[NFBMT] Blindness Can't Stop Me from Living the Life I Want to Live

Sat Sep 15 00:38:33 UTC 2018

Blindness Can't Stop Me from Living the Life I Want to Live

"I can do just about anything except drive, and there's Uber for that."

By Peg Rosen  

Sep 14, 2018 

If all goes as planned, Las Vegas mom Terri Rupp will cross the finish line
of her first marathon in November with LED lights braided into her hair and
her family cheering her on. It will be a remarkable accomplishment, but not
for the usual reasons. Terri, 35, literally can't see where her feet are
taking her.

"Running is my Zen," says Terri, who trains and races while tethered to the
wrist of a buddy from the support group Achilles Las Vegas. "It lets me push
my limits. It shows me and my kids that my blindness doesn't stop me from
living the life I want to live."

"We work so well as a family unit," says Terri, here with husband Aaron,
daughter Marley and son Jackson on a hike.

Aaron Rupp, photographer and other blogger in the family.
www.theseedproject.net 

Diagnosed at around age 5 with optic nerve atrophy, an incurable and often
progressive disease that damages the nerve connecting the eyes to the brain,
Terri doesn't just defy conventional images of blindness. She smashes them to
smithereens.

She's the married mom of two grade-schoolers, president of the National
Federation of the Blind of Nevada and a dedicated camper who navigates the
woods with a long white cane. "I can do just about anything except drive,"
she says. "And there's Uber for that."

Terri makes it all seem easy, although her journey has been anything but. In
fact, her experience - struggling for years to "pass" with what little vision
she had and frustrated by the world's low expectations for her - drives her
to help empower others like her. 

"Disability doesn't define us," she says. "What defines us is how we live our
lives."

Blindness is more feared than the loss of memory, speech, hearing or a limb,
research shows, but it is also misunderstood. Only a small percentage of the
estimated 1 million people in the U.S. identified as blind have no vision
whatsoever, according to the National Federation of the Blind (NFB). Instead,
most live a fuzzy middle, a gradual mash of blurs and contrasts, that Terri
inhabits.

"I can see shades of dark and light, vague shapes, and I can tell if
something is moving. But there's no detail," says Terri. She can sense the
roundness of her daughter Marley's face, for instance, but can't make out her
dainty features; can perceive the brightness of a favorite running top, but
not its color. Over the years, Terri has developed ingenious work-arounds. 

"When Marley started to walk, she would get into hard-to-find places," says
Terri. The solution: "She wore bells or squeakers on her shoes." Terri also
pinned tops and bottoms together before washing so she knew her daughter's
clothes would match.

But even though she has a tiny degree of vision, Terri is comfortable
identifying herself as blind. "Saying I have low vision or I'm vision
impaired implies that somehow I'm 'less than' or 'insufficient,'" she says. 

Only a small percentage of the estimated 1 million people in the U.S.
identified as blind have no vision whatsoever.

Terri's life today is a far cry from her childhood in an enclave of Cambodian
refugees near Stockton, CA. "Disability was a stigma in our culture," says
Terri. She didn't even know her disease had a name until she was in high
school. "When people asked about me, my parents would say, 'Terri? She just
doesn't see very well.'"

By the time she was diagnosed, Terri was in kindergarten and her sight was
slipping. As is often the case with children like her, her school focused on
enhancing the vision she had instead of providing alternatives to it, most
crucially by teaching Braille.

"Many parents see Braille as a surrender," says Terri. And why bother with it
anyway, in this age of audiobooks and smartphone apps that can read
everything from a wine label to a school worksheet? "You can't learn syntax,
spelling or punctuation just from listening," says Stacy Cervenka, chair of
the NFB's Blind Parents Group. "If your writing is a mess, if you're
basically illiterate, it's going to be very tough getting a job." The sad
proof: Seventy percent of blind Americans are unemployed - but of those who
do work, 85% are Braille-literate, according to the NFB. Currently, a paltry
8.5% of the 60,400 blind students in the U.S. are Braille readers.

"I never felt I was good enough, fast enough, smart enough," she says. "I
struggle constantly with self-worth because of what I went through."

