my journey as a research assistant and person with albinism….

I am Meghann Buyco, a research assistant for the mothering and albinism project. My work has been on a meta-narrative synthesis, and I have been coding the many peer-reviewed articles and grey literature included in the synthesis. As a person with albinism, the research about the condition has been an enlightening journey for me these past months! The most interesting and striking among all of the articles are those describing personal experiences which people with albinism have chosen to share. I was drawn to these articles because I found in them a community of people I deeply connect to, despite not having met any of them. I have not experienced the extreme conditions that many individuals with albinism are forced to endure, especially in countries in Africa, but I do understand the challenges they face as they try to compensate and fit into society.

People with albinism are different, yet they are not.

~ Meghann Buyco

The paleness of our skin stands out, and I have found many people with no knowledge of albinism do not know what to make of this. We have disabilities, yet these are not completely understood by others. For instance, we have visual impairments, yet we are not blind. Thus, what people understand about being blind does not necessarily apply to persons with albinism.

 Reading other’s stories, I could not help but reflect on my own experiences with the condition. I grew up in the Philippines and like others with albinism, I had challenges. My physical appearance often drew attention. I remember numerous occasions when the first thing a stranger would ask me was: “why are you white?” But as a child, I did not fully understand why I was different from my family and friends. My parents were constantly on the defensive when people talked about me. I always had to wear long sleeves, hats and/or sunblock, but often would not want to because I would stand out even more. I avoided school activities that involved being in the sun. I sometimes failed my quizzes and tests because, even though I already sat at the teacher’s table in front of the class, I still was unable to see the questions. Therefore, I would be anxious the night before, not because I would have a quiz or a test, but because I may not see the words written on the board and would have to fail the quiz altogether. I chose not to do new things or go to new places because I usually could not see the signs, labels and menus, and thus would have to depend on others. For instance, I needed someone to read the bus number or train route because I could not see it. These are some of the experiences I could not really express or relate with others on. They all seemed like little problems, and almost irrelevant to me at the time because I was and still am so blessed. I knew that there were people with more severe medical conditions and hardships in life. But when I read the articles about albinism in which people expressed similar concerns, my struggles and difficulties were validated.

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I am now in my last semester of nursing school, and will graduate with my Bachelor’s of Science in Nursing in a few months. Despite being rejected by two post-secondary nursing schools who doubted my ability as a person with albinism, and left me temporarily also doubting my own ability, I continued to chase after my passions and goals. I learned to advocate for myself and let down my guard to allow others to help me. I constantly explore ways that I can compensate for my limitations, learning to navigate how to perform my nursing duties around my disabilities. I am proud of this accomplishment as it has been my condition that has given me the drive, not held me back.  Albinism made me stronger, more resilient, empathetic and dedicated. So, when I was given the opportunity to make even more of my nursing school experience by joining this mothering and albinism research team, I was ecstatic and felt empowered. Here is to the hope that change would come forth, positively impacting others with albinism, so that those who are struggling can be given a voice, an opportunity to live with support, and experience full-fledged human rights.

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