Well, hello there. Has anyone ever asked you if your hair is real or has anyone told you that you need to spend more time outside? Has anyone asked you why you're wearing sunglasses when it's cloudy outside or it's the winter? Has anyone ever compared you to a ghost? If so, you probably like me have albinism. And in addition to the low vision, we often receive comments about our physical appearance. Whether it be our pale skin or white hair. People often recognize that we look different from most other people in our communities, which can be very exhausting and lead to some low self-esteem. To celebrate international albinism awareness day, which occurs every year on June 3rd. I wanted to discuss what albinism is and how I learned to accept the physical features I have because of it Getting to the point where “white hair don't care” is your motto is by no means an easy task, but I wanted to in the next 25 minutes share some of the lifestyle and mindset changes I made that helped me feel more confident in my body.
Hi, everyone. I hope you all are doing well and enjoying your summer so far. I filmed or recorded. I always feel the tendency to say film. I recorded this episode in two different locations. Some of the segments I did at home while some others I recorded in my college dorm. I cannot believe I am saying that. All I have to say is recording in a dorm is very interesting because there's actual construction going on right outside. So every few minutes there's like this drill that goes off. So I have to be very strategic about when I record. The elevator in my dorm is also very loud. It almost makes this sound when you go down, like think the tower of terror. That's how I felt. The first time I went down it because I was not warned.
I guess, one of the strangest things about living in a building with so many other people is that there will just occasionally be these loud crashes. And if you were at home, it would concern you. But in a dorm it's like, oh, that's just somebody trying to take out the trash or somebody slamming their door. It's all normal. Anyways, I'm here for a summer program till the beginning of July, and I've only been here a week, but I already think I could make an entire episode about all of the awkward moments and tips I've gathered about living on a college campus with a visual impairment, but for now, we are here to discuss and celebrate international albinism awareness day, which is on June 13th.
When I was thinking about this episode, I realized that I had mentioned that I had albinism in other episodes, but I had never really fully discussed or defined what it is. My goal with the podcast, at least initially, was to make episodes that anybody who is blind or visually impaired could relate to, not just people with albinism, but since the holiday is coming up, I thought I'd give it a little extra special episode. I'm going to start off with a crash course on albinism, Albinism 101 if you will. If you personally have albinism or know someone really well who has albinism, you will know all of this information. So if that's you feel free to skip a few minutes ahead.
What I mainly wanted to talk about today was how the unique appearance that I have because of albinism influences social interactions, and my self-esteem in The Art of the Blind Joke I had discussed. I had learned to accept my blindness and view it more positively, but I feel like I was missing out on a whole other element of the story just by focusing on the vision alone. I think most teens and preteens struggle with some form of body insecurities, but I think when you have albinism, those can be amplified because your appearance is drastically different than most of your community. As a result, people are more likely to ask questions about it or point it out. And even if they're doing it in a positive way, it still can cause you to put more focus on it and be critical of yourself. So without further ado, let's get into the, and crash course.
I first went to read a quote from NOAA's information page about albinism. One would think that after being an albino for 18 years, I would be able to come up with a concise definition for the condition on my own, but that’s not what you're getting. Albinism is an inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair, and or eyes. Albinism occurs in all racial and ethnic groups throughout the world. In the US approximately one in 18 to 20,000 people have some type of albinism and in other parts of the world, occurrences can be as high as one in 3000.
To be honest, I'm not a STEM kid. So I was never that interested in the science or the genetics behind albinism. But essentially it's a recessive trait. So most people who have it inherit an albinism trait from their mother and father who usually have normal pigmentation. There are also several different types of albinism. Some will only impact your vision while others will affect your hair and your skin. Today researchers have found seven different types of albinism, and I'm not going to go into detail about them, but NOAH does have more information if you're interested. I've actually never been tested. So I don't know which type of albinism I have.
Unsurprisingly people with albinism do have vision problems, which is why I have a podcast titled Legally Blonde & Blind. According to NOAH, the abnormal development of the retina and abnormal patterns of nerve connections between the eye and the brain cause low vision. There is a lot of variety with vision in the albinism community. Some of us are considered legally blind, which is defined as the visual acuity of 20/200 or lower while others have enough vision to drive.
