eJournal USA

III. Celebrating Contributions

In this section, as called upon by President George W. Bush in his proclamation, we celebrate some of the many contributions to society of individuals with disabilities.

Disability and Ability

CONTENTS
About This Issue
Presidential Proclamation on the 16th Anniversary of the Americans with Disabilities Act
U.S. Society and Laws Protect the Rights of Persons with Disabilities
Securing Access for People with Disabilities: A Community Affair
Playgrounds Photo Gallery photo icon
Hiring People With Disabilities: Good For Business
American Indians and Disability: Montana's AIDTAC Program
Building on the Progress
Building on the Progress Photo Gallery photo icon
Celebrating Contributions
Video Feature video feature icon
Disability and Ability
Bibliography
Internet Resources
Download Adobe Acrobat (PDF) version
 
Profiles

Mattie J. T. Stepanek, Poet
Chandley McDonald

A child with muscular dystrophy inspired millions with his poetry and his courage. Chandley McDonald is a writer for the U.S. Department of State in the Bureau of International Information Programs.

Heartsongs figure a lot in Mattie Stepanek's poetry. As he described it, "Your heartsong is your inner beauty. It's the song in your heart that wants you to help make yourself a better person, and to help other people do the same. Everybody has one."

The young hero, who battled a rare form of muscular dystrophy for 13 years, was able to write inspirational poetry and essays, publish books, speak with his heroes, and lead a full life. Mattie succumbed to his illness in June 2004, but not without leaving a legacy of an exemplary life and wisdom far beyond his age.

 Pictured here at age 11, Mattie and his mother, Jeni, enjoy his latest book of poetry
Pictured here at age 11, Mattie and his mother, Jeni, enjoy his latest book of poetry.
© AP Images/Matt Houston

Mattie's illness, dysautonomic mitochondrial myopathy, left him with impaired automatic functions—breathing, heart rate, blood pressure, body temperature, digestion, and utilization of oxygen. He attended public school until age nine, when the condition worsened and he had to use a wheelchair and have medical assistance with his normal day-to-day living. Even so, Mattie managed to travel, to read extensively, to produce his poetry, to collect rocks, and to become a spokesperson for muscular dystrophy. Among his honors were becoming National Goodwill Ambassador for MDA (Muscular Dystrophy Association) and a volunteer for a fantasy trip sponsored by United Airlines and Children's Hospice International.

As a champion for peace and global tolerance, Mattie appeared on many television programs, where he was interviewed by famous hosts. He even got to introduce his hero, former President Jimmy Carter, at the Kennedy Center in Washington, D.C. As an inspiration to people around the world, Mattie's message reached individuals of all ages, races, nationalities, faiths, abilities, and aspirations.

"People tell me I inspire them. And that inspires me. It's a beautiful circle, and we all go around together, with and for each other. What a gift." This quote comes directly from the extraordinary heartsong of Mattie Stepanek.

Angela Rockwood-Nguyen: Helping Others Go Forward
Chandley McDonald

A young victim of spinal cord injury helps others in her situation through the foundation that helped her.

In 2001, just two months before her wedding to Dustin Nguyen, Angela Rockwood, then an aspiring model and actress, suffered a spinal cord injury in a car accident. She remembers waking up in the hospital thinking that this was the end of the world. In a real sense, her world as she knew it, was changed forever. "Changed," she says, "from being a fitness enthusiast and an aspiring actress, I had been transported into the realm of the paralyzed: a C4-5 quadriplegic." (C4-5 indicates the location of her injury; in this case, her neck.)

At the time, Angela quickly assessed her situation and knew that even though she could be disabled all her life, she was ready to accept it and go forward.

"Go Forward" is the motto of the foundation established by former movie star Christopher Reeve, whose film roles included Superman. Reeve was paralyzed in a horseback riding accident in 1995. He and his wife Dana lent their names to the American Paralysis Association shortly after his accident. The organization ultimately became known as the Christopher and Dana Reeve Paralysis Resource Center (PRC).

Angela, (center) is pictured with (right to left) her husband, Dustin; Kathy Lewis, president and chief executive officer of the Christopher Reeve Foundation; and Dana Reeve
Angela, (center) is pictured with (right to left) her husband, Dustin; Kathy Lewis, president and chief executive officer of the Christopher Reeve Foundation; and Dana Reeve, who died in 2006, two years after her husband.
Courtesy of the Christopher Reeve Foundation

 Christopher Reeve
Christopher Reeve
© AP Images/Andy King

Following Rockwood-Nguyen's accident, she received an enormous amount of support and assistance from Reeve's foundation. Even today, she says, the foundation is there to provide her with information and resources that she needs to live a healthy and productive life.

Rockwood-Nguyen and her husband, Dustin, an Asian-American actor, are spokespeople for the Paralysis Resource Center's Minority Outreach Campaign. They are encouraging others to "Go Forward," just as the Reeves envisioned.

"Shortly after my accident, in the midst of therapy, I learned of the PRC and can vouch for the level of support they were able to provide—that there are people who can get you the information you need in desperate and confusing times. There are so many paras and quads [paraplegic and quadriplegic people] who can use the help—especially in the Asian-American community—and I plan to do everything I can to get them to do so," Rockwood-Nguyen says.

And there is hope for the future for paralysis patients. The Paralysis Resource Center reports, "Today, our belief in a cure is shared by the neuroscientists, researchers, clinicians, and, perhaps most importantly, thousands of people living with spinal cord injuries and their families."

