me longer to read at that distance, and I've actually become sort of insecure about reading in public, unless it's on a screen where I can change the font size. I have trouble accepting anything that would make my visual impairment more obvious, even when I know it could make my life easier. 

Obviously, albinism isn't a new thing. People with albinism have historically been treated differently for their appearance. For example, in the first half of the 20th century, people with albinism were sometimes exhibited in circus sideshow, also known as freak shows.

George and Willie Muse, for example, were two Black brothers with albinism from Roanoke, Virginia, who were put into the circus against their will as children, where they worked for the next four decades and were exhibited as ambassadors from Mars and other similarly outrageous things. If you've watched The Greatest Showman, you might also remember two albino twins as background characters in the Freak Show. They were played by non albino actors.

Because of how different people with albinism can seem from what most people are used. They have sometimes been the subject of curiosity and suspicion. Thomas Jefferson, for instance, was fascinated by Black albinos. He described several people with albinism from Africa in his notes on the state of Virginia, with specific regard to the fact that they had no white ancestry and that the rest of their families were Black. It's likely that he felt threatened by this contradiction to his idea of race and the racial hierarchy.

Hurtful and dangerous superstition surrounding albinism still exists today. In many sub-Saharan African countries, including Tanzania, Malawi, Kenya, and Zambia, there's a belief that albinism is a curse and that people with albinism are in some way supernatural or magical. As a result, people with albinism can be mutilated or killed for their body parts, which are said to bring good luck.

According to the charity organization, Under The Same Sun, there have been over 620 reported attacks on people with albinism across 30 countries since 2006. In recent years, however, more attention has been brought to this issue and political figures worldwide have condemned these killings. Tanzania and Malawi have both elected government officials with albinism within the past 15 years. There have also been some protections put in place for people with albinism, but these attacks are still going on. Many people with albinism in Sub-Saharan Africa still do not live past the age of 40 often due to skin cancer caused by a lack of sun protection. 

Albinism actually has a higher occurrence in African countries than most other places. According to the office of the United Nations High Commissioner for Human Rights in 2021, between one in 15,000 to one in 1,400 people have albinism in Tanzania, as opposed to around one in 20,000 worldwide. 

One of the highest occurrences of albinism is in Panama, in the Guna indigenous group where the treatment of people with albinism is vastly different from everything I just talked about. In Guna mythology, people with albinism are said to protect the moon during lunar eclipses, so they're known as "children of the moon". Although people with albinism in Panama still face the threat of skin cancer due to the intense sun, I do think it's interesting to note that albinism is not always seen as a bad thing.

I know that a lot of what I've talked about so far might sound pretty depressing, and obviously there are some pretty serious issues around albinism. But I promise it's not all bad. Like I said before, there have been pretty major improvements in awareness and action around human rights violations on people with albinism, and there are also some great nonprofits working worldwide to advocate and improve education and protection for people with albinism and to connect people with albinism.

Technology has also come a long way in making the lives of many people with albinism. Even just having a cell phone means that I can zoom in on small or far away texts that I wouldn't have been able to read otherwise. There's also technology like digital magnifiers, distance cameras, and text to speech technology, and of course non-digital things like traditional magnifiers and monoculars, and hats, UV protective clothing, sunglasses and sunscreen to protect us from the sun. Unfortunately, these resources aren't readily available everywhere, but again, there are organizations that are working to make sure that they. 

People are also becoming more aware of the need for people to see themselves represented. So although there's still not a ton of positive albinism representation so far, there have definitely been a few recent examples of people with albinism being represented in politics and media. Social media also gives people a platform to share their experiences and spread awareness. And that leads me back to my goal for this podcast to create a place where people with albinism can share their experiences and a place to learn .

I hope you learned something new from this episode. If you found this interesting, please come back for the rest of the series where I'll be interviewing people in the albinism community. I'd also love it if you checked out my website, meetstheeeyepodcast.com, for some notes on the things I talked about in this episode.

Thank you for listening!