People with disabilities lead lives that many of us will never be able to understand. They face many hardships, including ignorance from those without disabilities. Many people treat those with disabilities as inferior, simply from a lack of knowledge and understanding.
We should always be open to learning more about what we may not fully understand. My opportunity to learn more about living with a disability came when I met Esli Ramos.
You may have seen or met Ramos before, she’s been a JJC student since the fall of 2017. Ramos was diagnosed with retinitis pigmentosa (RP) when she was seven and her vision began slowly worsening with age.
RP is a “group of rare, genetic disorders that involve a breakdown and loss of cells in the retina — which is the light sensitive tissue that lines the back of the eye,” according to the National Eye Institute.
Ramos first began to notice she was visually impaired in second grade, while working on a coloring sheet. Her teacher noticed that instead of using the color green to color a circle, she used purple. She could not read the printed word “green” on her sheet.
“I did [also] have regular symptoms of sight impairment that [most] people have,” Ramos said. “This included not being able to see the board from far away and not being able to read print unless it was large.”
Now at the age of 26, she cannot read print at all. She uses Braille and audio devices to help make everyday life more easy and accessible.
“Laptops, recorders, and Apple devices help me in my everyday life,” Ramos said. “These devices allow me to complete tasks such as texting, school work, and listening to music. Having these available to me makes a great difference in my life.”
Prior to JJC and after high school, she attended the Illinois School for the Visually Impaired, where she practiced many different independent living skills.
“From there, I decided to come to JJC,” Ramos said. “I kept hearing about the school through my cousin and about their Disability Services office, which I think was called STAR at the time.”
Ramos also uses a white cane to navigate her steps. She knows her visual impairment might make her stand out from the rest and because of that, one might be tempted to treat her in a special way. However, she likes to make it clear that she can get around all by herself.
“I want people to know that I’m just as capable and independent as they are– and that goes for everything,” Ramos said. “When I turn down help, it’s not out of stubborness, I just know I can do it and it frustrates me when I’m helped without even getting the chance to try first.”
It can be uncomfortable, even frustrating, for Ramos when her accommodation needs are “announced” to the whole world, without her say. It takes a lot of getting used to.
“Sometimes in classes, the teacher has to somewhat announce my accomodation,” she said. “Like, ‘do you want to sit up closer’ or ‘do you want me to email this document to you?’ [Although I understand] it sometimes kind of has to be announced.”
Ramos does not believe in “I can’t.” She plans to graduate with a degree in early childhood education and she’s heavily involved in all sorts of clubs and activities on and off campus. “The first club I joined was Latinos Unidos,” Ramos said. “My family is Puerto Rican and it helped me learn a lot about my culture.”
She believes it’s important to get involved and keep busy. She says what she loves most about being involved is, “Meeting so many different people and helping plan activities. Seeing them come to life afterwards is so fun.”
Ramos is on a mission to change the way people with disabilities are viewed, starting with herself. She encourages people to ask her questions about her disability and generally does not take offense to it.
“Anyone who knows me knows I don’t mind answering questions,” Ramos said via Facebook. “I don’t find it offensive at all… I want to take this as an opportunity to educate about my visual impairment as well as others who are blind or visually impaired.”
Keep in mind, around 61 million adults with disabilities live in the U.S, according to the Centers for Disease Control and Prevention. They are our classmates, relatives and friends and they have the right to be treated the same as everyone else.
We can all contribute to changing the way people with disabilities are viewed and treated. We can all start taking the steps towards equality. The first step is learning more about them.
Internationally, we need to start seeing more people with disabilities in leadership and decision-making roles and in entertainment. New York Times bestselling author Jennifer Armentrout has used her platform to bring more awareness to RP.
Last June, Armentrout published the book “Storm and Fury,” which follows a young girl (Trinity) with RP who, although is slowly losing her vision, has the ability to see and communicate with ghosts and spirits.
“A lot of what Trinity experiences is similar for me,” Armentrout said in an interview with the Orlando Sentinel. “So I had to pull a lot of real-life experiences when it comes to my vision loss and how I feel about the prospect of eventually losing my vision.”
As the saying goes, knowledge is power. To expand your knowledge, and disability awareness, a great organization is to follow is Special Books by Special Kids (SBSK). This project was founded by former special education teacher, now disability-rights activist, Christopher Ulmer.
Ulmer travels the world to meet and interview people with a wide variety of disabilities. SBSK posts videos of these interviews and helps followers learn and connect to these individuals.
And remember, don’t be afraid to befriend someone with a disability and politely ask if they could answer your questions. As long as the setting is appropriate and you’re not degrading or disturbing anyone, they will most likely be happy to answer rather than have you assume something about them.
There is always time to spread kindness and use our differences to learn and create a better and more accepting world.