top of page

31. Albinism is not an Accessory




Show Notes


We’ve all heard the phrase “albinism is beautiful,” and over the last decade, albino models, influencers, and advocates have taken the world by storm. But albinism representation—especially in the fashion and beauty industry—is far from perfect. In the thirtieth episode of Legally Blonde & Blind, I discuss society's evolving attitudes towards beauty and how we can more meaningfully include, uplift, and celebrate those with albinism. Tune in to learn how for me, albinism is far more than pretty white hair..it’s a community, source of pride, and part of who I am. 


Resources:


Transcript


A few months ago, Smalls and I made our runway debut. We were invited to speak and model at the Guide Dog Foundation's Dogs on the Catwalk event. We were both adorned in dresses designed by Anthony Rubio. I had–well, I think it was supposed to be a cocktail dress on a model that's 5 '11–but seeing as I'm 5' 2, it was more like a maxi dress. I was wearing a blue sequin maxi dress and Smalls got her own customized silver sequin dress with pink ruffles. She absolutely hated it, but looked adorable. It was so cool being able to strut my stuff, especially with my guide dog by my side. But one thing I did notice is that I was the only amateur model at the event. There were about 10 or so professional models who also volunteered at the event, and when I was standing backstage with them, I couldn't help but notice how different I looked. They were all tall, thin, tan, and didn't have guide dogs. Admittedly, it made me a little nervous to go down the runway, but when I saw people cheering for us as we were walking down the stage, It made me think about albinism and media representation in general. Thinking about how powerful it is to see models who look like you, who aren't “perfect.” So today, I wanted to have an honest conversation about fashion, beauty, and media representation, and share why I think albinism is so much more than an accessory.


Intro Music


Hello, everyone. Welcome back to another episode of Legally Blonde & Blind. I hope you all are doing well. We are currently experiencing a bit of a cold snap in Washington, D. C. And this is the first time that Smalls has ever really been In snow. Now, she has seen a few flurries before. We went to Boston around this time last year for the Together Achieving Dreams Gala, which, if you recall, the founder of that organization, Kathryn Webster, was on the podcast about a year ago. But we didn't really see that much active snow that was sticking on the ground. So this is Small's first time really working in a snowstorm. And it's really cool to see how attuned she is to the environment and how hard she works to keep me safe. She's even started guiding me around ice, which I can't see for the life of me. And if she can't get me around it, she'll either stop in front of the patch or walk significantly slower. You may be wondering where she learned this and it wasn't from guide dog school…It was from me slipping in the ice a week ago, but now we know.

Anyways, this episode is going to be a bit strange because unlike most Legally Blonde & Blind episodes, we won't be talking all that much about vision. Instead, we're going to focus on the physical effects of albinism: white hair, pale skin, blue eyes, and how that impacts the way we're viewed in our communities. One of the most unique parts about living with albinism is that in most cases, it not only affects our eyes, but our whole body. It drastically changes the way that we look. And a lot of people view those two things as separate. I've encountered many people in the public that don't realize that the reason I'm blind and have a guide dog is the same reason I have really white hair. And I've noticed this sort of separation in the albinism community as well. At least in the U.S., what I've noticed is that people, especially parents, view the white hair and pale skin as unique, angelic, beautiful, and they celebrate that. But the low vision that comes along with it is largely something that's negative. Something that makes your life worse, something that should ultimately be corrected.


So today, I'd like to talk about media representation, but solely with albinism, not blindness. I'd love to make an episode one day about blind characters, including my all time favorite Toph Beifong, but that will have to wait for another day. Additionally, I mainly want to talk about fashion, beauty, and modeling. There is a lot to be said about the depiction of albino or albino looking characters in movies, books, and TV shows, but today I mostly want to talk about beauty. I want to start by quickly discussing how albino people historically have been treated and represented in the media. And to be clear, I'm mostly talking about the U.S. Obviously, albino people exist all over the world, but I think for the scope of this podcast episode, it makes the most sense for me to talk about the U. S., where I could find the most information, and, of course, where I have some lived experience. I think as someone growing up in the 21st century, It is very easy to forget that albino people existed before the dawn of Facebook and NOAH, and that even if they weren't in your high school textbooks, they were a part of history. And they were represented in the media, albeit in a, as we'll get to, a very negative and objectifying way, but they were there. They are in photographs, medical journals, magazines, newspapers, advertisements, all throughout history. 


