Pauline Aughe got her driver’s license when she was 28. It took seven years to get to that point: four years working with a team in Los Angeles (Aughe grew up in the Bay Area) to figure out the best
Pauline Aughe got her driver’s license when she was 28. It took seven years to get to that point: four years working with a team in Los Angeles (Aughe grew up in the Bay Area) to figure out the best way to drive and to be approved for a vehicle, then three years learning to maneuver the white Dodge minivan equipped with a host of features — a joystick, headrest buttons, voice control — that allowed Aughe to drive on California’s freeways.
This in addition to the basics of driving: mirrors, turn signals, brakes, watching for other drivers not paying attention.
“I think once you’re driving for a while, you forget everything that goes into it,” Aughe, now 39, said. She passed her test on the first try, and remembers that the instructor was very nice but a little taken aback by how she drove the van.
Aughe was born without arms or legs. She’s used to living a workaround life, and to able-bodied people being surprised and impressed by how she does it.
That’s OK, she said, but “at the same time, I feel like we learn to navigate what we have.” Her parents always encouraged her to be independent, to “really figure out what I could do and what I was made of.”
“The options are you stay home and you feel like the victim — you don’t live a full life, and you’re always depressed,” Aughe said. “Or you say, ‘No, these are the circumstances, and I will get around.’”
There was one perk to not driving: Aughe’s husband, Ted, was a paratransit driver. They met when he drove her to a job interview at Stanford University. The couple honeymooned in Hawaii and moved here in 2006 with their son Aaron, 9. Aaron’s tiny footprints mark the concrete wheelchair-friendly ramp up to the front door of the Aughes’ Hawaiian Paradise Park home.
The white van, pool noodles and beach toys loaded in the back, is parked in the driveway. When its doors roll open and a wheelchair ramp slides out, the whirrs sound like a spaceship launching. But the van hasn’t gone very far in the past several months, not since its computer system started acting up and made it unsafe for Aughe to drive.
When she contacted the company about a fix, Aughe was told they would not provide replacements or repairs to any system more than 10 years old. There were two options: Stop driving altogether, or get a new van — at a cost of $150,000. She’d gotten the first van with help from California’s Department of Vocational Rehabilitation, but there was no guarantee Hawaii’s DVR would be able to do the same.
At first, Aughe thought that she and her family could handle the challenge as they had so many others, but those weren’t equivalent to a new mortgage. Eventually, she opted for a crowdfunding campaign that to date has raised more than $24,000.
Earlier this summer, when the Aughes attended their friends’ wedding, they learned that the couple had requested donations to the campaign in lieu of gifts. But plenty of strangers have contributed, too, including one woman whose daughter was born missing part of her left arm.
“Glad to help another strong spirited and independent (woman),” the donor wrote. “You seem like a great role model.”
There weren’t disabled role models for Aughe when she was growing up, making ordinary things like being a teenager even more difficult than they already are.
“You don’t have that connection with someone to say, ‘Well, what about this, what about this, how did you deal with this — me too!’” Aughe said. “And that is important, that’s a need for all of us as humans.”
“I think a lot of the people I run into with disabilities are involved in the same kind of things I am, working for inclusion and access,” she said. “We’re united in trying to make things happen…not (just) supporting each other, but the entire community.”
Aughe is on the board of several disability nonprofits, is part of the Mayor’s Committee on Disability, and was nominated to the statewide Disability and Communication Access Board.
Back in California, she was the disability program navigator for the city of Sunnyvale. In addition to the nonprofit work, Aughe started her own business as an inspirational speaker, drawing on her personal experiences and her Catholic faith while preparing speeches.
“She is not only a self-advocate, but … she is the voice for people who are not able to speak, literally, and able to articulate (their) needs,” said Mar Ortaleza, coordinator for the Abled Hawaii Artists Festival, which Aughe has emceed for the past several years.
The festival is a way to raise awareness and help disabled artists gain exposure for their work. It takes place in July, the month the American with Disabilities Act was signed into law.
The ADA turns 25 this year. There have been tremendous advances in increasing access for disabled people, although there is still work to be done. It’s something Aughe is keenly aware of. The Big Island community is “amazing … very communal, very giving, very accepting,” she said, but the gap in resources, particularly compared to California’s many employment agencies and transportation services, is wide.
“Just being out in the community changes people’s ideas of what is possible,” Aughe said. “It changes the way people think.” When people see her driving Aaron to sports practice, or going to Starbucks, or shopping at Macy’s, they start asking questions. They want to know more.
“That’s how we learn,” Ortaleza said.
Eventually, Aughe would like to start a web TV series, producing videos that help knock down the invisible barriers disabled people face. She made a video recently demonstrating a stylus she uses to access her smartphone, figuring that many people, like her, had initially thought smart technology was inaccessible.
“If you can help people through a struggle to the other end faster, that’s a gift,” she said.
Shortly after she made the video, the stylus company received a huge order from a rehabilitation facility in New Mexico.
Aughe also experienced the power of Internet-as-catalyst when she started making videos of her speeches. She prefers to speak to live audiences (“There’s a chemistry that happens,” she explained), but videos are something evergreen, always available. And people around the world have responded.
“I’m able to communicate with someone in Italy or Ghana,” Aughe said. “That’s crazy to me. You’re not bound by your physical presence; you can be everywhere and anywhere.”
For more information or to donate to Pauline Aughe’s Freedom Van campaign, visit www.gofundme.com/k6wxv4.
Email Ivy Ashe at iashe@hawaiitribune-herald.com.