In school, she could barely read the worksheets teachers blew up into
ever-larger print. "I filled in the blanks with random words because I didn't
want to seem ungrateful," she says. She wept behind Coke-bottle-thick glasses
because they did little to help. "A boy asked me why I read with my face
right up in my books," she recalls. "I started holding them farther away and
not really reading."

Faking it became Terri's secret strategy as she battled her way through high
school and college. She brought schoolwork back to the apartment she shared
with her sister, enlarging it on a special closed-circuit TV and working all
night to complete it. But by her junior year, Terri was quietly failing all
her classes but one.

She downplayed her disability socially too, even with the man who became her
husband. Aaron, 36, met Terri while he was studying to be a paramedic. He
knew she couldn't see well and thought it was sweet that she held on to him
while they walked together. She didn't drive, but that wasn't unusual in
their city. Then one day he opened Terri's bedroom closet and discovered
something shocking: a folding white can she had secretly started using while
traveling to campus on her own.

"I fell in love with her before I knew she was blind," says Aaron. Terri
wasn't ready to talk about it, but he was okay with waiting - they both knew
the relationship was serious.

In January 2005, Terri left school and took an important step toward
accepting her blindness, working as a receptionist at the Society for the
Blind in Sacramento. There she found confident officemates openly navigating
the world with white canes that were light-years beyond hers: feather-weight
and exquisitely sensitive slivers of aluminum, carbon fiber or fiberglass
that sent a constant flow of information as they swept the ground. These
canes warned of toys on the floor, curbs and the slightest dip or rise. The
metal tips also helped their users echolocate, telegraphing with a subtly
changing "tap tap tap" the size of a room or the closeness of a wall. Bright
white, often with a red tip, they sent a clear message: "Make way for me. I
am blind!"

"There I was, still using this heavy, awkward cane, literally folding up my
blindness and hiding it," says Terri. 

She found her answer a few months later at an NFB convention. There she was
blown away when she encountered hundreds of blind people "living their lives
the way they wanted to," she says. She marveled at how they sized up
souvenirs by smell and touch and asked waiters to read menus aloud. "I had no
idea I was entitled to do that," says Terri. "Finally, I wasn't limited to
asking for a Caesar salad."

Many people she met there had attended the Louisiana Center for the Blind in
Ruston, LA, a preeminent training center. Its nine-month bootcamp requires
students to wear eyeshades that block all vision, so there is no choice but
to navigate by alternative means. Classes immerse them in positive blindness
philosophy, and they learn cane travel with the intensity of fighter pilots.
Braille and accessible phone and computer tech become second nature. They
must even pass wood shop, complete with table saws and electric drills, to
graduate.

By the time Terri arrived home from the convention, she'd made up her mind.
"I've shoved a part of myself aside for too long," she told her parents and
Aaron. Three months later, she was on a plane to Louisiana. Terri graduated
from the program in 2006, moved in with Aaron, reenrolled in college and
relaunched her life.

We knew she'd be okay. Because I'm blind and I'm okay.

Today she oversees her kids' homework, marches them to the park, whips up
dinner and manages NFB business from home. But Terri accepts support when she
needs it. From her parents, who moved nearby two years ago after selling
their donut shop. From Aaron, who reads cooking instructions and fills out
forms. From her son, Jackson, 7, who tracks down missing flip-flops. Even
from the sales staff at Old Navy, whom she'll ask, "Do these shorts make my
butt look fat?"

Above all, she is locked soul-to-soul with Marley, who was diagnosed at age 4
with the same form of blindness Terri has. (Jackson is fully sighted.) For
years, Terri had suspected the truth, despite doctors' assurances. "When they
told us, I cried with relief," says Terri. "Finally, no more false hopes.
Marley would be blind. But we knew she'd be okay. Because I'm blind and I'm
okay."

Now age 8, Marley is a blossoming Braille reader, a fearless self-advocate
and, yes, a runner too. "Running makes me feel free, like I can fly," says
Marley. And with Terri as her mom, there's no doubt she will.

This story originally appeared in the October 2018 issue of Good
Housekeeping.

Joy Breslauer, President

National Federation of the Blind of Montana 

Web Site: http://www.nfbofmt.org <http://www.nfbofmt.org/> 

Live the life you want

The National Federation of the Blind is a community of members and friends
who believe in the hopes and dreams of the nation's blind. Every day we work
together to help blind people live the lives they want. 