blindness, chronic illness, PEARLS blog

a day in the life


it’s been a while since I last blogged, but school is hard.

I hope it was worth the wait, as I’m really excited to share something I’m officially participating in!

first, as background, there’s a truly beautiful human named Rick Guidotti. Once upon a time, he was a fashion photographer, shooting some of the most beautiful people in the world for magazines like Elle. However, he was not so blind as to think that the only beautiful people in this world were the ones everyone told him were beautiful. One life-altering day, he saw a beautiful teenager with albinism at a bus stop with her pure, stark, white hair and was captivated. Through a series of events, detailed in this kick(butt) Ted talk, he made it his goal to redefine beauty, making the faces of people with genetic conditions come to life though his stellar personality and his nonprofit, Positive Exposure

a few years ago, Positive Exposure launched the PEARLS Project, an educational initiative to bring to individuals and organizations where persons with genetic disorders and disabilities have a blog on their site. The intention is to show how “day-to-day life” for a person with a condition is not much different than without

I know Rick from going to conferences (#conferencejunkie) for the National Organization for Albinism and Hypopigmentation (NOAH) since 2010. Last year, he invited me to become a PEARLS Ambassador for my condition (peep my about me page), and between classes, I’ve created my first post!

while I may not be able to make another video like this for a while, I really wanted to do this for my first post. Half of the video is me explaining my condition, very (very) candidly. I share details people may consider to be too personal, but I see it as an opportunity for education (read: I have no chill). I didn’t go too in depth, but if medical talk of any sort bothers you, this first part may not be for you

the second half may be more interesting, as I recorded bits of my day to show “a day in the life” of a (legally) blind college student (with some health issues) studying engineering. This Thursday, March 2nd includes events like taking paratransit to class, walking to Starbucks, going to the doctor, and eating dinner with a friend

check out the video!

why am I doing this? Why share my personal life on the internet? On the surface, I want to normalize disability, showing that we aren’t much different than those without disabilities. I’d also love to gather more awareness for my condition. However. as I mention in the video, I have a strong faith that believes a lot of why I’m still living on this earth is to keep sharing my story. I want others with disabilities to know they’re not alone, and to point to my faith in God, because He’s honestly the reason I keep going

I’d love to hear feedback, so feel free to comment here and/or on this Facebook post. Also, if it’s a more personal question, send me a private message, and while I’m notorious for not answering messages quickly, I’ll try my best to get back to you. With summer coming and since I have to post to PEARLS a few times a month, my posts may get more frequent (woo!)

but for now, have a sunshiny day ☀️

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