Rachael Scdoris, Competitive Musher
Chandley McDonald

 Rachael Scdoris and her dogsled team compete in a preliminary race in 2004
Rachael Scdoris and her dogsled team compete in a preliminary race in 2004.
© AP Images/Duluth News Tribune, Amanda Odeski

A 20-year-old woman from the state of Oregon became the first blind competitor in the Iditarod Trail Sled Dog Race in 2006.

It is really hard to imagine. Think about bracing yourself against the cold of minus 52 degrees Fahrenheit (minus 46.7 Celsius), enduring 12 days of unrelenting wind, and racing across more than 1,110 miles (1,776 km) of difficult Alaskan wilderness. Competitive "mushing," piloting a sled and 12 to 17 sled dogs in the Iditarod Trail Sled Dog Race, is the realization of Rachael Scdoris's lifetime dream, even though she has been legally blind since birth. The 20-year-old woman from Oregon is the first blind musher to compete in the Iditarod. Scdoris and her visual interpreter, Tim Osmar, finished in 56th and 57th places in the Alaskan race in March 2006. An Iditarod veteran, Osmar drove his dog team in front of Scdoris, operating as her "eyes," alerting her to trail conditions during the race. They communicated by two-way radio.

The Iditarod is sometimes called "the last great race on earth." Every year since the competition began in 1973, the race has begun in Anchorage, Alaska, during the first weekend in March. Each team of dogs and their mushers cover the distance across Alaska to Nome in approximately nine to 17 days. Scdoris and Osmar finished the race in 12 days, 11 hours, and 42 minutes. Finishing and placing in 2006 was particularly gratifying for Rachael. In 2005, she had to drop out after completing more than half of the race, because some of her dogs became ill.

Scdoris's condition is called congenital achromatopsia, a rare vision disorder. She is colorblind, and her condition makes her extremely sensitive to light. Congenital achromatopsia is a hereditary disorder that affects one person in 33,000 in the United States; the condition generally is stable over the course of a person's life. The incidence of congenital achromatopsia varies in different parts of the world. Many achromats can function normally with the aid of darkened glasses, while others use guide dogs or canes and are considered legally blind.

Even though she is visually impaired, Scdoris has not let this stand in the way of challenges. "It has been my plan to race the Iditarod since I was eight years old, as it is the biggest and most prestigious sled dog race in the world," says Scdoris, who started mushing when she was three years old. As a student in Oregon, she was captain of her high school track and cross-country teams. Voted one of the top women athletes in America by the Women's Sports Foundation in New York City, she had the honor of carrying the Olympic Torch to the Salt Lake City Winter Olympics in 2002. Now, Scdoris divides her time between competitions and working as a sled dog tour operator.

Michael Naranjo, Sculptor
Chandley McDonald

A blind sculptor creates and shares touchable art.

Please touch! Please touch these beautiful bronze statues. This uncommon invitation was made by the Heard Museum in Phoenix, Arizona. The exhibit is a collection of statues created by Michael Naranjo, a New Mexico native who was blinded as a soldier in Vietnam. His inspiration is nature and what art he remembers seeing in galleries growing up in his hometown of Taos, New Mexico.

Michael Naranjo was born in the Santa Clara Pueblo with nine siblings, many of whom are practicing potters. His mother, Rose, was a celebrated ceramic artist who taught her children and grandchildren the art of pottery. For Naranjo, learning to make things from clay was a natural outgrowth of his artistic spirit.

After returning from Vietnam, Naranjo attended the California School for the Blind. He returned to Santa Fe, New Mexico, where he began the challenge of trying to sculpt without having sight and with greatly reduced use of his right hand, which also had been injured. He married and set to work learning his craft, while he and his wife raised two daughters.

Working with intuition and touch, his art began to emerge, to flow with composition, balance, and movement. Naranjo's style is simple; he uses his fingers and fingernails to etch the details in his sculptures. He does not use traditional sculpting tools since he cannot see what impact the tool has on the clay. Understandably, Naranjo will scrap a piece of work if its "feel" isn't right. Laurie, his wife of 27 years, sometimes has to rescue his work before he destroys it in his quest for perfection.

Sculptor Michael Naranjo explores Michelangelo's masterpiece
Sculptor Michael Naranjo explores Michelangelo's masterpiece.
© Terry Ketler, courtesy of Michael and Laurie Naranjo

 Naranjo and one of his own sculptures
Naranjo and one of his own sculptures.
© Jim Hall, courtesy of Michael and Laurie Naranjo

An interesting aspect of Michael Naranjo's sculpture is that over the last 30 years, his sense of touch has been refined by contact with the masters. The Academy Gallery in Florence, Italy, and the Louvre in Paris allowed him to examine their treasures-—in Paris, the Medici Venus, and in Florence, Michelangelo's David. The authorities granted the rare privilege of allowing him to observe the masterpieces by touching them. By touch, Naranjo was able to observe minute details of the statues, such as the fact that in the eyes of Michelangelo's statue, the pupils are shaped like hearts. But while he observes the eyes of others' work, his own statues never have eyes, something it takes a while to realize as one appreciates the many other aspects of his work.

Through the traveling exhibit of his touchable art, organized by the Heard Museum, Naranjo seeks to share with others what he views as an opportunity for transformation through direct contact with art. He and his wife have established the Touched by Art Fund, a Santa Fe community foundation to enable public school students in New Mexico to visit museums and galleries. The gallery that currently carries Naranjo's work is the Nedra Matteucci Gallery in Santa Fe. The gallery's Web site is http://www.matteucci.com.

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