- Massachusetts Commission for the Blind
When Elana Regan, 18 of Hopkinton, first began losing her vision at age ten due to Stargardt Disease, she and her parents felt overwhelmed. With the help of devoted teachers, MCB resources, community support, and her own perseverance, Elana has come a long way.
“Elana has been a go getter from the start!” said Mayanne MacDonald Briggs, Elana’s MCB transition counselor. “She is an amazing young woman who has accepted her visual impairment, understands the skills she needs to acquire and hasn’t let anything hold her back.”
Whenever Elana was feeling overwhelmed, she said that MacDonald Briggs was “just the kind of person my parents and I could go to and ask any question. She would say, ‘It’s going to be fine. It’s going to be good. And she was the one who really got me involved in all sorts of outside activities.”
Although adapting to her vision loss has been a challenge, a big part of Elana’s success has come from taking advantage of the opportunities and resources that come her way. Over the past ten years, she’s hiked the Grand Canyon with the No Barriers youth expedition, rowed with in Adaptive Sports New England, worked with the MCB Pre-ETS team to secure internships at a Worcester law firm and research with a Clark University professor. She’s participated in Perkins Outreach programs and the Polus Envision Success Project, recorded her own weather report segment, and applied to some of the top women’s colleges in New England.
Deirdre Nyberg, a veteran teacher for the visually impaired (TVI) in the Hopkinton School District, has worked with Elana for the past several years. She recently met with Elana and the MCB communications team on Zoom to reminisce about their time working together. The strong bond between teacher and student was clear as Elana beamed when Nyberg glowingly praised her progress.
“This has been the best journey in the world. Elana has been a joy since day one. When we first met, she was a shy little sixth grader who was embarrassed about using her cane,” Nyberg said. “To see her bloom like this is just amazing. She’s learned to advocate for herself. She’s done what I wanted and put me out of a job! Elana’s going to be a success wherever she goes."
One summer early in the process, Elana taught herself three-fourths of the contractions in Braille. When she returned to school in the fall, Nyberg was surprised at her progress
“She's always shown a lot of motivation practicing on her own, just eager to learn, and never wants to give up,” said Nyberg. “For example, I decided to start teaching her math in Braille. And I said, ‘Okay, let's start with a simple operations.’ And she's like, ‘Can you show me how to do the quadratic formula?’ I said, ‘I'll get back to you on that!’”
Elana has grown into her confidence, though at the beginning of her vision loss things were different.
“I didn’t want to seem different,” Elana said. “I didn’t want to use the cane. It helped to meet other blind individuals. I did the Carroll Center summer programs for two years. I met other kids who were fine with who they were and having a good time.”
An internship in Worcester with a blind lawyer, who specializes in disability law, changed Elana’s perspective. She learned to travel by commuter rail to work and gained the job and community skills needed to succeed.
“[The lawyer] is so confident in herself,” said Elana. “She gets what she needs. She does everything that anyone else does, but she just has to do it a little differently. That cemented into my mind that, even though I’m blind, I can still do whatever I want, it just might look a little different. I can be who I am. I can just go down the hallway with my cane, and that’s who I am.”
This past summer, Elana interned with a college professor from Clark University. Elana’s responsibilities included developing a spread sheet of environmental agencies, the types of services they offered, and their contact information using Microsoft Excel. Excel is difficult software to navigate for individuals like Elana who rely a screen reader for accessibility. The Polus Center staff were able to provide her with Excel training, and she was on her way to a successful internship.
Though typically persistent and upbeat in facing the challenges of her blindness, in her college essay Elana described how a seemingly impossible school assignment caused her to reevaluate her attitude about advocating for herself and asking for help when needed.
“In most situations, my persistence serves me well,” said Elana, “But more recently, I learned that it has its drawbacks too. It can leave me physically depleted which can prevent me from enjoying my life. I realized I needed to change. I felt like I was failing. I wasn’t sleeping, I was stressed, and it was beginning to affect my health. I needed to stop and protect myself, so like a guide dog I began to learn intelligent disobedience.”
Elana talked with her teacher about making some accommodations to her class presentation, which originally required reading quotes off a projected slide. When Elana stood in front of her class, she jokingly said, “You all have eyes that work. You can read the quotes.” She heard some kids chuckle, and her pounding heart slowed.
While researching guide dogs on the Guide Dogs for the Blind website, Elana learned the concept of “intelligent disobedience,” where a dog defies their handler’s command when it believes obeying is unsafe. That concept changed Elana’s point of view about knowing her limits and advocating for herself.
“That pivotal change came when I learned intelligent disobedience, a term used in the training of seeing-eye dogs,” said Elana. “From birth, guide dogs are taught to follow orders, and the tight bond between dog and handler makes disobeying difficult. Only the best dogs learn to back away from oncoming traffic or the edge of a train platform even as their handler urges them forward. Few dogs are talented enough to reach this important final step of training.”
Rather than constantly pushing herself, she’s learned “it’s okay to pause, back away, and reassess” obstacles that come in her way.
“This year I am becoming a guide dog user, and just as I have faith in my dog, I have faith in myself,” said Elana. “Because I know I can advocate effectively for myself and others, stop myself when pushing harder is unsafe, and still achieve all my goals.”
Over the past year, Elana has been a mentor to a younger student in the Hopkinton School District who is losing her vision. Teacher Deirdre Nyberg, who works with both students, helped arrange Zoom calls so they could meet during the pandemic.
“[Elana] is a wonderful mentor,” said Nyberg. “She is really inspirational with younger people. I love seeing her talk about her vision, whether it’s to someone who is also going blind or to someone who just needs to understand it. She has a sense of humor about it all, which is important in this life. With that you can kind of overcome anything.”
Looking to the future, Elana hopes to give back by going into politics and government. She wants to advocate for individuals who are blind and for individuals with disabilities.
“I think advocacy and being able to stand up, not only for yourself, but for the entire blindness community, and for people with all types of disabilities, is very important,” said Elana. “A lot of the discrimination and biases that people have are based on misunderstandings. They're not meaning to be rude, but just don't quite understand how I as a blind person can live. I find it very important to educate people, so that if they meet another blind person, they know what to do, they know what to say. And they have a little more information."
Listen to an audio reading of Elana's story provided by our partners at the Audible Local Ledger, part of the Massachusetts Audio Information Network - your MAIN source for accessible Community News and Information: http://www.audiblelocalledger.org/mcbinfo.html.