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 Eddie
and Maria Bell Have Adjusted Gracefully to Life — and Parenthood
— Without Sight
by Sarah Rozeboom, Northwest Arkansas Times, February 29,
2004
For more articles like this
visit
https://www.bridges4kids.org.
"A few years back, I was assisting a family in Texas who had
a teenage daughter who became blind within about a three day
span due to medical complications from an infectious disease. By
the grace of the universe, Eddie Bell was in town and available
to work with the young woman and her family on a one to one
basis. We were all so thankful for his expertise, patience and
kindness. Sharing his very similar experience and positive
attitude about blindness (including the information of the
journey that led him to that positive attitude) made all the
difference in the world for the young woman who has moved on in
her life with courage and grace. Thought the following article
might be of interest to some of you too…" - Brunhilde Merk-Adam,
Parents of Blind Children of Michigan
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 2 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 18, 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 22,
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, N. M., when she met her
future husband. Eddie Bell was raised the youngest of four
children in Albuquerque, N. M. He was 17, 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, La., where
Eddie earned his master’s degree from Louisiana Tech University.
They were married four years ago and stayed in Ruston for a
while, 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. Raising Victoria 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
e-mail using a Microsoft program called JAWS that reads
messages aloud. Then he catches a shuttle to his internship,
where he spends 20 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
label maker 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 3, 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 16 to 26
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."
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