Braille Monitor June 2004
(back) (next) (contents)Eddie and Maria Bell Have Adjusted Gracefully to Life--and Parenthood--without Sight
by Sarah Rozeboom
Using their white canes, Eddie and Maria Bell go for a walk with daughter Victoria between them.
From the Editor: The following feature appeared in the February 29, 2004, edition of the Northwest Arkansas Times. Eddie and Maria Bell are Federation leaders wherever they go. Both were NFB scholarship winners, and even Victoria is an experienced conventioneer. They agreed to do this interview as a favor to a friend. It is a fine example of the way we can often educate a reporter while providing the story he or she has come for. Here is the story:
Each month during the first year of Victoria Bell's life, her mother, Maria, took her to JC Penney to have her portrait made. Some of those images of the auburn‑haired little girl with huge dark eyes, along with a few photographs taken by Maria herself, have been hung with pride upon the walls of the family's home. Others are tucked securely into albums or placed in piles awaiting frames.
Neither Maria nor her husband, Eddie, has ever seen any of them. Both of the older Bells are blind; Victoria, who turns two on March 9, is not. Eddie and Maria believe their daughter senses something is different about her parents, but they don't think she's old enough yet to comprehend that difference. "With other people she can catch their eyes across a room and smile," Maria said. "We can't have that spontaneous interaction with her." But the couple does read books to Victoria. They go for walks. They play in the snow. They watch Finding Nemo together, a lot. Some have called the Bells' decision to have Victoria courageous. Others have thought a blind couple incapable of raising a child. Still others have assumed Victoria was born to help her parents when she gets older. But Eddie and Maria say none of these is correct.
Theirs is the story of a family that is normal--or, as Maria puts it, "unremarkable, really."
Twists of Fate
Originally from California, the fifth of her family's six children, Maria was born with a degenerative condition called retinitis pigmentosa. The disease affected none of her siblings. As a child Maria could see almost perfectly. But as the years went by, her sight faded in stages. First she experienced night blindness, followed by loss of peripheral vision. Then she lost the ability to see colors. Eventually dark patches dotted the images she saw, such that her brain automatically filled in the voids and enabled her to "see" whole objects.
At age eighteen, Maria's vision was poor enough that she began using a cane. She was embarrassed at first and used one that collapsed discreetly into her purse. But she began overcoming her embarrassment as she discovered the cane went a long way toward explaining little mistakes she made from time to time, such as going into the men's restroom at a public place or ignoring a cashier holding out a handful of change. By age twenty-two, the rest of Maria's residual vision had disappeared. "It was almost a relief to stop having to adjust," she said. "The process of having it go was more frustrating than it being gone."
Undaunted, she earned a bachelor's degree in social work and went on to get her master's in special education to work with the blind. In 1993 she was working at a rehabilitation center for the blind in Alamogordo, New Mexico, when she met her future husband. Eddie Bell was raised the youngest of four children in Albuquerque, New Mexico. He was seventeen, with a fairly new driver's license in his wallet, when a drive-by shooting claimed his sight. Unlike Maria's progressive loss of vision, Eddie's happened in an instant. "I was absolutely devastated, depressed-‑suicidal," he said of the first few months after the accident. But then he was accepted into the Alamogordo training center.
"One of the first things that struck me was how happy and normal everyone at the center seemed," Eddie said. "And everyone there, even most of the teachers, was blind." One person in particular inspired him: Maria. After learning that she had visited Europe and done some other traveling, he assumed she was sighted. But then he discovered she was blind too, and his hopes for living a normal life increased. "A personal testimonial is much more powerful than anything you read in books," he said. Maria's influence helped Eddie get through college at California State University in San Marcos, where he earned a bachelor's degree in human development.
The pair then moved to Ruston, Louisiana, where Eddie earned his master's degree from Louisiana Tech University. They were married four years ago and stayed in Ruston for awhile, with Maria working for Louisiana Rehabilitation Services, a state agency that offers training to the blind with the goal of finding employment. Eddie worked at a private training center teaching cane navigation. When Eddie decided to pursue a doctorate in rehabilitation education and research, he chose the University of Arkansas. So in June 2001 the Bells made the move to Fayetteville. Three weeks after they arrived, Maria learned she was pregnant.
There was never a question in the Bells' minds that they could raise a child. Eddie and Maria are members of the National Federation of the Blind, a 50,000‑member organization for the blind and visually impaired, parents of blind children, and anyone else with an interest. Through attending NFB conferences in places such as Washington, D.C., and California, they have made numerous friendships. "We know lots of blind people with children, so we knew it could be done," Maria said. But despite their initial confidence, when Victoria arrived, the Bells reacted like any first-time parents would. "I was anxious but not because I'm blind," Maria said. "I was anxious because I was a new parent." One of her concerns was, should Victoria become sick, how would they give her medicine? The answer came from Maria's sister, who suggested they use an oral syringe. Scoring the syringe with a knife produced a tactile identifying mark so Eddie and Maria would know how far to fill it.
As their daughter became increasingly mobile, more safety issues arose. "When Victoria first started crawling, I would crawl around or walk barefoot to make sure there was nothing on the floor," Maria said. "I probably vacuum a lot more than other parents too." And when Victoria pushed a screen out of a low window in the living room last summer, Eddie installed a wooden lattice barrier in front of the screen. "Our house is probably better child-proofed than many sighted people's, because we don't assume we'll see everything," Maria said.