Many of us have nystagmus, which is involuntary, rapid eye movement. You can go up and down, side to side, or in a circular pattern. What this does though, is it blurs our vision and reduces our depth perception. When I was little, I slammed my head into a library door. It was one of those thick fireproof doors, and I hit my head right on the, um, metal hand. And I had this big nasty gash. It wasn't my fault, by the way, surprisingly. Anyway, when we went to the ER, when the doctor came up to us, he had a heart attack because he saw my eyes shaking, but he didn't know I had nystagmus. So he thought I had sustained serious brain damage, but no, it's just nystagmus. And another interesting tidbit is that we normally can't feel it. At least I can't feel it unless I'm super tired. So we pretty much don't notice it.
Finally, people with albinism are more susceptible to strabismus, I hope I'm saying that right, which is a fancy way of saying there's a muscle imbalance in the eye that causes a lazy eye or a cross-eyed. I actually had this when I was younger. And most of the time you can get that corrected, but you can't do too much about the nystagmus and the low vision. However, vision is only part of the story.
People with albinism are also very light-sensitive. I personally need to wear sunglasses pretty much every time I go outside. And I usually put on a hat too. My favorite sunglasses are Ray-Bans because they're normally very dark and they have a lot of pairs with polarized lenses. They also have very thick frames that make sure that glare doesn't come in from the sides of your face. But generally, I prefer softer dimmer lighting.
This one is probably obvious given the pale skin, but we're also very susceptible to sunburns and consequently different types of skin cancer. If I'm outside for more than 10 to 20 minutes, the sunscreen has to go on. One frequently asked question about albinism is can we go to the beach or other tropical places? Some of us may not like these locations as much, but it's not as if it's completely impossible for us to visit those places. I never liked to say we flat out can't. It is more challenging in some regards because we have to put on sunscreen more often and we're more light-sensitive. But if you're in the middle of a beach, for example, there are sunglasses, hats, UV, protective clothing, rash guards, and other tools at our disposal that allow us to do any outdoor activity that a pigmented person would want. Like I was saying before, as silly as it sounds, I do actually enjoy sunbathing and going to the beach, which gives my mother a heart attack because I am known for wearing the least practical clothing to the beach. Some people with albinism were like the rash guards and the swim trunks. And then there's just me going to the beach in a bikini last week. Though, I am very happy to report that I only got a mild sunburn on the back of my knee. I may not make the most practical clothing choices for a person with albinism, but I am very diligent about my sunscreen.
Now that we've gone over Albinism 101, I wanted to address some things that make albinism uniquely challenging. In the first episode, the Art of the Blind Joke, I talked about how I used to be very insecure about my blindness and how I used humor as a means to overcome that. But with albinism, you're not only dealing with the visual impact. You're also dealing with the fact that you look drastically different than your family and friends. This can be especially challenging for people in communities of color, because with albinism they'll have really pale skin, so they'll look white, but they'll still have the facial features of whatever ethnic group their parents are from. Obviously, as a white girl, I can't really speak to that experience, but I just wanted to bring it up as something that happens.
Throughout my life. I have received several random and uncalled for comments about my appearance. They're usually not intentionally harmful, but hearing a lot of comments about your appearance can be extremely exhausting. Some instances I can think of where I was in line for laser tag of all things and a lady from across the line, like shouts at her daughter, “Oh, Hey look, there's an albino!” This has also happened a few times when I'm exercising outside or going for a walk, I'll have people come up to me and they'll say something along the lines of “you need to get more sun.” There's also a good bit of exotification that goes on with albinism people coming up to you, wanting to touch your hair, basically treating you like you're from another planet. It's very strange because they're trying to be nice and say that they like your hair, but at the same time, they're treating you as though you're some kind of alien they're like, “were you born with that? I've never seen anyone with hair like that before,” and it makes it, it can be very exhausting.
