It was a week before Arturo Soto’s birthday in early January 2020 when he noticed something obstructing his vision.
“I started noticing this white cloud in the middle of my vision, only in my left eye. It started very little and I didn’t put much mind to it,” Soto said.
The recent Benjamin Cardozo High School graduate and Flushing resident recalled visiting his optometrist, who told him his eye was “healthy and normal.” But his doctor sent him to an ophthalmologist to get a second opinion and then to his neurologist on what Soto called a “doctor scavenger hunt.”
His final stop was to the office of neuro-ophthalmologist Dr. Robert Rothstein, who conducted months worth of tests and ultimately diagnosed Soto in July 2020 with Leber Hereditary Optic Neuropathy (LHON), an inherited mitochondrial disorder that typically affects young males between ages 10 and 30.
“No one in my family had ever had it before or experienced it as far as I know. I spoke to my grandparents and my great aunts [and] we were just very surprised,” Soto said.
But Soto said that he’s come a long way since his diagnosis a year ago and that modern technology is always advancing to help the vision-impaired.
“There’s a saying in Spanish that says, ‘no hay mal que por bien no venga’ and it means that there is not a bad thing that doesn’t come without a reason.”
Guiding eyes for the blind
For much of Soto’s journey with vision loss, he had been using a cane but was seeking other options to help him navigate the “sighted world.” After speaking with family, friends and his teacher for the visually impaired (TVI), he started thinking about getting a guide dog.
“Unlike the cane which is designed to detect obstacles, a guide dog is designed to avoid them, guide you and navigate you through them,” Soto said. “Personally, I was getting sick of using my white cane and always bumping into people or hitting people’s feet.”
So in the midst of the COVID-19 pandemic, Soto decided to enroll in the Guiding Eyes for the Blind program, which pairs legally blind individuals who are at least 16 years old with their own guide dog.
He recalled that the organizers worked to follow strict COVID-19 protocol in order to keep everyone safe and that his program was “shorter than normal.” In two weeks, Soto learned the ins and outs of living with and caring for his guide dog Vangie, a 2-year-old yellow Labrador retriever.
“I did have to learn how to work with Vangie, how to feel comfortable with the harness, how to put it on [and] how to take it off. But not just that because this is not just my first guide dog — it’s my first dog in general.”
Since Soto never had a dog growing up, he learned the basics of taking care of Vangie, including brushing her teeth, administering medicine, grooming and even learning to play with her.
The Flushing resident said that it was an “impeccable process” getting matched with Vangie, who he calls his “match made in dog heaven.” He added that the program took into account various factors including dog breed preference, walking speed, height, cane skills and personality.
“She’s very calm and zen when she wants to be and then she gets these spurts of energy out of nowhere; she’s very dynamic.”
During his time with Vangie, Soto said that he found a companion for life.
“Vangie is not just my set of eyes and my guide, she has become a friend [and] a confidante. I just have that bond with her where she’s a great listener. She’s really everything. I don’t call her my guide dog; I call her my super dog.”
Soto said that he noticed positive changes in his mobility and and social life since being paired with Vangie.
“More people come up to me [to] ask me [and] talk to me about her. She’s really a social magnet,” he said.
Advocacy and empowerment
While training at Guiding Eyes for the Blind, Soto had an idea to form a group to teach fellow young people experiencing vision the skill of self advocacy.
“Before Vangie when I was just using my cane, I didn’t realize how important self advocacy was,” Soto said.
But an encounter where a store’s employee said that he could not enter with Vangie, required him to stand up for his rights. He explained Vangie’s role as a guide dog and said she was allowed wherever he went under the Americans with Disabilities Act.
“I felt empowered, not just because I stood up for myself, I just really wanted to educate that person [for] the next person [who came in] with a guide dog.”
He spoke with his TVI and eventually connected with the director of educational vision services at the New York City Department of Education, to form what is now known as the EVS Blind and Low Vision Empowerment Group. The organization works on “uniting the blind community and empowering blind and low-vision students in the NYC Department of Education.”
Soto led the group’s inaugural event on June 5 and received positive feedback from dozens of parents and students who participated.
“What they told me made me realize that this was work that I had to continue and that needed to be done. Almost every student that showed up told me that now, they were making plans for the future. Some who were going to be juniors and seniors, who thought that they couldn’t go to college because of their blindness, were now telling me that they were even thinking about career options,” Soto shared.
Students from Queens and Brooklyn attended the first event in Sunnyside but Soto has plans to expand the group’s reach to all parts of the city. He also said that although the group is currently only open to high school and college students, there are also plans to include middle school students.
The EVS Blind and Low Vision Empowerment Group is having another meeting next month and those who are interested can learn more by reaching out to Soto at 917-595-6029 or Diane Pena at 917-698-3771.
