“I am Oceanne. I'm 23. I'm from Ontario, Canada, and I have albinism. I’ve had it since I was born, and I honestly never thought that I would be posting on Instagram about albinism or anything like that. It kind of fell into my lap one day. Some of my friends had questions, but for many years, never asked me. However, when I brought up the topic, they asked me. So, I asked them, “Why have you been holding back? Why didn’t you ask me these questions earlier? They said, “I don’t know. I just felt like it was uncomfortable to ask, and I didn’t really know if I could ask them.” That inspired me to answer the questions that people had, and as the pandemic started, I began posting on TikTok. A lot of people had questions about my albinism. So, I started answering the questions on TikTok by posting on albinism, and it just came to be what I did.”
Oceanne explains albinism to us.
“Albinism is a recessive, genetic condition. So, both of your parents need to have one copy of the albinism gene for you to have albinism. Both of my parents were carriers of albinism. More simply, they don’t have albinism, but they were both carriers of the gene. Therefore, they had a 25% chance of giving birth to a child with albinism. It just so happens that I was that 25%, and so was my sister. She also has albinism.”
“Albinism is a condition that affects the melanin production in your body. So, my body has very little melanin production. The lack of melanin contributes to blonde, white, or light-colored hair. It also contributes to light sensitivity of the eyes and skin. So, as a result, I don’t have any pigment in my hair, and my hair is white. I have pale skin, my eyes are sensitive to the sun, and my skin burns very very easily. Albinism also affects my vision in the sense that I am legally blind. I have foveal hypoplasia. This is where the back of the eye, the "fovea,"is underdeveloped. There is a lack of melanin, and as a result, my eyes can’t filter out light very well.”
Oceanne describes when she first acknowledged the human experience of her albinism and sight impairment.
“I was aware that I was different from a very young age. It was one of the things that people talked about, but I didn’t truly acknowledge the severity of it. When I was very young, I just saw the other kids, and I thought I was something special. I just thought that I was a princess or a mermaid or something. I thought, “I’m different than everyone else,” but I didn’t grasp the social implications of that until later. Later on, I would have to grasp the fact that disability is lifelong, and it has an impact. Gradually, I started to realize how different I was from my peers in middle school.”
“I remember exactly the moment I realized this. When I was in the 7th grade, we all got taken somewhere on a field trip. All of these other schools were there. The kids from the other schools were not used to seeing me with my white hair, white eyelashes, and super pale skin. So, all of these kids came up and started asking me questions, and some of them were very rude. Then, they started calling me names like “ghost,” “pale girl,” and all of these rude things that I just wasn’t used to being called.”
“I had been around my peers my entire life, but now that I was meeting people outside of my world, I was treated differently. I didn’t understand why, and that was the first moment that I realized, “Okay, there’s something different here.” That experience deeply changed things for me. I went into high school feeling really nervous and very shy because of this experience. I was in a bigger school with all of these kids, and I knew nobody, but everybody knew me because I look very unique. So, everybody was talking about me, and they knew my name, but I didn’t know anyone. I felt a little shy, nervous, and cautious. I had to carry that attitude with me throughout high school and the rest of my teen years. I can remember when I turned 16, and all of my peers were learning to drive and live independent lives. All the while, I was told, “You’re not able to drive. You're legally blind. You’re not able to drive. There’s no way.”
“That made me feel even more different from my peers, and I began to completely realize how much this made an impact on my life. It led me into a depression, and I didn’t know how to cope with it at the time.”
However, Oceanne conveys how in reality, disability is not so atypical.
“I tell everyone that we’re all going to be affected by disability at one point in our lives. And when I say that, it definitely shocks everyone because no one thinks about it. People who don’t have a disability live their lives, but then eventually, we all get old. Old age does correlate with disability, and people don’t realize that at one point, they will have a disability and be impacted by it.
“Nevertheless, people close to me wanted to completely shelter me from the human reality of disability. They did not talk to me about the idea of being disabled. In their mind, they meant well. They wanted to surround me with the idea that “You’re not disabled. You can do everything the other kids can do.” Which yes… is true. Anyone with a disability can do anything that other people can do; they just do it differently. So, yes, that is true, and I respect that they wanted to instill that within me, but being sheltered from my disability gave me less understanding of it. I wish that I had been more connected to my community early on. I would have been able to learn more life skills that help with living independently. But, on the other hand, I don’t think that I was emotionally ready to accept my disability either. I don’t think that I would have been able to accept that training on how to live independently. So, for me, independence came all at once with adulthood.”
“I moved out at 18. I felt as if I had no choice but to move out at 18. I come from a smaller town. It’s not super small, but it's very remote. It’s in the north of Canada, Northern Ontario to be exact. It’s very remote, and everything is so far apart. Like, it's a half-hour drive from my parents' house to the mall. Everything is far apart, and the public transit was abysmal. Going to University on the bus would take an hour. So, I wanted to live in a big city where I could have access to transportation, live independently, and have different experiences. That’s why it was necessary for me to move out at 18.”