On top of all of this people often don't understand that the physical appearance, light sensitivity, and visual impairment are all connected. So it can definitely lead to some awkward encounters and conversations. Another challenge specific to albinism is poor media representation because albino characters or characters with albino traits, think red eyes, pale skin, white hair, you get the gist are often portrayed as freakish or villainous. One example is The Greatest Showman where they had albino twins and they weren't actually played by albino actresses. Okay. I can't speak too much to their portrayal because I've never seen the full movie, but just the context of albino twins being in a circus, just because they're albino, makes me a little uncomfortable. I like to watch this reality TV show on TLC called OutDaughtered, which follows a family with all girl quintuplets. And one year for Halloween, they did The Greatest Showman where they had each of the kids dress up as a different character. And so one of the kids was an albino and during the show, they were like, oh, “Ava, say I'm an albino.” It's just very strange. Seeing people dress up as you.
Another example is Elsa from the movie Frozen because although her white hair and skin are explained by the ice powers in part, she definitely does look albino and I'm not going to lie. I've had a kid or two ask me in Disney world if I am Elsa. My hair now is pretty short, like above my shoulders. So I don't really get these comments anymore, but the last time I went to Disney, I still had long hair and a kid asked their mom on the bus if was Elsa, I mean, relative to other albino characters, Elsa is like pretty low on the spectrum in terms of poor media representation. But I still think it does in part contribute to the stereotype that people with albinism have magical powers.
There's also a very prevalent, evil albino stereotype that NOAH seeks to fight against. For example, they asked the directors of the 2003 movie, the DaVinci code to change the appearance of the character Silas who, I don't know if they said he had albinism or if he just really looked like he did, but basically he was an assassin and the villain in the movie. The idea is that the portrayal of characters with albinism only as villains or as malicious leads to the negative perception of just everyday people on the streets of albinism.
Finally, I wanted to touch on some of the persecution and discrimination people with albinism face. Particularly people with albinism in countries like Tanzania, Zimbabwe, and Kenya are hunted down for their body parts because they are believed to be good luck or have healing powers. On the other hand, people with albinism in several countries are also ostracized because interacting with them is believed to bring bad luck. In addition to the social stigmas, people with albinism in developing countries are more susceptible to skin cancer, especially if they don't have access to sunscreen and other protective gear.
I don't want to speak about this too much because I'm definitely not the expert here. And I can't speak to someone's experiences if they live outside of the United States. But if you want to learn more about this, nonprofits like NOAH or Under the Same Sun are great places to get more information and possibly donate. Most of my pigmented friends had no idea this was going on until I told them. And I didn't even know about this until a few years ago, but one of my goals on this podcast is to share my own experiences and also keep in mind the ways in which I'm privileged and ways in which other people's experiences are going to differ from mine.
I did, however, want to read two quotes from an article that I was reading while researching for this episode, it was from the conversation and it was interviewing students in a South African university that had albinism about what their life and social interactions were like. The first one is “honestly, I think albinism is a curse because people always stare at me and talk about me behind my back and also make very nasty remarks saying that my father is not black, but a white person. And that is why I look the way I do." And the other one is “last year when I was pregnant, I was told that I must not look at albinos because if I do, I will have a child with albinism. Or if I look at them by mistake, I should spit at them to avoid a child with albinism.”
All of these barriers emerged from the fact that albinism and the physical traits associated with it are often perceived as supernatural, odd, or undesirable. The main question I wanted to address in today's episode is how I learn—honestly, I'm still in the process of—accepting my physical appearance when, whether it be through movies, TV shows, or passive-aggressive remarks made by strangers. I'm being told that I look weird or like a ghost or a.
Honestly, though, I don't even really mind the vampire comparison because I think it's very fitting for my personality. I hate the sun and I feel like I would still hate the sun even if I didn't have albinism. My dad will often make jokes along the lines of, oh, it's not vampire weather when I want to go for a walk and it's really hot or something like that. So vampire is in part, a term of endearment for me, but when random strangers say it, I don't appreciate it.
