THE ROWER by Standing Voice
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THE ROWER

Nic Cerulus

Standing Voice
By Standing Voice

In my family, I’m the only confirmed person with albinism.

My parents had to learn over time how to take care of a child with albinism. For the first five months of my life, I was completely blind and wouldn’t react to anything in front of me. My doctors didn’t notice or have an understanding either. But growing up, I was lucky. My parents pushed me to do everything my brothers did. Both of them enjoyed sports and I always felt, “if they’re doing it, I want to do it.” When we were younger, we played everything together like football, hockey and horse riding. The only difference was I had to wear a hat with a flap at the back and I had to keep applying suncream. 

For much of my childhood, we moved from place to place. I was born in the US and moved to Malaysia when I was two. Six years later, we moved to Holland. I finally moved to the UK to attend university to complete an undergraduate degree in Aerospace Engineering and now a PhD in Fluid Mechanics. Being in an international set-up and attending international schools, my peers and teachers were very understanding.

“Everyone was different in the school, with students coming from all over the world. It was such a melting pot that my albinism was just another difference."

At the start of each school year, I would always have a conversation with my teachers to explain my differences. For the most part, everyone was very accepting and would adapt their teaching to my needs but there were always some who found it confusing. One of my lecturers at university refused to adapt his teaching to accommodate me and attempted to fail me when I stopped attending his lectures. His lectures were difficult for me to follow as I would struggle to see the board. I would get so tired from trying to focus that I couldn’t take any information in. 

When I was young, I’d heard about the issue in Sub-Saharan Africa and the myths that exist around people with albinism having special powers. It first hit me, however, when I wasn't allowed on a school trip to Kenya when I was 15. The teachers didn’t let me go mainly because they weren’t sure of the situation in the country at that time. They were worried about my safety and the risk of my skin under the hot sun. As an adult I understand their reasons but at the time, I was frustrated. 

A photo in this story
A photo in this story
A photo in this story
A photo in this story

Throughout my life, I’ve had specialist opthalmologists in Singapore and Belgium who have followed my progress. In comparison, free tests I’ve done in the UK have had a lack of understanding about my vision and how to manage my prescriptions. Their priority was more to jump through hoops and get me in and out as quickly as possible. My eyesight also means I am not legally allowed to drive. When I finish my PhD, I had hoped to move back to the US but it’s the kind of country where you need to drive wherever you go. 

Rowing became a passion of mine during school following a suggestion from my mum. I wasn’t rowing at a very high standard until I came to university just as the rowing club was beginning to grow. Choosing rowing as my preferred sport was mainly centred around the fact I don’t need to see because I’m facing the wrong way! Once you get to know a river, you understand where everything is just by noticing large queues and landmarks.

After years of training, I was put forward for the trials to be in the Belgium paralympic squad. However, it turned out I wasn’t blind enough. I had the scores to be part of the paralympic set-up in terms of athletic performance. But when they did the testing for my eyes, you had to be 6 over 60 or below to be eligible. I was 6.1 over 60. So I was just outside the bounds. It was the only time I wished my eyes were a bit worse! 

“I think albinism is something that needs to be normalised. It’s not an illness, it’s just another difference between people.”

A photo in this story
A photo in this story

My rowing team is extremely accommodating of my needs. To the point where we can just laugh about it now and it's completely normalised. So when the first International Albinism Awareness Day was celebrated, I began to feel very lucky about the life I live. I don’t think many people have an understanding of what is going on in Sub-Saharan Africa when it comes to albinism. I decided to use June 13th to make some money for charities like Standing Voice and spend the day educating people. For one day, I wanted people to feel free to ask me any questions they wanted about my albinism with no judgement at all. I’ve raised money for Standing Voice for a few years now and I know it’s not a massive amount but every little helps. What I think is most important is raising awareness around the issue. 

This year, I want to bring all of the rowing clubs in the North West together to help partake in my challenge event. My idea consists of cycling between all of the clubs to connect everyone: around 213km in total but I’m considering making it slightly longer. I want it to be even more challenging than last year! 

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You can donate to Nic's fundraising event in aid of Standing Voice here:

https://www.justgiving.com/fundraising/iaad-2021


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