“But, as soon as I did, a multitude of barriers were suddenly in front of me. Like, how do get around town? How do I cross busy intersections and highways by myself without getting run over by a car? I didn’t know how to do that. Living in a small city, I had received very little training. So, it took a lot of time and a lot of learning. I had to reach out to my community to get that support and to truly learn how to live independently. I had to reach out to my community to surpass the idea of dependency associated with disability. People had pushed that on me, and I had even pushed it on myself. I turned to my community, and I looked for more people like me who I could look up to. Whether it was through social media, organizations, or face-to-face conversations, I was able to find my place there.”
“I’ve made my way, and today, I work in communications, and I’m a social media manager.”
On her journey, Oceanne tells us how she’s navigated some of the social barriers she’s faced.
I’ve definitely had my fair share of comments. People have been insensitive and have asked invasive questions. In response to these situations, I’m always thinking
“It’s not the right time.”
“It’s not the right place.”
Why are you asking me?”
“You can Google this.”
These exchanges are emotionally taxing, they are difficult, and they do take a mental toll on you. While it’s true that many people are just asking out of curiosity, there are still some who are completely insensitive about it. In that case, I give a firm response that sets boundaries. I will say something like, “Hey, I will answer your question, but that is not a term that we use” or “That’s not something that most people would be comfortable answering, but I will answer your question anyway.”
For me, I’m an open book. Even if it’s insensitive, I'll answer any question. However, I understand that people may not want to do so. However, you can answer questions while still setting boundaries. By responding like this, you answer their question. But, moving forwards, they’re aware of how you feel, and they're aware of the fact that it’s not an appropriate question to ask.
Despite people's perceptions, Oceanne continues to relay that she goes through many of the same things that others do.
“When I was 12, I had acne like many of my peers. However, it started to get bad, and I was super insecure about it. On pale skin, it shows up so easily. And on top of feeling insecure about the way I looked because of my albinism, I had bright red spots that were very visible. It got better over time, but I had to find products that worked for me and see dermatologists. When I had acne, I didn’t like situations where I knew people would look at me. But, what made it even worse was the way that the media talked about acne.”
“They made it seem like the worst thing in the world. It’s portrayed as so bad, unacceptable, and unappealing. When in reality, it’s something so normal and natural. It happens to everyone, but public perception greatly altered my reality. But, now that I’m older, I’ve embraced it. I don’t edit any of my photos, and breaking free from public perception has been so liberating.”
Before discovering this confidence, Oceanne tells us some of the things that she experienced with self-image and beauty.
“Makeup was a huge challenge. In middle school, everyone was starting to get into makeup. Everyone was wearing foundation, concealer, and mascara, and I deeply wanted to be a part of that. Then, it hit me - “You don’t have the same skin as everyone. You don’t have the same eyelash colors as everyone or eyebrow colors as everyone.” From there, I thought, “How am I going to do this?” I would watch the YouTube gurus like everyone else, but their looks were only kind of an option for me. I could buy the lip colors, but wearing mascara didn’t feel natural. Also, at the time, foundation shades had a very limited range. My experience with shade range doesn’t hold a candle to some other people’s experiences, but it was difficult knowing that they didn’t make anything that I could wear. It was difficult knowing that I wasn’t included.”
“I found my own way to do my makeup. I had to be super creative. I saw that there were these clear eyelash and eyebrow gels that had come out. So, I would use that to turn my eyelashes upwards and set my eyebrows in place. I would use blush, and I was really into lipsticks, lip gloss, and chapstick. Lipstick and gloss made me feel confident But now, shade ranges have increased, and I’ve found options. At 18, I was able to find the first foundation shade that matched me.”
From there, the world opened up to me, and I got my eyelashes and eyebrows tinted. When I first got it done, I thought it would change everything for me. I thought it would change my look and make me appear ”less albino.” But then, I realized that I can’t erase my albinism, and I can’t hide that part of me. I felt especially upset about that, but then I thought, “I can’t change the way I look. Tinted eyebrows and eyelashes can’t truly change my identity or how I feel about myself.” So, I started to embrace my natural look. Now, I go back and forth between having tinted eyelashes and eyebrows. It’s just something that I feel confident embracing. I don’t tint my eyebrows and my eyelashes to hide who I am; I just do it to leverage my look, and I do it because I want to.
Because of my experiences with beauty and self-image, I want to continue to educate and emphasize different aspects of beauty for people with disabilities, especially those who are legally blind and also people with albinism. Overall, I just want to create a safe space, a community, and share my everyday experiences.
@Oceannec_