By Maryann B. Hunsberger
Photos by Rebecca Shavulsky
When Hollis Painting, communications director at Advancing Opportunities in Ewing, contacted me about Carly Hewitt, she told me that the 23-year-old had a compelling story to tell. Hewitt reached out to me by email soon after, expressing an interest in being interviewed. I didn’t realize as I tried to set up a phone interview with Hewitt that she is mostly nonverbal. We began our communication by email, and I soon learned that Hewitt was emailing me using only her eyes. We set up an appointment to meet in person.
In the meantime, I spoke with Jeannette Van Houten, an assistive technology consultant at Advancing Opportunities, who has been assisting Hewitt in gaining self-sufficiency through the use of hands-free computer access. Hewitt was in the process of transitioning from high school to college when she began working with Van Houten. She had been using an old computer system that wasn’t right for her.
Hewitt explained that her disability affects all of her muscles. “I am on a ventilator 24/7 and in a wheelchair. I had a computer where I activated a switch on my forehead. This was very tedious because when I had to write anything, I had to wait for the scanner to scan each letter that I wanted to type. This would literally take hours to type a small paragraph.”
The State Division of Vocational Rehabilitation (DVRS) referred Hewitt to Advancing Opportunities to address her needs. She met Van Houten, who wanted to make independence achievable for her. Van Houten knew that Hewitt wanted to do everything young women her age did, such as attending college, working, shopping, emailing, and using social media. But the older computer system she was using wasn’t reliable. The single copper switch strapped to her forehead only operated when her eyebrow would twitch, and it required constant repositioning. Since the switch required conductivity to her skin, it wouldn’t work with perspiration or dry skin. “She had to be wired to the computer every time she wanted to type something, and there were a lot of wires. It was a failure and a lot of frustration. Carly would get tired and only have enough energy to do so much,” said Van Houten.
She considered Hewitt’s college needs, as well as her future employment needs. “We knew it would be extremely frustrating in college and in the job world to spell each word letter-by-letter and to hope her switch worked on a regular basis. We needed something better that would work consistently.”
Through Advancing Opportunities’ Technology Lending Center, Hewitt tried three eye-gaze systems to find the right one and chose the Tobii Dynavox eye tracker. This allows her to have complete access to her computer. “There is nothing on her computer that she cannot use. It’s quick, which is important. She can do the things she wants to do—writing papers, research-ing, emailing, social media—all the things you and I do on a daily basis. I told her to only spend 15 minutes at a time using the system, but she wouldn’t stop using it. She can spend two-to-three hours on the computer without having problems. She has a freedom that she didn’t have otherwise.”
At her Sayreville home, Hewitt, now 23, demonstrated to People & Families photographer, Rebecca Shavulsky, and I how she uses her laptop system. Her mother, Lori Hewitt, and her nurse, Cathy Marinaro, set up her laptop and a small camera that is about the size and shape of a pen on the dining room table. Hewitt’s eyes are calibrated to the camera, called the PC Eye Mini. When she settles her gaze on a letter, the laptop types that letter. When she settles her eyes on a left-click mouse icon, it performs a left-click. Using only her eyes, Hewitt left clicked her mouse, opened her word processing software and began typing. She then quickly showed me how she could switch from word processing to Twitter and Instagram, where she scrolled through all the pictures she has posted.
After graduating with honors from Middlesex County College, she now maintains an A average at Rutgers University New Brunswick, where she is being inducted into the psychology honor society. She majors in psychology and minors in education. Her mother, Lori Hewitt, said, “Carly’s education is very important to her. She is very determined to succeed in everything. She doesn’t give up.”
Carly Hewitt said, “I always wanted to become an elementary school teacher, but with my physical limitations, I realized that this would be a tough career to have, so I decided that I want to do something with psychology and children. I am so blessed to have the opportunity to go to school and be able to use assistive technology to help me with everyday tasks that everyone else can do independently.”
Hewitt’s life has its share of difficulties, so it’s important that her computing is as easy as possible to do. Her medical care is time consuming, requiring 16 hours of daily nursing care. Her mother handles the other eight hours daily. She needs suctioning of her tracheostomy tube, respiratory treatments with a nebulizer, tube feeding, and someone to manage all her daily living needs.
Her mother is pleased with the services provided by the Disability Services Office at Rutgers New Brunswick. “Carly likes Rutgers even more than the county college. They are great at accommodating her. They put her notes online so she doesn’t need a note taker in class. A proctor takes tests with her. She takes essay tests on her computer.” Marinaro or her other nurse, Lisa Springer, accompany her to school and do things such as helping her respond to multiple choice test questions. Her nurses have been with her most of her life and they are fluent in using the Tobii Dynavox.
Like most people her age, Hewitt also enjoys recreational activities. She attends country music concerts and Rutgers basketball games, hangs out with her cousins, goes shopping, goes to the movies, and goes roller skating with her mother or sister Megan, 26, pushing her wheelchair around the rink.
Van Houten points out that Hewitt’s life is richer from using her computer system. “Using the computer gives Carly a chance to have ‘me time.’ Carly can listen to music, go on social media, and do whatever she wants to do. It’s not always about work or school. Her mom can do something else. They might be in the same room, but they are doing separate things. It’s been good for the whole family.” Van Houten is continually impressed by Hewitt’s never-give-up spirit. “She doesn’t know what ‘no’ means. To her, it just means she has to try harder, work harder, change someone’s mind. She doesn’t accept ‘no.’ Nothing will stop her from following her dream. She chases that dream and makes it work.”
Hewitt can’t say enough about how her eye-gaze system helps to make that possible. As I sat next to her at her home, she brought up a Word document and typed, “This computer is my life-line because I can do what everyone else can do. I don’t know where I’d be without it.”
Advancing Opportunities’ Technology Lending Center is free for people with disabilities, their families and the organizations who work with them in New Jersey.
For more information, call 1-888-322-1918, extension 536, or go to: https://www.assistivetechnologycenter.org/technology-lending-center
Tobii Dynavox Products
Reprinted with permission from the New Jersey Council on Developmental Disabilities, https://njdcc.org.
This article originally appeared in the Spring 2018 issue of People & Families magazine. Here is a link to the publication.