The father, mother or child of invention

Personal experience can drive scholars to push the boundaries in their chosen field, writes Jon Marcus

December 6, 2012

Source: Ken Bennett/Wake Forest University

Verbal victories: the computer scientist Paúl Pauca with his son Victor, who has a genetic disorder that limits speech and movement and who has lent his name to a communication app Pauca developed

Paúl Pauca has the kind of nondescript office one might expect from a professor of computer science.

His three degrees hang on the cinder-block wall above the bicycle he uses to commute to his job at Wake Forest University in North Carolina. Not one but two computer monitors rise from an otherwise bare desktop. Shelves of books reach to the ceiling.

But on a space cleared away in the middle of those complex texts is a spot of colour: photographs of Pauca’s children, including his six-year-old son Victor.

It is Victor who has provided renewed inspiration for Pauca’s work. Born with a rare genetic disorder called Pitt-Hopkins syndrome, which limits language and movement, the boy was dependent on bulky and expensive communication devices that often broke down.

So Pauca and his students, who were introduced to Victor and other children with disabilities at his special school, set to work using their skills to develop a smartphone app that cheaply and efficiently allows people with speech problems to communicate. They named it Verbal Victor.

“You don’t think about things like this if you haven’t had experience with the disabled,” Pauca says. Academic researchers “typically go to conferences [and] present papers. But working on Verbal Victor has been different. It’s more palpable.”

Although he has now set up a company to develop technology for people with speech disabilities, Pauca is one of many academic researchers whose work is not about profit. It’s not about getting published or promoted, or becoming famous. It’s personal.

“Every time I hear a statistic that something is going well, it’s a very personal experience,” says Beth Mancini, associate dean of nursing at the University of Texas at Arlington, whose work improving basic life support and cardiopulmonary resuscitation was inspired by the deaths of both of her parents from cardiac conditions. “It’s one for my mother and father, in honour of them.”

When she was 16, she found her father unconscious. His heart had stopped, and she could not revive him. Her mother died a year later after cardiac surgery. Today, Mancini works with the International Liaison Committee on Resuscitation, which sets standards for how people are taught to provide basic life support, and in the area of communication among medical professionals in hospitals.

“People say, ‘You’re so passionate about it. Why are you so passionate?’,” Mancini recounts. “And this is why I’m so passionate about it.”

Lifelong quest

It was also a childhood trauma that set Emory University ethnobotanist Cassandra Quave on a lifelong quest to fight infections caused by Staphylococcus aureus bacteria, such as MRSA, using traditional plant remedies. Born with skeletal defects, when she was three she underwent an amputation of her right leg below the knee to improve mobility. But an ugly post-surgery Staph infection meant that more of her leg had to be removed.

“It’s not just a project handed down to me by an adviser,” Quave says. “It’s something I’ve built on from an early age.”

Her experience makes it easier for her to relate to people who are suffering from illness, Quave says - more effectively, she believes, than clinical researchers who tend to have a disease-management, rather than patient-centred, approach.

“We’re shaped by our personal experiences, and I feel a real empathy for patients who suffer from these horrific infections because it really affected my life,” Quave says. “I’m easy for them to connect with because I’m not this perfect human being. I walk with a limp and have an artificial leg and scars. I’m very open about that. It’s a part of who I am.”

Quave has received a five-year, $1.8 million (£1.1 million) grant from the US National Institutes of Health to see if an extract from a tree found in European forests might help to fight the disease that took a part of her leg. She has a patent for another promising plant extract, and a second pending, and has co-founded a bioventure start-up company.

“You almost need that personal drive to do work like this because it’s not easy - more so than just saying, ‘Can I get some papers out of this?’,” she says.

Like Quave, Yvonne Ng, professor of computer science and engineering at St Catherine University in Minnesota, lost part of a leg as a child owing to a birth defect.

She became an engineer, she says, to make prosthetics more comfortable, and has since patented a prosthetic leg that can be used for scuba-diving. “The personal aspect (of my work) is intense,” she says.

Now Ng is helping to bring engineering education to younger schoolchildren - especially to girls who, research suggests, have often decided against careers in engineering before the age of 10.

“I started to realise it was sort of a miracle I became an engineer,” she says. “So many more people, especially women and girls, would love to do this. So if I can influence teachers to let children and girls know early on that they can be engineers, they may take the same route that I have.”

In 2005, Shuanglin Zhang, a mathematics professor at Michigan Technological University who specialises in statistical genetics, was diagnosed with amyotrophic lateral sclerosis, a disease of the spinal cord and nerve cells that controls voluntary muscle movement. The diagnosis prompted him to begin working to track down the genes associated with the debilitating disease. He has led a team of mathematicians that has linked three genes to the most common form of ALS, providing a potential step towards a cure.

Now largely immobilised, he continues to work on his research, and he communicates with his wife and research partner, Qiuying Sha, a fellow mathematics professor at Michigan Tech, by blinking.

‘It has become a calling’

Gregory Abowd, a professor of interactive computing at the Georgia Institute of Technology, started the Autism Research Group there after two of his three children were diagnosed with autism. “It has become a calling,” he says.

Among other things, the Georgia Tech group has developed gaze-tracking eyeglasses to measure eye contact, which can help with the diagnosis of autism in children at a younger age than is currently common. It is also working on using technology to monitor developmental milestones - which are also used as tests for autism - using such devices as wireless sensors in toys.

And after losing a close relative to cancer, Thomas Webster, chair of chemical engineering at Northeastern University, turned his attention to nanomaterials that could be used to lessen cancer cell function without the use of pharmaceutical agents.

Aside from illness, other personal experiences can ignite an enthusiasm for a particular field of academic research.

DePaul University associate professor of accountancy Kelly Pope recalls watching, as a teenager, a neighbour being arrested for embezzling millions of dollars from a bank. Her interest was piqued and she has since become an expert in white-collar crime, interviewing white-collar felons and producing an award-winning documentary called Crossing the Line: Ordinary People Committing Extraordinary Crimes.

“Little did I know that I was learning about white-collar crime at the age of 15,” Pope says.

When her life was threatened after she disclosed wrongdoing in a company where she worked, Judi Neal, now a professor at the University of Arkansas, turned her attention to the topic of faith and spirituality in the workplace. She has recently co-written a book, The Spirit of Project Management, about how what she calls value-centred companies motivate employees to act ethically.

Some of these academics believe that their personal experiences rub off on their students, too. “I’m a very different instructor than what they’re used to,” says Quave. “People tell me I’m inspiring to them.”

One of Pauca’s former students has gone on to specialise in human-computer interaction for disabilities at the University of Toronto, where he is now working on his doctorate.

Meanwhile, Verbal Victor has been downloaded more than 3,500 times since its launch at the end of 2010. And Pauca’s colleagues at Wake Forest have established an interdisciplinary team in health and exercise science, computer science, nanotechnology and business to focus on disability research and technology. Pauca demonstrates a still-under-development iPad app that can interpret head gestures to communicate, for instance.

He still takes his students to visit his son’s school, and they’re now working with a 10-year-old girl with cerebral palsy - an experience that gives them a personal interaction with a disabled person that can be far more inspiring than an abstract lecture.

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