A lot of you have probably heard about the body positivity movement, but in fact, most of the messaging never really resonated with me. I was at a place, especially during middle school and as I was going through puberty, where I was very insecure about things ranging from my height, my weight, but a lot of my insecurities did surround my albinism. And I've found that it was very challenging for me to go from a position where I was very critical of my body to loving myself. It felt almost like too drastic of a transition and saying some of those mantras to myself, like I'm beautiful. Albinism is beautiful. It almost had a backfire effect because I didn't believe what I was saying. And when other people would say it to me, it would draw more attention to my physical appearance and cause me to be more critical of it because I was thinking about it.
The other problem with the body positivity movement is that oftentimes especially in commercial campaigns, our bodies aren't represented. So you almost feel left out in a sense. And finally, the increased emphasis on body positivity can make you feel guilty if you aren't in a place yet where you can accept yourself.
My first suggestion for anyone that's struggling with physical insecurities is to embrace body neutrality, which deemphasizes physical attractiveness and pushes back against the notion that beauty is essential or an indicator of worth. It starts with saying mantras. Like “how I feel about myself has nothing to do with my appearance.” It's a great first step because it encourages you to focus on what your body allows you to do rather than how it appears. For example, if I'm feeling insecure about how pale I am compared to everyone else at the beach, I like to remind myself that my body is what allows me to go to the beach in the first place and experience all of the sights, sounds and smells associated with it. What's important is accepting my physical limitations, like my low vision or the fact that I'll have to put on sunscreen more often, but at the same time being grateful for what my body allows me to do.
What I especially appreciate about this movement is that it acknowledges that it's very hard to love your body. And you're not always going to feel great every day when you wake up, I think body positivity can be especially challenging for people with albinism because your appearance isn't considered the norm and people often make comments about it. Even if they're nice comments, there's still an increased emphasis on your appearance. For me, at least, embracing body neutrality was very helpful because it allowed me to get to a place where I accepted my body. And I understood that people may make comments about it, but that isn't an indicator of my worth.
Once I got to a place where I could accept my body, the way it was, I then began to look for clothing, makeup, and hairstyles that made me feel more confident. It may seem extremely superficial and it is to some extent, but finding a style that makes you feel good and express yourself can really brighten your day. I was notorious for overdressing in high school because I love to wear sun dresses, heeled boots, wedges, sandals, rings, lipstick, all of that, just to school. When other people would wear something like a hoodie. Virtual school kind of ruined it for me, but when I go back to campus, I will definitely resume the dressing up trend. One common misconception about it that bothered me was when people would assume I was dressing that way to impress other people or to look cute. But in reality, putting on a dress and wearing happy colors with frills and ruffles, it just made me feel more energized and happy. It made me feel ready to take on the day. And if you don't feel that way in dresses, that's totally okay. My point here is that you should try to find clothing and any other kinds of accessories that make you feel good.
This was especially helpful for things like hats or sunglasses because I most definitely needed them. But I hated wearing hats when I was little, I used to have this pink sparkly, silver sparkly, Paige boy, which is basically like a baseball hat with a wider brim. And I loved it. It was iconic. Everyone in my elementary school knew me by the hat. In middle school and the beginning of high school, I hated it. I didn't want to be seen in any kind of hat and looking back, it definitely does sound a little vain and honestly stupid because there are times when I could barely see and a hat would have been very helpful, but I want to talk about these things because these are real feelings that people have albinism. Anyways, finding the fedoras and cute beach chats made me feel a lot more confident because it shifted viewing things that I needed to thrive and navigate outside from a burden to something that I could be proud of, that I could feel confident in.
And finally, the largest change that has helped me accept my albinism, was starting to call myself albino. I feel like this is the hardest point to articulate because person-first versus identity-first language is often a contentious topic within the disability community. Especially within the albinism community, a lot of organizations like NOAH, for example, choose to use people with albinism or PWA instead of albino, a lot of people have experienced bullying or call-outs where people will shout at them. “Oh, Hey look, there's the albino.” As a result for a lot of people, the term brings up some negative memories and they don't prefer to use it.