A typical day for the Bells begins at 6 a.m. or earlier, depending on how long Victoria has chosen to sleep. The family gets up and eats breakfast together. Eddie usually checks his email using a Microsoft program called JAWS [actually, of course, Freedom Scientific sells JAWS] that reads messages aloud. Then he catches a shuttle to his internship, where he spends twenty hours a week as a vocational rehabilitation counselor with the Department of Human Services, Division of Services for the Blind. Maria stays home with Victoria and takes care of the housework and errands. When the weather is nice, she puts Victoria in a backpack carrier and walks to the post office, bank, or pharmacy. If she needs to go grocery shopping or do other errands that require a car, the Bells have hired people to help them.
The helpers also aid Maria in going through the mail and ensuring that bills get paid on time. "Paying people gives us a little more control over the situation. They're more dependable, and they take it more seriously," Eddie said. "With volunteers we're at their mercy." Making grocery lists is accomplished using their Braille writer, a workhorse that resembles an old manual typewriter, Maria said.
Dinnertime is a chance for Eddie to show off his culinary skills. Before he lost his sight, he had begun helping his mother by doing some of the cooking. After the accident, cooking was one of the first activities he returned to. To identify various spices or canned goods, the Bells create labels using labelmaker tape and tools called a slate and stylus. The slate, made of metal, contains holes arranged to form the Braille alphabet. It serves as a guide as the stylus is used to push dots down onto the label tape. Then the labels are stuck onto the cans. Eddie also enjoys barbecuing. He can tell when the meat is done by judging its texture and how long it's been on the grill. He even has a talking meat thermometer--though he's used it only once.
In the evenings the family often watches TV or a movie or reads with Victoria. They have an impressive video collection including Chicago, Forrest Gump, Harry Potter, A Few Good Men, Ice Age-‑and of course Finding Nemo. Maria said they usually don't have difficulty following movie plots, but for more action-oriented stories, Descriptive Videos are available that narrate the goings-on in between dialogue. The books they read to Victoria are kid-friendly with colorful pictures and large words; they also contain Braille writing. Some books they've ordered; others they've translated into Braille themselves using the slate and stylus and clear adhesive plastic.
Eddie and Maria liken learning Braille to learning a foreign language as an adult. They can't read it as quickly as they could read words before they lost their sight. But Victoria's godmother, who has been blind since age three, can read up to 400 words per minute. The Bells say there are times when they're saddened at missing Victoria's first smile, first step, or any of those other firsts that sighted parents are privy to. But they don't dwell on the negatives. "I still get frustrated, tired of being blind. There are times when I think, 'Gosh, I wish I could see that,'" Eddie said. "It's disappointing, but not devastating. It doesn't diminish our lives."
Instead of focusing on what they're missing, the Bells concentrate on ways to make the most of every opportunity. For example, Maria rarely lets a photo op pass her by. When a snowstorm hit last year, she was determined to take pictures of Victoria playing in snow for the first time. She considered asking a friend to take the shots, but decided it might take too long to track someone down. "I thought, `By golly, I am not going to miss this chance,'" Maria said. "And I got my little girl playing in the snow." Sure enough, she did. After the Bells have a roll of film developed, they ask friends to help them sort through the snapshots and tell them which ones are keepers. The picture of Victoria in the snow is now ensconced in one of the family's albums.
Eddie recently gave Maria a gadget called a color identifier. Holding it against a piece of clothing or other object produces an automated voice announcing in a British accent such detailed descriptions as "dark gray‑purple." There are some color identifiers that recognize 1,700 colors, Maria said, but theirs isn't quite that sophisticated. Maria intends to use it to sort colored construction paper for art projects with Victoria when she's a little older.
The Bells say that though they have adversity in their lives, their situation is no more difficult than the ones facing other people with setbacks, whether physical or emotional. "Everyone has their own set of circumstances," Maria said. "It's easier for us to raise a child than for a single mother. I can tell Eddie, `Here you go. I'm going to take a long bubble bath.' Single mothers don't have that luxury."
Making a Point
As evidenced by their education and career choices, both Eddie and Maria are committed to helping the blind and visually impaired live normal, productive lives. They're also concerned with dispelling stereotypes. While they acknowledge that some blind people do become charity cases, the Bells live their own lives as independently and actively as possible. "We don't lie in bed in the morning and think, `Now how am I going to measure out the water for the coffee pot?' Most things don't take us an inordinate amount of time or extra energy. We don't think of ourselves as disabled. And we don't feel people's faces and do all that goofy stuff!" Maria said with a laugh.
The Bells are active members at St. Joseph's Catholic Church. They stay on top of world and national events, and they always vote. Eddie is currently involved in a project with the Iowa Department for the Blind. The department contacted him last summer to help build a mentoring program that matches newly blind people ages sixteen to twenty-six with older blind or visually impaired mentors. "It's kind of neat for me to get in on the ground floor of the project," Eddie said.
At a recent speaking engagement at a local shelter for troubled teens, one of the kids asked Eddie what he would ask for if he could have one wish. He didn't wish for his sight to return. "I wished for happiness for my daughter," Eddie said. "Like any parent, I wished happiness and safety and for her to grow up and become a productive member of society."
(back) (next) (contents)