Mariely Sosa packs her bag, unfolding her pink bedazzled cane as she stands.
Gage Long zips his backpack, grabbing the arm of his teacher, Ed Rabel, a teacher of visual impairment at Wilkes-Barre Area.
They leave the classroom also with Nanci Romanyshyn, an orientation and mobility specialist placed at Wilkes-Barre’s high school through the Luzerne Intermediate Union, heading for the cafeteria in eerily quiet, empty halls just minutes before classes change.
Long and Sosa are both 17 years old. On top of worrying about post-graduation plans, social events and maintaining their good grades, they live with disabilities that most young people do not have and might not understand.
According to the CDC, only about 3% of people under 18 have blindness or vision impairment.
The American Foundation for the Blind found that about 19,328 people aged 5-18 had vision difficulty in Pennsylvania as of 2019, according to the most recent data available.
Long, who is completely blind, and Sosa, who is visually impaired, get accommodations like leaving classes early and using their cell phones in class.
Visual impairment means that issues with seeing cannot be fully corrected with medicine, surgery or glasses.
Sosa has tunnel vision, no peripheral vision, can’t see in the sun or dark and can only see out of the central part of her eye. Her condition mimics cataracts and retinitis pigmentosa.
They navigate the school day with the help of their aides. Both students take high-level classes with other students, and Sosa also leaves the school day early to take early enrollment classes at Luzerne County Community College (LCCC).
Romanyshyn proudly mentions Sosa of her high rank in the senior class.
Federal funding concerns
Once they graduate, their public school support system in Romanyshyn and Rabel will be left behind.
They’ll utilize services, like the Bureau of Blindness and Visual Services, for assistance in their adult lives. They value those services and their help in getting them to independence.
“Especially now, when I will very soon be transitioning to college, I need this assistance to help me to college, to help me from the position I'm in now to complete independence,” Long said. “Agencies such as that are my stepping stones on the way to achieving that independence.”
However, Long worries about the future of that type of programming with the federal funding freeze and looming cuts.
“To get a lot of the assistance we need, we work through various agencies, organizations designed to aid the blind in transitioning to independence,” Long said. “Because of funding issues, the federal funding freeze, these organizations are in a precarious position right now."
"It does concern me that I'm afraid they {the organizations} won't get the funding they need," he said. "I'm afraid they won't get the recognition they need from both the government and from society as a whole, who doesn't really know they exist because they're not at the forefront. I'm afraid that with time, I might not receive the assistance I need to achieve independence.”
Overcoming challenges
Long uses a computer program called non-visual desktop access, or NVDA, that reads assignments and lessons aloud. He wears headphones in class so he can follow along in real time.
Sosa customizes settings on her laptop to make the text larger and the background less harsh on her eyes, since bright light makes it difficult for her to see and gives her migraines.
Long enjoys working with and learning new technology.
“Luckily for us, Gage from a young age, just took to technology,” Rabel said. “That's his thing.”
However, sometimes teachers don’t understand the nuances of his NVDA, making it difficult for him to complete work.
“[Some teachers] scan documents into a PDF format and then send them to me via email. They scan them by taking pictures of the documents, and because it's an image, I genuinely have no way to read that,” Long said.
Long prepares to need extra help, especially when documents are sent in incompatible formats.
“There's also been cases where they send PDFs and it's separated into rows and columns, and because of the way my screen reader reads documents by default, it doesn't always show it textually and audibly, how it would appear visually. So, I might sometimes miss things that are being shown,” he explained.
Sosa can see with a limited capacity. She wears glasses, but many people do not consider her as someone with a disability.
“Because I walk fine… because people see me have glasses, and I'm talking to you and I'm looking at you, and then they think I'm looking right at them,” she said.
This initially made it difficult for her to receive a diagnosis. She noticed she was having trouble with her vision in third grade, but did not get a diagnosis until she was in fifth grade.
“About the third-grade experience, no one would ever believe me,” she said. “Later I became depressed about it. Then later, I started getting more support from people here, family and friends, and then I started feeling better to start doing more things like extracurriculars.”
Even now, years into living with visual impairment, she encounters situations where her disability is not fully understood.
“She looks like anybody with a pair of glasses on,” Romanyshyn said. “So I think it's frustrating. Even [her] family might not quite understand 100% what she deals with.”
Recently, she went for a scholarship interview at a college. She prepared for an interview, but not a written portion. She was caught off guard and could not see what she was typing and later recited her essay from memory when asked to read it aloud in front of the other scholarship hopefuls.
“My disability, my accommodations, were overlooked,” she said.
In situations like that, Sosa has a hard time speaking up. She feels she’s already asked for enough and does not want to inconvenience others or hurt her chances of doing well.
She’s been working on advocating for herself, but in some situations, like the scholarship competition, she stays quiet.
“I'm getting better, but I'm still trying to learn that,” she said.
“I think both Gage and Mariely would say they feel bad saying something sometimes,” Romanyshyn said.
Long sometimes hesitates to ask for help, especially if he thinks someone might not be receptive to his requests.
“If it's a teacher I really need help with, I would be afraid to call them out and then sabotage my chances of receiving assistance later, has been my thought,” he said.
Luckily, he said, situations like those do not happen often.
Long and Sosa work with outside agencies like the Bureau of Blindness and Visual Services to get assistance outside of school. While the agencies have been helpful, sometimes they deny their requests for technology that would make their lives easier.