But for me, choosing to start calling myself albino represented a larger shift from viewing albinism as something that afflicted me like a disease to something that's a part of my identity, a part of who I am, and something that shapes my experiences. I wanted to make it clear. I feel like I say this 10,000 times during this podcast, but this is just my opinion. I feel reluctant almost to call myself albino with people who don't really know about albinism that much because I don't want to give them the impression that that's what everyone likes to be called. And I most certainly don't think you should use the term unless you really know somebody well and you know that that's how they prefer to be addressed when you're talking about it. What I want to emphasize is that the word has a lot of significance for people with albinism, and it shouldn't be something thrown around without any caution.
Now that I've told you all of the reasons why people generally don't like being called albino, you may be thinking “Marissa, why call yourself that?a” Firstly, person-first language has always made me a bit uncomfortable. And I didn't think I possessed the language to explain why until a year or two ago, but I feel that when people use it, it almost alludes to a certain level of discomfort with albinism. More often than not people who use person-first language don't have a disability. And when I think in large part, they do it to try and be respectful. I think there are instances where it's a way to gloss over it or to separate it from the person. I often sometimes felt like this backfire effect. Like I know it's supposed to emphasize that you're a person, right?cAnd that your albinism doesn't define you, but there would be times where I'd think to myself, why do I have to be constantly reminded that I'm a person? Is there something about albinism that inherently is bad or that I need to separate from myself that I need to hide, that people need to be reminded that I'm a person? One can make the argument that I overthink it a little bit. And I probably do. I, I'm not implying that people who say the term person with albinism is intending to give it a negative connotation or to hide it. I'm not saying that at all. I'm just saying, this is why the language has made me personally uncomfortable.
Anyways, at a time when I was starting to think about how my blindness and my albinism related to my identity and my experiences, I had begun to start calling myself albino because, well, honestly, at first it was more of a defense mechanism, similar to how with some of the blind jokes, I would say them as a way so that people couldn't have that sort of power over me. But over time it became a way of expressing that this is a part of my identity. This is a part of who I am. There's nothing wrong with that. I feel like there's so much emphasis on, “oh, your disability doesn’t define you.” I'm not implying that it does. But I am acknowledging that it is a major part of who I am. It has shaped my personality, my experiences, and the people I have met. And Hey, I'm proud of that.
This may seem insignificant, but for at least four years, at least throughout the entirety of high school, I had “your favorite albino” as my Instagram bio. And it's nothing like having a whole podcast about it, but at the time I had never spoken about albinism or my low vision on social media. I almost felt like I could hide it on the platform because no one had to see me looking really close at my phone or trying to read something far away. So changing the bio for me was pretty significant because it was acknowledging, “Hey. I'm albino. It's not something I have to hide. It's a part of who I am. “
My point here is to not try to convince every single person to start using albino instead of PWA or people with albinism. Rather, I want to highlight how the change in language personally helped me accept my albinism. I think this change in mindset can happen regardless of how you choose to refer to yourself. But for me, calling myself albino helped me embrace who I am.
And that is all I have for today, everyone. Thank you so much for listening. I apologize for any sparse updates, like I said, moving in and adjusting has been, it's been wonderful. I love being in the city and getting to see so many new things, but it is rather hectic. One of the strangest things about recording in a dorm that I haven't already addressed is the fact that I can't stand the idea of people hearing me while I'm recording. I always record my podcast when my family isn't around. Not only just so I have peace and quiet. But also so that they don't hear me talking to myself. I wonder if my roommates or my neighbor mates are thinking, “is she just like having a full-out phone conversation or is she talking to herself? Is she talking to her stuffed animals?” I don't know.
But once again, thank you for listening. I'm hoping for international albinism awareness day to post some resources in my link tree, which you can find on my Instagram bio and my Facebook bio. I'll also post some links to information and resources in my social media posts for this episode. I am not claiming to be the expert on albinism. I've had it for 18 years, but everyone’s experience is different and it's really important to learn about how albinism impacts different communities.
If you liked listening, make sure to follow Legally Blonde & Blind on Spotify, Apple Podcasts, or wherever you get your podcasts. Make sure to also stay updated on my social media pages on my Instagram, @legallybb_, and my Facebook page. Thank you all for listening. And I hope to see you soon!