The Reality of Retinopathy of Prematurity & A Positive Experience in Education – Guest Post by Macy

*Links provided below are not commissioned, this means if you decide to purchase a book(s) via the link marked with * I will not receive any commission.

The Reality Of…” is a series with the aim to raise awareness of disabilities, illnesses, impairments, etc. Also, educating others about the barriers that disabled people and carers face. I hope this series helps to break down misconceptions and stigma.

Life doesn’t have to stop when you have a disability.

Meet Macy

Hi, everyone! My name is Macy and I’m from Utah. I work as an author, so, keeping this post short might be a problem, but I will try my best to adhere to Ami’s prompts. It’s hard to decide what to write about because I have so much that I want to say, but I have chosen to briefly write about my experience with education; at the end of this post, I will put a link to an interview that I did for a podcast in 2020, as well as, a link to order my three books (there are more books coming, so, keep an eye on the link), and links to my social media platforms, if you want to follow me.

I was born seventeen weeks early, at twenty-three weeks gestation, and I weighed one pound two ounces.  In my first year of life, I had eleven surgeries, and ten were on my eyes.  The eye surgeries were attempts to stop my retinas from detaching, but my right eye never responded, resulting in total blindness.  My left eye responded to the surgeries and I have about ten percent central vision in that eye.  My eye condition is known as Retinopathy of Prematurity, (ROP).

Photo of Macy, at a side angle. She has long dark, wavy hair, is wearing glasses and smiling broadly
Photo of Macy, at a side angle. She has long dark, wavy hair, is wearing glasses and smiling broadly

My Experience With Education

Growing up, my family was very supportive of me and they encouraged me to participate in all activities, which gave me a confident attitude, and that attitude helped me when I had to overcome obstacles.

My vision has been stable throughout my life, which has been a huge blessing.  When I started pre-school (nursery school for my UK friends) I attended The School for The Blind of Utah and there, I started to learn braille, how to use a cane, my print letters, and other techniques that I continued to learn when I went to elementary school (primary school).

I left The School for The Blind of Utah, when I was going into second grade and mainstreamed into public school.  I had the opportunity to work with two teachers for the visually impaired and their assistants, who followed me from second grade, until I graduated from high school. 

Their jobs were to help me with the following: ensuring my braille reading was at the speed of my peers, how to do mathematics using an abacus, how to write braille using a slate and stylus, sign my name in cursive, computer skills, self-advocacy, and how to text on my talking flip phone (because the iPhone had just been released and I didn’t have one when I was headed to university).

I had a wonderful orientation and mobility instructor who took me up to the university campus before I began, and helped me learn the buildings that I had for my first classes and how to get around, so when the semester began, I was able to navigate independently. 

An open book, with a person reading Braille
An open book, with a person reading Braille – Photo by Mikhail Nilov from Pexels

The first year I attended university, I got lost several times.  I always like to show people that I am confident, but each time I got lost, it was a really scary feeling; however, I learned how to problem solve (without technology because I still didn’t have an iPhone at the time), which meant I had to ask for help, and I always found kind people who were more than willing to lend me their eyes and help me find my way to the right building and classroom.

The Disability Center that I worked with when I was at university was absolutely outstanding because they made sure I had everything I needed to have a successful education; I would encourage anyone who has a disability and is attending university, to connect with the disability center and ask for the accommodations they need.

During my education, I was fortunate to have wonderful school teachers and university professors, the majority of whom were willing to do whatever they needed to ensure that I had a good experience in their classes and was able to do my coursework.

I graduated with a Bachelor’s degree in History and a Minor in Writing and Rhetoric Studies, and now, I spend my time reading, researching, and writing novels and children’s books!

I use my iPhone (with VoiceOver that tells me what’s on the screen) and a laptop with JAWS (a screen reader which reads what is on my laptop screen) to research and write my novels.  I love reading books in braille, but most of the time, I use a special device called a Victor Reader Stream (which is like a Kindle with buttons for the blind) and I get my books from BookShare which has books in several accessible formats.

My Favourite Superhero

Ami asked what my favorite superhero or villain is, and to tell you the truth, I don’t have a favorite superhero or villain because I spend my time reading history books.  I will say that I like all superheroes because they are special in their own way, just like each one of us!

Thank you so much Macy for raising awareness! You can view Macy’s books* or listen to more of her story on this podcast.

Also, if you would like to stay up-to-date with Macy, then you can find her on Twitter or Facebook!

4 thoughts on “The Reality of Retinopathy of Prematurity & A Positive Experience in Education – Guest Post by Macy

  1. Thank you for this post. I didn’t realize that prematurity was still causing blindness. My twin classmates in grade school in the 1950’s had been born prematurely and placed in an incubator with full oxygen. It destroyed their vision completely. Their mother was a fierce advocate for mainstreaming them, very unusual at the time.

    Liked by 2 people

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