By: Ryann Lam and Nur Hanisah
A look into what it is like living with Albinism in Singapore.
As she walks down the street, she can hear whispers of the people around her calling her a ghost. She tries to hide her face with her vanilla coloured hair, nervously playing with its ends. She also tries to cover her ivory white skin with whatever clothing she had on. She lowered her light blue eyes to avoid making eye contact with anyone. This is Hillary Lee Yin’s story, a girl born with Albinism.
Hillary Lee is just a normal 19-year-old girl in Singapore, currently pursuing a diploma in Early Childhood at Ngee Ann Polytechnic. Hillary tells her struggles as a girl living with albinism in Singapore - which is often not talked about in mainstream media.
Photo Caption: Hillary, a 19 year-old girl born with albinism in Singapore
Source: Nur Hanisah
What is Albinism?
Albinism is a genetic condition that is inherited and requires a defective gene to be passed down by both parents. It reduces the production of melanin, the pigment that colours the skin, hair and eyes. With little to no melanin, people with Albinism usually have weak eyesight and are not able to stay under the sun for long periods of time as they are prone to sunburns and increase risk of skin cancer. According to the National Organization for Albinism and Hypopigmentation (NOAH), Albinism occurs in all racial and ethnic groups throughout the world. In the U.S., approximately one in 18,000 to 20,000 people have some type of albinism and in other parts of the world, the occurrence can be as high as one in 3,000.
Photo caption: Hillary’s eyes in the picture appear red because the flash from the camera, allowing the blood vessels at the back of the eye to be seen. Her eye colour is actually light blue.
Source: Hillary Lee Yin
Albinism has affected Hillary’s eyesight which resulted in her being short-sighted. This is because pigmentation in the eye is essential for normal vision. The National Health Service (NHS) UK stated, the reduced amount of melanin causes eye problems because melanin is involved in the development of the retina, the thin layer of cells at the back of the eye.
“I remember in kindergarten, my teacher would embarrass and scold me in front of the class because I couldn’t see the board and I didn’t know how to tell her about my condition,” she recounted. Things got better when she entered Primary school as the teacher was more aware of her condition and she received assistance such as having extra time during exams and enlarging the paper size to A3 so she could see better. Apart from that, she utilizes a tool called monoculars to aid her in seeing the whiteboard or screen during classes.
Photo Caption: A pair of monoculars that accompanies Hillary throughout her primary and secondary school years. Now that she is in Polytechnic where most of her work is done on a laptop, she rarely uses it.
Source: Hillary Lee Yin
More than just their physical appearance
Other than health complications, being an albino comes with a whole set of concerns. Because of this unique genetic mutation, albinos are often greeted with unkind words, discriminations and prejudice.
Albinos have to live in a constant state of fear just because albinism is viewed differently in Africa. Tanzania has the highest record number of attacks towards albinos as Tanzanians hunt albinos down for their body parts. They believe that albino’s body parts contain minerals that bring in wealth, luck and even sexual favours. Whereas in Zimbabwe, it is believed that there are evil spirits inhibiting people with albinism.
Photo Captions: Discrimination aganist albinism present in Africa.
Source:Economist.com
A non-confrontational society exists in Singapore and Hillary has her own set of struggles that she carries. As someone living with albinism in Singapore, it is normal to have numerous pairs of eyes on her all the time as she is out and about in her daily life.
Now, imagine running errands, going to school or even walking to the supermarket and you have eyes on you every single second. All the spotlight is on you, makes you feel like you are doing something wrong and that is exactly how Hillary felt. It may be a simple act of curiosity but you never know how much it affects them, especially for Hillary.
“I think most of the time in public, I would get stared a lot and usually hear a lot of remarks about my appearance. Some would say ‘ghost’ or some would usually point out my fair skin and hair.” Hillary mentions as she shares exactly how often she gets stares just from her physical appearance. Can you imagine how uncomfortable it gets?
Fitting In
“I think I remember one of my group of friends will leave me out because I can’t participate as much going out and they will make personal comments on my appearance even though they know it’ll hurt me,” she mumbled as tears began to slip down her cheeks retelling the incident.
We all need to be and feel accepted and included. People with albinism are at risk of isolation because they are often misunderstood and look different from those around them. In Hillary’s case, she did not isolate herself though she felt like she didn’t belong anywhere. She felt the strong urge to fit in even more, to fit into a group of people. She forced herself to please people. As she grew older, she purposely mixed with bad company knowing she did not enjoy it one bit. She even did things she didn’t like just so she could fit in somewhere.
“I wanted to be like everyone else.”
A beacon of Light
Life before church was mundane and Hillary focuses on nothing else but the negative side of her. She detests it the most when people pointed out how different she looked and was often left with anger and unhappiness in her. For the umpteenth time, she wished she looked “normal”.
Just as she felt it was pure darkness in her life, one of Hillary’s closest friends introduced her to a whole new community where she was able to truly find peace and accept who she is. “When I realised Hillary attends church, I thought it would be a great idea to invite her over to my church for her to experience what is the culture like” Janelle shared, not knowing that it was going to be the turning point in Hillary’s life.
Being introduced to a new community church, Hillary was able to experience how people treat her for who she is on the inside and not on the outside.
“When I attended church, I found a community that accepts me for who I truly am, they don’t look at the things I do or who I am, they just accept me for who I am.” Hillary sniffled. Through the actions of the community, she was able to gain confidence and slowly accepted how unique she is. Hillary learned to love how unique she looks.
In the present
As a student of Ngee Ann Polytechnic studying Early Childhood Education, Hillary is currently doing her attachment. “I was a little scared of how the kids will view me and judge me for the way I look because children are usually very curious,” she said.
With her attachment, comes another form of challenge. She stated that because of her poor eyesight, it might affect the way she handles children. If she doesn’t wear her glasses or if they’re really far away, she can’t be aware of them. If they have an outdoor play for a period of time, she’ll need to be cautious of herself because she can’t stay under the sun for too long. “I’ll struggle a bit but the children are always very patient and they understand as long as I explain to them.”
She sees this attachment as an opportunity to educate children briefly about Albinism. “I would say that everyone is uniquely made. Just like some are good at arts and crafts or some have brown hair. No one is made the same. So for someone like me, I’m made with having blonde hair, fair skin and light blue eyes.” With that, the children understand.
Moving towards a Liberal Society
Discrimination against albinism may not be as prominent in Africa but just because it is not widely talked about in Singapore doesn’t mean it does not exist. Many research have been done and it was found out that people living with albinism not only face health complications but also serious social and emotional challenges despite having family affection and support.
“Treat me normally. I am not different in any way other way. I may look different but treat me as a normal friend and if i need help, I will definitely ask for your assistance.” Hillary stated, in hopes of raising awareness amongst the society in Singapore.
“People with disabilities want to be treated normally but be assured that people will always be willing to help and assist them”, shared Hillary. It is important for Singaporeans to know that they hold a pivotal role in helping to educate and raise awareness of albinism in the society where they can encourage cohesion regardless of race, colour, religion and language.
Photo Captions: Hillary shares with us experiences living with albinism in Singapore, hoping to raise awareness about albinism.
Source: Hillary Lee Yin
“In the past, I would think that being special is weird but now, I think it is a good thing”, Hillary expressed. “Everyone is special and I like that I’m special, I have come to learn to like that I am special.”
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