For instance, throughout the 19th century, many albino people, especially those of African descent, were displayed in museums, freak shows, and circuses. I had never heard about this growing up. And the only reason I found out was because a few years ago, I started reading a book called Medical Apartheid that talked about racism in the healthcare industry, and believe me, I was not expecting to hear anything about albinism in this book. But they were talking in one chapter about how when physicians discovered black patients with albinism or any other kind of hypopigmentation, they would often write about them in medical journals, display them in hospitals, and even take them on the road, offering people a chance to see them and touch them for money. I also found this fascinating article in the Washingtonian about how these two albino brothers named George and Willis were kidnapped from a tobacco farm in the early 1900s and forced to work in a traveling circus. They weren't allowed to go to school. They weren't allowed to read. They weren't paid for their work and to stop them from begging to go home, they told them that their mother was dead. They were eventually reunited with their mother, but they had to go through decades of legal battles to be compensated for their labor. I can't possibly do this story justice, so I highly recommend checking out the article, which I will link in the resources page below. But what I found the most interesting is that there were several pictures of George and Willis in advertisements for the circus. They were marketed as “Ambassadors from Mars” and “sheep-headed” men. They were touted as the circus's original “monkey men.”


The reason I bring this up is because we don't live in a vacuum. On one hand, the way that albinism was represented historically influences how we see it today. Take for example, the Greatest Showman, a 2017 movie where they have an albino character–who isn't played by an actual person with albinism–as a part of the circus. Like where do you think they got the idea that albino people should be parts of freak shows? Also, if you look at a lot of current medical journals and articles, the pictures that they use of albino people. are very reminiscent of those from the early 19th and 20th century. The founder of Positive Exposure, who I will talk about a little later, brought this up in his TED Talk, and he showed a lot of pictures that just looked sad. That's the best way to describe it. There are these kids or adults standing in front of a blank background. Usually they're naked. They have their eyes blanked out, they're never smiling. And if that's what medical providers see when they first learn about albinism, what assumptions are they going to make about the lives we live?


The other point that I wanted to make when saying that we don't live in a vacuum is that albinism does not exist in isolation. The way that people experience this condition is heavily influenced by their other identities, most relevant in this discussion being race and gender. So, I strongly encourage you not only to listen to this podcast episode, but to seek out other creators and their perspectives, because I am only one person, and I'm a white person. So, there's some things that I really can't speak to. But I will say that any time people without albinism are using albino models in media or artwork, they should seriously consider whether they are empowering or exploiting them. Regardless of their intentions, I think creators should ask themselves, “Am I overemphasizing this model's, quote unquote, exotic or unusual features because they're albino?


Am I glorifying their albinism because I view whiteness–the light skin, blonde hair, blue eyes–as the standard of beauty?” As the title of my episode suggests, albinism is not an accessory. It is so much more than something pretty you put on a magazine. It is an identity, a community. And as such, I think it's very important that we are intentional with how we represent it in fashion and beauty. And looking at how albinism was represented in the past gives us a pretty good blueprint of what not to do. 


Thankfully, things are much better today. There are tons of albino models and influencers out there. I could not possibly list them all. And when they are featured in ad campaigns, magazines, YouTube videos, you name it, it's usually in a lot more of a positive light. One of my favorites is Thando Hapo. She is the first albino woman to ever be featured on the cover of Vogue magazine. She was on Vogue Portugal's magazine cover in 2019. And in an interview she gave, she was talking about how she always wished she could see somebody who looked like her on the cover of a magazine. I think there's this perception that wanting to be represented in fashion and beauty is shallow, that it should not matter if there's models that look like you because what's on the inside counts. But the truth is, what we see in magazines, on the runway, influences what we think of as beautiful and what we think of as normal. I think parents, especially those of young girls, are starting to realize how early we notice these things. I mean, I remember when I was a kid, I would look at the models in Abercrombie Fitch or Hollister. I noticed that they had tan skin, that they had a six pack, that you could see their ribs. Even before that, I noticed that when I was picking out my Truly Me American Girl doll that there weren't any dolls with pale skin or white hair. I'm still so mad about this. They have one with pink hair now, but they can't make one with albinism? Come on! And getting back to Thando's interview, she was talking about how she always wanted to see a model with albinism on the cover of Vogue and how empowering it was for her to be that person. She's just one of many albino models taking the world by storm. And I think it's really cool that kids growing up with albinism today get to see all of these people who look like them on the runway. 