Recently, Long’s request for an OrCam My Eye device was denied. Sosa's request for the similar Ray Ban Meta glasses was denied too. Both technologies narrate the wearer’s surroundings.
“Both these devices would help us majorly, if we could only get them,” Long said.
If the organization determines that an individual can live without that device, then the request gets denied, she said.
“When relying on these organizations, you really have to justify if you really, really need this, because you can't just get whatever you want from them, unfortunately,” Long said.
Building confidence
At first, Sosa did not want to draw attention to herself and her disability. She didn’t like using a cane, even though it does help her.
Romanyshyn helped her bedazzle several canes so that she had options to match different outfits. That day, Sosa was using her pink bedazzled cane.
She used the cane at Pennsylvania’s Future Business Leaders of America (FBLA) statewide competition last year, held annually in Hershey. She was shocked at people’s reactions to the cane since she was initially so worried about using one.
“I feel like a lot of people were willing to help me,” she said.
This year, she’ll return to FBLA’s state competition after she won first in the regional competition in her event, Management Information Systems.
She also rejoined the cross country team. She quit after falling during her junior year season. Since cross country is a fall sport, athletes are typically running in sunny and bright conditions during practice and meets. That poses a problem for Sosa, who cannot see in the sun.
She rejoined after receiving encouragement from Romanyshyn and her coach. This season, she hit a personal record, running her best race in 30 minutes flat.
She runs with a buddy, who is typically Romanyshyn. Sometimes, an athlete from the boy’s team will run with her after his race. The buddy acts as her eyes, allowing her to focus on her race and not be preoccupied with potentially injuring herself.
“If the sun's out, I don't really see a lot. It's usually like someone screaming at me, ‘Go to the left, go to the right. There's a branch.’ Miss Nanci would sometimes [say], ‘Go on your toes. You're going up a hill, or jump over a hole,’” she said.
Being a part of the cross-country team helped her build self-confidence.
“[Cross country] made me disciplined. When I didn't want to run, I had to run. It made me more open to ask people for help,” she said.
Romanyshyn pushed Sosa to rejoin because she knew how good it would be for her to be part of the team.
“That's where I think cross country helped tremendously,” Romanyshyn said. “Her confidence skills between last year and the last two years have increased tremendously with [her] advocacy.”
Long has lived his entire life without being able to see. He wants people to know that he is just as capable as anyone else.
“I have the same availability and ability to do that as everybody else, just in a slightly different form,” Long said.
A few days a week, Sosa takes classes at LCCC, which she has to travel via bus to get to.
Typically, Romanyshyn accompanies her on the bus trip, which includes a walk to the city bus stop on the school’s campus and transferring at a stop near Wilkes University.
On President’s Day, Sosa still had class but Romanyshyn had the day off. Instead of skipping class, Sosa wanted to try taking the bus by herself.
“I have to be really observant for the stops because I could miss my stop if I'm not checking. The other day, I went alone for the first time on the bus, and I was checking Google Maps just to tell me the stops so I didn't miss my stop. And I got it. I did good. So [I am] learning my independence,” she said.
Socializing
For the most part, their peers are understanding of their disabilities. However, there are a few social blips they have had to navigate as a result.
“People will say hello to me or call my name, but they don't say who they are, and in a crowded hallway, I can't always tell who it is, and then they can kind of get insulted sometimes,” Long said.
A typical greeting for high school students is referred to as “dap.”
“[People] try to dap me up. They're looking at me awkwardly. They're always telling me, ‘Oh, you're leaving me hanging.’ I can't see if you're going to dap me up,” Sosa said.
In situations like the scholarship competition, Sosa feels rude when she can’t see if someone is trying to shake her hand. She also cannot tell who is calling to her in the hallways because of her lack of peripheral vision.
Both students enjoy a social life outside of school. Sosa rushed to lunch to sit with friends. Long looks forward to playing video games with friends after school.
“A lot of people, I think, would be surprised by that to hear it,” he said. “I even play a lot of the same games, even if maybe differently.”
Romanyshyn has been helping them give presentations to other students to teach them more about life with visual impairment. To her, it’s all about understanding. Once students understand more about their disabilities, they are more likely to open up and pursue a friendship, despite their differences.
“When kids found out that Gage does gaming, and they're like, ‘How does he do the same gaming I do online?’” Romanyshyn said.
'Be kind.'
Sosa hopes society becomes more aware of the extra help people with disabilities might need.
“People with disabilities don't get the same kind of equal chance as other people,” she said, adding that she’s reaped the benefits of the kindness of strangers and friends.
“Be kind, that's all I can say, kind, patience. Be willing to help people if you see that they need help,” she said.
Long wants people to see past his disability.
“People can be different in some ways, but not in as many ways as you would think,” he said.
Long understands that many people his age have never met a person living with blindness. He thinks sharing his story, through interviews and guest lecturing in classes, can help people realize that people like him do exist.
“When you don't see it right in front of you, you really don't think about it, because why would you? When you do encounter that, you don't know exactly how to handle it. Some people just need to understand. They need to be taught,” Long said.
Life after public school
Sosa and Long will graduate early this summer. They have big plans for their futures.
“I'm planning to be an attorney,” Long said. “That's my career goal. So I'm planning to go to a community college, and then hopefully, based on how that goes, apply to law school, that's my end goal.”
Sosa’s plans include: “Go to a four-year institution, and then I want to do something in accounting. Minor in Spanish. Hopefully traveling. I want to go to see other places I don't know.”
