Independence drive

If there is one thing Big Island mom Pauline Victoria Aughe values most, it’s her independence. She home-schools her 9-year-old son, Aaron, and until recently chauffeured him to aikido and soccer and drove from the family’s Puna home to Hilo and Kona to advocate for the disabled.

Aughe, 39, did this despite a rare birth defect: She was born without arms or legs.

For ten years, she has been able to drive on her own using a computerized van. She’s able to buckle her seat belt and operate the vehicle with the help of a mouthstick.

"There are tons of people with disabilities who don’t even know that they can drive," Aughe said by phone while visiting family in San Jose, Calif. "There are a lot of inequities that are still occurring. I would like to be a bridge of awareness."

As an appointee to the Governor’s Disability Communications Access Board on Oahu, Aughe has been active in the parking program for the disabled and on other issues relating to civil rights and access, said Francine Wai, executive director of the state agency, whose mission is to promote equal access and independence for individuals with disabilities.

"Pauline comes with both personal and professional perspective," Wai added.

Aughe’s own independence took a blow in November when the computer system in her specially equipped Dodge Caravan malfunctioned and she had to stop driving. She contacted the manufacturer, EMC, and learned the Maine-based company does not repair systems that, like hers, are more than 10 years old. A new customized van would cost $150,000, which Aughe said her family cannot afford.

Her customized vehicle was paid for by the California Department of Vocational Rehabilitation while she was living and working in Silicon Valley. In 2006 she and her husband, Ted Aughe, shipped the van over when they moved to the Big Island. The Hawaii Division of Vocational Rehabilitation does not purchase customized vehicles, but does support the purchase, repair and installation of adaptive systems for vehicles owned by disabled people who are eligible for the services. Because she works at home, Aughe said she believes she is not eligible, so she has not sought state assistance.

Friends suggested crowdfunding online. Launched May 30, the Freedom Van for Pauline campaign has raised nearly $19,000. (For more information and a video of Aughe driving her old van, go to gofundme.com/k6wxv4.)

"When I’m with Pauline I don’t think about disabilities," said Hannah Bader, who met Aughe five years ago on a park date for home-schooling families. "Once, talking about the time it took Pauline to get ready, one of my sons asked, ‘Doesn’t she just blow-dry her hair?’ He’d forgotten she was armless."

Another time, seeing a young man without one arm, Bader’s middle son said, "Auntie Pauline would love to have one arm," Bader recalled. "Pauline makes you see what people have, not what they’re missing."

Aughe said she has missed not knowing others with her rare disability, that "someone with whom you can really say ‘me, too’ and feel connected and understood."

In the fifth grade, after succeeding in mainstream education programs, she was placed in a school where she was the only disabled child.

"The roughest time in my life was junior high. Most teenagers desire acceptance and blending in, something I couldn’t do." She attributes her happy and confident nature to her parents, who gave her "the tools and resources to succeed on my own," and her all-girl Catholic high school, where "we felt we were valued by who we were on the inside."

Aughe, who is Fili­pino-German, went on to graduate from Santa Clara University and met her husband while riding as a passenger in a van for the disabled that he drove.

During their honeymoon in Kona, chosen because Pauline Aughe’s two closest college friends were from Hawaii, Ted Aughe fell in love with the Big Island and insisted they move there. "He’s the spontaneous one," Aughe said.

In December, shortly after Aughe stopped driving, her husband fell ill with rat lungworm disease, commonly spread by eating contaminated produce. Still recuperating, he has left his job as general manager of Y. Hata & Co. Ltd. in Hilo.

"When people ask why don’t I just let Ted drive me now, I say I nearly lost him and that was my wake-up call: I have to empower myself to be independent to care for myself and our son."

Aughe said she now finds it easier to attend meetings on Oahu than on the Big Island, where Handi-Vans and other forms of transit for people with impaired mobility are not available. But the situation is improving: The Hawaii Island Mayor’s Committee for People With Disabilities, on which she serves, "just got the first disabled-acceptable taxi on the Big Island a month ago," she said with pride.

She also serves on the board of Full Life Hawaii, a nonprofit organization that holds an annual Abled Hawaii Artists Festival, to be held Saturday in Kona.

Aughe is starting her own nonprofit organization, the Pauline Victoria Foundation, to provide resources for adults with disabilities to get the tools they need in order to become independent.