But even beyond modeling, there are tons of influencers who are using social media and brand partnerships to normalize albinism, to show what our daily lives look like and what types of products we can use. One of my favorites is Oceanne. She's based in Canada and she does several Instagram reels about albinism and makeup. So for example, she'll try different light shade foundations to see what works best for her. She also tries out different color mascaras, which is so cool, I really want to get neon pink mascara now.

She's also done a lot of brand partnerships, I know she's worked with Aerie. She's also done collabs with a few different assistive technology companies. And what I think what's really powerful about social media is that it's more down to earth. We're not only seeing high fashion, highly edited photos of albino models, we're also seeing college students going about their day, trying different makeup products for fun. I know I said I was mostly going to focus on the U. S. in this episode, but I've also seen on Facebook albinism pageants popping up all over the world. For example, Mr. and Mrs. Albinism of East Africa. And I think that's such a cool way to take power back and to celebrate the beauty of albinism, especially in regions where it's heavily stigmatized.


In addition to seeing more albino influencers and models, we're also seeing more products that are intentionally designed for us. Take, for example, Jennifer Rhodes, who founded Ivoree Beauty, an online store that has blonde and white eyelashes, wigs, and other products specifically designed for people with albinism. There's also increased shade ranges in foundations and concealers with brands like Fenty Beauty, MAC, Dior. I can at least say anecdotally, I think it has been a lot easier to find foundation shades that work for me in the last few years. I remember when I was Cruella DeVille in the fourth grade play, it was much harder to find a foundation that worked for me. I distinctly remember being in Ulta with my mom, and she had like, swatched Seven different foundation shades on my face. And she was getting all of these dirty looks from the other patrons because it looked like she was trying to put concealer on her young child. Two takeaways here. One, I can't believe we've never discussed my theater career on this podcast. it's definitely something. And two, the shopping experience has gotten much better as shade ranges, both on the lighter and also the darker end, have increased. 


But things are far from perfect. I think one of the biggest problems is that even when people with albinism are featured in runway shows and magazines, there's still this overwhelming perception that we're not normal, that these companies are doing something special by including us. And I think that's because we still aren't seen as conventionally attractive. We're not what people picture when they think of a model. And it's really challenging to completely upend an entire society's standard of beauty, right? I don't think any one magazine or company can do that, but it's still a hard pill to swallow. Not only for regular old albinos like me, but also the models themselves. I was watching an interview and I came across one really heartbreaking quote that read, “I've learned that with beauty, I've got to define it myself. If I were to go with the world's view of what beauty is, I would be very miserable,” and I think that's true.


On a similar note, when we do get complimented, sometimes it's about how rare, unique, or exotic we look. I was researching different albino models and influencers for this episode. And I found some articles and videos with some interesting titles, like “Albino People Who Will Mesmerize You With Their Otherworldly Beauty” or “The Hypnotizing Beauty of Albino People.” And while I think the intention behind these compliments is positive, sometimes they leave you feeling like an alien. A pretty alien, but an alien nonetheless. And I think I can speak for most albino people when I say, we don't want to be a spectacle. 


Now the main reason I made today's episode is because I think there's things that we can do as a community to push for better albinism representation in the beauty industry. And I think shifting the way that we talk about albinism and beauty, not only in magazines or interviews, but also even on Facebook or amongst family and friends, can truly help more people feel beautiful. The first point I want to make, which I've already addressed in this episode, is that albinism is not the only form of representation that matters. Seeing a model with a similar skin tone is not going to automatically erase people's insecurities about their body, especially if those models are young, tall, thin, cisgender, and otherwise conventionally attractive. There's times that I've seen pictures of other albino people and have thought to myself, “Well, they're beautiful, they're models, but I'm not like that, I'm too short, I'm too fat, my hair's too yellow, my eyes aren't blue enough.” I think the key takeaway here is that giving a select few models with albinism a photoshoot, the cover of a magazine, the spotlight, isn't going to automatically make all of us feel seen. And of course, I do understand that with studio lighting, photoshop, and professional cameras that people with albinism who are in these editorial shoots are not going to look like most of us throughout our daily life. And I think that is something everyone, not just people with albinism, have to remind themselves when looking at pictures of models. But I do believe that it is so important to make sure that we are representing different ages, body types, genders, races. when we are doing photoshoots, especially those that are intended to highlight the beauty of albinism. I also don't want to take away from how individually empowering being the center of attention in a photoshoot could be for someone with albinism. I know that one of the goals of Positive Exposure, for example, is to take pictures, glam up everyday people with albinism, and that sounds like such a cool experience, but unfortunately for the vast majority of us, that isn't really affordable or accessible.


