Beyond Being Seen: Inside Alaina Nwosa’s World

Content creator, model, and future barrister: Alaina Nwosa’s journey navigating life with albinism

“I’m just a multi-faceted Black woman trying to do what a Black woman needs to do.”

When Alaina Nwosa speaks, there is a quiet confidence that belies the complexity of her journey. Growing up in Hertfordshire as one of the few Black girls in her school and the only Black girl with albinism, Nwosa did not have a blueprint for the life she is currently building. Raised as an only child, Nwosa credits her parents with nurturing the confidence she carries today. “My parents were just like, you know, you're just a normal child, enjoy yourself, do whatever you want to do. That really helped in terms of my confidence when I was younger, and having that kind of mentality in life,” Nwosa says.

That confidence is evident today. Nwosa now has a growing social media presence, has walked at London Fashion Week and appeared in Vogue. But visibility, she suggests, is not always the same as understanding: “There is still a lot of ignorance about albinism.”

Understanding Albinism

According to the Albinism Fellowship in the UK, albinism is estimated to affect around 1 in 17,000 people. As stated by the NHS, it is a lifelong genetic condition that impacts melanin production, often resulting in very light hair and skin, alongside visual impairments such as light sensitivity, low vision and nystagmus, a condition that causes involuntary eye movements. While its physical characteristics are visible, the social realities of living with albinism remain widely misunderstood.

The Wider World and Relationships

That sense of misunderstanding is something Nwosa has navigated from a young age. As she got older, particularly in secondary school, navigating social dynamics became more complex and at times, uncomfortable. “I’ve always been aware that I was different, but I think when I went into secondary school, that’s kind of when it became blatant,” she says.

As social awareness intensified, so did the pressure of standing out. What began as a general sense of difference became something harder to ignore. “You get put into this weird situation where guys will be like, oh we have a crush on you, and obviously, it’s just a set up to humiliate you.”

At the time, she says she knew how she wanted to be treated. But even with this strong sense of self, she describes that “as I kind of grew older, I realised that I didn't necessarily deal with it. I think that whole situation really had an impact in terms of my day to day life too”. Those experiences have continued to shape the way she approaches relationships now: “When a guy expresses interest, I’m just kind of like, okay, is it genuine?”

Nwosa highlights another layer to dating as a Black woman with albinism. You have the “fetishisation of being a Black woman, and then on top of that, the fetishisation of having albinism, and that is a very, very difficult position to be in.”

Nwosa explains that these experiences can blur the line between genuine connection and objectification. “When you have a visible difference, you kind of become like social currency. So somebody would want to just be seen with you, because you're different, and that elevates the way that people see them.”

Between Two Realities

Alongside this, Nwosa is also aware of how her identity is shaped by colourism and the ways in which she is treated differently from other Black women in her community. “My friendship group is predominantly Black and predominantly Nigerian,” she says. “I have realised that the way that I'm treated in comparison to them based off of skin colour is completely different.”

In social settings, she often finds herself in a position where she is able to challenge behaviour that her friends may feel unable to. “I’ve kind of had to use that to defend my friends,” she explains. “I cannot stand it when there is an injustice.”

Her experiences reveal the complicated ways colourism shapes social interactions. While Nwosa experiences misunderstanding because of her albinism, she is also aware that her lighter skin can afford her a level of privilege that darker-skinned Black women around her may not experience.

More Than the Algorithm

Rather than allowing other people’s perceptions to define her, Nwosa has taken control of her own narrative. In 2023, she began posting on TikTok, initially without a clear intention or expectation of becoming a role model. “I sat down one day, I made a video, and that just went completely viral.”

What followed was an influx of responses that revealed just how much misinformation still exists. “There are still so many things that I could educate people on in terms of the condition,” she says. “I think that's why I progressed forward with my TikTok, to spread awareness, because there is so much misinformation, due to how the media represents albinism.”

Her content quickly resonated beyond her immediate audience. “So many different people from different cultures wanted more education,” she explains.

Since then, her platform has grown into a space not just for awareness, but for connection. People with albinism across the world have connected with her experiences, forming communities that extend beyond the screen. “There's so many different group chats that have stemmed from this as well…it’s been very, very rewarding. And I like the fact that there's now this kind of united community.”

Nwosa's experience on TikTok has not only helped many people across the world with albinism, she has also found comfort in it herself. “It's well and good speaking to your friends, but they can only understand it to a certain point,” she says.

Inclusion Is Not Always As It Seems

While social media has allowed Nwosa to take control of her narrative, her experiences within the modelling industry reveal a more complicated reality. Despite walking London Fashion Week and appearing in Vogue, she describes her overall experience as “quite negative”. For Nwosa, the issue lies in how inclusion is often approached. “It can feel like they are ticking a box,” she says, reflecting on moments where her presence felt more symbolic than authentic.

This sense of tokenism extends beyond casting. On set, a lack of understanding around albinism can impact even the most basic aspects of the process, from makeup artists unfamiliar with how to work with her features to environments that fail to account for visual sensitivity.

Nwosa has nystagmus, an eye condition which, according to the NHS, causes rapid, involuntary eye movements. In practice, this means that working under bright studio lights can be physically demanding. “It's really important when you are in an environment where there's a lot of bright lights, to have that time to rest your eyes,” she explains. However, this is something she has found is not always taken into consideration.

Makeup presents another challenge. “They haven't really taken the time to understand how to do makeup for people with albinism because it is completely different,” she says. “You need to put the colour back into the face, because you're going to look very one-dimensional.” These insights are not always received openly. Nwosa recalls being met with resistance from makeup artists saying, “Well, I've been doing this for years. I know what I'm talking about.”

The gap between representation and real inclusion becomes clear in these moments. For Nwosa, meaningful inclusion goes beyond visibility. It requires awareness, adaptability, and a willingness to listen, something she feels is often missing. “We are in this kind of weird situation where a lot of people want representation, but they're not doing it properly,” she says. “It's all well and good having a model with albinism in your shoot, but then behind that, have you actually done things which accommodate for them?” Instead, she describes the industry as operating within a framework of “performative inclusion as opposed to authentic inclusion.”

More Than What You See

“I used to wish I was normal,” she admits. “But I realised I can’t fight against it.” That shift from resistance to acceptance is something Nwosa now shares openly with younger girls who look to her for guidance. “You have to stop wishing you were different and just blossom into that confidence.”

It’s advice that resonates beyond albinism. In many ways, her journey reflects a broader experience of coming into yourself, unlearning external narratives and choosing how to define your own identity.

Today, Nwosa is balancing multiple ambitions. With a law degree and a master's under her belt, she has aspirations of becoming a barrister. She also hopes to take content creation full-time, carving out space for greater representation for people with albinism in the UK. “In the US, there are so many creators with albinism doing well,” she says. “I want to be that person here.”

But beyond representation and visibility, her message remains grounded in something far simpler. “At the core of it, we’re just human.”