Each month, we use the pages of this publication to share information that is of interest to our supporters, volunteers and staff, as well as to the blind and visually impaired community as a whole. It might be an interview; it could be a description of a special event that was held at LAB. This month, we decided to take a slight departure from the norm and begin a two-part series that gives you a behind-the-scenes introduction to two of the people who work to make this newsletter possible. This month, we spotlight Suzanne Wilson, our feature writer and editor. Suzanne was interviewed by Joe LeBlanc as part of the VOICE program curriculum.
Suzanne is a native of Grand Rapids, Michigan, a mid-sized community in the southwestern lower part of the state. When she was born in May of 1964, she was three and a half months premature, weighing only two pounds and one ounce. In order to keep her alive and protect her fragile lungs, doctors placed her in an oxygen-rich, heated bed called an isolet, where she stayed for nearly three months until she was deemed strong enough to be discharged. As it turned out, the very oxygen that had saved her life caused permanent damage to her eyes. Consequently, Suzanne could only see light and shadows as a child and had no light perception by the time she was in her late teens.
She was part of a very small family. Although her sister was less than a year younger than she was, people often assumed that Suzanne was the younger of the two. As is typical of most siblings, they “fought like cats and dogs” but also supported each other in numerous ways. Nevertheless, her sister often grumbled that Suzanne’s disability was causing her to get all the attention.
Although Suzanne did not attend a school for the blind, she definitely benefited from specialized training, particularly in the early grades. She spent most of kindergarten and first grade in a “resource room” where she learned Braille and spent time developing the use of her other senses. With each succeeding year, she spent less time in this environment so that by the time she left the public school to attend a parochial one in fifth grade, she needed minimal help from a vision teacher. Although she did well with the academic aspects, her interactions with her peers were not as positive as she would have liked. Especially during middle school, she experienced numerous bullying incidents. “It was hard,” she explains, “because I didn’t feel like I had any allies with the adults, which is why I’m so happy now that there is all this attention being paid to bullying and stopping it and having kids alert authorities if things are going on.”In general, however, she enjoyed academics and was a good student. Her memories of her teachers are positive. One, in particular, came to mind: Suzanne had signed up for a world history class and was perplexed when, on the first day, the teacher told her to go to the principal’s office. When he arrived there after the class had ended, he explained in the kindest possible way that he did not believe the class was right for her and asked that she drop out. Suzanne refused, asking the teacher to give her a chance to prove that she could cope with all of the class expectations. He reluctantly agreed. At the end of the year, he apologized for his previous actions and told her what a pleasure it was to have her in his class.
Upon graduating, Suzanne chose to study at Hope College, a small liberal arts school. In the first semester of her senior year there, she attended an urban semester in Philadelphia. As a part of this off-campus program, she and her peers found apartments, obtained internships and took classes. For the first time in her life, Suzanne felt the joy that comes from traveling independently in a big, bustling East Coast city. In addition, her horizons were expanding in other ways. As part of an urban enrichment project, she came into contact with the religious organization that would, just a few months later, offer her an opportunity to live and work in the city after she graduated.
Suzanne sees the next three years volunteering with this religious society as a crucial bridge between her student life and her later identity as a full-time, paid employee. When she decided to seek other work, she became a participant at a job readiness clinic sponsored by Associated Services for the Blind in Philadelphia. Ultimately, she used the job interviewing skills they had taught her to land a job at the very same agency as a case manager. Over the next 14 years, she went from being a case manager to a vocational counselor, intake worker, supervisor and finally a middle manager who headed the agency’s Adjustment to Blindness program.
In the summer of 2000, Suzanne decided to attend a convention of a blindness organization which took place in Atlanta. In a strange twist of fate that must have come directly from Cupid himself, she was introduced to her future husband by an old friend. Although he lived in Massachusetts and she in Pennsylvania, this marked the start of a courtship that eventually culminated in her moving to Lowell and getting married in 2002. A year later, her baby girl, Michaela, was born.