That leads me to my next point. I don't just want to see pictures of albino models on International Albinism Awareness Day or some other “special” feature. I want albinism representation to be normalized. I was watching a lot of interviews with albino models for this episode. And a lot of them expressed a similar sentiment that they don't want to be seen as a trend. Human bodies shouldn't be something that fades in and out of style. One in particular said that she didn't just want to be known as “the albino model,” and I totally get that. I want to see albino models in New York Fashion Week, and on the cover of magazines, and pieces that don't revolve around albinism. I want to see it in commercials. And ophthalmology commercials do not count. When I shop online, I want to see models with albinism wearing the clothes or the makeup products that I'm looking at. To be totally honest, I'm not quite sure how we can get the powers that be to include more models with albinism in their advertisements. But I do definitely think we are seeing a trend where people are shopping at more size inclusive and diverse brands. Think of how Aerie and Fenty Beauty are a lot more successful now than Victoria's Secret, because people like to buy from size inclusive brands that have models that look like them, that aren't just Victoria's Secret angels. Obviously, albinism is a rare condition, and we have a very small population, an even smaller subset of models, so I wouldn't expect to see albinism in every single publication or advertisement, not at all. But I would like to see it occasionally and have it be something that isn't unusual that doesn't make a huge deal out of our white hair and our pale skin. That just depicts us existing. 


My next suggestion is a lot more down to earth, but if someone with albinism ever shares their insecurities with you, if they ever tell you that they think they look weird or ugly, do not say things like, “Oh, beauty is relative. It's what's on the inside that counts” or “Yes, you have albinism, BUT…” You may have positive intentions by saying those things, but it is the last thing that someone wants to hear if they're feeling insecure about their body. It feels like you're dodging the question or admitting that yes, they do look weird or ugly, but that it doesn't really matter. 


Yes, your personality is far more important than your outward appearance, but there's nothing wrong with wanting to feel beautiful. It's not vain or shallow. So instead of shutting them down or saying that what's on the inside counts, I think just acknowledging their feelings is what really matters here. Acknowledging how frustrating and lonely it can be to be in a world where there's not that many people who look like you, especially people like models and influencers who society regards as beautiful. I have another podcast episode titled “White Hair, Don't Care” that goes more into the personal elements of body acceptance and positivity, but I think Increasing albinism representation in the fashion and beauty industry, not as a one off feature, but as a normal and beautiful part of human diversity, can help alleviate these feelings of isolation, the feeling of sticking out like a sore thumb with your white hair and pale skin. 


Overall, I think the key takeaway here is that we should celebrate the beauty of albinism without treating it like an accessory. It is not a trend. It is not a fashion statement. It is a fundamental part of who we are, and it should be celebrated as one of the many things that makes us beautiful and unique.


Thank you all for listening to today's episode. I hope you enjoyed it and learned something new. I've wanted to talk about this for quite a while because I think it's interesting how far we have come even in the last 10 years regarding albinism representation, especially on social media, but things are still far from perfect. I hope the distinction here is pretty clear between celebrating someone as beautiful for who they are, and treating them like an exotic object or an alien, something that is unique and trendy. As always, I would love to hear other people's perspectives, especially those who do work as models, because I don't know what it's like to be in front of the camera. I would love to hear your story. 


Anyways, if you enjoyed today's episode, make sure to subscribe to Legally Blonde & Blind on Spotify, Apple Podcasts, YouTube, and anywhere else you get your shows. You can also stay up to date by following our social media–not our, I always used to say that, my social media I guess it's our now because of smalls–but MY social media pages at Legally Blonde Blind on Instagram, Twitter, which I guess is now X, Threads, Facebook, you name it.


You can also stay up to date by looking at my website. LegallyBlondeBlind. com. Thank you all for listening, and I hope to see you soon.

Comments


bottom of page