While many people take for granted the fact that they will one day have children, this definitely wasn’t the case for Suzanne. “As a child and a young person,” she explains, “I was given very strong and persistent messages that I could not and should not become a parent, that it was not in my future nor should it be.” She was forbidden to babysit and was not even allowed to hold a baby without close supervision. As a result, she convinced herself that parenthood was not open to her. It wasn’t until she was in her thirties and especially after she was married that she began to question this assumption. Other blind people became wonderful and competent parents, so why couldn’t she? Nevertheless, she had many misgivings about her impending motherhood once she discovered that she was going to have a child. She credits the amazing gift bestowed upon her by two blind friends, who “gave me the gift of their baby” for a weekend. She stayed in their home and was given full responsibility for the baby’s care, with her friends standing at the ready if she had questions. She left when the weekend was over feeling both confident and empowered.
These days, Suzanne’s life is not remarkably different from that of any parent. A normal day involves helping to get Michaela ready for school, doing household chores, assisting with meals and homework and engaging in other family activities. Even so, blindness does enter the equation from time to time. She has adaptive equipment that enables her to use a computer to do her freelance writing and editing jobs, including the work she does on this very newsletter. The fact that no one in the family drives means that trips to out-of-the-way places are a challenge. And that doesn’t always sit well with Michaela, now ten years old. In response, Suzanne tries to emphasize the point that Michaela has countless opportunities that the vast majority of the world’s children do not. When it comes to family responsibilities, Suzanne and her husband have made a conscious effort to put their blindness in perspective. “Both my husband and I are very clear that we don’t want her to have any overly adult responsibilities. I don’t mind having her read something now and then if it’s to help the family . . . but I’m not going to give her the responsibility of reading bills or helping us write out checks or anything like that because I don’t want her to have to take on the role of parenting us, which sometimes can happen in families where parents are disabled. I don’t want to give her that much power, and I also don’t want to give her that much responsibility because she’s a child. She needs to understand that she’s a child.”
In addition to sharing her home with Michaela and her husband, there is a fourth member of the family, Suzanne’s guide dog, Fave. Suzanne has been a guide dog user since age 24 and Fave is her seventh canine partner. As someone who felt very confident in her cane skills, it was both daunting and exhilarating to pick up the dog’s harness for the first time. As to whether it is always preferable to use a dog over a cane, Suzanne demurs, explaining that there are advantages in both methods of travel. A cane furnishes a very detailed idea of one’s path, whereas a dog often enables one to walk more quickly and with attention to the “bigger picture.” “Really, it’s a question of what stage of life you’re at, what kind of travel you want to do, what responsibility you want to have . . . what you as a traveler prefer to know and know about. . . For me, at this stage of my life and the kind of traveling that I do, I like to have a dog. That may change down the line.”
If there is one thing Suzanne knows at this point, it is that needs and priorities change over time. And in spite of her difficult start in life and some of the more daunting challenges she has faced, Suzanne is convinced that blindness has also brought with it a number of pluses. “I think it’s important to find benefits in whatever your situation is because it’s obviously one that’s not going to change. . . There are down sides . . . For me, blindness has forced me to be a better advocate for myself and more assertive than I may have been otherwise. Also, it has made me creative in thinking of different ways to solve a problem or how to get out of a situation if, say, I don’t know where I am. How do I figure it out? It also applies to job scenarios where I have to . . . explain to a sighted potential employer how I would do a particular aspect of a job. . . It has also helped me to be confident when I’m really not underneath.” What advice would she give to others who are dealing with blindness and vision loss? “There are some things about it that aren’t great,” she elaborates. “The world isn’t set up for us, things are harder and I think it’s okay to acknowledge that and . . . to say that it takes extra energy to be blind and that it is more stressful. . . It’s fine and healthy to have a safe place where you can just say ‘Oh, this is hard.” But at the same time, we as blind people can’t let it keep us from doing the things that we’re meant to do and want to do in our lives. In most cases, there is more than one way to accomplish something and there is an incredible amount of support and a lot of role models who have already done most things. We don’t have to be pioneers anymore.”
Next month, part two of our series introduces you to Salmaan Kapadia, our extremely competent and talented web master and newsletter designer.